Independent and Community Living - the views of people with disabilities families and frontline staff: Focus Group Consultation Report

John A. Weafer - Weafer Research Associates
July 2010

 

Acknowledgements

I would like to acknowledge and thank a number of people that made this project possible. First I would like to thank the participants in each of the focus groups for their time, views and frank opinions. Second I would like to acknowledge the assistance of different agencies and service providers in the recruitment process and, on occasion, organising transport for the participants. Third, I would like to thank the staff of the National Disability Authority for their assistance and expertise throughout the project.
John Weafer

 

Disclaimer

While the National Disability Authority (NDA) has commissioned and funded the Report on Independent and Community Living - the views of people with disabilities families and frontline staff, responsibility for the report (including any errors or omissions) remains with Weafer Associates, 54 River Forest View, Leixlip, County Kildare. The views and opinions contained in this report are those of the author and do not necessarily reflect the views or opinions of the NDA."

 

Executive Summary

1. Background

The main aim of the study, which was commissioned by the National Disability Authority (NDA), was to elicit the views of various stakeholders on independent living, community participation, and quality of life options for people with disabilities in the Republic of Ireland. Independent living and community participation are broad concepts and for the purpose of this project, the NDA defined these concepts as:

  • People with disabilities having choice and control of the support and the equipment they need
  • People with disabilities being treated as an equal for housing, education, jobs and transport
  • People with disabilities having choice about participation in the life of the community
  • People with disabilities being integrated in the life of the community


The purpose of the Stakeholder Engagement was to hear and have documented the views of people who may not usually have their views and opinions represented in relation to issues concerning independent living and participation in the economic, social and cultural life of the community. It is envisaged that the qualitative data gathered through this process will help inform NDA policy advice regarding the independent living, community participation and the quality of life for people with disabilities. Within the parameters set by the key concepts of independent living and community participation, the participants were given scope to interpret and comment on areas they believed to be important to them. Accordingly, the themes that emerged during the analysis developed from the initial questions set by the NDA and the participants' response to these questions.

The research was conducted by means of 15 focus groups, which were held during March 2010. Appropriate steps were put in place during the design phase of the study to ensure it was conducted in a professional and ethical manner. Further details of the background and methodology may be found in the body of the report and the accompanying appendix.

In this Executive Summary, some of the main views and experiences of the following groups that participated in the study will be summarised:

  • People with Intellectual Disabilities
  • People with Physical and Sensory Disabilities
  • Self-advocates
  • Parents of children and young adults with a disability
  • Frontline staff
  • Advocates


2. People with Intellectual Disabilities

This group comprised a relatively broad spectrum of people with intellectual disabilities, all of whom were over 18 years of age. While some people lived with their parents and others lived in independent accommodation., the consultation found that everyone needed some form of support to live as they would wish. The consultation also found that people with an intellectual disability liked to do many of the same things as their peers throughout Ireland. They liked to socialise with friends, go to work, cook and look after their homes, watch TV, and generally relax around the house at weekends. However, their lives are different and typically more difficult than their non-disabled peers because of their disability and their individual circumstances.

Many participants stated that they found routine tasks difficult and that they needed support with a wide range of tasks including cooking, shopping for groceries and clothes, using transport and getting around town, going on holidays, using local facilities, reading and writing, going to the cinema or pub, using technology, managing money, keeping safe and healthy, finding suitable employment, going to the doctor, crossing the road, driving a car, and homework. Transport emerged as critical for most people, with many participants stating that they had experienced difficulties in accessing and using transport. Some people said they use a taxi or employ a Personal Assistant to bring them places they would like to go rather than waiting for a special bus or using public transport, which some of them found to be infrequent or not going in a direction they needed to go.

Dealing with money was identified as another problem area for many participants, particularly when buying more than one item in a shop. A number of participants also said they disliked going out in public due to their perception of public attitudes, where they believe people 'look at them funny' and 'talk down to them'. Some don't go to pubs or shopping centres because of this perception. However, in spite of their difficulties, most participants have learnt to cope with many of these tasks through instruction provided at home or in their services. The provision of bus passes was also perceived to be very helpful by many participants.

These participants live in a variety of homes and circumstances, with most living at home and others living either in sheltered group homes or in some form of independent living. Those who currently live at home with their families were divided in their opinions of independent living. While some were quite happy to continue that arrangement for the foreseeable future, others would like to live more independent lives away from their families and staff. In all cases, participants who currently live in independent accommodation were happy with their lives and would not like to change.

Some people feared the anticipated upheaval to their lives they envisaged would follow a move to independent housing and they could see no reason why they should move and leave the support and camaraderie of group housing behind. Conversely, a number of group home residents stated that there were too many policies and regulations in place, which restrict their freedom. While they acknowledged that staff are probably concerned with their safety, they felt that they are adults and should be treated accordingly.

Everyone would like to have more friends and to socialise with them more often than at present. However, their experiences to date would suggest that there are limited opportunities outside of services for people to meet their current friends or to meet new friends. Some participants also felt unsafe when they go out at night and, as a result, while some would like to go dancing or clubbing, they rarely do. Thus, for many people, their limited social life is restricted to places and people where they feel safe; with the result that quite a number of people limit their friendships to people they meet in the services and their families at home. One group associated independent living with being able to meet their friends and family more often. Some said they would like to have a boyfriend or girlfriend but personal relationships are rare. In addition to personal safety issues, socialising is restricted by a number of factors including concerns by staff and family members for the person's safety, transport problems, distance to friends' homes and suitable venues, the cost of employing a Personal Assistant, shyness and a lack of confidence on the part of many people with intellectual disabilities.

Approximately half of the participants said they would like to live in independent accommodation as they believe it would allow them greater freedom to do what they want, to go where they wanted (provided it was safe), and give them their own space. In order to live independently most participants would require assistance with many of the tasks identified earlier as causing them difficulties, such as shopping, cooking, cleaning, transport and budgeting. Some also mentioned the importance of having a job where they could earn money and feel independent. Some obstacles to people living independently included a lack of support from their families and staff, resources (e.g., Personal Assistant), a lack of confidence in their abilities (e.g., budgeting), and a deficit of practical skills (e.g., cooking).

Those living independently in accommodation outside their service and families said they did not experience any problems paying their utility bills through the local Post Office. They believe that their lifestyle enables them to have a space of their own, where others have to knock to gain entry and where their belongings are safe and private. This had not been their experience in previous accommodation.


3. People with Physical and Sensory Disabilities

3.1 Difficulties experienced by people with a physical or sensory disability

The participants in these groups identified a number of areas that they found difficult in their lives as a result of their disabilities, including a perceived lack of understanding and thoughtlessness shown by members of the public, access and design issues, service intransigence, transport problems, unequal access to information on services and entitlements, gaps in services, social isolation, and a variety of personal difficulties, such as cooking and driving. These are not new difficulties and many participants felt that the situation had improved over the years. However, they also felt that much more needs to be done by the state and the public if the problems listed above are to be overcome.

Examples of public thoughtlessness mentioned by participants included 'nasty comments' made by school children when they mistook a person's lack of balance due to Acquired Brain Injury (ABI) with his being drunk; people who park in disabled parking spots; and drivers who park on public footpaths. Some participants resented the patronising attitude of some members of the public "who appear to assume that if you are in a wheelchair, you are also 'stupid'.

A number of participants mentioned instances where they were unable to access a building, use facilities, or manoeuvre though town streets due to poor design of buildings or a lack of maintenance of footpaths. Others spoke of inadequate access to information, education and transport as being critical to the lives of everyone, including people with disabilities. Some venues, such as the O2 and Croke Park, were singled out as the type of venue that should exist all over the country. While a major part of the problem in the use of buildings and facilities generally can be attributed to poor design, they felt it was also a question of lack of implementation of existing laws.

One example of service intransigence mentioned by participants included the requirement by one person to use a day centre, which was less convenient for him and further away from his house because he was located in a different region. Another highlighted the large amount of paperwork required when looking for specific entitlements. While some participants were dissatisfied with the level of services, others had experienced difficulties by not knowing how to access services they needed.

People living in rural areas were particularly impacted by transport problems, including infrequent services and difficulties getting on and off public transport. Transport was also be a problem in urban areas, with steep ramps to negotiate on some buses, lifts that don't work at rail and Luas stations, buses that are not accessible, and large gaps between trains and platforms.

While some participants lived with their families, most participants felt that isolation is a major problem for people with disabilities, especially if they live in remote areas and depend on public transport or their Personal Assistants s to bring them places. Some participants said this can be a difficulty as their Personal Assistant can't bring them in their cars due to insurance issues. Others noted that insurance is used by some Personal Assistants as an excuse, while others felt that some nightclubs used insurance as an excuse to restrict entry to young people with disabilities.

Most of the participants would like a relationship with someone of the opposite sex. However, this was perceived to be difficult due to their disability and the unreasonable boundaries that are placed on relationships in their service and by their parents. A personal lack of confidence and a tendency for some people with disabilities to place too much emphasis on their disability are also factors which inhibit the development of adult relationships. Few participants used social networking sites, partly out of fear and a lack of computer literacy.

Independent living was perceived by this group to be primarily about choice and control. They said that it is about knowing what you want and having sufficient support and resources to ensure it happens. It is not always about doing things for yourself and it often entails considerable hassle but it is perceived to be a more normal life.

Some obstacles to independent living identified by this group included an unwillingness on their part to move outside comfort zones, their desire for privacy, a lack of personal confidence, a lack of parental encouragement or support and practical difficulties, such as looking for an apartment and completing forms. A number of participants in one group lived at home with their parents and were quite happy doing so even though they were anxious about the future when their parents would no longer be able to care for them. These individuals in their 30s lacked confidence in their abilities and preferred to depend on the support of their parents.

The consultation indicated that independent living can mean different things for people at different stages of their lives. Thus, while a person with a disability may not need assistance or choose not to use services when they are younger, their needs and circumstances may change when they get older. However, they felt that the system that exists in Ireland makes it difficult for people to 'join' the system later in life.

When asked what would help them live more independent and better lives, participants mentioned a number of things including training in how to do things for themselves, such as cooking; opportunities for them to have more input into their lives; more Personal Assistant hours and a more flexible PA service; equipment, such as hoists and wheelchairs; grants to adapt their apartments; accessible places and transport; to be treated as normal people; and more control over their funds including disability payments.

4. Self-advocates

This group of self-advocates liked participating in the various activities organised by their service and also doing other 'normal' activities, such as watching TV, surfing the web, going out for coffee, shopping, listening to music and watching sport.

Each of the participants had experienced difficulties that were directly related to his/her disabilities. Two people have mobility problems and consequently experience difficulties walking on footpaths that are poorly maintained and taking buses. Those in wheelchairs also experience mobility problems including using footpaths and the use of public transport.

Each of the participants would like to socialise with people his/her own age and to do things that 'normal people do' and without people 'looking at you'. However, the reality is that they believe that they have few opportunities to socialise because of their need to have someone with them at all times and their problems with mobility and in accessing some buildings. The young women expressed a strong interest in meeting other young women to 'go shopping, go to cinema, go out to lunch, meet up at night time if that is possible, hang out and have fun, chat, and do make-up'. However, they generally don't meet anyone their own age outside the day centre. When asked what is preventing them meeting more people now, one participant said she was not allowed out on her own in case anything happened to her. While each of the participants would like to have a boyfriend or girlfriend, the two girls were of the opinion that this would never happen for them because of their disability. When asked what, if anything, would help them to meet more people their own age, they said that more Personal Assistant hours would help, employment in a 'normal' job, and families and staff that were less protective.

They would all like to live in independent accommodation, either on their own or with another person, and this housemate need not have a disability. If given a choice as to the type of accommodation they would prefer, the participants were open to living in an apartment or a house. They all agreed that they would need support if they lived independently, partly to help them with physical tasks and partly for companionship. They felt that part of living independently is making mistakes and they said that they would like to be trusted enough to make mistakes.

5. Parents of Children and Young Adults with a disability

The parents that took part in the discussions represented children with a wide range of disabilities, ages and circumstances. One group was comprised of parents with young children, while the other group of parents had adult children. While some 'children' had a specific disability, such as Cerebral Palsy or Down Syndrome, others had more complex needs with a variety of disabilities; some needed a wheelchair while others were 'physically fine' but had very limited speech or hearing; while one person ran his own business, with the assistance of his mother, others were more or less totally dependent on their parents and other carers. What unites them, according to one parent, is that 'none of our children could live without care' and the belief that 'nobody could do what we do'.

When asked what it is like to be the parent of a child or young adult with a disability, these parents described a life of hard work, exhaustion, fear, hope, despair, anger, isolation, intimidation, commitment, acceptance and love. Some parents felt abandoned and isolated, while acknowledging the support provided by services and especially their wider families. They were tired of having to 'push' for everything their child needed and, in their opinion, were entitled to. Most parents are sceptical of government initiatives and proposals for change because of the shortage of resources generally and staff levels in particular.

Some parents were hopeful that their children might be supported to live independent lives, while others were doubtful if this could ever happen. For the most part, these parents believe that they will be 'in' their children's lives until they die. Thus, while all parents want their children to live 'normal' lives, where their children could be relatively self-sufficient, capable of earning a living, and living alone or with friends, some parents realised that the profound nature of their children's disability meant that constant care would be required. Independence means different things for each parent, depending on the level of their child's disability. Parents of children with more profound and complex needs highlighted the need for more structured care, such as the care provided by group homes, while parents of children with less profound needs spoke of the possibility of their children living independently with the minimum of support.

They also admit to being possibly too protective of their children but justified this on the basis that a parent knows what his/her child requires. Finance was also a significant problem for some parents, particularly where they depended on the disability allowance for the care of their child. Their concerns ranged from the considerable costs associated with the care of their children to smaller but nonetheless tangible costs of paying a babysitter.

A number of parents linked the reality of independent living with a time when they would no longer be able to look after their children. One of the main fears most parents have with regard to the care of their children is what will happen to their children when they are too old or when they die and are no longer able to care for their children. Although many parents are still relatively young people, the fear of what would happen to their children when they died seemed to pervade their lives. They believe that independence should mean more than simply catering for a person's basic needs, such as accommodation, personal hygiene, and safety. These parents felt it should also be concerned with the quality of a person's life, such as being able to meet friends and peers, and to pursue activities they wish. However, their perception was that without parental support, this may not be possible.

When asked what would help their children live more independent lives, the parents suggested the following: transport, a Personal Assistant, accommodation in a community of mixed houses with young and elderly residents, opportunities for their children to meet more of their contemporaries, both inside and outside services/day centres, services that are more fully integrated and which take account of multiple disabilities, to be treated as an individual, and equal access to services throughout the country. Many parents expressed concern about the quality of lives that may be possible for their children unless services are enhanced significantly.

The experience of some parents was that people with disabilities can become isolated from their communities and peer groups if they are treated as 'special' and placed into services that are geographically and socially separate. They felt that this can have long-term detrimental effects on a person's life. One response, which some parents favour, would be to mainstream more services and to make certain there are sufficient resources and adequate infrastructure to ensure the programme is suited to the needs of everyone. However, other parents felt that individualised supports and mainstreaming would never work for their children due to the profound nature of their disabilities. This latter group felt that there is a danger that parents would be left to fill in the gaps left by mainstreaming. This is what is perceived to have happened with the psychiatric services when a community-based service was promised but never materialised. Some parents also mentioned the adverse implications of not supporting mainstreaming education properly.

Some parents felt that their children were not being adequately integrated into the community when they were brought out as part of large groups for people to stare at them. Furthermore, some said that integration and active participation in the community is made difficult by the fact that many members of the public don't know how to respond to people with disabilities and by a fear of litigation if things go wrong. In some cases, parents felt their children were being labelled by health professionals and members of the public and while it is understandable that members of the public don't know how to respond to people with disabilities, it is much less so when it involves health professionals.

Physical access is also a problem for some parents, especially when their child uses a wheelchair. A number of parents criticised the quality of facilities, especially lifts in shopping centres and toilets in public buildings, as being inadequate. The lack of transition planning between children and adult services was highlighted by a number of parents as a big problem in enabling people with disabilities adjust to new circumstances.


While most parents acknowledged the important contribution of services to the quality of life led by their children, they also criticised service provision for the following deficiencies: poor value for money and a lack of transparency, the persistence of the institutional mindset and practices, gaps in adult services, raised expectations, unequal access to services in different parts of the country, a lack of information on entitlements, inadequate planning and coordination of services, insufficient number of staff, a lack of flexibility in mainstream medical services, poor levels of independent advocacy, the piecemeal nature of the service, a lack of recognition for some disabilities, few opportunities for respite care, and the break in service during summer breaks.

6. Frontline staff

The staff that participated in the focus groups comprised a range of professionals including, speech and language therapists, social workers, community coordinators, administration, occupational therapists, transport, public health nurses, personal assistants, and intellectual disability services.

These participants placed considerable emphasis on the rights of individuals with disabilities. The general view expressed in the groups was that while many services had gone someway towards integrating people into the community, the persistence of historical practices, such as always having fish on Friday, suggest they have still someway to go before service users are treated fully as individuals with rights and choices. They felt that there were 'ingrained ways of doing things' in many organisations and that individual staff are naturally reluctant to take risks without the support of families or a higher authority that would indemnify them for pushing out the boundaries on behalf of the person with a disability.

A number of staff praised the role of independent advocates in helping service users access their rights and challenge the traditional practices of services. Conversely, staff also felt that parental consent can sometimes restrict the rights of an individual. Some surmised that parents are afraid of their child becoming too independent because this increases the likelihood of their child moving out of the service to live in the community where parents believe there are less services. The staff believe that some parents fear that their children will end up coming home to be minded by them when they will be too old to be carers.

Overall, staff believe that services have improved significantly. However, there are still many problems with some aspects of the care system, such as difficulties with transition periods, the unequal distribution of services around the country, the difficulty of accessing services as an adult, and transport problems.

Most of the participants identified at least one challenge or frustration they faced in working with people with disabilities, including: cuts in funding, inequalities in the provision of services between different parts of the country, changing traditional mindsets and behaviour, the impact of accountability on care and creativity, the perception that some management are out of touch with the ordinary worker, the way paediatricians tell parents their child has an intellectual disability, and the challenge for staff to change their attitudes and practices. A major dilemma for some staff in intellectual disability services is whether they should allow relationships between service users to develop naturally or not.

A number of staff felt that independent living is not a static phenomenon and that it changes according to a person's life-cycle stage, disability and other circumstances. Accordingly, they felt that the best type of housing for a person with a disability depends on 'what is happening in their lives at any one moment in time'. For some people, it could be a two-storey building, for someone else it is an apartment, and another it is a wheelchair accessible building. In your 20s, it can mean sharing with friends, while for someone in their 30s, it may entail living with a partner.

When asked what factors would promote greater independence for people with disabilities, participants made the following suggestions: greater choice; transport that is accessible, inexpensive and which goes places people want to go; a home where residents have a real choice of who comes in or out; opportunities for people to be with their friends; employment opportunities, which would enable a person make money and feel respected; opportunities for people with disabilities to integrate with others who do not have a disability; a Personal Assistant that is focused on the needs of the person rather than bureaucratic rules; control over funding that would give them autonomy on how money was spent and how resources are used for their benefit: more planning for long-term needs; early intervention services; transition services; information related to their disabilities; access to buildings and entertainment venues; acknowledgement that people with disabilities can contribute to society and that society will see this and acknowledge their role in society; achieving a balance between duty of care and allowing people to make mistakes and have negative experiences. a change in public attitudes to people with disabilities; easy access to equipment, such as wheelchairs, that are necessary for mobility and getting people out of their homes; and less holes in footpaths.

7. Advocates from the Community and Voluntary Sector

The advocates that participated in the discussion were employed in the community and voluntary sector for people with disabilities. Unsurprisingly, perhaps, the advocates stressed the importance of people with disabilities having basic rights and choices. Unfortunately, they believe that this is not always the case due to parental involvement, support organisations that are concerned with indemnification against claims, staff who put the needs of the service ahead of the service user, inadequate resources within a service, an organisational culture where the focus is on the service provider and where no one questions established practices, and the pressure on staff of 'duty of care' considerations.

The advocates believed that everyone can live independently if the 'right supports' are in place and that everyone with a disability has a right to live independently. They said that independence will mean different things for different people, depending on their abilities, needs and circumstances. For some people, this will mean 24-hour care, while for others, fewer supports will be required.

The advocates identified a number of obstacles to independent living, including the reluctance of staff to allow service users to make their own decisions even if it entails making mistakes; inadequate Personal Assistant hours which are decided by resources rather than the needs of a person; the dampening of hope that results from continuous training without much, if any, hope of employment; the lack of coordination of services for people with disabilities; access to transport; the disempowering culture and practices of the HSE at local level; the absence of adequate transition between residential care and independent living; and the unequal geographical distribution of services.

Independent advocacy is regarded as hugely important for people with disabilities, particularly those in long-term residential care. The participants stated that advocacy makes a difference by helping people make relatively small but nonetheless important changes, and thereby encouraging others to do something similar. However, they also acknowledged that they are making a difference 'on an individual basis' rather than at a cultural or systemic basis, which is where many of the problems originate.

It is also the case that advocates are not always readily accepted by service providers, with some service providers 'using them' to bring about change with difficult clients. They also noted difficulties that can arise between their role as advocates and the interests of service providers and that they are 'constantly reminding the service' that both they and the service provider are acting in the best interests of the persons and that they 'are not fighting each other'.

8. Recommendations

These difficulties and issues suggest a number of recommendations, which are

  1. Practical ways of promoting greater co-ordination of services for people with disabilities should be explored, so that all services relevant to the needs of an individual will be fully aware and involved.
  2. Early and regular assessments should be carried out on people with disabilities to monitor and respond to changes in their circumstances.
  3. People who need to access services for the first time as adults should be facilitated.
  4. Additional resources should be considered for adult services.
  5. Individuals who wish to have greater control over their lives should have the option of direct access to funding.
  6. Current transport options should be evaluated to maximise their efficiency and value for money.
  7. Institutional mindsets in services should be challenged and opportunities for enhanced creativity explored by investigating best practice in Ireland and internationally.
  8. Individuals with disabilities should be supported to consider independent living if they so wish and appropriate supports put in place and sustained.
  9. Disability awareness programmes should be considered for schools and the general public which would challenge public thoughtlessness in relation to disability.

 

Chapter One - Introduction and Background

1.1 Introduction

This report presents the findings from consultation conducted on behalf of the National Disability Authority (NDA) during March 2010. The NDA is the national independent statutory body established to advise the Minister for Justice, Equality and Law Reform on policy and practice relating to people with disabilities. NDA's statutory mandate on policy advice, research, standards and universal design addresses the inclusion of people with disabilities in the economic, social and cultural life of the community.

The main aim of the study was to elicit the views of various stakeholders on independent living, community participation, and quality of life options for people with disabilities in the Republic of Ireland. The NDA has identified independent living and participating in the life of the community as a key priority area over 2010-2012. More specifically, Strategic Priority 2 in the NDA's Strategic Plan 2010-2012 aims to provide evidence-based policy advice to promote independence and quality of life for people with disabilities across the lifecycle. Among the evidence the NDA wishes to gather to inform this work is information from the lived experience of people with disabilities on what would promote or restrict their independence and full participation in the life of the community.

Independent living and community participation are broad concepts and for the purpose of this project, the NDA defined these concepts as:

  • People with disabilities having choice and control of the support and the equipment they need
  • People with disabilities being treated as an equal for housing, education, jobs and transport
  • People with disabilities having choice about participation in the life of the community
  • People with disabilities being integrated in the life of the community


1.2 Methodology

Focus Groups

The consultation was conducted by means of focus groups, which may be described as 'a loosely constructed discussion with a group of people brought together for the purpose of the study, guided by the facilitator and addressed as a group' (Sarantakos, 2005, p. 194). A focus group is a particular form of qualitative consultation, which is quite different to an in-depth interview or a series of individual interviews, insofar as focus groups use the group dynamic to generate data and insights. A typical focus group comprises eight participants from 'reasonably homogenous backgrounds' who come together in a centralised location (Domegan and Fleming, 2003, p. 146). Finch and Lewis (2003) summarise the key characteristics of a focus group as follows:

Data are generated by interaction between group participants. Participants present their own views and experience, but they also hear from other people. They listen, reflect on what is said, and in the light of this consider their own viewpoint further. Additional material is thus triggered in response to what they hear. Participants ask questions of each other, seek clarification, comment on what they have heard and prompt others to reveal more.(Finch and Lewis, 2003, p. 171).


Unlike its quantitative counterpart, which typically seeks to measure and predict human behaviour using numerical data, qualitative consultation is more interested in understanding and authentic interpretations of specific social situations (Neuman, 2003). Qualitative consultation can fill gaps in knowledge that are not amenable to quantitative enquiry and, more importantly in the present context, qualitative methods give participants a 'voice' (Mayock, 2009). Thus, while the present study is based on the views and experiences of a relatively large number of participants, it is the depth and quality of the information that is of most value to the study.

The policy documents of the NDA also endorse the use of focus group discussions facilitated by an independent facilitator for consultation with marginalised groups that have 'little experience of involvement in consultation processes' (National Disability Authority, 2004, p.17).

An important feature of the present set of focus groups was the underlying inductive strategy that was designed to hear and have documented the views of people who may not usually have their views and opinions represented in relation to issues concerning independent living and participation in the economic, social and cultural life of the community. Within the parameters set by the key concepts of independent living and community participation, the participants were given scope to interpret and comment on areas they believed to be important to them. Accordingly, the themes that emerged during the analysis developed from the initial questions set by the NDA and the participants' response to these questions. Thus, further to grounded theory the consultation adopted an inductive strategy, albeit supplemented by deductive tactics (Wengraf, 2001) During the analysis stage, themes were initially identified by the lead researcher and validated with the assistance of a colleague.

The groups were moderated by an experienced facilitator using a topic guide that was agreed in advance with the National Disability Authority. Quality of life is a 'multidimensional construct' and this was taken into account when designing the topic guide (Felce, 1997). The topics were initially divided into two broad categories, independence and social and community participation. More specifically, the consultation entailed participants giving their views on the following areas of their lives.

  • What would help people to live the life they want to live and what would hold them back from achieving this?
  • Where would they like to live in five year's time, what would help them achieve this, and what would hold them back?
  • Who would they choose to live with if they had a choice?
  • What would help them or hinder them from being more independent in their everyday life, their daily activities and in choosing how to spend their day and where to go?
  • What would help them or hinder them spending more of their time with people they like?
  • What would help them or hinder them doing activities that people their own age or stage of life do?
  • What would help or hinder them use facilities and amenities in their neighbourhood or downtown that they would like to use?


Each of the groups were recorded and transcribed by the author. This methodological process facilitated analysis and the liberal use of verbatim comments from participants throughout the text, which ensured that the 'voice' of the participants was given primacy over any interpretation by the facilitator or the reader. However, it is also acknowledged that 'a transcription is always partial because it is an inadequate record of non-verbal aspects of the interaction' (Mason, 2002, p. 77). This is particularly important to keep in mind in the present study due to the considerable range in the capacities of participants to express themselves verbally. While some participants were very articulate, others were capable of very limited verbal communication. In the latter case, the author took notes to ensure the views of non-verbal participants were given due attention in the text of the report.

The Consultation Process

A comprehensive consultation process was put in place following consultation with the NDA in order to ensure that the consultation was conducted efficiently and in accordance with best practice guidelines endorsed by the NDA (National Disability Authority, 2004). An overview of the group characteristics is presented in Table 1.

Table 1 Structure of Focus Groups
 

Group

Age Range

Disability

Location

Date

No. of Partic-ipants

1

Intellectual

18-30 years

Moderate learning and intellectual

Dublin

3rd March

4

2

Intellectual

31-45 years

Moderate learning and intellectual

Cork

1st March

6

3

Intellectual

45-65 years

Moderate learning and intellectual

Galway

4th March

9

4

Intellectual

25-40 years

Day service users

Navan

2nd March

5

5

Physical/ Sensory

31-45 years

Day service users

Dublin

10th March

5

6

Physical/ Sensory

45-65 years

Day service users

Tullamore

18th March

7

7

Family

Parents of children 0-18 years

Mix

Dublin

15th March

3

8

Family

Parents of adults 18+ years

Severe intellectual disability

Sligo

5th March

8

9

Self- advocates

25-40 years

Mix

Cork

8th March

4

10

Advocates

Mix

n/a

Sligo

5th March

9

11

Frontline service staff

Mix

Day services

Galway

4th March

9

12

Frontline service staff

Mix

Community services

Tullamore

18th March

7

13

Intellectual

18-30 years

Moderate learning and intellectual

Dublin

10th March

4

14

Intellectual

31-45 years

Moderate learning, autism intellectual

Cork

8th March

6

15

Intellectual

45-65 years

Moderate learning, and intellectual

Galway

11th March

9

 

Total

    

95


A primary focus of the consultation process was that it would be undertaken in a professional and ethical manner, which would respect the participants and provide appropriate supports. A summary of the main elements of the consultation is outlined in Table 2 (overleaf).

Table 2 Key Elements in Consultation Process

Stage

Description

1. Targeting

The NDA stipulated that the focus groups should include people with intellectual disability, physical and sensory disabilities, family members, advocates, and frontline service providers.

2. Information

Information packs, consent forms, and letters for participants and service providers were designed by the NDA. These documents contained practical information on the consultation process. Two versions of the documentation were designed in accordance with NDA best practice and the advice of an external ethical advisor. The first 'plain English' version was geared for people with average intellectual abilities, while the second version was designed for people with intellectual disabilities. Copies of both versions are appended to this report.

3. Recruitment

Various service providers and agencies were contacted by the NDA to request their assistance in the recruitment of participants. Information was provided to these organisations in written format and followed up with a telephone call from the NDA.

4. Access

Practical arrangements were put in place to host the focus groups in the various locations around the country. All venues were checked for access and location.

5. Duration

The focus groups were held in the selected venues, with each group not exceeding one and half hours, or one hour in the case of the groups with intellectual disability.

6. Consent

Participants were informed on a number of occasions that they were free to participate or not. A consent form, which participants were asked to read and sign was given to each participant in advance of the consultation process.

7. Support

Each participant was allowed to bring a support person to the group if they so wished. The service providers and other organisations also provided contact details for support persons, with appropriate expertise and experience. The participant could contact these persons if the discussion or the consultation process upset him/her. In addition to the facilitator, a second support person was present during the groups in case participants became upset and needed to leave the group.

8. Recording

The groups were recorded with the permission of the participants.

9. Report

A detailed report was compiled and presented to the NDA


1.3. Format of the Report

Following this introductory chapter, the findings of the consultation process for each of the four target groups will be presented in six separate chapters - people with intellectual disability, people with physical and sensory disability, self-advocates, parents of children with disability, frontline staff, and advocates. This is followed in chapter eight with concluding comments and some recommendations. An executive summary and an appendix containing the material used in the consultation process are also included.

 

Chapter Two - The views and experiences of people with intellectual disabilities

2.1 Introduction

The information presented in this chapter is based on the views expressed by participants in four focus groups held in Dublin, Cork, Navan and Galway, respectively. All of the participants had an intellectual disability and some had verbal communication issues. However, for the most part, they were able to communicate effectively and to give their views on issues affecting their lives. The participants also varied by age, background, level of disability, and living arrangements. Thus, while some participants lived at home with their families or in independent accommodation with appropriate supports, others lived more restricted and regulated lives with staff support. Everyone was over 18 years of age, and as indicated in Table 1 above, the three groups of people with intellectual disabilities were recruited to reflect three different age groups: 18-30 years, 31-45 years, and 45-65 years. Each participant was allowed to bring their Personal Assistant or someone they trusted into the group if they felt they needed support and some did avail of this opportunity[1].

Further to the questions listed in the topic guide, the discussion focused on the life they would ideally like to live and what choices they would make regarding their accommodation and social lives if they had sufficient supports and resources. However, since some participants had difficulties visualising an alternative lifestyle, the groups began with a discussion of things they like doing and activities they find difficult to do.

2.2 Activities people with intellectual disabilities like to do

The three areas participants liked doing fell into one of three broad areas, socialising with friends, work, and home. While some people were able to carry out these activities more or less by themselves, others required support from staff in their service, a family member or another support worker. Everyone said they liked socialising or 'hanging out' with friends, although it would appear that the reality for many people is that they did not have friends outside their service and that few of them met with their friends at weekends or during holidays. The younger participants' interests were similar to those of their peers - listening to music, going to concerts, texting their friends, and watching TV and DVDs. The younger participants also used computers more than their older counterparts and many were involved in some form of active sport. The younger participants use emails to contact each other but, unlike their age-related peers who do not have disabilities, no one is a member of a social network. Older participants preferred to watch TV (typically soaps for women and sports or documentaries for men), listen to music, read books, write poetry, or simply stay at home. While some people of all ages went to pubs with friends or family members, some found the experience very enjoyable, while others found it somewhat distressing. The older women enjoyed cooking and looking after their homes.

Most of the younger participants said they would like to work in a job where they could earn money and wear nice clothes. However, at present most don't work outside their service due to their personal circumstances and difficulties in finding suitable employment. If this were to change they would need help in securing the job in the first instance and in travelling to and from the job. Most of the jobs mentioned by participants as suitable for them were quite basic, such as working in a crèche, restaurant or music shop. However, some participants have phobias, such as the fear of getting dirty, which would make employment difficult to them. A number of the older participants who currently have jobs said they enjoy the experience and the sense of independence it brings. Some people who used to work in regular employment no longer do so because of the recession or changes in their personal circumstances. A few individuals spoke of their desire to start their own business, although none of them were too optimistic that it would ever happen due to their disabilities and a lack of encouragement from their families.

Everyone would like to have more friends and to socialise with them more often than at present. However, there would appear to be limited opportunities outside of the services for people to meet their friends or to meet new friends. Some said they would like to have a boyfriend or girlfriend but personal relationships are rare. Some participants also feel unsafe when they go out at night and, as a result, while some would like to go dancing or clubbing, they rarely do. Thus, for many people, their social life is restricted to people and places where they feel safe, with the result that quite a number of people limit their friendships to people they meet in the services and their families at home. One group associated independent living with being able to meet their friends and family more often. In spite of the perceived importance of socialising for these participants, socialising is restricted by a number of factors including concerns by staff and family members for the person's safety, transport problems, distance, the cost of employing a Personal Assistant, a natural shyness and a lack of confidence on the part of many people with intellectual disabilities.

Some initial verbatim comments relating to these three areas are outlined below.

Socialising with friends

I like going out with my friends. Going out for lunch or dinner, or to the O2 or town, something like that.... I meet my friends in the service.... I like going out with friends and family to cinema or something.... On Monday we do friendship and I like being with Seamus.
I like to do basketball. I have a coach and we practice for the match. I don't do sports but I do swimming for the Special Olympics.
We go to the pub on Saturday nights... I am not allowed out after 10pm. It gets dark early. There could be someone watching you or following you. I go to the pub with my support worker on Friday and I buy her a cup of tea. I like bingo. Sometimes we go dancing, on special occasions at Christmas.... I go to an Irish session in one of the pubs on Thursday and I have a lot of friends there. I also go to the cinema a lot.
It is hard for me to go to the cinema. The film is over at 5.30pm but the Nifty comes for me at 5pm. I don't go to the pictures because it is hard to get home.
Sometimes I buy a ticket for the pictures and then food. I had a problem about it. Some people told me to stop drinking and I just wanted to watch the film and I didn't know what time the film was finished at. I don't go to cinema now. I go to shops.
When they use the 24-hour clock it is hard to understand - 18.15 is kind of hard to understand on the posters.
I used to find it hard to know how much money it cost for the ticket and the food. Finding it hard to actually add it up.
Staff go where I go to help me. I go to the pub in my wheelchair. I pay the PA (Personal Assistant)to go with me. I can come home when I want if I am with my PA.
You have to be home early because the staff have to go home. They finish at a certain time.
Sometimes my girlfriend plan for the future. It is like you are getting married.....I used to have two girlfriends but I don't have one now.
I would like to live with my boyfriend of 11 years. I would do everything for him - cleaning and cooking. He has his own house and I have my own house and we see each other during the week.
I have three friends.... I have mammy and daddy.
I have a lot of friends but I don't see them too often.
I go to the cinema and meals with my friends.
I have friends to talk to.
I would like to go out more but there are cutbacks going out at the weekends.
I would like to go clubbing more and meet up with more friends.
I have a bus pass and can go anywhere with staff.... I went to the museum on the bus.
I have friends in the workshop and the house. I meet up with special friends. It is nice to have friends. They help you if you are upset about anything.
Some people I don't want to mix with because some days I am tired from working and I wouldn't be in the form for talking, so I just sit and watch TV. I do be tired from work sometime.
I would like to meet more friends.
I have a special friend I can trust and tell things to. I have other friends too.


Work

I would love to get a job and I don't have a girlfriend yet. I will get one when I get older though I don't know how to get one. I like to work in an office. My uncle works in an office. I have never worked in a job. I would like to work with him in an office. My uncle told me all about it.
I work in the hotel but my hours are cut down. Things are very quiet. I would like to work more hours for the money...I would like to work but my boss won't let me. I used to work polishing furniture but I gave it up - it was boring... I used to work in a pub. My favourite job is in cinemas. I would love to work in a restaurant and serve people food. I would love that...I worked in a shop in Santry with my mam's brother. I love working. I get the bus up and back... You know when you get a job and you have to do important stuff like serving dinner, you might have to carry plates and give them to other people. I would like to work in a restaurant. It could be good.
I have a job. I work in a crèche and I love it. I love kids. You get paid.

I love living on a farm. You can see calves being born and canaries hatching out. My dog had puppies in December. It was really funny to see them playing.
I like to cook bacon and cabbage or chops... I like watching Emmerdale or Coronation Street and different programmes that are on - Fair City. In the morning we have our breakfast and go to the workshop at 9. We come home at 5 and I put on the cooker and put on the dinner... I like working and listening to my CDs and DVDs, listening to the news, and watching the soaps. I live on my own and I like tidying my own house.
I like writing poetry and watching television, especially BBC2.
At weekends, I laze about and listen to my CDs. I go into town first and have a late breakfast. I tidy the house on a Sunday.... I tidy the house and go into town on Saturday... I go to the pub with my support worker... We look at rugby.... I look at Fair City, what we want to do ourselves.


In summary, these participants like to do many of the same things as their peers throughout the country. However, as the following section shows, they encountered more difficulties than others because of their disabilities.

2.3 Difficulties experienced by people with intellectual disabilities

General Difficulties

Many participants said they found routine tasks difficult and that they needed support with a variety of activities such as cooking, shopping for groceries and clothes, using transport and getting around town, going on holidays, using local facilities, reading and writing, going to the cinema or pub, using technology, managing money, keeping safe and healthy, finding suitable employment, going to the doctor, crossing the road, and homework. Some tasks, such as working in outside employment or driving a car were perceived to be impossible by themselves or were deemed to be inappropriate by their families or carers. Conversely, most participants have been taught by their services and families to do many tasks by following a routine that is familiar to them. Some, for example, have learnt how to read bus timetables and to know where to get on and off a bus. However, this can still be a problem if they miss their regular bus.

In general, older participants and those who currently live in independent accommodation tend to experience fewer problems in doing routine tasks than their younger counterparts. They have been taught how to cope with difficulties through formal lessons and life experiences.

Grocery and clothes shopping is one area that presents difficulties for some people, as illustrated by the following verbatim comments.


Grocery Shopping

I go shopping with my mam and if she tells me to go and get milk I go and give it to her. I know where everything is in the shop. Sometimes I go to the shop for a sandwich or a drink. I do shopping with my mam and sometimes on my own.
I go shopping on my own because I know the shop really well. I know where all the stuff is, newspapers and stuff you have to get for lunch. I use a list to help me remember things you might forget.
I sometimes forget things in shops. On Sundays I get a newspaper for my nanny and my mam will write down the name of the paper that I have to get. I know how much it costs and the right change.
Sometimes you have to add up the money and see how much you have if you are paying for your food to see how much money you give them.
I always go to Superquinn. Sometimes I go with my mam. It is very difficult for me and I have to be very careful with the traffic lights. Every time I cross the road, my mam holds my hand because it is very dangerous. I need to look the way mam does and listen for the cars coming. Mam won't cross the road unless the green man is lighting. It is just very hard for me to cross a road.
I go shopping with my support worker and my coordinator and they help me out. I know how much things cost and how much to give in.
Staff write down the shopping list and the staff give in the right money for it. We go with her to help her carry back the shopping to the house, anything we need for the week. Staff help us pick out clothes and we pick what we want.


Shopping for clothes

I go with my mam to Drogheda. Sometimes when I get jeans they are too long and they are too long and difficult to walk. Sometimes I get clothes in Diesel, or Jack and Jones, or somewhere like that. I always go shopping for myself. I never go shopping for my mam's clothes.
I buy my own clothes. My mam comes with me. I like nice clothes.
I pick the clothes but my mam pays. Sometimes we go to town or a shopping centre.
I find it hard to know what colour goes with other colours.
I know my size in clothes and I know how much my clothes are and how much my groceries are.
I know what I want. I don't know what things cost but my carer keeps my money until I need it.
I need someone with me if I was buying trousers. I buy what I want but sometimes they are not the right size. I get people to help me buy clothes....I can handle money ok. Staff are with me when I buy clothes.
I pay for the PA(Personal Assistant) myself and we go into town to buy clothes and we had good time in town watching the rugby.
I would need help buying clothes. My helper usually goes with me or somebody else. I pick them myself and I am wearing clothes I like. You have to get a number to fit them on, go into the dressing room. How much is that now? Oh, that would be too dear or too cheap, or the size might be too big or too small. You don't say anything but just go down and get a different size and bring it in and try it on....I buy my own clothes but my mammy comes with me.... I argue with my mother. She might say it is too bright or too dark..... I sometimes go with someone when I buy clothes if I am not sure of sizes....I go with my sister in law.


Getting Around

Many participants have experienced some difficulty in using public transport, although the majority have learnt how to use buses and trains safely. A number of participants were also worried about their safety when crossing the road. Managing money is not an issue for most people as the bus pass means that most don't have to worry about payment when taking a bus. Two people who live outside the city often find that buses are not frequent enough, resulting in their having to take taxis or look for lifts from family members or friends. Some participants across all age groups fear getting lost, finding places in town, and not recognising the number of a bus. One young woman dislikes taking the special service bus as 'everyone would be staring at you and treat you different'. For this reason, she prefers taking the ordinary bus where 'no one looks at you'. Individuals in the other groups also expressed similar sentiments.

Sometimes I find it hard to cross the road. The cars go too fast and it is very dangerous not to cross at the lights. When I cross the road at traffic lights, sometimes I don't see things good and I can't see which way the cars are coming. If you get hit by a car, you are dead like.
I would like to drive... I wouldn't like to drive. If you drive and drink that would be very bad.
Sometimes I missed the bus when I went to the shops for my mam but not now. I can see the number when the bus comes near. I love to get 33 bus to Swords but no buses sometimes. I go on the Nifty bus but it is awkward.
If you get lost in town you might not know where you are going. Me too. I got lost when I was young.
When I go the cinema or anywhere I go in the car with my mam.... I have never taken a bus by myself and wouldn't like to.... I used to take buses to town in the late 1960s and early 1970s, now I go with staff..... I have no difficulty getting buses.
I walk to work every day and you just get used to it.


Holidays

Most participants had been on holidays with their families or a staff member. However, while some of the younger participants were still going on holiday with their families, most said they would like to go on holiday with someone other than their family. Two young women were critical of the fact that service users have to pay for staff travel. They were also less than pleased with the constant attention from staff during their holidays. Older participants were less bothered about this provided the holiday was what they wanted.

We save money every week in the Post Office for our summer holidays, wherever we want to go. This Sunday I am off to London for 2 nights and I am excited about going on a plane. I was in London before. A few of us are going together. At least I am not going on my own as it is a very big place. I wouldn't know it. We go on holidays in the summer and the staff comes with us. I wouldn't go on my own. There are big towns I wouldn't know, Dublin and places. Galway would be all right I think.
I am going to Bristol in the summer but I won't go without my support worker.
I am going on holidays with my support worker and she lets me do my own things - we go shopping and walking. I save money so that it is there when I need it.
I take the ordinary bus into town. If I am going to buy clothes I have someone with me.... I have difficulties getting around town. I need traffic lights to cross roads and the footpaths are dangerous. I might fall. There is usually someone around when I go to town.

Public Attitudes

A number of participants dislike going out in public due to public attitudes, where they believe people 'look at them funny' and 'talk down to them'. This perception was common to all age groups. As a result, some people don't go to pubs or shopping centres. Some participants experienced difficulties in going to the cinema or the pub at the weekend due to a number of factors including unsuitable bus times, restricted access, knowing the time, managing money, the attitudes and behaviour of other people, and having to be home at a set time for safety reasons and to keep in with staff timetables. Some of the older people have addressed some of these difficulties by employing their own Personal Assistant to accompany them. However, this option was not always available to people without financial means.


Computer Literacy

As previously mentioned, the younger participants were more computer literate than their older counterparts and they used computers routinely for looking at clips on YouTube, watching DVDs, and playing games and music. Most younger people said they send emails to their friends. They were taught to be cautious when they use the Internet, with the result that no one uses social networking sites. Some of the older participants also access the Internet but typically for entertainment sites and finding out information concerning, for example, bands and venues. While all the younger participants and some of the older participants had mobile phones, many of them found it difficult to send and receive text messages, and some disliked leaving voice messages.


Visiting the Doctor

Most participants, especially the younger group, require support from a family member or support worker when they are going to the doctor. Most of the younger participants attend the family doctor as they live at home with their parents. For the most part, it would appear that the doctors explained the procedures in ways they could understand, although some participants don't like when the doctor speaks to their parent and doesn't look at them. In the words of one participant, 'My mam does all the talking. I do some of the talking too'.


Cooking

Most participants need help in cooking hot meals due to dexterity or balance problems and a reluctance on the part of their carers and parents to let them cook meals. The older participants, many of whom were in independent living tended to cook more than their younger counterparts, most of whom lived at home with their parents.


2.4 Accommodation

These participants lived in a variety of accommodation and circumstances, with most living at home and others living either in sheltered group homes or in some form of independent living. Those who currently live at home with their families were divided in their opinions of independent living. While some were quite happy to continue that arrangement for the foreseeable future, most of the younger adults would like to live more independent lives away from their families and staff. In all cases, participants who currently live independently were content with their lives and would not like to change.

However, it is not always easy moving into independent accommodation and one young woman had tried and failed. She would like to live in her own home but was refused social housing because her father was a farmer 'with too many acres'. However, she felt this was unfair to her. Her parents own the farm and not her.

They didn't ask me what I wanted to do. They just said, no way. I wouldn't get social housing because I am living with my parents and I am not squashed into the house. They didn't look into things properly. I would like to live in the country on my own.


A number of participants, both young and old, would not like to live with their friends because of the fighting they anticipated would happen. This latter group could not imagine living apart from their families or group home. Most of their friends live at home also and that is the way they like it. This group appeared to be quite institutionalised and over-protected by their service and families when compared to the majority of participants who were being encouraged to consider some form of independent living.

I live with my mother and my brother and that's where I want to stay.
I wouldn't like to live with friends. Sometimes you might get into a fight and things would be all upset. If there was a bit of trouble in the house, you would have to move out. .... I hate fighting.... I have never lived with a friend.
I am happy now I wouldn't like anything to change. Maybe a little different?
I would be a little bit worried living by myself. Sometimes the 23 bus doesn't go when it should. Sometimes I am lazy. I don't do much cooking. I love to cook but when I see my mam cooking I can see it is difficult.
Sometimes I need someone to help me.
My dad would pay for my new house but not now. I would like to live independently but not yet.


A few individuals would like to live in their own apartment or house located close to where they currently live, with a friend or in a relationship with someone of the opposite sex. The younger participants were most shy when discussing relationships but some were quite adamant that they would like to live with a boyfriend/girlfriend. Some older participants also expressed similar sentiments.

I want to live in an apartment, maybe close to where I live now in Donabate or maybe in Lusk or Balbriggan. I would like to live with my girlfriend.
I would love to live in Swords because I am a member of a gym in Swords and I go there with my mam. I would like to live with one of my friends.
I want to live in Kilbarrack. My gym coach lives there. At the moment, my mom doesn't want me to live on my own, so I will stay with my mom. I don't want to leave my house. I cook as well but the cooker is very difficult to use. I can hoover and things.
I would just like to have a housemate. I have three carers who come in and I do get time on my own but I would like more time on my own without staff coming and going. I feel it is not my house.
At the moment I am with my mom. God forbid if anything happened to her. I wouldn't mind that. I would like to live in Navan with other girls. I am independent now, living with my mother.


Most participants acknowledged that they currently require or would require assistance from someone if they were to live independently, although, for the most part, they would not like staff to live in. They were also very conscious of the cost of purchasing a house.

You might need help doing a few jobs in the house or driving around the streets. I can cook but I would need help. I would probably have enough money.
I can't walk on a road with no footpaths and I cant cross the road with no crossing. I don't do much cooking. My mam does the cooking. I don't.
I would like to live with friends who are in my hostel - we could go to matches, rugby matches, listen to Morning Ireland, go to the cinema, play bingo, listen to 5 seven live in the evening, live with the lads and staff - I love where I am.
It is a good idea to live with someone. I cook dinner myself. I wouldn't need help in the house but I don't do any shopping at all. I would like to have someone living in the house with me, people without disability.
I wouldn't like to live in a house alone or with others.
I am better off where I am now.


A number of the older participants believe there were too many policies and regulations in group homes, which restrict their freedom. Some said they were not allowed to have visitors, to eat food they like, or stay at home on their own. While they acknowledge that staff were probably concerned with their safety, they felt that they are adults and should be treated accordingly.

Some verbatim comments in relation to independent accommodation and group housing illustrate the views of participants as follows.


Independent Accommodation

I share a house with B. The staff comes in the evening and they go home at night. I put on the dinner myself and put on the cooker myself. That is what it is all about, living independent, being able to do things yourself and not waiting for staff to come in. I can do most things for myself, including cooking and setting a fire. The support worker comes in to see everything is all right. She doesn't do anything, just have a cup of tea and a chat (smile). We are all right, sure. I got a cat because the dog was running out into the road and I mad about her and she is very good. She doesn't cause trouble and just sits there in the evenings. I love animals. They are great company if you are watching TV.
I live out in independent living. I wash and cook myself. I don't have to wait for the staff to cook for me. I cook my own dinner and my own tea. I am able to do everything and I pay my own bills for the house. I have emergency response in case anyone comes to the door. It records to see who is outside. I am safe. I have staff up to 10 and I am on my own after that. I have 4 bedrooms, 3 showers and a bath. I live on my own. I love it.
I am happy where I am in independent living. I am happy on my own. My support worker takes me into town and goes with me on holidays. I go into town on my own on Saturdays. I am allowed to do that. I am independent enough now.
I live in an apartment. I know the HSE might think it is more cost-effective putting people in a house with 5 other people but in the end it isn't. People get challenging behaviour from living in crowded houses. I like living alone, it was my choice, and lots of people don't have a choice. There is not enough places for people to live alone. People should be given more choices. I would also like to see more direct funding for people living alone.


Group Housing

I got new house and happy living there. The house got done up and I got a grant. I am living with one more fellow and there is staff who come in and cook dinner. I cook my own dinner - meat and fish. I used to live in a house with 5 people and when we went to the shops, we all had to hop into the bus. I didn't like that. I wanted to stay and watch a football match but I had to go - 'You get on bus, you get on bus, you get on bus'.
You have to come in at this time and to have a bath when I don't want a bath. I want a bath tomorrow. The same with dinner - you have fish today but I don't want fish, I want steak. They take the kettle away at night (for safety) and you can't make tea before you go to bed.... There is too much safety at times. It has gone over the top. People should be allowed to make mistakes. There is too much control. You have to give people choices and be able to make mistakes.
I live with six people in a group home. That's too many but I like the house. People wanted to move me out of the house but I told them I didn't want to move. I want to stay here.
I want to stay in the hostel. The staff and lads are great. We have parties and nice meals and we get chocolate, biscuits, tea and coffee, and we go to mass, to the shops, and the pictures. We have a helper to go with us.
I live with 10 people - two fulltime staff. I am happy there
I live in Connemara with 4 people with disabilities and 2 staff. They cook and clean. I don't live independently. I would like more freedom. There are too many bosses, too many policies and rules.
I hated going out in the bus all together. It gave us a bad name. People were looking at us in Dunne's Shopping Centre. I had to go around the shops and I hated to do that. I wanted to stay at home and not traipse around the shops.


2.5 Living Independently

Approximately half of the participants would like to live independently as they believe it would allow them greater freedom to do what they want, to go where they want (provided it is safe), and give them their own space. In order to live independently most participants felt they would require assistance with various day-to-day activities, such as shopping, cooking, cleaning, transport and budgeting. Some also mentioned the importance of having a job where they could earn money and feel independent.

Living alone can be stressful at times but nothing, it would appear, which can't be solved by a little retail therapy!

Sometimes you might get a bit upset and a bit anxious but everyone does. You don't know why you are upset or if there is something in your head and you don't remember what is in your head. If I am worried about something I would talk to staff and they would help me to see what is wrong. I go shopping for the house- I make out a shopping list so that I know what I need. I can do all that myself.


Those living independently at present said they don't have problems paying their utility bills through the local Post Office. Their lifestyle enables them to have a space of their own, where others have to knock to gain entry and where their belongings are safe and private. Some of the older people said that this had not been their experience in previous accommodation.

I would be afraid someone would take my CDs. I would be concerned if there was somebody sharing. That's why I like living on my own, I have all my own personal stuff. It is all private. You have your own TV and radio. It is all your own stuff and you wouldn't want anyone touching it if you weren't there.


A number of the younger participants expressed the wish to live independently on a number of occasions, even though they are aware of some difficulties, including opposition from their families and the need for outside support.

I would like to live alone but I am no good cooking things. When I get older I would love to live in a house with one of my friends, people without a disability. I love cooking but someone helps us in Prosper to do the cooking and my mam cooks at home. I cook something healthy and something unhealthy. I love steak and chips and pepper sauce but I couldn't cook that. My mam cooks that. I know how to make a sandwich. I need help cooking a pizza. I know how to clean the house and how to clean the kitchen but I just don't know how to cook, how to cook a fry-up on the weekend mornings. I love to go the pub with a friend.
I would like to live with friends. I have a boyfriend and we could get a house and I could cook dinner and buy food.
My mam would be worried about my living alone. I would love to live in a house by myself near my mam's house.
Living alone would be different - you would have to cook more and put on the oven.


A few individuals recognised the need for adequate finance and an ability to manage finance if they were to live independently.

There is not enough money if you want to live on your own. The money you get now €160 will only barely do you for the week before you live on your own. You wouldn't be able to survive on that if you lived alone. Things are very expensive.
If you have a bit of money, you are happy enough. If you had no money you wouldn't be too happy. I am working in Supervalu so I get money and I am quite happy with it.
You have to budget for ESB, lights, food and to watch how much you are spending. I got help and it is ok..... You have to look after the house, keep good time-keeping and keep good hygiene and everything else. It is very important to have a shower and wash your hair, personal hygiene. Cook a dinner, sit down, mop floors and clean the bathroom after you. I am doing all that. The staff show me how to cook the meat. They show you how to get out of the house quickly if the smoke alarm goes off. You are not allowed smoke in the house, you have to go out. If the gas is too high when you are cooking sausages, you have to turn it down in case the smoke alarm goes off. There is a fire extinguisher in the house as well in case of fire.


Finally, when asked what supports they would need to help them live independently, the participants made the following suggestions in no particular order:

  • A dishwasher
  • Cooking lessons
  • Help with crossing the road, checking bus timetables, shopping and going to mass or on holidays
  • Someone to check on you to know you are safe but not to live in
  • A housemate
  • A key to their home and bedroom, where people have to knock before they enter
  • Money they can spend when I want to
  • Better footpaths for wheelchairs and people who are unsteady on their feet
  • More staff to bring people places
  • Freedom to go places alone and not in large groups
  • To meet more girls/boys as friends
  • Staff who are less protective and who allow you to make mistakes.


When asked what they would do with €1,000, most people would like to go on holidays, to give money to their families, buy a house, one participant with complex physical and intellectual issues said he would just like to be respected, to feel important, and to be listened to when he speaks. He does not want to be treated like a book, which is judged by its cover.


2.7 Concluding Comment

The material presented in this chapter, while somewhat repetitive, is designed to document the views and experiences of people with intellectual disabilities in as much detail as possible., thereby remaining true to the underlying spirit of the consultation process. Once prompted with the initial questions identified by the NDA, the participants effectively took control of the discussion to say what was important to them. Unsurprisingly, perhaps, they identified areas that are of importance to most people including work, relationships, accommodation, travel, socialising, using public services, and independent living. However, while they like doing many of these things, they also experience difficulties, many of which are not faced by their more able-bodied counterparts.

Most people with intellectual difficulties find routine tasks difficult and need the assistance of staff and family members. This reality is something they are aware of and which they are willing to address through training and on-going support. However, their life experiences also suggest that there are many barriers to community integration, which are ingrained in Irish society including perceived inadequate transport services, poorly maintained footpaths, the attitude of the public, and services and families that are perceived to be too protective. In the words of one participant:

The attitudes of staff and management need to change. They should not do so much for us. Take more risks with us and let us make mistakes.... Let us stay at home on our own......I find that people who live in the hostel get used to people doing things for them. Everything is done for you in the hostel. When you live by yourself you have to do it right. It is bad that everything is done - making the bed, and cooking meals - because people don't learn how to do things if they live on their own in the future. They wouldn't know how to live on their own if they wanted to'.


The lives of people with intellectual disabilities are relatively straightforward, insofar as they want and need quite simple things to improve their lives and live more independently. Some of these wants and needs outlined in this chapter include support with routine tasks that would enable them to live independently, privacy and the freedom to find their own space, facilities and utilities that are accessible, opportunities to socialise, develop friendships, and go on holidays, suitable employment and money, and opportunities to make mistakes. Above all, they would like to be treated with respect and the option of living independently as perceived by them.

Chapter Three - The views and experiences of people with physical and sensory disabilities

3.1 Introduction

The information presented in this chapter is based on the views expressed by people with physical and sensory disabilities in two focus groups. The groups were held in Dublin and Tullamore. Most of the participants were in their 30s or 40s, and they comprised a range of abilities and disabilities. The discussion focused on two inter-related themes:

  • Difficulties experienced by people with a disability
  • Independent Living

3.2 Difficulties experienced by people with a physical & sensory disability

The participants in these groups identified a number of areas that they find difficult in their lives as a result of their disabilities, including a lack of understanding and thoughtlessness shown by members of the public, access and design issues, service intransigence, transport problems, unequal access to information on services and entitlements, gaps in services, social isolation, and a variety of personal difficulties, such as cooking and driving. They said that while these were not new difficulties and that the situation had improved over the years, they also said that much more needs to be done by everyone concerned.

Verbatim comments in relation to each of these areas are presented overleaf.


Public Thoughtlessness

Examples of public thoughtlessness mentioned by participants include 'nasty comments' made by school children when they mistook a person's lack of balance due to Acquired Brain Injury (AB)I with his being drunk; people who park in disabled parking spots; and drivers who park on public footpaths. These and other forms of public thoughtlessness had been experienced by many of the participants.

A few months ago I was passing a school and the kids were outside smoking and they said, here comes a fellow who is drunk. They thought I was drunk that time in the morning but it is just my balance is bad (ABI). They don't realise what it is like to have an injury. They wouldn't get out of the way when I was passing and made nasty comments. Their day might come too. They should be taught about brain injury and disabilities in school.
My biggest thing is not my disability. It is with the ignorance and arrogance of people. Disability parking spots, for example, Irish people are disgraceful. I believe it is my right and entitlement to be in that spot and I would like to see people a little more tolerant. They have no respect. It drives me demented because I only trying to get on with my life.


Some participants resented the patronising attitude of some members of the public who appear to assume that if you are in a wheelchair, you are also 'stupid'. Some participants felt the situation was worse when the stereotyping was done by an organisation that was supposed to be working on behalf of people with disabilities.

To me, people are inclined to make up their minds an awful lot as to where I should go. I am a wheelchair user. They forget my grey matter is still working and it works the same as it always did. Fortunately it is not affected as my limbs are affected. It would be lovely to get that clear. We are inclined to be put into boxes: they say things like, 'why would he need to be educated'? or 'they will never work again, they are not capable'. But it is someone else who is putting us into that category. I have come across that loads of times in different organisations. MS is the only one that is good as it is run by people who have MS.
It is like my brain is not working. If I am out and someone might ask, is he hungry? I can talk for myself.
It is all down to lack of education. You wouldn't realise straight away that I have a disability (sight) but the minute I say that I can't read something, you can immediately sense a change. They think my brain is switched off - that I have no brain. You can sense it. But when you say it, people are generally helpful. Some will ask, aren't you wearing glasses! They don't think before they open their mouths - it is a lack of education


Access and Design Issues

A number of participants mentioned instances where they were unable to access a building, use facilities, or manoeuvre though streets due to poor design of buildings or a lack of maintenance of footpaths. Others spoke of inadequate access to information, education and transport as being critical to the lives of everyone, including people with disabilities. Some venues, such as the O2 and Croke Park, were singled out as the type of venue that should exist all over the country. While a major part of the problem was perceived to be poor design, they felt it was also a question of lack of implementation of existing laws.

I am in a wheelchair and yesterday during the parade (St. Patrick's day), the cars were all on the footpaths and we couldn't get down the road.
Issues like people parking on footpaths or in disabled parking spots, this comes back to statutory address and implementation. We have parking spaces but not adequate implementation.
In our state of the art hospital, toilets were not wheelchair accessible - the doors open indoors and half the wheel was still sticking out in the hallway! When you leaned forward the hand-dryer would take off. The nurse knew it and she gave me a complaints form without having to ask her and I duly did. They are changing the toilets. The same thing with trolleys that are a good foot above my chair and there was no porter available to lift me on to the trolley. I couldn't get a scan because there wasn't enough space for my wheelchair and I had to go to Beaumont to get it done. It is only a new hospital and that shouldn't happen. The worst thing is that not enough thought goes into things for people with disabilities, even after 7 years in college to become an engineer. Most things are functional rather than suitable.
The usual problems when lifts are not working or you have to remember if the toilet is accessible in that shop. How much did we spend on Dundrum and yet the toilets are way too small - whoever designed them!
You have to constantly check how many steps are in buildings you visit or friend's houses. If there are too many steps, you can't go. I would phone ahead.


Service Inflexibility

One example of service inflexibility mentioned by a participant included the requirement by one person to use a day centre, which was less convenient for him and further away from his house because he was located in a different region. Another person was frustrated at the amount of paperwork required when looking for specific entitlements.

A problem for me is where the Offaly Resource Centre is located. It is located miles from where I live. We have to come across the worst bog road in the country to get to it. I live 14 miles away from the resource centre in Athlone and the HSE regulations mean that we are in different regions. I attempted to get going to Athlone but I have to go where my bus goes.
What has come to the forefront of my mind in recent years is flexibility of service. We have to make our services more flexible to meet our needs as they arise. I am finding that services that are geared to helping people live independently are very structured. They start at certain times and finish at certain times but as human beings our needs change from week to week and even day to day. Increasingly the services have to be wrapped around us rather than us around them.
I tried for mobility allowance but just getting nothing but my disability allowance. In order to make my life independent I need help with mobility and I don't have enough stamps on my PRSI. The number of forms you have to fill out is unbelievable and I wouldn't be asking if I didn't need it. I don't know where to go anyone to get assistance or to know what I am entitled to.


Service Gaps

Some participants were dissatisfied with the level of services provided to people with disabilities, while others said they had experienced difficulties by not knowing how to access services they needed.

I am trying to get an occupational therapist since October last but nothing has happened. I never asked before, even though I could have and it is not because I am proud but I just thought I could get on with things. Now I can't and my situation has changed since my partner has gone. I am afraid of my life to go out in the frost in case I slip. I did fall and because I had to get a plate and six pins I am scared to go out. It has made me nervous. So I am not really independent and I need someone if I go outside the door and I am getting no help because I don't this or that criteria. I am like the forgotten woman.
There is no one-stop shop you can go to and see what you are entitled to. Basically people find out things by word of mouth, which is wrong. I know there are a lot of organisations to help you but you find out almost by accident that you can get this grant if you do that. There is no direct place to know what you can get. I would like to see more disability groups linked in together and information could get to people who need it.
When you go somewhere they tell you have to go somewhere else but who? They look at you as if you are just being cranky but you are fed up going from Billy to Jack - exactly - you get browned off.

Transport

Some participants said that people living in rural areas were most unfairly treated by transport problems, including infrequent services, difficulties getting on and off public transport, and accessing taxis that are wheelchair accessible. One woman with very poor eyesight had to take two buses to attend the discussion group, the first of which was two and half hours earlier, while another woman has to phone ahead when she wants to get off at a local rail station. Unfortunately, sometimes help is not available and she misses her stop.

Transport is the biggest issue, especially when you are living in a rural area. Today I had to get two buses to get here and I started at 7.45am. I don't mind but the bus is not being used that much. There were just two of us on a 52-seater bus. My fear is that it will go. You have to think outside the box when using a bus. You plan your life around the time the bus goes at. There is no other public transport in my area. In the past 20 years, buses have come on leaps and bounds - greatly improved but it took time for me to get confident and to ask people if you need help.
I can't use right side of my body and I live in a rural area. My partner used to drive me everywhere but he is no longer around and I can't afford car. I can walk and try to do what I need to do but I need someone with me. If I go shopping I have to take a taxi or to have someone with me. I need to hold the stick and I can't use my right hand. I can get on a train by pulling myself up but I can't get off without help. When I get into the main station and I have to ask people I don't know to help me get off a train, I feel so small.
My only experience is with a wheelchair, where you have to wait for a ramp to get on and off.


Others felt that transport can also be a problem in urban areas, with problems such as, steep ramps to negotiate on some buses, lifts that don't work at rail and Luas stations, buses that are not accessible, and large gaps between trains and platforms. One participant had used the Luas to travel from home to the discussion group and found he could not get off at his designated station because the lift was broken. He considered this to be a normal part of travel in Dublin. However, most people felt that considerable improvements had taken place over the past number of years.


Isolation

Most participants felt that isolation is a major problem for people with disabilities, especially if they live in remote areas and depend on public transport or their Personal Assistants to bring them places. The service provided by Personal Assistants can be problematic if the Personal Assistant is unsuitable or if they won't or can't carry the person with a disability in their cars due to insurance issues. Others believed that some nightclubs used insurance as an excuse to restrict entry to young people with disabilities.

While some of these participants were in a relationship, most were not. When asked if they would like a relationship with someone of the opposite sex, most replied in the affirmative, although without much hope that it would ever happen. Relationships were difficult to find due to their disability and the unreasonable boundaries that are placed on relationships in their service and by their parents. A personal lack of confidence and a tendency for some people with disabilities to place too much emphasis on their disability are also factors that were perceived to inhibit the development of adult relationships. Few participants used social networking sites, partly out of fear and a lack of computer literacy.

It would be nice to have love in my life. My disability does hold me back in ways.
You learn so much about boundaries in the service and in school and at home that it seems to be all about boundaries and not enough about the people. They don't treat people with disabilities like adults and when it comes to relationships it manifests itself as you can't do that. Just because you have a physical disability that you can't have a sexual relationship. I think there is a presumption out there that just because you have a disability, it is not plausible. That is where society needs to change.
Boundaries in the service and at home. Parents hold you back a little. This is very disheartening. It is very difficult to get out to meet someone and mingle if you are a wheelchair user. Most people meet someone when they are out in a bar. It is tricky when you are in a wheelchair.
I find all these boundaries and political correctness and appropriateness stupid. They have kicked in for everyone, not only us with disability. We thought it was a good idea but it is not. You have to think if a person is a service user or a staff member or even if she is male or female before you talk to them.
You can't go out socialising with staff. We go out on social evenings but we have to be home before 10 o'clock and I am 33 - treated like children.....I would like to see what would happen if the staff member would not treat us like babies.
Some staff concentrate on rules more than others......I think they need more training.


Personal difficulties

In addition to these broader issues, some participants also have problems in their personal lives with washing, dressing, shopping, finance, cooking, driving, using car parks, access to gyms, going to pubs and cinemas, going on holidays and managing money.

I need someone to carry my bag. If you do ask, staff in supermarket will help you. I try to do what I can but I can't.
I don't have enough money. The cost of bills - people tell me that things cost too much. I know how much things costs and how much change to get and to ask for a receipt. I always check the receipt and the change.... I would have difficulty with money but I am getting over that.
I have limited hand movement so trying to take a ticket from parking machine is very difficult or putting coins into machines that are at the wrong height
The Personal Assistant helps me in helping me get up, get washed and dressed.
I need help with looking after bills and maybe help with cooking. I can cook a little bit and it is nice to cook for yourself and not having someone else do it for you.


3.3 Independent Living

Independent living was perceived by this group to be primarily about choice and control. They felt that it was about knowing what you want and having sufficient support and resources to ensure it happens. However, they also acknowledged that independent living was not always about doing things for yourself and that it often entails 'knowing what you want and directing other people to do what you cannot do'.

Making your own choices is important.
I live alone with a Personal Assistant service and it is good to have independence and responsibilities. It may sound strange to have your own bills and your own things to worry about. Just like everyone else.
Independent living is not about doing everything for yourself. It is about knowing what you want and directing other people to do what you cannot do and that is about a personal assistance service, and to have the Personal Assistant service arranged in such a way that they meet your needs rather than the service provider.


Two males in their 30s who live at home with their parents, were quite happy doing so, even though they were anxious about the future when their parents were no longer able to care for them. An issue for one of these individuals is that he lacks confidence in his abilities, preferring to depend on the support of his parents and staff.

I live with my mam and dad and my dad does whatever I need doing. I would like to think that although ideally I would still like to be living with my mam and dad, life doesn't offer you that and one day they will not be around, I will probably go to shared accommodation or somewhere like that - a group home. I would like to live with a group of people with same disabilities as me, or they don't have to have a disability but it would be nice to have the same disability so that you are not the only one. You would all help each other. Age shouldn't matter
I am still at home. I know my parents won't live forever but I would still like to be living where I am at home. God forbid when they pass on, the house is left to me in the will. I would like to be where I am with lot more Personal Assistant support when that needs to kick in. The Personal Assistant can live in but I wouldn't need anyone else and the Personal Assistant would have their own boundaries


One participant had moved into his own apartment when he realised his parents couldn't manage and he would recommend the change to anyone in similar circumstances.

I did live at home for quite a while but then my parents couldn't manage as they got older. My father is now 68 and there is no way he could manage. I am so relieved I moved out into my own apartment. If I could give advice, and I know you are happy living at home, but a time will come with your parents can't manage. I am happy now in my apartment. It is strange having a Personal Assistant and you have this person in the room with you but if you want to be alone and watch TV they will go down to their own room. You have to take charge of your life. You could just sit there all day and not do anything. I need a Personal Assistant because I can't do much on my own without assistance. It is all about being in control. They know their boundaries.


A woman in her 30s said she would like to live in her own apartment but that her parents would not approve.

I would definitely like to live out in an apartment on my own because I am too independent. My parents are too over-protective and although they kind of want me to live on my own, they don't really. It would kill them but I am over the age when I should be living by myself. If they want to come in and visit me, fair enough.


Other obstacles to independent living mentioned by participants included a wish for privacy, a lack of personal confidence, and practical difficulties, such as looking for an apartment and completing forms.

I am a very private person and wouldn't like a Personal Assistant. I want to live private and do my own thing and at my own Personal Assistant. I have never had a Personal Assistant in my life and wouldn't be able to now.
It is confidence mainly. I feel when people look at me, they think I should do more for myself, like go on my own and not have buses take me everywhere. We have some transport training in Enable Ireland on how to travel on CIE buses/ Dublin Bus and how to be on a bus and I should be doing that but I think a lot of it is to do with confidence. I am a very nervous person, say going on the ramp. At 36 years of age it is unbelievable and I am a man as well. I feel that if I fell off on a badly marked path or getting off the bus I would be very embarrassed if I broke something. I could get up all right but it is all confidence. I can dress myself and get in and out of my chair. I can get in and out of the bus and drag myself onto the seat. I can dismantle the wheelchair and fold it up myself, the basic things. I could try and do more but I think it is a confidence thing. People have said to me in the past, and rightly so, and my parents are trying to get me to do things before they go, to get me as independent as I can. They taught me all I know and they would like me to be more independent. I don't and I should.


One of the biggest fears for people living independently with their families is that they will eventually end up in an institution.

One of my biggest fears is that I would end up in a home - that a time will come when this thing becomes too big and my family won't be able to manage. Families are not there to be our primary carers and support services should be there. As we get older they should kick in more.
The things that worry me are the services that keep us independent and out of institutions. If they were to be cut to the extent that we can't live in our own homes. Most of us have families that give us help they are not supposed to do. Not only that we would get Personal Assistant hours but that they would be quality staff, people trained properly etc.


Other fears highlighted by participants included the loss of Personal Assistant hours and benefits.

I looked for extra hours and they ended up cutting my hours. I am terrified of losing more hours.
What would happen if you managed to get education and a good job and something went wrong. You would have some job getting your benefits back - you better believe it. I would be scared of getting a job.
Independent living means different things for people at different stages of their lives. Thus, while a person with a disability may not need assistance or choose not to use services when they are younger, their needs and circumstances may change when they get older. However, the system that exists in Ireland makes it difficult for people to 'join' later in life.
I didn't bother anyone and just on with my life. Now I am nearly 50 and it is paining me. I worry about what will happen when I get older.
Disability has to be seen in life-cycle approach. An independent living life is an integrated life in the community and not in the home. Home-help is just the start of independent living but to make sure we are not confined to home we need services that help us integrate into community. A Personal Assistant to bring me where and when I want to go, be this socialisation, education or employment.


One participant felt that more control over his disability payments would help him live a more independent life.

One way of promoting independent living is to give us choice and control, and one way to do this is to give direct payment so that we will have the means to buy our own services. Important that we understand and that the Department and the NDA does independence does not mean the self-employed model. This is the UK model where you get the money and you end being the employer also. But in Sweden, most people are not the employer. They have the control that comes with having a choice but without the hassle of being the employer. It means more than that - it means us contracting services and having the means to do that. For me to be here at 10am, I need help to get ready - to wash, dress, use the shower etc. What time does a person start work at. A public health nurse doesn't start work until after 9.30am. If I need to be in my work at 9.00am I need someone coming in at 7.30am at the latest. It is about getting the services to be realistic and flexible, and giving us the choice and control. I had people coming in at 8am for 20 years and that worked pretty well but now in negotiation with the HSE to get a replacement and they are faced with their own inflexibility e.g., Public Health Nurses start work at 9.30am. There is a whole process that has to be gone through.


When asked what would help them live more independent and better lives, participants mentioned a number of things including training in how to do things for themselves, such as cooking; opportunities for them to have more input into their lives; more Personal Assistant hours and a more flexible Personal Assistant service; equipment, such as hoists and wheelchairs; grants to adapt their apartments; accessible places and transport; to be treated as normal people; and more control over their funds

You to have more of an input into your future and that you could decide and not others - forced into nursing home. You decide what you need.

3.4 Concluding Comment

The views expressed by people with physical and sensory disabilities are clearly outlined in this chapter through the use of verbatim comments and they require little additional comment. Some of the difficulties they continue to experience in their lives include a perceived lack of understanding and thoughtlessness shown by members of the public, access and design issues, service intransigence, transport problems, unequal access to information on services and entitlements, gaps in services, social isolation, and a variety of personal difficulties, such as cooking and driving. They said that while these were not new difficulties and that the situation had improved over the years, they also said that much more needs to be done by everyone concerned, especially services that have a specific disability remit.

Social isolation would appear to be a critical and increasing problem for many people with disabilities, particularly if they live in remote rural areas. This problem is compounded by difficulties associated with the development of personal relationships, some of which are personal and others the result of families and service providers that are perceived to be too protective.

In addition to these broader issues, some participants also have problems in their personal lives with washing, dressing, shopping, finance, cooking, driving, using car parks, access to gyms, going to pubs and cinemas, going on holidays and managing money.

Independent living was perceived by this group to be primarily about choice and control. They felt that it was about knowing what you want and having sufficient support and resources to ensure it happens. However, they also acknowledged that independent living was not always about doing things for yourself and that it often entails 'knowing what you want and directing other people to do what you cannot do'. The provision of adequate resources and assistance with routine tasks would represent a significant help for many of these participants in living independent lives.

Chapter Four - The views and experiences of self-advocates

4.1 Introduction

One group comprised a number of young adults in their 20s who have received training in self-advocacy. Each of the participants are currently receiving supports from a service provider. Two of the four participants had profound speech difficulties, resulting in fewer words but nonetheless strong sentiments being expressed. Their views are summarised in this chapter under the following headings:

  • Activities participants like to do
  • Difficulties experienced by the participants
  • Activities participants would like to do
  • Independent living

4.2 Activities participants like to do

The participants said they like the activities they do in their service, such as literacy, numeracy, computers, home management/cooking, personal development, community placement, drama and going on work experience. They like these activities because they do them with their friends in a safe and familiar environment. They also like watching TV and surfing the web, going out to coffee shops, writing, listening to music and watching sport.

Unlike the men who don't like shopping for clothes, the women enjoy shopping for clothes and meeting their friends in the day centre. Both of them usually shop with a family member to help them select clothes that suit them and to take care of the money.

My sister goes with me. I pick what I want but my sister does as well. The clothes I would like, she might think they mightn't suit me. So she comes with me and picks out my clothes. I go home with clothes I like once they fit me but I would need to have someone with me to pick out right sizes. I am not trusted with money because I am very bad with money, a no-go in that area to be honest..... I buy my own clothes but I go with my sister who doesn't agree with me. There would be holy war in the shopping centre and sometimes I wouldn't agree with her but for the sake of silence and peace I give in so that everyone is not looking.

4.3 Difficulties experienced by participants

Each of the participants had experienced difficulties that were directly related to their disabilities. Some have mobility problems and consequently experience difficulties walking on footpaths that are poorly maintained and also when taking buses. Those in wheelchairs are dependent on accessible transport or their own power to get around. Everyone found it difficult to see bus numbers and to get on and off buses.

They also had difficulties socialising, due in part to the mens' very poor verbal skills and the profound nature of their disabilities, which makes movement difficult. One person uses a computer to communicate with people while the other needs a Personal Assistant or family member to interpret his words and gestures. Both need someone with them at all times to help them wash, dress, shop, eat and so forth. However, while they acknowledge they need assistance, both men felt that socialising with their peers is made more difficult by the fact that they always have someone with them. None of the participants are not allowed to go into town on their own.

4.4 Activities participants would like to do

Socialising with people their own age

Each of the participants would like to socialise with people their own age and to do things that 'normal people do' and without people 'looking at you'. However, the reality is that they have few opportunities to socialise because of their need to have someone with them at all times due to their problems with mobility, communication and in accessing some buildings.

No one makes plans to go out at weekend - they mostly stay in their own homes. They have nobody to bring them to meet each other or friends from the service. It is boring and frustrating, especially when you are on a summer break for two weeks. It gets really boring because you have your Personal Assistant for only one day a week, that's all. Manpower is a big thing, to have someone with you and bring you places.

The men would definitely like to meet women their own age but would not disclose the nature of the activities they had in mind! They would also like to go to sporting events with other guys or, in the case of one of them, to go to a play.

The women expressed a strong interest in meeting other women to 'go shopping, go to cinema, go out to lunch, meet up at night time if that is possible, hang out and have fun, chat, and do make-up'. They generally don't meet anyone their own age outside the day centre. When asked what is preventing them meeting more people now, one participant said she was not allowed out on her own in case anything happened to her.

We are not allowed, you need someone out on our own, and we need someone with us at all times in case we fall but anybody could fall. I am not allowed out on my own, to meet up with my friends or go to town. I want more freedom to meet up with my friends in town or to meet Marian to go to the cinema and just do what other young people would do. To make it happen, I would need to say it first of all to my mam and dad. I am not allowed out without them knowing who I am with, where I am going, what I am doing, and what time I will be back. In the service I always have a staff member with me. I would like more freedom on my own. I would really like to go into town on my own. That would give me more independence. I would love more of that.


The other woman agreed with these sentiments and said her situation was very similar.

No-one would allow you to go on your own. I think when you have a disability people think you can do nothing. People don't understand what we need.


Both women would like to go to an agreed location that was safe and interesting, such as a shopping centre, with a staff member, who would then leave them alone for an agreed period of time and arrange to meet them later. However, they have never asked for this to happen because they feel such a request would be rejected. The girls also expressed an interest in going to a gym 'just to see what it is like'. This would allow them to get fit and possibly some talent spotting also! However, while each of the participants would like to have a boyfriend or girlfriend, the two girls were of the opinion that this would never happen for them because of their disability.

For me personally, the disability would come into it. I am sorry and I don't mean to bring my disability into everything. I would say it is something I won't be able to change. It will stay with me forever. I don't think I will ever get married or have kids. I would like a boyfriend.... I do want one but I think the disability will hold me back. I don't think boys look at people with disabilities and your parents hold you back from meeting people.


Another factor that inhibits their social lives is their belief that people would look at them as if they were strange. Unsurprisingly, none of these participants like being stared at.

I have had people come up to me and stare at me and ask me what I need the stick for. I have explained all that to them. I am not ashamed of my disability now. I was but not anymore. I don't care what people think of me. That doesn't mean that I won't explain to people about my disability if they ask me because I will but I don't like people staring at me and asking me what I need the stick for in a not-nice way. Small kids do that to me as well but I don't mind them....They treat us like kids basically. Mothers and fathers tell their children not to stare. That makes me feel I have a disability.


When asked what, if anything, would help them to meet more people their own age, one of the men said he would like more Personal Assistant hours, as he would need a Personal Assistant to help him drink coffee or eat if he went out to a café. He would also need the assistance of a Personal Assistant for an extended period of time to travel to see shows. His current allocation of hours does not allow for this as often as he would like. Although he is confined to a wheelchair and has very poor verbal skills, he has already travelled to a number of foreign countries.

One girl said she would love to go to Dublin for a day but that her Personal Assistant wouldn't agree to it because she didn't have enough hours.

I would love to have a Personal Assistant to - this might sound selfish - to take me places I want to go, if that is ok with them e.g., town, Mahon Point, the cinema, those kind of places.

Another girl said she would like to go on holidays with a Personal Assistant and without her family.


Work

Everyone would like to work in a normal job and some had ideas for starting their own business. One young woman would like to open a 'Doggy Crèche' but when she told people about the idea, they thought she was 'off her rocker!' She was also told she would have to go to college and to get work experience and money, all of which would be problematic for her.

I do want to open up a business of my own, something for dogs. Keep dogs safe, like a baby-sitting service where you can drop your dog in at 9 near where you are working and pick them up at 5 when you are going home (Doggy Crèche).


Another woman would like to work as a receptionist or to work with children. One problem is that she would need to get a qualification and she can't lift children.

I would love to work. Two things. One is a receptionist in a good working atmosphere with lots of people where I could get to know people and they are not all quiet. I hate all that silence and stuff. The other idea is working with kids. The downside is that I cant lift kids or stand around with them. You would need Fetac Level 5 to work with kids and that is a no-go for me. I can hold babies but I can't hold them and walk around. I have completed a few things in Fetac. I told a couple of people what I want to do and they said that Fetac Level 5 would be very hard for me to do as there is a lot of lifting and bending. First Aid would come into it and that is not possible for me. But I would like to work in an office and meet people coming in and out in reception. They told me I would be well suited for that.


Neither woman would mind working in a place where they were the only person with a disability. However, they did foresee problems with their parents who, they believed would be 'afraid' of what might happen. They would 'want to mind me' and ask a lot of questions about the work. One girl felt she would like to work even if her parents disagreed, as she felt that they 'were holding me back because they want to protect me'. The staff are also perceived to be overly protective at times.

One of the men would like to work as a mechanic or something with cars but he knew that his poor coordination and verbal skills would make this difficult. The other man would like to become a playwright. The primary reason cited by all four people for wanting to work is to earn money and respect, to show people that they are not just people with a disability and that they are normal people doing normal work.

Cook

Both of the women and one of the men would like to cook more than they do at present. They are able to prepare snacks and light meals but they are not trusted to cook hot meals in case they hurt themselves or burnt the house down!

I would like to learning how to cook. If you knew how and if people trusted you, you could cook at home. My parents don't really trust me. I like to make scrambled eggs and tea but never dinner. I would like to do Spaghetti Bolognaise. Even if I told them I had learnt how to cook in the centre, they wouldn't let me cook at home.... The only thing I can cook at home is toast, cup of tea, beans on toast, and probably an omelette but one of my older sisters would need to be there. My parents would not let me next to near a cooker or deep-fat fryer because they would think I would burn the house down. I would like to give it a go.

4.5 Independent Living

They would all like to live independently, either on their own or with another person, and their housemate need not have a disability. If given a choice as to the type of accommodation they would prefer, the participants were open to living in an apartment or a house. They felt that they would all need support if they lived independently, partly to help them with physical tasks and partly for companionship.

Someone to come in and help with cooking and lifting heavy stuff. I can't lift heavy pot of boiled potatoes. I would need help with other stuff as well. I am independent but only to a certain point. I would not need anyone living in fulltime.
I would like other people with me because if you are living on your own you might get down or depressed. Someone with you - could have fun and chat.
We are independent up to a certain point and we cant do everything on our own and that is where we would need to call someone for help but good idea.

They realise that part of living independently is making mistakes and they would like to be trusted enough to make mistakes.

4.6 Concluding Comment

The four young adults that participated in this group of self-advocates were very clear in their wish to live a more independent life, which would comprise more socialising with people of their own age, opportunities to meet friends without the supervision of staff or family members, the option of working in a job that they liked and which would allow them earn money and respect, help with routine tasks such as cooking, more Personal Assistant hours, opportunities to travel, and live apart from their families. They recognise that this choice will entail difficulties and that they will need support. However, similar to the other groups, they would like the opportunity to make mistakes if that meant staff and family members trusted them.

Chapter Five - The views and experiences of parents of children with disabilities

5.1 Introduction

The information presented in this chapter is based on the views expressed by parents of children with disabilities in two focus groups. The first group was held in Sligo with parents of adult 'children' with a variety of disabilities, while the second group comprised parents of younger children with physical/sensory disabilities. Within these categories, the participants represented a wide range of disabilities. While some of their children had a specific disability, such as Cerebral Palsy or Down Syndrome, others had more complex needs with a variety of disabilities. Some needed a wheelchair while others were 'physically fine' but had very limited speech or hearing. While one individual ran his own business, with the assistance of his mother, others were more or less totally dependent on their parents and other carers. One mother described her daughter in ironic terms, as follows:

My daughter has a fierce disability and so too do her friends. They have done very well and are part of the community and they don't just sit on the bus. They are very disabled people. Some can walk and some can talk. It sounds strange but between them they are a whole person

What unites this diverse group of parents, according to one parent, is that 'none of our children could live without care' and the belief that 'nobody could do what we do'.

5.2 The life of a parent of a child with a disability.

When asked what it is like to be the parent of a child or young adult with a disability, these parents described a life of hard work, exhaustion, fear, hope, despair, anger, isolation, intimidation, commitment, acceptance and love. Some felt abandoned and isolated, while acknowledging the support provided by services and especially their families. They were tired of having to 'push' for everything their child needs and, in their opinion, entitled to. Although many parents are still relatively young people, the fear of what would happen to their children when they die seems to pervade their lives, especially the parents of older children with more profound disabilities.

Most parents are sceptical of government initiatives and proposals for change because of the shortage of resources generally and staff levels in particular.

We have been fed on a diet of independent education plans from the school and person-centred planning, which all sounds wonderful, but it doesn't happen because they don't have the staff to carry out the person centre plan. It sounds wonderful and it is wonderful. We all want person-centre plans but the only place they get that is at home because they have to fit in with rotas, and with staff. It all comes down to money. If you don't have staff, you can't do things. There are good laws in place but many not observed e.g., people being sent home from group home when they are sick - this is not supposed to happen.


One woman described how intimidated she felt when she had to face a panel of nine people in a service to discuss her son's future. Another mother described how difficult it is proving to get her teenage son into adult services and it appears to her that 'no-one wants him'. Although she feels that he is very happy in the service he is in at present but that in four year's time when he is 18 years of age, 'the walls will come tumbling down'.

He is very happy where he is. He loves going into school, he is with his peers and he is very happy. He comes and goes by bus. There are four years of this and then the walls come tumbling down. They don't know what service is out there for him. I am starting to look myself. I would love for A to have some form of independence. I know I will not live forever. If I live until I am 70 I won't be able to manage him - he will be a man with all his disabilities. These are all the things you think about and you say, good God, and it keeps an awful lot of people awake at night. What is out there for them? I rang another service to be told he has a lot of complex difficulties. I said I know. I was told the catchment area doesn't apply anymore but what is the point of having catchment areas if they don't apply. I will fight the cause. All you get is negative - we don't have anyone who is blind - they don't want him. I would be very happy if he got into a service that he is as happy as he is in today. For all we say about the service provider, the children are very happy with the service. They are with their peers and they have some semblance of a life in there.


As to the future, many of these parents believe they will still be very much involved in the lives of their children in 10 year's time.

We will just be much greyer! We won't have the energy for it. We will still have to do it. We would like to fade away, just as we will be fading! The deficit for our children will get much bigger as they get older and we have to do something that will re-balance it compared to their peers without disabilities.
I don't see ourselves ever out of our children's lives until we die. I know we are in our other children's lives but not to the same extent. They are not dependent on us. There is disengagement. We have to keep a watching brief. I don't think it is possible they can ever be independent, totally. I wouldn't like the rest of my children to take it on as a burden.

While some support staff are perceived to be very caring, others are perceived to be content to do the minimum, if even that. Depending on the level of disability experienced by their children, some parents were more positive than others; some were hopeful that their children might be supported to live independent lives, while others were doubtful if this could ever happen outside the home environment. For the most part, these parents believe that they will be 'in' their children's lives until they die. They also admit to being possibly too protective of their children but justified this on the basis that a parent knows what his/her child requires better than anyone else.

Finance is a significant problem for some parents, particularly where they depend on the disability allowance for the care of their child. Their concerns ranged from the considerable costs associated with the care of their children to smaller but nonetheless tangible costs of paying a babysitter. One parent wondered if a discretionary fund set up by parents would affect their child's disability allowance, with the result that the people putting in the money would have to pay more. Another was concerned that her child's allowance would be affected if they put their child's name on the house.

The verbatim comments of some parents illustrate the thoughts and emotions experienced by these parents when discussing the lives of their children.

I know my son and I know his needs.
No one can look after my son like his mother.
It is a life of constant worry.
It is very tough on mothers especially. They usually carry the can. It is the logistical things - the carrying to and fro; there is no allowance made for the disruption to family life. The lives of the other children are disrupted by everything and this is never taken account of.
A common thread amongst parents is the fear of what happens when they die, even if only 40 years of age.
I have a wonderful family and they have a place for her in their homes but nobody could do what we do.
The HSE is a powerful pebble delivering services. We are just a small pebble that are now beginning to make a ripple.
A lot of people have jobs but we have to do a lot of their work. A lot of counsellors running around but God only knows what they do. The lady from adult service makes decisions for my daughter without ever having seeing her..... It is the same for my son. He doesn't speak and she doesn't have sign language and we spent half hour filling out a form and she didn't even bother to say goodbye to him when she was leaving. She was there for him but she didn't even bother to talk to him. It is a paid job and we do the work. They just want to put them into a pigeon hole. You sometimes feel they don't care.
It has been a lot of hard work. We have put a lot of hard work into it and we will until we die. We are getting old.
There are a lot of little empires around the place - you get tired of being diplomatic.
You have to do the pushing all the time. If the parents or guardians don't do the pushing, who does, and it is bloody hard work. We shouldn't have to do the pushing. I would like to have an agency to ensure person-centred plans are followed. They have the plans but people are not there to implement them. We are short of staff.


5.3 Independent Living

The discussion on independent living evoked different and sometimes conflicting responses for parents, depending on their 'different visions' of what they want and expect for their children. While all parents want their children to live 'normal' lives, where their children could be relatively self-sufficient, capable of earning a living, and living alone or with friends, some parents realised that the profound nature of their children's disability meant that constant care of their children would be required. Parents of children with more profound and complex needs highlighted the need for more structured care, such as the care provided by group homes, while parents of children with less profound needs spoke of the possibility of their children living in independent accommodation with the minimum of support.

A number of parents linked the reality of independent living with a time when they would no longer be able to look after their children. One of the main fears most parents have with regard to the care of their children is what will happen to their children when they are too old or when they die and no longer able to care for their children.

I think independent living is what we aspire to with our children so that we can die in peace. That there is somewhere they are happy and contented and we feel they are being looked after as individuals and not as groups.
Our sense of independent living is that our children will have somewhere to go and we can die in peace knowing they are well looked after. It is all very well getting money to provide a service but you are proving most of that service.... at home.


They believe that independence should mean more than simply catering for a person's basic needs, such as accommodation, personal hygiene, and safety. These parents felt it should also be concerned with the quality of a person's life, such as being able to meet friends and peers, and to pursue activities they wish. However, it would appear that without parental support, this would not be possible.

My daughter is a socialite and she likes being with other people. A group would be good for her - a mixture would be lovely. She fancies the regular men - she is18 years of age. I would love for her to go away on holidays, but travel is quite difficult with her. She loves going out and parties. Two things she wants to do everyday is to go to Mass and swim. No service has taken that and they think that it is I that is bringing her to Mass but I have to explain that it is the other way around. She is adamant she wants to go and if we don't go it is almost impossible to get her dressed. Going swimming is her total release but they would say in the service they would need 2 people to bring her in the wheelchair. It is not that difficult. I have done it on my own and I have got other people to do it. She is non-verbal as well but she does communicate, so we would need people who can work with that.


Other parents would also like their children to meet their contemporaries outside those they meet in the day centre but this is very problematic for most children. One mother said that her adult child had made good friends with others who attended the day centre but that without appropriate transport, their participation in the community was very restricted.

I have two sons. One was never off the phone, going to birthday parties and everywhere, and friends over. The other son with Down Syndrome has been invited to one party in 19 years (outside the world of disability). He is invisible in the community. Even kids his own age would invite his older brother instead of him.


When asked what would help their children live more independent lives, the parents suggested the following areas:

  • Transport
  • A Personal Assistant
  • Accommodation in a community of mixed houses
  • Opportunities for their children to meet more of their contemporaries
  • Services that are more fully integrated and which take account of multiple disabilities
  • Treated as an individual
  • Equal access to services throughout the country.


Some verbatim comments related to these areas are as follows:

Transport is key to their lives. Transport is access to everything for all of us.
Independence is about alternatives. Independent living means different things for different people. My child needs constant support 24/7. None of our children could live without care - it doesn't have to be paid care - some will need nursing care.
A Personal Assistant for my daughter would be a major step.
I would like a community of mixed group in houses, people with disabilities and others without, some old and some young. I could fade away gradually. Initially I could live there and then gradually move away. Something like a complex for old people or a mix of young families who could grow up with her. Independent but with closeness of a community. For people who want to live alone in their own house but who would have the security of having others around them. My daughter needs help to dress and most other things, so she would need a lot of help.
I don't like the way they are just another number in a group rather than a distinct person in their own right. I would just like them to be treated independently and not assuming that everyone has to go to the shops at the same time. In a group home it is important they have a people carrier but not that they are left sitting in it while the staff go in shopping! We have seen it. I think they would be better taking a taxi, at least there wouldn't be so many of them travelling together. I see so many of the buses and you see them outside the supermarket with their ice creams! It is the imagery that this presents that is awful. You have the special schools, the special bus, the special, special, special. It is an industry that is keeping people in jobs.
The first thing is for them to be shown respect. He will need support but he knows that. Independent living = an apartment close to his parents, ladies coming in to clean his place, he would like to go to the pub, and live a normal life with friends.
My daughter would like to live at home. She would like her friends coming over but she needs constant support. I would talk to her about her own house, so I could visit for tea but she wants to live at home.
My son would hate living outside his home.
It is crucial we prepare them for the adult world. Educate them in life-skills, supports in his own locality, empower him work..... Life skills - going to the shops, having money of their own they have to take care of, buying things, etc.
If I had one wish to help my daughter live more independently is that we would have services with staff that are fully trained and which are fully integrated to give a full service to get the best out of a child. Everyone involved in a child's life would work together and enable them to live as normal a life as possible.
For independence, a child will need some form of work arrangement. If they don't have an Intellectual Disability they can become an IT expert and sit at a desk with no problem. Independence comes from the capacity to be employable and to have support through positive discrimination. This will improve their self esteem and also provide them with means to support themselves financially. One thing we heard recently is that if you pass over a house to a child with disability, they may not be able to claim disability benefit as a result which doesn't make sense. I would like this to be removed and for disabled people to have more normal lives.


Many parents expressed concern about the quality of lives that may be possible for their children unless services are enhanced significantly. One mother captured the sense of frustration as follows:

My hope for my son is that he would live in a house with people his own age; that he could live independently in sheltered housing where he would have a life of his own, a life he is entitled to but I don't see it happening. He is getting very frustrated. He wants to be with other people and for me to get out of his face. He needs 24/7 care.


5.4 Social and Community Participation

The experience of some parents is that people with disabilities can become isolated from their communities and peer groups if they are treated as 'special' and placed into services that are geographically and socially separate. This can have long-term detrimental effects on a person's life.

Taking our children out of the community and putting them into special places is detrimental and immediately isolates them from the community networks they need to build up during their lives. They end up being excluded from the community and we had to spend a lot of time helping him build friendships and networks with his peers.


One response, which some parents favour, would be to mainstream more services and to make certain there are sufficient resources and adequate infrastructure to ensure the programme is suited to the needs of everyone. One mother who insisted against opposition that her children attend mainstream school found that everyone benefited.

My children went to mainstream school and if anything, people look out for him. My son goes to discos. He is in the local gun club and he is included in everything. If you put children with disabilities into mainstream school, their peers or community does not treat them any different. It will help people understand disability. My son is not seen as a threat but as an individual with additional needs.
More supports to allow access to mainstream schools and that the educational programme is suited to their needs and they can be included in a classroom and treated equally. That means a classroom assistant. My son had a special needs assistant in primary school, who was there if he needed it. But when he went to secondary school that went out the door. When you get resource hours, you can say what you need and proper communication with parents or primary carers is a big thing. They and the person need to know what is going on.
When my other son finished school, he had options and career advice. When my other son finished school, he had only one choice from a person I had never met or had never met my son. They had no expectations for my son. No one ever said he could achieve what he achieved. The system has failed him. I was given a lavender candle and a stop-clock to deal with the behaviour that was starting to manifest. I was furious. I was brought to meet the multi-disciplinary team to hear what they thought was best for my son. They had never seen him. They told me it was expensive to deliver a service for my son. My son was a number in a system to draw down funds.


It doesn't make sense, according to one parent, for her child to be picked up from her home and brought to a day centre before going to work. Most people go straight to work from home, so why should it be different for people with disabilities.

Other parents felt that mainstreaming would never work for their children due to the profound nature of their disabilities. There is also a danger that parents will be left to fill in the gaps left by mainstreaming. This is what is perceived to have happened with the psychiatric services when a community-based service was promised but never materialised. Some parents also mentioned the long-term costs of not supporting mainstreaming education properly.

The loss of Special Needs Assistants will mean that a lot of children will be coming back to the centres and that is a lot more expensive than using Special Needs Assistants . Our children should have basic rights to Special Needs Assistants if they need them. We lost an Special Needs Assistant for our daughter without any consultation - just a nameless, faceless person who spoke to our daughter for 10 minutes and who couldn't have made a decent appraisal of her needs in that time.
Some parents were concerned about the lack of integration that happens when their children are brought out as part of a larger group, even when they don't want to go.
They are brought out to restaurants and they are supposed to be so grateful for being taken out. They are told where to sit and what to eat. It is insulting. My daughter likes it but when I see her there she is a different person to what I see when I bring her to a restaurant. She has a choice if she wants a drink or not. There she is quiet. They are being brought out as part of their integration into the community but they are not. They are being gawked at and no one is going to approach a table of 8 people with special needs and 2 minders and start talking. Whereas if I go out with my son, it is amazing the number of people who will talk to you or he will step on someone and you will apologise and they will say, ah no it is grand and start a conversation - that is integration.


These parents believe that integration and active participation in the community is made difficult by the fact that many members of the public don't know how to respond to people with disabilities and by a fear of litigation if things go wrong.

I find a great reluctance by people organising sports events to take on a child with a disability and you often have to cajole them and assure them there will be no fault if anything goes wrong. They are afraid of litigation.


A number of parents highlighted the loneliness and isolation of their children who would like to spend time with their peers.

The approach is one size fits all but if you are in a wheelchair and you can't see anyone and you cant talk, very few teenagers want to be involved with anyone like that. My son's social life is his carers and people in school. That's it. It is all people from the service provider and it is very difficult. People come along who are interested but they fall away. Another parents whose son is outgoing and can speak, she says the same thing - there is no-one around. They used to call but they don't call anymore.
It would help if Transition Year programme had a module in a formal basis as part of curriculum to help appreciation and understanding of what life is like for kids their age with disabilities. Sometimes school kids go to play with younger kids but don't think they meet on a peer level. Kids who are profoundly disabled feel lonely and excluded on the basis that they don't interact with people their own age or with similar interests. Internet could address some of this but not the same as person to person.
Teenagers when they realise the disabilities other teenagers have to live with are amazingly obliging and accommodating I find but you have to get past a level of inertia first and once you are past that, they can give a lot.


In some cases, parents felt their children were being labelled by health professionals and members of the public and while it is understandable that members of the public don't know how to respond to people with disabilities, it is much less so when it involves health professionals.

I have heard professionals talking about 2 or 3 'Downs', like Chevrolet cattle. I say my son is a boy with Downs Syndrome, not a Downs. Labels belong to washing machines - not seen as people with individual personalities - it is a very patronising attitude. Change has to happen in the community and doctors, nurses in their training.


Physical access is also a problem for some people, especially when a person uses a wheelchair. A number of parents criticised the quality of facilities, especially lifts in shopping centres and toilets in public buildings, as being inadequate. The lack of transition planning between children and adult services was highlighted by a number of parents as a big problem in helping people with disabilities adjust to new circumstances.

5.5 Service Provision

While most parents acknowledged the important contribution of services to the quality of life led by their children, they also criticised certain aspects of service provision, as follows:

  • Poor Value for Money and Lack of Transparency: One mother felt that she provides a significantly better service to her son for a fraction of the cost to the state for providing a residential place for one year - €90,000 for residential care and another €20,000 for day care. Associated with this is the perceived lack of transparency in the way funds are allocated to individuals:
  • If I had more control over her funding I might be able to buy in care or a companion for her. Good if we were shown how her allocation was spent on her. We have been fighting to know this for years but only now that we are getting some information.
  • The Institutional Mindset: A number of parents referred to the institutional mindset that prevents people with disabilities living more independent lives. One example of this is where group homes display the menu for the week inside the front door or where the TV is left on all day to keep residents occupied:
  • The community group homes are mini-institutions, because as soon as you go in they tell you what the house rules are and when you go to visit someone in a group home you never get past the doorway. It's the barricades and locks in these houses that worry me. I went into a home a few months ago and inside the door was a menu for everyday of the week. Does anyone do that in their own homes and display it to the public. I think that is scandalous.... They are real institutions.
  • Gaps in Adult Services: Some parents felt that the provision of adult services for people whose primary diagnosis is physical or sensory is 'terrible and patchy', resulting in problems for young adults trying to live independent lives. A father added that service provision for teenagers is lacking and that this leads to 'less inclusion' as, without the necessary wherewithal to get them to where activities happen, they cannot get involved. A mother whose son is due to leave junior services feels abandoned.
  • Raised Expectations: One mother currently looking for a place for her son said that when people enter the service her son is currently attached to, 'they have the expectation that their children will be supported all the way through and that there would be some kind of service for them as adults' but in reality, far fewer people get places than expect it. Far better, she felt, for the service to be honest and realistic upfront and let the parent decide.
  • To raise people's expectations and then to leave them is perceived to cause far greater problems for the service and the parents in the long-run.
  • Disability Tourism: This is the expression used by parents to describe the inequality in the distribution of disability services throughout Ireland. The result is that some parents make 'tactical decisions' to move to an area that has, for example, good adult services. This 'lucky bag' approach is not regarded as right and it is compounded by the perceived preferential treatment to areas with senior political representation.
  • Lack of information on entitlements: Many parents find it very difficult to know what their child is entitled to or how to access grants and other supports. While they currently receive most information from each other, they felt that services should provide a checklist of entitlements for all service users, together with advice on how to access them. One parent felt there was a lack of continuity in information due to staff not being replaced and a perceived disinterest on the part of some staff. Another parent who had just recently discovered they were entitled to a grant to modify his house, said that if he had known sooner, his child's development would have been stimulated earlier.
  • Inadequate Planning and Coordination of Services: Some parents believe that most services tend to focus on one form of disability, with the result that children with multiple disabilities are not properly catered for. For example, while the service providers are primarily interested in physical disabilities, one parent felt that 'they are not geared up to deal with language therapy'. Long-term planning for a child's development would also make sense instead of creating a group of people who are over-dependent on disability or unemployment benefits.
  • Staffing: Most parents agreed that resources are an issue for all services and that this can affect the residents.
  • They are always trying to play catch-up and they never have the staff or the resources to move it on. Two steps forward and four steps backward'.
  • For people who cannot communicate, horrific what we sometimes expose them to. That is my greatest fear. You were told that two people were on night duty and you find out totally by accident that there was only one person with six people with very complex needs. Sad. Why weren't you told. It is not healthy or safe. How can you trust them? No-one knows what is going on with our adults in community group homes and housing estates around the country. What regulation can you put in place?
  • There are some people who think it is an easy job. Our children will not be able to tell on them. I saw one woman asleep with a hangover on the couch who was supposed to be minding children. Another was smoking in the kitchen. Our children don't tell and if they do, it is their word against the able-bodied person.
  • A number of parents expressed concern at the perceived lack of monitoring of group homes:
  • They don't monitor their houses. No one knows what is going on in them, apart from the TV going on in the morning! The sad thing is that they have taken away one of the two night staff. That cannot be healthy for the staff or the young people staying there. What happens if anyone gets sick?
  • Lack of Flexibility in Mainstream Medical Services: Parents felt that some medical services could be more flexible in their dealings with people with disabilities, particularly those with known behavioural problems.
  • I was in hospital recently and there were a lot of pregnant women there and I thought this is terrible, they will all be thinking they will have a child with a disability. I asked the nurse if it would be possible for her to get in a little sooner but she just said her appointment was for 4 and left it at that. That is the kind of thinking I find difficult to deal with because it would have been common sense to rush her in and rush her out. She was nice about it but.
  • Recently I was in a paediatric clinic with my daughter (not disabled) and a woman was there with her son who appeared autistic. His anxieties increased over the morning - other children making noise. I told the doctor and suggested him coming first or last to avoid all the stress he experienced. I know when I go with my son, you are so tense and you feel people are gawking at you and you see the worst side of what disabilities can mean. He was courteous about it and said his mother insisted he come here.
  • Poor levels of advocacy: One parent said that services, which depend on HSE funding, cannot advocate for their service-users as they are part of the system. In some situations, advocates are attached to specific services, with the result that people outside these services cannot readily access their services.
  • Piecemeal Nature of Service: While not everyone agreed, many parents felt the service given to people with disabilities is piece-meal and different to that given to people without disabilities. Some service providers make parents feel as if they should be grateful for any service at all.
  • Some VECs won't have anything to do with people with disabilities and others have wonderful programmes to meet the needs of people with disabilities. We have to push the boundaries again - it is up to the parents again. The CEO told me that I was lucky he was meeting me! The tutor told me that she normally doesn't deal with people like me'.
  • Lack of recognition for some disabilities: It can be difficult for parents of children where the disability is not recognised by the public or acknowledged by the state.
  • Few Opportunities for Respite Care: There are very few opportunities for respite care for children with physical or sensory disabilities, whereas it would appear to be a right for children with intellectual disabilities. It can also be the case that people in one catchment area get respite care while others don't.
  • Summer Breaks: Some children with profound disabilities are perceived to be effectively abandoned during the summer break. They are isolated from their friends, most of whom are attached to the same service.

5.6 The Future

Most parents would be content knowing their children were cared for in an environment that was supportive and where they could be with people their own age. In spite of some criticisms, one parent felt that group homes are 'nice houses and well furnished' and that she would like to see her son living with a group of friends and not being dependent on her forever. Others would like to see their children live more independently, with appropriate supports in place.

5.7 Concluding Comment

The different views expressed by parents varied to some extent by the age and disability of their children. In general, parents of older children and those with most profound disabilities tended to be most frustrated with the level and quality of services provided, with most believing that they, as parents, will be central to the care of their children until they die. When asked what it is like to be the parent of a child or young adult with a disability, these parents described a life of hard work, exhaustion, fear, hope, despair, anger, isolation, intimidation, commitment, acceptance and love. Some felt abandoned and isolated by the government, while acknowledging the support provided by services and especially their families. They were tired of having to 'push' for everything their child needs and, in their opinion, entitled to. Although many parents are still relatively young people, the fear of what would happen to their children when they die seems to pervade their lives, especially the parents of older children with more profound disabilities. Finance is a significant problem for some parents, particularly where they have more than one child with a disability or where their financial circumstances are in difficulties.

Independent living means different things for parents, depending on the nature of their child's disability and the parents' different visions of what they want and expect for their children.While all parents want their children to live 'normal' lives, where their children could be relatively self-sufficient, capable of earning a living, and living alone or with friends, some parents realised that the profound nature of their children's disability meant that constant care of their children would be required. Parents of children with more profound and complex needs highlighted the need for more structured care, such as the care provided by group homes, while parents of children with less profound needs spoke of the possibility of their children living in independent accommodation with the minimum of support. Some parents were less than satisfied with the quality of services currently being provided.

A number of parents said their children were socially and physically isolated due to inadequate access to facilities, transport issues, and a lack of understanding by the public. In order to reduce the level of isolation experienced by their children, some parents would favour more mainstreaming of services, provided there are sufficient resources and infrastructure to ensure the services are suitable for everyone. Other parents disagreed, saying that the profound nature of their child's disability meant that they would always need special attention. There is a danger, they believe, that parents would be left to fill in the gaps left by mainstreaming.

While most parents acknowledged the contribution of services to their children's quality of life, they also criticised certain aspects of service provision including, the perceived poor value for money and lack of transparency, the institutional mindset of services, the gaps in adult services, the tendency for services to raise expectations of parents, a perceived inequality in the distribution of disability services throughout Ireland, a lack of information on entitlements, inadequate planning and coordination of services, inadequate staffing levels, a lack of flexibility in mainstream medical services, poor levels of advocacy, a lack of recognition for some disabilities, the isolation of their children during the summer, and the limited opportunities for respite care.

Chapter Six - The views and experiences of frontline staff

6.1 Introduction

The results presented in this chapter are based on discussions from two focus groups held in Galway and Tullamore, respectively. The staff that participated in the focus groups comprised a range of professionals including, speech and language therapists, social workers, community coordinators, administration, occupational therapists, transport, public health nurses, personal assistants, and intellectual disability services. A number of salient themes were identified by staff, which will be discussed in more detail in the following pages.

  • The rights of people with disabilities
  • The challenge of working with people with disabilities
  • Service Provision
  • Independent Living.

6.2 The rights of people with disabilities

The topic of rights for people with disabilities was spontaneously mentioned by a number of staff when they were asked if there was anything they felt was important to the lives of people with disabilities. One participant explained why she had raised the subject:

Two things hit me over the past few weeks, which have to do with rights. One was in a newspaper where a mother was complaining about how her daughter with Down Syndrome could not buy a house because legally she is excluded by Irish law in signing a legal contract because of her Down Syndrome. Another legal thing that came up in my work was where a person was trying to organise money to go on a holiday and he was a ward of court and he was told no, he should be living on the money he has and that an x amount of money, which was enormous, should be kept aside for his funeral.


Another participant said that while her service had gone someway towards integrating people into the community, she felt that the persistence of historical practices suggests it has still someway to go before service users are treated fully as individuals with rights and choices.

We have houses in the community and yet the organisation still dictates they have fish on Friday. I know that is very incidental and fish on Friday is fine with service users but we are asking these guys to make important decisions where they want to live, who they want to live with, what services they want to access and we don't allow them to choose something as basic as their menu........... We say their voices need to be heard but how can we ask them really important questions and yet we take the smallest decisions for granted. It is the organisation saying, it is Friday, so it is fish for tea!


A similar point was made by another participant who felt that services 'need to get much better at meeting people's authentic needs' and to address the cultures and practices in organisations. There are 'ingrained ways of doing things' in many organisations and individual staff are naturally reluctant to take risks without the support of families or a higher authority that would indemnify them for pushing out the boundaries on behalf of the person with a disability.

We focus on the needs of the person but unless we change how we do things, and change in vocabulary to bring all the focus around the person, it won't happen. All us stakeholders have vested interests. There are a lot of legacy issues around that which we have to address. The key for me is that each individual's choices are actioned and respected. We put in all the supports and we walk with people and try to make sure we advocate with them. That brings you different places - they go their own places and you travel with them.


Most participants felt that things had improved over the years and that 'a huge amount of learning had taken place in the past number of years around bad practice' but that more needed to be done if the service-user is to become 'centre-stage'. One participant noted how difficult it can be in getting feedback from service users with severe intellectual disability because 'people with intellectual disability never complain and everything is a bonus for them'. Another person felt it is important that everyone is listened to and not only people with challenging behaviour who tend to 'make the most noise'. For some members of this group, communication is key: communication, which is creative and prepared to listen to answers that might not be expected.

It keeps coming back to communication and the need to be creative around that. Asking someone what they want when they might not have the skills or support to answer the questions. That is where advocacy comes in and it is so important they come from outside of us. Communication and a willingness to listen to answers we might not be expecting. We might like to look like a modern service, with all individualised services but we still may not be listening to what the person wants. On paper, everything looks good.


A number of staff praised the role of independent advocates in helping service users access their rights and challenging the traditional practices of services.

People need independent support, no matter how good the organisations are or are not, there is always paternalistic, we know best attitude. It is always there and we won't move forward unless change happens in this area.
One participant felt it was about 'clients' potential in every part of their lives 'whether it is getting up in the morning, or making decisions, or going to work or getting out into the community. A lot of clients, because they come within our narrow expectations of their occupational experience, if only we could allow them a vision for themselves, that would be the most wonderful thing'.


A number of staff felt that parental consent can sometimes restrict the rights of an individual, even when staff feel that the parent is preventing their 'child' from doing something they are well capable of doing.

Sometimes we try to encourage independent living and parents say no; they think they are not ready to go down town shopping alone and not to allow them. You can only go so far and it can be frustrating when you have to stop people doing what you feel they can do, that they are quite capable and independent. Within our remit we have to give parents the final say - it is parental consent. You could have a 25-year old who we know is capable of going from A to B on their own but parents insist they have someone with them at all times. They are treating a person with Intellectual Disability as a child rather than an adult. But we have no choice. They are not allowing them to live - too protected.


Some staff believe that parents are afraid of their child becoming too independent because this increases the likelihood of their child moving out of the service to live in the community where parents believe there are less services. Some parents fear that their children will end up coming home to be minded by them when they will be too old to be carers.

They could be in an institution and looked after very well and then they are moved into the community and the services could collapse around them and their biggest fear is that they will, they are looking at what happened with the psychiatric services. A lot of psychiatric hospitals have closed down and put a lot of patients into the community and taken away all the services from them. They were left to fend for themselves. I read recently that people with very mild ID are sleeping homeless in Dublin because they have reached 18 and their services have stopped. That is a genuine fear.


One area in which parental consent is often required is that of personal relationships, particularly when it relates to people with severe intellectual disability that are under 24-hour care. The dilemma for staff is whether or not to allow the relationship to develop and if the people have the capacity to make their own decisions in this important area of their lives. They felt that the decision is usually made in line with the wishes of parents and service guidelines rather than the wishes of the people most directly concerned.

It is on our terms that they have these relationships. The people with disabilities don't have a problem with it but us as carers have problems as to what way a relationship should develop. Personally I would be a bit uncomfortable. There are guidelines but no-one wants to be the first to consent to two people going to bed together or going off for a weekend together. I wouldn't like to be the one to make that decision. That is a difficulty for people with disability. We would look to a parent to make the decision but we all feel that everyone has a right to what I have a right to. That is fine for me because I would make the decision about my own life. But if there is someone in my care who says they have invited someone back to my community house and they are going to stay overnight, and they are fine about that but I might not be fine about it because they might be consequences. How do I know one person is not taking advantage of the other?


6.3 The challenge of working with people with disabilities

Most of the participants identified at least one challenge or frustration they faced in working with people with disabilities, including the following:

  • Cuts in funding are perceived to have adversely impacted on a wide range of areas, including transport, and the provision of basic supplies, such as wipes and pads. Some participants said that many of these cuts are avoidable if the HSE spent money more efficiently and smarter. In the case of transport, for example, some participants felt that significant amounts of money were being spent on taxis when a cheaper bus service was available.
  • The amount of money spent by HSE on taxis is significantly higher than total cost of running the rural transport programme. You could have a taxi running from Killarney to Cork with 4 passengers, and the taxi is paid separately for each of those four because it is paid by PRSI numbers. We could all work better together. We have IWA, HSE, Enable Ireland, and Rural Transport but it is very difficult to get everyone to sit down and work together. If we worked together the service could be provided more efficiently and better. Our buses and the IWA bus could be going in the same direction but no communication between us. There is some crossover but not enough.
  • Some participants said that they believed that a substantial number of people were 'misplaced' in psychiatric hospitals who are not receiving the specialist care they need from staff who support people with intellectual disabilities.
  • They felt that changing mindsets and traditional ways of doing things is always challenging. Money tends to get caught up in the system, which in many cases is the group home. It can be very challenging to find creative ways to release funds from an existing system to develop another system, which meets the needs of service users.
  • The fear of being held accountability has led staff to be very cautious about giving people any autonomy. Protocols on how staff should act in particular circumstances increasingly mean that staff will do what is best for the service and not necessarily what is best for the person: 'Who is ultimately responsible if the person thinks they are ok and something happens during the night?
  • Some staff believe that management are increasingly out of touch with the ordinary worker in the HSE, resulting in a general waste of resources and a lack of accountability.
  • The way parents are told that their child has an intellectual disability does not give them any hope. One person felt that too many paediatricians are advising parents to put their children into an institution and to get on with their lives.
  • Staff have to learn how to respect the privacy of service users who are living independently. It can be very challenging for staff to knock on doors before entering or not checking up on service users: 'it can take time to get used to the idea that I need to be granted access to their home'.

6.4 Service Provision

Overall, staff believe that services have improved significantly. One participant referred to the decline in over-crowding which had been a normal feature of services in the past. However, a number of participants felt that there were still many problems with some aspects of the care system, such as difficulties with transition periods.

A lot of money is going into early intervention and school age services but little after that?. There are huge problems in the transition periods. It can be terrifying for parents when you see them trying to get a child from a buggy into a wheelchair - parents don't have the information they need. Once you are finished with your early intervention team, you are locked out for years and back onto waiting lists and you will not be seen for 17 years. The most terrifying transition is the transition into 18 and there is nothing. We only see children until they are finished school. A definite improvement is needed for child and parents.

Some participants believe that there are substantial numbers of people who are 'without any service', possibly because their parents chose not to use any services and coped alone when they were younger. This is resulting in elderly parents being cared for by an adult with a disability, who themselves need to be cared for.

Service provision was not perceived to be equitable throughout the country. Some areas and some of the longer established services tend to get more resources than others, resulting in some inequality in the distribution of services across the country. Services can also vary by catchment area.

Services vary by catchment area. I know 2 or 3 parents who have moved into our catchment area to get the service. Others who have lived in the area all their lives but the catchment area moved and they can't avail of services anymore and that is no fault of the parents. That is a very common thing. It could be due to moving from Health Boards to the HSE, from local administration to national administration, so you can have people in Dublin making decisions for people in Donegal when they don't know the local situation. They are talking of moving back to the older system. Some people can't avail of newer developments even if they are closer to their homes because they are attached to an older development.


Transport was singled out for particular mention because of its perceived importance to people with disabilities. A representative of the rural transport scheme said that in addition to facilitating movement between two places, the rural transport scheme has a strong social element. If someone doesn't travel on their usual day, people will check if anything is wrong. However, while some participants commended public transport systems for being accessible, others highlighted difficulties experienced by people with disabilities.

I use the Cork-Dublin train and they have to be commended for their wheelchair accessible trains and staff helping. A friend who is a wheelchair user and she is full of praise for them. All trains have areas for clipping wheelchairs in.
Some Bus Éireann buses are wheelchair accessible but not everyone aware they have lifts. The way it works is that you ring Bus Éireann the day before, tell them what service you want to use, the time of the bus, so that they can send an engineer out to put the lift in and take the seats off. It is not an accessible service. A lot of ticking boxes is going on. Bus Éireann claim to have x accessible vehicles. Do they have any accessible bus stops? Some bus stops in rural Ireland are in the middle of 100 mph speed zones. I wouldn't think of going down there myself, let alone if I was in a wheelchair. Realistically it doesn't make sense to have accessible buses but non-accessible bus stops. The same for people who are partially sighted. They can stand at a bus stop with a guide dog but chances are the bus will fly past them. Also, some buses are dangerous for wheelchairs.


6.5 Independent Living

Independent living was not perceived by this group to be a static phenomenon and it changes according to a person's life-cycle stage, disability and other circumstances. Accordingly, the best type of housing for a person with a disability depends on 'what is happening in their lives at any one moment in time'. For some, it could be a two-storey building, while for someone else it is an apartment, and another it is a wheelchair accessible building. In your 20s, it can mean sharing with friends, while in your 30s, it may entail living with a partner.

When asked what factors would promote greater independence for people with disabilities in living lives they want to lead, participants made the following suggestions:

  • Choice: 'Everything I would like for myself'
  • Transport that is accessible, inexpensive and which goes places people want to go
  • A home where they have a real choice who comes in or out
  • Opportunities to be with their friends
  • Employment opportunities, which would enable a person make money and feel respected
  • Opportunities for people with disabilities to integrate with others who are able-bodied
  • A Personal Assistant that is focused on the needs of the person rather than bureaucratic rules
  • Control over funding that would give them autonomy on how it was spent and how resources are used for their benefit: 'To spend money in anyway they wished, to get out or stay at home, and to decide who is their carer'.
  • More planning for long-term needs
  • Early intervention services
  • Information related to their disabilities e.g., what grants they are entitled to receive. This information should be consistent across the country and take account of people's literacy and other special needs
  • Having friends to socialise with and/or a mentor or 'big brother/sister' who can act as a friend. Access to buildings and entertainment venues
  • Acknowledgement that people with disabilities can contribute to society and that society will see this and acknowledge their role in society
  • Achieving a balance between duty of care and allowing people to make mistakes and have negative experiences. Allow more creativity and flexibility in the interpretation of regulations
  • A less professional service, which utilises carers from the community who don't have professional qualifications but who can befriend and support someone with a disability. It is important, however, to ensure they have Garda clearance and that there is adequate professional support for the person
  • A change in public attitudes to people with disabilities
  • Easy access to equipment, such as wheelchairs, that is necessary for mobility and getting people out of their homes
  • An end to 'geographical apartheid' and equality of service provision throughout the country
  • Less holes in footpaths


Furthermore, when participants were given an opportunity to suggest one area they felt would improve the independence of people with disabilities, they made the following suggestions:

  • Resolving the mentality capacity issue and recognising that a person can be supported to make appropriate decisions for them and not be held back by families, services etc.
  • It is very important that you have the right people present when planning for a person, not just those with negative views, people who are there to do a job for the person.
  • Everybody living in a home where they feel they are meant to be
  • Supports to counter loneliness of people placed into the community
  • More community supports to make communities more supportive, clued in, interested, engaged, to live alongside people with disabilities e.g., starting at schools level with 'best buddies' programmes to permeate through society
  • Integrated education system with no segregated institutions where person with disability is just a classmate with a disability.
  • Schools with proper access and facilities
  • Equal rights and access to education, housing etc by law. We are not a benign society and we need these by rights
  • People who shout loudest should not get most of the resources and attention
  • Fairness in funding, access to services, etc.

6.6 Concluding Comment

This group of frontline staff emphasised the rights of people with disabilities, with many of them highlighting instances where they believed the rights of people with disabilities were being abused. In some cases, this abuse was due to the persistence of historical and cultural practices, while in other cases, it was due to the reluctance of staff to take risks without the support of families or a higher authority. A number of staff acknowledged the improvements that had taken place over the years, initiated partly by the services, the HSE and more recently, through the work of independent advocates. However, barriers to further improvements are thought to exist, including the reluctance of parents to allow their children become more independent in case they end up returning home to be minded by them when they are too old.

The staff identified a number of challenges in working with people with disabilities including the impact of budgetary cuts on services, the misplacement of people with intellectual disabilities in psychiatric hospitals where they do not receive the necessary specialist care, difficulties in challenging mindsets and traditional ways of doing things, the fear many staff have of being held accountability resulting in some staff doing what is best for the system rather than the patient, and a lack of understanding shown by some staff of what independent living means for people with disabilities. This group also highlighted a problem mentioned by the parents of children with disabilities concerning the perceived inequitable distribution of services throughout the country.

The participants in these groups also identified a number of factors they felt would promote greater independence for people with disabilities including, choice, adequate transport, accommodation that is a real home, more opportunities for people to socialise and be with their friends, employment opportunities, personal assistants, greater control by people with disabilities over their funding and resources, more long-term planning, early intervention services, information relating to their disabilities, access to equipment, better footpaths and facilities, and a change in public attitudes to people with disabilities. However, most fundamental of all, is that people with disabilities would be treated with respect, dignity, and in accordance with their rights.

Chapter Seven - The views and experiences of advocates

Advocacy is concerned with getting one's needs, wants opinions and hopes taken seriously and acted upon. The Commission believes that advocacy is essential because it allows people to participate more fully in society by expressing their own viewpoints, by participating in management and decision making and by availing of the rights to which they are entitled (Report of the Commission on the Status of People with Disabilities, 1996, p. 106).

7.1 Introduction

Historically, people with disabilities in Ireland have experienced 'a widespread exclusion' from advocacy mechanisms to represent their interests and facilitate decision making processes, particularly for those 'living within residential care and total institutions'(Birmingham, 2001, p. 4). However, this situation is perceived to have changed for the better following the publication of various policy reports, the enactment of salient legislation[2], and the establishment of the National Disability Authority. Whilst acknowledging the many and diverse forms of advocacy and advocacy services that are possible (Weafer, 2003), the present chapter presents the views of nine advocates employed in the community and voluntary sector for people with disabilities.

A number of themes emerged during the discussion, as follows:

  • The distinctive needs and abilities of people with disabilities
  • The rights of people with disabilities
  • The right of every person with a disability to live independently
  • The importance of independent advocacy
  • Barriers to people with disabilities living lives they would like in their respective communities.

7.2 The distinctive needs and abilities of people with disabilities

The advocates generally felt that people with disabilities were unique with diverse needs and abilities. Accordingly, independence means different things for different people.

Independence has first to be defined. Some might see independence as a person living on their own totally but a person can also be independent with supports that enable them to be independent. For someone with a physical disability, that might mean having a Personal Assistant 24/7. For someone with an intellectual disability, it may mean having someone available they can contact when they need, depending on the needs of the person. Independence means providing whatever supports a person with a disability needs to balance things up compared to the needs of a person without a disability living independently, to make it equal.


Depending on the distinctive needs and abilities of a person, supports and services need to be designed around the person.


7.3 The rights of people with disabilities

Unsurprisingly, perhaps, the advocates stressed the importance of people with disabilities having basic rights and choices. Unfortunately, they believe that this is not always the case. A number of advocates gave examples where people with disabilities were prevented from doing something by the actions of parents or staff. One mother, for example, 'colluded' with a GP to prevent her young adult son from passing the eye examination for the driving test because she feared for her son's safety. The advocate was annoyed that the rights of the young adult man were being interfered with without his knowledge

Parents can stop their 'children' from doing something e.g., 21 year old person with Down Syndrome continually failing the eye test for driving test because mother told doctor to fail him because she felt he wasn't capable of driving. Yet he would have to pass the same test as everyone else and better than able-bodied on drugs. Not only was mother going to GP but the GP was doing what the mother asked. He didn't know and genuinely thought every time that he was going to get it next time - he had hope - but his mother told the advocate not to interfere.


Another advocate spoke of a situation where a woman was expected to sign a contract for Personal Assistant hours, which effectively 'signed away' her right to be rescued in the event of a fire. Apart from finding it 'mind-numbing' what people are expected to do just because they are getting Personal Assistant hours, the advocate was exasperated that the person had not been advised to get legal advice before signing the contract.

Staff, which put the needs of the service ahead of the service user, were also thought to obstruct the rights of people with disabilities, even in situations where the staff are acting in ways they believe are in the best interests of their clients. This is a situation that could be resolved if staff were 'more facilitators rather than decision-makers'.

The service-users were asking for certain things e.g., bullying, but the service decided they were going to do something else and that was it. What the service users wanted didn't matter. It was what the staff had decided that would happen. That is where it lacks. A lot of staff don't know what rights of service users are.
The staff that work with people with Intellectual Disability take on a parent role rather than a staff role and they act as a parent would act to a child. They need to remember that they are members of staff with a duty to the person and their rights. The parent in them means they want to protect the person but often by doing so, they are denying them their rights. That is why the staff need to understand the difference and that they don't get paid to be a parent. They get paid to be a staff member with duties and respect for service user. Duties of care means respecting their rights.


Some advocates felt that inadequate resources within a service and organisation culture can sometimes block service-users' rights, where the resources or traditions of a service dictate what happens.

It is about organisational culture, where the focus is on the service provider. There are certainly instances where staff working hours dictates what the service user gets and not what the service user needs, which is completely hideous.


They felt that the problem is that no-one questions established practices, such as the policy in some residential homes for residents to be home before 10pm at night in order to get their medication even though they are more than capable of taking their medicine themselves. While this may be due to staff timetables, it is also the case that 'duty of care' considerations can make staff fearful that they will be held responsible if the person forgets to take his/her medicine.

Social workers have a strict duty to care and often this duty of care can restrict the rights and options of the person with disabilities - a huge battle for independent advocates e.g. person making a will told by day staff he should tell social worker but he has a right to make a will - he doesn't realise this and is under duty to her and not thinking independently for himself. The whole duty of care that has built is a real barrier to independent thinking. It creates a dependency and the professionals say, how can they move into independent living? They are not able to. The don't see the potential of people sometimes because of this duty of care because they are worried about their own jobs and what it means for their responsibilities.


7.4 The right of every person with a disability to live independently

The advocates believe that everyone can live independently if the 'right supports' are in place and that everyone with a disability has a right to live independently. Independence will mean different things for different people, depending on their abilities, needs and circumstances. For some people, this will mean 24-hour care, while for others, fewer supports will be required. One advocate, who herself has a physical disability, felt that she could live independently but not alone, as she needs assistance with transport, carrying objects, shopping, and other activities that are not possible because of her disability. For her, independence is essentially a quality of how a person perceives their situation and she believes that if people need extra supports to live independently, then this is the way it should be. However, she also noted that the reality could be different from this ideal.

Independence is what the person sees it as. I was told by a manager that people don't always get what they want. They get what they need - that is the mentality. Who decides what they need? He does and the HSE, and his budget decided what he could give them.


The advocates identified a number of barriers to independent living, as follows:

  • The persistence of an institutional mentality by staff and service providers, which does not give sufficient time or space for people to develop sufficient skills and to make their own choices, even if sometimes these choices are wrong. It is also perceived to be a 'power thing where staff decide where things go and what happens'. People are not supported and are effectively 'set up for failure'. Very often, the systems that are perceived to have failed people continue to keep people in a 'dependency state' by not training them to learn basic skills that would help them live independently. Most advocates felt it is unfair and unrealistic that people who have spent years in a residential setting should be expected to live independently without adequate transition. In effect, people are being set up to fail.
Allowing people to develop the skills using a developmental model to live a more independent life. Taking people at their own pace and not giving them 3 months to succeed. It is about people making choices and when people are institutionally minded, they have no concept of that, it is their choice. You might never live alone but you make your own decisions, the right of self-determination. Isn't it taking away the failing part of it as well. If a person needs the extra help, it is just that they need the extra help and getting rid of the notion that it is a failure if you can' do it alone. If you don't get an opportunity to try it, how can anyone of us learn?
The confidence of someone put into a house on their own, without skills or someone there to help, would be destroyed. It is a power thing where staff decide where things go and what happens, not asking the service user, setting people up to fail, sabotaging good work. That is the reality we are working in - we have to come from another angle. Why should people change their attitudes - what is in it for them? It is about secrets. Most people have been brought up with secrets and even now when people are being moved out of a house they will tell one person and not another in case she gets upset.
This thing of independent living, having been in a residential setting for a number of years, people are expected to live in a house on your own in an estate, no other option considered, and no transition at all, no half-way, no support. I am working with a man in his 50s in a nursing home and he has never made a cup of tea since he went in there and then they expect him to move into a council house! And of course he is going to fail. Their duty of care has much more entitlement than he has. How can he ever show that he can live independently. There is no half-way opportunity, there is no respite where he can go and check things out and see if he needs more support. He thinks he can do it but their duty of care says he has not a notion of doing it. Where is the middle ground to support him, empower him, encourage him? It is just not there. You are destined to fail. He was never destined to stay in the nursing home. The staff tell him that they got him a house 4 years ago and although he didn't see it, he will be told that he wouldn't take it. We worked so hard - made to feel grateful for them doing their job, doing what they are supposed to do. Totally power of the staff and the vulnerability of the people. They have the right to say that I would like to see the house and to make my own decisions where I live. No one has told them they have that right and they don't feel they have that right.
  • Inadequate Personal Assistant hours, which are decided by resources rather than the needs of the person.
Personal Assistant services are critical but hours have been reduced and are almost back to the medical model. Disability equates with medical stuff and quality of life is gone e.g., Personal Assistant to help buy medicine, attend doctor etc. Who decides need of Personal Assistant, special needs assistant in school? How can it be that people who needed Personal Assistant assistance in the past no longer need the same level of assistance now that recession has happened? The Disability Act is resource led.
  • Continuously training for work when the likelihood is that they will never find employment.
People with disabilities are trained and trained but there is no work at the end of the process - how disempowering is that? People get so excited - they are asked, they go on a two year course, they get an extension, they go on rehabilitation training, national learning network course, they move on to another course, and another until they run out of courses. Sometimes it works out but not often. It is so disempowering. What do people do? Train themselves until they are 55? People have a tendency to go so far and then hit day centres which are effectively waiting rooms, where they wait and knit and look at telly and then go to a nursing home. It is so disempowering. We went to College and we expected to get a job.
  • A perceived lack of coordination of services for people with disabilities
There is no coordination of services. Everyone is fighting their own little patch to look for additional money or to use up money that has to be spent. Why does a person with disability need so many people involved in his/her life? At policy level, it is really wrong that our government works in such an ad hoc way from department to department.
  • Lack of flexibility by employers e.g., where people are not penalised unduly for being late for work or where people are prevented from doing a FÁS course because of the minimum requirement to do 19 hours a week
  • Transport can be an issue for people who don't receive a mobility allowance. This is perceived to be less of a problem for people with physical disabilities
  • The disempowering culture and policies of the HSE at local level. One example mentioned by an advocate concerned a Personal Assistant to a woman who is paralysed from the neck down who is not allowed to lift up her children because it is not in her remit. Another Personal Assistant insists she is present when a woman wishes to use a commode even though she is not required. These and other instances illustrate how 'their duty of care has much more entitlement than the rights of a service user
  • The absence of adequate transition between residential care and independent living
  • The unequal geographical distribution of services.


When asked what they thought would promote greater independence for people with disabilities, the advocates identified a number of enablers:

  • Money
  • More consultation - being listened to and being heard when they speak
  • Increase in Personal Assistant hours
  • Choice - one size does not fit all
  • Accessible information and meaningful interaction with mainstream agencies e.g., given information from County Councils etc in accessible format, that they know what choices they have out there,; and that the agencies would change the way they deal with people with disabilities - customer service departments
  • Advocacy that is independent. One example related to an advocate helping an18 year old man to get housing when he was not due to become a priority on the housing list until 30. He had Intellectual Disability and 'was at the mercy of his mother who has lived a transient lifestyle'. The advocate felt it was important 'he knows his options and to have people like us to help him'.
  • People with disabilities should know they have a right to live in the community.


7.5 The importance of independent advocacy

Independent advocacy is regarded as hugely important for people with disabilities, particularly those in long-term residential care. Advocates can make a difference by helping people make relatively small but nonetheless important changes, and thereby encouraging others to do something similar.

Self-advocates are learning from each other e.g., making wills. They are inspiring and learning from each other. The more we empower people, the more people successfully move out to independent living and get supports to do it. When others see it, they say 'Yeah, I want some of that'.


Thus, for the most part, they felt that they are making a difference 'on an individual basis' rather than at a cultural or systemic basis, which is where many of the problems originate.

That is all you can do. It is definitely a cultural thing. The culture within a County Council is such that all we can do is try to change individuals and highlight the individual circumstances that are going on. I cannot change the mindset of X County Council. It is not possible. Our role is to highlight the culture that allows people to be listened to or not listened to, the way information is addressed or not, addressing the power balance is very important. That can lead to change but there are so many barriers - duty of care and the reluctance of organisations to support people live independent lives.


A number of advocates gave examples of situations where they believed they had made a real difference to a person's life, including a girl who began asking her social worker questions and not the other way around as was previously the case. Another advocate referred to a young man who was perceived by the service to be 'an impossible case'. With the assistance of the advocate, he succeeded in getting accommodation and employment with little or no support from the service. The problem was that the manager thought the man was a risk because 'she had a big fat file on him' that told her he had been in trouble 30 years ago and she was unwilling to change her mind about him. The man told the advocate that it felt 'amazing to be one of ye', a normal person with a house and a job.

The advocates are not always readily accepted by service providers, with some service providers 'using them' to bring about change with difficult clients. They also noted difficulties that can arise between their role as advocates and the interests of service providers and that they are 'constantly reminding the service' that both they and the service provider are acting in the best interests of the persons and that they 'are not fighting each other'.

7.6 Barriers to people with disabilities living lives they would like in their respective communities

When asked what barriers exist that prevent people with disabilities participating more in their communities and with their peers, the advocates identified a number of factors:

  • Inadequate access to information e.g., sometimes people are unaware of activities, possibly due to information being presented in ways that are not accessible to some people with disabilities
  • Transport - free travel may work well for some people but not people who live in remote rural areas 'where there might be only two buses passing your home in a day and they may not be going anywhere you want to go'. Instead of a travel pass, which often requires the assistance of a Personal Assistant, some advocates recommended the provision of a voucher system for the use of taxis 'which would allow them to travel when they wanted in their own terms'. Some advocates felt there is 'an awful waste of transport facilities' in Ireland with a lot of buses parked up during the day and 'only on the road for 17 hours when the drivers are employed for 35 hours, and people at home not able to go anywhere'
  • The heavy reliance of people in residential settings on the availability of staff - if there is not enough staff, they don't get out. Furthermore, even if staff bring residents out, for example, to a coffee shop, some advocates felt this is 'just the same as sitting in the canteen'. They are not socialising. It is in effect, 'a trip to the coffee shop during working hours'
  • Access to local facilities can be impossible due to physical access issues and 'an organisational culture' which bars people with disabilities from using some recreational facilities
  • discrimination against people with specific disabilities. Some young men with Acquired Brain Injury (ABI), in particular, will avoid recreational facilities in order to avoid being labelled


7.7 Concluding Comments

The advocates stressed the individuality of each person with a disability and most felt that independent living should mean different things for different people, depending on their age and personal circumstances. A number of advocates gave examples of situations where they felt the rights of individuals with disabilities had been violated by family members and staff. However, they also cited instanceswhere individuals had been assisted byadvocates. One problem is that few if any people ever question established practices or policies.

The advocates identified a number of barriers to independent living including, the persistence of an institutional mentality by staff and service providers, inadequate Personal Assistant hours, the lack of employment at the end of training encouraging false expectations, a perceived lack of coordination of services for people with disabilities, a lack of flexibility shown by some employers, transport problems, the disempowering culture of HSE policies and practices at local level, and inadequate support at transition between residential care and independent living.

In addition to factors such as money, consultation, more Personal Assistant hours, and the provision of accessible information, they felt that independent advocacy was very important in enabling independent living for people with disabilities. For the most part, they felt they are making a difference on an individual rather than a systemic basis.

Chapter Eight - Concluding comments and recommendations

8.1 Introduction

The main aim of this consultation was to elicit the views of various stakeholders on independent living, community participation, and quality of life options for people with disabilities in Ireland. The study was designed to 'give a voice' to people with disabilities and those closely associated with their lives. To this end, it may be argued that the study has succeeded in achieving its primary purpose. The substantial amount of information from the different stakeholders, which is presented in his report, should provide the NDA and others with ample evidence to inform their policies and practices. The views expressed in the preceding chapters are from the stakeholders themselves, with little or no commentary or interpretation from the author.

Independent living is a multidimensional and dynamic construct, which describes both an objective reality and a subjective view of this reality. It incorporates the life conditions and circumstances, which make up a person's life, and the perceptions of those conditions by the person who is living independently. Accordingly, to improve the quality of life for people with disabilities, it is necessary to improve both the objective living conditions of people and their perceptions of these conditions. The findings from the present study confirm that independent living can mean different things to different people, depending on their disability and circumstances. Independent living is, for example, very different for someone with a moderate and a profound disability. It can also vary by a person's age and social background. Yet, the underlying principle of independent living is relatively constant. It involves personal choice, alternatives, rights, and control. It is about knowing what you want and having sufficient support and resources to ensure it happens. It is about living a normal life, within the constraints of a person's disability.

The study identified a number of obstacles to independent living, together with some suggestions, which the participants feel would enhance independent living for people with disabilities. Some of these are geared to societal and structural levels, while others are more individual and personal. The former will constitute the basis of the recommendations listed in the following section.

Some of the main obstacles to independent living detailed in the report include: poor co-ordination of disability services, together with low levels of long-term planning; institutionalised mindsets and practices in services, which sustain ingrained ways of doing things and inhibit more creative initiatives; deficient transport options; issues with access and use of buildings and facilities; insufficient and declining resources, which reduce Personal Assistant hours and impact on services generally; difficult access to information in an appropriate format; inadequate transition support; a lack of adult services; low levels of independent advocacy; low expectations of people with disabilities; public attitudes and thoughtlessness; insufficient regard for the rights of people with disabilities; a lack of personal confidence; poor practical skills; lack of support and encouragement from families and staff, and the nature of a person's disability.

8.2 Recommendations

These difficulties and issues suggest a number of recommendations, which are

  1. Practical ways of promoting greater co-ordination of services for people with disabilities should be explored, so that all services relevant to the needs of an individual will be fully aware and involved.
  2. Early and regular assessments should be carried out on people with disabilities to monitor and respond to changes in their circumstances.
  3. People who need to access services for the first time as adults should be facilitated.
  4. Additional resources should be considered for adult services.
  5. Individuals who wish to have greater control over their lives should have the option of direct access to funding.
  6. Current transport options should be evaluated to maximise their efficiency and value for money.
  7. Institutional mindsets in services should be challenged and opportunities for enhanced creativity explored by investigating best practice in Ireland and internationally.
  8. Individuals with disabilities should be supported to consider independent living if they so wish and appropriate supports put in place and sustained.
  9. Disability awareness programmes should be considered for schools and the general public which would challenge public thoughtlessness in relation to disability.

References

  • Birmingham, D. 2001. Advocacy. A Rights Issue. A Reflection Document. Dublin: The Forum of People with Disabilities.
  • Chalmers I. 2005. If evidence-informed policy works in practice, does it matter if it doesn't work in theory? Evidence & Policy, 1, 227-42.
  • Domegan, C. & Fleming, D. 2003. Marketing Research in Ireland. Theory and Practice., Dublin, Gill and Macmillan.
  • Felce, D. 1997. Defining and applying the concept of quality of life. Journal of Intellectual Disability Research, 41, 126-135.
  • Finch, H. & Lewis, J. 2003. Focus Groups. In: RITCHIE, J. & LEWIS, J. (eds.) Qualitative Research Practice: A Guide for Social Science Students and Researcher. London: Sage.
  • Hammersley, M. 2003. Social Research Today. Some Dilemmas and Distinctions. Qualitative Social Work, 2, 25-44.
  • Mason, J. 2002. Qualitative Researching, London, Sage Publications.
  • Mayock, P. 2009. Understanding Social Problems through Qualitative Research. Dublin: Children's Research Centre, Trinity College, Dublin.
  • National Disability Authority 2004. Ask Me. Guidelines for Effective Consultation with People with Disabilities. Dublin: National Disability Authority.
  • Neuman, W. L. 2003. Social Research Methods. Qualitative and Quantitative Approaches, Boston, Allyn and Bacon.
  • Report of the Commission on the Status of people with Disabilities 1996. A Strategy for Equality. Dublin.
  • Sarantakos, S. 2005. Social Research, Basingstoke, Palgrave Macmillan.
  • Solesbury, W. 2001. Evidence Based Policy: Whence it Came and Where it's Going. London: ESRC Centre for Evidence Based Policy and Practice.
  • Weafer J. A. 2003. The Jigsaw of Advocacy. Dublin: Comhairle/ The Citizen Information Board.
  • Wengraf, T. 2001. Qualitative Research Interviewing. Biographic Narrative and Semi-Structured Methods., London, Sage Publications.

Appendix A: Information on the NDA's Public Consultation with Stakeholders

The National Disability Authority (NDA)

The NDA is the national independent statutory body established to advise the Minister for Justice, Equality and Law Reform on policy and practice relating to people with disabilities. NDA's statutory mandate on policy advice, research, standards and universal design addresses the inclusion of people with disabilities in the economic, social and cultural life of the community.

The NDA have commissioned an independent research agency, Weafer Research Associates, to undertake this consultation on their behalf. All of the information will be treated in the strictest confidence and individual details or comments will never be disclosed to anyone.

The Consultation Process

The purpose of NDA's consultation is to hear and document the views of different people, men and women of different age groups and from different parts of the country. This will take place by means of small discussion groups, called Focus Groups, where up to eight people similar to yourself will be invited to give your views. Groups will be made up of people with disabilities; others with family members; advocates; and people who work with and care for people with disabilities (see enclosed letter for details of the Focus Group you have been invited to attend).

The Focus Group will have two parts to it, lasting no longer than 2 hours with a short break.
Part 1 - NDA wants to hear your views that will help inform NDA policy on key issues like Independent Living; what helps or hinders people in participating in the every day life of the community.
Part 2 - the Department of Health and Children are doing a policy and value for money review of disability services and have a few ideas about different ways of providing services. They would like to hear your views on these ideas -

  • of having more say in what supports you get and who provides these supports
  • of being able to choose your own doctor (GP) and being supported to do that
  • of being able to use the same transport and housing as everyone else does and being supported to do that

Consent Form

A consent form is enclosed and we would like you read it and if you are happy to participate in the group, sign it and bring it with you to the focus group.

The Outcome of the Consultation

Two reports will be prepared by the project leader.
Copies of the reports will be placed on the NDA website www.nda.ie, probably in July 2010.
You will not be contacted by the NDA or the project leader following the group but if you have concerns or questions, please make contact at one of the following numbers.

Contacts

If you have any additional questions, please contact
Project Leader: John A. Weafer
Mobile 087-686 2985
Email jaweafer@indigo.ie
NDA: Donie O'Shea
Tel (01) 608 0400
Email dposhea@nda.ie

Leaflet

This leaflet tells you about the things you need to know about the National Disability Authority's consultation meetings

What is the National Disability Authority(NDA)?

  • The NDA was set up in 2000
  • The NDA works with the government and public bodies
  • We also work with others
  • We try to make sure that life improves for people with disabilities


This is the work NDA does
Research = finding out more
Policy = having a plan
Standards = making services better
Universal Design = telling people how to design places and things that everyone can use

Who are we asking?

The NDA has invited different people to different meetings

  • People like yourself will be going to the meeting you will be at
  • Other people, like parents or people who care or work for people with disabilities will go to other meetings


How Will NDA Find Out What I Think?

  • Each meeting will have about 7 other people like yourself at it
  • The NDA has asked and are paying a person to run these meetings. That person's name is John Weafer
  • John will ask everyone a few questions
  • John will use a tape recorder, but don't worry, no will know who said what
  • Each meeting will last about an hour and a halfWhat Kind of Questions Will I Be Asked By the NDA?


The NDA wants to hear your views on important things like

Where do you want to live?
Who would you like to live with?
What are the things you would like to do everyday with others?
What would help you go to places like the shops and the cinema?

What kind of Questions will I be asked by the Department of Health and Children?

The NDA is also helping the Department of Health and Children.
They have a few ideas about different ways of giving you services you may need.
They would like to know what you think about their ideas like

  • Having a say on what help you need and who gives that help
  • Choosing your own doctor
  • Being able to use the same transport everyone else does
  • Living in a house like everyone else does
  • Getting the help you need to do these things


Remember you will not be asked to talk about anything that you think is too personal

How Will The Things I Say Be Kept Private?

  • All the answers you give to the questions will be kept private
  • Anything you say or any information about you will not have your name on it
  • All the information will be stored privately at the NDA and destroyed after three years

Remember - anything you say will not affect the service you or your family gets


Do I Have To Take Part?

If you are one of the people asked to take part it is up to you to decide if you want to be involved.

  • You need to sign a form saying that you agree to be involved. This is called a consent form.

Make sure you read it first.

  • You can decide to stop taking part at any time without giving a reason.

Remember if you decide to take part in the meeting or choose not to take part, your service will not be affected.


What If I Need Help To Take Part?

  • You need to tell us the best way for you to have your say.
  • If you need help or support at the meetings you can bring someone you trust with you.
  • This could be someone from your service, a family member or a support worker.
  • Or if you are deaf and want a signer let us know and we can get someone.


What Will Happen When It is Over?

  • The information you give is very important to the NDA and will help us let the government know about what is important for you
  • When all the information is collected two reports will be written
  • One report will be about what NDA learned from the consultation about independent living and being part of the community
  • The reports will be put on the NDA website www.nda.ie


Where Can I Find Out More?

If you want to find out more about NDA's consultation meetings you can

  • Talk to the person who has asked you to take part

or

  • Phone the Project Leader John Weafer (01) 601 4092

or

  • Contact Donie O'Shea at the NDA (01) 608 0400

25 Clyde Road
Ballsbridge
Dublin 4
Phone/Minicom: (01) 608 0400
Email: info@nda.ie
Website : www.nda.ie

Appendix B: Topic Guide

Key topics to explore - what would help, what would hinder

Independence

Social / Community participation

  • big life decisions - live the life you want
  • mixing with people generally
  • where and with whom you live
  • doing what your peers do
  • choice in day to day activities
  • using local social facilities

Topic guide - draft to guide visuals, vignettes

People with disabilities

Advocates, families, frontline staff

IndependenceIndependence
The big life decisionsThe big life decisions

To live the life you want to live and feel happy with your life (e.g. role, career, relationships)

What would promote greater independence for people with disabilities in living the lives they want to lead

  • what would help you achieve that

What would restrict greater independence for people with disabilities in living the lives they want to lead

  • what would hold you back
 
Choice about where and with whom you liveChoosing where and with whom to live

Where would you like to live in 5 years time?

What do you see as the best housing arrangement for adults with disabilities

  • what would help you achieve that
  • what would help achieve that
  • what would hold you back
  • what would hinder achieving that

Who would you choose to live with?

What supports would help people with disabilities live more independently

  • what would help you achieve that
  • What would hinder that?
  • what would hold you back
 
Everyday lifeEveryday life

What would help you be more independent in your everyday life, and your daily activities and in choosing how you spend your day and where you go to,

What would help people with disabilities be more independent on a day to day basis - how they spend their day, daily and activities, where they go

  • what would hold you back
  • what would hold them back?
Social and community participationSocial and community participation
Mixing with people you want to be withMixing with people you want to be with

What would help you spend more of your day to day time with the people you would like to spend your time with?

What could help someone with a disability mix more in mainstream society?

  • What would help hold you back
  • what would hold them back?
Joining in like your peersJoining in like peers

Think of things and activities you'd like to do that other local people, at your age or stage in life, would do

What would help someone with a disability doing the things they would like to do that others in their area of their age or stage in life would do

  • what would help you do them
  • what would hold them back
  • what would stop you
 
Using local facilitiesUsing local facilities

What would help you use facilities and amenities in your neighbourhood or downtown that you might like to use (e.g. shops, pubs, cafés, cinema, gym, sports facilities, etc), and what would hold you back

What would help or hinder someone with a disability using facilities and amenities, in the neighbourhood or downtown (e.g. shops, pubs, cafés, cinema, gym, sports facilities, etc)

Likely Health Questions - views on

Likely Health Questions - views on

money follows the person/individualised budgets

money follows the person/individualised budgets

mainstream services for people with disabilities, e.g separation of housing and health supports; mainstream health services

mainstream services for people with disabilities, e.g separation of housing and health supports; mainstream health services

moving from a care framework to supports for inclusion in mainstream activities (work/leisure etc)

moving from a care framework to supports for inclusion in mainstream activities (work/leisure etc)




[1]
For the most part, these support workers in these and the other groups sat separately from the participants and did not intervene at any stage during the group. One exception was where a participant could not communicate without the assistance of a special alphabet board, which was administered through his carer.