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
- Parents of children and young adults with a disability
- Frontline staff
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.
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'.
These difficulties and issues suggest a number of recommendations, which are
- 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.
- Early and regular assessments should be carried out on people with disabilities to monitor and respond to changes in their circumstances.
- People who need to access services for the first time as adults should be facilitated.
- Additional resources should be considered for adult services.
- Individuals who wish to have greater control over their lives should have the option of direct access to funding.
- Current transport options should be evaluated to maximise their efficiency and value for money.
- Institutional mindsets in services should be challenged and opportunities for enhanced creativity explored by investigating best practice in Ireland and internationally.
- Individuals with disabilities should be supported to consider independent living if they so wish and appropriate supports put in place and sustained.
- Disability awareness programmes should be considered for schools and the general public which would challenge public thoughtlessness in relation to disability.