Individualised Supports and Mainstream Services Attitudes of people with disabilities and other stakeholders to policy proposals by the Department of Health and Children

By John A. Weafer
Weafer Research Associates (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 Individualised Supports and Mainstream Services Attitudes of people with disabilities and other stakeholders to policy proposals by the Department of Health and Children, 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. Introduction

This report presents findings of focus group consultation, conducted for the National Disability Authority (NDA), to elicit the views of people with disabilities and others closely involved in their lives, to emerging policy ideas coming from a policy review of disability being undertaken by the Department of Health and Children. The emerging policy ideas under consideration by the Department of Health and Children propose a movement away from segregated disability services towards the provision of individualised supports and mainstream services. The consultation was carried out by means of 15 focus groups with a broad range of stakeholders during March 2010, as part of a larger consultation exercise, for the National Disability Authority on how to achieve full independent lives with full inclusion in the community.

2. Individualised Supports

In the first instance the participants were asked to give their views on a policy idea relating to individualised supports. The following wording was shown and read out to participants:

Do you like the idea of having more say in what supports you get and who provides these supports? One idea is to have "the money follow the person". This means the person and their family will have a much bigger say in what supports are provided and who provides them. One example is that you can get your house or flat from a housing provider. Supports you get to live in this house or flat, like a personal assistant, may be provided by a service provider. This means you will have your own place to live but can use different supports and different providers depending on what you need. You can choose if you want a housemate or not, and you can choose who that person might be.

Many of the participants responded positively to the greater choice and control over funding, which they associated with an individual funding mechanism. However, some participants also queried the capacity and willingness of the government to effectively deliver on this policy, fearing that they would be the target of budgetary cuts or inadequate provision and follow-through by the Department of Health and Children. While some participants were nervous about any change, and the possible loss of services or resources, others were more hopeful and less questioning.

Service Users

Three groups of service users participated in the consultation - people with physical or sensory disabilities, people with intellectual disabilities, and self-advocates. People with a physical or sensory disability were generally in favour of the proposal. However, they were unsure how it would work in practice. One person was concerned that people with disabilities would be forced to accept the model that currently operates in the UK, whereby people would take on full employer responsibility for their Personal Assistant, while others were concerned with issues such as what would happen if their allocated money was spent too soon, how the funding would be allocated, and the risk of the government reducing the amount of money available

The self-advocates[1] liked the idea of having greater choice in their lives. They would all like to work in regular employment, the same as everyone else, in order to earn money, but more importantly it would enhance their sense of respect and show others that they are more than their disability. For this group of self-advocates, work means money, self-esteem, normality, and pride. They would also like to have more choice in their living arrangements, with most of them wanting to live outside their family home like other young adults. However, they also recognise that they would need support and that this would cost money. They know they are independent 'up to a point' and that none of them could, for instance, travel on public transport without assistance. Most of them are happy to go to their family doctor and had not considered any other option up to this point in their lives. The reality for this group of people is that they need support if they are to access services. At the moment, this support is provided through their services and families. However, they would like the opportunity to employ support under their terms, such as employing a Personal Assistant (PA) for a day-trip or holiday.

People with an intellectual disability shared similar views to those expressed by the self-advocates. The younger participants were generally living at home with their parents and for the most part, would welcome more freedom and independence. However, they would like to live close to their parents and in places which were familiar. A few individuals who are currently living, or seeking to live, more independent lives said that they would like access to direct funding if it enabled them to buy services, which they are currently not allowed to access. One young woman, for example, wanted to use facilities attached to a particular service but was unable to do so because she was not affiliated to the service.

Parents of children with disabilities

Parents with older children were most in favour of the proposal, with a number of parents stating that the greater choice they associated with individualised supports would be a good thing for their children. Conversely, the parents of younger children were much more sceptical of the proposal, believing that while it sounded good in theory, their experience with 'government promises' suggested the reality would be less than the promise. Some of the main concerns raised by parents included fears that:

  • Children with profound disabilities would lose specialised services and equipment
  • Services would cost parents more money
  • The scheme would not be sufficiently resourced
  • Parents would end up going to multiple locations in search of a fragmented service
  • It would result in a waste of money that would be 'gobbled up' in administration without any improvement in service provision
  • Existing inequalities in service access due to their geographical location would continue and possibly get worse
  • Essentially they would end up being 'sold a pig in a poke'

They also raised a number of practical questions relating to the proposal, including how the money would be allocated and how decisions will be made on an individual basis.

Frontline Staff

Frontline staff were generally in favour of the proposal if it was introduced with sufficient resources. Thus, while some liked the greater control it would give to people with disabilities, most staff questioned some aspect of the proposal, albeit without rejecting it outright. They would need further information and a reassurance from government that the proposal would be adequately supported before giving it their support. Overall, they thought that both individualised supports and mainstreaming, or parts thereof, should be brought in together.

Some of the main concerns raised by frontline staff included fears that:

  • Some people with intellectual disabilities would not be able to make an informed choice without the assistance of professionals in their service
  • The HSE or the Department of Health and Children may not have the capacity, resources or infrastructure to deliver or sustain the initiative
  • It would lead to difficulties for people accessing services for the first time as adults
  • Some people will inevitably get lost in the system without the assistance of independent advocates
  • No one will be accountable
  • Whoever shouts loudest will get most attention
  • People who really need a service may not be able to afford it
  • Confusion over how funds will be allocated and how a person's changing needs and finances will be assessed
  • What would happen if the person's budget is spent before the year ends
  • Possible abuses of the system if the person's rights and entitlements are not safe-guarded
  • Services may be affected by cutbacks during the recession

Advocates

Overall, the community and voluntary advocates were quite positive towards the proposal of individualised services. They generally felt that it would give the person with a disability greater choice and an opportunity to live a more independent life. However, they also expressed a number of concerns regarding the way the system would work in practice, including:

  • How will a person's needs and funding be assessed?
  • The need for independent support to assist people go through the assessment process
  • What happens if the family of an individual with a disability disagree with him/her on what is best for them?
  • It could be open to abuse from family members
  • Individuals with Acquired Brain Injury may use the system to play one service against the other
  • Safeguards need to be put in place
  • What happens if there are cutbacks?
  • The proposal will not suit everyone
  • No one would be held accountable

3. Mainstreaming

The second policy idea related to mainstreaming of services. The following wording was shown and read out to participants:

Do you like the idea of being able to choose your own GP and being supported to do that? Do you like the idea of being able to use the same transport and housing as everyone else and being supported to do that? One idea is that services will not be segregated or provided separately to people with disabilities. Supports will be available so that you can access the same mainstream services as everyone else. This means that when you want to go to a training course, you can be supported to go to the local college or to local classes to get that training. You can also be supported to do other things you want to do and to choose who to do them with.

The notion of mainstreaming is not a new concept for most people. Over the years, various initiatives have sought to support people with disabilities to access mainstream services, such as education. For the most part, these participants were in favour of mainstreaming, provided appropriate supports were provided, which would enable people with disabilities access services they needed. Conversely, they also raised a number of concerns and questions, including the perceived low level of services in rural areas, issues with transport, and the cuts in services due to the recession.

Service Users

People with a physical or sensory disability were divided in their opinions of the merits of mainstreaming. While most people were very much in favour of being supported to access mainstream services 'the same as everyone else', quite a number of participants were apprehensive of change. This latter group said that they were different because of their disability and that services needed to be different from mainstream also, particularly as many mainstream services are not perceived to be good enough for able-bodied people. Some people do not trust the government and fear a loss of services if this policy is implemented.

The self-advocates would welcome mainstreaming provided appropriate supports were in place to help them access services and facilities in their communities. While they recognise difficulties associated with living a more mainstream life, they would also like to move out of their comfort zone and live more independent and "normal lives" For them, choice is a good thing and, even if they make mistakes, they would like opportunities to make mistakes by themselves.

Most people with an intellectual disability currently access some mainstream services, such as going to the doctor or using local leisure facilities, with the assistance of family members and staff from services. They like the experience when they feel safe and the task is familiar to them. While some of them would like to live more independent lives, others would be nervous about any change. In theory, this group would welcome more opportunities for mainstreaming but, in practice, they know that most of them would need to be monitored and supported on an on-going basis.

Parents of Children with a Disability

In general, parents of children with a disability can see merit in the mainstreaming of services for people with disabilities. It is perceived to be an enabling process, which facilitates integration and access to community services. However, some parents also raised concerns regarding:

  • The relatively low level of services that exist for all citizens
  • The problem of transport in accessing services and getting around generally
  • The possibility that they will lose specialist support services when they are mainstreamed
  • The perceived gap between government promises and the reality of service delivery, such as the failure of current mainstreaming to deliver on what was promised for education and community support
  • The lack of monitoring that takes place in group homes
  • A lack of co-ordination between services for people with disabilities

Frontline Staff

The frontline staff had mixed feelings about mainstreaming. Ideologically, it is perceived by some staff to be 'spot on' but they also felt that policy does not always work out in practice. Some of the main concerns raised by this group included:

  • The inadequacies of the medical system for everyone, together with a need for greater capacity in medical services
  • The likelihood that people with disabilities would end up queuing for long periods of time just like everyone else
  • The belief that mainstreaming is not suitable for everyone, such as people with severe disabilities or behavioural problems
  • A concern that mainstreaming would result in more generalist and less specialist staff

Advocates

The community and voluntary advocates had similar views to frontline staff. They believe that mainstreaming is a good idea in principle but it is not always realised in practice. They can see benefits for the individual, provided appropriate supports are in place to facilitate more independent living. However, they raised some concerns regarding the current deficit in service provision, the time between reviews for people with disabilities, and the need for greater transparency and accountability.


Chapter One: Introduction

This report presents findings of focus group consultation, conducted for the National Disability Authority, to elicit the views of people with disabilities and others closely involved in their lives, to emerging policy ideas coming from a policy review of disability being undertaken by the Department of Health and Children. The emerging policy initiatives under consideration by the Department of Health and Children propose a movement away from segregated disability services towards the provision of individualised supports and mainstream services.

Consultation Methodology

The consultation was carried out by means of 15 focus groups[2] with a broad range of stakeholders during March 2010, as part of a larger consultation exercise, for the National Disability Authority (NDA) on how to achieve full independent lives with full inclusion in the community. The majority of time in the focus groups was dedicated to exploring the views of different stakeholders to independent living, community participation, and quality of life for people with disabilities in Ireland on behalf of the NDA. The balance of the sessions related to views on the Department of Health and Children's policy initiatives. Details of the focus groups are summarised in Table 1 overleaf.

Table 1. Structure of Focus Groups

 

Group

Age Range

Disability

Location

Date

Number of Participants

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


A primary concern of the consultation process was that it would be undertaken in a professional and ethical manner, in accordance with best practice guidelines endorsed by the NDA (National Disability Authority, 2004). The key elements of the consultation process are described 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 (Appendix B).

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. The groups with people with intellectual disabilities were spread over two one hour sessions.

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, in the event they would be required to support an individual who became upset. 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. While support persons did attend the groups, their assistance was not required or requested.

8. Recording

The groups were recorded with the permission of the participants.

9. Report

A detailed report was compiled and presented to the NDA


The focus groups were recorded with the written permission of all participants. This process facilitated the liberal use of verbatim comments in this report, thereby giving priority to the 'voice' of stakeholders in this report. Following a detailed discussion on independent living, community participation, and quality of life options for people with disabilities in the Republic of Ireland, the participants were asked to give their initial reactions and opinions of two vignette[3], which corresponded with policy proposals being considered by the Department of Health and Children.

Vignette 1: (Greater control through individualised funding).

Do you like the idea of having more say in what supports you get and who provides these supports? One idea is to have "the money follow the person". This means the person and their family will have a much bigger say in what supports are provided and who provides them. One example is that you can get your house or flat from a housing provider. Supports you get to live in this house or flat, like a personal assistant, may be provided by a service provider. This means you will have your own place to live but can use different supports and different providers depending on what you need. You can choose if you want a housemate or not, and you can choose who that person might be.

Vignette 2: (mainstreaming and individualised supports instead of segregated, group services).

Do you like the idea of being able to choose your own GP and being supported to do that? Do you like the idea of being able to use the same transport and housing as everyone else and being supported to do that? One idea is that services will not be segregated or provided separately to people with disabilities. Supports will be available so that you can access the same mainstream services as everyone else. This means that when you want to go to a training course, you can be supported to go to the local college or to local classes to get that training. You can also be supported to do other things you want to do and to choose who to do them with.

Alternative formats, designed by the NDA, were used to present the vignettes to persons with intellectual disabilities. The material comprised of four different scenarios, which related to accommodation, work, doctor, and transport to cover the focus of the vignettes (Appendix A).

Structure of the Report

Following this introductory chapter the views of the different stakeholders on individualised supports and mainstreaming will be outlined in chapters two and three, respectively. The chapters are divided into separate sections relating to the different stakeholders, as follows: service users - physical/sensory, self-advocates, and intellectual disability; parents of children with disabilities; frontline staff; and advocates employed in the community and voluntary sector for people with disabilities. Some concluding comments are briefly recorded in chapter four.

Chapter Two: Individualised Supports

2.1. Introduction

This chapter summarises the main findings from the consultation related to the first of the policy proposals, which sought to establish views on individual supports as a means of providing choice and control. The following vignette was presented to participants and they were asked to give their reactions to the policy idea.

Do you like the idea of having more say in what supports you get and who provides these supports? One idea is to have "the money follow the person". This means the person and their family will have a much bigger say in what supports are provided and who provides them. One example is that you can get your house or flat from a housing provider. Supports you get to live in this house or flat, like a personal assistant, may be provided by a service provider. This means you will have your own place to live but can use different supports and different providers depending on what you need. You can choose if you want a housemate or not, and you can choose who that person might be.


As agreed, the moderator did not seek to explain the detail of the proposal other than presenting the participants with a summary description. Accordingly, the findings summarised in this chapter capture the initial reactions of the stakeholders to the concept.

2.2 Overview

Many of the participants responded positively to the perceived greater choice and control over funding they felt this proposal would bring. However, some participants also queried the capacity and willingness of the government to deliver on this policy, fearing that they would be the target of budgetary cuts or inadequate provision and follow-up. While some participants were nervous about any change, and the possible loss of services or resources, others were more hopeful and less questioning.

2.3 Service Users

Three groups of service users participated in the consultation: people with physical/sensory disabilities, self-advocates, and people with intellectual disabilities. For the most part, the first two groups were capable of expressing themselves, either personally or with the assistance of a carer, and understanding the underlying concept proposed by individualised supports, as described in the alternative vignette formats. Conversely, those with an intellectual disability had much less comprehension of what the proposal entailed and generally agreed with most things suggested or remained silent.

2.3.1 People with Physical/Sensory Disabilities

This group were generally in favour of the proposal. However, they were unsure how it would work in practice. One person was concerned that people with disabilities would be forced to accept the model that currently operates in the UK, whereby people would take on full employer responsibility for their Personal Assistant. Others were concerned with issues, such as what would happen if the money was spent too soon, how the funding would be allocated, and the risk of the government reducing the amount of money available.

Comments made in favour of the idea

"Sounds good if they can pay for it".
"That's good".
"I like the bit where the money follows the person".
"I would like to have it added in that it is not means tested".
"The broad outline of that is the way to go but the devil is in the detail e.g. means testing, what actually happens. It is how it rolls out"
"Good if it gave power back to people, if they had a say about what they wanted and when they wanted it".
"It would be ok looking after my own affairs".
"I would like to hire my own Occupational Therapist (OT) if I got the payment myself. In some countries the money covers the OT and the equipment".
"The idea is good".
"Hopefully they will give you enough money to do what they say - buy in services".


Questions asked and concerns raised by people with disabilities about the proposal

"Whoever wrote that is thinking of the intellectual disability side and they are talking about the institutionalisation of people and moving them back into the community and that is ok but it doesn't go far enough. It doesn't mention choice of service provider and control over service and direct payment to contract service provider - not only the self-employed model in the UK. Personal Assistants (PA's) will contract with the service provider. Very few people will want to be employers - better if the Centre for Independent Living (CIL)take responsibility for timesheets, payments, PRSI. The uptake in the UK is so small that something must be wrong somewhere with direct payments".
"We need to be very careful. In Sweden, the amount of pay for a Personal Assistant is defined by law and it is indexed linked. In the UK it is minimum wage. We need to avoid the minimum wage model. Otherwise we will be competing with (company name) where people come in to help you one week and then move on somewhere else. If they decide to go that way, there has to be some protection for disabled people, many of whom are vulnerable people. A full-on commercial model will not meet our needs. We need some protection around the training of PA's and training for disabled people to help them become employers and manage the system. Also, people with an intellectual disability (ID) don't necessarily have the capacity to make decisions but supports can be put in place to help them make decisions - family boards, organisations. Time needed to build things up".
"I don't understand how this will affect me. I just get disability allowance into my bank account".
"It would probably come out cheaper for them if it were run right".
"It is not for me. I need care in a residential setting".
"Like everything in life, you might be nervous at the start. What would happen if you didn't pick the cheapest service? Would the government come after you? It would have to be evened up and have a contingency fund there in case".
"There are a lot of responsibilities for a person. It has nothing to do with your parents and it is up to yourself to speak up for yourself".
"There are not enough taxis that are accessible. There are not enough Occupational Therapists and other services before you can buy them".
"What happens if you spend your money too soon in the year?"
"They would probably be tight with the money and strict about what you can do with it".
"It would give the government opportunities to reduce the amount of money they give you - a big risk and it would be easier to take it from individuals than a service (provider)".


2.3.2 Self-advocates

The self-advocates liked the idea of having greater choice in their lives. They would all like to work in regular employment, the same as everyone else, in order to earn money, but more importantly it would enhance their sense of respect and show others that they are more than their disability. For this group of self-advocates, work means money, self-esteem, normality, and pride.

They would also like to have more choice in their living arrangements, with most people wanting to live outside their family home like other young adults. However, they also recognise that they would need support and that this would cost money. They know they are independent 'up to a point' and that none of them, for example, could travel on public transport without assistance. Most of them are happy to go to their family doctor and had not considered any other option up to this point in their lives.

The reality for this group of people is that they need support if they are to access services. At the moment, this support is provided through their services and families. However, they would like the opportunity to employ support under their terms, such as employing a Personal Assistant for a day-trip or holiday.

2.3.3 People with Intellectual Disabilities

This group shared similar views to those expressed by the self-advocates. The younger participants were generally living at home with their parents and for the most part, would welcome more freedom and independence. However, they would like to live close to their parents and in places which were familiar to them. They would all like to work in a 'normal' job which most of them felt capable of doing. A job would enable them to feel more normal, to wear work clothes, and to show people they are able to work. Transport is an issue for most but it is possible with the assistance of family members or carers. Some were capable of travelling alone on routes that were familiar. A few individuals, who are currently living, or seeking to live, more independent lives said that they would like access to direct funding if it enabled them to buy services, which they are currently not allowed to access. One young woman, for example, wanted to use facilities attached to a particular service but was unable to do so because she was not affiliated to the service.

2.4 Parents of Children with Disabilities[4]

parents The group of parents with older children were most in favour of the proposal, with a number of parents stating that greater choice they associated with individualised supports would be a good thing for their children. Conversely, the of younger children were much more sceptical of the proposal, believing that while it sounded good in theory, their experience with 'government promises' suggested the reality would be less than the promise.

Some of the main concerns raised by parents included fears that:

  • Children with profound disabilities would lose specialised services and equipment.
  • Services would cost parents more money
  • The scheme would not be sufficiently resourced
  • Parents would end up going to multiple locations in search of a fragmented service
  • It would result in a waste of money that would be 'gobbled up' in administration without any improvement in service provision
  • Existing inequalities in service access due to their geographical location would continue and possibly get worse
  • Essentially they would end up being 'sold a pig in a poke'.


They also raised a number of practical questions relating to the proposal, including how the money would be allocated and how decisions will be made on an individual basis. The following verbatim comments illustrate the reactions of parents to the proposal in more detail.

Comments made by parents in favour of the proposal

"It sounds good (most people in the group agreed with this view)".
"Choice is good.... At the moment they don't have a choice who they live with - they are allocated a pigeon hole when a space becomes available. You have to wait for someone to die".
"I delivered a programme for my son on less than €13,000 and it is a very full programme - he has an individual plan and he has choice - to meet his needs, not my needs. As a result, my family is less stressed. It has definitely brought him independence and control over his destiny, which he didn't have when someone else was doing it for him".
"I think it would be great for people with mild ID".
"I would like it. It gives people with disability a choice and that is good. They need to start from somewhere and show some progress to get people on board".
"Every person should have an independent advocate working for them, similar to those in Germany and the USA".


Comments made by parents who were critical of the proposal

"I would not be so sure that I would get the help I need (daughter with profound disabilities) for the money. I would need very specialised care... I would be the same - would we be cut off from the therapeutic staff? I don't want to have to buy it. I like the way it works now, as a team working together. I don't think I could cope with any change like that".
"I find that I am being charged gradually for things from her disability allowance. I wonder if this would make it worse?"
"The therapies are huge and the ongoing supply of equipment would be a huge loss for me".
"It sounds wonderful but it never works that way. It would not be resourced sufficiently in this country. I just have no faith it would be done correctly. What we would end up doing is losing what we have. We currently have some semblance of a central location we can go for services. You will end up going to 40 different places and they will all be saying no to you in various different ways. That would be the frightening thing".
"I agree. We are the sceptics. We have been around too long to have any belief in that".
"It sounds wonderful in theory".
"If you had competing services and they had to compete properly, then possibly it might work but there is not enough scale in Ireland to make it work. Maybe in London? There has never been enough money to fund initiatives in education or health. I can't imagine they would fund it sufficiently for it to make sense".
"Young adults who want to be independent will want this but to me they are being sold a pig in a poke. As much as I would love it to work, I have no faith in it at all".
"In a climate when the government is giving away so much money to the banks and not giving empty houses to people who need them, difficult to believe this".
"This is a nightmare situation for me - specialist units have to be dealt with by you yourself - lot of money wasted gobbled up in administration without any obvious improvements in service".
"Funding will need to be adequate to allow a person to access these services".
"Where you live determines what services you can access - transport is vital".


The parents had a number of questions about the proposals.

"What does it mean that the money follows the person? I understand that it means you are given a lump sum to buy services for a person with disability... I think it means that a decision is first made on the person's needs and money is given to buy services to meet their needs".
"Will it allow my daughter to live independently?"
"Where is the current funding going and who is in charge of the funding?"
"Where would you claim your money from?"
"Can you get funding in this way and still stay with the services you are with now?"
"Does it affect supply of maxi pads and things like that or her DA allowance?"
"How will the funding be spent? Who is in charge of the funding?"
"Will there be budgeting for two wheelchairs in a year if you out-grow one?"
"Would it allow parents to buy in extra night staff where there is a shortage?"
"Could you work in partnership with services to improve services? There is only so much money and if the money is spent on residential services, there will be no extra money for residential or will there? The money is given to the residential centre and not available to me. They won't pay twice for the service. If 5 people with complex needs live in a home and 1 person wants something different, who pays and who gets funds?"
"If my son is in a group home, will I be able to buy in staff for night duty and what happens if only some of the residents want to spend their money this way?"
"Will they automatically lose their support in group homes - will it be obligatory?"
"Will it affect their disability allowance or Trust funds?"
"A wonderful idea in principle but once they are mainstreamed, will we lose access to specialist services?"
"Is it about disabled people using VHI to access private services?"
"How will they make a decision on how much money a person will need - who decides?"


2.5 Frontline Staff[5]

The frontline staff were generally in favour of the proposal but only if it was introduced with sufficient resources to support it. Thus, while some staff liked the greater control it would give to people with disabilities, most staff questioned some aspect of the proposal, albeit without rejecting it outright. They would need further information and a reassurance from government that the proposal would be adequately supported before giving it their support. Overall, they thought that both individualised supports and mainstreaming, or parts thereof, should be brought in together.

Some of the main concerns raised by frontline staff included fears that:

  • Some people with intellectual disabilities would not be able to make an informed choice without the assistance of professionals in their service
  • The HSE or the Department of Health and Children do not have the capacity, resources or infrastructure to deliver or sustain the initiative
  • It would lead to difficulties for people accessing services as adults
  • Some people will get lost in the system without the assistance of independent advocates
  • No one will be accountable
  • Whoever shouts loudest will get most attention
  • People who really need a service may not be able to afford it
  • Confusion over how funds will be allocated and how a person's changing needs and finances will be assessed
  • What would happen if the budget is spent before the year ends
  • Possible abuses of the system if the person's rights and entitlements are not safe-guarded
  • Services may be affected by cutbacks during the recession

Comments made by frontline staff in favour of the proposal

"Sounds like a good idea".
"We would aspire to do a lot of that in our service, apart from contracting another service provider. We have people interviewing for staff. I like the idea of giving people a lot more say and control".
"It seems to be giving the person a choice (agree) to make decisions they feel is in their best interests regarding services for them".
"The idea is very good but with support and guidance to help them pick the right service. I am thinking of intellectual services and how many would be able to make that choice. They would need to be supported by professionals in making their decisions, probably from professionals in the service they are currently attached".
"I think it would work well with physical disability. I am thinking of a woman who is blind and a lot of her problems are to do with transport and her Personal Assistant is not allowed to carry her in his car. The funding she gets could be used to help her get to the various therapies she gets. It would be more difficult for people looking for wheelchair accessible taxis".
"It fits in with the primary care initiative".
"A family should be able to hire a support worker for less than (the current service provider) or another service and get more hours. This is the economic reality".


Some staff also raised a number of questions

"The funding that is coming down for an individual isn't sufficient now - yes, to ring-fence it is good but if the money isn't there to do what you want, how will it be financially sustainable?"
"What is disability? What about person living at home with parents who has never been registered. Will they have the same entitlements and at what stage can they enter the system and access funding? Knowing you have funding is giving a person choice".
"I think the idea is great but question what happens if the system is not in place to help people? At present, people access services. People who find it hard to advocate for themselves could possibly get lost. There needs to be somebody, maybe not our service, to ensure people are not lost".
"I don't think the HSE or the Department have the capacity at the moment or infrastructure to deliver on this. How do you make payment, assess need? Are there proper employment conditions or will it promote the black economy? It is a great aspiration but how realistic it is I don't know. I would like to think our organisation would support this, even to the point of hiring third parties".
"We should be working with families to develop capacity".
"Some families would have fought for this service and they got funding but it hasn't worked out. People with complex needs need variety of 'multi-d' teams and I know a person who puts in many more hours than allocated. Families are very demanding and taking away from other services. A brilliant idea but who is accountable?"
"Will it allow for an individual who turns 18 to make their own choices even though funding is coming through mammy and daddy? A lot of fundamental things need to be put in place to ensure the young man or woman is heard. They haven't got a voice and will need an advocate to speak for them".
"Will it mean that whoever shouts loudest will get most?"
"Funds have been allocated to people with intellectual disability in recent years and parents are aware of different amounts but the difference to this is that they would be the budget holder and would have to buy the services. They would realise how far funding stretches when they have to find a physiotherapy or Occupational Therapist. There is merit in shared services. A person who badly needs a service may not be able to afford it. There is no claw back from individuals who under spend. I don't know how it will work".
"Do you think the HSE will have its own agenda? Service users have always to be centre-stage".
"How do you divide out the funds? By disability (autism, Down Syndrome) or degree of disability (mild, moderate, severe)?There is a need for a system that will fit the different categories and not like now, where the more boxes you tick the more you get".
"The disability act gives you no guarantees".
"How often do you have to revisit a person's needs, to reassess their needs? Very few people's needs stay constant".
"The whole bureaucracy we have now - assessment officers - in the HSE and lot of work diverted to asserted and away from therapy. The system is being abused. It is a way to see a therapist but no guarantee of getting therapy".
"It is used in different countries and we should learn from them".
"It sounds great but when you drill down, what will happen?"
"I would have a concern that the funding may not be adequate as the person gets older. It would be easy to introduce this and it would be very good and wonderful but it would get people out into a very insecure environment and I personally would stay away from it. When people are unable to look after themselves, they would have to go back to their parents. This has to go further".
"I assume they would have a review and help to manage their services and finances. Maybe a review every three years?"
"If parents disagreed we would invite them in and speak to them as a team, telling them how beneficial this would be for their son/daughter. However, the bottom line is that parents would have the final say".
"I think provisions have to be made for every person with a disability for transport".
"What happens if your budget runs out early?"
"Can people profit out of it if they don't spend their money or if parents or carers get the money and they end up getting the cheapest possible service and they pocket the remainder of the money?"
"Someone needs to be an advocate, an external person should be involved".
"I know a man who got funding for a service he needed but he never spent the money"
"You know ward of court for people with ID, a form is filled out for every service needed. This type of system would ensure they get the best possible care and not allow abuse".
"What about the paperwork involved? Will it just create more paperwork and red tape and hassle for the person? Is it worth it or will there be people there to help them manage and make decisions".
"The biggest fear is cutbacks and this might be the first things to be affected during a recession. It would be very difficult to give reassurance that this would not happen".

2.6 Advocates[6]

Overall, the community and voluntary advocates were quite positive towards the proposal of individualised services. They felt it would give the person with a disability greater choice and an opportunity to live a more independent life. However, they also expressed a number of concerns regarding the way the system would work in practice, including:

  • How will a person's needs and funding be assessed?
  • The need for independent support to assist people go through the assessment process
  • What happens if the family of an individual with a disability disagree with him/her on what is best for them?
  • It could be open to abuse from family members
  • Individuals with Acquired Brain Injury may use the system to play one service against the other
  • Safeguards need to be put in place
  • What happens if there are cutbacks?
  • The proposal will not suit everyone
  • No one would be held accountable

Comments made by advocates in favour of the proposal

"Good idea (general comment)".
"You decide where the money goes".
"I believe in it fully".
"It would allow a person to do something different than the group - no need to go to bingo with everyone else if you don't want to but that would require much more management. It is much more involvement and takes lot more work - I think it is right and better for the person - and it is harder on the service".
"I approve of the money being identified as belonging to the person and people knowing how much there is and having some power around how it is spent. You start by identifying what money comes with people. When an ID person comes into a service, a value is attached to the service they provide but no one has access to that information. It is decided for them what level of service they need, whereas people close to him may decide that he actually needs other services".
"A good idea that money should follow some people but it won't suit everyone and this needs to be recognised. Important it is available for people it could help".


Questions raised by advocates

"I love direct funding. It is the best way that it follows the person but how does the person get judged as to how much money they need? If it is through the disability act and assessment need, half of people with disabilities will be knocked off immediately. Needs identified in your plan are not resource based - they will identify everything you need - but the delivery of the plan is resource based. That is my fear. For years, people with disability fought not to be labelled but the disability act will result in people fighting to be labelled. If you are not labelled, you will not get funding. If you are not strong enough to go through the assessment process - who brings you through it if there isn't an expert, advocates specifically - and personal advocacy service is on hold. I am just so scared. The idea of funding for person is great but..."
"The only issue is the person and their family. The family may not always want what the individual wants. An independent advocate might be a better way to do this. Otherwise, you are giving the power back to the family and sometimes that is the problem. Particularly with intellectual disability, where parents may prevent a young adult from doing something they want because control of funding is outside their control. There should be provisos - that say family have say up to 18 and that after 18 consultation is possible. It is a very difficult area where a person has brain injury"
"It is open to abuse from family but also by the person. An Acquired Brain Injury(ABI) person will typically make excuses whey they don't go to college but if the service is being provided by 3 or 4 services and there are not real solid communication and solid goals everyone is working towards, they will play one service against the other. It is their nature and different to intellectual disability. They don't believe they require services and would play one against the other".
"Safeguards need to be put in place to make sure it doesn't break down but definite way of going forward".
"I worked with a person who needed huge supports and parents recommended something innovative to the behavioural team and although money was there, the service provider wouldn't give details and be accountable. If the service provider was accountable to the person and family, that would be better".
"It requires a degree of conscientious that is not attached to the post staff apply for".
"What happens with cuts - will everyone be treated equally? This will allow a person's service to be even. At the moment, service for people in a residential setting is not even - some get more or less than others".



Chapter Three: Mainstreaming

3.1 Introduction

This chapter summarises the main findings from the consultation related to the second of the policy proposals, which sought to establish views on mainstreaming. The following vignette was presented to participants and they were asked to give their reactions to the policy idea.

Do you like the idea of being able to choose your own GP and being supported to do that? Do you like the idea of being able to use the same transport and housing as everyone else and being supported to do that? One idea is that services will not be segregated or provided separately to people with disabilities. Supports will be available so that you can access the same mainstream services as everyone else. This means that when you want to go to a training course, you can be supported to go to the local college or to local classes to get that training. You can also be supported to do other things you want to do and to choose who to do them with.


Mainstreaming is the key mechanism by which the Department of Health and Children's proposed policy of moving away from segregated disability services will be realised.

3.2 Overview

The notion of mainstreaming is not a new concept for most people. Over the years, various initiatives have sought to support people with disabilities access services, such as education. For the most part, these participants were in favour of mainstreaming, provided appropriate supports were provided, which would enable people with disabilities access services they needed. Conversely, they also raised a number of concerns and questions, including the perceived low level of services in rural areas, issues with transport, and the cuts in services due to the recession. Further details on these and other concerns by the different stakeholders are outlined below.

3.3 Service Users

3.3.1 Physical/Sensory Disability

This group of people were divided in their opinions of the merits of mainstreaming. While most people were very much in favour of being supported to access mainstream services and be 'the same as everyone else', quite a number of participants were apprehensive of change. This latter group said that they knew they were different because of their disability and that services needed to be different than mainstream also, particularly as many mainstream services are not perceived to be good enough for able-bodied people. Some people do not trust the government and fear a loss of services if this policy is implemented.


Comments made in favour of the proposal

"I think it describes the social model of disability pretty well and I would absolutely agree with it. I want to go to the same schools as everyone else (general agreement). I want to go to the same college, pub, use same transport etc. There will always be people with capacity issues where a segregated setting is more practical, such as people with an intellectual disability, but this is generally the way to go".
"I would agree with that. I was born with this disability and we were supposed to go to school for blind in Dublin. But my mother put her foot down and said no and we did go to the local school. It was very hard and we couldn't see the blackboard or anything. At that time you didn't get much support but we managed. If we had got a little support we could have gone on to do better things. Now there is assistance and it is so important. We grew up with our neighbours and friends and we weren't isolated. We were still part of the community - two brothers and sister with same impairment - we supported each other. We managed through sheer doggedness and one or two good friends".
"To be still part of the community is so important".
"We are happy to be in mainstream provided the mainstream meets us half-way. If the supports are there in mainstream - e.g., accessible transport, Personal Assistants to help you move around, special needs assistants in school etc".


Comments made by people who were critical or questioning of the proposal

"I don't know. I think able-bodied people have a different perspective on life and need different services than people who are disabled. Without wanting to sound different, our needs are different. I would prefer to be dealing with someone who had disability to the forefront".
"I agree but what happens if you need extra support early on?"
"I like the idea but..."
"If mainstreaming is to work, supports will have to be put into the mainstream"
"Supports have to be there, with different supports for people with disabilities because our needs are different. They need to participate with the whole community but they need extra support to help them along".
"The medical service is terrible for everyone".
"But the mainstreaming service is being cut back too. What will happen to PA's and professional supports".
"No-one wants to be labelled as disabled but we do have different needs".
"It is all about the detail and how it works. No one seriously trusts the Department".
"That would be nice if you got the appropriate support".
"A nice change (but unsure where they would go if not to their present service)".
"It would be nice to be in other places too and not stuck in (service)".
"Queues like everyone else would be ok. We are all the same".
"They will need some supports to compete equally with others. Their disabilities affect them. Ok if they get supports. Some people could not possibly compete physically in education. You have to give them proper supports and enough services to choose from to give them a chance".


3.3.2 Self-advocates

The self-advocates would welcome mainstreaming provided appropriate supports were in place to help them access services and facilities in their communities. While they recognise difficulties associated with living a more mainstream life, they would also like to move out their comfort zone and live more independent and normal lives. For them, choice is a good thing and, even if they make mistakes, they would like opportunities to make mistakes by themselves.


3.3.3 People with Intellectual Disabilities

Most people with an intellectual disability currently access some mainstream services, such as going to the doctor or using local leisure facilities, with the assistance of family members and staff from services. They generally like the experience, provided they feel safe and the task is familiar to them. While some of them would like to live more independent lives, others would be nervous about any change. In theory, this group would welcome more opportunities for mainstreaming but, in practice, most people would need to be monitored and supported on an on-going basis. Some participants were nervous about going to mainstream school and they liked meeting friends and staff in their current service. For most it would be a considerable wrench from their comfort zones to leave their service or to move out of their family homes.


3.4 Parents of Children with a Disability

In general, parents of children with a disability could see merit in the mainstreaming of services for people with disabilities. It is perceived to be an enabling process, which facilitates integration and access to community services. However, some parents also raised concerns regarding a number of issues, including:

  • The relatively low level of services that currently exist in the country for anyone
  • The problem of transport in accessing services and getting around generally
  • The fear that they will lose specialist support services when they are mainstreamed
  • The perceived gap between government promises and service delivery, such as the failure of current mainstreaming to deliver on what was promised for education and community support
  • The lack of monitoring that is perceived to take place in group homes
  • A lack of co-ordination between services for people with disabilities


Comments made in favour of the proposal

"It would be good if parents were given the money and allow them to get speech therapist they are not getting now".
"It is really mainstreaming of life rather than services. It is about accessibility. This option is much more 'doable'. They can enact legislation to ensure everyone signs up to it. You will need money eventually and to my mind it is a better way of doing things".
"It is going back to care in the community. A lot of the services will go with these two options. You will just have care in the community and support people who really can't live in the normal community. Everyone can be put back into mainstream".
"This option is more enabling - opening the wider community to you and not just throwing a wad of cash at you, provided we have baseline services everyone is entitled to".
"I like the idea".
"This would address the situation where (a particular service provider) takes care of the Northside and (and another) the Southside (of the City), which is completely rubbish. It makes sense from a service point of view".
"I am broadly supportive but I suspect that there is a movement towards community-based model of treatment and support. When you see what happened with mental health, you have to be sceptical".
"Ok if this was enshrined in the constitution or guarantees at least".


Comments made against the proposal

"There is not much choice in a rural area regarding a GP or schools. There is no rural transport or jobs in this area. The only thing being offered here is training through the National Learning Network".
"Transport is a major issue on quality of life of disabled person, especially in rural areas. That is why I moved to an urban area for the wheelchair. An amount of money should be allocated for transport from this fund"
"Supports have to be in place in schools if they can participate in all the activities offered to other students"
"It is wonderful in principle but I know a lot of kids with Down Syndrome who go to mainstream school but once they go mainstream they lose all the other services. In a special school, they would get a dietician, dental hygienist, physiotherapist etc but it says there that supports would be provided".
"Is this what this is about - going private and buying what you want? I have my daughter on VHI to make sure she gets services - like a lot of other parents".
"They can do what they want. They promise one thing but there is no one to monitor what happens in practice".
"I am cynical of both ideas".
"Will everyone be put into one service, so that no one gets a good service? Will Down Syndrome and Enable Ireland be in the same place?"
"People can go to college now if they have a disability - but they don't have support when you get there. Positive discrimination is very important. You can improve access to places but also necessary for people to have supports when they get to college, employment etc."
"We are being asked this on the day when 300 Special Needs Assistants have been cut?"
"I don't trust them but the idea is good".
"I have been through several of these think tanks and the information is already there and best practice in different countries around the world - Canada, Slovakia, Poland - there are models they can look at. Hence my cynicism, if there are models that work, why are they not looking at them?"
"Community support doesn't exist. I have lived in my house 7 years and have never had an OT, physiotherapy, or community nurse visit my son".
"Service co-ordination is very important and to have a checklist of what parents need to know even before there is a diagnosis and not have to wait years before they know their child's needs and the supports that are available for them e.g., grants to change house, support organisations to answer questions etc. everything should be in place to help children become independent"


3.5 Frontline Staff

The frontline staff had mixed feelings towards mainstreaming. Ideologically, they believe it is 'spot on' but they also feel that this does not always work out in practice. Some of the main concerns raised by this group included:

  • The inadequacies of the medical system for everyone, together with a need for greater capacity in medical services
  • The likelihood that people with disabilities would end up queuing for long periods of time just like everyone else
  • The belief that mainstreaming is not suitable for everyone, such as people with severe disabilities or behavioural problems
  • A concern that mainstreaming would result in more generalist and less specialist staff


Comments made in favour of the proposal

"I like all of this and it is where we should be going, offering people more choice. We need access to services that other people use. It is integral to the provision of integrated services and make sure the necessary supports are there. Third level colleges are just starting to get their act together and to understand what courses for people with disabilities should mean - through pressure from different organisations. If you are not out there, change will not happen".
"I wouldn't disagree with it - it is our aspiration".
"Ideologically spot on but mainstream needs to be looked at. For example, people with Down Syndrome are more likely to present with dementia in 30s or 40s but you have to be 65+ to access dementia services in the mainstream. Change will be required. The challenge is not for people to fit into what is already there but for existing services to open up to support, be welcoming and provide appropriate services".


Comments made against the proposal

"It wouldn't work for intellectual disability because I couldn't imagine them going on to third level education. I don't think the government would see it as money well spent"
"A lot of people have medical cards and they are allowed to choose their own doctor anyway. A lot of them have doctors who are miles away because he is the family doctor".
"A person might be worse off going through that system because they might not have to queue for those facilities at the minute. Whereas this suggests they will have to queue like everyone else in A&E and wait for physiotherapy".
"The queues are bad enough for able-bodied people at the moment. What if the letter from the GP is not opened or left on someone's desk. It would need a superior medical service".
"They want everyone to join the queues!"
"We have service users with behaviour that challenge us and who couldn't tolerate sitting in the A&E for 6 or 7 hours. We had a situation where the nurse wasn't listened to and one of our service users was told she would have to go through the normal procedure in the hospital. Two staff went in with her and it took 7 people to hold her down because they just wouldn't listen. It was totally demoralising for the nurses that went with her and the service user. That situation would not work".
"Maybe it would be okay for physical disability and mild intellectual disability but it is not practical for person with a severe disability".
"It is fine in principle but not always in practice. A lot of people with physical disability already go to college and they get support from disability officers".
"It is fine for some but not all disabilities. It is important that people who can be integrated are, with extra help for some".
"You wouldn't like them to lose supports and services they need to live".
"There will be a lot of Indians and not too many chiefs. It sounds to me that the HSE is deskilling. You will have more services available to you but you may end up going to x provider is cheaper rather than a provider with the necessary level of expertise. Now everyone will be a generalist and assessed by cost of services. If a GP understands disability very well and another doesn't but he offers a generic service at half the price, this is where you will go".
"The word is choice".
"My concern is that people wouldn't get lost. Will people be supported to fit into mainstream or will mainstream be adapted to suit them? Most of mainstream does not suit their needs (e.g., access to pub toilets)".
"We have problems with service users in our service who access their own GP but the GP doesn't understand disability. We have had to get advice from specialist GPs for people with learning disability with complex needs. When we bring a person to hospital, we have to bring staff to support service users with challenging behaviour".
"The mainstream may need someone who is specialist in learning disability to be employed by hospitals, public dental systems etc. To go into hospital now, you have to be in the whole of your health. Anyone unable to cope is either helped by family members or largely ignored. Mainstream services cannot cope - a 'one fits all' system cannot cope".
"Are they talking of everyone being mainstreamed? I am concerned that not everyone fits into a box. Individuals need space to say what they need and it is very challenging for staff in hospital if person has severe learning difficulties".
"The capacity must be there in hospitals etc".
"People have a right to a system that is safe and appropriate. There is talk of going back to 15 unit beds because of the economic situation. This is the language of the 1950s. Transparency is critical".
"Has anyone costed what the different options would actually cost - fear not enough money to do it right. I would love to see it happen but.....".


3.6 Advocates

The advocates had similar views to frontline staff. They believe that mainstreaming is a good idea in principle but that it is not always realised in practice. They can see benefits for the individual, provided appropriate supports are in place to facilitate more independent living. However, they raised some concerns regarding the current deficit in service provision, the time between reviews for people with disabilities, and the need for greater transparency and accountability.


Comments made in favour of the proposal

"Excellent, particularly around the GP. It stops a person always having to use family doctor and it will ensure files go with them. It gives them an opportunity to get independent advice and not be influenced or subject to collusion. But I would hate to go to the other extreme where special services and supports would not be there for people who need them. It is excellent but need to be cautious that money for supports are not cut".
"It could work very well with the first idea".
"A great idea once it is clear what mainstreaming is. To me mainstreaming is being able to go into a service but if you need certain expertise, it is available for the person with disability. If everything is the same for everyone, the weakest and most vulnerable will not be able to get in there quick enough or to get their issue out. There must be expertise specific to disability in the mainstream. Mainstream is great provided expertise and service is kept in there for those who need it"
"There are probably innovative ways of delivering this".
"That is what you strive for but there is a lot of work to get there if it is to be fair".


Comments made by people critical or questioning of the proposal

"That is the aim of a lot of services - to try and get them into college but they won't get into a college unless there are special compensations attached to the courses that are in National Learning Network, FÁS etc. I am trying to contact person in IT but she has all of IT to look after. Unless we put supports into the mainstream, they won't succeed in it".
"Who will be accountable?"
"Option 1 facilitates Option 2 - the ideal is if we were not resource led".
"Who decides what funding you get? A group I know are living in a house with a nurse and although they don't need nursing care, it costs more and others who may need the service of a nurse cant get it. Who makes these decisions?"
"It is very ad hoc".
"There should be regular reviews - many people are not getting reviews following initial assessment. Ridiculous that people don't have opportunity to say their life has changed or whatever. There should be built in review system and not just abandoned".



Chapter Four: Concluding Comments

The views documented in this report are relatively straightforward and self-explanatory. They represent the views of diverse stakeholders to two inter-related policy ideas that are being considered by the Department of Health and Children. The two ideas propose a movement away from segregated disability services towards the provision of individualised supports and mainstream services. For the most part, the participants in the 15 focus groups are in favour of the proposals and would welcome their implementation. Many of the participants responded positively to the greater choice and control over funding, which they associated with an individual funding mechanism, although some people queried the capacity and willingness of the Government to effectively deliver on this policy. They were also in favour of mainstreaming in principle, provided appropriate supports are provided which would enable people with disabilities access services they needed.

The on-going process of deliberation by the Department of Health and Children on the policy proposals means that specific recommendations are not warranted at this point. Rather it is envisaged that the many and diverse comments and questions raised by the stakeholders during the course of the consultation exercise will provide the Department of Health and Children with substantial information and ideas, which, together with other information at their disposal, should assist them with the content and promotion of the policies if and when they are implemented. Finally, it should be noted that the views documented in this report represent the opinions of stakeholders to two relatively tentative policy ideas encapsulated in two vignettes. Accordingly, further consultation is recommended when the policy ideas are more firmly fixed by the Department of Health and Children.

References

  • DOMEGAN, C. & FLEMING, D. 2003. Marketing Research in Ireland. Theory and Practice., Dublin, Gill and Macmillan.
  • NATIONAL DISABILITY AUTHORITY. 2004. Ask Me. Guidelines for Effective Consultation with People with Disabilities. Dublin: National Disability Authority.

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 half


What 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

The wording of the alternative vignette formats is as follows.

  • Paul - a person like them, who lives in his own house. He gets help/support with things like having a bath, washing or getting dressed. He gets help/support with cooking and cleaning his house, and with shopping and with making a list for shopping.
  • Sean - the same age as them, he has an older brother and a younger sister. He goes to a job during the week. His job is at a factory near his house. Sean works in the same place as his older brother and some of his neighbours.
  • Mary - the same age as them, she has an older brother and a younger sister. She does the same things as the. She goes to the doctor she likes and Mary's doctor is the same one that her brother and sister go to.
  • Ciara - the same as them. She likes to go to town to shop. When she goes to town or goes to sport she gets the same bus as everyone else. She has to wait for the same bus everyone else waits for.

The participants were asked if these scenarios were a good idea, if they would like to be the same as these people or not, and if so, what supports they would need.

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] This group was composed of people with intellectual disabilities who had received training in self-advocacy. A self-advocate is essentially a person who speaks up for him/herself, who has power over his or her own life, and who tells people what he/she wants. Sometimes they are assisted by a facilitator who enables and empowers them to develop their advocacy skills.

[2] A focus group is a particular form of qualitative research, 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, C. & FLEMING, D. 2003. Marketing Research in Ireland. Theory and Practice., Dublin, Gill and Macmillan.
[3]
The Department of Health and Children provided the wording for the two vignettes.

[4] Two groups of parents participated in the consultation. One group of parents had young children with physical/sensory disabilities and the other group of parents had adult children with a range of disabilities, many of them profound.
[5]
Two groups of frontline staff participated in the consultation, including speech and language therapists, social workers, community co-ordinators, administrators, occupational therapists, transport employees, public health nurses, personal assistants, and staff in intellectual disability services.
[6] One group of advocates took part in the consultation. They were employed in the community and voluntary sector for people with disabilities.