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.
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.
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 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:
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 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:
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:
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.
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.
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 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 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.
[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.