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.
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.
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.
"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".
"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".
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.
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.
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:
"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".
"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"
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:
"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".
"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.....".
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.
"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".
"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".