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

5.1 Introduction

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

5.3 Independent Living

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

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

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

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

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

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

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

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

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

Some verbatim comments related to these areas are as follows:

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

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

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

5.4 Social and Community Participation

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

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

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

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

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

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

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

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

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

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

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

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

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

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

5.5 Service Provision

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

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

5.6 The Future

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

5.7 Concluding Comment

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

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

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

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