The research department of the National Rehabilitation Board recently produced a comprehensive booklet on respite care facilities for people with disabilities. Respite care has been defined as "the temporary care of people with disabilities of all kinds to relieve their social, physical and emotional stress and to provide relief to their primary care givers".
The booklet lists, on a health board by health board basis, those homes which can offer respite care. Looking at the lists one would believe there was plenty of help available but this is not the case in practice. The booklet is also divided into sections of establishments which will cater for people with learning disabilities, physical disabilities and a combination of both.
My research assistant, Ms Erin Dunn, telephoned a cross section of these homes, on my behalf, to ask about the availability of places and I discussed her findings with the National Rehabilitation Board. The response from the agencies was, in the main, depressing. The vast majority could not tell when respite care would be available nor for how long. Some said they had admissions committees which decided on the individual circumstances. Certainly there was no one who said "Yes, of course, help is available".
This was very much in line with the comments the Minister may have heard made by parents on television and in the press recently. Mr. Joe Little did an excellent interview on RTE's "Six-One" news a couple of weeks ago, showing the severe difficulties of a woman with an adult daughter with learning and physical disabilities and her problems in finding respite care.
The programme "Would you Believe" last week interviewed four mothers with younger children with similar disabilities and their plights would move a heart of stone. All wanted to care for their children but all longed for just a little life of their own. Parents are now starting to get angry and this issue will be raised more and more. We profess to be a kind, loving and caring population. Now we have money at last and I am glad to see the increase for the Department of Health and Children in the recently published Estimates for the Public Service. Surely people like these are the first we should help.
About 40,000 people are involved in caring for others in the home and about 9,000 are caring for children. Some of these people are dealing with relatives who are doubly incontinent as well as having severe medical problems and they are being ground down. Sometimes when I meet carers I do not know which person is more in need of care — the carer or the one to whom the loving care is being given.
No matter how parents try dealing with a disabled child it affects the other children in a family and, indeed, it may lead to the breakdown of the family because the stress may be too great. Some people simply want breaks for things like family weddings or to be sure they can go on holidays with the other children. Frequently, however, even these small requests have to be refused.
We are desperately short of residential accommodation and any that is available is immediately taken up by emergency cases so that planning respite care is impossible. About 1,500 places are needed at the moment. Agencies can only cater for their own clients so that those cases which may fall outside district groups are in a very difficult situation. There are lay people who are good and kind and take children who are not too difficult to deal with on a charitable basis. They are to be much applauded. Such people have made some sort of normal life possible for the parents of such children. The most severe cases, however, need professional help.
The agencies are there and if they had the money they could respond. At present, they have to ration help. Surely it is time, with the increase in money that has been given to the Department of Health and Children, to expand the facilities to a level which will cater for all those who need residential care.
About 1,500 places are needed. Recently I was contacted by a man in his eighties about his 47 year old son to see if I could get a place for him. His wife is dead and he has cared for his child without help for nearly 50 years. If beds were available they would free up facilities for respite care.
A society should be judged on how it treats its most vulnerable citizens. The Federation of Voluntary Bodies has run an advertisement in recent days in the newspapers asking for money to be taken from the budget surplus to support the needs I have mentioned. It is dreadful to see the added stress of raising awareness and money to run organisations being put on carers. If the Government does not respond to requests for help now, it will end up paying for care for the carers as well. Does it have to come to this before we will support their reasonable requests?
