Carers overlooked in disability debate

 

Sir, – As the mother and carer of a disabled young adult, I am delighted that we now have a Minister of State for Disability Issues with additional money to spend, and a strong disability advocacy movement that is changing perceptions of disability, and fighting to achieve change in the way that people with disabilities live their lives.

However, I am concerned that the interests of a small group – the 5,000 or so with severe and profound needs – are being ignored.

Apparently it is not politically correct to say so, but it is unlikely that people like my daughter will ever be able to “control their own lives” (Professor Gerard Quinn, June 13th). They need constant care, specialist or customised equipment and services, often have huge and complex medical problems and very limited expressive communication. They may be unable to speak intelligibly and may not be able to point, use an iPad or choose from pictures either.

But they should also have the right to a “good life” as described in HSE policy documents. And right now they are being excluded from the conversation.

Currently my daughter attends a wonderful mixed ability two-year day programme at the Central Remedial Clinic (CRC) and she appears very happy with this.

The CRC is a lively place with a host of facilities and activities that meet her needs, and while she has very severe disabilities, she is very sociable and has made many friends.

But apparently under the HSE’s New Directions policy she has to go into the community next year, a community that does not have the facilities to cater for her needs. Apart from coffee shops, lots and lots of coffee shops. And what sort of a life will that be for her?

New Directions also expects additional unpaid support from family and friends. That means me. At the same time no new respite places are to be provided, so no breaks will be available, no possibility of holidays, getting a job, or even going into hospital if I get sick.

The talk is of community respite, but where are the families willing to provide 24/7 care and the expertise and equipment to be able to provide it?

I hope that my daughter will be able to live with me until I can’t care for her any more. But without good support and services that day will come sooner rather than later. And then what will happen to my daughter under this new community-focused policy? No-one will give me a straight answer.

And I wonder is that because the only option will be an institution, since nothing else is to be put in place. It will not be one of the terrible residential facilities that have featured in the media, because thankfully they are to be closed. I imagine it will be a different type of institution – perhaps a hospital or a nursing home or a community home with care workers. But will that be any better or safer? – Yours, etc,

CANDI O’REILLY,

Glasnevin, Dublin 9.