Meet the real people sidelined by this compromised Disability Bill

I HAVE received a number of letters recently, asking why I hadn’t written in detail about the Disability Bill published a few weeks ago.

"I suppose you can't find anything to criticise," said one letter, "and if you can't say a bad word you won't say anything, because you can't bear to give credit where it's due."

Well, I did write a short piece in the Irish Examiner the day after the bill was published. It was a wait-and-see piece, because the bill was published as part of an overall strategy. Much money has been promised, and the money, apparently, is going to give substance to the rights in the bill. But since then, I've read and re-read the Disability Bill. And every time I read it I get angrier.

This bill is going to create a huge bureaucratic infrastructure of hundreds of assessment officers, liaison officers, complaints officers and an appeals officer with the power to appoint a staff of civil servants. It contains all sorts of provisions that are either unnecessary or irrelevant to the needs of people with disabilities.

But when you strip the bill right down, its principal purpose, rather than giving rights to people with disabilities, is to refuse them rights or to sharply limit the circumstances in which rights of any kind will be meaningful to them.

The bill claims to confer one right on people with disabilities the right, in certain circumstances, to an assessment of their health or education needs. Arising from such an assessment, a person may get a statement of the services to which they might be entitled, provided they are eligible for those services, provided it is "practicable" to deliver them, and provided the exchequer can afford it...

How can something as complicated as that be seen as a right to anything?

BRENDAN ran a moderately successful business until his car accident. He was hit head-on by a drunk, and spent eight weeks at death's door in hospital. He lived, but with extensive brain damage. Now this tall handsome man lives in a wheelchair. He can't walk or talk and he drinks tea through a straw. His wife (who was his partner in the business) looks after his every need to the point of exhaustion. The business and the family income is gone, needless to say, and the only saving grace is the fact that they own their own house. Life is intensely difficult, because Brendan has violent moods where he flails around at his wife and their children. The fact that she has to do everything for him, from feeding him his meals to helping him on the toilet, means she has no life of her own. Friends have drifted away, money is very scarce, and their children are ashamed to bring their own friends to the house.

But Brendan is just brain-damaged. He's not sick. He has no health needs to be assessed, and no educational needs. He has care needs, residential needs, home help needs, and his wife and family have desperate support needs. But none of them are mentioned in the bill.

Even if Brendan was assessed as having some needs, the fact that they have a small permanent health insurance policy puts the family over the medical card limit (just). And the Disability Bill says that their eligibility under the health acts is one of the things that has to be taken into consideration in deciding whether any service will be provided for them.

MARY was born with cerebral palsy. She is 11 now. Her physical disabilities are profound and her immunity to all sorts of illnesses is low. She needs medication and at least, because she has a medical card, that can be afforded. But there is a bright active imagination in her, and it is bursting to get out. She needs physiotherapy to help her cope with the involuntary muscular spasms that dominate her life. She needs speech therapy to help her communicate the ideas that seem ready to burst out of her head. Her family have spent everything they have buying sessions with a private speech therapist, who was an enormous help to her until the money ran out. And even after the money ran out, the speech therapist worked with her for free for as long as she could because she could see the potential in Mary. But she couldn't herself afford to turn clients away in order to spend time with a girl who couldn't pay her.

Mary meets all the criteria of the Disability Bill, doesn't she?

She has health and education needs, she has a medical card. But there's a catch. There's no doubt whatever than any assessment would say that Mary has both extreme needs and enormous human potential.

So the assessment would inevitably give rise to what the bill calls a "service statement" a statement of the services to which she is entitled following the assessment.

But the person drawing up the service statement one of the liaison officers I referred to earlier is only supposed to include in it services that are "practicable" to provide, and must not include any services that cost the local health board more than it has budgeted.

Speech therapy might be the only gift that Mary's imprisoned spirit needs. But if there aren't enough speech therapists, she will never be "entitled" to their services.

MICHAEL has Down Syndrome. He is 43 now, and there are signs that he may be in the early stages of Alzheimer's. He lives with his mum, who was 33 when he was born, and she is in constant pain from arthritis. Michael looks after her, really. He cleans and tidies, and he's not a bad little cook. His dad died 12 years ago.

Michael can't read, can't write, can't count. More than once he has been cheated out of change in some of the local shops. He can't travel alone. If not watched he overeats. And he's not too careful about washing.

He will never be able to live independently, although there may, possibly, someday be a place in a group home for him, where he would live comfortably and under adequate supervision with some of his peers. That's what his Mum hopes for anyway. As she gets older and more weary, she gets more anxious about Michael all the time. It will all depend on the waiting lists and the emergency cases and of course, Michael will become an emergency case if his mum dies. But not until then.

And right now, Michael is as healthy as a trout. No health needs, and no education needs that the State is capable of addressing. But his future, his dignity, his

well-being, and his mum's peace of mind depend on Michael having a right to residential care not on an emergency basis, but in a way that will allow him to make the transition without trauma.

The Disability Bill is silent on this right. There is nothing in that bill for Michael. Nothing for Mary. Nothing for Brendan. A powerful catalyst for change, Minister Willie O'Dea called the bill when it was published. Not for them, minister. Not for them.