A PARENT’S UNDERSTANDING OF THE DISABILITY BILL—HOW IT WILL IMPROVE TO NOT IMPROVE SERVICES

This article is abridged from a talk given by Frieda Finlay to the Parents, Family and Friends Association at Carmona Services, Dún Laoghaire, on 5 October 2004.

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First, I have to say that I am not a lawyer, and reading pieces of legislation usually sends me to sleep. But I feel very strongly about this legislation, because of the awful situations some people with disabilities have to live with, and the unjust barriers that prevent people living as equal citizens of this very wealthy country.

I have worked on the issues of this Bill for several years. When the government brought out the first Disability Bill, just before Christmas in 2001, the disability community found it a very bad piece of legislation. It gave people no rights whatsoever, and would have prevented parents and people with disabilities going to court for such basic rights as education—something many parents have felt the necessity to do in recent years.

In a way, the 2001 Disability Bill was prompted by the public reaction to the Sinnott case, which had given a focus to the years of campaigning by disability groups all over the country. And yet the 2001 Bill contained no legal rights, even to an assessment, and services that could be provided under the Bill were extremely restricted. The Bill would not have improved the lives of people with disabilities. That was why we demonstrated so strongly—and the Bill was withdrawn.

In the Programme for government, we were promised a rights-based bill that would include ‘provisions for rights of assessment, appeals, provision and enforcement’. Through the National Disability Authority, the government established The Disability Legislation Consultative Group (DLCG). Deirdre Carroll and I represented namhi on the group. We worked very hard and produced a document called Equal citizenship, which we presented to government, at its request, at the beginning of 2003. The document was balanced and reasonable; it asked for rights for people with disabilities, but only to put them on an equal footing with everyone else and within a rational timeframe. As the key sentence in the document stated:

The DLCG consider that the right to independent needs assessment should result in services that are made available as of right for people with disabilities. These services should be identified to meet the needs set out in the statement of need. In the event of services not being available, a programme of measures should be put in place in order to realise these services within an established timeframe.

If a person’s needs are identified, then those needs should be addressed. However, we realise that the government can’t write a blank cheque, and we also know that not all the necessary services or staff are immediately available. For example, if a child is assessed as needing 12 hours of speech therapy a week, there may only be a therapist available now for four hours—and systems would be put in place to meet the required target as soon as possible. (It takes four years to produce a therapist—if we had started new courses at the time of the Sinnott case, more graduates would be coming on stream in 2005.)

Having rights-based legislation, and a real commitment to give effect to people’s rights in an agreed timeframe, would necessitate the opening up of training courses to meet additional staffing requirements. Such a commitment is an example of what we call the ‘progressive realisation of rights’. It means accepting that people have a right to decent services if they need them for independence and dignity, and building the capacity to ensure those rights can be met.

A rights-based approach is also essential, given the present varying level of services for people with disabilities around the country. Where two children need a wheelchair—one in Cork and the other in Dublin—the Southern Health Board may find funds to supply the child in Cork, but perhaps no funds are deemed to be available for the child in Dublin. In about half of the local authorities in Ireland, there are some funds available for adapting accommodation, but in the others the money has all been spent. In too many cases, the services one is entitled to depend not on need, but on where one lives.

We keenly awaited the new Disability Bill. All the different groups had been consulted. We met with the ministers, civil servants and the Taoiseach. They asked us what we wanted and we told them what we needed. Did they listen?

The new Disability Bill was finally launched with huge fanfare on 20 September 2004. Seven ministers attended, each armed with a draft set of sectoral plans for their departments. Each department was to accept responsibility for disability issues in their administrative area—employment, transport, education, environment (housing), health and enterprise. We will have to trust their goodwill, because the Bill does not demand anything of them, and they remain under no legal obligation to act. In any event, the draft plans cannot be initiated for at least a year.

Announcing a major plan with fanfare is one thing, but delivering it is another. Will people with disabilities finally be taken from the back of the political queue? It is very difficult to judge any piece of legislation which is so dependent on funding, especially when the whole Bill is peppered with, ‘where it is practicable’ and depending on ‘availability of resources’.

I have to judge this bill by comparing it to the DLCG document Equal citizenship. We asked for independent needs assessment leading to a statement of needs and coordination of resources, including individual funding where required, and services to meet those needs. What we got was an entitlement to an assessment, organised by the health board, followed by a service statement (of what is practicable or affordable) produced by a liaison officer. If, in the judgement of the liaison officer speech therapy is unlikely to be available, speech therapy will not be included in the service statement.

Under the Bill, if you feel that the service statement does not match the assessment of needs, there is an elaborate complaints and appeals procedure. Everyone involved in that procedure must also take account of practicability and resources. Whatever this is—it cannot rightly be called ‘a right to a service’.

One has to be deemed eligible under the Health Acts before qualifying for a service statement. Could this mean that a person just over the medical card income limit might find that they are ineligible for the help they need?

We have heard it said by various ministers that if we had rights-based legislation, parents would be going to court and lawyers would be getting all the money! I’ve often wondered where they get the notion that parents who cope with disability all their lives can’t wait to add the stress and pressure of a court case to all their other challenges. If people with disabilities and their families had a right to a basic service, it would actually eliminate all the attempts by families to persuade the courts that their children were being neglected by the state.

The DLCG looked for the right of redress, to validate rights. This Bill contains so many restrictions that almost no redress is possible for people whose rights are ignored. They can go to court on a point of law, but not, for instance, if there is a significant gap between the assessment of needs and the service statement.

The DLCG also asked for amended legislation to allow the Equality Authority to provide a mediation or arbitration facility. Instead, the Bill proposes a highly bureaucratic and complicated structure of complaints and appeals—but the structure has no power. The proposed appeals procedure presents apparent conflicts-of-interest, because both defending and appeals-staff will come from within the health services.

At the launch of the Disability Bill 2004, the government promised ring-fenced, multi-annual funding for disability. Indeed the Budget did spell out some of that planned funding. We will have to take it on trust that the money will indeed provide the necessary resources, and continue to do so. When Brian Cowen was Minister for Health he said that disability services had been under-funded for many years. He put a three-year plan in place for 2000 to 2002 which went some way toward ‘catching up’. To ensure proper funding now, there must be changes in the way services are delivered—with more accountability, and more control by the people who need the funding, not just large sums doled out to service providers.

There is also the question of what money is defined as being spent on the ‘disability’ budget. The government says it spends two and a half billion a year on disability—that includes such things as the work on making Luas and DART more accessible, for elderly people, mothers with buggies, and all the rest of us, as well as for people with disabilities.

For me the most important reason why there should be right based legislation is the concern of what will happen the next time there is a downturn in the economy—will people with disabilities return to the bottom of the pile again in five or ten years’ time?

This bill must be amended before it is enacted. The government is anxious to get rid of our pesky and troublesome lobby group. Maybe it is beginning to come to terms with the fact that we won’t go away easily. Once again we need to assure our local politicians that we still demand rights!

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