Catherine Murphy (Kildare North, Independent)

I highlighted the issue of this Bill in my campaign literature. I have worked with several advocacy groups in the disability area for a considerable period. At best, this Bill requires radical alteration. I will highlight some of its flaws by using local examples to illustrate how it is unworkable in the format in which it is presented. It is not right-based in its currentform.

When people who had worked towards and argued for a disability Bill for many years were presented with the first Bill in 2001, it proved to be a major disappointment. Expectations had been built up about the provisions of that Bill, but it was withdrawn. Those expectations were further cruelly dashed in terms of this Bill. It is a major disappointment.

I was a local representative for 17 years during which time I have met too many families, so to speak, with issues in this area. I am sure the Government parties also met those families and that the number of families affected could be several multiples of the number we met. The family members I met cared for a person with a disability and encountered serious problems with the lack of services in this area. Those families were turned into professional lobbyists and fund-raisers. Often the lobbying led them nowhere because when they tried to find services, they discovered they did not exist. In trying to assist many of those families and individuals, I unpicked the services to ascertain where were the roadblocks. Not only did I discover an absence of basic services, but I discovered great inequity in how the services were provided where they were available. I will give a few examples.

When I discovered we had a serious problem with the disabled person's grant in County Kildare, I contacted the Department and asked for the national figures. I inserted the figures into a table on a per capita basis to see why County Kildare was doing so badly. I wondered if what I was seeing was evident in the rest of the country. I discovered that County Kildare got €5.70 for every man, woman and child to provide for disabled person's grants, which was at the bottom of the national list. On the top was Leitrim with €103.43. While I accept that geography can come into play, the difference is extreme. A correlation exists between the disabled person's grant and the local government fund. The lower a county's local government fund the lower are its disabled person's grants as one third of the fund is required to be raised locally.

Contradictions exist in this matter. How is it possible to provide services without having the funding for those services guaranteed? I looked at the local government fund to see if we could make a difference in terms of the amount of money we put in. We needed to put in one third if we were to seek the two thirds matching funds. I discovered that the entire increase in the local government fund in County Kildare was used in three areas: to buy water for the increased population; to pay for the wastewater treatment for the increased population; and to pay for benchmarking. The budget had no extra money to put into the disabled person's grant fund. Location in the country defines a person's experience with this grant.

Applicants for this grant from County Kildare are put into three categories. Those in category A are entirely dependent and are cared for at home. Those in category B have some independence and those in category C have more independence. Those outside category A have no chance of receiving a disabled person's grant to modify their homes because the list is closed for everybody else. A means-tested approach is being considered to try to filter those limited funds. A county like Leitrim might have very specific needs and I do not begrudge one shilling that goes towards this service. However, some counties have unspent funds while others have insufficient funds. Where people live defines the service they will receive, which represents unpardonable inequality.

A man whose wife was diagnosed with an incurable progressive illness contacted me yesterday. He said that he had spoken to several professionals and was told there was no point contacting the local authority, as it had no money for a ramp. This man has left work to try to care for his very ill wife and this type of obstacle is placed in his way. The Bill will not make a difference for that person. If it is not possible to get something as basic as a ramp, the Disability Bill will not make a difference.

Unless the Department of the Environment, Heritage and Local Government changes the method of funding of the disabled, nothing will change for these people, hundreds of whom live in my area. I will give a health board example. Even within the same former health authority area, wide differences can exist in the services available. For example, in support services for the elderly I found a wide difference between north County Dublin and County Kildare even though they were in the same former health authority area. When I refer to a wide difference I mean there was a chasm between the levels of services provided. The package of care was radically different.

We have been told the embargo on recruitment into the health service will not make any difference to people. As I live in a growing county, an embargo makes a big difference as the needs are increasing and the area has to deal with an increased population with the same resources. There is a perception that an area with a growing population gets an increase. In 1996, 134,000 people lived in County Kildare. It is conservatively estimated to now have a population of 180,000; we will have the census results in approximately 18 months. The front-line staff numbers in therapy services in County Kildare have not changed since 1996 despite a population increase of 50,000. This is a clear example of an embargo. The lack of speech therapy, occupational therapy and physiotherapy radically alters the life chances of people. The Disability Bill will not change this unless a change takes place in another Department and unless the resources are provided to make that change. I see no guarantee of those resources. The expanded needs I mentioned are not being taken into consideration. While I understand people are being trained in therapy services, those being recruited are often very inexperienced. It takes time to be able to provide first class services.

The legislation requires that public bodies should integrate service provision over time. Disability groups and individuals will state that while the building and planning regulations require that for every 15 rooms, hotels must provide one room catering for disabled guests, they do not define how these rooms are used. Often when people with a disability seek such a room they cannot get one. No counterbalance exists in terms of use. Unless all Departments and public bodies have a clear statutory duty and unless the funding is provided, we will not see the difference that people have the right to expect. People have stopped sitting back and accepting that we have never had it so good. We are starting to see advocacy groups mushrooming. We are starting to see people make demands. They have waited long enough, having endured the bad old days of the 1980s when there was no money for anything and we were told that when the economy was put on course and inflation reduced, everything else would follow. This has not occurred and people with disabilities are now taking direct action through advocacy groups.

I and others have been contacted by advocacy groups which have identified two areas of concern that must be addressed. The Bill fails to ensure that people with disabilities have access to the high quality, specialist support service they require to participate and contribute to society. It fails to ensure that all public service planning and provision takes into account the fact that there will always be people with disabilities and their number will increase as the population ages. The legislation should require that the disability issue be incorporated into the design of all public policy and planning decisions.

In addition to these two key areas of concern, advocacy groups have elaborated a further ten fundamental flaws in the Bill. The definition of "disability" is too narrow and excludes certain conditions and early intervention needs. As such, many people will be excluded from the assessment procedure. The provision that disability must be "enduring" is indicative of the Government's failure to take a progressive approach.

Advocacy groups want the Bill to provide an explicit right to independent assessment, which is a positive rather than negative demand. It must also provide for an individual's right to have unmet needs progressively identified in the independent assessment report, either on an annual basis or in the event that circumstances change.

When I hear that a complaints system is too complex, it indicates that complaints are not wanted. This is a valid criticism of the system which must be simplified and made more accessible in line with the demands of the advocacy groups. In addition, the appeals system needs to be independent of the Department of Health and Children. It could, for example, be accommodated in another Department.

The Bill must also provide for clear ring-fencing of disability specific resources. Without this, it will not make the difference people have a right to expect. The legislation must also provide for a clear statutory duty on all Departments and public bodies to include people with disabilities in all their plans and services and appropriate monitoring and accountability mechanisms. My comments on health boards and local authorities are a case in point but by no means exhaustive. One could draw attention to failures in almost every Department in areas in which it has responsibility.

Public services should include all services provided in the public system by statutory and non-statutory entities. The Bill does not take wider needs into account. For example, the Department of the Environment, Heritage and Local Government has not addressed housing need, a fundamental issue for those without a roof over their heads or no entitlement to housing. Local authorities often take a two-tiered approach to housing provision by acting differently when housing persons with physical disabilities and persons with mental health problems. Not only is more housing required but the approach to housing allocation must also be addressed.

Clarity is needed on the Bill's impact on section 14 of the Equal Status Act. The advocacy groups also seek a review of the legislation, if it proceeds, after three years, which is a valid proposal given the large number of deficiencies in the Bill. The Government should accede to this request because a review will offer an opportunity to revisit certain aspects of the legislation and, unfortunately, prove that it is not rights based.

See this speech in context