The stop-start manner in which Second Stage of this Bill is being debated leaves much to be desired. It is being taken piecemeal, which is akin to treating the matter with contempt. I hope this is not a deliberate attempt by the Government to dilute the issue and further frustrate the campaign for a proper rights-based Bill. Why did the Government get it so wrong? It was obliged to withdraw the 2001 Bill and it then introduced this Bill. Why did it not listen to the valid case put forward by the support groups for people with disabilities? That puzzles me greatly. Moreover, the manner in which the debate on this Bill is being conducted is most unsatisfactory. In reality, the Government is treating the Bill and people with disabilities with contempt.
We had a Bill in 2001 before the general election. That Bill was withdrawn because it was so inadequate. The Government then promised in the run up to the general election that a rights-based Bill would be introduced. It took three years to come up with this Bill which falls very short of what is required. The legislation was brought before the House on 4 November 2004. I spoke on it on 22 February 2005 and the debate was interrupted in the middle of my speech. Now the debate has resumed.
It is difficult to make sense of this type of debate. The way this Bill has been handled is farcical. We were promised a rights-based Disability Bill and more money for the disability sector. However, we now receive an excuse of a Disability Bill which has dashed the hopes of people with disabilities. Their hopes were raised only to be dashed by this Bill. The parents of children with disabilities are at their wits' end as a result of the lack of necessary services for their children. This Bill is every bit as inadequate as the previous Bill, which was withdrawn. Does the Government believe it can slip this new Bill through without much fuss because there will be no general election this year?
I and other Deputies have been lobbied extensively about this Bill. I received a letter from a group of parents in Galway whose children have autism and severe learning difficulties. The children are aged between ten and 11 and receive a respite service at Crannóg in the John Paul Centre in Ballybane. Unfortunately, this service will cease when the children reach the age of 12. In anticipation of this, their parents submitted a plan for respite and residential services to the Brothers of Charity in Tuam in 2002 and have been following up the matter since then. They are being further frustrated in their efforts.
I wish to quote a section from a letter sent by the Brothers of Charity to this group of parents on 25 February 2005:
The level of funding being provided by the Government and the Health Service Executive locally has not allowed in the last few years, and indeed will not in the years ahead allow for the provision of the additional services required. As a service, we are very concerned at the lack of funding available and continue to press locally and the Government about the needs of this group and other groups within our service.
This passage plainly spells out to the Government that services like those provided by the Brothers of Charity can be provided so long as the necessary funding is available. This responsibility lies with the Minister and the Government. It is perfectly acceptable for Opposition Deputies to be lobbied but the responsibility ultimately lies with the Government.
The same lack of funding and services applies in the case of older people with disabilities. When a person with a disability reaches the age of 18, he or she is excluded from the education system. Parents are concerned about what will happen to their children when they die or are unable to care for them.
This Bill falls far short of the rights-based legislation that was promised to people with disabilities. It fails to incorporate many of the core principles and recommendations of Equal Citizens, a report published by the disability liaison consultation group in February 2003. This report represents the collective and agreed vision of the disability sector on disability legislation. Given this level of activity, I am very disappointed by the current Bill.
The legislation requires major reconsideration and amendment if it is to vindicate the rights of people with disabilities. The Bill's definition of disability is too narrow and inconsistent with other legislation like the Equal Status Act 2000. The definition of disability in that legislation is much more inclusive. The definition in the Disability Bill would exclude many people with disabilities, for example, people with epilepsy, who require services. Under the legislation, people with epilepsy would no longer be considered disabled and would lose their entitlement to services they currently qualify for such as disability allowance, occupational therapy and supported employment. The Bill does not confer a right to the independent assessment of need and does not adequately address an individual's right to have his or her unmet needs addressed over time, as identified in the independent assessment report.
The appeals system set out in the Bill is excessively complex and cumbersome. Not only would the appeals procedure be difficult and frustrating to navigate, it would also create a great deal of expensive and unnecessary bureaucracy, resulting in resources being diverted from the provision of services. The appeals system should be independent of the Department of Health and Children and the Bill does not stipulate that Departments and public bodies must include people with disabilities in their plans and services with appropriate monitoring and accountability.
There are ten key issues in this Bill from the perspective of the members of the DLCG. The first is the definition of disability, which is too narrow. The use of such terms as "substantial restriction" and "enduring" and the exclusion of certain conditions and early intervention needs is a matter of concern. The Bill should provide a clear right to an independent assessment of need and for an individual's right to progressivity in their unmet needs identified in their independent assessment report. This should be done annually or whenever there is a change in a person's circumstances. The conveyance system is too complex and needs to be simplified. The appeals system should be independent of the Department of Health and Children and should be sited in another Department. The Bill should provide for a clear ring-fencing of disability specific resources. The Bill must provide for a clear statutory duty on the part of all Departments and public bodies to include people with disabilities in their plans and services with appropriate monitoring and accountability. The definition of public services in the Bill should encompass all public services provided in the public system by statutory or non-statutory bodies. The sectoral plan section of the Bill needs to take the wider needs of people with disabilities into account. For example, the Department of the Environment, Heritage and Local Government has not addressed the housing needs of people with disabilities. The impact of the Disability Bill on section 14 of the Equal Status Act needs to be clarified. There should be a review of disability legislation at least within a set period of years. I think the DLCG mentioned a period of seven to ten years.
The Government will not get away with this Disability Bill because the electorate will not let it forget the cruel and shameful neglect it has shown in its dealings with the disadvantaged. A grave responsibility rests on the Independent Deputies in this House who normally support the Government and Government backbenchers. I heard a number of Government backbenchers during the debate five weeks ago. I heard Deputy Cassidy outline all the faults of the Bill and state at the end of his speech that he would support the Bill on Second Stage. A grave responsibility rests on those members of the House who genuinely believe that this Bill does not address the needs of people with disabilities.
There are many anomalies in the Bill and so much could have been done to improve the lives of people with disabilities and their families. A particular hobby horse of mine which I have raised on several occasions in the House is a mother caring for a disabled family member who receives the carer's allowance, which is welcome recognition of the year-round work that she does. An anomaly arises if the woman's husband and chief breadwinner dies. She will qualify for the widow's pension and lose her carer's allowance the next week despite continuing to be a full-time carer 365 days of the year. That is cruel. I have asked the previous four Ministers to deal with this issue but I am still being ignored. I will continue to raise it for as long as the people send me back here to do so on their behalf.
The medical assessment of people on domiciliary care allowance must happen every year. Why is that necessary? It is a source of great frustration for the parents and the persons involved. The person's situation will not improve if he or she is assessed. It is a cause of resentment for all concerned and is a waste of time and resources of the Health Service Executive which carries out the assessments. When will this legislation be examined or updated? We have been slow in abandoning the 2001 Bill and introducing this Bill, which will be inevitably passed by the Government.
I wish to raise the issue of the disabled person's grant, which concerns public representatives at all levels. This is a farce because of the limited resources that have been made available to it. For example, I have encountered many cases in County Galway and Galway city in which people with disabilities who are unable to climb stairs due to advancing years or other reasons apply for a downstairs bedroom and bathroom. However, as there is so much red tape, delay and lack of funding for this essential service, the people involved have sometimes passed away before the work is completed. Several people have witnessed these instances and I submitted a parliamentary question on the subject recently.
The Bill addresses the health and education needs of people with disabilities, but they have many other needs, such as housing, transport, employment etc. For example, many people with epilepsy cannot drive due to uncontrolled seizures but are not entitled to a free travel pass unless they are in receipt of disability allowance. If they are capable of working but not driving, they must use public transport, which can be extremely expensive. Why should they not have a free bus pass? In the area of education, people often underperform by as much as two years in comparison to their peers despite having average ability. Most children are not psychologically or educationally assessed even if they experience significant difficulties. Access must be made available to assessment to evaluate the impact on learning, memory etc. Where seizures disrupt school attendance, supplementary hours such as are provided for some disabled children in home tuition should be considered at another school and not as an alternative.
There are many other aspects of this Bill. I ask the Minister of State why he did not consult the representatives of people with disabilities. Why was the Government so careless, why did it think so little of this? It was aware of the campaign undertaken to have the 2001 Bill withdrawn. Why did it not listen on this occasion to the articulate case put forth by the representatives? It seems that the Government is completely ignoring this case and is only going through the motions of putting this Bill through after raising the hopes of those people with what was promised before the election by the former Minister of State, Deputy Mary Wallace, who was banished to the back benches for her troubles. She promised the people a rights-based Bill but the Government had neither the guts nor the intention to deliver on it.