Denis Naughten (Longford-Roscommon, Fine Gael)

I welcome the opportunity to speak on the Bill. As Deputy Kelleher said, I hope when it is passed it will be significantly amended from that before the House today.

For generations, a set of physical or intellectual characteristics outside the dreaded norm denied countless Irish men and women, their basic civil and human rights. Those characteristics established more what they could not, rather than what they could do.

Thankfully, today, society's discrimination against those who are "different" is lessening. That is thanks to equality legislation, the vast bulk of which is EU-derived, to the huge information and rights campaigns conducted by the disability lobbies and documents such as the 1996 report of the Commission on the Status of People with Disabilities, A Strategy for Equality.

The Disability Bill, long hailed as legislation that would definitively enshrine and guarantee basic rights such as access, has put paid to the hopes of thousands of people living with a disability and to the hopes of their carers. There should be no barriers to inclusion. The State has a moral duty to enable and to encourage, in every way possible, independent living for everyone with a disability. To make that a reality we have to create a system that asks people not what they have but what they need to make life better. We need to become a "can do", not a "could do" State for everyone with a disability and for their carers.

According to the Combat Poverty Agency, seven out of ten people with a disability are unemployed. It is unacceptable in this day and age that the ESRI has found that 72% of households headed by a person with a disability live well below the poverty line. It beggars belief that a mother, caring for a child with a disability, is no longer entitled to the carer's allowance if she becomes a widow and receives the widow's pension. Surely, such an unthinking policy confounds common sense and compounds human tragedy.

We need more personal assistance services, more aids and appliances, more residential and respite care, more day resource centres and services, more speech therapists, occupational therapists and recognition of the costs incurred by those with a disability in their day to day lives.

This Bill has been long promised and we had a previous false start with the 2001 Bill which was withdrawn following overwhelming rejection by disability organisations and activists. In 1997, the report of the Commission on the Status of People with Disabilities, A Strategy for Equality, recommended the enactment of a disability Bill including the right to an assessment of needs, leading to a statement of needs and a plan which identifies how those needs will be met. After many false starts and promises, this Bill was published in its newest guise last September.

There are a number of significant flaws in it. Disability is defined as an impairment resulting in a substantial restriction in the capacity of a person to carry out a profession, business or occupation or participate in social or cultural life. My colleague, Deputy Neville, has already examined this definition in great detail and the impact it will have on people with a mental illness. The area of disability as a whole must be considered. The Minister needs to sit down with the disability organisations to consider the definition of disability.

Many people are of the view that the current definition is being used as a filter mechanism to reduce the number of people who will be eligible to qualify for an assessment. The definition is based on a medical rather than a social definition of disability. Genuine concerns have been expressed about the definition. For example, the definition excludes episodic conditions and early intervention needs for individuals and this could be viewed as a restricting mechanism. We need to consider an all-encompassing definition which facilitates all individuals in the State and ensures they have proper access to the type of services needed.

It is critically important for this to happen at an early stage in a child's life. Far too often I have come across cases where a child has been neglected in the early stages of life. As a result more resources are required at a later stage to address that child's needs in secondary school compared to the investment that could have been made at an earlier stage with a resultant better outlook and quality of life for the child.

The Bill provides for a system of assessment of a person's educational and health needs. This is to be carried out by an assessment officer working for the Health Service Executive who will have an independent statutory function. However it is to be carried out without regard to the cost or the capacity to provide any services identified in the assessment. It is turning into a wish list which is wholly dependent on the availability of resources. It is pointless to have an assessment to find out that an individual requires A, B, and C, when it is known for a fact that B and C will not be available within the resources currently provided for such services in the immediate future. There is no provision or commitment that those services will be provided over time. It is critically important that the Bill should provide for the individual's right to progressively meet the needs identified by the assessment report.

Every Deputy in this House knows of children in their constituencies who have been assessed by an educational psychologist and for whom resource teaching support is recommended. The Department dragged its heels in processing those assessments. The initial backlog was in the waiting time for a psychological assessment. The partnership board in County Roscommon provided funding where families could not afford to pay for a psychological assessment. The backlog was then caused by the Department's delay in processing the applications. The reports have now been shelved and the Department of Education and Science has decided to give a lump sum to each school who can then disburse it as it considers fit. This is a return to the situation where the resources are not available even though the assessments have been carried out. My greatest fear about the provision in this Bill whereby assessments are carried out independently is that resources will not be made available.

I ask the Minister of State to examine the issue of the domiciliary care allowance which is a cause of great frustration to parents. For example, every year or two, a family of a child with Down's syndrome is hauled in before a medical assessor to decide if the child is still entitled to a domiciliary care allowance. Bar a miracle, that child will still have Down's syndrome in 12 months time, two years time and in 20 years time. When the child is initially diagnosed with Down's syndrome, it should not be the case that he or she must be assessed on an ongoing basis. First, this is a demand on the limited resources available to the local health authorities. Second, it is a gross insult to the parents and many of them are extremely annoyed with the way in which they are being treated. They are hauled in for this medical assessment on a routine basis, either to determine if the child is cured or if the parents are abusing the child. This is what the parents believe is being assessed. I suggest that the Minister of State adopt a sensible approach and that the public health nurse should make a home or school visit to certify that the child is still in need of that domiciliary care allowance, rather than this medical assessment procedure which causes much frustration to parents in receipt of that allowance.

I acknowledge there are instances where over time a child may not require the domiciliary care allowance but a child with Down's syndrome will have that condition for life. I do not understand the need for these medical assessments on a regular basis. Families regard it as a gross insult to be asked to appear before the medical assessor.

The complaints system envisaged in the Bill is far too complex. It needs to be simplified and made accessible. Accessibility is a key issue of this legislation. I refer to accessibility to services and my colleague spoke about accessibility to buildings. The appeals procedure as provided for in the Bill is not accessible. I ask the Minister of State to significantly amend this provision and ensure that it is not a complaints system that is cumbersome, expensive and incapable of taking a person's needs into account. An appeals system should be freely available especially when section 19 is very similar to section 47 of the previous Disability Bill which stops people taking legal action. The State acknowledges that people have a need but in order to meet that need, they cannot take legal action. Section 19 only affords a person a right to appeal on a point of law and not on the issue of the decision. The appeals system should be independent. It should be freely available and accessible and not cumbersome as it currently seems to be.

It is critically important that resources are ring-fenced and that this is provided for in the legislation along with a commitment for multi-annual funding. Far too often, people in the disability services area believe that when the squeeze comes — as was indicated by the Minister for Finance last night in respect of the health budget to pay for the elderly in nursing homes — those with disabilities will be the first to suffer because they are not the ones who will be able to shout the loudest. It is important that clear and concise mechanisms are provided to ring-fence resources.

When funding is made available for a service it is important that this service follows the individual client who needs it. This would be the single biggest step forward. The legislation would ensure that the service would be client-centred rather than service-centred, which is currently the case.

Turf wars are taking place among voluntary organisations across the country. Thankfully this is not the situation in County Roscommon where the Brothers of Charity Order is the one service provider but it happens in most of the neighbouring counties. A number of service providers seek to draw down funding from the Department. Unfortunately, their services are not subject to independent evaluation. While I was a member of my local health board, we did not have an opportunity to carry out any type of evaluation of services, although we saw the mess and turf wars. Every year the service providers made recommendations to the health board in which they presented a fait accompli. They divvied up the money, leaving health board members with no role. It is critically important that we eliminate the ongoing turf wars among an array of agencies.

If funding were to follow clients, the focus of services would shift towards individuals rather than services per se and people would be given commitments. I ask the Minister to shift the current focus from overall service to clients. This would be a major step forward.

I will give one example of the type of a turf war I encountered. A number of children from County Roscommon received speech and language therapy services in a facility operated by the Midland Health Board in its catchment area. The therapist providing the service was paid by the Midland Health Board which received resources from the Western Health Board to provide the service because the children were from its catchment area. Due to budget restrictions, however, a decision was taken to exclude children from County Roscommon from speech therapy services. As a result, children were left without services for 12 months, during which the Western Health Board continued to pay the Midland Health Board for the service.

This is only one example. I could provide numerous other examples of facilities lying idle because of disputes between different arms of the same voluntary agency or voluntary agencies competing with each other for clients to obtain capitation grants. This issue needs to be addressed. I ask the Minister to provide for client-focused services as opposed to allocating funding for services in their entirety.

While it is critical that we legislate for genetic testing, in which I have a particular interest, the issue should not form part of the Bill. I urge the Minister to remove Part 4 and introduce separate, parallel legislation to address genetic testing. The Disability Bill is not the correct forum for addressing the matter. It is wrong to shove in at the end of the Bill provisions on an important issue that needs to be teased out more thoroughly.

The Bill provides that a review of the legislation will commence on 1 January 2014. Ten years ago technology in the area of genetics was much less advanced than today. If someone had told us then how this technology would develop in the next ten years, we would have considered that person a raving lunatic. Technology has advanced in leaps and bounds and if it develops exponentially, this legislation will be obsolete by 2014. The Bill must be reviewed in five years at the latest, especially in light of rapid change in this technology. A broad debate is required on genetic testing and related issues such as cloning, on which we have no legislation. It is wrong in principle to deal with genetic testing at the end of a Disability Bill.

Consent for genetic testing is provided for under section 40. What is the position as regards a child? Will a child or its parents give consent? I presume a guardian must gives consent, although this is not expressly stated in the legislation. What is the position regarding children in care? Will the Health Service Executive be required to give consent? I do not want a repeat of circumstances that arose in the 1970s, when children in care were treated as guinea pigs for vaccine trials by the health boards. The Health Service Executive will have responsibility to protect children in care, while having an interest in ensuring that clinical trials proceed. This is wrong and I ask the Minister to remove the section from the Bill.

The position regarding the disabled person's grant is a mess. Its budget has been dramatically reduced and every local authority interprets the criteria differently. In County Roscommon, for example, an applicant may visit a general practitioner, rather than an occupational therapist. In addition, the level of resources available for grants is appalling. Unless a person is virtually bound to a wheelchair, he or she will not be entitled to a disabled person's grant in County Roscommon. Due to limited resources, many people with disabilities are being ignored.

I am disappointed with the Bill. I ask the Minister to make significant amendments on Committee Stage to ensure we have legislation of which all Members can be proud.

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