Seán Canney (Galway East, Independent) | Oireachtas source

I am delighted to have the opportunity to speak on this legislation, which provides for a transfer of functions. I welcome the Bill and support it. However, like other speakers, I am worried about what happens when it is passed. The most important issue with regard to disabilities is funding. Responsibilities going from one Department to another is fine but the funding needs to follow the service. I also have concerns about the HSE still retaining some clout in this area, although that may be for very good reasons.

I am member of the Oireachtas Joint Committee on Disability Matters, as is Deputy Hourigan, and the Chairman of that committee spoke earlier. We have been engaging with people with disabilities, advocates and representative groups for the past 18 months. Some of the stories we have heard have been pretty traumatic. There is a serious concern among parents as to what will happen to their son or daughter when they pass away. That concern starts when a child is born who is found to have special needs.

Early intervention seems to be very haphazard. The parents start a journey where they are fighting and they are in a battle from that day on. There is no clear pathway where they see a plan formulated or have a caseworker with them for the entire journey in order that they know what to expect, what will happen next and how it will happen. We have reconfigured some of these services in our region in Galway but we are now being told that we need to give it time to bed in. That is no good to families whose children need interventions. We need to make sure that there is a clear pathway.

Today, the committee was talking about the other end of the spectrum, namely education and employment. There is a huge learning curve for us all. Maybe our generation is not as well up as the younger generation. People with disabilities, insofar as possible, should be educated in mainstream schools so that people who do not have disabilities are able to grow up with them and understand them and it becomes a norm. Employers are cautious about taking on people. There can be a fear factor around what they are taking on. We have to take that away from people and make sure that when employers are hiring that there is a quota. We can start ourselves in the public service. In my time as a lecturer in GMIT, I have experience of people with disabilities and getting third-level education, getting their level 8 degrees and going on to full-time employment, becoming a beacon of light and hope. We need to see a lot more of that so that parents can have some reassurance that their child will grow up and be able to fend for themselves financially.

Personalised budgets is a very important area. The Indecon report showed that the cost of living with a disability is between €9,500 and €12,000 more than the cost of normal living. We need to make sure that when we bring in schemes that they are adaptable and flexible to deal with the specific needs of the person who needs them. We see that with the housing adaptation and mobility grants that are administered by the local authorities. They are great grants and schemes but they are only contributions. It is the same sum regardless of the type or severity of disability. The budgets need to be addressed towards the personal needs of the person who needs it.

We often talk about disability and maybe in the past we were playing lip service but I think the Minister of State, with our support, will make sure that it gets beyond that. Sometimes I feel that it is just a box being ticked to make sure that things are right. We have also created a great deal of mystery of how the pathway should be for a child or adult when moving services.

I must also raise transportation supports for people with disabilities. There is effectively no scheme to support people with disabilities because the primary medical certificate scheme has been deemed unfit for purpose. The courts concluded that almost two years ago. Instead of fixing the issue the Department of Finance, in its wisdom, adjusted the criteria to suit something else. Now the appeals board has resigned en massebecause it cannot work with it. There it is left. Whether it is the Department of Finance or Health, everyone is saying that it is somebody else's responsibility. I think it is our responsibility. We should not entertain leaving these people without proper supports for transportation. Something that is thrown at me and the Minister of State, who comes from the same constituency will understand this well, is that we are working on providing public transport that people with disabilities cannot access. However, there are a hell of a lot of places that I know of in our constituencies where there is no public transport, let alone a bus with wheelchair access. Let us cut to the chase. The mobility grants and the transportation support grants are gone. People are not getting that support; they are getting absolutely nothing. While people who did qualify for it are being supported we have created an unequal society. The retiring Ombudsman, Peter Tyndall's latest report before Christmas, was called Grounded. He did not call it that for any reason except that there is a huge number of people with disabilities who are grounded in this country because we do not give them the supports that they need. We have been talking about this a good while. It is important that we get on with it.

Thinking of all the money that goes to health, we need to see the disability budget being transparent around what it is going to do, who will be responsible for spending it and who will be responsible for delivering the services. That is what this Bill is supposed to do. I will support the Minister of State on this and I hope she will keep in mind that we do not want a plethora of laws and so on and then for things to start happening in three or four years. The Bill has taken 18 months to get here. It cannot take another 18 months or for people saying it needs time to bed in. That phrase needs to be removed from the agenda for the sake of the people with disabilities.

In respite for families of children parents and families still do not have what they deserve. It is important that we provide overnight respite services that are accessible to people so that we do not have people travelling from Galway to Limerick to get respite care overnight where they have to bring the child down and pick them up again the next day. That is not respite. That is actually hardship upon hardship and anguish.

I wish the Minister of State well in getting the Bill across the line. I do not know how many times I have said it at the Joint Committee on Disability Matters that after talking to people, we, as politicians, feel after that we are inadequate because we are not actually making the difference. We all come across things in our clinics and constituencies that we as politicians should not, and cannot, be proud of. Much of it comes down to a case where we have just told people with disabilities, "Yeah, you'll be okay". That is not the fault of the Minister of State, of course, but we need to make sure that while we are at it, and the committee will help with this, we will make a tangible difference to people who have disabilities. It is most important that when we finish with this legislation that then we get on with the real job. If there is any kind of monkey business going on in the Department of Health, we have to call it for what it is. We need people with disabilities to be served properly, in a way to which they are entitled under the UN convention. It is important that we embed that in everyone's minds, not simply in law.

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