Jillian van Turnhout (Independent) | Oireachtas source

I join in welcoming the Minister of State to the House once again. I also thank my Labour Party Senators for tabling the motion and giving us an opportunity to debate disability services, particularly Senators Bacik and Moran.

I join in the welcome extended to the delegation from the Centres for Independent Living. I also welcome Mr. John Dolan and Ms Jacqueline Grogan from the Disability Federation of Ireland who are seated in the Gallery. The Disability Federation of Ireland is a good place for me to start. I advise everybody to read its recent report that was produced in February entitled Access to Life: Personal Assistant Services in Ireland and Independent Living by People with Physical and Sensory Disabilities. The report details the current difficulties faced by those using personal assistant services, their vulnerability to funding cuts, the inappropriate forms of regulation, and the failure of policy-makers to implement the Government's stated objective of full inclusion and self-determination.

I note that the motion began with the ratification of the UN Convention on the Rights of People with Disabilities which, as Senator Bacik mentioned, has not been passed yet. In fact, Ireland is one of three countries in the EU that has not ratified the convention and are joined by Finland and the Netherlands. We should hang our heads in shame for not ratifying the convention. Obviously we need to pass the decision-making Bill before ratification takes place. Even if it is passed there are concerns that the Government will be in difficulty when it comes to ensuring that the convention is applied.

For me the model of disability used in Ireland is a charitable-based model of disability services. I would advocate that we move to a rights-based approach.

The recession has led to delays in the implementation of our current disability strategy. In the case of school leavers with intellectual and multiple disabilities we have found places and bits of places and services. Unfortunately, when the time runs out for such services - which is three years maximum - another race to find bits of provision starts. There is no joined up thinking and co-ordination of supports.

Families and those with disabilities do not know who funds what. Many think it is voluntary agencies which raise the funds and, therefore, feel beholden to this charity model that we have developed. Most of these services are 80% to 90% funded by the State and they have seen cuts year after year. Transport to services have been cut, as has respite and funding for social activities. Those who complete third level education report that losing the personal assistants they had to attend college then leaves them stuck at home. They have completed this great achievement, they have gone to college, they have had these supports and they are told, "Well done, you have got your degree. Now you can stay at home." There has been no recruitment into the public service in eight years. Recruitment into the private sector is extremely difficult, with such high unemployment rates generally.

The quality of the services which have been developed from the 1990s have really eroded in the past decade. Those using the services are terrified of complaining because they feel they may lose what bits they have, not to mention the situation for many who are on waiting lists. Then, of course, there are the numbers who do not know. We do not have lists of those because they do not know that they are entitled to ask for these services.

Provision of personal assistant hours to new service users have slowed considerably. Instead, persons with disabilities are given minimal home help hours or nursing home beds. Home helps cannot leave the home and are present for the minimum amount of time. Often assessments for services are led by nurses and doctors, which means that it has a medical focus. The medical model of disability is one which has us in the state we are in with an institutional focus on the services that are needed.

The assessment needs to ensure those with disabilities can have supports to take part in employment, community and family life. The recent documentary on RTE, "Somebody to Love", is an example of the importance of persons with disabilities having opportunities to have relationships and families. Surely, all of that should be within their expectation and reach.

Personal assistance hours that persons with disabilities are awarded are for the bare minimum, in terms of personal care and food preparation. That is how the hours are awarded when, in fact, often what persons with disabilities tell me they need the hours for is communication and advocacy. Those with communication disabilities are often forgotten about. They need assistance in managing money, setting up homes, accessing transport, making complaints, being heard and being listened to. It is not all medical. It is not all basic needs. Lack of personal assistance hours has led many to stay in acute hospital settings. We discussed this previously when we discussed the issue of nursing homes in this House. These, for me, are the institutions of the 21st century for persons with disabilities.

Looking at the motion, the focus on value for money has been on the costs of services and the salaries of those working rather than on those with a disability who use the services which is where the focus on value for money should be. It should not be looking at waiting lists for services. It should be looking at quality of life. Little has been done on individualised budgeting. The scramble in the past few years has been to find places in day services and training for school leavers. I raised this issue with the Minister of State, Deputy Kathleen Lynch, last month at the Joint Committee on Health and Children.

In terms of those in residential settings, there are minimal moves to support some of them into the community. However, persons with a disability living at home with their families who wish to leave home or do not have support of families, or where their parents are getting older and can no longer care for them, face long waiting lists for services and housing. In short, we do not support adults with disabilities to plan their lives. The State funds voluntary bodies to provide services to a few. It presupposes that families will support them and there is little individualised planning. There are no rights to services under the Disability Act 2005.

In conclusion, we need a co-ordination of supports and assessment of need for all of those with disabilities. We need to promote the personal assistance as a key to support for persons with disabilities in self-determining their lives. Personal assistants are referred to as arms and legs by those with significant disabilities. A personal assistant is one who works on the instruction of the person with the disability and leads to a full life of one's choosing. Independent brokerage is required to help persons choose what is right for them rather than fitting them into services. "Lives" should mean providing persons with disabilities with the supports they need to live those lives. Currently, persons with disabilities feel owned by the services rather than owning the supports that they receive or feel they need. In effect, we must move away from this model of charity to a rights-based approach. That, for me, is not about the cost basis. It is about how we use that cost and how we empower those with disabilities.

What has happened with the politics of cuts means we do not sit down and plan the services. We do not ensure that there is individual planning and support for those with disabilities to determine their own lives. The past seven years - I have been going through reports - have seen persons with disabilities who have been silenced because they have to be grateful for the little support they get. They have to fight to keep the little things, and only for what is available.

There is little data, which is also a significant problem. We do not have data on the waiting lists for personal assistance services. We certainly do not know the numbers who could use the service. Sometimes those with a disability are not aware of it or they are prevented by those who oppose independent living.

I welcome this debate, but we really need to look at how we move forward. It is not only about the health services. As much as I want to live my life in many different ways, we need to ensure that we develop a personal assistance service that allows each person individualised planning. That would probably make economic sense too. For me, it is the rights-based approach that is the important way.