Oireachtas Joint and Select Committees

Thursday, 2 December 2021

Joint Oireachtas Committee on Disability Matters

Aligning Disability Services with the UNCRPD and Considering Future Innovation and Service Provision: Discussion ^

Dr. Alison Harnett:

I am very happy to share our submission as the national federation. The housing agency is co-ordinating the strategy consultation so it may be in a position to provide others, but we can certainly provide our housing submission if that is useful to the committee.

In terms of Part M of the building regulations and the need for the pipeline, in both our response to the draft State initial report and the UNCRPD and in our housing submission we have been advocating for welcoming communities. It is not only about having housing that is specifically for people with disabilities; it is about having universally designed housing that is adaptable as people's needs change. It is about having housing that is usable for young parents with buggies, for an elderly person who might have walking and mobility requirements and that is adaptable for people with disabilities. As Mr. Hennessy outlined earlier, there can be many different reasons a person might need an accessible approach. This can include additional space, for instance, to ensure that somebody can stay overnight with the person who needs support, or it can be for the storage of equipment. Therefore, flexibility in responsiveness in the allocation of social housing is required so that it can be understood that there may be additional space needed in response to particular needs and that a universal design may be required. That is something we would strongly support.

As we have earlier outlined, there are specific requirements that need to be upgraded in relation to the wheelchair liveable rather than wheelchair visitable. Welcoming communities would be the track that we have taken. It is for everybody and it needs to be welcoming. It would benefit everybody if we have welcoming communities and housing supply. This should be included in the built environment in our communities and not just in our homes, because there is no point in having accessible homes that one cannot get to. That means looking at transport and the paving outside the home as well what happens inside the home.

In terms of our projects and whether we have reviewed them in light of the UNCRPD, we were as thrilled as everybody else in 2018 when the State ratified the UNCRPD. However, of course the UNCRPD had been available to us before the State ratified it.

Rather than reviewing, and we need to constantly review our work, we set up those projects in line with the UNCRPD. The Informing Families project is a set of evidence based best practice guidance that was developed in collaboration with families, service providers and healthcare professionals throughout hospital community and disability services to look at the way in which we provide the diagnosis to families. We were told by families that many of them were not being given a hopeful outlook when being given the news of their child's disability. This is what we are talking about when we speak about the options that are there later in life and the ambition that we have for young people in their schools, employment and education. We need to help professionals to see disability as only one factor in a person's identity. We need to support families to celebrate the birth of a new person who has a disability as one aspect of his or her identity and that he or she is a brother, daughter, son, a welcome member of the family who will have additional challenges and support needs. Informing Families is hoping to develop that understanding from the very first moment a child is born, that we all need to have welcoming communities, as a society. Within Next Steps it is utterly possible for people to be supported at the best level of their potential. It is about beginning that from the first transition, which is the moment a family is informed a child has a disability. We developed those post the 2006 development of the UNCRPD so we were very much enabled and facilitated in our work through the thinking in regard to the UNCRPD. We certainly did that in Next Steps as well. We thought about what the UNCRPD asks us to do. It is around developing people's independence and supporting them in the choices they would like to make.

The older person's working group is a very exciting piece of work because it collaborates with the Trinity Centre for Ageing and Intellectual Disability, which through The Irish Longitudinal Study on Ageing, the IDS-TILDA project, identified key health inequalities that exist for people with intellectual disabilities, specifically older people. Through that, as service providers we listen to that research and to what are those health inequalities. It is important to link that back in with mainstream policies. Looking at the Healthy Ireland framework, a very healthy development in the past two years has been the development of the national memory clinic for people with intellectual disabilities. People who have a potential diagnosis of dementia have access to this pathway to have their diagnosis assessed. That had been unavailable in many communities. Some parts of the country had access to memory clinic services and others did not. The National Federation is part of the steering committee of the national memory clinic. There are many opportunities for us and we need to continue to develop all the time. We must continue reviewing and challenging ourselves in our practice. Through those initiatives we look specifically at what the UNCRPD asks us to do as service providers. Those initiatives aim to do that.

In regard to retrofitting, adaptation, cost, and fuel poverty, as a group of six umbrella bodies we strongly call for the Cost of Disability Research report to be published so that those additional challenges that might exist for people with disabilities in their homes, with heating and many other areas of their lives, could be responded to through a cost of disability payment. I agree with Senator Higgins that there needs to be a co-ordinated approach to retrofitting and any other initiatives.

I will defer to my colleague on the question around flexibility and how we support our budgets.