Cork TD on how son’s autism allows him to understand challenges facing other families
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Parents of children with additional needs are "haunted" trying to access services, the chair of the Oireachtas committee on disabilities said.
In an interview with the , Cork North-West TD Michael Moynihan said his own son's autism diagnosis had given him greater insight into the challenges facing parents of children with additional needs.
The committee which Mr Moynihan chairs recently published a scathing report on Ireland's progress in implementing the UN Convention on the Rights of Persons with Disabilities. It found under just four of 33 headings had Ireland done enough.
Ireland ratified the UN Convention on the Rights of Persons with Disabilities in 2018 but has yet to ratify the Optional Protocol, which establishes an individual complaints mechanism for disabled people who allege their rights under the convention have been denied.
The convention itself calls on the State to move beyond anti-discrimination legislation and harmonise all national laws with the obligations of the convention.
Mr Moynihan said the committee's engagement with people who have disabilities and advocate on their behalf has shown more must be done. Some of the problem, he said, comes down to red tape at departmental level.
"All people with disabilities would tell us when they came before the committee constantly was 'we want to live independently, we want autonomy, we want to be able to survive on our own and not to be dependent on family members'.
"Before Christmas, we had some of the service providers, the section 39 and 38 organisations in before us. And we were asking why wasn't there more accommodation for people with disabilities?
"The local authorities are cramming to try and find accommodation for everybody. But heretofore there was what was known as a Cas programme, a capital assistance scheme within the Department of Housing. And it hasn't been that effective over the last couple of years because of bureaucracy."
Mr Moynihan said the HSE, local authorities and Department of Housing are all involved in the provision of services, but the level of unmet need for those with disabilities was not yet clear.
However, he estimates a third of need across Ireland goes unmet. A particular pinch point, he said, was in respite for family carers.
"People in CHO 6, Cork and Kerry could be offered something in the north of Ireland. If you have somebody in a State service saying, well, we put your name down, but it could be offered somewhere 100, 150 miles away, it takes a particularly callous attitude within the disability services to even say that, you don't even allude to it.
"And the culture is that we need medical services for people with disabilities, but that is moving on."
The Fianna Fáil TD, who was first elected in 1997, has long advocated for additional services in his constituency, but says the diagnosis of his son as autistic in the last days of the 2020 election has helped to better inform his view of the struggles facing families.
"I would have worked very closely going back since I started with the St Joseph's Foundation in Charleville and we've done a lot of work, we've built and developed an equine centre. You could not believe the difference when kids and adults go up on on horses with the rhythm... it goes back to nature. I would have worked on that and the hydrotherapy pool. And now we're as a family using it ourselves.
"As a neighbour said to me, you know, it was a destiny.
"I would have worked very well with families going back over the years and would have supported them hugely. In terms of access to carers, access to services. There's no doubt about it, but I understand the challenges way better now. Because it has given me a hands-on approach."
Mr Moynihan said his experience as a public representative had given him and his wife Bríd "an air of the challenges that lay ahead" following his son's diagnosis, but said "nothing really prepares you for it".
"You have to walk in the shoes before you even understand this. You're constantly researching, you're constantly looking you're constantly advocating to see is there something better that can be done?
"Every parent you know, they're looking at how they can advance or make their kids lives better. And I mean when you have a kid with a disability or additional need, you're no different to anybody else. You're trying to advance and look out for them and see what are the challenges are."
Families who come to Mr Moynihan and his committee are vital, he said, adding the lived experience was crucial in informing the State's approach.
"[We meet families] that are constantly fighting for services, constantly checking, they're constantly looking for advancement in the services that that they want for their children. And of course, then they're constantly saying, 'what's going to be the future? How do they plan for the future?'
"Families have to fight for services. The difficulty is if your kids have additional needs, there's no roadmap, there is no way you can pick up the phone and such a person will guide you as to, you can do this, this or this or this is the way you do this.
As a parent of a child with additional needs, Mr Moynihan said peer support from other parents was "vital" and could "test and push the system".
However, he said many people "are not willing to ask for help" and urged those parents to "reach out" to NGOs, the State and public representatives.