After watching the Prime Time programme on respite this week you would think that Official Ireland has a grudge against disabled people and their carers. We’re all an expensive annoying nuisance, and they wish we would just go away. So when we get angry and have to be given a bit of airtime, Official Ireland sets things up so that each interest group is guaranteed to piss off one of the others, and the smooth talking promises of the politicians are what remains in people’s memories.
Those poor carers, thank god something will be done to help them now. Now let’s have a cup of tea and watch something more entertaining.
That was the reaction that oozed from social media last night from those not actually involved.
While disabled people and carers were very angry on social media for different reasons…
Divide and conquer, yep that certainly seems to be Government policy in this area, as in so many others.
I put most of the blame for the programme squarely at the door of RTE, Ireland’s national broadcaster. Stuffed full of intelligent, highly paid people, there was no excuse for their presentation of disability issues.
It began at the beginning, when the presenter referred to the ‘burden’ that intellectually disabled adults placed on their carers. First black mark. Cue blood pressure spikes in disabled viewers all over the country.
You see any time that carers try to get their needs recognised, the publicity and headlines are always twisted around to suggest that these particular carers are being selfish and looking for sympathy because their lives are made so hard by the ‘burden’ of caring for their loved ones.
Our lives are difficult because the State will not provide adequate supports and services to disabled people and to their carers.
To make things worse, the show also featured parents discussing the difficulties of caring for their disabled adult children. In front of them. I guess most parents have to do this at times in meetings. But surely not on camera, on a programme where every detail would have been planned? Perhaps it was thought the disabled adults would not comprehend the conversation, but it made me uncomfortable, and I cannot understand why no one at RTE could see that this was very inappropriate.
According to Prime Time there are 28,000 people recorded as having an intellectual disability, and 69% of them live at home with their parents. That means 16,800 families where respite is needed. Yet respite beds are being closed all over the country, affecting the ability of carers to continue helping their loved ones to enjoy the lives they deserve. Respite is also needed in emergency situations, it’s a break for the disabled adults, a chance to mix with other people, and get used to being cared for by others, and perhaps a transition to living independently of parents before they die, instead of a traumatic transition after their death. These issues were covered in a much more balanced way on a follow up programme on Radio Kerry.
After the film there was a studio discussion with family carer Damien Douglas and Minister for Disability, Finian McGrath, TD. Personally I believe the Minister – who has a daughter with Down Syndrome – has made progress since he took office, and it was always going to be an impossible job to please everyone as there is a very long shopping list of disability and carer issues that need to be addressed. Unfortunately he said some unhelpful things on the Prime Time show:
On the postcode lottery for respite: “There’s better respite in parts of Dublin.” Perhaps, but many disabled children and adults in Dublin have had no respite for years, and that statement increases rural resentment at the idea that their needs are ignored in favour of families who live in the capital.
“I’ve restored the respite care grant.” This provides a welcome income boost for many families but cannot be used to purchase respite if there is none available. Even getting a sitter can be completely impossible, especially if the disabled adult has high support needs.
“We need to build the respite services around the person with the disability.” That’s all very politically correct, but the needs and situation of carers and their families also have to be taken into consideration.
He seemed to accept the need for 2000 respite beds over the next 4-5 years : “I’m determined to fight for that. We’re now moving on to investment in respite services.”
“Already this year I’ve managed to get 182,000 respite nights for adults with intellectual and physical disabilities.” I’d love to know who got these!!!
“In the next few months we’re putting in €16.2 million to develop home support services within the home for those families who don’t want to send their children or young adults to services outside the home. I’m also talking to people with disabilities and they tell me they prefer to have the respite services in their own home paid for by the HSE.” Cue an eruption on social media.
— ID DAD (@id_dad) April 13, 2017
Take note: The anger about this issue isn’t going to go away any time soon…