Disability activist Karl Cretzan from Waterford, wants to live independently, but faces daily challenges in life which are preventing this.
He believes that social housing rules and criteria are preventing him from accessing disability services, particularly at Cheshire Ireland’s independent living centre in Waterford.
Karl who turned 30 recently, has cerebral palsy. Back in 2004 Karl secured an award of €4.55m damages in a settlement of a High Court action alleging negligence in the circumstances of his birth at Waterford Regional Hospital in 1995.
That payout is to last him the rest of his life – but that was 21 years ago and prices and inflation have increased since then.
When he turned 18, Karl lost his disability support services, such as physio, speech therapy etc., and from that day forward, trying to get those supports back has been a fighting battle.
Karl has no medical card nor disability allowance and receives little to nothing from the HSE and government and no social welfare supports because of the payout he received.
He started receiving some supports from the HSE, in the form of help to get ready in the mornings and some personal assistance hours during the week, but as Karl pointed out, he needs 24 hour care – the HSE’s limited care package for Karl costs around €140,000 a year for two carers providing several hours of support, Monday to Friday – so how much would 24 hour care cost?
Karl’s parents have supported him since he was born, but he pointed out his parents are getting older and can’t look after him for the rest of his life.
Karl met with The Munster Express while he was on a recent two-week respite at Cheshire Residential Centre & Respite Facility, at John’s Hill, Waterford.
He has been lobbying both Cheshire and the HSE to consider a more permanent place at the independent assisted living centre for him.
“I need 24 hour care and Cheshire meets that need, 100 percent,” said Karl speaking to The Munster Express.
However, Karl can’t get a place at Cheshire’s independent living centre, because he needs to be on the housing list, but he can’t be on the housing list because he owns his own home.
“The council rejected me straight away [for the housing list] when they saw that I’m a homeowner,” said Karl.
As Karl pointed out, his situation is fundamentally about care, not tenancy. His current home cannot accommodate multiple carers or shift-based support, making it unsuitable for his care needs.
Karl’s issue was raised directly with the CEO of Cheshire Ireland, in which he sought clarification around eligibility for a place in Cheshire.
However, the news he received back was not favourable, with Head of Operations at Cheshire Ireland, Patrick Quinn, informing him that as an Approved Housing Body, Cheshire Ireland develops housing through the Capital Assistance Scheme, which is subject to strict conditions – most notably, that all tenancies are granted to individuals eligible for social housing (and that nominations are approved by the local authority).
“My need relates to complex care and support, not a housing need,” Karl pointed out to The Munster Express, adding that the current criteria “fails to take account of the realities faced by people with high support needs who are unable to safely live at home”.
“While my home was built for my needs, it is 24 hour care I need because I can’t go to the toilet, go to bed, wash, etc., on my own.”
The facilities at Cheshire Ireland’s independent living centre in Waterford are second to none and ideal for Karl.
During his two week respite, Karl lives in an apartment at Cheshire Ireland. There is a hoist device which helps him to get in and out of bed, use the bathroom facilities; the doorways are wide to accommodate access for Karl’s wheelchair; and other necessary equipment to ensure Karl’s independent living. There is also an intercom in the apartment which links Karl with the staff should he need help or assistance at any time of the day or night.
Karl praised the staff at Cheshire Ireland and said the government needs to ensure more similar facilities are made available for people with disabilities to help them live independently.
He slammed the government for leaving disabled people behind in the latest budget, noting that there were many promises made to disabled people and carers in the last General Election, but they have not followed through.
“Carers are essential for people like me,” Karl said.
He also noted there is only one physio and speech therapist for Waterford who works with people with disabilities and able-bodied people – and no-one to replace the therapist if that person is sick or on holidays.
With a huge waiting list to see the therapist, Karl said that the government should employ more therapists, which he describes as “basic essentials” for people with disabilities.
New houses
Karl noted that many new houses being built don’t appear to be complying with regulations in relation to accessibility for all, particularly for people with disabilities.
“I’ve seen some duplexes being built in Waterford – how are people with disabilities supposed to visit family or friends in these residences if there are stairs leading up to them?” he queried.
Campaigning
Karl hopes to start a campaign to highlight these issues. As he points out – these issues not only affect him, but also affect many other disabled people living in Waterford.
“Carers and family of people with disabilities haven’t time to go out and highlight these issues, because they’re so busy taking care of the disabled person,” said Karl. “I want to be the voice for other people with disabilities to highlight these issues affecting them,” he added.
Photo caption: Karl Cretzan at Cheshire Ireland Independent Living Centre in Waterford. Photo: Pól Ó Maonaigh
