Lives hit by cut in service

Despite the Government's move last week to release a promised €50 million into disability funding, the sector must still cope with other cutbacks that reduce services

PAUL AND Frances Butler have lived together in their Cork home for over eight years. Each day they get up and go to work. Paul works as a graphic web designer and Frances works as a disability awareness trainer. They have built up a life together and enjoy socialising, going to the cinema and swimming.

However, they may now have to give up many of the things they enjoy, as their long-term future living together as a married couple becomes uncertain.

Paul and Frances are both wheelchair users with progressive disabilities, and last week they learned that their personal assistant hours are to be cut.

Both lived with family members until 1999, when the decision was made to become independent and move out. "We chose to live independently, and we have a very successful life together," says Paul.

"We have personal assistants for getting up in the morning, functioning during the day, going to work and getting back to sleep.

"It has given us an opportunity to be part of Irish society, to take up jobs and contribute to the workforce," he adds.

Paul and Frances' personal assistant hours are paid for by the Health Service Executive (HSE) through the Cork Centre for Independent Living, a grassroots organisation run by people with disabilities that helps people to live independently by providing personal assistant services, transport and advocacy.

Last week, the centre had to tell its 120 service users that it was reducing their personal assistant hours due to funding cuts. But there is hope of a small reprieve, as some of this year's disability funding, which was in doubt, is expected to be given.

Concern was raised by the Disability Federation of Ireland last week that €75 million in funding would be lost and would threaten disability services. This was because €50 million in multi-annual disability support was not expected to be released. On top of this, the HSE is imposing a 1 per cent across the board cut, efficiency savings worth €25 million.

While the Government has confirmed that the multi-annual disability funding will be given, the 1 per cent efficiency cut will stay in place. This is in addition to a carry-over cut of €45 million from disability services, announced in the last budget.

From this week, Paul and Frances have been told that they will be on a skeleton service of personal assistant hours.

"This is devastating for us," says Paul. "The hours with the personal assistant were tight already, and as it was we were just getting there. But now we will have to cut back on socialising, and grocery shopping and going for hospital appointments will be tricky," Paul said.

Both Paul and Frances have progressive conditions which need to be maintained through swimming and physiotherapy. These activities may be affected by the cut in assistant hours.

"We don't get enough exercise in our current situations," says Paul. "If we don't maintain muscles and exercise, it can be quite dangerous for our conditions."

Frances has Friedreich's ataxia, a progressive disorder affecting the nervous system, and Paul has muscular dystrophy, which causes progressive muscle weakness.

Paul may have to step back from his work as a graphic web designer, and this would reduce his income. While family may be able help the couple out, this can be upsetting and difficult, as Paul's parents are quite elderly and Frances is from Kerry and has no family nearby.

Since he moved out of home, Paul says his relationship with his family has become stronger. "There is no onus on them to look after our personal care, and they have come to know us as being independent - not someone they have to look after."

The cuts have caused a lot of stress for the couple as well as deep concern for their future if funding was reduced further. "Without a personal assistant service we could not maintain marriage together - one of us could have to go into a nursing care or residential home - and it is out of our control.

"We are living with the fear that this is just the beginning and that, slowly, other funding will be cut. This is a human rights issue; my life has come to a screeching halt. We will just function getting in and out of bed with limited hours and that is upsetting," Paul says.

There are over 80,000 personal assistant hours per year required for people with muscular dystrophy who presently receive no service, Muscular Dystrophy Ireland said last week.

Funding is still short and impacting on services across the disability sector despite the reprieve by the government on multi-annual disability funding.

When a €25 million efficiency cut and a budgetary loss of €45 million are coupled with a growing population and the economic downturn, the future looks uncertain for all disability services.

Paul Ledwidge is chief executive of St Michael's House, Ireland's largest provider of community-based services for people with an intellectual disability. He first brought the impact of the most recent funding shortages in the disability sector to public attention late last month, even before there were questions raised over the multi-annual funding.

Despite welcoming the Government's reprieve, he says there are still cuts and shortages. There is still a need for services to grow, especially as the future of funding looks uncertain.

"While the HSE's efficiency cuts can be made, you cannot take those cuts, balance the books and increase services at the same time," he states.

Ledwidge is unsure if the delayed multi-annual funding will be pro-rata when released (ie just €25 million for the second half of the year). If it is pro-rata and the sector is expected to make efficiency cuts of €25 million, effectively there is no extra money, he says.

"We had 16 people whose parents have died and were told by the HSE we only had funding for 10. This leaves a huge question mark over the other six," he says. "We have six child referrals every month, but receive no funding for them."

While St Michael's House has the biggest residential care waiting list in the country (over 208), it has been given just 10 new residential places in 2008.

There are 240 parents over 70 years of age looking after their intellectually disabled child at home, half of whom are on St Michael's House's waiting list. On average, 15 to 20 parents die each year and the waiting list grows longer.

Ledwidge's real worry is that there won't be any more disability funding until March 2009. "What happens to the children of the potential 15 parents who die between now and then?"