Improvements in disability services ‘not nearly enough’

Brian Cowen’s budget was hailed as a triumph in recognising the needs of disabled people, but for those who care for them the reality is far different, Dan Buckley reports.

ANYONE who knows them can appreciate how much Mary and Denis McDonnell love and cherish their only daughter, Sinéad.

What they don’t know and what they rarely see is how much hard work and effort goes into showing that love every day.

Mary and Denis are now in their late 60s and have been caring for Sinéad, 41, for more than four decades. Sinéad is profoundly disabled and requires constant, 24 hour care, so it was with some trepidation that the couple, from Douglas in Cork, awaited the outcome of this year’s budget.

Despite the Government’s view of it as a giant leap forward for disability services, the McDonnells are not particularly impressed.

“In our case we have to care for Sinéad round the clock and every day is a struggle,” says Mary. “We don’t see that changing an awful lot, although the increase in the weekly allowance and respite care is, of course, welcome.”

The McDonnells get an extra €14 a week, which brings the carer’s allowance up to €153.60, and the respite grant also goes up. However, if they were fostering a child, for instance, they would receive an allowance of €280 a week, almost double what they get.

Sinéad is spastic quadraplegic with cerebral palsy and unable to control her movements, although she is, as Mary says, “articulate and efficient” at making her needs known. However, the sheer effort of physically handling her can be daunting at times. Sinéad also has a dislocated hip and cannot help in dressing herself, says Mary, who dismisses her own health problems as “nothing massive”, although on the day we met she had to attend two consultant specialists.

“She is as helpless as a newborn baby but she has a very sharp mind,” says Mary. That’s evident as Sinéad exchanges good-natured banter with her parents and is clearly enjoying being the centre of attention.

Their two adopted sons are grown up and live away from home, so the bulk of caring for Sinéad lies with her parents and they try to share the tasks equally.

“I’m the night nurse,” says Denis, who somehow managed to be very much involved in the running of Nemo Rangers Hurling and Football club for the past 50 years and is a past chairman and past president. If Sinéad is uncomfortable during the night, it is he she calls for assistance, although, as she herself remarks with a grin: “Sometimes it’s a bit like waking the dead.”

Mary does the day shift. Her day begins at 6.30am and a helper comes in an hour later to assist in showering and feeding Sinéad. “We are lucky that we have wonderful home help and nurses,” says Mary, who also acknowledges the support of family, friends and neighbours as well as the services of Enable Ireland, the Carers Association, Cope Foundation and the Cheshire Homes.

While Health Board nursing and support staff are excellent, trying to access health services can be a nightmare. The couple’s house in Douglas needs to be modified for Sinéad’s needs but it will cost a lot to make the changes and the maximum grant available is €20,000. “We have been trying for two years to get a grant, and the estimates keep going up. The latest estimate we got was for €66,000,” says Denis.

Mary is particularly scathing of health board bureaucracy and can still recall the endless struggle to get access to ordinary, every day services. On occasions, the difficulty in caring for Sinéad was eclipsed by the dispiriting drudgery of dealing with health board mandarins.

“At times we have found it absolutely exhausting. The Home Help service is discretionary and it took us a full ten months to get it. First of all, we had to have a report from Enable Ireland which Sinéad attends. After that there was a meeting with health board officials. Then that was followed by another meeting with three executives. It was all such a waste of time and resources.”

Mary recounts one bizarre episode that involved getting adequate nappies for Sinéad, who is doubly incontinent.

“When we applied we were told we had to keep the wet nappies for three days and we also had to log her intake of fluid over the same period. We did it over the weekend and then they took the nappies and weighed them.”

The upshot was they did not get the upgraded nappies as they were “under weight” although a year later a more humane process prevailed and they were eventually given a supply.

“We deal with the health board on an ongoing basis,” says Mary, who acknowledges that some of its workings are exemplary. “Many services are, in fact, very good but the real problem is lack of resources. Successive governments have neglected the needs of the disabled and while the increases in the budget are welcome they do not go near to solving the problem.”

The solution, she feels, lies in taking community care seriously.

“The Government, indeed the Taoiseach himself, has acknowledged that community care is best, yet it is very poorly resourced. Carers like ourselves, even with the increase, get far less than the cost of nursing home care. It doesn’t make sense.”

What would make sense, the couple believe, is a national Government strategy in dealing with the disabled, something which they hoped the Budget would bring but didn’t.

Enda Egan, the chief executive officer of the Carers Association, agrees. His organisation had demanded such an approach and was deeply disappointed at Government inaction on Budget day. “We need a national strategy for family carers and the Government need to say what they intend to do over the next couple of years. The carers are still getting the crumbs off the table.”

In the meantime, the McDonnells - along with tens of thousands of carers nationwide - try to cope as best they can, rising at dawn to begin another day of caring and nurture.

“As long as we have a breath in our bodies, we will continue to care for Sinéad,” says Denis. One look from Mary is enough to see that neither of them would want it any other way.