Gerry Doyle holds a photograph of his son Patrick, who receives residential care at a facility run by the Brothers of Charity in Ballybane, Galway. Picture: Andrew Downes
ONE apple cut in half, one-third of a cucumber, 14 grapes, a plum, three strawberries, a raw carrot, Doritos crisps and a particular selection of sweets.
Gerry and Mary Doyle, their daughter and younger son prepare the goody bag with utmost care, ensuring every item is included in the specified size and quantity.
They take it to their middle child, Patrick, when they go with him for his walks which are two-and-a-half miles long, conducted at a breathless pace to be completed in 45 minutes with the same route and crossing points followed on each occasion.
Patrick, 26, is autistic and his strictly observed routine is the way he makes sense of a world that can otherwise stress and disturb him. These are feelings his parents have often shared with him as they too struggle to make sense of a world that doesn’t appear to value their son.
Patrick was diagnosed as autistic at the age of 11, eight-and-a-half years after concerns were first raised about his pace of development. At first his sparse speech made doctors think, incorrectly, that he was deaf and later he was wrongly labelled severely mentally handicapped.
By 11, when the correct diagnosis was finally made, Patrick had no speech at all and the years lost to misdiagnosis and lack of proper services have never been made up.
“Autism has to be caught early because whatever potential the person has, it has to be grabbed immediately and worked on,” Gerry says with regret.
But it isn’t just timely intervention that makes the difference — it’s also the availability of appropriate and quality of support services. On that point, Gerry feels Patrick has been let down a second time.
Gerry was one of the parents group which approached the Irish Human Rights Commission in 2004 to ask for an investigation into the John Paul Centre, the residential and day care facility run by the Brothers of Charity in Ballybane, Galway, which Patrick was attending as a day client and which currently cares for him as a full-time resident.
The parents believed the state’s failure to adequately fund the centre left it unable to provide proper care or therapies and so breached the rights of its very vulnerable students and residents. The Commission agreed and, in a report published earlier this year, said the HSE should provide funding for improvements to the accommodation, an extra speech and language therapist, occupational therapist and psychiatrist and at least a minimal level of respite care.
It also said the Department of Education needed to review its involvement with the centre with a view to ensuring at least a minimal level of educational facilities.
With bitter irony the report was published on March 30, the same day that Finance Minister Brian Lenihan announced the first transfer of toxic debt to NAMA, his remark that the scale of the banking disaster was “truly shocking” ensuring him not only national but international headlines.
That news left the 415-page report on the John Paul Centre in the shade — in more ways than one. It got slight media coverage and the Brothers of Charity, far from getting money for all the improvements the Commission pinpointed, have seen their HSE funding cut by €2 million with further reductions planned for 2011.
Patrick Doyle lived at home, attending the day centre in JPC and availing of respite care, until June of last year when his parents made the heartbreaking decision to move him into residential care full time.
His behaviour had become too challenging for them to cope with, and while they still hope to bring him back to live with them again when his behaviour improves, Gerry fears any further cuts at the centre may reduce Patrick’s chances of making progress.
“He has been going swimming on Fridays recently. He was always a brilliant swimmer. This is a big help to Patrick, but if there are more cutbacks, this may be at risk.”
PATRICK has little interest in TV or other forms of entertainment that would help fill long hours and stimulate his mind. He has been out of what limited education was available since the age of 18 because, as an adult, he is not entitled to it.
“He’s in a very nice house, but he has regressed in the past due to a lack of stimulating activities. He needs plenty of physical exercise daily — walks, swimming and cycling. If he doesn’t get activities he becomes frustrated and angry and his challenging behaviour gets worse.” says Gerry. “It’s more difficult for staff to cope with him, not to mention his family and other service users.”
Patrick is on a high dosage of medication and Gerry feels this could have been eliminated, or at least reduced, if he had received appropriate services in the past and if he could now receive more therapeutic supports as recommended by the human rights report.
Patrick’s situation doesn’t surprise Frank Conaty of the National Parents and Siblings Alliance which campaigns for the rights of people with intellectual disability and autism. “There is still a shocking deficit in basic required services,” he says.
The Alliance is pleading, more in hope than optimism, that their members’ loved ones be spared the hardship that seems inevitable in next week’s budget.
Frank argues that needs don’t diminish just because funding does. “People with disabilities will not disappear or emigrate,” he says.
Inclusion Ireland, which also campaigns for people with intellectual disability, have a similar plea, urging that services remain untouched, and pointing out that many people have yet to enjoy even the minimum standards of care they deserve — such as those who remain inappropriately placed in psychiatric institutions.
The Disability Federation of Ireland said people with disabilities, their families and carers, were terrified of what would happen in the budget.
Its chief executive John Dolan said cutbacks now would undo progress that had taken years to achieve. “Surely we have to think long term about actions we take in the short term,” he said during the launch of the group pre-budget submission.
Despite their pleas, it seems inevitable that people with disabilities will take a hit next week. The Government had no qualms about cutting the Disability Allowance by €8 a week after last year’s budget. Add that to the loss of the Christmas bonus and the reduction was almost 6%.
The allowance doesn’t go very far — €145 of Patrick Doyle’s €196 weekly payment goes on his residential care fees and outings, leaving him with €51 — not much to improve his quality of life.
His parents pay for Patrick’s VHI premium and for most of his clothing, footwear and other needs. Their concerns are the things they can’t personally provide for their son — the professional therapeutic and educational services he urgently requires.
“What makes me really angry is that there are children of two and three years old now who could end up in the same situation as Patrick.
“We all know about autism now and how to diagnose it and what’s needed for it, but the feedback I am getting from other parents is that while their children are getting the correct assessment earlier, there aren’t adequate services to refer them to.
“The frontline staff in the John Paul Centre are very capable, dedicated, hard-working, caring people. That’s a comfort to me and my wife.
“But the problem is that the Government, even during the so-called boom years, did not provide enough funding for adequate or appropriate staffing for even basic services for our adults with disabilities.
“At the same time they had little difficulty spending millions on legal fees in the courts fighting parents who took cases to try to get those services provided for their children.
“In Patrick’s case, we’ll never get back the time we lost, but it’s never too late to start if you have proper therapy. As a member of the parent group here in Galway we will do everything we can to try and get the recommendations of the human rights report implemented. Some of the parents have fought for basic services for over 30 years.
“What I worry about is that if the services get worse — and definitely if Patrick is not getting enough activities his behaviour will get worse. It was an awful feeling for me and my wife the day Patrick went into full-time care — you feel like you are giving away your child. But we fear that things may even get worse and we dread the day when maybe we will not be able to see him at all.”
- Close to 100,000 people were in receipt of the Disability Allowance last year but, taking into account dependent spouses and children, 133,000 relied on it.
- The cost to the state was €1.1 billion, up 8.6% on 2008 although that figure may have fallen this year as the maximum payment was cut from €204 per week to €196 from last January.
- The four-year National Recovery Plan includes the Disability Allowance in the group of ‘working age’ welfare payments it says should be replaced by a single social assistance payment.
- It is not singled out for a cut, but the plan does stress that the state cannot afford the current level of welfare payments.
The plan also cuts by €600,000 investment in unspecified disability - projects under the Department of Community, Equality and Gaeltacht Affairs.
- Next week’s budget will be watched closely for any changes to the medical card, especially following remarks Health Minister Mary Harney in recent days when she said that while there would be no further restrictions on eligibility, different people could find themselves receiving different levels of benefits under the scheme.
- Almost all Disability Allowance recipients qualify for the Free Travel, and about a third get the free television licence, free phone rental and electricity allowance, or some combination of the three, so these are also areas they will be watching in next week’s budget.
- Many recipients are assisted by carers so there is also concern about what will happen to the Carers Allowance as well as the HSE-run home care packages and home help schemes.
- The Disability Allowance is means-tested and applicants, or recipients whose cases are under review, may be sent to a medical assessor for examination.
- It is notable that last year, for the first time in a decade, more people who were assessed were refused the allowance than were granted it.