BY MICHAEL BRESLIN

A new group 'The South West Carers Forum' met for the first time recently. The group comprising parents and/or carers of children and young adults, adults, or elderly who have physical or learning disabilities, mental health problems or other special needs.

Its spokesperson explained the large attendance reflected the concern of parents and carers, 'distressed with the complicated process of arranging care for those unable to care for themselves'.

One Enniskillen family, the Hamiltons typified their dilemma. Albert Hamilton and his wife, Margaret are parents of 26-year old Nicola who has a complex learning disability and requires one-on-one attention 24/7.

Speaking to the 'Herald', Mr Hamilton listed a litany of frustrations extending back 14 years that involved a two-year battle with the then Sperrin Lakeland Trust for Nicola to be allowed the use of day care facilities under its 'direct payments' programme.

But, this was only one headache and, indeed, such is the Hamiltons' dilemma taking on the system as individuals that the fact they haven't had a break in 14 years was a throwaway remark.

The parents' story of experiencing extreme difficulty in obtaining Social Services funding for suitable care and facilities for their daughter that has induced all that anger and frustration kicked in when Nicola reached the age of seven years.

"She had a successful and fulfiling education at the Erne Special School and Elmbrook School," Mr Hamilton explained. "It was whilst she was at Elmbrook that it was established that Nicola required stimulation and one-to-one interaction. Her attention span is very short and she has difficulty participating in activities or crowded places.

"She received that attention at Elmbrook, and we have the greatest admiration for and owe a debt of gratitude to the teacher and classroom assistants in Elmbrook."

But, it was then their problems began.To begin with, the Hamiltons found difficulty in obtaining a placement in adult day care when Nicola left full-time education at the age of 19. She eventually achieved a placement for five days a week and remained in day care at Lackaboy, Enniskillen (where there are two day care centres) until June, 2005 when the facilities were withdrawn because Nicola was judged to be, 'disruptive'.

"We understand," her father explained, "because of lack of trained staff available, they were unable to cope with her. We were asked to take her home. Then, when we had her stabilised at home, having withdrawn her medication, there was no placement for her."

It was at this stage the Hamiltons were asked to consider the 'direct payments' option. This they rejected in that, under it, their daughter could not use day care facilities to go with the 18 hours a week' care package.

They fought the case for two years with the help of the Law Centre and, finally, the Hamiltons were given six hours of day care per week with one-on-one attention.

"Even this solution," he said, "is not yet stable. Sometimes only three hours are provided." To compound their problems, Albert and his wife have had to go into hospital at separate times and, when Albert was an in-patient, day respite care of nine hours a week for Nicola was established but later withdrawn because of staff shortages.

"I spend all my time battling for services," he said. "My wife and I never have a chance to relax to do anything as a couple. Day care venues are unsuited and overcrowded. They are not designed for special needs, and it's not the staff's fault. They are over-burdened trying to cope with too many clients.

Today, he explained, his daughter's condition is still not properly diagnosed, and the reality of a new care and assessment centre for adults like Nicola who have learning disability, in Derry, was out of reach in every way.

"Those with disabilities don't cope with change easily. They like a familiar pattern and routine. Then you have the travel aspect. Now, with a brand new hospital being built locally, can we not have some of these facilities included within its structure?"

Hence the need for a forum where those in a similar situation can get together and gain support and strength from talking to others. For achieving that goal, Albert and his wife, through the 'Herald', expressed their gratitude to Caroline Kelly for her independent advocacy and, also, to Claire Devine from the Fermanagh Voluntary Association for the Disabled. Asked to identify those areas where the malaise lies, Mr Hamilton highlighted the need to cut the bureaucracy and eliminate, 'the endless layers of management' within the Western Health and Social Services Trust. He instanced the length of time for a Social Worker to get a decision on resources for their client 'they have four or five levels of management to go through'), and the knock-on demoralising effect on the Social Worker when he or she realises that the services/funding they have sought for the carer/person cared for is going to be turned down.

"And', Mr Hamilton added, "agreed need is never documented, which means it's easy for senior management to back track after they tell you what you want to hear.

"All we want is a fair care plan from the Trust, free from all this bureaucracy. Our funding is being wasted, and this is where we need a strong voice from a local support network. We can't do this as individuals."

Concluding, he appealed to Councillors and MLAs to become involved in helping stressed out carers share their experiences. For instance most parents, are unable to have a holiday, a meal or an evening out together. The bottomline, he stated, was the South West Carers Forum wanted to see the 'Equal Lives' Report implemented.