Parents of children with special needs fear losing more supports

PARENTS of children with special needs are worn out from “begging and battling” for services, according to the manager of a Barefield-based children’s charity.
Speaking at a recent meeting about health cuts at the West County Hotel, Clare Crusaders clinic manager, Ann Norton revealed special needs hours for children with disabilities have been cut over the last two years.
With over 690 children with special needs in Clare, Ms Norton stressed a lot of people don’t realise the proposed cutbacks in health expenditure don’t just affect elderly people and carers, it also affects young children who have been diagnosed with a disability and teenagers.

She explained the lack of Government funding is adversely affecting agencies such as Enable Ireland in Ennis, who were informing patients they have a waiting list for respite and other services.

She also claimed the parents of children with special needs are scared to talk as they are afraid the small level of supports they are already receiving could be taken away.

“Parents are scared to talk about what is happening. There is so little services and support for children with special needs and their families.

“If you are told that your child has a disability, it is a terrible blow. No one comes to your house and gives you support. Parents are left begging and fighting for everything.

“By the time your child become a teenager, you are worn out from begging and fighting for services that should be an entitlement. Parents are lucky if they can get one or two hours’ respite.

“I know parents who are waiting for their child to be assessed. They are scared if they talk they will lose the one or two hours they might have.

“I have a 15-year-old daughter with a disability and I have been fighting for every service for her since she was born,” she recalled.

One of the major difficulties facing parents of children with special needs, she said, is the fact they are in a minority.

Unlike the people power demonstrated by pensioners when they forced former Health Minister Mary Harney to row back on cuts to medical card holders a few years ago, she explained parents don’t have the same numbers when it comes to campaigning.

She pointed out parents do not have the time to go to Dublin to participate in national protests and even if they could put the necessary arrangements in place to  have their children looked after, they would be exhausted by the time they got to the capital.

She warned a lot of parents are not physically able to fight any more cuts from the Department of Education or the Health Service Executive (HSE).

“Parents are getting so little already. We are looking for one hour to clear our heads and do a bit of shopping, which would be considered a break. A lot of families have been affected by cuts and children shouldn’t be forgotten in any campaign,” she said.

The Clare Crusaders’ clinic in Barefield provides therapy for more than 190 special needs children with Autistic Spectrum Disorder, Cerebral Palsy, Down syndrome and other conditions.

Run on a voluntary basis, services are free of charge and include speech therapy, occupational therapy, special education, physiotherapy and reflexology.

Clare Crusaders does not receive Government funding and relies on the fundraising and donations to generate the €250,000 required each year to maintain its existing services. Its five-year anniversary is due later this month.

The recent meeting was organised by Independent Ennis Town Councillor, Paul O’Shea, who pledged to organise another public meeting and expressed confidence it would attract a much larger attendance once it is better publicised.

Councillor O’Shea, who resigned from the Labour Party over proposed cutbacks in personal assistants, which were later withdrawn by Health Minister James Reilly, was encouraged by the proposals for a new campaign against the health cuts.

Dr Billy O’Connell suggested a clear agenda be drawn up for the next meeting to focus on what the group want to achieve and he was supported by Ann Marie Flanagan, who briefed the meeting on the successful campaign mounted by people with disabilities who protested against the threatened reduction in personal assistant hours.

Fine Gael Councillor Tony Mulqueen and former Ennis Mayor, Councillor Michael Guilfoyle were the only two Ennis-based councillors who attended the meeting.

The only other three public representatives were Deputy Timmy Dooley, Councillor Gerry Flynn and former Mayor of Clare, Councillor Christy Curtin.

Councillor Michael Guilfoyle expressed his disappointment with the small attendance at the meeting and felt there should be 1,000 parents present to protest about health cuts.

The Ennis councillor complimented Ms Norton and the charity for the work it did for children with special needs.