‘They did not think this through’

THE Government may have taken just one day to back down on plans to cut disability benefits for young people but it will take a lot longer to repair the anger and mistrust the budget blunder has caused.

“It’s maddens us so much,” says Pauline Molloy, who has had to battle for every support and service her son Shane has received over the past 18 years.

“It shows us that they don’t understand what people are going through or the damage that one bad decision can make to people’s lives. We thought that things were improving in terms of our situation being understood. But this just shows you — they don’t understand at all.”

Shane, from Headford, Co Galway, has cerebral palsy, epilepsy and an intellectual disability. He is wheelchair bound, has limited use of his hands and, though his mother dearly wishes it were otherwise, has no prospects of ever getting a job.

So to propose putting him in the same category as an ordinary jobseeker as the budget set out was, as far as Pauline is concerned, as mind-boggling as it was insulting.

“I can not understand how they can compare an 18-year-old with severe intellectual and physical disability with a person who is a jobseeker. What kind of thinking was in that? They did not think this through at all.”

The first of the changes proposed was that teenagers would no longer be able to claim disability allowance at the age of 16 but would have to wait until they were 18, with their parents continuing to receive the domiciliary care allowance for those two years.

At current rates, the monthly domiciliary care allowance is €309 while the weekly disability allowance of €188 works out at €752 per month — a considerable difference.

But the budget also proposed reducing the disability allowance for new claimants to just €100 per week for 18-21-year-olds and to €144 per week for 22-24-year-olds — the same rate jobseekers receive — at precisely the same time as they legally become adults and the costs of their care increases.

“We have to pay for day services and respite care and that’s where your disability payment comes in. Where do you get the money for these services otherwise? People are losing jobs and it just becomes impossible if they don’t have some support,” says Pauline.

“Those services become way more costly when a person comes to the age of 18,” she adds, and yet there is inherent danger in trying to reduce them.

“Activities are very important to young people with disabilities — they have swimming, yoga, going out for lunch, and other activities and outings like that.

“Shane found it very hard to cope with being in a crowd but with all the work they have put in with him at his service, he began to cope with all of that. To cut back on that, there would be a fear of him regressing.

“It’s also the case for many people with disabilities that if their activities are cut and their routine is changed, they can get frustrated and become very difficult to cope with at home.

“If a young adult becomes too difficult to care for at home, you may have to consider full-residential care. Where is the saving to the state in that?”

Medical costs are another big worry for people caring for a loved one with a disability and by moving the age of eligibility for the disability allowance to 18, many young people would not be entitled to a medical card in their own right for a further two years.

“With medication and going to doctors, some people have huge costs. They have to have oxygen in the house, nebulisers, suction equipment — it’s all money.”

Shane moved on to the disability allowance two years ago so as an existing claimant, the proposed budget changes would not have applied to him. However, Pauline feels for the many parents she has come to know over the years who have special needs children only now coming into their mid-teens.

Shane is in transition to adult services after a period in limbo and the family knows too well the difficulty of securing appropriate continuing care services for a young person like him without having to worry about cuts.

“We have to fight so hard for everything. Parents are worn out. I would hope what was in the budget would not go ahead in any form but it’s not clear. It’s just not acceptable if it does go ahead. There will be an awful lot of very unhappy people out there.”

Picture:

Pauline Molloy and her son Shane. Pauline says the Government does not understand their situation.