Charities have turned disability into a racket

As charities threatened legal action over pay restoration one mother reveals, with heartfelt and uncompromising honesty, what life is REALLY like for her Down syndrome daughter

HALF an hour after our daughter Grace was born (she’s now 25), we were told she had Down syndrome. Immediately, the future disappeared. The doctor explained that she might ‘do everything, but just a bit slower’ and that she’d be six months behind everyone else. I wanted the name of the person who’d be ahead of her. We decided we’d just bring the baby home and think about the Down’s business later.

After a few months, I phoned the medical centre near where we live in Galway about baby vaccinations. And so it began. I was told to contact the Brothers of Charity and talk to them about ‘a Down’s baby’.

We did this and a social worker visited our house. She told us all about their early intervention programme. She gave us new words, like mainstream, stimulation, integration, speech therapy, swimming, special… and on it went. We did all of this and more besides.

When Grace was four, we had a look at pre-schools. Luckily, we live in a neighbourhood where people see the similarities, not the differences. Grace was there for two years and was doing great.

The early intervention programme was not finished. That was the end of the Brothers of Charity for us.

Next we had to find a ‘big’ school that would take her. Ability West had a special school. We knew that if we took Grace out of the ordinary, mainstream school, we’d be taking her out of the neighbourhood. Grace went to the Convent of Mercy National School with the same children with whom she had been in pre-school.

She had a wonderful SNA (special needs assistant) and she was getting on very well. Next was secondary school. For this she had to be assessed by the National Psychological Services. Hours of meetings, questions, and general discouragement.

On the very last day in national school, a teacher from the Mercy Secondary contacted me to say they received no information about Grace!

GRACE was the first student with Down syndrome to attend the secondary and they were very interested in her. She had a new SNA, another terrific young woman, and a resource teacher. We were truly delighted. The school put everything in place for Grace to sit an Applied Junior Cert and there was no reason why she couldn’t do an Applied Leaving Cert. She did both and everyone was so proud of her.

What we didn’t know was that all the early integration was the road to segregation. Grace and other young people with an intellectual disability were, for all the years and effort, on the road to nowhere. After mainstream school, aged 18, there’s little or nothing.

Two years before Grace finished school, and after meeting many distressed parents, I saw the future and it wasn’t the one Martin Luther King talked about. So, I contacted the next charity, Employability West.

It was their job to try to find jobs for young people with intellectual disability. Grace saw them once a week for six weeks to learn ‘interview skills’. She wanted to work in the City Library. I foolishly thought it would be wonderful when young children visited the library in a school group, a girl like Grace could read to them.

There was a government scheme called Job Bridge but it was not open to people with intellectual disability.

With the help of a local politician – and some very hard work – I got Joan Burton to open up the scheme. Grace was interviewed by Galway County Council for the job in the library – which she got.

A job coach from Employability West would assist her for the first week, or so we thought. But after that initial week, it turned out that for health and safety reasons, Grace was not allowed to do her work without the job coach sitting beside her. This seemed to me to defeat the purpose and made me furious. Grace ended up leaving the library.

With a broken heart, I contacted Ability West and pleaded with them to take Grace into St Joseph’s Centre. She went there four mornings a week for two years. When Grace went to St Joseph’s, the programme was for three years. I took her out after two.

THIS is a three-year ‘programme’ after which the ‘service users’ graduate to another training centre, also run by Ability West, for another three years. Had she stayed, after six years of what looked like daycare, Grace would have been sent home to her parents. It felt like there was hardly a plan for the future and, for us, it felt like little was achieved.

I would not allow Grace to pass her young life in this way.

Like other charities, staff at Ability West were threatening strike for pay restoration during the week. But organisations such as the Brothers of Charity do similar work.

Then there’s the Centre for Independent Living, Enable Ireland, Inclusion Ireland (which has been going for 50 years), Down Syndrome Ireland, and many others I’m too tired to mention.

Because Grace is no longer ‘with the services’, we were contacted by the HSE. There is €11,000 ‘allocated’ for ‘Grace’s needs’, as decided by it. I can’t access this money unless it’s administered by the charities.

I have long argued that charities have turned disability into an industry. They are top-heavy with salaries. It looks like our children serve the charities, not the other way around.

Helen Keller was born deaf and blind in 1880. Her young teacher Annie Sullivan taught Helen better than the countless charities would do now.

Annie Sullivan didn’t get funding, grants, company cars and expenses.

The charities should merge into one and they would have the fund for ‘pay restoration’.

PS: I feel like Peter Finch in the movie Network when he flings open the window and screams: ‘I’m mad as hell…’ Thing is, nobody’s listening. It seems we don’t even have a window to fling open.