Antoinette Norris has acquired many skills in 18 years of caring for a child with profound disabilities, but lately she feels she’s added time travel to the list.
“We’re going backwards,” the mother of five says with a sigh. “Years and years ago you heard about people with disabilities but never saw them because they were hidden away from society. That’s what’s happening again.”
She’s speaking of her daughter, Demi, who has been stuck at home the past three weeks with nothing to do and none of the therapies so essential to her wellbeing.
Demi has Cohen syndrome, has very limited mobility, is non-verbal, and requires full-time care. She was attending St Michael’s Special School in Ballymun, Dublin, but she turned 18 in April and was switched over to adult services for the start of the new academic term.
When she tried to take up her place at an adult training centre, there was no transport for her, unlike when she was at school.
“The centre is a 45-minute bus journey away and 45 minutes back and I have other kids, including my youngest who is autistic, so I can’t bring Demi,” Antoinette explains.
She was offered transport by a charity running specially adapted taxis but the fee would be €95 a week. “I’m a lone parent on welfare — I’m very good at budgeting but I can’t work miracles,” she says.
Antoinette says Demi is going back in time too. “She was going to the toilet but she’s back in nappies now and she’s dribbling which is something she’d stopped. She needs her physiotherapy and her speech therapy and the stimulation of a group. I’m watching her regress week by week.”
Antoinette Norris with her daughter Demi at their home in Finglas. Demi has Cohen syndrome and they feel they’re ‘going backwards’. Picture: Arthur Carron
Antoinette and Demi were outside Government Buildings yesterday to support a small but determined group of protestors from disability groups Inclusion Ireland, the Centre for Independent Living, and the AT Network, who are calling on the Government to honour its promises to reform supports for people with disabilities.
Several of the protesters spent the previous night camping out on the footpath, ready to greet Taoiseach Enda Kenny as he arrived for yesterday morning’s Cabinet meeting.
Their aim was to point out the pain caused by years of cutbacks to respite care packages, mobility allowances, and other services, and to remind him that the programme for government promised a shift towards personal packages for people with disabilities, allowing them make their own choices about what supports they need with their own money to pay for it.
The news that €450m is to be spent upgrading nursing homes has sparked alarm. “Living in the community is the way to go but there is no money for that yet there is money for residential care,” said Ann Kennedy, 62, who has mitochondrial disease and uses a wheelchair.
“They are driving people who could be independent into institutional care. It’s scary, it’s not a normal, natural environment for someone who wants to get out in to society and enjoy life.
“We want personal packages so that we can choose when to get up, what we are going to do, how we going to get around. We’re told what hours of care we’re getting, when we’re getting it. We’re being made dependent.”
Ann shares her disability and frustrations with her twin, Margaret, and the pair are regulars at protests, donning jaunty pink hats draped in ribbons and flowers and refusing to let their wheelchairs hold them back.
“I know we’re flamboyant when you see us on protests with our hats and our placards but what this situation does is it erodes your confidence and self-esteem,” says Ann. “It makes you feel worthless.”
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