Mom of severely autistic man loses supports as he turns 19

A central Newfoundland woman fears she will not be able to care much longer for her severely disabled son.
Charmaine Noble is fighting for more support for her severely disabled son, Cody Boone. (CBC )

A central Newfoundland woman fears she will not be able to care much longer for her severely disabled son, now that he has turned 19 and she is no longer eligible for the supports she received during his childhood.

Charmaine Noble's son Cody Boone has cerebral palsy and a severe kind of autism, and is also epileptic. He must be fed and — because he must wear diapers — be changed every few hours.

Cody Boone has injured himself, as well as his mother. (CBC)

Noble, who lives with her son in Grand Falls-Windsor, said there is a gap in services now that her son is considered an adult.

"The government is not giving parents like myself choices — 'This is what we're going to give you, or you give him up,'" said Noble, who says putting Cody into a foster home is not appropriate because of his behavioural issues.

"That's not a choice," she said.  

Cody is visually impaired, and needs a wheelchair to be mobile.

'Absolutely outrageous'

Noble said she cannot accept advice that she quit her job and thus become dependent on government for aid.

"Social workers have said to me, 'You're better off not working.' That, to me, is absolutely outrageous," she said in an interview.

Noble said caring for her son is a challenge, as his moods can change in an instant. He has caused injuries to himself, and to his mother.

"I've been punched in the face. Two years ago, he gave me a concussion. I've been bitten," she said.

Noble said she has brought her concerns forward, but no one seems to be listening. She said some solutions, such as hospitalizing patients like Cody, can be much more expensive than giving supports to family so that care can be given at home.

She told CBC News that she is deeply worried about her son and how much longer she can look after him on her own.

"Now, here's this child, with all these diagnoses, that's not going to change," she said. "So why at this point in my life do I got to fight for all the same things now, as when he was a child?"

She said services to families should be based on need, not finance.