Aging Nova Scotia parents worried by waiting lists for children with disabilities

A mother in Nova Scotia is worried about wait lists for programs tailored to children with disabilities.
A mother in Nova Scotia is worried about wait lists for programs tailored to children with disabilities. Getty Images

Seventy-four-year-old Marg MacPhee says caring for an adult son with Asperger’s syndrome can mean moments of joy, but the time has come for the Nova Scotia government to ensure he has his own place.

The mother was one of several parents attending a government information session Tuesday night who said their worries are growing over waiting lists for housing of adults with disabilities.

MacPhee said her 43-year-old son Steven has been on a waiting list for his own home in the Halifax area for 12 years. She says she’s turned down several options offered because they were too far away or in a rundown location.

READ MORE: Millions in funding announced for NS children with Autism Spectrum Disorder

She and husband Ivan said in an interview he needs a smaller place, with some support for meals – and she’d like to still have close contact with a son who she says is compassionate and caring towards her.

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“The province needs to start working on it,” she said in an interview.

“We just want something in place for him before we go.”

Krystal Brown, who also attended the meeting, said her 20-year-old son Chase – who has cerebral palsy – has been placed on the provincial waiting list for support and housing as well.

“They told me if I wanted him to get him in 10 or 15 years, I’d better get him on a list now,” she said.

“I don’t want to be 80 years old and still looking after my son.”

Brown says she’d like to have her son near her home, where she can still have input in his life and visit frequently.

The province recently announced in the 2016-17 budget it will spend $3 million for new initiatives in its disability support program.

The money is to support the transition of 25 people from larger facilities to smaller homes in communities and to increase the capacity of daytime programs for adults with disabilities.

But Brown says that does little to increase the opportunities for a mother like herself, living in rural Nova Scotia and providing full-time care to an adult.

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Province struggling to keep up

Lynn Hartwell, the deputy minister of Community Services, acknowledged during the meeting the province is struggling to keep up with the needs of families who are caring for adult children with intellectual and physical disabilities in their own houses.

There are 5,300 people supported by her department, with close to 3,000 in family support programs.

Hartwell says there is a wait list of 1,100 people who are looking to either begin receiving support from the department or transfer into a new level of housing and care.

She said in an interview there are a growing number of baby boomer parents likely to soon add their children to that waiting list as they grow too old to continue providing care.

“We have a whole lot of baby boomers starting to age. They’re not in a position to care for family members who are no longer living in the family home,” she said.

Dave Kent, the president of the advocacy group People First Nova Scotia, said the province remains years behind other Canadian jurisdictions in the transitions to community-based homes and support, with more than 600 people still living in the larger facilities around the province.

The number of people in family homes who want to move into their own apartment is also too large, he said.

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“The government isn’t doing enough. I had to wait eight years for independent living. Now I live alone with a worker coming six hours a week,” he said.

In a report issued Wednesday, the province’s auditor general criticized the department for failing to evaluate whether funding levels are sufficient to sustain its programs.

“Community Services needs to understand the potential future demand in order to ensure the programs offered will be sustainable,” says the report.

The department says in its response to the auditor that it plans to have analyzed its future needs by September 2018.