Nova Scotia

Mother worries son with Down syndrome will suffer with no programs

Without a day program, 20-year-old Jimmy MacNearney of East Hants, who has autism and Down syndrome, faces empty days.

The only day program option for adults with special needs nearby is at capacity

Jimmy MacNearney will be finished high school soon and his mother is worried about finding him activities during the day. (Sherri Borden-Colley/CBC)

A Nova Scotia mother is worried about what will happen to her 20-year-old son with special needs once he leaves high school in the spring.

There is no day program in East Hants where Sally MacNearney and her son, Jimmy MacNearney, live.

Jimmy has Down syndrome and autism, and functions at the level of a two to three-year-old child. He graduated from Hants East Rural High School in June 2015, but is allowed to continue classes there until he turns 21-years-old in May.

After that, MacNearney does not know what the future holds for him.

The lack of services has prompted MacNearney and a group of East Hants families to consider starting their own day program for people with special needs. They plan to meet on Tuesday.

Forced to sit at home every day

With no program available for low-functioning adults, MacNearney fears her son could become isolated in their small community of Barr Settlement.

"At school, he does have one educational assistant with him all the time and possibly two if he's out and about in crowded areas," MacNearney said.

Jimmy loves going for walks, playing on his swing, riding his bicycle and singing, she said.

"His is more of a social program, doing arts and doing music and doing gym — social outings and that sort of thing."

MacNearney does not want Jimmy to fall through the cracks and be forced to sit at home every day. If that happens, she said, he will lose the companionship of others in the special needs community.

Sally, Jimmy and Ian MacNearney in a family photo. (Sally MacNearney)

'They're full'

MacNearney applied to Corridor Community Options for Adults, which is in the only centre in East Hants that provides programs and vocational training for people living with intellectual disabilities.

But she said staff there told her there is no programming, funding or space for Jimmy and four other low-functioning adults in the area.

The closest programs for Jimmy are in Lower Sackville and Truro, but both have long wait lists, she said.

One service in East Hants

Ross Young, manager for Corridor Community Options for Adults, said they support people with disabilities across a wide spectrum. With 31 people attending the centre, they're at capacity.

"It's the only adult service centre in East Hants," Young said.

"There are all kinds of them all over the province, but in East Hants, we're the only one."

In addition to its social day program, the centre operates a thrift shop, a café and catering service and a wood products service.

Funding for travel available

Lorna MacPherson, director with the Department of Community Services disability support program, said her staff works closely with families, the school board and schools to plan next steps as students with disabilities transition out of high school.

MacPherson would not speak about MacNearney's specific situation.

But she said there may be times when people living in urban or rural communities are required to travel to attend a day program. In that situation, the department provides funding for transportation and travel expenses. 

"We do know that there are areas that are perhaps better served than other areas and there's a whole area of work going on right now with the disability supports program with the Department of Community Services around transforming our services," MacPherson said.

"And it's an action plan to help more Nova Scotians with disabilities work and attend activities and live as independently as possible in the community."

For example, recent policy changes within the department now allow families more flexibility with the funding they receive, she said. That includes paying for day activities for a disabled family member.

ABOUT THE AUTHOR

Sherri Borden Colley has been a reporter for more than 20 years. Many of the stories she writes are about social justice, race and culture, human rights and the courts. To get in touch with Sherri email sherri.borden.colley@cbc.ca