Monday, February 12, 2018

Families find few options for future planning

Photo from White Coat, Black Art

By Louise Kinross

A couple of things converged on my screen this weekend about how families find, or to be more specific 
don’t find, housing and services for their adult children with intellectual disabilities.

First there was this podcast on CBC’s White Coat, Black Art, about a family whose 18-year-old daughter with severe autism is aging out of the pediatric system. “A day with Gilly, a teen with autism and developmental delay on the cusp of aging out of the system—and her parents who are expected to pick up the slack,” is how host Dr. Brian Goldman described it.

The family noted that they have signed up for Developmental Services Ontario, but that the wait list for a group home is 25 years. In the meantime, Gilly needs supervision in the home and even walking out to her school bus each morning. Her dad says that about 50 per cent of the time she refuses to get on the bus. At night, her parents take her out for four to five car rides, her favourite activity, before bed. She has limited speech. At 21 she will age out of school. Few day programs will accept a child with the kind of support needs Gilly has, said her mother Rachelle. Gilly is one of about 12,000 adults with intellectual disabilities waiting for housing and other services.

“Our fear is that there isn’t a clear plan,” her mother Rachelle said.

This family is not alone.

On Friday, I read about a U.S. study that found less than half of 388 parents of children with intellectual disabilities had made long-term plans about who will take over their child’s care if they, or another relative providing care, dies or becomes disabled. The parents ranged in age from 40 to 83, with children aged three to 68. More than 77 per cent lived with their parents or another relative.

Parents were asked whether they had completed 11 items related to their child’s long-term needs, such as identifying a successor to the current family caregiver, researching residential programs or establishing a special-needs trust.

The study, accepted for publication in the April edition of the journal Intellectual and Developmental Disabilities, found that over 12 per cent of participants had not taken any of these actions, while more than half had done only three planning activities.

Those three tended to be working on things like finding an attorney and discussing future care plans with their child and family. What they hadn’t done was take concrete steps to arrange housing or to write a letter of intent to guide future caregivers.

More than 61 per cent said the lack of residential, employment and recreational services to meet their child’s needs was a huge barrier.

“Nationally, 75 per cent of people with intellectual and developmental disabilities don’t have access to formal services,” says lead investigator Meghan Burke, a professor of special education at the University of Illinois. “It may be that many families think ‘why plan for services, when there are no services currently available?’”

Yes, that just about sums it up perfectly, from my perspective.

I wrote to Meghan to explain that even though I’ve worked at Holland Bloorview since my son was four, and I knew I was "supposed" to plan, I still don’t have critical pieces like housing figured out. And my son is almost 24 now.

With a wait list of 25 years for publicly funded housing, how can you plan, unless you have the money to purchase real estate yourself?

Meghan responded by saying that she can empathize with my situation because she has a 24-year-old brother who is on a wait list for residential services.

“I am also the parent of a child with a disability myself and am terrified for the future of my own child,” she wrote. “You are absolutely right—for future planning to occur, we need systems change. Point blank. Residential planning is certainly one, perhaps even the most, important part of future planning.”

But Meghan said there are other parts of planning that don’t depend on government services. “We looked at whether family members had discussed the future, decided on whether conservatorship or guardianship would be appropriate, developed a special-needs trust, or created a letter of intent.”

Other activities include sharing with family members a list of the child’s doctors and daily schedule, showing siblings where important documents like a trust or will are kept, or developing a support circle.

Money was a significant barrier to planning for more than 46 per cent of families, and more than seven per cent said the topic was too “emotionally loaded” for members to talk about.

When I first came to Holland Bloorview, I wrote articles about sibling issues. One of the most important things experts always said was to have a long-term plan, so siblings don’t assume care falls entirely to them when their parents die. 

But many families, like Gilly’s, and those in the U.S. study, and my own, don’t have housing pinned down. That makes it hard to talk with siblings, because there's such a huge unknown. On the other hand, we do know from research that siblings have anxiety about the future care of their brother or sister. I think these two realities put many parents between a rock and a hard place.