Tuesday, March 22, 2011

Transition update and links

Ben went to see a pediatric dentist at our children's hospital because he needs work done under general anesthetic (teeth extracted, cavities filled and teeth cleaned).

He's turning 17 this weekend, and after setting the surgery date in April, the dentist was quick to point out to my husband that "we won't be seeing him again after that."

It seemed a little premature, since he won't turn 18 for a whole year. That's when he's no longer eligible for pediatric services. The generally comprehensive, one-stop services we've come to rely upon will evaporate. Parents and youth with disabilities have likened it to falling off a shelf.

Over a decade ago, a major Holland Bloorview study showed a disturbing transition into adulthood that puts youth with physical disabilities at greater risk of developing secondary health conditions. After high school, the study found teens with disabilities were unable to get a job or continue their education, became isolated and sedentary, and couldn't find a doctor who understood their disability.

The LIFEspan clinic at Toronto Rehab was created to smooth the medical side of this transition. It gives young adults with disabilities a single point of access to comprehensive services from a nurse practitioner, a physiatrist, occupational, physical and speech therapists and a social worker. Unlike the "in and out" model of acute-care, the LIFEspan clinic recognizes that youth with childhood disabilities will need specialized, ongoing care throughout life.

But right now services at the clinic, developed by Toronto Rehab and Holland Bloorview, are limited to youth with cerebral palsy and aquired brain injury.

What was your experience like moving from children's rehab to adult services?

Here are some interesting links.

NJ to propose $10,000 annual stipend for families taking care of adults with developmental disabilities.

Paper cuts.

And you may remember the Gort family, who have two children with disabilities. Mother Gina went on a 10-day retreat on her own, as a form of respite. Now her husband, Tim, is taking his own respite, hiking to the top of a mountain at Great Smokies National Park. This family is setting the standard, I think, for what all parents of children with disabilities need, but struggle to get.

I can't wait to hear Tim post about his experiences! Louise


I think that some of the dental services at Bloorview go up until the age of, I think, 21? I thought I read it somewhere, unless that has changed.

My experience of transition was generally positive, but to be honest, I felt like I was getting “kicked out” rather than graduating as they like to call it, initially. After a while, you become very comfortable in the paediatric setting, so it’s hard to officially leave something that has become so familiar. Some of the services I receive at Bloorview go up until the first year after you leave high school, and up to the age of 25 in the case of the Family Support Services on the Brain Injury Rehab Team at Bloorview, but I am really thankful for services such as the LIFEspan program, and I hope that they extend their services to other youth and young adults from Bloorview in the near future. At the LIFEspan clinic they try to create a bridge to adult services, and there are some staff who are cross-appointed at both Bloorview and TRI which makes you feel more comfortable because you see familiar faces. It’s also nice to have a place to go if you have new concerns or goals to work towards as you go through life. I also wish they had a similar program after being discharged from SickKids. After I turned 18, I was followed at several different hospitals at different clinics and the feel isn’t the same or as constant.

Happy Early Birthday to Ben! :)

well Louise, as you know, our peds experience has been a little rocky. this made me fear the transition to adult care, but I have come to believe the core issue is getting a team you can work with and who care about your child.
I hope that these coordinated services such as LifeSpan are extended to encompass adults with developmental disabilities.