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.
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