Too disabled? Not disabled enough?

It bothers me when criteria for services for kids with disabilities is so restrictive.

Recently we were referred to the local agency providing service for youth with intellectual disabilities. We wanted a consultation with a behaviour management person to see if we could reduce Ben's tendency to pick at scabs when anxious.

I was asked to send a copy of Ben's most recent psychological report. I was surprised when the intake person called back to say that they wanted to look at previous reports because Ben's scores might be too high to be eligible for their service.

The intake person said the agency only served youth with moderate to severe intellectual disabilities that place them below the 1st percentile. However, among the disability community, this organization is known as serving youth with intellectual disabilities period. When I asked my colleagues if they knew this provider only served a segment of this population, they did not.

I didn't have previous reports handy, so I had to contact the psychologist and sign a release consent to get copies. If I didn't work at Holland Bloorview, I would have had to make a trip to pick them up. Tomorrow my husband will take them into work to fax them.

Parents don't have time to play these games. My son requires a service and was referred to this agency by his developmental pediatrician.

It's amazing how many programs are closed to youth because they are either "too disabled" or not "disabled enough."

I guess we will wait while the agency's psychologist pores over these lengthy reports to see if he or she can find a way to exclude my son.