Tuesday, July 19, 2011

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.

Reactions:

5 comments:

It reminds me of the "slot limits" imposed on fishing: the particular species of fish must not be within a determined range of length, or it must be released. But the rules do change, so a fisherman has to be current. "Beginning Dec. 1, Lake of the Woods anglers will be subject to an eight-fish aggregate limit, of which only four can be walleye. In addition, all walleye and sauger from 19.5 inches to 28 inches must be immediately released, and anglers can keep only one walleye or sauger over 28 inches. Winter anglers in the Rainy River will be subject to the same slot limitations; however, a six-fish aggregate limit will be in place on the river." At least there is a purpose in keeping the fish population going. With disability services, it is harder to fathom. We are not livestock. Somehow, I think parents should be given more respect for knowing what it is that their child needs, and real help in getting there.

I sooo relate to this. I've been running in circles since I saw you last week. Everyone means to help, but ultimately I would have saved a lot of time if i took care of things myself.
Lisa

Ah, yes. I just spent nearly eighteen months on the fine line between "moderately" and "severely" -- it took an advocate, an attorney, a judge and boatloads of time and paper to make the decision.

Sigh.

Aw yes, welcome to the downside of intergrading a children's hospital into the mainstream. A part of me misses the good old days, when a doctor or therapist could simply use their own judgement to bend the rules. They could take their grievance to their superior, plead their case, and it would be decided by a board member. Now, these same hospitals have obscene amounts of money, but due to red-tape, the wrong people are making the decisions.

Does anyone see this disconnect?

Matt Kamaratakis

Yes, there is so much restriction it's absurd at times!

For example, to qualify for special ed services for a learning disability (at least here in the US), a child's performance and his IQ must be world's apart. Why does that matter? If a child needs help, a child needs help. Period. Instead, we wait to serve them until their performance plummets so far there is little chance for them to catch back up. It's ridiculous!

And heaven help the child with mild cognitive delays, because they probably won't ever have enough discrepency to qualify. But that doesn't make their need for help disappear.

At times like these, it can actually be a blessing to have severe issues.