Ah... Boo. (or, One in 1,765,010)

Today when I got home from work, I opened a letter from the Genesee Intermediate School District. It was sent as a formality—to report fairly innocuous data about my son David. At first, I saw the letter only as a document that filled the (inexcusable) gaps in the assessment reports from his prior school placement. The staff at his previous school were satisfied with calling David “un-testable.” So, I was very impressed by the Elmer Knopf school psychologist’s neutral language and thoroughness.

About an hour later, I remembered a phone conversation with Shawn a few days earlier. I had sent Shawn on the journey to get a Medicaid waiver for David. It was my understanding that we needed to have a few evaluations completed by Community Mental Health, fill out some forms, wait for the papers to stop being pushed, and David’s significant medical needs would be covered. This program exists as relief for people with the most significant disabilities and their support-givers. It effectively eliminates income requirements and the perpetual re-application for Medicaid coverage, and it ensures a number of basic medical and social supports for the duration of the individual’s eligibility.

The other day I called Shawn on my way home from work to check on everything, including the waiver. He told me that the CMH case worker was hesitant in going forward with the waiver, because there was a “freeze” on future waivers. I dismissed this as sounding absurd. I called, and failed to reach, a couple of colleagues who know more about this sort of thing. And I slept, and commuted, and went to school, and went to work, and I didn’t think much about it again until today. But today, I looked into the status of the Medicaid Waiver in Michigan. (Ah…boo.)

A 30-second Google search led me to the page that confirmed there really was a waiting list in Michigan for the waiver. http://www.michigan.gov/mdch/0,1607,7-132-2941_4868_7145-14669--,00.html Currently, Michigan has allowance for 464 children to receive the waiver. And all of those places are filled, with a waiting list.

But after reading Elmer Knopf’s assessment of David’s functioning, I was certain that I had a legitimate argument for putting David at the top of the list—if not making him number 465.

The estimated total population of Michigan is 9,969,727 (www.michigan.gov, 2009). Of those near 10 million citizens, 23.9% (2,382,764) are under the age of 18, or the age range of people David would be “competing” with for the Medicaid waiver (quickfactscensus.com, 2009). Of that population, 11.82% are eligible for special education services or accommodations due to disability (www.michigan.gov/mde/, 2010). That only reduces the number of David’s competitors to 281,643. So reasonably, we might think that given the number of children with disabilities in Michigan it makes sense that the waiver program is at capacity.

But wait. David and his peers are much more interesting than all of that. (Ah… boo.)

According to the school psychologist’s report, David’s assessment indicated that he exhibits the cognitive ability of a 9 month old. David is 7 ½ . He will be 8 on November 2. The school psychologist offered another measure of impairment and comparison: “more than 4 ½ standard deviations below the norm for his peers.” So what does that mean? That means that my unique little love-bug is beyond 1 in a million.

By the Wechsler intelligence test standard, David would be among one and one-third of a child with developmental disability in Michigan who have the most significant need. (http://www.iqcomparisonsite.com/IQtable.aspx). Using the Stanford-Binet scale, the incidence of David’s level of disability would be even rarer. And yet he exists, as a pesky reminder to statisticians that the term “statistically insignificant” should never, ever apply to people. (Ah… boo.) Using the standard Bell Curve, David is an occurrence of only 1 in 1,765,010.

So in terms of eligibility for the Michigan Medicaid Waiver, David is by far the head of his class. And I intend to point this out in a citation-riddled document for the lucky person who comes to officially evaluate him.

In reality, however, when the evaluators make their judgments on David’s placement in line for the waiver, they will use a decision matrix that weights violent behavior as the most significant. David is not violent. Ever. He is big; he can get upset; he can communicate physically; but he honestly seems incapable of intentionally causing physical harm. He’s our love bug.

Wish us luck.

Ah… boo.