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.

Adopting Poet

About two months after I turned 18, I decided that I should get a pet kitten. I had some image in my head of a disgustingly cute, white or calico bouncing fluffy fur-ball. I even planned to name it “Nermal”. Oddly, not only could I not find this visage of cuteness, I had a hard time finding any kittens up for adoption in my area. I went to the two nearest animal shelters. I looked in the paper. Nothing. One late October afternoon I was on my way back from a visit with my mom. And on a whim, I stopped by the Humane Society in my mom’s town.

There were two completely uninteresting kittens in their own cages. Until that moment I didn’t even realize that ‘interesting’ was one of my criteria. In another much larger cage, there was an entire cat family—mom, dad, and 3 kittens. All of them black and white, with huge ears, and lots of personality.

Before I could even ask, the staff shared with me how they ended up with the black and white cat family. The two adult cats had been left while the female was still pregnant with her little brood. She had her kittens there at the shelter. Both of the adult cats were Orientals. The momma cat was a longhair, and the poppa cat was a shorthair—both very pretty. The kittens, well, they all looked like big eared wet rats.

Their former owner had originally planned to sell the kittens, but he soon found out two distressing details. First, the black and white tuxedo-style markings were not considered show quality. Second, having bred a longhair with a shorthair, the kittens could not be “registered” no matter how their markings turned out. (Oriental longhaired cats weren’t officially allowed into the club until 2 years later.)

I was speechless. It sounded so callus and stupid! But according to the staff, this wasn’t that uncommon. Still, they ran into this sort of thing more frequently with dogs; and usually not entire animal families.

They opened up the family cage, and asked me which of the drenched rats I wanted to see first. I thought I wanted a girl cat, so I introduced myself to the female kitten first. She was not impressed with me. Then I noticed that one of the boy kittens was making a very eager show of wanting to be next out of the cage. I obliged.

As soon as I picked him up, he *hugged* me! Really. One hand-like paw on each shoulder and a definite little squeeze. He had the most uncanny intelligent look in his eyes. He looked at me as if to make it very clear that he planned to leave with me. That was it. I fell in love with the little black and white drenched rat. I was ready to adopt him immediately. Right then, I looked at his alert, interesting face and I knew his name: Poet.

While I was signing the adoption papers and paying the fees, one of the ladies noticed that Poet was not quite 8 weeks old. She yelled back to the other woman, “Hey, the kittens were born on September 2nd.That’s close enough to eight weeks right?” She agreed it was.

September 2nd. Poet had been born on my 18th birthday. I knew that Poet was going to quickly become my most precious companion. He sat perfectly and patiently in the passenger’s seat as I drove us home.