So in a recent post, I mentioned in the comments that my middle son qualifies for a Katie Beckett waiver. That is, he can receive Medicaid as coverage secondary private insurance. The Katie Beckett waiver was instituted by Ronald Reagan, for the purpose of shifting the care of severely disabled dependents from institutions to their homes. People who made too much money to qualify for Medicaid yet whose medical bills were enormous could choose home care over institutional care for severely disabled dependents. (Katie Beckett died just last month – here‘s an obit.) Katie Beckett’s mother lobbied to demonstrate that supporting these children at home was win-win-win: children do far better raised at home than in an institution, many parents would prefer their kids to stay at home, and it’s much cheaper for the government to provide support for people at home than in institutions.
To qualify for the waiver, a child must be such that he or she would otherwise be institutionalized. That counterfactual always intrigued me. I would assume that it was someone who would otherwise institutionalize their kid because they absolutely could not afford to keep her at home. But that’s not the case with us. We have private insurance. It doesn’t cover everything, but it covers a lot. We use the medicaid for medical equipment only. And even if I have to schlep my son up and downstairs when he weighs 180 pounds and get a nursing degree myself, I’m not institutionalizing him. When I applied for the waiver, no one asked me what I would otherwise do. Nor did I have to prove it. We got sent to the bottom of the waiting list because we do have private insurance and he no longer needs any home visits by a nurse. But we still qualified solely on his degree of disability.
So what did it mean to say he would be otherwise institutionalized? Someone who would have been institutionalized in the 1950s? So that’s what I assumed, and it had just morphed into a public benefit for parents of disabled kids. But I decided to research it. Turns out, it really is intended to be only for people who would otherwise be forced financially to institutionalize a child. States, however, can implement it however they want. And, in practice, almost every state will grant it without actual proof that the child really would otherwise be institutionalized. (So our family gets coverage that is considered unjustified by the federal government and justified by the state. Hmmmmm.)
Most importantly, I also found out that institutionalization is not nearly as much of a relic as I thought. I decided to research how many kids with his level of disability were institutionalized these days. I expected the number to be microscopic. We were advised by one doctor to institutionalize our kid, but I thought that was a one-off. Apparently, it isn’t. There were no stats on what percentage of severely disabled kids, per se, are institutionalized. From what I could gather from here and here, in the mid-2000s, between 5 and 10% of disabled children of any severity are institutionalized. So presumably, that includes those who are, say, deaf, blind, or have mild intellectual disability – and would be very unlikely to be institutionalized. Moreover, there are far more less severely disabled kids than more severely disabled kids. Which means that kids with my kid’s level of disability are still being institutionalized at a rate that is likely quite significantly higher than 10%. The era of institutionalization is, in fact, not completely over. I am totally, totally surprised.