A surprise about institutionalization of the disabled children

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.)┬áKatie 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.┬áBut 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.

Rose Woodhouse

Elizabeth Picciuto was born and reared on Long Island, and, as was the custom for the time and place, got a PhD in philosophy. She freelances, mainly about disability, but once in a while about yeti. Mother to three children, one of whom is disabled, two of whom have brown eyes, three of whom are reasonable cute, you do not want to get her started talking about gardening.

18 Comments

  1. I wonder if your surprise is in some way informed by your own parenting attitudes. Since I know you well, I know how committed you are to delivering the very best care for your disabled son and that you have both the personal dedication and confidence in yourself to do so.

    I can easily see other parents lacking some component of the above when deciding what to do with their disabled children. Conversely, I have had patients who get care at home that has completely consumed every aspect of their parents lives, and have wondered if the quality of life for everyone would be better if the child were in an institution. I can see parents who lack your fortitude or confidence really believing that they won’t be able to deliver case as good as in an institution, and opting for placement.

    • Painful as it is to remember now, I did consider institutionalizing him once the doctor recommended it. So I can totally relate! I lacked all confidence in my ability to parent him. We thought he would be more disabled than he is (not that he’s a walk in the park, but we thought no communication whatsoever, no walking ever, blindness, etc.). Also, I hadn’t yet bonded with him. He was in the NICU for four months after he was born, and spent a good portion of that time completely unresponsive to the environment. I was never alone with him, and could never hold him unattached to various instruments. Then he came home, started smiling at everyone, and we all fell in love and lived happily ever after. Well, mostly happily.

      I do think it would be better if there was a very humane community-based institutional care option with tons of family participation. I’ve got a lot of resources to deal with him that other people don’t have. One parent of a kid with my kid’s syndrome killed her two kids and herself. Obviously, I don’t think the syndrome did it, but what if there had been such an option? It’s possible that tragedy would not have occurred. There are people who, unlike me, are not in a stable marriage, are not financially comfortable, must choose between their job and care for their kid, are really young, poorly educated, what have you.

      So anyhow, all to say, I was really surprised, but not in a judgmental way.

  2. Thanks for researching and writing this, Rose. I imagine it was painful. I’ve been kicking around the autism galaxy long enough to hear that yes, some adults and children are still institutionalized, sometimes at the urging of their home school district (in the case of children).

  3. My name is Lori, I feel compelled to reply, though I have no special needs children. I am researching institutionalization, and that is how I came across this article. I praise you in your strength and love for this child. I do have a nephew who is in a group home, but had remained at home until he was in his mid 20’s. Unfortunately, he was not being cared for as well as he should have been, by his stepmother. My brother remarried, and decided to put him in this home, but he is now flourishing, having finally even been potty trained. He is such a loving human being, and hugged everyone who walked in the house, I’m sure my brother, if he had been better educated about his sons condition, he would have been better able to handle him at home. Anyhow, I think you are a strong person for loving and caring for your son yourself.

    • Hi Lori! Thanks for stopping by! So nice to hear that your nephew is doing so well now! Some group homes can be lovely places. It really depends on the size, the funding, the training, and dedication of the staff.

      It was so tough twenty, thirty years ago. Now, if I have a question, I can google an answer, or ask a ton of moms of special needs kids on Facebook. Schools and communities are much more supportive than they were. We also know much more now about how beneficial it is to raise kids at home. Sometimes I wonder if I could have managed it back then!

    • Group homes for I/DD are not considered institutionalizing. At least not to professionals in the field, like myself. Families may view them as such and if you asked me for my personal opinion I would tell you they are mini-institutions. Group homes are, however, considered community based residential living options. In the state of Oregon a group home is between 1 and 10 people and has 24 hour awake staff.

      My favorite home support option is Supported Living. There are about half as many rules and so the person receiving services has more freedom and they are able to customize their service to fit what is important to them. Supported Living is frequently misunderstood as people living on their own, but people can actually get up 24 hous a day of support in this device element.

      • I realize that group homes are not institutions, so more to my point was that he was not being cared for with the love that rose is showing for her child. He doesn’t talk, learned to walk around age 4, and was never potty trained. It was left up to his sister to care for him and change his diapers. When he went to the group home, he learned to use the restroom, and was taught a lot. So that was actually my point. I just did not say it very well.

        • I’m glad to hear the group home was an overall positive infulence. They seem to be pretty highly regulated across the board so the real variations on quality of care provided in them comes from the staff. When the culture of the organization (not just mission, but actual culture promoted within) is to enhance the independence of the individual and facilitate the building and maintaining of relationships outside of their paid providers, you know you found a good one. If you are interested in getting more involved in your nephews services I might be able to give you a few suggestions. I work for a residential and vocational service provider and collaborate with families as often as I can.

        • He sounds sort of like my kid. I don’t expect him to walk until 5 or 6, I don’t know if he’ll talk (he understands a good amount and can make a few signs – generally pretty amazing at making his feelings known). But I will tell you this – the second he starts walking, we are potty training!

      • Some families do think a group home is tantamount to institutionalization. I don’t. Of course, that may change as he gets older. But I would be open to it, depending on his situation, our situation, etc.

        • I understand why a family might feel like a group home is institution-like; especially since they are as cl

  4. “The era of institutionalization is, in fact, not completely over. I am totally, totally surprised.”

    I said the same thing two years ago, but for totally different reasons. All of my time working in I/DD has been in Oregon. Oregon is considered progressive in the field. We closed down all institutions that were specifically around housing people with disabilities and now provide a handful of different community based living options, as well as options for living in a family home. I was naive enough to think that every state used the same practices and was suprised to find out that not only are there institutions in full swing, but some states are continuing to build new institutions! This makes me want to run around the country telling people that they are doing it all wrong. I’ve been working with this guy in New Jersey who mentioned they have seven institutions!!! Are you kidding me??!!

  5. I think a factor one would really need to consider carefully would be any other children one might have. It would depend a lot on the disability of course, but I can imagine situations where the level of care required would so drain the resources of the parent(s) that the siblings just don’t get the time and attention they also deserve. Families are different and I assume a lot of them can work these things out equitably–perhaps even to positive effect!–but others could really suffer.

    No one right answer here.

    • There are some cases when that is unquestionably true.

      But I will say this. When my disabled kid was born, I was horribly upset by it on behalf of my older son. I thought his life was made substantially worse. I no longer think that. I’ve talked to a bunch of sibs of people with special needs, and the vast majority of them say they were glad and it made them better people. They said there were times when they hated it, but overall, they were grateful and loved their sib. The one strong exception to this is a woman who must now live with her sister to care for her, whose family made no provision, and whose family never permitted discussion of her cognitive disabilities.

      Studies show that parents, sibs, and disabled kids all do better the more kids are in the family. So I’m not sure that division of resources is the issue.

      Of course, as I said in the comment above, there may be situations when it’s the best option. But home-reared kids who don’t have a degenerative condition do so drastically better that there really ought to be a very compelling reason. For example, with my kid’s syndrome, 75% of institution-reared kids died their first year of life. Of those who lived, virtually none ever walked or talked. Of home-reared kids with the syndrome, less than 10% die their first year of life, over 90% eventually walk, and 75% have some speech (often pretty limited).

  6. On whose say-so would a given child be institutionalised? Is there some process to this?

    • I never looked into it too closely. When the doc recommended institutionalization, I asked if there was some sort of process for determining that, and was just told that my kid would definitely qualify. Again, I should say he seemed worse at the time.

        • My situation involves an elderly woman with a brain tumour. She’s ambulatory but delusional. Refuses to collect SocSec or Medicare. We’re supporting her. The only way we can get the state involved is to put her out on the street, which we refuse to do for obvious reasons. It’s a big mess. Institutionalising anyone means running an imposing gauntlet of bureaucrats. I was involved in another situation, domestic violence in a refugee family. You wouldn’t believe how much trouble it took to get the mother in for a psych eval, took an arrest and a judge’s order.

Comments are closed.