The ethics of institutional care for low-functioning children

My seven-week-old son, regular readers might recall, was born with a rare genetic disorder called Cri du Chat, or 5p- syndrome. Given the size of his particular chromosomal deletion, his disorder will put him on the low-functioning side of mental retardation and psychomotor development. He will have serious medical issues, and requires a g-tube. There's a chance he'll never walk or talk, and if he does talk, he will likely not get past a vocabulary of a few hundred words and two- to three- word sentences. He will likely have behavior problems similar to those seen in autism, such as self-injury and sensory oversensitivity (on the plus side, he will not have many of the social deficits associated with autism -- people with Cri du Chat form attachments to people, are affectionate, and enjoy socializing). He will never be able to live on his own. To make clear his situation, his best case scenario is nowhere near as good as the best case scenario of a Down syndrome patient.

A neonatologist in charge of his case suggested to us that we might be better off never having our son at home. He suggested that if our son had Down syndrome, where the best case sceanrio is quite high-functioning, he would definitely suggest we rear him at home. But since there's less we can do to improve our son's functioning, institutionalization might be better.

I've been poking around a bit, and I've come to see how unusual it is for a doctor to suggest such a course of action nowadays. Indeed, doctors are urged not even to express pity or sorrow in giving a diagnosis of Down syndrome (more on that in a future post).

In the Bad Old Days, people with intellectual disabilities of widely varying degrees were all regularly put in institutions. The institutions were not much more than warehouses. This brought a very welcome backlash against the automatic institutionalization of children, and an improvement of such institutions. The data seem reasonably clear that people with mental retardation do better when reared at home.

However, I do wonder if the backlash against institutionalization has gone too far. It is better for the developmentally disabled child to be reared at home, yes. That is a crucial ethical consideration. However, that may not be what is best for the family. Some families come together and report being the better for having reared such a child. Many, however, do not. In fact, the majority of parents of disabled children experience greater anxiety and depression. It is a huge financial stress. It is no accident that on the "key resources" page of the American support group for 5p- syndrome, there is a link to a suicide prevention hotline. An excellent and well-sourced article (albeit from 1998) about the problems facing families with children with intellectual disabilities can be found here.

It has been suggested to me by disability advocates that what makes the difference is the attitude the family brings to the situation. This does not seem to be accurate - the condition of the child also matters. The more low-functioning the child, the greater the risk of physical and mental health problems for the parent.

Every disability advocate and genetics counselor I have yet talked to has urged rearing at home. Institutionalization has become anathema. This could be because they have more familiarity with the situation. Or it could be because they are thinking in terms of the interests of the disabled person (as they should be). But that may be precluding thinking in terms of the balancing of interests of everyone involved. Interestingly, every philosopher I've talked to has suggested rearing away from home (assuming an institution with excellent care and therapy services, and continued parental involvement). This could be because they do not know what it is like to raise such a child. Or because they are used to thinking about moral dilemmas and the balancing of interests.

Let me be clear that we have not yet decided what to do. My son is still not home for medical reasons.

More government support for in-home care would obviously be helpful. But I also think that the possibility of institutionalization should not be quite as stigmatized as it is. A family who rears such a child at home is viewed as being more moral than one who does not. But it's not at all clear that that is correct way to view things. While it is in the child's interest to be raised at home, it may well not be in the parents' interests. And it is not immediately clear that the child's interest should trump the parents' interests. Whether looked at in terms of a weighing of harms and benefits, or in terms of each party's rights, it is simply not clear what ought to be done, morally speaking. Parents are entitled to consider their own interests and the interests of siblings, too. It depends upon the specifics of the case, and even then, there may be no clear answer.

In an ideal world, children with the potential for higher function should be reared at home with good support services. People with lower-functioning children should have the option, with no moral stigmatization, to place their child in an institutional setting with excellent therapy services and continued family involvement.


  1. Since I'm the gadfly, and the Devil pays me a high retainer, I'm going to venture an analogy here that may be distressing (it is personally distressing to me, but I want to see where this goes when bright people toss it around).

    Just how different is a child with 5p syndrome than granny at 95 with declining mental functions? The future potential for both are severely circumscribed. Would not the arguments for supplying medical care apply to both granny and a 5p child? Should either one receive excellent therapy services at public expense, seeing as society needs to bend the cost curve downward? IOW, should we as humans value the impared elderly and impared children the same?

  2. Elizabeth, In an ideal world children would not be born with such a devastating illness. I am at a loss for words after reading your post. I offer you this: I will say a prayer that whatever choice you make, will bring peace of mind to you and your family. God always listens to my prayers as I don't bother him very often.

  3. Elizabeth,

    You, your family, and your new son have been in my prayers.

    Your comments make perfect sense. Since each child and each family is unique, a "play it by ear" approach seems to be the most compassionate and the most practical. I am confident that you and your husband will make a wise decision regarding your baby's future living situation.

    God bless you,


  4. Thanks so much for the kind words and prayers. I really appreciate it. One of the positive things that has come out of this is that experiencing greater generosity of spirit than I believed people possessed.

    I'm also blessed, unlike many people with disabled children, with an amazing husband, an amazing older son who I trust to handle the difficulties this may put in his path, and an amazing job that I love.

    And my littlest guy just started smiling for the first time.

    And all I can say is, whatever decision we make, we will at least have given very serious consideration to all the moral and emotional issues involved.

  5. Wow. I'm at a loss for words. I cannot imagine how difficult this decision must be; how poignant every day must be.

    How lucky your whole family is that you are willing to consider every side, knowing that no choice is perfectly ideal, and that any decision will be tough. Based on your willingness to look at all sides and think hard with head, heart, and gut, of *course* your decision will be moral by definition.

    I don't know what to wish you, because wishing you an easy decision is impossible. I'm glad you got that smile.

  6. Naptime, you have no idea how awesome that smile was.

    Gadfly, a few points:

    1) the question you ask is not a simple one to answer, and comes up a lot in various intro classes that Ive taught. Most people do have an instinct that a child's life is more worth preserving than an elderly person's. My guess is that since most people's intuition is that continued life is a good, even for very impaired people, children can expect more of this good than can a 95-year old. So more good is preserved by helping a child. A pretty utilitarian intuition. A Kantian would have to say the lives are incomparably valuable.

    that said,

    2) I don't see why this is the first place we'd look to cut costs, and we need not pit the interests of the young and old against each other.


    3) This seems to me to be the absolute least objectionable situation for a government aid to its citizens that there is, and seems as if it should be the most palatable to conservatives. You have a situation where there is absolutely no fault on the part of the recipient. One is not being lazy or shirking work. One merely had a child. In many cases, a parent had the option to abort because they knew about the condition prenatally, but decided against it for, I think, admirable moral reasons (not so in my case - we found out after he was born). So the argument that a government handout reinforces a negative behavior, as people argue against welfare, is not applicable in this case.

    My son has been in the NICU for 51 days now. I would not be at all shocked to learn that his medical costs are approaching 7 figures. He can expect to be hospitalized in a less intensive setting for months to come and will require lifelong medical and therapeutic interventions. My insurance will run out at some point, or we might change jobs and be denied coverage for a pre-existing condition. We would have to declare bankruptcy.

    The costs are simply too great for even extremely wealthy families to bear. The government refusing to help would lead, most likely, to many many more abortions, and many abandoned, neglected, and abused children. Since one is not rewarding negative behavior by helping out, shouldn't conservatives get behind government help for families in these situations?

  7. Regarding 1), most people regard a child's life as more valuable is evolutionary conditioning; children spread genes in the future, the elderly have finished spreading genes. A utilitarian view might value both lives similarly.

    2), we'll always pit the young against the elderly in a system with finite resources. And it may not be the first place we'd look, but we will look in time.

    3) conservatives aren't being asked for their views on healthcare; conservatives are being told to STFU, or, depending on the President's poll results, to pick up a mop and STFU. The President says we'll have a "difficult democratic conversation", and if he's as straightforward about that as he was about his commitment to put heathcare negotiations on C-SPAN... well, I'm just wondering how that conversation will play out since it doesn't bend the cost curve downward.

    For my part, as a conservative, I'd say we as a country should help out in such extraordinary situations. No question.