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.