First, many thanks to my exceptional and delightful colleague, Danny Citron, for inviting me to blog on Concurring Opinions. My blogging goal is to get you to focus on how law and policy could attend to the needs of family caregivers of special needs children. “Four in ten adults in the U.S. are caring for an adult or child with significant health issues,” according to a new Pew Research Center study. One would think that this large and growing population of family caregivers would command some attention. If they refused to do the job, after all, millions of frail elderly people, permanently-disabled veterans, and chronically-ill and disabled children could be left with nobody to meet their physical, emotional or medical needs. Social welfare organizations and institutions would be overrun, and social provision expenditures would skyrocket.
Refusing to do the job is not an option for many family caregivers, of course, for thousands of reasons, including love, duty and generosity of spirit. But many pay a price in terms of physical health, social isolation, and economic security. In my work about families raising children with special needs, I argue that we need to find ways to spread the costs so that they do not continue to fall almost exclusively on family members who step up.
Here are three examples of law and policy being blind (or at least astigmatic) to the impact of care-giving on these parents. First, when a child’s parents divorce or separate, family law entitles the parent who lives with the child to child support and, in some unusual situations, alimony. Child support is calculated on the basis of the child’s needs, and alimony is determined based on what the payee needs. Both assume that, ordinarily, both of the child’s parents will be economically productive. Where the parent’s special care-giving responsibilities interfere with that parent earning a living, however, child support and alimony are not usually adjusted–there’s no “chalimony.” Second, the public benefits system picks up very little of slack for parents when special care-giving responsibilities interfere with the parent’s earning capacity. Worse yet, since the mid-1990s, states became subject to increasingly stringent requirements in federal law about tying public benefits to the efforts of recipients to get and hold employment. A different route is not unimaginable: in 2009, a stipend was enacted for family caregivers of veterans left permanently disabled during their service in recent wars. Nothing similar, however, exists for parents. Third, if a child’s special needs affect his or her ability to benefit from school, federal law has guaranteed since the mid-1970s that the child will nonetheless be provided with a “free and appropriate public education.” The statute is not blind to the child’s caregivers; in fact, it gives parents specific rights in terms of participating in planning the child’s educational program. What it does not do, however, is make sure that parents can exercise their rights in ways that make sense if their lives are over-stressed because they are caring for special needs children.
As my work continues, I’m looking for additional examples of law and policy that attend to the needs of family caregivers for special needs children, and to those that don’t. If you can suggest a new avenue of research, please let me know.