We don't agree on what constitutes a disability, services are fragmented, and children in poverty might be missing out. The latest issue of The Future of Children, from Princeton and the Brookings Institution, is on children with disabilities. You can read the whole issue
here. In their introduction, Janet M. Currie and Robert Kahn list five themes across the articles:
- "It is remarkably difficulty to point to a consensus definition of disability." The one Halfon, Lrson, Newacheck, and Houtrow end up with is "an environmentally contextualized health-related limitation in a child's existing or emergent capacity to perform developmentally appropriate activities and participate, as desired, in society." Followers of this blog and the associated research and theory will notice (a) an emphasis on the role of the environment, which of course includes the humans in the child's ecology; (b) the notion that disability occurs when there is a limitation, not just a diagnosis (although I think "health-related" is a nod to the diagnosis); (c) the concept of goodness of fit between the demands of an activity and the abilities and interests of the child; and (d) the attention to participation, which is consistent with the ICF-CY and is closely related to engagement.
- "The huge increase in recent years in the number of children who are considered to have a disability." And autism isn't even mentioned in this introductory article. "Researchers' efforts to track trends in disability and understand the meaning of the recent increase in numbers have been seriously complicated by changes over time in definitions of disability, in screening for disability, in services for disability, and in the extent to which particular conditions are considered to be actually disabling."
- "The growing role of mental health issues in childhood disability." "Mental health disorders in childhood generally have larger impacts than childhood physical health problems in terms of adult health, years of schooling, participation in the labor force, marital status, and family income." In early intervention, many of us old-timers have perceived an increase in problems of self-regulation, attention, and engagement that become manifested as challenging behaviors.
- "Children live in families." Ever heard this before? The factors considered in this journal issue are (a) "Childhood disability poses major costs for families," (b) "the way that children are able to function within their families should be considered...,"
and (c) families often serve "as the only effective coordinators of care." We know about the loss of service coordination at age 3 and the challenges even before age 3. Much of the Future of Children emphasis is on economics, including public or private insurance, so the cost to families is discussed in some detail. In early intervention, we should think about "
medical costs, indirect costs to families in terms of lost work time (especially for mothers), and costs in terms of losses to the child's future productivity. (They do not take into account the costs paid by private insurance or the cost of decreased well-being of families.)" From the health perspective that these articles are written, they tend to call service coordination "advocacy."
- "The fragmentation of disability services." "A
disproportionate share of services for the disabled is still targeted at physical disabilities. Likewise, systems set up to deal with medical problems such as clinics for children with disabilities, or public insurance programs, are not coordinated with services at schools." Or with services in the community, such as homes or child care. The transition challenges we're familiar with show up in discussion of fragmentation even within the educational system: "
For example, children receiving services for disabilities funded by special education before entering formal schooling are not automatically connected to special education services once in school." How services are paid for adds to the fragmentation, with children going in and out of insurance coverage. We know that in early intervention the fee-for-service approach to the therapies, using vendor therapists, has led to all sorts of problems with locations of services, how therapists think they have to work to get reimbursed, and the fact that multiple providers or agencies can be on one family's IFSP and rarely talk to each other.
The issue covers children of all ages, but it's helpful to have these economists and other experts, not necessarily from our own fields of early intervention or even special education, looking at the state of children with disabilities in America. They have suggestions for policy change. I am particularly interested in figuring out what individual early interventionists, program managers, and state administrators can do to inch us towards common sense and away from further problems. If you have ideas, please comment.
