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Tagged: Special Education

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Special Kids, Special Parents, Special Education

My article Special Kids, Special Parents, Special Education will appear in the Michigan Journal of Law Reform early next year.  Here’s the abstract.  Next week, I’ll blog about why my proposal requiring schools (ie, a bureaucratic organization) to announce and commit to rules about matters that affect members of the public is such a controversial idea.

Many parents are raising children whose mental, physical, cognitive, emotional, or developmental issues diminish their capacity to be educated in the same ways as other children. Over six million of these children receive special education services under mandates of the Individuals with Disabilities Education Act, called the IDEA. Once largely excluded from public education, these children are now entitled to a “free appropriate public education” or FAPE. In this article, I argue that the promise of the IDEA cannot be realized unless more attention is paid to the child’s parents. Under the IDEA, as in life, the intermediary between the child and the educational system is the child’s parent. The law appears to empower parents to participate in the planning, execution and revision of the child’s individual educational plan. The experience of parents, however, is not often empowering, to the detriment of both child and parent. Instead, many parents confront school systems that do not support their competence or conserve their resources.

I propose three significant reforms to the special education system that, I argue, better serve the needs of parents while improving the chances that children in need of special education will receive it. The three reforms are: 1) requiring schools to help parents be in touch with each other, 2) requiring school systems to commit to common special educational plans through a public process, and 3) adopting universal design pedagogies in general education when practicable. While the most expensive of the three proposals is the preference universal design pedagogies, the most controversial is requiring school systems to commit to common special educational plans for similarly-situated children. If the proposal were adopted, every child with the same problem would be provided with the same educational plan. The individualized plan now mandated would be provided only where a child’s situation is an uncommon one.

None of the proposed reforms is cost-free. I conclude by demonstrating that the costs of parent-oriented reforms are justified for reasons of pragmatism, to comply with congressional expectations, and to achieve social justice for parents with special needs children as compared with other parents and with each other.

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Special Kids, Special Parents

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.