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Author: Karen Czapanskiy

4

Special Education v. Democracy

Last week, I promised to say a little more about why it is controversial to suggest that school systems make public and commit to educational plans for groups of students with special needs. For those of you who have taken administrative law and who don’t spend time in the special education system, it must seem heretical to suggest that public agencies like school systems might not have a duty to reveal policies that affect a member of the public and to commit to following the same policies when similar cases arise. Indeed, both of those principles are enshrined in, respectively, the Freedom of Information Act and the Administrative Procedure Act at the federal level and in similar statutes in most states. The principles make great sense in terms of democratic ideals which demand that unelected administrators must be accountable and that accountability requires both transparency and a commitment to equal treatment.

In the arena of special education, however, there are a couple of countervailing principles. The first is the idea that every child is different from every other child. So every child in need of special education should have a unique plan developed specifically for that child. The second is privacy. Since the need for special education can be stigmatizing, each child’s plan should be developed in a way that does not expose the child and the child’s condition to public view.

Preferring privacy and individualized treatment to the exclusion of certain democratic values may have made more sense when special education was first being addressed in federal law in the 1970s. Today, however, I think it’s time to try to balance the priorities differently. Schools have learned a lot about special education, and most no longer formulate a unique plan for each student. Pretty much every 12-year-old with ADHD will be offered the same services as every other 12-year-old with ADHD, as I learned when my son had problems in middle school.

As it turned out, the school system’s usual plan probably would have worked well enough for him, and probably would have worked for most kids in a similar situation. But I had no way of knowing what the usual plan was, so I had no way to evaluate it. Neither did any other parent, expert or others interested in education.  Further, the school system didn’t have to commit to treating my son the same as other similar kids. As a result, schools systems can — and do — adjust their usual plans for reasons that have nothing to do with the child. For example, if I had threatened to litigate, studies demonstrate, my son probably would have been offered more services. If the school system didn’t see me as a litigation threat, he may have gotten fewer.

My proposal is that school systems identify publicly whatever special education plans they think are appropriate for the kinds of situations that arise most of the time, just as they do when they address aspects of the general education curriculum. For example, when middle-school students with ADHD experience problems doing their homework, the plan will include a method for giving parents information about homework assignments other than looking at the child’s own notes. When a 4-year-old on the autism spectrum has communication problems, the plan will include 20 hours a week of ABA therapy. Once the plans have been identified and the public has had a chance to persuade the school system to do things differently, the school system would be required to provide the approved plan to every child that fits the description – no more and no less.

My proposal supports maintaining important privacy values of the special education system in the sense that no individual child’s situation is revealed in the process that I’ve proposed. Further, the values of individualization are preserved in the sense that a child who does not meet the description should not be served by a plan designed for children with other problems. At the same time, my proposal also advances democratic values that are disserved in the current system, including, most importantly, transparency and equal treatment.

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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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Diabetic Kids, All Kids, and School Nurses

Much to the relief of many parents whose children have diabetes, the California Supreme Court ruled recently in American Nurses Ass’n v. Torlakson that insulin shots can be administered by school personnel who volunteer and get trained for the job. School nurses, the court ruled, are not required under state law. That’s a good thing for the kids who attend the 95% of California public schools that have no fulltime school nurse. It’s good for their parents as well, since some schools were telling parents to come to school to give their kids their shots, something most employed parents had difficulty doing without upsetting their employers.

But to say, as the American Diabetes Association does, that the decision should make parents of diabetic kids feel confident that their child is in good hands at school is a bit of an overstatement. Whether they can get a routine shot of insulin isn’t the only health issue that kids with diabetes face during the school day. Some will face emergency health issues specific to diabetes, including hypoglycemia and hyperglycemia. Sometimes, it may take someone with medical training to know whether a shot should be administered at all or if it’s time to do something else, such as calling the ambulance. Diabetic kids also face health issues that other kids face. Like other kids, they fall off of climbing equipment and run into each other, and they may need to be assessed for concussions. Like other kids, they may get too hot when their team is practicing in hot weather, and someone with training will know best whether to get emergency medical care.  Like other kids, they may get sick at school and need to be assessed for whether they need an hour on a couch or a call to a parent. Just as important, someone needs to figure out if it’s time to sound the alert about a communicable disease at the school.

The California legislature apparently decided that school nurses aren’t necessary because of the expense. And indeed it may be difficult to justify spending money on nurses when paying for teachers sometimes seems like a luxury. But what the parents of those California kids with diabetes know, as does the American Diabetes Association, is that a nurse is a better and safer alternative for the kids than a volunteer staff member, even one who is trained. Looking carefully at the diabetic kids, further, helps us understand that school nurses are a very good idea for all of the kids, not just those with chronic conditions. This happens a lot when a person has a disability – solving that person’s problem can improve the lives of others. (Think about curb cuts for wheelchairs the next time you’re pushing a stroller or pulling a piece of luggage on wheels.) All parents, not only those with diabetic kids, need to have confidence that someone at the child’s school is capable of paying attention to serious medical issues. It’s a good issue for parents to join together to solve.

 

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Opt-Out Moms and Special Needs Kids

A recent New York Times Magazine story addressed what had happened to “opt-out moms,” the women who, a decade or so ago, left high-paying jobs to stay home with their kids.  As author Judith Warner relates, many have gone back into the workforce, most in lower-paying jobs in less high-powered fields than the ones they left. Many of their marriages have changed as well — some have divorced while others have changed from more or less egalitarian partnerships to more traditional arrangements, with moms more responsible for the hearth and dads more responsible for the bank account.

Understanding the stories of highly privileged moms is important because their stories are sometimes thought to express the cultural norms of what parenthood should be about. Warner is careful to warn her readers away from that path by demonstrating how unusual these moms are. First, they occupy a small niche in American society – the upper middle class of highly educated and well-connected women whose equally high-powered husbands were earning enough to maintain their upper middle class lifestyle without the wife’s earnings. Women earning less money and women raising children alone rarely have the option to stop trying to make a living, even if they can’t always do it. Warner makes a second important distinction. These women dove into daily parenthood in with an intensity reflective of a norm that many professionals and ordinary Americans now think is a bit over the top. And third, many of these women enjoy such high social and professional status that, when they decided to return to paid work, their path was smooth.

But there is a fourth distinction that Warner missed, which is about the children. Children differ from one another in how much caregiving they need every day. I’m not talking about whether a child benefits from intensive parenting. I’m talking about children whose health and safety, access to education and medical care, and even capacity to speak and move depends on some adult or adults being there for him or her.

Opt-out moms and many moms with special needs children are both alike and different. They may share a commitment to intensive parenting, for example. Both may have experienced a full or partial unplanned exit from paid labor. Their marriages may exhibit a more traditionally gendered dynamic than other marriages.

Differences are just as striking. Unlike the opt-out moms, many mothers of children with special health care needs do not use the word “choice” to describe the changes in their caregiving responsibilities and employment. They describe themselves as having to do what the child needs.  Their financial losses can be extreme but law and social practices provide few remedies. The fragility of their marriages and other family social relationships can be unusually great. And their opportunities to return to work similar to what they left are highly constrained by the ongoing care needs of their children, not to mention discrimination against parents with unusual cargiving responsibilities.

Take, for example, the case of Keith, who contracted polio when he receiving the vaccine as a toddler. His pediatrician advised his parents that “constant home physical therapy” was needed, so Keith’s mother left her job as a tax attorney to care for him. She lost $173,000 in earnings over the next few years, a loss that is not recoverable under the Vaccine Act. [Riley v. Secretary of Dept. of Health and Human Services, Not Reported in Cl.Ct., 1991 WL 123583 (Cl.Ct.)]. Or consider Justin, whose schooling was interrupted repeatedly by behavior problems connected with his attention deficit disorder. His mother left her job, a management position then paying $50,000 a year, so that she could spend more time working with the school to manage his problems and, when that failed, schooling him at home. Keith’s father successfully moved to attribute income to Keith’s mother in their litigation over child support, which meant she had to go back to work to make up the child support gap, or try to raise Keith in a home with far fewer dollars. [Dunlap v. Fiorenza, 738 A.2d 312 (Md. Ct. Spec. App. 1999).]

It is vitally important to be aware of differences among parents, just as we see Judith Warner arguing in her article. It seems to me also vitally important to take into account differences among kids. Just like moms and dads, they are not all the same. When their differences make a difference to their folks, their moms and dads might want us to take note.

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Injured Kids, Injured Parents and Tort Law

When a child suffers a long-term or permanent disability because of someone’s negligent or even intentional act, the child is not the only one whose life changes. The child’s special health care needs become part of the daily caregiving routines of the parents. Those needs might include, for example, taking the child to medical appointments, interacting with health care providers, delivering medical and other therapies, working with a school to develop an educational plan, advocating with social service agencies, etc. On average, a family caregiver for a special needs child spends nearly 30 hours a week caring for the child in ways that other parents don’t confront. Most of the caregiving parents are mothers, and most of them either leave work altogether or reduce their hours of work significantly. Other consequences that caregiving parents face include mental and physical health problems, social isolation, and the deterioration of family relationships.

Let’s say the child’s injuries result from a car accident or from medical malpractice. Does the law require the driver or the doctor to pay damages to the parents for the changes in their lives? Damages for direct costs, such as medical bills, are always allowed. When caregiving reduces the parent’s earning capacity, some states recognize claims for the parent’s lost wages. In others states, responsibility is limited to the cost of employing an unskilled medical aide. In the last group, the tortfeasor owes nothing to the parents.

I call the three approaches “20/20,” astigmatism, and blindness. “20/20” applies to situations where the child is viewed realistically, that is, as a person who, by reason of age and experience, is dependent on parents for direct care and for interacting with the outside world. Law and policy suffer from astigmatism when the child’s connection and dependency are acknowledged, but the consequences that parents face are blurred. (I’ve got astigmatism and can testify to the blurriness!) Blindness is what happens when, as one court argues, parents are responsible for their kids, no matter what – no sharing of costs is appropriate, regardless of the fact that the child would not need unusual caregiving but for the tortious injury.

In my current work, I’m trying to explain why many courts suffer from blindness or astigmatism. One reason is gender. Caregiving is considered women’s work, and women should do it with happiness and generosity, so their losses should not be monetized. If any loss is acknowledged, it should only be those losses that a man might also experience, that is, paying someone else to do the caregiving. Since, for reasons of both gender and race, we pay very little for caregiving jobs, it makes sense to compensate the caregiving parent (i.e., the mother) at the same small rate. Another reason is a lack of foreseeability – perhaps tortfeasors shouldn’t be expected to anticipate that injuring a child would affect a parent’s life, so it isn’t fair to make them pay damages for that harm. This perspective is consistent with a general lack of awareness about the lives of people with disabilities and the lives of their families. That degree of ignorance may have grown over the last half century in light of radical changes in social, legal, and cultural practices around health care generally and disabled kids in particular. Family caregivers now deliver much more medical care at home, for example, and the medical regimes of their special needs children are often more complex. Also, happily, more disabled children are living at home rather than in institutions, and many more are surviving into adulthood and beyond. At the same time, more mothers are now working outside the home. Many parents raising special needs children are doing it alone, so, if a mother has to meet the unusual demands of caring for a child with special needs, her chances of losing her job and falling into poverty increase. A third reason may be horizontal equity. The unusual caregiving demands of special needs children depend on the child’s characteristics, not on whether the source of the child’s special needs is a tort. Covering the lost wages of parents of tortiously-injured children puts those families at an economic advantage compared to families of other special needs children.

I look forward to hearing your thoughts on which of the three rules seems to make the most sense, and why.

 

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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.