The Legal Rights of Children With Autism

Interview
The Legal Rights of Children With Autism: An Expert Interview With Jill G. Escher, BA, MA, JD

Medscape Psychiatry & Mental Health. 2005;10(2) ©2005 Medscape Posted 07/28/2005

Editor's Note:
On behalf of Medscape, Randall White, MD, interviewed Jill G. Escher, BA, MA, JD, a California attorney in the field of autism law, whose son has autism.

Like many parents, she met resistance from the school district when she attempted to have her child evaluated for special educational services. To assist other parents who face this situation, she discusses pertinent laws, policies, and procedures intended to protect children with autism.

Medscape: How is autism defined by federal law?

Ms. Escher: Unfortunately, autism is defined in very vague terms. For a definition by federal law, I refer to the Individuals With Disabilities Education Act (IDEA).[1] This act confers the right to a free and appropriate public education to children with disabilities. The first step is to determine whether the particular child is eligible. There are several eligibility categories; some have to do with well-understood problems like blindness, deafness, and speech and language disorders. One of the categories is autism.

There are other pertinent [federal] laws, including section 504 of the Rehabilitation Act,[2] that can help parents obtain specialized services for autistic children. But when it comes to education, IDEA is the primary statute that creates a structure for providing special services. The Rehabilitation Act requires the district to accommodate children with disabilities so that they can be included in ordinary schooling. A typical example of a request via 504 is a child in a wheelchair who cannot go on field trips. On behalf of the child, a parent or guardian would request a 504 plan with the school district to ensure that he or she has equal access for field trips. Usually, because children with autism are deemed eligible for special services under IDEA, they tend not to rely on section 504.

Medscape: When was IDEA passed?

Ms. Escher: Initially, in 1974. It was substantially revised in 1997, and then it was reauthorized with some amendments in 2005. The 1970s was when it was first recognized that there were hundreds of thousands of disabled children who weren't getting any education. At that time, there was no requirement to force the school district to educate these children; so many of them languished at home or in baby-sitting situations.

Medscape: What does the parent of a child with autism need to do to initiate appropriate educational services?

Ms. Escher: First and foremost, if parents believe that their child has some form of autism, it is critical to obtain at least 1 independent expert evaluation for that child. Under IDEA, the school district must provide an evaluation of its own. But, in my experience, the school district evaluations are seldom trustworthy or sufficiently comprehensive. They tend to underdiagnose children, and their opinions tend to be preformed. In addition, the evaluations are performed by school psychologists who generally have little knowledge about both autism and the range of educational interventions available for such children, including which of
these interventions is best for a given child. It is extremely important that parents find the time and, if possible, the money to locate well-qualified experts in autism who can complete a comprehensive evaluation of the child, including recommendations for educational interventions. Universities often serve as an excellent resource for such experts. In California, for example, the University of California at San Francisco, at Davis, or at Los Angeles all have excellent programs with highly regarded experts who routinely do this work. The cost of these
evaluations can run from $700 to $3000. Insurance will probably cover some of the cost, but to get the most appropriate, [unbiased] services, parents usually have to make the investment.

Medscape: What happens once the parent has the evaluation in hand?

Ms. Escher: The parent should give a copy to the special education contact at the school district. The district is obligated to review all independent evaluations submitted by the parents, including from the [primary care] physician, a neurologist, a psychiatrist, or a psychologist. This type of an evaluation usually comes from a psychologist or a psychiatrist. The district has the obligation to review those, but not to agree with them. Well before the individualized education plan (IEP) meeting, everybody on the child's IEP team should review the parents' independent evaluation(s). Here is a likely scenario: The school district evaluates a child and finds that the child is autistic. However, they only recommend a half hour of speech therapy each week and 20 hours in a mixed-disabilities special education classroom. In contrast, an evaluation by an expert who really understands autism and what is best for the particular autistic child recommends several hours each week of one-on-one speech therapy and 25 hours or more in an intensive, autism-specific program at home or at school. So, the IEP team can be faced with divergent recommendations, and it's very important for the parents to have all the evidence there supporting their view of what their child needs.

Medscape: In this type of circumstance, what is the school district required to do?

Ms. Escher: The school district is required to hold an IEP meeting before the child commences services through the district. States vary in the details of the timeline, but on the day children turn 3 years old, they are supposed to start a program with the district. The IEP should happen well in advance of the child's third birthday. I also want to emphasize that the school district is obligated to provide evaluations in all areas of the child's disabilities, so that would include not only the psychological evaluations, but also a speech evaluation and an occupational therapy evaluation, and, in some cases, a physical therapy evaluation. There could be others; it depends on the particular child's situation. Therefore,
parents may want to obtain independent evaluations in these areas as well. Evaluations should not only describe the scope of the disability, but also set forth recommendations for programming. These should be done before the IEP.

Medscape: Parents are permitted to participate in the IEP meeting, correct?

Ms. Escher: Not only are they permitted to; the district is required to make all reasonable efforts to ensure their participation. Parents are considered full and equal participants at an IEP meeting. But, while that sounds very good on paper, parents are not usually treated as full and equal participants because the school district regularly withholds vital information about their programming and their policies. In certain cases, the district has even withheld information about the child, and that has affected what services were offered.

Medscape: How commonly do parents meet resistance to implementing the experts' recommendations?

Ms. Escher: Almost always. In autism, I don't think I've ever heard of a case when a child with autism was routinely given the set of services that the independent experts had suggested. It's all about money. There was a recent federal report showing that a child with autism costs a district something like $19,000 per year, and in California, the number is substantially higher, especially for younger children with autism -- about $25,000-$90,000 annually. It's extremely expensive because the autistic child, especially when young, will often require one-on-one intervention.

Medscape: What is the procedure to resolve the difference between parents and the district?

Ms. Escher: The procedure is very complicated. If at the IEP meeting (or as often happens, series of IEP meetings), the parents are still unhappy with what the district is wiling to provide, the parents have a couple of choices. The particular procedures vary a little bit from state to state, but the parents generally have the option to file a complaint with the state, which is not the preferred choice. They can ask for mediation, which is sometimes successful. But usually, if this is an irresolvable conflict with the district, the parents will file for a due process hearing -- in other words, an administrative appeal in front of an administrative law judge who works through the state department of education. I would say that in excess of 80% of the time, after parents file for a due process hearing, the dispute is settled. Parents who hire an attorney have a much higher
success rate than those who choose to go it alone. Going for due process, while it is the dispute service authorized by law, can be very time-consuming and expensive for parents.

Medscape: And what if parents can't hire an attorney?

Ms. Escher: Well, that happens a lot. Parents can hire an advocate, who is a layperson schooled in IDEA and knowledgeable about education services. In most states, there are many advocates willing to do this sort of work. Often, the parents just go it alone and look for resources that can help them on the Web. One really good source for parents is www.wrightslaw.com (http://www.wrightslaw.com/) .[3] It's an excellent site; I highly recommend that parents visit it. (Note: Ms. Escher[4] also has established a valuable Web site for parents, _http://www.autism-law.com_ (http://www.autism-law.com/) .) Unfortunately, this is a system like many in the world where it helps to have money to hire a lawyer. If you prevail, you are entitled to at least a portion of your attorney's fees.

Medscape: How equipped are most school districts to meet the needs of autistic and developmentally disabled children?

Ms. Escher: The answer is that except for a few areas, the quality and quantity of services are very lacking. There's a dramatic shortage of teachers who are trained and experienced to work with autistic kids. But I think there's also something else a bit more sinister at work -- school districts have a very strong disincentive to provide quality autism programs because the last thing they want is to gain a reputation for excellence in autism. They don't want more autistic kids to move into the district. More autistic children means more cost. In addition, there are no
standards for providing autism education. Federal law is entirely procedural; IDEA has not 1 word that specifies anything about the substance of what needs to happen in the classroom. The idea that Congress had is that these kids have individualized needs. In addition, there are no standards for providing autism education. Federal law is entirely procedural; IDEA has not 1 word that specifies anything about the substance of what needs to happen in the classroom. The idea that Congress had is that these kids have individualized needs: We [Congress] can't possibly prescribe appropriate programming for every child; so, let's set out a series of procedures for districts and parents to engage in, and hopefully, in this tussle over each and every aspect, the process will yield an appropriate program for a child Medscape: Has there been an effort for professionals, such as teachers and psychologists, to create a consensus on the best approach for autistic children in school?

Ms. Escher: The most important one to date is the National Academy of Sciences book called Educating Children With Autism, in which a group of about 14 autism specialists tried to synthesize best practices.[5]

Medscape: Have any school districts adopted them?

Ms. Escher: The book didn't get into a lot of specifics. It recommended a minimum of 25 hours/week of intensive intervention 12 months a year. The book really relates to children age 8 and younger. There's an important effort that just got under way called the Autism Treatment Network, which has a Web site.[6] It is a collaboration among 6 universities to come up with some treatment standards, which are going to focus on treatment by physicians. But, my understanding is that they are looking at educational interventions as well. Naturally, no one set of standards is going to provide guidance for every single autistic child. However, I think that there should be some joint understanding of minimum practices. Right now,
there is so much debate and controversy, it is hard to put standards together. Every time a parent walks into an IEP meeting, they have to reinvent the wheel because there's not a single word in any law about what a school district should do for an autistic child.

Medscape: I wanted to ask if you have any advice for people in rural areas with autism, because I'm sure it is even more difficult.

Ms. Escher: It is extremely difficult. People in rural areas often have to devise a program on their own. Frequently, where there really aren't any autism programs, the parents pay out of pocket to get a therapist trained in applied behavioral analysis or similar techniques, and that therapist will then train others. The parents can then ask the school district for reimbursement.

Medscape: Is reimbursement usually available?

Ms. Escher: Yes, reimbursement is available, but parents have to go through certain procedures to get that. They have to make the request for services and be denied; then after they provide written notice to the district of their intent, they can go ahead and seek reimbursement through a due process hearing.

Medscape: Is there anything more you think people should know?

Ms. Escher: Unfortunately, when parents have a child with autism, they have to learn not only how to adjust their lives and how to care for a child with a catastrophic disability; they have to learn how to be quasi-attorneys. We have a system based entirely on procedure, and parents should make all efforts to learn about the procedures and use them to their advantage.

References

1. US Department of Education. Individuals with Disabilities Education
Improvement Act (IDEA). 2004. Available at:
_http://www.ed.gov/policy/speced/leg/edpicks.jhtml_
(http://www.ed.gov/policy/speced/leg/edpicks.jhtml)
Accessed June 30, 2005.
2. US Department of Education. The Rehabilitation Act. Available at:
_http://www.ed.gov/policy/speced/leg/edpicks.jhtml_
(http://www.ed.gov/policy/speced/leg/edpicks.jhtml) Accessed June 30,
2005.
3. Wright PWD, Wright PD. Wrightslaw. Available at:
_http://www.wrightslaw.com/_ (http://www.wrightslaw.com/) Accessed May 5,
2005.
4. Escher J. Autism Law: A Parent's Guide to Federal and California
Special Education Law. Available at: _http://www.autism-law.com/_
(http://www.autism-law.com/) Accessed June 30, 2005.
5. National Research Council, Committee on Educational Interventions
for Children with Autism. In: Lord C, McGee JP, eds. Educating Children
With
Autism. Washington, DC: National Academy Press; 2001. Available at:
_http://books.nap.edu/openbook/0309072697/html/index.html_
(http://books.nap.edu/openbook/0309072697/html/index.html) Accessed May 5,
2005.
6. Autism Treatment Network. Available at:
_http://autismtreatmentnetwork.org/about.htm_
(http://autismtreatmentnetwork.org/about.htm) Accessed May
5, 2005.

Funding Information
Supported by an educational grant from Janssen.

Jill G. Escher, BA, MA, JD, Attorney-at-Law, San Jose, California

Disclosure: Randall White, MD, has disclosed that he owns stock, stock options, or bonds in Novartis AG ADR, Millipore Corporation, Novo Nordisk, and Sanofi-Aventis.

Disclosure: Jill G. Escher, BA, MA, JD, has disclosed no relevant financial
relationships.