Public Policy and Legal Issues
When parents discover they have a child with an autistic spectrum disorder, they naturally seek professional help. Some find help from private practitioners. Others find public programs that provide assistance. In many cases, even private programs are supported by public policies established decades ago at the federal level and at the state level, when families who had children with disabilities joined hands with professionals and political leaders to create policy that would bring aid to parents who had children with special needs.
Public or social policies are the rules and standards by which scarce public resources are allocated to almost unlimited needs (Gallagher, 1994). Written social policies should provide the answer to four major questions:
Who shall receive the resources or services? (eligibility)
Who shall deliver the services? (provider)
What is the nature of the services? (scope)
What are the conditions under which the services will be delivered? (environments and procedures)
If the answers to these four questions are presented with clarity and precision, the problems of legal interpretation are reduced. However, the last three questions represent substantial policy issues for children with autistic spectrum disorders. The phrases “scarce resources” and “almost unlimited needs” guarantee a continuing struggle to obtain those needed resources by those concerned with the well being of children with autistic spectrum disorders and their families.
Federal policy for children with special needs emerged in two forms: legislation passed by Congress and a series of decisions by the courts. Some states and local communities had previously established services and policies for children with special needs, but these policies were limited and widely scattered. Congress decided that a federal mandate was necessary to provide a more unified set of services and to keep parents from frantically running from community to community, and state to state, in search of needed assistance for their children. This chapter reviews briefly the key legislation and court decisions that currently form public policy with regard to children with autism and then comments on the adequacy of services and resources.
The first key federal legislation relevant to children with autistic spectrum disorders was the Education of All Handicapped Children Act (P.L. 94–142) in 1975. This legislation has been amended many times since and now carries the title of Individuals with Disability Education Act (IDEA) (P.L. 105–17). However, legislation can only set the rules; it cannot guarantee that they will be carried out or followed faithfully. The citizens’ recourse, when they think the law is not being faithfully administered, is to turn to the courts for help. By the end of 1999, almost 150 cases seeking more appropriate educational programs for children with autistic spectrum disorders were in the hearing rooms of the courts (Mandlawitz, 1999). So, clearly, there are serious policy issues still unsettled in this special area.
Children with autism are specifically included in the IDEA legislation (U.S.C. 1401(3)(A)):
The term ‘child with a disability’ means a child:
with mental retardation, hearing impairments (including deafness) speech or language impairments, visual impairments (including blindness), serious emotional disturbance (hereinafter referred to as ‘emotional disturbance’) orthopedic impairments, autism, traumatic brain injury, other health impairments or specific learning disabilities and
who, by reason thereof, needs special education and related services.
The regulations (34 C.F.R. 300.7 © (1)) further define autism: Autism means a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age three that adversely affects a child’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environ-
mental change or change in daily routines, and unusual responses to sensory experiences.
There is no question of the intent of Congress to include children with autism in this legislation. However, there are two questions that must be answered before a child qualifies for services under IDEA: Does the child have a qualifying disability? Does the child need special education due to the disability?
The diagnosis “with autism” clearly answers the first question, and it is rare that a child with autism does not need special education services as well as a number of related services also approved under this law. Therefore, children with autism, including all autistic spectrum disorders, are a full-fledged subgroup entitled to all the provisions of this comprehensive legislation.
In addition to special educational services, children with autism can take advantage of the provisions in IDEA that deal with “related services.” These services include speech-language pathology and audiology services, psychological services, physical and occupational therapy, recreation (including therapeutic recreation), early identification and assessment of disabilities, counseling services, including rehabilitation counseling, orientation and mobility services, medical services for diagnostic or evaluation purposes, school health services, social work services in school, and parent counseling and training.
Six major principles, extending back to the original legislation, have formed the basis of legal rights of children with special needs under the IDEA (Kirk et al., 2000):
Zero reject. All children with disabilities must be provided a free and appropriate public education (FAPE). This means local school systems do not have the option to decide whether or not to provide needed services. For children with autistic spectrum disorders, this means that no such child, regardless of degree of impairment or manifestation of difficult behavior, can be denied educational services.
Nondiscriminatory evaluation. Each student must receive a full individual examination before being placed in a special education program, with tests appropriate to the child’s cultural and linguistic background. For children with autistic spectrum disorders this means an appropriate evaluation that is carried out by personnel with experience in the use of the appropriate tests and protocols for children with these disorders.
Individualized Education Program. One of the unique aspects of this law was the requirement for an individualized education plan (IEP).
A team of people are required to establish an IEP, and the law notes that this team should consist of at least one general education teacher, the special education teacher, a representative of the school district qualified to provide or supervise specially designed instruction, an individual who can interpret the instructional implications of evaluation results, the student (if appropriate), and other individuals who have knowledge or special expertise (20 U.S.C, 1414 (d) (1) (B)). An IEP must be written for every student with a disability who is receiving special education. The IEP must describe the child’s current performance and goals for the school year, the particular special education services to be delivered, and the procedures by which outcomes are evaluated. For children with autistic spectrum disorders, this is an important provision, because it requires the schools to develop a program, carried out by personnel who are skilled in working with children with these disorders, that fits the needs of each particular child and does not just routinely place a child in a program that already exists for other children with special needs. A child with autistic spectrum disorders should have the IEP team assembled in the school district, and it is their responsibility to chart strengths and needs of the child and family, as well as goals of the individual program, the means for carrying it out, and the means for determining if the plan is successful.
A companion bill for infants and toddlers with disabilities (P.L. 99– 457) had a similar provision to the IEP for an Individual Family Service Plan (IFSP). Providing services to address the needs of children under age 3 years with disabilities is a responsibility of states. How this responsibility is assigned varies from state to state, but it may fall to education or health or social service agencies. As local educational authorities are obligated to provide appropriate educational programs for children with disabilities who are 3 years and older, so states and local communities are obligated to provide appropriate services for children under age 3 years. However, as for older children, the gap between the intent of the law and its implementation is often large. The number of lawsuits brought by parents are one indication of dissatisfaction with the planning process. Similar to an IEP, an IFSP multidisciplinary team should be assembled that specifies the strengths and needs of children and their families, goals of the individualized program, how these goals will be addressed, and ways to measure the effectiveness of the plan. The appropriateness of an IFSP should be determined by the extent to which it meets the needs of children with autistic spectrum disorders and their families.
Least Restrictive Environment. As much as possible, children with disabilities must be educated with children without disabilities. The educational philosophy is to move children with special needs as close to the normal setting (regular classroom) as feasible. For a child with an autistic spectrum disorder, this means that there is an expectation that the child
should be interacting on a regular basis with children without autism, if at all possible, and within a regular classroom, with reverse mainstreaming or in other supervised settings. When recommending another placement, a school must explain in writing why a child is not being placed in a regular classroom.
The appropriateness of the placement has received much attention for children with autism. Some general ways that the courts have used to settle such placement issues is to pose the following questions (Richmond Community Schools 301DELR 208 ([SEA IN 1999]):
What are the educational benefits to the student in the general education classroom, with supplementary aids and services, as compared with the educational benefits of a special education classroom?
What will be the nonacademic or personal benefits to the student in interactions with peers who do not have disabilities?
What would be the effect of the presence of the student on the teacher and other students in the general education classroom?
What would be the relative costs for providing necessary supplementary aids and services to the student in the general education classroom?
Due Process. Due process is a set of legal procedures to ensure the fairness of educational decisions and the accountability of both professionals and parents in making those decisions. For a child with an autistic spectrum disorder, this means that the parents can call a hearing when they do not agree with the school’s plans for their child, they can obtain an individual evaluation from a qualified examiner outside the school system, and they can take other actions to ensure that both family and child have channels through which to voice their interests and concerns.
Parental Participation. Parents are to be included in the development of the IEP, and they have the right to access their child’s educational records. For a child with an autistic spectrum disorder, this means that parents can obtain the test results and educational evaluations of their child and can participate as an equal in the development of the IEP.
This IDEA law is an entitlement, meaning that all citizens with disabilities have access to its provisions. Other relevant laws, such as the Americans with Disabilities Act (P.L. 101–336) and Section 504 of the Rehabilitation Act (29 U.S.C., Sec. 794) are designed as protection against discrimination or unfair treatment because of a disability. They come into play when discrimination can be documented. A substantial number of due process hearings and court cases have resulted from the concerns of some parents of children with autistic spectrum disorders that the legal rights of their child and family have not been observed.
Role of the Courts
For the past few decades the courts have been one of the protectors of the rights of children with disabilities and their families. Beginning with the PARC case (Pennsylvania Association for Retarded Children v. Commonwealth of Pennsylvania, 1972), the courts have tended to side with the rights of the child to a free and appropriate education. But just what does “appropriate” mean in this context? This term has been the basis of many of the legal issues raised by parents and advocates. Parents often believe that the local education authority (LEA) is assuming less responsibility than it should in providing special services for children with autistic spectrum disorders. The schools, faced with high costs for some of the recommended treatments for their students with autism, have tried to find a way of providing services that, while appropriate, will not overburden their budgets. These two understandable positions create the fertile ground for many legal disputes.
One of the key judicial decisions in recent times was made in what is widely known as the Rowley case (Board of Education of the Hendrick Hudson School District v. Rowley, 458 U.S. 176, 1982). In that decision, the court rejected the request of a girl with deafness for a classroom interpreter, reasoning that the school had already provided amplification devices for the girl and she seemed to be performing at an appropriate level in school. Therefore, there was no compelling evidence that she was being harmed through the services being provided by the school.
The Supreme Court held in the Rowley case that the purpose of IDEA was to provide appropriate, not optimal, special education, and, to that end, courts may not substitute their notion of sound educational policy for those of the school authorities. A subsequent case (Polk v. Central Susquehanna Intermediate Unit 16, 853 F.2nd 171, 180–184 (3rd Cir. 1988)) made it clear that such services must be more than de minimus: “While appropriate does not mean ‘the best possible education that a school could provide if given access to unlimited funds,’ it does require the state to provide personalized instruction with sufficient support services to permit the handicapped child to benefit educationally.”
So where is the line to be drawn between optimal and meaningful services? While the Supreme Court clearly meant the school systems to have the predominant role in deciding what “appropriate treatment” should be, if a school system appears to be less than diligent in making such plans, or violates procedures of due process, or if expert testimony suggests that the schools are doing less than necessary, then decisions may be rendered against the schools (Mandlawitz, 1999).
One of the more common issues is to determine whether the states and schools, through their control of the development of the legally required IFSP and IEP, are respectively providing only the treatments or
personnel that they have available, rather than the treatment that the child needs. Courts have been well aware that the presumed equality of parents in the process of developing an IEP often is not observed, and that some schools have tried to present their version of an IEP plan whether or not the parents really agreed.
Intensity of treatment has become a major source of contention in the courts for cases of children with autism. Many parents, convinced of the benefits of applied behavioral analysis techniques and of Lovaas-type therapies (Lovaas, 1987), have sued the school systems so that their child could receive the intense treatments (25–40 hours a week) that such therapies require. Hearing officers and the courts have determined that the degree of intensity should depend on the needs of an individual child. In many of these cases, the schools have countered with a suggestion of fewer hours of therapy and more in-class activities. The setting for the treatment program has become another issue, since IDEA stresses that the services should be provided in the least restrictive environment, while many parents wish to have home-based service provided.
ADEQUACY OF SERVICES AND RESOURCES
At the present time, IDEA serves as the basic education legislation that provides support for children with disabilities, which clearly includes children with autistic spectrum disorders. Some advocates have proposed special legislation dealing only with children with autism, but two objections have been raised. First, there is substantial doubt that legislation dealing with such a small segment of the populace would receive favorable treatment. It took many years, with the entire disability community behind it, to reach the current level of support for IDEA. Second, there is little reason to believe that the language in IDEA is the source of the problem. It is a “disability neutral” piece of legislation, and it appears that it is the way the current law is being implemented that raises questions about services for children with autistic spectrum disorders, not the provisions of the law itself. Another law would likely have the same problems of implementation as IDEA.
The 1997 amendments to IDEA (P.L. 105–17) did include some specific references to children with autism, including provisions for outcome-based education, greater access to the general curriculum, clarification of discipline provisions, and creation of a rebuttable presumption in favor of functional behavioral assessment and positive behavioral interventions and supports. This addition of special sections and amendments to the base legislation to deal with the special problems of children with autism is an appropriate strategy to follow in the future.
Parents and advocates for children with autistic spectrum disorders sometimes question whether the general facilities made available for chil-
dren with disabilities really fit the needs of children with these disorders. If a school psychologist with no experience or background in examining children with autism is called into the IEP hearings, can his or her contribution be considered of professional quality in developing a plan for this child? Similarly, are teachers trained in general special education techniques, but with no additional preparation regarding children with autistic spectrum disorders, really ready to accept the instructional responsibilities for those children? It is possible that even a well designed special education program for a school district could still fall short of adequately providing for the special needs of children with autistic spectrum disorders. It seems clear that the treatment costs for children with autism— sometimes amounting to $40,000 to $60,000 a year—lie at the heart of many of the disputes between parents and school systems, with the schools trying to reduce their financial obligations while still providing appropriate services to the child and family. A number of states have attempted to bring a variety of resources together to deal with the fiscal problems created by the recommended intensive treatments for children with autism and their families. Several states (e.g., Wisconsin, Vermont) have used Medicaid reimbursement as a primary source of funds, while other states (North Carolina, Connecticut) use a combination of funds (developmental disabilities, Part C of IDEA, private insurance, etc.). Some systematic strategy and pattern of funding clearly seems to be called for (Hurth et al., 2000).
Many disputes arise because of the uncertainties of the various parties about what is appropriate and available in individual circumstances. It would be useful for all concerned to have an updated summary of current case law on cases with children with autistic spectrum disorders, accessible on the Internet or from other sources, so that schools and parents can understand the various options available to them that are consistent with FAPE. Policies are always evolving as new knowledge and problems are introduced into the environment. The professional community that wishes to stand with the parents and the needs of their children should not be placed in an antagonistic posture to them by rules and regulations that hinder rather than help the positive relationship between school and family.
In addition, levels of information about autistic spectrum disorders vary greatly within the professional communities that make funding and policy recommendations and decisions, including state task forces in peer education and review panels in federal agencies. It is therefore crucial that persons knowledgeable in the range of needs and interventions associated with autistic spectrum disorders be included in or consulted by these communities.