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How to answer when Insurance Company says
that they will not pay for ABA because ABA is Experimental.


In addition to the article below by Dr. Larsson, there is another on
the Kennedy Krieger Institute website that is well written.


 

Intensive Early Intervention using Behavior Therapy
is No Longer Experimental.

Eric V. Larsson, Ph.D.

Many fad-like interventions have been attempted to treat people who suffer from autism, but most have had little or no tangible results. Therefore it is not surprising that insurance companies and government agencies are hesitant to extend benefits to young children who suffer from autism. However, in 1987, after 25 years of investigation comprising over 400 research studies conducted at University centers throughout the world by many researchers in the field of autism, the UCLA Young Autism Project, under the direction of O. Ivar Lovaas, Ph.D., was able to publish a long-term outcome study showing that 47 percent of the children treated were able to fully recover from autism. By all published accounts, these results were unprecedented. Subsequent research by independent laboratories around the world, is continuing to replicate these profound results and empower families to effectively treat their children.

The difficulties of conducting such research are daunting. In order to be effective, the behavior therapy program must be intensive and must be delivered in early childhood. In effect, a family which chooses this therapy must organize their household into a 24-hour therapeutic environment for three or more years in order to remediate all of the symptoms of autism. To do so, they require 55 hours per week of extensive, specialized consultation and direct home-based treatment for 50 weeks per year. Such long-term research has been difficult to conduct and poorly funded.

To be able to access such and expensive specialized treatment, many families have litigated with their governments, schools, and insurance companies for funding, and many have succeeded. However, these expensive actions have polarized the payors and the advocates. One argument against funding has been that the treatment is still experimental. And indeed, up until the late 1990ís there was little consensus over interpretations of this large body of research.

But as a result of the findings, and the extreme expense required, over the past five years, state and federal agencies and independent review panels have investigated and found that the findings, in their total sum, have been bona fide. In 1999, task forces of the New York State Department of Health and the Maine Administrators of Services for Children with Disabilities each stringently applied scientific standards of proof to the program and found that it alone, of all possible treatments for children with autism, had been proven effective. Also in 1999, U.S. Surgeon General David Satcher promoted the results of the program in his report on Mental Health. (The National Institutes of Mental Health have funded research on this program for over 30 years.) Professional associations such as the American Academy of Child and Adolescent Psychiatry, the American Academy of Neurology, and the American Academy of Pediatrics also followed suit in their development of practice standards. These independent professional review panels are reporting that the intensive early intervention is highly effective in meeting the needs of the children. Each of these agencies have no vested interest in these services, and the panel members have largely been experts in the field who themselves are not treatment providers. Actual statements from these published reports are quoted below.

Independent Reviews of Intensive Early Intervention Using Behavior Therapy.

Policy Statement of the American Academy Of Pediatrics: The Pediatrician's Role in the Diagnosis and Management of Autistic Spectrum Disorder in Children:

"Currently accepted strategies are to improve the overall functional status of the child by enrolling the child in an appropriate and intensive early intervention program that promotes development of communication, social, adaptive, behavioral, and academic skills; decrease maladaptive and repetitive behaviors through use of behavioral and sometimes pharmacologic strategies;"

"Early diagnosis resulting in early, appropriate, and consistent intervention has also been shown to be associated with improved long-term outcomes."

"Behavioral training, including communication development, has been shown to be effective in reducing problem behaviors and improving adaptation."

"There is a growing body of evidence that intensive early intervention services for children in whom autism is diagnosed before 5 years of age may lead to better overall outcomes."

"One of the mainstays of the management of ASD in children at any age is the implementation of behavioral training and management protocols at home and at school. Behavioral management must go hand-in-hand with structured teaching of skills to prevent undesirable behavior from developing. Behavioral training, including teaching appropriate communication behaviors, has been shown to be effective in decreasing behavior problems and improving adaptation."

American Academy Of Pediatrics (2001). Policy Statement: The Pediatrician's Role in the Diagnosis and Management of Autistic Spectrum Disorder in Children (RE060018) Pediatrics, 107, 1221-1226. Committee on Children With Disabilities (2001). Technical Report: The Pediatrician's Role in the Diagnosis and Management of Autistic Spectrum Disorder in Children. Pediatrics, 107, e85.

National Research Council: Educating Children with Autism:

"Early research on the benefits of applied behavior analysis by Lovaas and his colleagues (1973) showed that children with autism who returned to a home prepared to support their learning maintained their treatment gains better than children who went to institutional settings that failed to carry over the treatment methods."

"Outcomes of discrete trial approaches have included improvements in IQ scores, which are correlated with language skills, and improvements in communication domains of broader measures,"

"There is now a large body of empirical support for more contemporary behavioral approaches using naturalistic teaching methods that demonstrate efficacy for teaching not only speech and language, but also communication."

"Behavioral interventions use the powerful tools of operant learning to treat symptoms of autism spectrum disorders."

"Some advantages of the behavioral research on teaching social skills have been the measurement of generalization and maintenance, attention to antecedents and consequences, and use of systematic strategies to teach complex skills by breaking them down into smaller, teachable parts. Some drawbacks of traditional behavioral approaches are the complex data systems that often accompany them and that may impede their use in more typical settings, as well as the lack of training in their use that most staff members on early childhood teams receive."

"A state fund for intensive intervention, or more systematic use of Medicaid waivers or other patterns of funding currently in place in some states, should be considered."

National Research Council (2001). Educating Children with Autism, Committee on Educational Interventions for Children with Autism, Division of Behavioral and Social Sciences and Education, Washington, D.C.: National Academy Press.

Report of the Maine Administrators of Services for Children with Disabilities:

"Over 30 years of rigorous research and peer review of applied behavior analysisí effectiveness for individuals with autism demonstrate ABA has been objectively substantiated as effective based upon the scope and quality of science."

"Early interventionists should leverage early autism diagnosis with the proven efficacy of intensive ABA for optimal outcome and long-term cost benefit."

"The importance of early, intensive intervention for children with autism cannot be overstated."

"Furthermore, early, intensive, effective intervention offers the hope of significant cost/benefit."

Maine Administrators of Services for Children with Disabilities (2000). Report of the MADSEC Autism Task Force. MADSEC, Manchester, ME.

Clinical Practice Guideline Report of the Recommendations for Autism and Pervasive Developmental Disorders by the New York State Department of Health:

"Based upon strong scientific evidence, it is recommended that principles of applied behavior analysis and behavior intervention strategies be included as an important element of any intervention program for young children with autism."

"Based upon the panel consensus opinion, it is recommended that all professional and paraprofessionals who function as therapists in an intensive behavioral intervention program receive regular supervision from a qualified professional with specific expertise in applied behavioral approaches."

"Based upon strong scientific evidence, it is important to include parents as active participants in the intervention team to the extent of their interests, resources, and abilities."

"Based upon strong scientific evidence, it is recommended that training of parents in behavioral methods for interacting with their child be extensive and ongoing and include regular consultation with a qualified professional."

New York State Department of Health Early Intervention Program. (1999). Clinical Practice Guideline Report of the Recommendations for Autism/Pervasive Developmental Disorders. New York State Department of Health, Albany, NY.

Mental Health: A Report of the U.S. Surgeon General:

"Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior.

"A well-designed study of a psychosocial intervention was carried out by Lovaas and colleagues. Nineteen children with autism were treated intensively with behavior therapy for 2 years and compared with two control groups. Followup of the experimental group in first grade, in late childhood, and in adolescence found that nearly half the experimental group but almost none of the children in the matched control group were able to participate in regular schooling."

Satcher, D. (1999). Mental health: A report of the surgeon general. U.S. Public Health Service. Bethesda, MD.

Practice Parameters Consensus Panel of the following Professional Organizations and Agencies:

(American Academy of Neurology

American Academy of Family Physicians

American Academy of Pediatrics

American Occupational Therapy Association

American Psychological Association

American Speech-Language Hearing Association

Society for Developmental and Behavioral Pediatrics

Autism Society of America

National Alliance for Autism Research

National Institute of Child Health & Human Development

National Institute of Mental Health):

"The press for early identification comes from evidence gathered over the past 10 years that intensive early intervention in optimal educational settings results in improved outcomes in most young children with autism, including speech in 75% or more and significant increases in rates of developmental progress and intellectual performance."

"However, these kinds of outcomes have been documented only for children who receive 2 years or more of intensive intervention services during the preschool years."

"Autism must be recognized as a medical disorder, and managed care policy must cease to deny appropriate medical or other therapeutic care under the rubric of "developmental delay" or "mental health condition."

"Existing governmental agencies that provide services to individuals with developmental disabilities must also change their eligibility criteria to include all individuals on the autistic spectrum, whether or not the relatively narrow criteria for Autistic Disorder are met, who nonetheless must also receive the same adequate assessments, appropriate diagnoses, and treatment options as do those with the formal diagnosis of Autistic Disorder."

Filipek, P.A. et al. (1999). The screening and diagnosis of autistic spectrum disorders. Journal of Autism and Developmental Disorders. 29, 439-484.

Practice Parameters for Autism by the American Academy of Child and Adolescent Psychiatry:

"At the present time the best available evidence suggests the importance of appropriate and intensive educational interventions to foster acquisition of basic social, communicative, and cognitive skills related to ultimate outcome."

"Early and sustained intervention appears to be particularly important, regardless of the philosophy of the program, so long as a high degree of structure is provided. Such programs have typically incorporated behavior modification procedures and applied behavior analysis."

"These methods build upon a large body of research on the application of learning principles to the education of children with autism and related conditions."

"It is clear that behavioral interventions can significantly facilitate acquisition of language, social, and other skills and that behavioral improvement is helpful in reducing levels of parental stress."

"Considerable time (and money) is required for implementation of such programs, and older and more intellectually handicapped individuals are apparently less likely to respond."

Volkmar, F., Cook, E.H., Pomeroy, J., Realmuto, G. & Tanguay, P. (1999). Practice parameters for the assessment and treatment of children, adolescents, and adults with autism and other pervasive developmental disorders. Journal of the American Academy of Child and Adolescent Psychiatry, 38 (Supplement), 32s-54s.

Decision of the Supreme Court of British Columbia:

"What children experience in their early years will shape the rest of their lives. We now know from research in a variety of sectors, that children's early brain development has a profound effect on their ability to learn and on their behaviour, coping skills and health later in life."

"Research also indicates that intensive early behavioural intervention with children with autism can make a significant difference in their ability to learn and keep pace with their peers. With the intervention many children with autism will make considerable gains by grade one."

"[1] These words embody the philosophy underlying the Ontario Government's "Intensive Early Intervention Program For Children With Autism" commenced in 1999, and numerous programmes undertaken in other provinces, the United States and several countries."

"[156] The Crown discriminates against the petitioners contrary to s. 15(1) by failing to accommodate their disadvantaged position by providing effective treatment for autism. It is beyond debate that the appropriate treatment is ABA or early intensive behavioural intervention."

Auton et al. v. AGBC. (2000). British Columbia Supreme Court 1142.

Resulting State Action.

As a result of these independent reviews, many states have already initiated formal funding for this treatment. The states of Maine, Massachusetts, Vermont, Connecticut, New York, Pennsylvania, Maryland, North Carolina, and Wisconsin, as well as the provinces of Ontario, Manitoba, and Alberta, have formal state-wide funds for the program, most of which use Medicaid funds. In California, the Regional Centers administer Medicaid funds, and several regions have formal Medicaid funding streams for the program. In Minnesota, a state law was passed providing for Medicaid funding of the program, which goes into effect on January 1, 2003 (Minnesota Statutes 2001, section 256B.0625, Subd. 5a: INTENSIVE EARLY INTERVENTION BEHAVIOR THERAPY SERVICES FOR CHILDREN WITH AUTISM SPECTRUM DISORDERS).

Summary.

One of the most thorough and well regarded independent reviews is the report commissioned by the National Research Council. Commenting on the specific question of whether this treatment is experimental, the Council reported: "However, there is substantial research supporting the effectiveness of many specific therapeutic techniques and of comprehensive programs in contrast to less intense, nonspecific interventions." It is important to keep in mind, that this form of treatment is the only extensively researched and validated form of treatment of autism, and it is ironic that those, who would be required to fund the research, use the fact that researchers have been in the forefront of the development of such treatment, to imply that the treatment continues to be experimental. Intensive Early Intervention using Behavior Therapy is the only proven form of treatment for young children who suffer from autism.

Bibliography: Independent Reports on the Effectiveness of Intensive Early Intervention and Behavior Therapy

American Academy Of Pediatrics (2001). Policy Statement: The Pediatrician's Role in the Diagnosis and Management of Autistic Spectrum Disorder in Children (RE060018) Pediatrics, 107, 1221-1226. http://www.aap.org/policy/re060018.html

Auton et al. v. AGBC. (2000). British Columbia Supreme Court 1142. Decision can be read at: http://www.featbc.org/legal_issues/

Committee on Children With Disabilities (2001). Technical Report: The Pediatrician's Role in the Diagnosis and Management of Autistic Spectrum Disorder in Children. Pediatrics, 107, e85. http://www.pediatrics.org/cgi/content/full/107/5/e85

Filipek, P.A., et. al. (1999). The screening and diagnosis of autistic spectrum disorders. Journal of Autism and Developmental Disorders, 29, 439-484.

Maine Administrators of Services for Children with Disabilities (2000). Report of the MADSEC Autism Task Force, Revised Edition.. Kennebec Centre, RR 2 Box 1856, Manchester, ME 04351, http://www.madsec.org/madsec/ATFReport.doc

National Research Council (2001). Educating Children with Autism, Committee on Educational Interventions for Children with Autism, Division of Behavioral and Social Sciences and Education, Washington, D.C.: National Academy Press. http://books.nap.edu/books/0309072697/html/index.html

New York State Department of Health Early Intervention Program (1999). Clinical Practice Guideline: The Guideline Technical Report, Autism/Pervasive Developmental Disorders, Assessment and Intervention for Young Children. Publication #4217. Health Education Services, P.O. Box 7126, Albany, NY 12224.

New York State Department of Health Early Intervention Program (1999). Clinical Practice Guideline: Report of the Recommendations, Autism/Pervasive Developmental Disorders, Assessment and Intervention for Young Children. Publication #4215. Health Education Services, P.O. Box 7126, Albany, NY 12224. http://www.health.state.ny.us/nysdoh/eip/menu.htm

Rimland, B. (1994). Recovery from autism is possible. Autism Research Review International, 8, 3.

Satcher, D. (1999). Mental health: A report of the surgeon general. U.S. Public Health Service. Bethesda, MD. Available at: http://www.surgeongeneral.gov/library/mentalhealth/chapter3/sec6.html#autism

Simeonsson, R.J., Olley, J.G., & Rosenthal, S.L. (1987). Early intervention for children with autism. In M.J. Guralnick & F.C. Bennett (Eds.) The effectiveness of early intervention for at-risk and handicapped children. Orlando FL: Academic Press.

Volkmar, F., Cook, E.H., Pomeroy, J., Realmuto, G., & Tanguay, P. (1999). Practice parameters for the assessment and treatment of children, adolescents, and adults with autism and other pervasive developmental disorders. Journal of the American Academy of Child and Adolescent Psychiatry, 38(Suppl):32S-54S.


By permission of Eric V. Larsson, PhD. Refer requests for reproduction to original author.
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There is a website intended to assist parents in California in obtaining ABA under their insurance that may be of help to parents in other states confronting the same issues.


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