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Medical Policy | ||
| Subject: Treatment of Autism, Asperger’s Syndrome, Rett Syndrome, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder Not Otherwise Specified (NOS) | |||
| Policy #: BEH.00004 | Current Effective Date: | 08/23/2007 | |
| Status: Revised | Last Review Date: | 08/23/2007 | |
Description/Scope This policy addresses a wide variety of pharmacotherapeutic, behavioral, educational, medical, and rehabilitative treatments and therapies used to treat Autism, Asperger’s Syndrome, Rett Syndrome, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder (NOS). Note: Please see the following documents which also address these conditions: Policy Statement Medically Necessary: Pharmacotherapy for management of comorbidities related to autism, Asperger’s syndrome, Rett syndrome, childhood disintegrative disorder and pervasive developmental disorder not otherwise specified (NOS) is considered medically necessary when required for the treatment of mood disorders or other conditions where the potential for patients to harm themselves or others is present, or when such treatment would otherwise be considered medically necessary. Behavior modification for management of behavioral symptoms related to autism, Asperger’s syndrome, Rett syndrome, childhood disintegrative disorder and pervasive developmental disorder not otherwise specified (NOS) is considered medically necessary when required for the management of behaviors where the potential for patients to harm themselves or others is present, or when such treatment would otherwise be considered medically necessary. Interventions to improve verbal and nonverbal communication skills for patients with autism, Asperger’s syndrome, Rett syndrome, childhood disintegrative disorder and pervasive developmental disorder not otherwise specified (NOS) are considered medically necessary. Physical and occupational therapy for comorbid physical impairments in patients with autism, Asperger’s syndrome, Rett syndrome, childhood disintegrative disorder and pervasive developmental disorder not otherwise specified (NOS) is considered medically necessary when such treatment would otherwise be considered medically necessary. Medical therapy or psychotherapy, as indicated for comorbid medical or psychological conditions is considered medically necessary when such treatment would otherwise be considered medically necessary. Investigational/Not Medically Necessary: The following treatments or therapies are considered investigational/not medically necessary for the treatment of autism, Asperger’s syndrome, Rett syndrome, childhood disintegrative disorder and pervasive developmental disorder not otherwise specified (NOS):
Rationale
Autism, Asperger’s syndrome, Rett's syndrome, childhood disintegrative disorder, and dervasive developmental disorder (NOS) are complex and multifaceted conditions for which there is no known specific etiology, although there is evidence of a genetic etiology in autism The impairments of these conditions are generally severe, and, given the uncertainty around the cause(s) of these disorders, treatments are not directed at the core pathology, but at the co-morbid medical and behavioral conditions. The medically necessary treatments have validity as components of treating the co-morbidities, and are evidence-based. Those treatments deemed Investigational/Not Medically Necessary lack sufficient evidence as to their relevance, accuracy and/or reliability in improving the pathological manifestations of autism, Asperger’s syndrome, Rett's syndrome and pervasive developmental disorders. There has been particular interest and controversy around intensive behavioral therapy techniques for autism such as that described by Lovaas, O.I. in 1987. He reported on a group of 19 patients younger than 46 months of age who received an intensive form of behavioral therapy involving 40 hours per week of one-on-one therapy and compared them to control groups receiving either less intense (less than 10 hours of one-to-one therapy per week) or no intensive therapy. The therapy consisted of operant treating techniques in which the child was given a task, and based on the child's response, received either reinforcement or “punishment.” The treatment was provided by trained student therapists working together with the child's parents who were also trained in the techniques used. Treatment continued for two years or more, and outcomes included measurement of IQ and level of functioning in the school system. According to Lovaas (1987) and later McEachin, et al. (1993), subsequently, 47% (later 42%) of the treated group were functioning well in an educational setting (essentially normally), compared to 2% of the control group. Later reports of adaptive behavior scores favored the treatment group also. However, there has been considerable and widespread criticism of Lovaas, McEachin, and other studies of this form of therapy based on analyses that determined the studies were flawed or weak based on a number of factors. These included: lack of clear standard diagnostic criteria at study entry, inadequate randomization which in some cases was based on the availability of therapists, and facilities, selection bias, small sample sizes, unrepresentative control groups, inadequate documentation of treatment intensity, different assessment tools used at baseline, limited outcome measures (e.g., IQ) with no documentation of the skills for normal functioning, social interactions, communication, etc. Also the Lovaas study compared different intensities of the same treatment rather than comparing different therapies. In addition, results from other investigators did not corroborate the extent of improvement noted by Lovaas, and again, suffered from being methodologically weak, with criticisms that they were too small, too short in duration, with lack of standardized diagnostic instruments, and IQ measurements that were based mainly on non-verbal abilities. What is not frequently discussed by advocates of this type of therapy is that the authors of the studies they quote usually acknowledge significant limitations in their publications. For example Sheinkopf and Siegel (1998) state, ...”we have no reason to conclude that it [their treatment intervention] is more effective than anything other than standard, low intensity school-based interventions.” They also point out that there was no random assignment to the two treatment options; the parents made that determination. The authors also did not observe the therapy being provided in the home, so they really do not know what therapies were actually conducted. In one study often cited by advocates, Sallows and Graupner (2005), state: “The number of weekly hours of treatment seemed less related to outcome than did pretreatment variables.” What they found was that their study group could be divided into “rapid learners” and “moderate learners.” These were determined based upon pre-treatment characteristics of the children (primarily the ability to imitate) and were not related to the treatment intervention. The rapid learners did better with the behavioral intervention than did the moderate learners, regardless of the type of intervention they received. In describing the progress of the rapid learners they state: “However, high hours and intensive supervision were not sufficient to make up for low levels of pretreatment skills.” Thus, even when children classified as moderate learners were provided with high-intensity therapy, little benefit was derived. In July, 2000, The British Columbia Office of Health Technology Assessment performed a critical appraisal of Lovaas and McEachin's publications, and concluded that there was insufficient scientifically valid evidence of effectiveness of the therapy to establish a relationship between the amount of any form of early comprehensive treatment program and overall outcome. Also that data was inadequate to establish the degree to which this form of treatment results in children achieving “normal” functioning however defined A Position Statement from the Canadian Pediatric Society published in Pediatric Child Health, April 2004, points out similar flaws in the studies and concluded there was no evidence for adopting a single autism treatment program as the gold standard. In 2001, the American Academy of Pediatrics, in regard to intensive behavioral treatment, concluded that more replicative studies with improved methodology are needed before it can be recommended for all young children. In addition, the American Academy of Pediatrics, Committee on Children with Disabilities in a paper entitled “The Pediatrician's Role in the Diagnosis and Management of Autistic Spectrum Disorder in Children” published in Pediatrics 2001 stated that “There are no treatment guidelines for ASD (Autistic Spectrum Disorders) published. Although there is growing agreement among experts that early and sustained intensive behavioral and education intervention may improve overall outcomes, there is less agreement regarding the relative effectiveness of specific intervention strategies or the degree to which they should be delivered.” Finally, a Hayes assessment of the Lovaas treatment for autism published in 2003 found insufficient evidence to establish a relationship between intensity or duration of the intervention and degree of improvement in the areas of behavior, language skills, and cognitive function. Nor did it find evidence that would define specific criteria to select patients who might benefit from intensive intervention. Therefore, based on inadequate scientific evidence together with expert analyses, early intensive behavioral therapy programs such as Lovaas, have not been convincingly demonstrated to improve health outcomes for children with autism. Background/Overview Description of Pervasive Developmental Disorders (PDD) The term pervasive developmental disorders (PDD) refers to a group of disorders characterized by delays in the development of socialization and communication skills which are often accompanied by cognitive and language delays. Parents may note symptoms as early as infancy, and the typical age of onset is before 3 years of age. Symptoms may include problems with using and understanding language; difficulty relating to or reciprocating with people, objects, and events; lack of mutual gaze or inability to attend events conjointly; unusual play with toys and other objects; difficulty with changes in routine or familiar surroundings, and repetitive body movements or behavior patterns. Autism is the most characteristic and best studied PDD. Other types of PDD include Asperger’s syndrome, Rett's sSyndrome, and childhood disintegrative disorder (CDD). CDD is a condition similar to autism, but with onset after the age of 3 and is characterized by a period of clearly normal development prior to onset of severe developmental regression and onset of behaviors suggestive of autism. Children with PDD vary widely in abilities, intelligence, and behaviors. Some children do not speak at all, others speak in limited phrases or conversations, and some have relatively normal language development. Repetitive play skills, resistance to change in routine and inability to share experiences with others, and limited social and motor skills are generally evident. Unusual responses to sensory information, such as loud noises and lights, are also common. The causes of PDDs are unknown. It is known that they are due to biological and neurological problems in the brain, but other possible causes under investigation including genetic mutations, food allergies, excessive amounts of yeast in the digestive tract, and exposure to environmental toxins. It's important to note that all children can exhibit unusual behaviors occasionally, or they can seem shy around others sometimes - without having a PDD. What sets children with PDDs apart is the consistency of their unusual behaviors. Symptoms of the disorder have to be present in all settings - not just at home or at school - and over considerable periods of time. With PDD, there's a lack of social interaction, impairment in nonverbal behaviors, and a failure to develop normal peer relations. A child with a PDD tends to ignore facial expressions and may not look at others; other children may fail to respect interpersonal boundaries and come too close and stare fixedly at another person. Description of Autism Autism is a complex developmental disorder that affects the brain's development in the areas of social interactions and communication. Symptoms appear in the first 3 years of life, although diagnosis frequently is not made until much later. Symptoms of autism vary significantly in severity, but there are several core features to the condition, including gross and sustained impairment in reciprocal social interactions, impaired verbal and nonverbal communication, and restricted or repetitive patterns of behavior. Most parents of autistic children suspect that something is wrong by the time the child is 18 months old and seek help by the time the child is 2. However, some children with autism appear normal before age 1 or 2 and then suddenly "regress" and lose language or social skills they had previously gained. This is called the regressive or disintegrative type of autism and is seen in a minority of cases. People with autism may perform repeated body movements, show unusual attachments to objects or have unusual distress when routines are changed. Individuals may also experience sensitivities in the senses of sight, hearing, touch, smell, or taste. Such children, for example, will refuse to wear "itchy" clothes and become unduly distressed if forced because of the hyper-sensitivity of their skin or hyper-reactivity to other sensations. The exact causes of autism are unknown although genetic factors are strongly implicated, The exact number of children with Autism is not known, but estimates suggest that roughly 1 in 1,000 children are affected. Autism affects boys 3 to 4 times more often than girls; girls with autism tend to be more severely effected. Description of Asperger's Syndrome Like autism, Asperger’s syndrome (AS) is a developmental disorder characterized by impairment in communication skills, as well as repetitive or restrictive patterns of thought and behavior, but without significant language or cognitive delay. Parents usually sense there is something unusual about a child with AS by the time of his or her third birthday, but typically clinical concern does not arise until the time the child enters a preschool setting. Unlike children with autism, children with AS retain their early language skills, although their presentation is usually abnormal. Higher cognitive function tends to be preserved in patients with AS. Motor development delays – crawling or walking late, clumsiness – are sometimes the first indicators of the disorder. In addition to the preservation of some aspects of language functioning, another of the most distinguishing symptom of AS is a child's obsessive interest in a single object or topic to the exclusion of any other. Children with AS want to know everything about their topic of interest and their conversations with others will be about little else. Their expertise in some areas of interest, high level of vocabulary, and formal speech patterns make them seem like “little professors.” Other characteristics of AS include repetitive routines or rituals; peculiarities in speech and language; socially and emotionally inappropriate behavior and the inability to interact successfully with peers; problems with non-verbal communication; and clumsy and uncoordinated motor movements. Children with AS usually have a history of developmental delays in motor skills such as pedaling a bike, catching a ball, or climbing outdoor play equipment. They are often awkward and poorly coordinated with a walk that can appear either stilted or bouncy. The incidence of AS is not well established, but experts in population studies conservatively estimate that two out of every 10,000 children have the disorder. Boys are three to four times more likely than girls to have AS. Although diagnosed mainly in children, AS is being increasingly diagnosed in adults who seek medical help for mental health conditions such as depression, obsessive-compulsive disorder (OCD), and attention deficit hyperactivity disorder (ADHD). They should have a childhood history consistent with the diagnosis. No studies have yet been conducted to determine the incidence of AS in adult populations. Description of Rett Syndrome Rett syndrome is a disorder of the nervous system that leads to regression in development, especially in the areas of expressive language and hand use. In most cases, it is caused by a genetic mutation. It occurs almost exclusively in girls and may be misdiagnosed as autism or cerebral palsy. Seventy-five percent of Rett syndrome cases have been linked to a specific genetic mutation on the x chromosome. This gene contains instructions for creating methyl-CpG-binding protein 2 (MeCP2), which regulates the manufacture of various other proteins. Mutations in the MeCP2 gene causes these other proteins to be produced incorrectly, which damages the maturing brain. Studies link mutations in this gene. Most cases of the mutation arise spontaneously without any traceable cause. However, there also seem to be some clusters within families and certain geographic regions, for example Norway, Sweden, and Northern Italy. A child affected with Rett syndrome normally follows a standard developmental path for the first 5 months of life. After that time development in communication skills and motor movement in the hands seems to stagnate or regress. After a short period stereotyped hand movements, gait disturbances, and slowing of the rate of head growth become apparent. Other problems may also be associated with Rett syndrome, including seizures, disorganized breathing patterns while awake and apraxia/dyspraxia (the in ability to program the body to perform motor movements). Apraxia/dyspraxia a key symptom of Rett syndrome and it results in significant functional impairment, interfering with body movement, including eye gaze and speech. Description of Childhood Disintegrative Disorder The essential feature of childhood disintegrative disorder (CDD) is a marked regression in multiple areas of functioning following a period of at least 2 years of apparently normal development. Apparently normal development is reflected in age-appropriate verbal and nonverbal communication, social relationships, play, and adaptive behavior. After the first 2 years of life (but before age 10 years), the child has a clinically significant loss of previously acquired skills in at least two of the following areas: expressive or receptive language, social skills or adaptive behavior, bowel or bladder control, play, or motor skills. Individuals with this disorder exhibit the social and communicative deficits and behavioral features generally observed in autism. There is qualitative impairment in social interaction and in communication, and restricted, repetitive, and stereotyped patterns of behavior, interests, and activities. The disturbance is not better accounted for by another specific pervasive developmental disorder or by schizophrenia. Description of Technology The diagnosis of PDD can be complex and difficult due to the diversity of the presentation of symptoms and their severity. Due to the multitude of possible causes, and potential confusion with other conditions, many tests exist that may or may not be appropriate. It is vital that parents of children suspected of having a PDD seek early diagnosis and care for their child to increase any potential benefits of treatment. Description of Technology The treatment of PDDs may take many different approaches, focusing on one of more aspects of the condition being treated. There is no single treatment that has consistently demonstrated benefit at the core symptoms of these disorders. Family therapy is generally supported as a valuable treatment because it offers emotional support and guidance to parents who will contend with a myriad of services to assist their child. Other treatments/interventions (such as speech and language therapy) are of greatest potential benefit in the pre-school child, and of very limited value in the older child/adolescent, so that the age of the child is also a factor in determining the appropriateness and necessity of a given treatment. Individual therapy using social story technique and behavioral cue coaching are very useful for the older child/adolescent with Asperger’s syndrome and can make a difference in that child’s acceptance by others. Finally, because of our limited understanding of the PDDs, many innovative, experimental, and investigational treatments exist. Until such time as these treatments achieve recognition as evidenced-based, they are not considered to be medically necessary. Definitions
Asperger's Syndrome: a developmental disorder that affects the parts of the brain that control social interaction and communications Autism: a developmental disorder that affects the parts of the brain that control social interaction and verbal and non-verbal communication. Behavior Modification: a therapy type that is designed to create new behavior patterns in people through intensive and frequent feedback using a reward, non-reward system. Childhood Disintegrative Disorder: a developmental disorder characterized by marked regression in multiple areas of functioning following a period of at least 2 years of apparently normal development. Cognitive Rehabilitation: a proposed treatment to pervasive developmental delay syndromes involving psychological therapy Echolalic: a characteristic of being repetitive of a sound originating from somewhere/someone else without communicative intent, as opposed to originating uniquely from a person. Educational Interventions: interventions designed to work on a patients' ability to communicate though speech, sign language, writing and other methods Elimination Diets: a proposed treatment to pervasive developmental delay syndromes involving specialized diets that omit specific foods for food groups such as gluten and milk Facilitated Communication: a method of communication using aids or alternative to speech such as sign language, flashcards, communication boards, etc. Fragile X: a genetic condition that results in significant mental retardation Immune Globulin Infusion: a proposed treatment to pervasive developmental delay syndromes involving the injection/infusion of immune substances known as immune globulins into the body Lovaas Therapy (Also known as applied behavior analysis (ABA), intensive behavioral intervention (IBI), discretetrial training, early intensive behavioral intervention (EIBI), or intensive intervention programs): a proposed treatment to pervasive developmental delay syndromes involving the use of intensive one-on-one structured training involving operant conditioning to elicit or control specific behaviors Music Therapy and Rhythmic Entrainment Interventions: a proposed treatment to pervasive developmental delay syndromes involving the use of music or rhythmic sounds such as from drums Pervasive Developmental Disorder (PDD): a group of developmental disorders, including autism, Asperger's syndrome, and Rett syndrome, that are characterized by dysfunction in parts of the brain controlling social interaction and communications, among others Phenylketonuria: a metabolic disorder caused by the bodies inability to metabolize the amino acid phenylalanine; this condition, if undiagnosed and managed may lead to mental retardation Rett Syndrome: a developmental disorder that affects the parts of the brain that control social interaction, communications, and motor function Secretin Infusion: a proposed treatment to pervasive developmental delay syndromes involving the injection/infusion of the hormone secretin into the body Vision Therapy: a proposed treatment to pervasive developmental delay syndromes that involves focusing a patient's attention on a single visual stimuli in an attempt to improve their attention span and ability to mentally focus their attention Coding
The following codes for treatments and procedures applicable to this policy are included below for informational purposes. Inclusion or exclusion of a procedure, diagnosis or device code(s) does not constitute or imply member coverage or provider reimbursement policy. Please refer to the member's contract benefits in effect at the time of service to determine coverage or non-coverage of these services as it applies to an individual member. When services may be Medically Necessary when criteria are met: CPT
HCPCS
ICD-9 Procedure
ICD-9 Diagnosis
When services are Investigational/Not Medically Necessary: For the following procedure and diagnosis codes; or when the code describes a procedure indicated in the Policy section as investigational/not medically necessary.
CPT
HCPCS
ICD-9 Diagnosis
References
Peer Reviewed Publications:
Government Agency, Medical Society, and Other Authoritative Publications:
Web Sites for Additional Information
Index
Alternative Communication Policy History
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Federal and State law, as well as contract language, including definitions and specific contract provisions/exclusions, take precedence over Medical Policy and must be considered first in determining eligibility for coverage. The member's contract benefits in effect on the date that services are rendered must be used. Medical Policy, which addresses medical efficacy, should be considered before utilizing medical opinion in adjudication. Medical technology is constantly evolving, and we reserve the right to review and update Medical Policy periodically. No part of this publication may be reproduced, stored in a retrieval system or transmitted, in any form or by an means, electronic, mechanical, photocopying, or otherwise, without permission from the health plan. ©CPT Only - American Medical Association |