A Study Of Autism Spectrum Disorders Services, Systems . - Nmlegis.gov

NEW MEXICOSENATE BILL 197 –A STUDY OF AUTISMSPECTRUM DISORDERSSERVICES, SYSTEMS, ANDFINANCINGBACKGROUNDThe New Mexico Human ServicesDepartment (HSD) was directed by the NewMexico Legislature to “conduct a study ofautism spectrum disorders services, studythe systems that serve the populationaffected by autism spectrum disorders anddetermine the most appropriate fundingmechanisms, including health insurance,state disability insurance, developmentaldisability waivers, or autism waivers.”1 TheSecretary of HSD directed the MedicalAssistance Division (MAD) the task ofgathering information and convening a studygroup of consumers, state agencyrepresentatives, providers, and insurancecompanies to develop a report of the workgroup’s findings and recommendations to bepresented to the Legislative FinanceCommittee.WHAT ARE AUTISM SPECTRUMDISORDERS (ASD)?Autism Spectrum Disorders (ASD), alsoknown as Pervasive DevelopmentalDisorders (PDD), cause severe andpervasive impairment in thinking, feeling,and the ability to relate to others. ASD arecomplexneurologicaldisordersofdevelopment that onset in early childhood.These disorders are usually first diagnosedin early childhood and range from a severeform, called autistic disorders (through anumber of different subtypes), to a much1milder form, Asperger‘s syndrome.2 ASDaffect the functioning of the brain to causemild to severe difficulties, includinglanguage delays, communication problems,limited social skills, and repetitive and otherunusual behaviors.Nationally, ASD now affects an estimatedone in every 150 children across all racial,ethnic, and socioeconomic backgrounds.3ASD is more prevalent in males and affectsone in every 94 boys.4 The spectrum ofASD represents the fastest growing seriousdevelopmental disability in the UnitedStates.ASD is more common thanchildhood cancer, juvenile diabetes, andpediatric AIDS combined.5Although the etiology of ASD is unknown,experts believe there is more than one causeof ASD.6 Genetics appear to play a role,and there is growing scientific evidenceabout the role of environmental influences.Today, research continues to investigate theextent genetic and environmental factorscontribute to ASD.There is no known cure for these disorders.Experts agree that treatment should betailored to address the needs of theindividual, and no single intervention is bestfor every person with ASD. There is alsowidespread agreement that it is important for2National Institute of Public Health3Centers for Disease Control and Prevention,Morbidity and Mortality Weekly Report,Surveillance Summaries, vol. 56, no. SS-1, U.S.Department of Health and Human Services,Atlanta, Georgia, February 9, 2007.4Ibid.5Autism Speaks, 2006 Annual Report, page 46National Institute of Child Health and HumanDevelopment, “Autism Overview: What WeKnow,” U.S. Department of Health and HumanServices, May 2005, www.nichd.nih.gov.Senate Bill 1971

children with ASD to receive intensiveinterventions during early childhood.Research indicates that some interventionshave a high degree of efficacy for treatingcertain symptoms of ASD in some children.7Given intensive behavioral interventions,half of the individuals with ASD are morelikely to live at a high level ofindependence, as an adult with minimal helpfrom their families or other supportsystems.8 Efforts are underway to betterdefine for the field effective interventionsfor ASD and specific program elements ofinterventions so they can be replicatedsuccessfully in the home, at school, and inother community settings.ASD may seem like a modern disorder, butit is not. Some of the earliest publisheddescriptions of behavior similar to autismdate back to the 18th century. The disorders,however, did not have a name until themiddle of the 20th century.ASD are a lifetime disorder. Although someindividuals may mature and withinterventions, move out of the ASDdiagnosis, they will retain some elements ofthe overall interactions that are ASD-like.Today, hundreds of thousand children andadults continue to live with ASD.WHAT MAKES ASD UNIQUE?The three core deficit areas that comprise adiagnosis of ASD create challenges in alllife areas. These three areas are: (1) socialinteraction; (2) verbal and nonverbal7Rogers, Sally J. and Laurie A. Vismara,“Evidence Based Comprehensive Treatments forEarly Autism,” Journal of Child and ClinicalPsychology, University of California, Davis,M.I.N.D. Institute.8Howlin, P. Goode, SI. Hutton, Jane, Rutter, M,“Adult Outcome for Children with Autism,”Journal of Child Psychology and Psychiatry, 45,pp. 212-229, 2004.communication; and (3) exhibit repetitivebehaviors or interests.Functional oradaptive behaviors are difficult for anindividual with ASD to acquire because of alack of social understanding, delayed anddisordered communication abilities, andrigid behaviors. Individuals with ASD oftenprocess sensory information differently thanindividuals without these disorders. Typicalenvironmental sights and sounds are oftenoverwhelming for a person with ASD andtrigger behavioral outbursts or shutdown.Emotional regulation can be of concern.Families with autistic children report thattheir children experience difficulties fallingand staying asleep. These core impairmentsin the social, communication, and behaviorareas combined with sensory processingdifferences, difficultly with emotionalregulation and sleep deprivation createuntenable stress for individuals with ASDand their families.As children with ASD mature, communitysupport becomes critical. ASD will affectmost of our basic service systems. Forexample, planning for involvement ofpersons with ASD with the lawenforcement/court/corrections systems asvictims, witnesses, or perpetrators of crimeis critical. When approached by a lawenforcement officer, an individual with ASDmay engage in self-injurious behaviors, walkaway from sirens, flashing lights, avoid eyecontact, and not respond to repeatedcommands.This could lead to tragicoutcomes for all concerned and training isnecessary to avert these potentialconsequences.Despite a large body of research looking atan individual with ASD’s quality of life, anindividual’s ability to achieve independencecannot often be predicted because everyindividual with ASD is unique. Similarly,each individual with ASD respondsdifferently to interventions. This createschallenges in designing systems of care andsupport due to complexity of the task.2

WHAT ARE THE NUMBERS?Over the years, statistics regarding ASDhave fluctuated given changes in thedefinition of “what is ASD?”9 This has9The definition changes that have occurred are:1956 - Kanner critera: lack ofaffective contact: desire for sameness;fascination with objects; mutism or noncommunicative language before 30 months ofage;1978 - Rutter criteria: emphasizeddelayed and unusual social and languagedevelopment and early onset and unusualbehaviors;1980 - DSM III: differentiated autismfrom schizophrenia (not a psychotic disorder, butdevelopmental);1987 - DSM III-R: concept of PDDcontinued; autism and PDD-NOS defined;1992 - ICD-10: greatly expandedPDD concept – autism; atypical autism; Rettsyndrome; other childhood disintegrativedisorder; overactive disorder; associated withMR and stereotyped movements; Asperger’ssyndrome; other PDDS; PDD unspecified;1994 - DSM IV and DSM IV-TR:also expanded PDD concept – autistic disorder;Asperger’s syndrome; Rett syndrome; CDD;PDD-NOScaused confusion and has hampered statesfrom gathering useful and identifiableinformation. To further complicate thematter, as the definition of ASD haschanged, individuals that are now adultsmay not have qualified for an ASDdiagnosis when they were children. Inaddition, many pediatricians and specialeducation professionals were not familiarwith ASD diagnoses and often incorrectlydiagnosed children.Currently, theAmerican Academy of Pediatricians (AAP)recognizes that its professionals may still beoperating under the wrong assumptionsabout ASD. AAP has developed a “tool kit”for its members to provide the knowledgeand information to correctly diagnosechildren.10 Great care must be taken in theselection of the interdisciplinary team calledto determine an ASD diagnosis.The adult world is vastly different from thechildren’s and riddled with inconsistencies.Many physicians are unaware that a numberof their patients fit the current definition ofASD. The process of determining if anadult has ASD requires a verifiablechildhood history of ASD behaviors beforeage 21. Physicians that are unfamiliar withASD often tell their patients, “you can’thave ASD; you can talk and hold a job.”The stigma of always equating the disabilityof mental retardation with ASD is simplynot correct. Though a number of individualswith ASD have co-occurring mentalretardation, many do not and are able tofunction in society, for example, by holdingdown a job and attending post-secondaryinstitutions.See generally,www.cdc.gov/ncbdd/autism/overview changesdiagnostic.htm10www.aap.org Caring for Children withAutism Spectrum Disorders: A ResourceToolkit for Clinicians, 79.95 non-members; 69.95 members3

Gathering effective information or thesurveillance of ASD has become aninternational dilemma. Attempting to findsome way to estimate the number of adultsthat have ASD to determine if theprevalence rate has truly increased does notexist.Information in school or othermedical charts yield little insight indetermining the number of unidentifiedASD using “historical” information. Thislack of information presents challenges indesigning a system of care for adults, as the“correct” number of ASD individuals ispresently unknown. For both children andadults, the knowledge base about thedisorders and lack of available qualifiedprofessionals able to diagnose ASDcontinues to cause us to rely upon estimatesrather than verified numbers.The Centers for Disease Control andPrevention (CDC), through its surveillancesystem, has what is considered the mostaccurate picture of the prevalence rate ofindividuals living in the United States withASD. New Mexico does not have theinfrastructure in place to either support ornegate the findings of the CDC. Using the 1in 150 statistic and the New Mexico PublicEducation Department’s (NMPED) 20062007 child counts, New Mexico cananticipate on an annual basis, over 850 ASDdiagnosed cases from birth to 5 years of ageand 2,100 ASD diagnosed children, K-12thgrade.Therefore, approximately 3,000children will be diagnosed with ASD frombirth to 18 years of age. The NMPED,Special Education records the followingchildren’s count percentages for the specialeducation exceptionality of autism asfollows:The CDC estimates that 1 in 150 children isthought to have an autism spectrumdisorders.Other estimates show thealarming rate and projections of ASD: 1 in 150 children are diagnosed withautism today, compared to 1 in10,000 in 1993;Autism is the fastest-growingserious developmental disorder inthe United States;1 in 94 boys is on the autismspectrum;Boys are four times more likely tohave autism than girls;67 children are diagnosed each day;A new case is diagnosed almostevery 20 minutes;Autism receives less than 5% of theresearch funding of many lessprevalent childhood diseases;More children are diagnosed withautism than with pediatric AIDS,juvenile diabetes, and childhoodcancer, combined;Autism costs the nation over 90billion per year, a figure that isexpected to double in the nextdecade;There is no medical detection orcure for autism112004-2005 to 2005-20063 – 5 year olds25% increase6 – 21 year olds19% increaseCOMPARING 2005-2006 DATA TO2003-20053 – 5 year old78% increase6 – 21 year olds38% increaseBased on these growth percentages, theState can forecast an additional 400 childrenwith a diagnosis of ASD each school year.WHAT ARE OTHER STATESDOING?MAD, through its Benefits Services Bureau,began researching other states that cover orare proposing to cover through state11Autism Speaks, 2006 Annual Report andcitations therein.4

legislation, or mandated autism spectrumdisorders health insurance. Concurrently, astudy began to review the types of autismspectrum disorders services offered bystates, through a variety of fundingmechanisms.Across twenty-two (22) states researched,there were few common factors.12 States donot share consistent terminology for autismspectrum disorders. At least six (6) differentterms are used or combinations of terms areused to define what each state considers“autism spectrum disorders.”13 Added tothis, autism is classified as a developmentaldisability by some, a severe or disablingmental illness by others, and referred byother states as a neurological disorder. Inaddition, terms change depending on the ageof the individual seeking or receivingservices.14 The inconsistency in terminologyhas, at times, been used as ways forindividuals to access health benefit services.These terms speak to the philosophy of thestate’s system of care and delivery ofservices to individuals with ASD. To thatend, states house their ASD services in amultitude of departments, from education tomental health.15 The Funding Work Group’s12Alabama, California, Connecticut, Idaho,Illinois, Indiana, Iowa, Kansas, Kentucky,Maine, Maryland, Minnesota, Mississippi,Montana, New Jersey, New York, Oregon,Pennsylvania, South Carolina, Tennessee,Virginia, Wisconsin13Mental and Nervous Conditions,Biologically-based Developmental Disability,Neurological Disorder, Biologically-basedMental Illness, Pervasive DevelopmentalDisorders, Chronic NeurodevelopmentalDisorder, Mentally Disabled, Serious EmotionalDisorders-children, Severe Mental Illness-adults14Montana separates children from adults bylisting ASD under Serious Emotional Disordersfor children and Severe Mental Illness for adultsefforts were placed ‘on hold’ with therelease of Governor Richardson’s proposedhealth care reform – Health Solutions NewMexico. The 2008 State Legislature andGovernor Richardson will debate andprovide direction around issues of mandatedhealth coverage in a variety of areas,including ASD coverage. Senate Bill 197Study Group proposed to continue theFunding Work Group’s efforts into 2008.EVIDENCE-BASED PRACTICESARE THE KEY FOR TREATMENTOF AUTISM SPECTRUMDISORDERSThere is no cure for autism. The closestscience has come to combating the coresymptoms of autism is a cross-section ofbehavioral-based interventions that addressthe specific needs of each individual. Manyof these interventions have a range ofscientific backing supporting their validityand efficacy for individuals with ASD;however, no one is certain how individualswill respond to which of these interventions.Extensive research conducted in behavioraltherapies demonstrates that they areeffective and are commonly referred to as“evidence-based practices.”Evidence-based practices are founded inapplied behavioral analysis and positivebehavioral supports. These evidence-basedpractices include, but are not limited to:naturalistic learning approaches; incidentalteaching; positive behavioral supports;assistive technology; social skills training;and the use of visual structure and functionalroutines.16 Regardless of the setting (school,Welfare, Department of Public Welfare,Department of Human Services, Family andSocial Services Administration1615Department of Social and RehabilitationServices, Department of Health and FamilyServices, Department of Education, Departmentof Public Aid, Department of Health andLord, Catherine and James McGee, eds.“Educating Children with Autism”, Chapter 16Conclusions and Recommendations, pp. 211229, National Academy of Sciences Committeeon Educational Interventions for Children with5

home, or community), the research supportsthe implementation of a range of evidencebased practices.17 Moreover, the scientificdata supports a complex approach to thetreatment of individuals with ASD. Basedon this research, it is clear that professionalsmust treat not just one specific aspect ofautism (i.e., social, communication orsensory deficits, challenging behaviors orrestricted, repetitive behaviors), insteadtreatment must affect other areas of autisticdeficits and the individual’s overall skilldevelopment.18Definition, Appendix A.The servicedefinition is for children 21 years of age oryounger. Due to the lack of research anddevelopment of evidence-based practices, itis recommended that further study becontemplated for an adult service definitionfor ABS.One of the cornerstones to evidence-basedtreatments is the use of applied behavioralanalysis (ABA) which allows professionalsto measure the effectiveness of theirinterventions, track the progress of theindividual to obtain established goals, and toprovide accountability for treatmentsystems. Therefore, the treatments of autismspectrum disorders for individuals at any ageare complex and necessitate a highly trainedand skilled practitioner to developcomprehensive treatment approaches thatutilize a range of evidence-based practices tomaximize the efficacy of intensivebehavioral intervention (IBI) programs.Given such a comprehensive approach, thatincludes family members and caregivers asprimary team members, intensive behavioralinterventions are highly effective inaddressing the core deficits of ASD,improving adaptive skills, and improving theindividual’s and family’s quality of life.Autism spectrum disorders are complexdisorders with variable and fluctuatingmanifestations.Nevertheless, progressmade in early detection techniques nowallows for earlier diagnosis of thesedisorders, frequently before a child’s secondor third year of life.19Typically fullspectrum autism can be diagnosed earlierthan other types of ASD, such as Asperger’ssyndrome and Pervasive DevelopmentalDisorder, Not Otherwise Specified.The Senate Bill 197 Study Group hascreated a draft “Adaptive Skills Building(ABS)” service definition designed withthese evidence-based practices. See, ABSAutism, National Academy Press, Washington,D.C., 200117Rogers, 1998. “Empirically supportedcomprehensive treatments for young childrenwith autism.” Journal of Clinical ChildPsychology. 27. 168-17918Rogers, 1998.EARLY IDENTIFICATION ANDINTERVENTION ARE THE KEYCOMPONENTS TO BUILDING ASUCCESSFUL MODEL OF CAREDespite these advances, it is estimated that,in the United States, only fifty percent(50%) of children with ASD are diagnosedbefore they enter kindergarten, which istypically at age five.20 Further, there is19Strock, Margaret, “Autism SpectrumDisorders (Pervasive Developmental Disorders),NIH Publication no. NIH-04-5511, NationalInstitute of Mental Health, National Institutes ofHealth, U.S. Department of Health and HumanServices, Bethesda, Maryland, 2004; andKoegel, R.L. and L.K. Koegel, “PivotalResponse Treatments,” Baltimore, Maryland,Paul H. Parks Publishing Company, 2006.20Strock, Margaret, “Autism SpectrumDisorders (Pervasive DevelopmentalDisabilities), NIH Publication no. NIH-04-5511,National Institute of Mental Health, NationalInstitutes of Health, U.S. Department of Healthand Human Services, Betheda, Maryland, 2004;and Centers for Disease Control and Prevention,“Can Developmental Screening Provider EarlyDetection?”, U.S. Department of Health and6

evidence that late diagnosis occurs morefrequently among children of lowsocioeconomic status, children in ruralcommunities,HispanicandAfricanAmerican children.21Current best practices indicate thateffectively screening all children across awide range of developmental domains iscrucial to the early detection of childrenwith ASD. Both the American Academy ofPediatrics (AAP) and the AmericanAcademy of Neurology recommend thatdevelopmental surveillance, using validatedscreening instruments, should occur at wellchild visits for children from birth throughschool-age.22Experts indicate, “goodscreens make a correct decision at least 70percent to 80 percent of the time.”23 Thesescreens are intended to identify child

autism spectrum disorders services, study the systems that serve the population affected by autism spectrum disorders and determine the most appropriate funding mechanisms, including health insurance, state disability insurance, developmental disability waivers, or autism waivers."1 The Secretary of HSD directed the Medical