Richest—you can see by the list of services Additionally, this program is a 2 gen program providing services to f including bp, fp, ap, kp, relatives for pt, pc and in NYS—parent support gps and respite care Program is also easy to access b admin by DOH rather than school dist And elig is functional rather than categorical like spec ed—look for diagnosis like MR but to delays in phy, social/emot, cogn, speech, self-help.

Ensuring that c’s h, d and mh needs are addressed has long been law. Under MA all fc elig for MA and read slide

SCANNING THE SPECTRUM: THE LEGAL AND POLICY CHALLENGES FOR CHILDREN WITH AUTISTIC SPECTRUM DISORDERS (ASD) Sheryl Dicker,J.D Assistant Clinical Professor of Pediatrics and Family and Social Medicine Einstein College of Medicine Children’s Hospital at Montefiore Rose F. Kennedy UCEED

Low incidence to high incidence disability Past- Autism was believed to be rare Past- 1 in 2500 children had autism (Autism Speaks website) Today- 1 in 150 children have ASD(CDC 2008) Today-1 in 100(Pediatrics 2009) Today- Prevalence raises new policy and legal questions concerning children with ASD

Plan for today Trace policy concerning ASD Examine the law and ASD Review the court decisions concerning ASD Dissect pending legislation

ASD in the l970s Low- incidence ‘ handicap’ Few community programs; institutionalization Passage of Education for All Children’s Act in l975 Guaranteeing a Free, Appropriate Public Education Priority– children with ‘severe’ handicaps

EHA l975 ASD doesn’t appear in law Not defined or referred to in law or regulations Practice- included under Severely Emotionally Disturbed OR health impaired Harkens back to “childhood schizophrenia

Part C and ASD Passed as amendment to EHA in l986 Now Part C-Early Intervention for Infants and Toddlers with Disabilities No mention of ASD Procedures under Part B apply(parental consent, evaluation, due process) EI is not special education Established two-generation program for children and parents—broadly defined Eligibility: “At risk”(6 states ); Delays (five domains); or conditions with high probability of resulting in delays (could include ASD)

Early Intervention Services Assistive technology services and devices Parent training and counseling Respite Home visits and support groups Medical services for diagnostic purposes Nursing services Nutrition services Occupational therapy Physical therapy Psychological services Service coordination Social work services Special instruction Speech-language therapy Vision services Hearing services Transportation sand related costs

1990 EHA Amendments Changes law to IDEA Adds Autism to Definition First time separate definition in regulations Most children still are Severely Emotionally Disturbed or Health Impaired

Autism Definitions IDEA Definition Autism means a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age 3, that adversely affects a child's educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences. Autism does not apply if a child's educational performance is adversely affected primarily because the child has an emotional disturbance. A child who manifests the characteristics of autism after age 3 could be identified as having autism if the criteria of the first paragraph are satisfied. DSM IV Definition A developmental disorder, the criteria for which is: qualitative impairment in social interaction qualitative impairments in communication restricted repetitive and stereotyped patterns of behavior, interests, and activities Delays or abnormal functioning in the above areas must begin prior to age 3. The disturbance is not better accounted for by Rhett’s Disorder or Childhood Disintegrative Disorder.

Pervasive Developmental Disorder Not Otherwise Specified This category should be used when there is a severe and pervasive impairment in the development of reciprocal social interaction associated with impairment in either verbal or nonverbal communication skills or with the presence of stereotyped behavior, interests, and activities, but the criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypal Personality Disorder, or Avoidant Personality Disorder. For example, this category includes "atypical autism" - presentations that do not meet the criteria for Autistic Disorder because of late age at onset, atypical symptomatology, or subthreshold symptomatology, or all of these.

ASD case law >700 cases in last 10 years under IDEA(majority in last 5 years) Key issues Who is eligible child with autism? ( Who?) What special education and related services must be provided? ( What?) Where must these special education and related services be provided? (Where?) How are those services to be paid? (How?)

Education litigation—Who is eligible as children with autism? Meet definition of IDEA not DSM Differences– onset at 3 (DSM); not primary ED; adversely affects education (IDEA) Problem because of history of viewed as ED and overlap of behavior problems NY - use of IDEA definition important ; can even be ‘autistic like’ symptoms if describe as defined by IDEA At least one case– Current symptoms

Who is eligible? Adversely affects child’s education performance is second prong under IDEA Rowley - U.S Supreme Court case Grade or age appropriate Look to other factors that are central to ASD- adaptive skills; social skills; group activities; physical education Prob- ED exemption since so many have beh/emot issues which are part of ASD

What services are children with ASD eligible to receive? Heavy case law reliance on IEP/IFSP process Special Education and Related Services must be calculated to provide child with educational (some cases add meaningful) benefit (speech, OT, special instruction, social skills, psy)NOT BEST Courts refuse to accept one method though disallow rejection policy (cases mostly involve ABA) Issues - how many hours per day; summer school program; after school program (Deal v. Hamilton County 2004) NY EI guidelines recommends AppliedBehavioralAnalysis-intensive reward system

How many hours of services ABA—often recommend 20-40 hours week Case law replete with hour controversy;research still doesn’t answer question’ New research: 1st random assignment/control study of ABA v. Head Start Denver Model(comprehensive program with ABA+social enhancements)= more improvement with HSDM model(Pediatrics 2010)

Where are those services to be provided? LRE requirement– continuum of educational placements to implement IEP with preference for reg school setting Split in federal circuit courts on application Can child benefit from education with use of supplementary aids and services in regular classroom? Only go to sep setting if no(2,3,5 cir) Is sep setting superior?(6th and variation in 7,9)

How are services to be paid Using Part B or C funds, state and local funds if IEP/IFSP calculated to achieve educational benefit OSERS advisory letter– Can’t require out of system services (e.g. ABA) unless IFSP team determines needed to achieve benefits Standard is not actually available, LEA must create services to implement IEP/IFSP Reimbursement cases

How are services to be paid-Reimbursement cases Burlington- 1) whether there was procedural compliance with IDEA; 2) whether there was substantive compliance with IDEA; 3) whether the private program was appropriate for the child Burden of proof is on parents

Medicaid All poor and eligible children (children receiving SSI) under age 21 enrolled in Medicaid are entitled under federal law to receive services includes immunizations, physical and mental health, vision, hearing, dental, lead exposure screening and health education Includes care coordination and transportation Under NY state plan includes most EI services including all therapies, parent support services (respite, parent counseling, training) Most EI services can be funded by Medicaid covers many special education related services

Insurance litigation Insurance coverage is major issue ASD cases include coverage for basic services such as speech and OT Seen as ‘medically necessary’ NJ use of MH parity law enables coverage—ASD viewed as “biologically-based mental illness”(now new state law to remedy this problem—MA-restorative)\ S.7000 pending NY bill outlawing discrimination with no age limits

Rising ASD Litigation Massive increase in education litigation 700 cases involving children with ASD >350 cases in last 5 years Over 1/3 of all cases in NYC involve ASD Massive increase in litigation under National Vaccine Injury Act (cases in Court of Claims decided by Special Master)-5000 cases denied

Vaccine Litigation Parents lose virtually all cases but thousands filed One exception is child with seizure immediately after MMR with other severe disability(mitrocondrioal condition) No scientific support for link between ASD growth and vaccine (MMR or DPT) or even nasal spray Many cases dismissed for late filing (under National Vaccine Injury Act of l988 must file within 36 months of manifestation of onset) Belief discredited by recent withdrawal of Lancet article

State legislation 2007 - Over 40 bills passed 2008 - 127 bills passed 2009 -> 350 bills proposed Largest categories: Insurance reform(anti-discrimination provision most applicable only to children with age limits and financial caps)NY pending bill covers lifespan Education provisions(training, use of ABA) State infrastructure(TF, Commissions)

Federal legislation Combating Autism Act of 2007- funds for research and training Expanding the Promise bill- lifespan services, expand UCEED and P&A (Clinton)-2008 Reauthorization of NCLB – conflict between testing requirements and provision of individualized ASD non-academic services Health care reform – access, insurance equity, shortage of qualified personnel, long-term (lifespan) supports