Engulfed by the Spectrum: The Impact of Autism Spectrum

Disorders on Law and Policy

Autism Special Interest Group Webinar Series February 2, 2012

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Presentation

Sheryl Dicker, J.D

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Presenter

Sheryl Dicker, J.D.

Assistant Clinical Professor of Pediatrics and Family and Social Medicine

Children’s Hospital at Montefiore Albert Einstein College of Medicine

Former Executive Director

Permanent Judicial Commission on Justice for Children

Engulfed by the Spectrum:

The Impact of Autism Spectrum

Disorders on Law and Policy

Sheryl Dicker, J.D.

Assistant Clinical Professor of

Pediatrics and Family and Social Medicine

Children’s Hospital at Montefiore Albert Einstein College of Medicine

Former Executive Director

Permanent Judicial Commission on Justice for Children

Prevalence of ASD

• Rare condition, not mentioned in EHA • Originally called “childhood schizophrenia” • 1:2500 in 80s(ASA) • 1:110 children with ASD(CDC, AAP) • 1:38 new South Korea study • Majority boys-4x more affected

CDC 2010

Plan for Today

• Focus on the legal issues raised by the prevalence

• Understand the IDEA issues for children with ASD

• Understand the state and federal legislative issues

• Begin to explore the family law issues for children with ASD

Vaccines as the Center of

Litigation on Prevalence

• Parents lose virtually all cases (lack of causal link) but thousands filed (special court >5,000 cases)

• Recent US Supreme Court case (Bruesewitz v. Wyeth) holds that all cases must be filed under National Vaccine Injury Act of l988 (must file within 36 months of manifestation of onset)

• One exception is child with seizure immediately after MMR with underlying severe disability (mitochondrial disorder)

• No scientific support for link between ASD and vaccine (MMR or DPT) or even nasal spray

• End litigation? Note IACC

EI and Special Ed Litigation

>750 cases in last 5 years under IDEA (40 in 2 mos)

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?) Not issue in Part C only Part B

• How are those services to be paid? (How?)

Who is Eligible as Child with ASD?

• Meet definition of IDEA not DSM (same symptomology-communication, social and repetitive rep.)

• Differences – not primary ED; adversely affects education (IDEA)

• Problem because of history viewed as SED and overlap of behavior problems (childhood schizophrenia)

• DSM can be supporting evidence but must address IDEA

• Not problem in EI- can be child with med condition with high probability of resulting in DD or child with function delays in speech or emotional-behavior

How Can Children with ASD Be

Found Eligible for Part B?

• Adversely affects child’s education performance is second prong as ASD definition under IDEA

• Grade or age appropriate

• Look to other factors - physical education; adaptive skills; social skills; group activities;

• State that primary disability is not ED

What Services Are Children

Entitled to Receive?

• Heavy case law reliance on IEP/IFSP process

• Special Education and Related Services must be reasonably 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 but disallow blanket rejection policy (cases mostly involve ABA) (note new DHSM)

What Services Are Children

Entitled to Receive?

• Growing court support for school alternatives from all ABA if meet above standards

• Issues - how many hours per day; summer school program; after school program; actually available discounted (Deal v. Hamilton County 2004)

• Not ‘experimental’ or unproven treatments such as diet, vitamins, metal removal (cholation), facilitated communication

ABA

• Applied Behavioral Analysis as the major evidence-based therapy for ASD

• Many cases involve controversies about intensity of services (hours per day, week of 1:1 service)

• J.P ex rel Popson v. West Clarke-combination of services(Ind)(US Sup Crt)

• Many cases in NY-parents losing more often when district can offer ABA plus other services (AL&Vr v. NYC-McCarton school case @ intensity of services- 2011)

Where Should These Services

Be Delivered?

• LRE requirement– continuum of educational placements to implement IEP

• Part C- Natural environments- home or daycare (nonissue)

• Can child benefit from education with use of supplementary aids and services in regular classroom?

• If not, what is LRE for benefit? (look at applying IEP on continuum; preference for most ‘typical’).

• ASD cases heavily favor most restrictive settings or superior placement, cases on residential care with courts deferring to districts due to intense needs (more services in IEP more restrictive)

How Are Services to Be Paid?

• Using Part B or C funds, state and local funds

• If IEP/IFSP calculated to achieve educational benefit

• Reimbursement cases-district fails to provide FAPE, parent may enroll in appropriate private school and be reimbursed (Burlington-U.S.SC)

• Parent bears burden of proof (not in NY unless reimbursement);

• Ethics question—great risk for non-wealthy in seeking reimbursement

• Trend v. parents as more districts develop alternatives and offer some educational benefits

Medicaid As Source of Payment

• All poor and eligible children (children receiving SSI and most children in foster care) under age 21 enrolled in Medicaid are entitled under federal law to receive services includes unclothed exam at periodic intervals

• Immunizations complete and up-to-date,

• Screenings for physical and mental health, vision, hearing, dental, lead exposure screening and health education

• Treatment for all diagnosed physical and medical conditions

• Districts use for health-related services such as OT, PT

Insurance Issues

• Insurance coverage is major issue but generally for wealthy parents

• ASD cases include coverage for basic services such as speech, OT, PT, ABA

• Seen as ‘medically necessary’(big issue in Obama health reform)

• Restorative vs. habilitation-major issue

• NJ use of MH parity law enables coverage - ASD viewed as “biologically-based mental illness”

ASD Legislative Activity

• 2007 - Over 40 bills passed

• 2009 - 350 bills proposed

• 2011- total of 33 states including NY and Calif

pass insurance reform

• Largest categories:

• Insurance reform: key issues-type, caps, age limits;

Illinois-up to age 21 $36,000 limit; SC-up to age

16,%50,000 limit; nondiscrimination- Mass and NJ)

State Legislative Activity (cont’d)

• Services (Maine - expands community support services to ASD; NJ- more funding; Illinois - IEP must consider social/adaptive skills; Michigan - special teacher training in ASD required and language holding IEP must fulfill potential)

• Autism Registry- Del requires medical personnel to register child with ASD

• State infrastructure (Pa- Bureau of Autism Services; NJ TF)

New NY Insurance Law

• Requires private health insurance to provide coverage for screening, diagnosis and treatment and follows all insurance policies such as copayments, deductibles, utilization review etc.

• Has a cap of $45,000 a year for ABA

• Has no age cap

• Doesn’t sanction any new services but will cover evidence-based medically necessary treatments (OT, PT promised by sponsors)

• Cannot be used for educational purposes to further IEP (potential complication)

Federal Legislation

• Combating Autism Reauthorization Act (CARA) of 2011- reauthorization of major federal legislation providing funds for research and training

• Health care reform – access, no pre-existing conditions (now), habilitation vs. restoration for therapies; shortage of qualified personnel, long-term (lifespan) supports (CLASS Act)

• Need for new champions and new ideas

Few Family and Juvenile Law Cases

• Only a dozen total reported cases

• Predominately middle-level appellate courts

• Most in the context of child protection

• Some custody

• One child support

• Three reported juvenile delinquency

General Concepts in Cases

• Two major issues in ASD cases

– Parental capacity to raise child with ASD

(ability to spot problems, understand and accept

problem; advocate for services, adhere to

recommendations)

– Need of a child with ASD for consistency and

routine

Parental Capacity

Custody

Martocchio v. Savior- Conn Super Court- custody case

Father wins custody v. mother and grandparents he demonstrates “vol immersion in study of autism, partakes in support groups, relentless advocate”;

Orders grandparents to learn about ASD too

Prospective caregiver of child with ASD must be willing and capable of learning about ASD and applying that knowledgeable to meet child’s special needs

2011 Case on Custody

• Geo grandparents custody upheld for child with

ASD -2011

• Grandparents v. mother

• Recognize and understand needs

• Actively involved in securing services

• Monitor child needs and progress daily

• Mother rejects ASD and never attends any

therapeutic sessions and never alone with child

Parental Capacity Majority occurs in child protection cases - often

reported in TPR context

In re MB- Ohio appellate case (2011)

child initially removed b. o. mother’s drug use

young child found to have ASD and pica behavior

mother’s ignores needs

mother refuses any services

mother refuses to communicate with specialists

EI says mother cannot care for child

Parental Capacity- TPR (cont’d)

• Recent NJ Superior Court case (decided 6/11) (NJ DCFS v. GS)

• Finding that parent lacked the “psychological capacity” to understand and address the child’s special needs

• Parental lack of capacity only served to magnify child’s needs

• Undermined child’s need for routine and consistency

• Thus, combining parental capacity with need for routine

Review of ASD Issues (cont’d)

• Visitation (raised in one divorce case, LaGuardia v. LaGuardia, Tenn Ct. Appeals)

• Need for routine

• Ability of parent to adhere to visitation plan

• Order carefully tailored to meet child’s abilities

• Carefully orchestrated minor changes to plan

Child Support and ASD

• Same rule as for other children with disabilities - parent responsible for child support over age 18

• Support order = actual expenses for caring for child minus other benefits (i.e., SSI)

• Courts will order continuation of insurance

• One case — State ex. Rel Moore v. McCampbell, (Iowa Ct. Appeals 2010)

Juvenile Delinquency and ASD

• 3 reported cases

• One trial level from NY Family court (In re Erick B.) and one 2011 NJ case

• First issue (decided in NY and NJ cases) capacity of juvenile with ASD to stand trial

• Does juvenile understand the proceedings against him and can he assist in own defense?

• In both cases answer was no.

• Issue - what to do next? NY-remanded to OMRDD and NJ ordered services to address problem (sex abuse)

Juvenile Delinquency and ASD

• After determination of capacity to stand trial

• Court should consider the nexus between alleged act and ASD

• Know about HOUSE RULES novel?

• In one case, Indiana Ct. Appeals rejected nexus (Marlett v. State)

• Nexus could be apparent when juv doesn’t make eye contact, runs away or answers oddly or refuses to answer questions

• Above could be indicators of guilt but also of typical ASD behaviors

CONCLUSION *Law reflects how little we know – EI works; few

evidence-based therapies

*Reimbursement dominates caselaw having a chilling affect on program dev (caselaw affected by ASD reimbursement cases-b of p; stay put for all appeal (2011 case); qual prof; LRE, evid based services)

• New NY insurance law may make little difference

• Parental capacity and need for routine major issues in family court cases

• Juveniles must be found competent to stand trial and court must find nexus bet crime and ASD

CONCLUSION

• Need for more coordinated advocacy

• Need for focus on all children with disabilities

• Need for understanding possible consequences

• Limited success of litigation

• Need for attorneys and other advocates to develop

future plans

• Need for new policies concerning the inevitable

“cliff” for children with ASD over 21

Q & A

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THANK YOU

Visit the Websites AUCD Website: http://www.aucd.org

Autism SIG Website: http://www.aucd.org/template/page.cfm?id=508

Questions about the SIG?

SIG Chair: Cathy Pratt: prattc@indiana.edu

Questions about the Webinar? Jennifer Bogin: jbogin@aucd.org

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