Developing NJ’s System of Services for Children with ASD & other DD

1. Developing NJ’s System of Services for Children with ASD & other DD Collaboration Commitment Consistency

2. Trigger for & Early Action • 1998 Brick Township autism cluster (CDC report 2000) • 6.7 per 1000 children • 1999 initial creation of Governor’s Council housed at UMDNJ; Autism Medical Research and Treatment Fund enabling monies from $1 surcharges on fines and penalties from traffic violations to be deposited by the state treasurer into this fund • 2005 NJ DOE provides $5 million to 55 school districts to improve in-district services to students with ASD • 2007: NJ has highest rate of autism among states monitored by CDC • 1 in 94 (CDC, 2007 – MMWR) (based on 8 year olds in 4 counties studied)

3. NJ Legislative Response • NJ Legislature passes package of bills focused on Autism in 2007 • Established the Governor’s Council for Medical Research & Treatment of Autism within the Division of Family Health Services in Special Child Health & Early Intervention Services (transfer from UMDNJ) • Re-authorized & indefinitely extended Autism Medical Research and Treatment Fund enabling monies from $1 surcharges on fines and penalties from traffic violations to be deposited by the state treasurer into this fund • Established Autism Registry requiring licensed health professionals who diagnose or follow a child with autism to register all identified children with Autism in Registry housed within Division of Family Health Services • Required development of Clinical Guidelines for Health Care Professionals to use in evaluating infants and toddlers who are identified as having autism or suspected of being on the spectrum

4. NJ Legislative Response • NJ Legislature passes 2nd package of bills in 2009 • Established a insurance mandate, requiring private insurers to pay for therapies for children with ASD & other developmental disabilities (first and only state in the nation to include other DD in this legislation • Required training for all first responders in dealing with people with ASD & other DD • Training created with stakeholder input • Available as an on-line training and “test”

5. Governor’s Council • Mission is to establish an Autism Center of Excellence to advance understanding of the potential causes & treatments of ASD by supporting basic science studies & clinical research initiatives • Membership: academics, Autism & healthcare organizations, member of general public, individual with autism or family member, appointees of NJ Senate President, Assembly Speaker, & NJ Department of Health • Funded 6 clinical enhancement centers ($8.55 million) to reduce delays in evaluation/enhance early ID & connect to treatment, & Biomedical Research Grant program ($5 million)

6. Developing the Autism Registry • Convened panel of stakeholders: child/adolescent psychiatrists, medical directors of neuro-developmental centers, consumers, pediatricians • Based on input from stakeholders: • Designed & piloted addendum to Birth Defects Registry form • Promulgated Administrative Rules in 2009 • Funded with $500,000 from State General Fund until SFY 2010; now funded by Autism Medical Research & Treatment Fund

7. MANDATORY NOT MANDATORY Reporting of Autism

8. Developing Clinical Guidelines • Early intervention developed its 1st set of Service Guidelines for Children with ASD through stakeholder-informed process in 2003; convened stakeholders to update the Guidelines • Families • Regional Early Intervention Collaborative staff • EI providers • Autism advocates • Revised Service Guidelines were issued in 2010 • NJ Department of Health issued Early ID of ASD: Guidelines for Healthcare Professionals in April, 2009

9. Establishing Insurance Mandate • Covers “medically necessary” speech, OT, PT, & ABA • EI Family cost share is reimbursable by private insurance • Assigned responsibility to the NJ Department of Banking & Insurance (DOBI): • Issued an advisory bulletin on January 14, 2010 to all New Jersey health benefit plan providers regarding the implementation of P.L. 2009 (www.state.nj.us/dobi/bulletins/blt10_02.pdf) • Developed forms • www.state.nj.us/dobi/consumer.htm

10. Identifying needs • 2008-2009 Adults with Autism Task Force • Worked with NJ Department of Human Services Division of Developmental Disabilities • Disseminated survey to 4,524 families of people with autism • 1,077 respondents • 89% parents, 7.6% people with ASD, 3.4% guardians • 70% were parents of children with ASD aged 21 or younger • 150 individuals testified at 6 public hearings or submitted testimony • Most commonly cited ASD-related impairments • Social interaction & social literacy difficulties (92%) • Executive functioning difficulties (63.3%) • Sensory issues (59.5%) • Self-care difficulties (53.7%) • Co-existing mental health issues (46.8%) • Communication difficulties (44.8%)

11. Common themes • Common themes for expressed concerns • Transition from school to adulthood • Having a place to live in the community • Other expressed needs • Day programs • Social networks • Training & Employment opportunities • Educational, medical, and social needs • Dearth of physicians trained to treat people with ASD • Lack of appropriate housing, employment, social, long-term care in urban areas • Lack of culturally appropriate services

12. Transition Concerns & Recommendations • Transition concerns • 30% of transition-age youth with ASD had no transition plan • 48.5% of those with transition plan were not confident that the plan would be implemented • Transition recommendations • Develop a user-friendly manual for parents & professionals with uniform guidelines re: the transition process • Establish best practice guidelines for transition programs • Establish appropriate vocational service program & pre-graduation career exploration & experience • Improve coordination among agencies involved with transition

13. Health Concerns & Recommendations • Health concerns • 59% were not informed about Medicaid State Plan Services • 71% were not informed about Medicaid waivers • 86% were not informed about private long term care insurance • 85% were not informed about doctors with ASD/DD specialty • Health-related recommendations • Educate people with ASD & their families to understand the rules & regulations governing health benefit plans • Develop consumer friendly materials regarding eligibility for health services & Medicaid State Plan

14. Follow-up Needs Identification • 2009-2010 Listening Tour • Collaboration of Autism NJ, SPAN, other advocacy groups • 537 face-to-face interviews with individuals with ASD, family members, service providers, & other professionals from every county; rural, urban, & suburban; varied racial/ethnic/socio-economic backgrounds & languages; religions; from infancy to adulthood • Results reviewed, analyzed, & interpreted by cross-section of autism community (self-advocates, parents, government officials, education professionals) • Issued Connecting with Autism: A Blueprint for Lifetime Supports in June 2010

15. Additional Recommendations • Improve access to timely screening & referral for diagnosis • Establish a statewide central data system including a comprehensive electronic reporting mechanism to determine if providers are using screenings and making timely referrals • Ensure all medical staff are knowledgeable, effective, & compassionate in the delivery of services, & up-to-date on evidence-based practices, treatment decision-making & management, & how to meet diverse family needs

16. Family Focus Group Recommendations • SPAN conducted focus groups with families, especially Latino, South Asian, & African-American families • Recommendations included need for: • Face-to-face and ongoing family support “for families like me” • Prompt access to culturally competent & easily accessible early & continuous screening to ID ASD/DD early on • Family-centered, culturally competent medical home to coordinate needed care for children with ASD/DD from early childhood through transition to adult life • More, and higher quality, community-based services including certified ABA experts, especially for families in high poverty communities & families speaking languages other than English • Adequate public & private insurance; only 25% of NJ families have an insurance plan covered by the Autism & other DD mandate • Assistance & support to effectively transition to adult systems of care

17. Components • Improve early identification through increased routine use of standardized screening tools by primary care doctors (partnering with AAP-NJ & SPAN) & funding of Autism Clinical Centers of Excellence to reduce wait time & improve quality of evaluations • Connect children to services as quickly as possible through Autism Registry (& ensure providers are aware of how to register), quality services through early intervention & case management from SCHS CMUs, & follow-up to ensure that families access needed services

18. Components • Improve access to a medical home for children with ASD & other DD from early childhood through transition (in collaboration with Community of Care Consortium) • Help families pay for needed services through ASD/DD insurance mandate & other healthcare financing resources • Ensure that families & professionals are aware of existing services & resources through providing information, & developing & disseminating tools & guides in various formats & languages (i.e., Family Guide to Navigating NJ Service Systems for Individuals with ASD)

19. Components • Improve access to effective transition services through training providers, families, youth; developing & disseminating quality resource materials in English & Spanish; & supporting transition through SCHS CMU & SPAN Family Resource Specialists • Coordinate research & clinical activities through Governor’s Council, & state agency efforts through Division of Family Health Services at NJ DHSS & “new” NJ DHS Office of Autism, & coordinate stakeholder efforts through the Community of Care Consortium for CYSHCN (including ASD & other DD)

20. Key Partners & Core Team

22. Title V Services within the NJ Department of Health & Senior Services Division of Family Health Services WIC Office of Nutrition and Fitness Special Child Health and Early Intervention Services Maternal and Child Health Services Office of Primary Care & Rural Health Chronic Disease Prevention and Control Newborn Screening and Genetic Services Early Identification and Monitoring Family Centered Care Early Intervention System

23. Special Child Health and Early Intervention Services Newborn Screening and Genetic Services Early Intervention Services Family Centered Care Services Early Identification andMonitoring Mission: To assure that all children with special health needs have access to comprehensive, community based, culturally competent, and family centered care.

24. NJ Partners in ASD

25. For more information: SPAN • Diana Autin, Co-Director, diana.autin@spannj.org • Jennifer Pitre, SIG Director, jpitre@spannj.org • Malia Corde, Medical Home Director, parent2parent@spannj.org NJ Department of Health & Senior Services • Marilyn Gorney-Daley, Director, Special Child Health & Early Intervention Services, marilyn.gorney-daley@doh.state.nj.us AAP-NJ • Fran Gallagher, Director, fgallagher@aapnj.org Governor’s Council • Martin Zanna, Acting Executive Director, martin.zanna@doh.state.nj.us • Linda Boclair, Executive Assistant, linda.boclair@doh.state.nj.us