Collaboration Commitment Consistency Developing NJs System of
Services for Children with ASD & other DD
Slide 2
Trigger for & Early Action 1998 Brick Township autism
cluster (CDC report 2000) 6.7 per 1000 children 1999 initial
creation of Governors 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)
Slide 3
NJ Legislative Response NJ Legislature passes package of bills
focused on Autism in 2007 Established the Governors 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
Slide 4
NJ Legislative Response NJ Legislature passes 2 nd 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
Slide 5
Governors 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)
Slide 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
Slide 7
Reporting of Autism NOT MANDATORY MANDATORY
Slide 8
Developing Clinical Guidelines Early intervention developed its
1 st 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
Slide 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)www.state.nj.us/dobi/bulletins/blt10_02.pdf
Developed forms www.state.nj.us/dobi/consumer.htm
Slide 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%)
Slide 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
Slide 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
Slide 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
Slide 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
Slide 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
Slide 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
Slide 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
Slide 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)
Slide 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 Governors 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)
Slide 20
Key Partners & Core Team
Slide 21
State of NJ DOE School ages 3-21 ASD Laws ASD & other DD
Insurance NJ DCF DHS Office of Autism- Adults ASD LAWS DHSS
Governors Council Autism Clinical Enhancement Programs FHS ASD
Registry EI: 0-3 21 SCHS Case Management Units 11 CEC
Slide 22
Title V Services within the NJ Department of Health &
Senior Services WIC Office of Nutrition and Fitness Maternal and
Child Health Services Special Child Health and Early Intervention
Services Chronic Disease Prevention and Control Newborn Screening
and Genetic Services Early Identification and Monitoring Family
Centered Care Early Intervention System Division of Family Health
Services Office of Primary Care & Rural Health
Slide 23
Special Child Health and Early Intervention Services Early
Intervention Services Early Identification and Monitoring Family
Centered Care Services Mission: To assure that all children with
special health needs have access to comprehensive, community based,
culturally competent, and family centered care. Newborn Screening
and Genetic Services
Slide 24
NJ Partners in ASD Clinical Enhancement Centers Physicians and
Health Care Professionals Advocacy Groups State (Autism NJ, POAC,
Autism Family Services) and National Parent Partners (SPAN-Family
Voices, F2F, PTI, Parent to Parent, FFCMH) Federal Support CDC
Surveillance Act Early Campaign SIG grants NJ State
Departments
Slide 25
For more information: SPAN Diana Autin, Co-Director,
[email protected]@spannj.org Jennifer Pitre, SIG
Director, [email protected]@spannj.org Malia Corde, Medical
Home Director, [email protected]@spannj.org NJ
Department of Health & Senior Services Marilyn Gorney-Daley,
Director, Special Child Health & Early Intervention Services,
[email protected]@doh.state.nj.us
AAP-NJ Fran Gallagher, Director,
[email protected]@aapnj.org Governors Council Martin
Zanna, Acting Executive Director,
[email protected]@doh.state.nj.us Linda
Boclair, Executive Assistant,
[email protected]@doh.state.nj.us