TEACCH Centers(9) CDSAs (18) LMEs (24) FSN Programs (21) ASNC CCh Chapters (40) AHEC Programs (9)

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1 North Carolina State of the State on Autism Spectrum Disorders Act Early Region IVA Summit Nashville, Tennessee January 8-9, 2009

2 Overview of the State System 2

3 Autism Related Resources in North Carolina TEACCH Centers(9) CDSAs (18) LMEs (24) FSN Programs (21) ASNC CCh Chapters (40) AHEC Programs (9) 3

4 Promising and Effective Practices 4

5 Primary Care Autism Screening Referral Process for Infants and Toddlers MCHAT is Positive (+) OR Autism Surveillance yields 2 or more + risk factors If Global Developmental Delay, Intellectual Disability is present, or Genetic or Neurologic disorder is suspected Consider referral to D & B Pediatrician Geneticist Neurologist CDSA Eligibility evaluation If developmental delay or established condition found IFSP No ASD or Developmental Delay found Audiology Evaluation Further Autism-specific specific evaluation as needed Continued Case Management, IFSP Continued Direct Services as indicated Primary Care Physician (PCP) is notified ASAP about the evaluation result and service plans in order to have a follow-up with the family. PCP shares results of Audiological Evaluation and other referrals (if any) with the CDSA as soon as results are reported. Notes: CSC or other community services (if renewed concern rerefer) Autism specific evaluations and/or confirmation of an autism diagnosis are influenced by the age of the child and findings; younger children and those with less significant symptoms are more difficult to diagnose.

6 ASNC Initiatives Have piloted a training program for pediatricians in the screening, diagnosis, and early intervention for toddlers with ASD. Developed the "Right Start Manual that is available to families online and in print. The intent of the manual is to supplement the "First 100 Days Kit" provided by Autism Speaks. Plan to develop web-based based resources to the broader pediatric community. 6

7 DPI ASD Initiatives Conducting interdisciplinary training modules for all LEAs in the area of ASD assessment and intervention. Districts asked to create an Autism planning team comprised of a minimum of 3 individuals who already have knowledge about autism. The major goal is establish 1 or more teams within each LEA who can deliver professional development and support to teachers, related service providers, para- educators, and parents working with students on the Autism Spectrum. The teams (i.e., any combination of speech pathologist, occupational therapist, program specialist, behavior specialist, exceptional children teacher, general education teacher or content specialist and psychologist) also will systematically assess and develop interventions for children with ASD. 7

8 TEACCH Community Initiative Autism Second Level Assessment (A2) is an innovative community- wide and coordinated response that provides rapid determination of normally developing children, those children with developmental problems needing early intervention, and those with likely ASD. A2 provides streamlined access to early intervention, autism-specific specific intervention, individualized comprehensive evaluation, and family support. This program incorporates an interdisciplinary center with exemplary evaluation and treatment of young children with autism, strong consultative relationships with primary care practices, and collaborative links with the local CDSA, FSN, and TEACCH centers. ASNC, Buncombe County and Asheville City School System, Asheville TEACCH Center, CDSA, Olson Huff Center, and FSN representatives convene quarterly as a coordinating group (Autism Collaborative) to: Share information about the scope of services and programs through each agency; Have case-based discussions to assist in care coordination; and Engage in collaborative problem-solving l to address gaps/needs for ASD 8

9 Research Findings Training/Work Force Development Evidence-Based d Practice/Policy 9

10 Current Challenges and Gaps 10

11 Challenges and Gaps Improve interagency communication Will help to minimize duplication of efforts Improve interagency coordination, particularly with respect to clinical services and training initiatives Will increase efficiency from referral to diagnosis to interventions Will facilitate access to care for all Will facilitate family-friendliness friendliness across severity and lifespan transitions Need to engage in rapid work force development to serve the needs of those with ASD as well as those not meeting criteria Increase public awareness of autism and evidence-based practices 2009 budget projections suggest the possibility of a $2-3 billion deficit The silver lining-- --increased collaboration and efficiency for all agencies. 11

12 Looking Toward the Future 12

13 To The Future. We have assembled a critical group of stakeholders in North Carolina; i.e., NC State Autism Advisory Committee Sanctioning of this group by the NC legislature? This group should drive increased coordination of clinical services and training initiatives across the state, perhaps with targeted initiative as per state needs. Community of Practice model? We have begun to examine what and where ASD services are in the state, and have begun discussions about the possibilities of using an interactive website for families, providers, and other consumers to access resources in their region This should facilitate expanding upon our innovations such that individuals with ASD and their families should have immediate and efficient access to their needs. The inclusion of active researchers on this committee should provide ongoing input into promising practices and new knowledge which, in turn, should guide our evidence-based policies and practices. NC Insurance Committee exploring legislation to facilitate costs Strong advocacy groups for ASD and a well-positioned group of leaders. 13

14 North Carolina Act Early Team Members Catherine Alexander, PT LEND Trainee Deborah Carroll, PhD, Public Health Early Intervention Branch Head Elizabeth Crais, PhD, Division of Speech and Hearing Sciences, UNC-CH CH Joan Crissey, MA, Public Health Genetics and Newborn Screening Unit Marian Earls, MD, President of NC Pediatric Society 14

15 North Carolina Act Early Team Members Anthony Garcia-Copian, Disability Rights NC Claire Greer, NC Dept. of Public Instruction ti Stephen Hooper, PhD, UCEDD/LEND/UNC Steven Love, PhD, TEACCH Maureen Morrell, Autism Society of NC 15

16 North Carolina Act Early Team Members Holly Riddle, JD, DD Council John Thomas, M.Ed., ASD Partners Karen Luken, MSRA, NC Office of Disability and Health ASD Advisory Committee Members Vocational Rehabilitation Dept. of Medical Assistance Mental Health 16

17 Questions? Contact Information: 17

18 State of the State of North Carolina 10th largest state in the country with a population of 8,856, % female 25% < 18 years of age 30% minority representation 21.5% African American 6.0% Hispanic or Latino (5 th fastest rate in the country 1.2% Native American 1.4% Asian 18

19 State of the State of North Carolina According to National data, North Carolina has a 15-16% 16% rate of children with special health care needs (CSHCN) High rate of children under 18 years of age live in poverty (3-to-1 ratio of Minorities to Caucasians) 20% have no health insurance 31% have inadequate health insurance 14% are without a primary care physician 10% depend on Emergency Departments for their primary care. 54% have a medical home, but at a 2-to to-1 rate for Caucasians versus minorities 19

20 State of the State of North Carolina Approximately 4000 children, ages 5 and younger, in NC with a diagnosis of ASD. Approximately 5000 children, ages 6 to 18, in NC with a diagnosis of ASD. NC ranks 7 th in the country with respect to the number of children with ASD, ages 6 to 22, being served in the educational system. This number has tripled since 1999 and has shown a cumulative growth of about 9 times other childhood exceptionalities. 20

21 Treatment and Education of Autistic and related Communication Handicapped Children (TEACCH) Provides a wide array of clinical services across the state for individuals with ASD. 9 TEACCH centers that have connections to all 100 counties. Provide ASAD training and professional development to national and international communities. Services are free of charge to NC residents. Has become one of the main components of the Carolina Institute for Developmental Disabilities. 21

22 Child Development Service Agencies (CDSAs) 18 agencies that are strategically located across the state. Built on an interdisciplinary model and designed to promote access to care for young children. Provide free evaluations and service coordination to infants & toddlers with disabilities or delays or established risk conditions (including autism) and their families. Developed regional provider networks that extend into all 100 counties. 22

23 Local Management Entities (LMEs) The 24 Local Management Entities (LMEs) are agencies of local l government-area authorities or county programs. They are responsible for managing, coordinating, facilitating, and monitoring the provision of mental health, developmental disabilities, and substance abuse services in the catchment area served. LME responsibilities include offering consumers 24/7/365 access to screening, triage, and referral for services; developing and monitoring provider organizations; care coordination; and handling consumer complaints and grievances. 23

24 Family Support Network (FSN) The FSN matches trained support parents with parents in similar situations who would like to connect with someone about their child's needs. Provide information and referral for families with children who have special needs, or are at risk. Provide ongoing support and information to families as their children grow. Provide support groups and social activities for all family members. Provide information, resources, and training for both families and service providers. 21 affiliated programs provide parent-to-parent matches across all 100 state counties at no charge. 24

25 Autism Society of North Carolina (ASNC) As a member of the Autism Society of America, ASNC has become a cornerstone of autism education and advocacy in the state. There are 40 active chapters, 3 major affiliates, 5 support groups, and regional parent advocates. ASNC Chapters provide a wonderful opportunity for parents who face similar challenges to: offer each other support and encouragement; share experience, information and resources; raise awareness about the needs and the strengths of individuals with ASD; learn realistic, practical solutions for autism-related concerns; have a place where they feel welcomed, accepted, and understood. 25

26 Area Health Education Centers (AHECs) The North Carolina AHEC Program addresses the state s health and health workforce needs by providing educational programs in partnership with academic institutions, health care agencies, and other organizations committed to improving i the health of the people of North Carolina. AHEC educational programs and information services are targeted toward: Improving the distribution and retention of healthcare providers, with a special emphasis on primary care and prevention. Improving the diversity and cultural competence of the health care workforce in all health disciplines. Enhancing the quality of care and improving health care outcomes. Addressing the health care needs of underserved communities and populations. 26

27 NC Department of Public Instruction The North Carolina Department of Public Instruction is the agency charged with implementing the State's public school laws and the State Board of Education's policies for pre- kindergarten through 12th grade public education. The mission of the Exceptional Children Division is to assure that t students t with disabilities and those who are academically or intellectually gifted develop mentally, physically, emotionally, and vocationally through h the provision i of an appropriate individualized education in the least restrictive environment. 115 Local Education Agencies (LEAs). 27