Autism Issues and Needs Governor’s Council on Disabilities & Special Education

Autism Autism is a spectrum disorder that is neurologically-based and affects: –Social skills –Communication –Play –Behavior Autism Issues and Needs Governor’s Council on Disabilities & Special Education

Prevalence “Epidemic” of autism spectrum disorders in Alaska and across the nation –Better diagnosis –Broader definition –Unknown factors In 1970’s prevalence was 5 in10,000 Current prevalence 1 in 150 Birth – age 3 (1 in 133 in Alaska) Autism Issues and Needs Governor’s Council on Disabilities & Special Education

Alaska Information Autism Issues and Needs Governor’s Council on Disabilities & Special Education Autism

Alaska Information 10,000 births per year in Alaska 67 births/year expected to be diagnosed with autism Average cost per child diagnosed with autism over lifetime is $3.2 million 67 births x $3.2 million = $214.4 million –Cumulative annual cost Autism Issues and Needs Governor’s Council on Disabilities & Special Education

What Research Tells Us Evidence-based interventions improve functioning and development in many children and to varying degrees, especially when offered at a young age Two studies achieved similar results –About half of the children who received intensive early intervention achieved normal functioning after 2-3 years of treatment, compared with 2% in the control group –Average gain of 22 IQ points –1/3 of the subjects gained 45 IQ points Autism Issues and Needs Governor’s Council on Disabilities & Special Education

If We Obtained Similar Results in Alaska About 33 of the 67 births per year would obtain normal functioning Cost of 3 years of intensive early intervention would be approximately $180,000 per child $60,000 x 3 years 67 children = $12,060,000 Savings of between $1.6 and $2.8 million per person to age 55 Reduced special education costs $208,500 per child Texas (federal and state funds) $274,700 - $282,690 per child (with inflation) in Pennsylvania Autism Issues and Needs Governor’s Council on Disabilities & Special Education

Previous Activities Recruited a neurodevelopmental pediatrician skilled in diagnosis of Autism Spectrum Disorders Launched Parent Navigation program Sent team to the Alaska National Early Childhood Technical Assistance meeting Formed an Autism Alliance –Generated public awareness of autism spectrum disorders –Brought attention to gaps in system –Advocated for an autism clearinghouse/center Convened an Autism Summit –Identified and prioritized what needed to happen Secured funding to establish the Alaska Autism Resource Center Autism Issues and Needs Governor’s Council on Disabilities & Special Education

Governor’s Council on Disabilities & Special Education Convened an Ad Hoc Committee on Autism in December 2005 to develop recommendations for the administration and legislature Committee members include: –Parents –Department of Education & Early Development –Office of Children’s Services –Division of Behavioral Health –Division of Public Health –Division of Senior & Disabilities Services –Alaska Mental Health Trust Authority –University of Alaska Anchorage –Office of the Commissioner – Department of Health & Social Services (State Medicaid Director) –Special Education Service Agency –Stone Soup Group Autism Issues and Needs Governor’s Council on Disabilities & Special Education

Committee’s Report Committee looked at: –Screening, identification, and diagnosis –Services (educational, medical, home and community based, employment, parent training and support) –Workforce development Recommendations prioritized Autism Alliance, Autism Summit, and Ad Hoc Committee generated common recommendations Autism Issues and Needs Governor’s Council on Disabilities & Special Education

5-Part Autism Initiative 1.Universal screening for ASD –ABCD pilot project in Anchorage 2 pediatrician offices and ANMC Discussion underway with ANTHC –Early Periodic Screening, Diagnosis and Treatment (EPDST) changes Enhanced fee requires use of Ages &Stages, Modified Checklist for Autism in Toddlers (M-CHAT) Electronic records system –Combating Autism Grant Rapid response system in rural and remote areas of the state Multi-disciplinary training Outreach campaign Autism Issues and Needs Governor’s Council on Disabilities & Special Education

5-Part Autism Initiative 2.Expanded diagnostic capacity –Children’s Hospital at Providence Added advanced nurse practioneer Expanded pediatric neurodevelopmental physician services for complex diagnoses Addition of pediatric psychology diagnostic testing and evaluation; occupational, physical and speech-language assessments and evaluation Statewide clinics Expanded parent navigation services Increased outreach and education –FY09 Funding $375,000 legislative increment $125,000 Alaska Mental Health Trust Authority –FY10 Request Replace $125,000 in Trust funding with legislative increment Autism Issues and Needs Governor’s Council on Disabilities & Special Education

5-Part Autism Initiative Outcomes Gradual increase in the number of referrals for ASD 44% increase in the number who received a psych evaluation that supported ASD diagnoses Provided evaluations to all older children (age 7+) on the waitlist 50% of referrals are coming from outside the Anchorage bowl Multi-disciplinary evaluations reviews are resulting in precision diagnoses and specific recommendations and treatment plans for each individual child Parent navigators are meeting the very specific needs of each of the families they serve –Structured play dates –Use of generic resources (e.g., Boy Scouts) –Shadow services –Training in use of positive reinforcement Autism Issues and Needs Governor’s Council on Disabilities & Special Education

5-Part Autism Initiative 3.Enhanced referral and training –Contract awarded to Special Education Service Agency Public awareness, information, referral, training and consultation via on-site and distance delivery Monthly parent resource sharing teleconferences Alaska State Special Education Conference track –FY09 Funding $200,000 Alaska Mental Health Trust Authority $50,000 Department of Education & Early Development $30,000 Office of Children’s Services –FY10 Request Same as FY09 plus $150,000 legislative increment –Stone Soup Group federal earmark Social skills groups Family training, skills building and in-home coaching Training for childcare providers and babysitters Special topic workshops for families “Sib Shops” Autism Issues and Needs Governor’s Council on Disabilities & Special Education

5-Part Autism Initiative Outcomes Provided training to increase general knowledge and skills in intervention strategies to 1,211 people statewide Brought 2 nationally recognized experts to Alaska and trained 400 people statewide Training evaluation comments –“…rethinking my own practices in terms of students and families.” special education teachers –“…great ideas for implementation in my classroom.” general education teacher –“…great personal stories used to enhance new information.” parent Variety of informational materials produced –DVDs –Targeted packets and brochures –Tip cards (e.g. Early Warning Signs) Provided information to 2,000+ Health Fair participants 12 on-line trainings available Purchased autism books for 30 rural libraries Autism Issues and Needs Governor’s Council on Disabilities & Special Education

5-Part Autism Initiative 4.Workforce Training –Grant from Division of Public Health to University of Alaska, Center for Human Development Training in both behavioral and developmental evidence- based autism interventions Will be provided on-site and through distance education 3-tiered intervention system –National experts who also provide clinical oversight –Master’s level practioneers who provide day-to-day supervision –Paraprofessionals who deliver 1-on-1 intensive early intervention services Train-the-Trainer training Coordinated by Dr. Richard Kiefer-O’Donnell Stakeholders meeting held November 17 –FY09 Funding $125,000 legislative increment $125,000 Alaska Mental Health Trust Authority –FY10 Funding $125,000 legislative increment $125,000 Alaska Mental Health Trust Authority Note: the Trust will continue to provide the same level of funding in FY11 Autism Issues and Needs Governor’s Council on Disabilities & Special Education

5-Part Autism Initiative Workforce Training Developing mechanism to support 6 graduate- level Alaskans to secure distance-delivered board certification in Applied Behavioral Analysis (ABA) in exchange for participating in a state ASD Network Working on a MOA with outside university to offer Alaska-specific distance-delivered ABA for a new cohort of graduate-level students Developing in-state bachelor-level early childhood/family-centered program that matches core requirements for associate behavioral analyst certification Working on an occupational endorsement to train and certify paraprofessionals to deliver 1- on-1 behavioral interventions Autism Issues and Needs Governor’s Council on Disabilities & Special Education

5-Part Autism Initiative 5.Time-limited, intensive intervention services –25-40 hours per week for up to 3 years for children 8 (or maybe 10) years of age or younger Collected information from other states Analyzed funding options –Modifications to existing waivers –New waivers –Provisions in the Deficit Reduction Act Working with Department of Health & Social Services to identify ways to fund services through Medicaid –Identified services that could be added to current Medicaid waivers or included under existing services Social skills training, augmented communications, positive behavioral support and intensive therapy services –Identified pooled funding approach (pilot) Behavioral Health, Senior & Disabilities Services and school district –Investigating the amendment of Medicaid regulations to allow school district reimbursements for school-based intensive autism interventions provided to Medicaid- eligible students –Collected information on private insurance mandates implemented in other states Autism Issues and Needs Governor’s Council on Disabilities & Special Education

Recent Recommendations Reconvened ad hoc committee –Reviewed progress made to date –Prioritized remaining recommendations Met with State Board of Education & Early Development –Add advanced nurse practioneers to list of medical personnel that can make an autism diagnosis –Expand definition to include autism spectrum disorders Autism Issues and Needs Governor’s Council on Disabilities & Special Education

Next Steps Develop strategies for implementing best practices across different systems –National Autism Center’s National Standards Project (almost finished) Triggered by the National Research Council’s 2001 report 30 national experts Reviewing 642 research studies, including –Behavior reduction, basic skill acquisition, communication and social skill strategies, peer support with inclusive settings, functional skills, environmental/visual cueing strategies, parental strategies Comparison studies Models (multi-element treatments) Autism Issues and Needs Governor’s Council on Disabilities & Special Education