Putting the ‘S’ in EPSDT: Early Developmental Screening in Alaska November 2010  AMCHP Webinar

1. Putting the ‘S’ in EPSDT: Early Developmental Screening in AlaskaNovember 2010  AMCHP Webinar

2. The Governor Council on Disabilities and Special Education2005 Alaska State Autism Plan Autism Ad Hoc Committee

3. Alaska State Autism Plan Successes • Universal Screening • - State EPSDT Coordinator • - Alaska Native Tribal Health System Relationships • - PHN Training on MCHAT • Diagnostic Clinic Expansion • - PADN opens • - Outreach Screening Clinics Expand • Enhance Referral and Training • - SESA’s Alaska Autism Resource Ctr in Anchorage & Fairbanks opens • - SSG – Family Resource Center earmark • Workforce Training • - Academic Developments and 12 Module Set Development • - LEND planning grant award • - Early Intervention – Highly Qualified Worker Goals • - Awareness Campaign: PSA, Autism Awareness Month & Website • - Trainings, seminars, and workshops • Time Limited Intensive Autism Services • - 2010 AUCD February Regional Summit and June State Plan Continuation • - Agreement on definition of intensive intervention

4. Combating Autism Act Initiative Alaska State Implementation Grant Goal #1: In rural Alaska, develop new processes to support the system of early identification, developmental screening and diagnosis of childrensuspected with autism and other neurodevelopmental disorders – partner with Part C services,Providence Autism Diagnostic Network, Head Start, Alaska Tribal Health Systems, EPDST Coordinators, Department of Education and Early Development, etc Goal #2: Children 0 to 3 will be successfully connected with early intervention services and a medical home, leading to earlier initiation of services Goal #3: The project will be aligned with goals established by the Autism Alliance and the Early Childhood Comprehensive Systems (ECCS) plan to assure continuity and work collaboratively on a long term sustainability plan

5. Early Periodic Screening Diagnosis and Treatment (EPSDT) Pediatric Neurodevelopmental Outreach & Autism Screening Clinics Providence Autism Diagnostic Center (PADN) SOA Autism Plan / Combating Autism Act Initiative / State Demonstration Grant

6. Early Periodic Screening Diagnosis and Treatment (EPSDT) EPSDT is the child health component of Medicaid. EPSDT is required in every state and is designed to improve the health of low-income children, by financing appropriate and necessary pediatric services. EPSDT is designed to address physical, mental, and developmental health needs. http://www.hrsa.gov/epsdt/

7. 2006 State Leadership Workshop on Improving EPSDT through Medicaid & Title V Collaboration Alaska’s Five Priority Action Steps: Improve data integration Strengthen the network of community care coordinators Implement a quality initiative related to EPSDT screens Develop parent-focused initiative to boost parent informing and engagement Support cross system training MCHB-HRSA funded project, May 2006

8. Putting the “S” in EPSDT :Early Developmental Screening in AlaskaAMCHP Peer to Peer Exchange – Fairbanks October 2010: Tribal Health and State Leaders met in to discuss EPSDT curriculum development for rural health care providers Seven Tribal Health Organizations (THOs) attended representing 80%+ of AK rural health care providers Most of Alaska’s 17 major THOs have no mechanism for EPSDT specific training for rural health care providers Two THOs presented new curriculum developments to share with other organizations wishing to enhance EPSDT services State of Alaska offered materials and support on developmental screening tools (ASQ-3, AAP Guidelines, First Signs) to interested organizations

9. MCHB-HRSA Resources for State EPSDT Program Development 2009 Final Report on State Leadership Workshops on Improving EPSDT Programs Collaboration & Action to Improve Child Health Systems: Discussion Guide & Toolkit

10. The Future of EPSDT in Rural AK Build on Successes: Address Challenges: Increase training and TA to address Rural health care provider overload/burnout Build Relationships to reduce silos and barriers (i.e. Tribal Health & Part C) Raise Awareness and Educate stakeholders related to importance of developmental screening OutreachScreening Clinics and technology to maximize limited provider resources… • Renewed Partnerships with and among Tribal Health Systems • Support from Tribal Health Consortium to integrate evidence based developmental screening into training manual revision and clinical practice

11. Early Periodic Screening Diagnosis and Treatment (EPSDT) Pediatric Neurodevelopmental Outreach & Autism Screening Clinics Providence Autism Diagnostic Center (PADN) SOA Autism Plan / Combating Autism Act Initiative / State Demonstration Grant

12. Pediatric Neurodevelopmental Outreach & Autism Screening Clinics A community-based presentation is usually offered one of the clinic evenings. Staff are available for presentations to providers, agencies, & parent groups on new developments in autism services in Alaska. Skills-based training for providers, agencies, business schools, & clinics, are available.

13. Pediatric Neurodevelopmental Outreach & Autism Screening Clinics • Preliminary 2010 Clinical Summary • Approximately 75 % referred to screening clinics are autism/ASD R.O. • About 60% referred to diagnostic center in Anchorage for multidisciplinary evaluation • The balance are referred for PDD, ADD/ADHD, and Fetal Alcohol Syndrome/Effect (FAS/E)

14. Dillingham Current population, 2264 Traditionally a Yup'ik Eskimo area with Russian influences, Dillingham is now a highly mixed population of non-Natives and Natives. The outstanding commercial fishing opportunities in the Bristol Bay area are the focus of the local culture.

15. Bethel Current population, 5803 The region is fortunate in that rapid development did not occur before the importance of protecting Native culture was realized. The traditional Yup'ik Eskimo practices and language remain predominant in the area. Subsistence activities and commercial fishing are major contributors to residents' livelihoods.

16. Fairbanks Current population, 32,506 Serves as the regional service and supply center for Interior Alaska, a diverse economy includes city, borough, state, and federal government, transportation, communication, manufacturing, financial, and regional medical services. Tourism and mining also comprise a significant part of the economy. Approximately 325,000 tourists visit Fairbanks each summer

17. Kenai Peninsula Current population, 53,602 The Kenai Peninsula, located 60 air miles south of Anchorage; the Kenai River is a major sport fishing location for Anchorage residents and tourists. The area has a well-capitalized infrastructure of airports, sports, roads, public schools, and energy-related facilities. The economy of the borough consists of heritage industries, including commercial fishing, mining, and timber, as well as tourism and petroleum industry activities.

18. Valdez Current population, 4498 During the 1964 earthquake, the original city waterfront slide into the ocean, killing several residents. The community was rebuilt on a more stable bedrock foundation four miles to the west. During the 1970s, construction of the Trans-Alaska Oil Pipeline brought rapid growth to Valdez. In March 1989 it was the center for the massive oil-spill cleanup after the "Exxon Valdez" disaster. In a few short days, the population of the town tripled.

19. Kodiak Current population, 6626 The local culture surrounds commercial and subsistence fishing activities. The US Coast Guard comprises a significant portion of the community, and there is a large seasonal population. Kodiak is primarily non-Native, and the majority of the Native population are Alutiiq. A significant Filipino population as a subculture also exists. A Russian Orthodox church seminary is based in Kodiak, one of two existing seminaries in the U.S.

20. Barrow Current population, 4119 The majority of residents are Inupiat Eskimos. Traditional marine mammal hunts and other subsistence practices are an active part of the culture. Bowhead, gray, killer, and beluga whales migrate near Barrow each summer. The sale of alcohol is banned in the community, although importation and possession are allowed.

21. Ketchikan Current population, 7503 Ketchikan is a diverse community; most Native residents are Tlingit. The largest collection of totem poles in the world is found here. Ketchikan has a diverse economy and is a major port of entry into Southeast Alaska. Ketchikan is supported by a large fishing fleet, fish processing, tourism, and timber. Mainly cruise ships passengers, though also some independent travelers, visit Ketchikan

22. Juneau Current population 30,661 As the state capital, Juneau is supported by state and federal employment and by tourists cruising the Inside Passage. Over 690,000 visitors arrive by cruise ship and another 100,000 independent travelers visit Juneau each year. Juneau has a Tlingit history with a strong historical influence from the early prospectors and boomtown that grew around full-scale gold mining operations. The Mendenhall Glacier and Mount Roberts Tramway are local attractions. Support services for logging and fish processing contribute to the Juneau economy.

23. Kotzebue Current population, 3154 The residents of Kotzebue are primarily Inupiat Eskimos, and subsistence activities are an integral part of the lifestyle. Each summer, the North Tent City fish camp is set up to dry and smoke the season's catch. In 2009, Kotzebue became a "wet" community, allowing the sale of alcohol at the city-own liquor store. Due to its location at the confluence of three river drainages, Kotzebue is the transfer point between ocean and inland shipping.

24. Nome Current population, 3468 Gold discovered in Nome in 1898 by surveyors turned an isolated stretch of tundra into a tent city of 20,000 prospectors, gamblers, claim jumpers, saloon keepers, and prostitutes The population of Nome is a mixture of Inupiat Eskimos and non-Natives. Subsistence activities are prevalent in the community. Nome is the finish line for the 1,100-mile Iditarod Trail Sled Dog Race from Anchorage, held each March

25. Early Periodic Screening Diagnosis and Treatment (EPSDT) Pediatric Neurodevelopmental Outreach & Autism Screening Clinics Providence Autism Diagnostic Network (PADN) SOA Autism Plan / Combating Autism Act Initiative / State Demonstration Grant

26. Providence Autism Diagnostic Network(PADN) Autism Diagnosis Overview: Multi-disciplinary neurodevelopmental assessment Review child's medical and developmental history Test child; observe and examine Summary report and recommendations given to parent during a meeting where the parent navigator participates and takes notes. PN works to link family and child to community supports, resources and providers Staff Pediatric Neurodevelopmental Specialists Pediatric Advanced Practice Nurse Practitioner SSG parent navigation staff Ancillary: Pediatric Therapies (OT, PT, Speech) Pediatric psychologists Pediatric Neurologists State Board of Education & Early Development adds ANP to list of medical personnel that can make an autism diagnosis; accepts for service needs

27. Providence Autism Diagnostic Center(PADN) Averages based on SOA PADN Grant Reports Seeing steady increase in number of children coming in for diagnosis with booking for full diagnostic workup about 6-weeks out The clinic sees approximately 15 children a month for a full workup and another 15 children for ASD screenings; the balance of children have PDD and other neurodevelopmental challenges. Approximately 75% of the children evaluated are diagnoses on the ASD continuum Approximately 35% of children have access to private insurance, including Tricare; 60% are DKC or Medicaid; and the 5% balance are self-pay. Most children come from the Anchorage bowl, then Fairbanks, Kenai, and finally from “Rural Alaska.” Reporting procedures cannot tease out and make direct correlation for the referrals made by the PND outreach and screening clinics

28. Challenges and Gaps Meeting the needs of Rural and Urban Alaskans • Cultural sensitivity & tribal diversity • Family and community readiness for the ASD DX • Access to services that meet the family needs • Transition needs • Ability to pay for services • Develop a highly qualified workforce. • Keep trained and experienced staff to live and work in remote areas Distance, costs, and access to services • Funding the service delivery

29. The Impact of a Comprehensive Autism Plan in Alaska …..Chapter 2 an enhanced statewide access to a fully developed comprehensive and culturally sensitive system of care so that Alaskans with ASD and related developmental disabilities will reach their full potential through timely and coordinated transitional planning.

30. Thank you! Kris Green State of Alaska - Autism & Parent Services Manager Kristine.Green@alaska.gov & Jimael Lawson State of Alaska - Combating Autism Public Health Specialist Jimael.Lawson@alaska.gov 907-269-3400