Making Change in Shifting Sand: Autism Implementation Grant and LEND Nancy Cronin, MA Maine Developmental Disabilities C

1. Making Change in Shifting Sand:Autism Implementation Grant and LENDNancy Cronin, MAMaine Developmental Disabilities CouncilAlan Kurtz, PhD Candidate

2. Types of Data

3. Types of Data Systemic Process Where are we? (What data do we have) • IDEA • MaineCare Claims Assessing the Process (Visual Mapping Tools) • Four VSM’s • Overall System • Early Identification • Early Intervention • Transition • Confirmation with National Data • Measuring the Grant Activities

4. Where Are We? What Do We Know?

5. Review of Newest Data Available • U.S. Centers for Disease Control updated its findings this year: • An average of 1 in 88 children are diagnosed with a ASD. • The growing epidemic is worldwide. (Studies in Asia, Europe and North America have identified individuals with an ASD with an approximate prevalence of 0.6% to over 1%.) • According to both MaineCare and DOE data, the prevalence of ASD diagnoses in children is increasing in all age groupsalthough growth between datasets is different. • 2009-2012 DOE data indicates a 21% increase • 2009-2012 MaineCare data indicates a 20% increase http://www.cdc.gov/ncbddd/autism/data.html

6. Current Data Provides Incomplete Picture of ASD Prevalence • DOE data only documents students who receive services under the Autism category; it does not include students served under other categories such as Other Health Impaired and Multiple Disabilities • MaineCare data reflects only those individuals who: • Were eligible for MaineCare services during the given time period • Have a primary diagnosis of ASD • DOE data and MaineCare data cannot be linked at this time to allow broader analysis of service characteristics

7. Special Education Data

10. Source: DOE ChildFindData Prepared by: Maine Developmental Disabilities Council

11. MaineCare (Medicaid)

12. Data Source: DHHS, Office of Quality Improvement Services (MaineCare Claims Data) Prepared By: Maine Developmental Disabilities Council

13. Data Source: DHHS, Office of Quality Improvement Services (MaineCare Claims Data) Prepared By: Maine Developmental Disabilities Council

14. FY11 Top 10 Services Cost Children and Youth with ASD 18 and Younger (n=3,486) DRAFT Data Source: DHHS, Office of Quality Improvement Services (MaineCare Claims Data) Prepared By: Maine Developmental Disabilities Council

15. FY11 Top 10 Services USED by Children and Youth with ASD 18 and Younger (n=3,486) DRAFT Data Source: DHHS, Office of Quality Improvement Services (MaineCare Claims Data) Prepared By: Maine Developmental Disabilities Council

16. FY11 Top 10 Services Cost Adults with ASD 19 and Older (n=1,394) DRAFT Data Source: DHHS, Office of Quality Improvement Services (MaineCare Claims Data) Prepared By: Maine Developmental Disabilities Council

17. FY11 Top 10 Services USED by Adults with ASD 19 and Older (n=1,394) DRAFT Data Source: DHHS, Office of Quality Improvement Services (MaineCare Claims Data) Prepared By: Maine Developmental Disabilities Council

18. Theory: High Cost Individuals are Served Under PNMI in Their Youth Then Transition To Section 21.Implication: Early Transition Evaluation, Budget Implications

19. Assessing the Process Overall

20. Overview of the service systems involved in early intervention for children with PDDa Department of Education Child Developmental Services (CDS) DEC Clinic Parent 4 Pediatrician 2 3 1 Children's Behavioral Health Services/ Early Childhood Division Children's Behavioral Health Services Parent Referral Represents Problem Areas identified by PDD System of Care Group aAutism Society of Maine & DHHS (2007) Report of the Pervasive Developmental Disability (“PDD”) System of Care Group

21. Overview of the service systems involved in Transition Services for Youth with PDDa Continuing Education Individual / Self Referral No Long Term Supports Vocational Rehabilitation Mental Health Long Term Supports>2SDEligible DHHS/DS Transition Planning Substance AbuseCorrectionHomelessnessCrisis Department of Education < 2SD T > 2SD Adult Protection Developmental ServicesWaiver Eligible butSlot Limited > 2SD Children's Behavioral Health Services T < 2SD Mental Health Parent Referral Substance AbuseCorrectionHomelessnessCrisis Represents Problem Areas identified by PDD System of Care Group aAutism Society of Maine & DHHS (2007) Report of the Pervasive Developmental Disability (“PDD”) System of Care Group

22. Involved All Stakeholders (Public and Private, Individual and Professional) • DHHS Division of Early Childhood • Child Developmental Services • Psychologists • Developmental Evaluation Clinics • Medical Professionals • Early Childhood Educators • Child Care Providers • Office of MaineCare Services • Children with Special Health Needs • Autism Society of Maine • DHHS Children’s Behavioral Health Services • Disability Rights Center • Parents • Department of Education • Speech and Occupational Therapists • Center for Community Inclusion and Disabilities Studies • Developmental Disabilities Council • State Office of Information Technology • Over 200 individuals with PDD, family members, and professionals as commenter's Maine Developmental Disabilities Council

23. Customer Focused!Stakeholder Driven!Nobody likes being told how to do their job better

24. Value Stream Mapping4 Full Days • Family Group - Current System Map • Stakeholder Group (includes a smaller group of families) – Current System Map, Future System Map, Implementation Plan • Report drafted, vetted and finally approved by stakeholder group and all families Maine Developmental Disabilities Council

25. Early Identification

26. Family Experience of Current System

27. Identification of unmet needs and frustrations with current system Parents’ Committee documented their families’ experiences with getting a diagnosis and made recommendations to correct systemic problems. Input solicited and received from other families corroborated systemic problems identified. Family Input The family stories document that obtaining a diagnosis takes an average of 31 months.

28. Provider Experience of Current System

29. Workgroup Future System

30. Summary of Workgroup’s Recommendations • Public awareness/education campaign • Universal Screening • Efficient referral for diagnostic evaluation by a qualified medical provider • Prompt referral to early intervention services

31. Early Intervention

32. DHHS Children’s Behavioral Health Services Division of Early Childhood Office of MaineCare Services DOE 2 Statewide Representatives Child Developmental Services CDS of Cumberland County Two Rivers CDS DAFS Office of Information Technology Service Providers Occupational Therapist Speech Pathologists Early Intervention Services Providers Center for Community Inclusion Private Preschool Providers Families/Advocates Autism Society of Maine Parents State Agency/Stakeholder Workgroup15 participants representing:

34. X

35. Summary of Workgroup’s Recommendations • Statewide registry entity • Comprehensive data system to capture DOE & DHHS systems information • Creation of a specialized case coordinator position • Consolidation of planning meetings • Development of universal forms • Development of Treatment/Intervention reference tool • Utilization of tele-medicine techniques to coordinate and oversee therapies • Compilation of State resources by local area for early intervention practitioners

36. Commenter Feedback • Forty-one commenters provided feedback on the Early Intervention Report (the total Commenter “pool” for various aspects of the PDD Initiative is now 160.) • Commenters confirmed report findings that the system is fragmented and uncoordinated. • Many families submitted very positive comments about CDS services. • Families indicated that although their child was MaineCare eligible, they did not know they could access other services through DHHS. • Assure that Child Welfare is represented in future work. 25% Return Rate

37. Transition To Adulthood

38. Identification of unmet needs and frustrations with the current system Parents’ committee documented their families’ experiences transitioning from education and children’s service systems to community supports and other adult services, and made recommendations to correct systemic problems. Input solicited and received from other families corroborated systemic problems identified. Family Input In the stories documented, 80% of the youth did not have a transition plan. The other 20% had transition plans without goals and with no connection to any adult services except Vocational Rehabilitation. (The Vocational Rehabilitation connection did not occur until after the youth turned 18.)

39. DHHS Division of Early Childhood MaineCare Services Children with Special Health Needs Children’s Behavioral Health Services DOE Child Developmental Services Project PEDS CDS of Penobscot County Reach School, Portland Service Providers Child Care Providers Head Start Nurse Practitioners Psychologist Developmental Evaluation Clinics Developmental Pediatricians Families/Advocates Autism Society of Maine Parents State Agency/Stakeholder Workgroup18 participants representing:

40. Provider Experience of Current System

41. Workgroup Future System

42. “Thank you for sending along the report from the transition work group.  I think it is quite thorough.  I thought the visuals were very helpful and especially appreciated that families shared their stories.  I hope that the Commissioners will understand that these represent so many other families!  …Transition is one thing, but if there is little of quality or even adequate to transition to, the point of transitioning is completely lost.  My experience and observations are that a sufficient and qualified pool of support people doesn't exist, aren't paid or supported well enough, etc.  Right now my husband and I feel like the most realistic plan for our daughter's future is that we must never become ill and must never die OR we should clone ourselves.  I know that seems absurd, but it is not said necessarily in jest.  I'm sure many other families relate to those kinds of sentiments, nor is it new to you.”  (Parent)

43. Postsecondary Transition For Youth with ASD in Maine Peer to Peer Meeting Association of Maternal and Child Health Programs Mystic Connecticut, August 7-9, 2013

44. What are Good Transition Outcomes? • Employment • Education or Training Necessary to Achieve One’s Life Goals • Community Living • Satisfying Social Life and Friendships • Happiness

45. Evidence Based Transition Practices • Collaboration • Teaching Self-Determination • Work Experience and Training • Student-focused Planning • Active Family Involvement • Assistive Technology

46. Obstacles for Youth With ASD and Their Families • Lack of Information for Families about Adult Services and Supports. • Difficulty Communicating Interests Preferences, and Concerns. • Difficulty Participating in Planning Meetings. • Anxiety about the Future.

47. Transition-related Issues reported by Maine families of youth with ASD

48. PDD Transition Workgroup • Organized by MDDC. • Conducted focus groups with six Families. • Convened and mapped current transition process. • Reviewed summaries of focus groups and developed plan for future system.

49. In general youth with ASD enter adult life without: • A plan for housing; • Community supports; • Employment; • Educational supports; • A plan of coordinated supports involving DHHHS, DOE, and DOL.

50. No Transition Plan!! • Five families reported that at some time their children did not have the required transition plan or transition goals. • Two with Asperger’s, one autism and nonverbal, one with autism and one with PDD-NOS.