Making Change in Shifting Sand: Autism Implementation Grant and LEND Nancy Cronin, MA Maine Developmental Disabilities Council Alan Kurtz, PhD Candidate Types of Data 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 Where Are We? What Do We Know? 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 groups although 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 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 Special Education Data Comparative trends in the # of children served in Maine public schools under the Special Ed category of Autism as compared to the total # of Students in Maine 220000 215000 3500 2,989 212,957 3000 2,801 210,946 210000 2,646 209,745 207,517 205000 2,471 2500 205,000 2,231 202,417 201,912 200000 1,990 Axis Title 2000 1,760 195000 194,545 1,471 190000 1,255 188,686 1,018 185000 180000 1500 189,140 846 594 185,033 2 year increase of 13% 712 10 year increase of 253% Average Annual Increase of 15% 1000 500 175000 170000 0 2000 2001 2002 2003 2004 2005 2006 Entire School Population 2007 Autism 2008 2009 2010 2011 2012 Special Education Category Distribution Over Time 100% 1167 1063 594 90% 759 674 2801 3834 2486 80% 2865 2909 70% 2650 Developmentally Delayed 5930 60% Intellectual Disability Autism 50% 9734 Emotional Disability Multiple Disabilities 40% 6892 Other Health Impairment Speech and Language Impairment Specific Learning Disability 30% 20% 13143 9229 10% 0% 2000 2011 Growth in # of Students Serviced By Maine Public Schools in Autism Category 250 (A Large Percentage But Not All Students with PDDs Are Included) 200 150 2007 2011 100 50 0 3 4 Source: DOE ChildFindData 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 Prepared by: Maine Developmental Disabilities Council MaineCare (Medicaid) 20% Growth Between FY 2009 and FY 2012 in Number of Individuals with an ASD Whose Claims Were Paid Through MaineCare 2500 2000 1934 Total 2009 - 4,164 75% under the age of 21 1653 1500 Total 2012 - 5,381 60% under the age of 21 FY 2009 1193 FY 2012 1000 933 585 609 565 462 500 327 300 224 119 90 108 85 132 46 106 26 48 0 0-2 3-5 6-12 13-17 18-20 21-29 30-39 Data Source: DHHS, Office of Quality Improvement Services (MaineCare Claims Data) 40-49 50-59 >60 Prepared By: Maine Developmental Disabilities Council Ratio between Males and Females Receiving MaineCare in FY 2011 Female 23% Male 77% Data Source: DHHS, Office of Quality Improvement Services (MaineCare Claims Data) Prepared By: Maine Developmental Disabilities Council FY11 Top 10 Services Cost Children and Youth with ASD 18 and Younger (n=3,486) DRAFT 1 Section 28 (Both Schools and Community Modifier HI & HK) $ 14,636,871.60 2 Section 97 PNMI $ 7,508,013.07 3 Section 13 TCM $ 3,957,813.78 4 Section 65 School $ 3,922,420.20 5 Section 65 $ 2,437,507.57 6 Section 97 PNMI Child Welfare $ 640,101.70 7 Medical $ 555,259.47 8 Section 28 $ 332,087.51 9 Speech Therapy $ 259,510.77 10 Occupational Therapy $ 240,897.36 Data Source: DHHS, Office of Quality Improvement Services (MaineCare Claims Data) Prepared By: Maine Developmental Disabilities Council FY11 Top 10 Services USED by Children and Youth with ASD 18 and Younger (n=3,486) DRAFT Number of Individuals who Utilized Procedure Percentage of Population Diagnostic Testing 1808 52% Section 13 TCM 1665 48% Medical 1592 46% Section 28 - School? (Mod HI and HK) 1142 33% Section 65 1036 30% Psychological Testing 562 16% Occupational Therapy 459 13% Speech Therapy 451 13% Mental health 344 10% Section 65 School 338 10% Procedure Data Source: DHHS, Office of Quality Improvement Services (MaineCare Claims Data) Prepared By: Maine Developmental Disabilities Council FY11 Top 10 Services Cost Adults with ASD 19 and Older (n=1,394) DRAFT 1 Section 21 $ 6,952,868.64 2 Section 97 PNMI $ 2,627,708.66 3 Section 28 - School? (Mod HI and HK) $ 1,290,276.73 4 Section 21 or 29 $ 870,005.08 5 Section 65 School $ 522,160.88 6 Section 13 TCM $ 520,131.06 7 Section 17 - Mental Health $ 366,063.99 8 Section 65 $ 294,150.54 9 Section 97 PNMI Child Welfare $ 187,829.30 10 Medical $ 136,677.47 Data Source: DHHS, Office of Quality Improvement Services (MaineCare Claims Data) Prepared By: Maine Developmental Disabilities Council FY11 Top 10 Services USED by Adults with ASD 19 and Older (n=1,394) DRAFT Medical Section 65 Med Management Section 65 Section 17 - Mental Health Psychological Testing Section 13 TCM Diagnostic Testing 19 and Over 582 437 300 291 270 237 158 % of Population 42% 31% 22% 21% 19% 17% 11% 89 89 74 6% 6% 5% Section 28 - School? (Mod HI and HK) Section 21 Section 21 or 29 Data Source: DHHS, Office of Quality Improvement Services (MaineCare Claims Data) Prepared By: Maine Developmental Disabilities Council Theory: High Cost Individuals are Served Under PNMI in Their Youth Then Transition To Section 21. Implication: Early Transition Evaluation, Budget Implications # People % of the Section 97 PNMI Using Service Age Group 5 and Under (n=472) - - - # People % of the Using Age Service Group Section 21 - - - 6-10 (n=1,167) $ 250,228.31 8 1% 11-18 (n=1,847) $ 7,257,784.76 87 5% 19-21 (n=427) $ 2,184,037.43 25 6% $ 560,255.77 15 4% 22-29 (n=474) $ 154,985.52 2 0% $ 3,183,631.21 46 10% 30-39 (n=214) $ 82,910.21 2 1% $ 1,956,446.13 22 10% 40-49 (n=140) $ 49,792.82 2 1% $ 573,811.22 10 7% 50-59 (n=86) $ 47,807.00 1 1% $ 255,790.39 4 5% 60-69 (n=36) $ 91,910.07 3 8% $ 422,933.92 7 19% 70 and Over (n=17) $ 16,265.61 1 6% Assessing the Process Overall Overview of the service systems involved in a early intervention for children with PDD 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 Autism Society of Maine & DHHS (2007) Report of the Pervasive Developmental Disability (“PDD”) System of Care Group a Overview of the service systems involved in Transition Services for Youth with PDDa Continuing Education Individual / Self Referral Vocational Rehabilitation Mental Health Department of Education Transition Planning T < 2SD > 2SD No Long Term Supports Long Term Substance Abuse Supports Correction >2SD Homelessness Eligible Crisis DHHS/D S Adult Protection Developmental Services Waiver Eligible but Slot Limited > 2SD Children's Behavioral Health Services T < 2SD Parent Referral Represents Problem Areas identified by PDD System of Care Group Mental Health Substance Abuse Correction Homelessness Crisis Autism Society of Maine & DHHS (2007) Report of the Pervasive Developmental Disability (“PDD”) System of Care Group a 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 Customer Focused! Stakeholder Driven! Nobody likes being told how to do their job better Value Stream Mapping 4 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 Early Identification Family Experience of Current System Parent PDD/Autism Current Experience of the Process Developmental / Behavioral Concerns Birth We Worry We Beg Wait and See Observation Developmental Domain Report – Eligibility Meetings Speech Therapist Report Meetings Occupational Therapist Report Meetings Develop mental Therapy Report Meeting s Diagnostician Report Meetings 1m Physician 1m Doctor Doctor 1 Year 3 Months Diagnostician 1 Month 1 Year 1 Month 1 Month 3 Months 1 Year Referral to Diagnostician 3 Months CDS Some Developmental Delay Referral to CDS Eligibility Assessment Multi-Disciplinary Evaluation IFSP/IEP 3w Speech Therapy Therapies 3w Physical Therapy 3w Speech Therapy 3w Speech Therapy 3w Medical Specialist 3w 3w Occupational Therapy Audiologist 3w Developmental Therapy Slow Weight Gain Tubes Slow Weight Gain Food Issues Food Issues Medical Issues Food Issues GI Problems GI Problems MULTIPLE SPECIALIST VISITS GI Problems MULTIPLE SPECIALIST VISITS Seizures Seizures Seizures Medications Medications Medications Birth = Wait Time = Wait Time = Decision Point = Decision Point Diagnosis/Rule Out Family Input Identification of unmet needs and frustrations with current system 1. Parents’ Committee documented their families’ experiences with getting a diagnosis and made recommendations to correct systemic problems. 2. Input solicited and received from other families corroborated systemic problems identified. The family stories document that obtaining a diagnosis takes an average of 31 months. Provider Experience of Current System Entity/ Function Current State Bookend Behavior concrn Gathering Data Family, caregivers, etc CT ST PCP Bookend Diagnosis or Rule out 1d 1,826 B W A 240m 600 420 Professional Consultation 1d 20 365d 20m 120 d Parental Processing Screening Formal Screening with PCP 30d 15d 0-3 years 20 960 60m 60m CDS Screening 7d 21d 9.5d 60m 180 120 0-3 Eligibility determination 16d 60 3-5 years 240d 540d 15d 15d 480m 60m CDS Evaluation(s) PCP Referral 16d 16d 60 60 3-5 Domain Specific Eligibility determination 21d 240m 38.5d 56d 240 240 720 Workgroup Future System Entity/ Function Future State Bookend Diagnosis or Rule out Bookend Behavior concrn Family, caregivers, etc 1 PCP Universal Screening at Well Child Visit 0-3yr 2 PCP Referral 3 Evaluation(s) 2 wks – 3 Months CDS CDS / Services Summary of Workgroup’s Recommendations 1. Public awareness/education campaign 2. Universal Screening 3. Efficient referral for diagnostic evaluation by a qualified medical provider 4. Prompt referral to early intervention services Early Intervention State Agency/Stakeholder Workgroup 15 participants representing: 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 33 X 34 Summary of Workgroup’s Recommendations 1. Statewide registry entity 2. Comprehensive data system to capture DOE & DHHS systems information 3. Creation of a specialized case coordinator position 4. Consolidation of planning meetings 5. Development of universal forms 6. Development of Treatment/Intervention reference tool 7. Utilization of tele-medicine techniques to coordinate and oversee therapies 8. Compilation of State resources by local area for early intervention practitioners 35 Commenter Feedback 25% Return Rate 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. 36 Transition To Adulthood Family Input 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. 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.) State Agency/Stakeholder Workgroup 18 participants representing: DHHS ◦ ◦ ◦ ◦ Division of Early Childhood MaineCare Services Children with Special Health Needs Children’s Behavioral Health Services DOE Service Providers ◦ ◦ ◦ ◦ ◦ ◦ Child Care Providers Head Start Nurse Practitioners Psychologist Developmental Evaluation Clinics Developmental Pediatricians Families/Advocates Child Developmental Services ◦ Project PEDS ◦ CDS of Penobscot County ◦ Reach School, Portland ◦ Autism Society of Maine ◦ Parents Provider Experience of Current System 14 years old 15 years old 16 years old 17 years old 18 years old 19 years old 20 years old IEP IEP IEP IEP IEP IEP IEP ISP ISP ISP ISP ISP ISP ISP CP CP(V9) CP(V9) CP(V9) CP(V9) Intake ADS PCP PCP PCP Elligibilit y ISP ISP ISP IPE IPE DHHS AMH DHHS ADS DHHS ChildWelfare DHHS CBH Education / Department of Education PDD/Autism Transition Depart ment of Department Medical of Labor Correct ions Pre Intake Planning 21 years old PCP Case Planning Community and Facility Case Planning Medical Needs Post Seconda ry Other Educatio n Receive Referral (Optional) Application for Eligibility Wait list SSI Applications to Schools 14 years old Comprehensive Assessment IPE Guardianship Post Secondary Planning 21 Adult receives eligible services Workgroup Future System 14 years old 15 years old 16 years old 17 years old 18 years old 20 years old 21 years old 2 1 Parent Awareness & Information 4 Intake Processing Identification 6 5 First Transition Meeting 7 Case Manager Assigned 8 Iterative Annual Review 9 Eligibility Determination for Adult Services 10 Implementation of Plan Feedback 3 Transition Coordinator Assigned 11 ONGOING Professional Development Parent Information/Support Youth Self Advocacy Training 21 Adult receives eligible services Youth turns 14 2. Parent notified and made aware of the transition process. 4. Intake Process The child is asked what they want to be when they grow up. Child is assessed to determine goals and strengths 1. Youth Identified. Need for Transition Plan Established. 3. Education Transition Specialist assigned. Sends parents an information packet with contact names, roles, and roadmap. In addition, who to cal when plan is not being followed on or where to go when they are getting conflicting information 5. One Information Source One Plan that combines all required data by each participating agency. Collateral providers should attend meetings so plans can be coordinated so they meet the youth and family needs. Parents will help decide who is involved and how much information is shared. Family meets with Transition Specialist at a computer and enters data into a “kick butt” software system. Youth attends the meeting or has a meaningful way to provide input to the meeting. Information recorded in the database is accessible by all agencies serving the youth. Plan includes: Course of study leading to the child’s goals established. Crises Plans Treatment Plans Permanency Plan VR/IPE or other employment Waiver requirements Post Secondary Education Education to youth on rights and responsibilities Health Legal Services Insurance Community Integration Housing SSI Guardianship There is a website that demonstrates types of data to be asked. Meeting to develop plan and timeline of what needs to be done when. 7. 6. If youth does not have one, refer for a case manager. Case Manager understand s all systems and services available under each domain. Case Manager assigned to follow up on tasks in plan. Beginning at age 15, rinse and repeat. Annual updates/ changes by all parties. Meet more frequently if necessary, for example if there is a placement change.) At age 16 Applications to DOL and all relevant adult services including SSI. Apply for Voc Rehab, receive a letter of receipt and receive a letter of determination. Notify adult agencies and have these agency people at IEP / Transition meetings. Begin talking about when graduation will occur. 8. 9. 10 Child services integrates with adult services between the ages of 18 and 21 to provide transition support. Actualization of the plan. (Yea! It works!) 360 Feedback loop about process Quality assessment of client satisfaction informs process improvement. Supports are available Plans in place for ALL services prior to graduation / school exit. Requirement for planning process to continue by DHHS case manager after exiting school – if necessary. 11 ONGOING Training for all involved representatives in overall process and best practice. Community Supports Health Providers Post Secondary Ed Reps Ongoing parent information Parent support groups. “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) 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 What are Good Transition Outcomes? • Employment • Education or Training Necessary to Achieve One’s Life Goals • Community Living • Satisfying Social Life and Friendships • Happiness Evidence Based Transition Practices • • • • • • Collaboration Teaching Self-Determination Work Experience and Training Student-focused Planning Active Family Involvement Assistive Technology 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. TRANSITION-RELATED ISSUES REPORTED BY MAINE FAMILIES OF YOUTH WITH ASD 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. 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. 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. Late Transition Planning • Student with PDD-NOS – started in senior year. • Student with autism – transition goals for first time in 5fth year of HS. Inadequate transition planning • Parents told by school that “they” should be focusing on transition. • Goals and services are not designed to reasonably assist student in achieving her or his goals* • Goals not based on student’s interests* Poor secondary education supports • Entered postsecondary education without any plan for support. • Students with ASD and families have been provided no information on how PSE supports differ from those provided under IEP.* No job preparation • Job preparation will start when he is 17. • Failure of school to provide requested prevocational training. • Parents found job for child on their own. Lack of support from VR • VR slow to respond • Told that they would get involved in Spring of senior year • Could not get support from VR without long-term supports from DHHS • Determined services would not be provided because she was not “school/work ready” and could not drive. Lack of Knowledge About Adult Services • School personnel unaware of various adult services and roles of agencies. • Parents had to learn about adult services on own. • Inability of school to identify programs appropriate for son. • Adult services “non-existent” (person with AS). Difficulty Obtaining Adult Services • Difficulty obtaining case management services. • DHHS denies services. • Put on waiting list. Lack of expertise - school • Inaccurate diagnosis – denied special education services. • Did not know how to address mood/emotional problems. • Lack of effective programming. • Inconsistent program from year to year. • Staff turnover diluted program. Lack of expertise – school (2) • No effective accommodations, bullying, failed to graduate. • Nonverbal student with autism expelled from school. Lack of expertise – adult services • No training on ASD • No training on specific needs of individual with ASD • Inadequate staffing • Safety issues Health Care • Lack of quality medical care • Difficulty qualifying for Maine Care (Medicaid) • Medication issues Case Management Problems • Difficulty obtaining case manager • Losing case manager • Case manager with little understanding of needs or services Housing Issues • Helped to find apartment but lost it because of lack of support (moved home) • Family had to sell house to buy a group home. • Temporary housing for year and a half • No plan for housing after foster home closed Collaboration • Schools and adult agencies are not talking with each other. • No one appears to take responsibility.* Maine State Professional Development Grant – Goal 5 • Maine DOE OSEP-funded five-year grant • To increase the percentages of SAU special education and related services personnel who can develop and implement effective, compliant transition plans and activities within timelines (IDEA Indicators B12, B13, and C8). Confirmation A Sampling of Government and Private Reports or Studies on PDD and Employment/Transition Issues • 32nd Institute on Rehabilitation Issues (2007) Rehabilitation of Individuals with Autism Spectrum Disorders www.autisminfo.org/2007_employment_&_ASD_report.pdf - fffs • Autism Society of America (2004) “Life After High School.” Retrieved March 20, 2008 http://www.autismsociety.org/site/PageServer?pagename=about_lwa_highschool • Grandin, T. (1996) “Making the Transition from the World of School into the World of Work.” Center for the Study of Autism website: Retrieved March 20, 2008 http://www.autism.org/temple/transition.html • Muller, Eve (2004) “Autism: Challenges Relating to Secondary Transition, NASOSE Project Forum • Muller, Schuler, Burton & Yates (2003) Meeting the vocational support needs of individuals with Asperger Syndrome and other autism spectrum disabilities. Journal of Vocational Rehabilitation, 18, 163-175 • Sullivan, R. (2001) “Position Paper on the National Crisis on Adult Services for Individuals with Autism: A Call to Action.” San Diego, CA: Autism Society of America • Sicile-Kira, Chantal(2006) Adolescents on the Autism Spectrum. The Berkley Publishing Group, New York DOE DHHS 2007 32nd Institute on Rehabilitation Issues,Spectrum Disorders, Key Areas of Transition Planning 4 Communication Considerations Behavioral Considerations Medical and Behavioral Health Care Nutritional Balance Spiritual Health Community Post Secondary Education and Training Employment Living Arrangements Recreation/Leisure Opportunities Physical Capacities 4. 2007, Rehabilitation Services Administration: 32nd Institute on Rehabilitation Issues, Rehabilitation of Individuals with Autism Spectrum Disorders DOL Early Identification Recent studies continue to document that early identification and early intervention lead to better outcomes for children with Autism and other ASDs July, 2009: Early identification, diagnosis, and intervention has huge implications for the developmental outcome of children with autism and other PDDs. We're seeing this in a very real way through our follow-up study, (Dr. Margot Prior, Melbourne La Trobe University, ) http://www.abc.net.au/news/stories/2009/07/23/2634744.htm 69 Moving Us Forward Legislature – Motivation Steering Group (State Ownership) Bi-Annual Joint Meeting with: • Commissioner DHHS • Commissioner DOE • Commissioner DOL Moving Us Forward Initial Plan: Develop and Implement Standardized Screening and Referral Process Medical Professionals discussed and agreed upon Screening Tools and a Potential Referral Process State Commissioners approved pilot project Field Test of the Screening Tools (in 7 medical practices – over 3,500 children screened) Took the Show on the Road (first tour) State Implementation Grant for Improving Services for Children and Youth with ASD 3-Year Grant ~300K annually Improve health outcomes by identifying early, providing effective, a coordinated treatment, and a long term comprehensive medical home. So – Year 3? What have we done? What are we going to do now? Grant: Educate on Screening, First Signs, Next Steps, & Supporting Families Provide training on how to use the M-CHAT to screen children for ASD Creation, by Developmental Pediatricians, Parents and Advocates, of a DVD and supporting train-the-trainer curriculum Over 300 DVDs and train-the-trainer curriculum have been distributed Over 170 Early Childhood Professionals attended train-thetrainer presentations Provide trainings to medical professionals Over 150 Medical Practitioners received training on the Autism Screening Tool through Grand Rounds How Do We Know? • 600% Increase of MaineCare Claims for Developmental Screening Between 2009 and 2012. But… Contamination of Data MaineCare created Medicaid Codes to pay for screenings Type of Code Code Screening Tool Amount CPT 96110 ASQ/PEDS $8.99 CPT 96110-HI M-CHAT $8.99 CPT 96111-HK M-CHAT 2 $86.59 Grant: Expedite Identification and Facilitate Treatment Develop streamlined protocols for referrals and communication between diagnosticians and entry into Maine’s early intervention system. Facilitating Autism Screening and Treatment Database Data Entry Module Complete Reporting Module in Process Testing How to Connect with EMR to Eliminate Data Entry Connect through IMMPACT II Improve Capacity of Doctors Expand the capacity of general practitioner’s and Pediatricians to provide follow-up care to children and youth with ASD. Contracted with Developmental Pediatricians to Develop Curriculum “The area of greatest impact was the striking increase in attendees’ ratings of their own knowledge about all aspects of autism recognition and care. Prior to the workshops they showed little confidence, rating themselves, on average, as having little knowledge or being only familiar with all topics related to ASDs, whereas after the workshops self-ratings of ‘knowledgeable’ or ‘very knowledgeable’ were given by the majority for distinguishing the ASDs, providing medical treatment, and giving behavioral guidance, and by almost half of attendees for educational advocacy.” Spread the Word – 10 more practices this year to receive training Create and post a web-based curriculum for PCP office staff about how to accommodate and integrate children and youth with ASDs in their medical offices. In Progress Improve Capacity of Doctors Focus Groups 7 Specialists 2 Adult Doctor 2 Surveys 37 Families (Mini online survey) 78 Families (In Progress) 21 Adults (In Progress Sound Research • 83 Questions – 3 Hour Interviews • Controlled Tool Development and Interview Protocol • Family Agency Did Interviews • DIFFERENT Evaluator – 3 Level Qualitative Analysis, Complete Quantitative Analysis • Stay Tuned Physician Input Regarding Transitioning to Adult Health Care Barriers Identified • Physician knowledge of ASD • Cost of providing services • Need to fight for services • Fragmented care • Aging out of systems • The tendency for over medicating. (Psychiatrist) “What we see is that they age out, and then where do they go? That is when I get them. And they are on a ridiculous list of meds that we spend two years trying to trim down!” • Most referrals to adult medical specialists come from the parents. Three Pilots Conducted Two Quality Improvement Projects (in multiple locations) linking developmental pediatricians and CDS sites. Evaluated processes for referral and evaluation and field tested algorithm to streamline evaluation and access to early intervention services. Implement the National Medical Home Autism Initiative recommendations to provide enhanced care coordination services in the medical home for children and youth with ASDs. HRSA funded project on Family-Centered Transition Planning Project. Two State projects were done in collaboration with the Maine Center for Community Inclusion and Disability Studies and the University of New Hampshire’s Institute on Disability