Combating Autism Act Initiative Evaluation: Preliminary Findings Presentation. January 14, 2011

Transcription

1 Combating Autism Act Initiative Evaluation: Preliminary Findings Presentation for the 2011 CAAI Grantee meeting January 14,

2 PRESENTATION OVERVIEW I. Introduction Claire Wilson, Insight II. MCH Autism Intervention Research Program Anne Peterson, Insight III. Leadership Education in Developmental Behavioral Pediatrics (DBP) Brittany McGill, Insight IV. Leadership Education in Neurodevelopmental Disabilities (LEND) Claire Wilson, Insight V. State Implementation Grants Carol Irvin, Mathematica VI. Conclusion: Building a Foundation for Systems Change Claire Wilson, Insight 2

3 GOAL OF THE COMBATING AUTISM ACT INITIATIVE (CAAI) Enable all infants, children and adolescents who have, or are at risk for developing, Autism Spectrum Disorders (ASD) and other developmental disabilities to reach their full potential by: Developing a system of services that includes screening children early for possible ASD and other developmental disorders; Conducting early, interdisciplinary, evaluations to confirm or rule out ASD and other developmental disorders; and, Providing evidence based, early interventions when a diagnosis is confirmed. 3

4 GOALS OF THE CAAI EVALUATION Assess the grantees progress in accomplishing the intended goals and objectives of MCHB s CAAI; Identify problems or barriers that surfaced during implementation and how these problems or barriers were resolved; Identify any existing gaps in the grantees activities; and Measure the CAAI outputs and outcomes for the Report to Congress. 4

5 CAAI EVALUATION OVERVIEW Three Program Areas Autism Intervention Research Training DBP LEND State Implementation Evaluating three program areas that received CAAI supplemental or expansion grants in FY2008 and FY2009 Grants awarded in FY2008 are for 3 years Most grants awarded in FY2009 are for 2 years Grants awarded after 2009 are NOT included in the Evaluation 5

6 DISTRIBUTION OFFY08 AND FY09 CAAI FUNDING* CAAI Funding by Program States 14% Research Programs 43% LEND 41% DBP 2% * Chart does not include funds awarded to the two Coordinating Resource Centers (AUCD and AMCHP) nor does it include grants awarded after FY09. 6

7 CAAI EVALUATION OVERVIEW: DATA COLLECTION Research Networks Grant Applications Continuation Applications Semi Structured Interviews Data Collection Forms Training Programs Grant Applications Continuation Applications Semi Structured Interviews NIRS State Implementation Grant Applications Continuation Applications Semi Structured Interviews DGIS The evaluation team will also interview each of the Resource Centers (AUCD and AMCHP) in

8 CAAI EVALUATION OVERVIEW: CURRENT STATUS Completed Evaluation Activities Remaining Evaluation Activities Reviewed Grant applications Reviewed 2009 and 2010 continuation applications Completed first set of semistructured interviews Collected two rounds of NIRS data from training grantees Obtained data collection forms from Research grantees Semi structured interviews with all grantees One additional NIRS collection Provide program level final reports Provide preliminary and final report to Congress Final presentation 8

9 MCH AUTISM INTERVENTION RESEARCH PROGRAM Anne Peterson David Newman Insight Policy Research 9

10 MCH AUTISM INTERVENTION RESEARCH PROGRAM MCH Autism Intervention Research Networks R40 Autism Intervention Research Grants AIR P 15 CRE sites focusing on physical and medical health interventions 5 two year grants supporting research on evidence based interventions 2 one year Secondary Data Analysis Grants (SDAS) AIR B 5 CRE sites focusing on behavioral, mental, social, and/or cognitive health interventions 27 research institutions linked across the U.S. 10

11 NATIONAL PRESENCE OF THE AUTISMINTERVENTION RESEARCH PROGRAM No Programs 1 Program 2-3 Programs 4+ Programs 11

12 RESEARCH PROGRAM OBJECTIVES Support intervention research Develop guidelines for interventions EARLY SCREENING, EVALUATION & INTERVENTION Validate tools for intervention Disseminate information to health professionals and the public 12

13 AIR BEHAVIORAL RESEARCH NETWORK Supporting intervention studies that: KENNEDY KRIEGER FSU Target underserved or underrepresented populations Focus on interventions that address the 5 core deficits in children with ASD Are conducted in natural environments UM UCLA UW Involve collaboration with parents 13

14 AIR PHYSICAL RESEARCH NETWORK Utilizes the structure of the Autism Treatment Network (ATN) to carry out projects U of MO COLUMBIA COLUMBIA PITTS BURGH CINCINNATI CHIDRENS HOSPITAL UAMS BAYLOR URMC Link to active nationwide outreach and dissemination efforts TORONTO VANDER BILT MASS GENERAL KENNEDY KRIEGER U of CO OHSU LADDERS Use of dynamic ATN registry 14 KP

15 AIR PROGRAM STUDIES: AREAS OF RESEARCH KEY TOPIC AREAS: Gastrointestinal issues Diet and nutrition Sleep disturbances Medication choice and monitoring Social skills/connections including joint engagement Peer relationships and friendships Family well being Transitioning to adult life 15

16 AIR PROGRAM STUDIES: TARGET POPULATIONS LOW INCOME UNDERSERVED NON ENGLISH SPEAKING RURAL 16

17 AIR PROGRAM STUDIES: BRINGING MCH PRIORITIES TO ASD RESEARCH 7 of 10 AIR studies in 2009 emphasize inclusion of culturally distinct and underrepresented population groups 7 of 10 AIR studies in 2009 include interventions tailored to cultural and linguistic needs of special populations All AIR studies involve parents Parent advocate on RN Steering Committee Parent review of protocols and intervention manuals 17

18 AIR PROGRAM STUDIES: PROGRESS TO DATE (THROUGH SEPTEMBER 2010) STUDIES IN PROGRESS: 17 studies in progress 6 using leveraged funding sources MANUSCRIPTS: 1in preparation 3 submitted/pending 7 accepted/in press LEVERAGED FUNDING: $3,800,000 in outside funding obtained 18

19 AIR PROGRAM ACCOMPLISHMENTS: GUIDELINE DEVELOPMENT AIR Physical: Drafted and piloted clinical guidelines and algorithms for evaluating symptoms and providing treatment. Gastrointestinal guideline Chronic diarrhea Constipation Food allergy Sleep guideline: Insomnia/night wakings Neurology Genetics Metabolic Screenings guideline EEG MRI Medication choice Medication monitoring: Side effects of anti psychotic medication 19

20 AIR PROGRAM ACCOMPLISHMENTS: GUIDELINE DEVELOPMENT AIR Behavioral: Conducting a comprehensive review of ASD behavioral treatment interventions. Literature review and synthesis is complete Report sent to technical expert panel Plans to publish guidelines in a peer reviewed journal Areas addressed include comprehensive behavioral programs, recommendations for communication and social skills interventions, and the top 5 priorities for future research 20

21 AIR PROGRAM ACCOMPLISHMENTS: SEVEN TOOLSDEVELOPED AND PILOTED AIR Physical Behavioral Treatments Toolkit GI Symptom Inventory Sleep Hygiene Toolkit AIR Behavioral Pragmatic Rating Scale Playground Observation of Peer Engagement (POPE; a simplified version of the ADI R) Wetherby& Lord measure of engagement (for home activities) Adaptation of the Cairns & Cairns social network measure (for school staff) 21

22 DISSEMINATION ACTIVITIES Public Web sites AIR B online knowledge base (Phenowiki; includes results from more than 75 published studies that link ASD research studies) Academic conferences Ongoing events with CREs, LEND/DBP programs and community based organizations 22

23 DISSEMINATION ACTIVITIES To Clinicians 57 academic conference presentations 1,000 health professionals trained in 55 training sessions at CRE sites To Parents and the Community 3 newsletters including Autism Speaks AIR Perspectives, the electronic newsletter E Speaks, and the new electronic ATN newsletter Community educational lecture series seminars 15 grand round research presentations Collaborations with LEND/DBP programs that train clinicians Presentations at conferences for families Parent to Parent training 23

24 MCH AIR PROGRAM: EXPANDING ASD RESEARCH DISSEMINATING EVIDENCE IMPROVING CLINICAL PRACTICE Focus on underserved populations Connecting interdisciplinary groups of researchers and clinicians Leveraging grant funds with other funding sources to build sustainability Providing funds to early career researchers to promote future ASD related research 24

25 LOOKING FORWARD: FUTURE PLANS AND PRODUCTS OF THE RESEARCH PROGRAMS MCH Autism Intervention Research Networks R40 Autism Intervention Research Program 21 Final study reports 5 Screening tools 3 Measures of engagement 5 Treatment manuals 7 Practice guidelines / toolkits (with algorithms) 10 Academic study publications 7 Academic study publications 25

26 AIR PROGRAM STUDIES: CHALLENGES Delays in obtaining IRB approval. Encouraging proposals from and training non researcher clinicians. Engaging and retaining non English speaking, low income or low literacy participants. Need to validate an intervention manual/tool twice. Finding family advocates for underserved children. 26

27 MCH LEADERSHIP EDUCATION IN DEVELOPMENTAL BEHAVIORAL PEDIATRICS (DBP) TRAINING PROGRAMS Bryan Johnson Brittany McGill Insight Policy Research 27

28 PURPOSE OF DBP PROGRAM Prepare fellows for leadership roles to advance the field of DBP Provide trainees with biopsychosocial knowledge and clinical expertise Enhance behavioral, psychosocial, and developmental aspects of pediatric care 28

29 DBP EXPANSION GRANTS UNDER CAAI 29

30 DBP OBJECTIVES UNDER CAAI Train clinicians to use screening and diagnostic tools Train clinicians to provide advocacy, counseling and coordination of care PROMOTE EARLY SCREENING, EVALUATION & INTERVENTION Translate research into practice Reduce barriers to screening & diagnosis Increase awareness 30

31 WHO ARE THE DBPS? Long Term (Fellows) 3 year fellowship program for DBP specialists 300+ training hours Medium Term Typically pediatric residents in a mandatory DBP rotation, ~160 training hours training hours Short Term Typically medical students, such as those spending 8 weeks of their 3rd year on a pediatric clerkship <40 training hours 31

32 TRAINING: TOTAL LONGTERMTRAINEES BYFISCALYEAR Number of Trainees (6 DBP programs) 2010 (6 DBP programs) No change in long term trainees between 2009 and 2010 due to limited funding increase 32

33 TRAINING: TOTAL MEDIUMTERMTRAINEES BYFISCALYEAR Number of Trainees (6 DBP programs) 2010 (6 DBP programs) Medium term trainees increased 8% between 2009 and

34 TRAINING: TOTAL SHORTTERMTRAINEES BY FISCAL YEAR Number of Trainees (6 DBP programs) 2010 (6 DBP programs) Short term trainees more than doubled between 2009 and

35 TRAINING: PERCENT CHANGE IN MEDIUM AND SHORT TERM TRAINEES BETWEEN FY08 AND FY Both years include 6 grantees 120 Percent Increase Medium Term Type of Trainee Short Term 35

36 TRAINING: SCREENING AND DIAGNOSIS DIDACTIC CLINICAL Focus on valid and reliable screening and diagnostic tools and evidence based interventions Takes place onsite in hospital clinics and offsite at schools, Head Start, early intervention programs, etc. Additional ASD content in new and existing courses Some programs offering certification in ASD screening and diagnostic tools provides continuity and sustainability Intensified focus on ASD Additional ASD specific community sites Incorporated family based experiences (for example, A Day in the Life program) 36

37 TRAINING: PROMOTING ADVOCACY, COUNSELING, COORDINATION OF CARE Macro Level Didactics Attend meetings of national associations Individual projects Micro Level Clinical work Bridging families and services in community Interacting with social service agencies 37

38 ACHIEVING THE CAAI OBJECTIVES THROUGH CONTINUING EDUCATION EXAMPLES OF CONTINUING EDUCATION ACTIVITIES Grand rounds Collaborative office rounds with community based providers Seminars for hospital departments, local/state AAP members, others MCHAT training for practicing pediatricians Behavioral management seminars for school personnel Conference presentations Training OBJECTIVES ADDRESSED Increasing awareness Translating research into practice Reducing barriers 38

39 DBP CONTINUING EDUCATION DBP Grantees hosted 60 Continuing Education events in FY09* These events included over 3,000 total participants 39 *Data on FY08 CE events not collected from DBP grantees

40 DBP COLLABORATIONS: PROVIDING TRAINING, TECHNICAL ASSISTANCE, CONSULTING Collaborate with LEND programs to maximize training resources Case consultation and training for Title V home visiting program Providing consultations at schools and Head Start programs Improving Community Services and Systems of Care Consulting for state Medicaid program regarding mandated universal behavioral health screening Building ASD screening and diagnosis capacity at other local hospitals 40

41 DBP MAJOR AREAS OF IMPACT Increasing the number of professionals who can screen for and diagnose/rule out ASD Reaching many more MT and ST trainees Developing future DBP leaders with rich experience and scientific expertise in ASD Reaching beyond DBP professionals and connecting to community Building on existing network with other providers, Title V/MCH agencies, and the community to extend the reach of the CAAI 41

42 LEADERSHIP EDUCATION IN NEURODEVELOPMENTAL AND RELATED DISABILITIES Claire Wilson Alex Suchman Insight Policy Research 42

43 LEND PROGRAM: PURPOSE AND OBJECTIVES Advance knowledge and skills of MCH professionals to improve health care delivery systems for children with NDDs Interdisciplinary education emphasizing integration of services IMPROVED HEALTH FOR CHILDREN WITH NDDs Enhance cultural competency, partnerships, familycentered care Foster communitybased partnerships 43

44 EXAMPLES OF DISCIPLINES REACHED Pediatric Dentistry Genetic Counselors Medicine Social Work (e.g., DBP, NDD, Child Psychiatry) Psychology Health Administration Nutrition LEND Nursing Special Education Health Administration Special Education Audiology Physical, behavioral, occupational therapy Speech Pathology Parents 44

45 LENDS AWARDED CAAI GRANTS: FY

46 LENDS AWARDED CAAI GRANTS: FY

47 LEND ACTIVITIES, ACCOMPLISHMENTS AND LONG TERM GOALS PRIMARY LEND ACTIVITIES TRAINING INCREASING AWARENESS BUILDING PARTNERSHIPS OUTPUTS More professionals in the pipeline ASD focused didactic and clinical training Enhanced skills among practicing professionals Of early signs and symptoms Of available resources Providing TA, participation in Act Early Summits, working with States REDUCING BARRIERS LONG TERM GOAL PROMOTING EARLY SCREENING, EVALUATION, AND INTERVENTION 47

48 TRAINING: MORE PROFESSIONALS IN THE PIPELINE 2500 Change in number of trainees between 2009 and 2010 Number of Trainees (n=22 grantees) 2010 (n=39 grantees) 0 Fiscal Year 48

49 TRAINING: HIGHER ENROLLMENT IN ASD FOCUSED COURSES Enrollment in Didactic Training: Medium Term Trainees Enrollment in Didactic Training: Long Term Trainees Number MT trainees (22 grantees) 2010 (39 grantees) Number LT Trainees (22 grantees) 2010 (39 grantees) 49

50 TRAINING: INCREASED ASD CLINICAL TRAINING OPPORTUNITIES Medium Term Trainees that received ASD focused clinical training Long Term Trainees that received ASD focused clinical training Number MT Trainees Number LT Trainees (22 grantees) 2010 (39 grantees) (22 grantees) 2010 (39 grantees) 50

51 TRAINING AND INCREASING AWARENESS: ENHANCED KNOWLEDGE AND SKILLSAMONG PRACTICING PROFESSIONALS THROUGH CONTINUINGEDUCATION Number of CE Events (22 grantees) 2010 (39 grantees) 51

52 TRAINING AND INCREASING AWARENESS: ENHANCED KNOWLEDGE ANDSKILLSAMONG PRACTICING PROFESSIONALS Number of other training events (22 grantees) 2010 (39 grantees) 52

53 INCREASING AWARENESS 53

54 INCREASING AWARENESS: PEER REVIEWED PUBLICATIONS BY FISCAL YEAR Number of Publications (22 grantees) 2010 (39 grantees) 54

55 BUILDING PARTNERSHIPS: PROVIDING TECHNICAL ASSISTANCE TO IMPROVE ACCESS Number of TA Events (22 grantees) 2010 (39 grantees) 55

56 EXAMPLES OF PROGRESS University of Kansas LEND Objective: Increase state, regional, and national capacity to screen, diagnose and rule out an Autism Spectrum Disorder before age 2. STATUS AS OF 2010: Mean age is 5.5 years (3 for children under 5 and 7 for children over 5). Regional teams are starting to evaluate children. Indiana University LEND Objective: Decrease the wait time for appointments to within 7 weeks following third party payer approval. STATUS AS OF 2010: The average wait time for appointments is around 5 to 6 weeks. 56

57 EARLY EVIDENCE OF DIRECT IMPACT: INCREASED NUMBER OF CHILDREN SCREENED AND EVALUATED BETWEEN 2009 AND 2010 Number of Children Screenings Diagnostic Evaluations 2009 (22 grantees) 2010 (39 grantees) 57

58 STATE IMPLEMENTATION GRANTS Carol Irvin Michaella Morzuch Mindy Lipson Mathematica Policy Research 58

59 PURPOSE OF THE STATE IMPLEMENTATION GRANTS Help States implement state plans Create model programs Improve access 59

60 A GROWING NETWORK OF STATE GRANTEES Grantees: Alaska Rhode Island Illinois New Mexico Missouri New York Utah Washington Wisconsin Grantees: Alaska Utah Illinois Washington Missouri Wisconsin 60

61 ELIGIBLE ENTITIES: PUBLIC OR NONPROFIT AGENCIES Title V Grantees Alaska New York Rhode Island Utah Washington Wisconsin Non Title V Grantees Illinois The Hope Institute for Children and Families Missouri Thompson Center for Autism & Neurodevelopmental Disorders at the University of Missouri New Mexico Center for Development and Disability at the University of New Mexico Health Sciences Center, School of Medicine 61

62 ADDRESSING THE CAAI OBJECTIVES: OVERVIEW OF STATE ACTIVITIES Awareness Building Reducing Barriers Training Infrastructure Building General Information Campaigns Primary Care Providers Reimbursement and Insurance Providers in collaboration with LEND Partnership Building Early Intervention Providers Capacity building Initiatives: Primary Care System Regional systems of referrals and resources Child Care Providers Families : Dentists Initiatives to help families access services navigation and advocacy skills Surveillance Systems 62

63 GENERAL AWARENESS BUILDING General Information Campaigns Spearheading Autism Awareness Month Activities Distributing CDC s Learn the Signs. Act Early Materials Grantee Highlights 6 new brochures developed 5,500 copies of CDC s Learn the Signs. Act Early materials distributed in Alaska 3,207 page views of ASD related pages on Utah s Medical Home Portal 63

64 FAMILY AWARENESS BUILDING Development of Resource Information Grantees develop and distribute resource guides Families use guides to navigate the service system Grantee Highlights 4,700 families in New Mexico have received a state navigation guide that is being translated into Spanish 11,000 copies of Washington s Autism Guidebook have gone to providers and families; the online version has received 170,000 hits 31,113 visitors have viewed New York s Autism/PDD Clinical Practice Guideline materials 64

65 REDUCING BARRIERS THROUGH INSURANCE COVERAGE Private Coverage Mandates Missouri 2010 legislation and grantee is increasing the number of trained therapists Medicaid Coverage New Mexico Wisconsin Translating its 2009 legislation into regulations New York 65

66 REDUCING BARRIERS BY BUILDING CAPACITY Learning Collaboratives to Build Medical Homes Multiple providers together implement practice changes Collect and report data to monitor the results Utah Case Study Developmental Screens at 12 and 24 month well child visits (registry to track follow ups and referrals and parent meetings) 8 practices (13 physicians) in 2009 Screening increased from 22 percent to 92 percent in 6 months 16 children flagged for follow up 11 medical practices (16 physicians and 1 nurse practitioner) and 5 dental practices in 2010 Distance learning approach under development 66

67 FAMILY INVOLVEMENT Parents Members of statewide advisory councils Family Resource Specialists In New Mexico, multiple family members participate on its advisory board Alaska and its Family2Family Information Center is increasing the number of Parent Navigators Missouri s Family Resource Specialists have served 389 youth with the transition to adult services 67

68 PROVIDER TRAINING Primary care providers and other professionals including public health nurses, childcare providers, and early intervention staff Grantee Highlights Alaska 124 trained in person 175 presentations for community health providers, leaders, and family members 100 Part C providers trained in the SCERTS model Missouri 554 trained in person 800+ trained online 145 DVD training modules distributed to childcare providers 68

69 FAMILY TRAINING Helping families help themselves after a diagnosis Grantee Highlights Illinois In person care coordination training and how to work with primary care physicians Missouri Financial planning session at annual autism conference, 15 families attended last year s session Utah Autism ABCs: A Family Education Series, a weekly course available in English and Spanish Washington Training for Parent to Parent Coordinators 69

70 INFRASTRUCTURE BUILDING Building and enhancing partnerships to coordinate messages, collaborate on activities, and improve regional referral systems o o Range from 9 to 29 organizations with 3 to 11 core members On average, 2 new partnerships established during the grant among the first 6 grantees Grantee Highlights Illinois Developed an additional network of 10 agencies to focus on services for adults with DD Rhode Island In collaboration with the Autism Project of Rhode Island, providing technical assistance to 150 pediatric primary care providers on developmental screening Wisconsin Expanded its statewide commission to include two new urban based advocacy groups 70

71 SUMMARY Reaching People: More hearing messages about signs, early screening, and treatment Building Capacity: More providers and families receiving necessary resources On the Path to Early Screening and Diagnosis Enhancing Skills: More families and primary care, child care, and early intervention providers building needed skills Strengthening Partnerships: More coordination and collaboration among stakeholders 71

72 MCHB: PROVIDING A FOUNDATION FOR Accelerating systems change Breaking down barriers Collaborating to improve the health and well being of infants and children through research, clinical training and implementation of evidence based practices 72

73 TRAINING PROGRAMS: Increasing screening, assessment and intervention capacity Promoting team based approaches Empowering trainees to assume leadership positions in ASD focused programs RESEARCH PROGRAMS: Identifying effective interventions, developing clinical guidelines and disseminating evidence to providers and families Putting evidence based tools in the hands of providers STATE GRANTEES: Building state wide infrastructures to improve systems of services for individuals with ASD Enabling state systems to create and establish model programs 73

74 TRAINING PROGRAMS: Increasing the number of professional who can screen & diagnosis/rule out ASD Increasing awareness of available resources through TA RESEARCH: Supporting research and gathering evidence to close knowledge gaps Providing clinicians with evidence based guidelines for diagnosis & treatment Providing tools for measuring outcomes STATE GRANTEES: Helping states implement statewide plans to improve access to screening and diagnosis 74

75 TRAINING: Forming consortiums Hosting regional summits Exchanging resources Partnering with states RESEARCH PROGRAMS: Sharing expertise Disseminating evidence Collaborating on research studies STATE IMPLEMENTATION: Partnering with other CAAI programs to train and build awareness Sharing staff 75

76 FOR MORE INFORMATION Please contact: Claire Wilson Anne Peterson Bryan Johnson Brittany McGill Carol Irvin mpr.com Michaella Morzuch mpr.com 76