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RESULTS OF THE COMBATING AUTISM ACT INITIATIVE: HRSA’S EFFORTS TO IMPROVE ASD SERVICE DELIVERY THROUGH RESEARCH, TRAINING, AND STATE IMPLEMENTATION GRANTS
April 16, 2012
Presentation Overview
I. Introduction
Laura Kavanagh, MCHB
Deidre Washington-Jones, MCHB
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
Claire Wilson, Insight
VI. Conclusion
Claire Wilson, Insight
Welcome
Laura Kavanagh, MPP
Director, Division of MCH Workforce Development,
Maternal and Child Health Bureau
Background & Introduction
(
Deidre Washington-Jones, MPH CHES
US Public Health Service, Senior Public Health Analyst/Program Director, Division of Services for
Children with Special Health Needs, Maternal and Child Health Bureau
Speakers
Anne Peterson Brittany McGill Claire Wilson
Insight Policy Research
CAAI GOAL
Early screening
Early diagnostic evaluation
Early, evidence-based intervention
CAAI OBJECTIVES
• of ASD among providers, parents, and the public
Increase Awareness
• to screening and diagnosis Reduce Barriers
• on evidence-based interventions
Support Research
• To screen for, diagnose or rule out, and provide interventions for ASD
Train Professionals
6
Intro
du
ction
• Includes grantees funded in 2008 and 2009 SCOPE
• October 1, 2008 – September 30, 2011
TIMEFRAME
NOTE: The evaluation does not reflect products released after September 2011.
CAAI EVALUATION
7
Intro
du
ction
MCH AUTISM INTERVENTION RESEARCH PROGRAM
Anne Peterson Brittany McGill Alex Suchman
Insight Policy Research
8
Au
tism In
terve
ntio
n R
ese
arch P
rogram
MCH AUTISM INTERVENTION RESEARCH PROGRAM
AIR-P
1 main site and 15 CRE sites focusing on physical and medical health interventions
MCH Autism Intervention
Research Networks
AIR-B
1 main site and 5 CRE sites focusing on behavioral, mental, social, and/or cognitive health interventions
R40 Autism Intervention Research Grants
5 2-year grants supporting research on evidence-based interventions
2 1-year Secondary Data Analysis grants
(SDAS)
29 research institutions linked across the United States
9
Au
tism In
terve
ntio
n R
ese
arch P
rogram
NATIONAL PRESENCE OF THE AUTISM INTERVENTION RESEARCH PROGRAM
AL
AZ
CT
DC
DE
GA
HI
IA
ID
IN
KS KY
LA
ME
MN
MS
MT ND
NE
NJ NV
OK
SC
SD
VA
VT
WV
WY
AK
IL
NM
RI
UT
WI
AR
CA CO
FL
MA
MD
MI
MO
NC
NH
NY
OH
OR
PA
TN
TX
WA
10
Au
tism In
terve
ntio
n R
ese
arch P
rogram
ADDRESSING CAAI OBJECTIVES: OVERVIEW OF RESEARCH ACTIVITIES
Support Intervention
Research
Develop Tools
Develop Guidelines
Build Awareness
11
Au
tism In
terve
ntio
n R
ese
arch P
rogram
AIR-BEHAVIORAL RESEARCH NETWORK
Supporting intervention studies that:
Are focused on minority, low-income, underserved, or underrepresented populations
Address the 5 core deficits in children with ASDs
Are conducted in natural environments
Involve collaboration with parents
UCLA
UM
KENNEDY KRIEGER
FSU
UW
12
Au
tism In
terve
ntio
n R
ese
arch P
rogram
AIR-PHYSICAL RESEARCH NETWORK
Reduce the severity of ASD symptoms
Utilize the structure of the Autism Treatment Network (ATN) to carry out projects
Link to active nationwide outreach and dissemination efforts
Use of dynamic ATN registry
CINCINNATI CHIDRENS HOSPITAL
COLUMBIA
OHSU
U of CO
KENNEDY KRIEGER
U of MO COLUMBIA
PITTS- BURGH
VANDER-BILT
LADDERS
KP
MASS GENERAL
UW
Supporting intervention studies that:
URMC UAMS
BAYLOR
13
SUPPORTING RESEARCH: AIR PROGRAM STUDIES AND TOPIC AREAS
Key Topic Areas
AIR-P AIR-B R40
• Gastrointestinal issues
• Diet and nutrition
• Sleep disturbances
• Medication choice and monitoring
• Neurologic disorders
• Social skills/ connections including joint attention/ engagement
• Peer relationships and friendships
• Language acquisition
• Special-education services
• Transition to adulthood
• Early intervention
• Child and parental mental health
• Participant-directed services
14
Au
tism In
terve
ntio
n R
ese
arch P
rogram
MCH AUTISM INTERVENTION RESEARCH PROGRAM STUDY RESULTS Intervention Research
Tools
Guidelines
Awareness Building
Au
tism In
terve
ntio
n R
ese
arch P
rogram
SUPPORTING RESEARCH: TARGET POPULATIONS FOR AIR PROGRAM STUDIES
NON-ENGLISH- SPEAKING
(72% of studies target Hispanic
families)
UNDERSERVED (74% of studies target African-
American families)
40% of studies target RURAL
FAMILIES
75% of studies target
LOW-INCOME POPULATIONS
16
Au
tism In
terve
ntio
n R
ese
arch P
rogram
DEVELOPING GUIDELINES: AIR-P ACCOMPLISHMENTS
AIR-Physical: Two guideline manuscripts submitted to Pediatrics supplement, 6 additional guidelines are in draft form.
Gastrointestinal guideline: Constipation
Sleep guideline: Insomnia
Neurology-Genetics-Metabolics Screenings guideline
EEG
MRI
Genetics testing
Metabolics testing
Medication
Medication choice
Medication monitoring
17
Au
tism In
terve
ntio
n R
ese
arch P
rogram
DEVELOPING GUIDELINES: AIR-B ACCOMPLISHMENTS
AIR-Behavioral: Comprehensive review of all ASD nonmedical treatment interventions available. Review of literature and development of guidelines involved technical panel of ASD behavioral experts across the United States.
Guideline manuscript submitted to Pediatrics supplement
Includes recommendations for communication and social skills interventions and the top 5 priorities for future research
18
Au
tism In
terve
ntio
n R
ese
arch P
rogram
DEVELOPING OR VALIDATING TOOLS: AIR-P AND AIR-B ACCOMPLISHMENTS
AIR-Physical
• Applied Behavioral Analysis Toolkit • Behavioral Treatments Toolkit • Autism Navigator • Complementary and Alternative Medicine Toolkit • Dental Practitioners Toolkit • Feeding and Diet Toolkit • GI Symptom Inventory Tool • Sleep Hygiene Toolkit • Medication Decision Toolkit/Family Decision Aid (for families, includes FAQs and Decision Aid) • Blood Draw Toolkits (for parents and separately for providers) • Toileting Toolkit • Visual Supports Toolkit 19
Au
tism In
terve
ntio
n R
ese
arch P
rogram
DEVELOPING OR VALIDATING TOOLS: AIR-P AND AIR-B ACCOMPLISHMENTS
AIR-Behavioral
Pilot testing rapid experimental measures and adapting validated measures for PDAs or other devices including: • Pragmatic Rating Scale • Playground Observation of Peer Engagement (POPE; a simplified version of the
ADI-R) • Wetherby & Lord measure of active engagement (for home activities) • Adaptation of the Cairns & Cairns social-network measure (for school activities) • Frankel Measure of play-date experiences • TOPI (Teen Observation of Peer Interaction, adaptation of POPE for teenagers)
20
Au
tism In
terve
ntio
n R
ese
arch P
rogram
AWARENESS BUILDING
Public Web sites
www.asdweb.org
www.autismspeaks.org/community/outreach/airp.php
AIR-B online knowledge base (Phenowiki)
Includes results from more than 75 published studies
Academic conferences
AIR-P Perspectives newsletter
AIR-P community Educational Series Lecture
Series Events
Ongoing events with CREs, LEND/DBP
programs, and community-based organizations 21
AWARENESS BUILDING
Among Clinicians Among Parents and the Community
95 academic conference presentations
Newsletters including: • AIR-Perspectives • E-Speaks
4,000+ health professionals trained at CRE sites, grand rounds, Webinars, and scientific conference presentations
6,000+ individuals reached through community educational lecture series seminars and conferences
Collaborations with LEND/DBP programs that train clinicians
Parent-to-Parent training; feedback from parents on parent-mediated interventions
22
Au
tism In
terve
ntio
n R
ese
arch P
rogram
UNIQUE ASPECTS OF MCH AUTISM INTERVENTION RESEARCH PROGRAM
Providing funds to early-career researchers to promote future
ASD-related research
Focusing on underserved populations
Connecting interdisciplinary groups of researchers and
clinicians
Leveraging grant funds with other funding sources to build
sustainability
Enabling Children and Young Adults With ASD to
Reach Their Full Potential
23
Au
tism In
terve
ntio
n R
ese
arch P
rogram
MCH AUTISM INTERVENTION RESEARCH PROGRAM FINAL PRODUCTS
MCH Autism Intervention Research products include:
• 26 Studies
• 13 Published Manuscripts
• 6 Treatment Manuals
• 9 Practice Guidelines
• 14 Toolkits
• 7 Measures of Engagement 24
Au
tism In
terve
ntio
n R
ese
arch P
rogram
SELECTED RESEARCH FINDINGS
AIR-B: Web-based delivery of social-skills instruction was found to be useful for children with ASD living in rural and underserved areas.
AIR-B: Study found that a child’s peers can be used to improve social skills in children with ASD.
AIR-P: Reducing gastrointestinal complaints and improving sleep was found to reduce the severity of other ASD symptoms.
“We know… from before we started the intervention that our kids in schools are very lonely and isolated. We also know from the AIR-B peer-interaction studies that we can change this situation with direct teaching of social skills and that utilizing typical peers makes a difference.”
– AIR-B grantee 25
Au
tism In
terve
ntio
n R
ese
arch P
rogram
SELECTED RESULTS FROM R40 GRANTS
Online video technology was successful in delivering effective treatment to families in areas with limited access to health professionals.
An experimental intervention for mothers of young children with ASD was found to be effective in decreasing maternal stress and depression.
A parent-mediated intervention effectively strengthened family relationships and increased parents’ confidence in their parenting skills.
“When you are working with families … of a newly diagnosed child, the wounds are so fresh… In the beginning (of the intervention) they feel hopeless, and helpless, their self-efficacy is terrible, and they are quite angry and some of them are quite depressed… What is fascinating is to watch these parents transform over the weeks (of the intervention) and see how they fall in love with their child and to see how confident they become about themselves as parents. It’s a beautiful thing and it happens for every single family.”
– R40 grantee
26
Au
tism In
terve
ntio
n R
ese
arch P
rogram
FROM MATT: (participant in
AIR-B social skills study)
27
Au
tism In
terve
ntio
n R
ese
arch P
rogram
LEADERSHIP EDUCATION IN DEVELOPMENTAL BEHAVIORAL PEDIATRICS (DBP) TRAINING PROGRAMS
Bryan Johnson Brittany McGill
Insight Policy Research
28
Trainin
g – DB
P
PURPOSE OF DBP PROGRAM
Enhance behavioral,
psychosocial, and developmental
aspects of pediatric care
Prepare fellows for leadership roles to
advance the field of DBP
Provide trainees with biopsychosocial knowledge and
clinical expertise
29
Trainin
g – DB
P
DBP EXPANSION GRANTS UNDER CAAI
30
Trainin
g – DB
P
DBP OBJECTIVES UNDER CAAI
Train Clinicians
Increase Awareness
Reduce Barriers to Screening &
Diagnosis
Translate Research Into
Practice 31
Trainin
g – DB
P
WHO ARE THE DBP TRAINEES?
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
• 40-300 training hours
Short-Term
• Typically medical students, such as those spending 8 weeks of their 3rd year on a pediatric clerkship
• <40 training hours 32
Trainin
g – DB
P
DBP STUDY RESULTS Training
Awareness Building
Research
Reducing Barriers
Trainin
g – DB
P
TRAINING AND WORKFORCE DEVELOPMENT: NUMBER OF LONG-TERM AND MEDIUM-TERM TRAINEES
Number of LT Fellows
by Grant Year
Number of MT Trainees
by Grant Year
24 24
30
0
5
10
15
20
25
30
35
Nu
mb
er
of
LT
Fello
ws
2008-09 2009-10 2010-11
229 247
232
0
50
100
150
200
250
300
Nu
mb
er
of
MT
Trai
ne
es
2008-09 2009-10 2010-11 34
Trainin
g – DB
P
IMPACT OF ADDITIONAL LONG-TERM FELLOWS
Single fellow is a substantial contribution in the context of fairly small programs
Increased the number of fellows in a given program by as much as 33%
In some cases, additional fellow increased capacity to reach underserved populations
Example: One grantee hired a Chinese-American fellow fluent in Cantonese and Mandarin, increasing the grantee’s ability to care for a population underserved in the community 35
Trainin
g – DB
P
IMPACT OF ADDITIONAL MEDIUM-TERM TRAINEES
CAAI-supported medium-term trainees increased capacity, despite the overall number of medium-term trainees remaining fairly constant
Enhanced clinical capacity with nurse practitioner initiative, training nurse practitioners in ASD, and adding to clinical staff
Enhanced community capacity with community health practitioner ASD “mini-fellowship”
Increased capacity to reach underserved populations
Builds bridges into underserved communities
36
Trainin
g – DB
P
TRAINING: ENHANCING ASD FOCUS IN THE
DBP CURRICULUM
Incorporated additional ASD content into new and existing courses
Increased faculty time for teaching
Supported development of Autism Case Training curriculum, in collaboration with CDC
Enhanced clinical opportunities, such as school for children with ASD
Offered certification-level training in screening and diagnostic tools, which provides continuity and sustainability
Incorporated family-based experiences, such as “A Day in the Life” program
DIDACTIC CLINICAL
“[The CAAI supplemental grant] really has put autism at the forefront of our training efforts.”
– DBP program director
37
Trainin
g – DB
P
IMPACT ON MCH WORKFORCE: INCREASING AWARENESS
Primary care physicians
Allied health professionals
Child care workers
Educators
Legal professionals
Grand rounds
M-CHAT training for pediatricians
Seminars for hospital departments, local/State AAP members, others
Behavioral-management seminars for school personnel
Conference presentations
Audiences Events
“When we’ve reached this many pediatricians, childcare workers, and people in the legal profession, who we wouldn’t have reached [without the CAAI funds], it’s hard to imagine that it’s not a huge effect… The impact has been tremendous.”
– DBP program director
38
Trainin
g – DB
P
IMPACT ON MCH WORKFORCE: PROFESSIONALS REACHED THROUGH ASD-RELATED TRAINING EVENTS
3,160
5,512
0
1,000
2,000
3,000
4,000
5,000
6,000
Nu
mb
er
of
Pro
fess
ion
als
2009-10 2010-11
Data source: NIRS CAAI module
39
Trainin
g – DB
P
Continuing Education Training Events
Outreach Training Events
2,398
2,716
2,200
2,300
2,400
2,500
2,600
2,700
2,800
Nu
mb
er
of
Pro
fess
ion
als
2009-10 2010-11
OTHER ASD AWARENESS-BUILDING ACTIVITIES
Online ASD screening toolkit for primary care providers
Informational newsletters
Dissemination of educational resource materials
Participation in public-awareness campaigns, mayoral task forces
40
Trainin
g – DB
P
SUPPORTING ASD RESEARCH AND TRANSLATING RESEARCH INTO PRACTICE
CAAI supplements provided salary support for additional faculty and fellow time in research activities:
Fellow research projects
Trainee involvement in faculty-led research
Translational research on ASD screening, diagnosis, and treatment
Dissemination of evidence-based research via publications and presentations
“The important part about the [CAAI funds] is that when opportunities come along to highlight ASD or to work with other people around issues around ASD, that we have the time to do it as opposed to not having the time to do it.”
– DBP program director
41
Trainin
g – DB
P
RESEARCH: SELECTED ASD STUDIES SUPPORTED THROUGH CAAI
Feasibility and efficacy of routine developmental screening in urban primary care settings
Relationship between parental stress and positive social skills of children with ASD (Fellow project)
Racial differences in the presentation of ASD (Fellow project)
Evaluation of an enhanced screening environment
Evaluation of “Fast Track” diagnostic clinics for high-priority children
Reliability of screening measures 42
Trainin
g – DB
P
RESEARCH: NUMBER OF PEER-REVIEWED PUBLICATIONS
29
36
48
0
10
20
30
40
50
60
Pe
er-
Rev
iew
ed
Pu
blic
atio
ns
2008-09 2009-10 2010-11
Data source: NIRS CAAI module
43
Trainin
g – DB
P
REDUCING BARRIERS TO ASD SERVICES THROUGH TRAINING, TECHNICAL ASSISTANCE, CONSULTING
Consulting for State Medicaid program
Providing consultations at schools and
Head Start programs
Building ASD screening and
diagnosis capacity at
other hospitals
Providing ASD training to
professionals statewide to increase
screening
Developing online resource
guides and databases of
ASD providers
Collaborating with LEND programs
Improving Community Services and Systems of
Care for ASD
44
DBP AREAS OF IMPACT
Enhancing the pipeline of professionals who can screen for and diagnose ASD Will ultimately reduce the lag between screening and diagnosis
and facilitate earlier entry into intervention
Developing future DBP leaders with rich experience and scientific expertise in ASD Improve larger systems of care Develop the evidence base for ASD screening, diagnosis, and
treatment
Reaching beyond DBP professionals and connecting to broader community to extend the reach of the CAAI To reduce barriers to ASD services, increase awareness of ASD,
translate research into practice by delivering cutting-edge research to providers on the front lines
45
Trainin
g – DB
P
LEADERSHIP EDUCATION IN NEURODEVELOPMENTAL AND RELATED DISABILITIES (LEND) TRAINING PROGRAMS
Claire Wilson Betsy Thorn
Insight Policy Research
46
Trainin
g – LEND
LEND PROGRAM: PURPOSE AND OBJECTIVES
Foster community-based partnerships
Enhance cultural competency,
partnerships, family-centered care
Interdisciplinary education emphasizing integration of services
Advance knowledge and skills of MCH professionals to
improve health care delivery systems for children with NDDs
IMPROVED HEALTH FOR
CHILDREN WITH NDDs
47
EXAMPLES OF DISCIPLINES REACHED
48
Medicine (e.g., DBP, NDD, Child Psychiatry)
Psychology
Nursing
Speech Pathology
Physical, Behavioral,
Occupational Therapy
Nutrition
Social Work
Pediatric Dentistry
Audiology
Health Administration
Genetic Counselors
LEND
Parents
Special Education
48
LENDS AWARDED CAAI GRANTS
2008: 22 grantees in 20 States awarded CAAI supplements
2009: An additional 17 grantees awarded CAAI supplements
49
ADDRESSING CAAI OBJECTIVES: OVERVIEW OF LEND ACTIVITIES
Training Building
Awareness
Contributing to Research
Reducing Barriers and Improving
Systems of Care 50 50
Trainin
g – LEND
THE INTERDISCIPLINARY TRAINING RESOURCE CENTER
MCHB awarded a 3-year grant to AUCD to support the training programs in meeting the CAAI objectives. AUCD:
Facilitated collaboration within and across the CAAI grant programs by hosting a SharePoint site, organizing and hosting Interdisciplinary meetings, and planning the Act Early Summits.
Provided technical assistance and resources (e.g., before, during, and following site visits)
Developed a mechanism for collecting performance measurement data during the 3-year grant period.
51
Trainin
g – LEND
LEND STUDY RESULTS Impacting Workforce Development Through Training
Awareness Building
Research
Reducing Barriers
Trainin
g – LEND
TRAINING/WORKFORCE DEVELOPMENT: INCREASING THE NUMBER OF PROFESSIONALS IN THE PIPELINE
1,148
2,249 2,589
0
500
1,000
1,500
2,000
2,500
3,000
Nu
mb
er
of
MT
Trai
ne
es
2008-09 (22 grantees)
2009-10 (39 grantees)
2010-11 (39 grantees)
486
1,367 1,405
0
500
1,000
1,500
Nu
mb
er
of
LT T
rain
ee
s
2008-09 (22 grantees)
2009-10 (39 grantees)
2010-11 (39 grantees)
Data source: NIRS CAAI module Data source: NIRS CAAI module
53
Trainin
g – LEND
Medium-Term Long-Term
TRAINING/WORKFORCE DEVELOPMENT: INCREASED ENROLLMENT IN ASD-FOCUSED COURSES
916
1,529 1,717
0
500
1,000
1,500
2,000
Nu
mb
er
of
MT
Trai
ne
es
2008-09 (22 grantees)
2009-10 (39 grantees)
2010-11 (39 grantees)
391
1,019 1,155
0
500
1,000
1,500
Nu
mb
er
of
LT T
rain
ee
s
2009 (22 grantees)
2010 (39 grantees)
2011 (39 grantees)
Data source: NIRS CAAI module Data source: NIRS CAAI module
54
Trainin
g – LEND
Enrollment in Didactic Training: Medium-Term Trainees
Enrollment in Didactic Training: Long-Term Trainees
TRAINING/WORKFORCE DEVELOPMENT: INCREASED ASD CLINICAL-TRAINING OPPORTUNITIES
357
1,353 1,374
0
500
1,000
1,500
Nu
mb
er
of
MT
Trai
ne
es
2008-09 (22 grantees)
2009-10 (39 grantees)
2010-11 (39 grantees)
274
989 1,125
0
500
1,000
1,500
Nu
mb
er
of
LT T
rain
ee
s
2008-09 (22 grantees)
2009-10 (39 grantees)
2010-11 (39 grantees)
Data source: NIRS CAAI module Data source: NIRS CAAI module
55
Trainin
g – LEND
Medium-Term Trainees That Received ASD-Focused Clinical Training
Long-Term Trainees That Received ASD-Focused Clinical Training
Vanderbilt LEND
Vanderbilt Medical Center
Vanderbilt Children’s Hospital
TRIAD
University of Arkansas
LEND
Louisiana UCEDD
Mississippi’s UCEDD
Example: Vanderbilt University Example: University of Arkansas LEND
56
Trainin
g – LEND
TRAINING/WORKFORCE DEVELOPMENT: CREATING NEW CLINICAL OPPORTUNITIES THROUGH PARTNERSHIPS
TRAINING/WORKFORCE DEVELOPMENT : ENHANCING KNOWLEDGE AND SKILLS AMONG PROFESSIONALS THROUGH CONTINUING EDUCATION
324
721
805
0
100
200
300
400
500
600
700
800
900
Nu
mb
er
of
CE
Eve
nts
2008-09 (22 grantees) 2009-10 (39 grantees) 2010-11 (39 grantees)
Data source: NIRS CAAI module
57
Trainin
g – LEND
TRAINING/WORKFORCE DEVELOPMENT : ENHANCING KNOWLEDGE AND SKILLS AMONG PROFESSIONALS THROUGH OUTREACH TRAINING
1,201
1,665
2,108
0
500
1,000
1,500
2,000
2,500
Nu
mb
er
of
Oth
er
Trai
nin
g Ev
en
ts
2008-09 (22 grantees) 2009-10 (39 grantees) 2010-11 (39 grantees)
Data source: NIRS CAAI module
58
Trainin
g – LEND
TRAINING/WORKFORCE DEVELOPMENT : ENHANCING SKILLS OF HEALTH CARE PROVIDERS AND EDUCATORS
• University of Kansas LEND used interactive television to train rural interdisciplinary education teams on screening and diagnosis.
• University of Iowa LEND created online training modules for professionals practicing in rural areas.
Distance-Education Initiatives
• University of Utah LEND assisted medical homes in in building regular ASD screening procedures into their practices. Baseline screening rates increased from about 10 % up to about 90 %.
• University of Vermont LEND worked with VCHIP to train practitioners in the use of the M-CHAT.
Learning Collaborative and
Quality Improvement Projects
• Children’s Hospital of Boston LEND collaborated with the State’s Title V program in developing an online training module for early-intervention providers to increase screening capacity.
• University of Oregon LEND trained school autism specialists in the use of the ADOS.
Training Educators and Early
Intervention professionals 59
Trainin
g – LEND
530
621
814
0
100
200
300
400
500
600
700
800
900
Nu
mb
er
of
Edu
cati
on
al P
rod
uct
s
2008-09 (22 grantees) 2009-10 (39 grantees) 2010-11 (39 grantees)
Data source: NIRS CAAI module
60
Trainin
g – LEND
INCREASING AWARENESS: EDUCATIONAL PRODUCTS DEVELOPED AND DISSEMINATED
INCREASING AWARENESS
61
Trainin
g – LEND
207
438 435
0
50
100
150
200
250
300
350
400
450
500
Pe
er-
Rev
iew
ed
Pu
blic
atio
ns
2008-09 (22 grantees) 2009-10 (39 grantees) 2010-11 (39 grantees)
Data source: NIRS CAAI module
62
Trainin
g – LEND
CONTRIBUTING TO RESEARCH: PEER-REVIEWED PUBLICATIONS
REDUCING BARRIERS AND IMPROVING SYSTEMS OF CARE
• UNC Chapel Hill LEND is building a more solid statewide
infrastructure for ASD services by training agency staff at the Child Development Service Agencies.
• University of Wisconsin LEND provided community pediatricians with consultation support through phone-based collaborative office rounds.
Partnering With Community-Service
Providers
• University of Washington LEND and University of Missouri LEND partnered with State grantees to promote coordination of care, access to services, and best practices for ASD service delivery.
• University of Miami LEND participated in the Governor’s Task Force on Autism, which developed an Early Identification and Treatment Flowchart as a starting point to improve service delivery.
Collaborations
• VCU LEND is working with military bases to help them build in-house capacity for addressing the needs of military families who have a child with ASD.
• CNMC LEND worked on making ASD screening part of the military health system.
Working With Military Systems
63
Trainin
g – LEND
REDUCING BARRIERS AND IMPROVING SYSTEMS OF CARE: PROVIDING TECHNICAL ASSISTANCE TO IMPROVE ACCESS
2,260
4,343
5,758
0
1,000
2,000
3,000
4,000
5,000
6,000
7,000
Nu
mb
er
of
TA E
ven
ts
2008-09 (22 grantees) 2009-10 (39 grantees) 2010-11 (39 grantees)
Data source: NIRS CAAI module
64
Trainin
g – LEND
EVIDENCE OF PROGRESS: INCREASED NUMBER OF DIAGNOSTIC EVALUATIONS
12,390
35,434
44,102
0
5,000
10,000
15,000
20,000
25,000
30,000
35,000
40,000
45,000
50,000
Nu
mb
er
of
Dia
gno
stic
Eva
luat
ion
s
2008-09 (22 grantees) 2009-10 (39 grantees) 2010-11 (39 grantees)
Data source: NIRS CAAI module
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EXAMPLES OF IMPACT
The LEND program director at the University of Rochester reported, “We have been inundated with referrals, and our screening rates have really increased in the past 2½ years… We are having kids referred to us at younger ages, and we are ruling ASD out in about one-third of the kids referred, which means that referral practices are changing.”
According to the LEND program director of the University of Illinois Chicago, “Due to combined efforts between the LEND, the Academy of Pediatrics, and others, we see children are coming in for screening at younger ages, which indicates more awareness on the part of families and providers in the community. The wait times to be seen have gone down in our clinics.”
The LEND program at Virginia Commonwealth University reported that the wait time for diagnostic evaluation services was reduced from 9 to 6 months.
In Kansas, where the LEND grantee has been training teams of community providers through distance learning, the wait time for diagnostic services has gone down to 3 months. Previously, wait times ranged from between 9 to 12 months.
The LEND program at Vanderbilt University reported that the waiting period for children to be seen at its clinic was reduced from 1 year to about 2 months.
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STATE IMPLEMENTATION GRANTS
Carol Irvin Meg Hargreaves Michaella Morzuch Vanessa Oddo
Mathematica Policy Research
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PURPOSE OF THE STATE IMPLEMENTATION GRANTS
Build State system
capacity
Create model
programs
Help grantees
implement State plans
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A GROWING NETWORK OF STATE GRANTEES
AL
AR AZ
CA CO
CT
DC
DE
FL
GA
HI
IA
ID
IN
KS KY
LA
MA
MD
ME
MI
MN
MS
MT
NC
ND
NE
NH
NJ NV
OH
OK
OR
PA
SC
SD
TN
TX
VA
VT
WV
WY
AK
IL
MO
NM
NY
RI
UT
WA
WI
:
2009 Grantees:
• Alaska • Illinois • Missouri • New Mexico • New York • Rhode Island • Utah • Washington • Wisconsin
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GRANTEES: PUBLIC AND NONPROFIT AGENCIES
• Alaska
• New York
• Rhode Island
• Utah
• Washington
• Wisconsin
• 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
Title V Grantees Non-Title V
Grantees
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AMCHP’S STATE PUBLIC HEALTH AUTISM RESOURCE CENTER
SPHARC conducted grantee needs assessment. Based on assessment, SPHARC hosted bimonthly technical assistance (TA) calls with grantees TA topics: program financing and health care reform;
strategies for engaging providers; care coordination; and youth transition
SPHARC organized peer-to-peer learning opportunities; site visits hosted by Alaska, Missouri, and Utah
SPHARC created a catalogue of information and resources through a Web-based SharePoint site SPHARC regularly updates the site with announcements for
State Title V programs; news and resources for public health professionals and families; State “best practices” in building ASD systems of care; and resources from TA calls
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ADDRESSING CAAI OBJECTIVES: OVERVIEW OF STATE ACTIVITIES
Building Awareness
Training and Workforce
Development
Infrastructure Building
Reducing Barriers and Improving
Systems of Care 72 72
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STATE IMPLEMENTATION RESULTS Building Awareness
Training
Infrastructure Building
Reducing Barriers
State Im
ple
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BUILDING PUBLIC AWARENESS
General Information Campaigns
Grantee Highlights Midwest premier of Temple Grandin; Autism Awareness video aired in
37 AMC theaters, with over 4,000 Web-page views (Illinois)
Statewide information campaign in 173 libraries – 68,300 materials distributed (New York)
TV and radio public service announcements targeting rural and tribal communities (Alaska)
Spearheading Autism Awareness Month Activities
Distributing CDC’s “Learn the Signs. Act Early.” Materials
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BUILDING FAMILY AWARENESS
Development of Resource Information
Grantees develop and distribute
resource guides
Families use guides to navigate the service system
Grantee Highlights
• Resource Directory to Illinois Agencies and Their Services
• Navigating Autism Services: A Community Guide for Missouri provided to families new to Missouri Autism Centers (Missouri)
• Three autism guides customized and distributed to different audiences – parents, foster care, children’s hospitals, EI programs (Washington)
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BUILDING CAPACITY THROUGH PROVIDER TRAINING
Primary care providers and other professionals including public health nurses, childcare providers, and early intervention staff
Grantee Highlights Alaska • 12 ASD training modules for distance education; posted online, packaged as
DVDs, included in BSW and nurse practitioner curricula • 338 clinicians, 224 non-clinicians, and 325 parents trained Missouri • Case study training for medical residents, online training for college students and
community professionals, and for improving parent-provider relationships • 2,030 clinicians and 12,475 non-clinicians trained
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BUILDING CAPACITY THROUGH FAMILY TRAINING
Helping families help themselves after a diagnosis
Grantee Highlights
Alaska • Family workshop during Autism Awareness Month, 116 parents receive
consultative services. Autism Society hosted sensory workshops for parents in 4 communities.
Illinois • Families trained as family advisors to contact their providers about the care
they received and distribute family care kits. 76 families trained.
New Mexico • Cohort of 30 parents funded to participate in the Partners in Policymaking
training to become policy advocates.
Utah • “Autism ABCs: A Family Education Series,” a weekly course in English and
Spanish, adapted for frontier, rural, and Spanish-speaking locations.
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State
Number of Practices/ Centers Trained
Number of Clinicians Trained
Number of Non-Clinicians Trained
Number of Families/ Parents Trained
Alaska NA 338 224 325
Illinois 113 841 NR 76
Missouri NR 2,030 12,475 NR
New Mexico NA 253 NA 30
New York NA 88 NR NR
Rhode Island 25 NA 337 NR
Utah 27 46 63 456
Washington 29 43 17 NA
Wisconsin NA 400 1,400 NR
Total 194 4,039 14,516 887
TRAINING-CAPACITY-BUILDING OUTCOMES
NA= Not Applicable; NR= Not Reported (data not available)
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REDUCING BARRIERS THROUGH INSURANCE COVERAGE
Missouri – 2010 legislation requires coverage for diagnosis and behavioral therapy for children with ASD through age 18; grantee is increasing the number of trained therapists in applied behavior analysis. Rhode Island – In August 2011, the Governor signed legislation mandating private health insurance coverage for ASD screening, diagnosis, and treatment.
New Mexico – Grantee and other stakeholders worked with Medicaid program to develop a service definition of adaptive skill building for home-based intensive behavioral supports for children 0-5.
Wisconsin – Grantee developed diagnostic guidelines for Medicaid coverage under State’s Children’s Long-Term Support Medicaid Waiver.
Private Coverage Mandates
Medical Coverage
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REDUCING BARRIERS THROUGH SERVICE GUIDELINES
Rhode Island – Convened diagnosticians to establish standard diagnostic standards, evaluation components, and assessment tools. Alaska – Held health conference with rural and tribal health officials to standardize practices and integrate ASD screenings into Medicaid EPSDT program.
Alaska – Coordinated with UCEDD to start a capacity-building program that created a network of 20 Board Certified Behavior Analysts. New York – Worked to have the State authorize use of paraprofessionals in EI agencies to help provide intensive behavioral interventions for children with ASD.
Standardized Service Guidelines
Increasing Workforce Capacity
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REDUCING BARRIERS THROUGH FAMILY ENGAGEMENT
Missouri’s Family Resource Specialists have
served 389 youth transitioning to adult
services
Alaska and its Family2Family
Information Center is increasing the number of
Parent Navigators
Family Resource Specialists Members of
statewide advisory councils
Parents
In New Mexico, multiple family
members participate on its advisory board
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STATE INFRASTRUCTURE BUILDING
Collaborative statewide partnerships and planning structures to plan and develop State systems with a shared vision and commitment of resources
Grantee Highlights
Washington Combating Autism Advisory Council • The grantee and LEND program formed CAAC, a statewide advisory body, to guide
implementation of the State’s autism plan and oversee grantee activities, including a statewide community-mapping project and annual regional autism summits.
Alaska Autism Alliance • Alliance (grantee steering committee) formed to implement State’s autism plan, and
bridge grant efforts to other State work groups in early childhood, developmental disabilities, comprehensive care, and special education systems.
Wisconsin Community of Practice • The grantee formed a statewide council of 227 stakeholders to share information,
and a steering community of parents, researchers physicians, and LEND trainees. 82
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REGIONAL AND COMMUNITY-BASED SERVICE NETWORKS
Wisconsin – Regional Core Teams and Resource Mapping through 5 public health regions. Regional liaisons host trainings and establish a core team that does regional resource mapping. Illinois – Added 7 regional service centers and 2 outreach centers to The Autism Project’s service providers network, to provide at a regional level integrated programming and supportive services
Alaska – Community Listening visits to rural and tribal communities as part of week-long traveling neurodevelopmental outreach and screening clinics. Washington – Community Asset Mapping process to improve communication and referral processes among community providers, families, and State’s 5 autism centers.
Building Regional Networks
Building Local Capacity
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INTEGRATED, FAMILY-CENTERED MEDICAL HOMES
Medical Home Learning Collaboratives
Multiple providers together implement practice changes
Collect and report data to monitor results
Utah’s Medical Home Learning Collaborative:
Used a learning collaborative approach to train 32 family and pediatric medical homes and 3 dental/medical home practices teams to improve their use of the M-CHAT on all 18- and 24-month well-child visits , to increase timely referrals, and to use a family-centered approach to care. • Screening increased from 22% to 92% in 2009 cohort • Screening increased from 35% to 95% in 2010 cohort 84
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IMPROVING YOUTH TRANSITION SERVICES
Missouri Youth Coalition developed an ASD youth training module, a written guide to transition services, and a Web site with transition resources for youth, families, and service providers.
Rhode Island developed maps for navigating various support services for youths with ASD (e.g., vocational, employment, housing support, etc).
New Mexico co-sponsored a Transitions to Adulthood conference.
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AREAS OF IMPACT
Building Capacity:
More providers and families receiving necessary resources
Reaching People:
More hearing messages about signs, early screening, and
treatment
Strengthening Partnerships:
More coordination and collaboration among
stakeholders
Enhancing Skills:
More families and primary care, child care, and early-intervention providers building needed skills
On the Path to
Early Screening
and Diagnosis
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CONCLUSION
Co
nclu
sion
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MCHB’S CAAI: CONNECTING RESEARCH, TRAINING, & INFRASTRUCTURE DEVELOPMENT
TO IMPROVE SYSTEMS OF SERVICES FOR ASD
Research
ImplementationTraining
SYSTEMS CHANGE
EXPANDING IMPACT THROUGH COLLABORATION
MCHB’s multipronged approach “fits” the broad, long-term goals of the Combating Autism Act
Common funding source facilitates information sharing and builds a more robust collaborative network
Cross-program collaborations create efficiencies and promotes a coordination, as experts in different areas learn from each other and work toward common goals
Collaboration within and across programs allows Federal investments to be stretched further through leveraging of resources
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Co
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sion
How to Ask A Question
Type your questions into the
‘question’ box on your Webinar
dashboard
The moderators will read the
questions
Introducing the Combating Autism Act
Initiative Webinar Series The CAAI Webinar series, “Research to Practice” will showcase successes of CAAI
grantees, connect attendees with other CAAI grantees, and inform each other of activities happening within the initiative. The series will run from April
through August 2012.
This webinar series replaces the annual face-to-face conference for CAAI.
Results from an Evaluation of the Combating Autism Act Initiative
TODAY!
Improving Family Involvement through the Combating Autism Act Initiative
May 14, 2012 @ 2:00 - 3:30pm EDT
Identification, Diagnosis, and Referral of Children with ASD/DD
June 2012
Innovative Intervention for Children on the Spectrum
July 2012
Service Delivery for Children with ASD
August 2012
