anne roux, mphrwjms.rutgers.edu/departments_institutes/boggs... · 4/3/2020 · the boggs center...
TRANSCRIPT
Rutgers, The State University of New Jersey Liberty Plaza, 335 George Street, New Brunswick, NJ 08901
rwjms.rutgers.edu/boggscenter p. 732-235-9300 f. 732-235-9330
Anne Roux, MPH Research Scientist
A.J. Drexel Autism Institute Drexel University Philadelphia, PA
A Life Course Perspective on Autism and the Transition to Adulthood:
Using Population Data to Inform Policy and Practice
April 3, 2020
The attached handouts are provided as part of The Boggs Center’s continuing education and dissemination activities. Please note that these items are reprinted by permission from the author. If you desire to reproduce them, please obtain permission from the originator.
4/2/2020
1
A Life Course Perspective on Autism and the Transition to Adulthood:
Using Population Level Data to Inform Policy and Practice
Anne Roux, MPHResearch Scientist, A.J. Drexel Autism Institute
Drexel University, Philadelphia, PA
April 3, 2020
http://rwjms.rutgers.edu/boggscenter
Deborah M. Spitalnik, PhD
Executive Director, The Boggs CenterDirector, NJLEND
http://rwjms.rutgers.edu/boggscenter/links/COVID-19Resources.html
• COVID-19 National & State Resources• Plain Language Information• Resources in Support of Communication, Physical Well-Being, and Mental Health
COVID-19 Resources on The Boggs Center Website
Virtual “Housekeeping”
GoToWebinar Control Panel Handouts
• Handouts may be downloaded from the Control Panel.
• The webinar recording and handouts will also be posted on The Boggs Center web site next week: http://rwjms.rutgers.edu/boggscenter/dd_lecture/audio.html
Questions
• We are planning to have a brief Question and Answer session at the end of the lecture.
• In order to ask a question, you have to type it in the Questions section of the Control Panel.
Certificates of Attendance for Continuing Education Recognition
To receive a Certificate of Attendance, you must:
Be logged onto the webinar from start to finish and
Complete the evaluation at the end of the webinar
Certificates will be emailed to attendees who meet these requirements next week
4/2/2020
2
A Life Course Perspective on Autism and the Transition to Adulthood:
Using Population Level Data to Inform Policy and Practice
Anne Roux, MPHResearch Scientist, A.J. Drexel Autism Institute
Drexel University, Philadelphia, PA
April 3, 2020
http://rwjms.rutgers.edu/boggscenter
Anne Roux, MPH
Research Scientist, A.J. Drexel Autism InstituteDrexel University, Philadelphia, PA
A Life Course Perspective on Autism and the Transition to AdulthoodAnne Roux, MA, MPH
The Boggs Center on Developmental DisabilitiesDevelopmental Disabilities Lecture SeriesApril 3, 2020
• \
Life Course Outcomes Program
• Mission = build a base of knowledge about social determinants that influence services and outcomes across the life course
What our team is working on
Population-level data about unmet needs and outcomes
Program models for working with individuals
Capacity-building models for community organizations, employers, and systems
Collaborative, community problem-solving to convene, catalyze, mobilize and align resources across sectors
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Objectives
• Understand the current state of science regarding the transition process and outcomes of young adults on the spectrum
• Describe a variety of policy and practice level interventions being implemented across the nation to address transition and improve outcomes
Topics
• Informing programs and policy with data
• Policy and practice level interventions– Making use of existing national data
– Synthesizing state documents
– Listening: interviews/ focus groups
• Innovations (Transition Pathways Initiative)
PUBLIC HEALTH FRAMEWORKS
Life Course Perspective and
WHY AREN’T WE PREVENTING “THE CLIFF?”
Defining Health
• Health = well-being
• Well-being = happiness, meaning, and self-realization
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Public Health Approach
“…the protection and improvement of community health by organized community efforts.
Includes prevention, screening, and treatment, as well as environmental and social interventions.”
Stiffman et al, 2010
Public Health ApproachWhat is the
problem?
What are the
causes?
What works? For whom?
Policy and programs
Services Research
What help do people need?
What do they get?
What are the unmet needs?
How does life turn out?
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Life Course is ecological. Life Course involves social networks.
Life Course involves systems.• Vocational Rehabilitation• Medicaid waivers• Supplemental Security Income• Special education• Postsecondary disability services• Developmental Disability services• Health services• Mental health services• … and more!!!…
Where is most research focused?
Why focus on autism?• Outcomes worse than peers with other
disability types
• Higher rates of co-occurring health and mental health conditions
• Early disconnections – delays in connecting to work or continued education
• Health disparities STATE OF THE SCIENCEAutism and the Transition to Adulthood
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A cost becomes an investment when outcomes are measured.
National Autism Data Center
Outcomes and Disconnection
About 4 in 10 youth were completely disconnected from both work and continued education opportunities during first six years after high school.
Outcomes and Disconnection
About 1 out of 4 disconnected youth ALSO had no access to services since high school – doubly disconnected.
Outcomes and Disconnection
Current findings
How are the characteristics of youth on the autism spectrum changing over time?
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Mental health conditions (12-17 years)
25%
54%60% 61%
86%
62%
0%
20%
40%
60%
80%
100%
DepressionAnxiety
ADHDConduct
1+ 2+
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Current findings
What are the most recent findings about youth on the autism spectrum?
National Autism Data Center
National Autism Data Center National Autism Data Center
National Autism Data Center
Family financial burdenMore children with ASD live in low-income households compared to children with other special health care needs.
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Current findings
What do we know about school-to-work transition for high school students on the autism spectrum?
Current findings
A little over half of parents of teens with ASD (16‐18 years) reported receiving transition planning.
Shattuck 2018
The strongest predictor of future employment as adults is employment during high school.
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Work experience: 16-19 years
Roux 2020
Work experience: 16-19 years
Roux 2020
Enhancing transition outcomes
• Early Vocational Rehabilitation servicesJob-related services
Post-secondary education supports
Services-effectiveness gap
Three times as likely to be employed if they receive job-related services.
0 20 40 60 80 100
Job placement
Job search
Supported employment
On the job supports
VR job‐related services received
Employment rates increase with receipt of more key VR services, especially for secondary students.
0.26
0.43
0.63
0.77
0.87
0.33
0.49
0.67
0.8
0.86
0.44
0.56
0.69
0.84 0.89
0 1 2 3 4
EMPLO
YMEN
T RATE AT VR EXIT
NUMBER KEY VR SERVICES RECEIVED (MEAN)
Student Youth
Non‐Student Youth
Young Adults
Key VR Services:• Job Placement• Job Search• On‐the‐Job
Supports• VR Guidance &
Counseling
Postsecondary Education Supports
Of transition-age youth with autism (TAY-ASD) who receive VR services, what percentage receive post-secondary education supports?
..but 1.6 times more likely to be employed at VR exit.Rast, Roux, Shattuck 2019
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Current findings
What do we know about health care transition for youth on the autism spectrum?
Health Care Transition
What do we know about health care transition for youth on the autism spectrum?
Croen 2015
*significantly different from adults with ASD
Health Care Transition
21% of youth with with ASD (12‐17 years) received health care transition planning services.
Rast 2017
CSHCN= children with special health care needsNo SHCN = no special health care needs
New Jersey data
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New Jersey data New Jersey data• New Jersey WIOA State plan
– Few references to autism– A “need to improve services/access to…
individuals with Autism Spectrum Disorder”– But, does not identify people with autism as an
underserved group
“While many high schools take advantage of the [VR] counselor’s expertise in vocational rehabilitation, others prefer not to include DVRS on a regular basis.”
Where you live matters• Opportunities for improvement in NJ
– Improve the percentages of youth with autism who receive VR services, and who begin these services during high school
– Improve how autism is addressed in the next state WIOA plan (in 2020)
– Improve interagency coordination between local education agencies and VR, so that high schools are routinely involving VR in special education transition planning
Take home points• Big services cliff. Frequent disconnection• Where you live matters:
– Socioeconomic position– Geographic differences
• Almost half of youth with ASD live in low-income households.
• Poverty-disability: 2-way street• Service access and outcomes are generally
worse for minority youth.
Aspirational Goals
“There is almost no research on the community participation of adults with ASD in middle or later adulthood.”
(IACC Strategic Plan 2016)
POLICY AND PRACTICEIntervening to Improve Transition
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Transition Pathways
Adapting Programs for ASDProject SEARCH + ASD uses special techniques:
• Social communication intervention
• Visual cues
• Supports for behavior and self-regulation
• Staff trained in ABA
• Addresses generalization across settings
(Wehman 2019)
Transition Pathways Initiative
• Growing collection of innovative, collaborative efforts to improve outcomes– Systems perspective
– Convene, Catalyze, Consult
– Focus on funding and policy
• Two main strategies:– ASD-specific programs
– Increase capacity of youth-serving orgs
Internship program
Enhancing transition outcomes
Project SEARCH + ASD at Drexel (video)
Project SEARCH Partners
Young Person With Autism
Education
Developmental Disabilities
Family
WIB, Union,
Advocacy Groups.
Supported Employment
Agency
Vocational Rehabilitation
Community Integrated
Services (CIS)
PA Office of Vocational
Rehabilitation (OVR)
School District of Philadelphia
Behavioral Health Behavioral Health & Intellectual
disAbility Services (DBHIDS)
Parental and Family Support
A.J. Drexel Autism Institute & Drexel
University
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Program funding
• Blended vs Braided funding
School District
Vocational Rehabilitation
Community Agencies
Philadelphia International Airport Builds an Inclusive WorkforceEnhancing transition outcomes
Project Career Launch (video)
Transition Pathways Research
• Successes
• Challenges
• Lessons learned
Model programs / other effortsMaryland Seamless Transition Collaborative (MSTC)1. Discovery2. Individualized work experiences3. Individualized paid integrated employment4. Family supports5. Early VR case initiation (2 years before exiting
school)6. Systems linkages and collaboration7. Coordination with teachers and instructional staff
(Luecking 2018)
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Model programs / other efforts
• Texas – VR– State Program Specialist for Autism = Board-
certified behavior analyst
– Extensive training infrastructure
– Premium payments for community rehab providers who provide services for those with autism
• Must have Autism Specialization Certificate from the University at North Texas
Model programs / other efforts
• Comprehensive service models: technical assistance + supported employment + community support services + therapeutic behavior services (VA)
• Extension of long-term vocational services (DE – Pathways program)
• Training of business teams/employers (KY)
• Use of autism experts, specialized staff, and standards of practice (TX)
Transition in the COVID-era
How do we support transition experiences remotely or with enhanced safety?
IDENTIFYING TARGETSIntervening to Improve Transition
Next frontier: Local level
“…the ultimate purpose of population health policy is to improve the health of individuals and populations by investing in the determinants of health through policies and interventions that affect these determinants.”
Kindig, 2007
Next frontier: Local level
• National level data doesn’t drive local action and planning
• Inclusive Cities Indicators Project
• Local level population data collection for people in a given community
• Developing methodology for collecting local data on young adults with special needs
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Anne [email protected]
Resources on handout
Q & A
Certificates of Attendance for Continuing Education Recognition
To receive a Certificate of Attendance, you must:
Be logged onto the webinar from start to finish and
Complete the evaluation at the end of the webinar
Certificates will be emailed to attendees who meet these requirements next week
Notes