A Life Course Perspective on Autism and the Transition to...

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

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 onPopulation-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

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

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?

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

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.


About 1 out of 4 disconnected youth ALSO had no access to services since high school – doubly disconnected.

Current findings

How are the characteristics of youth on the autism spectrum changing over time?

Mental health conditions (12-17 years)

25%

54% 60% 61%

86%

62%

0%

20%

40%

60%

80%

100%

DepressionAnxiety

ADHDConduct

1+ 2+

Current findings

What are the most recent findings about youth on the autism spectrum?

National Autism Data Center

Family financial burdenMore children with ASD live in low-income households compared to children with other special health care needs.

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.

Work experience: 16-19 years

Roux 2020

Enhancing transition outcomes

• Early Vocational Rehabilitation servicesJob-related servicesPost-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

EMPLOYM

ENT RA

TE AT VR

EXIT

NUMBER KEY VR SERVICES RECEIVED (MEAN)

Student YouthNon‐Student YouthYoung 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

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

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

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


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

Program funding• Blended vs Braided funding

School District

Vocational Rehabilitation

Community Agencies

Philadelphia International Airport Builds an Inclusive Workforce


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)

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

Anne [email protected]

Resources on handout

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

A Life Course Perspective on Autism and the Transition to...

Documents

Transcript of A Life Course Perspective on Autism and the Transition to...