The National Autism Data Center: Building Gauges to Measure National

Progress on Transition Outcomes

August 31, 2016

Presented by Dr. Paul Shattuck and Ivanova Smith

A Webinar from AUCD's Autism Special Interest Group (SIG)

The National Autism Data Center: Building Gauges to Measure National

Progress on Transition OutcomesPaul Shattuck

I have no relevant financial or nonfinancialrelationship(s) with the products or servicesdescribed, reviewed, evaluated or comparedin this presentation.

Disclosure

What’s a Data Center?

What’s a Data Center?

Anne Roux Jessica Rast Bushraa Khatib

Why a Data Center?

• National-level challenges require national-level data to inform solutions

• Usual approaches often don’t help: Not accessible, Not holistic, Not strategic or relevant with respect to policy

• “For a group to count, they first have to be counted”

Why a Data Center?• Billions spent on services, no population-level

data on needs & impacts – What do people need vs. what they get?– What are the outcomes?

• Are we “moving the needle”? We need gauges to tell

• Data influences problem awareness, interpretation and decisions. The field of ASD is way behind other areas…

• Use existing data, capitalizing on money already spent

• Create information products that are accessible, understandable and impactful

• Set agenda for future research and data collection endeavors by identifying gaps between available data vs. needed data

National Autism Data Center

Overall Concept

www.drexel.edu/autismoutcomes

Collect, organize, and compile national sources of data

Produce info products from the data that can aid in decision making

Repeat across data sources and years

NADC process

National Autism Data Center

Collect, organize, and compile national sources of data

Produce info products from the data that can aid in decision making

Repeat across data sources and years

NADC process

National Autism Data Center

National Autism Indicators Reports

• Our big flagship information product• Annual production cycle• Steering committees include autistics,

family members, lobbyists, topic experts• Heavy emphasis on usability• Holistic approach

What is an Indicator?

National Autism Data Center

Indicators Research Impacts• Meetings with legislators and agency staff

– GAO consulting– Congressional caucus briefings

• Media coverage, ↑ issue awareness– NPR, USA Today, etc.

• Social media engagement, 10k+ followers• Scientific impact: IACC top 20 studies

Data Sources

• National Longitudinal Transition Survey 2 (NLTS-2)

• Survey of Pathways to Diagnosis and Services

What were the characteristics of youth at the time of transition?

Characteristics at age 17

Characteristics at age 17

Health, Mental Health and Health Care

Health, Mental Health and Health Care

What happened to transition-age youth with autism between high school and their early 20s?

67% 66%58%

54% 51%

41%42%

10%

22%

12%

32% 30%

0%

100%

Case Management

Speech-Language Therapy

Social Work Personal Assistant

Occupational Therapy

Mental Health

Source: NLTS2

high schooladulthood

The services cliff

Outcomes and Disconnection

The purpose of transition planning is to connect youth to employment or continued education after high school

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

Source: NLTS2

Disconnection levels are high in those with lower level skills and lower income.

79%

13%

45%

3%0%

20%

40%

60%

80%

100%

Lowest Skill Highest Skill

Income < $25KIncome > $75K

Shattuck et al, 2012. Pediatrics 129(6).

One-third ever attended post-secondary education.

Source: NLTS2

Half ever held a job.

Source: NLTS2

One-quarter were socially isolatedacross all three indicators

Source: NLTS2

Living Arrangement

Group comparisons

Young adults with autism fared worse relative to those with other disabilities.

Source: NLTS2

Rates of employment

Source: NLTS2

Rates of independent living

Source: NLTS2

Rates of social isolation

Other Information Products

Fact sheets

National Autism Data Center

Info maps

National Autism Data Center

Infographics

National Autism Data Center

Collect, organize, and compile national sources of data

Produce indicators from the data that can aid in decision making

Repeat across data sources and years

NADC process

National Autism Data Center

drexe.lu/autismindicators16

Next Directions• More topics and data sources:

– SSI and VR– Timing of Dx and entry to early care services– National Core Indicators– NLTS2012

• Seeing if things are getting better over time:– Employment– Social inclusion and participation

• IF we can get the work funded…

What will it take to “move the needle”?

By Ivanova Smith UW LEND Advocate Faculty

My transition to adulthood

Importance of a early start!• my Mother’s determination!

Money management

• Learning about money and how to use it.

Preparing for Graduation

• I had to think about what I was going to do after high school

Going to college and work• My first work experience. • The long journey that got me to be alumni of Central

Washington University!

Learning about relationships

• Being encouraged to have relationships with others and developing it in to a lifetime marriage.

Getting in to my career

• Advocating for all people with I/DD to be able to lead their lives!

THANK YOU!

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