The National Autism Data Center: Building Gauges To Measure National .

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

The National Autism Data Center: Building Gauges to Measure National Progress on Transition Outcomes Paul Shattuck

Disclosure I have no relevant financial or nonfinancial relationship(s) with the products or services described, reviewed, evaluated or compared in this presentation.

What’s a Data Center?

What’s a Data Center? Anne Roux Jessica Rast Bushraa Khatib

Why a Data Center? National-level challenges require nationallevel 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

National Autism Data Center Overall Concept 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

www.drexel.edu/autismoutcomes

National Autism Data Center NADC process 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

National Autism Data Center NADC process 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

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?

Source: NLTS2 The services cliff 100% high school adulthood 67% 66% 58% 54% 51% 42% 41% 32% 30% Occupational Therapy Mental Health 22% 12% 10% 0% Case Management SpeechLanguage Therapy Social Work Personal Assistant

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. 100% 80% 60% 40% 79% Income 25K Income 75K 45% 20% 0% 13% Lowest Skill 3% Highest Skill Shattuck et al, 2012. Pediatrics 129(6).

Source: NLTS2 One-third ever attended post-secondary education.

Source: NLTS2 Half ever held a job.

Source: NLTS2 One-quarter were socially isolated across all three indicators

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

National Autism Data Center Fact sheets

National Autism Data Center Info maps

National Autism Data Center Infographics

National Autism Data Center NADC process 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

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”?

My transition to adulthood By Ivanova Smith UW LEND Advocate Faculty

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! This webinar will be archived and available in 3 to 5 business days on AUCDs Webinar Library: http://www.aucd.org/resources/webinars.cfm Please take a few minutes to complete our survey!

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) . 9/9/2016 12:26:30 PM .

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