The National Autism Data Center: Building Gauges to ...NADC process. National Autism Data Center....
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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)
Transcript of The National Autism Data Center: Building Gauges to ...NADC process. National Autism Data Center....
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
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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