The National Autism Data Center: Building Gauges to ...NADC process. National Autism Data Center....
Transcript of 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)
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The National Autism Data Center: Building Gauges to Measure National
Progress on Transition OutcomesPaul Shattuck
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I have no relevant financial or nonfinancialrelationship(s) with the products or servicesdescribed, reviewed, evaluated or comparedin this presentation.
Disclosure
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What’s a Data Center?
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What’s a Data Center?
Anne Roux Jessica Rast Bushraa Khatib
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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”
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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…
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• 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
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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
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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
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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
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What is an Indicator?
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National Autism Data Center
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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
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Data Sources
• National Longitudinal Transition Survey 2 (NLTS-2)
• Survey of Pathways to Diagnosis and Services
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What were the characteristics of youth at the time of transition?
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Characteristics at age 17
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Characteristics at age 17
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Health, Mental Health and Health Care
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Health, Mental Health and Health Care
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What happened to transition-age youth with autism between high school and their early 20s?
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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
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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
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Outcomes and Disconnection
About 1 out of 4 disconnected youth ALSO had no access to services since high school –doubly disconnected.
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Outcomes and Disconnection
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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).
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One-third ever attended post-secondary education.
Source: NLTS2
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Half ever held a job.
Source: NLTS2
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One-quarter were socially isolatedacross all three indicators
Source: NLTS2
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Living Arrangement
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Group comparisons
Young adults with autism fared worse relative to those with other disabilities.
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Source: NLTS2
Rates of employment
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Source: NLTS2
Rates of independent living
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Source: NLTS2
Rates of social isolation
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Other Information Products
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Fact sheets
National Autism Data Center
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Info maps
National Autism Data Center
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Infographics
National Autism Data Center
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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
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drexe.lu/autismindicators16
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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…
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What will it take to “move the needle”?
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By Ivanova Smith UW LEND Advocate Faculty
My transition to adulthood
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Importance of a early start!• my Mother’s determination!
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Money management
• Learning about money and how to use it.
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Preparing for Graduation
• I had to think about what I was going to do after high school
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Going to college and work• My first work experience. • The long journey that got me to be alumni of Central
Washington University!
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Learning about relationships
• Being encouraged to have relationships with others and developing it in to a lifetime marriage.
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Getting in to my career
• Advocating for all people with I/DD to be able to lead their lives!
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