nasddds aucd/core webinar conference march 15, 2011 · nci, seln) • provides oversight for the...
TRANSCRIPT
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NASDDDS/AUCD Evidence-Based Policy Initiative:
Discovering and Doing What Works
NASDDDS – AUCD/CORE
Webinar Conference
March 15, 2011
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Webinar Overview
• Introductions and Overview
• Presentation (Part One)
– Dr. Charlie Lakin & Dr. Charles Moseley
• Part One Q & A (submit questions by typing into the „questions‟
box on your webinar control panel)
• Presentation (Part Two)
• Dr. Harold Kleinert & Dr. Steve Hall
• Part Two Q&A (submit questions via chat box or select “raise
my hand” and your line will be un-muted)
• Survey
– Please complete our short survey to give us feedback for
the next webinar!
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Council on Research and Evaluation (CORE)
CORE strongly supports the EBPI: 1. Conduct a survey to identify potential authors for EBPB
https://qtrial.qualtrics.com/SE/?SID=SV_835t8IlZOoy5QkQ
2. Sponsor additional webinars on research that informs policy. Next Webinar: April 12, 2011 at 2:00 pm EST Health Care for Persons with ID/DD: Trends, Characteristics and
Challenges 3. Encourage CORE members to write Evidence Based Policy Briefs and
implement Evidence Based Policy decisions
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Webinar Purpose: Introduce Evidence Based Policy Initiative
•Describe the joint NASDDDS/AUCD initiative
•Introduce key activities and products
•Provide examples of collaborative activities
•Recruit individuals and organizations to the Initiative
•Answer your questions
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Why this NASDDDS/AUCD Collaboration?
• Need to work together to identify and document research
evidence in support of progressive policy and practice
• Competition for resources
• Expectations for efficiency/cost effectiveness
• Demand for data-based decisions
• Attention to the sustainability of systems
• EBP Initiative is a “natural” point of collaboration between
public agencies and universities
• Desire for accessible information by all stakeholders
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Increased Focus on Sustainability in DD
Systems
• What can we (and future generations) afford?
• What can we justify based on:
– Relative costs of various options?
– Resources spent in comparison with others in need?
– Outcomes achieved for resources spent?
• What should we justify based on the need to:
– Support the most integrated settings,
– Employment and community participation
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NASDDDS Research Committee
• Advises NASDDDS Board and staff on a Research Agenda that:
– Responds to the NASDDDS Strategic Plan goals
– Furthers NASDDDS‟s mission, goals and guiding principles
– Maximizes usefulness and use of NASDDDS projects (e.g., NCI, SELN)
• Provides oversight for the NCI program
– Approves changes in NCI policies, surveys and practices
– Approves requests for NCI data
– Identifies collaborators in data-gathering and dissemination (e.g., AUCD)
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Major Parts of Evidence-Based Policy Initiative
• Identifying and Synthesizing Existing Evidence
-Too little research is accessible to policymakers
-Need brief authoritative summaries
-Need credible partners with research credentials
-AUCD/NASDDD synergy
• Gathering and Analyzing Original Data
-Policymakers need data that responds to current issues
-Need reliable and accessible data
-Need data for comparison of programs/funding
-Need data for complex questions (low incidence disabilities,
controlling for related factors)
-AUCD/NASDDD partnership‟s focus NCI
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NASDDDS: “Evidence-Based Policy”
Evidence-Based Policy is the responsible application of best
available evidence to the design and management of
programs, services and supports for persons with
developmental disabilities in a manner consistent with
achieving greater independence, productivity, inclusion and
exercise of free will for individuals and cost-effectiveness in
public expenditures.
Adopted NASDDDS Research Committee, 2009
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The Evidence-Based Policy Commitment
We recognize that:
•Individual policymakers do not control all aspects of
policymaking, and that competing interests may impede
application of the best evidence.
But we believe that:
•Individual policymakers have a responsibility to acquire,
understand and interject best evidence into policy deliberations.
Because we know that:
•Failure to use the best available evidence in policymaking
reduces the likelihood of benefit and increases the likelihood of
detriment in services provided to people with disabilities
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Challenges of Using Evidence in Policy
•Social research seldom produces unequivocal results;
must accept preponderance of good evidence
-Conflicting interests “cherry pick” research
-Need comprehensive summaries
-Need authoritative interpretations
•Clinical trials with random assignment is difficult in real
life; but good evidence can still guide decisions:
-Seat belts
-Second-hand smoke
-Speed limits
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Policymakers radically diminish the potential
of reforms if they allow themselves to be
walked into accepting impoverished definitions
of credible evidence.
Lisbeth Schorr
Education Week, August 25, 2009
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Evidence-Based Policy Begins with:
Evidence: 1. “The data on which a conclusion or
judgment may be made < glacial evidence of
climatic change>”
Webster‟s New College Dictionary
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Future Policy Will Be Affected by Growth in Persons
with Disabilities
9.1%6.0%
15.1%*
34.7%*
20.2%*
41.3%*
0%
5%
10%
15%
20%
25%
30%
35%
40%
45%
Between 2010-2020 Between 2020-2030
Total US Population
People with Disabilities
People 65+ in Long-Term Service
American Community Survey, 2006,
*Assume rates of disability and institutionalization remain the same as 2006
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(From Keeping the Promise: Self-Advocates Defining the Meaning of Community)
States Need to Data Consistent with
Promised Outcomes and Available Resources
• Increasing self-determination and personal control in decisions and their families
• Providing opportunities to live, work and participate in their own communities
• Improving quality of life for individuals and families as they define it
• Supporting families as the most important and permanent unit of development,
protection, and lifelong assistance
• Investing in each individual‟s developmental potential and capacity to contribute
• Assuring access to sufficient, high-quality health and social supports to protect
each person‟s health, safety, rights, and well-being
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NASDDDS Members‟ Evidence-Based Policy Needs
• Comparative developmental outcomes associated with moving to community settings from large
facilities/institutions.
• Trends, characteristics and outcomes of adults with developmental disabilities or autism living in the
family home.
• Costs and outcomes for families of supporting adults with developmental disabilities living in the family
home.
• Trends, costs and outcomes of host family and companion models of support for adults with
developmental disabilities.
• Trends, characteristics, outcomes and challenges experienced by individuals and families directing their
own services.
• Individual, program and policy factors are associated with the number of people with ID/DD in
integrated employment.
• Effects of general or specific models of staff training on outcomes for service recipients; lower staff
turnover, higher morale, lower costs, etc.
• Given NCI data on high levels of loneliness among adults with developmental disabilities, what programs
and service models appear effective in response?
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1) Selecting and validating the research question
2) Establishing inclusion criteria for research
3) Identifying the relevant research
4) Choosing of an appropriate methodology for research synthesis 5) Developing a format for data abstracting
6) Abstracting and synthesizing the research reviewed
7) Creating tables and charts to present the findings 8) Writing a clear and succinct narrative (4 pages) 9) Submitting the draft Brief for editorial review
10) Finalizing the Brief based on editorial feedback. 11) Linking a comprehensive review including references (journal, EBP website, etc.)
Evidenced-Based Policy Brief Author Guidelines for:
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How to Ask a Question
• Type you question directly into the „question‟ box
on your webinar control panel
• The moderators will read the questions
Q & A -Part One
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Using National Data Sets to
Inform State Level Policy
Harold L. Kleinert, Ed.D., HDI Steve Hall, PhD, Commissioner KY Dept of Behavioral
Health, Developmental and Intellectual Disabilities Kathy Sheppard-Jones, PhD, HDI
March 15, 2011
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KY History Participation with National Core Indicators
• Participated Continuously Since 1998
• At least 400 Face-to Face Interviews of Individuals Receiving Services Per Year
• These Data Provide for Analysis of Longitudinal KY Trends and Comparisons to National Data*
• In 2008, we sampled solely individuals receiving services from our Supports for Community Living Waiver
* 2008 – 9 NCI states used a variety of sampling methods. Some states sampled their entire service population, others solely waiver. See Appendix B in Consumer Final Report for sampling procedures.
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KY Quality Improvement Committee • The KY National Core Indicators Quality
Improvement Committee (QIC) was convened in 2010 at the request of the KY Division of Developmental & Intellectual Disabilities (DDID).
• The QIC was established to review and make recommendations regarding the quality assurance and improvement elements and activities within the Supports for Community Living Waiver.
• Major Focus was upon the NCI Data.
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Members of the QIC
• Family members receiving services
• Self-advocates
• KY NCI interviewers
• KY NCI staff
• University researchers
• KY Division of Developmental and Intellectual Disabilities staff.
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Two Primary Questions (Primary Tool NCI Data)
• What is going really well for individuals supported by KY’s Waiver?
• What are critical strategic areas that need to be immediately addressed?
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What is Going Well: Self-Advocacy
49
.5%
50
.5%
68
.0%
32
.0%
0%
20%
40%
60%
80%
100%
No Yes
Person Has Participated in Self-Advocacy Group/Meeting
Kentucky
Average of NCIStates
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Choosing a Place to Live
36
.8%
63
.2%
53
.3%
46
.7%
0%
20%
40%
60%
80%
100%
No Yes
Consumer Chose The Place He/She Lives
Kentucky
Average of NCIStates
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Feeling Safe in One’s Neighborhood
5.9%
94.1%
15.8%
84.2%
0%
20%
40%
60%
80%
100%
No Yes
Consumer Feels Safe In Neighborhood
Kentucky
Average ofNCI States
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Strategic Areas of Focus Where KY Data Indicated Significant Need for Change
Employment
Health and Exercise
Medications
Loneliness and Friendships
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KY Employment Data
81
.5%
18
.5%
62
.2%
37
.8%
0%
20%
40%
60%
80%
100%
No Yes
Person Has A Job In Community*
Kentucky
Average of NCIStates
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QIC Recommendation
• Goal 1: Employment
• Increase the overall percentage* of SCL recipients with jobs in the community** by 5% as reported in the next NCI 12 month data cycle.
• *When determining percentage, the numerator = SCL recipients with jobs in the community. The denominator = all SCL recipients.
• ** a job in the community refers to competitive or supported employment.
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Health and Exercise
87.8%
12.2%
80.9%
19.1% 15.6%
84.4%
0%
20%
40%
60%
80%
100%
No/Don't Know Yes
Person Engages In Moderate Physical Activity For At Least 30 Minutes 3 Times A Week
Kentucky
Average of NCIStates
KY GeneralPopulationSurvey
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Health and Exercise Continued
76
.6%
23
.4%
51
.4%
48
.6%
0%
20%
40%
60%
80%
100%
No Yes
Consumer Went Out For Exercise In The Past Month
Kentucky
Average of NCIStates
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QIC Recommendation
Goal 2: Health & Exercise • Increase the overall percentage* of SCL
recipients who engage in moderate physical activity for thirty minutes a day at least three times a week by at least 5%, as reported in the next NCI 12 month data cycle.
• *When determining percentage, the numerator = SCL recipients engaged in moderate physical activity for thirty minutes a day at least three times a week. The denominator = all SCL recipients.
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Medications
28.6%
71.4%
51.3% 48.7%
0%
20%
40%
60%
80%
100%
No/Don't Know Yes
Consumer Takes at Least One Mood, Anxiety, Behavioral, or Psychotic Medication
Kentucky
Average of NCIStates
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QIC Recommendation
Goal 3: Medications
• Decrease the overall percentage* of psychotropic medications used by SCL recipients in residential settings by 10%, as reported in the next NCI 12 month data cycle.
• *When determining percentage, the numerator = SCL recipients in residential settings given psychotropic medications. The denominator = all SCL recipients.
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Loneliness and Friendships
26
.8%
73
.2%
56
.6%
43
.4%
70
.6%
29
.4%
0%
20%
40%
60%
80%
100%
No Yes
Person Feels Lonely
Kentucky
Average of NCIStates
KY GeneralPopulationSurvey
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Friends Who Are Not Staff and Family
64
.9%
35
.1%
26
.7%
73
.3%
0%
20%
40%
60%
80%
100%
No Yes
Person Has Friends Who Are Not Staff Or Family
Kentucky
Average of NCIStates
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QIC Recommendation
Goal 4: Loneliness
• Increase the overall percentage* of SCL recipients who report having friends who are not staff or family by 10%, as reported in the next NCI 12 month data cycle.
• *When determining percentage, the numerator = SCL recipients who report having friends who are not staff or family. The denominator = all SCL recipients.
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Employment: A Linchpin Indicator…
Those Who Were Employed Reported Higher NCI Indicators In Nearly All Domains:
• Less Lonely (53.6% to 73.1%)
• Friends in Addition to Family and Staff (50.0% to 29.3%)
• Healthy BMI (28.0% to 19.3%)
• Going Out for Exercise in Last Month (35.7% to 20.4%)
• Vacation in Last Year (60.7% to 26.5%)
• Physical Activity in Last Month (23.7% to 11.2%)
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How to Ask a Question
• Type you question directly into the „question‟ box
on your webinar control panel
OR
• Raise your hand by entering your AUDIO PIN
and clicking „raise my hand‟- your line will be un-
muted
Q & A -Part Two
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Thank You!
For more information visit the Websites:
NASDDDS/AUCD Evidence-Based Policy Initiative http://evidence-
basedpolicy.org
AUCD Website: http://www.aucd.org
CORE Website: http://www.aucd.org/template/page.cfm?id=65
This and all of AUCD‟s webinars can be found at in our „Webinar Library‟ at
www.aucd.org/resources/webinars.cfm
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