NASDDDS/AUCD Evidence-Based Policy Initiative:

Discovering and Doing What Works

NASDDDS – AUCD/CORE

Webinar Conference

March 15, 2011

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!

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

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

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

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

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)

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

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

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

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

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

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

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

(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

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?

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:

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

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

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.

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.

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.

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?

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

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

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

Strategic Areas of Focus Where KY Data Indicated Significant Need for Change

Employment

Health and Exercise

Medications

Loneliness and Friendships

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

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.

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

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

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.

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

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.

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

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

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.

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%)

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

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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