Expanding the National Core Indicators for Aging and Disability Services.

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1 Expanding the National Core Indicators for Aging and Disability Services

2 NCI-AD Joint project of NASUAD, Human Services Research Institute (HSRI), and NASUAD members Standard set of measures used across states to assess the quality of life and outcomes of individuals served by publicly funded aging and disability service systems. The National Core Indicators have existed for the Intellectual/Developmental Disabilities community since Developed by National Association of State Directors of Developmental Disability Services, HSRI, and NASDDDS members. NASUAD is expanding the tool to include populations of older adults and people with physical disabilities. (NCI-AD)

3 NCI Participating States

4 The New NCI-AD In 2011, NASUAD s Board voted to begin work to expand the scope of the current NCI to include older adults and adults with physical disabilities receiving services in their state. Grew out of a concern about the limited information currently available to help states assess the quality of LTSS services for seniors, adults with physical disabilities, and their caregivers. NASUAD, with support from their Steering Committee, began working with HSRI and NASDDDS to expand NCI to include this new focus. Began with the revision of the in-person Consumer Survey. Currently piloting the new survey in Georgia, Minnesota, and Ohio.

5 How does NCI-AD Work? Participating states are asked to compile a sample of at least 400 older adults and individuals with physical disabilities receiving publicly-funded services. State or their contractor then conducts in-person NCI-AD interviews with survey participants. State compiles final data and shares data with HSRI. HSRI interprets data and provides state-specific report and state-to-state comparison report. Page 5

6 Purpose of NCI-AD To support state agencies interested in measuring the performance of public systems of support and Measure the quality of life and outcomes of individuals served. To allow for state to state comparisons and service comparisons within states. To provide data at the systems level on outcomes. To assist states to improve the quality of services and supports. Premise: Improving performance starts with measuring performance if you don t measure it, no guarantee that it will happen. Measuring outcomes is imperative. Page 6

7 What are the Core Indicators for NCI-AD? Measurements that get at consumer outcomes: Community Participation Choice and Decision-making Service and Care Coordination Rights and Respect Health, Safety, and Wellness Relationships Everyday Living and Affordability Work/Employment Self-Direction 7

8 Measures Offer a Unique View Individual characteristics of people receiving services Locations where people live Activities they engage in during the day, including whether or not they are working Nature of experiences with the supports they receive (e.g., with case managers, ability to make choices) Context of their lives friends, community involvement, safety Health and well-being Future planning 8

9 How Have States Used the NCI Results?

10 NCI Provides Information for HCBS Assurances and New Setting Requirements States can use NCI as supplemental data to bolster evidence of compliance with CMS assurances specifically Plan of Care and Health and Welfare Given the new requirements for community settings, NCI can be used by states to provide evidence to CMS that the settings requirements are being met and/or that milestones in state transition plans have been achieved (e.g., privacy, choice of roommates, etc.) The new requirements include specific direction to states regarding the person centered planning process many of the NCI indicators are relevant to the new requirements (e.g., does your case manager ask you what you need, etc.) 5/21/

11 Examples of How States Use NCI Data New York Publishes comparison data against other states Targets campaigns to decrease obesity rates Georgia Initiative to reduce the use of psychotropic medication Arizona Prioritizes efforts on case manager choice, health, loneliness, employment Kentucky Issues formal report on service quality and community participation Washington State Issues report back on strategies to address recommendations. Massachusetts Tracks and acts on health and wellness and safety data 11

12 Example - Georgia NCI Data Brief released in 2012: 53% were taking medication to address at least one of: Mood disorders Anxiety Psychotic disorders Behavior challenges Taking meds was related to living in group homes, poorer health, overweight and obesity

13 Example - Georgia 88% with psychiatric diagnosis taking med for mood, anxiety or psychotic disorders BUT 30% without diagnosis also taking meds for at least one condition Of those taking meds for at least one condition, 41% did not have psychiatric diagnosis. No mental illness/ psychiatric diagnosis Mental illness/ psychiatric diagnosis Did not take medications for mood, anxiety or psychotic disorders Took medications for mood, anxiety or psychotic disorders 70% 30% 12% 88%

14 Example - Georgia These findings prompted GA to look at their data on psychotropic drug use: Georgia NCI data demonstrated an increase in proportion of individuals with I/DD who use these medications; from 36% in fiscal year to 51% in fiscal year

15 Example Georgia Results NCI: Percentage of psychotropic drug use dropped for first time in fiscal year to 41%.

16 Example Kentucky: Quality Improvement Committee Recommendation Report, 2010 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. 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. 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. Goal 4: Loneliness - Increase the overall percentage of SCL recipients who report having friends who are not staff or family by 10%,

17 Example Kentucky Efforts Related to Recommendation Report 2010 Example 1: In response to the recommendation regarding employment Waiver was revised and approved to reflect: 1) a nearly 100% increase for the supported employment rate and, 2) a decrease in the day activity services rate of 11%. Collaboration with the Kentucky Office of Vocational Rehabilitation was increased

18 Example Kentucky Efforts Related to Recommendation Report 2010 Example 2: In response to the recommendation regarding health and exercise: Waiver was revised and approved to include a new service: community access Collaboration with the Human Development Institute at the University of Kentucky and the University of Illinois-Chicago Pilot projects around an evidence based health and wellness curriculum Pilot self-advocate led program at 14 provider agencies, impacting over 100 individuals on the SCL waiver.

19 Other uses of NCI data

20 Public Reporting Reports: Consumer Outcomes Final Report Family Survey Final Reports State Reports Annual Report User-Friendly Reports Special Reports

21 Data Briefs Employment Psych meds Dual diagnosis ASD Older adults Living at home Race/ethnicity Etc

22 Published Research Examples of published research: Race and ethnicity issues in health care for people with IDDD --Accepted for publication, Medical Care. Choices in everyday life of people with ID/DD-- Journal of Intellectual and Developmental Connection between where people live and their access to health care --Public Health Reports, Volume 127: Characteristics of people with autism receiving public services -- Research in Autism Spectrum Disorders, (2): Obesity issues among people with ID/DD Journal of Intellectual and Developmental Disabilities Characteristics of people with Down Syndrome in 26 Journal of Intellectual and Developmental Disabilities

23 Data Available to Others NCI makes data available to Ph.D students and other researchers based on formal proposals reviewed by the NASDDDS Research Committee

24 Interactive Website Annual Data Reports State Summary Reports Data Briefs Articles National State Data Make a Chart function Technical Reports

25 NCI-AD Pilot

26 Development Process Start: NCI indicators Other tools Brainstorm Result: Approx. 120 indicators 17 domains

27 Development Process June 2013 meeting with Steering Committee Discuss each potential indicator Long day Homework: Rankings Rank each indicator from 0 (not important) to 3 (critical) 12 states - sets of rankings

28 Development Process Delphi method Summary rankings: Weighted score for each indicator: (N of 0s)*0 + (N of 1s)*1 + (N of 2s)*2 + (N of 3s)*3 = Total score Possible range: 0 to 36 Observed range: 10 to 35 Mean: 20.9, Median: 21 Number of indicators cut by half: 1) Above median 2) Different look: exclude total score less than 16, no 3s and fewer than 8 2s, total number of 2s and 3s less than 8 Expert opinion Result: 61 indicators, 17 domains

29 Development Process 61 indicators Draft survey questions Draft background section Risk-adjustment level the playing field Describing the population Focus/drill down into sub-populations Meeting with Steering Committee and Board on 9/7/2013 Discuss first draft

30 Development Process 2 Focus groups In-person testing Validity Cognitive testing Inter-rater reliability Total of 7 revisions After in-person testing last revision December 2013 final draft of NCI-AD Consumer Survey, version 1

31 Development Process - Pilot 3 pilot states: MN, GA, OH Recipients of aging services through HCBS Waiver Recipients of aging services through OAA Recipients of non-dd disability services through HCBS Waiver Each state to collect at least 400

32 Development Process - Pilot MN: over 300 interviews completed GA: approximately 100 interviews completed OH: training to be held in May, will begin data collection immediately Designing reliability studies Inter-rater Intra-rater Test-retest Construct validity Internal consistency All data collection to be completed by September 2014

33 Minnesota and Georgia Pilot Experience Kari Benson, Planning Coordinator, Minnesota Board on Aging Arvine Brown, Program Administrator, Georgia Aging Services 33

34 NCI-AD Nationwide Rollout Page 34

35 NCI-AD Timeline Now Interested states contact NASUAD June 2014 Monthly planning and technical assistance calls begin March 2015 Final commitments from new states due March-June 2015 Interviewer training June 1, 2015 Interviews begin Page 35

36 Two Rounds of Data Collection June 1, 2015: Interviews Begin September 30, 2015: First round of data collection due May 31, 2016: Second round of data collection due December 2015: Draft state-by-state reports available October 2016: Draft state-by-state reports available December 2016: Final NCI-AD Year 1 report available 36

37 For additional information Kelsey Walter, Director of NCI-AD, NASUAD Julie Bershadsky, Research Associate, Project Director of NCI-AD, HSRI Page 37

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