1. Using Research to Inform Policy and Practice Samantha Crane Valerie Bradley Julie Bershadsky Stephanie Giordano

2. NCI-DD and NCI-AD National Overview

3. How did NCI Begin? NCI began in 1997to measure track state performance in DD systems Voluntary effort by public developmental disabilities agencies Originally 13 states took part in pilot  Currently includes 43 states, Washington D.C., and 22 sub-state entities Coordinated by HSRI and NASDDDS

4. State Participation 2015-16 I ncludes: 43 states, D.C., 22 sub-state entities

5. NCI Goals Establish a nationally recognized set of performance and outcome indicators for DD service systems Develop reliable data collection methods & tools Report state comparisons and national benchmarks of system-level performance

6. What is an “Indicator”? Indicators are standard measures used across states to assess the outcomes of services provided to individuals and families. Indicators address key areas of concern including employment, rights, service planning, community inclusion, choice, and health and safety.

7. What is NCI-AD Collaboration between the National Association of States United for Aging and Disabilities (NASUAD) and Human Services Research Institute (HSRI) Focused on older adults and people with physical disabilities being served by state LTSS systems Face-to-face survey

8. NCI-AD Development Began in 2013 and took over a year and a half Included:  Steering committee feedback  Expert panel feedback  Stakeholder feedback  Focus groups with LTSS consumers  Large-scale pilot in three states: GA, MN, OH Total of 1600 interviews completed  Small-scale pilot in GA Underwent 13 official revisions Finalized in March, 2015

9. NCI-AD State Participation 2015-2017

10. NCI-AD Purpose Gather feedback directly from service recipients Assesses quality of life, service satisfaction, and outcomes of service recipients Supports state Aging, Disability, and Medicaid Agencies interested in measuring the performance of their state LTSS systems Assists states to improve the quality of services and supports provided to individuals

11. Consumer Outcomes Measures Consumer Outcomes:  Community Participation  Choice and Decision- making  Relationships  Satisfaction  Service and Care Coordination  Access  Self-Direction of Care  Work/Employment  Rights and Respect  Health Care  Medications  Safety and Wellness  Everyday Living and Affordability  Planning for the Future  Control

12. Outcomes For Adults On The Autism Spectrum Receiving Services In 31 States Putting The Research In Context Valerie J. Bradley Human Services Research Institute vbradley@hsri.org Samantha Crane Autistic Self Advocacy Network scrane@autisticadvocacy.org scrane@autisticadvocacy.org

13. National Core Indicators (NCI) Overview Background  Autism in the USA Prevalence/Characteristics Services and Supports Differential outcomes  What is National Core Indicators? What do NCI data show about outcomes for autistic adults? Policy Recommendations

14. National Core Indicators (NCI) Terminology Preferences Within the autism and Autistic communities, a wide variety of different linguistic preferences exist, with many individuals on the autism spectrum preferring the use of “identity-first” language rather than “person-first”. Within this presentation, we will alternate between “person on the autism spectrum” and “autistic person”. See http://autisticadvocacy.org/home/about- asan/identity-first-language/ for more details.http://autisticadvocacy.org/home/about- asan/identity-first-language/

15. What Do We Know About People with Autism?

16. National Core Indicators (NCI) Autism and State I/DD Service Systems In some states, Autistic people are eligible for ID/DD services.  Often due to concomitant ID diagnosis, functional limitations, and/or state eligibility criteria that goes beyond ID  Recently, some states adopting “autism waivers.” However, the number of individuals enrolled is small.  Hewitt et al. (2012) estimated that only 8.1% of the individuals receiving public I/DD services have been assigned an ASD diagnosis.

17. What do NCI data show about Autistic adults receiving state I/DD services?

18. National Core Indicators (NCI) Other Research: Autistic Individuals Lag Behind Autistic people do not appear to have benefited to the same extent as those without autism. Research has shown:  Poorer adult life outcomes in areas such as: Independent living Community inclusion  Research has shown that teens with ASD fare worse than other students with intellectual disabilities. physical well-being, social support and psychological well-being NCI data corroborate those findings

19. National Core Indicators (NCI) c Data Source: Adult Consumer Survey Standardized, face-to-face interview with a sample of individuals receiving services  Background Information - includes health information  Section I (no proxies allowed)  Section II (proxies allowed) No pre-screening procedures Conducted with adults only (18 and over) receiving at least one service in addition to case management Section I and Section II together take 50 minutes (on average)

20. National Core Indicators (NCI) Data for This Presentation: NCI Consumer Survey Data, 2013-14  30 states + DC + 1 sub-state entity  15,525 individual surveys  Subsample identified: Diagnosis of “Autism Spectrum Disorder (i.e., Autism, Asperger Syndrome, Pervasive Developmental Disorder)” identified in background  Information on diagnoses taken from agency records  The total number of records indicating the presence of ASD was 2,277

21. Demographics Gender p<=. 001 Level of ID p<=.001 Only 25% of those who reported ASD Diagnosis are female

22. National Core Indicators (NCI) More Individuals with Autism Have a Mental Health Diagnoses ***p ≤.001 Proportions of Adult Consumer Survey respondents with reported mental health diagnoses, behavior challenges, by ASD diagnosis 49% of those with ASD have behavior challenges Autistic individuals were far more likely to be reported as receiving medications for anxiety, mood, behavior or psychotic disorders: ASD Diagnosis: 72% No ASD Diagnosis: 52%

23. National Core Indicators (NCI) More Individuals with Autism Have Guardians Guardianship status of Adult Consumer Survey respondents by ASD diagnosis ***p ≤.001

24. National Core Indicators (NCI) People with Autism Less Likely to Live in Their Own Home/Apartment 22% of those with no ASD diagnosis live in their own home or apartment. 10% of those with an ASD diagnosis live in their own home or apartment

25. National Core Indicators (NCI) Autistic Adults Are Less Likely to be Employed Employment among Adult Consumer Survey respondents by ASD diagnosis *p ≤.05 ***p ≤.001 Those with ASD diagnosis were more likely to be in unpaid activities and less likely to have paid jobs/activities

26. National Core Indicators (NCI) Autistic Adults Are Less Likely to Make Choices About Their Lives ***p ≤.001 Proportions of Adult Consumer Survey respondents with and without ASD diagnosisreporting at least some input into choices Of those with ASD Diagnosis: using a self directed supports option: 14% Of those with No ASD Diagnosis: using a self directed supports option: 8%

27. National Core Indicators (NCI) Autistic Adults Less Likely to Have Friends ***p ≤.001

28. What are the Policy Initiatives that Will Enhance Outcomes for Autistic Adults?

29. Key Policy Issues Research Long Term Services and Supports Housing Employment Legal Autonomy and Supported Decisionmaking 29

30. Research Significant disparities in autism research funding allocation In 2010, of NIH’s $217M in Autism Research, only 1.5% went towards adults and only 2.45% towards services research Need for Participatory Action Research models 30

31. Long Term Services and Supports CMS HCBS Settings Rule Significant Gap for Autistic people who do not meet institutional LoC Emerging use of state 1915i state plan authority to meet need for this population Family Support 31

32. Housing Settings rule encouraging a shift towards supported living, shared living models; States need to establish rental subsidy programs to make supported living viable; Congregate models frequently replicate the dynamics of an institution; 32

33. Employment Five states (VT, MA, OR, RI, NY) have or are committing to phasing out sheltered work; Growing Olmstead litigation around integrated employment; Integrated Day Services often key to the employment discussion; S. 1604, the Transition to Independence Act 33

34. Legal Autonomy and SDM Article 12 of the UN CRPD Texas recently became first state to adopt SDM Law; ASAN Model Legislation on Healthcare Supported Decision-Making Liability issues remain to be sorted out, especially in financial and healthcare SDM 34

35. How States Use NCI Data

36. How Data are Used General Uses Setting Priorities Quality Councils Stakeholder Engagement Monitoring People Exiting Institutions Targeted Outcomes Choice Health Relationships Employment Medication

37. Statute, policies and procedures in many states affirm that people receiving services cannot be chemically restrained, or prescribed medication that has an impact on behavior, without first conducting an evaluation to determine if there are medical causes for the behavior. Some states require functional assessments and positive behavior supports be implemented prior to use of medication. Human Rights Councils review restrictive practices and rights violations, including under what circumstance people can be prescribed multiple psychotropic medications. Annual service planning allows for review of all treatment regimens and efficacy, and the opportunity to discuss what is least restrictive and most helpful to the person.

38. Georgia Community Transition and Medication Recognized that medication use was on the rise on a statewide level  Reviewed past results and found they tended to be above the national average for people prescribed medications Tracked medication use among individuals leaving institutions Findings:  Overall people who recently moved from institutions were more likely to take medications  Among those who recently moved: Males more likely than females to be prescribed medications Those in group homes and host homes versus other setting had higher rates of meds African Americans medicated at higher rates than Whites People with mild to moderate ID compared to profound prescribed medication at higher rates

39. Georgia Community Transition Next Steps  Further Research  Increase Human Rights Councils Establish Medication Utilization Board Required pharmacy review for individuals on two or more psychotropic medications  Analysis of current transitioning process

40. Relationships and Employment People with friends are more likely to:  Have higher rate of satisfaction  Tend to be more autonomous  Participate in community events  Be employed People who are employed see many of the same outcomes

41. Arizona Relationships In 2008 set a goal to decrease the percentage of individuals reporting to be lonely, increase support to be engaged with friends, and increase participation in sports and exercise  Increased communication and information about activities in the community  Worked to increase integrated activities supported by state and advocacy groups  Encourage participation in Special Olympics, sports leagues, and other groups that focused on sports and fitness  Worked with service coordinators to address and identify how to improve loneliness, friendship, and exercise outcomes during service planning meetings

42. Arizona Employment In 2012-13 launched campaign to increase employment Employed Employment First messaging  Published employment-related articles  Updated training for service coordinators  Conducted disability training sessions  Incentivized employment through providers Targeted youth transitioning from high school  Encourage attendance by appropriate parties at transition meetings  Provided IEP meeting tool-kits for service coordinators

43. Arizona Communication In both years Arizona had additional goals to increase information to individuals and families  2008 set a goal to increase knowledge of money spent by the state for the individual and family  2013 attempted to increase awareness of activities and programs available to individuals and families Similar work done by a number of other states, includes:  Making videos online  Websites more accessible  Getting information to a broader scope of people

44. California Self-Advocate Involvement Convene a stake-holder group made-up of self-advocates Meet bi-annually to:  Review data  Discuss important issues  Make suggestions for the larger state-wide stakeholder group Work with NCI data to make improvements in their community Has led to creating the User-friendly Report and How to Use Data Guide

45. Using Data at Provider Level Julie Bershadsky Human Services Research Institute June 8, 2016 AAIDD, Atlanta GA

46. Problem General disconnect between levels/ sources/ goals of data 46 Stakeholder GroupPrioritiesListen/ Talk to: Policy Makers Allocation of funds; Fairness and Equity; Safety Policy Makers; Advocates (?); Researchers (?) Providers Licensing/Compliance; Maintaining and Maximizing Funding; Safety; Outcomes (?) Other Providers; Lawyers and Lobbyists; Advocates (?) Families Ensuring the best life for their family members; Safety Other Families; Advocates (?) People Using Services My own/ best lifeFamily members; Staff

47. Result Frustration! Mistrust Miscommunication Finger-pointing Lost opportunities – What works – What doesn’t 47

48. Solution: Address the Disconnect Diagnose the needs/ goals of provider Identify breaks in linkages/ priorities Develop outcome measures that “bridge” priorities and stakeholder groups – With input of stakeholder groups most affected – Considering tools and resources used by other stakeholder groups and for other priorities – Incorporating as appropriate 48

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51. Solution In Practice Providers working on self-assessments – Ensure that the right things are being measured – Consider/base on NCI/NCI-AD principles – Comparability to national/state data – Evidence for state/funders – Ability to track progress/QI – Ability to communicate with stakeholders 51

52. Extreme Example Small provider agency under heightened scrutiny Motivating factors: – Ensuring compliance – Surviving – Providing the best services – Doing the right thing 52

53. Extreme Example, Cont. Process for developing meaningful outcome measurements “Intended” consequences “Unintended” consequences Lessons learned – Simply measuring outcomes is not enough for change - – But can lead to change, if done right – Importance of communication and trust Intended use of data – Evidence for state – PCP and acting – Internal QI and progress tracking 53

54. Not-So-Extreme Example Very large provider agency Motivating factors: – Providing the best services – Quality assurance and improvement Process for development meaningful outcome measurement- similar – Less stress on HCBS regs Intended use of data – Internal QI and progress tracking – Communicating with stakeholders – Marketing 54

55. Another Example: Managed Care MCOs starting to think about how to measure quality in LTSS Also starting to work (or should be starting) onself- assessments Solution in practice is the same: – Ensure that the right things are being measured – Consider/base on NCI/NCI-AD principles – Comparability to national/state data – Evidence for state/funders – Ability to track progress/QI – Ability to communicate with stakeholders 55

56. MCO Example - UnitedHealthcare Issued a white paper in May 2016 Proposed a framework for measuring quality in MLTSS Framework considers a number of data sources and tools Intend to use the framework to evaluate themselves Will be proposing the framework to states in which doing MLTSS business 56

57. Opportunity knocks, but sometimes it knocks you upside the head and looks a lot like a problem