1. National Core Indicators Project Lynnette Henderson, PhD UCEDD Associate Director of Community Services Vanderbilt Kennedy Center Lynnette.Henderson@vanderbilt.edu Jessie Baird, MEd Candidate

2. WHAT IS NATIONAL CORE INDICATORS (NCI)? Multi-state collaboration of state DD agencies Measures performance of public systems for people with intellectual and developmental disabilities Assesses performance in several areas, including: employment, community inclusion, choice, rights, and health and safety Launched in 1997 in 13 participating states, now used in 39 states NASDDDS – HSRI Collaboration – National Association of State Directors of Developmental Disabilities Services (NASDDDS) – Human Services Research Institute (HSRI).

3. CT NCI State Participation 2013-14 HI WA AZ OK KY AL NC PA MA TX AR GA NM NJ MO NH OH* IL LA NY Wash DC FL CA* SD OR MN UT CO KS MS TN SC WI MI IN VA DE MD State contract awarded in 2013-14 through AIDD funding CA*- Includes 21 Regional Centers OH*- Also includes the Mid-East Ohio Regional Council 39 states, the District of Columbia and 22 sub-state regions ME

4. National Sample Hewitt, A. S., Stancliffe, R. J., Johnson Sirek, A., Hall-Lande, J., Taub, S., Engler, J., Bershadsky, J., Fortune, J., & Moseley, C. (2011). Characteristics of adults with autism spectrum disorder who use adult developmental disability services: Results from 25 US states. Research in Autism Spectrum Disorders, 6(2), 741-751. Data from 2006––2008 from 25 states AL, AR, AZ, CT, DE, GA, HI, IN*, KY, LA, MO*, NC, NJ, NM, NY*, OK, PA*, RI, SC*, TX, VT, WV, and WY. CA (Orange County only), and WA – 12,382 people served by their states – (55.6%)men and (44.4%) women, – average age of 42.7 years (range 18–100). – 1002 individuals with an ASD diagnosis (8.1%). – percentage of members with ASD ranged from 3.7% to 27.4%. – TN 2013-2014 sample was at 11.9%

6. Age distribution of the 2013-2014 NCI Sample N436 Mean46.26 Minimum20 Maximum84 Percentiles2534.00 5047.00 7558.00

7. Nationally and in TN, Adults with ASD are younger than the larger NCI group. F(1)=46.5, p=.000 m=48.1 m=34.30

8. Gender distribution of the 2013-2014 NCI Sample GENDER FrequencyPercent Male 26560.8 Female 17139.2 60.8%39.2%

9. Substantial overrepresentation of males with an ASD diagnosis in National and TN samples 226 158 39 13 χ 2 (2) = 5.008, N = 436, p =.025

10. Level of Intellectual Disability within the 2013-2014 NCI Sample: 267 63.3% 109 25.8% 46 10.9%

11. Intellectual Disability National Studies found there was an interesting bi-modal distribution of autism/ASD diagnosis by level of intellectual disability with higher proportions for people with no ID diagnosis or severe/profound ID. TN data did not support this finding, since only those with ID are eligible to receive DIDD services in TN Mild-moderate Severe-Profound Unknown χ 2 (2) = 190, N = 436, p =.387

12. Requirement: Is integrated in and supports access to the greater community Success # 1: Most Housing is HCBS Compliant

13. Behavioral Challenges limit home choice for people with ASD in TN β = -.887, t(433) = 2.42, p <.000

14. Requirement: Is integrated in and supports access to the greater community Opportunity #1 and Opportunity #2 for more integration.

15. Requirement: Provides opportunities to seek employment and work in competitive integrated settings, engage in community life, and control personal resources Success #4 / Opportunity #1: Time and Money

16. People with ASD are less likely to have a paid job in the community 241 57 59 18 4 26 χ 2 (2) = 36.16, N = 405, p =.000

17. Requirement: Ensures right to privacy, dignity and respect and freedom from coercion and restraint Success #1: People feel good about their privacy.

18. Relationships with Staff are different for people with ASD 9 262 11 70 21 27 χ 2 (3) = 27.73, N = 403, p =.000 AND complicated by communication difficulties β =.104, t(433) = 1.110, p =.000

19. People with ASD have report lower Relationship Scores than others. F(1)=5.06, p=.025 188 64 33 70 15 5 2 26 χ 2 (3) = 27.73, N = 403, p =.000

20. Requirement: Ensures right to privacy, dignity and respect and freedom from coercion and restraint Opportunity #2: 22% can’t express whether they feel fear.

21. C. New HCBS Person-Centered Service Plan Process Requirements Requirement: Service planning process is driven by the individual Success #1: People get the services they need.

22. People with ASD are less satisfied with their services than others in the sample. F(1)=14.63, p=.000

23. Requirement: Facilitates choice of services and who provides them Opportunity #1: Service coordinators are not viewed as partners.

24. People with ASD are less satisfied with their ISC and service planning than others in the sample. F(1)=40.18, p=.000

25. Areas of Concern Associated with Regional Findings

26. Areas of Concern Associated with Level of Demonstrated Communication

27. Areas of Concern Associated with Conservator Status

28. People with ASD in TN with are more likely to have a conservator, perhaps due to communication issues β =.594, t(433) = 1.81, p <.000

29. People with ASD receiving services in TN have fewer choices F(1)=7.413, p=.007 β =.049, t(433) = 1.05, p =.050

30. Communication Differences found in the National and TN Sample χ 2 (1) = 26.442, N = 385, p =.000 283 59 21 22 293 69 6 10 5 28 22 1 1 χ 2 (4) = 16.90, N = 435, p =.002

31. Communication Differences found in the National and TN Sample χ 2 (4) = 35.496, N = 402, p =.000 271 12 59 8 4 17 4 22 3 2

32. Co-morbidities In the Tennessee sample, persons with ASD were: – MORE likely to have a psychiatric diagnosis – χ 2 (5) = 13.886, N = 436, p =.016 – MORE likely to have a anxiety disorder diagnosis – χ 2 (1) = 3.715, N = 436, p =.041 – More likely to have noted behavioral challenges – χ 2 (1) = 10.918, N = 436, p =.001 In the national sample persons with ASD were: – more likely to have a communication disorder, – less likely to have a psychiatric diagnosis, – less likely to have a vision problem, – less likely to have a physical disability, – less likely to have a hearing impairment, – less likely to have Down Syndrome, and – their was no relationship between ASD and seizure disorder

33. Recommendations for using NCI Data for Quality Improvement Generate State-Specific Charts on the Website Use the Data from this Report Create Groups to Review the Data Identify Areas for Improvement Develop Change Strategies Develop Benchmarks Share the Data in an Accessible Format http://vkc.mc.vanderbilt.edu/vkc/nci/

34. “The Elephant in the Room” DIDD was created in 2009, but its predecessor, DMHDD, was established in 2000 after a title 33 revision In 2014, individuals with developmental disabilities like ASD without co-occurring intellectual disabilities are not being served by the department – Exception: Family Support program Waiting list for individuals with intellectual disabilities exceeds 7000; this is an underestimate of the need.

35. Waiver Programs for People with ASD The majority of states in the U.S. operate HCBS Section 1915(c) Medicaid waiver programs with related conditions or related disability clauses (Hall-Lande et al., 2011). These policies allow individuals with ASD to be eligible for HCBS that are available to people with DD or ID. Yet, at the time of the study only two states have implemented specific waiver programs for adults with ASD (IN and PA). “In the absence of specific eligibility criteria that do not require a diagnosis of ID, it is unlikely that people with Asperger disorder or high functioning autism will be served in the developmental disabilities system.”

36. Medicaid Waiver Background Medicaid may vary eligibility from one state to another, so too may states’ eligibility for HCBS waiver program ser­vices and services funded by local state dollars. Medicaid eligibility require­ments may be two-part: – income and other provisions such as the Tax Equity and Fiscal Responsibility Act of 1982. – Needs institutional level of care criteria/ needs “active treatment.” “Clearly there is a need for IDD services nationally to be prepared to serve individuals with ASD, including those without ID. It is worth asking the question whether or not individuals with ASD, particularly those who have ASD but not ID, are appropriately served in traditional services for people with IDD or if there is a better option.”

37. New Waiver Proposals TennCare and DIDD have developed new waiver proposals in an effort to meet the needs of the DD population, including those with ASD.developed new waiver proposals Changes to three existing waivers Statewide Waiver, Comprehensive, Aggregate Cap Waiver, and Self-Determination Waiver have been approved. They will be capped and services will be provided through managed care.Statewide Waiver Comprehensive, Aggregate Cap WaiverSelf-Determination Waiver TennCare and the Department of Intellectual & Developmental Disabilities (DIDD) have released a Concept Paper about the future of the state's Home and Community Based Services for people with intellectual and developmental disabilities.Concept Paper – For a summary of key points for people currently receiving waiver services, click here.click here – For a summary of key points for people waiting for services, click here.click here – To view the Consumer/Family presentation, click here.click here – To view the Provider/Advocate presentation, click here.click here

38. The TN Autism Plan - Structure While the plan is certainly “autism specific”, another key goal in designing the final report was to make sure that as much as possible, both the specific recommendations for action and the vision for new initiatives would dovetail as seamlessly as possible with existing disability community directions and values.

39. Policy Considerations Historically, ASD has been a very expensive disability to accommodate and states have been challenged to develop comprehensive, well-coordinated systems to sup­port individuals with ASD. Furthermore, part of the challenge and expense may be that services are not always well-matched to the particular needs of the current popula­tion of individuals with ASD. They may be using more costly services such as mental health services, emergency rooms, crisis placements or correctional facilities. Policy researchers may discover that less-costly community services addressing the long-term needs of people with higher functioning ASD could actually lower overall state costs.