1. Home and Community- Based Services: Creating Systems for Success at Home, at Work and in the Community A REPORT FOR THE NATIONAL COUNCIL ON DISABILITY (NCD) PREPARED BY NASDDDS

2. Purpose of report  To provide evidence of the impact of size and types of community settings on outcomes of people with intellectual disabilities  Based on review of 45 peer-reviewed research studies, meta-analyses, policy reports, and other documents

3. A right, not a privilege  “The opportunity to have a regular life in the community is not a privilege, but a right.  New HCBS rule: “A community-based setting is integrated with the surrounding community and provides people in the setting with the same degree of access to the community as people not receiving HCBS. This…must include opportunities for each participant to work in competitive integrated employment, engage in community life, control personal resources, and receive services in the community.”  ADA, Olmstead, DOJ  DOJ: “Olmstead makes clear that the aim of the integration mandate is to eliminate unnecessary institutionalization and enable individuals with disabilities to participate in all aspects of community life.”

4. National trends  Average setting size:  1977 22.5 people  2002 3.1 people  2013 2.2 people  State to state variability: in 2013, five states supported more than 80% of residential service recipients in settings of 3 or fewer (KY, NH, NM, VT, CO); seven states supported less than 30% of people in settings of 3 or fewer (IL, MS, MT, NJ, KS, SC, VA). New York was just above this, at 31%.

5. New York trends  2000 2013  Own home 1,514 9,481  Family 63,343 81,178  1-3 3,020 3,366  4-6 5,855 11,784  7-15 18,238 18,533  16+ (state) 2,411 437

6. Summary of findings  “People with IDD who lived in a home of their own, with their families, in shared living situations, or in provider supported alternatives with one or two roommates consistently scored higher in terms of individual outcome achievement than did people living in moderate (4-6 individuals) and large (15 or more) residential programs and facilities.

7. Residence size  Several studies examined outcomes of: choice, preventative health care, obesity, loneliness, wellbeing and satisfaction, and expenditures  Across seven settings: own home, family home, host family, agency 1-3, agency 4-6, agency 7-15, and agency 16+  On measures of choice, control, privacy, loneliness, expenditures, satisfaction – outcomes were better for people living on their own, with families, or in small agency settings  Only exception, for preventative health care and overweight/obesity, outcomes were better in agency operated or supervised settings

8. Adaptive behavior  Stancliffe and colleagues have consistently documented better adaptive behavior outcomes associated with smaller settings  In summary: Individuals with shorter periods of institutionalization, who lived in smaller community settings, and experienced larger increases in community participation had higher adaptive behavior scores.

9. Satisfaction, wellbeing, and loneliness  More loneliness in settings of 8-15 than in smaller settings.  Greater satisfaction and sense of wellbeing among residents of smaller settings.  In summary: “Self-reported wellbeing and satisfaction findings document the benefits of residential support provided in very small settings and with choice of where and with whom to live.”

10. Health care  Stancliffe et al., focused on overweight and obesity, based on NCI data  Foster homes and group homes had significantly lower rate than agency apartments, own homes, and family homes.

11. Choice and self-determination  More choice found in small settings, and in HCBS settings vs. ICFs  “Strong and significant” relationship between choice of where to live and with whom and level of ID  Overall, Lakin et al.: “…many people across all settings still have very little choice…While a higher proportion of people reported having input into everyday decision, many respondents reported that they did not have input in major life decision.”

12. Service setting costs  Generally, higher costs in congregate settings  Congregate settings have higher staffing and resources for operation, specialist expertise, and the like; however, these high expenditures do not appear to translate into improved outcomes (e.g., studies by Stancliffe and colleagues finding higher expenditure in group homes but better outcomes for people in semi- independent living)

13. Level of disability  Individuals with severe/profound ID documented to have significantly lower outcomes.  Severe disability significantly related to larger residential size, as well as more restrictive and traditional living arrangements. Kim and Dymond (2012): “…the full spectrum of supported living services is not available for people with severe disabilities.”  Strong relationship between level of disability and choice of where and with whom to live.

14. State variation  Some studies reveal significant differences in outcomes by state  Size of setting variation  Significant differences in choice by state

15. In summary  “People with IDD who lived in a home of their own, with their families, in shared living situations, or in provider supported alternatives with one or two roommates consistently scored higher in terms of individual outcome achievement than did people live in moderate (4-6 individuals) and large (15 or more) residential programs and facilities (with some variability on specific outcomes).

16. Moving forward: Issues  Improvements in health care in own homes, family homes, etc.  Further documentation of factors that play a role in state variation  Critical attention to opportunities for small settings, choice and control, for people with severe disabilities  Further learning and documentation about what features of smaller settings promote better outcomes

17. Moving Forward: Recommendations – Federal, State, and Agency Levels  Listen to and work in partnership with self-advocates.  “We should live in apartments, houses, condominiums, trailers…located in rural, urban, or suburban communities. We must have a right to privacy. We must have rights of freedom of mobility, choice, and association.” (Keeping the Promise)

18. Moving Forward: Recommendations – Federal, State, and Agency Levels  Federal  - Full implementation of HCBS rule – with enforcement, guidance to states, identification of promising practices, etc.  States:  Prohibit clustered or campus-style housing  - Revise and restructure funding and support policies - to limit size of residential settings – and to promote the development of individual and relationship-based supports; work with local agencies to facilitate the development of individual and relationship-based supports  Learn from states that have moved in this direction  Promote learning between local agencies

19. Moving forward: Recommendations – Federal, State, and Agency levels  Agencies  - Align organizational culture, structures, policies, and funding toward the development of individual and relationship-based service alternatives  - Learn from examples of other agencies who are moving in this direction – mentoring, communities of practice, etc.

20. Resources  HCBS report: https://www.ncd.gov/publications/2015/02242015https://www.ncd.gov/publications/2015/02242015  MN policy brief: http://rtc.umn.edu/prb/242/http://rtc.umn.edu/prb/242/  Guidance document: https://www.medicaid.gov/medicaid-chip- program-information/by-topics/long-term-services-and-supports/home- and-community-based-services/downloads/settings-that-isolate.pdfhttps://www.medicaid.gov/medicaid-chip- program-information/by-topics/long-term-services-and-supports/home- and-community-based-services/downloads/settings-that-isolate.pdf  HCBS advocacy: https://hcbsadvocacy.org/https://hcbsadvocacy.org/  Q & A: http://www.aucd.org/docs/policy/HCBS/HCBS%20Regulations%20Q&A %20Heightened%20Scrutiny%20Final%201%2022%202016.pdf http://www.aucd.org/docs/policy/HCBS/HCBS%20Regulations%20Q&A %20Heightened%20Scrutiny%20Final%201%2022%202016.pdf  RISP powerpoint: https://risp.umn.edu/https://risp.umn.edu/  Keeping the Promise: http://www.acl.gov/programs/aidd/Program_Resource_Search/docs/k eepingthepromiseofcommunity_sabe.pdf http://www.acl.gov/programs/aidd/Program_Resource_Search/docs/k eepingthepromiseofcommunity_sabe.pdf