Changing Venues: Trends in Long-Term Supports and Services for People with IDD NARRTC 36 th Annual Meeting Alexandria, VA April 24 2014 Preparation of this presentation was supported, in part, by a cooperative agreement from the Administration on Intellectual and Developmental Disabilities, Administration for Children and Families, U.S. Department of Health and Human Services and a grant (#H133B080005) from the National Institute on Disability and Rehabilitation Research (NIDRR). Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore necessarily represent official AIDD or NIDRR policy.
National Goals: Community Life People with IDD will live in and participate fully in their communities. People will choose the supports they need and want and exercise control in the selection of how those supports are provided. People will have access to stable, skilled support providers when and to the extent needed. People will have satisfying lives and valued social roles. People will be safe, have the assistance they need to manage life s risks and be free from the exploitation of others. http://www.thearc.org/researchreport
Residential Information Systems Project (RISP) Collaborating with state and territory DD agencies to identify and collect data regarding residential services and services provided in individual and family homes. Collecting and compiling annual data from states and territories. Interpreting and translating the data into actionable information to assist policy makers and others to make informed decisions over policy and practice. Disseminate findings to territory, state and federal policy makers, self-advocate and family advocacy groups, national organizations and all others interested in residential services and supports to families.
People with IDD in Large Public Facilities 250,000 Average Daily Population 200,000 150,000 100,000 IDD Psychiatric 50,000 0 1950 1955 1960 1965 1970 1975 1980 1985 1990 1995 2000 2005 2010 2011 2012 Year
Who is Being Admitted to Large Facilities? 7,000 6,000 5,000 4,000 3,000 2,000 1,000 0 1989 2000 2012 1989 2000 2012 Admissions Discharges Mild + None Moderate Severe Profound Previous Place of Residence for People Admitted to PRFs for the First time 47% 6% 52% 39% 9% 59% 59% 26% 26% 26% 15% 15% 57% 18% 47% 30% 23% 67% 20% 50% 37% 12% 13% 1985 1989 1994 1998 2002 2008 2010 2012 Family, Foster or Own Home Group Facility 1 to 15 Group Facility 16+
PRF Characteristics (Estimated US Total People 26,503 on June 30, 2012) Age of PRF Residents 1977 to 2012 60.9 61.9 59.0 54.1 48.9 41.3 38.1 35.8 27.3 22.6 19.2 18.8 18.8 16.5 15.1 12.7 11.9 8.2 6.0 3.7 4.8 4.6 4.2 3.6 1977 1987 1998 2008 2010 2012 0-21 Years 22-39 Years 40-62 Years 63+ Years Involved with criminal Justice System (1,247; 4.7%) Court ordered for competency (144, 0.5%) Incompetent to stand trial (1,338; 5.0%) Under parole supervision (100, 0.3%) Otherwise in criminal justice system (446; 1.2%)
Services Offered By Public Facilities to Non-Resident People with IDD Top Services offered to non-residents (% offering) Behavioral assessment and intervention (33%) Dental services (32%) Crisis support services (25%) Respite (23%) Vocational training (21%) Short-term stays for Respite (823; 3.1%) Evaluation (617; 2.3%) Crisis housing (26; 0.1%)
Average Annual Institution Closures 1960 to 2014 10.8 Number of Facilities/Units Closed 3.6 6.0 8.2 4.2 3.0 6.6 0.2-1.2 1.0 60-64 65-69 70-74 75-79 80-84 85-89 90-94 95-99 00-04 05-09 10-14 Years
ICF-IDD Utilization1977 to 2012 160,000 140,000 120,000 100,000 Nonstate 1-15 State 1-15 Nonstate 16+ State 16+ 80,000 Residents 60,000 40,000 20,000 0 1977 1982 1987 1992 1997 2002 2007 2012 Nonstate 1-15 1,354 8,358 20,654 34,908 43,880 40,748 38,811 36,907 State 1-15 356 1,627 2,874 6,366 1,264 1,013 1,091 1,131 Nonstate 16+ 11,958 23,686 32,398 33,707 28,181 25,281 20,432 17,549 State 16+ 92,498 107,081 88,424 71,279 Year 54,636 43,530 36,093 26,309
CMS 2014 Rules for HCBS Settings Settings are integrated in and support full access to the greater community Not in a nursing facility, ICF, institution for mental disease, or hospital Not in other settings that have institutional qualities Facilities that provide inpatient treatment On the grounds or immediately adjacent to a public institution; or Effectively isolate individuals receiving HCBS funding from the broader community of individuals not receiving HCBS funded services Selected by the individual from among setting options Ensures right to privacy, dignity and respect and freedom from coercion and restraint Optimizes autonomy and independences in making life choices Facilitates choice of services and who provides them Summary by June Elizabeth Rowe (HSRI) 11
In HCBS Settings Individuals Must Have: A lease or other legally enforceable agreement Privacy in their unit including entrances lockable by the individual (appropriate staff have keys as needed), Choice of roommates Freedom to furnish and decorate their unit Control of their schedule Access to food at any time Visitors at anytime Physical accessibility Summary by June Elizabeth Rowe (HSRI) 12
HCBS Changes in Population Before HCBS Waivers had to target one specific population: People with IDD, People with SPMI, People with Physical Disabilities (includes seniors) Now states can combine these groups into a single 1915(c) HCBS Waiver Implications People with different diagnoses but similar needs to share services and settings Simplifying state Waiver management.
Medicaid LTSS: Children vs Adults 450,000 400,000 403,007 350,000 300,000 Number of people 250,000 200,000 150,000 143,623 115,394 196,934 142,958 100,000 72,038 50,000 0 5,011 14,586 ICF-IDD HCBS Family HCBS Non-Family HCBS Total 22 years + Birth to 21 years
Residence Size and Type 1998 to 2012 1,200,000 1,000,000 People with IDD 800,000 600,000 400,000 200,000-1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 Own Home 62,669 65,006 73,147 80,242 86,694 90,597 107,157 101,143 104,386 115,659 115,873 122,088 127,455 126,998 118,265 Family 325,650 355,192 391,859 451,677 482,479 500,004 503,641 533,048 569,020 576,163 588,594 599,152 592,180 631,436 613,674 1-3 + Host Foster 63,279 65,966 78,680 86,563 90,969 88,778 90,451 84,423 85,563 87,772 87,081 84,935 102,644 101,423 168,453 4 to 6 73,658 80,464 83,156 89,447 86,874 92,550 92,324 107,573 106,821 106,965 111,658 114,653 105,290 119,090 80,445 7 to 15 53,940 52,863 52,818 54,333 54,031 54,325 58,503 52,888 56,572 59,002 53,198 58,235 55,682 57,946 49,705 16+, NH, Psych 114,495 109,213 115,265 112,900 107,829 107,865 102,441 96,920 94,692 89,291 86,294 89,629 89,746 90,533 90,061
Changes in Congregate Settings Nonstate 16+ State 16+ All, 7-15 Residents All, 1-6 Residents RESIDENTS 20,400 20,024 33,188 30,515 69,933 119,675 194,968 264,241 316,291 317,320 154,638 122,750 52,718 57,396 48,637 54,008 53,914 53,757 95,022 58,920 74,538 54,666 49,705 44,066 36,650 26,503 42,081 45,805 38,696 30,676 25,846 22,097 1977 1982 1987 1992 1997 2002 2007 2012 YEAR
Individualized vs Congregate Settings FY 2012 Host Family/ Foster Care, 58,620 Own Home, 126,723 Family Home, 625,652 Congregate Care, 292,275
HCBS Annual Per Person Expenditures by Age and Living Arrangement FY 2012 80,000 70,000 69,715 Annual Per Person Expenditures 60,000 50,000 40,000 30,000 20,000 17,671 55,446 49,466 Family Other 10,000 0 Birth to 21 22 years + Age
Translating Research to Policy Tracking deinstitutionalization and community residential supports and services Nationally State-by-state And now U.S. Territories Used by federal and state policy makers, and advocates to Present national and state trends in LTSS to staff, legislators, advocates, policy makers and other stakeholders (78%) Compare a state s performance to the nation or other states (73%) Prepare reports (71%) Advocate for systems change (70%) Report to AIDD for their annual reports to Congress Enhances ongoing programs of research Provides state level data to help explain variability in outcomes
NCI Factors Associate with Choice Making Tichá, Lakin, Larson et al. (2012) Everyday choice Level of ID (mild +) Walks (+) Age (older +) Problem behavior (none +) Self-report (+) Speaks (+) Living arrangement (own home +) State (2% of variability) Variability explained: 44% Support related choice Level of ID (mild +) Self-report (+) Speaks (+) Living arrangement (own, family home +) State (11% of variability) Variability explained: 31% 19 states, 8,892 participants, OLS regression
Supporting Individuals and Families Information Systems Project (FISP) A changing paradigm From facility-based program models to flexible person-centered, in-home support strategies Most people with IDD have always lived with family but to get supports the had to leave the family home. Now the majority receiving Medicaid funded supports live with family members. States (and stakeholders) need accurate, timely data on the nature and costs of: Instrumental supports received by people with disabilities and their families Emotional supports received by family members Information for families and people with disabilities to build their knowledge and skills 23
Supports for Families Family Caregiver Support Respite Personal Care Supports Habilitation Employment (includes day services Behavior Supports Medical Supports Participant Directed Supports Transportation Environmental Modifications and Technology Category: Family Caregiver support Brief Description: Services provided to help the family provide supports to the person Examples: Home delivered meals, home health aide, homemaker/chore, caregiver counseling, care giver training
FY 2013 Data Collection Operating Entity (State vs Non-state) Type of Setting (Individualized vs Congregate) Age 0-21 vs 22+ Medicaid Funding Authority ICF-IDD, HCBS (7 versions), State Plan Setting Size (1-3, 4-6, 7-15, 16+)
For More Information http:/// www.rtc.umn.edu/risp Build a Report Cross state comparisons Multi-year comparisons 34 report types Soon to be released Revised RISP website New FISP website Sneak Peak www.risp.umn.edu
Contact Information Sheryl Larson, Ph.D. Principal Investigator 612.624.6024 larso072@umn.edu RISP/FISP Research and Training Center on Community Living Institute on Community Integration (UCEDD) University of Minnesota, Twin Cities 214 Pattee Hall, 150 Pillsbury Drive SE Minneapolis, MN 55455 RISP/FISP Team MN: Amy Hewitt, Libby Muchow-Hallis, Lynda Anderson, Sandy Pettingall, Kristin Dean, John Westerman, Jonathan Walz, Shaun HSRI: John Agosta, Faythe, Yoshi NASDDDS: Chas Moseley, Nancy Thayler, Mary Lee Fay