Growth and Prevalence of Participant Direction: Findings from the National Survey of Publically Funded Participant-Directed Services Programs Mark Sciegaj PhD Mark Sciegaj, PhD Associate Professor of Health Policy and Administration Pennsylvania State University Pe sy va a State U ve s ty
Overview NRCPDS database project Changes in federal policy, law, and regulations Ch i f d l li l d l i Impact of these changes on Participant-Directed (PD) Long Term Services and Supports (LTSS) program Long-Term Services and Supports (LTSS) program growth State of PD LTSS in 2010-11 State of PD LTSS in 2010 11 Program characteristics Funding mechanisms Funding mechanisms PD Models The future is now The future is now 2
Creating a National Data Base of Publically Funded Participant-Directed Services Programs Funded Participant Directed Services Programs Data Fields Program Characteristics Year Start Population Served Program Size Program Costs Funding Mechanism Medicaid State Plan Medicaid Waiver State Revenue Only Other Financial Management Services Model of FMS Cost of FMS Cost of FMS Selection Process Availability State-Wide or PSA(s) Model Employer/Budget Authority Services/Supports / Information and Assistance Worker Registries Representatives Level of Participant Involvement p Involvement procedures and intensity p y 3
Watershed Moment: Cash & Counseling Demonstration and Evaluation
10 Years of Changes in Federal Law, Regulation, and Policy 2001 New Freedom Initiative 2005 Deficit Reduction Act 2010 Affordable Care Act 2010 Affordable Care Act 2006 Reauthorization of Older Americans Act 2007 Aging and Disability Resource Center Program 2007 Aging and Disability Resource Center Program 2010 Affordable Care Act 2008 Veterans-Directed Home and Community -Based Services Program 5
The 2000s: Decade of Significant Growth 120 New Program Growth 100 2000 2000 2001 80 2002 2003 2003 60 2004 2005 PD LTSS PD LTSS P Programs 2006 40 2007 2008 20 2009 2010 0 1970s 1980s 1990s 2000s 1970s 1980s 1990s 2000s 0 0 5 5 10 10 15 15 6
Majority of States have more than one PD LTSS Program AK WA ME MT ND VT MN OR OR NH NY NY WI MA ID SD MI RI WY Hawaii CT PA IA NE NJ NV IN OH IL IL DE WV VA CO CA KS MO MD KY DC NC TN OK AR SC AZ NM NM AL GA MS LA TX States with 1-2 PD Programs FL States with 3-5 PD Programs States with 6-10 PD Programs States with 10+ PD Programs States with 10+ PD Programs 7
Program Populations (n=154) Elders 20% (n=30) ( ) Adults with physical disability 11% (n=17) Elders and adults with physical disability Elders and adults with physical disability 35% (n=54) Adults with ID, MH, HIV/AIDS, etc 13% (n=20) Children 9% (n=14) ( ) All ages 12% (n=19) 8
Program Size (n=233) Total enrollment: Approximately 747,000 California accounts for 65% of enrollments C lif i t f 65% f ll t Average program size (n=232) approximately 1100 enrollments r ll t Majority (53%) of programs have 500 or fewer participant participant Approximate program costs (2010-11): 7.7 Billion dollars dollars California accounts for 56% 9
Majority of States have 1000 – 5000 PD LTSS Participants AK WA ME MT ND VT MN OR OR NH NY NY WI MA ID SD MI RI WY Hawaii CT PA IA NE NJ NV IN OH IL IL DE WV VA CO CA KS MO MD KY DC NC TN OK AR SC AZ NM NM AL GA MS LA TX FL States with less than 1 000 PD participants States with less than 1,000 PD participants States with 1,000 but less than 5, 000 PD participants States with 5,000 but less than 10, 000 PD participants States with more than 10, 000 PD participants 10
PD-LTSS Funding Sources Medicaid is the major funding source (n=237) 77% Medicaid Waiver / State Plan 11% State Revenues 7% VA 3% Other (Tobacco funds, gaming revenue) CMS recognizes two basic models of PD-LTSS Employer Authority Budget Authority 11
States with Employer Authority Programs AK WA ME MT ND VT MN OR NH NY WI MA ID SD MI RI WY Hawaii CT PA PA IA IA NE NJ NV IN OH IL DE WV VA CO CA KS MO MD KY DC NC TN OK AR SC AZ NM AL GA MS LA TX TX Employer Authority FL 12
Employer Authority Characteristics Employer of Record (n=177) Participant 72% (n=126) Participant 72% (n=126) Agency 28% (n=51) Who sets rate of pay (n=185) Who sets rate of pay (n=185) Participant 47% (n=87) Program 39% (n=72) Program 39% (n=72) Other 14% (n=26) Designated pay range Designated pay range General assembly or other entity 13
Employer Authority Characteristics Are there restrictions on who the participant may hire? (n=182): hire? (n 182): 90% (n=165): Yes Spouse p Legal guardian Pass criminal background check Criminal background check required (n=185): 84% (n=155): Yes Does the state have a worker registry? (n=159): 20% (n=33): Yes; 77% (n=122): No 14
States with Budget Authority Programs AK WA ME MT ND VT MN OR NH NH NY WI MA ID SD MI RI WY Hawaii CT PA IA NE NJ NV NV IN OH IL DE WV VA CO CA KS MO MD KY DC NC TN OK AR SC AZ NM GA AL MS LA TX FL FL 15 Cash & Counseling States 19 Additional States with Budget Authority Programs 15
Budget Authority Characteristics (N=77) The size of the budget is determined by a professional needs assessment and a formula p that converts the assessment into a monthly budget allocation g Varied Purchasing restrictions g Cannot exceed approved budget Categorical restrictions g Can carry forward funds into new fiscal year 82% (n=62): No 82% (n 62): No 16
States with VD-HCBS Programs AK WA ME MT ND VT MN OR NH NY WI MA ID SD MI RI WY Hawaii CT PA IA NE NJ NV IN OH IL DE DE WV WV VA VA CO CA KS MD MO KY DC NC TN OK AR SC AZ NM AL AL GA GA MS LA TX FL States currently enrolling Veterans (1/19/11) States developing Provider Agreements States in the early stages of VD HCBS development States in the early stages of VD-HCBS development 17
Components of VD-HCBS Individual Budget g Person-Centered Planning Spending Plan including Goods and Services Spending Plan including Goods and Services Systems of support: Veteran-Directed counselor V Di d l Financial Management Services (FMS) 18
Individual Budget Several methods to determine amount For VD-HCBS VACO provides range For VD HCBS, VACO provides range VAMC/Aging Network Agency work out method to determine individual amount AN recommends VAMC recommends Established case mix tiers Exceptions to range approved by VACO In general budget amount should approximate what I l b d h ld i h would be authorized for needed services by an agency n 19
Level of Participant Involvement (n=160) Participant involvement in program design Participant involvement in program design, implementation, and evaluation 86% (n=139): Yes 86% (n 139): Yes 86% (n=120): Persons with disability 67% (n=93): Persons with Intellectual Disability 65% (n=90): Persons with brain injury 79% (n=110): Elders 90% (n=125): Caregivers 90% (n=125): Caregivers 20
Methods for Participant Involvement (n=139) Individual Interview: 61% (n=85) Individual Interview: 61% (n 85) Surveys: 73% (n=101) F Focus Groups: 56% (n=72) Gr p 56% (n=72) Advisory Board: 78% (n=108) 21
Summary By the end of 2011 there are over 240 PD-LTSS programs Majority being developed and implemented since 2000 Every state has one employer authority program offering the participant the opportunity to select and hire their own participant the opportunity to select and hire their own worker 43 states also have at least one program where the participant has control over their service budget h l h i i b d NRCPDS will continue to collect program information and to analyze this information to learn about and to analyze this information to learn about differences in PD program structure, financing, and operations across the states. 22
The Future is Now Participant Direction is increasingly becoming a standard program offering to individuals in publically standard program offering to individuals in publically funded long-term services and support programs Patient Protection and Affordable Care Act Patient Protection and Affordable Care Act 2401: Community First Choice Option 2402a: Common Framework Supporting PD w pp g 2403: Money follows the person 2405: ADRC expansion p Title VIII: CLASS ACT AoA LTSS workforce development initiative p 23
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