Follow the Money Jim Conroy Center for Outcome Analysis www.eoutcome.org Presentation Purpose Trace trends in money and funding patterns See how and why our funding models influence how services and supports are set up and delivered Explain why these models make it very hard to implement self-determination and related “modern” approaches Recommend things we need to do about it 150 Years of Institutionalization in the U.S. History Family and local responsibility State aid – institutions Medical model/domination Kennedy CMH Act and concern Scandals in institutions (Willowbrook, etc.) Federal aid – Medicaid to institutions 1971 History, 1970s Behaviorism Deinstitutionalization (graph) Public education – PL 94-142, now IDEA Professional model/domination Interdisciplinary – the “Ps” Growth of community provider system History, 1980s and 1990s Medicaid use by states in communities (!) – 1981 the ICF/MR (Small) program (little institutions 4 to 15) – interpretive guidelines – 1981‘Waiver’ program created – Katie Beckett & Reagan – Eventually brought huge $ - but set the framework for decades as a medically-oriented “provider payment system” Employment – supported, competitive, and self (sputtered and sputtering) Person-centered planning – Mount, O’Brien, then others – Truly revolutionary Consolidation and growth of community providers Scandals in communities in the 1990s – CA (mortality), WA, IN, PA, and 10 others Growth of interest in “quality” systems & approaches, but financial stagnation – trying to do better with less So Now We Are Ensnared in Medicaid Was it a good thing? Definitely – no other way to get such increases in $ year after year Are there drawbacks? Definitely – we still struggle with the Medical Model, restricted attention on Health & Safety to the exclusion of a “life” And the Provider Payment nature of Medicaid makes self-determination, self-direction, consumer-direction, and all such shifts of power, VERY difficult. A few examples of courageous actions within Medicaid: Sean Just graduated from high school Terrible car accident, fell into a coma Sean’s state did not have any nursing homes for head injury Professionals sent Sean to another state’s nursing home Sean Lived in a Nursing Home For several years 100 miles from his parents He didn’t get much individual attention And he didn’t improve His care was costing $120,000 per year No one was happy Sean’s Parents Asked: Isn’t there another way? How much is all this costing government? $120,000? Really? If we had control of that money, we would do things very differently. Local Authorities Asked: Oh? What would you do differently? That nursing home is the only one around that specializes in head injury. What could you nonprofessionals do for Sean? Sean’s Parents Said: We would adapt a house for him We would hire his high school friends to work as his attendants We would hire nurses part time to oversee his care And we would have him close to us Local Government Thought This Just Might Make Sense Courageous local leaders went to state and federal officials Explained the situation Asked permission to experiment with putting family in charge of how the money was spent Courageous state and federal officials agreed to “look the other way” while regulations were being “bent” Sean Came Home Government dollars were used to buy a house And to make it accessible And to put in special bathroom and a lift Friends were hired as attendants They took Sean into town on outings Family visited frequently, reading to Sean, talking in his presence, and touching him Outcomes: Total dollars spent, even with the down payment on the new home and the payments on the mortgage, went down below $70,000 (Even in the first year) Much lower now In 1996, Sean began to open his eyes and focus In 1997, he began to speak Most of us think that would not have happened in the nursing home --- EVER New Idea / Theory: When families decide how to spend the public dollars They tend to spend more precisely according to needs And perhaps more wisely than professionals Was This Easy To Do? No! Bringing Sean out of a fully accredited Nursing Home? Into what, is the new facility a certified Medicaid Provider? Buying house? Renovating privately owned home? Hiring non-professionals? Letting Sean’s family and friends decide how to use public funds? Mike Lived in a Group Home With five other men He didn’t like it He had “behaviors” Sometimes extreme He yearned for more family-like situation PCP revealed a sister She wanted more contact, too Following Mike’s Money From state, plus Fed Waiver, residential funds were $50,000 From state, day program funds were $17,000 From state and local sources, transportation added another $3,000 Several other sources made another $2,000 Mike was at a total of about $72,000 Create an Individual Budget And use state of the art individual planning – Person-centered planning – Essential lifestyle planning – Or any variation thereof – (Michigan law requires PCP) Find out what Mike really wants, what kind of life makes sense to him He wanted to be with family more than anything Careful, considerate contact with his sister Take the Same Money, And ... Spend it differently Mike’s twin, Michelle, wanted to support her brother But she had to work to make money and have a home and benefits With Mike’s money, Michelle was “hired” Public dollars were then spent very differently! Mike Eventually Moved In With Michelle and her husband When Michelle went back to school and moved across the state Mike left his job and went with her Found another job Is doing very well No more “behaviors” Total cost MUCH less Was This Easy To Do? No! Leaving the group home? Paying a relative? Not “certified” as a Medicaid provider? Moving counties and keeping same benefits? Extremely difficult to do, and tough to maintain – constant challenges, questions Carl’s Medicaid Cash Cow Wanted to work with animals Farm “internship” Bought Carl’s own calf for $200 with Medicaid dollars He raised it The cow was worth over $800 But two problems arose: 1) Is everybody going to Medicaid jail? 2) Are there Capital Gains on Medicaid profits??? $200 = A LIFE $$$$$$$$$$ MOO-NEY MOO-NEY MOO-NEY MEDICAID CASH COW Post Self-Determination Cash & Counseling experiments in aging, now expanding Self-direction movement in mental health and the recovery model Sweeping changes in Waiver approaches; Independence Plus, Freedom Initiatives, experimental 1115 Waivers Medicaid reform efforts led by ADAPT Advocate to end the “Institutional Bias” in Waivers – Ridiculous structure of Waivers: One has to “need” and be “eligible” for institutional care before being “allowed” to be supported in community Abstract: Providers Must Keep Informed and be Poised to Switch Business Models Cross-group alliance (aging, DD, and MH – and maybe a generic health care SD movement too) Watch for any opportunity to partner with, or merge with, or start a subsidiary on, in-home supports for elders Look at the “Comfort Keepers” model - branding Medicaid changes are urgently needed – National advocacy participation via ANCOR Organized labor roles – and vast changes recently IHSS model – extremely important to study Watch for the “Money Follows the Person” grants! Money Follows the Person Grants Funds Available for the Demonstration The following funds are made available in each respective fiscal year: FY 2007 $250,000,000 – (Available January 1, 2007) FY 2008 $300,000,000 FY 2009 $350,000,000 FY 2010 $400,000,000 FY 2011 $450,000,000 Future Providers and Funding Flow Will we be able to create new accounting systems that will suit the individual budgeting future? Without becoming hopelessly complicated? Looks like a “Yes” Vermont has shifted to individual budgets statewide California always had it that way, sort of without knowing it or realizing it’s unusual, via the Lanterman Act Companies and providers are now springing up all over the states that want to do business in the “new way” It’s worth remembering that self-determination began, not with advocates, self-advocates, or bureaucrats, but with providers who wanted to stop overly dominating the people they supported. Summary Improvements in America’s developmental disabilities support systems are inextricably intertwined with Medicaid (Also called Medical Assistance, from Title XIX of the Social Security Act) To understand why it’s so hard to move forward with self-determination and related models, it’s essential to understand Medicaid and Waivers and how state rules and regulations were shaped by the constant struggle for FFP – getting Federal $$$. Summary So, it’s important to learn about Medicaid HCBS Waivers, which is easy on the Net Once understood to some degree, the next step is to review the latest Waiver models – “Independence Plus” Find out what’s going on in Oregon Figure out how to be part of these efforts The End, Thank You Comments? Questions?