Follow the Money

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Follow the Money

• Jim Conroy
• Center for Outcome Analysis
• www.eoutcome.org

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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

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150 Years of Institutionalization in the U.S.
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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

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History, 1970s

• Behaviorism
• Deinstitutionalization (graph)
• Public education PL 94-142, now IDEA
• Professional model/domination Interdisciplinary
  the Ps
• Growth of community provider system

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History, 1980s and 1990s

• Medicaid use by states in communities (!)
• 1981 the ICF/MR (Small) program (little
  institutions 4 to 15) interpretive guidelines
• 1981Waiver 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, OBrien, 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

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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

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Sean

• Just graduated from high school
• Terrible car accident, fell into a coma
• Seans state did not have any nursing homes for
  head injury
• Professionals sent Sean to another states
  nursing home

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Sean Lived in a Nursing Home

• For several years
• 100 miles from his parents
• He didnt get much individual attention
• And he didnt improve
• His care was costing 120,000 per year
• No one was happy

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Seans Parents Asked

• Isnt 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.

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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 non-professionals do for Sean?

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Seans 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

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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

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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

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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

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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

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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 Seans family and friends decide how to
  use public funds?

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Mike Lived in a Group Home

• With five other men
• He didnt like it
• He had behaviors
• Sometimes extreme
• He yearned for more family-like situation
• PCP revealed a sister
• She wanted more contact, too

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Following Mikes 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

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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

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Take the Same Money, And ...

• Spend it differently
• Mikes twin, Michelle, wanted to support her
  brother
• But she had to work to make money and have a home
  and benefits
• With Mikes money, Michelle was hired
• Public dollars were then spent very differently!

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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

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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

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Carls Medicaid Cash Cow

• Wanted to work with animals
• Farm internship
• Bought Carls 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???

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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

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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!

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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

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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 its 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
• Its 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.

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Summary

• Improvements in Americas developmental
  disabilities support systems are inextricably
  intertwined with Medicaid
• (Also called Medical Assistance, from Title XIX
  of the Social Security Act)
• To understand why its so hard to move forward
  with self-determination and related models, its
  essential to understand Medicaid and Waivers and
  how state rules and regulations were shaped by
  the constant struggle for FFP getting Federal
  .

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Summary

• So, its 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 whats going on in Oregon
• Figure out how to be part of these efforts

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The End, Thank You

• Comments?
• Questions?