Quality Tracking Activities Conducted by the President of

Report
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 (!)
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– 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
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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
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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?

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