Transcript Working Toward Sustainable Futures

In support of people with developmental
disabilities ….
Working Toward A
Sustainable Future
Orange County Regional Center
January 31 2004
Why we
are here …
To reach a common understanding of
where we’ve been, where we are
today, and what the future
potentially holds
 To explore answers to the critical
question: How do we work toward a
sustainable future for this
organization and for people with
developmental disabilities?

Where we’ve been …

1950s and 1960s – Expansion of
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1970s – Institutional reform – ICF/MR
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1980s – Supports paradigm emerges
public institutions – Segregation – Low
expectations – Few community services
program created – Deinstitutionalization
– Enactment of IDEA – Community
services take root
– Family support gains momentum –
HCBS waiver program created –
Integrated employment – IDEA Part C –
Community expansion
Where we’ve
been …

1990s – Institutional closings
quicken – Accelerated growth
in spending for community
services – Community reform
(individual/ family-directed
services, rejection of old
models) – HCBS waiver
program becomes dominant
funding stream – Selfadvocates and families assert
their political voice –
Olmstead decision
Report card …
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In 2000, nationwide spending for
developmental disabilities services reached
$29 billion
Between 1996 and 2000 spending for
community services grew 18%
In 2001, about 835,000 people received
residential or other services
In 2001, total state-federal Medicaid
spending for ICF/MR and HCB waiver
services climbs to $21 billion; HCBS waiver
spending overtakes ICF/MR spending
Sources: Braddock; Lakin
Report card …
In 2001, Medicaid dollars
supported about 442,000
individuals, including
328,000 HCBS waiver
participants
 Medicaid dollars
supported more than
twice as many people as
in 1990
 In 2001, the number of
people served in public
institutions dropped to
46,000

People with Developmental Disabilities
Receiving Medicaid LTS
500,000
450,000
400,000
350,000
300,000
250,000
200,000
150,000
100,000
50,000
0
90
93
96
99
01
HCBS
45,220
101,725
194,799
261,021
327,713
ICF/MR
144,288
147,729
129,449
117,917
113,907
Source: Lakin
Achievements ….
Community-centered systems that offer more
diverse and flexible services and supports
 Steady progress toward embracing the
principles of person-centered supports
 Massive infusion of dollars into the community
 Heightened expectations: People and
families now expect that public systems will
provide them the help they need to live and
participate in the community

The context …
During most of the 1990s,
state budgets were
extraordinarily healthy
 States leveraged massive
amounts of federal Medicaid
dollars via the HCBS waiver
program – costs of community
expansion to states were low
 Federal policy encouraged
states to expand community
services
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The train wreck …
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Economy falters; stock market
tumbles
State revenues nose dive
Medicaid spending accelerates
– Faltering economy causes number
of Medicaid recipients to rise
– Health care cost inflation
accelerates
– Medicaid expansions catch up with
states

Result: “The Perfect Storm” – State
budgets in worse shape in 50+
years
States react …
Budget problems emerge in 2001
 2002: States draw down surpluses, juggle the
books, tap other dollars, freeze hiring, begin
pruning Medicaid programs
 2003: Revenues continue to slide; states make
increasingly painful cutbacks, including Medicaid
reductions
 Questions: When do revenues stop sliding,
stabilize and then start growing again???

Forecast …
State budgets will recover but not soon
 It’s the economy, stupid!
 Once their budgets begin to recover,
states will –

– Be more circumspect about making new
commitments
– Seek to build up cash reserves
Meantime – The Feds
Federal budget: squeeze on
non-defense domestic
spending
 Surplus  Deficit
 Medicaid reform?
 Prognosis: Limited federal aid
to help states address their
budget problems
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Impact on our world
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Freezes on HCBS waiver enrollment
Rate cuts/stagnation
Institutional closures without recycling savings
Medicaid beneficiaries with developmental
disabilities caught up in state eligibility cuts and
trimming optional services
Refinancing instead of leveraging
Stagnation – Growth curve flattens
Our situation
Developmental disabilities budgets
are captive to the health of the
state budget
 In most states, opportunities to
maximize federal Medicaid dollars
are nearly exhausted
 Institutional “piggy banks” have
been emptied
 Diminished ability to self-finance
system growth
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Compounding stressors
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Accelerating service demand
Workforce
Quality problems
Fragmentation
Antiquated technologies
Increasing diversity
Demand drivers …
Aging caregivers
 Increased life
expectancy
 Incidence (e.g., autism)
 Population growth
 Heightened
expectations

Aging & Developmental
Disabilities...
Total Estimated Population of People with a
Developmental Disability Living with Family
Caregivers (1.89 Million)
Age 60+
25%
Age 41-59
479,882
35%
663,022
40%
Age <41
746,184
0
Source: Braddock, 1999
200,000
400,000
600,000
800,000
Workforce
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Workforce crisis emerged in
the late 1990s
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Shrinking pool of workers
being chased by long-term
care and other industries

Inadequate wages and
benefits  High turnover –
instability – low adherence

Increasingly diverse
workforce
Impacts
Labor supply trends point in the
wrong direction
 Absent solving the workforce
problem, it will be hard to increase
system capacity
 There is no solution to the
workforce problem that does not
include higher wages for DSPs
 Workforce problem has enormous
consequences for service quality

Quality problems
Substitution of “getting by” supports for
services that help people grow and
meaningfully participate in their communities
 Community growth outpaced the system’s
capacity to provide high quality services and
state ability to effectively manage quality
 Workforce turnover has caused quality to
erode
 Concurrently federal expectations concerning
quality management and improvement are
rising
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Antiquated technologies
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Services = Paid workers
Slow uptake/development of
new technologies
Inadequate data systems and
application of computer
technologies
Clumsy rate/payment systems
that breed/reward inefficiency
Absence of evidence-based
practices
Heading for a crash!
Weighty Legacy
Services & Structures
Rising
Demand
Workforce
Shortages
Fragmentation
Quality
Problems
Antiquated
Technologies
Budget
Shortfalls
Tough Love!
Systems had serious problems before state
budgets crashed
 As long as the pie was growing, systems could
“afford” to work around their problems
 Funding growth will be slower than in the past
and insufficient to buy our way out of problems
 In the present climate and for the foreseeable
future, not addressing the problems will make a
bad situation worse
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What To Do???
We can’t stay on
this spot
We need to rethink what
we do – affirm our
values but resolutely
search for “value”
Sustainable future requires …
An action agenda anchored in values
and committed to making the
changes necessary to secure the
best outcomes possible for people
with developmental disabilities and
families going forward
The agenda must recognize …
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For the foreseeable future, public funding will
grow slowly
Making dollars work harder and smarter is
critical
Can’t afford “business as usual”
If we don’t define the agenda, others will
Need for fundamental change
Change includes building on strengths and
pursuing new pathways
The significant problems
we face can not be solved
at the same level of
thinking we were at when
we created them.
Albert Einstein
Our thinking must change …
Old framework – Buy our way out of
problems
 New framework:
Value = Quality/Cost
 How do we amplify the value of the
resources we have?
 What’s the most efficient/effective
pathway?
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The values foundation …
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We have learned …
– Individual/family direction works
– Effective person-centered planning works
– Integration and inclusion amplify resources
– Supporting people to make contributions
amplifies resources
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Action pathway – Resolute pursuit of
principles of person-centered supports
“And lastly, and for all eternity, French,
blue cheese or ranch?”
Efficiency
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Reform: person-centered system architecture
New business models
Open markets
“Non-traditional” providers/direct purchase
Streamlined systems
Disinvest from low value/high cost services
Payment system reform
Collaboration
Cross-population/cross
system integration
 Provider networks
 New organizations
 Bringing to bear the talents
and commitment of
individuals and families
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Collaboration
…a mutually
beneficial and welldefined relationship
entered into by two
or more organizations to achieve
common goals. The
relationship includes
a commitment to a
definition of mutual
relationships and
goals; a jointly
developed structure
and shared responsibility; mutual
authority and
accountability for
success and sharing
of resources and
rewards.
Michael Winer
Quality and performance
Outcome and performance
measurement and benchmarking
 Quality/performance improvement
 Building quality in
 Effective and efficient quality
management
 Role of information technology
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HCBS Quality Framework
New Technology
Talking computers
 PDAs
 Smart cars and smart houses
 Bioengineering
 Face recognition software
 Vocal implants
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The Challenge Is To
Find Ways To ...
 Encourage,
model and
support an “action bias”
consistent with
retooling...
 Encourage,
nurture and
support alliances that
work to mobilize energy
to act...
Anyone who has
never made a
mistake has never
tried anything new.
Albert
Einstein
"There is no security on
this earth; there is only
opportunity."
Gen. Douglas MacArthur