Transcript Quality Tracking Activities Conducted by the President of

Provider of the Future
Jim Conroy
Center for Outcome Analysis
www.eoutcome.org
Presentation Purpose
Trace historical trends in
developmental disabilities
Analyze the present situation
Predict likely developments
See how providers will have to change,
what they will look like if they want to
thrive and support people well
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 medicallyoriented “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
History – 1990s to present
 Self-Determination demonstrations –
dominance of the individual and allies
Self-Determination: 1994
 Self-Determination:  Tools of SelfDetermination
 If people gain
control,
 Their lives will
improve,
 And costs will
decrease
• (or not increase)
 Individual Budgets
– Setting an amount and
controlling its use
 Independent Case
Management
– Support Coordination
 Fiscal Intermediaries
– Without conflict of
interest
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
 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
Coming Soon: The Perfect Storm
 Three storms coming
 Shrinking Medicaid resources
 Demographics of the developmental disabilities
and elderly populations
 Shrinking workforce
 Will soon converge to create the perfect
storm and rock the entire developmental
disability system (Nerney, 2000)
Perfect Storm

Decreasing resources
–

Increasing Demand
–

Waiting lists and Aging caregivers – will double
Workforce problems
–

Poor community salaries – high turnover, poor retention, low
quality
Workforce pool will shrink
–

Demographics of who we hire – there will be fewer of these
people
Competition will explode
–

Local, state, and Federal resources; competition for resources
from military priorities; Medicaid and Medicare threatened,
states broke; Deficit Reduction Act
Elders & boomers needs – will compete for resources and
workers
It is NOT AN OPTION to continue “business as
usual”
“Need Storm” in Developmental
Disabilities
 In 2000, about 700,000 people with developmental
disabilities lived at home with a family caregiver over the
age of 60.
– That’s about 25% of all people with developmental disabilities.
(Braddock, 2002)
 This is going to increase
 By 2010: 1,163,000 will be living at home with aging
caregivers over 60.
 Waiting lists in the states now total about 74,000 for
residential services – not counting other needed supports
 The entire community residential system is only 411,000
people
 Must grow by 18% in a big hurry (Lakin, 2006)
“Demographic Storm” in Aging
 The Aging of America
– In 1900, only 1 in 25 was over 65.
– In 2030, 1 in 5 will be over 65.
 The fastest growing segment today among the elderly





population are those over the age of 85.
The population of America ages and eventually moves
from 12.5% to 20% of the entire population
But as the number of elders goes up fast, the number of
young people in the labor pool will decrease by about 7%
Boomers are aging – and will not accept nursing homes
1.6 million elders went to sleep in a NH last night
Competition for the community workforce will intensify(!)
Abstract: Providers Must Join and
Enhance Alliances for Common Cause
 Creative approaches to hiring and keeping
(international, elders, families, labor pools)
 Cross-group alliance (aging, DD, and MH – and
maybe a generic health care SD movement too)
 Medicaid changes are urgently needed – National
advocacy participation via ANCOR
 Organized labor roles – and vast changes recently
 IHSS model – extremely important to study
Specific Ideas

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NH experience: providers thrived but changed
Same in Michigan, same in Vermont
Experiment, quickly, with individual budgets and how
money flows in that model
– Seek this out, don’t run and hide – those who learn
this will thrive
 Study what this state is doing about the Independence
Plus Waivers and experiments with Social Security
disincentives to work and individual budgets and
organized labor relations
 Rethink agency mission re: jobs. Offering people
ways to get jobs and make money will lead to great
success
Facets of Future Providers
 Future providers will look different
 More and more, people receiving services will have control over






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the public dollars
Providers will compete, one person at a time, to put together
support plans that make sense for the individual
Behaving more like a “labor pool” will be adaptive
This sounds absurd and terribly costly to us now
But some believe it’s the current system that’s absurd and too
costly
We have the most expensive human service system in the
history of the world
And yet huge waiting lists, low salaries, and poor worker
satisfaction
Perhaps the In Home Supportive Services program of California
will offer a model for future service systems
Labor Versus Disabilities:
Adversarial History
 Questions of values
 Organized labor existed primarily in large
scale segregated settings
 These settings fell out of favor in the past
30 years
 Labor had to fight to preserve jobs  Although those jobs were in settings that
were not conducive to best practice
Hence …
 Advocates and organized labor usually found
themselves on opposite sides…
– Of institutional closures
– Of legislation to expand community options
– Of litigation to close institutions and expand
community options
– On hiring and firing practices, especially treatment of
staff accused of wrongdoing
A New Model Emerged
 California, 1990s
 In-Home Supportive Services
 Designed for aging and disabled
 County-based public employee labor pools
 Better trained and better paid
 To be called on by consumers as needed  And to follow consumer direction principles
Consumer Direction
 Consumers may hire, train, supervise, and fire
their individual providers
 OR
 Choose to use a county contracted IHSS
provider or homemaker
 Unions negotiate hourly wage rates either way
 And some of the primary principles of selfdetermination are at the forefront of the new
approach
IHSS Now
 All 58 counties
 450,000 people, over 375,000 workers
 96% of the workers only work for one person
 More than 40% are relatives
 Some of them, and all of the “labor pool” workers,
are unionized
 No strikes – no contesting firings!
 Salaries vary across counties, but are higher than
ever before
 Robert Wood Johnson Foundation funded several
years of evaluations - with positive findings
Choices
 Advocates
– Continue along the
present path
– Low wages
– High turnover
– Declining quality
– Increasing scandals
 OR - try something
entirely new, AND in
keeping with best
practices
 Organized labor
– Continue along the present
path
– Defend institutional settings
– Decreasing political support
– Inevitable decline of
membership
 OR - try something
entirely new, favoring
community, and consumer
direction
Summary
 Traditional provider agencies will survive, but survive better if they
change
– Subunits for individual budgets, self-determination, and progressive
person-centered options
 New, small, individual-oriented agencies are springing up, and will
probably grow into the “next generation”
 But “replacing” the current providers will probably be a generational
phenomenon
 In the meanwhile, though, Medicaid drives our system – and we can
see the way Medicaid is going to change over the next decade
 Watch what’s happening carefully
–
Bring in expertise, include in staff retreats, reconsider any strategic
planning
– Stay active in the national organization(s)
– And watch what the largest labor union in the world is doing – SEIU.
The End, Thank You
 Comments?
 Questions?