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.

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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

Behaviorism Deinstitutionalization (graph) Public education – PL 94-142, now IDEA Professional model/domination

Interdisciplinary – the “Ps” Growth of community provider system

History, 1970s

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

History, 1980s and 1990s

Self-Determination demonstrations – dominance of the individual and allies

History – 1990s to present

Self-Determination: 1994

Self-Determination: If people gain

control, Their lives will

improve, And costs will

decrease • (or not increase)

Tools of Self-Determination

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

– Local, state, and Federal resources; competition for resources from military priorities; Medicaid and Medicare threatened, states broke; Deficit Reduction Act

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– 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(!)

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

Abstract: Providers Must Join and Enhance Alliances for Common Cause

Specific Ideas

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 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 self-

determination 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?