Provider of the Future

1. Provider of the Future Jim Conroy Center for Outcome Analysis www.eoutcome.org

3. 150 Years of Institutionalization in the U.S.

4. 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

5. Behaviorism Deinstitutionalization (graph) Public education � PL 94-142, now IDEA Professional model/domination Interdisciplinary � the �Ps� Growth of community provider system History, 1970s

6. 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

7. Self-Determination demonstrations � dominance of the individual and allies History � 1990s to present

8. 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

9. 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

10. 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)

11. 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�

12. �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)

13. �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(!)

14. 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

15. 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

16. 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

17. 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

18. 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

19. 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

20. 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

21. 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

22. 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

23. 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.

24. The End, Thank You Comments? Questions?