Working Toward A Sustainable Future

1. In support of people with developmental disabilities …. Working Toward A Sustainable Future Orange County Regional Center January 31 2004

2. Why weare 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?

3. Where we’ve been … • 1950s and 1960s – Expansion of public institutions – Segregation – Low expectations – Few community services • 1970s – Institutional reform – ICF/MR program created – Deinstitutionalization – Enactment of IDEA – Community services take root • 1980s – Supports paradigm emerges – Family support gains momentum – HCBS waiver program created – Integrated employment – IDEA Part C – Community expansion

4. 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 – Self-advocates and families assert their political voice – Olmstead decision

5. Report card … • 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

6. 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 Source: Lakin

7. 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

8. 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

9. The train wreck … • 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

10. 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???

11. 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

12. 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

13. Impact on our world • 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

14. 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

15. Compounding stressors • Accelerating service demand • Workforce • Quality problems • Fragmentation • Antiquated technologies • Increasing diversity

16. Demand drivers … • Aging caregivers • Increased life expectancy • Incidence (e.g., autism) • Population growth • Heightened expectations

17. Aging & DevelopmentalDisabilities... 40% Source: Braddock, 1999

18. Workforce • Workforce crisis emerged in the late 1990s • 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

19. 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

20. 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

21. Antiquated technologies • 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

23. Heading for a crash! Weighty Legacy Services & Structures Budget Shortfalls Rising Demand Workforce Shortages Fragmentation Quality Problems Antiquated Technologies

24. 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

25. 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”

27. 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

28. The agenda must recognize … • 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

29. The significant problems we face can not be solved at the same level of thinking we were at when we created them. Albert Einstein

30. 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?

31. The values foundation … • We have learned … • Individual/family direction works • Effective person-centered planning works • Integration and inclusion amplify resources • Supporting people to make contributions amplifies resources • Action pathway – Resolute pursuit of principles of person-centered supports

32. “And lastly, and for all eternity, French, blue cheese or ranch?”

33. Efficiency • 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

34. Collaboration …a mutually beneficial and well-defined relationship entered into by two or more organi-zations to achieve common goals. The relationship includes a commitment to a definition of mutual relationships and goals; a jointly developed structure and shared respons-ibility; mutual authority and accountability for success and sharing of resources and rewards. Michael Winer Collaboration • Cross-population/cross system integration • Provider networks • New organizations • Bringing to bear the talents and commitment of individuals and families

35. Quality and performance • Outcome and performance measurement and benchmarking • Quality/performance improvement • Building quality in • Effective and efficient quality management • Role of information technology

36. HCBS Quality Framework

37. New Technology • Talking computers • PDAs • Smart cars and smart houses • Bioengineering • Face recognition software • Vocal implants

39. The Challenge Is To Find Ways To ... • Encourage, model and support an “action bias”consistent with retooling... • Encourage, nurture andsupport alliances thatwork to mobilize energyto act... Anyone who has never made a mistake has never tried anything new. AlbertEinstein 

40. "There is no security on this earth; there is only opportunity." Gen. Douglas MacArthur