The Promise of Self-Determination & Person Centered Planning

1. The Promise of Self-Determination & Person Centered Planning

2. Purpose Today • What is Self-Determination? • Is it related to Person-Centered Planning? • A bit of history & how folks thought it up • Examples of self-determination • A New Day in Virginia – 1 life, 53 years • Scientific outcomes - the short version • Virginia can do something never done before: bring people out of Centers with Person-Centered Planning and Self-Determination

3. SELF- DETERMINATION The purpose of self-determination is to empower individuals to craft meaningful lives in communities.

4. The Original Concept/Promise Self Determination: If people gain control, Their lives will improve, And costs will decrease (or not increase)

5. Tools of Self-Determination: How Do People Gain Control? (Power Shift) • Person-centered planning • Individual budgets • Independent support • Independent handling of the money

6. Our History • 1850 to 1970 Medical model dominant • Labeling, segregation, isolation, large scale institutions • 1970s community movement • Deinstitutionalization begins • Individual planning begins • “Interdisciplinary” – medical model fades • 1980s person centered thinking & planning emerges • 1990s PCP increases and awareness of money, power, & control is added • This is called “self-determination” • 2000 to present – PCP grows, self-determination influences, institutions decline, Medicaid Waivers are the fiscal key

7. Institutional Decline, Community Rise Conroy, IACC, 11/8/10

8. Person Centered Planning • Promise that the person’s needs would outweigh professional and system needs • Emerged from moving beyond professional dominance model • Makes for a good life for person • Dreams, gifts & talents

9. Sean in New Hampshire, 1993 • Just graduated from high school • Terrible car accident, fell into a coma • Sean’s state did not have any nursing homes for head injury • Professionals sent Sean to another state’s nursing home

10. Sean Lived in a Nursing Home • For several years • 100 miles from his parents • Didn’t get much individual attention • And he didn’t improve • His care was costing $120,000 per year • No one was happy

11. Sean’s Parents Asked: • Isn’t there another way? • How much is all this costing government? • $120,000? Really? • If we had control of that money, we would do things very differently.

12. Sean’s Parents Said: • We would adapt a house for him • We would hire his high school friends to work as his attendants • We would hire nurses part time to oversee his care • And we would have him close to us

13. Sean Came Home • Courageous local officials took risks • Used public funds in new ways on Sean’s behalf – ways Sean’s family wanted • Government dollars - buy a house • Make it accessible – lift, special entrances • High school friends - hired as attendants • They took Sean into town on outings • Family visited frequently, reading to Sean, talking in his presence, and touching him

14. Cost Outcomes: • Total dollars spent, even with the down payment on the new home and the payments on the mortgage, went down • From $120,000 to below $70,000 • (Even in the first year) • Went much lower later, too • In 1996, Sean began to open his eyes and focus • In 1997, he began to speak

15. Ultimate Outcome? • Most of us think that would not have happened in the “specialized head injury nursing home” • --- • EVER

16. Original story

19. Gain Control

20. 2012 COSTS Group Home Medicaid $117,735.52 SS 10,359.00 Work Shop 11,770.08 Transportation ?? Case Mgt. $ 3,918 Technology5,000 • * CSB Call back

21. Is There Any Good Science Available About This? • Robert Wood Johnson Foundation • Original pilot project in New Hampshire • National Self-Determination Initiative • 1997-2002, 23 states • Quantitative data from 10 states accumulated • Cash & Counseling demonstrations • 3 states at first • Random assignment – control group designs • Mathematica evaluating – data still pouring in

22. 5 Year National Study: Did Planning Really Become More Person-Centered? Conroy, IACC, 11/8/10

23. Did Power Really Shift?

24. Improvement in Perceived Quality of Life in 14 Out of 14 Areas – in Every State! Conroy, IACC, 11/8/10

25. Money The third part of the theory was that costs would stay the same Or go down When people and their allies got control of resources Did that happen?

26. YES: Six Solid Cost Studies New Hampshire Down 12% to 15%, depending on estimates Michigan Down 6% to 9%, depending on estimates New Jersey Steady California four regions Better outcomes, better lives, slower growth in costs Allegan County, Michigan Better lives, slower growth in costs 10 Year longitudinal study in rural California Steady budgets while all others were exploding

27. We must talk about costs Average cost of institutionalization $216,000* Average cost of community services through Medicaid Waiver $138,000 * * Governor’s Office, Jan 25, 2012

28. Imagine – Leaving Institutions with Control of Individual Budget • If a person in a Virginia institution…. • Could design how to use public funds with help from relatives & friends…. • With less than $216,000? • Let’s just say $140,000? • Saving $76,000 to be used for families on the Waiting List? • Could they design a really good life in a regular neighborhood, with full days & relationships? • (Well, Duh!)

29. Pat Carver 5833 Community Drive Brighton, MI 48116 810-231-6364 www.communitydrive.org JAMES CONROY426-B DARBY ROAD HAVERTOWN, PA 19083 PHONE: 484-454-3362jconroycoa@gmail.comWWW.OUTCOMEANALYSIS.COM