What Does Research Tell Us About Self-Determination and Self Direction Services?

1. What Does Research Tell Us About Self-Determination and Self Direction Services? International Conference on Self-Determination Kevin J. Mahoney May 4, 2009

2. Receiving Paid Assistance at 9 Months Non-Elderly Adults Percent Children Elderly Adults ** ** ** ** ** ** T C NJ T C FL T C NJ T C FL T C FL T C AR T C AR *, ** Significantly different from control group at .05, .01 level, respectively.

3. Very Satisfied with Overall Care Arrangements Percent Non-Elderly Adults Children Elderly Adults ** ** ** ** ** ** T C NJ T C FL T C NJ T C FL T C AR T C AR T C FL *, ** Significantly different from control group at .05, .01 level, respectively.

4. Had an Unmet Need for Help with Personal Care Percent Non-Elderly Adults Children Elderly Adults * ** ** * ** T C NJ T C FL T C NJ T C FL T C FL T C AR T C AR *, ** Significantly different from control group at .05, .01 level, respectively.

5. Contractures Developed or Worsened Percent Non-Elderly Adults Children Elderly Adults ** * * T C NJ T C FL T C NJ T C FL T C FL T C AR T C AR *, ** Significantly different from control group at .05, .01 level, respectively.

6. Very Satisfied with Way Spending Life These Days Percent Non-Elderly Adults Children Elderly Adults ** ** ** ** ** ** * T C NJ T C FL T C NJ T C FL T C FL T C AR T C AR *, ** Significantly different from control group at .05, .01 level, respectively.

7. Informal Caregivers Very Satisfied with Overall Care Adults Children Percent *** *** *** *** C T T C T C T C AR FL FL NJ *,**,*** Significantly different from control group at .10 (*), .05 (**), or .01 (***) level.

8. Effects on Medicaid PCS/HCBS Expenditures—Year 1 • Significantly higher for treatment group in each state • In Arkansas and New Jersey, mainly because control group received substantially less care than authorized • In Florida, mainly because children and adults with developmental disabilities got larger benefit increases after assigned to treatment group

9. Effects on non-PCS Medicaid Expenditures • Other Medicaid costs moderately lower for treatment group in each age group in all three states • The best example: • In Arkansas, compared to control group, treatment group had 40% fewer admissions to nursing facilities in second year

10. Effect on Total Medicaid Costs • In Arkansas, no significant difference by end of year two • Reductions in nursing facilities and other waiver costs off-set increase in personal care costs • In New Jersey and Florida, costs up 8-12%, but states learned how to control costs • Higher costs in Arkansas and New Jersey due to failure of traditional system

11. Lessons Learned from the Replication States Implementing Self-Direction Programs with Flexible Individual Budgets: Lessons Learned from the Cash & Counseling Replication States Available on the Cash & Counseling homepage: www.cashandcounseling.org

12. Final Results from Arkansas’ 10 Years of Experience Under a 1115 Waiver Cost are 13.8% higher than if agency delivered $6,728,320.87, including administrative cost of $2,874,400.00) However, 89.4% more care was delivered through the consumer-directed model If the agency were to deliver this same quantity of services, it would have increased the agency personal care expenditures by $33,935,955.31