1. Project Management Update NCI Steering Committee Meeting July 30, 2003 Minneapolis, MN

2. Participating NCI States (FY03) ND AK HI WA OR ID MT WY ND SD NE CA UT NV AZ CO NM KS OK TX MN IA WI IL IN MO AR MI OH KY TN MS LA AL GA FL SC NC VA WV PA NY ME VT NH MD DC DE NJ CT MA RI PR Orange County

3. Interested Participants… NCI participation proposed in three Real Choices System Change grants Montana North Dakota Washington D.C. State of California plans to join after one- year ramp up period

4. Status of Phase V (FY2003) Data Submission Type of Data# states in by 6/30/2003 % of expected data (FY03) % of expected data (FY02) Consumer Survey1794% (17/18)100% (15/15) Family Survey1393% (13/14) Family Guardian Survey9 90% (9/10)86% (6/7) Children Family Survey5100% (5/5)83% (5/6) Employment Data889% (8/9)100% (10/10) Staff Stability Data467% (4/6)83% (5/6) Board Representation457% (4/7)86% (6/7) Crimes350% (3/6)100% (4/4) Restraints343% (3/7)33% (2/6) Injuries233% (2/6)43% (3/7) Deaths563% (5/8)71% (5/7)

5. New Website: www.hsri.org/nciwww.hsri.org/nci Highlights… New “Join NCI” page has updated introductory materials Reports page re-organized Presentations posted on separate page “NCI Tools” State contact info, web links, state reports Separate section on interviewer training Separate section for meeting minutes

6. Consumer Survey New survey forms, codebooks, Access file have been posted to website Only minor technical revisions made Subcommittee will convene over next few months to address more substantial revisions Goal is to release new forms beginning of calendar year 2004 Preliminary report – draft to be distributed this week

7. Proposal for Data Access Review proposal from Rebecca Tucker- Smith

8. Summary of State Profile Responses

9. How is NCI data used? Setting goals & strategic planning Setting priorities for quality improvement, incorporate into Quality Management plans Budget requests to Governor and legislators Helps shape data reporting systems (e.g., incidents, mortality) Stakeholder advisory committees (Quality Councils) being formed to review results and make recommendations to state agencies

10. How are results disseminated? Many states compile reports of state results vs. national results and post on websites Some states beginning to look at provider level results & share with providers Summaries shared with families who filled out surveys (AZ) Simplified version of Consumer Survey report for self-advocates (VT)

11. What have other states added? Family survey questions: Fair hearing/complaint process (RCOC) Service coordinator turnover (RCOC) Early start (0-3) survey (RCOC) Support needs and future planning (CT) Consumer survey questions: Assistive technology (DE) Case management supplement (WA, HI, MA, IN, WY) Person-centered planning, additional health data (HI) Modified for people with chronic mental illness (IA) Health status supplement (NC)

12. What areas are states interested in expanding or developing? Additional health and safety indicators Questions about self-directed services Involvement of self-advocates Risk management Provider capacity Provider performance measures Modifications to adapt survey for people with different communication styles Direct support worker salaries, benefits, credentialing Crisis services

13. Trend Analysis – Selected Results

14. Trend Analysis Beginning to look at trends over past three years Five states collected Consumer Survey data annually for three years Connecticut Kentucky North Carolina Pennsylvania Rhode Island

15. CM helps get what person needs… 90% 88% 83% 78% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% 5 state averageAll state average FY00FY01FY02

16. 92.8% 93.6% 94.4% 92% 93% 94% 95% FY00FY01FY02 Person is satisfied with home…

17. 0% 20% 40% 60% FY00FY01FY02 RoommateHome staffCase manager Person had input in choosing…

18. Next Steps

19. Goals for this year Develop Core Health Status Supplement Awarded grant from WV DD Council Applied for CDC grant Will incorporate work done by North Carolina Quarterly e-newsletters for NASDDDS membership Prepare.ppt templates for states to present results Finalize revised set of Core Indicators Summary of State Profiles

20. Coming soon… New “Trainer’s Guide” for Consumer Survey, with Powerpoint slides Indicators and system data protocols will be updated following meeting and posted to website Data Submission Forms for FY04…please fill out and return!

21. Hot topics NCI vs. PES Crosswalk distributed and will be posted Waiting for formal statement from CMS Using Consumer & Family Survey data to look at outcomes by provider Cautions around sample size and comparisons among providers (especially small providers) Quality improvement vs. sanctions