1. NCI: A Growing Commitment Five Years of Performance Measurement 127 th Annual AAMR Meeting, Chicago, IL Val Bradley  Human Services Research Institute

2. Project Beginnings NASDDDS and HSRI collaboration Launched in 1997 Seven field test states (plus steering committee) ~60 candidate performance indicators Development of data collection instruments

3. What has NCI Accomplished? Nationally recognized set of performance and outcome indicators for developmental disabilities service systems Reliable data collection methods & tools Baseline and trend data at the state & national level Benchmarks of performance

4. NCI Structure Currently 21 states plus Orange County in Phase V (FY2003) HSRI provides technical assistance under subcontract to NASDDDS Subcommittees address specific issues Meet with full steering committee annually

5. Participating States Phase V WA IN AZ UT NC IL IA OK VT WV KY PA MA DE RI CT MT WY NE HI Orange County WA IN AZ NC IA OK VT WV KY PA MA DE RI CT WY NE HI Orange County AL SD SC ME

6. What are the data sources? Consumer Survey Family Survey Adult Family Survey (at home, 18+) Family Guardian Survey (out-of-home) Children Family Survey (at home, <18) Provider Survey Staff Stability Board Representation System Data Incidents Mortality

7. 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

8. 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

9. 92.8% 93.6% 94.4% 92% 93% 94% 95% FY00FY01FY02 Person is satisfied with home…

10. 95.6 82.5 94.8 82.8 93.4 75% 80% 85% 90% 95% 100% FY00FY01FY02 % feel safe at home% feel safe in neighborhood People report feeling safe…

11. 40% 60% 80% 100% FY00FY01FY02 Physical exam within the last year GYN exam within the last year Dental check-up within the last six months Frequency of health visits (5 state average)

12. 0% 20% 40% 60% FY00FY01FY02 RoommateHome staffCase manager Person had input in choosing…

13. 65% 75% 85% 95% FY00FY01FY02 CTKYNCPARI CM helps get what person needs… (by state)

14. Staff Stability Rising trend in staff turnover over past three years Turnover is higher in residential settings vs. day settings In FY2002, turnover rates ranged from 33% (Hawaii) to 54% (Indiana)

15. Direct Contact Staff Turnover 35.2% 41.7% 52.9% 35.8% 45.1% 31.2% 0% 10% 20% 30% 40% 50% 60% 199920002001 residential day

16. Consumer Survey 7917 surveys completed 67% of people interviewed were able to respond to Section I

17. Consumer Survey Phase IV Level of MR Severe 14.5% Moderate 26.3% Unknown 2.5% No Label 3.7% Profound 14.9% Mild 38.2%

18. Consumer Survey Phase IV Place of Residence 0.020.040.0 0.9Nursing Facility 3.7Other 4.3Apartment Program 8.5Specialized Facility 9.9Foster Care or Host Home 18.6Independent Home or Apt 24.7Group Home 29.1Parent or Relative Home

19. Areas of Strength 92% report they have enough privacy over 90% report support staff treat them with respect 94% satisfied with home 96% satisfied with work/day program High community participation (69% to 96%)

20. Areas for Improvement 77% report service coordinators get them what they need, compared with 90% in FY2001 48% reported “sometimes” or “always” lonely only 52% of women had a GYN exam in the past year and 7% have never had one

21. How Are NCI States Using Their Data? Pennsylvania – Independent monitoring and quality improvement South Carolina – Core component of external monitoring Wyoming – Annual reports, CMS review Massachusetts – Strategic planning South Dakota – Provider profiles North Carolina – Health indicators

22. Rhode Island has formed a Quality Management Group Arizona advertises reports in their newsletter; sends reports to all families who participated; and shares their information with the Legislature and Governor. Alabama will use the consumer survey as part of Wyatt settlement

23. Kentucky included NCI in its ten-year plan. They are expanding their focus on team interviewing techniques to enhance consumer and family participation. Washington used the NCI data collection protocols to revise their incident reporting and mortality data system In Indiana, the information from the surveys has been posted on the web site of the Bureau of Quality Improvement Services and notice has gone out to all providers

24. For More Information Final Reports for Phase IV (FY2002) are available on HSRI’s website: www.hsri.org www.hsri.org Contact: staub@hsri.org cmoseley@nasddds.orgstaub@hsri.org cmoseley@nasddds.org