1. C ore I ndicators P roject An Overview of How Connecticut Is Using the NCI CONSUMER SURVEY FAMILY SUPPORT SURVEY CHILDREN’S SURVEY State of Connecticut Department of Mental Retardation Prepared by the DMR STRATEGIC LEADERSHIP CENTER July 2003 Use In Connecticut N ational C ore I ndicators NCI

2. CONTENTS 1.Overview of the CIP 2.Connecticut’s Participation 3.Examples of Data Analysis and Communication 4. Special Issues and Use of NCI in Quality Review System NCI

3. Purpose of the Core Indicators Project  Develop, field-test, & disseminate a nationally recognized set of PERFORMANCE INDICATORS that can be used in any state to gauge the effectiveness of specialized, publicly-funded DD services and supports.  Establish corresponding NORMS & STANDARDS as a basis for assessing and interpreting the indicators.  Design a CONSUMER SURVEY instrument and protocol for assessing system performance through the eyes of individuals who receive and rely on state DD agency funded services and supports.  Identify PRACTICAL APPROACHES for collecting, tracking and reporting the performance data in an economical and efficient manner.

4. National Coordinators NASDDDS National Association of State Directors of Developmental Disabilities Systems HSRI Human Services Research Institute The National Core Indicators is managed and coordinated by Information about the NCI, including updates can be found at: www.hsri.org

5. CURRENT Participating States Connecticut was one of six charter states in Phase I of the Core Indicators Project Alabama Arizona Connecticut Delaware Hawaii Illinois Indiana Iowa Kentucky Massachusetts (Minnesota) Montana 22 Participating Sates Nebraska North Carolina Oklahoma Pennsylvania Rhode Island South Carolina South Dakota Utah Vermont Washington West Virginia Wyoming Plus: Orange County, CA Orange County N.C.I. is GROWING year by year. About ½ of the country is now participating! (as of September 2002)

6. Why is Connecticut Participating?  To establish benchmarks for the department’s performance objectives.  To measure the effectiveness of services and supports provided over time.  To provide a mechanism for collecting information to be used in the new Quality Review process  To inform the department’s strategic planning process.  To measure Connecticut's performance nationally and against states with similar demographics.  To influence the process and assure it is consistent with Connecticut’s values and service delivery system. ?

7. 6 MAJOR INFORMATION COLLECTION ACTIVITIES METHODWHODescription Consumer Survey Random sample of 400+ adults receiving CM plus one other DMR service Cross-section of living arrangements. Personal face-to-face interview conducted during the late Fall and Winter months. Family Support Survey Random sample of 1000 families – receive CM plus one other DMR service Mailed survey sent to families of adults receiving DMR support who live at home. Survey usually completed in the Spring. Children/Family Survey Random sample of 1000 families of children - receive CM plus one other DMR service Mailed survey sent to families of children receiving DMR support who live at home. Excludes B3. Completed in Spring. Family/Guardian Survey Random sample of 1000 families – receive residential services Mailed survey sent to families of adults receiving residential support outside of the home. Completed in Spring. System Level Data DMR SystemDemographic and fiscal data. Includes mortality, injury and unusual incident rates. Financial/Medicaid data to be coordinated with Braddock research. Provider Survey Private Providers under contract with DMR Mailed survey that collects information about private provider staff retention and board membership

8. CONSUMER SURVEY MAJOR CATEGORIES COVERED IN THE INTERVIEWS 1.HEALTH 2.SERVICES 3.INCLUSION 4.CHOICE 5.RESPECT & RIGHTS 6.PROTECTION & RIGHTS 7.CASE MANAGEMENT 8.ACCESS 9.SAFETY 10.SATISFACTION 11.RELATIONSHIPS 12.ACCEPTABILITY 13.STABILITY

9. QUESTIONS: Specific Questions on the Survey CATEGORY CONCERN: Area or issue under assessment ALL PERCENTAGES REFLECT POSITIVE ORIENTATION HIGH Rank of 1, 2 or 3 MIDDLE Rank of 4, 5, 6 or 7 LOW Rank of 8, 9 or 10 Connecticut Ranks EXAMPLE OF DATA Our display of data includes the following information: Highest Score for each item Lowest Score for each item CT’s Rank out of Total States Reporting Data Note: LOWER number is a Better (Higher) Rank. 1 is Best and 10 is worst. CT’s Score for each item

10. Example: INCLUSION HIGH Entertainment MIDDLE Shopping, Errands LOW Exercise, Eat out, Religious Services Connecticut Ranks CONCERN: People use integrated community services and participate in everyday community activities. ALL PERCENTAGES REFLECT POSITIVE ORIENTATION QUESTIONS: 1.Do you go Shopping? 2.Do you go out on errands and appointments? 3.Do you go out to exercise or play sports? 4.Do you go out for entertainment? 5.Do you always eat at home-or do you sometimes go out to eat? (Percent who go out to eat). 6.Do you go to religious services or events?

11. CONCERN: People receive the same respect and protection as others in the community. Example: PROTECTION & RIGHTS HIGH MIDDLE Enter home w/o asking, Enter bedroom, Use phone, Be left alone when want to LOW Open mail, Be alone with guests Connecticut Ranks ALL PERCENTAGES REFLECT POSITIVE ORIENTATION QUESTIONS: 1.Does anyone ever open your mail without permission? [% no and some opened] 2.Does anyone come into your home without asking? [% no} 3.Does anyone come into your bedroom without asking? [% no] 4.Are you allowed to use the phone when you want to? [% yes] 5.When you have guests over, can you be alone with them or does someone have to be with you? [% yes or not always] 6.Can you be by yourself as much as you want to? [% yes]

12. CHANGES OVER TIME COMPARISON OF Trends ON THE NCI CONSUMER SURVEY Since Connecticut has completed the survey for 3 years now, can also look at

13. Example: CHANGE: Health & Services HEALTH Slight decline in all 3 areas. Still rank in highest grouping for OB/GYN and Dental Exams. SERVICES Slight decline in Case Management and Clinical Services. Larger decline in Transportation. Slight improvement in Assistive Technology and Respite. 1999 CIP RESULTS 2000 CIP RESULTS H 1 2 3 M 4 5 6 7 L 8 9 10 Rank KEY FOR READING GRAPHS

14. FAMILY SUPPORT SURVEY FAMILY/GUARDIAN SURVEY FAMILY/CHILDREN SURVEY The same type of analyses are also completed for the Family Surveys

15. ALL PERCENTAGES REFLECT POSITIVE ORIENTATION HIGH MIDDLE Receive Information, Easy to Understand, Changes in Staff, Staff Speak Language LOW Choose Providers, Choose Staff Connecticut Ranks INFORMATION, CHOICE & LANGUAGE QUESTIONS: 1.Do you receive information about services and supports that are available to your family? 2.If you receive information, is it easy to understand? 3.Do you choose the agencies or providers that work with your family? 4.Do you choose the support staff that work with your family? 5.Are frequent changes in support staff a problem for your family? 6.If English is not your first language, are there staff who speak with you in your preferred language? Example: FAMILY SUPPORT

16. QUESTIONS: 1.Do you receive information about services and supports that are available to your family? 2.If you receive information, is it easy to understand? 3.Do you receive information about the status of your child’s development? 4.If yes, is this information easy to understand? 5.Do you get enough information to help you participate in planning services for your child? 6.If your family has a service plan, did you help develop the plan? ALL PERCENTAGES REFLECT POSITIVE ORIENTATION HIGH MIDDLE Receive information about services, Receive information about development, Information re: development easy to understand LOW Enough information to plan, Got help developing the plan, Information is easy to understand Connecticut Ranks CONCERN: People receive information that is understandable and useful in the planning process. Example: INFORMATION & PLANNING

17. To date, small sample sizes, random selection, and timeliness of the national analyses have presented some special challenges for using the NCI as part of a DMR QA/QI process. SPECIAL CONCERNS & FUTURE PLANS NEW DIRECTION: The NCI will become an integral component of the new enhanced QI process within DMR. The Consumer Survey – with supplemental items – will form the basis for evaluating personal outcomes. Survey data from families and guardians will be integrated into a consolidated QI report for assessing the full DMR system, regions, and service providers.

18. STEP 1 – DATA ANALYSIS Regional/Provider Data Analysis (including NCI survey satisfaction data) Provider Organizational Self-Assessment STEP 2 – SAFETY CHECKLIST PROBES Emergency Planning Environmental Safety – Facility/Home STEP 3 – PERSONAL OUTCOMES REVIEW FOCUS AREAS Planning & Personal Achievement Relationships & Community Connections Choice & Control Rights, Respect & Dignity Safety Health & Wellness COMPONENTS NCI Consumer Survey Supplementary interview with the Person Interview with Support Provider Observations Record Review STEP 4 - SUMMARIZE FINDINGS STEP 5 - PROVIDE FEEDBACK STEP 6 - IMPROVEMENT PLANNING Individual/Regional/State Levels New Quality Review in CT to include NCI

19. More Information on the National Core Indicators can be found at www.hsri.org Information regarding Connecticut’s participation can be obtained by contacting The Connecticut State Department of Mental Retardation barbara.pankosky@po.state.ct.us beth.mcarthur@po.state.ct.us