National Core Indicators Consumer Survey

1. National Core Indicators Consumer Survey Sarah Taub & June Rowe Human Services Research Institute December 9, 2004

2. Background & Basics • National Core Indicators • Started in 1997 • Over 22 states participating • Importance of consumer perspective • Tool designed to measure specific indicators; not a general satisfaction survey • Reports generate national benchmarks for comparison

3. CMS and States are defining quality outcomesfor HCBS services

4. Quality Framework: Quality Management System • Design – how services and supports are designed and delivered • Discovery – methods and processes to monitor the quality of services and supports (data collection, analysis for patterns and trends) • Remediation – action to fix problems • Improvement – making sub-state and statewide improvements NCI is an important discovery process – quality of services from the individual’s perspective Information from NCI used to make improvements in HCBS services

5. New Approach to Quality in HCBS Waiver Application • State build quality and self-direction into the design of their waiver application • State monitors individuals and fixes problems • State collects and analyzes data for trends and patterns across populations • State makes changes to policy, practices and resources based on their analysis • CMS maintains and on “going dialogue” with states and looks for evidence of state over-sight • States report the Quality management (QM) activity and results to CMS and the public

6. Quality Management:Quality of Waiver services from a variety of perspectives and data sources • Case management monitoring • Incident reporting (e.g., abuse/neglect, major injuries, deaths, medication errors) and risk management • Provider reviews • Consumer surveys!!!!! • Review of claims (e.g., under/over utilization of services) • Assessments and service plans

7. Aligning the Quality Framework with the NCI survey

8. QF Focus Area: System Performance NCI provides important information about the overall quality of the state’s waiver services and supports

9. Overview of Survey Tool • Components of the Survey • Pre-Survey Form • Background Information • Section I • Section II • Interviewer Feedback Sheet

10. Pre-Survey Form • Purpose • To provide interviewers with information needed for scheduling • To determine special accommodations, communication issues, etc. • To obtain familiar names and terms for ease of conversation (fill in the blanks!) • Process varies by state… • Who best to fill out form and where to get the information • Informed consent procedures

11. Pre-Survey Form • Key items to review prior to scheduling interviews • Does caregiver need to be present? • Communication needs? • Familiar terms and names

12. Background Information • General • Collects demographic and indicator data • Very important for data analysis! • Unique survey code or identifier must be used • Highlighted items are used for Risk Adjustment • Some information may come from records; other information could be provided by staff or family • OK to separate this section and have it filled out during interview

13. Background Information • Specific • Date of Birth is used to calculate age, then deleted • Do NOT enter other information that would identify the person (e.g., name, SSN) • Behavioral Support Needs section should be filled out by someone other than the person receiving services

14. Background Information • Core indicators • The proportion of people receiving psychotropic medications • The proportion of people who have had a physical exam in the past year • The proportion of people who have had a GYN exam in the past year • The proportion of people who have had a routine dental exam in the past six months

15. Background Information • Core indicators • The proportion of people who maintain healthy habits in such areas as smoking, weight, and exercise • The proportion of people who are exercising self-determination with regard to the services they receive

16. Section I: Direct Interview Things to keep in mind… • Only the person receiving services may respond • Conduct interview in private if possible • People may skip any question • Do not leave any questions blank – record “9” if necessary • Others may provide assistance by interpreting questions and responses • Introduce yourself and make sure people understand purpose of interview

17. Work/Daytime Activities • Core Indicators • The proportion of people reporting satisfaction with their job or day program • The proportion of people indicating that most support staff treat them with respect

18. Work/Daytime Activities For Questions 1-2: • include all types of work and daytime activities - paid, unpaid, community-based jobs, supported employment, facility-based jobs, day programs, volunteer work, non-vocational programs, training facilities, etc. • If respondent has more than one job/day activity, ask how s/he feels in general or “most of the time.” • If respondent works and attends school, ask about work only

19. Home • Core indicators • The proportion of people who report satisfaction with where they live • The proportion of people who report satisfaction with the amount of privacy they have • The proportion of people who report that they feel safe in their home and neighborhood

20. Home

21. Friends and Family • Core Indicators • The proportion of people who report having friends and caring relationships with people other than support staff and family members • The proportion of people who report having a close friend, someone they can talk to about private matters • The proportion of people who are able to see their families and friends when they want • The proportion of people reporting feeling lonely

22. Friends and Family

23. Friends and Family • Keep in mind… • These questions often elicit emotional responses • Questions 12 and 14 are about whether people get support to see family and friends. • Read response options carefully!

24. Satisfaction w/Services & Supports • Core Indicators • The proportion of people who know their service coordinators • The proportion of people reporting that their service coordinators help them get what they need • The proportion of people reporting that service coordinators asked about their preferences

25. Satisfaction w/Services & Supports • Core indicators • The proportion of people who report that they know their “advocate” or guardian • The proportion of people reporting that they receive support to do or learn new things • The proportion of people who are satisfied with their personal lives • The proportion of people who report having adequate transportation when they want to go somewhere

26. Satisfaction w/Services & Supports 

27. Self-Determination • Core Indicator: • The proportion of people who control their own budgets • People who are self-directing their services and supports know… • how much is in their budget • how it is being spent

28. Interviewer Ratings • Indicate whether Section I could be completed • Did the person understand questions? • Did the person give consistent and valid answers?

29. Transition to Section II • If the person was able to provide valid responses, see if a break is needed. • If the person was not able to provide valid responses or does not want to continue, end interview and complete Section II with other respondent.

30. Section II Basics • Try to interview the person • Alternative interviewees… • Family • Advocate • Staff • Be careful not to overuse the “NA” • Indicate who was interviewed for every question Indicate respondent: ( ) 1-consumer ( ) 2-other

31. Community Inclusion Core Indicator: • The proportion of people who participate in integrated activities in their communities • Proportion of people who exercise or play sports

32. Community Inclusion • Integrated community activities… • Shopping (grocery, clothes etc.) • Errands/appointments (dentist, bank etc.) • Leisure activities (museums, library etc.) • Go out to eat • Attend religious services and other community meetings • Exercise/play sports (local gym, Y)

33. Community Inclusion Things to bear in mind about the Community Inclusion section: • Try to rule out segregated activities just for people with developmental disabilities • People go out to do activities rather than having them brought into the home • If the person answers yes, may ask for an example to verify

34. Community Inclusion Question 34. Do you (does this person) exercise or play sports? (What kind of exercise? (Examples: jogging, swimming, riding bike, etc.) __2 Yes, in a community setting __1 Yes, gets exercise but in a non-integrated setting __0 No __9 No response, unclear, don’t know

35. Choices Core indicator: • The proportion of people who make choices about important life decisions • The proportion of people reporting they chose what to buy with their own spending money

36. Choices • People make choices about… • Where they live • Who they live with • Staff at their home/work • Daily schedule • Free time • Work • Spending money • Case manager/service coordinator

37. Choices Things to bear in mind about the choices section: • How involved is the person in making decisions • Code “2” if person really made the decision and/or made choices with spouse/partner • Code “1” if had some input • Be careful about “NA” – should avoid using for “not allowed” or “not capable”

38. Choice Question 37. Did you choose (or pick) the people you live with (or did you choose to live by yourself)? (Did anyone ask you who you’d like to live with? Were you given choices, did you get to interview people?) PS-6 Did you choose to live with __________________ ? (Other respondent – Did this person choose any of the people s/he lives with? Or: Did this person choose to live alone?) __8 NOT APPLICABLE – lives with family __2 Yes, chose people s/he lives with, or chose to live alone __1 Chose some people or had some input __0 No, someone else chose __9 Don’t know, no response, unclear response

39. Rights Core Indicator: • The proportion of people who report that their basic rights are respected by others • The proportion of people who have attended self-advocacy group or other groups that address rights

40. Rights People exercise their rights… • Mail • Visit with friends alone • Use of the phone • Self-advocacy

41. Rights Question 46. Do people read your mail without asking you first? (Other respondent – Does anyone read this person’s mail without permission?) __8 NOT APPLICABLE - does not get mail __2 [Yes] – mail is read without permission __0 [No] – person reads own mail or others read with permission __9 Don’t know, no response, unclear response

42. Rights Question 48. Are you allowed to use the phone when you want to? If person is unable to use the phone or doesn’t have a phone/TTY, code as “NOT APPLICABLE.” (Other respondent – is this person allowed to use the phone when s/he wants to?) __8 NOT APPLICABLE - doesn’t have phone/TTY or unable to use phone __2 Yes, can use anytime, either independently or with assistance, has own phone, or uses email __0 There are rules/restrictions on use of phone __9 Don’t know, no response, unclear response

43. Access Core Indicator: The rate at which people report the “needed” services were not available

44. Access • Do you get the services you need? We are asking about services and supports, such as: transportation, job coaching or job development, taking a class, getting medical or dental care, counseling services, finding housing, meeting people, relationship issues, communication technology, environmental modifications, information about benefits or insurance, community involvement, etc. (Other respondent – Does this person get the services and supports s/he needs?) __2 Yes __1 Sometimes, or doesn’t get enough of the services needed __0 No __9 Don’t know, no response, unclear response

45. Survey Conclusion Tasks • Indicate who you interviewed for Section II. • Your opinion matters!!!!! Fill out the “interviewer feedback sheet”