Money Follows the Person Quality of Life Survey

1. Money Follows the Person Quality of Life Survey Kristina Rall Rebecca Mason Survey Team

2. Additional training information is available in the interviewer manual provided by Mathematica Policy Research.

3. Chapter 1: Introduction to the Study In this module we will discuss why administering the QoL matters • Importance of the Money Follows the Person Evaluation • MFP Program Goals • MFP Program Sponsor • Importance of the Quality of Life Survey • Only data that reflects the participant’s viewpoints

4. Section A: Description of MFP Initiative Program Goals: • Medicaid program participants currently living in institutions want to live in the community. • Caring for program participants in the community is less costly than caring for them in institutions. • Transitioning program participants from institutions to communities will preserve their independence and ties to their community. Program Sponsor: The Department of Health and Human Services’ (DHHS) Centers for Medicaid and Medicare Services (CMS)

5. Section B: Description of MFP Evaluation CMS has awarded MFP demonstration grants to assist states in: • Making services available in a manner that permits funding to “follow the person” to the most appropriate and preferred long-term care setting. • Offering services to support individuals transitioning to community-based settings. • Assessing the effects of the MFP program on Medicaid program participants.

6. Section C: Importance of Study The study is being conducted to help states evaluate how well the MFP initiative is meeting the needs of program participants and what changes may need to be made to improve the program. Collecting information on program participants’ quality of life is of particular importance given that the purpose of the MFP initiative is to improve quality of life. Results will be summarized in a report to Congress.

7. Chapter 2: Interviewing Guidelines This module will cover the following: • Making contact with the program participant • Conducting the interview • Establishing rapport • Important tips right before you start the survey • Introducing yourself and the survey • Administering the Survey • Scope of Interviewers Role • Closing the Interview • Gaining cooperation • Interacting with people with special health care needs

8. Section A: Before the Interview • Call the program participant or institution to arrange a time and place to conduct the interview – your state may provide you with a script to use during the call. • If contacting an institution, be prepared to speak with a staff member. And respond to questions regarding HIPAA or the legitimacy of the study (see Appendix B of your manual). • Be prepared to provide contact information to the program participant or staff member so they may contact you with questions prior to the interview or to cancel or change the interview appointment. • Prior to ending the call, confirm the date, time, and location of the interview. • If you are not able to reach the program participant or institution by phone, an in-person attempt should be made.

9. Section B: At the Interview Ensure you are interviewing the correct person by verifying his or her name, address, and date of birth. Introduce yourself and the study – familiarize yourself with the FAQs Be sure you and the program participant are comfortable. Minimize distractions such as television or radio and make every attempt to conduct the interview in private.

10. Administering the Questionnaire Ask every question unless a skip pattern indicates otherwise. If in doubt, ask the question. It can always be dropped later. Answering questions is voluntary. Do not push the respondent if they do not wish to answer a question. Do not leave any answers blank (unless the skip patter indicates it should be). If the respondent does not answer, record “refused”. Ask the questions verbatim. Become familiar with the Question-by-Question section of your manual (Appendix A). Clarify answer using probes provided. Except in an assisted interview, the respondent should be the only person answering the questions. Be sensitive to the respondent's physical and emotional state (discussed further in Module 5: Interacting with People with Special Health Care Needs).

11. Closing the Interview Thank the respondent for their participation Leave contact information for the state survey director (or other designated person) so the respondent can contact someone if he or she has additional questions.

12. Section C: General Interviewer Guidelines The following slides will discuss the following important general interviewing guidelines: • Establishing rapport • Knowing and sharing your limits • Program participants in immediate danger

13. Establishing Rapport (1/2) • Establishing a friendly and respectful rapport with program participants is critical. • Program participants will be at ease when interviewers are: • Understanding. • Honest and accurate in responding to questions about the survey [see FAQ]. • Non-judgmental. • Respectful of their culture. • Appreciative of the information provided. • Speak clearly.

14. Establishing Rapport (2/2) Present yourself as a straightforward, self-confident, trustworthy person on legitimate business. Show respect for the lives and privacy of the people with whom you interact. Be aware of your facial expressions and body language. Observe and consider the program participant’s facial expressions and body language.

15. Know and Share Your Limits Be clear about the purpose of your visit. Limit social interaction that may sidetrack the interview or misrepresent the visit as a social call. Be clear about the limits of your ability to change the program participant's living situation or services. If the program participant requests assistance or provides complaints about existing services, direct them to their case manager.

16. Program Participant in Danger Intervention may be warranted for program participants whose health, safety, or well-being seems threatened. Despite any pledge of confidentiality made, you may be required by state law or policy to report some incidents of alleged abuse or neglect described. your states should have a clearly established procedure to follow if you believe a program participant is in jeopardy, through abuse, neglect, unsafe living conditions, or inadequate services. In general, you should report these instances to the state survey director (or other designated person). State survey directors can then rely on legal advice to determine how these reports should be handled.

17. Section D: Gaining Cooperation You should approach program participants with the attitude that they will want to complete the survey. Most program participants will be interested in participating once the purpose of the survey is explained to them. Some program participants may have additional concerns that can be addressed by assuaging concerns about confidentiality and the interview process. Carefully review the FAQ before speaking with any respondent.

18. Section E: Interacting With People With Special Health Care Needs Individuals in the population your are interviewing are likely to have health needs that may require some accommodations to complete the interview. This module discusses the two most common health issues that may affect participation are: • Fatigue • Cognitive impairment

19. Fatigue Participants may tire easily. Assess the participant’s ability to continue as the interview progresses. If you are not sure if the respondent is feeling fatigued, simply ask. Example of appropriate probes are provided on page 7 in your manual. Ask the participant if they would like to take a break/step away for the interview site for a minute.

20. Cognitive Impairment Use probes or repeat the question text if the respondent does not understand the question. Help keep the participant free from distractions. Say the person’s name often to keep their attention and focus on the interview. Speak slowly and clearly, but don’t exaggerate the inflection or tone of your voice. Check frequently to be sure the person understands you. Be an active listener and provide neutral feedback such as “I see” or “I understand.” Be prepared to wait. People with cognitive impairments may process information slowly.

21. Section F: Data Security and Confidentiality of Respondent Information States collecting data for the Money Follows the Person project have a legal and moral obligation to keep all information gathered about sample persons in the strictest confidence. This responsibility starts with you, but everyone involved in the project must adhere to the principles that guide the following confidentiality procedures: • Survey data must not be released to anyone outside the project. When survey data are presented, they will only be presented in summary form and will be stripped of any identifying information. • Access to individual identifying information must be limited to those whose roles demand it and only for the period required. Physical safeguards such as locked file cabinets protect the data and prevent unauthorized access. • No identifying information can be published or released to anyone, except as may be required by law, regulation, or subpoena. • Data collected from respondents will be used for research purposes only.

22. Chapter 3: Data Collection Overview In this section we will discuss specific data collection procedures: • When the data will be collected • MFP participants to be interviewed • Proxy and assisted interviews • The information to be collected • Where the surveys will be conducted • How the surveys will be conducted

23. Section A: When the Data Will Be Collected MFP participants will be interviewed three times: • At “Baseline”: after they have been accepted into the MFP program but before they are discharged from the institution to the community. • At “First follow-up”: about 11 months after discharge to the community. • At “Second follow-up”: about 24 months after discharge to the community.

24. Section B: MFP Participants to be Interviewed Baseline interviews are administered to all MFP participants in each state who enter the program prior to December 2016. Follow-up interviewers must be attempted for everyone who receives a baseline interview., If a program participant does not complete a baseline interview, we will still attempt to complete their first follow-up survey.

25. Section C: Assisted and Proxy Interviews Participants are the best judge of their experiences and they should be allowed to respond when possible. However, there are instances when it may be necessary to conduct an assisted or proxy interview. The following situations may warrant a change in respondent: • The participant wants to do the interview, but the interviewer thinks that he or she will not be able to understand the questions. • The participant requests that a proxy complete the interview for them. • A family member or informant indicates that the participant cannot complete the interview him or herself.

26. When Is a Proxy or Assisted Interview Necessary? If it is not possible for the program participant to complete the interview: • The participant can be assisted by a friend or family member to complete the survey (i.e., an “assisted” interview). • The interview can be conducted with a proxy who is very familiar with the participant’s situation and agrees to answer on the participant’s behalf.

27. Conducting a Proxy Interview • It’s important you select a proxy who is familiar with the program participant’s situation. • Ask the program participant him or herself if there is a person that can fill that role. • If the program participant is unable to identify someone, contact the case worker • When conducting a proxy interview, remember: • The objective is to obtain the program participant’s point of view, not the proxy’s • The question language will need to be modified. Become familiar with the QxQs to prepare for this situation • Proxy interviews should not be conducted for program participants who are deceased.

28. Section D: Information to be Collected The MFP QoL survey covers the following topics: • Participants’ freedom of choice and control over their lives • Satisfaction with housing, care, and life in general • Access to care and unmet needs • Feelings about being treated with adequate respect and dignity • Ability to engage in and enjoy community activities • Health status

29. Section E: Where the Survey will be Conducted The baseline interview should be conducted while the program participant is in the institution. Try to select a location where the respondent will be able to focus on the interview and where you can conduct the interview in private.

30. Section F: How the Surveys Will Be Conducted Baseline interviews MUST BE conducted in person. Multiple attempts should be made to contact respondents. In general, up to 15 attempts should be made. These attempts should be made at different times and on different days in order to find a time that the participant can complete the survey. After 15 attempts, the case should be reviewed to determine if it is viable. Participants who refuse to complete the survey should not be contacted for two weeks and reviewed to determine the best follow up approach. After that, experienced interviewers should attempt to interview the participant. If the participant refuses a second time, effort on the case should cease and it should be coded a final refusal.

31. Conclusion The MFP QoL Survey is a critical component in the effort to remove barriers to community living for people of all ages with disabilities and long-term illnesses. It represents an important step in working to ensure that all Americans have the opportunity to learn and develop skills, engage in productive work, choose where to live and participate in community life. Above all, it allows program participants to express their opinions and feelings on issues and topics directly related to the services they receive and how it affects their quality of life. Thank you for being a part of this important initiative.