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MONEY FOLLOWS THE PERSON QUALITY OF LIFE SURVEY
The Money Follows the Person Quality of Life Survey (QoL) was designed to measure quality of
life in seven domains: living situation, choice and control, access to personal care,
respect/dignity, community integration/inclusion, overall life satisfaction, and health status. The
target population for the survey includes people with disabilities and long-term illnesses who are
transitioning from institutionalized care to a care setting in the community. The survey is to be
administered to all participants at three points in time—just prior to transition, about 11 months
after transition, and about 24 months after transition.
The QoL takes approximately 15 to 20 minutes to complete. A few questions are asked only
before or after the transition, although most are asked at all three interviews. The survey is
intended to be administered by an interviewer, in person, and in a private setting (e.g., an office
in a nursing facility). Depending on the individual circumstances and the abilities of the
participant, however, a proxy respondent or an assisted interview may be necessary. A proxy
respondent is a person who answers the survey questions on the participant’s behalf. In an
assisted interview, a third person is present to help the participant answer questions. This survey
also has been translated into Spanish.
The development of the QoL survey was funded by the Centers for Medicare and Medicaid
Services (CMS) under contract HHSM-500-2005-00025I (0002). The majority of questions are
based on the Participant Experience Survey (Version 1.0 of Mental Retardation/Developmental
Disabilities 2003, MEDSTAT Group, Inc.), although a few items are drawn from other
instruments (ASK ME!, Cash and Counseling, National Core Indicator Survey (NCI), Quality of
Life Enjoyment and Satisfaction Questionnaire—Short Form, and the Nursing Home Consumer
Assessment of Health Plans Survey (NH CAHPS)).
The survey is free and available for use by the public; no one can use the survey for monetary
purposes. Users are expected to include the following citation:
Sloan, Matt, and Carol Irvin. Money Follows the Person Quality of Life Survey. Prepared for
Centers for Medicare and Medicaid Services (CMS). Washington, D.C.: Mathematica Policy
Research, Inc., 2007.
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MFP QUALITY OF LIFE SURVEY
RESPONDENT INFORMATION
Respondent Name: _______________________________________
Respondent Street Address: _______________________________________
Respondent City: _______________________________________
Respondent State: _______________________________________
Respondent ZIP Code: _______________________________________
Medicaid ID number: _______________________________________
Check here if the Sample Member is deceased and record date of death:
[_________] [_________] [__________] GO TO END
Month Day Year
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Hello, my name is _______ and I am from ________. I’m here to ask for your help with an important
study of Medicaid beneficiaries in the state of __________. The Quality of Life Survey, sponsored by the
Centers for Medicare & Medicaid Services (CMS) and the state of __________, is an essential part of an
evaluation of the Money Follows the Person Program, a program designed to help Medicaid beneficiaries
transition out of institutional care into the community. I’d like to ask you some questions about your
housing, access to care, community involvement, and your health and well-being. Results from the study
will help CMS and the state of __________ evaluate how well its programs are meeting the needs of
Medicaid beneficiaries like you.
Before we begin, let me assure you that all information collected will be kept strictly confidential and will
not be reported in any way that identifies you personally. Your answers will be combined with the
answers of others and reported in such a way that no single individual could ever be identified. Further,
the information collected will not be used by anyone to determine your continuing eligibility for Medicaid
benefits. We are collecting this information for research purposes only. However, I may be required to
report any instances of abuse or neglect that you tell me about to authorities. Your participation is
completely voluntary and if we come to any question you prefer not to answer, just tell me and we’ll move
on to the next one.
If you have any questions, please stop me and ask me. Also, please let me know if you do not understand
a question or if you would like me to repeat it.
MODULE 1: LIVING SITUATION
1. I’m going to ask you a few questions about the place you live. About how long have you lived
(here/in your home)?
Probe: Your best estimate is fine.
Interviewer: If respondent indicates less than 1 month, enter 1 month.
[_________] [__________] GO TO QUESTION 2
Years Months
DON’T KNOW...................................... DK
REFUSED ........................................... R
1a. Would you say you have lived here more than five years?
Yes ............................................................ 01
No .............................................................. 02
Don’t Know ................................................. DK
Refused...................................................... R
2. Interviewer: Does sample member live in a group home or nursing facility?
Yes ....................................................................... 01
No ........................................................................ 02
Don’t Know ........................................................... DK
Refused ............................................................... R
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3. Do you like where you live?
Yes ...................................................... 01
No ....................................................... 02
Sometimes........................................... 03
DON’T KNOW...................................... DK
REFUSED ........................................... R
4. Did you help pick (this/that) place to live?
Yes ...................................................... 01
No ....................................................... 02
DON’T KNOW...................................... DK
REFUSED ........................................... R
5. Do you feel safe living (here/there)?
Yes ...................................................... 01 GO TO QUESTION 6
No ....................................................... 02
DON’T KNOW...................................... DK GO TO QUESTION 6
REFUSED ........................................... R GO TO QUESTION 6
5a. How often do you feel unsafe living (here/there)?
Sometimes ................................................. 01
Most of the Time ......................................... 02
DON’T KNOW ............................................ DK
REFUSED .................................................. R
6. Can you get the sleep you need without noises or other disturbances where you live?
Yes ...................................................... 01
No ....................................................... 02
Sometimes........................................... 03
DON’T KNOW...................................... DK
REFUSED ........................................... R
MODULE 2: CHOICE AND CONTROL
7. Can you go to bed when you want?
Yes ...................................................... 01
No ....................................................... 02
Sometimes........................................... 03
DON’T KNOW...................................... DK
REFUSED ........................................... R
8. Can you be by yourself when you want to?
Yes ...................................................... 01
No ....................................................... 02
Sometimes........................................... 03
DON’T KNOW...................................... DK
REFUSED ........................................... R
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9. When you are at home, can you eat when you want to?
Yes ...................................................... 01
No ....................................................... 02
Sometimes........................................... 03
DON’T KNOW...................................... DK
REFUSED ........................................... R
10. Can you choose the foods that you eat?
Yes ...................................................... 01
No ....................................................... 02
Sometimes........................................... 03
DON’T KNOW...................................... DK
REFUSED ........................................... R
11. Can you talk on the telephone without someone listening in?
Yes ...................................................... 01
No ....................................................... 02
Sometimes........................................... 03
No access to telephone ........................ 04
DON’T KNOW...................................... DK
REFUSED ........................................... R
12. Can you watch TV when you want to?
Yes ...................................................... 01
No ....................................................... 02
Sometimes........................................... 03
No access to TV .................................. 04
DON’T KNOW...................................... DK
REFUSED ........................................... R
13. [AFTER TRANSITION ONLY] Some people get an allowance from the state to pay for the help or
equipment they need. Do you get an allowance like this?
Yes ...................................................... 01
No ....................................................... 02 GO TO QUESTION 14
DON’T KNOW...................................... DK GO TO QUESTION 14
REFUSED ........................................... R GO TO QUESTION 14
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13a. [AFTER TRANSITION ONLY] In the last 12 months, what help or equipment did you buy
with this allowance?
[Code all that apply]
Modified Home ........................................... 01
Modified Car ............................................... 02
Special Equipment ...................................... 03
Paid Help ................................................... 04
Transportation ............................................ 05
Household Goods ....................................... 06
Security Deposit ......................................... 07
Other .......................................................... 08
DON’T KNOW ............................................ DK
REFUSED .................................................. R
MODULE 3: ACCESS TO PERSONAL CARE
14. Now I’d like to ask you about some everyday activities, like getting dressed or taking a bath. Some
people have no problem doing these things by themselves. Other people need somebody to help
them. First, does anyone help you with things like bathing, dressing, or preparing meals?
Probe: Please include any help received by another person, including cueing or standby assistance.
Yes ...................................................... 01
No ....................................................... 02 GO TO QUESTION 15
DON’T KNOW...................................... DK GO TO QUESTION 15
REFUSED ........................................... R GO TO QUESTION 15
14a. Do any of these people get paid to help you?
Yes ............................................................ 01
No .............................................................. 02 GO TO QUESTION 15
Don’t Know ................................................. DK GO TO QUESTION 15
Refused...................................................... R GO TO QUESTION 15
14b. Do you pick the people who are paid to help you?
Yes ............................................................ 01
No .............................................................. 02
Don’t Know ................................................. DK
Refused...................................................... R
15. Do you ever go without a bath or shower when you need one?
Yes ...................................................... 01
No ....................................................... 02 GO TO QUESTION 16
DON’T KNOW...................................... DK GO TO QUESTION 16
REFUSED ........................................... R GO TO QUESTION 16
15a. How often do you go without a bath or shower when you need one? Would you say only
sometimes or most of the time?
Sometimes ................................................. 01
Most of the time .......................................... 02
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DON’T KNOW ............................................ DK
REFUSED .................................................. R
15b. Is this because there is no one there to help you?
Probe: Please include any help received by another person, including cueing or standby
assistance.
Yes............................................................. 01
No .............................................................. 02
DON’T KNOW ............................................ DK
REFUSED .................................................. R
16. Do you ever go without a meal when you need one?
Yes ...................................................... 01
No ....................................................... 02 GO TO QUESTION 17
DON’T KNOW...................................... DK GO TO QUESTION 17
REFUSED ........................................... R GO TO QUESTION 17
16a. How often do you go without a meal when you need one? Would you say only sometimes or
most of the time?
Sometimes ................................................. 01
Most of the Time ......................................... 02
DON’T KNOW ............................................ DK
REFUSED .................................................. R
16b. Is this because there is no one there to help you?
Probe: Please include any help received by another person, including cueing or standby
assistance.
Yes............................................................. 01
No .............................................................. 02
DON’T KNOW ............................................ DK
REFUSED .................................................. R
17. Do you ever go without taking your medicine when you need it?
Probes: Medicines are pills or liquids that are given to you by a doctor to help you feel better.
Yes ...................................................... 01
No ....................................................... 02 GO TO QUESTION 18
DON’T KNOW ..................................... DK GO TO QUESTION 18
REFUSED ........................................... R GO TO QUESTION 18
17a. How often do you go without taking your medicine when you need it? Would you say only
sometimes or most of the time?
Sometimes ................................................. 01
Most of the Time ......................................... 02
DON’T KNOW ............................................ DK
REFUSED .................................................. R
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17b. Is this because there is no one there to help you?
Probe: Please include any help received by another person, including cueing or standby
assistance.
Yes............................................................. 01
No .............................................................. 02
DON’T KNOW ............................................ DK
REFUSED .................................................. R
18. Are you ever unable to use the bathroom when you need to?
Yes ...................................................... 01
No ....................................................... 02 GO TO QUESTION 19
DON’T KNOW ..................................... DK GO TO QUESTION 19
REFUSED ........................................... R GO TO QUESTION 19
18a. How often are you unable to use the bathroom when you need to? Would you say only
sometimes or most of the time?
Sometimes ................................................. 01
Most of the Time ......................................... 02
DON’T KNOW ............................................ DK
REFUSED .................................................. R
18b. Is this because there is no one there to help you?
Probe: Please include any help received by another person, including cueing or standby
assistance.
Yes............................................................. 01
No .............................................................. 02
DON’T KNOW ............................................ DK
REFUSED .................................................. R
19. [AFTER TRANSITION ONLY] Have you ever talked with a case manager or support coordinator
about any special equipment or changes to your home that might make your life easier?
Probe: Equipment means things like wheelchairs, canes, vans with lifts, and automatic door opener.
Yes ...................................................... 01
No ....................................................... 02 GO TO QUESTION 20
DON’T KNOW...................................... DK GO TO QUESTION 20
Not Applicable ..................................... N/A GO TO QUESTION 20
REFUSED ........................................... R GO TO QUESTION 20
19a. [AFTER TRANSITION ONLY] What equipment or changes did you talk about?
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DON’T KNOW ............................................ DK
REFUSED .................................................. R
19b. [AFTER TRANSITION ONLY] Did you get the equipment or make the changes you needed?
Yes ............................................................ 01
No .............................................................. 02
In Process .................................................. 03
DON’T KNOW ............................................ DK
REFUSED .................................................. R
20. [AFTER TRANSITION ONLY] Please think about all the help you received during the last week
around the house like cooking or cleaning. Do you need more help with things around the house
than you are now receiving?
Yes ...................................................... 01
No ....................................................... 02
DON’T KNOW...................................... DK
REFUSED ........................................... R
21. [AFTER TRANSITION ONLY] During the last week, did any family member or friends help you with
things around the house?
Yes ...................................................... 01
No ....................................................... 02 GO TO QUESTION 22
DON’T KNOW...................................... DK GO TO QUESTION 22
REFUSED ........................................... R GO TO QUESTION 22
21a. [AFTER TRANSITION ONLY] Please think about all the family members and friends who
help you. About how many hours did they spend helping you yesterday?
Probe: Your best estimate is fine.
Interviewer: if less than one hour, enter 1 hour.
[_________]
Hours
DON’T KNOW ............................................ DK
REFUSED .................................................. R
MODULE 4: RESPECT AND DIGNITY
Note: If Q14 = No, DK or R GO TO QUESTION 27
Interviewer: For questions in this module, refer to your state’s policy on reporting any suspected incidents
of abuse and neglect. For this survey, record only reports of current abuse.
22. You said that you have people who help you. Do the people who help you treat you the way you
want them to?
Yes ...................................................... 01 GO TO QUESTION 23
No ....................................................... 02
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DON’T KNOW...................................... DK GO TO QUESTION 23
REFUSED ........................................... R GO TO QUESTION 23
22a. How often do they not treat you the way you want them to? Would you say only sometimes or
most of the time?
Sometimes ................................................. 01
Most of the Time ......................................... 02
DON’T KNOW ............................................ DK
REFUSED .................................................. R
23. Do the people who help you listen carefully to what you ask them to do?
Yes ...................................................... 01 GO TO QUESTION 24
No ....................................................... 02
DON’T KNOW...................................... DK GO TO QUESTION 24
REFUSED ........................................... R GO TO QUESTION 24
23a. How often do they not listen to you? Would you say only sometimes or most of the time?
Sometimes ................................................. 01
Most of the time .......................................... 02
DON’T KNOW ............................................ DK
REFUSED .................................................. R
24. [Optional] Have you ever been physically hurt by any of the people who help you now?
Probe: Physically hurt means someone could have pushed, kicked, or slapped you.
Yes ...................................................... 01
No ....................................................... 02 GO TO QUESTION 25
DON’T KNOW...................................... DK GO TO QUESTION 25
REFUSED ........................................... R GO TO QUESTION 25
24a. [Optional] What happened when the people who help you now physically hurt you?
DON’T KNOW ............................................ DK
REFUSED .................................................. R
24b. [Optional] How many times have you been physically hurt by the people who help you now?
Probe: Your best guess is fine.
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[_________]
Times
DON’T KNOW ............................................ DK
REFUSED .................................................. R
25. [Optional] Are any of the people who help you now mean to you or do they yell at you?
Probe: Do they treat you in a way that makes you feel bad or do they hurt your feelings?
Yes ...................................................... 01
No ....................................................... 02 GO TO QUESTION 26
DON’T KNOW...................................... DK GO TO QUESTION 26
REFUSED ........................................... R GO TO QUESTION 26
25a. [Optional] How often are they mean to you? Would you say only sometimes or most of the
time?
Sometimes ................................................. 01
Most of the Time ......................................... 02
DON’T KNOW ............................................ DK
REFUSED .................................................. R
26. [Optional] Have any of the people who help you now ever taken your money or things without
asking first?
Yes ...................................................... 01
No ....................................................... 02 GO TO QUESTION 27
DON’T KNOW...................................... DK GO TO QUESTION 27
REFUSED ........................................... R GO TO QUESTION 27
26a. [Optional] How many times have they taken your money or things without asking first?
Probe: Your best guess is fine.
[_________]
Times
DON’T KNOW ............................................ DK
REFUSED .................................................. R
MODULE 5: COMMUNITY INTEGRATION AND INCLUSION
27. I’d like to ask you a few questions about things you do. Can you see your friends and family when
you want to see them?
Interviewer: Code “yes” if respondent indicates that they have either gone to see friends or family or
that friends and family have come to visit them.
Yes ...................................................... 01
No ....................................................... 02 GO TO QUESTION 28
DON’T KNOW...................................... DK GO TO QUESTION 28
REFUSED ........................................... R GO TO QUESTION 28
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27a. How often do you see your friends and family when you want to see them? Would you say
only sometimes or most of the time?
Sometimes ................................................. 01
Most of the Time ......................................... 02
DON’T KNOW ............................................ DK
REFUSED .................................................. R
28. Can you get to the places you need to go, like work, shopping, or the doctor’s office?
Yes ...................................................... 01
No ....................................................... 02 GO TO QUESTION 29
DON’T KNOW...................................... DK GO TO QUESTION 29
REFUSED ........................................... R GO TO QUESTION 29
28a. How often do you get to the places you need to go, like work, shopping, or the doctor’s
office? Would you say only sometimes or most of the time?
Sometimes ................................................. 01
Most of the Time ......................................... 02
DON’T KNOW ............................................ DK
REFUSED .................................................. R
29. Is there anything you want to do outside [the facility/your home] that you can’t do now?
Yes ...................................................... 01
No ....................................................... 02 GO TO QUESTION 30
DON’T KNOW...................................... DK GO TO QUESTION 30
REFUSED ........................................... R GO TO QUESTION 30
29a. What would you like to do that you don’t do now?
DON’T KNOW ............................................ DK
REFUSED .................................................. R
29b. What do you need to do these things?
DON’T KNOW ............................................ DK
REFUSED .................................................. R
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30. When you go out, can you go by yourself or do you need help?
Go out Independently ........................... 01 GO TO QUESTION 31
Need Help ........................................... 02
DON’T KNOW...................................... DK GO TO QUESTION 31
REFUSED ........................................... R GO TO QUESTION 31
30a. Please think about all the help you received during the last week with getting around the
community, such as shopping and going to a doctor’s appointment, do you need more help
getting around than you are receiving?
Yes ............................................................ 01
No .............................................................. 02
DON’T KNOW ............................................ DK
REFUSED .................................................. R
31. [AFTER TRANSITION ONLY] Are you working for pay right now?
Probe: Do you get any money for doing work?
Yes ...................................................... 01 GO TO QUESTION 32
No ....................................................... 02
DON’T KNOW...................................... DK GO TO QUESTION 32
REFUSED ........................................... R GO TO QUESTION 32
31a. [AFTER TRANSITION ONLY] Do you want to work for pay?
Yes............................................................. 01
No .............................................................. 02
DON’T KNOW ............................................ DK
REFUSED .................................................. R
32. [AFTER TRANSITION ONLY] Are you doing volunteer work or working without getting paid?
Probe: Are you doing work but not getting any money for it?
Yes ....................................................... 01 GO TO QUESTION 33
No ........................................................ 02
DON’T KNOW ...................................... DK GO TO QUESTION 33
REFUSED ............................................ R GO TO QUESTION 33
32a. [AFTER TRANSITION ONLY] Would you like to do volunteer work or work without getting
paid?
Probe: would you like to do work without getting paid for it?
Yes ............................................................ 01
No .............................................................. 02
DON’T KNOW ............................................ DK
REFUSED .................................................. R
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33. I’d like to ask you a few questions about how you get around. Do you go out to do fun things in your
community?
Probe: These are things that you enjoy such as going to church, the movies or shopping?
Yes ...................................................... 01
No ....................................................... 02
DON’T KNOW...................................... DK
REFUSED ........................................... R
34. When you want to go somewhere, can you just go, do you have to make some arrangements, or do
you have to plan many days ahead and ask people for help?
Decide and Go ..................................... 01
Plan Some .......................................... 02
Plan Many Days Ahead ........................ 03
DON’T KNOW ..................................... DK
REFUSED ........................................... R
N/A…………………………………………NA
35. Do you miss things or have to change plans because you don’t have a way to get around easily?
Probe: Do you have to miss things because it is hard for you to get there?
Yes ...................................................... 01
No ....................................................... 02
Sometimes........................................... 03
DON’T KNOW...................................... DK
REFUSED ........................................... R
36. Is there any medical care, such as a medical treatment or doctor’s visits, which you have not
received or could not get to within the past month?
Probe: The medical care includes doctor visits or medical treatments that you may need.
Yes ...................................................... 01
No ....................................................... 02
DON’T KNOW...................................... DK
REFUSED ........................................... R
MODULE 6: SATISFACTION
37. Taking everything into consideration, during the past week have you been happy or unhappy with
the help you get with things around the house or getting around your community?
Happy .................................................. 01 GO TO QUESTION 37a
Unhappy .............................................. 02 GO TO QUESTION 37b
DON’T KNOW...................................... DK GO TO QUESTION 38
REFUSED ........................................... R GO TO QUESTION 38
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37a Would you say you are a little happy or very happy?
A little happy ............................................... 01 GO TO QUESTION 38
Very happy ................................................ 02 GO TO QUESTION 38
Don’t Know ................................................. DK GO TO QUESTION 38
Refused...................................................... R GO TO QUESTION 38
37b Would you say you are a little unhappy or very unhappy?
A little unhappy ........................................... 01
Very unhappy ............................................. 02
Don’t Know ................................................. DK
Refused...................................................... R
38. Taking everything into consideration, during the past week have you been happy or unhappy with
the way you live your life?
Happy .................................................. 01 GO TO QUESTION 38a
Unhappy .............................................. 02 GO TO QUESTION 38b
DON’T KNOW ..................................... DK GO TO QUESTION 39
REFUSED ........................................... R GO TO QUESTION 39
38a. Would you say you are a little happy or very happy?
A little happy ............................................... 01 GO TO QUESTION 39
Very happy ................................................ 02 GO TO QUESTION 39
Don’t Know ................................................. DK GO TO QUESTION 39
Refused...................................................... R GO TO QUESTION 39
38b. Would you say you are a little unhappy or very unhappy?
A little unhappy ........................................... 01
Very unhappy ............................................. 02
Don’t Know ................................................. DK
Refused ...................................................... R
MODULE 7: HEALTH STATUS
39. During the past week have you felt sad or blue?
Yes ...................................................... 01
No ....................................................... 02 GO TO QUESTION 40
DON’T KNOW...................................... DK GO TO QUESTION 40
REFUSED ........................................... R GO TO QUESTION 40
39a. How often have you felt sad and blue? Would you say only sometimes or most of the time?
Sometimes ................................................. 01
Most of the Time ......................................... 02
DON’T KNOW ............................................ DK
REFUSED .................................................. R
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40. During the past week have you felt irritable?
Probe: Irritable means grumpy or easily upset about things in your life.
Yes ...................................................... 01
No ....................................................... 02 GO TO QUESTION 41
DON’T KNOW...................................... DK GO TO QUESTION 41
REFUSED ........................................... R GO TO QUESTION 41
40a. How often have you felt irritable? Would you say only sometimes or most of the time?
Probe: Irritable means grumpy or easily upset about things in your life.
Sometimes ................................................. 01
Most of the Time ......................................... 02
DON’T KNOW ............................................ DK
REFUSED .................................................. R
41. During the past week have you had aches and pains?
Yes ...................................................... 01
No ....................................................... 02 GO TO QUESTION 42
DON’T KNOW...................................... DK GO TO QUESTION 42
REFUSED ........................................... R GO TO QUESTION 42
41a. How often do you have aches and pain? Would you say only sometimes or most of the time?
Sometimes ................................................. 01
Most of the Time ......................................... 02
DON’T KNOW ............................................ DK
REFUSED .................................................. R
CLOSEOUT
42. Those are all the questions I have you now. We would like to talk with you in about a year or so to
find out how you are doing. In case we have trouble reaching you, what is the name, address, and
phone number of a close relative or friend who is not living with you and is likely to know your
location in the future? For example, a mother, father, brother, sister, aunt, uncle, or close friend.
No Contact Available ........................... 01 GO TO QUESTION 43
Contact Available ................................. 02
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42a. Contact Name: _________________________________________
42b. Contact Street Address: _________________________________________
42c. Contact City: _________________________________________
42d. Contact State: _________________________________________
42e. Contact ZIP _________________________________________
42f. Contact Phone: _________________________________________
43. Interviewer: Did you complete the interview with the sample member alone, the sample member who
was assisted by another, or with a proxy?
Sample Member Alone .......................................... 01
Sample Member with Assistance ........................... 02
Proxy .................................................................... 03
44. Interviewer: Record date the interview was completed:
[_________] [_________] [__________]
Month Day Year
END INTERVIEW