ecr survey

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MPR Reference No.:  6037-300





Cash and Counseling Nonparticipation Study
Client

Draft Questionnaire

November 3, 2004
































INTRODUCTION/SCREENER


S1.		Hello.  My name is [INTERVIEWER NAME] from Mathematica Policy Research, Inc. in Princeton, New Jersey.  We’re calling New Jersey residents who are eligible to receive Medicaid personal care services at home.

	May I please speak with [CLIENT NAME]?

		SPEAKING TO CLIENT	01       GO TO S2
		CLIENT COMES TO PHONE	02
		CLIENT TEMPORARILY UNAVAILABLE	03       GO TO S7
		CLIENT PHYSICALLY/COGNITIVELY
		UNABLE TO SPEAK ON THE PHONE	04       GO TO S3
		CLIENT IN A NURSING HOME
		OR HOSPITAL	05       GO TO END 2
		CLIENT DECEASED	06       GO TO END 3


S1a.	Hello.  My name is [INTERVIEWER NAME] from Mathematica Policy Research, Inc. in Princeton, New Jersey.  We’re calling New Jersey residents who are eligible to receive Medicaid personal care services at home.


S2.	We would like to speak to the person who makes the decisions about the Medicaid personal care services you receive at home, or to someone who would make decisions about benefits you might be eligible for.  Would you make those decisions, or would someone else?

		CLIENT ONLY	01       GO TO S8
		SOMEONE ELSE	02       GO TO S5
		MORE THAN ONE PERSON	03


S2a.	Who has primary responsibility for making these decisions?

INTERVIEWER:	IF RESPONDENT HAS TROUBLE DECIDING AND CLIENT IS ONE OF THE DECISION MAKERS, CHOOSE CLIENT.

	
		CLIENT	01        GO TO S8
		SOMEONE ELSE	02        GO TO S5


S3.	We would like to speak to the person who makes the decisions about the Medicaid personal care services [CLIENT] receives at home, or to someone who would make decisions about benefits [CLIENT] might be eligible for.  Would [CLIENT] make those decisions or would someone else?

		CLIENT ONLY	01        GO TO S4
		RESPONDENT, NOT CLIENT	02
		SOMEONE ELSE	03
		MORE THAN ONE PERSON	04

S3a.	Who has primary responsibility for making these decisions?

INTERVIEWER:	IF RESPONDENT HAS TROUBLE DECIDING AND CLIENT IS ONE OF THE DECISION MAKERS, CHOOSE CLIENT.

		CLIENT	01
		RESPONDENT, NOT CLIENT	02
		SOMEONE ELSE	03


S4.	Since [CLIENT] makes (his/her) own decisions about Medicaid personal care services, but is unable to speak on the phone, we would like to talk to the person who knows the most about the services [CLIENT] may receive at home or benefits [CLIENT] might be eligible for.  Would that be you or someone else?

		RESPONDENT	01
		SOMEONE ELSE	02
		DON’T KNOW	d
		REFUSED	r


S5.	What is (your/this person’s) name?
		NAME:		

S5a.	How (are you/is [he/she]) related to ([CLIENT]/you)?

	PROBE IF RESPONDENT IS CLIENT’S CHILD:  (Are you/Is [he/she]) [CLIENT]’s (daughter or daughter-in-law/son or son-in-law)?

		SPOUSE	01
		MOTHER	02
		FATHER	03
		DAUGHTER	04
		DAUGHTER-IN-LAW	05
		SON	06
		SON-IN-LAW	07
		SISTER/SISTER-IN-LAW	08
		BROTHER/BROTHER-IN-LAW	09
		GRANDPARENT	10
		GRANDCHILD	11
		OTHER RELATIVE	12
		OTHER NON-RELATIVE	13
		DON’T KNOW	d
		REFUSED	r


S5b.	(Do you/does [he/she]) live with [CLIENT]?

		YES	01
		NO	00


INTERVIEWER:  IF TALKING TO DESIRED RESPONDENT NOW 
(S3(a)=02 OR S4 = CODE 01), GO TO S8.  ELSE ASK S6.


S6.	Is [NAME IN S5] there now?

		YES	01
		NO	00       GO TO S7


S6a.	Would it be possible to speak with [NAME IN S5]?

		YES	01       GO TO S1a
		NO	00

S7.	When would be a good time to reach [CLIENT/NAME IN S5]?

	RECORD TIME OF DAY.

		|     |     |:|     |     |  AM/PM


S7a.	What would be the best phone number to reach [CLIENT/NAME IN S5] at?

	RECORD PHONE NUMBER.

		(|     |     |     |) - |     |     |     | - |     |     |     |     |
		AREA CODE

		SAME NUMBER DIALED	01
		REFUSED	r
		DON’T KNOW	d


GO TO END 1


S8.	According to our records, you are currently eligible to receive Medicaid personal care services at home.  Have you received any help like that from Medicaid in the last two weeks?

	PROBE:	Has a home health aid or personal care attendant come to your home to help you bathe, get dressed, fix meals, clean, shop, or other things like that?

	PROBE:	Do not include Medicaid skilled nursing services.

		YES	01       GO TO A1
		NO	00
		DON’T KNOW	d
		REFUSED	r


S8a.	Have you had help like that from Medicaid at any time during the last month?

YES	01      GO TO A1
		NO	00
		DON’T KNOW	d
		REFUSED	r

S9.	Sometimes people try to get help with personal care, but none is available.  During the last month, did you try to get help like that through an agency or from someone else who was paid? 

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r


S9a.	Why didn’t you receive those services (or try to obtain services) during the last month?

		NO LONGER ELIGIBLE FOR MEDICAID 
		PERSONAL CARE SERVICE	01       GO TO END 4
		CLIENT WAS/IS IN A NURSING HOME	02
		AGENCY WAS UNABLE/UNWILLING 
		TO PROVIDE A WORKER	03
		CLIENT’S DECISION (NO LONGER WANTED)	04
		NOT AT HOME ALL OR MOST OF 
		THE TIME RECENTLY	05
		OTHER (SPECIFY)	96
				
		DON’T KNOW	d
		REFUSED	r


END 1:  IF UNAVAILABLE

I’ll try calling back at another time.  Thank you for your time.


END 2:  IF CLIENT IS IN HOSPITAL, NURSING HOME, OR RESPONDENT REFUSES

Thank you, I’ll make note of that.  I appreciate your time.  Goodbye.


END 4:  IF CLIENT NOT ELIGIBLE FOR MEDICAID

We are only interviewing people who are eligible for Medicaid personal care services right now.  Thank you for your time. Good-bye.

Begin Time:  |     |     |:|     |     | AM/PM

A.  AWARENESS OF CASH AND COUNSELING


A1.	First, I would like to ask you whether you have ever heard of a program called Personal Preference.  It is a Medicaid program for people who need personal care services.  Have you ever heard of it?

	PROBE IF NO/DK/REF:	People who participate in Personal Preference receive a monthly allowance to manage their own personal care services.  Many people use the allowance to hire family members and friends to provide personal care.  Have you ever heard of this program?

	PROBE:	Personal care includes help with bathing, dressing, preparing meals, transportation, things around the house and community, and other daily activities.

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r


A1a.	Have you ever participated in this program?

	PROBE IF DK:	Have you ever received a monthly allowance so that you can manage your own care?

		YES	01        GO TO ENDER

		NO	00        GO TO B4a
		DON’T KNOW	d
		REFUSED	r



ENDER.	We are only interviewing people who have not participated in Personal Preference.  Thank you very much for your time and interest.  Good-bye.


B.  LEVEL OF INTEREST IN CASH AND COUNSELING


B1.
INTERVIEWER:  IF HAS NOT HEARD OF PERSONAL PREFERENCE		       GO TO B2


B2.	Now, I am going to read a short description of Personal Preference, and ask you if it sounds interesting.  Personal Preference provides an allowance along with training and advice to let participants manage their own personal care services, and to buy supplies and equipment to help them be more independent.  Participants receive the allowance instead of agency personal care services.  Many people decide to use the allowance to pay family members and friends to help them with bathing, preparing meals, or doing other things around the house.  Each participant’s allowance is based on the number of hours of care they qualify for.

	Now that you have heard a little about Personal Preference, how interested in the program are you?  Would you say you are . . .

		Very interested (in this program),	01
		Somewhat interested,	02
		Not very interested, or	03
		Not at all interested?	04
		DON’T KNOW	d
		REFUSED	r

B3.	Next I am going to describe some specific features of Personal Preference.  Please tell me whether each feature sounds very appealing, somewhat appealing, somewhat unappealing, or very unappealing to you.

	PROBE:	Is this a very appealing, somewhat appealing, somewhat unappealing, or a very unappealing feature?

	


VERY
APPEALING
SOMEWHAT
APPEALING
SOMEWHAT
UNAPPEALING
VERY
UNAPPEALING
DON’T
KNOW
    a. Receiving an allowance every month instead of receiving agency personal care services	
01
02
03
04
d
    b. Being able to hire family members, friends, or neighbors to help you with your personal care	
01
02
03
04
d
    c. Deciding whom to hire, how much to pay, when they would work, and what they would do	
01
02
03
04
d
    d. How appealing would it be to choose a family member or friend to help make those decisions?
01
02
03
04
d
    e. How appealing would it be to be able to use the allowance to buy personal care supplies, such as adult diapers or disposable gloves?	
01
02
03
04
d
    f. (How appealing would it be…) to be able to use the allowance to buy special equipment to help you around the house, such as a microwave oven?	
01
02
03
04
d
    g. (How appealing would it be…) to be able to use the allowance to modify your home, such as installing grab bars for the bathroom?	
01
02
03
04
d
    h. (How appealing would it be…) to be able to ask program consultants for training and advice about how to manage the allowance	
01
02
03
04
d
    i. (How appealing would it be…) to be able to ask program bookkeepers to write checks for the people you pay and the things you buy with the allowance	
01
02
03
04
d

INTERVIEWER:  IF B2 = 03 OR 04 (NOT (VERY) INTERESTED), ASK B4. ELSE GO TO E1.


B4.	Earlier, you told me that you were not (very) interested in the Personal Preference program.  What is the main reason that you are not interested?

		                                                                   CIRCLE ONE ONLY
		CHANGED MIND/IS INTERESTED SINCE
		HEARING MORE ABOUT PROGRAM	01
		SATISFIED WITH CURRENT
		ARRANGEMENTS	02
		DOESN’T WANT TO CHANGE	03
		WOULD NOT HAVE ANYONE TO HIRE TO
		PROVIDE PERSONAL CARE	04
		PROGRAM SOUNDS LIKE TOO MUCH
		RESPONSIBILITY/TOO DIFFICULT	05
		THE ALLOWANCE IS TOO SMALL	06
		OTHER (SPECIFY)	96
			
		DON’T KNOW	d
		REFUSED	r


INTERVIEWER:	GO TO E1. 


B4a.	How did you hear of Personal Preference?

	PROBE:  Does anything come to mind?

	PROBE:  Any other ways?

		                                                            CIRCLE ALL THAT APPLY
		FAMILY MEMBER	01
		AGENCY OR AIDE THAT PROVIDES
		YOUR MEDICAID PERSONAL CARE OR
		WAIVER SERVICES	02
		CASE MANAGER	03
		FRIEND	04
		NEWS STORY (E.G., ON TV, RADIO, WEB)	05
		DIRECT MAILING (E.G., LETTER OR
		BROCHURE FROM GOVERNOR)	06
		OTHER (SPECIFY)	96
			
		DON’T KNOW/DON’T REMEMBER	d
		REFUSED	r


B5.	Please tell me which statement best describes your reaction when you first heard about Personal Preference.  Were you. . .

	PROBE:	Please think about the first time you heard about the program.

		Very interested in participating,	01
		Somewhat interested in participating,	02
		Not very interested in participating, or	03
		Not at all interested in participating?	04
		DON’T KNOW/DON’T REMEMBER	d
		REFUSED	r


B6.	After you first heard about Personal Preference, did you try to get more information about the program?

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r
B7.	Now I’m going to ask you about the ways you might have tried to get information about Personal Preference.  Please tell me whether you tried any of them.

	PROBE:	Did you search for information in other ways?  Is there anything else?

	Did you . . .

YES
NO
DON’T
KNOW
REFUSED
    a. Call, e-mail, or write to the program to get more information?	
01
00
d
r
    b. Look on the World Wide Web or the internet site for Personal Preference?	
01
00
d
r
    c. Talk to the agency or aide that normally provides your Medicaid personal care or waiver services?	
01
00
d
r
    d. Talk to your Medicaid case manager?	
01
00
d
r
    e. Talk to a Medicaid beneficiary who was participating in the program?	
01
00
d
r
    f. Talk to a family member or friend?	
01
00
d
r
    g. Do something else?  (SPECIFY)	
01
00
d
r
		




		




		






B8.	Did you get the information you wanted from (this/any of these) source(s)?

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r


INTERVIEWER:	IF B7a=YES, ASK B9.
	ELSE GO TO INSTRUCTION BOX ABOVE B11.


B9.	I’m going to read you some types of information you may have received from the Personal Preference program itself.  Please tell me whether you received each type of information.  When you  contacted the program, did you receive . . .


CIRCLE YES OR NO FOR EACH

YES
NO
DON’T
KNOW
REFUSED
    a. Information by phone?	
01
00
d
r
	PROBE:	This includes someone calling you back or information from an automated system.




    b. Written materials such as a letter or brochure?	
01
00
d
r
    c. A video to watch about the program?
01
00
d
r
    d. Did a program staff member come to your home to explain the program?	
01
00
d
r
    e. Anything else?  (SPECIFY)	
01
00
d
r
		






INTERVIEWER:	IF ANY OF B9 = YES, ASK B10.
	ELSE GO TO INSTRUCTION BOX ABOVE B11.


B10.	In general, how useful was the information you received?  Would you say it was . . .

		Very useful,	01
		Somewhat useful,	02
		Not very useful, or	03
		Not at all useful?	04
		DON’T KNOW	d
		REFUSED	r




INTERVIEWER:  IF B7b = 1, ASK B11.  ELSE GO TO BOX BEFORE B12.


B11.	You mentioned that you visited the website for Personal Preference.  How useful was the information on the website?  Would you say it was . . .

		Very useful,	01
		Somewhat useful,	02
		Not very useful, or	03
		Not at all useful?	04
		DID NOT FIND THE NEEDED INFORMATION	05
		DON’T KNOW	d
		REFUSED	r


INTERVIEWER:  IF B7c OR B7d = 1, ASK B12.  ELSE GO TO C1.


B12.	You mentioned that your personal care agency, aide or case manager gave you information about Personal Preference.  Did this person say that it might be a good idea to participate in Personal Preference, a bad idea to participate in Personal Preference, or did they not offer an opinion?

		GOOD IDEA	01
		BAD IDEA	02
		NO OPINION	03
		DON’T KNOW	d
		REFUSED	r



C.  REASONS FOR NOT PARTICIPATING


Next, I’m going to ask you about the reasons you are not participating in Personal Preference.

C1.	Why did you decide not to participate in Personal Preference program?

	PROBE:	Could you be more specific please?

	PROBE:	Anything else?

		                                                               CIRCLE ALL THAT APPLY
		SATISFIED WITH CURRENT ARRANGEMENTS/	
		DOESN’T WANT TO CHANGE	01
		WOULD NOT HAVE ANYONE TO HIRE TO
		PROVIDE PERSONAL CARE	02
		PROGRAM SOUNDS LIKE TOO MUCH	
		RESPONSIBILITY	03
		INSUFFICIENT ALLOWANCE	04
		CASE WORKER/AGENCY DISCOURAGED	
		PARTICIPATION	05
		COULD NOT HIRE SPOUSE OR LEGALLY
		LIABLE RELATIVE	06
		FEAR OF LOSING MEDICAID	07
		FEAR OF LOSING NURSING CARE	08
		FEAR OF LOSING OTHER PUBLIC BENEFITS	09
		PROGRAM DECISION	10
		DIDN’T KNOW HOW TO GET	
		MORE INFORMATION	11
DID NOT THINK WOULD BE RECEIVING PERSONAL CARE SERVICES FOR
VERY LONG	12       GO TO E1
		OTHER (SPECIFY)	96
			
		DON’T KNOW	d
		REFUSED	r


INTERVIEWER:  IF C1 = 07, ASK C1a.  ELSE GO TO C2.

C1a.	If participating in Personal Preference would not affect your public benefits, would you be more interested in the program, or would your level of interest remain the same?

		MORE INTERESTED	01
		NO CHANGE/INTEREST THE SAME	03
		DON’T KNOW	d
		REFUSED	r


C2.	Who made, or helped you make, the decision not to participate in Personal Preference?

	PROBE:	Is there anyone else?

		                                                            CIRCLE ALL THAT APPLY
		CLIENT/SELF		01
		SPOUSE	02
		MOTHER	03
		FATHER	04
		SON		05
		DAUGHTER	06
		SON-IN-LAW	07
		DAUGHTER-IN-LAW	08	
		SISTER	09
		BROTHER	10
		DOCTOR	11
		AIDE	12
		CASE MANAGER	13
		PROGRAM REPRESENTATIVE	14
		OTHER FAMILY MEMBER (SPECIFY)	15
			
		OTHER (SPECIFY)	96
			
		DON’T KNOW	d
		REFUSED	r


D.  KNOWLEDGE OF PROGRAM FEATURES

D1.	Next, I’m going to ask you about what you think of the different program features.

	When you eventually decided not to participate in the Personal Preference program, were you aware . . .

	PROBE:	  When you eventually decided not to participate in the program.


CIRCLE YES OR NO FOR EACH

YES
NO
DON’T
KNOW
REFUSED
a.	that you would receive an allowance every month instead of receiving personal care services from an agency?	
01
00
d
r
b.	that the amount of the monthly allowance would be based on the number of hours of personal care that you qualify for?	
01
00
d
r
c.	that the monthly allowance could be used to pay family members, friends, neighbors, or other people of your choice, to help you with personal care?	
01
00
d
r
d.	that you would make decisions about whom to hire, how much to pay, when they would work, and what they would do?	
01
00
d
r
e.	that you could choose a family member or friend to help you make these decisions?	
01
00
d
r
f.	that the monthly allowance could be used to purchase personal care supplies such as adult diapers or disposable gloves?	
01
00
d
r
g.	that the monthly allowance could be used to purchase special equipment to help you around the house, such as a microwave oven?	
01
00
d
r
h.	that the monthly allowance could be used to make modifications to your home, such as installing grab bars for the bathroom?	
01
00
d
r
i.	that program consultants would be available for training and advice about how to manage the monthly allowance?	

	PROBE:	Consultants would help you decide things like whom to hire or how much to pay them.
01
00
d
r
j.	that program bookkeepers would be available to write checks to pay workers or make other purchases?	
01
00
d
r
	IF C1=07, CIRCLE ‘NO’ IN D1k WITHOUT ASKING.
k.	that signing up for the program would not affect your other Medicaid benefits, or any Supplemental Security Income (SSI) or food stamps you may receive?	
01
00
d
r

INTERVIEWER:	COUNT NUMBER OF “YES” RESPONSES.  
IF ALL 11=YES, GO TO D4
IF 8-10 YESES, GO TO D2A
IF 0-7 YESES, GO TO D3

INTERVIEWER:  IF D1a NOT YES, ASK D2a.

D2a.	If you knew that you would receive a monthly allowance instead of agency services, would you  be more interested in the Personal Preference program, less interested in the program, or would your interest remain the same?

		MORE INTERESTED	01
		LESS INTERESTED	02
		NO CHANGE/INTEREST THE SAME	03
		DON’T KNOW	d
		REFUSED	r


INTERVIEWER:  IF D1b NOT YES, ASK D2b.

D2b.	If the allowance were enough to let you buy about the same number of care hours you currently qualify for, would you be more interested in the Personal Preference program, less interested in the program, or would your interest remain the same?

		MORE INTERESTED	01
		LESS INTERESTED	02
		NO CHANGE/INTEREST THE SAME	03
		DON’T KNOW	d
		REFUSED	r


INTERVIEWER:  IF D1c NOT YES, ASK D2c.

D2c.	If you knew that you would be allowed to pay family members, friends, neighbors, or other people of your choice to help you with personal care, would you be more interested in the Personal Preference program, less interested in the program, or would your interest remain the same?

		MORE INTERESTED	01
		LESS INTERESTED	02
		NO CHANGE/INTEREST THE SAME	03
		DON’T KNOW	d
		REFUSED	r



INTERVIEWER:  IF D1d NOT YES, ASK D2d.

D2d.	If you knew that you could decide whom to hire, how much they would work and what they would do, would you be more interested in the Personal Preference program, less interested in the program, or would your interest remain the same?

		MORE INTERESTED	01
		LESS INTERESTED	02
		NO CHANGE/INTEREST THE SAME	03
		DON’T KNOW	d
		REFUSED	r


INTERVIEWER:  IF D1e NOT YES, ASK D2e.

D2e.	If you knew that you could have someone help you make decisions, would you be more interested in the Personal Preference program, less interested in the program, or would your interest remain the same?

		MORE INTERESTED	01
		LESS INTERESTED	02
		NO CHANGE/INTEREST THE SAME	03
		DON’T KNOW	d
		REFUSED	r


INTERVIEWER:  IF D1f NOT YES, ASK D2f.

D2f.	If you knew that you would be allowed to purchase personal care supplies with the allowance, would you be more interested in the Personal Preference program, less interested in the program, or would your interest remain the same?

	PROBE:	Care supplies such as adult diapers or disposable gloves.

		MORE INTERESTED	01
		LESS INTERESTED	02
		NO CHANGE/INTEREST THE SAME	03
		DON’T KNOW	d
		REFUSED	r

INTERVIEWER:  IF D1g NOT YES, ASK D2g.

D2g.	If you knew that you would be allowed to purchase special equipment to help you be more independent, would you be more interested in the Personal Preference program, less interested in the program, or would your interest remain the same?

	PROBE:	Special equipment such as an emergency response system, a touch lamp, or a microwave oven.

		MORE INTERESTED	01
		LESS INTERESTED	02
		NO CHANGE/INTEREST THE SAME	03
		DON’T KNOW	d
		REFUSED	r


INTERVIEWER:  IF D1h NOT YES, ASK D2h.

D2h.	If you knew that the monthly allowance could be used to make modifications to your home, would you be more interested in the Personal Preference program, less interested in the program, or would your interest remain the same?

	PROBE:	Modifications such as installing grab bars for the bathroom.

		MORE INTERESTED	01
		LESS INTERESTED	02
		NO CHANGE/INTEREST THE SAME	03
		DON’T KNOW	d
		REFUSED	r


INTERVIEWER:  IF D1i NOT YES, ASK D2i.

D2i.	If you knew that program consultants would be available to help you, would you be more interested in the Personal Preference program, less interested in the program, or would your interest remain the same?

		MORE INTERESTED	01
		LESS INTERESTED	02
		NO CHANGE/INTEREST THE SAME	03
		DON’T KNOW	d
		REFUSED	r

INTERVIEWER:  IF D1j NOT YES, ASK D2j.

D2j.	If you knew that bookkeepers would be available to help you, would you be more interested in the Personal Preference program, less interested in the program, or would your interest remain the same?

PROBE:  Bookkeepers to write checks to pay workers or make other purchases and to file payroll taxes for the people hired.

		MORE INTERESTED	01
		LESS INTERESTED	02
		NO CHANGE/INTEREST THE SAME	03
		DON’T KNOW	d
		REFUSED	r


INTERVIEWER:  IF D1k NOT YES, ASK D2k.

D2k.	If you knew your benefits would not be affected by participating in Personal Preference, would you be more interested in the program, less interested in the program, or would your interest remain the same?

		MORE INTERESTED	01
		LESS INTERESTED	02
		NO CHANGE/INTEREST THE SAME	03
		DON’T KNOW	d
		REFUSED	r


GO TO D4


D3.	If you knew that all the features I just mentioned would be available to you, would you be more interested in the Personal Preference program, less interested in the program, or would your interest remain the same?

	PROBE:	Features such as receiving an allowance instead of agency services, being able to pay family members or friends, being able to make decisions about hiring and firing, being able to purchase special equipment, having consultants available, and the program not affecting your other benefits.

		MORE INTERESTED	01
		LESS INTERESTED	02
		NO CHANGE/INTEREST THE SAME	03
		DON’T KNOW	d
		REFUSED	r


Attitudes About Paying Family

D4.	Have you ever had any interest in paying family or friends to provide care for you?

	PROBE:  Either now or earlier.

		YES	01       GO TO E1
		NO	00
		DON’T KNOW	d
		REFUSED	r


D5.	Can you tell me why you have no interest in paying family or friends to provide care for you?

		                                                            CIRCLE ALL THAT APPLY
		NO NEED (THEY WILL DO IT FOR FREE)	01
		TOO DIFFICULT TO KEEP TRACK	02
		DON’T KNOW HOW TO DO TAXES/
		REPORTING TO IRS	03
		DON’T KNOW HOW MUCH TO PAY	04
		WON’T BE ABLE TO PAY ENOUGH	05
		AFRAID CAREGIVERS WILL LOSE PUBLIC
		BENEFITS	06
		NO ONE AVAILABLE	07
	CONCERN THAT IT MAY CREATE PROBLEMS AMONG FAMILY MEMBERS/BE AWKWARD	08
		NEVER THOUGHT ABOUT IT/
		DIDN’T KNOW IT WAS AN OPTION	09
		DON’T KNOW	d
		REFUSED	r

E.  CURRENT USE OF PERSONAL CARE SERVICES


Living Arrangements

E1.	The (next/first) questions are about you and the people who help with your personal care.  First, I’m going to ask you about your living arrangements during the last two weeks.

	Do you live with others or do you live alone?

	PROBE :	W	e mean your permanent residence where you keep your belongings and receive your calls.

		LIVES WITH OTHERS	01
		LIVES ALONE	00       GO TO E3
		DON’T KNOW	d
		REFUSED	r


E2.	Including yourself, how many people live in your household?

	PROBE:	Live in the same household as you.

		|     |     |  PEOPLE

		DON’T KNOW	d
		REFUSED	r


E3.	(IF E1=00:  Even though you are living alone…)  
	Are you married at this time?

	PROBE:  To the best of your knowledge.

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r

Informal (Unpaid) Care

E4.	The next questions are about help you may have received during the last two weeks from people who are not paid to help you like family members, friends, and volunteers.  I will ask about paid helpers later.

	During the last two weeks, have you received help with personal care such as eating, bathing, or dressing, or help with routine health care, transportation, or things around the house or community from people who were not paid to help?  Please include your husband/wife, if married.

	PROBE:	Some other examples of personal care are help with getting out of bed, using the toilet, dressing, and brushing your hair or teeth.

	PROBE:	For example, a volunteer from a church or service organization.

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r


E5.	During the last two weeks, how many different family members, friends, or others who were not paid, helped you?  Please include your husband/wife, if married.

		|     |     |  NUMBER OF UNPAID HELPERS

		DON’T KNOW	d
		REFUSED	r


INTERVIEWER:  IF CLIENT LIVES ALONE (E1=0), GO TO E8.


E6.	During the last two weeks, did (this person/any of these [NUMBER FROM E5] people) live in the same household as you?

	PROBE:	The family members, friends, or others who helped without pay.

		YES	01
		NO	00       GO TO E8
		DON’T KNOW	d
		REFUSED	r


	INTERVIEWER:  IF E5 = 1, GO TO E8.  ELSE, CONTINUE WITH E7.
E7.	How many of them lived in the same household as you during (the last/those) two weeks?

INTERVIEWER:  CODE WITHOUT ASKING IF KNOWN.

	PROBE:	The same household as you?

		|     |     |  UNPAID LIVE-IN HELPERS

		DON’T KNOW	d
		REFUSED	r


E8.	During a typical week, of the unpaid people who help you, who helps you the most with personal care, doing things around the house or community, transportation, or with routine health care at home?

	PROBE:  What is the name of this person?  

	INTERVIEWER:  CODE WITHOUT ASKING IF KNOWN.


		___________________________	FIRST NAME OF PERSON OR
			RELATIONSHIP


E8a.	How is [FILL FROM E8] related to you?

	PROBE IF PRIMARY INFORMAL CAREGIVER IS CLIENT’s CHILD:  Is [he/she] your [daughter or daughter-in-law/son or son-in-law]?

	INTERVIEWER:  CODE WITHOUT ASKING IF KNOWN.

		                                                               CIRCLE ONLY ONE
		SPOUSE	01
		MOTHER	02
		FATHER	03
		DAUGHTER	04
		DAUGHTER-IN-LAW	05
		SON	06
		SON-IN-LAW	07
		SISTER/SISTER-IN-LAW	08
		BROTHER/BROTHER-IN-LAW	09
		GRANDPARENT	10
		GRANDCHILD	11
		OTHER RELATIVE	12
		NON RELATIVE	13
		DON’T KNOW	d
		REFUSED	r


E9.	Is [FILL FROM E8] employed at the present time?

	PROBE:	Is (he/she) working for pay??

	PROBE:	Other than caring for you.

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r

INTERVIEWER:	IF S8 = CODE 00 (NO PAID HELP IN LAST TWO WEEKS) OR d OR r,
	GO TO E18.


Use of Paid Care

E10.	The next questions are about care you may have received from people who were paid to help during the last two weeks.  This could be someone employed by an agency, even if you did not have to pay the agency.

	How many different people who were paid, helped you with personal care, doing things around the house or community, transportation, or routine health care at home, during the last two weeks?

	PROBE:	Please include personal care, such as eating and bathing; doing things around the house or community, such as preparing meals, housework, laundry, shopping, yardwork, and transportation; and routine health care at home, such as taking medicine, checking blood pressure, and doing exercises.


		|     |     |  PAID HELPERS    

		NONE	00
		DON’T KNOW	d
		REFUSED	r

	
INTERVIEWER:  IF CLIENT LIVES ALONE (E1=00), GO TO E13.  ELSE GO TO E11.

E11.	Did (this person/any of these paid workers) live in the same household as you?

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r


E12.	How many live in the same household as you?

	PROBE:	Do not include people who come and stayed overnight just to help you, but who live elsewhere.

	PROBE:	During the last two weeks.

		|     |     |	NUMBER OF PAID WORKERS
				LIVING IN HOUSEHOLD

		NONE	00
		DON’T KNOW	d
		REFUSED	r


E13.	During the last two weeks, have you received help with personal care, such as eating and bathing, from a home-care-agency worker or others who are paid to help you?

	PROBE:	Some other examples of personal care are help with getting out of bed, using the toilet, dressing, and brushing your hair or teeth.

	PROBE:	Please include anyone you or your family hired privately.

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r


E14.	During the last two weeks, have you received help with transportation from home-care-agency workers or others who were paid to help?

	PROBE:	For example, a ride to the doctor or to shopping?

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r


E15.	During the last two weeks, have you received help with taking medicines or other routine health care at home, such as checking blood pressure and doing exercises, from home-care-agency workers or others who were paid to help?

	PROBE:	Please include filling pill trays, preparing syringes, and reminders to take your medicine.

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r


E16.	During the last two weeks, have you received help with things around the house or community, such as preparing meals, housework, shopping, and yardwork from home-care-agency workers or others who were paid to help?

	PROBE:	Some other examples of things around the house and community are paying bills and doing laundry.

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r


E17.	In the last two weeks, on how many days did you receive paid care from (this person/these people)?  

	PROBE:	Please include paid help with personal care, (or) transportation, (or) routine health care, or things around the house and community.

		|     |     |  DAYS IN LAST TWO WEEKS (1-14 RANGE)

		DON’T KNOW	d
		REFUSED	r
E17a.	During the last two weeks, about how many hours of paid care did you receive in all from (this person/these people)?

	PROBE:	Please include paid help with personal care, (or) transportation, (or) routine health care, or things around the house and community in the last two weeks.

	PROBE:	Your best estimate is fine.

	PROBE:	How many hours per day per person?

	INTERVIEWER:  HELP R TO CALCULATE TOTAL HOURS.

		1-5 hours	01
		6-10 hours	02
		11-15 hours	03
		16-20 hours	04
		21-25 hours	05
		26-30 hours	07
		31-35 hours	08
		36-45 hours	09
		46-60 hours	10
		61 or more hours	11
		DON’T KNOW	d
		REFUSED	r


E18.	IF NOT CURRENTLY RECEIVING PAID CARE (S8 = CODE 00, d, OR r), ADD AT BEGINNING:  	Although you have not had help recently. . .

	About how long have you been receiving paid help at home under Medicaid or some other public program?

	READ IF NECESSARY:	Has it been six months or less, more than six months but less than a year, one to three years, or more than three years?

	PROBE:	Please include paid help with personal care, things around the house or community, routine health care at home, or transportation.

	PROBE:	How long since you first became eligible?

		SIX MONTHS OR LESS	01
		MORE THAN SIX MONTHS TO LESS
		THAN ONE YEAR	02
		ONE TO THREE YEARS	03
		MORE THAN THREE YEARS	04
		DON’T KNOW	d
		REFUSED	r
E19.		During the last two weeks, have you received help from someone who is paid by you or your family, or by private insurance to help you at home with personal care, things around the house or community, routine health care at home or transportation?

	PROBE:	Private insurance includes insurance obtained through a current or former employer or union, or insurance bought on your own or through an association or trade group.

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r
F.  SATISFACTION WITH PAID CARE


INTERVIEWER:	THESE QUESTIONS SHOULD ASSESS THE DECISION MAKER’s SATISFACTION.  USE “you” IF RESPONDENT IS DECISION MAKER, ELSE USE CLIENT’s NAME.


F1.	IF NOT CURRENTLY RECEIVING PAID CARE (S8 = CODE 00, d, OR r), ADD AT BEGINNING:
	When you last received paid care . . .

	Please think about all the people who (are/were) paid to help you, including anyone from a home care agency.

	Are/Were you satisfied or dissatisfied with the times of day that people who (are/were) paid come/came to help you?

	IF CURRENTLY RECEIVING CARE (S8 = CODE 01), ADD:  If someone who is paid is with you now, please answer with a 1 for satisfied or 2 for dissatisfied.

		SATISFIED	01
		DISSATISFIED	02
		NEVER RECEIVED PAID CARE	03									        GO TO F8
		DON'T KNOW	d
		REFUSED	r


F1a.	Would that be very (satisfied/dissatisfied) or somewhat (satisfied/dissatisfied)?

	PROBE:	(Dis)Satisfied with the times of day.

		VERY	01
		SOMEWHAT	02
		DON’T KNOW	d
		REFUSED	r

F2.	Are/Were you satisfied or dissatisfied with the way people who are paid, carry out their tasks?

	PROBE:	For example, how satisfied are you that the work is done the way you want it.

		SATISFIED	01
		DISSATISFIED	02
		DON’T KNOW	d
		REFUSED	r


F2a.	Would that be very (satisfied/dissatisfied) or somewhat (satisfied/dissatisfied)?

	PROBE:	(Dis)Satisfied with the way they carried out their tasks.

		VERY	01
		SOMEWHAT	02
		DON’T KNOW	d
		REFUSED	r


F3.	Do/Did you feel that you were ever neglected or abused by people who were paid to help?

	PROBE:	For example, you may feel that you were left alone for a long time when you needed care, or that an important task was not done for a long time.

	PROBE:	People who were paid to help with personal care, doing things around the house or community, transportation, or routine health care at home.

	PROBE:	Please think about all the people who were paid to help.

	PROBE:	In your opinion.

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r

F3a.	Have you had that problem during the last six months?

	PROBE:	Being neglected or abused by people who were paid to help.
	

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r


F4.	Do/Did you ever feel that paid workers took money or other belongings without asking?

	PROBE:	People who were paid to help with personal care, doing things around the house or community, transportation, or routine health care at home.

	PROBE:	Please think about all the people who were paid to help.

	PROBE:	In your opinion.


		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r

F4a.	Have you had that problem during the last six months?

	PROBE:	  That paid workers took money or other belongings without asking.
.
	

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r
F5.	About how often (do/did) people who were paid, perform or complete the tasks they were supposed to?  Would you say . . .

	PROBE:	Tasks that (he/she/they) (are/were) supposed to perform.

	PROBE:	Please remember that all the information you give us will only be reported as averages for groups of people.

		Rarely,	01
		Sometimes,	02
		Usually, or	03
		Always?	04
		DON’T KNOW	d
		REFUSED	r


F6.	Other than what I just mentioned, have you been dissatisfied with any (other) aspects of your paid help since you have been receiving Medicaid personal care services at home?

	PROBE:	Any aspects other than neglect, abuse, theft or not completing tasks.

	PROBE:	Even if it’s only a problem sometimes.

	PROBE:	Even if the problem has been resolved.

	PROBE:	Even if it only pertains to one paid helper and not to the others.

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r


F7.	Please tell me about the problems you had, what aspects of the services you were unhappy with.

	PROBE:	Someone who was paid to help you with getting dressed or bathing, doing things around the house, or routine health care at home.

	PROBE:	Anything you tell me will be confidential and will not be reported to Medicaid or your aide.

	PROBE:	Can you be a little more specific please?

	PROBE:	What kinds of problems?

	PROBE:	Are there any other problems?  Are there any other aspects you are dissatisfied with?

		

		

		

		

	                                                                                                                        |     |     |

		NONE	00
		DON’T KNOW	d
		REFUSED	r


F7a.	Have you had that problem during the last six months?

	PROBE:	  [REPEAT VERBATIM RESPONSE FROM F7].
.
		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r

F8.	For the next question, please think about all the different types of help and any special equipment you use.

	Are you satisfied or dissatisfied overall with the arrangements for your care and equipment?

	PROBE:	Equipment for meal preparation or housekeeping, equipment to help with personal activities (a lift to help get out of bed, raised seat for the toilet, tub seat for bathing, wheelchair or scooter), equipment to help with communication, and equipment to help keep you safe.

	PROBE:	Please include any type of equipment, regardless of how long you have had it.

		SATISFIED	01
		DISSATISFIED	02
	DON’T KNOW	d
		REFUSED	r


F8a.	Would that be very (satisfied/dissatisfied) or somewhat (satisfied/dissatisfied)?

		VERY	01
		SOMEWHAT	02
		DON’T KNOW	d
		REFUSED	r

G.  UNMET NEEDS


G1.	Now, please think about all the help with personal care you received during the last two weeks from people who were either paid or unpaid.

	Do you need more help with personal care than you are currently receiving?

	PROBE:  Some examples of personal care include help with eating, getting out of bed, using the toilet, dressing, grooming, and bathing.

		YES	01
		NO	00
		HAVE NOT RECEIVED HELP RECENTLY	02
		DON’T KNOW	d
		REFUSED	r


G1a.	I understand you haven’t received any help recently with personal care.  Do you need help with that?

	PROBE:	At the present time?

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r


G2.	Now, please think about all the help with transportation you received during the last two weeks.

	Do you need more help getting rides or using public transportation than you are now receiving?

	PROBE:	Such as rides to go shopping or to a doctor’s office.

	PROBE:	Public transportation like a bus or taxi.

	PROBE:	Please think about both paid and unpaid help that you may have received.

		YES	01
		NO	00
		HAVE NOT RECEIVED HELP RECENTLY	02
		DON’T KNOW	d
		REFUSED	r

G2a.	I understand that you haven’t received any help recently with getting rides or using public transportation.  Do you need help with that?

	PROBE:	At the present time.

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r


G3.	Now, please think about all the help with routine health care you received at home during the last two weeks.

	Do/Did you need (help/more help than you are/were receiving with taking medicine or with other tasks, such as checking blood pressure or doing exercises?

	

	PROBE:	Please think about both paid and unpaid help that you may have received.

		YES	01
		NO	00
		HAVE NOT RECEIVED HELP RECENTLY	02
		DON’T KNOW	d
		REFUSED	r


G3a.	I understand that you haven’t received any help recently with routine health care.  Do you need help with that?

	PROBE:	At the present time.

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r

G4.	Now, please think about all the help with things around the house or community, besides transportation, you received during the last two weeks.

	Do you need more help with things around the house or community than you are now receiving?

	PROBE:	Some examples are preparing meals, doing housework, laundry, shopping, yardwork and other chores, and paying bills.

	PROBE:	Please think about both paid and unpaid help that you may have received.

		YES	01
		NO	00
		HAVE NOT RECEIVED HELP RECENTLY	02
		DON’T KNOW	d
		REFUSED	r


G4a.	I understand you haven’t received any help with things around the house or community recently.  Do you need help with that?

	PROBE:	At the present time?

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r


G5.	Do you need more supplies for your personal care than you can currently afford?

	PROBE:	For example, incontinence pads, adult diapers, ostomy and feeding bags, and disposable gloves.

	PROBE:	Please don’t count medicine.

	

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r




H.  HEALTH AND DEMOGRAPHICS

INTERVIEWER:  THESE QUESTIONS SHOULD ASSESS THE CLIENT’S CHARACTERISTICS.

Health and Functioning

H1.	Next, I have some questions about your overall health.

	First, relative to other people your age, how would you rate your health now?  Would you say it is . . .

		Excellent,	01
		Very good,	02
		Good,	03
		Fair, or	04
		Poor?	05
		DON’T KNOW	d
		REFUSED	r


H2.	Now, I would like to ask about how you get along day to day.

	During the past week, did any person help you get in or out of bed, did you do that by yourself, or did you not get out of bed at all?

	PROBE:	That’s since [DAY OF WEEK] of last week.

	PROBE:	For half or more of the times you got out of bed.

		SOMEONE HELPED	01       GO TO H3
		DID NOT NEED HELP	02
		DID NOT GET OUT OF BED AT ALL	03
		DON’T KNOW	d
		REFUSED	r


H2a.	Did someone usually stay nearby just in case you might need help getting in or out of bed?

	PROBE:	During the past week.

	PROBE:	For half or more of the times you got out of bed.

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r


H3.	The next question is about taking a full bath, including getting the towels and soap and drawing the water.  Please include taking a shower, bathing at a sink or basin, and bedbaths.

	During the last week, did any person help you bathe, did you do that by yourself, or were you not able to bathe at all?

	INTERVIEWER:			CODE 01 IF GOT HELP WITH ANY OF THE ACTIVITIES MENTIONED.

		SOMEONE HELPED	01       GO TO H4
		DID NOT NEED HELP	02
		DID NOT TAKE A BATH AT ALL	03
		DON’T KNOW	d
		REFUSED	r


H3a.	Did someone usually stay nearby just in case you might need help bathing?

	PROBE:	During the past week.

	PROBE:	For half or more of the times you bathed.

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r

H4.	During the past week, did any person help you get to or use the toilet or commode, did you do that by yourself, or did you not use the toilet or commode at all?

	PROBE:	Please include arranging clothes, transferring on and off the toilet or commode, and cleaning yourself.

	PROBE:	For example, a commode at your bedside.

		SOMEONE HELPED	01       GO TO H5
		DID NOT NEED HELP	02
		DID NOT USE THE TOILET	03
		DON’T KNOW	d
		REFUSED	r


H4a.	Did someone usually stay nearby just in case you might need help using the toilet or commode?

	PROBE:	During the past week.

	PROBE:	For half or more of the times you used the toilet or commode.

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r


H5.	At this time, do you have a chronic health condition or problem that requires medicine or other ongoing care?

	PROBE:	Any health condition or problem, whatever that means to you.

	PROBE:	By chronic, we mean a condition that a person will have for the rest of his or her life, such as diabetes or Alzheimer’s disease.

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r

H6.	INTERVIEWER:  CODE CLIENT’S GENDER WITHOUT ASKING IF KNOWN.

	IF NECESSARY:	First, would you mind telling me whether you are male or female?  I cannot be sure from your name alone.

		MALE	01
		FEMALE	02
		REFUSED	r


H7.	How old are you?

		|     |     |     |  CLIENT'S AGE

		DON’T KNOW	d
		REFUSED	r


H8.	Next, I’m going to ask you about your background.  Do you consider yourself to be of Hispanic origin, such as Mexican, Puerto Rican, Cuban, or other Spanish background?

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r


H9.	I’m going to read you a list of five race categories.  Please choose one or more races that you consider yourself to be.

	PROBE IF RESPONDS “HISPANIC” OR “LATINO”:  Would that be White Hispanic/Latino, African American Hispanic/Latino, or something else?

		                                                            CIRCLE ALL THAT APPLY
		White	01
		African American or Black	02
		American Indian or Alaska Native	03
		Asian	04
		Native Hawaiian or Other Pacific Islander	05
		Some other race (SPECIFY)	96
			
		DON'T KNOW	d
		REFUSED	r
H10.	Some people have a difficult time finding someone to help them because of the area in which they live.  The next questions are about where you live.

	Do you live on a farm or in the country?

	PROBE:	Do you live in a rural area?

		YES	01      GO TO H11
		NO	00
		DON’T KNOW	d
		REFUSED	r


H10a.	Do you live in a city?

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r


H11.	How hard is it to get public transportation from where you live?  Would you say . . .

	PROBE:	In your opinion.

	PROBE:	Do not include transportation services provided by an organization or agency, such as special vans or buses.

		Very hard,	01
		Somewhat hard, or	02
		Not hard at all?	03
		DON’T KNOW	d
		REFUSED	r


H12.	Would you say that you live in a high-crime neighborhood?

	PROBE:	In your opinion.

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r

Work and Education



H13.	Have you ever worked for pay?

	PROBE:	At any time during your life.

	PROBE:	Have you ever had a paid job?

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r


H14.	Do you work for pay now?

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r


H15.	Have you ever supervised another person (as part of your paid work) or (as part of) volunteer work you may have done?

	PROBE:	At any time during your life.

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r


H16.	Have you ever hired someone privately, for example someone to assist with housework, yardwork, or personal care (or to care for a child while you were working)?

		YES	01
		NO	00
		DON’T KNOW	d
		REFUSED	r

H17.	How many grades or years of schooling did you complete?

	INTERVIEWER:  COMPLETE a OR b.

	a.  DID NOT GRADUATE HIGH SCHOOL

		|     |     |  YEARS

		DON’T KNOW	d
		REFUSED	r


	b.  HIGH SCHOOL GRADUATE AND HIGHER

		HIGH SCHOOL GRADUATE OR GED	01
		SOME COLLEGE	02
		COLLEGE BACHELOR’S DEGREE	03
		COLLEGE GRADUATE WORK OR
		PROFESSIONAL DEGREE	04
		DON’T KNOW	d
		REFUSED	r


Those are all the questions I have for you.  Thank you for your time.  Good-bye.


End Time:  |     |     |:|     |     | AM/PM
MPR DOCUMENTATION PURPOSES ONLY:

/tmp/omb-doc-6adfb4dedfe0b8.08228061/input/source.doc

(REV—11/3/04)    10/26/2026 8:15 PM

Jen revised for Barbara Carlson