Beneficiaries with Disabilities Telephone Survey

Beneficiaries with Disabilities
Interview Guide
Note: This interview guide is not a survey. It is a guide for researchers when conducting
telephone interviews; the researchers will not use this verbatim.
1. Verify beneficiary and functional limitation information from screener.

2. Review Informed Consent verbally over the phone before the interview. [Note: If the
participant identified as having a cognitive impairment, conduct Post-Test after reviewing
Informed Consent information. Determine whether the interview can proceed or not.]
3. Can you recall what it was like when you first applied for Social Security benefits? We
are particularly interested in the way people’s disabilities (in your case, ___________)
affect their interactions with the Social Security Administration.
a. When did you first apply for Social Security benefits?

b. How did you apply: Online, by telephone, or in-person at a field office?

c. What was your experience like finding out what programs you were eligible for?

d. Did you receive adequate information about the various Social Security programs?
Was it clearly written? Was it understandable to you?

4. I would like to ask you some questions about important information you receive from
Social Security, such as notices you get by mail or over the phone:
a. Do they send you this information in the mail or do they call you on the phone?

b. If notices by mail and person is blind or low vision: Do they send you information in
ordinary print, large print, Braille, or some other format?
i. If ordinary print: Did the Social Security Administration ever let you
know that you have other options for receiving information, such as
phone calls, large print, Braille, and other formats?

c. As a person with [type of disability], do you have any difficulty receiving important
information, or [reading/hearing] or understanding the information?

d. Would you prefer to get information from Social Security in some other way? Probe:
For example, [mention these as appropriate: by phone, over the Internet, on a
computer disk, in Braille, in large print, or a tape recording].
e. What else could the Social Security Administration do to make important
information easier for you to receive, read, and understand?

Approved, OMB Number 0960-0526

5. When you need to contact the Social Security Administration about your benefits, how
do you usually do that? Probe if necessary: Do you call them, visit an office, or use the
Internet?

6. If not known, ask: Do you use the Internet? If no, skip to Q. 9.

7. Where do you use the Internet? Probe: Home, work, school, the library, a café, or
somewhere else?
8. Have you gone to the Social Security Administration’s website in the past couple years?
If yes:
a. Were there any particular difficulties or barriers you had that were related to
your [type of disability]?
b. Do you have any recommendations on how to make the Social Security
Administration’s website more user-friendly or easier to navigate for
individuals with [type of disability]?

9. Have you gone to a Social Security Administration office in the past couple years?
If yes:
a. Were there any particular difficulties or barriers you had that were related
to your [name of disability]?
b. Do you have any recommendations to make the Social Security
Administration’s field offices easier to navigate for individuals with [type of
disability]?

10. Have you called the Social Security Administration in the past couple years?
If yes:
a. Were there any particular difficulties or barriers you had that were related
to your [name of disability]?
b. Do you have any recommendations to make it easier for individuals with
[type of disability] to communicate with the Social Security Administration
by phone?

11. Considering everything that we have discussed, what would be the best way for the
Social Security Administration to contact you, and for you to contact them?
12. How would you improve the way the Social Security Administration currently
communicates and interacts with you?

Demographics
(Interviewer: emphasize these questions are optional):

13. Verify age: I recorded that you are ______. Is that correct?

14. If not already, known: What is your gender?
15. What state do you live in?

16. Would you describe yourself as living in a city, a suburb, a rural area, or something else?
17. Is there anything else you would like to share with me about your experience as a Social
Security beneficiary?
INTERVIEWER: (read) Social Security estimated that this survey would take 45 minutes to
complete. If you would like to send comments on this time estimate to Social Security, I
can provide you with the mailing address. Would you like this address?

If yes, read the Paperwork Reduction Act statement below, and then go to closing. If no, go to
closing.

Paperwork Reduction Act Statement - This information collection meets the requirements
of 44 U.S.C. §3507, as amended by section 2 of the Paperwork Reduction Act of 1995. You
may send comments on this 45-minute time estimate to: Social Security Administration,
6401 Security Blvd., Baltimore, MD 21235-6401.
INTERVIEWER: Thank you very much for participating in this study.

Needs Assessment of Social Security Beneficiaries with Disabilities
Informed Verbal Consent Script

Use the following introduction for eligible participants:
Hi, this is (researcher name) from the University of California, San Francisco. We are
conducting a survey on behalf of the Social Security Administration. The purpose of the
survey is to evaluate whether Social Security’s services for communicating with
individuals who receive Social Security disability benefits are effective or need
improvement. We previously determined that you were eligible and interested in taking
part in a 30-45 minute phone interview. Are you still interested in talking with us over
the phone?
If YES:
You told us previously that you are currently receiving Social Security benefits. Is this
true?
If NO:
I’m sorry for the misunderstanding; thank you for taking the time to speak with
me. Goodbye.
You also told us that you had some kind of disability: You said you were [Choose one:
deaf, hard of hearing, blind, or of low vision; or that you had difficulty using your hands,
a mobility impairment, a speech impairment, or a cognitive impairment]? Is this true?
If NO:
I’m sorry for the misunderstanding; thank you for taking the time to speak with
me. Goodbye.
If YES
For this study, we would like to ask you some questions over the phone to find out more
about your experience communicating with Social Security. We would like to know your
communication preferences and any barriers you’ve experienced communicating with
Social Security. We’d very much like your input although your participation in this
survey is voluntary. You’re free not to participate at all, to end the interview at any time,
or to not answer any question that you feel is too personal. However, your participation
will help Social Security evaluate and improve its services to beneficiaries with certain
disabilities, including ways they may provide better access to their services.
You've given us your name, phone number, and email address so that we could contact
you. We will not share this information with Social Security and we will destroy it at the
end of the study. If you decide to participate in this interview, your answers will be kept
private and they will not affect your benefits in any way. We may present the information
you provide to us in reports to Social Security or in scientific presentations or
publications, but the information will not contain any personally-identifiable information.
Only researchers on this project will have access to the written notes and forms.

Verbal consent v2, 4/25/11

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Do you have any questions?
**If has a COGNITIVE IMPAIRMENT, follow POST TEST SCRIPT below to
introduce additional set of questions to determine adequate understanding
of study before obtaining informed consent.**
Are you willing to participate in this phone interview? It will take about 30-45 minutes of
your time.
If YES:
Great!!
[Proceed with the interview.]
If NO:
Thank you for taking the time to speak with me. Goodbye.

POST-TEST SCRIPT
INTERVIEWER: Do you remember when we first talked about the project I told you that
I would be asking you some additional questions? We are doing this because you said
you have [cognitive impairment/condition from screener] and we want to make sure you
understand the study before taking part in it. Do you mind if I ask you those questions
now?
IF YES: Conduct post-test
IF NO: I’m sorry you do not want to answer any additional questions—this means we
will not be able to have you participate in the study. The reason we are doing this is to
make sure you are aware of the risks and benefits of the study. In a way, we are doing
this to protect you. We are not allowed to interview anyone who may not understand
the study. Thank you for your interest.
AFTER POST-TEST
IF PASS: Thank you for answering these questions for us. This helps us make sure
you are aware of the risks and benefits of the study.
IF NO PASS: Thank you for answering these questions for us. Unfortunately, some of
the answer[s] you gave us showed that you did not understand the purpose of the study
or the risks and benefits of it. Because of that, we do not feel it is right for us to include
you in our study. This is to protect you and us. We follow strict guidelines from our
University and a research oversight committee about making sure people in our studies

Verbal consent v2, 4/25/11

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understands what it is about. We truly appreciate your interest and the time you took
talking with us.
IF THEY ARE ANGRY: If you would like to speak to my supervisor you can contact:
Dr. Steve Kaye, PhD, at 415-502-7266, or toll-free at 866-727-9577 or the
UCSF Committee on Human Research (CHR), at 415-476-1814, 8 am to 5 pm, Monday
through Friday.

Verbal consent v2, 4/25/11

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University of California, San Francisco
Needs Assessment of SSA Beneficiaries with Disabilities
Evaluation for Consent to Act as a Research Participanti
Cue #1: In summary, we’re calling you so you can take part in a research study over the phone. What you tell us
will not affect your Social Security benefits in any way.
Question #1: Will talking to me on the phone affect your Social Security benefits in any way?

Cue #2: This phone call is about how Social Security contacts you.
Question #2: What is this phone call about?

Cue #3: During the phone call you will be asked to share some of your experiences with Social Security.
Question #3: What will you be asked to share during this phone call?

Cue #4: There is a risk that I might ask you to talk about something that is embarrassing or personal.
Question #4: Tell me a possible risk of having this phone call with me.

Cue #5: This study may help Social Security serve others like you better.
Question #5: Who will this study help?

Cue #6: Remember, you can end this phone call at any time.
Question #6: If you want to end this phone call, when can you do this?

Question #7: Considering everything we’ve talked about, would you like to be a part of this study?
____I will participate ___I will not participate ___Other:
_____________________________________________________________________________________________
----------------------------------------------------------------------------------------------------------------------------- ---------------------------ASSESSMENT: __________________________________________________________________________________
____Does____Does not demonstrate adequate decision-making capacity.

________________________ __________________________________

_______________

Printed name of assessor

Date

1

Signature of assessor

Adapted from University of California, San Diego’s Alzheimer’s Disease Research Center Evaluation of Decision-Making Capacity for Consent to Act as a
Research. Accessed November, 23, 2010 < http://irb.ucsd.edu/ADRC_Post-test.doc>
v 1.0, 1/12/11

Needs Assessment of SSA Beneficiaries with Disabilities
University of California, San Francisco
Screening Questions
1. What is your age?
2. Are you receiving monthly payments from Social Security?  Yes

 No

If NO, do not continue with any of the following questions.
2a. What kind of benefits are you receiving from Social Security? (check all that
apply)
 Supplemental Security Income (SSI) benefits
 Social Security Disability Insurance (SSDI) benefits
 Social Security retirement benefits
 Don’t know
3. Are you receiving Social Security benefits because of your disability, your child’s
disability, retirement, or are you a survivor of someone who was on benefits?
4. Do you have any of the following conditions or disabilities:
4a. Are you deaf?

_____ Yes

_____ No

4b. Are you hard of hearing?

_____ Yes

_____ No

4c. Are you blind?

_____ Yes

_____ No

4d. Do you have low vision that cannot be corrected with glasses or contacts?
_____ Yes

_____ No

4e. Do you have difficulty using your hands or a mobility impairment?

4f. Do you have a speech impairment?

V 1.0, 1/12/11

_____ Yes

_____ No

_____ Yes

_____ No

1

4g. Do you have a learning disability?

_____ Yes

_____ No

4h. Do you have a developmental disability that affects your ability to learn?
_____ Yes

_____ No

4i. Do you have a cognitive condition that affects your ability to concentrate,
remember things or make decisions?
_____ Yes
_____ No
5. In what state do you live? ___________________________________________________________
FOR INTERVIEWER ONLY:
Eligibility:
Receives any type of SSA benefits & has at least one condition/disability.
If has a cognitive impairment:
“You are eligible to participate, but I will have to ask you more questions and obtain your
informed consent before we do the actual interview. In the meantime, please review the Study
Information Sheet that I will send to you, and feel free to contact me with any questions. You
will also have ample time to ask questions when I call you back for the interview.”
Is the participant eligible?
_____ Yes

_____ No

If yes, collect the following information and send him/her the Study Information Sheet:
Name:
Phone:
Email:
Time Zone:
Preferred time/day for a 30-45 minute phone interview:
Other notes (accommodation issues):

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UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
INFORMATION SHEET ON PARTICIPATION IN A RESEARCH STUDY
Study Title: Needs Assessment of Social Security Beneficiaries with Disabilities
This is a research study to help find out how the Social Security Administration (SSA) can
improve how they communicate with beneficiaries who have disabilities. The SSA asked
researchers at the University of California, San Francisco (UCSF) to interview SSA beneficiaries
with disabilities. UCSF will be doing these interviews to see how these beneficiaries
communicate with the SSA, what barriers they experience when communicating with the SSA,
and what their preferred formats for communicating with the SSA are. The study researchers,
Steve Kaye, Ph.D., Alice Wong, MS, and Melinda Neri, BA, Department of Social and
Behavioral Sciences, UCSF, will explain this study to you.
Research studies include only people who choose to take part. Please take your time to make
your decision about participating, and discuss your decision with your family or friends if you
wish. If you have any questions, you may ask the researchers.
You are being asked to take part in this study because you identified yourself as a person with a
disability who currently receives benefits from the Social Security Administration.

Why is this study being done?
The purpose of this study is to conduct interviews to explore how SSA beneficiaries with
different types of disabilities interact and communicate with the SSA, what barriers they
experience when communicating with the SSA, and what their preferred formats would be when
communicating with the SSA.
The study is being funded by the Social Security Administration (SSA). The SSA pays for the
conduct of this study, including part of the salaries of Dr. Kaye, Ms. Wong and Ms. Neri.

How many people will take part in this study?
About 140 people will take part in this study.

What will happen if I take part in this research study?
If you agree to participate, the following will occur:
•

•
•

The researcher will interview you over the phone for about 30-45 minutes. The researcher
will ask you about your experiences communicating and interacting with the SSA. You will
also be asked about any barriers you have experienced during your interactions and
communications with the SSA, as well as your preferences for communicating with the SSA.
The researcher will take detailed notes during the phone conversation.
After the interview, the researchers will type up the notes and remove any mention of names
or other personal identifiers.

 Study location: All of these procedures (i.e., the interviews) will be done via the telephone
and therefore at a location that is most convenient for you – most likely your home, office, or
place of work.
INFO SHEET V2, 5/23/11

PAGE 1 OF 3

How long will I be in the study?
Participation in the study will take a total of about 30 – 45 minutes.

Can I stop being in the study?
Yes. You can decide to stop the interview at any time. Just tell the study researcher right away
if you wish to stop being in the study or if you do not want to continue answering any or all of
the interview questions.
Also, the study researcher may stop you from taking part in this study at any time if he or she
believes it is in your best interest, if you do not follow the study rules, or if the study is stopped.

What side effects or risks can I expect from being in the study?





There is a possibility that some of the discussion topics or interview questions may cause
emotional discomfort or embarrassment for you, but you are free to decline to answer any
question and end the interview at any time.
The contact information (your name, email address, and phone number) that you personally
provide will be handled as confidentially as possible. We will not share your contact
information with Social Security and we will destroy it at the end of the study. Your contact
information will not be kept with the answers you provide during the interview, but there is
minimal risk that your answers could be associated with your contact information. Although
we will protect your contact information and keep it private, there is always a risk that it
could be stolen or breached.
For more information about risks, ask one of the researchers.

Are there benefits to taking part in the study?
There will be no direct benefit to you from participating in this study. However, it is our hope
that over time, this research will help to improve how the SSA interacts and communicates with
their beneficiaries who have disabilities.

What other choices do I have if I do not take part in this study?
You are free to choose not to participate in the study. If you decide not to take part in this study,
there will be no penalty to you. It will not affect your Social Security benefits in any way.

Will information about me be kept private?
We will not share your contact information with Social Security and we will destroy it at the end
of the study. We may present information you give to us during the interview in reports to Social
Security or in scientific presentations or publications, but the materials will not have any
information that could identify you.
Your contact information will not be kept with the answers you provide during the interview, but
there is minimal risk that your answers could be associated with your contact information.
Although we will protect your contact information and keep it private, there is always a risk that
it could be stolen or breached.

INFO SHEET V2, 5/23/11

PAGE 2 OF 3

Organizations that may look at and/or copy the de-identified research records for research,
quality assurance, and data analysis include:


The UCSF Committee on Human Research

What are the costs of taking part in this study?
There is no cost for you to take part in this study. You will not be charged for any part of this
study.

Will I be paid for taking part in this study?
No, you will not be paid for taking part in this study.

What are my rights if I take part in this study?
Taking part in this study is your choice. You may choose either to take part or not to take part in
the study. If you decide to take part in this study, you may leave the study at any time. No
matter what decision you make, there will be no penalty to you in any way. It will not affect your
Social Security benefits in any way.

Who can answer my questions about the study?
You can talk to the researcher(s) about any questions or concerns you have about this study.
Contact the researcher(s), Steve Kaye, PhD at 415-502-7266, or toll-free at 866-727-9577; Alice
Wong at 415-502-7097, or Mel Neri at 415-476-5164.
If you have any questions, comments, or concerns about taking part in this study, first talk
to the researchers (above). If for any reason you do not wish to do this, or you still have
concerns after doing so, you may contact the office of the Committee on Human Research,
UCSF's Institutional Review Board (a group of people who review the research to protect your
rights).
You can reach the CHR office at 415-476-1814, 8 am to 5 pm, Monday through Friday, Pacific
Standard Time. Or you may write to: Committee on Human Research, Box 0962, University of
California, San Francisco (UCSF), San Francisco, CA 94143.

CONSENT
You have been given a copy of this consent form to keep.
PARTICIPATION IN RESEARCH IS VOLUNTARY. You have the right to decline to be in
this study, or to withdraw from it at any point without penalty or loss of benefits to which you
are otherwise entitled.

************************************************************

INFO SHEET V2, 5/23/11

PAGE 3 OF 3

Needs Assessment of Social Security
Administration Beneficiaries with Disabilities

University of California, San Francisco (UCSF)
Are you a person with a disability (including cognitive, hearing, vision,
or physical) who receives benefits from the Social Security
Administration? Benefits can mean SSI, SSDI, or retirement.

If so, we’d like to talk with you!!

Researchers at the UCSF Disability Statistics Center want to know
more about your experience applying for Social Security benefits and
your interactions with the Social Security Administration. We are
conducting a needs assessment for the Social Security
Administration so that they can communicate better with their
beneficiaries who have disabilities. Phone interviews will be
approximately a 30-45 minutes long.

For more information, or to participate, please call this toll-free
number: 1-855-209-9538
Please speak clearly and slowly to leave your name and number. A
UCSF researcher (Mel) will get back in touch with you to tell you
more about this study.
Or you can email:
[email protected]
Alice Wong, Staff Research Associate II
UCSF Disability Statistics Center

V 1.0, 2/18/11