Attachment A-3. Possible Exiters Focus Group Protocol

Appendix A-3. Focus Group with Possible Exiters Protocol

BEYOND BENEFITS STUDY
SOCIAL SECURITY ADMINISTRATION
Thank you for agreeing to participate in this focus group. My name is [NAME] [if have someone
else there, introduce them as well]. [I/we] work for Westat, a research organization based in
Rockville Maryland. The Social Security Administration, or SSA, has hired Westat to conduct the
Beyond Benefits Study.
During the Beyond Benefits Study, we collect information about the needs of adults across the
country who currently receive disability-related payments from SSA and are currently going through
the continuing disability review (CDR) process to determine if their disability became less severe and
are no longer qualified for benefits. We will use what we learn to identify services that help people
who stop getting disability-related payments and are thinking about going back to work or finding a
better job. The study also gives SSA information that may improve the agency’s disability-related
programs and policies.
Today, we’d like to hear about your experiences receiving disability payments, your life now, and
your goals for the future.
We previously sent you an informed consent sheet, explaining your rights in participating in this
study. Did you have any questions about that information? [ANSWER QUESTIONS]
I just want to remind you of some of the key points about your rights. This is a research study. Your
participation in this focus group is voluntary. Your answers will be used for research purposes only.
Taking part in the study, or choosing not to take part, will not affect any decision SSA makes about
your disability benefits or payments now or in the future.
You can stop participating in the focus group at any time without penalty. You can choose not to
answer one or more of the questions. If you decide not to participate in the focus group, there will
be no penalty and your decision has no impact on any decision SSA makes about your current or
future disability benefits or payments. If you get upset during the interview, we can offer you a
referral to crisis management services that you can use if you want. However, if you tell [me/us] that
you are planning to hurt yourself or someone else, [I am/we are] required by the law to notify
appropriate authorities.
At the end of the study, we will submit a report to SSA summarizing the needs of people who live
with or are recovering from a disability. We may use quotes from you or others in our reports but no
one’s name will be linked to those quotes.
We have planned for this focus group to last up to one hour. At the end, you will receive a $40 Visa
gift card by mail to thank you for your participation.
Do you have any other questions? [ANSWER ALL QUESTIONS]
Finally, with your permission, I would like to record this interview to help [me/us] recall what was
said. Are you okay with me recording? [PAUSE FOR RESPONSE]
[IF AGREES TO RECORDING]
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Appendix A-3. Focus Group with Possible Exiters Protocol

I’d like to start the audio recording now. [TURN ON THE RECORDER.]
For purposes of the recording, I am going to ask you:
Are you willing to participate in the focus group? Are you willing to have the focus group recorded?
[PAUSE FOR RESPONSE.]
[IF DECLINES RECORDING]
Unfortunately, that means that you cannot participate in the focus group. Thank you for your
interest.
[PAUSE FOR RESPONSE.]
OK let’s begin.

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Appendix A-3. Focus Group with Possible Exiters Protocol

A.
Introduction
To start, I’d like to review the guidelines for this focus group and also facilitate some
introductions.
As I previously mentioned, my name is [NAME] and I work for Westat, a research company.
I’m joined by [NAME] who will act as a technical assistant during the focus group. We are
gathering information for the Social Security Administration about how to improve programs
for people with disabilities.
We want everyone to feel comfortable sharing their experiences with us in this group. As part of
that, I want to emphasize that everything that is said during this focus group should be kept
private. That means that while you can talk to people outside this group about the focus group
in general terms, no one should be talking specifically about what was said. For example, you can
tell people that you participated in a focus group about people receiving disability benefits, but
don’t tell people that “so-and-so said this or that.” We won’t be using any last names, and we’ve
encouraged people to use pseudonyms or nicknames if that makes them more comfortable. If
anyone has any concerns about their privacy, please let me know.
All right. Let’s start with some introductions. If we could go around, I’d like to ask everyone
what name they’d like to be called, and something about your experience receiving Social
Security disability benefits. Let’s start with [NAME]
[NOTE: AFTER INTRODUCTIONS, CAN GUIDE THE DISCUSSION TO ANY OF THE
TOPICS BELOW, BUT DOES NOT HAVE TO BE IN ORDER]
[FOR ALL QUESTIONS, PROBE WHETHER OTHERS IN GROUP HAVE HAD
SIMILAR OR DIFFERENT EXPERIENCES/WHETHER THEY AGREE OR
DISAGREE]
B.

BACKGROUND

Before we dive into the questions I have, I’d like to learn a little about you.
• Who here is currently employed? This could be full time or part time work.
o What do you do?
• Who here is looking for work?
o What kind of work are you looking for?
• Has anyone worked for pay since they started receiving disability payments?
Thank you for giving that helpful background information.
[NOTE: Use the questions under B. Applying for disability payments, C. Receiving disability
payments, D. Learning payments would stop, E. When payments stopped, F. Present, G. Future and
reflections, to help prompt the interviewee to continue to talk about relevant topics. You do not
need to ask each question if it does not apply or the interviewee already addressed the topic.]
C.
APPLYING FOR DISABILITY PAYMENTS
Let’s talk about how you felt when you first started receiving disability-related payments.
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Appendix A-3. Focus Group with Possible Exiters Protocol

1. How did applying for benefits make you feel?
2. How did you think receiving disability payments would change your life, if at all?
a. Your income? (Probe for more income and ongoing/dependable income)
b. Your health?
c. The healthcare you receive?
d. Other aspects?
3. For how long did you think you would receive payments?
Probe: Did you think that you would return to work full-time one day?
D.
RECEIVING DISABILITY PAYMENTS
Let’s talk about your life while receiving disability payments.
Health and Health Care
4. Do you feel like you are able to get the healthcare you need? Why or why not?
a. Does this include general care (annual checkups, etc) as well as specialized care for
your impairment?
b. Do you feel comfortable going to a doctor? Do you feel your doctor could
understand your needs and help you? Why or why not? Do you feel your doctor
treated you fairly?
Employment
5. [if anyone worked while receiving benefits] For those of you who have worked while
receiving disability payments, what is/was your experience like working while managing a
disability?
i.
What do you like about it?
ii.
What don’t you like about it?
6. For those of you who haven’t worked while receiving disability payments, have you wanted
to work? Why or why not?
7. Who here has heard of SSA’s Ticket to Work program?
[if anyone has]
a. What is your impression of it?
b. Have you participated in the Ticket to Work program?
i. [IF YES] What was your experience like?
8. Are you aware of any services in your community that can help you find a job?
a. Probe: That can help you build a resume? A cover letter? Practice for interviews?
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Appendix A-3. Focus Group with Possible Exiters Protocol

b. For those of you who have heard of these services, have you ever used any? Why or
why not?
c. For those of you who haven’t used these services, would you ever use them? Why or
why not?
Barriers
9. Since you started receiving disability payments, have any of you ever had trouble paying your
rent or keeping stable housing? Were you ever homeless, or are you now homeless?
a. Are you aware of any services in your community that can help with housing?
i. [IF YES] Have you ever used any of these services? Why or why not?
ii. [IF NO] Would you ever use any services like that? Why or why not?
10. Since you started receiving disability payments, have any of you found it challenging to get
transportation around your local area?
a. What types of transportation do you use to get around?
b. Are you aware of any services in your community that could help you with
transportation?
i. [IF YES] Have you ever used any of these services? Why or why not?
ii. [IF NO] Would you ever use any transportation services? Why or why not?
11. Since you started receiving disability payments, have you had reliable access to the Internet at
your home?
a. [IF NO] Do you access the Internet in other places (e.g., public library, retail stores
or restaurants, etc.)? How do you access the Internet (e.g., library computer, cell
phone, a friend’s computer, etc.)?
12. Since you started receiving disability payments, have you ever found it difficult to afford
enough food?
a. If yes, how do you cope with this?
b. Are you aware of any services in your community that could help you to get enough
food (food pantries, SNAP, etc.)?
i. [IF YES] Have you ever used any of these services? Why or why not?
ii. [IF NO] Would you ever use any services like that? Why or why not?
13. Have any of you experienced any discrimination related to your impairment, or related to
other aspects of your life? [race/ethnicity, gender/gender identity, sexuality, age, etc.]
a. How has your experience with discrimination affected your ability to make ends
meet, if at all? To get help?
b. Do you feel you cannot access help you may need because of this discrimination?
Can you tell me a little more about that?
14. Are there any other challenges you have faced since you started receiving disability payments
that you wish you had help with?
a. [If YES] What kind of help would you have want?
Social Support
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Appendix A-3. Focus Group with Possible Exiters Protocol

15. Who do you turn to for help or support, if anyone?
Probe: Friends, family, community organizations or advocacy groups, churches or religious
groups?
a. Are they helpful to you? IF YES, how were they helpful?
16. Are there any support organizations in your area that you wish you could get help from, but
can’t or don’t feel comfortable getting help with? If so, why?
E.

LEARNING PAYMENTS WOULD STOP
Let’s imagine that you had a friend who received disability payments, and they received a
letter telling them their benefits would stop.

17. How would you tell your friend to prepare for their benefits ending?
a. Do you think they would need help or support from others? If so, from whom?
b. Do you think they would be able to get the help they needed to prepare? If so, from
whom?
c. How do you think they could replace the income they would lose from disability
payments?
18. Would the payments stopping impact their ability to…
a. Get around your local area?
b. Access the Internet?
c. Get enough to eat?
d. Keep their housing?
e. Get access to health care when they needed it?
f. Afford co-pays for medications or doctor or clinic visits?
g. Afford medications they were taking at that time?
F.

FUTURE AND REFLECTIONS

19. Where do you hope to be in your life in one year?
a. In 5 years?
[probe on employment]
20. The SSA offers different programs to people who are transitioning off of disability
payments, such as connections to employment networks that help with career planning and
counseling, connections to vocational rehabilitation agencies that can provide training for
different jobs, and connections to organizations that can help with legal support and
accommodations. Do you think any of these would be helpful if you were told your benefits
were going to end?
a. How would you prefer to be told about available programs (e.g., email, text, phone,
paper brochure, other)?
b. How do you think SSA could introduce these kinds of transition programs so that
people would want to participate?
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Appendix A-3. Focus Group with Possible Exiters Protocol

21. If money were no object, what programs would you design to help people on disability meet
their needs?
22. If money were no object, what programs would you design to help people whose disability
payments were ending?
Thank you for your participation. We will send you a $40 gift card by mail. May I please have your
mailing address?
[CONFIRM ADDRESS FOR MAILING INCENTIVE]
Thank you, that’s all the questions we have.

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