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This survey was developed to better understand how informal caregivers of non-elderly people with disabilities and chronic health conditions successfully assist their loved ones when they do not receive substantial support from the formal disability system. Informal caregivers of people with disabilities often provide medical, behavioral, financial, and other daily supports beyond what most families provide. Yet, for those that do not interact with HHS programs, their needs, challenges and successes are poorly understood. By surveying this population, HHS can gain an understanding that may help the agency better design programs to help individuals avoid extensive services, or to better serve individuals who do require assistance. The survey questions span six domains: (1) caregiving responsibilities; (2) needs of care recipients and caregivers; (3) experience with the formal system; (4) compensation strategies; (5) expectations and planning towards the future; and (6) demographics.
DISCLAIMER: The opinions and views expressed in this report are those of the authors. They do not necessarily reflect the views of the Department of Health and Human Services, the contractor or any other funding organization.
TABLE OF CONTENTS
DOMAIN 1: CAREGIVING RESPONSIBILITIES
DOMAIN 2: NEEDS OF CARE RECIPIENT AND CAREGIVERS
DOMAIN 3: EXPERIENCE WITH THE FORMAL SERVICES SYSTEM
DOMAIN 4: COMPENSATION STRATEGIES
DOMAIN 5: EXPECTATIONS AND PLANNING TOWARDS THE FUTURE
DOMAIN 6: DEMOGRAPHICS
The following acronyms are mentioned in this survey.
|ABA||Applied Behavioral Analysis|
|ASPE||Office of the Assistant Secretary for Planning and Evaluation|
|CHAMP-VA||Civilian Health and Medical Program of the Department of Veterans Affairs|
|CHIP||Children's Health Insurance Program|
|IEP||Individualized Education Program|
|IRB||Institutional Review Board|
|SSDI||Social Security Disability Insurance|
|SSI||Supplemental Security Income|
|VA||U.S. Department of Veterans Affairs|
Thank you for your willingness to participate in the caregiver survey.
[CONTRACTOR NAME] is working on a research project with the Office of the Assistant Secretary for Planning and Evaluation (ASPE) to implement a survey about the characteristics and support activities of informal (not paid) caregivers for people with disabilities. This survey will address the following questions: (1) the key characteristics of the caregiving provided to individuals with disabilities or chronic health conditions under the age of 65; (2) caregiver and care recipient demographic characteristics; (3) informal caregiving strategies and challenges; and (4) the assistance caregivers need to facilitate short and long-term.
Here are a few points about your participation in the survey:
This on-line survey will take approximately 15-20 minutes to complete.
Your participation is entirely voluntary.
You can refuse to take part in the survey and/or you can decline to respond to any survey item(s).
Your responses and feedback will be confidential and your name will not be linked to your survey responses.
Although your responses will be summarized with others in a report to ASPE, your name, any identifying information, and any responses specific to the person for whom you provide care will not appear in the report.
There is a small risk of the loss of confidentiality as a result of participating in this survey.
It is estimated that 1,276 individuals will participate in the caregiver survey.
[Name of contractor] will receive and analyze the data which will be reported in the aggregate in a final report to ASPE.
I have read the foregoing information, and by filling out the survey and submitting my responses, I am consenting voluntarily to be a participant in this study.
If you have any questions regarding this survey, please contact [INSERT NAME AND NUMBER OF ASPE PROJECT OFFICER] or [INSERT NAME AND NUMBER OF CONTRACTOR PROJECT DIRECTOR AND/OR THE CONTRACTOR'S IRB].
Thank you for your time in responding to this survey. This first section asks about any assistance you might provide to another person, under 65 years old, because of a health condition or disability s/he has. This could include a physical, mental, emotional, cognitive, behavioral, or developmental disability, a chronic health condition or psychiatric condition, or blindness or deafness. It also asks for some information about the person who receives assistance.
|1.||Do you provide unpaid assistance or care to a family member or friend because of a health condition or disability? This could include a physical, mental, emotional, cognitive, behavioral or developmental disability; a chronic health condition or psychiatric condition, or blindness or deafness. Assistance can include medical care or help with everyday activities (including supervision or reminders).|
|2.||Does someone else in your home provide unpaid assistance to a family member or friend because of his or her disability or other health condition?|
|3.||Do you provide assistance to more than one person with a disability or chronic health condition? |
|4.||Beginning with the oldest person, how old is the oldest person to whom you provide assistance? |
Age in years_____
|4A.||How old is the second oldest person to whom you provide assistance? |
Age in years _____ [REPEAT UNTIL ALL CR AGES ARE DOCUMENTED]
[IF ALL Q4 >/= 65, GO TO DOMAIN 6. ELSE GO TO Q5]
|4B.||How old is the person to whom you provide assistance? |
Age in years _____ [IF Q4B /= 65, GO TO DOMAIN 6]
|4C.||Can you provide the person's name, nickname, initials or pseudonym to use for the rest of the survey? |
[USE IN PLACE OF CR]
|5.||This study is about assisting people under age 65. Please answer the rest of the questions thinking about the person to whom you provide the most assistance who is under age 65. What is the age of this person? |
|5A.||Please provide the name, nickname, initials or pseudonym of this person. |
[USE IN PLACE OF CR]
|6.||When thinking about the amount of care that [CR] receives, would you say: |
|7.||Do you provide assistance, supervision or reminders to [CR], because of his/her condition or disability, with any of the following activities? [CHECK ALL THAT APPLY] |
|8.||Do you provide assistance, supervision or reminders to [CR], because of his/her condition or disability, with any of the following activities? [CHECK ALL THAT APPLY] |
[GO TO Q12]
|9.||Does [CR] need or use more medical care, mental health, or educational services than is usual for most children of the same age? |
|10.||Has [CR's] need for medical care, mental health, or educational services lasted or is expected to last 12 months or longer? |
|11.||Is [CR] limited in any way in doing the things most children of the same age can do? |
|12.||What are the reasons that [CR] needs assistance? [CHECK ALL THAT APPLY] |
|13.||How long have you been providing assistance for [CR]; would you say |
|14.||What kind of health insurance or health care coverage does [CR] have? [CHECK ALL THAT APPLY] |
|15.||Is anyone paid to provide paid assistance at home to [CR] because of his/her disability or condition? |
|16.||Who pays for this assistance? [CHECK ALL THAT APPLY] |
|17.||On average, how many hours a week of government-paid assistance does [CR] receive at home? |
_____ Number of hours [IF Q17 >7 GO TO DOMAIN 6]
|18.||Where does [CR] live most days and nights of the week? |
|19.||What is your relationship to [CR]? |
|20.||Are you the legal guardian for [CR] |
|21.||Does [CR] currently go to a day treatment, vocational rehabilitation or activity center for persons with disabilities or chronic health conditions during the normal working hours? Do not consider preschool, elementary, middle or high school or summer programs such as camp or school. |
|22.||On average, how many hours a week does [CR] attend this program? If [CR] attends more than one program, please report the total number of hours across all programs. |
_____ Number of hours [IF Q22 > 7 GO TO DOMAIN 6]
|23.||In the past month, how many days per week did you provide care and assistance to [CR] with daily activities? |
|24.||On average, how many hours per day do you spend providing care and assistance to [CR]? |
The next set of questions address strategies and resources you use in helping [CR] and the additional support and resources you might need to continue providing help.
|1.||Which of the following resources have you used in your role as a caregiver for [CR]? [CHECK ALL THAT APPLY] |
|2.||If you personally were unable to provide the assistance [CR] needs, is there someone else who would do the things you do? |
|3.||Thinking about the assistance that you provide to [CR], what parts have been challenging for you? [CHECK ALL THAT APPLY] |
|4.||Which of these has been the most challenging? |
|5.||What aspects of caregiving have been challenging to you personally? [CHECK ALL THAT APPLY] |
|6.||Which of these has been the most challenging? [CHECK ALL THAT APPLY] |
|7.||In addition to what you currently have or use now, what additional medical-related support would help you as a caregiver? [CHECK ALL THAT APPLY] |
|8.||In addition to what you currently have or use now, what additional caregiving-related services would help you as a caregiver? [CHECK ALL THAT APPLY] |
|9.||In addition to what you currently have or use now, what additional programs or services would help you as a caregiver? [CHECK ALL THAT APPLY] |
|10.||Have you received help or therapy from a social worker, psychologist, counselor, therapist, or physician because of your caregiving responsibilities? |
|11.||Would you say this professional was helpful to you in dealing with your caregiving responsibilities? Would you say s/he was: |
|12.||People sometimes have difficulties in meeting their essential household expenses for things such as mortgage, rent, utility bills, medical care, food or groceries. During the past 12 months, has there been a time when you or your household did not meet all of your essential expenses? |
|13.||Do your caregiving responsibilities make it difficult to meet your essential household expenses? |
This section asks about your experience using or trying to use formal services and public programs to help care for [CR].
|TABLE 1. List of Program and Services|
|Monthly cash payment for a disability from Social Security (SSDI or SSI), Worker's Compensation or VA|
|Mental health services (inpatient and outpatient) including substance abuse treatment|
|State-funded health insurance|
|Temporary care (more than 8 hours per week)|
|Occupational, speech and/or physical therapy|
|Specialized educational services, including Head Start, Early Intervention or an IEP|
|Behavioral modification services, such as ABA|
|1.||Does [CR] currently receive [PROGRAM FILL FROM TABLE 1]? |
|2.||If [CR] did not receive [PROGRAM FILL FROM TABLE 1], could [CR] continue to function at the same level, where s/he currently lives? |
|3.||How important is it that [CR] receives [PROGRAM FILL FROM TABLE 1], for you to continue in your role as a caregiver? Would you say |
[ALL GO TO NEXT PROGRAM]
|4.||Have you or someone else ever helped [CR] try to access [PROGRAM FILL FROM TABLE 1]? |
|5.||Which best describes what happened when [CR] tried to access [PROGRAM FILL FROM TABLE 1]? [CHECK ALL THAT APPLY] |
[ALL GO TO NEXT PROGRAM]
|6.||Why didn't you help [CR] try to access [PROGRAM FILL FROM TABLE 1]? [CHECK ALL THAT APPLY] |
[ALL GO TO NEXT PROGRAM]
|7.||Have you changed where you live so you could get services for [CR]? |
This next set of questions asks about ways that you make sure [CR] gets the help s/he needs.
|1.||People manage their caregiving responsibilities in different ways. Which of these describes your approach? [CHECK ALL THAT APPLY] |
|2.||Do you share the responsibilities of handling the finances related to [CR's] condition and/or health needs? |
|3.||In an average month, about how much do you and your family pay for [CR's] medicine, medical care, durable equipment, diets or specialized foods, and other types of assistance that is not covered by insurance/benefits? Please include copays for doctor visits, tests, procedures, prescription drugs and medical supplies, but do not include health insurance premiums or any amount paid by [CR's] insurance. |
|4.||What is your current work status? |
|5.||Is this your current work situation because your caregiving responsibilities prevent you from working full-time or some other reason? |
[IF Q4 = "e" GO TO DOMAIN 5, ELSE GO TO Q6]
|6.||How many hours per week do you typically work for pay? |
|7.||How often do you have the flexibility you need at work to manage your caregiving responsibilities. Would you say... |
|8.||[ASK ONLY IF RESPONDENTS REPORTED SHARING CAREGIVING RESPONSIBILITIES] How often does the family member you share caregiving with have the flexibility she/he needs at work to manage his/her caregiving responsibilities. Would you say... |
|9.||How often have you had too little time for work because of your caregiving responsibilities? Would you say... |
10. To manage your caregiving responsibilities, have you... [CHECK ALL THAT APPLY]
|11.||To manage your caregiving responsibilities, has someone else in your family... [CHECK ALL THAT APPLY] |
These next questions ask about your future expectations for [CR] and what you have done and will need to meet those expectations.
|1.||What kind of activities is [CR] involved in at this time? [CHECK ALL THAT APPLY] |
|2.||What kinds of activities do you hope that [CR] becomes involved in one year from now? [CHECK ALL THAT APPLY] |
|3.||What do you think is needed to make these things happen? (Please explain _______________)|
|4.||Based on everything you know about [CR] and his/her care needs, where do you think it is most likely that [CR] will be living 5 years from now? |
|5.||Ideally, where do you hope [CR] will be living 5 years from now? [CHECK ALL THAT APPLY] |
|6.||What steps, if any, have you taken to make this happen? [CHECK ALL THAT APPLY] |
To help us understand more about caregivers, these last few questions are about you and your household.
|1.||What is your age? |
|2.||Are you male or female? |
|3.||Which of the following best represents how you think of yourself? |
|4.||What is your race? [CHECK ALL THAT APPLY] |
|5.||Are you of Hispanic or Latino/aOrigin? |
|6.||What is your marital status? |
|7.||What is the highest grade or year of school you have completed? |
|8.||In general, how would you rate your overall health? |
|9.||In general, how would you rate your overall mental or emotional health? |
|10.||We do not need to know exactly, but just roughly, could you tell me if your annual household income from all sources before taxes is... [READ] |
Is there anything that we have not asked you that you think is important for us to know? If yes, please specify: _______________
Thank you very much for your time. Your participation is invaluable.
This survey was prepared under contract #HHSP23320100015WI between the U.S. Department of Health and Human Services' Office of the Assistant Secretary for Planning and Evaluation (ASPE), Office of Disability, Aging and Long-Term Care Policy (DALTCP) and Abt Associates. For additional information about this subject, you can visit the DALTCP home page at http://aspe.hhs.gov/office-disability-aging-and-long-term-care-policy-daltcp or contact the ASPE Project Officer, Judith Dey, at HHS/ASPE/DALTCP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, S.W., Washington, D.C. 20201. Her e-mail address is: Judith.Dey@hhs.gov.