Introduction. Please tell us about yourself. 1. What is your zip code? 2. What is your race or ethnic group? (Select all that apply.
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1 Introduction Evaluation of the Lifespan Respite Care Program IRB Protocol.: X Explanation of Procedures: Greetings! Please reply to questions about your experience with respite services as a family caregiver. The Alabama Lifespan Respite Care Coalition asked evaluators from the UAB Center for Educational Accountability to assess respite services across the state. The Coalition will use the information you provide to plan improvements to lifespan respite services for caregivers of people with disabilities and chronic illness. We will NOT collect your name or address without your permission. Your personal identity will not be revealed to others. It will require about 20 minutes to reply to the survey. You may refuse to answer any question or discontinue participation at any time without penalty. Responses will be automatically submitted to this online survey. You will not receive any special consideration if you take part in this assessment. Call Dr. Brian Geiger at or bgeiger@uab.edu, to answer your questions about the survey. Thanks for your participation! If you have questions about your rights as a participant, or concerns or complaints about this activity, you may contact Ms. Sheila Moore. Ms. Moore is the Director of the Office of the Institutional Review Board for Human Use (OIRB). Ms. Moore may be reached at (205) or If calling the toll-free number, press the option for all other calls or for an operator/attendant and ask for extension (Regular hours for the Office of the IRB are 8:00 a.m. to 5:00 p.m. CT, Monday through Friday. You may also call this number in the event the research staff cannot be reached or you wish to talk to someone else.) Please tell us about yourself. Please complete each of the following items. 1. What is your zip code? 2. What is your race or ethnic group? (Select all that apply.) Asian Black White Hispanic Other 3. What is your gender? Female Male 4. What is your age in years? Enter a whole number, e.g. 45
2 5. What is your marital status? (Select one response.) Single Married Separated Divorced Widowed 6. In what range is your annual family income? (Select one response.) $20,000 or less $20,001 - $40,000 $40,001 - $60,000 $60,001 - $80,000 More than $80, How many people who live in your home have a disability or chronic illness requiring daily assistance? 8. Which best describes your relationship to the person with a disability or chronic illness? (Select all that apply.) Birth or adoptive parent Foster parent Grandparent Spouse or partner Sibling Son or daughter Close friend
3 9. Do you receive a Medicaid waiver for caregiver respite services? Yes Don't Know 10. How often do you access caregiver respite services using your Medicaid waiver? Once each week Twice each month Two to three times each year Never 11. How do you expect respite services to help you as a caregiver? What event(s) led you to seek respite services most recently? (Select all that apply) Relieve stress Improve relationship with my spouse or partner Improve relationship with other family member Care for myself Care for medical needs of another family member Safety issues Prevent alcohol or drug problems Care for personal business Participate in family support group/services 13. Tell how members of your household were affected by the event(s): 5 6
4 14. The most recent time I applied for caregiver respite services (Select all that apply.) I did not receive caregiver respite services I was placed on a waiting list for services I received respite services in my home I received respite services in an agency or community setting 15. What agency or organization most recently provided caregiver respite services to you? 16. The most recent time I received caregiver respite services, it lasted Less than 1 day 1 day 2 days 3 or more days 17. Was the length of time you received caregiver respite services enough? Yes Don't Know 18. How would you feel if caregiver respite services were not available? t at all stressed Somewhat stressed Moderately stressed Extremely stressed
5 19. In your experience, how true is each statement about respite services? Very Somewhat True t at all True Does t Apply True Trained respite staff met caregiving needs. Respite offered a short-term break from caregiving. Respite reduced the risk of neglect or mistreatment. Respite provided safe and secure care. Respite enabled me to focus on needs of others in my household. Respite allowed me to enjoy social and recreational activities. Respite reduced my stress level as a caregiver. Respite increased my ability to effectively provide care. The person for whom I provide care felt positively about respite. Explain your answers 5 6 Tell us about your experience 20. How many times have you been unable to find caregiver respite services when you needed them? Never One time Two times Three or more times 21. Consider your most recent experience with caregiver respite services. How long did you have to wait for respite services? Days Weeks Months 22. Are you on a waiting list for caregiver respite services? Yes Don't Know
6 23. How did you learn about respite services in your community? (Select all that apply) Called a federal, state, or local agency for help Recommendation from a support group Recommendation from a church or faith organization Referred by a physician or other clinical service provider Recommendation from a friend or family member Internet website 24. Which agencies or organizations helped you find respite services as a caregiver? (Select all that apply.) Alabama Council for Developmental Disabilities (ACDD) Alabama Department of Education (SDE) Alabama Department of Human Resources (DHR) Alabama Department of Mental Health and Mental Retardation (MHMR) Alabama Department of Public Health (DPH) Alabama Department of Rehabilitation Services (DRS) Alabama Department of Senior Services (DSS) Alabama Department of Vocational Rehabilitation (VR) Alabama Respite Governor's Office on Disability United Cerebral Palsy (UCP) Veterans Administration (VA) Faith-based organizations (church, temple) Please tell us about the person for whom you MOST RECENTLY received respite services as a caregiver.
7 25. What is the gender of the person with a disability or chronic illness who requires daily care? Male Female 26. What is the age in years of the person with a disability or chronic illness who requires daily care? 27. How much assistance does the person with a disability or chronic illness require? assistance Occasional assistance Frequent assistance Continuous assistance Don't know/unsure 28. How much difficulty does the person with a disability or chronic illness have with each of the following? Some Much Don't know difficulty difficulty difficulty Does not apply Communication (e.g., speaking, hearing) Feeding Dressing Bathing and handwashing Caring for mouth and teeth Toileting Cooking Taking medication as prescribed Transportation (driving, riding a bus) Other (please specify) Thank-you for your time and effort! Please answer these final questions.
8 29. What are your additional comments about caregiver respite services? Would you like to receive a summary of the survey results? If so, please provide the following mailing information. Full Name: Street Address: City, State, Zip Code: address (if available): 31. May we contact you again to request additional information? Yes Phone number or address
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Blue Cross Community ICPSM Long-Term Services and Support (LTSS) Handbook Effective March 2014 www.bcbsilcommunityicp.com Call Toll Free: 1-888-657-1211 TTY/TDD 711. We are open between 8 a.m. to 8 p.m.
PATIENT NOTICE. If you are already taking any of the above medications, your provider may want to talk to you about alternative treatments.
PATIENT NOTICE Our goal at is to provide quality medical care. Because of our concern for your health and well-being, there are certain types of medications we may not be able to prescribe to you. Examples