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Tips and tricks for the best back-up care support plan

Feb 16, 2024

  • United Spinal’s Care Support Working Group members have compiled their experiences and suggestions for crafting back-up care support plans to share with you.
  • This resource will help you craft a back-up plan for your care support needs.
  • Being proactive is extremely important for continuity of care.
  • Number one tip? Prepare for the unexpected.

Being prepared for the unexpected is a necessity when it comes to your care support needs. A backup plan will help keep you safe and comfortable at home if an unforeseen circumstance causes any interruption in your care support services. Our Care Support Working Group members want to help you prepare based on their experiences and suggestions. 

Where can you find backup care support?

To start with, “I highly recommend familiarizing yourself with the Lifespan Respite Care Program (ACL) in your specific state,” says Katy Carroll. She’s a working group member and Disability Training Coordinator at the Association on Aging in New York. This program supports caregivers who provide care to family members with a disability, and its objectives focus on elevating the caliber and availability of respite services through:

  • Boosting respite services within states
  • Enhancing dissemination and coordination of respite services
  • Facilitating ease of access to these programs
  • Identifying and addressing any existing service gaps
  • Enhancing the overall quality of present respite services

The name of the respite program is state-specific. So, for example, in New York, you would go to the New York State Caregiving & Respite Coalition (NYSCRC).

The Family Caregiver Alliance also offers an online Services by State tool to help locate public, nonprofit, and private programs or services within your state.

Consider using students in the healthcare field

Our board member Felecia Woolens suggests lining up college students in the health care fields as backup caregivers.

“I like the idea of collaborating with nursing schools to provide a backup plan for people with disabilities,” says attorney and wheelchair user Felecia Woolens. She is a member of United Spinal’s board and our Care Support Working Group. “The nursing shortage has hit our community pretty hard, which has led to a pressing need for backup staff. Thus, even if nursing students cannot serve as primary staff, having ‘reserve’ staff may help alleviate the shortage issue.” Occupational and Physical Therapy students are another source of potential backup care support.

Pay and a high turnover rate are two major challenges with engaging students as backup care support. “In terms of pay, I believe incentivizing staff with course credits and promoting value in doing such work are viable options to explore,” says Felecia. Some students may elect to stay, even if only part-time or on a voluntary or as-needed basis. This may give you time to assess and implement a long-term plan. While not necessarily ideal, it is often better to have short-term staff than no staff.

The ultimate hope is that students will benefit those seeking backup care support while also giving future nurses, OTs and PTs better education and training on caring for members of the disability community. “This is vital, especially since specific knowledge on spinal cord injury, traumatic brain injury, multiple sclerosis, muscular dystrophy, and other major diagnoses are often not incorporated in curricula,” says Felecia.

Keep a care book

Felecia recommends having a care book listing your general daily schedule, any specialized needs, dietary restrictions, and allergies. It also can document general guidelines for your household or person.

Creating a health file is also an excellent way to prepare. This type of file should include:

  • Complete medical history
  • Medication list
  • Backup caregivers contact list
  • Physician contacts
  • Medicare and insurance information
  • Important health documents

For many people in the disability community, planning and preparation are part of so many aspects of our lives. A comprehensive and organized care support backup plan helps everyone involved. It also can reduce the stress and anxiety of what to do if an emergency arises.

Students Helping Students

When Jackson MacTaggart, who has quadriplegia, was a Pennsylvania State University student, many of his care support staff were nursing and OT students. He shared his experience in our Care Support Webinar: Finding, Hiring, Training, and Retaining Care Support Professionals.

Jackson’s needs were not major, and he was relatively independent, so the home health agencies initially said he did not qualify. As a result, he paid out of pocket until a home health agency said they could pick him up if he knew of a PCA.

After his first PCA graduated, she reached out to her peers to help Jackson find another PCA. The next student who stepped in did not want to get hired by the agency, but Jackson had grant funding to help pay for the PCA services.

Jackson contacted the Student Disability Resource Office and the University Nursing Program during his senior year to find another student to be his PCA. Through that student, he learned that students going through the pre-OT, pre-PT, and nursing school have to complete a certain number of working hours in their field as a graduation requirement, and working in home health helps to fill this requirement.

Many students look for this type of outside work because of the hands-on experience. Jackson highly recommends checking out any secondary institutions that have a nursing or kinesiology program in your community to find help with PCA services. “Please do not be scared to reach out to these departments,” says Jackson. “They can be very much a viable alternative.”

Jackson explains more in this clip:

Promising online care platform

Leah Campbell, the United Spinal Association Oklahoma Chapter Advocacy Coordinator, suggests checking out CareYaya as another option for backup care support. CareYaya is a tech startup that provides a pool of vetted, experienced caregivers who are college students in the healthcare field.

Online recruitment with proper vetting is another option for finding care support backup. For more information, see the Care Support Working Group’s Best Tips and Strategies for Finding and Hiring PCAs.

Twenty questions to help you prepare your backup plan:

  1. What are the primary caregiving responsibilities?
  2. Who should the backup caregiver contact in an emergency?
  3. Are there specific medical or healthcare contacts?
  4. What is the transportation schedule?
  5. What are the medical conditions and history of the person receiving care?
  6. What are the medications, dosages, and any special instructions?
  7. Does the person receiving care have any known allergies or adverse reactions to certain medications?
  8. What is the usual daily routine?
  9. Are there any standing appointments, outings, or activities?
  10. Does the person receiving care have a specific mealtime preference or restrictions to their diet?
  11. What are the bathing and grooming routines?
  12. Does the person receiving care need help with mobility or walking aids?
  13. What medical equipment or assistive devices do they use?
  14. What are the immediate steps in case of an emergency?
  15. Are there specific emergency procedures directly related to the condition of the person receiving care?
  16. Do they have a schedule or checklist for the caretaker to follow?
  17. Are there any safety measures or hazards to be aware of?
  18. Who are the key contacts?
  19. Are there any legal documents, such as power of attorney or a living will, that the backup caregiver needs to be aware of?
  20. What are the required hours and the rate of pay? Are the hours flexible?

Paralyzed Veterans of America offers the Managing Personal Assistants: A Consumer Guide. It is a great resource for sample needs assessment worksheets, preference worksheets, and personal care checklists.

Online resources:

Sample templates and charts:

United Spinal:

Join our United Spinal Association Care Support Working Group to collaborate with advocates from across the United States. Together, we identify policy and advocacy initiatives to improve care support services for people with diverse disabilities The disability community and our caregivers need your help to find solutions for this national crisis.