- United Spinal’s Care Support Working Group members share what Personal Care Attendants should know before even stepping through your doorway.
- Helpful resources and links to free online trainings are also offered.
- The big takeaway: Mutual respect can make or break the relationship between the caregiver and client
Rose Marie Mann provides personal assistance for her husband, Dr. David Mann, a wheelchair user with a spinal cord injury who serves on United Spinal’s Board of Directors. At a recent Care Support Working Group meeting, she shared they had reliable help at home until the pandemic hit. This is a story that is all too familiar to the disability community. Since then, they have been trying to find ways to bring in new caregivers, each of whom would require training.
“We don’t go through an agency and must train anyone we hire,” says Rose Marie. The Manns are in a state-funded program in Pennsylvania called Act 150, which allows them to hire anyone to help with David’s care. “It’s nice if someone has some care-related experience, but we don’t require it.”
The Act 150’s paperwork and payroll are handled by Public Partnerships, which provides some basic training. “But mostly, they train workers on how to use the app that tracks their hours,” says Rose Marie. A single caregiver application through Public Partnerships can take up to four to six weeks to process.
The Manns follow a training and teaching model that many educators use.
Once a caregiver’s application makes it through the Public Partnerships and they show up to work, Rose Marie has them watch what she does for a day or two. Once everyone feels comfortable, the PCA works alongside Rose Marie. As they feel more comfortable with aspects of the routine, they start to do more.
If the PCA needs to review something, such as Hoyer lift training, Rose Marie remains in the room. Once they feel they can do it on their own, she just supervises for a period of time.
If Rose Marie is unavailable to help train a new PCA, she and David try overlap the time an experienced PCA is still with them to help train the new worker.
Each client and disability is different, so it is impossible for potential caregivers to know everything before meeting the client and learning the routine. Things such as knowing how to use a Hoyer lift should be taught and practiced prior to working with a person who needs this kind of assistance.
“Caregivers should already be fairly proficient in the use of the Hoyer lift,” says disability rights activist and working group member, Jennifer Kucera. She is a wheelchair user with spinal muscular atrophy. “I’ve had to train countless caregivers because they didn’t even know what a Hoyer lift was. This can be dangerous if they don’t have any training,”
11 rights of home care recipients
Monica Albert, a nurse who has spina bifida, has worked in home healthcare for 25 years. She offers this 11-point Home Care Bill of Rights:
1. They should be aware that they are a guest in your home. They may not like how things are set up, but it is your home.
2. The client directs the care. Ideally, even if you use an agency to manage your services you should be able to interview the PCA. It is so important that the agency cares that you are comfortable with your PCA.
3. Confidentiality is key. They can only say anything about you to other people, even those living in the household, if you approve it. You get to decide who knows or does not know about your care.
4. Your need for care does not eliminate your need for privacy. Some things simply are not the business of the PCA. You determine what they need to know in order to do their job.
5. Disabled people are human and have the same needs, wants, and desires as anyone else in the world. That means if you want to be intimate with someone, they should respect that and not judge or talk about it.
6. Your feelings are valid. Toxic positivity benefits no one.
7. Their job is to assist you as you require, not to take over your life for you.
8. They should be tested on any task that they have to perform that requires a specific skill, like Hoyer lift use, before they attempt to do it with you.
9. Needing assistance does not mean that you are not an adult with the ability to make your own decisions. PCAs need to have that mindset.
10. Changes in skin should be reported to you right away. The PCA needs to be very aware that all skin changes need to be reported to your doctor because wounds are serious. PCAs should help you check your skin every time they are there.
11. Consider a care contract that describes your expectations for each other. It is different from a care plan in that you are the driving force and it states your needs, not what the medical establishment thinks you need.
7 how-to’s PCAs must know
Derrick Winegardner has trained over 24 caregivers over his 27 years as a C5 quadriplegic. He believes all PCAs should know the following:
1. How to properly wash their hands.
2. How to change bed sheets with a person in bed.
3. Proper cell phone etiquette while working.
4. Some knowledge of the type of disability that the patient has and how it affects the person’s abilities. For example, high level spinal cord injuries cause a person to not be able to sweat or regulate body temperature.
5. How to do range of motion exercises with patients.
6. If a person uses a wheelchair, caregivers should respect it and learn how it functions. Know how to put it in and out of gear or how to properly fold or break down a manual wheelchair.
7. Professionalism and respect within the home and personal property of their client.
Available Training and Resources for PCAs
Working group members have highlighted these specific trainings that they feel best prepare caregivers. Some focus on caring for a client with a disability and others are on the well-being of the caregiver, which is equally as important.
The Caregiver Action Network offers a Family Caregiver Toolbox that provides free tips and training for family caregivers who are new, experienced, and or work full-time along with caregiving.
The Kessler Foundation is an organization that conducts groundbreaking research and positive change for people in the disability community. Understanding Spinal Cord Injury: A Course for Personal Care Assistants is an example of one of these trainings that was created with the guidance of people who actually live with a SCI, along with their families, experienced PCAs and rehabilitation professionals.
Members of the Care Support Working Group had the opportunity to listen to Kevin Coughlin from the Wisconsin Division of Medicaid Services share how they have addressed the direct care workforce crisis and the training opportunities they provide. WisCaregiver Careers is a free program that offers trainings, incentives, rewards, and job opportunities for CNAs to advance in their career. They also get paid while completing the self-paced online training and testing.
The curriculum overview for the program was created after extensive research, and it prepares people who want to be a part of the caregiving workforce. This program is only available to those who will be working in Wisconsin, but it is an excellent model for other states to follow.
Managing side effects and secondary conditions
Many people with disabilities must also have to deal with the secondary conditions that come from their diagnosis. Caregivers not only need to be educated on the disability, but also the proper steps and warning signs of the side effects that can be extremely dangerous if not treated correctly and quickly. Examples of secondary conditions to watch for with spinal cord injuries include:
- Autonomic Dysreflexia
- Deep vein thrombosis and other cardiovascular complications
- Pneumonia and other respiratory complications
- Pressure ulcers
- Spasticity
- Osteoporosis
- Pain syndromes
- Urinary tract infections
- Bone fractures
- Bowel complications
- Inability to regulate body temperature
These types of complications, if not treated correctly, can lead to increased hospitalization, a decreased quality of life, and death. “I’m a registered nurse, so I have my eyes on David’s skin every day,” says Rose Marie, “but I appreciate a second pair of eyes so that skin problems can be addressed as soon as possible.” Factsheets on many of these conditions and more are available via our partnership with the Model Systems Knowledge Translation Center.
A caregiver’s point of view
There are two sides to every story, and the same goes for caregiving. The viewpoint of our caregivers is extremely important to keep in mind. Whether it is a family member or a stranger in the caregiver role, their feelings, health and comfort greatly affects the care of the client and the longevity of the working relationship.
Megan and Annie
Megan Meyers has been a nurse for Annie Streit, United Spinal’s Grassroots Advocacy Manager and a C5 quadriplegic, for almost four years. “Being able to talk to the clients prior to coming is helpful. It gives me a chance to know what their needs are and get a feel for their personality and demeanor before just blindly walking in,” says Megan.
“It eases some of the anxiety of the unexpected. Also, it also allows me to ask anything that may better prepare me.”
Annie added, “We have a mutual respect for one another which I believe is incredibly important and our personalities just click. I have that type of relationship with all of my caregivers.”
Rod and Melinda
Rod Simms is married to Care Support Working Group member Melinda Simms and has been her caregiver since 2011. Veterans Affairs formally recognized Rod as a PCA in 2022. Rod came from a caregiving background at home. His mother was a private care nurse and he assisted in the care of others from an early age.
“Hopefully the people looking at becoming a PCA have a vested interest in the person they will be caring for,” says Rod. “If you are considering to be a caregiver for someone that you’re not directly related to, your primary skill set should be compassion, empathy, honesty and taking your job seriously. If these are not your dominant traits, this is not a field for you.” He stressed that connecting on a personal level with the individual you are caring for is imperative.
Check out these additional online caregiving training resources:
- Family Caregiver Toolbox
- Understanding Spinal Cord Injury: A Course for Personal Care Assistants
- Family Caregiver Alliance
- The Caregiver Space
- Best tips and strategies for finding and hiring PCAs
- A Labor of Love – Beating Stress in Long-Term Caregiving
- What Caregivers Care About
- Why I Was Wrong About Dr. Phil’s Caregiver Episode
Join United Spinal’s Care Support Working Group to collaborate with advocates from across the United States to identify policy and advocacy initiatives to improve care support services. The disability community and our caregivers need your help to find solutions for this national crisis.
