HOME AND COMMUNITY-BASED SERVICES

As a complete quadriplegic a big part of your life is going to be completing the daily personal care you once did without a second thought. Depending on your support system, finding good caregivers may or may not be a time-consuming effort in life.

Medicaid may pay for some personal care attendant (PCA) hours, but it typically isn’t enough for a high-level quadriplegic’s daily needs. Some quadriplegics have family members willing to assist who may or may not be compensated by Medicaid. Most states use self-directed programs to allow enrollees to choose family caregivers (excluding spouses in some cases).     

If you don't qualify for Medicaid you may have to pay for these vital services out of pocket.

Before you head home you should make skilled nursing service is available to you in addition to personal care. This service is critical because it keeps you out of the doctor’s office for routine care like catheter changes and bowel care. Typically a nurse will visit weekly to assess skin for breakdown, monitor vitals, tend to any wounds, perform tracheostomy care, and incontinence care. They often also have staff which assist with bathing. It's usually covered by Medicare but Medicaid may cover it while you wait. 

As of 2026 America is enduring a nationwide caregiver crisis which may worsen as Boomers age and the shortage is exacerbated. But we want to stay in our homes! That’s why our family members often sacrifice their own careers and independence and even jump into the caregiving role.

Employing caregivers to come into the home is sometimes a better choice than relying on family. Caregivers arrive fresh and energetic and ready to do the work that could be exhausting for families to do around the clock. Research the community where you will be living. What resources are available to you? Most cities will have multiple homecare agencies to choose from, but many small towns and rural areas don’t have any. You’ll have to reach out to the community to recruit a caregiver to employ.

Home Healthcare is a different service provided by Medicaid. It’s usually a nurse and CNA that come by regularly and take care of catheter changes, wound care, or other issues you may have. Home Healthcare is considered “skilled care”.

Personal Care Attendant (PCA) care is not performed by professionals and consists of assistance with Activities of Daily Living (ADLs). These activities include bathing, grooming, dressing, getting to and from bed, eating, ect. In addition to ADLs, most agencies offer housework, cooking and shopping if you’re in need of that, too.

 Caregivers (PCAs) are considered “unskilled care” but agencies do require first-aid and CPR training and typically provide some training.

How do we pay for home care?

Your health insurance will determine how much “skilled” and “unskilled” care they will pay for. Medicaid covers PCAs. The maximum number of hours allowed varies from state to state. Your case manager will determine how many hours you qualify for based on a home visit. Most long term care (LTC) insurance plans offer some homecare hours, but they only pay home care benefits to a licensed home care agency or other licensed provider; others pay a set daily amount to the insured person who qualifies for the benefits.

The Department of Veterans Affairs (VA) helps veterans afford home care via direct financial assistance or care services.

If you’re on Medicaid, the Medicaid Self-Directed Care program allows you to manage your own health services. It lets you hire friends and approved family members as caregivers. You can hire siblings and grown children but in most states it can't be a parent or spouse. Check your state here. Family caregivers may be required to obtain a caregiver certificate, pass a criminal background check and become trained in CPR/first aid.

Respite hours are also available to give your caregivers breaks. During breaks you can stay in a skilled nursing facility or opt to be cared for by another personal caregiver from the agency your primary caregiver is employed with, if someone is available.          

Hiring: Agencies vs Ads

Hire an agency:

• You know caregivers have passed a background check and they are bonded.
• If a scheduled caregiver does not show up or work out, a replacement can be sent.
• Agencies are available in most urban and suburban communities but fewer agencies serve rural areas. 
• Check for agency reviews from trusted online sources.
• While the hours vary from state to state and from one insurance plan to another, some care is covered by long-term care insurance.
• One downfall of hiring from an agency is the high turn over rate as many individuals are employed as caregivers while they transition from one job to another.         

Hire privately: 

The informal way of finding help is to hire an attendant privately. Put an ad out on social media and recruit from bulletin boards in local skilled nursing facilities and nursing programs. Check out care.com/caregivers. Always perform a background check and check credentials and work history and especially references. Was the caregiver reliable and competent?

Private hiring offers more flexibility in tasks that can be done. Perhaps it also affords a greater opportunity to establish long term rapport with a caregiver. A con of hiring your own care is that if your caregiver is sick or doesn’t show, it is your responsibility to find alternate help. The greatest downfall of private hiring is the cost is probably yours to bear.

Check with your long-term care insurance policy to determine whether there is coverage for hiring someone privately, or only for hiring through an agency.                   Check with your tax accountant to see if the cost of a hired attendant might be tax deductible.         

How much care will I need? 

After a while of being at home you will have a better idea about when you need the most care and how long it will take. If you have family helping you with little things during the day and waking with you at night you may only need caregivers for a few hours in the morning and again in the evening.         

The quadriplegic community advisors caution when employing family as caregivers.

Multiple family members need to work to survive in today’s economy. There isn’t always a family member who is capable and available to provide care for a disabled member. Every injury, individual and family is different, but studies have shown there is a significant relationship between quadriplegic and caregiver emotional distress, particularly when they are family. The impact of caregiving on the psychological well-being of family caregivers is so important to consider. When family caregivers are highly distressed, it has a negative effect on your long-term adjustment, too. Besides, we don't want to stress out our family.

Should I hire a family member? 

One of the most influential factors in your decision to move in with or otherwise employ a family member is their health. Chronic stress can weaken the immune system and make people more vulnerable to illness. It isn’t always easy to consider our loved one/caregiver’s stress. We are much harder on people we love than complete strangers. We might forgive a professional caregiver for something that we would get very upset with a loved one about. We feel more comfortable being ourselves with the people we love, and we feel like we can push the limits of that relationship. This goes for both quad and caregiver.

Family caregivers can burn out if too much of our care is heaped on one person. When our families care for us it’s important to try to understand their stress and encourage them not to forget to take care of themselves, too. When considering our own struggle as quadriplegics it may be tempting to adopt the perspective that being hard on our loved one/caregiver pales in comparison to how hard the world has been on us. It might be easy to forget that just because they don’t have a severe disability doesn’t mean life isn’t a struggle, especially in high-stress caregiver roles. The family member caregiver may feel under-appreciated or used.   

Maybe you are considering having your partner provide your care. Some couples certainly do well with one person caring for the other. But as much love as there may be in a marriage or partnership, the stress of daily care can be a LOT to put on just one person. If your partner does participate in your care, be mindful of the stress and distribute the work between another family member or paid caregiver as well. Unfortunately the loss of the pre-disability relationship dynamics and, in some cases, the adoption of a less equitable, sometimes "parent-child" dynamic, can be difficult on a couple. Caregivers have a higher risk of stress, depression, anxiety, and social isolation. The shift in roles can make open discussion difficult, leading to emotional distance. Disagreements in perception of support needs can also lead to conflict. Seek outside help!  Your family may also benefit from therapy.               

“Sometimes having a caregiver sucks but it’s easier being upset with a caregiver than it is to feel shitty because your partner snapped at you or whatever because they’re helping you. I don’t like feeling like a burden or a child to the person that I am dating, married to. I was married for eight years and sometimes he would use my need for help as a tool to fight me when we had a disagreement. It made me feel awful and small over something I couldn’t help, by someone I loved the most. I decided never again would I let someone I am sleeping with be my regular caregiver. It takes all of the fun and sparks out of marriage/relationships in my experience.” Anonymous, C6

Some couples report an increased sense of closeness, satisfaction from fulfilling marital commitments, and a deeper appreciation of their bond. When couples view the disability as a shared challenge (a "we-stress" or "we-perspective"), they are more likely to engage in conjoint coping, which is associated with better adjustment and well-being.   
           
“My family pretty much split my care up between my mom and sisters for the first several years. By four years in I had moved in entirely with one sister. We moved out of town and lost the rest of our support system. I only qualified for 20 hours of care and couldn't afford to pay more. When she got pregnant with her third child I moved back in with my mom but her alcoholism was so severe it didn’t workout. She wouldn’t wake up with me if I needed help at night. Now I’m living with my other sister. We have a lot of complications because she really doesn’t have the time and energy either. I love my family and I know they love me but it’s really hard.” Alicia, C3

“My mom takes care of me so sometimes it feels like I never grew up. I was injured at 22 so I’d only really been on my own for a couple years. My mom can be really hard on me and push me to do more than I can. She’s also my biggest support in the world. I have a big family and a lot of support and I’m really grateful for that. I’m working towards feeling more independent so I’m taking college classes online. I think that if you’re an adult who has gone back to the care of their parents it’s important to maintain some independence. One day I would like to live independently with a caregiver but good caregivers are hard to find and my mom always ends up stepping in.” Becka, C5               

“I hire caregivers, sometimes friends or friends of friends. My insurance pays for it. Never family or partners for regular everyday care but sometimes as backup or on vacation. I don’t like the stress, animosity or power struggle when it is a lover or a family member that is responsible for my daily care.” Anonymous, C5             

If you need to pay someone to live in the home, do the housekeeping, prepare meals, do personal care and provide assistance or care through the night, you could be looking at a high expense. With a live-in caregiver, some of the salary may be offset by things like room and board, food, or allowing access to a vehicle for personal use.If you have live-in help, some states require that the attendant get 5 hours of uninterrupted sleep so you might have to hire a nighttime attendant (unless family or friends can help at night) in order to give the daytime attendant a break.

 “I need help for a couple hours in the morning and a couple hours in the evening, so I employed a caregiver for those shifts. I needed help sometimes at night; a drink of water, a fan turned off. Throughout the day I needed help eating. I offered to open my home to my caregiver and her family. We agreed on bills, care and pay. She didn’t keep her end of the deal and suddenly I was stuck with this entire family in my house while my caregiver cared for me if and when she felt like it!” Cameron, C5

“My caregiver has been living with me for 12 years. Every now and then I use respite hours provided by Medicaid and spend a few days in a nursing facility to give her a vacation, and twice a week my daughter or niece will pick up a shift. Over the years we have become wonderful friends. We take trips together with our grown kids and volunteer in the community together.” Erin, C6               

Caregiver Hiring Tips

When placing your ad for help give a very detailed job description. Clarify all aspects of care expected and needed. If you want experienced help, mention the training desired. Do you prefer a CNA (certified nursing assistant), LVN (licensed vocational nurse) or a HHA (home health aide)? Remember that you’ll have to pay for experience.

Make sure to give a detailed description of your personal care and transfer process. What about transportation? Will you need them to drive you anywhere? Detail what housework or help with the pets you may need. Do you mind smoking? If you are hiring live-in help describe the atmosphere desired for your home. Be very clear about the rate of pay and hours needed.

When interviewing, ask a lot of questions. Why are they interested in this type of work? What kind of clients do they have experience working with? Is there anything in the job description that they are uncomfortable with? Make certain to write out a contract which includes the job description and the personal information of the caregiver as well as wages and grounds for termination.Make your expectations clear and provide adequate training. Discuss problems when they arise and come up with a solution together. It takes time to establish trust. The higher the trust, the better the relationship. Trust comes through honest and open communication. If the attendant is doing a great job, be sure to praise them.  

Don’t get taken advantage of. Some individuals may seek employment but not have true interest in or passion for the work. It’s impossible to know how compatible your caregiver will be with you until you meet and give a shift a shot. Caregiving for a quadriplegic is hard work. It requires compassion and a strong work ethic.

“It’s crazy how many caregivers don’t actually CARE about people. Why choose a career you have no passion for? If you can just skip a shift for personal reasons without caring if your patient is laying in soiled sheets, you shouldn’t be a caregiver! I had a caregiver who didn’t listen to me and always ended up hurting me. Once she even pulled my catheter out! She wanted to rush through my care and I always paid the price. I think some caregivers think they don’t get paid enough, so they do a half-ass job. If I could pay the more I could. No price is really too much to get your ass wiped when you can’t wipe it yourself!” Corbin, C4-6 

“My worst caregiver ever was an alcoholic. In my little rural town we don’t have a caregiving company so I was just hiring people off social media and friends of my friends. This lady would stumble in drunk around noon to finally get me out of bed. I had to re-train her every day. Some nights it was nearly midnight when she finally came to put me to bed. She was probably on drugs and I know she stole my pain medication. She was even a CNA, but I know now why she didn’t have a job.” Carmen, C7

I hired a few caregivers with drug/alcohol abuse problems myself and paid for it. They sometimes showed up hours late or not at all. One administered too much medication. Another took advantage of my vehicle. Many caregivers tried a shift or two and changed their minds but some didn’t bother to let me know that’s what was happening. Hiring a professional with good references is one way to weed out the bad ones, but they’ll expect a good salary. Check into the state department of health or long term agencies. They could help find caregivers for you as well.

Studies have shown that female patients and female caregivers report more distress than their male counterparts. Female caregivers have the highest distress of all. While most caregivers are women, some men choose to work in homecare, too.

“I wasn’t comfortable with male caregivers until I went into assisted living, where I had no choice. Once I got over feeling awkward, I realized that I enjoyed how they worked. Surprisingly, they tended to be really gentle physically, and tended also to be more patient and easy-going, conversational. It was also convenient that they were strong!” Melody, C5

Because of the heightened intimate exposure on both a physical and emotional level, professional boundaries between quad and caregiver may be stretched. If you’re uncomfortable with the way a caregiver is speaking, acting or touching you, communicate this immediately.             

Caregiver Care 

“An incredibly HUGE lesson I have learned being a high level quadriplegic and paralyzed from the chest down is that life really isn't about me. While it is definitely nice to think that I can do whatever I want and that people are here to cater to my every whim when they help me, well, that's simply not the reality of the situation. Even though I do employ people to help me and I have family help me; I have to be considerate of everyone's feelings, times, emotional states, etc. 

It's really about a give and take. Sure I want to live my old life the way I used to, but that's simply not my reality. I can fight against it mentally all I want, but if I'm going to live some semblance of a happy life I have had to figure out how to adapt. Adapt or die as they say. Facing tremendous adversity my life has really helped me grow as a person though. I have learned to give back to others as people have given their time to take care of me over the years. It's a different kind of existence and one that's not always fun, but my life is, for better or worse & more often than not, focused around those who help me.” Ali, C5-6