PCA-Personal Care Assistance

Personal care assistance (PCA) services provide assistance and support for persons with special health care needs. PCA services do not require an order from a physician and are provided in the recipient’s home or in the community when normal life activities take him/her outside the home.

In most cases, recipients must have an assessment for PCA services by an assessor through a lead agency (a county, tribal government, or managed care organization).

If PCA services are assessed to be appropriate, most recipients are allowed to use the assessed services how and when they want for the duration of the qualified time. The recipient can often also decide which direct care staff will be providing the services.

Everly’s PCA Workers

Everly and her PCA worker, Grandpa Pete

Shortly after arriving home with Everly, our local North Dakota social worker presented us with a couple of different options regarding the in-home health care we would qualify for. Everly requires a great deal of medical attention so we made the decision that I would take a leave from my teaching profession in order to care for her. With my husband needing to return to work, learning that extra support was available helped ease some anxiety about caring for Everly on a daily basis.

With both my parents being retired teachers, we chose to hire them as our PCA workers. Although they are family, as long as they were not living in the same residence as Everly, they would qualify.  We felt this was the best fit for our family, being a loving and trusted relationship already existed.

Everly and her PCA worker, Grandma Nancy

We qualified for 43 total hours of in-home support. My parents are available on an as-needed basis and this has been extremely helpful! In addition to being wonderful grandparents, they assist with a variety of things in order to best care for Everly. My husband and I decide what duties they assist with. For example, when we first returned home with Everly, I often felt like so much time and energy was dedicated to my “nursing” duties. Just getting to be her mom was not always a reality. As I have become more comfortable with her cares, that has certainly changed. However, there are still times each and every day when my focus needs to be geared towards her care. During those times it is so helpful to have others around that can provide the stimulation and interaction that Everly needs and deserves.

Much of Everly’s medical cares require a very sterile and clean environment that requires her to remain very still. Having someone there to entertain and assist helps me focus on providing the safest care for her. It also speeds up the process so our busy little one can be up and moving as soon as possible!

Grandpa Pete, PCA carrying the emergency bag.

I field multiple phone calls  during the day from medical professionals regarding Everly. Having someone to care for Everly allows me quiet time to have those important conversations without distractions. My parents also help with various medical procedures that take place daily, including g-tube and ostomy cares, dressing changes, central line hook-ups, milk and medicine administrations, and catheterizations.

We also have to be extremely careful when we take Everly out, due to possible germs. If Everly gets sick, her body is not able to rebound like a typical baby would. Therefore, taking her to the hospital multiple times throughout the week in order to pick up her medications, medical supplies, and TPN is not an ideal situation. My parents run many errands throughout the week that Everly’s medical needs require. This is extremely helpful! If and when she is hospitalized, they are there to lend support, give us breaks, and simply love up on Everly. Often just bringing a great cup of coffee over in the morning makes the day seem a little better! Their job description varies and teamwork helps get the jobs done.

When Everly was discharged from the hospital, the hospital psychologist advised me to make sure and take care of myself! This is an important part being able to best care for my daughter. Caring for a baby with complex medical needs can be physically, mentally, and emotionally exhausting. I am her primary caregiver on a daily basis! There is no time for me to be under the weather, in any form. Having my parents there to support not only Everly, but our whole family has help
ed me to stay as healthy as possible, physically and emotionally.  I am fortunate to be able to have not only PCA support, but to have it in the form of family. It takes a village to raise any child, especially one like Everly!