What's a Personal Care Aide?

Personal Care Aides (PCAs) or, by another name, Home Health Aides assist me every day, 365 days out of the year. Personal Care Aides are so routine in my life that I often forget that others are not familiar with such a service. It is not uncommon for me to receive questions about my disability and naturally questions arise about the aide care that I require in order to thrive. What does life with PCAs look like? What’s involved?

Firstly, let’s define a Personal Care Aide. PCAs assist individuals with physical disabilities (like myself), those with chronic illnesses, and intellectual disabilities with daily living tasks in the home and throughout the community. Services support independent living, better quality of life, and often provide respite care for family members.

I was diagnosed as a little girl with a neurological disease called Limb-Girdle Muscular Dystrophy that has slowly and gradually taken my ability to move my legs, arms, and torso muscles independently. As my disease has progressed, I’ve lost the ability to walk and now utilize a power wheelchair. I have also lost the ability to lift my arms and legs on my own and now require assistance transferring and repositioning often. This created a need for others to assist me with everything from dressing and bathing, meal preparations, housekeeping and laundry, to accessing my community and work. At first, family members provided the care I needed.  But as my body slowly became weaker over the years and my needs demanded more time during the day, we soon realized hiring aides to assist and provide respite for my family was necessary. By hiring aide care, I was able to become far more autonomous of my family and in turn more independent; even as my disease progresses.

I hire my aides through a home heath agency in my community, which takes on the over-head work of hiring and recruiting staff. For instance, the agency provides the service of interviewing candidates, background checks, and licensing requirements. Some people choose to hire PCAs privately. There are pros and cons to each route. For some people it is a personal preference and for some people it is a financial decision. Financially, hiring aide care is expensive. Most insurances do not pay for care in the home. Some states offer programs to assist financially but requirements vastly differ by state and there can be lengthy waiting lists. The ability to pay for quality care can often determine one’s ability to live independently in one’s own home. Aids are typically hired by the hour and can range anywhere from $8-$20 an hour. For example, I utilize 4 hours of care a day, which calculates to: 4hrs/day x 365 days = 1,460hrs x $15 = $21,900 annually.

At any given time, I may have three to four different people working with me throughout the week. I typically have a month schedule formed in advance and keep in mind holidays and schedule changes as needed; always needing to think ahead. Over the years, I’ve had the privilege of getting to know excellent aides. Many of them have become family friends. Having an individual involved in the daily personal routines of life, you get to know each other well and form a bond. It’s not uncommon for me to have an aide with me during special events and family gatherings and my friends and family come to know the aide as well.

I’m thankful for quality care. It’s allowed me to live a healthy lifestyle, remain independent, and access my community and work. Personal Care Aides have made that possible.

- Elizabeth -

Comments

[Brandon]

Great information, Elizabeth. I've met one of your aides and I can tell about the bond you've formed with her.

[Denise DiNoto]

A good morning PA makes all the difference in the world! Glad you have a good crew. I use a Consumer Directed program and recruit, train, hire, supervise and manage my team. The Medicaid program which funds them does have restrictions but I can't afford the $48,000/year it would cost me to pay out of pocket for the assistance I require.