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What Does It Mean to Help? By Kelly McKee
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What Does it Mean to Help?

One Woman's Perspective


By mid-July in central Pennsylvania, summer is in full swing.   As a mother of three, I don't let my disability interfere with summer fun. My 13-year-old twin girls, host sleepovers, we take day trips, and I am often running kids to the pool or Hershey Park. I use a power wheelchair, drive a handicapped accessible van, and receive help from a caregiver to keep up with my kids and remain healthy.  Maybe though, I am the exception to the rule when it comes to how my state provided caregiver must function within my busy life. However, I know I am not alone in wondering at times what home healthcare agencies, receiving state funds to provide disabled Pennsylvanians with quality home care, consider helping when providing caregiving services?


As a single parent living with a disability, I am very grateful to the taxpayers of Pennsylvania for providing funding for caregiving services. My disability is such that if I did not have the opportunity to receive home health care assistance every other day, I would need to live in a care facility such as a nursing home. So, it is with great appreciation in mind that I discuss the topic of caregiving and what it really means to help someone.


It saddens me to say that many home health agencies have a distinct lack of regard for the feelings of their clients, and at times are blatantly disrespectful to clients and their families.  One specific area that is especially concerning and very relevant to client safety is the policy of some agencies to send caregivers to a home without notifying the client that the caregiver is coming. Unfortunately, on several different occasions, my home health care agency has sent caregivers to my home without notifying me that the caregiver was scheduled to work, even after I expressly requested that no one was to be scheduled without my permission.


In one incident this summer, I was surprised by a young girl who showed up at my home one morning while I was transferring into my wheelchair. She entered my home after just a brief knock on the front door.  She proceeded through my living room right into my bedroom.  She was not dressed in any type of agency uniform and had no identification. I had received no notification from the home health agency that she was coming to provide a service.  I had never met the girl before, yet there she was already inside my home with my kids and me, and I was in a vulnerable position transferring into my wheelchair. I was not properly dressed for the day, nor were my kids, and in a short amount of time, my kids' friends were scheduled to arrive for a planned activity.  I was expecting my primary caregiver at her regularly scheduled time.  However, the girl in my home was a stranger to me, and I the fear that I felt for my children and I was real.    


Even today, as I think back, the situation makes me feel uncomfortable. Can you imagine waking to a stranger in your home?  For safety purposes, clients must be notified in advance when a caregiver is scheduled to be in their home. However, agencies are well aware that they are providing much needed services to most clients.  Unfortunately, there are times when agency office staff wields the position of power they possess with an attitude of arrogance.  With regard to placement and training of caregivers, agency office staff often makes uninformed decisions that place agency needs above the needs of the clients.  Coordination of care between agency office staff, clients, and permanently placed primary caregivers is a necessity in providing quality home health care to clients, many of whom are the most vulnerable of persons within our society.


Receiving a caregiving service should not place your safety at risk. Yet, often clients receiving services are taken advantage of, abused, and robbed. So in terms of the agency itself, what does it mean to help?  Helping clients would mean respecting their need for privacy and the need to feel safe.  Waking to a stranger in your home does not make you feel safe.  A client should never be faced with the decision to open his or her door to a stranger said to be sent from an agency as a caregiver.  No caregiver should ever be told to walk right into a client's home without the express permission of the client. And I would assert that the client and caregiver should be given the opportunity to speak by phone in advance of their meeting so that the client at the very least might recognize the caregiver's voice. A phone call is such a quick and simple means of communicating with clients and a call is a task that takes a minimal amount of time to accomplish.


In some circumstances, the agencies may depend upon a primary caregiver already placed with a client to introduce and train a new caregiver. However, it is still imperative that the client be contacted and consulted with, by the agency office staff, as it should be the client’s choice as to how and when new caregivers are introduced into his or her home.  Ultimately, agencies must realize that helping clients means empowering them by including them in their home health care and that a large part of providing quality home health care involves helping clients feel safe and secure.   I would suggest that home health care agencies consider adopting a clients’ bill of rights that assures clients that the agency will place the needs of the client before the needs of the agency, that the client’s need to feel safe will be considered in all decisions directly affecting the client’s care, and acknowledging that in all possible cases the client should be involved in coordinating his or her care.  Also, quality assurance measures must be an important part of agency protocol.  Office staff must notify clients when a caregiver is scheduled in their home, especially untrained caregivers who are new to the client.  If the caregiver is a stranger, agency office staff must take proper measures to introduce the caregiver to the client and consult with the client as to how to train the new caregiver in the client’s home environment.


Startled as we were, my family and I continued on with our summer fun, and, with the help of my primary home health care aid, I got my girls and their friends off to Hershey Park that hot summer morning.  Afterward, I felt very badly for the caregiver who had startled us.  She thought she was “helping.”  However, the agency office staff must realize that too truly “help” the one being helped must share in the experience to reap the full benefit.      



---Kelley McKee