My Patient Story
Congressional District: PA01
Issues and Challenges
Debbie has encountered: Caregiving, Nursing Home / Assisted Living
I sat stunned with my phone to my ear. My mother had been hospitalized in January, transferred to inpatient rehabilitation and then to a personal care home, in February, and I was just told that we needed to move her again to a facility that could better meet her needs. While living alone with independent mobility before the hospital, Mom was now wheelchair bound and oxygen dependent.
Choosing a care facility is challenging even in the best of circumstances. According to the American Health Care Association and National Center for Assisted Living, there are approximately 1,200 licensed personal care homes in Pennsylvania and nearly 35 licensed assisted living residences. Personal-care-home growth has exploded in my state and this myriad of “retirement home” options all advertise personal care and assistance for your loved one. There seemed to be no shortage of care options, so we started our search with the obvious financial and geographics parameters. But for our family, somewhat in crisis while acutely adjusting to our mother’s new medical reality and new to the world of elder care, the apples to oranges comparison of senior living communities became a dizzying exercise of false promises.
WHAT WE DID NOT KNOW AT THE TIME: ALR versus PCH
There are fundamental differences between a personal care home (PCH) and an assisted living residence (ALR). In Pennsylvania, both types of homes are licensed under the Department of Human Services, 55 Pa. Code, Chapters 2600, and 2800, respectively. The PCH and ALR designations were used interchangeably for many years, and indeed they were one in the same until 2011, when new regulations took effect which separated the two. What resulted were a number of regulatory differences, for instance, in physical accommodations ALRs are required to offer more space than a PCH and must provide a refrigerator and microwave. But most importantly, the scope of the care provided in each environment now differed according to license type.
An ALR is designed to allow individuals to age in place. Since care needs may increase over time, in addition to basic care outlined under regulation, an ALR is required to provide or arrange for supplemental services, such as specialized cognitive support, physical and occupational therapy, and skilled nursing services. In PCH regulations, however, basic and supplemental services are not outlined.
What our family learned quickly was that while some supplemental services may be available in a PCH, if care needs go beyond the scope of what can be provided, you may be asked to move your loved one to another facility providing a higher level of care. For us, this meant enduring two precious months watching our mother decline further without knowing we were in the wrong place. It meant more emotional upheaval for our family, countless hours searching for the new, “right” residence, and time lost from work to plan for and move her again.
A NEED FOR TRANSPARENCY
Adjusting to physical and cognitive limitations is hard for anyone, but for elders, leaving a long-time home and accepting care from strangers is especially challenging, let alone to be forced to move twice in a two-month span. While every residential option for seniors must be evaluated on its own merits and according to the explicit needs of your loved one, the evaluation itself could be streamlined if there was more transparency upfront on licensure scope.
If when looking for senior living options, search engines were required to direct you to either ALRs or PCHs based on license, the difference between these communities would have been clearer for our family. If the initial facility we chose was required to inform the PCH type and scope of their license, our mother might not have suffered two months of physical and cognitive setbacks. All of this might have been avoided with scope transparency.
Please join me in educating our congressional representatives on the value of accurate labeling and proactive education on PCH versus ALR license types in PA. For each of the 1,200 PCHs in Pennsylvania offering “assisted living” in their service descriptions there is the potential a family will go through what we did, and misconstrue the future care delivered to their loved one.
My Motivation and Inspiration
My inspiration for raising awareness about these issues stems from my mother’s and our family’s challenges in moving my mom into an assisted care setting that was unable to meet her needs.