Living With Polio

Home Sweet Home?

Nancy Baldwin Carter, BA, M Ed Psych, Omaha, Nebraska, is a polio survivor, a writer, and is founder and former director of Nebraska Polio Survivors Association.

FACT: 90% of Americans polled said they definitely do not want to live in a nursing facility.

FACT: 80% of Americans polled want to continue living in their own homes until the end.

With the total of elderly citizens on the upswing, innovative choices are beginning to pop up, attempting to offer new ways to allow us to live where we want to as age and disability continue to do their number on us.

Now comes PACE (Programs of All-inclusive Care for the Elderly), one more entry in community-based living that may keep many of us out of institutions. PACE is a government-inspired program, decades in the making, and now individually operated by a variety of non-profit companies throughout the country. Check to see if your state is one of the 30 currently involved.

Who Can Join? Those of us who are 55 or older and living in a PACE-served area can join if we meet our state’s Medicare and Medicaid nursing home level of care guidelines. This is determined by the 11-member Interdisciplinary Team in each local PACE area.

How Does This Work? Participants sign a contract allowing PACE to provide services. PACE is Medicaid and/or Medicare funded on a per person basis, rather than on a fee-for-service basis. Participants not on Medicaid would have to make up the difference, paying a monthly charge, plus a hefty Part D fee. Joining PACE dis-enrolls us from other health insurance, and PACE becomes our health and Part D insurer.

PACE also provides doctors, nurse practitioners, therapists, and other participants of a health-care team to work with us, rather than using the health professionals we had before. Members are free to leave PACE at any time, and PACE social workers will help with the transition of finding a doctor, health and medicine insurance, and other care and services.

What Do We Get? Most of us get to live in our own homes. A large part of PACE activity centers around an Adult Day Center, to and from which participants are regularly transported by PACE. Here we might find a chapel, TVs, a coffee bar, and a dining facility, all comfortably arranged for maximum sociability. Also at the Center is a Health Clinic, designed to provide primary care, dental and podiatry care, therapists, and all the exam rooms and equipment necessary at that facility.

Certain types of in-home care and services are provided, as determined necessary by the Interdisciplinary Team on a person-to-person basis. They decide what is needed according to the impact this has on our health. Participants requiring more care (about 7% now) go into nursing facilities, still under the auspices of PACE.

And Others? Family caregivers are not forgotten. At the Center, PACE offers support groups and even training in how best to deal with us in our homes. Overworked caregivers appreciate a much-needed break during the day while members are at the Center.

PACE presents an option. If we like it, it’s ours. If this isn’t our cup of tea, we move on to the next possibility.

Many of us who have spent a lifetime with disability might hope for more independence than I see in PACE. Personally, I’d like to be the one who decides what I do with my day—and with whom I do it. I want staying in my home to mean more than merely sleeping here—I want to live here. Eat here, Watch TV here. Get my laundry done here. I want my regular doctor and my usual pals. Give me my phone and my computer and let me soar. I don’t want to be left to rely upon the kindness of volunteers among my family and friends to get my house cleaned or my personal needs met. There must be a way.

We have tough choices to make. You know: “Old age ain’t no place for sissies.”
All columns originally published by Post-Polio Health International (

Tags for this article:
Independent Living
Quality of Life