On Tuesday morning, I awoke to an email announcement from the Democratic Senatorial Campaign Committee that the budget President Trump proposes calls for $800 billion in Medicaid cuts. In other news reporting I’ve read that the actual Medicaid cuts will total more than $1.4 trillion. Both numbers are, for me, incalculably large. I can only vaguely imagine what such cuts will mean for the biggest category of recipients of Medicaid funding – the nursing homes I have been writing about for several months.
Many of us will find it difficult to see how these proposed Medicaid cuts would affect our lives. We are not among the wealthiest One Percent, nor are we living below the so-called poverty level. We are not yet very elderly, or poor or disabled. In the moment, we feel somewhat secure. We have our modest retirement savings, our mortgage-free home, and (if we have been really careful) a small amount of long-term care insurance. Our health insurance benefits are covered by Medicare and a supplement program that we purchase at what we consider a reasonable price through our former employer, or perhaps through AARP (American Association of Retired Persons). Though we are part of the dwindling middle class, we should be safe, at least for the time being. Cuts in Medicaid won’t affect us, right?
Consider this true story – one that is close to home for me as it describes what happened to my mother and father-in-law, Ruth and Roger, at the end of their lives.
Roger was an aircraft engineer for most of his career. He worked for well-known aircraft companies and enjoyed a middle class income. He and Ruth, a homemaker, had two children, Christopher and Susan. When Roger retired they moved to a lovely Maine town, purchased a small “Cape” house and remodeled it themselves, surrounding it with a beautiful yard where Ruth cultivated her gardening skills. They had a quiet life, participating in community gatherings, volunteer activities and the church. Roger continued to work part time well into his eighties repairing screens at a nearby hardware store. It gave them a little extra income to supplement his pension and their Social Security. They did not live extravagantly, seldom traveled, economized on everything, and saved their money. They had, perhaps, 20 years of comfortable retirement before dementia set in for Ruth and Roger’s health began to decline rapidly.
When their daughter and son stepped in to make decisions for their healthcare, Roger was in a rehab facility after a long hospitalization and Ruth was placed in respite care since it was unsafe for her to continue living alone in their home. Christopher and his wife were already caring for his wife’s mother in their own home and Susan was working full time and owned a house with several flights of stairs. Neither had the ability to bring Ruth and Roger home to live with them. Roger died soon after Ruth was permanently placed in “residential care” at a privately funded eldercare facility. Chris and Susan sold the parents’ home, netting about $250,000 in profits. These resources, plus Ruth’s and Roger’s modest savings, were dedicated to covering the cost of Ruth’s care. The facility offered good nursing; the atmosphere was compassionate and respectful; and Ruth ultimately settled in and felt comfortable and at home.
Within little more than two years the resources from the sale of Ruth’s and Roger’s home as well as their savings were exhausted. The facility notified Chris and Susan that Ruth must be moved elsewhere immediately. Susan and I began a long and tortuous search for a nursing home placement near our home in Massachusetts, while Chris undertook the gargantuan feat of completing the extensive paperwork to document her qualification for Medicaid funding. Ruth was 90 years old and destitute. She had no income other than her meager Social Security check.
It took many months to find a nursing home that would admit her. Barriers to admission included: her lack of private funding; her residence outside Massachusetts; the unusual circumstance of transferring her from a nursing facility rather than a hospital; and finally, the possibility that she was too high functioning to qualify for nursing home care. I remember arguing with many admissions directors that while Ruth may be able to complete most ADL (Activities of Daily Living) tasks in her “residential” placement, the moment this victim of dementia moved from a familiar setting to a new one these skills would deteriorate rapidly and she would immediately qualify for nursing care. Finally, an admissions officer offered us an opening. Ruth’s Medicaid funding was approved, and we moved her to a nursing facility near us where we could visit her several times a week, advocate for her care and offer her family support, though, by then, she hardly knew who we were. My predictions had been accurate, the move from one facility to another in her delicate mental state caused her great emotional distress and her ADL skills went downhill drastically.
I don’t know what we would have done had it not been for Medicaid, and for the nursing home that was willing to accept her as a Medicaid patient without any private funds. Ruth lived another two years, steadily declining, receiving the kind of mediocre care I have described in previous articles, despite our active advocacy and intervention.
This story had a far better outcome than we can expect in the future for similar “middle class” families if the President’s budget cuts to Medicaid are adopted and the Affordable Care Act is dismantled. Will there be nursing homes to care for our parents or for us at the end of our lives? With their funding drastically cut, how many will go out of business, leaving only privately funded facilities for the wealthiest? Will we regard the social safety net of Medicaid with such indifference, or even scorn, when it is no longer there to catch us as we fall from our precarious middle class tight rope?