IN NOVEMBER 2019, my 92-year-old widowed mother took an uncontrolled trip down a flight of wooden stairs in her home and got a helicopter ride to the regional trauma center.
Before her fall, we had a tenuous but semi-functional system of care in place. But the chaotic aftermath plunged us into unknown territory and claimed incalculable amounts of time, money and other resources from her caregivers. We spent months struggling with a new, impossibly complex set of rules and referees.
A few short weeks after her accident, Mom’s rehab benefits approached exhaustion and we were summarily advised of her approaching discharge date of Dec. 21. She had regained a fraction of her cognition and mobility but was clearly unable to manage her own day-to-day needs at home.
A moment of choice had arrived. Medicaid rules required that she enter a long-term-care (LTC) facility directly from inpatient rehabilitation. If we took her home, even for a day, she would need to experience another health crisis and inpatient stay before she would again be eligible for LTC benefits. We—her children—agreed that it was time for LTC.
You need to be all but broke to get Medicaid assistance, at least in Maryland. My mom was receiving a small railroad pension, which covered about 85% of her living expenses prior to her accident. The rest hinged on kids and grandkids, who had for many years kept her afloat with careful attention to her needs and expenses. But that pension—and even her small life insurance policy with a tiny cash value—became a target when we applied for Medicaid benefits.
The pace of the Medicaid system is incomprehensibly slow. While Mom’s state benefits were applied for and under review, she was accruing costs of about $400 per day in professional care and housing. A number of her kids scrambled to cover these expenses, along with the costs associated with filing for state benefits using the required 17-page application. The three filing options, listed in order of increasing expense and probability of success, are:
Given the urgency of our situation, we chose the third option, with an engagement agreement dated Dec. 9, 2019. The hat was passed among the family, and those who could contribute to the endeavor were generous.
A Medicaid applicant has to submit an extraordinary amount of data. Thankfully, Mom’s financial life was simple and I’d been carefully filing away the relevant documents for years. Still, gathering the requested items took dozens of hours over a period of weeks. Finally, the application was filed on Jan. 8, 2020.
While waiting for Medicaid approval, Mom’s medical expenses continued to accrue. For us, there was a provision known as PEME, short for pre-eligibility medical expense, that covers costs incurred after the date of application but before the date of approval. To be eligible, these expenses must be outstanding at the time of approval, meaning many of them would be well overdue prior to Medicaid coverage. As demands for payment became more urgent and threatening, I resisted the urge to simply pay them in an effort to reduce the noise in my head. This turned out to be the right financial decision.
On Jan. 10, I received a notice of “Request for Information to Verify Eligibility” from the Medicaid case manager. The request was for Form DHMH 257, or “Long Term Care Activity Report,” from Mom’s LTC facility. It’s essentially a detailed summary of the services she was receiving day-to-day, establishing her condition and need for professional care. This form must be provided by the care facility directly to the Medicaid case manager.
We forwarded the notice to multiple administrators at the facility, first by email and then in person. None of our emails or phone messages received responses over the ensuing six weeks. There’s apparently no incentive for the facility to produce the form, as the folks there are pleased to continue to charge the patient for services provided. We received a notice of ineligibility from Medicaid on Feb. 25, 2020, because the requested information hadn’t been provided. Mom’s attorney stepped in with some very specific demands and threats, and eventually the proper form was produced. This may have been the most valuable service that the attorney provided.
Notice of eligibility was finally received on March 13, more than 60 days after the application was filed. I finally slept through the night for the first time in weeks.
Institutional LTC is imperfect. This is a very generous statement. The staff members at the facility were mostly polite and competent, but significant medical mistakes were made and needed care wasn’t always provided in a timely manner. My daughter Leah, who was employed at a respected LTC facility for years, helped the family to square its expectations with reality. We learned that even better facilities are understaffed, plus the staff is typically underpaid. Fortunately, Mom had visits from family members every day without fail. We were able to fill in the gaps in service and advocate for Mom when care was slow. This was not the case for all residents, some of whom saw no visitors for days or weeks on end.
Then COVID-19 hit. Mom’s daily visitors went from early and often to zero. In four short months, she had gone from ruling the universe from a recliner in her home to helpless dependence on overworked strangers. She was not pleased with this arrangement and aired her objections to anyone who would listen. This increased the emotional load on her already distressed family. Her 93rd birthday was celebrated on May 5, with her masked family on the opposite side of an exterior window.
While our family was struggling to understand and adapt to the chaos that engulfed us, Mom’s assiduous great-grandson Brooks discovered a recent, little known change in Medicaid options. This change provided an opportunity to transfer a portion of her benefits to home-based care while still maintaining full eligibility. This had clear advantages for Mom and for the state, but meant much of her increased day-to-day care would fall back on the family. Brooks carefully navigated yet another complex application process. Some gracious volunteers worked out the details, and Mom returned home on July 31. Home-based care is now provided 24/7, mostly by unpaid family members. Professional care is available for a few hours each week to help with the heavy lifting. Mom is glad to be home and the costs to the state are much reduced.
It pays to make friends before you need them. Care for our aging mom, in her aging home, has fallen disproportionately on a small fraction of her large family. It isn’t clear how long we can continue to provide the needed care, or how those needs will change, or when this part of the story will end. Could my parents have predicted and prepared for this situation? I don’t know. But my humble suggestion is this: Strengthen yourself and your family—your human capital—in preparation for challenges you can’t yet imagine.
When not paddling, biking or shooting, Phil Dawson provides technical services for a global auto manufacturer. He, his sweetheart Donna and their four extraordinary daughters live in and around Jarrettsville, Maryland. You can contact Phil via LinkedIn. Check out his earlier articles.