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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.
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Oh my. Thank you for this excellent article, but it set off significant PTSD for me! I’m glad you’ve worked out a way through. In the case of my mother, not only did we have the similar rude shock of getting an abrupt notice of Medicare rehab benefits terminating well before any of us thought she was ready, but we had the additional incredibly stressful experience of trying to navigate the (expensive) LTC policy she had carefully bought and loyally paid for many years. In the end, not only did the LTC insurance not pay, but the insurance company had the shameless guts to try to bill me for her premium for the period one month before her death (while she was already in the facility I was trying to get them unsuccessfully to pay for) and extending five months past her demise. Whatever was left of my temper snapped for sure when I got that notice. Getting oil and frail is not for the feint of heart… and families need a lot of resilience too.
I have had similar problems with the LTC insurance policy for my mother. The insurance company eventually pays what they owe however, not before making you suffer untold aggravation. They make sure that it will cost you many times more than the amount of money you will eventually receive. I have been fighting with them for more than 3 years now. One needs to have quite a substantial buffer for the 6 or more months it takes to get any of the money you are owed out of them. Every month or so there is another issue that needs to be addressed that will again take another 6 plus months to resolve. Just keeping track of all these problems is a paper work nightmare. I can only come to the conclusion that once you give ANY money to an insurance company for any type of insurance it is there’s to keep! There only job is to then not give ANY of it back to policy holders. LTC insurance is a scam to fleece the unsuspecting and anyone who purchases it is a fool!
Phil, thanks so much for posting your experiences, this provides such valuable insight into a very difficult system. I’ve recently had to go through some similar issues, though not as comprehensively stressful as what you’ve shared. Best of luck as you work through the aftermath.
Thank you RA. It’s remarkable to me how little insight there is into a system that consumes so many lives and resources. The abdication of responsibility in the current system leaves a big opportunity for someone willing and able to create better solutions. Thanks for reading.
I’m so sorry you’re having to go through this ordeal. I can hardly imagine the stress you and your family must be experiencing. And it’s tragic that your mother wasn’t getting high quality care during such a tumultuous and perilous time. I don’t want to get political, but your story highlights how desperately our country needs healthcare reform, and how dire our long-term care situation is.
Both my parents and myself still retain our citizenship in Argentina. As dysfunctional as that country is, its healthcare system is vastly less complex and more accessible than in the US. My parents plan on moving there when they can no longer care for themselves. My 99-year-old grandmother with Alzheimer’s has two full-time caretakers who live with her and are unbelievably loving. In the US, that quality of care would probably cost more than $100,000 a year. In Argentina, it is absurdly affordable (at least for people with American salaries).
The aging of the global population is going to present major challenges for all of us, both the young and old. As a society, we need to take more steps to prepare for this challenge before the situation become even more critical than it already is.
Thank you Thomas. The billed cost of housing and general care was ~12,000 USD monthly, before any medical treatment or therapy. And additional unspecified services were billed for routinely, with no response to billing inquiries. A system this complex is no doubt filled with perverse incentives. Repairs are urgently needed, as you state.
Home health has become an increasingly popular alternative due to COVID is also very expensive. The median national average cost for a home health aide is $4,576/month, which assumes 44 hours of care. Extrapolating to 24/7 care brings the cost to $17,472/month or $209,664 per year.
Oof, those are highway robbery prices. I wish I knew what the solution to this is, but the healthcare system in the US is so Byzantine that I wouldn’t even know where to start. There are so many layers of middlemen and bureaucracy in the US healthcare system that it’s difficult to identify all of the inefficiencies, and even harder to implement solutions. Hopefully things will be a little bit better by the time my parents are old.
Government can and does make things too complicated and less effective…great article.
Phil – great post. My heart goes out to your family and all the other families that struggle to manage long term care. Our family has had our own LTC challenges. The one positive is that we met quite a number of fantastic folks who helped us with care giving. Our family remains close to several of these kind people even years later.
Thanks John. In fact, we did connect with some others who were trying to find their way just as we were. It was good to share experiences, resources, and hope.
Wow! Thank you so much for this post. I’ve learned a lot from Humble Dollar over the years but this is the first one I’m printing off as well as forwarding to my family. I’m sure there is so much more you left out, but what you included is eye opening. Best wishes to your mother and thank you!
Thank you for your kind comment. I sincerely hope this post will help others in some small way. Thank you for sharing.