Opinion: My 92-year-old mother fell down the stairs. Getting care was a nightmare

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In November 2019, my 92-year-old widowed mother made an uncontrolled trip up a flight of wooden stairs at her home and got a helicopter ride to the regional trauma center. Before its downfall, we had a weak but semi-functional care system. But the chaotic aftermath plunged us into uncharted territory and demanded untold amounts of time, money, and other resources from its caretakers. We spent months struggling with an incredibly complex new set of rules and referees.

A few weeks after her accident, Mom’s rehab benefits approached exhaustion and we were summarily informed that her discharge date of December 21 was approaching. He had regained a fraction of his cognition and mobility, but clearly he couldn’t handle his own day to day life. daily necessities at home. A moment of choice had come. Medicaid rules required that you enter a long-term care (LTC) facility directly from inpatient rehab. If we took her home, even for a day, she would have to experience another health crisis and stay in the hospital before she was eligible for LTC benefits again. We, his children, agreed that it was time for LTC. You have to be pretty much broke to get Medicaid assistance, at least in Maryland. My mother was receiving a small railway pension, which covered approximately 85% of her living expenses before her accident. The rest depended on her children and grandchildren, who had kept her afloat for many years by paying special attention to her needs and expenses. But that pension, and even his small life insurance policy with a small cash value, became a target when we applied for Medicaid benefits. The pace of the Medicaid system is incomprehensibly slow. Although Mom’s state benefits were requested and reviewed, she racked up costs of about $ 400 a day for professional care and housing. Several of her children rushed to cover these expenses, along with the costs associated with applying for state benefits through the required 17-page application. The three filing options, listed in order of increased expense and likelihood of success, are: Do it yourself Hire a Medicaid application specialist Hire an attorney Given the urgency of our situation, we chose the third option, with a contract of work dated December 9. , 2019. The hat was passed among the family, and those who were able to contribute to the effort were generous. A Medicaid applicant has to submit an extraordinary amount of data. Fortunately, Mom’s financial life was simple and she had been carefully filing relevant documents for years. Still, gathering the requested items took dozens of hours over a period of weeks. The application was finally submitted on January 8, 2020. While she waited for Medicaid approval, Mom’s medical expenses continued to pile up. For us, there was a provision known as PEME, short for Pre-Eligibility Medical Expenses, which covers costs incurred after the application date but before the approval date. To be eligible, these expenses must be outstanding at the time of approval, which means that many of them would be far behind before Medicaid coverage. As the 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 correct financial decision. On January 10, I received a “Request for Information to Verify Eligibility” notice from the Medicaid case manager. The request was for DHMH form 257, or “Long-Term Care Activity Report,” from Mom’s LTC center. Basically, it is a detailed summary of the services you were receiving on a day-to-day basis, establishing your condition and need for professional care. The call center must provide this form directly to the Medicaid case manager. We sent the notice to multiple facility administrators, first by email and then in person. None of our emails or phone messages received a response for the next six weeks. There is apparently no incentive for the facility to produce the form, as people are happy to continue to charge the patient for services rendered. We received a notice of Medicaid ineligibility on February 25, 2020 because the requested information had not been provided. Mom’s attorney stepped in with some very specific lawsuits and threats and eventually the proper form was produced. This may have been the most valuable service the attorney provided. Notification of eligibility was finally received on March 13, more than 60 days after the application was submitted. I finally slept through the night for the first time in weeks. Institutional LTC is imperfect. This is a very generous statement. The facility staff members were mostly polite and competent, but major medical errors were made and the necessary care was not always provided in a timely manner. My daughter Leah, who worked at a respected LTC facility for years, helped the family square their expectations with reality. We learned that even the best facilities are understaffed, and staff are often poorly paid. 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 attention was slow. This was not the case for all residents, some of whom saw no visitors for days or weeks. Then COVID-19 hit. Mom’s daily visits went from early and often to zero. In four short months, he had gone from ruling the universe from a recliner at home to a helpless dependency on overworked strangers. She was unhappy with this arrangement and voiced her objections to anyone who wanted to listen. This increased the emotional burden on her already distressed family. His 93rd birthday was celebrated on May 5, with his family masked on the opposite side of an outside window. As our family struggled to understand and adjust to the chaos that engulfed us, Mom’s long-time great-grandson Brooks discovered a recent and little-known change in Medicaid options. This change provided the opportunity to roll over a portion of your benefits to home care while maintaining full eligibility. This had clear benefits for Mom and the state, but it meant that much of her most day-to-day care would fall on her family. Brooks carefully navigated another complex application process. Some kind volunteers worked on the details and Mom came home on July 31st. Home care is now provided 24 hours a day, 7 days a week, primarily by unpaid family members. Professional care is available a few hours a week to help with the heavy lifting. Mom is happy to be home and the costs to the state are greatly reduced. It is worth making friends before you need them. The care of our elderly mother, in her elderly home, has fallen disproportionately on a small fraction of her large family. It’s unclear how long we can continue to provide 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 do not know. But my humble suggestion is this: strengthen yourself and your family, your human capital, in preparation for challenges you cannot yet imagine. This column originally appeared on Humble Dollar. It was republished with permission. Phil Dawson provides technical services for a global automobile manufacturer. He can be contacted through LinkedIn. Check out his previous articles.