Victoria Ellen Bruce, my mom’s younger sister, loved to play bid whist, hear a good joke and never saw a purse she didn’t need. “Oooh, girl, give it here,” she’d say on the regular.
Aunt Vicki, who lived with multiple sclerosis for most of her adult life, died last year at a long-term residential facility where not even my mother’s dogged and formidable advocacy kept her from being neglected.
Aunt Vicki died at a long-term residential facility where not even my mother’s dogged advocacy kept her from being neglected.
Most people living in long-term care facilities are on Medicaid. The program keeps them alive, paying for their care and housing. Shamefully, my House Republican colleagues just passed a budget proposal that cuts Medicaid to help fund tax breaks for wealthy Americans. Medicaid needs more money, not less.
The loss of Aunt Vicki has been painful for my family. My mother grieves every day. She thinks about her, talks about her and cries over her. Losing a younger sibling is incredibly hard, especially one as full of life, love, hope and faith as my aunt.
Just as Aunt Vicki’s nursing career was taking off, we would go out to places and she would fall. It didn’t happen often but, after too many of these unresolvable episodes, she went in for tests and was diagnosed with the debilitating and incurable disease that is MS. We were all shocked. No one else in the family had ever had MS. The falls became more frequent. She was not able to continue her nursing career. A walker led to a wheelchair, a scooter and eventually a bed at a long-term residential facility.
My aunt had the best caregivers in my grandmother (a nurse) and my mom (a Leo). They both fought hard against the system. Aunt Vicki loved receiving phone calls from me. We would talk, laugh and share stories. Eventually, she would tell me about some grievance with the nursing home, and then she would say how grateful she was for my mother for making it right. We should all be so lucky to have a caregiver as fierce as my mom.
In January, my mom came to Washington to watch me get sworn into Congress. Before she left, we discussed an article she had read about Melinda Lunday, who works for the Long-Term Care Ombudsman Program. The ombudsman’s job is to visit assisted living facilities and residential care homes to ensure that patients, our family members, are not abused. Through my own research, I read about a patient who died after mistaking cleaning chemicals for juice. In some facilities, elderly individuals or patients with disabilities have gone unwashed for more than a year, do not get their teeth brushed regularly or are forced to sleep overnight in soiled briefs.
The ombudsman’s job is to visit assisted living facilities and residential care homes to ensure that our family members are not abused.
Again, even with my mother staying as vigilant as she was, Aunt Vicki was neglected by the system. As the MS worsened, she needed more consistent and observant care, but her health and safety became increasingly compromised because she didn’t get what she deserved.
The disease eventually made her completely bedridden. Because she stayed in the same position for hours at a time without being moved, she developed bed sores that turned into open wounds. The first time mom saw one of Aunt Vicki’s wounds, she said, “It was so deep, I could see to the bone.”
My mother would ride the nursing home administrators. That is the life of a caregiver. She would visit regularly, write letters, make phone calls and chew people out; Vicki’s care would improve for a little while and then backslide again.
In 2023 and 2024, annual federal funding for the nationwide ombudsman program was set at $22 million and $27 million, well below what’s needed to fund the recommended ombudsmen-per-bed ratios. In 2023, there were 202,894 complaints regarding long-term care facilities, but only 4,943 ombudsmen staff and volunteers available to investigate.
That is a disgrace.
For many patients, their only advocate and hope is an ombudsman. Without them, many of our loved ones will suffer and die. That’s why it’s so unconscionable that Republicans are trying to slash Medicaid when it helps states pay for this critical program and others like it.
In 2023, there were 202,894 complaints regarding long-term care facilities, but only 4,943 ombudsmen staff and volunteers available to investigate.
House Speaker Mike Johnson, R-La., is lying when he says Republican cuts will not touch Medicaid. According to the nonpartisan Congressional Budget Office, it’s impossible to cut $880 billion from the House Energy and Commerce Committee budget, which Republicans want to do, without gutting Medicaid, Medicare or the Children’s Health Insurance Program. It’s mathematically unavoidable.
Caregivers like my mom and patients like my aunt deserve a Medicaid program that is properly resourced so that it works for those who rely on it. Government programs cannot be efficient if workers are fired, funding is slashed and services are eliminated.
I encourage people who’ve had an Aunt Vicki in their life to share their stories with their representative in Congress. We must breathe life into Medicaid with our experiences, so that everyone understands how vital this program is for our families and for the people we love.