In 2023, Brenda, a Salt Lake City native and single mother of a medically fragile child, was at risk of losing her home. Her son, Christopher, requires continual trach and vent care and receives private duty nursing through the state’s Medicaid program for his care.
Unfortunately, due to a limitation in Utah’s Medicaid policy, Christopher was receiving four less hours of care than were required based on his medical necessity. While advocates were working with the state to fix this discrepancy in nursing hours for Utah’s medically fragile children statewide, Brenda was struggling to make ends meet while still filling the gaps in his care. Over time, the lack of hours forced Brenda to make the difficult decision to dedicate more time to Christopher’s care and reduce her work hours. Unfortunately, this reduction in hours made it impossible to care for Christopher and herself financially, and she found herself caring for her medically fragile son in the middle of a Utah winter while facing eviction.
Thankfully, quick action from Gov. Spencer Cox and the State Legislature created a stopgap for funding of the private duty nursing program so that children like Christopher could receive immediate coverage for additional nursing care. This small increase in hours allowed Christopher and the state’s medically fragile children, who require significant nursing care to breathe independently or perform daily activities like going outside, to receive more clinical hours of care. The additional hours of approved care also help to reduce hospitalizations, while bringing some children home and off the statewide waitlist for care. In Christopher’s case, this small increase in hours made the difference for Brenda, who was able to work full time and keep a home for her family.
Most of us would agree that it is unacceptable for anyone to be in a position where they must choose between providing for their family financially or supporting their medically fragile loved one at home.
While this increase in hours was a life raft to Brenda and so many other families with children who need care like Christopher, there are still not enough private duty nurses in Utah to care for these children at home. This means that there is still a significant vulnerable patient population who remains in hospitals unnecessarily, occupying much-needed hospital beds.
The current situation has created an opportunity for Gov. Cox and the State Legislature to step in and fix the private duty nursing shortage through a rate increase for these critical nurses. By doing so, we not only promote a better quality of life for Utah’s medically fragile patients and their families, but we can also help the state save Medicaid costs by getting kids out of expensive hospital settings. The savings are substantial. Private duty nurse support at home costs an average of $520 a day compared to $3,500 per day in a hospital, a seven-fold increase.
We are calling on the State Legislature to please come through for private duty nursing patients and their families so that we can provide the care our most medically vulnerable patient population requires. Not only is this a sound economic policy for the state but, most importantly, it’s the right thing to do for our state’s medically fragile children.
Names above have been changed to respect anonymity. Maxim Healthcare Services is a member of the Homecare and Hospice Association of Utah, a statewide 501 (c)(3) advocacy organization committed to providing all Utahns with access to home and community-based services.