Until 2014, Therese’s parents provided her care, foregoing any outside help. In 2015, with her parents both in their 80s, Therese moved in with her sister Kathleen. She enrolled in a Medicaid Long-Term Care program (LTC), a program that provides needed home health care to individuals at risk of institutionalization. Through this program, Therese and her family hired a caregiver for the first time.
While Therese is grateful for the LTC program, serious problems with the program leave her at risk. Chief among these challenges is the low wage-- just $10.79 per hour-- paid to her home caregivers. At that low rate, most aides don’t stay for long. Thus, in 5 years, she’s had approximately ten different aides. And because Therese’s care is complex, Kathleen and Therese must train every new aide. Losing a new aide every handful of months is enormously stressful and exhausting.
Even more stressful is the fact that Therese has twice been erroneously terminated from her Medicaid LTC benefits, most recently in July 2019. Even though there was no dispute that the termination was an error, correcting it did not happen quickly. After three weeks without pay, Therese’s aide was forced to quit, and Kathleen and a second sister were forced to take over full-time care. Their own lives and jobs were put under significant, unnecessary stress as they cobbled together a schedule of caring for their sister.