Jennifer Corum lives in the Tuolumne County city of Sonora where she and her husband care for their 7-year-old son, Jackson. Jackson was born with cerebral palsy and spent the first year of his life in a series of Bay Area facilities. His parents, both medical professionals, would make the trip to see him—over two hours—every weekend. When they brought him home, he needed round-the-clock care including breathing treatments, medications and servicing Jackson’s ventilator and tracheostomy and gastrostomy tubes.
Though Jackson qualified for in-home nursing, his family soon found that there simply aren’t enough in-home nursing staff to fill the need in rural areas of California. They had to accept that Jackson’s care would be their responsibility alone. Jennifer, who had previously worked full time as a clinical lab scientist, became Jackson’s primary caregiver through the state’s IHSS program.
For Jennifer’s family, the IHSS program has been a lifesaver. Though Tuolumne IHSS providers are paid only a modest $11.50/hr, that pay allows Jennifer to give her son the highest level of attention and care possible—as well as knowing that he is surrounded by people who love him. And being a member of her union UDW allows her to stay connected with other caregivers and receive free help in navigating the sometimes-confusing IHSS system.
But if the present is taken care of for Jennifer and Jackson, the future remains uncertain—and more than a little frightening. For parent caregivers like Jennifer who have based their child’s care on their own ability to provide it, imagining what lies ahead shows why we cannot, as a state, base our long-term care planning solely on family caregivers.
“We can take such good care of him, but the day will come when we are physically incapable of caring for him,” Jennifer says. “What happens then? That’s terrifying.”