Marcia Spaise went from a full-time team truck driver to spending her days and nights taking care of her son Sam after an automobile accident left him a quadriplegic, with a traumatic brain injury.
Initially, Marcia took time off and looked for a way to balance her transportation career with her new role as caretaker. She hired outside personal care assistants (PCAs), but realized the best care for Sam would be her own.
“The PCAs could not do the third shift [overnights] needed for turning my son to prevent bed sores (which is required every two hours throughout the night). Some PCA’s were not strong enough to transfer my son, and one person dropped him.”
As a driver who spent most work time in other states, she couldn’t just clock out and run home when there was an emergency with Sam or if a PCA did not show up.
“I immediately realized that having an outside PCA was problematic and would not contribute to Sam’s development. I decided to retire the truck” and become Sam’s PCA.
Minnesota’s personal care assistance program provides persons with disabilities assistance with “activities of daily living,” including eating, toileting, grooming, dressing, and bathing.
Marcia’s situation is common among families who have loved ones with disabilities. Often a child’s care forces a parent to leave the workforce, or a parent’s care forces a child to leave the workforce.
This program has helped families recover a portion of their lost salaries. Family tends to provide better care at a more cost efficient rate than outside PCAs or other nursing care options.
Minnesota is one of 47 states to allow family members to act as paid PCAs at rates and hours determined by the state on a case-to-case basis.
However, these payments have been cut by as much as 20%—a result of a conservative all cuts budgeting approach.
A parent or child leaving the workforce can devastate a family budget. The middle 50% of PCAs earn between $7.81 and $10.98 an hour, according to the Bureau of Labor Statistics. The number of allotted PCA hours per day generally grossly underestimates the 24/7/365 commitments involved. In Minnesota, the state caps hours at 275 per month.
While some family members continue work outside the home while serving as a PCA, most can’t juggle both commitments.
“It was not possible for me to continue holding a job outside the home and get up every two hours throughout the night to turn him/catheterize him,” said Marcia, whose salary diminished from comfortably middle-class to near poverty level.
In Marcia and Sam’s case there were some positive outcomes. With her help and intensive physical therapy, Sam has regained most of his brain functioning, earned his bachelor’s degree, and completed various physical tasks his doctors had deemed impossible.
Joe Haines, who receives PCA services from his mother and his daughter, speaks passionately about investing in relative PCAs.
He’s concerned that the 20% cuts will generate a “mass exodus” of family members out of the field. The system in general would be losing the services of trained, qualified, reliable PCA’s, straining and already meagerly staffed care provider network.
Dena Belisle, a PCA for her son founded ADENA, LLC, a home health care organization for family caregivers.
“We are parents first,” she says. “We are able to provide the best care and do preventive care, which ultimately costs the state less since we spot things much earlier than would an outside PCA who may not notice until the person needs to be hospitalized.”
Hiring non-related PCA’s to supplement family caregivers’ shifts is neither a viable nor effective solution in many cases.
“Most of my clients receive an average of 12 to 12.5 hours of paid PCA services per day at a maximum of 275 hours per month,” said Dena. When hiring a PCA from outside the home, the uncoverable “third shift,” usually requiring check-ins every two hours, would remain family members’ responsibilities and likely impede their productivity at out-of-home jobs.
More likely, families who are unable to continue as PCA’s, will need to investigate assisted living facilities such as nursing homes and adult foster care settings, options that may cost the state far more overall. The average assisted living facility costs $40,000 annually, while a semi-private nursing home costs $75,000.
Medicare doesn’t cover these costs, and Medicaid will cover them only after one’s savings have dwindled below the federal poverty level.
Strong policy must ensure not only the highest quality care, but the sustenance of those who care for people with disabilities.
“The last few years since the Pawlenty administration have been very tough. I took pay cuts; I took hour reductions, and now to imagine another 20% cut… There is no way we can financially make it,” said Marcia.
No matter what the cost, family members will continue providing the best care possible—tirelessly and courageously, and constantly. However, slashing the lifelines of dedicated family members is not a solution, and it’s bad economic policy.