Our Stories

 The Care Agenda

William Reed – Placer County

William and Mary Reed had their first child, William Jr., in 1976. William, Sr. worked for Dupont, Mary was a schoolteacher, and their son was growing and developing as expected. But the Reeds’ world changed forever two years later when William Sr. came home from a work trip to find a distraught wife and his son standing in the corner, staring at the wall. Their son wouldn’t look at them and didn’t want to be touched. They took him to Johns Hopkins and, after a battery of tests, the Reeds began the autism journey that many families are familiar with: desperately searching for a cure, chasing every new theory of the disease, and consulting every specialist they could find.

When William Jr. was 10, the Reeds stopped looking for cures and focused their attention on meeting their son’s care and socialization needs. Through the years of research, trial-and-error behavior strategies, and networking with other families, the Reeds became experts in how to give William, Jr. the fullest life possible They had three more children and the family became vocal and active advocates for people with disabilities and their families. When William Sr., took early retirement, he became his son’s caregiver through California’s IHSS program and a leader in his union, the United Domestic Workers of America.

Clearly, William Jr. has received the highest standard of care possible: home care from a loving and engaged family who have had the resources to provide him with what he needs. But if the Reeds story perfectly exemplifies why family care is the gold standard for people with disabilities, it also illustrates the fatal flaw in a care system that relies on families: What happens when caregivers age and die? William Sr. is part of a work group of older folks who care for their adult children looking for answers and resources, but as William Jr. can’t live independently, the future is uncertain.

For the Reeds, William Jr.’s care is based on decades of studying how stimuli affect their son and what responses work. They know what calms him down and what he can handle. They know where they can take him and where they can’t. His siblings love their brother, but taking him in means making that choice for their spouses or future spouses. If no relative takes him in, he could be institutionalized and all those years of individualized care could be lost to a regressive existence spent mostly out of public.

William, Sr. is fighting to make sure that doesn’t happen.

 

“I’m sure he’s going to outlive me. The biggest concern now is who is going to care for him, provide him with the same quality of life that he’s enjoyed after my wife and I can no longer do it?”

Maile George – Contra Costa

Sixty-year-old Maile George is enjoying her retirement in the Contra Costa County city of Concord. Though she is blind and lives with insulin-dependent diabetes, her eight-year-old guide dog and occasional assistance from her mother allow Maile to live independently in a small condominium. She keeps a cute little garden with a kumquat tree and likes to prepare the kind of healthy, vegan meals that feed her body and soul.

For now, Social Security and an IRA from the years she worked at Bank of America pay her bills, but she’s worried that the uncertainty of our long-term care system could take away her treasured independence.

According to her doctors, her episodes of very low blood sugar could lead to serious health problems, including cognitive changes, down the road. And Maile has no children to take care of her. When her 86-year-old mother is gone, she wonders, how long would it take before someone would know if Maile was laying on the floor, incapacitated—or worse?

The last time Maile tried to get long-term care insurance, she was denied. She assumes it was due to the high risk posed by her diabetes. Because, though the Affordable Care Act eliminated the ability of insurance companies to deny health coverage to someone because of a pre-existing condition, long-term care insurers may still use health issues to deny coverage. She would like to think home care would be an option for her when she needs it. But, not only does she know there is a shortage of caregivers in the Bay Area, she has no idea how she would pay for it.

Looking ahead, Maile fears becoming totally isolated with nowhere to turn for help.

“I paid into the system all those years,” Maile says. “But now, being at this age with no kids, I realize there really is no safety net.”

Susan Lowry – San Diego County

Ten years ago, Susan Lowry was living the California Dream: a nice house in the upscale Sacramento suburb of El Dorado Hills, an RV, a boat. She worked as a freelance court reporter, earning about $50 an hour. Her husband was a very successful construction manager and their daughter attended the local schools where test scores are high and sports are king. Susan prided herself on the fiscal responsibility that allowed them to live well and save for the future. But Susan began to see gradual changes in her husband’s behavior. At first, no one, not even his doctors, believed her. But his cognitive abilities continued to deteriorate and, eventually, he was unable to hold down a job. In 2013, Susan’s worst fears were confirmed:  Her husband was diagnosed with FrontoTemporal Dementia (FTD), a rare form of dementia and she became his full-time caregiver.

Being alone with a partner whose memory of their life together was fading—combined with the stress of meeting his needs—became very isolating for Susan and she knew she needed more support. So she sold their house at a $50,000 loss and moved to the San Diego County city of Vista, where she had family that could provide backup care and be there for her when she was feeling overwhelmed.

Now Susan’s husband, who is only 60 years-old, is nearing the end stage of his disease where he will need institutional care. But how—or if—that happens remains unclear. He qualifies for a Medi-Cal bed, but none are available. Susan, who herself is only 54, has already spent down all of their assets. The only money left is in an IRA that will likely have to be raided though it is all Susan has to support herself in the future.

Like many people in her situation, Susan has become an expert in the details of long-term care finance and asset management. She has worked out several scenarios that get her husband the care he needs for this final stage of his life. But each scenario ends the same, heartbreaking way: with Susan penniless and alone.

“I’ve been waiting for this ball to drop for ten years,” Susan says. “I’ve done everything right, but I’m going to be broke.”

Jennifer Corum – Tuolumne County

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.”