Ache of uncertainty: Aging parents caring for disabled adult children worry what’s next

Janae Harrington, 78, and her son Darby, 41. Janae cares for her son Darby but is trying to find sustainable plans for his future. (Courtesy of Janae Harrington via The Washington Standard)

Eighty-six-year-old Olympia resident Helga Teske thinks a lot these days about all the things she still wants to teach her son.

How to clean the two-bedroom house where they’ve lived for 45 years. How to take care of her garden, an 80-by-225-foot plot that she tends most days. How to cook – oats for breakfast, foods like chicken and rigatoni, vegetable stew and snapper for dinner. Which newspapers to read to stay up to date on current events.

Helga has been the sole caretaker for Julian, her 50-year-old son with developmental disabilities, almost his entire life.

But many birthdays and a few health scares later, Helga, originally from Germany and divorced, is looking at other care options for him. And like many aging parents caring full time for their adult children, finding a caregiver both she and her son are comfortable with is not easy.

As of June 2022, Washington had almost 10,800 people over the age of 40 who were eligible to receive care through state Developmental Disabilities Administration programs. More than one in five of these people still received support from a parent, according to the agency. About 150 of those parents, like Helga, are over the age of 60.

“I have to be the strong one,” Helga said. Though she often finds herself asking: “What am I going to do?”

Aging caregivers need more support

Caregiving is complex. How much care someone requires – and qualifies for under state programs – can vary widely depending on their disability. Some can live mostly independently, needing help only at night. Others need assistance throughout the day.

Meanwhile, across the U.S., the long-term care sector is underfunded and understaffed. And for many families, paying a professional in-home caregiver is too expensive to afford.

Parent caregivers serve as an important backstop.

But as America’s population trends older, caregivers are aging as well. “That is going to be a major challenge where a number of people with disabilities lose their supports,” said David Goldfarb, director of long-term support and services policy for The Arc of the United States, a group that advocates for people with intellectual and developmental disabilities.

For aging parents who are caregivers, it presents a heavy question: Who will look after their child once they are no longer able to?

“Something’s going to have to happen because a lot of us are going to be dying at the same time,” said 66-year-old Melissah Watts, who is the sole caregiver for her 38-year-old son Max, who has developmental disabilities.

Some look to other family members to step in. Some opt for group homes. Some hope that they will outlive their children so they can know that their son or daughter will always have care.

‘I like to have my independence’

In one of the last group homes that 41-year-old Darby Harrington lived in, he remembers being yelled at for little things that weren’t always his fault.

Darby said the caregivers would scold him for turning on the porch light at night when they were trying to save electricity. He said he was blamed for misplacing keys when he didn’t have them in the first place. He fought with his roommates and caregivers over politics.

When the COVID-19 pandemic hit, he moved back in with his parents in Spokane.

Now, his mom, 78-year-old Janae, is trying to figure out what Darby’s future will look like.

He needs somewhere he can be independent, she said, but he also needs support for his health issues, namely the diabetes that “rules his whole life.”

For the last 20 years, Darby has worked part-time at a local TV station in Spokane, most recently in the sales department. He coaches a softball team for the PACE program at Spokane Community College, which offers classes to people with cognitive or mental disabilities. Darby loves learning and writing – he currently has eight novels in the works.

“I like to have my independence,” Darby said. “I like to be Mr. On the Go.”

An apartment would work really well, Janae said, if Darby had a caregiver who could come over around dinner and stay throughout the night.

But Darby doesn’t qualify for that under a state assessment that is used to determine how much care someone might need and how much the state and federal government can help pay for it through Medicaid. His yearly assessment only qualifies him for 37 hours of care each month – mostly, Janae said, because the assessment doesn’t account for his diabetes.

Janae said she hopes he finds a place in the next three years or so. She wants to be around long enough to see him settled.

“We originally had a pact that we were going to go out together, maybe in a car wreck or something,” she said. Now, like Helga Teske, she often finds herself thinking: “What are we going to do?”

The limits of state support

This issue of aging caregivers is not new, said Shaw Seaman, an office chief at Washington’s  Developmental Disabilities Administration who oversees provider compliance and quality assurance. The state has resources to assist caregivers and families as they plan, he said.

Case managers can help coordinate services and consult with families to ensure they are planning ahead. The state also offers support to help people with disabilities learn skills needed to live more independently.

Most funding for these types of programs comes from Medicaid. And what families pay is typically based on their income.

The services available to families depend on a state needs assessment – like the one that leaves Darby ineligible for care that would enable him to live in an apartment. That analysis also determines how many hours a caregiver, including family members, can receive pay that is funded with state and federal dollars. Before becoming a paid caregiver, family members must fulfill a number of eligibility and training requirements.

Apart from family members, options for care include professional in-home caregivers or group homes. Seaman said the most important thing for families is that they are planning ahead.

But even though Washington is ahead of other states when it comes to caregiving support, resources are limited. It has been particularly difficult to retain residential care staff coming out of the pandemic, Seaman said.

Supported living facilities, group homes and state-operating living alternatives, which give people a path to live in private residences with up to three housemates, all saw spikes in staff turnover in 2021, according to data from the Developmental Disabilities Administration.

In 2021, these facilities saw turnover rates of 76% for the entry-level positions that make up most of their workforce, 42% for supervisors and 43% for nurses. In 2019, those numbers were much lower: 50% for entry-level staff, 25% for supervisors, 16% for nurses.

Wage increases and employees returning to in-person, full-time work following COVID-19 restrictions have helped keep turnover rates lower in 2022, the department said.

For disabled adults who are able to live more independently, money can be an obstacle.

The only form of income for many people with intellectual and developmental disabilities is often Supplemental Security Income payments, which will be $943 a month in 2024.

A December report from the Department of Social and Health Services estimated that more than 37,000 adults with intellectual and developmental disabilities in Washington are facing housing insecurity.

The Legislature this year increased funding to build housing specifically for people with disabilities. And there are some new projects getting underway. For instance, Parkview Services, a nonprofit that specializes in housing for people with developmental disabilities, announced Monday that they were on track to complete seven new homes that will house 35 adults by the end of 2024. But the added money and new development only go so far in meeting the needs of a growing population.

‘Not finished yet’

Helga Teske’s hope is that a family friend from Arizona, who Julian already knows, can move in and care for Julian when Helga cannot.

But before that can happen, the Teske’s garage must be converted into a one-bedroom apartment, and after years of renovations, multiple contractors and pandemic delays, the renovation is still not complete.

“We have been very, very, very patient,” she said.

Until then, Helga’s duties remain.

Some days with Julian are better than others, she said. On these days, Helga thinks to herself, “I get paid for this? To hang out with my son?”

He likes listening to music, often singing along to Mozart or American musicals. He knows the days of the week for any date in history. He’s memorized highways and cities across the country. He sends birthday cards every year to most people he’s met, though by now many have changed addresses. He loves cars; he prefers two doors to four doors. He works part-time at the Olympia School District where he helps with administrative tasks.

But bad days are becoming more common, Helga said. Julian can have mood swings that make caring for him difficult. He laughs at inappropriate times and gets frustrated easily.

Helga worries what will happen if Julian continues having more days like these.

“Nobody else is going to stand for this,” she said.

A couple of months ago, the two of them made a list of what to look for in a future caregiver.

Helga wants her successor to be properly trained to care for people with the physical and psychological needs that Julian has. But they also need to be patient, empathetic and have a sense of humor, the two decided.

For now, Helga sees just one option. “I need to keep going,” she said. “I’m not finished yet.”

by Laurel Demkovich, Washington State Standard

Washington State Standard is part of States Newsroom, a nonprofit news network supported by grants and a coalition of donors as a 501c(3) public charity. Washington State Standard maintains editorial independence. Contact Editor Bill Lucia for questions: Follow Washington State Standard on Facebook and Twitter.

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