Into a caregiving void: Family members fill crucial role providing long-term care

Melissah Watts, 66, and her son Max, 38. Melissah cares for her son, Max, full-time. (Courtesy of SEIU 775)

Carol Colin didn’t ever think she would be a caregiver for her 68-year-old brother with disabilities and her 100-year old mother. 

But almost three years ago, her mother, who was diagnosed with macular degeneration two decades earlier, could no longer see well enough to pay bills or to drive.

“I need help,” her mom told Carol.

Carol, 71, and her husband, 85, left their life in Los Angeles behind and moved back into her childhood home near Tacoma with her mother and her brother, Cleora and Dale Colin. 

Now, she’s a full-time caregiver. And she’s grateful. Grateful for the cousins who drive them to appointments, for the neighbors who help watch her mom and brother when she gets groceries, for the “heroes” who helped install a ramp to the house so her mom can avoid the stairs.

“How lucky we are,” she said.

Carol Colin, back left, and her husband Ted, front left, help care for Carol’s 100-year-old mother and 68-year-old brother with disabilities. (Courtesy of Carol Colin)

She’s not alone. Washington has about 25,000 to 30,000 union-represented, paid family caregivers, according to Service Employees International Union Local 775. They care for relatives who are older and those with disabilities. AARP estimates there are 820,000 total family caregivers in Washington delivering 770 million hours of care annually.

“Family members make up a critical part of that workforce, often leaving other, better paid, better benefit jobs,” SEIU 775 secretary-treasurer Adam Glickman said.

Most other states have programs to compensate family caregivers, but Washington’s high wages, benefits and union representation make it particularly supportive. AARP’s 2023 Long-Term Services and Supports State Scorecard ranked Washington second overall in the nation for the best long-term care, in part because of its support for family caregivers.

But when it comes to supporting people with intellectual and developmental disabilities and those caring for them, Washington – like much of the country – still has work to do, said David Goldfarb, director of long-term support and services policy for The Arc of the United States. The Arc advocates for people with intellectual and developmental disabilities.

Washington, like many states, faces shortages in the professional caregiving field and a lack of support and housing for people with disabilities, making family caregivers even more crucial.

Caregiver pay and benefits are covered by a mix of federal and state dollars. Before becoming a paid caregiver, family members must fulfill a number of eligibility and training requirements.

The state Legislature this year approved pay increases for in-home caregivers, bumping starting wages to $21 an hour. Lawmakers also strengthened health benefits for caregivers, including for those with kids. Family caregivers can also receive time off, a small retirement benefit and professional training, Glickman said.

This year, the state budget also set aside $25 million in the Housing Trust Fund for affordable housing for people with intellectual and developmental disabilities – the most ever for this type of housing, which can be complicated to build and difficult to finance.

Despite these steps, more support will likely be needed in the years ahead, especially as more family caregivers age.

Goldfarb explained that the country’s system for helping people with intellectual and developmental disabilities once focused on institutionalizing those individuals. Now, the country focuses more on in-home care and services.

But these services are often underfunded and understaffed, he said, leading to waitlists, workforce shortages and many people relying on family for care.

“The problems that exist in Washington state are not unique,” Goldfarb said.

‘Weight of the world’

More than a decade ago, Melissah Watts, 66, quit her job to care for her son Max, 38, full time. Max was out of school, and as an adult, he didn’t have many opportunities for day care or other activities.

“I just couldn’t keep up,” she said.

A single mom, she struggled to find ways to pay for care for Max as well as her own needs. She had no savings, no health insurance and no paid time off.

As a full-time caregiver, Watts can often only leave the house for an hour or two at a time, and only if she can get her neighbors to keep an eye on her son. She is responsible for feeding Max, changing Max, entertaining Max and helping Max through complex emotions.

Max spends most of his time coloring, watching TV, living in a world where he’s both a Power Ranger and a Jedi, she said.

“His life and his world is pretty magical,” she said.

When the COVID-19 pandemic hit, Melissah and Max sealed themselves into their home.

Before they got their vaccines, Watts said they never left the house. She couldn’t bear the thought of one of them being in the hospital and the other not being able to visit.

“I felt the weight of the world,” she said.

At the time, caregivers like Watts were given hazard pay because many were considered frontline workers. She put that money into savings – it was the first time in years she was able to pile up some extra money.

In Watts’ view, SEIU 775’s push for better pay and benefits has helped her and other caregivers.

The union formed in 2002 but Glickman noted that most of its wins are more recent. Even in 2012, caregivers were only making about $10 to $11 an hour.

Glickman said the union will continue to press the Legislature for higher wages, with a goal of getting up to $30 an hour by the end of the decade.

‘Don’t give up’

Throughout Dale Colin’s life, he and his mom, Cleora, were active in the fight for more opportunities for Dale and more pay and benefits for Cleora

They traveled to Olympia to rally. They joined local community organizations that advocated for more support for families with children who have disabilities and hosted activities for their kids.

And now decades later, Carol Colin understands just how lucky she is that her brother was so involved in the community and that her mom asked for help all those years ago.

She often thinks about people who don’t have access to the services Washington offers, the support the caregiving union provides, the friends, family and neighbors she has nearby.

She often encourages others: “Don’t give up,” help is out there.

Carol doesn’t know when she and her husband will ever go back to Los Angeles. They still own their house there, but their likelihood of leaving Edgewood are fading.

A few years ago, Dale and his family planned for him to move to an assisted living facility. But after hearing stories from friends who’d had bad experiences in these facilities, he decided it wasn’t the best option for him, Carol said.

Carol doesn’t know what comes next. But she vows to keep her brother in the house they grew up in for as long as possible.

— By Laurel Demkovich, Washington State Standard

Read the Standard’s related coverage on caregiving here: Ache of uncertainty: Aging parents caring for disabled adult children worry what’s next

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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