OLYMPIA – Lindsey Topping-Schuetz remembers wiping tears from her eyes as she wheeled her son Owen through the hallway of Tacoma General Hospital, listening to claps and cheers from staff and family members after he spent 103 days in the intensive care unit for newborns. She remembers thanking the people who taught her how to keep Owen alive.
When Owen came home seven years ago, he required oxygen, a feeding tube and had handfuls of episodes that left him struggling to breathe while Topping-Schuetz rushed to blast oxygen in his face. The team that included 40 doctors who cared for Owen dwindled to a team of two: Topping-Schuetz and her husband.
“Now, doctors ask me how they can help,” she said. “I would become the expert.”
More than a dozen parents of children who have disabilities testified in front of the Senate Human Services Committee last week, pleading with lawmakers to pass a bill that would allow parental caregivers of children with developmental disabilities to receive payment.
Sen. Emily Randall, D-Bremerton, drew from personal experience as she proposed her bill to the committee. When Randall turned 18, she assumed the role of a paid caregiver for her younger sister, Olivia. However, since Oliva was underage, her mother, who had cared for Olivia throughout her life, was still not eligible for payment.
A companion House bill vying for similar changes has passed out of the Human Services, Youth and Early Learning Committee and has been referred to the Appropriations Committee.
Right now, state policy grants parents of an individual over the age of 18 to receive payment as their caregiver. However, parents of minor children cannot be paid for providing the same care.
Not only are parents of children with disabilities ineligible for pay, but finding an outside caregiver or one provided through Medicaid is hard and highly unlikely due to the labor shortage.
“Zoe’s best care providers have been family and friends,” Darci Ladwig testified sitting next to her 21-year-old daughter Zoe. “Challenges with provider training, availability and time commitment of that training has made it impossible for people who know and care about Zoe to get paid.”
Ladwig is a former employee of the Arc of Spokane, part of a nationwide organization that provides support programs and advocates for people with developmental disabilities and their families.
The Arc is key in supporting young families who are learning and caring for their child, Ladwig told The Spokesman-Review. They provide parent-to-parent support groups, day programs filled with inclusive activities for adults, financial counselors to help people who receive Social Security benefits and a plethora of helpful services.
“Learning from what other parents have done and tried is so important because the world of disability can be so isolating,” she said.
Parents can hire caregivers through independent providers like Carina Care or go through the Department of Social and Health Services to receive allocated hours of Medicaid or Medicare funding. Even if parents go through the DSHS Developmental Disabilities Administration, they have to search for a caregiver.
“We were told that anyone could be paid to work these hours, except for us, the parents,” Katie Scheid said while sitting next to her daughter, Millie. “We looked for caregivers to hire for six months. We didn’t receive a single applicant.”
Angela Ramos, a former Developmental Disabilities Administration case manager, shared a similar experience to Scheid. After posting a position in hopes of getting a caregiver for her daughter Ava that sat open for months, she had one applicant. Upon informing the candidate that Ava needed assistance using the bathroom and changing her diaper, she said. “I will more than likely be gagging, but I can do it.”
“Imagine for a moment the vulnerability of needing support in such an intimate part of your daily life, only for your caregiver to react with disdain,” Ramos said.
Last year, 1.4 million hours of approved Developmental Disabilities Administration caregiver time went unused because there weren’t enough caregivers, sending back over $25 million in both state and federal funds, according to DSHS.
Washington is in the middle of a critical nursing shortage, with eight nurses to every 1,000 people, Alexa Mason said, representing the Washington Chapter of the American Academy of Pediatrics. Other states have nine nurses per 1,000 people, totaling a shortage of almost 8,000 nurses in Washington.
“In the Spokane area there are no child care facilities for profoundly disabled children other than the hospital,” Deb Ritter testified.
In addition to the workforce shortage, women tend to shoulder the majority of caregiving work creating a women’s rights issue, Ritter said. Washington is benefiting from women’s labor, disproportionately costing women their independence, their jobs and their financial security.
If the bill passes through the legislature, the Developmental Disabilities Administration must submit a request to the Centers for Medicaid and Medicare services by Oct. 1, amending the Community First Choice Program, which provides services to disabled children within their homes, to allow payment for parents who care for their child with disabilities.