By Consumers For Quality Care, on October 15, 2019
When Lindsey Topping-Schuetz’s son, Owen, was born three years ago, complications began immediately. Owen was born six weeks early and with two rare chromosomal abnormalities, one of which is Cri-du-chat syndrome, also known as “cat’s cry” syndrome. Before Owen was allowed to go home, he spent more than 100 days in the neonatal intensive care unit, OPB reports.
Owen left the hospital still connected to monitors and a feeding tube, and in need of care 24/7. He faces a lifetime of physical and cognitive limitations which require intensive therapies and care. Owen may never be able to walk or talk.
In 2018, Topping-Schuetz had her son evaluated by Washington’s Developmental Disabilities Administration (DDA). DDA concluded that Owen has such acute needs that he would qualify for institutional-level care. But with the family keen on continuing to care for Owen at home, DDA’s determination meant that they should be eligible for, among other things, in-home nursing care, respite care, and specialized medical equipment.
Despite the fact that Owen qualified for these services, the family soon learned that they would not actually be able to receive them. The Medicaid waiver program they were applying to, Basic Plus, was capped and there were no paid services available.
“I had no idea that you could have a child that was so significantly disabled with a black-and-white diagnosis and for the state to not do more to provide support,” said Topping-Schuetz.
Owen’s family is far from alone facing the issue in Washington. The state has more than 13,000 individuals with developmental disabilities , roughly half of whom are children, on its “No Paid Services Caseload” list. The individuals on the list meet DDA’s criteria for state sponsored services, but have not received them.
“We have a certain number of waivers that are funded and that’s what we have to stay within,” said Evelyn Perez, the assistant secretary who oversees the DDA at the Washington Department of Social and Health Services.
Perez says the state does not “even come close” to having enough waivers to help the number of individuals in need. He recently told a panel of Washington lawmakers that the demand for such services is increasing by more than 10% a year. The state has been struggling to have enough funding to provide support for individuals in need for the last two decades. The 2019 report, “The Case for Inclusion,” ranked Washington 30th in the nation for developmental disability services.
Topping-Schuetz says that her family is lucky, but still admits that Owen’s high level of need for care can be difficult. After Owen’s birth, Topping-Schuetz quit her job to be able to provide his care. The family has good health insurance through her husband’s job for the city of Tacoma. Still, the expenses can be daunting.
“It’s exhausting. I’m tired. It’s a 24/7 gig,” Topping-Schuetz said. …
“We didn’t want or expect that the state would just take care of us, but we had hoped that they would support us to provide a better and best life for Owen, so I go between mad and sad and scared,” Topping-Schuetz said.
It is unclear how long the family will have to wait to be able to access services from DDA, but they do not expect it to be anytime soon. In the meantime, Owen is about to start developmental preschool. He will go to classes for a few hours, four times a week. It will be Topping-Schuetz’s first regular break since taking her son home from the neonatal unit nearly three years ago.