At age 27, Nathan Riehn is worried that state budget cuts could cost him his job, or even his life.
Riehn, of El Dorado, has several developmental disability diagnoses. He lives in a state-supported group home and, also with state support, gets expensive medicines to control his behavior and seizures.
That has allowed him to hold a minimum-wage job as a custodian and maintenance man.
He also has severe, potentially deadly sleep apnea and must use a continuous positive airway pressure, or CPAP, machine every time he sleeps.
“If I don’t have the funding I need, I don’t have that CPAP machine,” he said.
Riehn was one of hundreds of developmentally disabled people and their supporters from across Kansas who converged on the state Capitol on Thursday to plead with lawmakers to hold the line on funding for the disabled.
The Capitol rally and personal lobbying day is an annual event, but this year’s was more somber and subdued than in years past.
The state is projected to spend $800 million more than it takes in during the next fiscal year, and lawmakers must eliminate the deficit before they can end their annual legislative session.
With much of the low-hanging budget fruit already picked – the governor has recommended fund transfers and other changes to cover about half the amount – the disabled and their advocates worry that they’re next in line for devastating cuts.
“When you keep hearing about what you’re going to lose and the big hole, it’s hard to stay positive,” said Kevin Fish, executive director of the disability services provider Arc of Sedgwick County.
The developmentally disabled “make a big target,” said Tom Laing, executive director of Interhab, an umbrella organization for people with developmental disabilities and the providers who take care of them.
Laing said the obvious problem is the deep tax cuts enacted by the Legislature and Gov. Sam Brownback since 2012.
In an effort to spur business and job creation, they eliminated state income taxes for more than 330,000 business owners and reduced individual income tax rates.
“It’s not that anyone wants to hurt them,” Laing said, looking at the hundreds gathered for the rally. “But they have less political power than the people who get benefited by tax cuts.”
Rocky Nichols, executive director of the Kansas Disability Rights Center, cautioned people to remain calm and friendly when contacting lawmakers.
Nichols, a former legislator, said it’s hard to get someone to shake your hand “when you go in with a doubled-up fist.”
Things were tight for the disabled even before the tax cuts and budget crisis, said Bill Craig, father of a 36-year-old disabled son, John, and a former executive of a Paola care facility.
He said the lack of adequate state funding for disability services has caused massive turnover of care workers and instability for clients.
“The rate of pay that supports the guys who take care of John has not been able to be increased in almost 10 years,” Craig said at the rally. “During that period of time, John has seen over 100 individuals walk through his life and then have to leave it because they can’t support their families.
“Every week, John meets a stranger who is taking care of the most intimate needs in his life, if you can imagine what that might be like.”
Meanwhile, he added: “The wealthiest folks in Kansas have prospered. Many of them have seen what little state taxes they pay have been eliminated, and the stock market is surging. So how does that picture fit with your lives? How does it fit with my son’s life?”
The developmentally disabled are “the most vulnerable population in Kansas,” said Aldona Carney, who spoke at the rally about her 20-year-old son Neil, who has severe autism.
Disabled people can receive services from their school district up to age 21, and many have to go on waiting lists for adult services when they reach that age.
Neil will age out of the school system next year, Carney said.
“To tell you the truth, I’m terrified,” she told the demonstrators. “His autism doesn’t go away because he graduates next year.
“We need to educate our governor and all the legislators about the services needed for our loved ones so they can live a life with dignity, because their lives matter, and all of your lives matter.”
Reach Dion Lefler at 316-268-6527 or firstname.lastname@example.org.