By Dave Ranney
As a child, David Beecham’s disabilities were so severe his family couldn’t care for him.
“When he was born, he didn’t have any muscles in his face, so the doctors had to make him face,” said Linda Lock, executive director at Brown County Developmental Services in Hiawatha.
“His family kept him as long as they could, but his mom died, his dad remarried, and with five kids they felt like they couldn’t keep him.”
Beecham, now 67, spent much of his childhood and early adult years living in nursing homes.
“Keep in mind this was back in the 1950s, the 1960s, and the early 1970s,” Lock said. Beecham’s circumstances changed about 30 years ago when BCDS started a community-based residential program for adults with developmental disabilities who were either living with family members or in institutions.
Today, Beecham lives in a supervised apartment in Hiawatha. He uses his Social Security check to pay his rent. The services that allow him to live semi-independently are financed through the state’s Medicaid program.
Beecham, who is non-verbal, goes to BCDS for day services, and has an “in-community job” shredding paper at the special education co-op.
“He’s where he belongs,” Lock said. “He’s part of the community.”
Lock brought Beecham and seven other BCDS clients to a Thursday morning rally outside the Statehouse.
“We’re here to protect the HCBS waiver,” she said, referring to funding attached to the Medicaid program’s home and community based services waiver.
“That’s 78 percent of our budget, so if gets cut, it would affect us enormously.” Lock said all but a handful of BCDS’s 42 clients are living in apartments similar to Beecham’s; half have supported-employment jobs in the community. “We’d have more people here, but it’s hard for them to miss work,” she said. “And they don’t want to miss work.”
Legislators, as yet, have not proposed using cuts in HCBS spending to fill a projected $422 million gap between anticipated spending and projected revenue in fiscal year that begins July 1. But that doesn’t mean they won’t, said Marilyn Bittenbender, whose 40-year-old daughter has a developmental disability and lives in a supervised apartment in Lawrence.
“We know legislators are looking for revenue,” Bittenbender said. “So we’re here to let them know that the vast majority of people on Medicaid are elderly, children, or people with disabilities, like my daughter. This is a very fragile population that would be very much affected by any cuts in Medicaid.”
Earlier this year, Gov. Sam Brownback proposed – and legislators, thus far, have agreed – to spend almost $368 million on home and community-based services for about 6,000 people with developmental disabilities in fiscal years 2016 and 2017.
That’s about $6 million more than lawmakers expect to spend in the current fiscal year. “What we’re being told is that this $6 million will move about 200 people off the waiting list,” said Tom Laing, executive director at Interhab, an association that represents most of the state’s community-based programs for people with developmental disabilities. “That’s good, that’s great,” Laing said.
“But at the same time, we’ve still got 3,000 people on the waiting list and, each year, 200 people go on the waiting list. So it’s good, but it’s not really progress.” Interhab organized the rally, which drew more than 700 people from across the state. Though the budget bill that’s passed the Senate is often characterized as “break even” for HCBS services, it’s actually a cut, Laing said.
“It’s a cut by attrition,” he said. “If what’s been proposed is adopted, it’ll ensure our 10th and 11th year of no rate adjustment. So when the costs of hiring employees goes up and the level of funding stays where it is, we lose ground.”
Laing and others also spoke against a proposed reduction in support for the 27 community developmental disability organizations that help consumers find the services they need and make sure the services they receive are provided and are of high-quality.
A recent change in federal policies resulted in an 11 percent cut in CDDO funding, after which the Kansas Department for Aging and Disability Services proposed an additional 8 percent reduction.
“The CDDOs are the eyes and ears of the state when it comes to making sure that that the for-profit managed care companies that run KanCare are doing what they’re supposed to be doing,” Laing said. “So less money for the CDDOs means less oversight of KanCare.”
Kansas’ Medicaid programs, privatized since 2013, are called KanCare. “I came here to speak up for people who, it seems, have become invisible Kansans,” said Bart Bertzen, a retired data processer from Bonner Springs whose brother lives in a group home in Hill City after lengthy stays in the state-run hospitals in Larned, Winfield, and Norton.
“And my message is that we need to find the revenues to make this the state that people want to live in, to raise their families in, to educate their children in, and to run their businesses in – a state that meets people’s social-service needs,” Bertzen said. “There was a time, 20 years ago, when Kansas was a social-service model for the rest of the country. We need to get back to that.”
Dave Ranney is a reporter for Heartland Health Monitor, a news collaboration focusing on health issues and their impact in Missouri and Kansas.