IDD providers in Kansas finally secured a funding boost. They say more work is needed.
Shawn Voss is a creature of habit.
Routine is not the only thing Voss loves — he also enjoys Disney movies, 1980s music and even the most dreaded household chore: doing laundry.
But the 27-year-old has autism and can become agitated when even little details — like the location of medicine in a cabinet — is out of place.
"Shawn is very observant. And if you don't do stuff, in the right routine, he's smart enough to know that," said Diane Voss, his mother. "He's going to call you on it."
Ever since he moved out of the family's Stockton residence, the elder Voss said they have missed his "bubbly personality."
Still, the family had a difficult time retaining staff to help provide in-home support, which is in part why they jumped at the offer for Voss to move to Hays, where he lives independently in a home run by Disability Service of Northwest Kansas, albeit with consistent monitoring.
The primary funding stream for DSNWK is a program that is little known to the general public but a vital lifeline for providers who care for those with intellectual and developmental disabilities.
In 2018, the state passed a funding boost for the state's share of a Medicaid waiver program. The program is aimed at providing services for those with intellectual and developmental disabilities and who wish to live in their home, rather than an institutional setting.
But providers previously went nine years without a funding increase. This means pay for staff has remained largely frozen — despite the mentally and physically taxing work. Workers can often find a more lucrative job at a fast food outlet or big box retailer.
That leads to a constant turnover of staff who work alongside Voss in Hays — his mother said they have worked with four managers at the facility in the past two years.
Often when the family goes to pick Shawn up every two weeks, there is a slate of different staff members. Diane Voss said the turnover can make it hard on her son, for whom consistency is so important.
"It's like 'Who are you?' and 'What happened to such and such (person)?" she said. "Well, they quit because they got another job."
Funding increase finally secured
The good news is help is on the way — although it took a year longer to arrive than providers initially hoped.
After a sustained effort, legislators put a $9 million funding increase for the waiver program in the state budget last year. The plan looked to be sailing through and was signed into law by Gov. Laura Kelly.
But then COVID-19 hit and the state's fiscal future was thrust into chaos.
Kelly cut the funding boost as part of a $700 million plan to balance the state budget. She said the move wasn't intended to hamstring providers but rather to ensure the state could continue to fund core services in the future.
“It’s just not responsible to increase funding for a program when you’re going to have to be cutting everywhere else,” Kelly told Kansas News Service last year.
But it was still a disappointment to those who worked on securing the new dollars.
"It's just a minor setback, but it still hurt and it's got to be so frustrating for those folks out there that are competing for staff," said Rep. Will Carpenter, R-El Dorado.
The funding boost appears to have stuck in 2021. Kelly approved a roughly $36 million increase as part of the budget bill last week, allowing providers and activists across the state to let out a sigh of relief.
Matt Fletcher, director of the advocacy group Interhab, noted providers like DSNWK rely on the waiver for the bulk of their funding — unlike other health care providers who have a diverse stream of revenue sources.
Funding has inched upwards in the past two decades but at about half the rate of cost increases.
"Providers, they have to take whatever the state will give them," Fletcher said. "And they don't really have a capability to make up for underfunding through other means. So this system has been starved pretty significantly for a long period of time."
Low pay hurts attracting, retaining staff
For the staff involved in the most intense aspects of patient care, day-to-day duties can include helping individuals bathe, dress and use the bathroom.
Others provide needed support and can help de-escalate tense situations to keep the folks they care for safe.
"These workers are not babysitters or anything," Voss said. "They are workers that have to figure out how these people need to be handled. It is very important for a rate increase to keep quality help there. That is critical for these people's wellbeing."
But Interhab data shows the average pay for those workers is $10.49 an hour, which works out to about $22,000 a year. That is about $1,000 a year less than the average salary for food preparation workers in Kansas, according to the Bureau of Labor Statistics.
Big Lakes Development Center in Manhattan saw its turnover rate drop by half during 2020 after it was able to funnel federal Payroll Protection Program dollars into a temporary raise for staff.
But Lori Feldkamp, the center's president and CEO, said the pay hike couldn't be sustained once the aid program ran out.
Currently, Big Lakes has 43 full-time openings sitting vacant, meaning remaining staffers have to work six or seven days a week.
"What that means is that people are getting burnt out," Feldkamp said. "They can only handle working 60-, 70-, 80-hour weeks for so long. It's very stressful for staff."
About 80% of the funding increase will go into staff salaries, Carpenter said — by far the No. 1 cost for providers.
For staff at Big Lakes, that will mean a $1-per-hour increase. Feldkamp said that should help get more staff in the door and sticking around longer, although she notes the reimbursement rate still needs further adjustment to account for years of underfunding.
"The kind of person that does well here, if we can keep them for a year, usually we got them," she said. "Because they really believe in what we do and they believe in taking care of the clients and forming those relationships."
'We just have been guessing'
The IDD community isn't resting on its laurels, however.
As funding has remained stagnate, the number of individuals who have applied for a waiver has grown, prompting a lengthy waiting list to form. It can take upward of a decade for someone to get off the list and access services.
And the exact number of individuals waiting, however, is unclear. Fletcher pegged the backlog at more than 4,000 residents, but those figures were just an estimate, he said.
"We have no idea, truthfully, about how many people are truly in need of services," Carpenter said.
Some Kansans may have put their loved one on the list when they were young, anticipating future services that might be needed in the future. Others added to the list as children may now be grown adults, necessitating different support.
But even if the state was able to pony up the massive sum of money needed to wipe out the waiting list in one fell swoop, there aren't enough providers to cope with an onslaught of thousands of new individuals requiring services.
"It's long past time that the state had a strategy for how to address and eventually eliminate this list," Fletcher said.
Providers are feeling strained for a variety of reason, he said — including struggles in finding a qualified workforce.
But other challenges exist as well. Those with intellectual and developmental disabilities are living longer, creating a more complex set of needs that providers have to adapt to serve.
Legislators are starting to lay the building blocks for tackling the problem, Carpenter said.
That will likely include forming a panel of members tasked with reviewing the issue and hearing from stakeholders over the summer and fall months, when the Legislature does not normally meet.
The goal will be fact finding and charting a sustainable course forward.
"We just have been guessing," Carpenter said.
'Somewhere ... we lost our way'
The debate over the future of services for the those with intellectual and developmental disabilities has a special resonance in Kansas.
Fletcher noted the state was ahead of most of their peers in moving individuals with IDDs out of state-run institutions and into settings which allowed them to remain in their communities and, in many cases, in their own homes.
The push sparked an interest in programs like the waiver system as early as the 1980s and the 1990s, driving a major decline in the census numbers at state hospitals.
Meanwhile states like Pennsylvania are still in the thick of debating the merits of de-institutionalization to this day.
"We as a state, were in agreement that the community was where we wanted persons with intellectual and developmental disabilities to live," Fletcher said. "We valued that. And then somewhere in the late 90s, early 2000s, we lost our way."
The paradigm shift means individuals like Shawn Voss are able to remain closer to home.
Voss returns to Rooks County several times a month to see his family. While in Hays, he enjoys trips to a local bowling alley and work at an area laundry service, things which would have been unimaginable prior to de-institutionalization.
Keeping that model alive and well is important, advocates say.
"We have to sustain this community services (model) for more people," Feldkamp said. "So that they can stay home, and they can stay in their home communities and participate in the life of their family and be a valuable member of the community."
The story has been updated to accurately reflect the acronym for Disability Services of Northwest Kansas as DSNWK.