Over the last decade the state has intensified efforts to move people out of the two state institutions for Kansans with developmental disabilities — the Kansas Neurological Institute in Topeka and the Parsons State Hospital and Training Center — and into home and community-based settings.
Those efforts track back to previous administrations and are in line with federal Medicaid guidelines that instruct states to provide support services for people with developmental disabilities in the “least restrictive” setting.
Disability advocates generally laud that change, also known as deinstitutionalization. But officials with the state’s Community Developmental Disability Organizations, or CDDOs, say they’re struggling to recruit and retain enough caregivers to make that change safely.
Tim Wood, executive director of Topeka-based Interhab, said “a decent sample” of the state’s 27 CDDOs recently met in Manhattan for a retreat.
Wood, whose organization advocates for the CDDOs, asked those in the audience at one point how many more Kansans they could serve.
“Everybody in the room was either at capacity or near capacity,” Wood said.
That capacity problem is gaining new urgency with the state’s recent decision to close one residential unit at Parsons and transfer 22 of the hospital’s 165 residents into home and community-based services.
CDDOs serve as gatekeepers to those services by assessing what supports a person’s disability requires and connecting the person with local service providers. The people leaving Parsons and their families are seeking CDDOs who can set them up with appropriate services before their Sept. 1 departure date.
About half the families affected are seeking services through CLASS, a CDDO that serves southeast Kansas.
Employees there say the people leaving Parsons will need fairly intensive support — most of them 24 hours a day — and they’re working on a tight timeline to arrange it.
Wood said making sure people have enough services lined up before they leave the hospital is critical. Studies have shown the first 90 days of such transitions are risky.
“People can die,” Wood said.
Capacity problems widespread
CLASS leaders say their capacity to serve more people was dwindling even before the Parsons transfers.
Leaders of other CDDOs share similar stories.
Lori Feldkamp, president of the Big Lakes Developmental Center, said some Parsons families have looked into getting services from her organization, which serves a four-county area around Manhattan.
“We’ve had some initial inquiries, but at this time we are at not taking on any new clients,” she said.
Feldkamp said her organization had to freeze new admissions in May because of an inability to find sufficient staff. Big Lakes has about 240 full- and part-time staff members who serve 200 people.
Unemployment rates in the Manhattan area are at historic lows, she said, and the pay rates the state has set are not competitive for hiring caregivers.
Colin McKenney, executive director of a service provider in Wichita called Starkey Inc., said the freeze at Big Lakes may be a sign of things to come.
“I think more providers, more CDDOs are going to be looking at that,” he said.
McKenney said Starkey may take on one of the people leaving Parsons — a Kansan with a developmental disability who has lived at the facility for 40 years. But it’s a challenge.
“After that many years, creating that type of change in a short period of time causes me pause,” he said.
Starkey serves about 500 Kansans with disabilities in Sedgwick County, and McKenney said the organization consistently has about 40 to 50 vacant jobs in residential, direct care and community living services.
“We are really challenged finding the qualified staff to fill those needs,” McKenney said. “Not everybody has the heart to do this type of work.”
He said providers are competing against private sector employers and the state hospitals themselves to fill caregiving positions.
Tim Keck, secretary of the Kansas Department for Aging and Disability Services, successfully pushed this session for pay raises at the state’s mental health hospitals, which also are short-staffed.
“Obviously we pointed out to him that we’re having a lot of similar concerns,” McKenney said. “We’re having difficulties compensating people to the level that convinces them to give this work a try and stick with it.”
Operational costs keep rising, McKenney said, and the statewide pay rates haven’t gone up in nine years.
Pay study inconclusive
The state reimburses providers for home and community-based services based on a five-tier system. Tier 1 Kansans have the most severe disabilities and need the most support while Tier 5 Kansans need the least support.
The reimbursements also are divided into residential service rates, for Kansans with disabilities who live in a setting other than their family home, and day service rates, for Kansans who live in their family home.
The residential rates range from $44.27 per day for Tier 5 to $160.21 per day for Tier 1.
Day services, which include workplace training, socialization and recreation, are reimbursed at much lower levels: $1.87 a day for Tier 5 up to $4.98 per day for Tier 1. Slightly higher “super tier” rates can be applied on a case-by-case basis.
“We are really challenged finding the qualified staff to fill those needs. Not everybody has the heart to do this type of work.”- Colin McKenney, executive director of Starkey Inc. in Wichita
This year the state commissioned a pay study of the home and community-based services system — the first since 1991 — to determine if the rates were sufficient to allow service providers to compensate staff competitively.
The accounting firm of Myers and Stauffer conducted the study, which was published in April.
The authors said the research was inconclusive and recommended further analysis.
But in the “recommendations” section, they said the rates would have to be increased by 50 percent to competitively pay supportive home care and personal assistant services employees — direct care workers who provide most CDDO services.
Wood said the actual percentage is probably much higher.
Myers and Stauffer used federal data to peg a competitive wage for those positions at $11.27 an hour, or about $23,500 per year for a full-time worker.
Wood said even if the state raised rates to provide those kinds of salaries, it still wouldn’t match starting pay for similar positions at state hospitals.
“The rates have got to be addressed,” Wood said.
But he said the state’s ongoing budget problems make any increase unlikely in the foreseeable future.
Chad VonAhnen, executive director of Johnson County Developmental Supports, said the 83 providers in the county's network struggle to keep salaries up with the cost of living in the state’s most prosperous county.
But he said the reimbursement rates are so outdated now that it’s a problem in every county. And that could hamper current and future efforts to get Kansans with disabilities out of institutions and into community life.
“What I’m hearing statewide, with where we’re heading in terms of more limited capacity within state hospitals and moving people to home and community-based services,” VonAhnen said, “there is a growing concern not just for the Parsons transition, but just in general about how we’re going to be able to build community capacity down the road.”