When state and federal officials learn what Jim Johnson thinks of proposed funding changes, they will have no doubt about his position.
As executive director of Sunflower Diversified Services, Johnson said there would be “dreadful” costs to the non-profit agency’s clients.
Sunflower serves infants, toddlers and adults with developmental disabilities and delays in central Kansas.
“The proposed changes in how adult residential services are funded is not meant to enhance independent living as required by law,” Johnson said. “Instead, it reflects state action to fill a major budget gap of its own making.
“A change of this magnitude will adversely affect the people we serve,” he continued. “Sunflower may find a way to survive this, but it will come at a dreadful cost to people. Tragically, many Sunflower clients will lose the independence they have fought so hard to achieve.”
The residential-supports issue is so important to Sunflower because the agency operates under a self-imposed higher standard for community-based living, Johnson noted.
For example, the agency currently serves 62 people in 46 locations in Barton, Pawnee, Rice, Rush and Stafford counties. It maintains only two group homes for those who choose that type of setting.
The other locations include houses, duplexes and apartments not owned by the agency.
“A vast majority of people choose to live alone or with one roommate,” Johnson said. “They pay rent to local landlords and enjoy living as independently as possible. It is their absolute right to do this.
“The proposed funding change is not designed to enhance their legal right to seek independence,” Johnson said. “Rather, it will jeopardize the ability of people to maintain their current lifestyles.
“Overall, it appears to be a one-sided plan that only serves to meet the state’s need to cut costs,” he continued. “But it ignores what individuals need to successfully live independent lifestyles to which everyone agrees they are entitled.”
Johnson has outlined his views in a letter to the Kansas Department for Aging and Disability Services, in response to its request. The document also has been sent to the Centers for Medicare and Medicaid Services (CMS), the federal Medicaid office.
In addition, he is attending a meeting at Salina with CMS officials and will hand deliver his information there, as well as in Topeka.
The purpose of Home and Community Based Supports (HCBS) is to promote each person’s right to live in the least restrictive environment possible.
This is guaranteed by statute and required as part of Kansas’ provider-licensing standards. It includes rights to privacy and due process.
The proposed state policy change would shift funding for residential services from a daily rate to a face-to-face contact rate.
Since its inception, this “waiver” program has been designed to provide a managed care approach to services for people with disabilities.
“Every person eligible for HCBS residential services has specific identified needs that must be met by a trained professional,” Johnson said. “However, not everyone we serve needs someone in their home every single day.
“Instead, they are entitled to their privacy, with access to our on-call staff as needed,” he continued. “At the same time, we serve many individuals in their homes who cannot live successfully in a group home due to physical or behavioral issues. But, with full-time staff, they can live successfully in their own homes.”
This system, Johnson noted, is the desired outcome of both the Kansas Developmental Disabilities Reform Act and the HCBS Final Rule.
Through this direct-service system, the additional staff time and funding for those who need less support can be used to help people who need full-time staff, Johnson explained.
“Kansas leadership purports its commitment to the Final Rule but then proposes a policy that virtually insures we cannot meet that desired outcome,” he said. “While state leaders have publicly endorsed this action to pay only for what a person receives in face-to-face contact, they fail to address the other end of the spectrum – additional funding is needed to support those who require full-time support.”
In addition to direct-contact services, residential funding pays for medical services, legal advocacy, financial counseling, employee training, medication monitoring with oversight by Sunflower’s registered nurse, and protection from those who threaten to exploit people.
“There is no other way to pay for these critical services and people cannot live independently unless they have this support,” Johnson said.
The proposed policy makes allowances for additional services when a crisis occurs, Johnson said. But it assumes the crisis can be swiftly justified to those who approve or deny services.
“Sunflower’s goal is to prevent a crisis that can threaten a person’s independence long-term,” he emphasized. “We believe we have been highly successful in proving that people can live in places they choose and they control – regardless of the level of support they need.
“People with disabilities should not have to pay the price for the state’s fiscal issues. The people we serve have the legal right to the same dignity and respect as anyone else. The proposed change rewards individuals in group homes and other agencies that fail to assist them in understanding they have other options.”