Robbie Kramer was mourning the loss of her 27-year-old son as she stepped to a microphone at the Capitol to speak from the heart to a Kansas Legislature oversight committee about the potency and cruelty of the state's services for people with disabilities.
"I ask for a little patience today as just this week my husband and I are mourning the loss of our son," she said.
She said Keith contracted a disease with no known treatment that required 24-hour, seven-day-a-week medical care from the time he was an infant through his life as an adult. He used a ventilator to help breathe and a gastronomy tube to be fed. His state support plan of specialized care, designed to allow him to live at home, called for a skilled nurse to be present 20 hours each day. It was a godsend when it worked, she said. When it didn't, she said, the Kramer family had no option but to fill gaps.
A conversation she had about inconsistent nursing assistance triggered a formal grievance with the Kansas Department for Aging and Disability Services. The nursing provider retaliated, Kramer said, and the insurance company earning about $1 billion annually in Kansas to administer Medicaid under the system named KanCare gave notice it would begin enforcing a policy limiting nursing aid to 12 hours a day. The family's appeal prevented immediate implementation of the 40% reduction in aid.
"This system can be very cruel to parents and people with disabilities. The programs are a lifesaver when they work," she said. "While Keith is now gone, I hope by sharing our experiences with the 'system' might help make things better for other families to not be isolated."
The Legislature's bipartisan oversight committee of House and Senate members recently gathered reams of testimony from individuals and organizations with ideas for improving a Medicaid system serving more than 360,000 disabled, elderly and poor Kansans.
KanCare is a $3 billion program financed primarily by the federal government with state support. There is an ongoing political battle in Kansas about broadening eligibility for Medicaid to 130,000 to 150,000 lower-income adults and children.
Gardner resident Joan Kelley shares guardianship of a 29-year-old profoundly disabled, nonverbal grandson who functions cognitively at the 3-year-old level and exhibits unpredictable, dangerous behaviors. She challenged pressure by advocacy organizations and state officials to direct high-risk disabled people into community- or home-based facilities as opposed to facilities such as the Kansas Neurological Institute in Topeka.
She said KDADS was required by law to provide assurance to federal Centers for Medicare and Medicaid Services that both community-based and the intermediate care facilities, including KNI, were offered as options to disabled individuals in Kansas.
"In reality," Kelley said, "this is not occurring and cannot be implemented under current Kansas ICF gatekeeping policies, which forbid access to the ICF option of care" until families of a person with disabilities exhaust all community options. "Many Kansas families are exhausted, struggling to provide 24-7 care to the most complex individuals."
Kelly said time had come for the Legislature to determine whether KDADS was offering true choice to the state's most vulnerable citizens.
During the oversight committee's public hearing, Overland Park case manager Laura Singer sought relief for one of her clients, a man in his 30s with intellectual and developmental disabilities, or I/DD. She said the plight of the man, who she identified as Carl, stood as evidence of "our failing mental health system in the state of Kansas."
"Carl suffers from addiction to alcohol and drugs as well as being diagnosed with schizoaffected disorder," Singer said. "When taking his medications, not using substances, he is an easy-going person who loves doing physical labor."
She said Carl checked into a Johnson County detoxification program and a rehabilitation program, but was unable to complete the regimen due to multiple outbursts viewed as disruptive to others seeking help. He was twice admitted to Osawatomie State Hospital, but released both times within hours. He's on a six-month waiting list for admission to Larned State Hospital.
"Carl is currently incarcerated at Johnson County adult detention center," she said. "At his last hearing, Carl was incoherent, struggling with delusions."
His dual diagnoses and substance abuse make it impossible to place him in treatment centers, she said. She urged legislators to invest in alternative treatment facilities capable of handling people such as Carl.
"Carl is just one example of hundreds of I/DD individuals who are exploited and introduced to drugs by a population of pushers," she said.