For disabled people like Kayla Whaley, life is about a series of logistics, where a matter like getting out of bed in the morning involves the use of a sling lift and the help of an aide. She and many other members of the disability community rely on a variety of services to help them stay in their homes or community-based settings: the preferred setting for many disabled people, as well as the ostensible goal of state-based services.
Thanks to legal precedent in the form of cases like Olmstead vs. L.C., the state has a legal obligation to keep disabled people in their communities rather than isolating them in long-term care facilities.
Obtaining those services can sometimes be a challenge, as it requires working with a physician and care team to attest to the need for them, determining how many hours of care each day are required and outlining the specific tasks people need help with. As needs evolve, a care plan can also change. Many disabled people develop long-term relationships with their caregivers, relying on them to be familiar and stable figures in their lives who help them live independently in their homes and communities. Unfortunately, those relationships are often at the whim of the state.
Kansas Transfers All Services to Managed Care
In Kansas, the state is about to embark on a major experiment that could have significant implications for the disability community. The state’s Republican governor, Sam Brownback, has decided to transfer all such services to managed care, working with three firms to provide services across the state of Kansas through Medicaid, rather than relying on community organizations, local care groups and individual county services. While a few states, including Vermont, have done so on a small scale, Kansas is the first state to put its entire developmentally disabled population into managed care.
The governor claims the move will generate substantial savings for the state by centralizing costs and streamlining the provision of services. Residents and disability advocates have concerns. This will mark the first time a state has attempted to simultaneously transition an entire service population to a different system, which is a very sudden move that requires substantial coordination.
Advocates are also worried that managed care companies may focus on profits to the exclusion of care, creating a situation where people may be separated from caregivers or denied needed services — and when you rely on these services to stay alive and comfortable, denials can be a serious problem.
For adults with severe developmental disabilities who need aides at all times in order to remain independent, this could have serious outcomes. Parents of such adults may not be ready, willing or able to take on caregiving roles, preferring to encourage their children to live independently so they can enjoy more fulfilling lives. If KanCare fails them, they could be left alone without care for hours, a potentially dangerous situation, and they might ultimately be forced into institutions against their will, with no care alternatives available.
Can KanCare Truly Provide?
Critics of KanCare are also worried that the service may not provide the level of intimacy expected and required of caregivers. Personal care can involve very intimate tasks as well as an intense relationship, one that requires trust and patience on both sides. Employees of managed care companies that aren’t familiar with the specific care needs of developmentally disabled people, including both children and adults, may not be in the best position to provide that care — and the companies involved in KanCare freely admit that this is the case with them.
UnitedHealthcare Community Plan, Amerigroup and Sunflower State Health Plan (a subsidiary of Centene) are responsible for providing services under KanCare. They’ll be exclusively responsible for the state’s developmentally disabled population, throwing them into unfamiliar waters even as clients will be expected to adapt to possible changes in care providers, services offered and routines. The mix could provide explosive for Kansas, and it raises an important question: how much do you trust managed care companies? Would you be willing to put a developmentally disabled child into the hands of managed care? Some developmentally disabled adults, critics and advocates certainly wouldn’t.
Privatization vs Human Beings
This situation highlights the growing turn towards managed care services to save money, with privatization hitting schools, prisons and other public institutions in the United States. Numerous instances of abuse in all these systems suggest that managed care is not the answer, whether we’re discussing prisoners denied health care by private prison corporations or students packed into overfilled classrooms.
The persistent trend towards privatization targets the most vulnerable members of society, those who have no choice or alternatives; low income students in privatized schools cannot afford to transition to private schools, for example, where they might benefit from individualized instruction, smaller class sizes, more comprehensive disability services and other benefits. Likewise, low-income disabled people cannot afford to contract their caregivers directly or pay for their own care through a holistic system that respects them as individuals rather than treating them as cogs in a larger government framework. Prisoners, of course, have no choice when it comes to where they serve, even if they have documented medical or social needs that suggest a given facility may not be safe for them.
The uproar over KanCare illustrates that the fight over managed care and privatization in the United States may be ramping up, especially in cases where it involves children and people with severe impairments, both of whom rely on caregivers to establish communication and keep them safe. Large, centrally administered systems provide few options for people who need to be treated with patience and care, as for example in the case of disabled people who rely on communication boards to reach out to people around them.
As worries mount about the impending January 1 deadline for the transition to KanCare, so does a growing awareness of the class gaps in society; the United States is becoming a nation where being poor can literally become a death sentence, as people cannot afford to access the same services, rights and benefits as wealthier members of society.
This makes the United States stand out among other industrialized nations, which have a much more comprehensive social safety net, one that includes a variety of care options for people who need them as well as more comprehensive and holistic education, prison systems and other public institutions. Can the United States institute reforms to change the way it thinks about public services and welfare?
Photo credit: Pixtionary.