New Trend in Medicaid HMO Policy on Respite Care: What You Should Know

by Marybeth Putnick
Disabilities Law Program, Community Legal Aid Society, Inc.

Carla Washington is a twenty-seven-year-old woman with cerebral palsy. She is dependent on caregivers for all activities of daily living. Currently, she is at risk for institutionalization because her Medicaid HMO has terminated her home health services for all evening and weekend hours. Her mother is a single parent who is finding it impossible to both manage the home and care for her child without help. Carla's mother now has to make private arrangements with untrained caregivers just to shop for groceries or stop at the pharmacy on weekends. Like many parents, she finds that friends and neighbors consider caring for Carla too difficult because of her medical needs, so finding substitute care is difficult. Carla cannot go to day programs for people with disabilities because her wheelchair is damaged, and she is unable to sit in it for long bus rides. Despite many requests, her Medicaid MCO has failed to repair or replace it. Her mother is reluctant to place Carla in a residential facility, but with no home health services to provide help during evenings and weekends, she may soon be forced to do so.

The Washingtons are not alone in this situation. Medicaid MCOs continue to cover home health services for individuals for whom babysitters or day care would be inappropriate while caregivers are at work, but they are routinely terminating home health hours formerly provided on evenings and weekends. This shift in policy makes it much more difficult for caregivers to carry out the business of running a home and caring for a family. The MCOs generally justify these terminations by reference to "medical necessity" and "respite" policies. However, close examination reveals that the Medicaid policies do not warrant these terminations.

At least one MCO has tried to justify providing home health services only for work hours by saying that additional hours are not considered a "medical necessity" under the State Medicaid policy. In making this analysis, the MCO relies upon the criterion that proscribes coverage for services that are "solely for the convenience of the beneficiary, the beneficiary's family, or the beneficiary's provider." The MCO will concede that home health services are medically necessary when the caregivers are at work, because of the medical complexity of the dependent, yet argue that home health services used so the caregivers can go grocery shopping and take care of other family business are solely for the convenience of the family. Logically, if home health services are medically necessary when the caregivers are at work, they are medically necessary whenever the caregivers must be meeting other responsibilities rather than providing direct care. Therefore, if they provide home health services during the caregiver's work hours, the Medicaid MCOs should not rely upon the medical necessity policy for the termination of additional hours of home health.

Instead, the MCOs should only consider whether those additional hours are respite. Because respite is not a covered benefit, knowing how Medicaid MCOs define respite care is crucial. Delaware's Medicaid Program Policy Manual defines respite as "care given in order to provide intervals of rest and relief to caregivers." At least one MCO has added language that substantially changes this definition. Its own policy reads: "respite care" is "care given in order to provide rest and relief from the daily care of the disabled/medically complex person, for the primary caregivers." Under the MCO definition, even going to work for wages would fall under the term "respite," because the caregiver has a period of rest and relief from caring for the disabled person while at work or "on the job." The MCO, at this time, simply carves out an exception for work for wages. By adding the phrase "from the daily care of the disabled/ medically complex person" to the Medicaid definition, the MCO created a definition that is inconsistent with the Medicaid definition. This MCO definition substantially impairs the ability of those caring for individuals with disabilities to carry out the necessary work of maintaining a home and a family.

To remove any ambiguity in the above definition, the MCO also added language to its respite policy that explicitly states that home health aides and private duty nursing services "are appropriate [only] when the primary caregiver is working and the child is unacceptable for day care/baby-sitter due to extensive medical needs." In doing so, the MCO developed a categorical policy that allows it to terminate any non-employment hours of home health services without an individual determination of whether they are "respite" hours. By relying on this policy, the MCO can avoid considering how the additional hours are being used, how many caregivers live with the beneficiary, how many children are in the home, whether a caregiver is herself or himself disabled, etc. However, such a categorical MCO policy is contrary to state Medicaid policy. Throughout the state policy, it is clear that Medicaid policy makers expected Medicaid MCOs to consider individual circumstances before making termination decisions. Categorical policies and decisions are inappropriate in the Medicaid context.

In the past, Medicaid routinely approved a few hours of home health services in the evenings and/or on weekends so that disabled individuals could receive proper care while their caregivers carried out other household responsibilities-such as cooking, shopping, running errands, doing laundry and caring for other family members. At least one Medicaid MCO now categorically considers such coverage respite, and therefore has terminated benefits for those hours without an individual determination of necessity. By calling coverage for such activities respite, MCOs stretch the meaning of "rest and relief" beyond its logical extension. Surely Medicaid did not anticipate that the MCOs would consider conducting the normal and necessary activities of daily life to be "an interval of rest and relief." Many individuals with disabilities will be disadvantaged, and perhaps even endangered, by this trend in policy interpretation.