The following reflection is part of FPI’s new “In Our Words” series, the goal of which is to make space for those stories and experiences that help shape people’s outlooks on policy and government.
Most people will say that they would like to “age in place,” a euphemism for “don’t put me in a nursing home.” But if you ask those same people how that should be accomplished, you are not likely to hear many concrete ideas. Options to nursing home care are not well understood. As an attorney, I have spent over a decade trying to help people who are disabled or elderly get the care they need to stay at home and out of institutions. I’ve lost track of the number of times that a caregiver or healthcare provider has assumed that a client cannot receive the care that they need in the home because they now qualify for nursing home care.
Few clients or their caregivers understand what services are offered, how those services are differentiated from each other, or how an “array” of services is approved to meet overall care needs. Most of my clients did not receive a copy of their own care plan.
In Florida, a Medicaid program known informally as the “Long-Term Care Waiver” (“LTC Waiver”) enrolls 76,469 people, all of whom would otherwise meet the level of care required for nursing home admission. This program is intended as an alternative to institutional care, not a lower-level support system that is a precursor to institutional care. Unfortunately, it has been my experience that this has not been the working philosophy for Florida’s program.
The LTC Waiver is an amalgam of smaller Medicaid Waiver programs that the Florida Legislature grouped together to be administered through “managed care.” Under this model, insurance plans contract with the state to act as the gatekeepers for long-term care services needed to keep enrollees safely in their homes or communities. In return, plans are paid a set amount for each enrollee that is combined to fund all plan enrollees. Each enrollee gets a case manager, employed by the plan, who is responsible for explaining the services offered, helping the enrollee come up with an array of services needed to “avoid institutionalization,” and fielding requests for additional services or problems with providers.
One of my clients who is severely disabled and living on his own was getting 24 hours per day care from one Medicaid long-term care program, only to have his services cut to 28 hours per week by another program using the same “medical necessity” criteria.
Access to the LTC Waiver, which has a long waiting list, is a serious issue. However, I would like to focus on the problems I have encountered with clients who are already enrolled in the LTC Waiver. Examples range from infuriating to heartbreaking:
- Most plans do not give clients or caregivers information on how to submit a written request for services, so the client must rely on their case manager to submit verbal requests. Numerous clients or their legal representatives have told me that they have repeatedly asked their case managers for more help, with no response. Others had requests submitted but for the wrong service or too few hours, causing months of delays. Some were told that the LTC Waiver has a limit on service hours, which is not true. The only limit for a covered service is whether it is medically necessary.
- Plans rely heavily on voluntary caregivers or “natural supports,” even where there is no justification, or the caregiver is pushed beyond safe limits. One client who had to be on a ventilator every afternoon was denied services because prior to enrollment in the LTC Waiver, a neighbor had been coming over to help. The plan never contacted the neighbor to see if she would continue to assist; in fact, the neighbor had left to stay with her children in another state. In another case, a daughter who was not a nurse was forced to act as nursing backup for her father’s care and was repeatedly put in the position of providing almost 60 straight hours of care when staff did not show up. Another caregiver had to stop working full time when the plan failed to authorize sufficient hours, putting her family at financial risk. Her requests for more hours were ignored, even though program rules require plans to consider caregiver availability and work schedules. In a particularly egregious case, an elderly wife who had been injured providing physical care for her disabled spouse could not get more hours to cover the surgery she needed to repair the injury.
- Few clients or their caregivers understand what services are offered, how those services are differentiated from each other, or how an “array” of services is approved to meet overall care needs. Most of my clients did not receive a copy of their own care plan.
- Decisions are being made for seemingly arbitrary reasons. One of my clients who is severely disabled and living on his own was getting 24 hours per day care from one Medicaid long-term care program, only to have his services cut to 28 hours per week by another program using the same “medical necessity” criteria.
- Clients who have managed to get written responses to their requests for care may still be left in the dark. Plans are required by federal law to provide individualized reasons for a denial; however, some plans use the same stock rationale for each notice, which boils down to a statement that the plan only needs to give services that are needed. This lack of detail makes it almost impossible to mount a challenge to the denial.
The failure to understand how to navigate this complicated program is a problem that only benefits the plans. If you don’t know what to ask for or how to ask, you won’t be getting services, which neither the plan nor the state will have to pay for. The bottom line is that the LTC Waiver’s current operation does not provide the consistency in case management or service authorization that is needed to truly act as an alternative to nursing home care. There is too much reliance on caregivers who are unskilled or overburdened, too little transparency or advocacy, and an underlying failure to acknowledge the goal of the program as set out in its own rules: “to provide an array of home and community-based services that enable enrollees to live in the community and to avoid institutionalization.” Until this changes, many people will find that aging in place using the LTC Waiver is not a sufficiently reliable option.
Nancy Wright is a sole practitioner in Gainesville, Florida, focusing primarily on Medicaid home and community-based services for the elderly and adults and children with disabilities. Her legal advocacy has included successful administrative hearings, rule challenges, state court appeals and federal lawsuits under both the Medicaid Act and the Americans with Disabilities Act.