Don’t overlook ‘maintenance care’

There is a caregiving crisis in America. As our population ages, caring for the homebound elderly falls to relatives and close friends. Severely disabling conditions may require ongoing wound care; intravenous treatments; bathing and hygiene assistance; and physical, occupational and speech therapies. Increasingly, the cost of services out of pocket is prohibitive. Without skilled help at home, which costs from $25 to $60 per hour, the patient may deteriorate quickly, suffer sepsis or broken limbs, and wear out the bodies and minds of caregivers.

Residents in my condominium rarely speak to one another except in the elevator — but a few days ago, a neighbor came to my door, distraught. She knew I cared for a disabled spouse 24/7 and she was at a mental and physical tipping point. Her roommate fell and injured herself the previous year and a “series of errors” since had left her homebound, non-ambulatory, and in declining health. I offered my neighbor all I had learned about services after hitting the caregiving wall myself, but I knew it was piecemeal and inadequate.

The Legislature has discussed bills that provide $70 a day to working caregivers to offset the high cost of respite care. This is helpful, but not sufficient. Overburdened caregivers need more skilled help for as long as the patient survives.

After an acute hospital stay, a Medicare patient is eligible for home health care. Agencies provide “restorative” services, which cease when the patients no longer show improvement in their condition. However, certain patients are eligible for ongoing “maintenance” services that are not time-limited. A Medicare-funded maintenance program does exist — in theory. However, maintenance benefits are either unknown to, or ignored by, home health care agencies in Hawaii, who offer only “restorative” care.

By January 2014, the Center for Medicare Services (CMS) was supposed to have made agencies aware of the provisions of a lawsuit, Jimmo v. Sibelius, which was brought in 2011 by the Center for Medicare Advocacy to mandate the enforcement of the “maintenance” care program of Medicare.

Unlike restorative care, maintenance care is not based on improvement in the patient’s condition. Depending on a physician’s Program of Care (POC), the patient may receive up to 35 hours a week of skilled services. Ideally, home health agencies in Hawaii would adhere to Jimmo v. Sibelius and give caregivers, as well as patients, the support they need.

Clearly, everyone would benefit financially and healthwise from implementation of the maintenance program, but, despite Jimmo v. Sibelius, it is not available in Hawaii. The requirements and provisions of the maintenance program are set forth in Medicare benefits manuals. Yet, home health agencies refuse to provide them.

The Elderly Affairs Division of the city’s Department of Community Services needs to inform caregivers and patients who suffer from spinal cord injury, degenerative diseases such as ALS (Lou Gehrig’s disease), post-stroke victims, and other debilitating conditions about this life-enhancing program.

It deserves to be implemented now in Hawaii, as it reportedly is in other states, such as Massachusetts. Ignorance of the law is no defense for home health care agencies. They need to get with the maintenance program.

Honolulu resident Jean E. Rosenfeld is a retired historian of religions who takes care of a doctor/husband with a complicated medical history.