Carol Levine directs the United Hospital Fund's Families and Health Care Project, which focuses on developing partnerships between health care professionals and family caregivers, especially during transitions in health care settings. She contributed a chapter on family caregiving for RSF's free e-book, Universal Coverage in Long-Term Care in the United States.
Q: Your chapter looks at the position of the family caregiver in providing long-term care in America. You had to take on this role after your husband suffered a brain injury – could you talk a little about your experience in dealing with institutions and health personnel during this period? What surprised you? Where did you feel the system made it harder for you in your role as a family caregiver?
A: My late husband and I were in an automobile accident in January 1990. While I was uninjured, he had a severe brain stem injury, was in a coma for four months, suffered a medical error that caused the amputation of his right forearm, and was finally able to come home after months of rehab. He was quadriparetic, meaning that he had no use of his remaining arm or legs, and had impaired cognitive function. I was surprised–appalled would be more accurate–to find out that he was not eligible through his private employer-based insurance for any paid home care after a few weeks because he was considered a "custodial" case. He was not even eligible for physical therapy that might maintain the progress he had made in rehab. No one told me the truth about his prognosis or the incredibly difficult care he would need at home. As for me, doctors, nurses, and social workers assumed that I would quit my job, spend all our resources, and go on Medicaid. I was told quite frankly, "Your life is over. Get used to it." I did not accept that ungracious advice, continued to work, paid privately for home care and physical therapy, and kept him home for 17 years. The health care system was quite willing to spend enormous resources to save his life but not a penny to maintain his quality of life or to support me in my willingness to keep him at home and out of a nursing home at public expense. When we left rehab, the staff cheerfully waved goodbye and said, "You’re on your own now." No one should be abandoned like that.
My work at the United Hospital Fund since 1996, directing the Families and Health Care Project and the Next Step in Care campaign, has been devoted to changing the system so that other family caregivers are treated more humanely and supported in their choices.
Q: You argue that family will – and should – remain the primary provider for long-term care for the elderly. And yet, there is a widespread perception that Americans have, as you write, "abandoned their elderly relatives en masse." Give us some data on the subject – whom do most older people rely on for care and assistance?
A: Most older people are cared for in the community—in their own homes or in family members’ homes. At least 80 percent of long-term care – or long-term supports and services, in the newer terminology – is provided by family members, typically adult children and spouses, but also other relatives, partners, and friends. They generally do this without the assistance of the formal health care system – nurses, home care aides, therapists, and others. They provide personal care, household management, and increasingly medical/nursing tasks like managing various types of medication, wound care, monitoring medical equipment, and other daunting tasks. The formal home care that is available through Medicare or private insurance is short-term and part-time, typically after a hospitalization. Medicaid does pay for long-term care, largely in nursing homes but also for some people in the community. Medicaid home care services vary considerably by state.
