Because many home care patients suffer from serious illnesses, a breakdown in care can be more than a frightening inconvenience; it can have life-threatening consequences.
Mark and Betty Madsen of Fridley relied for several years on a personal care attendant. Mark, who is 50, suffers from severe chronic lung disease, diabetes and a spinal injury; Betty suffered from bipolar disorder and severe depression.
When a Crystal Care worker stopped coming three times a week to help the couple with basic chores, their trailer home quickly fell into disarray. Dirty dishes piled up in their kitchen sink, and dog and cat feces covered much of their carpet. In April, Betty Madsen was taken to the hospital with a leak in her colon and died several days later from complications related to the surgery.
Madsen doesn’t blame Crystal Care for her sickness and death, but he does resent that she was left without care in her final months of life. “I felt like Crystal Care just abandoned us,” he said, as he wiped his eyes with a paper towel. “Betty deserved better.”
Needs deepened, skills did not
The home health care industry has changed profoundly since its inception four decades ago.
When states introduced personal care assistance programs in the mid-1970s, the attendants focused mainly on patients who were healthy but needed help with basic activities such as bathing and cooking.
From the outset, the federal Centers for Medicare and Medicaid Services (CMS) gave states almost complete discretion in defining the scope of personal care services. The CMS sets no minimum training guidelines for the 30-plus states that offer personal care assistance programs.
This absence of rules is largely by design. Regulators crafted personal care assistance services to be easily accessible, so that sick and frail people did not have to clear numerous legal hurdles and training requirements to get help with basic chores at home.
“Personal care assistance programs were meant to be very informal,” Harrington said. “The programs were small and the standards were lax.”
But a landmark legal case caused demand for home health care to soar. In 1999, the U.S. Supreme Court ruled that keeping people unnecessarily in institutions, such as nursing homes, was discriminatory and violated the federal Americans with Disabilities Act. The ruling emboldened disability rights advocates and large senior groups such as AARP to lobby for an expansion of home care services.
Home health care went from being a social service to a civil right. And state governments, desperate to rein in swelling Medicaid costs for institutional nursing care, were eager to oblige. They began to expand and promote personal care services as a more convenient option than nursing homes, which charge on average up to eight times more than care at home.
As state personal care assistance programs mushroomed in size, so did the medical needs of patients. By the early 2000s, patients who once would have been confined to nursing homes — including quadriplegics and people with severe dementia — were being cared for in their homes by unlicensed personal attendants. Attendants were also caring for people who had just come home from the hospital with intravenous feeding bags, open surgical wounds and ventilator machines.
Federal lawmakers have for years pursued measures that would expand access to home care, but only a handful of them have focused on protecting consumers from neglect. In May 2013, Sen. Al Franken, D-Minn., reintroduced legislation that would require states to develop a bill of rights for home health care patients, as well as specific plans to enforce them.
“It’s clear to me that staying independent and at home is a top priority for [seniors],” Franken said. “But in order to keep our seniors independent, we also have to make sure they’re safe.”
A merger goes sour
Sally Knutson and Jeanette Mefford, two nurses with decades of experience, founded Crystal Care in 2001, motivated by a common belief that people deserved to live in their homes.
“It’s what we believe and it’s what we’re passionate about,” Knutson said. “Home care makes people more happy and helps them live in dignity.”