Nearly 3 million disabled and elderly Americans rely on Medicaid to provide home health aides, personal care attendants, group homes, adult day care, meals, transportation and other services that enable them to stay in their homes and communities and out of nursing homes.
The new health care law contains some good news for those people, and for others who qualify for “home and community based services” (HCBS) through Medicaid. Several provisions that recently went into effect are designed to clear the way for states to spend more of their Medicaid allotments on HCBS, rather than on nursing home care.
Disability rights advocates are pleased that the law removes many barriers that, in the past, have been used to deny HCBS to qualified individuals. But they caution that the fight is far from over, and that officials in many states will need to be prodded and monitored to ensure that these provisions are enacted and enforced.
Advocates are pushing for more HCBS because studies have shown that people who are elderly or disabled are generally happier and healthier when allowed to remain in their own homes, or in community-based settings such as adult care homes, rather than in nursing homes. The federal Centers for Medicare and Medicaid Services (CMS) supports the move because other studies have shown that while initial costs are higher, states can save money in the long run by switching to HCBS.
Dragging their feet
After passage of the Americans with Disabilities Act in 1990 and, especially, the Supreme Court’s Olmstead decision in 1999, states have been on notice that they must end unnecessary institutionalization of people with disabilities. But according to disability rights attorney Steve Gold, who practices in Philadelphia, many state officials, under pressure from the nursing home industry and other powerful groups, have dragged their feet in switching their emphasis to HCBS.
“Congress and CMS have given states enormous flexibility in the past five years,” Gold says, “but most states have not taken advantage of the options.”
Gold cites a new study that shows some slight movement since 2004 toward more spending on HCBS and less on nursing homes, but the ratio nationally remains skewed toward institutional care. In 2009, 66.2 percent of Medicaid dollars were spent on nursing homes, and 33.8 percent on HCBS.
The ratio varies widely from state to state, according to the study. Rhode Island has the highest percent of Medicaid money going to institutional care (95.6 percent), and New Mexico has the lowest (31.2 percent). Most states still spend at least two or three times as much on institutional care as on HCBS.
“Some states seem ripe for class-action Olmstead litigation,” Gold comments. “No one should be in a nursing home who doesn’t want to be there.”
Under the new provisions, states have more flexibility than ever in determining how to spend their Medicaid allotments. The law was written to address a number of issues that in the past have stopped states from providing more home- and community-based services.
Among the new provisions:
Not a panacea
At the same time as disability rights activists tout HCBS as a preferable alternative to institutional care, they also caution that these services are not a cure-all for the problem of abuse and neglect of vulnerable people.
An investigation earlier this year by the Seattle Times found a number of problems with adult care homes in Washington state, including scores of cases of people being locked in their rooms, tied to their beds at night, strapped to chairs during the day, drugged into stupors or denied needed medical care. The investigation found many adult care homes employed unlicensed and untrained staffers and that dozens of residents had been injured or died prematurely from substandard care.
So, even as Washington has succeeded in greatly expanding the provision of HCBS — its Medicaid spending ratio is 38 percent on institutional care and 62 percent on HCBS, the second best in the nation after New Mexico — it needs to do a better job of regulating and overseeing these services, advocates say.
How to get involved
States have until the end of the year to submit plans to the federal government on how they intend to implement the new provisions, which went into effect in October. Steve Gold recommends that people find out about their state’s plans by contacting the state’s office of Medicaid services, and that they work with local advocacy groups to keep the pressure on.
Gold also advises people in nursing homes who don’t want to be, as well as people who are being forced into nursing homes against their will, to contact him or another disability rights attorney. “We have won a lot of individual cases for people who are institutionalized who want to get out,” he says. “We have won the right for people who need 24/7 care to stay in their homes.”
Gold also suggests filing complaints against the state with U.S. Attorney General Eric Holder, and sending copies to Tom Perez, assistant attorney general for civil rights, and John Wodatch, chief of the disability rights section. The address is the U.S. Department of Justice, 950 Pennsylvania Ave., N.W., Washington, D.C. 20530.
For more information:
A complete state-by-state breakdown of Medicaid funding percentages can be viewed on Gold’s website.
See also the CMS letter to state Medicaid directors detailing the new changes; and an abstract of a study on the costs of HCBS versus institutional care on the Center for Personal Assistance Services website.