In 2010, Washington State's then-governor Christine Gregoire made a decision that could potentially affect the self-determination of thousands of people in her state: she ordered the slashing of social service budgets by 10 percent across the board. Disability justice groups around the country quickly mobilized against the cuts. For many disabled people, the loss in funding meant the difference between keeping their home care assistants or being sentenced to nursing homes and effectively losing their independence.
Federal law says states must fund facilities like nursing homes, but whether they fund at-home care is left up to state governments. "While my heart is there, my pocketbook is empty," Governor Gregoire explained. As she would have had it, the forced ghettoization of thousands of disabled people was a sad but inevitable result of the recession.
Washingtonians with disabilities like Aditya Ganapathiraju were anxious. Prior to his spinal cord injury in 2002, he says, "I had a fairly typical life. I was really independent and whatnot." A motorcycle accident left the 18-year-old college student with mobility impairments. Unfortunately, "both my parents were deceased. I didn't have family that I could really go back to, and as a result, I had to go to the nursing homes."
Ganapathiraju's adjustment from able-bodied campus life to a highly regimented nursing home was rough. Like many facilities, his was run in a "one-size-fits-all" manner, even though people there had all sorts of disabilities. It was also isolated, far out in the suburbs of Snohomish County. "I couldn't just go down the street and go to the library or something. And so I really just craved interaction with someone." Even going to the hospital and chit-chatting with the doctors and nurses there became a treat. "More or less, when you're in a home [there aren't] people with whom you [can] converse with. It wasn't a great place for a 20-year-old, who was formerly fairly social, to find themselves in." The patient-to-doctor-and-nurse ratio was high, and most caretakers didn't have the specialized training to work with someone with a spinal injury. That made basic, daily functioning difficult.
Not long after entering the facility, Ganapathiraju wanted out and sought to live in the outside community with an assistant. But leaving proved difficult. "There's this institutional inertia where workers would kind of give you the pessimistic side of moving out into the community," he explains. His caseworker did little to facilitate the process ("It could have just been the thought of extra work that prevented him from being helpful," he speculates), but his persistence worked: he managed to find a family that invited him to come live with them, and he was paired with a more competent caseworker in neighboring King County. The new caseworker got the state to transfer funds that were going to the group home to a personal caretaker who could learn the specific needs of someone with a spinal injury. "It was liberating," he recalls. "It facilitated me re-entering school, because I couldn't have done that from a group home." Things were looking good, until Gregoire announced her cuts amidst the 2010 December holidays.
Around that time, disability justice activists, including Carl Peterson of the Autistic Self-Advocacy Network (ASAN), had what Peterson describes as a "really, really disconcerting call" with Gregoire's people. "They basically said, 'This is her budget, she's not going to make any changes to it.' It was horrible," he remembers. "It was her budget, and she felt very entitled that she had that power." The district attorney's office made the situation worse, according to Ganapathiraju, by trying "to convince the governor that if you back down on this issue, you'll never be able to make any cuts on any of your programs ever again. Which is not true, but that's the kind of message the governor was getting," he says.
And there's more trouble with Gregoire's "budget shortfall" argument: at-home "community care" is actually considerably cheaper than nursing homes and similar facilities. But the assisted-living industry is sinking billions into public relations and lobbying to make sure that state money is directed into their own wallets. Between 2011-2012, one company, Kindred Healthcare, spent over $3 million on lobbying, and donated more than $2 million to both Democrat and Republican party coffers. The lobbying seems to be working out for them: the $116 billion nursing-home industry gets between 60 and 70 percent of its funding from state governments, mostly through Medicaid.
According to an industry magazine that ranks nursing home companies by number of beds, in 2012, the top ten were proprietors of over 235,000 beds. Beds that are a money suck if they're empty but a potential goldmine when filled, particularly for the executives on top. Directors regularly make seven or eight figures off of facilities where a private room costs an average of about $87,000 per year. Compare that to the average wages of health aides, who make around $20,000 per year. Add to that home payments or rent, and even if those aides made a more livable wage, the cost difference is in the tens of thousands of dollars.
Pennsylvanian Jeff Petty got into the business 20 years ago. "I was just looking for a job," he explains frankly. "A lot of people in our industry have a passion; you know, 'I took care of grandma growing up; that left a searing kind of memory for me, so I went into the field.' That wasn't me. I was in big, corporate America, looking for an opportunity. I found one, and it happened to be in this business." Today, Petty heads up Wesley Enhanced Living, operating five facilities across Pennsylvania, which he calls "the Silicon Valley" of care facilities.
Petty, whose business caters mostly to seniors, believes the socialization offered by his "continuing care retirement communities" (CCRCs) helps combat depression. And even Ganapathiraju, who now sits on the Governor's Committee on Disability Issues and Employment, admits that often nursing homes are "Sometimes the only option, or the best option, especially for folks, say, with special needs, that need an extra kind of guide throughout the day." Still, the majority of disabled people (and seniors) would rather live outside of such facilities - even a place like Wesley, with its game rooms outfitted with Nintendo Wii systems, shuttles to the mall and concierge services. In fact, when asked whether or not he sees himself ever living in a CCRC, Petty laughs: "That's a great question. Everybody in the field, when they're my age, go, 'No.' As does everybody else. I have no idea, to be honest with you." So it shouldn't come as a surprise that in 2011, there were 511,000 people in the United States on waiting lists for waivers for home care services. Likewise, an AARP study from 2012 found that 64 percent of Medicaid long-term service dollars for older people and adults with physical disabilities went to nursing facilities, the study's authors noted, "even though most people prefer to live at home." (Meanwhile, the most recent Congressional report on the subject found that 9 out of 10 nursing homes were understaffed over a two-year period from 1999-2001.)
Jennifer McPhail, an organizer with the disability rights group ADAPT, believes that "there's an institutional bias within the system" against home care. "We've been trying to change the funding streams and policy decisions that lawmakers put in place," a process that requires negotiations and sometimes public protest or embarrassment of those lawmakers. In 1991, McPhail was one of 40 disabled people, many in wheelchairs, who refused to leave Texas' then-governor Ann Richards' office. Two days later, Richards agreed to move toward offering community-based care.
A senior legal counselor at the Department of Justice's (DOJ) Civil Rights Division, Eve Hill, is more optimistic: "Traditionally, states have made people with disabilities go into institutions like psychiatric hospitals or developmental disability centers or nursing homes to get their health care and other services, and over time we've come to realize that we don't have to gather all of the people with disabilities together" into these institutions. The segregation, she notes, "has led to sometimes problematic conditions for people when they're set aside, in a way, from the rest of the community" - conditions that include the depression Petty claims his facilities decrease. Some states, such as Nevada and North Carolina, "have been able to re-balance their programs, provide the services at often the same or lesser cost, and it works in every aspect." But other states are hedging on the issue. A Kaiser Family Foundation report released in December 2012 found that in 2009, Texas alone had nearly 100,000 people on its waiting list, more than double the number of people in its community care program.
On paper, the Americans with Disabilities Act (ADA) provides that disabled people are entitled to the "most integrated" setting and the Supreme Court's 1999 decision in Olmstead v. L.C. (known in disabled activist circles as disability's Brown v. Board of Education) found that people with mental disabilities should be allowed to live in the community, not institutions, on the condition that states have the resources to provide community care. In 2011, Governor Gregoire's cuts led to another case that was based around Olmstead, a case called M.R. v. Dreyfus. In Dreyfus, 12 disabled plaintiffs successfully argued that Washington's budget cuts would mean they wouldn't be able to get the hours with a care assistant they needed for basics like bathing, eating and going to the doctor. Their health would deteriorate, and they'd inevitably be sent to nursing homes. The plaintiffs won, but the fight wasn't over. Gregoire filed to extend the deadline for appealing the decision. Disability justice activists went into overdrive, calling in organizers from as far away as DC, New York and Texas.
In the case of Washington State, the pushback worked. After several protests, press conferences and petitions, Gregoire re-checked her pocketbook. In October 2012, Gregoire released an official statement: she would not challenge M.R. v. Dreyfus. It was a big win for disability rights advocates. ASAN's Peterson believes the national organizing made a "huge" difference. Without it, "honestly, we wouldn't have been able to pull this off," he says. "If we didn't organize, if that protest didn't happen" at the state capitol, "if those op-eds didn't get written, and what have you, I think she probably would have sent [the original budget] out."
In some states, nursing homes are already in decline. Minnesota, Tennessee and West Virginia decommissioned hundreds of beds between 2006 and 2010, while many others stayed static after a boom in assisted living facilities in the late 1990s. ADAPT and others are pushing for their Community Choice Act, which would make it easier to divert Medicaid funding from nursing homes to at-home care. The White House, the American Medical Association, and many in Congress are on board, though the Act was left out of the last round of federal health care reform. Taking notice, some nursing home conglomerates are expanding into home care. The second largest in the industry, Golden Living, got into the business in 2004 through its AseraCare offshoot. "When you go in the hospital, the first thing you do is, you get a wristband slapped on you, or a name on a door, and that means you're a patient. You've lost the ability to be a person," explains AseraCare's President Angie Hollis-Sells. "In home care, you can maintain personhood. And we want to be people, we don't want to be a wristband." Her company, which is being sued by DOJ after former employees alleged that it was defrauding Medicare out of millions of dollars, is paying close attention to the question of government funding. "Where is the dollar for health care gonna go? Is it going to reside with the patient? Is it going to reside with the payer? Is it going to reside with the physician, or with the hospital?" Hollis-Sells says the question is not going to go away.
It's one point that industry, activists and government agree on. "This is an issue that will deserve our attention well into the future, especially as more people live longer," says Ganapathiraju. Politicians like Wisconsin's Paul Ryan and Tennessee's Rand Paul keep eyeing home care programs as an area to cut, even if, as disability justice activists are well aware, those cuts will be more expensive in the long run. "This type of challenge to the reduction of benefits, or the reduction in looking after folks with impairments, is not going to go away anytime soon."