Apparently the New York State Department of Health (DOH)'s politically-influenced tolerance of abuse and neglect at the Northeast Center for Special Care (see AccessAbility, Fall 2001) is just the tip of a vast iceberg. This spring the New York Times exposed horrendous widespread neglect and abuse of people with mental health disabilities living in privately-operated "adult homes" that are overseen by DOH. The Village Voice reported that adult-home-industry lobbyists with financial ties to Governor Pataki and the Republican party are serving as highly-paid DOH officials. Pataki has responded to the worst episode of systematic institutional abuse and neglect since Willowbrook in the early 1970s with a proposed bill that would increase oversight of these facilities but does not address the fatally-flawed concept behind them.
Many people, when they hear the term "adult home", imagine a home-like atmosphere for a few people with disabilities living at one address and receiving individualized supports and assistance. In fact, the adult homes in New York City that were the subject of the Times expos, are huge warehouses ranging in size from 60 to over 350 beds. In many of them, two or three people live in each room with no reliably-provided support or assistance; when provided, such supports rarely go beyond basic room, board, and medication.
In its exhaustive, year-long investigation, the Times found that adult homes are typically extremely understaffed and what staff they have are untrained, unskilled workers making little more than minimum wage. There do not appear to be many enforced requirements concerning supports and services for the residents. As a result, they often have nothing better to do than sit in their rooms, wander the halls, or brawl violently with each other. Most do not receive assistance to work or volunteer in the community, learn new skills, or develop integrated social lives. Many whose symptoms could be significantly improved with modern medications, peer support, and psychosocial treatment apparently do not receive any regular services at all. It is common for residents to experience uncontrolled seizures, outbreaks of paranoid delusion, or paralyzing depression without any intervention or even regular observation by staff. Adult home residents die at an appallingly high rate, but the circumstances--or even the simple fact--of those deaths are rarely reported to DOH. When they are, DOH typically does not investigate. Despite a 1994 law requiring adult homes to report deaths, out of nearly 1,000 deaths over 6 years that the Times documented, only three appeared in DOH records. Some of these deaths are due to natural causes, but many more result from overheating, suicide, or easily-treatable illness or injury. The bodies may not be discovered by facility staff for hours or days, and are buried in paupers' graves marked only by numbers. These journalistic findings were foreshadowed by reports issued by the NYS Comptroller and the state Commission on Quality of Care that state officials ignored. When confronted by the Times reporter, DOH officials promised to issue specific regulations informing adult home operators that the death notification law must be obeyed. Seven weeks later, no such regulation had been issued.
Here are just a few examples of what the Times found:
Research conducted by New York State indicates that people with psychiatric disabilities are twice as likely to die during heat waves as members of the general population. This is because their medications often reduce their ability to sense heat or to sweat, and those with severe symptoms are less likely to take precautions such as drinking more fluids. However, there is no requirement that adult homes in New York City, where summer temperatures can reach the upper 90s or higher for days at a time, be air conditioned. In one incident, a resident in a top floor room died of overheating because the facility's staff refused to check on her; they said it was too hot for them to go up there. In July 1999, 17 adult home residents died of overheating alone.
Another resident experienced heart attack symptoms, including chest pain and shortness of breath, for over 48 hours. She complained repeatedly and was examined by both a nurse and a physician, both of whom misdiagnosed her symptoms as "anxiety". She called her sister, told her that she thought she was having a heart attack, and that the staff were ignoring her. Her sister called the home and the staff told her the resident was fine. The next morning she was found dead on the floor of her room; the autopsy showed heart failure.
In one home, a man with a history of violent attacks (he had stabbed and beaten up several members of his family) lived in a tiny room with two roommates, both of whom he repeatedly threatened with knives. The man's dangerous behavior was well-known by the staff, who were afraid to deal with him. His behavior and threats were documented by various psychiatrists who treated him for short periods but apparently had no ongoing responsibility for his care. One day he stabbed one of his roommates 20 times in the chest and neck, killing him. The roommate usually called his mother twice a day. When he missed the first call, she called the home to check on him and was told everything was fine. When he missed the second call, she went to the home but the staff wouldn't let her in. It wasn't until much later that night that the police told her that her son had been murdered.
The Times also found several cases of people who killed themselves, many by jumping out of facility windows or off roofs, whose suicide threats had received no special attention and whose deaths were not investigated. Residents were frequently seen unbathed, naked, and/or immobilized by psychosis or depression and sitting in their own wastes. One staff person whose job was to dispense medication was found to be nearly illiterate.
A lot of this information came from deficiency reports filed by DOH inspectors. While the operators of a couple of homes were forced to sell the facilities to new owners and get out of the industry, it appears that in most cases no significant follow-up or enforcement measures to address these deficiencies were undertaken.
Following the Times expose, the Village Voice ran its own investigation of the politics of adult-home regulation. They found that in the late 1990s, the Empire State Association of Adult Homes and Assisted Living Facilities (ESAAHALF) was paying $150,000 a year for the lobbying services of Coppola, Ryan & McHugh. This was one of the top ten largest lobbying contracts in the state in 1997. The wife of the firm's Patrick McHugh is Martha McHugh, a former Director of Scheduling for Pataki, and now the DOH Assistant Commissioner for Intergovernmental Affairs; she makes $104,000 per year. Patrick McHugh's brother is Republican Congressman John McHugh, but in a possible indication of moral character, when interviewed by a Voice reporter, Patrick denied any relation to the Congressman and said he didn't know when his wife started working at DOH. The Voice also found that a former Executive Director of the McHugh lobbying firm, Susan Peerless, now gets $97,000 a year as a special assistant to DOH Commissioner Antonia Novello for "long-term care and advising on adult home matters". Peerless had earlier served on a Pataki-created task force to evaluate long-term care financing. The Voice reported, "Sources with firsthand knowledge of the Empire State's lobbying pitch say its primary message was simply: `Leave us alone.'" McHugh and other members of his firm have donated almost $18,000 to Pataki's campaigns and state Republican committees since 1995. ESAAHALF itself has made some $31,000 in contributions to Republican organizations. The association fired McHugh's firm in 2001 and hired two other lobbyists, one of which donated $68,000 to Republicans. The other has given $25,000 to Democratic Assembly Speaker Sheldon Silver's campaigns.
Although the state Comptroller reported in 1999 that New York's system for monitoring adult care homes was broken, and disability advocates have been criticizing the facilities for much longer than that, the Pataki Administration took no significant action until the Times began its 4-day front-page expose in April. On April 26 the Governor issued a press release announcing a proposed bill to address the problem. The bill would make it illegal for hospitals, nursing homes, and state institutions to release or refer people to adult homes that have been cited for serious and uncorrected violations affecting health, safety or welfare, or that do not have valid operating certificates. State agencies including OMH and OMRDD would have an additional responsibility to document that any such facility to whom a person is being released is able to provide services consistent with the person's needs. The maximum fine per single violation would be raised from $1,000 to $5,000, and a repeat violation within 2 years would carry a $10,000 fine. Facilities would no longer be able to escape fines by correcting problems within 30 days. Lists of cited facilities would be widely distributed to agencies and made public on the internet. The bill would attempt to beef up adult home monitoring by providing for "dedicated" staff to conduct unannounced visits and reviews; however, the press release did not mention any new funding, so it is unclear whether these "dedicated" staff would represent a real increase in monitoring activity. The press release also mentioned measures to improve medication management, provide more services to assist people with mental health disabilities to become more independent, and to increase consumer participation in the operation and oversight of adult homes. Again, however, no new funding for these measures was mentioned. Some disability advocates responded positively to this proposal.
STIC agrees that these are positive steps, but they fall woefully short of an appropriate solution to the problem. The problem is the very existence of these human warehouses. It has been repeatedly demonstrated that people with mental health disabilities respond well to effective individualized, peer-based integrated community supports. In these programs, people with severe mental illness and histories of non-cooperation with medication regimes have flourished--getting jobs, forming lasting social bonds, and achieving much greater levels of independence. Huge institutions, even with better monitoring and some more services, will never achieve these kinds of results. New York State blew its opportunity to create a high-quality community-based mental health system when it transferred money saved from its historic closures of psychiatric centers to the general fund and spent it on such things as education aid to wealthy school districts, multi-million-dollar pork-barrel projects like sports stadiums and cheese museums, and corporate welfare. It is time for New York's leaders to acknowledge that this policy was wrong, and reverse it. The Willowbrook scandal forced our state to accept responsibility not just to feed and house people with developmental disabilities, but to make strong efforts to improve their lives. The Willowbrook response was not perfect; it has made it hard to flexibly address the individual needs of "Willowbrook Class" members. But the principle of responsibility for providing high-quality services must be extended to people with mental health disabilities. Nor will much new funding be required. The Times reported that New York spends an average of $40,000 annually to keep a person in an adult care home. For that money, the state could rent a nice apartment and cover most of the cost of appropriate individualized supports for each of those inmates. A band-aid approach to fixing a corrupt and fundamentally segregated and inhumane service system is unacceptable. New York should adopt a phased plan to close all congregate facilities for people with mental health disabilities, including adult care homes, and transfer all of the money to peer-based individualized, integrated support services.
