Free Our People
If, as a memorial, I was to shed a tear for every person who has suffered physical, emotional or sexual abuse while residing in a segregated congregate facility, my tears would be flowing for years.
The flow could be slowed, although sadly probably never completely stopped, if people lived in natural settings in the community, where they were constantly seen by and interact with people at work, in church, at a baseball game, or anywhere else, people who were not paid to serve them.
Institutional settings, large and small, breed a culture in which abuse can easily occur and be covered up. This is an unchanging fact, demonstrated most recently by a recent New York Times expose of pervasive abuse in state-operated group homes (see OPWDD Faces Group Home Scandal).
Advocates like STIC have been practically shouting from the rooftops about the opportunity for, and prevalence of, abuse in segregated settings for well over a decade, but so far no one has listened. Will they now?
Recently, a developmental center closed—great news—but then our gladness was destroyed by the announcement that several group homes were opening to replace it.
We know that these things occurred before Commissioner Burke’s watch, that the closures and the group homes were all in process, so it is with the highest hopes that we again raise our voices and plead for a true change in policy that will end segregation for everyone once and for all.
The task is daunting, we know, and we don’t expect such a transformation to happen immediately, but if we truly want to protect “vulnerable people”, the best way to do it is to make sure they aren’t hidden away behind institutional walls where anything can happen and the public may never know.
We were pleased at the appointment of Commissioner Burke to oversee OPWDD and Roger Bearden at CQC, and it is with optimism and an open mind that we look forward to working with both of them as they face the challenges of a system entrenched in segregation.
If we all work together, we can achieve our ultimate goal to “Free our people”. Let that be the memorial.
EDITOR: KEN DIBBLE
LAYOUT: JESSE BISHOP
135 East Frederick St.
Binghamton, NY 13904
News & ANALYSIS
OPWDD Faces Group Home Scandal
On March 12, the New York Times reported an investigation of OPWDD-operated group “homes”. The Times found widespread abuse of residents, including physical and sexual assaults, committed by employees who, even when they had multiple offenses on their records, were rarely prosecuted or fired. Instead, they were placed on temporary leave, moved to a different location, or had vacation time docked. OPWDD supervisors consistently violated state law by failing to report crimes committed by employees to the police.
A week before the article appeared, Governor Cuomo fired OPWDD Acting Commissioner Max Chmura and replaced him temporarily while seeking a new permanent chief. A few days later he appointed Courtney Burke. Burke, unlike most recent OPWDD heads, had never worked for the agency and was known primarily as a Medicaid policy analyst. Cuomo gave no reason for the suddenness of these moves, but the Times said Cuomo had advance notice of its investigation, which led to the dismissal.
The Times claimed its investigation also caused Cuomo to fire Commission on Quality of Care (CQC) Chair Jane Lynch at the same time. (The CQC is supposed to independently oversee OPWDD and investigate incidents, but had in recent years largely abandoned that function. It was publicly lambasted in 2008 by the NY Medicaid Inspector General (MIG) for failing to investigate the Jonathan Carey Anderson School incident. CQC Chairperson Gary O’Brien resigned following the MIG’s report and was replaced with Lynch, with little impact on agency activities.) The Albany Times-Union reported that Cuomo Administration officials said Lynch had resigned shortly after Cuomo took office and Cuomo was now accepting the resignation. Still, Lynch was also immediately replaced with an “acting” Chairperson, and a few days later with a new permanent head, Roger Bearden. Bearden is a respected disability rights lawyer who played a central role in the DAI v Paterson suit, in which OMH was ordered by a federal judge to move people with mental disabilities from adult “homes” to supported living.
Former CQC Commissioner Clarence Sundram was also brought in to serve as “Special Advisor on Vulnerable Persons” to the CQC, all of the state agencies that serve people with disabilities (including OPWDD), and Cuomo’s SAGE Commission on governmental reorganization.
The Times said it “reviewed 399 disciplinary cases involving 233 state workers who were accused of one of seven serious offenses, including physical abuse and neglect, since 2008. In each of the cases examined, [OPWDD] had substantiated the charges, and the worker had been previously disciplined at least once. In 25 percent of the cases involving physical, sexual or psychological abuse, the state employees were transferred to other homes.”
OPWDD tried to fire the worker in 129 of the cases but succeeded in only 30, “in large part,” the Times reported, “because the workers’ union . aggressively resisted firings in almost every case.” In the other cases, workers who had beaten residents, used racial slurs against them, or neglected them were merely suspended, fined or lost vacation time.
The Times said, “And, despite a state law requiring that incidents in which a crime may have been committed be reported to law enforcement, such referrals are rare: State records show that of some 13,000 allegations of abuse in 2009 within state-operated and licensed homes, fewer than 5 percent were referred to law enforcement.”
Many examples were given in the article.
In the most shocking incident, “At a home upstate in Hudson Falls, two days before Christmas in 2006, an employee discovered her supervisor, Ricky W. Sousie, in the bedroom of a severely disabled, 54-year-old woman. Mr. Sousie . was standing between the woman’s legs. His pants were around his ankles, his hand was on her knee and her diaper was pulled down. The police were called, and semen was found on the victim. But the state did not seek to discipline Mr. Sousie. Instead, it transferred him to work at another home.”
Despite having a witness and physical evidence that clearly proved Sousie’s guilt, the police did not take the report seriously because the victim was nonverbal and unable to describe what had happened. They did not try to get a DNA specimen from Sousie to compare to the semen. The police chief and prosecutor later falsely claimed that DNA procedures were not sufficiently advanced at the time. Only when a conscientious police detective got interested in the case more than two years later was the investigation moved forward and charges were eventually brought.
Meanwhile, OPWDD put Sousie on administrative leave for a while, then returned him to work at another group “home”. Although OPWDD made no effort to dismiss Sousie in this case, some years earlier it had tried to fire him for assaulting a co-worker. In that incident, the agency made a deal with the union to put him on probation for two years, fine him 2 weeks’ pay and 6 days of leave time, and require him to undergo counseling.
In another example, an employee threw a resident against the wall and was moved to a different group “home”. This worker had been moved four times over ten years for “disciplinary reasons”
Another employee had been convicted of a misdemeanor for beating up a 99-year-old man while moonlighting in a nursing facility but was still allowed to keep his OPWDD job.
“. an employee at a group home on Long Island, left a resident soiled with feces and urine and suffering from a broken leg on her bedroom floor for more than an hour.. [The worker] was suspended. . she said she was taking care of too many residents and covering for an absent co-worker at the time. It was her 13th. disciplinary write-up since 1994.
Another employee, in the Finger Lakes region, was fined $375 after allowing a person in her care to sit in a van in her own feces for five and a half hours.
In 2009, the state recommended firing .an employee in western NY who told a resident, ‘Why don’t you get a Brillo pad and scrape the black off you?’ [The worker], who had previously been written up for abuse, sleeping on duty, medication errors and neglect, was reassigned, and was only later fired for violating his probation.
"Another employee in western New York, picked up a knife and pointed the blade and shook it at a resident . and kicked a resident in or about the buttocks. The state called for her firing, but she was suspended and transferred to another home instead. The next year, after being written up for 10 different incidents of verbal abuse, neglect and mistreatment, she was fired.”
OPWDD officials blamed the employees’ union for much of this, claiming that it is extremely difficult to fire employees for cause. A union spokesperson acknowledged that it zealously represents its members in disciplinary actions and claimed that it had a responsibility similar to that of criminal defense attorneys to put on the best possible defense regardless of the seriousness or truth of any allegations.
The Times also reported that, “Little supervision is provided on-site, and it is often up to staff members to turn in their colleagues when one misbehaves.”
The Times found evidence that apparent efforts to cover up conditions at OPWDD group “homes” extended to the top levels of the agency.
A whistle-blower, Jeffrey Monsour, filed several complaints about things he had observed in an upstate group “home”. For example, he reported that he was ordered to document in a resident’s record that the resident had met the state’s requirement of being able to evacuate the residence within 3 minutes on his own in an emergency even though the resident couldn’t do so. (OPWDD applies this unrealistic rule to all group “home” residents regardless of their level of disability.)
Having been criticized by his superiors for his attitude, Monsour used a Freedom of Information (FOI) request to get fire drill records and found claims that people were able to evacuate from their beds in the middle of the night in under 3 minutes, which he knew was impossible. He told then-Deputy Commissioner Max Chmura about it but no action was taken. After four residents died in a group “home” fire in the Adirondacks in 2009, Monsour emailed Chmura to ask why his complaints “fell on deaf ears.” Chmura assured him his information was being reviewed.
Monsour used FOI requests to get more data, including evidence that supervisors were often absent from group “homes” and that allegations of abuse of residents were being ignored. His supervisors retaliated, calling him in for repeated questioning and filing disciplinary actions against him.
In 2010 he wrote to Governor Paterson and Attorney General Andrew Cuomo to request an investigation. Paterson didn’t respond. Cuomo referred the matter back to Monsour’s superiors.
As the Times reported, “Mr. Monsour’s efforts appear to have had little effect on the culture inside the agency. Employees across the capital region, the area where Mr. Monsour works, were recently warned to keep quiet about episodes inside the group homes. One handout distributed by management bluntly directed employees not to mention reports of abuse in daily progress notes kept on residents. Doing so, the handout warned, could make them subject to subpoena. ‘DON’T report in your notes that an Incident Report was filled out’, the instructions said, adding: ‘IF IT ISN’T DOCUMENTED, IT WASN’T DONE.’”
After the Times article appeared, several state legislators held a news conference to express outrage, said they would hold hearings to investigate OPWDD’s conduct, and announced that legislation would be forthcoming. At press time, one hearing had been held, at which Commissioner Burke appeared, but no legislation had been announced.
Special Advisor Sundram, who in his days as CQC Chairman in the 1980s and 90s was known for his aggressive stance on investigating and publicizing problems at OPWDD and OMH, was purportedly reviewing CQC operations.
Meanwhile, Burke’s office issued several directives. State workers and not-for-profit providers were reminded, several times, that state law requires any apparent crimes to be immediately reported to the police. Group “home” supervisors and staff were to be given “refresher training” on “principles that demonstrate individual respect, dignity and professional ethics in the care of vulnerable persons, as well as methods of preventing and reporting abuse and neglect”, and OPWDD would make “leadership visits to all 1,051 State-operated homes to examine the quality of care being provided and to . reinforce expectations for quality care.” Burke also announced that minimum education qualifications would be applied to new group “home” hires, supervisors would be required to make spot checks at the facilities during evening and weekend hours, and a new internal review board would be created to look at incident reports.
New CQC Commissioner Bearden told providers that CQC would conduct an exhaustive review of past incident reports and of providers’ investigations of them.
Disability advocates in the Independent Living community strongly criticized these measures. They pointed out that previous criminal activity, especially a record of abuse or assault, would be a better predictor of unsuitability for employment by OPWDD than lack of a high-school diploma, but that OPWDD is not considering a prohibition on hiring violent offenders. They noted that, as the Sousie case shows, police typically don’t seriously investigate, and DAs don’t prosecute, reports of abuse by staff of segregated disability facilities, both because they don’t consider the victims credible and because they don’t think the facilities are subject to their jurisdiction. Thus reporting crimes to the police, while required by law, isn’t likely to accomplish much. An internal OPWDD review board would be just as likely to downplay or cover up abuse as any other OPWDD employees. Without a requirement that serious incidents be promptly investigated by an independent outside authority, advocates said, nothing is likely to change.
The Times article was accompanied by a sidebar indicating that it was the first in a series. As we went to press, the paper had published a second article on abuse and neglect in developmental centers.
OPWDD & Managed Care:
Brave New World or Been There Done That?
In April, OPWDD announced plans to convert all of its services to managed care over the next 5 years. It published a “concept paper” and invited comments from people with disabilities, family members, and advocates, and held public hearings on the plan in May and June around the state.
Although the concept paper provides few details on what OPWDD actually plans to do, it is interesting, and alarming, for several reasons.
DOH and various governors have pushed “managed care” for Medicaid since the mid-1990s. Essentially it makes Medicaid an HMO, where you have to go through a “gatekeeper” before you can get treatment. In theory this cuts costs as compared to ordinary “fee-for-service” Medicaid, where recipients can get appointments, treatment, and prescriptions from doctors at will. Medicaid for nondisabled New Yorkers has been managed care for a while now.
The concept makes less sense in the realm of long-term care, which includes homecare services, nursing facilities, and just about everything that OPWDD does—including skills training and supported employment. That’s because access to those services is not, and never has been, “at will”; recipients must be deemed specifically eligible for the services, service needs must be documented via clinical assessments, and recipients usually must have approved service plans with specified service types, frequencies, and durations. In other words, most long-term care is already “managed” to ensure that only needed services are provided and costs are controlled.
Just because it doesn’t make sense doesn’t mean it hasn’t been tried though. There are managed care providers for personal attendant services in New York City.
A managed care provider gets a fixed rate for each person served, from which it must cover administrative costs (and, perhaps, make a profit) as well as pay for services. The “gatekeeper” limits access to services to keep total spending below the rate. This works for people who don’t need much service. However, many people with disabilities aren’t in that category, so one of three things happens: Providers may: “cherry pick” people with few needs and the rest stay on ordinary Medicaid; accept people with greater needs but not meet all of them, compromising health and safety; or get a higher rate for people with more needs, and save no money. Mostly what happens today in NYC is cherry picking, but that’s because only a few groups of people with disabilities are required to use managed care. As DOH enacts Cuomo’s Medicaid Redesign Team plan to move all recipients into managed care (see State Budget: A Managed Disaster), we will first see people’s needs neglected, and as complaints and lawsuits rain down, rates will rise and savings evaporate.
Medicaid is, under federal law, an on-demand system that must be equally available to all eligible people, as laid out in a “State Plan”. In order to limit access to services, whether to offer special services to certain groups or to control costs, states must seek “waivers”—that is, they must get federal permission to waive provisions of Medicaid law. There are two common types of Medicaid waivers: 1915(c) Home and Community Based Services (HCBS) waivers, and 1115 Managed Care waivers. OPWDD currently provides most services through a combination of state funds and HCBS waivers (some things, like Service Coordination, are State Plan services). OPWDD wants to convert nearly all services to a single 1115 managed care waiver.
Does that mean that the waiver services that tens of thousands of New Yorkers have come to depend on will no longer exist? No. But the HCBS waivers and the rules that govern them will be gone. And it is possible that these services—and others—will be changed significantly.
Long-term care services, including HCBS, are already “managed”. It’s unlikely that gatekeepers could directly restrict their availability more than current rules already do. What is likely is that they will form an extra layer of administration that must get paid, and the money for that will come out of what is now paid to the people who actually provide the services. Rates will be cut, and many providers won’t be able to afford to provide services, or to pay workers enough to keep them on the job. You think it’s hard to get enough hours of res hab now? Just wait.
This is not a fantasy. The relatively new Bridges to Health waiver has lost several providers recently due to unrealistically low rates, and the OMH PROS supported employment program never really got off the ground for the same reason.
But that’s not all. HCBS waivers have some regulations designed to promote community integration that don’t exist for 1115 waivers. Recently the federal Centers for Medicare and Medicaid Services (CMS) proposed to make those rules much stronger. It is probably not a coincidence that OPWDD has chosen to convert its waivers at this time.
Advocates have long criticized the dependence of states’ developmental disability systems on congregate living facilities. While they supported closure of large institutions, they realized by the early 90s that people being moved from those places into group “homes” had little real interaction with the community and even less personal freedom. Meanwhile, a growing sum of HCBS waiver money was being used to fund these mini-institutions. CMS began hearing complaints that the terms “home” and “community” had become a mockery. These complaints reached a climax when some states tried to erect clusters of group “homes” on the grounds of larger institutions that were being closed, and called them “community living”. CMS had to act.
What they proposed is revolutionary. CMS says that places that have “institutional qualities” will not be allowed to use HCBS waiver funds. CMS defines “institutional qualities” as “regimented meal and sleep times, limitations on visitors, lack of privacy and other attributes that limit individuals’ ability to engage freely in the community.” CMS also says that HCBS waiver funds will no longer be allowed to pay for services provided in housing that is “designed expressly around an individual’s diagnosis or disability”, and that all HCBS waiver services must be provided in settings that enable “individuals with disabilities to interact with individuals without disabilities to the fullest extent possible.”
Most residences operated by OPWDD and its contractors have institutional qualities as defined above. And all Individual Residential Alternatives (IRAs), are “designed expressly around” the “diagnosis or disability” of the people who live in them. So it would seem that the new HCBS regulations will require OPWDD either to convert its entire residential service system to integrated natural home settings, or stop funding it with HCBS waiver money. It looks like OPWDD is opting for the latter, by going to an 1115 waiver that doesn’t have those regulations.
We think this is one of two primary motivations for OPWDD’s concept paper.
The other is the scrutiny the agency is getting for its rate-setting practices. As we’ve reported, OPWDD gets a daily rate for each person in a large institutional setting (developmental center or “specialty unit”) that is around four times the actual cost of serving the person there. (The rate recently rose to $5,118, while the actual cost, reported by the Poughkeepsie Journal on April 22, is $1,220.) Due to this rate mechanism, OPWDD uses about 17% of all Medicaid funds that the US spends for developmental disabilities services, even though only 6% of the people eligible for them are New Yorkers. The rate mechanism was negotiated with, and approved by, CMS officials, who now claim that they weren’t fully aware of its fiscal implications. It was designed as an incentive to release people from institutions, by letting the state keep most of the money it got to serve people in those places after they left them. But the state got “hooked” on that money and saw that it would lose it if it didn’t keep putting people into big institutions and moving them out into smaller ones. Last summer OPWDD officials insisted that they would keep some 1,000 people cycling through large institutions forever.
So one of the most striking things in the concept paper is the statement that OPWDD intends to achieve a “reduction in enrollment approaching 100 percent” in large institutions. (Another notable line is: “The State plans to restructure resources for community-based service options in order to create real choice for people living in institutions so they can transition to the community, as well as those currently residing in the community.” This is a tacit admission that up to now, the agency has not provided real choice, despite its claims to the contrary.)
Less striking, but more to the point, is this: “In the first year of the Waiver, the State will work with CMS to revise the Medicaid State Plan to ensure that per diem rates for ICF/MRs more closely reflect the actual cost of providing services.” (OPWDD’s big institutions are all ICFs.)
The paper appeared in April, as the heat generated by the Poughkeepsie Journal’s ongoing articles reached a boiling point. OPWDD’s disproportionate share of federal developmental disability funds got national attention. In April, the Journal quoted Iowa Senator Charles Grassley as saying the situation in NY “requires closer scrutiny. If states are gaming Medicaid formulas and abusing taxpayers to get federal funding to subsidize their budgets at large, that’s subverting Medicaid’s purpose, which is to provide health care to the poorest citizens.” Although OPWDD insists that the extra money it gets for people in institutions is used to pay for its “community-based” services, Paul Stavis, a former second-ranking attorney in DOH who worked with various disability-related state agencies for 25 years, told the Journal that “The money is going for other than Medicaid purposes. This is a dirty secret that nobody wants to talk about. All of this money winds up in the general fund and is spent however the governor and Legislature want.” DOH is responsible for setting rates and Medicaid procedures for OPWDD.
This turn-around didn’t happen because we just got a new OPWDD Commissioner or even a new Governor. It became clear last fall, after the first Journal articles appeared, that the status quo could not be maintained. On May 13 of this year, the Journal reported that it had obtained, through a Freedom of Information request, a letter sent to DOH by CMS on November 5, 2010. The Journal said the letter was sent because a previous DOH response to CMS questions was not adequate. The letter, the Journal reported, says that “$2 billion-plus in institutional costs claimed by New York are ‘dramatically different’ from the actual cost of care, put at $577 million. Further, they say costs ‘appear [to be] in excess of’ the maximum allowed for reimbursement and ‘far exceed the rates paid’ to other facilities that provide high-level care” to people with developmental disabilities. The Journal said the letter requested detailed explanations of how NY “‘has interpreted the term “allowable costs” for state operated developmental centers,’” and “how its ‘interpretation complies’ with statutory limits that prohibit payments above a reasonable threshold.” The Journal reported that on December 6 DOH replied with a letter that said little more than that the “method of computing the rate ‘is consistent with [the] definition of allowable costs’ and, it adds pointedly, is a formula ‘the state has consistently used . over the past 20 years.’” Apparently as a result of that unresponsive response, the US Department of Health and Human Services Inspector General initiated an audit of DOH and OPWDD.
Release of the concept paper followed discussions between OPWDD and CMS officials earlier in the year, according to an announcement by Commissioner Burke. Burke was only appointed in mid-March, so it is likely those discussions began before she took over. In fact, it’s likely that some “discussions” began as soon as it became clear that the feds weren’t going to buy DOH’s and OPWDD’s explanations of their actions, now that the story had gone public, no matter how deeply complicit CMS had been in them.
The only other area of emphasis in the brief, vague concept paper is a paragraph discussing so-called “safety net” services. Although former OPWDD Commissioner Diana Jones-Ritter had declared an official policy to close all OPWDD-operated and funded sheltered workshops, the paper calls workshops a “safety net” service that must be preserved and funded by the new waiver. It also proposes to continue to fund “out of home” and “out of state” placements of minor children with developmental disabilities in segregated residential schools (like the Anderson school, which mistreated Jonathan Carey).
The paper, and the public-comment period that followed, were presented by OPWDD officials as a reform effort intended to increase choices and integration for people with developmental disabilities. But advocates were concerned that this was window-dressing concealing a desperate effort to find a way to continue doing business as usual, by using an 1115 managed care waiver to avoid more stringent HCBS waiver regulations and to design a rate mechanism that will satisfy the feds and keep them from reclaiming billions of dollars spent under false pretenses.
Former DOH attorney Stavis lent credence to these concerns when he told the Poughkeepsie Journal in April, “This is just another example of some fancy footwork by the [state] rate-makers to keep ill-gotten gains . nothing more than an attempt to get out ahead on the federal inquiry, now that [the state’s] rip-off of Medicaid has become public.”
As we went to press, STIC was working with the New York Association on Independent Living to prepare a response to the paper and start a dialog with OPWDD and Cuomo Administration officials. We also urged people with developmental disabilities, and their families and supporters, to attend the public forums and deliver the message that current and future HCBS regulations requiring integrated settings must be followed, and that managed care gatekeepers must not be allowed to reduce services.
As our Winter 2010-11 Editorial said, if NY officials try to reduce the availability of homecare services while still maintaining segregated residential programs for people with disabilities, they will be sued. And so they have been.
The 11-12 state budget applies utilization controls to Certified Home Health Aide services in 24-hour split-shift and other “high intensity” cases. Essentially, Certified Home Health Care Agencies (CHHAs) will get reduced rates for hours of service provided above a certain level.
After the budget passed, several CHHAs in New York City began cutting service hours or terminating services entirely for people with significant disabilities, without advance notice and without evidence that the recipients’ needs had changed. As a result some of these people were held in hospitals instead of being discharged to their homes, and others were at risk of going to nursing facilities, because they had no other way to get needed assistance. Among these people were Ena Johnson and eight others.
Federal Medicaid law requires states to provide CHHA services to people who are eligible for nursing facilities, so they can remain in their homes. It also requires states to make the service available in sufficient quantities to meet medically justified needs, and prohibits states from arbitrarily reducing or eliminating services for individuals. States must ensure that recipients are notified of any plan to cut or end their services, and recipients can request a Fair Hearing to dispute such plans. People who request a Fair Hearing must continue to receive unchanged services until the hearing decision is issued; this is known as “Aid Continuing”.
Not only did some CHHA agencies not provide advance notice of service reductions (in one case, they told a worker who was in a recipient’s home providing overnight services to leave immediately), they refused to comply with orders from state authorities to provide Aid Continuing after recipients requested Fair Hearings.
When DOH and other officials were told about this, DOH Commissioner Nirav Shah sent a letter to CHHAs telling them to stop it. When they didn’t stop it, he sent another letter. As of April 20, they still hadn’t stopped it, and Shah had not taken further action. So Johnson and others filed a class action suit in US District Court, alleging violation of federal Medicaid law, the due process clause of the 14th. Amendment of the US Constitution, Section 504 of the federal Rehabilitation Act, and the Americans with Disabilities Act. The Court has not yet heard arguments in the case.
There are some things to argue about, but a couple of points are beyond dispute. First, the CHHA agencies are violating federal Medicaid law, and second, actions by a state government to reduce availability of relatively inexpensive homecare that result in people being in more expensive institutional facilities violate the ADA.
One interesting thing that may come from this case could be a federal court decision about what really can be done to stop violations of federal Medicaid law. CHHAs could be decertified by the state and no longer allowed to bill for services. DOH traditionally sees health providers as bosom buddies and is very reluctant to take punitive action against them. This is, no doubt, partly because some DOH staffers are former (and future) healthcare industry lobbyists. It gets even tougher when the violator is a county executive or health department director who has arbitrarily limited the type and availability of services that are supposed to be uniformly available statewide. Realistically, the state can’t cut off Medicaid funds to a county, and there doesn’t seem to be any provision for fining or firing non-compliant county officials. This case doesn’t concern county officials but it does include state officials other than Shah who oversee Medicaid service decision-making. So we’d like to see what the court comes up with.
Another interesting issue is the extent to which the state can make budgetary decisions that reduce the availability of Medicaid services. States do this all the time (including NY, which has never set Medicaid rates for dental services high enough to keep the services available, and has cut them again this year), and often are sued for it, but in many cases they lose in court but still don’t fix the problem. The situation cries out for a definitive federal court decision that applies truly painful sanctions to states that violate the law.
On the other hand, there is some dirty laundry here. The lawsuit details the support needs of 9 people. Although CHHA is intended to provide specialized medical services, most of what these people needed, and had been provided by CHHA aides, was basic attendant service—stuff like turning people over in bed at night to prevent bedsores and assisting them to dress or use the bathroom. NY has another Medicaid State Plan service that does this, called “Personal Care”, and it is much cheaper than CHHA, because its training and licensure requirements are less intense. All of the people in the complaint could have done just as well with a couple of hours of CHHA service daily and the rest handled by Personal Care aides. Why didn’t that happen?
Because for some reason, in New York City the CHHA agencies themselves are allowed to control what services are provided, and naturally they choose to provide the most expensive, highest-overhead service they can. NYC CHHA agencies also, inexplicably, decide how many hours of service to provide—that is, they do what upstate county governments do to assess need and authorize services—and so they can over-prescribe services. Some of these people probably don’t really need 24-hour service, though they certainly need some services, appropriately scheduled, to stay out of nursing facilities.
This almost entirely explains why total per capita Medicaid long-term-care spending is so much higher in NYC than in the rest of the state. It’s been a bone of contention for years. Governors propose to cut personal care (not CHHA) statewide each year, advocates tell them that instead of punishing the entire state, they need to get control of what goes on in NYC, and in the end, they do nothing at all. Until this year, when they tried to partially apply the correct solution.
The reason they got sued is because it’s not a full solution. States don’t have to use the Medicaid program, but if they do, they incur a legal obligation to meet people’s needs adequately, and budgeting must be done accordingly. DOH should have notified all providers as soon as the budget passed that no service changes can be made until every high-hours CHHA recipient’s needs had been planned for. Individuals’ needs should have been reassessed, not by CHHAs or DOH, but by third parties who would not gain or lose by the results. Then each person should have received a plan that provided adequate hours of CHHA service to meet truly intensive medical needs, and adequate personal care hours to meet support needs, and they should have had an opportunity to object and, perhaps, request a Fair Hearing with Aid Continuing. Only after plans were completed and appeals exhausted should anyone’s services have been changed.
Of course, that would have meant that DOH wouldn’t achieve cost savings as quickly as projected in the budget. Those projections and timetables are fantasy. Attempting to achieve them could be why Commissioner Shah, et. al., didn’t try very hard to stop this travesty from occurring, and why they so richly deserve to be sued.
This case concerned Disability Advocates, Inc.’s efforts, as a federal Protection and Advocacy for Developmental Disabilities (PADD) contractor, to obtain information about people housed in two OPWDD institutions who, they alleged, were being kept there instead of being released to more integrated settings, in violation of the ADA. We’ve covered this case in detail previously.
OPWDD refused to give information about some residents to DAI because, it claimed, family members, who constituted “legal representatives” under federal law governing PADD activities, wouldn’t permit it. DAI argued that family members aren’t legal representatives unless they are legally appointed guardians, and that the law gives PADD organizations authority to determine “probable cause” for wide-ranging investigations, including making blanket requests for records.
The case was argued in State Supreme Court, which ruled against DAI, so it appealed to NY’s highest court, the Court of Appeals. In March, the Poughkeepsie Journal reported that a 4-judge Court of Appeals panel had overturned the lower court decision and found in favor of DAI.
We haven’t been able to read the decision. However, the Journal indicated that the judges agreed with both of DAI’s contentions. It reported that the Court found that DAI “is entitled to review clinical and medical documents if attorneys ‘have probable cause to suspect abuse or neglect’ even without seeking the consent of family members who are not legal representatives”.
The Journal also reported that OPWDD had not decided whether to appeal to a federal court.
Miguel M. was a man with mental illness who had a “Kendra’s Law” court hearing for forced outpatient mental health treatment. “Kendra’s Law” provides that a person whose untreated mental illness endangers himself or others, and whose refusal to comply with treatment has been a factor in his being hospitalized for mental health treatment at least twice within three years, can be ordered by a court to undergo “assisted outpatient treatment” (AOT).
Dr. Charles Barron, on behalf of the NYC Dept. of Health and Mental Hygiene, applied for the AOT court order. In doing so, he requested Miguel’s medical records from the hospitals he had been sent to, without notifying Miguel beforehand. In court, Miguel objected to introduction of the records into evidence. They were introduced anyway and Miguel was ordered into AOT.
Miguel appealed, arguing that Barron violated the federal Health Insurance Portability and Accountability Act (HIPAA). HIPAA states that medical providers can not turn over a person’s medical records to anyone without the person’s consent, except under various circumstances.
Barron argued that NY public health law allows disclosure of medical records to health officials who need them to perform their duties, and that in any event, Miguel’s case met two of HIPAA’s exceptions. Those exceptions state that medical records can be disclosed if necessary for a public health “purpose of preventing or controlling disease, injury, or disability, including, but not limited to, the reporting of disease, injury, vital events such as birth or death, and the conduct of public health surveillance, public health investigations, and public health interventions,” or for “treatment”, defined as “the provision, coordination, or management of health care and related services by one or more health care providers, including the coordination or management of health care by a health care provider with a third party; consultation between health care providers relating to a patient; or the referral of a patient for health care from one health care provider to another.” Barron also argued that even if release of health records violated HIPAA, other courts have found, in criminal cases, that the records can still be used as evidence.
In May, the NY State Court of Appeals ruled against Barron, rejecting all of his arguments. First, HIPAA explicitly pre-empts state law unless it is more stringent; NY’s public health law is not. Second, the court felt that the “public health” exception in HIPAA was aimed at activities to protect public health in a collective sense, such as gathering and analyzing medical data to make decisions in an epidemic. The court said forced release of an individual’s medical records is a serious privacy violation and an individual’s case does not rise to the level of a “public health” issue. Third, HIPAA’s “treatment” exception is about cooperative sharing of information between providers, such as when a primary physician refers a patient to a specialist, and does not apply to a public official seeking evidence to use in an adversarial court proceeding. Finally, the court ruled that using illegally-obtained evidence in a criminal case is not the same thing as using it to force a person into treatment who has not been charged with a crime.
HIPAA says that a court can compel release of medical records, and the judge who wrote the opinion said Barron should simply have told Miguel he planned to ask a court to order release of the records and let him argue against it; the results would ultimately have been the same.
This is an interesting case but it doesn’t really weaken Kendra’s Law. It seems unlikely that a court hearing an AOT petition would not order release of relevant medical records over the objection of a person with mental illness; after all, the purpose of the law is to compel treatment of people who object to it.
On a purely common-sense reading of HIPAA, it also appears that the judge may have erred in disallowing the public health exception. The law states the exception can be invoked for the “purpose of preventing . injury, or disability, including, but not limited to . [a list of aggregate public health issues]”. It is reasonable to suppose that the phrase “not limited to” means just what it says, and that obtaining medical records for the purpose of keeping a person from harming himself or others is a clear example of preventing injury or disability.
That doesn’t mean that STIC supports Kendra’s Law. We don’t. The law was passed after an indigent mentally ill person who had repeatedly sought treatment, and been denied it, killed someone while in a delusional state. The legislative response should have been to mandate the provision of treatment, not the forced acceptance of it, but Kendra’s law does achieve the former, and therefore has been beneficial to some people. It also appears to be used in a racially biased manner, since the majority of people forced into AOT have been people of color. However, that may be an artifact of demographics: People of color are more likely to be indigent than white people, and indigent people have more risk factors for mental illness than people who are not impoverished. White people who are not poor are more likely to have insurance that covers mental health treatment and their illnesses are more likely to be detected by early screening.
At any rate, at press time, the City was considering whether to appeal.
As has been reported in the media, large numbers of veterans have been committing suicide, many of whom requested mental health services from the Veterans Administration but didn’t get them. Many were diagnosed with Post Traumatic Stress Disorder (PTSD) incurred in combat. The statistics are astounding: there are over 84,000 diagnosed veterans on waiting lists for mental health services. Every day, 18 veterans commit suicide; about a quarter of them are enrolled with the VA medical system. 1000 more make a suicide attempt each month.
This is a problem whose massive size is only beginning to be understood. The military historian John Keegan wrote in the mid-1970s that evidence suggests that every soldier not killed outright who is exposed to battle conditions long enough will eventually undergo psychological trauma. America’s “War on Terror” has kept many soldiers on the front lines for longer periods than any other war, and we can expect PTSD rates to skyrocket as a result. A “permanent war” may create a public mental health problem so profound as to be irremediable by any medical means.
It’s certainly clear that the Veterans’ Administration’s response has been inadequate. This is, in some ways, deliberate on Congress’s part. The US’s history of making vague, high-sounding promises to veterans and not keeping them is almost as long as its history of doing the same to Native Americans. As a result, Congress has specifically limited veterans’ ability to sue the VA.
But in 2007 two veterans’ organizations sued the VA in federal district court for failing to provide mental health services, and cash compensation for disability, in a timely fashion. The court rejected the suit, finding that federal law does not permit ordinary federal courts to consider veterans’ claims disputes. Instead, the law provides a special veterans’ court for the purpose, and its decisions may only be appealed to the District of Columbia Circuit Court of Appeals.
The vets appealed to the 9th. Circuit Court, whose 3-judge panel issued a decision in May overturning the lower court and sending the case back for more fact-finding. The decision urged the parties to reach a settlement, but also told the district court to hold hearings to determine what can be done to speed up both initial medical appointments (which in some cases, it was alleged, weren’t provided to suicidal veterans for 8 weeks or more) and the appeals process for cash compensation decisions (which can take up to 4 years).
This was a 2-1 decision. The majority opinion was remarkable for the impassioned tone of its introduction. The one-judge dissent was equally remarkable for its derisiveness of the majority.
Notably, the judges did not agree on basic findings of fact—something that circuit courts are not ordinarily even supposed to consider. The vets say that people seeking mental health services are frequently put on waiting lists for appointments by clerical staff without being assessed by medical personnel, and the court majority agreed with them. The dissent cited testimony from VA officials that anyone who goes to a VA medical clinic or calls one on the phone and indicates that s/he is suicidal or having other serious mental health issues will immediately see, or speak to, a nurse or doctor, who will decide if and when an appointment should be made.
The legal issues are pretty complex. We’ll try to boil them down here.
Both the district and appeals courts agreed that veterans can’t bring suit in ordinary federal court under federal law governing the VA. However, the vets argued that the situation in the VA is so bad that veterans are being denied due process of law under the Fifth Amendment of the US Constitution. Veterans’ health and compensation benefits are a legal entitlement and thus are considered “property” under a long tradition of federal jurisprudence. The Fifth Amendment says people can’t be denied “life, liberty or property” without due process of law. The veterans say that extreme delays in getting medical treatment or cash benefits deprive them of their property.
The majority and minority opinions both accept the possibility that the Fifth Amendment is being violated. However, the minority argued that a decision about that can’t be reached without first determining if the VA is violating applicable law or regulations governing its procedures, which the law won’t let ordinary federal courts do. Instead, veterans must take such issues to the special veterans’ court, which is empowered to consider constitutional issues, and if necessary, appeal to the DC Circuit. The majority argued that raising a constitutional issue bypasses the requirement for finding that the VA is violating law or regulation, and so any federal court can hear the case.
At that point the issue of responsiveness to suicidal veterans could come into play. However, as we noted, neither the parties to the case nor the circuit court judges agree on how bad that situation is. That 84,000-person waiting list includes people waiting for any type of mental health services; whether sizeable numbers of people with truly acute needs are on it is in dispute. The district court didn’t even consider it; it only got as far as deciding it didn’t have jurisdiction.
On the other hand, the VA, at trial, agreed there were long delays in its appeals process for cash benefits, and said it didn’t know why they occur. The Circuit Court speculated, from evidence provided, that there is a very high rate of errors made by VA staff at each stage of processing applications and appeals, causing paperwork to get shifted back down the chain for corrections.
The majority also argued, on the basis of precedent, that a suit on behalf of a group of veterans that alleges procedural problems at the VA (as opposed to suits contesting decisions regarding individual veterans’ benefits) can be heard in ordinary federal court. The dissenting judge verbally sneered at that; he said the majority misunderstood the precedent and that it actually says it is logically impossible to sue the VA regarding benefits without arguing that the VA has handled specific cases wrongly, whether that is done by presenting one case or statistics from several cases, and therefore ordinary federal courts have no jurisdiction in any such cases.
Meanwhile, a couple of other circuit courts have considered very similar cases and come up with differing views. The VA could request a hearing by the full 9th. Circuit. If they lose there, they can appeal to the US Supreme Court. The differing circuit court opinions make it likely that the Supremes would take the case, and it is by no means certain what the outcome would be. Veterans and people with mental health disabilities should not declare victory yet.
We may have to face the fact that the mounting mental health issues among veterans result from our insistence on smashing terrorist mosquitoes with a military sledgehammer, and the only way to solve it is to regain a sense of proportion about how to respond to an ongoing low-level threat.
State Budget: A Managed Disaster
The state budget passed on time this year. That’s because outlining a work of fiction is faster than writing a non-fiction book. The budget lacks detail because the Governor’s Spending and Government Efficiency (SAGE) Commission, whose job is to figure how to consolidate and streamline government agencies, had done nothing by April 1, and because the budget gives DOH authority to make any cuts needed to get the numbers to add up.
So we emphasize: What’s printed here is just the tip of the iceberg. The budget, as passed, only specifically describes a portion of cuts that must be made to achieve balance. There are still about half a billion dollars to be cut out of healthcare, even if all the time-sensitive projections in the budget are met, which is fantasy. Any measures proposed by Cuomo and his Medicaid Redesign Team (MRT) that were rejected by the legislature could be right back on the table when DOH starts looking at its spreadsheets. DOH also has authority to reduce rates paid for services without any form of review, and to ask the feds to rubber-stamp the elimination of “optional” Medicaid State Plan, or any Waiver, services without consulting the legislature.
Managed Care will be expanded. Many details about it aren’t clear, but the goal is eventually to force virtually everyone who uses any form of Medicaid into managed care. That includes almost everyone who is now “excluded” or “exempted” from it. DOH is supposed to follow a process to determine whether provider capacity exists to meet the needs of different groups of people with disabilities before mandatory enrollment begins for them, but we don’t know what the process is. The existence of a timetable for enrollment suggests DOH isn’t taking it very seriously.
All Medicaid recipients over age 21 who need more than 120 days of community-based long-term care services will be forced into “managed long-term care”. That includes people now using Medicaid Home and Community Based Waiver services—and that includes people served by OPWDD (see OPWDD & Managed Care: Brave New World or Been There Done That for more). It also includes people with mental illness, who will have a separate managed care system for “behavioral health services”.
Here’s the mandated enrollment timetable: “Restricted Recipients”: July 2011. “Personal Care” (broadly defined but not including CDPA): August 2011. Prescription drugs and various “exempt” groups: October 2011. “Dual-eligibles” aged 19 or over: April 2012. CDPA: 2012. OPWDD: After 2012.
There is also a plan for a pilot project to take advantage of the feds’ offer of a much larger Medicaid match for “medical homes”. A medical home is supposed to be a kinder, gentler, and more comprehensive form of managed care that is more like what we call “service coordination”.
Managed care exists to cut costs by cutting services, so none of this can be good. How bad it will get is unknown, because nobody yet knows how it will be done. A “Managed Long Term Care Workgroup” is being formed to work on it. Supposedly, unlike the MRT, consumers and advocates will get real representation in this group, but details on that are lacking also.
Homecare services will be cut. There are several types of homecare. All of them are supposed to be under managed care eventually, but in the meantime utilization limits will be imposed. For Certified Home Health Aides, reduced rates will be paid for service plans above a certain number of hours. This has already generated a lawsuit (see Courts Watch). Level 1 personal care (cooking and housekeeping services for people who can’t do those things) will be limited outright to 8 hours per week. That would also seem to be illegal, because federal Medicaid law requires service plans to be individually designed to address documented needs, and hours would naturally vary, but so far nobody has sued. No doubt, somebody will.
As a sop to health-worker unions, all agencies that provide homecare services in New York City and Westchester, Suffolk and Nassau counties have to comply with prevailing wage laws. How they will be able to do this without higher homecare rates is unclear.
There will be an alleged 2% across the board cut in Medicaid payments for 2011, 2012, and 2013. It’s alleged because in fact, some types of services are exempt from this cut and others will be cut by more than 2%. DOH must report the impact of the cut to the legislature within 30 days of the end of the fiscal year, but the legislature isn’t allowed to do anything about it.
There will be a Medicaid global spending cap; spending will not be allowed to increase by more than 4% per year. The Division of the Budget and DOH will review spending each month and cut rates and/or eliminate services to keep costs below the cap. DOH has to “seek legislative and stakeholder input in developing an allocation plan”, and must show the plan to the legislature at least 30 days before it takes effect, but again, the legislature can’t change the plan.
Prior authorization will be required for opiate prescriptions in excess of four prescriptions within 30 days. The Part D wrap-around for atypical anti-psychotics, anti-depressants, anti-retrovirals, and anti-rejection drugs for ordinary Medicare recipients is eliminated. Some limits have been imposed on specific treatments, therapies, and medical supplies or orthotics. And there’s a 5% across-the-board rate cut for the Early Intervention program.
These cuts are severely affecting STIC. So far we’ve dropped our Bridges to Health waiver program, laid off our Benefits Advisor, eliminated health insurance for personal attendants in the CDPA program, and cut hours for CDPA administrative staff. As DOH makes more cuts, more bad things will happen here.
The proposal to eliminate spousal refusal for community-based Medicaid services was dropped.
A proposed cap on medical malpractice awards was rejected.
The “provider prevails” provision for prescription drugs remains in fee-for-service Medicaid, but increasingly Medicaid drug coverage will be under managed care, where this does not apply. The “wrap-around” for people who are dually eligible for Medicaid and Medicare (typically very low-income people) to cover Medicare Part D premiums was restored, and EPIC will continue to assist eligible seniors to pay those premiums.
Funding for the largely useless, and sometimes worse than useless, NY Connects point-of-entry system was restored.
The proposal to require direct Medicaid billing (instead of billing through county health departments) for Early Intervention services for large providers was dropped. Direct billing gets you paid faster than billing through the county, so we don’t know why anybody objected to this. It didn’t apply to small providers that might not be able to afford the software.
Finally, we repeat, this is just the beginning. It seems impossible for the state to realize all of its projected savings as quickly as expected, and beyond that there is still $500 million to save, so more stuff is coming, and it’s going to hurt. Some of it will be illegal, and advocates need to prepare to go to court.
Pointless Posturing Proliferates
As promised, Congressional Republicans are trying to dismantle the Affordable Care Act (ACA; also known as “Obamacare”) by any means possible. They will not succeed in any real way, because they don’t have the votes in the Senate, and even if they did, Obama would veto anything drastic. Neither house has the votes to override a veto. Still, people are upset about it, so we’ll cover this briefly. There are three theoretically dangerous proposals.
House Budget Committee Chairman Paul Ryan (D-WI) proposed a deficit reduction plan that would privatize Medicare for people who are under age 55 by giving them vouchers to pay for private health insurance. The size of these vouchers would increase annually at the overall US inflation rate, which is several points lower than the current rate of inflation for health insurance. This could mean that as years passed, the vouchers would pay a shrinking portion of insurance premiums, and people would have to pay more out of their own pockets. Plan supporters say that Medicare is such a big chunk of the US medical economy that insurance companies would have to find ways to cut costs and reduce rates to match what people would be able to afford. Plan opponents say this process will result in the quality and quantity of coverage being reduced, and people would increasingly go without essential health services.
This plan is dead on arrival. It has no chance of passage in the Senate. Many Republicans were slammed by people in their districts for supporting it, and some of them have come out against it.
This is also part of Ryan’s plan. Medicaid is an on-demand system. State governments share costs with the feds, and are committed to provide a set of mandated (and, perhaps, some optional) services to all eligible people. Thus Medicaid costs increase not only due to inflation, but because in bad economic times, more people lose their jobs and health insurance and become eligible for Medicaid. Block grants would end the on-demand feature. Instead, each state would get a specific amount of Medicaid funds from the feds to spend each year, reportedly 35% less than current spending. States would allegedly get loosened eligibility rules and service mandates to help them cope with this. Block grants would theoretically be adjusted for inflation, but not automatically, which would make them vulnerable to cuts during the annual budget process. It would inevitably lead to fewer people being eligible for Medicaid and a reduction in service types, frequency and duration available to recipients.
This idea resurfaces every 10-15 years or so. The last time it got traction was during the Clinton Administration. When Clinton said he’d veto it, it was dropped. State Governors, especially Republicans, constantly call for more flexibility in Medicaid, but none of them wants the funds cut. This, also, would only pass the House, not the Senate, and would face a veto if it did.
Some states give people with incomes above the federal minimum access to some or all Medicaid services or special programs such as the Children’s Health Insurance Program (CHIP). NY does this with its Family Health Plus and Child Health Plus programs, the Medicaid Buy-In, and some Medicaid waivers. States that accepted the 2-year increased Medicaid match in the American Recovery and Reinvestment Act (the “federal stimulus bill”) were required to maintain these enhanced eligibility levels for adults for the duration of the enhanced match (it ends June 30, 2011). The ACA extends this maintenance of effort requirement. It now lasts to at least January 1, 2014 for nearly all programs (or until the state has the new ACA health insurance “exchanges” fully operational) and through September 30, 2019 for all children, whether in CHIP or other forms of Medicaid. There is an exception: maintenance of effort is not required for non-pregnant, nondisabled adults with incomes above 133% percent of the federal poverty level if states certify to the feds that they are facing a budget deficit for the current or next year. Beyond these dates, ACA actually increases Medicaid income eligibility thresholds, so whatever “effort” was not “maintained” must eventually be restored and surpassed.
There’s a bill in both houses of Congress to repeal these requirements. It is supported by many Governors, but has virtually zero support from Democrats and isn’t likely to gain much. Since it would effectively gut the near-term assumptions on which ACA is based, it’s also likely that Obama would veto it if passed.
In early May ADAPT stormed Washington to protest these issues. Over a hundred people were arrested when they occupied the Cannon House Office Building Rotunda and, later, Ryan’s office. They also issued a press release stating, “According to a recent Washington Post-ABC News poll, 69% of Americans oppose cutting Medicaid. These results are consistent with a 2010 Harris survey that found that 89% of Americans supported a tax increase to assure that people could receive services in their own homes, rather than being forced into nursing facilities or other institutions. The American Association of Retired Persons (AARP) polls repeatedly find that the vast majority of seniors want to age in their own homes with any needed services.” They also met with staff for all the members of the bipartisan “Gang of Six” senators who are supposedly trying to forge a compromise budget plan. Predictably, they were stonewalled by Ryan and got some respect and support from the Gang of Six.
Meanwhile, the federal Centers for Medicare and Medicaid Services (CMS) issued a proposed new rule that would make it harder for states to cut Medicaid rates. Before a state could cut rates paid to Medicaid providers, it would have to use a standard procedure to analyze how the change would affect access to services and submit the results to CMS for approval. States would also have to get public comment on proposed cuts before enacting them, and would have to monitor and report their effects. Since federal law requires that Medicaid-funded services must be as available statewide as the same services are to people with private medical insurance, and rates strongly affect availability, this could give CMS leverage to stop rate cuts. CMS must consider public comment on the rule before rolling it out. However, the only practical way to stop it would be for Congress to pass a law—which Obama would inevitably veto.
The upshot of all this is that New Yorkers certainly should tell their federal representatives how they feel about these ideas, but they probably shouldn’t worry too much about them. If you’ve got time and energy for advocacy, there are a lot more serious issues on the state level that need your attention right now.
Faint Restraint Complaints
Efforts continue to move forward on the issue of overuse of restraint and seclusion on children with disabilities in public schools.
The original federal bill that passed the House of Representatives last year, which did not contain provisions allowing use of these procedures when specified in an IEP that were added to the Senate version, was reintroduced in the House. So far there is no companion bill in the Senate. A new bill was also introduced in the NYS Assembly, with no Senate sponsor. Unless some well-publicized advocacy occurs on their behalf, neither of these bills is expected to go anywhere.
Meanwhile, the US Department of Education announced it would provide non-binding “guidance” to school districts on the issue before the next school year starts.
Adaptable design allows some features of a home to be changed to meet the needs of a person with a disability. Design elements such as wider doorways, hallways and barrier-free entrances are included as standard home features, while the home design is made to allow other features to be added as needed. To meet “adaptable” standards, it must be possible for changes to be made quickly without the use of skilled labor and without changing the overall structure of the home or its materials. Adaptable design allows the house or apartment to meet the specific needs of the user, while maintaining the appearance of the dwelling until more obvious accessible features are needed. For instance, bathroom walls may be designed with additional supports to allow for the installation of grab bars in the future. Cabinets under sinks can be designed to be removable, allowing the storage space to be provided until such time as the knee space is required by someone using a wheelchair. Similarly, closet rods and counter tops can be installed on adjustable glides, allowing them to be positioned for the needs of the user.
Universal design is an approach to the development of “products and environments that can be used effectively by all people, to the greatest extent possible, without the need for adaptation or specialized design” (North Carolina State University, 1997). Universal design addresses the need for access by creating designs usable by all people, whether or not they have disabilities.
This is accomplished by designing wider halls and doors, barrier-free entrances, elevated electrical outlets, lowered switches, adjustable closet rods and shelves, adjustable counters, touch switches etc, This type of design makes the home usable by all family members, and recognizes that a person’s abilities change over their lifetime. This approach leads to greater inclusion for many groups often neglected in the design process (e.g., children, the elderly, people of small stature, frail people, etc.)
Universal design equalizes the ways people use products and services. For example, the stairless bus has a low floor section so that anyone can enter the bus from a pedestrian pathway using a short ramp that is extended to the pavement. This design makes entering the bus easier for everyone. This bus also has a system that verbally announces the next stop and displays it on an electronic message board at the same time, ensuring communication of essential information to all riders.
There are six principles of Universal Design. (North Carolina State University, 1997)
- Equitable Use: The design is useful and marketable to people with diverse abilities.
- Flexibility in Use: The design accommodates a wide range of individual preferences and abilities.
- Simple and Intuitive Use: Use of the design is easy to understand, regardless of the user’s experience, knowledge, language skills, or current concentration level.
- Perceptible Information: The design communicates necessary information effectively to the user, regardless of ambient conditions or the user’s sensory abilities.
- Tolerance for Error: The design minimizes hazards and the adverse consequences of accidental or unintended actions.
- Size and Space for Approach and Use: Appropriate size and space is provided for approach, reach, manipulation, and use regardless of the user’s body size, posture, or mobility.
The Complicated Mental Health System
I have long believed that people who have mental health problems and end up in jail may not be getting their mental health needs met in the community. Finding out what works for a person can take a long time. It isn’t like getting stitches for a laceration or a cast for a broken bone. It can take time to figure out what is wrong and what works to help fix it.
At age sixteen I was hospitalized in a mental health facility that was operated by the state of Florida. The building I was taken to was several miles from a regular hospital. I was taken there by the police and it was very scary. I remember hours of questions and paperwork. The first night I slept on a mattress on the floor because the building was over-packed with patients. Eventually I got a bed in a shared room after some people were discharged. I saw a psychiatrist the day after I was admitted. He prescribed medication. My parents visited, brought some clothes and my driver education study materials to keep me busy.
While I was at this hospital, a young woman was brought to our ward from a juvenile justice site. She came in her jail jumpsuit. At the time I felt badly that she was there in those jail clothes. It set her apart. Some staff told the other patients that she belonged in jail, not a mental hospital. She slept in a seclusion room.
I was there for about a week. I weaned off the medications a few months after my hospital stay. The psychiatrist didn’t prescribe medication for the very nasty side effects. I would have stayed on my medications if I had been offered side-effect support.
I tried to attend college in Florida while working full time jobs. I moved to NY and continued working and seeking an education.
I couldn’t do both. My symptoms returned in my early twenties. I wanted to seek treatment near my family, so I went back to Florida. A psychologist referred me to various services, including vocational rehabilitation. The state voc rehab agency helped pay my medical bills because I was not receiving SSI or Medicaid. At the time I knew very little about community based support. A psychiatrist prescribed medicine, but it didn’t really help my symptoms. As my symptoms worsened, my voc rehab case was threatened. My life and goals went up and down.
I moved back to NY, applied for college, saw physicians here. My psychiatric symptoms continued to worsen and led to hospitalization at Binghamton General Hospital. I was transferred to Greater Binghamton Health Center (GBHC). Several medications were tried and my symptoms actually became worse. I was taken off the meds and began to improve some. When I left GBHC I wasn’t taking medications but I still had some moderate symptoms. While at GBHC I was diagnosed with Asperger’s; I am a person with a dual diagnosis. It was a relief to me to know because it helped me understand my past and who I am. It also helped my parents understand.
A group home setting was offered while I was at GBHC. It was a bridge back to the community. As an outpatient I still worked with a psychiatric nurse practitioner on trying to find the right medication combinations. I learned that stress is a very real trigger for my symptoms and that my brain chemistry needs help with side effects when I take certain medications. This process of searching for the right combination took months. Employment and education were placed on a back burner.
I was only at the group home for a few months and was able to move on to an apartment program. I have been receiving supportive services from local agencies. I am trying to get back into college and I have a minimum wage part time job. It is a balancing act to get supports and get on with my goals. It is a slow process and that is very frustrating. If I don’t go through this process, though, my independence and future may be at risk. I don’t want to end up hospitalized again. I have been working hard on making new friends.
We need more incentives to encourage future doctors to become psychiatrists. College loan forgiveness might be one way to do this. Our community does not have enough psychiatrists. It is good we have some nurse practitioners, but they are not enough.
joined STIC’s Dual Diagnosis Task Force because I feel strongly that people with dual diagnosis need to be able to get community based services. Unfortunately, many people with dual diagnosis end up in the local jail. While there are a psychiatrist and social workers there, if there were more people willing to work in the mental health field and the dollars spent at the jail were available in the community, I would expect that fewer people would end up in jail.
My Friend, Tom
Marie just called. She told me, sadly, that Tom has died. Pictures flash through my head and I find my breath is paused for a few moments. We all knew the infections would probably get him and now they have. Tom had ALS (amyotrophic lateral sclerosis) and although it had taken his muscles, his heart was strong. And his spirit and determination were even stronger.
Only a couple years ago, Joy Earthdancer came to my office and said, “I have a volunteer for you. There is this man who is living in Harpursville who uses CDPA and he’d like to do something to help us with systems advocacy. He can’t come down here to STIC, but he has experience, passion and time.” I told Joy I’d like to meet him and soon I was tooling up Route 88 to Harpursville to meet Tom and Marie.
Tom was the best advocate for home-based personal care I have ever met. He loved having visitors and welcomed everyone to his home. And his wonderful friend, Marie, helped him fight the disease and the infections, with a steadfast love and the caring attention he needed twenty four hours a day, every day.
Being a caregiver is more than bathing, suctioning, massaging painful muscles, etc. Being a caregiver meant helping a special doctor who would come to Tom’s home, meant making numerous calls to providers for nursing support, meant advocating with respiratory therapists, computer technicians, and equipment companies. Being a caregiver for Tom meant loving him and helping him live his life on his own terms. Marie is the best caregiver I have ever met.
Tom was patient with people but not with systems. He made a documentary about the Community Choice Act and shared it with legislators because he believed everyone, no matter how serious his or her disability, has a right to live in his or her own home, with the supports needed to live and survive. And in that spirit, he offered his face and story to STIC to use in the battle for freedom for other people who are trapped in institutions. Tom’s video convinced his Congressman to believe in and fight for the Community Choice Act.
He will be with us every time we speak to a governor, a senator, a congressman, an assembly-member, a commissioner or a director of a public health department, and tell them people who use ventilators, people who use feeding tubes, people who use eye scan computers to communicate want to be in their own homes, want to be touched daily by people who truly love them, and want to be respected as whole persons with dignity.
Tom was my friend and teacher. He was also very kind to my daughter. He was patient with her and he laughed with her. We will miss him very much.
Thursday, August 25 9:00 am to 2:00 pm
Call Diane Button at 724-2111 (voice/TTY) for an appointment
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OPEN TO THE PUBLIC!