AccessAbility

This year’s budget outlook seemed almost sunny compared to last year’s storm of cuts and “reforms”. The waters were quieted early in December when, under pressure from Occupy Wall Street, Governor Cuomo and the legislature agreed to a tax “reform” package. The deal kept much of the revenue that would have been lost if the state’s surcharge on incomes over $200,000 a year had been allowed to lapse, as Cuomo originally insisted on doing.

So in January, Cuomo announced that the state was facing a relatively mild $2 billion deficit for fiscal year 2012-13. His budget proposal covers $1.5 billion of that with tax loophole closures and enforcement measures, while making the usual false claim that they are not “tax increases”. Thus, with only $500 million to be cut, things looked relatively rosy for the disability community at press time.

People with disabilities got another pleasant shock when the Governor mentioned their civil rights in his State of the Union address. He said, “People with disabilities have a right to receive care in the most integrated setting ... [and NY State] will develop an Olmstead Implementation Plan that will guide the transition of individuals from institutional to community-based care, provide access to affordable and accessible housing, and promote employment of persons with disabilities.” He called NY’s present system for serving adults with disabilities “fiscally irresponsible and morally unacceptable.”

In a blog, Rochester Center for Disability Rights Executive Director Bruce Darling explained how truly remarkable this was. He said, “Unfortunately, much of what you see when it comes to disability rights issues isn’t pretty. Often, governmental bureaucrats and politicians oppose giving people with disabilities even their most basic rights. Many don’t even take the time to understand the issues and some actually twist facts to meet their own self-serving purposes.”

“None of the last three Governors had what it took to make such a statement,” Darling said. “First, generally folks in power tend not to pay any attention to the disability rights community. We don’t often get acknowledged in such speeches. .

Second, when folks in power do mention us, they often screw it up. Governor Cuomo didn’t do that. Honestly, it isn’t hard for folks who don’t understand disability politics and culture to make mistakes, and although there are some folks who might quibble with a word here or there in the Governor’s address, when you take his work as a whole, it was right on the mark.

Third, his message sets the stage for real change in NY. When you want to transform long term services and supports in a state, it certainly helps to have the Governor announce the direction. With today’s speech, there can be no question where the Cuomo administration stands ...”

There is evidence in the budget proposal that there may be real meat behind Cuomo’s disability rights rhetoric. However, some things in the budget will make it harder to achieve his stated goal

Counterproductive

The most serious is yet another attempt to eliminate “Spousal Refusal”.

Spousal refusal gets portrayed as a scam to let well-off people who can afford long-term care get away with having Medicaid pay for it instead. That’s a gross distortion of the facts. The reality is that in order to qualify for Medicaid, your income and assets must be at or below poverty level. Private insurance doesn’t cover ongoing long-term care. There is no cost-sharing system so you can pay a fair portion of the cost while Medicaid picks up the rest. You have to be so poor to qualify for Medicaid that you can’t afford any share, and you’ll also have trouble keeping food on the table and clothes on your back.

So for families where a spouse or child needs long-term care (the “sick” person), and the other spouse or the parents don’t (the “well” person), NY offers spousal refusal as a legal way to avoid forcing the family into poverty. The “well” person “refuses” to use his/her income to support the “sick” person, so the “sick” person can get Medicaid without the family’s assets being taken. One alternative to this is for the couple to get a divorce—which happens in states that don’t have spousal refusal.

Another alternative is to put the “sick” person in an institution, because while spousal refusal is optional for states and can be used for integrated services, the federal Medicaid “spousal impoverishment” rule is always available to people facing institutionalization.

As we keep saying, integrated individual services are 3 to 5 times less costly than segregated congregate facilities for people with the same needs; by now this fact is even accepted by some of the officials who want to eliminate spousal impoverishment. Plus, NY can recover the funds from the family’s estate after death. So what’s up with this?

It’s probably just one of those things that gets put into budgets purely to be removed later to show that the governor is willing to negotiate. But the disability community is willing to negotiate too. We’ve proposed capping the income/asset limits for spousal refusal at the federal level that applies to spousal impoverishment.

Another serious problem is that, yet again, there will be no cost-of-living-adjustment for integrated service providers. While it’s not surprising, it is harmful. Provider health benefit costs are growing much faster than the inflation rate, and it’s very hard to find and keep direct service staff when wages don’t keep pace with inflation. Cuomo says he’ll start a new program next year to provide increases “based on actual costs and outcomes”, but we don’t know what this means. Some rates, such as those for personal assistance services, are already based on actual costs, but the state has then cut those rates so they no longer cover actual costs.

The Access to Home program would be cut to $1 million (down from $4 million last year; first-year funding was $10 million). This is one of the few options that low-income people who aren’t eligible for Medicaid waivers have to pay for home modifications that keep them out of institutions. At $4 million the program only serves 20% of those eligible; do the math.

Problematic

Once again, Independent Living Centers (ILCs) like STIC were spared cuts to their operating funds administered through ACCES-VR (formerly VESID), under the State Education Department (SED). That’s good. But for several ILCs, this is a relatively small portion of their total budget, and many of their other funding sources have been cut over the years. Costs keep rising, so level funding won’t stop services from being cut or programs downsized.

People with disabilities were happy to see a clear statement that managed care, and “managed long term care”, plans will be required to offer Consumer Directed Personal Assistance (CDPA). Roll-out of CDPA is supposed to begin in September 2012, but no details are available. Advocates are very concerned that managed care operators don’t understand CDPA and won’t ensure that proper consumer direction principles are followed. One major managed care operator is already talking about requiring “task sheets”—that is, rigidly detailed job descriptions for workers that would take away consumers’ flexibility to control what workers do from day to day. Advocates are calling for an opportunity for ILCs that provide CDPA to train managed care administrators.

Cuomo wants to revamp preschool special education service funding. Counties and the state pay most of the costs, but services are allocated by school districts, and the Governor thinks money would be saved if districts had to pay a larger share. This may be true, but it would be achieved by cutting services. Services for very young children can reduce the lifelong severity of their disabilities, and cut lifelong service costs. On the other hand, Cuomo wants to make it harder to justify using “distant” providers (such as residential programs) when services are available close to home. He wants to prohibit “in most cases, children being evaluated by the same agency that provides the child educational services or by an evaluator with a less-than-arms-length relationship to the agency,” to eliminate conflicts of interest that might cause them to exaggerate needs. That’s a good idea, but to be fair, evaluators shouldn’t be employed by the county or SED either, to remove conflicts of interest that could lead them to downplay needs.

Everyone agrees that affordable housing is a key issue for people with disabilities. Most of them have very low incomes, and it’s hard to get people out of segregated settings when there are no real homes that they can afford. Cuomo’s Medicaid Redesign Task Force recognizes this, due to ILC advocacy. So does OMH, which is under two court orders to integrate people with mental health disabilities into “supported housing”. (Cuomo is still appealing one ruling, despite supporting Olmstead in his speech.) So the budget contains several housing items. Most, though, aren’t new. Instead, they continue to implement court orders and the 2005 New York City “NY-NY III” agreement. And most refer to “supported housing”, which means housing with support services available, and sometimes required in return for being housed. While some people do need such programs, most homeless people with disabilities (including those in institutions) don’t need bundled support services. They just need low-income, and in some cases physically accessible, housing. Advocates have tried for years to get officials to understand this, and the message may finally be getting through. Cuomo is asking for an additional $8 million for NY’s low-income housing tax credit program (an incentive for developers to build low-income housing) for each of the next five years. This is small potatoes, but it’s a start.

NY’s Early Intervention (EI) program, which serves very young children with disabilities, would be converted to managed care. EI evaluators and service providers would have to join managed care provider networks and negotiate rates with those networks’ operators, but would bill a statewide fiscal intermediary (FI). The single FI could make life easier for small providers who don’t have big bookkeeping departments. EI service coordinators would have to notify OPWDD if a child appeared to be eligible for that agency’s services. Cuomo claims this will ensure that more children are better served, and that may be true. However, managed care bean counters would be able to attend EI service planning meetings, where they could intimidate planners into minimizing needs and services. EI services, like preschool special ed., reduce lifetime service costs, so making them harder to get will cost more over time.

A couple of OPWDD proposals are raising eyebrows. As we’ve reported, OPWDD is working on a reform plan (see OPWDD People First Waiver: “Should&lrdquo; vs “Will”), and will fund pilot projects to learn how to use person-centered planning and managed care principles to assess needs and allocate services. Cuomo wants to let them award pilot grants without competitive bidding. OPWDD has a history of overly cozy relationships with providers of segregated programs (see OPWDD Scandals Hit Home). This looks like more of the same, and could limit the pilots to a very narrow range of models that don’t maximize consumer control or integration. Cuomo also wants to reorganize OPWDD into separate sets of regional offices to oversee state-operated and private providers. He gave no reason for this except “efficiency”. Advocates wondered if this will mean unequal quality standards and monitoring systems that will let the agency’s scandal-ridden segregated programs, which consistently violate Medicaid service and discharge planning regulations, keep doing business as usual while more restrictive oversight gets applied to not-for-profits that offer personalized integrated services.

Real Meat (with Some Gristle)

NY has a big problem with uneven administration of Medicaid by county governments. Federal law requires Medicaid services to be equally available statewide, but NY counties pay a share of NY’s Medicaid match, and so are allowed to control access to services. When they limit services to save money, they violate federal law, but there is no enforcement to bring them to heel. The share that counties pay has slowly shrunk over the past decade, but no one has tried to weaken their grip on services. Until now. Cuomo wants not only to further cut the county share, but also to completely phase out county administration of Medicaid over several years. If done right, this will end a load of service availability and coordination problems. This is, potentially, huge.

STIC has strongly criticized OPWDD, but to be fair, that agency’s flexibility and responsiveness in providing individualized services is far ahead of OMH.

OMH, in theory, offers individualized supports and services, but in practice its state-and-county-operated and not-for-profit providers are very rigid. OMH has a few big psychiatric centers; runs or funds group “homes” that provide little more than 3 hots and a cot, plus medications; and funds “supported living”, which usually means you get a brief visit at home by a worker once or twice a day. If you have serious mental health issues but aren’t in one of those programs, you’re most likely on the street or in jail. On your way to being homeless or incarcerated you might see an “intensive case manager” (OMH has a funny definition of “intensive”; it means once or twice a month), or the staff of a “crisis center”, who will try to minimize your needs and send you away as quickly as possible. If you need one-on-one attention, or frequent monitoring or supervision, good luck trying to convince any of these providers to change their routines for you.

So advocates were very pleased to see Governor Cuomo’s proposals to create more responsive services, including mobile rehabilitation and crisis teams, “first break” programs to assist families when a child manifests mental health problems, and suicide prevention programs.

Along with this are proposals to transfer funds from segregated congregate day programs and sheltered workshops to more integrated supports, including supported employment, and to close the Kingsborough Psychiatric Center. Closing psych centers is a good thing, but advocates would prefer that the funds saved be used to provide integrated services in the communities where those centers were, rather than to transfer the inmates to an institution somewhere else.

Cuomo wants to let OPWDD, OMH, OASAS and DOH waive regulations that interfere with coordinating services for people with dual diagnoses, and accept each others’ approved providers in order to make services available more quickly. This is mostly intended to support the state’s “health home” pilots, but may also help dually-diagnosed people generally—IF these agencies take it seriously, which is not a given. The British have a term, “jobsworth”, which is what they call an official who is too timid or lazy to think outside the box: “Oh no, guv, trying that would be more than my job’s worth.” There are a lot of jobsworths in the OPWDD and OMH systems.

Finally, some of the specific Medicaid coverage exclusions in last year’s budget were removed or eased. Under the new budget, podiatry visits for adults with diabetes, certified lactation consultant services for pregnant and postpartum women, harm reduction counseling and services for people with substance abuse, care coordination and integration services for people with hepatitis C, and enteral formula for people with HIV/AIDS will be covered.

OPWDD abuse and mistreatment of the people in its care was still in the news this winter, including a story from STIC’s service area.

The Valley Ridge Center for Intensive Treatment is an institution in Norwich that is run by Broome Developmental Services (BDS). In December the NYS Inspector General (IS) and the NYS Commission on Quality Care for People with Disabilities (CQC) released a joint report on disturbing incidents that occurred there. The report shows that abuse and neglect have been common in the facility, and usually unreported.

These events occurred well before the incoming Cuomo Administration sacked the top leaders of OPWDD and CQC and replaced them with people who are making reforms. In fact, the IS and CQC launched their investigation in March 2011, just days after OPWDD’s new Commissioner, Courtney Burke, started her job, and it was she who called them in.

Valley Ridge is a “Center for Intensive Treatment”, a highly restrictive, locked-down type of institution that OPWDD claims it needs to handle people with developmental disabilities who have dangerous criminal behaviors. OPWDD also says the facilities provide more intensive “treatment” than its developmental centers and ICFs do.

But in 2010 a Poughkeepsie Journal Freedom of Information request forced OPWDD to admit that only 20% of the approximately 1000 people in such facilities across the state had been involved with the criminal justice system, that 12% were there purely for the “crime” of trying to leave facilities that they didn’t like, and the rest were either people who, in someone’s opinion, might do something dangerous, or people with severe multiple disabilities who had been institutionalized for decades and had never done anything harmful. Even the IS and CQC, which uncritically accept OPWDD’s assessments of Valley Ridge residents, say only that “most” of them meet behavioral criteria for an Intensive Treatment unit. Observers, including STIC staff and former OPWDD officials, have said that these places do not provide “treatment” that differs in amount, frequency, type or duration from that provided in ordinary developmental centers.

The report says there were 148 substantiated cases of abuse or neglect between August 1, 2007 and July 31, 2011 at Valley Ridge, which has a capacity of only 60 residents, and that nearly 20% of the facility’s direct-care staff was on administrative leave while being investigated for abuse or neglect in March 2011.

In one of the two incidents investigated, in August 2009 a worker grabbed a violent resident by the neck and hair and repeatedly slammed his head into a wall. This was witnessed by two other workers, who didn’t report it as required. Another worker had secretly made audio recordings of several staff members talking about abusing residents; one of those recordings was of the first worker bragging, in very profane language, about how he had abused the resident. About a year later OPWDD officials got the recordings and began investigating. It turned out that several Valley Ridge workers knew about that incident, and others, but had reported none of them. The worker who made the recordings told OPWDD that Valley Ridge supervisors knew that the first worker had been treating the resident “roughly”. The abusive worker resigned after being confronted with the recording in February 2011. One of the witnesses had already been fired for an unrelated matter, and the other witness was fired for failing to report the incident. Other staffers who had failed to report incidents were placed on administrative leave. In October 2010 OPWDD gave the recordings to the state police, who did nothing. In August 2011, the Inspector General referred the incident to the Chenango County District Attorney, who also did nothing.

The second incident, from March 2011, is harder to understand. A resident was subjected to daily photographing of his sexual organs by staff for nearly a week, after complaining of bruising and swelling in his groin and scrotum. The injury probably happened when the man, while shoveling snow, used his lower belly and groin to push the shovel (there is no dispute over the cause of the injury). The resident had sustained several bruises for unknown reasons in previous months, so the Treatment Team Leader, apparently under orders from an unnamed “Valley Ridge official”, told the nursing staff to photograph the injury daily, for “investigative, not medical, purposes”. OPWDD has a protocol for photographing injuries frequently for the first day or two, but the photos continued for 6 days, during which the facility doctor repeatedly complained that they were unnecessary and demeaning. The resident also eventually complained, and his social worker told his mother about it. She then demanded that the photos and body checks be stopped.

The situation was muddled, but three things are clear. First, things had happened to this resident for months that should have been reported but weren’t. Second, an incident report on the groin injury should have been filed immediately, and various officials, and the mother, should have been notified within 24 hours. Third, it seems that a personality conflict between the doctor and the Valley Ridge administrator caused a “turf war” over the incident. Nurses and the resident’s social worker supported the doctor, while higher-level administrators and the OPWDD Central Office, which eventually investigated, supported the Valley Ridge official. The report said the issue could have been handled better if staff had communicated directly and promptly with each other.

The IS and CQC investigation uncovered several disturbing trends at the facility.

It is likely that serious incidents of abuse and neglect are underreported by staff who witness them. In the four-year period mentioned in the report, there were 754 allegations of abuse or neglect at Valley Ridge. Almost 19% of these were substantiated, but only 2% were filed by employees who witnessed the incidents. Yet almost every worker interviewed by IS staff said they would certainly “report abuse if they observed it” and that they “were not intimidated by other employees from reporting.”

The report also shows that “zero-tolerance” policies regarding alleged abuse are unworkable. The high ratio of reported to substantiated incidents resulted, to a large degree, from a rule that even the most clearly false claims, made by residents who have a history of lying, must be documented and investigated. For example, a staffer filed an incident report which resulted in workers being placed on administrative leave after a resident made an obviously false claim that he had been raped by several workers in a busy common area of the facility. Others allegedly claim abuse because they are angry at “having to brush their teeth”.

When people are put on administrative leave for frivolous complaints or minor incidents, sometimes for weeks, it creates a serious labor shortage, making it much more likely that bad things will happen in a setting that contains a lot of potentially violent people.

On the other hand, in OPWDD’s “institutional culture”, physical force is a way of life. Residents have a theoretical right to refuse to go places they don’t want to go or do things they don’t want to do, but as a practical matter the staff are expected to make them go to those places and do those things on a rigid schedule, and are reprimanded if they don’t. The agency doesn’t take residents’ rights as seriously as it takes its own day-to-day routines. So people who don’t want to brush their teeth may be physically forced to do so, and sometimes injuries result.

The truth lies somewhere in the middle. Bad things happen that don’t get reported, some bad things that get reported don’t result in disciplinary action, and some false claims are made. Some facility staff said they could do a better job of separating fact from fiction if residents were more thoroughly assessed, and could respond better to their behavior if they had better behavior plans.

Or, they could drug them into submission, something that appears to happen quite often in large institutions and group “homes” alike, according to the New York Times.

On December 22, the Times reported that both state-operated and not-for-profit programs that administer segregated congregate facilities, ranging from developmental centers to small group “homes”, often use psychotropic medications to control the behavior of residents.

One woman said that her sister, after moving into a state-run group “home”, suddenly started drooling, gaining weight, getting pimples, and pulling her hair out. These turned out to all be side effects of overuse of Clonidine and other drugs. She’d signed a consent form for a reasonable dose of Clonidine to be given, but someone had altered the form, tripling the dose, without telling her.

In another case, an immigrant from Iran, who spoke mostly “Persian” ([sic]; the actual language is Farsi), had variously been diagnosed with “autism-related disorders, mild mental retardation, post-traumatic stress, bipolar disorder and schizophrenia” over several years. While in a group “home” in the Finger Lakes region, she had tremors, chest pains, rapid heartbeat, temperature fluctuations, and tardive dyskinisia. She was being given up to 2 1/4 times what the Food and Drug Administration and most practitioners consider to be the maximum dose of Geodon, an antipsychotic, daily, by an Easter Seals clinic. Easter Seals claimed the dosage was “not uncommon.” The Times obtained records that showed that “state officials” didn’t really know what her diagnosis was, because nobody could speak her language.

People are often given multiple medications without clear medical reasons, and sometimes relatively low-level staff are allowed to increase the dose if a person seems hard to handle.

The Times reported, “At an institution in Broome County, inspectors reviewing the records of several patients could not even figure out what behavioral problems were being treated with drugs like Depakote, lithium, Thorazine and Zoloft.” The paper found that people with developmental disabilities in residential facilities in NY are more likely to be given Ativan than multivitamins.

However, the extent of this problem, like the availability of personalized integrated services, varies by region. People in the Capital District region were much more likely to be overmedicated than those in the Central New York region, the Times reported.

Psychiatrists and psychologists told the Times that best practice for people with developmental disabilities who have behavioral issues is to use individual behavioral “therapy”, not drugs.

The Times also reported that people with developmental disabilities are statistically more likely to also have mental illnesses than the general population. This may be big news for OPWDD and OMH, both of which still employ, or fund the practices of, psychiatrists and psychologists who believe that people with developmental disabilities “can’t have” mental illness.

The lesson to be drawn from all this is that segregated congregate facilities are “people mills” that routinely mistreat people, sometimes due to the malice of psychopathic employees, but at least as often simply out of the financial and organizational imperatives that govern them. It will never end in these places. All of them have to be closed, and the people living there have to live in real homes with real personalized services provided by people who are either chosen and supervised by them, or by multiple agencies that routinely check up on each other.

Meanwhile, the revelations of financial corruption continued.

Also in December, the NY Times reported on shenanigans involving OPWDD’s oversight of the Federation of Multicultural Programs of Brooklyn, a not-for-profit agency that runs group “homes” and ICFs. Like the Young Adult Institute, the Federation had used Medicaid funds for inappropriate or illegal purposes, such as huge annual performance bonuses for the chief executive, no-interest loans to employees, and trips to Puerto Rico. Like the Executive Director of Academy Green Residences, Inc., top officials of the Federation stole funds. But unlike those agencies (see AccessAbility Fall 2011), the Federation also went through bankruptcy twice, hired two crooked Executive Directors in a row, and repeatedly failed to correct serious problems in its facilities, including unreported incidents of abuse, over a period of several years, while continuing to get what the Times called “collaborative” support and assistance from OPWDD.

The Times reporter claimed that the problem has roots in the Willowbrook scandal of the early 1970s, during which OPWDD faced extreme pressure to move people out of that notorious facility into group “homes”, and bent over backwards to help not-for-profits, often run by parents of people with developmental disabilities, to develop the residences rapidly. These relationships became much too cozy over the years.

The reporter also noted that it’s hard to shut down an operation like this because it owns so much taxpayer-funded real estate, housing people who would have to go somewhere else. This is one reason why other states have evolved systems that use generic housing with services brought in as needed, instead of specially-built facilities owned and operated by providers.

OPWDD, under Commissioner Burke, has been taking steps to get its oversight priorities straight in recent months. In June the agency placed the Federation on its “Early Alert” list of agencies in danger of being closed down. And this past fall, for the first time ever, OPWDD fined four providers for egregious improprieties. Those who have seen Burke in action up close have reported that she seems to be growing into the job. She appears to be increasingly intolerant of underlings who are dragging their feet on reorienting the agency to focus on real community integration.

In January, the federal Department of Health and Human Services (HHS) released an audit report on NY’s Office of Advocate and Commission on Quality of Care for People with Disabilities (CQC). The report echoed concerns of advocates expressed over many years, including: CQC is not an independent oversight body, because it reports to the Governor just like OPWDD, OMH and OASAS, the agencies it is supposed to monitor; it doesn’t even have the power to make its own hiring decisions. HHS noted that similar agencies in most other states are not-for-profit organizations, not part of state government. CQC doesn’t track the data it collects or use it to establish a strategy for gaining systemic improvements. HHS also cited CQC for violating several federal laws, including refusing to turn over documents on how it spends its money. The report was based on an inspection conducted 4 months after new CQC Chairperson Roger Bearden took over. HHS officials said they think the agency is already doing the right things to correct the problems, and Bearden said the report was “valuable”. Public hearings on the CQC’s future were held in February; at press time we had no information on how they went.

Following a recommendation of Clarence Sundram, the Governor’s “Special Advisor on Vulnerable Persons”, a new centralized 24-hour hotline will be set up for reporting allegations of abuse and neglect of children, people with developmental disabilities, senior citizens, and others. This appears to be an effort to coordinate, rather than merge, several “hotline” programs already in existence, which have been criticized for refusing to accept certain reports from certain people. It remains to be seen whether this will improve that situation.

Meanwhile, Governor Cuomo issued an Executive Order that will require state-funded service providers to cap executive pay at $199,000 a year. It will also require providers to use at least 75% of state dollars or state-authorized funding that they get for operating expenses to provide direct services. This figure will gradually be increased to 85%. No STIC program uses less than 85% of such funds for direct services; some use 90% or more.

OPWDD is moving forward, slowly, with its “People First” 1115 Medicaid waiver application to the feds. In December they issued a detailed Request for Information, which sought input from experienced providers, people with developmental disabilities, and their families, on several big questions about how the new system should work. STIC provided a very detailed response.

This article summarizes what OPWDD has said publicly about the waiver, along with what we have told them so far. We’ve broken it down by the questions being raised, with our vision of how things should work, followed by what OPWDD has said, or not said. OPWDD has already said they will not do some of the things we think they should do, so we’ve already got trouble.

A Note on “Consumer Control”: When we say consumers should have control “to the extent possible”, here is what we mean: Minor children, of course, can’t have the final say, but any input they can offer should be considered respectfully, and be given more weight over time. It is, after all, their life. Adults who are not legally incompetent must have complete control when their wishes can be understood. If someone thinks this isn’t practical, they need to take it to a judge; personal opinions about people’s capabilities are not acceptable reasons to limit their civil rights. OPWDD has huge incentives in terms of convenience and legal liability to assume that people can’t make their own decisions. Those incentives must be counterbalanced by disinterested authority. Yes, some people “in the system” have no friends or relatives who can be their guardians. That does not justify failing to get a determination of their abilities from outside “the system”, in a legal proceeding that regards a finding of incompetence as a last resort, before taking control away from them. As for people who cannot clearly communicate: Sometimes they are deaf but not diagnosed and can learn sign language. We can also learn a lot about what people want and don’t want through close observation. And in the rare case where a person’s preferences really can’t be known at all, we should assume that they are like most other people in desiring to live in ordinary homes, have ordinary jobs, be around people who don’t obviously annoy them, and spend most of their time doing things that don’t obviously upset them.

How it should work: Non-medical support services, and acute medical services, should be separated. There is a fundamental philosophical divide between them. Medical services are top-down prescriptive; they are “ordered” by doctors and delivered according to rigid practices by highly trained professionals. Support services should be bottom-up: the people served should be viewed as customers and provider organizations should lose money if the customers aren’t satisfied; services and supports should vary flexibly; and the people providing them should be supervised by the customer to the extent possible, and not required to have training or skills that aren’t needed for the specific work to be done. There is no organization in NY right now that has the combined expertise necessary to manage acute medical services while also ensuring effective personalization, consumer direction and integration for people with disabilities.

What OPWDD says: Acute medical and non-medical services will be combined, and allocated by the same managed care entities, though probably not right away.

How it should work: A single monthly regional per-person rate should be established to provide non-medical support services to all of the people with developmental disabilities in a defined region. The rate should be based on the known characteristics of the people in that region. So individual needs assessments are important, but should not be used to set individual rates. Why? Because that reduces the power of managed care to create incentives for providers to use less expensive integrated personalized services. If a person can be assessed as “needing” 24/7 support in a segregated congregate facility, and providers can get an individual rate that will cover that cost, then they have no reason to offer cheaper integrated options. The managed care agencies (DISCOs) should get separate contractual funding to do outreach to build up service capacity and monitor service quality; if that funding isn’t separate, they will likely cut corners on those things.

What OPWDD says: Individual monthly rates, to cover both medical and non-medical services, will be determined by individual needs assessments. OPWDD has not said how this will be done; it has asked providers for suggestions. (The CSS program does something like this but OPWDD is not saying it will be done the same way.) OPWDD has not said whether DISCO capacity development and quality monitoring will be paid for separately, and has provided no information about the amounts of money that might be available either for services or DISCO operations.

How it should work: Both needs assessment and service planning should be part of a single person-centered process. “Person-centered” means:

1. The person controls who participates and does not participate to the extent possible.
   
   
2. Needs are defined in terms of the person’s interests and what s/he can and cannot do, not as a type of program or setting s/he should be in. For example, instead of saying a person “needs Supervised IRA”, his/her residential needs would be defined something like: “Independently chooses activities such as watching TV, talking to friends on the phone, using the computer, working out on the treadmill. Travels by bus independently for regular trips; needs assistance to plan unusual trips. Works part-time 9:00 am to 1:00 pm Monday through Thursday. Attends church regularly and visits friends often. Regularly cooks simple meals. Needs reminders to turn off the stove, get up on time, and take medication. Walks somewhat slowly.”
   
   
3. Services must always be in the most integrated settings that meet the needs. In the example above, the person’s residential needs could be met by having someone in the home from mid-afternoon to morning most days, and at other times on days when s/he doesn’t work. The most integrated setting would be a two-bedroom house or apartment near a bus stop, with phone and internet service, and include a live-in companion (who gets free rent in return for being there at night and helping out with reminders) plus a few hours of help from a paid personal attendant each week.
   
   
4. Needs to be addressed are chosen by the person to the extent possible. The only thing that always comes first is respect for the person’s civil and human rights. Everything else, including “health and safety” plans, must respond to his/her preferences. People must not be forced to accept things they don’t want in order to get supports and services they need to stay alive.
   
   
5. Services and supports are individually tailored to the person, always. Even if s/he chooses a segregated congregate setting, that setting must personalize the services so that his/her freedom of movement, and choices of activities and of whom to associate with, are maximized.

The planning process should be facilitated by an independent person who is not employed by OPWDD or by any organization that provides, or would be expected to provide, services to the person. That will keep financial and “turf” issues from influencing the process. All services, including residential supports, should be governed by this process. Every person served by OPWDD should undergo such a process as soon as possible.

What OPWDD says: OPWDD says it want to do “real person-centered planning” for everyone, but hasn’t defined what “real person-centered planning” means. They’ve asked for suggestions. They’ve chosen the InterRAI Integrated Assessment Suite as the new needs assessment tool. This is the same tool being adapted by DOH for its Uniform Assessment System. Its Intellectual Disability component will be adapted via “case studies” conducted with agencies that OPWDD thinks have “high quality practices”. The tool is used in Michigan, which has a good person-centered developmental disability service system. OPWDD will phase this tool in “over the next several years” for “people newly entering the service system”, and come up with a plan to use it for “reassessing” people already in the system. The reassessment will be “phased in over many years” and “will be carefully implemented to ensure that people’s needs remain fully supported.” They don’t define “several” or “many” years, but their estimated timetable, announced in 2011, for completing the reform process is 5 to 10 years.

How it should work: The activities of the separate state agencies that serve people with different disabilities (OPWDD, OMH, OASAS, DOH, OCFS, ACCES-VR, CBVH, and the county agencies funded by them) should be closely monitored and directed by a central authority. This authority must have power to do whatever is needed to keep conflicting eligibility requirements, operating rules, or “turf wars” from preventing people with multiple disabilities from getting what they need, in the most integrated settings, in a timely manner. That authority must include ordering state agency heads to change specific regulations and procedures or to discipline or remove uncooperative employees.

What OPWDD says: OPWDD has said outright that it can’t coordinate the activities of other state agencies. It says DISCOs will be responsible for coordinating services provided or funded by those agencies on the local level, something that service coordinators have tried to do for many years, but failed, because they have no authority to force agencies to cooperate. DISCOs won’t have that authority either, but still will be judged on “cross-systems care coordination”. Governor Cuomo’s budget proposal includes authorization for some of these agencies to waive regulations and centralize some procedures as needed to improve coordination of services, but does not say if or how agency heads would be held accountable for doing so effectively. Cuomo also wants to phase out local county administration of Medicaid services over some number of years. ACCES-VR is under the State Education Department, which is not subject to Cuomo’s control; a law is needed to make ACCES-VR coordinate activities with the other state agencies.

How it should work: People’s services should not change at least until their next scheduled full service plan review. At that time, a fully person-centered needs assessment and planning process, as described above, should be done, and a new plan developed. Organizations that provide direct services to a person should not be allowed to facilitate their plans or coordinate their services. This is needed to keep agencies from steering people only to their own programs or covering up abuse. Within those limits, the person should be able to freely choose, to the extent possible, the organizations or people who facilitate the planning, coordinate their services, and provide services to them, from a list of all of the services available from all of the service providers in their region. That should include being able to work with people who are already in their lives. People should sign a form that shows the choices offered and made, to prove that their right to choose was respected. It may be that the person’s real, self-expressed needs and wishes are different from what has been assumed by a system that did not previously respect those things or their civil rights, and so their services may change.

What OPWDD says: It will be a few years before anyone gets a new service plan under the new waiver. The changes will be phased in slowly, at first for people new to the system, and later for those already being served. The “DISCOs”, the agencies that “manage” people’s “care”, will be responsible for ensuring that needs are assessed, person-centered planning is done, and services are coordinated and provided. DISCOs must be current not-for-profit OPWDD service providers that provide a variety of services. All existing provider agencies will be able to contract with DISCOs to provide services under the new system. OPWDD has asked for suggestions on how to ensure that people have a full choice of services and service providers. DISCOs will be “piloted” (tested) before they are used by everyone. In at least some pilots, DISCOs will be allowed to coordinate and provide direct services for the same person. “Care” (including, eventually, acute medical care) will be planned and “coordinated”, not “services”. It looks like DISCOs could do planning and coordination themselves or subcontract with others to do it. DISCOs will have a financial incentive to minimize service costs because they will have to pay for everything out of a single rate. The names of some services may change, without changing what they actually are.

How it should work: DISCO and service provider quality should be measured on the same criteria as much as possible. The things that should be measured, in order of importance, are: Consumer satisfaction; achievement of consumers’ preferred outcomes (such as employment, home of their own, etc.); use of the most integrated settings; extent to which the person has meaningful interaction with nondisabled people who aren’t paid to serve him/her; person-centeredness.

What OPWDD says: For service providers, the most important measures of quality are health and safety, and fiscal recordkeeping. The extent of consumers’ contact with nondisabled people is a third, less important measure, but OPWDD does not say that these nondisabled people can’t be paid staff. OPWDD speaks about outcomes and consumer satisfaction in general terms but these things are not part of the formal evaluation system that they have proposed. OPWDD has not defined quality measures for DISCOs in any detail but says that person-centeredness would be important. They have asked providers for suggestions on DISCO quality measures.

OPWDD says it will issue a summary of what it learned from the Request for Information in March. Applications for DISCO pilot projects won’t be issued until the feds approve the 1115 waiver application—expected later this year.

OPWDD, and at least some other state officials, now say that the OPWDD managed care system will remain completely separate from NY’s other managed care operations, because OPWDD has “special expertise” in developmental disabilities. We have mixed feelings about this. On one hand, we don’t really believe that the expertise required to assist people with developmental disabilities is so different from what people with psychiatric disabilities, severe brain injuries, Alzheimer’s disease, and other disabling conditions need that separate systems are justified, especially when one system—OPWDD—gets a lot more money than the others. On the other hand, there is plenty of worrisome disruption ahead for people on both sides of the aisle already, without introducing more chaos by trying to unify everything all at once.

We’ll have more to report in June. In the meantime, you can keep track of OPWDD’s public waiver activities in a couple of ways:

Each DDSO has a Waiver Discussion Board that includes people with disabilities and their families, and a People First Waiver Liaison whom you can contact to find out about the board and other information. Ours is:

Monika Deskur
Monika.Deskur@opwdd.ny.gov
(607) 770-0327

You can find the Liaisons for other DDSOs, watch videos of OPWDD Commissioner Courtney Burke explaining several different waiver concepts, and get other waiver information, at:

www.opwdd.ny.gov/2011_waiver/index.jsp

US law says corporations are “people”, with the same civil rights as human beings. The 2010 US Supreme Court Citizens United ruling gave corporations free speech rights. It equated money with speech to ensure that rich corporations will always be able to buy elections.

This is why:

• A majority of citizens favor single-payer health care but we can’t get it.
• A majority of citizens favor strong anti-pollution laws but we can’t get them.
• 60% - 70% of citizens, including super-rich investor Warren Buffett, say taxes should be raised on rich people and corporations to pay our debts but we can’t get that done.
• 69% of Americans oppose cutting Medicaid but it’s on the chopping block anyway.
• 89% of Americans in a 2010 poll favored raising taxes to ensure that people with disabilities can live in their own homes instead of segregated facilities, but we can’t get Congress to act.
• The “Tea Party” is mostly funded by rich corporations, corporate executives, and corporate lobbyists like Fox News, the Koch Brothers, and the US Chamber of Commerce; they want to deregulate corporations and cut taxes for the rich and they are duping good-hearted people into supporting them.

We must face facts. The REAL people of the United States, including people with disabilities, will never get what they want from government until corporate power is broken.

WHAT CAN YOU DO?

Join the movement to amend the US Constitution to end civil rights for corporations:

http://movetoamend.org/node/2325

Take back our government from a small minority of far-right-wing anti-tax fanatics and corporate shills:

http://rebuildthedream.com/

Boycott products made by the Koch Brothers: Angel Soft(R) Brawny(R) Coronet(R) Dixie(R) Mardi Gras(R) MD Bathroom Tissue Quilted Northern(R) Soft ‘n Gentle(R) Sparkle(R) Vanity Fair(R) Zee(R)

In July 2011, the federal Department of Justice sent a “findings letter” to NC charging that the state’s excessive use of adult “homes” for people with mental health disabilities violated the ADA’s Title II prohibition against discrimination against people with disabilities by state governments, as defined by the Supreme Court’s Olmstead decision. NC, like other states, acknowledges that adult “homes” are not the best places for people with mental illnesses and aren’t integrated, but refused to make supported living available to all who could benefit on grounds that the state can’t afford it, even though it is much less expensive than adult “homes”.

Of interest to New Yorkers, the letter cited the DAI v Paterson federal court ruling that ordered OMH to move some 4,500 people with mental illness from adult “homes” to supported living, to back up its legal arguments. The letter describes adult “home” practices that are also common in OPWDD-operated-or-funded group “homes” as “institutional”, including group “van rides”, providing little or no choice in meals or meal times, and restricting freedom of movement.

The letter is also interesting because NC state law requires provision of “community-based services when such services are appropriate, unopposed by the affected individuals, and can be reasonably accommodated within available resources and taking into account the needs of other persons for mental health, developmental disabilities, and substance abuse services,” language almost identical to that of the Olmstead decision. DOJ’s action means it’s not enough for a state to enact integration-friendly language into law; it must also actually carry out real integration.

Last fall we reported that Virginia had received a “findings letter” from DOJ for failing to ensure that people with developmental disabilities received services in the most integrated settings. In January, DOJ and VA signed a settlement agreement, avoiding a federal lawsuit.

Like other recent DOJ settlements and federal court orders, the agreement requires VA to close all but one of its large “training centers” (like NY’s developmental centers) over several years, and increase availability of HCBS Medicaid waiver slots to serve the people being released in more integrated settings. As in the Georgia case that we reported on, VA can’t automatically exclude “forensic cases” from discharge to more integrated settings, and the default option for people leaving training centers must be their family homes or personalized homes of their own, with segregated facilities, including group “homes” with 5 or more residents, being a last resort.

There are also some new twists.

Like OPWDD, VA has a pattern of violating federal Medicaid discharge planning regulations. The agreement contains detailed requirements that restate those regulations. It says, “Discharge planning shall be based on the presumption that, with sufficient supports and services, all individuals (including individuals with complex behavioral and/or medical needs) can live in an integrated setting.” It states, “Individuals in Training Centers shall participate in their treatment and discharge planning to the maximum extent practicable, regardless of whether they have authorized representatives.” The agreement requires everyone in a training center to have a person-centered discharge plan, and all of the person’s activities must be aimed at getting them out. There are also extensive requirements to continuously train center staff about integrated supports and teach them to practice “person centered thinking”.

If a person wants to stay in a training center, or wants to move to a segregated congregate group “home” (or if their families or guardians want it, which is more often the case), the state is not allowed simply to accept this at face value. Instead, the “barriers” to placement in a more integrated setting must be documented, and several steps must be taken to address them so the person ends up in an integrated setting if at all possible.

The agreement requires the state to develop community-based mobile crisis response systems to address behavioral, mental health, or family crises involving people with developmental disabilities, that will eventually have a response time of one hour. Residential “crisis stabilization programs” are also mandated, but these programs “shall be used as a last resort,” and “shall have no more than six beds and lengths of stay shall not exceed 30 days.”

The agreement states that case managers for people coming out of training centers can’t provide, or supervise those who provide, direct services to them. However, it’s not clear if that applies to case management organizations as a whole, or only to individual case managers.

Like the Colbert v Quinn settlement (see below), the agreement requires VA to provide dedicated housing subsidies to enable people with developmental disabilities to live in integrated personalized settings. The settlement also requires VA to beef up supported employment.

This class-action suit in IL was settled in federal district court. It requires the state to assist people in nursing facilities to move into more integrated settings, including their own homes, with only the supports they need. It is notable because it requires the state not only to increase the availability of typical “home and community-based” supports and services such as personal attendants and home modifications, but also to provide housing subsidies to ensure that those eligible don’t pay more than 30% of their income for rent. The subsidies must be continued by IL until federal subsidies or vouchers, such as Section 8, (always in short supply) become available.


Last fall we also reported that DOJ had issued a “findings letter” to New Hampshire in April 2011, criticizing its reliance on segregated congregate facilities for people with mental illness. DOJ ordered NH to provide scattered-site supported housing services, with housing not contingent on acceptance of any services. Negotiations followed, but in January US Assistant Attorney General Thomas Perez said NH’s plans were inadequate, prompting a defensive response by the state’s Attorney General. At press time it was unknown whether DOJ would sue.

However, people with mental health disabilities already have. On February 9, with the assistance of the Bazelon Center for Mental Health Law, Lynn E and five other people with mental illness, some of whom live in the state’s one psychiatric hospital or in a large nursing facility, and others who have been in and out of such places repeatedly due to substandard community supports, filed a class-action suit against NH Governor Lynch and various administrators. They allege that the state has chosen to maintain expensive segregated congregate facilities instead of closing them and using the funds to beef up integrated supports, such as mobile crisis units, Assertive Community Treatment (ACT) teams, and supported housing, which are known to be more effective, and less expensive, than segregated facilities. The state itself has acknowledged that its mental health system is “failing” and “broken”, a fact cited both by DOJ’s letter and Lynn E.

NH’s failure to provide adequate community supports echoes NY’s failure to do so (see The Budget: Cuomo Talks a Home Run but Hits a Double).

This federal class action suit pits Paula Lane and others against Oregon Governor John Kitzhaber and subordinates over whether keeping people in sheltered workshops violates the ADA and the federal Rehabilitation Act. Some advocates have suggested that this will be “sheltered work’s Olmstead case”. To date we are unaware of any other federal lawsuit addressing this issue.

The case, like many others, alleges that a state government has explicitly admitted that integrated services are less expensive and more effective than segregated congregate facilities, yet the state refuses to prioritize integrated services and closure of segregated programs. NY has done the same; OPWDD, OMH, and ACCES-VR (formerly VESID) all have said that the state relies too much on segregation and should provide integrated personalized services on a greater scale, but have so far failed to back up those words with deeds.

OR (like OPWDD) has an “Employment First” policy, but doesn’t take effective action to move people from workshops to supported employment. OR once had a nationally-recognized program to close workshops and provide integrated jobs for people with the most significant disabilities, but plaintiffs allege that starting in the mid-1990s, the state “reversed course”, with the number of people in workshops increasing and those in supported employment declining. This is similar to a recent trend in NY, where ACCES-VR has cut referrals to supported employment, and is both referring more people for “direct placement” (where those with few needs succeed while those with greater needs don’t get ongoing support and fail—though usually after ACCES-VR has claimed a successful “closed case”), and deeming more applicants “unemployable”. Those labeled unemployable end up in workshops or day programs, or on waiting lists for them.

The plaintiffs point out that people in workshops are surrounded by others with disabilities, with the only nondisabled people being supervisory staff. The plaintiffs say this violates Title II of the ADA and the Olmstead decision, which found that segregation, defined in part as failure to enable people with disabilities to interact with nondisabled peers as much as possible, is illegal discrimination. Thus this lawsuit challenges the position of NY’s Commission for the Blind and Visually Handicapped that workshops are “integrated” because they contain nondisabled staff.

The plaintiffs also argue that segregation in workshops injures people with disabilities psychologically and functionally, by reducing their self-esteem and causing their skills to deteriorate. It’s important for lawsuits like this to demonstrate that segregation is actively harmful, in order to counter claims that it’s acceptable for family members and guardians to choose to segregate people who could benefit from integrated services.

More information has emerged from DOH on when people will be required to enroll in Medicaid Managed Care:

• Conversion of Consumer Directed Personal Assistance (CDPA) services for non-dually-eligible people (people who have Medicaid but not Medicare) to managed care has been pushed back from July 2012 to September 2012.
• Dual-eligibles will be phased into managed long-term care beginning in December 2013. STIC’s service area would not be affected until at least June 2014 (possibly later if there are no available providers at that time).
• People on the NHTD and TBI Medicaid waivers will begin to be enrolled in managed long term care in 2015.
• People currently on OPWDD’s HCBS waiver will be transitioned into the new People First Waiver over time. Those who use CDPA will eventually have to get it through a separate managed long-term care provider, and the date for that is unknown also. People served by OPWDD may also be eligible for “health home” services, and OPWDD says they will be able to choose whether to receive care management from a “health home” or a People First DISCO.

by(Abridged, from NYAIL)

The New York Association on Independent Living (NYAIL) is dedicated to removing barriers to full community integration and safeguarding the civil rights of people with disabilities of all ages. NYAIL represents Independent Living Centers (ILCs) and the people with disabilities they serve.

We applaud Governor Cuomo’s recent historic commitment to develop an Olmstead Implementation Plan (see The Budget: Cuomo Talks a Home Run but Hits a Double). NYAIL and ILCs, in collaboration with ADAPT, are working to ensure that NY effectively implements the Community First Choice Option under federal health reform. Governor Cuomo last year committed to the CFC option and we look forward to appointment of a Development & Implementation Council soon. CFC will lead to a dramatically changed service system, in which people are served based on their functional needs, not their diagnoses, and in which community-based services are the first choice, instead of institutions. The transformative power of CFC can serve as the cornerstone of the state’s Olmstead plan.

To accomplish these goals, NYAIL responds to the Executive Budget and proposes reinvestment of Medicaid savings, as described below:

2012 BUDGET PRIORITIES

• Invest in funding ILCs, essential community-based advocacy and service organizations that serve as the safety net to ensure that people with disabilities get services and supports to live independently in their communities. Savings from reducing Medicaid costs for institutional care should be reinvested in ILCs, the organizations that have done the most to reduce use of institutions.
  
  ACCES-VR data show that ILCs’ transition and diversion of people with disabilities from costly institutional placements saved NY over $1 billion since 2001. These activities save NY more than $9 in institutionalization costs for every state dollar invested in ILCs. As NY moves to implement the Olmstead decision, ILCs are well-placed to assist by helping people with disabilities get services and supports to be independent and fully integrated in their communities.
  
  NYAIL is grateful for Governor Cuomo’s budget proposal to level-fund ILCs. Despite flat funding levels, the demand for ILC services has increased dramatically over the past decade. ILCs served 59,730 people with disabilities, family members, and others in 1999/2000. In 2009/2010, ILCs served 83,306 people, a nearly 30% increase in just 10 years. As NY continues to implement major systemic reforms to the state’s Medicaid system that drastically change the way health care is delivered to New Yorkers with disabilities, this number will continue to increase. NY should reinvest Medicaid savings in ILCs.
  
  

• NYAIL urges the Legislature to support implementing the Community First Choice Option in federal health reform, to which the State has committed. CFC will let the State draw down an additional 6% Medicaid share for services provided under the option. CFC should be the centerpiece of an aggressive Olmstead implementation strategy to ensure the right of people with disabilities to be served in the most integrated setting appropriate to their needs.

• NYAIL strongly supports the requirement that managed care and managed long-term care plans offer the Consumer Directed Personal Assistance (CDPA) program to their enrollees , allowing all consumers the option to independently recruit, hire, train, and supervise their own personal assistants. As this requirement is implemented, we expect the existing CDPA model (see regulations in 18 NYCRR 505.28) to be preserved. As in that model, the Fiscal Intermediary must remain separate and distinct from assessment and authorizing functions. And, all protections now available through the fair hearing process must be preserved in all aspects of Medicaid managed care and managed long term care.
  
  
• NYAIL strongly supports a funded initiative for education, outreach and enrollment assistance for people with disabilities and older New Yorkers in need of long-term care services. As NY restructures the Medicaid program and implements mandatory managed long-term care, assistance to people with disabilities and seniors to navigate the health and long-term care system, enroll in coverage, and know their rights is essential.
  
  
• NYAIL opposes the proposal to prohibit a spouse or parent from refusing to financially support their child or spouse so that person can get Medicaid. Eliminating “spousal refusal” doesn’t hurt wealthy New Yorkers; it hurts low-income couples who cannot live on the Medicaid levels and low-income parents with a young child with significant disabilities (see The Budget: Cuomo Talks a Home Run but Hits a Double).
  
  
• The budget proposes expanding Medicaid coverage for podiatry visits for adults with diabetes; lactation services to pregnant and postpartum women; harm reduction supports and counseling for people with substance abuse; and enteral formula for people with HIV-related illnesses. NYAIL supports the expansion of benefits, but the system should strive to be equitable and fair, basing eligibility for these services on need, not diagnosis. We urge NY to reevaluate the limitations on benefits based on the recommendations of the Basic Benefit Review work group and to expand access to services equitably.
  
  
• NYAIL supports the proposed requirement that certain pharmacies provide translation or other language services to individuals with limited English proficiency.
  
  
• NYAIL supports increased data collection to measure health disparities. The budget implements and expands the data collection standards required by the Affordable Care Act, by including detailed reporting on race and ethnicity, gender identity, disability items, and housing status. And it provides $1 million in state, and $1 million in federal funds for data analysis and research to promote programs and policies to better identify, understand, and address health disparities.
  
  
• NYAIL supports the proposal to improve language access by amending Medicaid rates for hospitals, diagnostic and treatment centers, and health centers to pay for interpretation services for patients with limited English proficiency and communication services for people who are deaf or hard of hearing.
  
  
• NYAIL supports an increase in funding of $500,000 to the Office of Temporary and Disability Assistance to provide resources for the state’s transition to mandatory enrollment in managed long-term care. Access to the existing fair hearing process must be ensured for all, and ongoing training for Administrative Law Judges is necessary to maintain an effective process.
  
  
• NYAIL supports the implementation of a Health Benefit Exchange. NYAIL commends the Governor for including language implementing the Health Benefit Exchange in the budget. The Exchange will help individuals, families and small businesses get more affordable and better health insurance. It will bring the cost of insurance on the individual market down by 66% and small business insurance costs down by 22%. As the state moves forward, NYAIL urges that:
  
  
  1. The Exchange should integrate private commercial and public coverage and be capable of assessing individuals for all possible Medicaid eligibility categories so that people with disabilities have equal access to the Medicaid program . For people with disabilities, who need comprehensive coverage, it is particularly important that the Exchange be able to do a thorough evaluation of eligibility that includes disability-related Medicaid, such as Medicaid Buy-In and spend-down provisions. Under current law, the state must not deny or terminate Medicaid based on income, without exploring all possible avenues of eligibility. The Exchange must be able to recognize the need for coverage that will adequately serve people with disabilities.
     
     
  2. The Exchange’s governing board should be free from conflicts of interest, have strong consumer representation, and be subject to open meetings law . No Board member should receive any financial remuneration from a health insurer, agent or broker, a healthcare provider, facility or clinic. There should be strong consumer representation, meetings should be open to the public, and meeting minutes should be made public.

2012 LEGISLATIVE PRIORITIES

NYAIL’s legislative priorities support Olmstead implementation by addressing barriers to community living and ensuring individual rights. We urge the Legislature to support the following priorities:

• Make discrimination by landlords based on a tenant’s source of income illegal under State Human Rights Law. S.83 (Squadron)
  
  Landlords often reject tenants with rental subsidies, such as Section 8 and subsidies tied to the Nursing Facility Transition and Diversion and Traumatic Brain Injury Medicaid Waivers. Many people with disabilities rely on subsidies and other assistance programs to live independently in the community. Discrimination based on source of income is illegal in New York City. The legislature should make source of income discrimination illegal throughout NY State.
  
  
• Incorporate inclusive design features in new residential housing that receives financial assistance for construction from federal, state, county or local governments.
  
  Most existing housing stock was not built to meet the needs of people with disabilities, including disabilities acquired as one ages. Housing built with inclusive design features would meet the needs of people throughout the lifespan and allow homes to be visitable to friends and family members with disabilities. Renovation of new homes is much more expensive than including accessibility features at the start, when the home is constructed.

• Incorporate ADA Title II into NYS Human Rights Law. A.71 (Paulin) and S.2407 (Marcellino)
  
  The ADA and Section 504 of the Rehabilitation Act of 1973 each provide comprehensive protection for the civil rights of people with disabilities under federal law. Under the 1999 US Supreme Court Olmstead decision, people with disabilities are entitled to receive the services and supports they need to live in the community and avoid unwanted placement in nursing facilities and other institutions. ADA Title II provides protections against discrimination on the basis of disability in services provided by public entities, including state and local governments. The bill to incorporate Title II into state law was passed by the legislature in the 2009 and 2010 sessions, but vetoed by Governor Paterson. This bill would clarify the scope of protections against discrimination by public entities in the provision of services, programs and activities. Public entities would be required to make reasonable accommodations and individuals with disabilities would gain critical access to administrative enforcement through the State Division of Human Rights. To date, more than 30 other states have incorporated Title II into State law, and none have reported any increased costs as a result .

• Amend State Social Services Law Section 384-b to eliminate subdivisions (4)(c) and (6)(a-e), which permit termination of parental rights on the basis of “mental illness or mental retardation”. S. 3026 (Huntley)
  
  Parents with psychiatric or intellectual disabilities risk loss of custody or termination of parental rights due to a long-standing bias in state law. Since 1976, State Social Services Law has included as grounds for terminating parental rights, inability “by reason of mental illness or mental retardation, to provide proper and adequate care.” of a child. These disability-related grounds for termination promote the discriminatory belief that such parents are unable to care for their children and creates a presumption that they are unfit. Child safety is adequately protected by other parts of the law that allow termination based on parental behavior rather than disability.

• Include the history of people with disabilities as required curriculum in all elementary and secondary schools. A.8466 (Cusick) and S.2352 (Grisanti)
  
  In order to fully integrate people with disabilities into the community, the attitudes of our society toward people with disabilities need to change. Education on civil rights of people with disabilities is the foundation for ensuring these rights are protected and attitudes changed. This bill would promote greater awareness and understanding of people with disabilities.

• Establish a small business tax credit for hiring people with disabilities. S.4107 (Addabbo) and A.8385 (Cusick)
  
  `The poverty rate for people with disabilities in NY State is 17% higher than for nondisabled New Yorkers. Working-age people with disabilities in NY have a 34.5% employment rate, resulting in an employment gap between people with and without disabilities of 40.9% (Disability Matters, CIDNY, 2011). A tax credit would provide an incentive for small businesses to hire people with disabilities, increasing their opportunities to achieve self sufficiency.

• Cap paratransit fare levels no higher than the base fares for transportation of non-disabled adults using the public transit system. S. 1225 (Duane) and A. 737 (Kellner)
  
  Require transportation providers, such as taxis and limousines, to buy accessible vehicles. ADA Title II prohibits discrimination against people with disabilities in the public provision of transportation services. Limited availability of accessible transportation is a major barrier for people with disabilities across NY, often leading to unemployment, inability to access medical care or polling places, and isolation from friends, family, and full community participation. Many people with disabilities rely heavily on paratransit; however public transit budget woes have led to an increase in fares. The paratransit bill would cap paratransit fares, because fares for people with disabilities higher than those for nondisabled citizens are discriminatory. Increased availability of accessible transportation will result in considerable Medicaid savings, as the cost for ambulettes to transport wheelchair users to medical appointments will decrease significantly.

by Linda Giese

I was listening to public radio on February 8 when Terri Gross interviewed Donald Hall, former poet laureate of the US, now 83 years old. He talked about old age, which “remains an unknown, unanticipated galaxy ... People’s response to our separateness can be callous, can be good-hearted, and is always condescending.”

To illustrate, he recounted a senior moment. Not one in which he forgot something, but one in which a younger person forgot something, namely, that Donald Hall is an adult. Hall said he had recently been in Washington to receive the National Medal of Arts and had gone with a friend to visit one of the city’s large art galleries. Because he cannot stand for long periods of time, his friend Linda pushed him around the gallery in a wheelchair.

Later, Hall and his friend had lunch in the gallery cafeteria. After leaving the cafeteria, a guard asked his friend if she had had a nice lunch. The guard then bent down and, with “an idiot grin” asked Hall, “Did we have a nice din-din?” Both Hall and his companion were too stunned to speak.

Hall attributed the guard’s behavior to his advanced age, but I think it’s likely that the wheelchair played a part. If Hall had walked out of the restaurant, the guard would probably have been more respectful. Despite the best efforts of physicist Stephen Hawking to prove otherwise, there is still an assumption that, if your body doesn’t work, neither does your mind. If someone has to bend down to speak to you, you must be a child. If someone has to push you, you must be incompetent.

In the 15 years I have used a wheelchair, I’ve never had this precise experience, but then, I am normally alone and driving myself when I go out - and I’m only 65. I have, however, had an experience of “they don’t see you, they only see the chair:”

I was eating lunch in a downtown Binghamton restaurant, when I heard a woman’s voice calling insistently “Mike . . . Mike.” I looked to my left, and there was the woman standing right by my side. “Are you Mike _____ ?” she wanted to know.

“No, I’m not,” I replied, too stunned to think of anything else to say.

“He has the same wheelchair that you do,” she said, by way of explaining her mistake.

She was right; I knew Mike and had seen him in this restaurant from time to time. He did indeed have an identical chair. He also had thick black hair, a mustache, and beard, while I was (and still am) a woman with light brown hair, wearing a skirt. She assured me sympathetically that she would pray for me, and left.

She was only standing one foot away from me, but she couldn’t see that I was a woman. She could see that I was sitting in a Quickie P-200 power chair. What do you say? On one hand, you really want to talk to the person, point out their error and discuss how their assumptions and prejudices are affecting their behavior. On the other hand, you are at a loss for words, even if you are a poet laureate.

Linda Giese is a member of the Board of Directors of STIC.