The state of New York is once again facing a multi-billion dollar budget deficit.
Governor-Elect Andrew Cuomo has said the state spends too much money on homecare and he is promising to cut Medicaid.
OPWDD believes it is justified in locking people up in segregated congregate facilities large and small and spending 17% of all federal Medicaid dollars allocated for developmental disabilities services to serve just 6% of those eligible for them. OPWDD officials are confidently seeking an increase in the rate they get to keep people in institutions that they refuse to close because they fund the rest of the system.
NY’s Department of Health has launched a pilot program to help nursing facility operators keep their institutions in business by converting them to “assisted living programs”: segregated, congregate facilities with fewer services and safety rules than traditional nursing “homes”.
Meanwhile, programs across the nation have proven that integrated individualized residential support services are only one-third to one-fifth as expensive as segregated facilities for people with the same kinds of needs. Eleven states have closed all of their institutions for people with developmental disabilities. Many states run state-of-the-art programs that provide individual integrated supports to people with all types of disabilities for less than one fourth of what NY spends per person.
The federal Centers for Medicare and Medicaid Services (CMS) have told Medicaid authorities in every state, including NY, about these cost savings. CMS has also offered extensive technical assistance and grant funding to help our state end its institutional bias and create a service system that makes individual integrated supports the rule and segregation the rare exception.
The US Department of Justice (DOJ) has confirmed that using budget shortfalls as an excuse to cut low-cost integrated individualized services while preserving more expensive segregated programs is illegal under the Americans with Disabilities Act and the US Supreme Court’s Olmstead ruling. DOJ has demanded, in lawsuits filed and settlements reached across the nation, that states act quickly and systematically to close institutions and other segregated programs and transfer the people they serve and the funds that pay for them to individual integrated supports.
New York’s officials, elected and appointed, have been aware of these facts for a very long time. Therefore, the disability community is serving notice on New York’s leaders:
You WILL NOT balance the budget on the backs of people with disabilities seeking to live in freedom in their own homes in our communities.
You CANNOT reduce the availability of homecare for people with disabilities by even one service hour as long as you spend more money to keep people in segregated congregate facilities.
You MUST adopt definite plans to close these facilities and transfer funds to individual integrated supports.
FAILURE TO COMPLY IS
A VIOLATION OF FEDERAL LAW.
THE AUTHORITIES WILL
Lawless behavior will be stopped.
There will be NO compromises.
YOU WILL BE SUED
AND YOU WILL LOSE.
EDITOR: KEN DIBBLE
LAYOUT: JESSE BISHOP
135 East Frederick St.
Binghamton, NY 13904
News & ANALYSIS
OPWDD Tap Dances Under Scrutiny
This fall the Poughkeepsie Journal continued to publish articles on OPWDD’s excessive use of segregated institutional facilities and its efforts to justify overcharging Medicaid for them.
The Journal obtained documents submitted to the federal Centers for Medicare and Medicaid Services (CMS) that address CMS’s questions regarding OPWDD’s rate-setting methodology and actual costs.
The documents point out that CMS has approved OPWDD’s methods in the past, which include a so-called “incentive for deinstitutionalization” that lets the agency keep two-thirds of the funds it gets to keep a person in a large institution every time it moves such a person to a less-restrictive setting, even though the cost of that setting is lower by 75% or more. OPWDD shows no awareness that “deinstitutionalization” is supposed to be a finite process that ends when all institutions are emptied and closed; officials instead insisted that it is legitimate to keep funneling people into and out of institutions in order to get more “incentive” funding.
The “incentive” payments no longer encourage institutional closures; they have become a reason to keep them open indefinitely. OPWDD has a “plan” to close all of its “developmental centers” while insisting that it will keep about 1,100 people moving into and out of similar programs in the same locations forever. At current rates, this will bring in over $1.8 billion annually, while the actual cost of keeping people in those facilities will be about $450 million each year. Beyond closure of one facility scheduled for 2011, the “plan” contains no definite inmate movement schedules or closure timetables.
OPWDD says that much of the extra money is used to fund its “community-based” programs, and is justified by the alleged high quality of those programs. There are several flaws in this claim though.
First, most of what OPWDD calls “community based” consists of smaller segregated congregate residential and day facilities whose participants have little or no involvement with the actual community.
Second, OPWDD gets approximately 17% of all federal Medicaid funds used for developmental disability programs and services but serves only 6% of the people who have those disabilities nationwide. Many of the rest of those people live in states with no institutions at all and whose integrated individualized community support systems, operating at rates of pay that are 75% or more below what New York gets, are regarded as state-of-the-art among experts in the field.
Third, OPWDD has played fast and loose with the facts concerning its “forensic units”, including “Regional ” and “Local Intensive Treatment” units, which are locked areas on the same campuses that house “ developmental centers”. The agency’s officials claim that these are “transitional” facilities that provide an alleged elevated level of training and supports to people who have been convicted of crimes or judged not guilty by reason of mental defect. On being pressured to prove these claims via Freedom of Information requests, OPWDD eventually provided documentation that only 10% of people in these facilities have been convicted and another 10% judged not guilty due to mental defect. As the Journal reported this summer, many people in the facilities have never been in the community where they could do something dangerous, and some of them have multiple disabilities severe enough to preclude them from ever doing such things. 12% of them are there only because they have tried to leave facilities on their own in the past; that is, they are locked up purely because they don’t want to be locked up.
Not even lobbyists for people who run state developmental disability agencies think OPWDD’s insistence on segregating people is “high quality”. As the Journal reported, “‘The problem is you get a lot of people with challenging behaviors in one place and it’s just a magnifying effect,’ said Charles Moseley, associate executive director of the National Association of State Directors of Developmental Disabilities Services, who oversaw closure of Vermont’s lone institution. ‘It really doesn’t offer the kind of options for people to rejoin the community.’”
According to the Journal, “Previously, ex-perts believed that special units were best for people with severely acting-out behaviors, said Richard Hemp, a researcher on developmental disability trends for the University of Colorado. But ‘compelling research’ has since shown that when people were placed in normal community settings, he said, ‘bad behaviors left.’ ‘In many ways, it’s the congregation of folks that causes the problems,’ he said.”
Furthermore, there is no “intensive treatment” going on in these facilities. As STIC staff have observed at Broome Developmental Center, there is no significant difference between the services, or lack thereof, that people on the LIT get and those received by other people in the facility. As the Journal reported in September, “Lee Cannon, director of the Wassaic [developmental center] for two years until 1997, is troubled by the possibility, as he put it, that such units have ‘no backdoor.’ ‘There’s no definition of what “intensive” is and there’s no definition of “treatment,”’ he said. ‘If treatment is only being in an intensive treatment unit, that’s really not treatment. That’s really a form of incarceration.’”
And as legal advocates for people with developmental disabilities (see Courts Watch), and STIC staff, have seen, there are no “transitions” of people out of these facilities unless the agency is forced to make them, and often they are made by dumping people on the street with no supports.
Fourth, OPWDD deliberately spends money on senseless “capital improvements” in order to get more Medicaid reimbursements from the feds. Over the years it has undertaken several multi-million dollar projects, including spending almost $10 million at Broome Developmental Center since 2006, to repair or remodel large facilities that house tiny numbers of people. These expenditures enable NY to draw down federal Medicaid matching funds, most of which would not be needed at all if the facilities were closed.
Both CMS and the NYS Medicaid Inspector General are continuing to investigate OP-WDD’s rate-setting and institutionalization policies. Both say they are months away from releasing results. Advocates were concerned that CMS in particular, which has been complicit in approving practices that it only began investigating following a newspaper expose, would eventually clear NY of wrongdoing as a way of protecting itself. Meanwhile, OPWDD has indicated that it plans to seek a rate increase from CMS for the coming year.
Ill Bill Killed?
In October Governor Paterson vetoed a controversial bill that would have changed state law regarding private medical insurance for people with autism.
The bill would have required insurance companies to cover only treatments that are “evidence-based, peer-reviewed and clinically proven”. This standard, especially the “clinically proven” part, is not required by NY insurance law for any other types of treatments or populations. There are many viable treatments that are effective for small subgroups of people with autism, but there is no scientific consensus that any treatments meet this standard. So the bill would not actually have required insurance companies to provide coverage for any autism-specific service or treatment, and might have allowed them to drop coverage they do provide.
The bill also would have ordered state agencies, including OPWDD and OMH, to create a list of treatments and services for which coverage would allegedly be required. This provision was also unprecedented in NYS insurance law. OPWDD in particular has a very narrow view of what treatments are appropriate for people with autism, and in any case, such a list would still have been subject to the “clinically proven” loophole.
The bill was written by Manatt Health Solutions, an insurance industry lobbying firm, although its principal sponsors, Senator Neil Breslin and Assemblymember Joseph Morelle, falsely claimed that it was not. Virtually all organizations concerned with autism, disability rights, and/or medical therapies were opposed to the bill. The only significant exception was Autism Speaks, which paid Manatt $100,000 to write it, according to one source. Although Autism Speaks claims to represent people with autism and their families, it is largely funded by insurance and drug companies.
Early in 2010 a different bill, which would have required coverage for a broad array of specific treatments and services, both those targeted for autism and generic treatments often needed by autistic people such as speech therapy, had been introduced in the state legislature. But in a sudden move, Breslin and Morelle had that bill withdrawn and introduced Manatt’s substitute.
Paterson’s veto was somewhat unexpected. Some advocates had argued that if the bill allowed insurance companies to drop existing coverage, this could force government-funded programs, such as Medicaid, Child Health Plus, and Family Health Plus, to pay for them. Paterson’s veto message referred to this issue, and also claimed that the bill’s language would impose an unfunded mandate on state agencies involved in generating the covered treatment list.
However, in discussing his reasons for calling on the legislature to return to Albany for another session, Paterson said he would like to sign an autism insurance bill if the legislature appropriates funds to pay for its provisions.
At press time, with the legislature refusing to reconvene in 2010 until the results of some very close Senate elections (which are irrelevant until 2011) are known, it was not clear that a new autism insurance bill would be passed. Still, advocates remained concerned and vigilant.
It seems like we’re devoting more and more space to lawsuits in AccessAbility lately. There’s a reason for that: twenty years after passage of the ADA and ten years after the Supreme Court’s Olmstead decision, it has become painfully obvious that many state governments have no intention of voluntarily obeying the law requiring them to serve people with disabilities in the most integrated settings. Disability rights activists are increasingly turning to the courts to demand enforcement, and following the election of President Obama, they have gained a powerful and determined ally in the federal Department of Justice’s Office of Civil Rights.
This important settlement agreement between the US Department of Justice (DOJ) and the state of Georgia was announced in October 2010. Georgia was home to the plaintiffs in the Supreme Court’s landmark Olmstead decision, which established that failing to provide supports to people with disabilities in the most integrated settings is illegal discrimination under the ADA. But in the years that followed, the state dragged its feet on compliance, and several incidents termed “preventable” by DOJ, including deaths of inmates by suicide and assault, occurred. Eventually DOJ sued Georgia and threatened to take over administration of its disability service system.
The settlement requires Georgia to deeply cut its institutional population and greatly expand integrated community supports for people with developmental disabilities and those with mental health disabilities over five years. Although the agreement imposes much stronger integration requirements for people with mental illness than it does for those with developmental disabilities, it does create better guarantees for the latter group than New York provides. And while the settlement does not specifically bind the Georgia State Legislature to take any action regarding legislation or appropriations to implement the agreement, it does say that if the state fails to comply on grounds of insufficient funds or by not enacting necessary laws, DOJ may rescind the agreement and take the state back to court.
Georgia must move 150 people with developmental disabilities out of its “state hospitals” (large institutions that combine features of NY’s developmental and psychiatric centers) each year for 4 years and create HCBS waiver slots to serve them, and must provide family support services to 400 to 500 new families each year.
Unfortunately, contrary to claims made by DOJ and some advocates, the agreement does not specifically require the state to move all persons with developmental disabilities out of state hospitals; in the fifth year the state is only required to “ attempt” to move “remaining” persons, and must provide up to 150 new waiver slots for them.
However, the agreement states: “The State shall serve individuals in the target population receiving HCBS Waiver Program services in their own home or their family’s home consistent with each individual’s informed choice. . Individuals in the target population shall not be served in a host home or a congregate community living setting unless such placement is consistent with the individual’s informed choice. For individuals in the target population not served in their own home or their family’s home, the number of individuals served in a host home as defined by Georgia law shall not exceed two, and the number of individuals served in any congregate community living setting shall not exceed four.” (“Host home ” is the equivalent of NY’s “family care home”.)
The agreement also requires the state to create mobile crisis response teams and temporary crisis respite facilities for people with developmental disabilities.
The state must educate judges about the needs of people with developmental disabilities who have “forensic status”, and such persons must be released to individualized community settings if the relevant court approves. (“Forensic status ” means they’ve had run-ins with law enforcement; the term corresponds roughly to people incarcerated in NY’s “Local Intensive Treatment” (LIT) units†though it’s important to remember that only 20% of people in LITs in NY have been involved with the criminal justice system.)
Unfortunately, the agreement allows people with developmental disabilities coming out of state hospitals to be placed in nursing homes, ICFs, or large group “homes” if it is the person’s (or their surrogate’s) “ informed choice”.
Georgia must provide a broad array of intensive individualized integrated community support services to 9,000 people with “serious persistent mental illness” who are “currently being served in the State Hospitals, who are frequently readmitted to the State Hospitals, who are frequently seen in Emergency Rooms, who are chronically homeless, and/or who are being released from jails or prisons.” Many of these services are required to be in place by July 2011; and all must be in place within five years, including supported housing and supported employment.
The required supports include “Assertive Community Treatment” (ACT) teams, intensive case management, mobile crisis response teams, peer support services, and other comprehensive, highly individualized 24-7 integrated supports of the types preferred by mental health disability rights activists. These services will ensure that people with mental health disabilities get the medical, independent living, employment assistance and counseling services they need in their own homes, their families ’ homes, and anywhere else they may be needed. Also required are crisis apartments and maintenance of temporary acute-care community hospital beds. Reasonably low client-to-staff ratios and specific program models are mandated for these programs. At least 50% of supported housing must be “scattered site” (individual homes and apartments; no more than 20% of apartments in a building can be designated for scattered-site supported housing), and approximately 40% of scattered-site apartments should be one-bedroom, with the rest having two bedrooms. No one can be required to accept support services as a condition for getting housing. No congregate program models (such as “enclaves” or “mobile work groups” ) will be acceptable as supported employment.
People with mental health disabilities who have “forensic status” must be served if the appropriate court agrees, and there is also a requirement to serve people with dual mental health/substance abuse and mental health/brain injury diagnoses. Dual mental health/developmental disability diagnoses are not mentioned.
The settlement is troubling for its discriminatory approach toward integration for people with developmental disabilities. In specifying the most integrated program models and specific staff-to-client ratios, it provides stronger guarantees of adequate quantities of individualized integrated supports for people with mental health disabilities than it does for those with developmental disabilities. Although the settlement allows an undesirable form of congregate supported housing for some people with mental illness, this is still less restrictive than the nursing homes, ICFs, and group “homes” that the agreement permits for some people with developmental disabilities. The settlement does not say people with mental health disabilities or their families can choose to use more-segregated services. It recognizes that segregation is not desirable or appropriate for people with severe and persistent mental illness, whether they want it or not. People with developmental disabilities will not enjoy equal rights until this point is recognized for them as well.
Nevertheless, the settlement sets higher standards for integration for people with developmental disabilities than NY currently follows. Although OPWDD has an official policy that new group “homes” must have no more than four residents, it has repeatedly violated that policy both in facilities that it operates and those it funds for “voluntary” providers. OPWDD has said it will stop admissions to “developmental centers” and close them eventually. However, it refuses to stop new admissions to other institutional programs located on the grounds of its large facilities such as LITs and “ Multiple Disability Units”. It has a cookie-cutter program to build segregated congregate group “homes” for all people leaving “developmental centers”; it insists that the pace of discharges must be governed by available funds to build these new facilities, and it refuses to consider moving people directly to individual integrated residential settings instead. OPWDD’s budget allocates the vast majority of resources to segregated congregate programs and doles out tiny portions for people seeking family supports or individualized community services.
The USA v Georgia settlement suggests that a lawsuit filed against NY and OPWDD to stop new admissions to any institutional facility, to force closure of virtually all such facilities over a few years, and to obtain on-demand individualized integrated residential, family and community supports for all who request them, would surely find favor with DOJ and the federal courts.
As we reported last time, the US 2nd. Circuit Court of Appeals lifted the stay of US District Judge Nicolas Garaufis’s order in this decision. New York State was thus required to take immediate steps to implement the order that the state move 4500 people with mental illness from adult “homes” to individualized supported housing over three years.
As a result, the state Office of Mental Health issued a Request for Proposals (RFP) for supported housing providers. Also, NY ’s Most Integrated Setting Coordinating Council’s plan was edited to include this goal (the only significant change made to the plan since a draft version was issued last fall; many other changes requested by the disability rights community have been ignored).
Issuing an RFP does not commit the state to any concrete action. At last report, the state’s appeal of the decision had not been withdrawn and we were unaware of any court date for arguments.
This suit concerns OPWDD’s resistance to providing information about people incarcerated in its institutions to formally-designated Developmental Disabilities Protection and Advocacy (PADD) organizations that are investigating possible failures to comply with the ADA’s and the Supreme Court Olmstead decision’s “most-integrated setting” mandate.
We first reported on this case in the summer of 2009. Since then, DAI (Disability Advocates, Inc.) lost in a state court and has filed an appeal that will be heard by the state’s top-level Court of Appeals in December.
The case involves different interpretations of potentially conflicting provisions of federal and state law governing the actions federally-designated PADD organizations can take. DAI had obtained information indicating that some inmates of OPWDD institutions in the Albany and Hudson Valley regions were being kept in those facilities unnecessarily. Seeing a pattern of wrongful action, DAI eventually asked OPWDD for records on every person living in the facilities. OPWDD provided some records but refused to provide others on the grounds that federal law allows “legal representatives” of people in the facilities to refuse permission for release of records.
The argument hinges partly on what “legal representatives” means. DAI argues that federal law defines them solely as court-appointed legal guardians authorized to make all decisions on behalf of a legally-determined “incompetent” person. OPWDD claims that NY law, regulation, and past-practice permits any “active family member” to function as a legal representative.
State mental hygiene regulations do require OPWDD to “assess” the “capacity to consent” of people in its custodial care. However, federal and state law and regulations also clearly give adults with developmental disabilities considerable authority to make their own decisions about the supports and services they receive. And NY guardianship law states that adults cannot be deprived of decision-making rights except upon evidence considered by a judge, and the person’s ability to make decisions in different areas of life, including finances, health care, and residential life are to be considered separately; legal “incompetence” to manage finances, for example, does not automatically mean the person can’t decide where and how s/he wants to live. There is no clear language in state law indicating that “ capacity to consent” assessments, which at OPWDD can be made by relatively low-level staff members who are not experts in neurological or psychological functioning, can legally be used to deny decision-making power to adults, and plenty of law and regulation that suggests they can’t.
There is also a question of jurisdiction. DAI says the federal law gives PADD organizations the authority to determine “ probable cause” for wide-ranging investigations, including blanket requests for records. OPWDD claims that only the state ’s Commission on Quality of Care (CQC) has such authority, not organizations like DAI, which subcontract with CQC to provide PADD services using federal funds administered by the state agency.
This issue is murkier, though language granting PADD investigators broad authority to launch investigations clearly is in federal law.
OPWDD claims that it has already provided records for all of the people in the two facilities who don’t have “legal representatives”. The agency has acknowledged that there were problems with discharge policies at the facilities, but claims that they have been fixed. DAI contends there are still people in the facilities who are being denied services in the most integrated setting, and who do not have legal guardians objecting to release of their records. OPWDD also argues that there are some people who simply can’t ever safely be released, but 11 states have already closed all of their institutional facilities for people with developmental disabilities with no measurable impact on safety. More tellingly, OPWDD has also baldly told the federal Centers for Medicare and Medicaid Services that it must continue to be allowed to keep people in large institutions and overcharge for their services in order to fund the rest of its system (see OPWDD Tap Dances under Scrutiny).
We’ll stay on top of this issue and report any developments.
VETO Unscrambled to Spell VOTE
In September, Governor Paterson signed into law a bill that will finally require 100% of polling places in New York State to be accessible to people with disabilities. This is a significant victory for disability rights advocates.
The bill, for which people with disabilities fought for over a decade, repeals a “waiver” process that allowed some polling places to remain inaccessible decades after passage of the Americans with Disabilities Act, and several years after enactment of the Help America Vote Act. The latter law specifically mandated polling place access and provided funding to get it done.
Waivers were originally supposed to be temporary, granted only to polling sites where it was expected to take an extraordinary amount of effort or time to renovate or move the site. Instead, it became a routine process at several local Boards of Elections to automatically reauthorize waivers for sites whose proprietors had made no effort to improve accessibility.
This problem of petty corruption assumed absurd proportions last year, when operators of three inaccessible polling sites in New York City told Mayor Bloomburg that it would cost $1 billion to make them accessible. Bloomburg, who has a poor record of addressing disability issues over his three terms as mayor, fell for this obvious lie and convinced Paterson to veto the bill in 2009.
Outraged advocates worked hard to get the law passed again this year. Then they bombarded the Governor, who has visual disabilities but relies on family members and assistants to do things for him instead of independently using access features and technology, with demands that he sign it.
STICsters ADAPT DC for Disability Access
In September, five members of Binghamton ADAPT traveled to Washington, DC to join other ADAPT members from around the nation to demonstrate for the Community Choice Act. Below are the email messages sent back describing the events of the week:
In twelve hours we will be lining up for Monday’s action. As you all come to work and get your morning coffee, we’ ll be marching to some unknown destination somewhere in DC. Think of us.
Today we went to training about organizing actions in our home communities. It only takes 2 people to start one.
This afternoon, dressed in black shirts, we marched through the very hot streets of the capital, single file, to Freedom Plaza. It was a Memorial March, in memory of the people we have known who died waiting and trying to get out of institutions of one kind or another. With budgets being cut in every state, people spoke with great emotion about their fears that they would return to nursing homes they had escaped, because their own state was cutting homecare. Homecare is on the chopping block in way too many states.
At the end of the rally and speeches, people dropped white pieces of paper into a coffin†papers with the names of people who have died while in institutions. We filled out way too many slips of paper.
There is an intense urgency in the air and in the speeches this fall; one can feel it. Our freedom is for sale.
Bob helped a man who needed someone to push his wheelchair today. Elsie the guide dog was a real trooper but she is whipped tonight. Darlene is using her outdoor voice and hasn’t lost it yet. Kendrick is prepared for whatever tomorrow brings. Susie is making friends with everyone here.
Should we tell you about our antics and fun? What happens in DC stays in DC.
For the last few times ADAPT has been in DC, the cops have biked along beside and made a mad dash to our destinations so they could block our entrance into sites. Today, as the first group of ADAPTers proceeded up the street along the White House, the police stopped their progress as they neared the first fenced gate near the Department of the Treasury. A pre-plan resulted in the majority of people going backward and circling the previous intersection and taking it. Bruce Darling (ADAPT leader from Rochester) announced that if they wouldn’t let us demonstrate in front of the White House we would pick an area of the streets (an intersection) to take. And so we did. That surprised them somewhat.
People from ADAPT all signed a large poster board letter to the President (a letter that quoted from his statement at the ADA celebration this past July). We held signs and chanted and some camera people arrived. Bob had a hot job in the sun helping to hold a long piece of plastic that said “OUR HOMES, NOT NURSING HOMES.” We held the intersection below the Bank of America and Sun Trust. One person had a fabulous voice and led the group in singing. The people who come to this gathering are people with very significant disabilities and many say they are putting their lives on the line for others who can’t get out of nursing homes. Many have experienced institutions and their experiences drive their passion.
Later in the day as the group near the gate took the signed letter to the police and asked them to give it to the President, a group quietly and efficiently rushed one gate and hooked their handcuffs to the fence. The police were surprised and dumbfounded and we later learned that their handcuff keys don’t work on play handcuffs.
As the group by the first gate chanted and soaked up attention, a sudden “Go,Go,Go!!!” got the whole ADAPT crowd from the intersection rushing up the closed-off street. Another group took the second gate and yet another group kept running and dodging cops (Kendrick said it was like playing football again). A group of six got up to the third gate. Bruce was tackled on his way to that gate but talked very nicely to the officer. The cop let him go and Bruce sprinted to the gate to join the other five who had gotten there before him. Kendrick was one of that group. Frank (a blind man from Texas) held onto the back of a person’s chair and he and his dog made it to the last gate, too. Police concentrated on the group at the middle gate and after a long time, gave them three chances to leave before putting them under arrest. After clearing the middle gate, the police turned to the group of six. The police sergeant (when giving tickets), looked at Bruce and said “Darling? ” and Bruce said, “Yes, sweetheart.” Police fell into that one. But the sergeant himself praised ADAPT ’s superb organization and strategies.
Susie said she was shocked at how fast Kendrick moved up the street and avoided the outstretched hands of officers trying to corral people. It can be hard to stop a group of three hundred power chairs all moving at a top speed of 10 miles an hour. I watched a number of officers back up and look very surprised. They didn’t know where we were going†it was only a quick way to get to the sidewalk along the fence. As we occupied the sidewalk, more police were called in and the crime scene tape went up.
“Crippies, blinkies, and deafies†oh, my,” Darlene said.
Kendrick said their group of six at the far gate was very energized and was given a chance to leave their position but all chose to stay. He said ADAPT had his back and he knew he wasn’t out there by himself. During their arrest our Binghamton group watched and cheered from just outside the police line. Sixteen people were ticketed. I told one young officer as we left, “Remember us the next time you visit your grandparents.” Another officer warned that we should be careful this week.
The President took his helicopter to Philadelphia today, leaving the White House during the time of the demonstration, but he was met at the Philadelphia airport with signs from Philly ADAPTers who hadn’t been able to go to Washington. The coordination of that welcome was amazing.
On our way back from the White House action, the group stopped at the mayor’s office. The DC Mayor is like a state governor and this administration has been cutting home care for DC’s people with disabilities. They have been shipping people to institutions in the Philadelphia area. The old mayor wouldn’t meet with us but the incoming mayor agreed to meet. While at this site I took a picture of a policeman resting on the back bumper of one of the ADAPT vans that follows the group to help with chairs that break down. He came over to talk with me and we had a very nice conversation about his grandmother. He told me how she had been hurt by staff at a nursing home. Some people on the streets told us thank you, some ignored us, and some tried to break through the marching line to get to their destinations. Some people in the trolleys and double-decker buses took pictures and gave thumbs up. AP, CBS, and a local TV channel had cameramen there with us earlier in the afternoon.
At tonight’s meeting at the hotel, Sam Bagenstos from the Department of Justice came to speak with us. He was introduced to the group by disability rights attorney Steve Gold. Sam told the story about last April’s action at DOJ and how their own police force came to find him because a large sign with one of his quotes was being held by the ADAPTers. The police didn ’t want Sam to come outside to talk with us because they said we were a “dangerous” group. So they let two people come in to negotiate and that was when Sam agreed to come to our hotel and talk with us about our Olmstead complaints. This time we called him and he came back to the hotel to update us on cases they are pursuing. Bagenstos said that whenever we file an OCR complaint we are to copy it to Attorney General Holder and to Steve Gold. By next March, 2011, we will be able to file these complaints directly with the Department of Justice. People from several states had specific questions about Olmstead violations and when DOJ would respond to their complaints. (Bagenstos and Gold attended the NY Association on Independent Living’s conference in early October and heard more about Olmstead violations in NY.) One of the ADAPT leaders said that having DOJ finally agree to take Olmstead complaints directly was a major accomplishment. It doesn’t take a huge number of people to accomplish these things†it is the persistence and motivation of this group that comes together to fight the battle for our freedom that has led to this.
Elsie, the chocolate lab†what a trooper she has been. She has been learning a lot about walking with a group and has stayed close to Susie and Darlene. Some of the chair and scooter drivers have trouble stopping on a dime and some of us have bruised legs. Darlene found an orange and brown camouflage hat that matched her orange and brown ADAPT shirt. Imagine the fashion plate she was today! And her dog matched! Elsie has been wearing a white cotton cover over her back and it helps a bit to keep her from overheating in the warm sun.
A couple blocks from the hotel the US Department of Housing and Urban Development (HUD) rises from a concrete block. ADAPT rushed their front doors this morning and business as usual for HUD today ceased. All we wanted was a meeting with Secretary Donovan and all day long his people would not negotiate that request.
The “Welcome to HUD” sign over the doors was changed to “Welcome to ADAPT” with the addition of a pink name sign. Posters were hung on their front windows facing in so their workers could read the messages. A lot of workers leaving for lunch didn’t want our fliers but some stopped to talk. Chalk pictures and slogans were drawn on the concrete pillars and over the courtyard. An ADAPT tape (similar to crime scene tape) was stretched between pillars. We had some chats with security people and they warmed up after a few hours of chanting. Some favorite chants today: “We’re ADAPT! You’re Trapped! Get Used It!” and “Just like a nursing home†you can’t get out!”
As the end of the workday approached the ADAPT people made two lines facing the building. The red group started away from the building and the police headed off with them. The second line turned and quickly moved the other way, down around the side of the building, and filled in the areas where cars leave the underground parking (where executives park) and where the delivery trucks get in. Susie led the group to this location. Some cars came up through another area where they thought they could reroute them and they were blocked by a few large power chairs. As the cops horsed chairs out of the way, others would roll in to fill up the spots. One person told the story of an officer turning his chair on and driving it a couple inches before the person would turn the chair off again. It took a while to get the chair out of the area with the on and off, back and forth. Once the officer got the chair away from the area the guy turned it on and drove it back to the blockade. Soon a row of people closed off the intersection the workers were aiming to get to and for the second day in a row, ADAPT took a street intersection. But this one led to a major artery and it wasn’t easy for the police to re-route around it.
People in institutions can’t make their own schedules and some people were unableto get into the building for their scheduled meetings.
People in nursing homes can’t choose their lunches and some HUD workers had to find one exit in the back to leave for lunch because their lunchroom shut down today.
Post Office and Fed-Ex delivery trucks were prevented from entering their delivery area. The drivers honked and waved in support.
People in institutions can’t get out whenever they want to and the HUD workers had to wait in line, stuck in the parking areas until the Secretary of HUD agreed in writing to meet with ADAPT on October 15.
Today at a $500/plate luncheon, Nancy Pelosi was given the Alice Award, named for famous suffragette Alice Paul. Alice Paul spent some time in jail where she was abused. Nancy Pelosi’s district is home to a very large, infamous nursing home (2000 beds of hell, someone told us today). More women end up in nursing homes than men. More women end up caring for family members as they age. Nancy Pelosi does not represent the fight for women’s equality and after many letters and calls (ignored), ADAPT arrived at the swanky restaurant and chanted outside for about two hours. And gave her SUV a gauntlet through which to drive as she left...
We also visited legislative aides on the Hill.
Links to check out:
Weaker Bill May Lead to Stronger Restraints
New legislation, introduced in the Senate on September 29, 2010, seeks to restrict restraint and seclusion in schools and change the way that educators manage behavior issues among students with disabilities. The bill was introduced by Sen. Chris Dodd (D-CT), and is co-sponsored by Sen. Richard Burr (R-NC).
The bill “would allow schools to include restraint and seclusion in individualized education plans, or IEPs, for some students if they have a two-year history of behaviors that create an ‘imminent danger of serious bodily injury in school. ’” This Senate bill is similar to a House of Representatives bill that won approval in March, but the House bill would have prohibited restraint and seclusion from being included in an IEP.
The Senate made this change to gain bipartisan support after lobbyists for school administrators objected to the original bill. That opposition was apparently what caused the legislation to be stalled in the Senate for nearly a year.
The change is opposed by many disability rights advocates. They argue that “incorporating restraint and seclusion in a child’s IEP makes the techniques acceptable practice and opens the door for increased use.”
Other advocates, including Ari Ne’eman, the president of the Autistic Self Advocacy Network, acknowledge that the bill must simultaneously improve the situation for students with disabilities, while remaining a bill that can pass.
The weakening of the bill may be for naught; at press time it seemed unlikely that Congress would consider it before the end of the session. If they don’t approve it before the end of the year, the discussions and the bill-making process will have to begin again in the new Congress.
Menus will Mutter and Blackberries Blather
The Twenty-first Century Communications and Video Accessibility Act of 2010 was signed by President Obama on October 8. The new law will greatly improve accessibility of modern audio and video devices, as well as internet-based services, for people with visual and hearing disabilities. Here’s a summary of the final law:
Requires that equipment providing advanced communications via a built-in speaker provide an internal means for hearing
Redefines “telecommunications relay services.” Requires interconnected
and non-interconnected VoIP providers to contribute to the Telecommunications Relay
Requires, unless it would be an undue burden, that equipment and services for
advanced communications be usable by people with disabilities. Requires, if that
requirement is an undue burden, that the equipment or service be compatible with
existing commonly used peripheral devices or specialized customer equipment, unless that
requirement would be an undue burden.
Establishes an accessible products and services clearinghouse that is publicly
Authorizes Lifeline and Link Up programs and other federal universal service support
mechanisms to be used for those telecommunications services, internet access services,
and advanced communications that are needed by people with disabilities.
- Defines as eligible for universal service support certified programs that
distribute equipment to make telecommunications service, internet services, and advanced
communications accessible by people who are deaf-blind.
Requires every provider of internet access service and manufacturer of internet
access devices, unless it would be an undue burden, to make user interfaces accessible
to people with disabilities.
Requires that devices that receive or play back video programming and have a
picture screen of any size be capable of decoding closed captioning, transmitting and
delivering video description, and conveying emergency information.
Requires that devices to record video programming retain and pass through closed
captions and video descriptions.
Ratifies and considers in full force and effect the Federal Communications
Commission’s (FCC’s) video description regulations contained in a specified
Report and Order. Defines, for certain portions of the Act, “video
programming” as including programming distributed over the internet or by other
Requires video programming owners, providers, and distributors to convey emergency
information accessibly to people who are blind or visually-impaired.
Requires that devices to receive or play back video, including using the internet,
allow control by people with disabilities and that on-screen menus be accompanied by
integrated or peripheral audio output to enable control by people who are blind or
- Requires each provider or owner of video programming and each multi-channel programming distributor to ensure that video programming information and selection provided by means of a navigational device, guide, or menu is accessible in real-time by people with disabilities who are unable to read the visual display.
“Home of Your Own”
Program Hanging by a Thread?
In a cryptic announcement made by an OPWDD official at a meeting in western NY earlier this fall, it was revealed that OPWDD ’s Home of Your Own program has been “suspended”.
The program offered a variety of resources to help people with developmental disabilities and their families obtain permanent, truly-integrated residences in the community that actually belong to them. These resources included information and referral; training, including help to set up so-called “special needs trusts”; special mortgage set-asides with low rates and down payments; and more.
The OPWDD official indicated that SONYMA (the State of New York Mortgage Agency) was “the deciding factor” in the suspension, and that there are “issues” with the program’s administration.
There was no word on whether or when the program would be resumed. The OPWDD Home of Your Own website appears to be unchanged.
If They’ve Got Your Number, You’re a Citizen
The NY State Department of Health has issued a new directive that will allow people applying for Medicaid, Family Health Plus or Child Health Plus to attest to their identity and citizenship so long as they have a valid Social Security number. In other words, if a person has a valid Social Security number they will not be required to submit original citizenship and identity proof. Instead, the applicant will submit their Social Security number and the state and local districts will conduct a third party data match with the Social Security Administration (SSA).
People who do not have a valid Social Security number will still be required to submit original documentation to verify their identity and citizenship. This will include people who acquired their US citizenship through the naturalization process because the Social Security Administration does not retain files for those applicants. Finally, if a data match is conducted and the SSA does not return a valid match, the applicant will be given 90 days to submit original documentation to either a local district or a facilitated enroller.
Can Your Doctor Really Tell a Broccoli
from a Human Being?
As we reported this summer, NY has a new law that permits family members, guardians or doctors to let you die if they think you ’re beyond help and you can’t communicate your wishes directly. The Family Health Care Decisions Act does require that a legal guardian or a close family member be asked to make this decision. However, if such persons aren’t available, the decision can be made by your doctor if s/he can get another doctor to agree.
One of the situations that can trigger this decision-making process is if you are judged to be “permanently unconscious ”. This is often called “persistent vegetative state”.
There seems to be remarkably little research on how accurately doctors can diagnose this condition. However, a seminal study was conducted in 1996, and its results are still being cited in the medical literature that discusses aspects of coma diagnosis and treatment.
The study, “Misdiagnosis of the Vegetative State: Retrospective Study in a Rehabilitation Unit”, was published in the British Medical Journal. It found that 43% of the patients studied had been misdiagnosed. Almost half of them had been considered “vegetative” for over a year; a few of them had been misdiagnosed for over four years. Most of the misdiagnosed patients were blind, so they couldn’t display voluntary eye movementಘa common quick test for the condition.
The researchers provided a simple switch that sounded a buzzer when pressed, and put it within reach of any finger or other part of the body that the patient seemed able to move. They then trained the patients to press the switch once for “yes ” and twice for “no”. They found that the misdiagnosed patients were able to consistently and correctly answer questions about themselves this way. Later they were trained to use various communication devices to spell out words and express complex thoughts.
So if your doctor says you are in a “persistent vegetative state” without first ordering an extensive program of physical and occupational therapy to find out what you actually can and cannot do, s/he is very likely to be wrong.
Three years after this study was published, the Journal of the American Medical Association noted the “impossibility of attaining objective assurance” that anyone really is beyond all help.
This is why passing this law was a big mistake, and why it is critically important for you to have a formal written “ advanced healthcare directive” and a designated “agent” to make sure it is followed.
For more information:
Affordable and Accessible Housing
For the majority of us, a home is more than wood and bricks, it is our peace of mind, an expression of our personality. The type of home in which people live reflects their tastes and priorities. Deciding to change that home, through remodeling or relocation, is a major decision. Finding the right home, whether a house or an apartment, requires attention to many details: price range, location, aesthetics, overall floor space, the number of bedrooms, and more. People with disabilities face these same considerations. However, as important as they are, these decisions are overshadowed by the need for a home to be accessible; housing that enables a person with a disability to live their lives in the home of their choice and as independently as possible.
Whether or not a home is accessible depends on the nature and extent of the person’s disability. An accessible home is one that enables a person to do what he or she needs and desires to do as independently as possible. For some, access may be as simple as adding grab bars and a tub seat in the bathroom. For wheelchair users, access may require ramping entrances, widening doorways, lowering counters, adding lever or loop-style hardware to doors and drawers, and modifying storage areas. Individuals with hearing disabilities require visual adaptations for such items as the telephone ringer, the doorbell, and smoke alarms. People with low vision may be accommodated with large print markings and displays, contrasting colors to distinguish changes in level or transition from one area to another, proper lighting, and reduced glare from lighting and windows.
An accessible designed home generally refers to houses or other dwellings that meet specific requirements for accessibility. These requirements are found in state and local building codes, regulations such as the Fair Housing Amendments of 1988, the American National Standards Institute (ANSI) Standards, and the Americans with Disabilities Act Architectural Guidelines (ADAAG). The more stringent of these codes are what are enforced in NY. They dictate standard dimensions and characteristics for such features as doorwidths, clear space for wheelchair mobility, audible and visual signals, grab bars, switch and outlet height, etc.
Homeowner and renter assistance for elderly, disabled and low to very low-income households is provided through a variety of programs such as:
- Local administrators for the Section 8 Housing Voucher Programs (HUD Rental Assistance, also know as Housing Choice Voucher program)
- USDA Rural Development rent subsidy, loans and grants
- HOME Program; provides funds to acquire, rehabilitate, or construct housing, or to provide assistance to low-income home-buyers and renters
- Affordable Home Repair Program or Home Rehabilitation Services
- Access to Home Program; provides financial assistance to property owners to make dwelling units accessible for low- and moderate income persons with disabilities
- RESTORE Program; Residential Emergency Services to Offer (Home) Repairs to the Elderly (RESTORE). Program funds may be used to pay for the cost of emergency repairs to eliminate hazardous conditions in homes owned by the elderly when the homeowners cannot afford to make the repairs in a timely fashion.
- Rural Preservation Program; provides assistance including, but not limited to, housing rehabilitation, home buyer counseling, tenant counseling, landlord/tenant mediation, community rehabilitation and renewal, crime watch programs, employment programs, legal assistance, and Main Street Development
- Emergency Furnace Replacement Program
- Community Development Block Grants
- Weatherization and Energy Management
- Subsidized Rental Housing
- Manufactured Home Replacement Initiative
- Ramps: Broome County, call Faith in Action Ramp It Up Program, (607) 724-9130
Tioga County, call Tioga County Rural Ministry, (607) 687-3021
For additional information or to see if you qualify for renters’ or homeowners’ assistance in your county, contact an appropriate agency listed below:
(607) 724-2111 (voice/TTY)
(607) 238-2694 (VP)
1 N. Main Street, 2nd floor
Cortland, NY 13045
(607) 753-0851 ext 4
(607) 753-3190 Fax
Monday - Friday: 9:00 am - 5:00 pm
1-888-736-8457 (En Espa¤ol)
Binghamton, NY 13902
Phone: (607) 723-9491
Endwell, NY 13760-5990
Phone: (607) 786-2985
Fax: (607) 748-0041
Binghamton, NY 13901
Phone: (607) 723-6493
Fax: (607) 723-6497
43 Hale St. PO Box 470
Norwich, NY 13815-0470
Phone: (607) 336-2101
Fax: (607) 336-3089
Owego, NY 13827
TDD: (607) 687-5905
Fax: (607) 687-2017
Adaptable Design, Visitability and Universal Design
Our Friends at BAE Brighten the Holidays
For the past several years the staff at BAE have adopted families in need who obtain services through STIC. These families would not have much of a holiday without the generosity of the many kind people who work at BAE. Patricia Ciza started this initiative many years ago with the support of her manager Steve Kraley. Many of her coworkers jumped on the bandwagon to provide a wonderful holiday for our families.
Often families of children with disabilities are unable to work full time due to the high demands that the care of their children place on them. When the holidays roll around the families are unable to afford the gifts that their children would hope for. Those gifts and more end up under the families’ Christmas trees and brighten the spirits of everyone in the family.
BAE supports STIC in many ways. They assist with funding and volunteer at STIC’s annual light festival in Otsiningo park. We are so fortunate to have such caring partners in our community. MANY THANKS BAE&;we can’t thank you enough.
I come from working at the Southern Tier AIDS Program for the past 3 and 1/2 years. I have two children, both boys, one of whom is in the army in Afghanistan. I also have 2 dogs and 3 horses, and two are expecting babies in June of next year. I am looking forward to working here for a long time.
I am the new Administrative Assistant for the TBI RRDC. I have lived in Hallstead, PA for the past 20 years. I am originally from Kirkwood where I lived up until my move to Hallstead.
I have been happily married for 15 years to Ted. We have 2 teenage boys, TJ who is 15 and Jonathan who is 13, that continue to challenge us and make our lives very interesting.
with auto parts deliveries in 1993 to working in the administrative office here in Binghamton since July 2008. I consider myself very fortunate to work in this organization and look forward to working here at STIC and meeting new people. Thank you all for your warm welcome!!!
Haunted Halls Had a Haul
Thanks to you, our first “Haunted Halls of Horror” fundraiser was a huge success. In just 5 evenings, the haunted house raised over $2,500. That’s net profit, folks, after deducting all expenses
So next year we’ll make it bigger and better, with longer hours. We hope nobody will be too scared to come back, and thank you again!
Computer Courtesy Tips for Agency Professionals
1. Office 2007 “x” files (.docx, .xlsx, .pptx) are NOT standard formats. Be courteous! Do not expect other people to be able to open them. When creating documents in Office 2007 or 2010, use the “Save as Type” option to save them in standard formats (.doc, .xls, .ppt). Just taking the “x” off doesn’t work; you have to use Save as Type.
2. Avoid creating huge PDF files! If you’re putting graphics in a PDF file, use your photo-editing software to compress each image’s file size first. Be courteous; don’t force people to wait 15 minutes to download your huge email attachments.
Please Tell Us What You Think!
People who use wheelchairs to get around their homes and communities may meet a variety of obstacles that make it difficult to participate in everyday activities. Researchers at Georgia Tech are interested in learning more about how people modify their homes to make activities in their home easier to get done.
The Center for Assistive Technology Access at the University of Georgia invites anyone who uses a wheelchair for most of their activities to participate in a study about home modifications. This study will take approximately 1 hour and you will be reimbursed $25.00 for your time.
Please email Dr. Fran Harris at: firstname.lastname@example.org or call us at (404) 894-4960 to request details about this study.