Epic Fail

by Ken Dibble

The flipside of sympathy is contempt. The flipside of respect is power.

Back in 1993, journalist Joseph Shapiro, author of No Pity: People with Disabilities Forging a New Civil Rights Movement, asked, “What happens when Congress grants a new minority group rights and society has little understanding of those rights, why they were awarded, or even why they are needed?” He was talking about the Americans with Disabilities Act (ADA), which had been enacted into law three years earlier—20 years ago this July.

Shapiro predicted that “As the newly recognized minority of people with disabilities asserts those rights, there will be many breakthroughs for equality. But there will also be clashes, misunderstandings, even a backlash.”

Although Shapiro’s book was an excellent summary of disability history up to that point, twenty years after the ADA was signed into law and seventeen years after he wrote those words, it looks like Shapiro was a better historian than prognosticator. There have been a few, not “many”, breakthroughs for equality. There have been even fewer “clashes”. Misunderstanding has been rampant and the backlash is rising.

Today, the unemployment rate for people with disabilities still hovers around 70%—that is the same number that was cited by those who advocated for the ADA’s passage.

The percentage of Medicaid dollars that is reported to be spent on “institutional settings” nationwide has allegedly declined from over 80% to around 67% in that time—but there is wide variation from state to state, and the MR/DD establishment has been skewing the numbers by filing false reports, claiming that its smaller segregated congregate residential facilities are not institutions. Meanwhile, improved medical technology has meant that while fewer elderly people are choosing nursing facilities, more young people with very significant disabilities are surviving childhood—or battle injuries—and ending up in those places.

You’re reading this because you have a strong interest in disability issues. Most of the public does not. Although some local media will respond when people with disabilities make news, it is very difficult to get national coverage for our issues. In April ADAPT, which we strongly support, organized a week of protests in Washington, DC. Hundreds of people with disabilities marched, blocked traffic, protested, day after day. There was virtually no national coverage. Last year it was revealed that the state of Texas was subsidizing a turkey processing company that had been shipping people with intellectual disabilities to work in a factory in Iowa for decades. Dozens of them were housed in a decrepit shack by the company, which paid them virtually nothing and then took most of that back to cover “room and board”. Almost nobody heard about it, despite the fact that two state governments were involved. The federal Department of Labor is suing the company owner; the case won’t go to court until 2011. The State of Iowa is also investigating. As is typical when people with disabilities are neglected, robbed, or abused, these are regarded as civil cases; nobody is contemplating criminal charges.

There is nothing even close to an ongoing national debate on disability rights like there is for civil rights based on race, gender, or sexual orientation. Twenty years after the ADA, though you now see people using wheelchairs in public fairly often, people with disabilities as a group are still “out of sight, out of mind”.

Iowa Senator Tom Harkin, universally regarded as a champion of disability rights, was shocked to hear about the turkey factory. He held a Senate hearing on disability employment issues, where it was revealed that even though it is legal under federal law in some cases to pay people with disabilities less than minimum wage, it is common for highly productive workers with disabilities to be underpaid in violation of that law, and for employers who do this to go unpunished. This hearing was not widely publicized.

In California, a disability rights advocacy organization reported that serious neglect and abuse of people in nursing facilities is frequently swept under the rug. It’s worth taking the time to read about what was going on in those places:

“A middle aged resident with cerebral palsy and a cognitive impairment was paraded naked and soaking wet back to his room in front of others after being forced by staff to take cold showers. The abuse went on for months and was witnessed by other staff who did nothing.

A 41-year-old man was struck in the mouth with a closed fist by a staff member and then slapped. Bleeding from a cut on his lip, he told staff about the assault. The facility delayed for days before reporting. Prosecutors refused to take the case because they lacked physical evidence.

An activity assistant shoved and then released two elderly women sitting in wheelchairs. They sailed down the corridor and slammed into the wall where they sat, immobile and stranded.

While assisting a female resident with her bath, a male aide fondled her breasts. She complained to the facility administrator but, two days later, the aide came back to work and was assigned to the same residents.

A man with fragile, tissue-paper-like skin was forced into a whirlpool bath. His skin tore in three places as he was getting in; one tear went from his wrist to his armpit. A visitor heard his screams and reported the abuse. Facility staff contend they did nothing wrong.”

Although these incidents were crimes, most of them were handled as “licensure deficiencies” or “employee issues ”. Did you know that if you report something like this to a federal Long Term Care Ombudsman, s/he can’t report the crime to law enforcement authorities without the consent of the victim—who may either have cognitive disabilities and/or be terrified of retaliation and therefore be incapable of giving consent?

Across the nation, as we’ve reported, children with significant intellectual and/or mental health disabilities are neglected, abused, and sometimes killed in public schools. Law enforcement almost always refuses to get involved, and these incidents are written off as “unfortunate accidents” or, at worst, “staff training issues”. Although there has been an effort to pass legislation in Congress to make schools set standards for preventing, reporting, and punishing abuse and neglect of students with disabilities (and it passed the House of Representatives in March), most people haven’t heard about it. Talk to the average citizen about this, and they will be under the impression that it’s about “coddling” violent juvenile delinquents in the schools. A typical media report on the issue will briefly mention incidents of abuse, then report two or three school officials complaining about “unfunded mandates” and “tying teachers’ hands”.

When federal District Court Judge Nicholas Garaufis ordered New York State to move 4200 people with mental illnesses out of huge segregated adult “homes” into supported living in the DAI v Paterson case, the public outcry was immediate and extremely nasty. A NY Post editorial called Garaufis an “arrogant twit”. A columnist for that paper called people with mental illness an “army of the damned”. The NY Daily News opposed the order in an editorial called “Judged Crazy”. DAI had presented voluminous evidence, some of it in documents provided by the state itself, in a lawsuit that dragged on for several years, that most of the people in the adult “homes” were capable of much greater independence and that supported living provides substantial ongoing assistance to people who need it. DAI also provided data to show that individualized supported living is less expensive than adult “homes”. The editorial writers ignored all that evidence and instead claimed the order would rob taxpayers and put completely incompetent and dangerous people out on the street. Public comment echoed these sentiments with shocking expressions of hatred.

What answers do you think you would get if you asked a group of ordinary people whether they think domestic violence toward women is a big problem in our society? What do you think they would say if you asked if institutional violence toward people with disabilities is a big problem?

When illegal aliens—a group that is not well-liked in our society—are duped or forced into working in miserable sweatshops or subjected to slow death in locked truck trailers or in the desert, people are outraged, and the incidents stay in people’s memories for a long time. International boycotts of sweatshop operators are organized and promoted by famous people. When people with disabilities are ripped off for their labor and locked up in uninhabitable shacks, there may be momentary expressions of shock and sympathy—if anybody hears about it at all—but within hours or days everybody forgets about it. When was the last time you saw a famous celebrity organizing a boycott of sheltered workshops?

What do you think would happen if the NY Post called impoverished black people an “Army of the Lazy”, and commenters cheered them on with language we won’t even print here? Do you think the response would be limited to a few anguished postings on civil rights listservs?

ADAPT rightly pats itself on the back for getting a few hundred people with significant disabilities on the street for a week of protests in Washington, DC. After all, when you’re dealing with people, most of whom live in poverty but need accessible vehicles to go anywhere, and many of whom have issues with recharging ventilator or wheelchair batteries, strict medication regimens, or personal attendant schedules, it is indeed an accomplishment to assemble a crowd.

On the other hand, protests of a few hundred people somewhere in Washington are a commonplace event. When Hispanics or blacks or women or gays call for a protest, they get tens of thousands of people on the street, and along with their massive presence comes at least an implicit threat of unruliness, maybe even violence.

Unfortunately, the rest of the world is not going to look at ADAPT’s 350 people and say, “Wow! What an effort that must have taken! These people must really be dedicated and serious, and we should listen to them.” No, the rest of the world is going to look at that small crowd and say, “What a cute little bunch of crackpots,” and go on about their business. This is what the media does, and this is what the public does.

Civil rights struggles are about ongoing personal sacrifice, raw physical power and the threat of things getting out of hand. That ’s what it takes to win these battles.

I don’t want people to think I’m disparaging the efforts of those who do participate. People with disabilities face real limitations in what they can do in terms of staging effective mass demonstrations. And, of course, it’s not a good thing to start riots and burn cars and buildings.

But if we want to win at the same level that black people and women have won before us, we have to create the same kind of decisively dramatic impact that they did. That is an inescapable fact. If people with disabilities can’t generate big ugly crowds, and we don’t have hundreds of years of slow-growing, well-publicized moral outrage behind our issues, what can we do to turn things around? Can things be turned around at all?


If it’s true that people with the most significant disabilities have a very hard time getting out on the street, then their less- or non-disabled friends and family members have a much greater obligation to do so. Even if it costs some money or time off work. For people with disabilities, attendant services, freedom from abuse and neglect, the ability to come and go freely and maintain emotionally sustaining relationships with family, friends and co-workers in their communities, is a matter of life and death. The next time we ask you to join us in Albany for a rally, how about, if it won’t actually kill you, you come over here and get on the bus? You’ll be amazed at how much fun you’ll have (see How Do You Spell Power? ).

Maybe protests could be more effectively targeted. Yes, ADAPT has been protesting against CNN because its hired commentator, Deepak Chopra, incorrectly stated that the Community Choice Act is about hospital accessibility. This is a tough message to convey though. Try searching Google on “ADAPT CNN Deepak Chopra” or “Community Choice Act CNN Deepak Chopra” and see if you can find even one hit from mainstream media on this issue. Why not make it simpler? Why shouldn’t the message simply be, “Cover our issues like you cover those of Hispanics or gays or anti-abortion crusaders?” Or maybe more could be achieved by blockading certain NYS agency commissioners in their offices and not allowing them to leave until they, say, agree to withdraw the state’s appeal of DAI v Paterson, or to start transferring existing funds from group homes to integrated individualized supports. If they get out of their offices, find out where they live and go there.

As Joseph Shapiro pointed out, we have national laws in place to protect the civil rights of people with disabilities, even though most people don’t understand them. Nothing educates bigoted public officials or corporate managers like a good old fashioned lawsuit. How about we stop deluding ourselves that these people will really negotiate with us in good faith? The next time you ’re placed on a waiting list for integrated community-based services because you don’t want to live in, or send your loved one to, a segregated facility, why not consider that this is illegal discrimination under the ADA and file a lawsuit? Even if it costs you some money. The federal government is showing how it should be done in Arkansas; see USA v Arkansas. How about, if you have some money, contributing it to a legal defense fund to pay for these kinds of activities?

Let’s stop relying on the fickle and fleeting sympathies of people who don’t understand our issues. Let’s start amassing real power and targeting it effectively. The flipside of sympathy is contempt. The flipside of respect is power. How do we spell power? Right now, in the active disability community we spell it “ADAPT” Wouldn’t it be great to be able to spell it “EVERYONE”?

STIC now has a
(877) 722-9150
June 2010


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How Do You Spell Power?

by Bob Deemie, Darlene Dickinson, Kendrick Kemp, Susie Link and Susan Ruff

The last week of April offered five STICsters the opportunity to travel to Washington to join hundreds of people from around the country for several days of ADAPT actions in support of disability civil rights and the passage of the Community Choice Act (CCA).

The CCA, if passed, would give people with disabilities in every state a choice of homecare or nursing facility care. According to ADAPT, “Sixty seven percent of Medicaid long term dollars pay for institutional services, while the remaining thirty three percent must cover all the community based waivers, optional programs, etc.” Passing the CCA will allow people who need attendant services to live in their own homes in every state.

Across the nation Olmstead cases and civil rights cases are being fought (see Courts Watch) and disability rights advocates want the Department of Justice to actively enforce the ADA and other laws and regulations.

Support for this trip came from the Center for Disability Rights, Rochester ADAPT, STIC, and several fundraising events. What follows are some comments sent back that week via emails or gathered afterwards.

Kendrick:I traveled from Binghamton to Rochester to catch the bus with people from the Center for Disability Rights (CDR). This took some advanced planning. My co-workers from STIC came down on a separate wheelchair-accessible van, also provided by CDR. Before the trip, during planning, we talked about the ways we would help and support each other once we got to Washington. People from CDR and other places didn’t know I was new to this experience; they took me under their wing and included me, sharing stories of past marches, current experiences of peoples’ lives, food and friendship. I was glad to meet up with the group from STIC once we all got to DC.

Sue Ruff, Susie Link, Bob and Darlene; Saturday: We gathered our luggage at STIC and waited for the van. John, Lisa, Terri and Karen from Rochester arrived late morning Saturday and made room to squeeze us all in. Susie and Darlene got parked beside each other in the far back, wedged in with luggage and snacks. John and Lisa, sharing driving duties, got us to Washington. Darlene has been morphing into the “Germinator” as a chest cold is trying to take control of her body. She tried to sleep on the way a bit (we have pictures). She needs a lot of tissues. When we arrived we bought our bright blue ADAPT shirts, met up with Kendrick, got our assignments to the purple team, and settled into our rooms. Hotel staff offered to put rubber sheets on Bob’s bed; he declined. After sharing a lovely dinner (Kendrick is a barbecue fan), we settled in for the night. Susie threatened to keep the TV on all night but she didn’t.

Kendrick, Sunday: Sunday was a planning day. All the new people were required to attend an orientation meeting where the expectations were laid out:

  • How the group would move through the city
  • How the group was expected to be non-violent at all times (in the manner of Martin Luther King and Gandhi)
  • How the group was to follow the directions of the color leaders (everyone is assigned to be part of one of six color groups and the leaders get the groups to the destinations)
  • How to keep positive, focused, and help your color team
  • How to react to police, spectators, traffic, and people at the demonstration sites
  • How to communicate your needs to your color leader during the marching
  • How to chant (ADAPT has many wonderful and loud chants)

Role playing demonstrated these expectations. After training everyone went to a park for the ADAPT Fun Run. This is a fundraiser that helps pay expenses for people to travel, as almost everyone who comes lives on small incomes and has to raise the money for the trip.

Sue Ruff, Susie Link, Bob and Darlene; Sunday: We went to the newbies training this morning and we learned that our mouths are not as loud as others’. “See, we told you we weren’t so loud!” Susie said. We learned some chants, how to keep the single line of the march tight so the group would not get separated, and what to do if someone’s wheelchair stopped (while color leaders help people in need, keep the line moving, like water round a rock). At the Fun Run, Bob and Kendrick did many laps. Yoshiko Dart, the widow of Justin Dart, was at the Fun Run, pushing her husband’s wheelchair with his famous Stetson hat on the seat. (Justin Dart was widely acclaimed as the Father of the ADA; he died about eight years ago). When Susie called out, “Yeah, Justin!” it made Mrs. Dart smile. Seeing Mrs. Dart go around the track time after time brought tears to Sue’s eyes. The spirit of Justin Dart was with us and after decades we are still fighting for our rights.

Monday: Bob: “Up too early.” Sue, Darlene; “The Germinator Part 2”: Poor, poor, persecuted Darlene—who now sounds like she has bronchitis (“No, it’s a chest cold”, she argues)—is having trouble breathing, talking, chanting, yelling, but “it’s just a damn chest cold ...”

We have learned a new chant—“There ain’t no power like the power of ADAPT, ‘cause the power of ADAPT won ’t stop! Say what?!” (repeat hundreds of times). And they heard it loud and clear at the Department of Justice (DOJ) as hundreds of people with disabilities lined the front of the building. Getting to DOJ with a police escort through the streets was an awe-inspiring sight and an exercise in discipline and organization as marchers walked mostly one by one in tight formation. People with vision problems had the help of service dogs and other marchers, ASL interpreters assisted people who were deaf, and onlookers could only stare at a line of people mostly using wheelchairs and scooters, a line that extended for several blocks. Undeterred by a downpour, people covered up with ponchos and umbrellas and helped people in chairs cover their legs, joysticks and batteries.

DOJ needed to hear stories from around the country and people were prepared to share them. An institutional bias in the federal Medicaid program requires states to offer expensive and undesirable nursing home care, which allows states to cut efficient and effective community services to balance their budgets. Sam Bagenstos from DOJ committed himself to speak to the whole of ADAPT at the hotel where we were staying and answer our questions on Wednesday.

We marched on to the Hall of States to meet with Ray Sheppach of the National Governor’s Association, who after a chant-filled hour or more, met with the group’s leaders and agreed to work with ADAPT on the issues facing our people in each state, as services are being cut. Kendrick was in the group closest to the door of the NGA, Sue snapped pictures, Darlene, Bob and Susie held signs and chanted. Susie offered the police officers some snacks and got them to smile. Every one of the marchers has been making new friends. Footsore and hungry, we attended a group meeting at the hotel and found out that the next day’s work would start very early.

Tuesday: Bob: “Up way too early.” Kendrick: On Tuesday, we left the hotel at the extremely early hour of 5 am. I was up by 3:30, anxious to get started. Our team leaders were already in the lobby to line us up. We walked 3.4 miles, mostly uphill, through the city to the Hilton. Speaker of the House Nancy Pelosi was scheduled to speak at a conference for the American Hospital Association. That group supports the Community Choice Act, but Speaker Pelosi has not signed on. She would not come out to speak with us, despite our loud chanting. However, ABC journalist Sam Donaldson, there to interview her, took a copy of our demands in to her. He thought the demands were very reasonable. ADAPT will continue to pressure Pelosi in the coming weeks.

Following a break at Dupont Park, the group was lined up again and marched to the American Health Care Association office (near FOX News). This is the lobbying wing of the nursing home industry. After a brief but intense encounter outside their office, they agreed to review our demands and meet with ADAPT in thirty days. When one of our leaders, Bruce Darling, asked what we would do if ACHA didn’t keep their promise, the demonstrators shouted, ‘We’ll be back!’”

Sue: Bob pushed Darlene in a manual chair in the morning as the “Germinator” had her coughing intensely. Having that chair proved very helpful as it gave me a place to rest my arthritic joints and Darlene, feeling better in the afternoon, pushed me back to the hotel. And she didn’t dump me in a pothole or run me into a police escort car. Darlene had to leave Olivia, her dog, at home, as Olie has arthritis problems, too. Maria had loaned Darlene her white cane for the week, but Susie and her power chair (when it didn’t run out of juice) were most helpful for Darlene’s navigation. On the long march back to the hotel, one of the policemen told Kendrick how much he liked escorting ADAPT because they had a good cause and were so well organized.

Wednesday:Susie, Darlene, and Sue: It was an all-day legislative action day. At 8 am we started up to the Hill to a press conference at one of the legislative buildings. Kendrick passed out lots of fliers on the way and we watched people respond to his warm smiles. ADAPT had figured out through Harris polls and research done by Cornell and Syracuse University that 89% of Americans support the CCA and want people to be able to live in their own homes instead of nursing homes, and that the cost to the middle-class taxpayers would be $6.07 per year. That’s less than a movie ticket and about the same as a fancy cup of coffee! People from several national groups spoke at the press conference. That $6.07 is about 2 cents a day and we left the press conference to give legislators our personal 2 cents on signing on to the bill. One of our first stops was Nancy Pelosi ’s office. We left a DVD that had been done by a STIC consumer who lives at home with support. We visited several other Congressmen and chatted with their staff about the bill. We also had a sit down meeting with Congressman Mike Arcuri (a co-sponsor) and asked him to find some other Representatives to sign on. We told him several stories about people from our region of the state and left another copy of the DVD for him to share with his friends in Congress. Congressman Arcuri spoke with us so long he almost missed getting to the floor for a vote.

A personal care aide from Rochester was resting in the halls of one of the buildings and was approached by Congressman Hinchey. He sat down and spoke with her for about 20 minutes about the CCA. Sue made a meeting with a staffer from Senator Gillibrand ’s office and Bob, Kendrick, Sue and several people from CDR met with Senator Schumer at a late meeting after 6:30 pm. Our story about the very high cost of institutional care ($1.2 million for a person at Broome Developmental Center per year) and how much we could do with it seemed to resonate with Schumer and his staff person. Everyone shared stories. In addition to helping move the Community Choice Act along, Gillibrand’s and Schumer’s staff were strongly urged to support the Restraint/Seclusion bill (S.1280) protecting school children.

Susie and Darlene: The Assistant Attorney General for Civil Rights came to speak with the ADAPT people this afternoon. At first he seemed very professional and nervous. As stories were shared, he progressively warmed up and told us to file complaints. So many stories were told with such eloquence and passion, he was given a picture of how pervasive and far-reaching the offenses are.

Bob got some heavy exercise as he pushed a dead power chair back from Schumer’s office. Darlene wants to call him “ Tow-Truck Bob”. Susie, bringing her own chair with her to legislative offices, didn’t need to have the staff find her a place to sit. Since the offices were rather small she impressed them with her driving and parking skills. Over the week Susie watched several people who had wheelchairs with high speed ability and she wants one - NOW. Bob was nearly run over by one wheelchair user, and his bruised ankles hurt.

We made some wonderful new friends and we will miss them when we go home. ADAPT is a large family and we all take care of each other.

Bob: “The Independent Living Movement is a stark reminder to humanity of not only what humanity can achieve when they put their minds to something, but also a reminder of what is truly important in our lives—freedom. It also reminds us the things we tend to focus on the most—;race, sex, religion, politics—aren’t everything we are as human beings. We are much more.”

Maria had warned Darlene to not lose the white cane. Did the cane make it back to STIC or is it hopelessly wandering the streets of DC in search of new adventures? Over the week, Darlene thought of the many uses for that piece of equipment.

Darlene’s Top 10 Alternative Uses for Maria’s Borrowed White Cane

10. ADAPT action roving reporter microphone
9. Whirling Ninja staff-weapon (oops, didn’t see you standing there, so sorry)
8. Blinkee ID badge
7. Team color marker (with purple duct tape on the handle)
6. Chanting beat timer
5. Police officer shin whacker (oops, didn’t see you standing there, so sorry)
4. Arm extender
3. Light saber - may the force be with you (oops, didn’t see you standing there, so sorry)
2.Susie silencer/annoyance
1. Maria Dibble’s official representative at the ADAPT action; “This is Maria Dibble’s cane and she’s not afraid to let me use it.”

How do you spell power? A-D-A-P-T

A Binghamton ADAPT group is forming and people with disabilities, their family members and friends are invited to join. Call Sue Ruff at 724-2111 (voice/TTY) if you are interested.

Courts Watch

DAI v Paterson

As expected, a few days after we went to press in March, Governor Paterson announced that he would appeal the federal District Court judge’s order that NYS move over 4200 people with mental health disabilities out of segregated adult “homes” and into individualized supported living situations within three years.

Accompanying Paterson’s announcement was a firestorm of angry, and in some cases bitterly personal, attacks against the federal judge, Nicholas Garaufis, and against people with mental illness, in the New York City regional media. The outcry showed that ignorance about mental illness and available supports and services is widespread, not only among the general public and media pundits, but among mental health professionals as well.

A troubling point was raised by New York Post columnist Andrea Peyser. In a March 8, 2010 column, she revealed that Judge Garaufis’s wife, Elizabeth Seidman, is on the Board of Directors of Fountain House, an agency that provides supported housing in New York City. Garaufis’s remarks in his decisions have conveyed a deeper understanding of mental health issues and the ways in which various service models actually work than we have ever seen from a judge involved in disability-related litigation. It’s probably fair to assume that some of this understanding comes from his wife. On the other hand, Peyser also reported that Garaufis revealed this potential conflict of interest to both parties in a hearing in 2007. Neither side objected, so Garaufis remained on the case.

The NYC ABC TV station’s website featured a lengthy article that emphasized the views of controversial psychiatrist E. Fuller Torrey, who said he doesn’t “trust” supported living programs to provide proper medication management, and who claimed in the article that up to ten percent of all homicides in the US are committed by people with mental illnesses who are off their medication. We could not find a research source for that claim. However, in the late 1990s Torrey claimed that 5% of homicides were committed by non-medicated people with mental illness. Critics quickly demonstrated that the actual study Torrey was referring to had a 4.3% rate. Torrey claimed this worked out to 1000 homicides a year, but the actual study’s figure was 727 homicides in a year when over 16,900 homicides were committed. Such data do not prove that mental illness predisposes people to commit homicides any more than any other characteristic held by fewer than five percent of killers does. Other research has consistently shown that people with mental illnesses are, overall, slightly less violent than the general public as a whole, and that people with mental illness are far more likely to be victims of violence than perpetrators. In any case, the lack of “trust” expressed by Torrey, who lives in the Washington, DC area, is not based on any hard evidence concerning the effectiveness of case management and other supports and services in existing supported living programs in New York State.

Although in DAI v Paterson the state’s lawyers tried to argue against the state’s own policies, procedures, and service records to claim that supported living programs provide only “minimal supervision and assistance” to people with mental illness, the fact is that the amount of support provided varies according to individual needs, and most supported living programs have a very good track record of assisting people to stay on their medications and pursue healthy, safe, and productive lives.

However, while these points were made over and over in specialty disability listservs, websites, blogs and journals, there was no significant rebuttal from the disability community reported in the mainstream media.

We have no word on when the Circuit Court of Appeals will take up the case.

USA v Arkansas

The federal Department of Justice (DOJ) filed this suit in federal district court in May, claiming that Arkansas violates Title II of the ADA by refusing to serve hundreds of people with developmental disabilities in the most integrated settings appropriate to their needs.

Although there are significant differences between Arkansas’ developmental disabilities service system and New York’s, this case is important because several of the Arkansas practices and procedures that DOJ cites as evidence of illegal discrimination are exactly the same as those followed by NYS OMRDD. Here are the relevant points from DOJ’s complaint (in bold), along with the OMRDD equivalents:

“Most residents [of the state’s institutions], and/or their families/guardians do not proactively request a more integrated setting because the state does not properly educate residents, and/or residents’ families/guardians, on what community resources are available, or the possible benefits for residents of community placements.” (OMRDD staff routinely positively promote group homes and family care homes and deliberately disparage more individualized integrated models when speaking with consumers, families and guardians.)

“The state does not adequately assess whether . residents could be served in a more integrated setting appropriate to their needs.” (OMRDD simply assumes that all residents living in developmental centers or “special” facilities will be most appropriately placed in segregated congregate group homes, and that all persons already in the later facilities are in the most integrated settings appropriate to their needs.)

“The state does not properly educate staff at the [institutions] on how to appropriately assess a resident for community placement, what community resources are available, or the possible benefits for residents of community placements.” (At planning and discharge meetings the only option that Broome Developmental Center staff seem to be aware of is group homes.)

“[Institutional] staff typically tailor any assessment of a resident’s appropriateness for a community placement based upon their limited understanding of what community resources are available (or not available), rather than specifying what supports and services a resident needs in order to be adequately supported in the community.” (Broome Developmental Services’ written plan for moving people out of its developmental center states only that people will be moved if and when new group home slots become available for them. Staff members and advocates who call for more integrated settings are ignored.)

“For the few [institutional] residents the state identifies as eligible for a more integrated setting, the state does not develop adequate discharge plans.” (On at least four occasions that STIC knows about in the past two years, Broome Developmental Services failed to provide the most minimal requested supports to people who had a legal right to leave its developmental center and move into individual integrated community settings of their choice; the result is that all four of these people had very bad experiences. In the three cases in which STIC was involved, BDS publicly attempted to blame STIC instead of accepting responsibility for the failures of its own staff.)

“The state fails to properly evaluate individuals with disabilities for a more integrated setting before these individuals become residents of the [institutions]. Institutionalizing these individuals fosters their dependence on institutional supports, and erodes the skills necessary for community living.” (Despite decades of public policy pronouncements that OMRDD was actively discouraging placement in its larger institutions, until this year it was actually quite easy to get someone admitted to Broome Developmental Center; all it took was an articulate and impassioned middle-or-upper-class family member screaming “Crisis!”. The only reason such admissions have stopped this year is because Medicaid authorities have cited BDS for serious violations of health and safety regulations, especially involving investigating and appropriately responding to serious incidents, and therefore BDC is forbidden to take new admissions until further notice. The state also continues to send people with behavioral issues or dual mental-health/developmental disability diagnoses to its “special” institutional settings instead of making a serious effort to support them in the community.)

“The state fails to provide services in the community in sufficient quality, quantity and geographic diversity to enable individuals with developmental disabilities to be served in the most integrated setting appropriate to their needs.” (Thousands of people with developmental disabilities across New York are on waiting lists for various individualized integrated services and supports while OMRDD continues to budget the vast bulk of its available new funds to expand segregated congregate programs; see AccessAbility, Spring 2010.)

“The state has not conducted an adequate assessment of the needs of its developmental disability service system, including, particularly, those services necessary in order to provide services to all [institutional] residents in the most integrated setting appropriate to their needs” (OMRDD has refused to provide data on the extent to which it spends public funds on segregated residential facilities and how many people are in them to the state’s Most Integrated Setting Coordinating Council, which is chaired by OMRDD Commissioner Diana Jones-Ritter. The agency has a one-size-fits-all plan to move people out of developmental centers into group homes.)

“Individuals with a developmental disability and a history of challenging behaviors face a particularly acute shortage of community service options.” (STIC’s innovative program to provide behavioral support consulting services is woefully underfunded and cannot meet more than a small portion of the demand. OMRDD made available only an unrealistically tiny amount of Family Support funds for such services this year, and is proposing only a minimal expansion of them for the next fiscal year. In recent months a child with autism and significant behavior issues was forced into a group home after his parents struggled unsuccessfully for years to get adequate in-home support services from Broome Developmental Services.)

“The state does not provide short-term crisis stabilization services in the community in a sufficient quantity or geographic diversity to serve all qualified individuals who require these services. Many admissions to the [institutions] start as respite admissions that become regular admissions. These residents remain confined to the [institutions] because there are insufficient crisis stabilization services in the community to address their short-term emergent needs and to respond to those needs with additional support on an as-needed basis.” (Broome Developmental Services and OMRDD have consistently ignored repeated requests for short-term crisis-intervention and respite services in this community for two decades, instead insisting on maintaining a narrow focus on constructing more segregated congregate residential facilities. During this period, many people have been admitted to the developmental center “temporarily” and have languished there for years.)

“Many individuals with developmental disabilities are segregated in the [institutions] for no reason other than that they are waiting for funding to become available to support their placement in a Home and Community Based Waiver slot under the federal Medicaid Waiver program.”. (Ditto. And for the first time ever, OMRDD is proposing to cap the number of waiver participants.)

“The wait list moves at an extremely slow pace, with most people waiting several years for funding for community based services. Individuals currently at the bottom of the wait list will likely wait more than a decade to receive community services.” (Double ditto.)

Have we all moved to Arkansas?

National Disability Advocate (and Attorney) Steve Gold advises disability activists in states where things are similar to Arkansas to get in touch with disability rights legal defense organizations. As he says, “This Arkansas complaint should be the first step in a cascade of other lawsuits, but only if disability advocates on a local and state level take the lead.”

Life or Death: Out of Your Hands?

For many years, New Yorkers with disabilities could rely on the fact that state law prohibited doctors or family members from “pulling the plug” on them without their consent when facing serious medical problems. As of March 2010, that protection for your life no longer exists.

The “Family Health Care Decisions Act” brings New York State law into line with that of most other states in permitting doctors or family members to make the decision to let you die if you get into a situation where you can’t communicate.

We’ve always urged people with disabilities to carry written instructions for how they want medical emergencies to be handled, and to choose a trusted health care “agent” to ensure that those instructions are carried out. Now it ’s not just a good idea. Now it’s ESSENTIAL. If you don’t have those instructions, and an agent to ensure they’re followed, you could get hit by a car, choke on your hot dog, or catch a serious case of pneumonia, and if you’re unconscious and fall into the hands of one of the many thousands of doctors who believe that having a disability automatically means you have a “low quality of life”, you could be allowed to die.

People always misunderstand this issue. It’s not about slowly sinking into death after a long illness. Nobody seriously argues that in such cases, there doesn’t come a time when there’s no point in continuing to provide active treatment. The problem lies in hardened negative attitudes in the medical profession about chronic disabilities. These people don’t care what you say or think. If you have a disability, they think you’re deluded when you say you have a good life. And if you fall within their sphere of influence, they will harangue and harass your family members to let you die, and they will delay and withhold treatment from you in order to bolster their case.

It used to be that if they wore your family down it didn’t matter: New York State would not permit anyone to make that decision for you. Now if your family member gets tired of fighting, s/he can be appointed as your “Surrogate” and have you starved to death or your breath cut off. In fact, under this law the doctor herself can appoint herself as your surrogate; all she has to do is get one colleague to concur—and you know how these people stick together. Surrogates are supposed to make decisions in line with what they know about your personal wishes, but if they know nothing, as will frequently be the case in a life-threatening emergency where time is of the essence, they can just do whatever they think is in your “best interest”. There are thousands of doctors who think death is in the best interest of any person with a significant chronic disability.

The only way you can protect yourself now is to write out your instructions for what to do in the case of a life-threatening emergency, and get a formally-designated agent to hold them for you.

Here’s a good place to learn about health care agents:


You can get the required forms and instructions for New York State here (it’s a PDF document so it may take a while to download):


Please: Don’t ignore this, and don’t put it off. Your life is already in somebody else’s hands.

No Bus, Make a Fuss

Broome County Transit’s proposed cutbacks on bus service have been well publicized. What has not been made clear is how harshly this will affect people with disabilities.

Public transit in our region is used disproportionately by low-income people to go to work or shop. Although some of the routes proposed to be cut are called “shopper’s specials”, these routes are still used by many people to get to work. Many people with disabilities work in the big-box stores and restaurants on Vestal Parkway, one of the areas where service is proposed to be cut. When this point was brought to the attention of BC Transit Commissioner George Bagnetto, he allegedly said, “People should just adjust their work schedules.” Despite the fact that he started out as a bus driver, Bagnetto is obviously completely out of touch with the needs of low-income working people in this community.

It should be obvious to most people that low-income people working in service or manufacturing jobs don’t have “flex time”. What is less obvious to many is the deep extent to which people with disabilities are dependent on public transportation. Although it is tiring and unpleasant, many nondisabled people can walk a mile or two to work if they absolutely have to. We aren’t saying they should, we’re saying they can, in a pinch. Low-income people who can’t walk, or who have intellectual or cognitive disabilities that make following a complex route impossible, must rely on public transportation to get them to and from their jobs on the schedules required by their employers. They have no alternatives. If you can walk, you’ll be worn out by the time you get your shopping bags home from the store. If you can’t walk for whatever reason, you won ’t be getting any bags home at all.

There is a recession and a public-funding budget crisis. However, BC Transit has raised fares twice in the past two years, each time telling the public that the increase will prevent the need to cut routes. What have they done with that money? It is not credible that following these increases, it has really become necessary to cut the lifelines of so many people—people who will lose their jobs as a result. People who are out of work, and retail businesses that see fewer customers because they can ’t get to them, will pay fewer taxes into the county coffers.

By the time you read this, the public hearings on the issue will be over. However, the cuts won’t take effect until June 28, so there is time to stop them. Contact County Executive Barbara Fiala and your County Legislator and tell them why these cuts must not be made. Have your employers and your favorite storekeepers do the same. Contact information is available at:


Force Policies, Not People

“Kendra’s Law”, or the Assisted Outpatient Treatment Act, is a NYS law that is up for renewal this year. There is consensus support in the disability community for renewing it for another five years while more data on its effectiveness is collected.

The law was enacted in 1999 in response to the death of Kendra Webdale, who was pushed in front of a New York City subway train by a delusional person with mental illness. The law was portrayed as a way to protect people from dangerous, out-of-control mentally ill people who allegedly refuse to cooperate with treatment, by forcing them to take medications and accept supervision. However, the man who killed Kendra Webdale was an impoverished person with no medical insurance who repeatedly sought treatment and was denied. He was kicked out of no fewer than three hospital emergency rooms while trying to get help because he couldn’t pay for treatment.

The law provides for a legal process by which a person who is considered to be a threat to themselves or others by multiple professionals can be forced into “outpatient commitment”. They will be required to take medication and if they refuse they will be institutionalized. They also receive case management, ongoing supervision and other supports to assist them to recover from their illnesses.

The law was enacted temporarily and required that research be conducted on its effectiveness before it is made permanent. It was renewed, again temporarily, in 2005. Most experts agree that the law has been effective in helping people with severe mental illness. However, many people argue that this is not because the law forces people to accept treatment, but because it forces the state to provide and pay for it.

A troubling fact is that it appears to be applied far more often to people of color than to white people, even within the same communities, and far out of proportion to the percentage of non-white people living in those communities. Essentially, if you ’re white and mentally ill, you’re more likely to be considered “cooperative” and to have access to services. If you’re not white, you’re less likely to have insurance or access to services and more likely to be judged “uncooperative”.

Probably the most problematic aspect of the law is that the studies of its effectiveness in treating mental illness so far have failed to compare it to voluntary programs. In other words, there is evidence that people with mental illness who get good ongoing treatment and support do better than those who don’t. However, there is no evidence that forcing people into treatment works better than simply making high-quality voluntary treatment readily available to them.

STIC does not approve of forced treatment for people with mental illness. We do support forcing state government to provide adequate integrated community services to people with mental health disabilities, though. Because Kendra’s Law does that, we reluctantly endorse another temporary extension, but five years is too long. Two is plenty. Enough data already has been collected to compare the effectiveness of forced treatment under the law with available data on voluntary treatment, and to determine why the “force” element gets applied so much more often to people of color. Any extension legislation should mandate that definitive reports on these issues be completed within one year, and give the state one more year to develop plans to respond before the law expires again.

Autism Insurance and New York State:
What Possibly Could Go Wrong?

Important things are happening in New York State concerning autism insurance legislation.

There is a need to prevent insurance companies from denying coverage for appropriate medical treatments and services for people with autism. An effort to do so was begun with Assembly bill 6888 and Senate Bill 6123, which were introduced to the committees that handle insurance issues in both houses. Then, for no immediately apparent reason, these bills were held up and substitute bills, A.10372 and S.7000, were introduced. However, when you study the legislation and compare the differences you begin to see why the new bills were proposed.

Each bill would amend current insurance law in New York State. However vast differences exist between the new and old bills. A.6888 and S.6123 have more in-depth and detailed language than A.10372/S.7000. A.6888/S.6123 lists all services that would be provided under insurance law in clear and concise language, including not only services that may be specific for autism such as diagnostic and psychiatric services and behavior therapies, but also services that are commonly needed by people with multiple disabilities, one of which may be autism, including occupational therapy and physical therapy. It includes anti-discrimination language that prevents insurers from denying coverage of both specialized and generic services to people with autism. This makes it hard to fathom why A.6888/S.6123 would be replaced with A.10372/S.7000.

Comparing the two bills you would not recognize A.10372/S.7000 as a legitimate attempt at an autism insurance bill or even a bill created by the politicians of our state. In A.10372/S.7000 one of the first things noticed is the lack of attention to detail in the creation of the bill. For example A.10372/S.7000 states that the services covered will be those listed in guidelines issued by the American Academy of Pediatrics (AAP). This is far different from A.6888/S.6123, which clearly defines what services are covered. By using the AAP guidelines, A.10372/S.7000, could, and would, put an age cap on who would receive services. As well, A.10372/S.7000 removes anti-discrimination language included in A.6888/S.6123.

This leads into the most puzzling aspect of A.10372/S.7000. It assigns the Commissioners of the Office of Mental Retardation and Developmental Disabilities, the Office of Mental Health, and the Department of Health, and the Superintendent of Insurance, the task of promulgating regulations to determine what treatment and therapy options insurers will cover for diagnosis and treatment of autism. This is something, on many levels, that is baffling to the mind. Why would these organizations be given the power to determine what will and won’t be covered under insurance law? I have heard of nothing like this in law before and I don’t think I will again for a long time.

There is evidence that OMRDD is strongly under the influence of a specific philosophy of behavioral therapy known as “ Direct Trial Teaching”, also called the “Lovaas Method”, as promoted by Binghamton’s own Ray Romanczyk and his Institute for Child Development. During a recent local NPR radio call-in program on autism, Romanczyk remarked that it was pointless for adults to seek an autism diagnosis because “there are no services for them anyway.” This was false; STIC and other agencies provide a variety of integrated individualized support services for adults on the autism spectrum. They don’t include the Lovaas Method though, primarily because the most recent and sound scientific data on this methodology indicates that it isn’t very effective. However, this could explain why the A.10372/S.7000 language appears to regard autism as purely a childhood issue.

The Lovaas Method is carried out in sterile, “scientifically designed” segregated settings and involves teaching repetitive abstract tasks such as putting golf tees into pegboards. Unlike more effective strategies such as Positive Behavior Supports, it teaches no useful life skills or social behaviors, and children for whom it has been the only treatment typically have serious problems functioning in integrated environments.

OMRDD is already planning with a group called the Interagency Task Force on Autism what state-funded supports and services should be provided to those with autism statewide. The group includes staff of DOH, OMH and various other state agencies. Out of this has come OMRDD’s plan for segregated, congregate group homes for autistic children. Reportedly also under discussion is the creation of additional small institutional settings, such as residences for children who have been placed in institutions outside New York like the Judge Rotenberg Center (which uses electric shock to “treat” behavior issues) and conversions of ICFs into “short-term” (2 to 5 years) “Intensive Behavioral Facilities”. The group has also tasked itself with the creation of testing materials to determine whether or not a person has autism.

Why would New York create a law to give power to these state agencies not only to do as they please with the services they directly control, but to determine what services will be available to people who don’t have to rely on Medicaid-funded programs because they have private medical insurance? This is a question which I truly cannot answer for sure, but I can guess.

At press time, A.10372/S.7000 was getting a lot of support from well-meaning people who apparently weren’t aware that the bill would essentially permit private insurance companies to deny coverage for virtually any treatment for people with autism. As a result, S.7000 was picking up support in the Senate while S.6123 was stalled in committee. Hopefully by the time you read this there will still be opportunities to act. If you would like to know more about how to do this, please email peers@stic-cil.org or call (607) 724-2111 (voice/TTY) and ask for Robert Deemie.

Little MISCC Little MISCC Can’t be Wrong . . .
or Can It?

Okay, that’s a pretty obscure ‘90s tune by the Spin Doctors in the title. Whatever.

“Whatever” sums up many people’s attitudes toward the NYS Most Integrated Setting Coordinating Council (MISCC) ’s activities of late.

After getting people’s attention by finally actually releasing a plan with at least some more or less measurable goals and objectives—something it has been legally required to do for seven years—a few months later it generated a firestorm of eye-rolling when it published yet another “annual report”. This year’s report seems a bit more focused than previous ones, but it is still a collection of mostly self-serving, occasionally baffling, and sometimes inaccurate statements about what the various state agency members of the MISCC have done on their own and in spurious “collaboration ” with each other. Not to mention that it doesn’t seem to have been proofread.

The most remarkable things in this report come from VESID and the CQCAPWD (Commission on Quality of Care and Advocate for People With Disabilities).

VESID attempts to take credit for the activities and achievements of the state’s Consumer Directed Personal Assistance (CDPA) program and the Regional Resource Development Centers for the state’s Traumatic Brain Injury and Nursing Facility Transition and Diversion Medicaid waiver programs. These are effective programs that provide vital support services to enable tens of thousands of New Yorkers with disabilities to live integrated and productive lives. Naturally VESID would like to be associated with them. So what is that association? Most of these programs are operated by Centers for Independent Living (CILs), like STIC, which also receive some funding from VESID. The truth is that VESID’s share of funding for most of the CILs that run these programs ranges from less than 50% to less than 10%—and none of it is used for CDPA or the RRDCs. Those programs are provided and paid for through contracts with DOH, and VESID has absolutely no involvement with them at all. It simply collects service statistics on them, as it does for all CIL activities.

The CQC’s portion of the report similarly attempts to take credit for a multitude of disability-related programs and activities around the state. Although CQC does provide some funding for the Technology Related Assistance for Individuals with Disabilities (TRAID) program (for which STIC is a regional site), its involvement in other disability-related activities mostly consists, like VESID, of collecting reports and in some cases hosting meetings to discuss them. Meanwhile the CQC has largely abandoned its primary responsibility, which is to be an active and independent oversight agency, monitoring and investigating the activities of the state’s “mental hygiene” agencies—OMRDD, OMH, and OASAS—to ensure that the people in their charge are not neglected or abused.

While the mounting frustration and fatigue with the MISCC in the disability community is very understandable, we are faced with the unfortunate fact that the MISCC is the only venue where anything like a comprehensive policy approach toward disability issues gets discussed in New York. So we have to pay attention, and we have to continue to try to influence what it does.

What it’s going to do next is release its “final” “short-term plan” by the end of June. The draft plan was released late last year. Virtually all of the comments the MISCC received on the plan said the same things: It’s good that there finally is a plan; the draft plan is extremely short on specific details and measurable objectives; vitally important items necessary for the MISCC to achieve its purpose of maximizing community integration and participation for people with disabilities are missing from the plan; the plan does not reflect a coordinated response to issues and the various state agencies are continuing to go their own way, duplicating each other’s efforts in some areas and working at cross-purposes in others.

Disability advocates need to examine the final plan very carefully when it comes out. The MISCC has received a lot of criticism over the years. It is fair to say that virtually no respected individual or organization in the disability community has been happy with it. But MISCC officials have a habit of ignoring criticism, even when it is articulately and forcefully stated, not only in written comments but in-person at public meetings. They continue to plod forward, patting each other on the back and implementing their flawed and counterproductive ideas. That’s the problem. The MISCC is annoying but it is not irrelevant. When this final plan comes out, it is going to be implemented. If it sucks, disability services in this state are going to suck. We can’t afford to throw up our hands and say, “Whatever.” We have to respond in a forceful and unambiguous way, make them stop their plodding, make them turn and face us and understand that they won’t be allowed to get away with it.

Lukewarm Reform

The Patient Protection and Affordable Care Act of 2010 is what they called the “health care reform” law passed earlier this year. The most significant things in the law for people with disabilities are its prohibitions on lifetime dollar or service caps on coverage, and on refusals of coverage for people with “pre-existing conditions”. However, it will be a few years before those provisions take effect.

In the meantime, four provisions of the Act will allow states to offer more home and community-based services. None of them actually require states to do so, though they do provide some incentives. Quite frankly, we don’t see why these minimal programs are being received and promoted with such enthusiasm by some disability activists. However, here they are in all their questionable value:

1. Community First Choice Option

This option permits states to provide many services similar to those now available under Medicaid Home and Community Based Services waivers as part of their Medicaid State Plans. Those eligible would be people who are eligible for HCBS waivers now. As with other State Plan services, there would be no caps on the number of people served, no requirement to demonstrate “ cost neutrality” when developing service plans, and no waiting lists. The program can include paying transition costs for people moving out of institutions, including first month’s rent and utilities, deposits, and household supplies.

Essentially the same option has been available to states since the 2005 Budget Reconciliation Act; it’s called the 1915(i) program (see below). As best we can tell, only one state, Iowa, has gone for this optional program. The major new point is that if states opt for this now, they can get an additional six percentage points tacked on to the federal share of Medicaid to pay for it.

This might get some states to bite, but many politicians will call it a “new entitlement program”—which it is —and refuse to participate.

This is a far cry from the Community Choice Act, which would require all states to offer a similar set of services to anyone who is eligible for Medicaid-funded institutional services.

2. Removal of Barriers to Providing Home and Community Based Services

This would let states include more services under a State Plan 1915(i) program. This program has a cost-neutrality requirement like HCBS waivers do, and unlike the Community First Choice program. It is similar to waivers also in that it can be targeted to people with particular needs, though, unlike waivers, it must be available statewide and the number of participants can’t be capped. Income eligibility for this program has been increased from 150% of the federal poverty level to 300% of an SSI level of income.

Once again, this program is optional and right now only one state offers it. To the extent that raising the income eligibility threshold would increase the a state’s share of Medicaid costs for the program, that change would actually be a disincentive for states to adopt it.

3. Money Follows the Person Rebalancing Demonstration

This existing program, which is supposed to reward states financially for getting people out of nursing facilities, will be extended for another 5 years. Another $2 billion is appropriated to increase the federal share of Medicaid that is allocated for people served under the program. The program was originally conceived as a way to cover the extra costs to help a person set up a household and get more intensive short-term rehabilitation-type therapies when they leave a facility in order to prepare for a more independent and active life. However, as finally enacted it basically subsidizes state Medicaid bureaucracies, while providing some funds for outreach programs to recruit people who want to leave nursing facilities.

Its enactment in New York State was severely delayed by DOH. STIC’s outreach program is just getting underway.

4. Incentives for States to Offer Home and Community-Based Services as a Long-Term Care Alternative to Nursing Homes

States could get an increased federal share of Medicaid if they “rebalance” their systems so that they spend more Medicaid money on “community-based” services than on nursing facilities and ICFs. The more “unbalanced” a state is, the more percentage points their federal share will grow by. In order to participate, states must make “ structural changes”, including a “single point of entry” for long-term care services, a standardized assessment tool to determine functional needs, and “real” case management services for participants.

We don’t have any more details than that. However, the program as described immediately raises two red flags. First, states have been allowed to designate smaller segregated congregate residential facilities as “community based” under federal Medicaid reporting requirements for decades. If the definition is not changed to exclude facilities that are segregated and congregate, states could meet the terms of this program by downsizing and breaking up larger nursing facilities into smaller ones without changing what life is like inside them. Second, who says people seeking simple integrated community-based supports need or want “case management services”? Most of them just need personal attendants. They would find “case managers” intrusive, and the requirement would just inflate the cost of the program.

NYS Budget: Deer in the Headlights

This article is brief because there is virtually nothing to report. At this writing the budget is 50 days late and there is no sign that it won’t end up being 100 days late or more. Some behind-the-scenes discussions were happening between Paterson’s people and Legislative leaders, but as best we can tell, they are still mostly just standing like stunned deer in the road facing the headlights of a $9 billion budget deficit bearing down on them like the world’s biggest Peterbilt.

Advocates succeeded in getting the State Legislature’s leadership to denounce most of Governor Paterson’s worst disability-related proposals. They include cuts to SSI, caps on personal attendant hours of service (whether CDPA or “ traditional”), and fees for Early Intervention services.

Some state agencies are proceeding on the assumption that the Governor’s budget has already passed intact. They do this every year, even though no such budget has ever passed unchanged since STIC opened its doors in 1983. They tell people that their funds are cut, they start drawing up new contracts and regulations#8212;and then they have to drop it all when the actual budget comes out. One of the issues affected by this insanity appears to be Paterson’s proposal to pay higher rates for congregate facility-based Early Intervention services than for individualized home-based services. This idea had some support from some clubby parents who wanted their kids with disabilities to attend programs together, but was strongly opposed by most disability advocates on the reasonable grounds that it would result in services becoming completely unavailable to low-income rural families. We don’t think the state Department of Health has the authority to make these fee changes without legislative approval, but they are sure behaving as though they do.

Although it appears that we have scored some victories, the outcome is by no means clear. Support for our positions has been expressed by the Legislature’s leaders, but when they get serious about negotiations, past experience shows that all bets will be off. It may very well be necessary to re-fight all of the battles we’ve fought so far this year, with at least as much strength and militancy, to ensure that things come out all right. Please pay attention to our announcements and alerts and respond as soon as they arrive.

Community Programs

Farmers’ Market Access Program Begins
Second Year in Northern Broome County

by Tirzah Creel

Have you heard about the Farmers’ Market Access Program in Northern Broom County? Partnering with the Whitney Point Farmers’ Market, the Farmers’ Market Access Program assists homebound elderly and disabled members of the Northern Broome region with purchasing fresh, nutritious, local products from the farmers’ market. The Rural Health Network of South Central New York started this program in 2009 through a United Way Venture Grant. The program serves residents in the areas of Castle Creek, Glen Aubrey, Lisle/Marathon/Killawog, Maine, Triangle, and Whitney Point. Last year the program helped over 20 residents in these areas gain access to farmers’ market products and this year, 15 customers are already signed up! With farmers’ market season fast approaching, the Farmers’ Market Access Program is ready to begin its second season!

Customers are provided with several different options for purchasing farmers’ market products, depending on their personal preferences and needs. Customers can choose to be called on Wednesdays during the farmers’ market, at which time they can place a farmers’ market order for home delivery. Also, customers can request transportation to the farmers’ market, where they can do their own shopping. For those customers who visit the Northern Broome Senior Center on Wednesday mornings, Farmers’ Market Access Program volunteers are available to take orders, shop for customers, and then deliver orders to the Senior Center later in the day. If you or someone you know could benefit from the Farmers’ Market Access Program, please contact the Rural Health Network at (607) 692-7669 or


As more customers are anticipated, individuals interested in volunteering with the program are also encouraged to contact the Rural Health Network. Volunteers can call customers and help them place orders, provide customers with transportation to the farmers’ market, or deliver customers’ orders to their homes. At the same time, volunteers develop marketable and valuable skills, learn about local foods, and meet new people. They even have time to pick up a few things for themselves at the farmers’ market!


For Sale: Wheelchair ramp manufactured by EZ-Access Homecare Products. 29 in. wide by 10 ft. long, all aluminum, 800 lb. maximum weight limit, can be folded for ease in transportation, has non-slip surface. Purchased in November 2007, used about 10 times. Cost $982 w/tax. Asking $800. Telephone: (607) 729-4527.

For Sale: Bruno handicap seat: front passenger seat, dark gray, remote control. Lowers to almost ground level. Original cost: $8500. Used very little; excellent condition. Fits vans and mini-vans. Asking $2500. Call (607) 748-8937.


Tickets, Please!

by Kandi Stevens

STIC’s Job Connections Supported Employment program is proud to announce that it has recently been named an Employment Network under the Ticket to Work program. The program is part of the Ticket to Work and Work Incentives Improvement Act of 1999. This legislation was implemented to remove the concern that individuals with disabilities may risk a loss of health benefits in order to work.

The primary goal of the Ticket to Work program is to increase choice for individuals receiving Social Security disability benefits in the areas of employment, vocational rehabilitation, and many other supportive services.

This program is available to most Social Security beneficiaries, and those who qualify are issued a ticket and are referred to as “ticket holders”. In order to be eligible to receive a ticket, an individual must be between the ages of 18 and 65, and must receive cash benefits under Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI).

Once a ticket has been issued, beneficiaries may contact an Employment Network such as STIC directly, and begin to receive assistance with finding and maintaining a job. That’s right, you don’t have to go through VESID, CBVH or OMH for a referral.

For more information on obtaining a ticket, contact the Ticket to Work Beneficiary Hotline at (866) 968-7842.

For information on receiving supported employment services through STIC using a ticket, contact Kandi Stevens at (607) 724-2111 (Voice/TTY).

Brain Injury Conversation Day

June 25
9:30 am to 3:30 pm
135 E. Frederick Street, Binghamton
Light Lunch will be Served

Keynote Speaker
Pat Gumson

STIC welcomes Pat back to the Greater Binghamton Region. She started it all in 1988 (when she was Pat Greene) with our Head Injury Task Force, which resulted in the creation of the NYS TBI Medicaid waiver program. She helped administer that program for many years.
Q & A with Tim Feeney
Tim, an engaging and funny speaker, is a world-renowned expert on TBI and behavioral issues. He currently works with the NYS TBI Neurobehavioral Project, administered by STIC.
27 Years as a TBI Survivor
Kendrick Kemp
Kendrick is interning at STIC as he works on his MSW degree at Syracuse University.
Other Topics Include:

Horse Therapy - How it Helps the Body
Medication Information Session

Pre-Registration Required

Call Kendrick Kemp
(607) 220-7447

STIC or Treat

by Sara Cophagus

Hallow folks. I gravely considered the content of this article, and realized that due to its nature, it would be in my best interests to have it ghost-written by one with a bit more connection to the topic; thus you see the author above.

It came to pass last week, that as the clock struck midnight on the night of the full moon, a spirit visited my dreams to impart a vision. It consisted of foreknowledge of an event to take place in the gloomy catacombs of STIC on five separate evenings in October, the 22nd, 23rd, 29th and 30th, with the final evening being Halloween. I was chilled to the bone by the sights that slithered and shambled before me. Perhaps my words are being shaded by the intensity of the nightmare, but I can tell you that I was really spooked and am haunted to this day by the memories of blood and gore that stalk me. While I’d wraither not give it tomb much thought, I can only speculate on the chain of events that led to the dream. They must have been related to our need to raise money. Fundraising can be a scary undertaking, but we’ve developed a good skeleton crew to organize the activities.

As the witching hour ended and I awoke, I heard someone moan, “Heads will rollllll if you don’t attend this macabre event!”

Some will demonize me for writing such a punderful and in some places cryptic article, but I’ve put my heart and soul into it so it is going to print.

Mummies and daddies, bring your little devils to STIC’s inaugural, and fully accessible, STIC or Treat Haunted House in October on the dates listed above, from 5:00 pm to 9:00 pm. I can’t promise that they won’t be sneezin and coffin from the fog and dust, but I can assure you a fun-filled time, after which we’ll be goblin some snacks and drinking a cup of ghoulaid. It will be booootiful!

NYS DOH Nursing Home Transition and Diversion and
Traumatic Brain Injury
Regional Resource Development Centers at STIC

by Laura O’Hara

STIC has served as the Regional Resource Development Center (RRDC) for the Traumatic Brain Injury (TBI) Medicaid Waiver program in the Binghamton/Southern Tier Region since April of 2002. As reported in previous newsletters, STIC also has been serving as the RRDC for the Nursing Home Transition and Diversion Medicaid Waiver program (NHTD) since November of 2007. STIC is one of nine not-for-profit agencies statewide that were designated by the New York State Department of Health (DOH) to assist with administration of the waiver programs across the state.

Last year DOH released a request for applications that maintained the two waivers as separate and distinct programs, but combined the two Regional Resource Development Centers into one contract. STIC applied to renew our contract with DOH in order to continue to administer these vital programs. We are pleased to announce that in January of 2010 the contract was awarded to STIC and we will continue our work towards the deinstitutionalization of disabled and elderly individuals.

STIC does not act in the capacity of a direct service provider under these waivers but rather as contractor to DOH to serve as a single point of access for intake, establishing eligibility, enrollment, and ongoing authorization of waiver services. The RRDC also functions as a source of information and referral for people with disabilities and elderly people to all types of waiver and non-waiver community services and supports. By administering these waiver programs STIC not only prevents and terminates unnecessary nursing home placements, but also adheres to our roots in systems advocacy as these contracts put us in a unique position to provide feedback to DOH regarding any changes that should be considered to these programs to ensure they continue to meet the needs of the populations we serve.

Here is a list of services that eligible individuals may receive under the TBI or NHTD Waiver programs:

Daily Living Services:
Service Coordination
Home and Community Support Services
Independent Living Skills Training
Positive Behavioral Interventions and Support
Respite Services
Structured Day Programs

Environmental Adaptations:
Assistive Technology
Environmental Modifications

Relocation Services:
Moving Assistance **only available through the NHTD Waiver
Community Transition Services

Community Adaptation Services:
Community Integration Counseling
Peer Mentoring **only available through the NHTD Waiver

Keeping Well Services:
** the following are only available through the NHTD Waiver
Home Visits by Medical Personnel
Respiratory Therapy
Congregate and Home Delivered Meals
Nutritional Counseling/Educational Services
Wellness Counseling Services

Participants in the TBI or NHTD waivers will be active partners with their service providers to develop a service plan that both meets their current needs and sets forth a plan for achieving their goals for independent living.

STIC currently serves 244 individuals through the TBI Waiver program and 70 individuals through the NHTD Waiver program. We accept referrals from all sources, including individuals who wish to apply and their friends and family. If you would like more information about either of these programs please contact STIC today by calling (607) 724-2111 (voice/TTY) or emailing the RRDC at tbiresource@stic-cil.org or nhtd@stic-cil.org. You can also find information on these programs on the STIC website at:


New Faces

Amy Henry

I am pleased to be joining the team at STIC as the new Development Director.

I was previously employed at an architectural firm as a marketing associate. Our department (all two of us) also worked on public relations, business development, and client relationship management. Some of my tasks included writing proposals, press releases, and advertisements; coordinating events; developing and administering client surveys; and creating marketing materials such as brochures and newsletters. I also spent several years in broadcast journalism as an assignment editor/senior producer.

I obtained a Bachelor of Arts in Communication and Journalism from the University of Maryland. My hobbies include reading, yoga, spending time with my family, and working in our community garden plot.

I am excited to be part of this wonderful organization and look forward to a career in which my work benefits others. Thanks for the warm welcome!

Teresa Tyner

Teresa has failed to provide a requested bio for two issues in a row. She works for Classy Fanagan in STIC’s HR (Hairy Racehorses) Department, where her job involves harassing the staff to turn in their Racing Forms and Tip Sheets. She also takes side bets and will send her buddy “Olaf” to collect late payments.

Teresa has a degree in doily-making, which she obtained by sending two first-class postage stamps and a Cheerios boxtop to the Acme College of Career Manufacturing in Oatmeal, Arkansas.

Teresa lives with her mother, her dog, three donkeys, two goats and a gila monster in a van down by the river. For entertainment she enjoys skimming old vinyl LPs into the sides of rotting outbuildings like Frisbees and watching them stick.

Andrea Webb

I am the new Quality Management Specialist at STIC. I am a Binghamton native. I am the youngest out of 4 children. My sign is Cancer.

I am very outgoing and enjoy working with people and being active in the community. I sit on the board at Citizen Action, which is very involved in the upstate area with education, health care, voter registration and other social issues.

I have a degree in Business Management and Sales. For the past 8 years I co-owned my own business, called A-G-C Beauty Supply & Fashion.

I came to STIC because I wanted to work for an agency that is very involved and respected in the community. I enjoy working at STIC; the staff here are very nice and professional.

Thank you for the warm welcome.

Late Arrivals

Margaret Hulburt is our new NHTD RRDS.

Diana Salvemini has joined our CDPA program as a clerical worker.

Nicole Sanders-Rinker is our new TBI Assistant RRDS.

These folks joined us just as AccessAbility went to print. We'll have more on them in our next issue.

Summer 2010
Issue No. 99

Epic Fail
AccessAbility Masthead
Autism Insurance and New York State:
What Possibly Could Go Wrong?
Courts Watch
Force Policies, Not People
How Do You Spell Power?
Life or Death: Out of Your Hands?
Little MISCC Little MISCC Can't be Wrong...
or Can It?
Lukewarm Reform
No Bus, Make a Fuss
NYS Budget: Deer in the Headlights
Farmers' Market Access Program Begins Second
Year in Northern Broome County
Brain Injury Conversation Day
New Faces
STIC or Treat
Tickets Please!