Ten Years After

by Maria Dibble

Disability advocates this year are noting the tenth anniversary of the US Supreme Court’s Olmstead decision, but they aren’t celebrating. The last decade has been fraught with broken and/or unfulfilled promises, grave disappointments, and most importantly, the continued incarceration of people with disabilities in institutional settings such as psychiatric hospitals, developmental centers, nursing facilities, and group and adult “homes”.

The landmark Olmstead decision, filed on behalf of two women residing in a Georgia psychiatric facility, found that people with disabilities have the right to live in the most integrated community setting. It was like the “shot heard ’round the world” for disability advocates. We began to have high hopes that states would now see the light—or be forced to, anyway—and would start to move people into the community. We certainly believed that we ’d be much farther along than we are after ten long years.

This isn’t just my belief and my frustration speaking; they are shared by the highly respected Bazelon Center for Mental Health Law, known for its advocacy on behalf of people with mental health disabilities. They recently issued a very critical report, Still Waiting ... the Unfulfilled Promise of Olmstead. The report states, “Besides being plagued with lingering prejudices against the inherent abilities of their clients, state systems have seen integration thwarted by powerful interests vested in preserving the status quo at the expense of the civil rights of people with mental illnesses. These interests include nursing home administrators and labor unions representing workers in institutional facilities. ” While this specifically refers to people with mental illness, it is equally true for people with developmental and other disabilities as well.

While the Bazelon report, disability advocates around the country, and even some state and federal officials agree that services in the community are, in the aggregate, much less expensive than those in institutions, and while most people believe that individualized community placements offer a much higher quality of life, nothing is happening to change the status quo. Policies aren’t being revised, plans aren’t being implemented and bureaucrats and politicians aren’t putting their money where their mouths are.

For nearly 15 years we’ve pushed for federal legislation, now known as the Community Choice Act, that would reform the long-term care system and give people the choice of living in the community with appropriate support services. Our hopes soared to their highest pinnacle when candidate Barack Obama committed to passing the CCA, and were crushed to their lowest depths when now-President Obama reversed his position.

We were ecstatic when, in 2002, we got legislation passed in NY to establish the Most Integrated Setting Coordinating Council (MISCC), which required state agencies to work together to develop a plan to ensure that all New Yorkers with disabilities get the support services they need in the most integrated real-life community locations. That plan was to have been in place by December 31, 2003. Almost seven years later, we have seen a couple of “reports” but have yet to see a plan. Fear not though; quarter after quarter the MISCC meets and its dominant state agency members pat themselves on their backs for the many activities they are conducting, as they continue to violate the law that brought them together. Not only do they ignore the mandates in the MISCC law, but two of these very same state agency commissioners are engaged in fighting a lawsuit that would force the state to transition people with mental health disabilities from large adult “homes” (some with 200 to 300 inmates) to individualized supported living in their own homes. The Commissioners of the state Office of Mental Health and the Department of Health sit on the MISCC, which is supposed to develop a statewide plan for transitioning all people with disabilities into the most integrated setting, and yet they are fighting a suit so they can continue the practice of segregation. So which is it, Commissioners Hogan and Daines, most integrated setting or most convenient setting?

Closer to home, since last December we’ve asked for a copy of Broome Developmental Services’ Community Placement process at least 4 times. According to a memo issued in 2007 by the OMRDD Central Office, this process is supposed to be in place in each regional DDSO to ensure that people in the state’s huge developmental centers have specific plans to move them out into the community. The memo also states that a document that fully describes the local DDSO’s process is supposed to be freely available to people with disabilities and advocates. We’ve been given copies of the Central Office memo, not the DDSO’s local process. Other advocates around the state have had no better luck in getting this document from their DDSOs. For years, families in our region have pleaded for temporary respite, crisis intervention, and other community-based services, yet instead of getting what they want, they are being offered an eight-bed group home for teens with autism.

OMRDD’s Commissioner chairs the MISCC, and her agency is also fighting a lawsuit brought by disability rights advocates to obtain information about possible instances of abuse and neglect of inmates in developmental centers. Is this in the spirit of Olmstead, Commissioner Ritter?

Promise after promise broken, law after law violated, court decision after court decision ignored, and yet nobody seems to care. We care about who is the latest winner of “American Idol” and the latest scandals in Hollywood, or about what kind of car our next door neighbor is driving, but we can’t seem to muster up the energy to care about the tens of thousands of people languishing in nursing homes and other institutions. Why is this?

Some argue that if we move people out of institutions, jobs will be lost. Others worry that then there won’t be money to maintain the “bricks and mortar” we spent so much to put into place. Others whine, reforming our long term care system is too hard, too complex and will take time. What it seems to really come down to in the end is that somebody might lose money, and the almighty dollar is more important than any argument we can bring to bear. Should your son or daughter have to be institutionalized to preserve the job of another, or to pay the utilities on an obsolete developmental center that nobody but the bureaucrats have a vested interest in maintaining?

And why does money trump people? One reason, though by no means the only one, is that we don’t believe that “those people” are capable of living independently in the first place. We somehow think of them as less important, or even as lesser humans. Honestly, most of us wouldn’t tolerate our pets suffering the abuse, neglect and poor quality of life that many people with disabilities are forced to live with on a daily basis. Every time a horror story is aired in the press about something awful happening at an institution, we cringe, then tell ourselves, it’s just that one place. Isn’t that awful? but it’s the exception not the rule. Wrong! For every story we hear about in the media, there are dozens more that never see the light of day.

We had such high hopes for Olmstead. We thought it would finally be the tool that advocates could use to free children and adults with disabilities from their prisons. Sadly, we are really not much farther along than when the decision was issued. We have lots of research upholding the rightness of the decision, reports that repeatedly demonstrate that when you segregate people in any type of setting it is a recipe for disaster, as well as a tremendously inefficient use of funds, yet we do nothing.

I know my words will anger many who read this. You who work in institutions and aren’t abusing folks—and there are many of you—kind, caring and considerate people, doing what you think is good for the people you serve, may be offended, and that isn’t my intention. But, ask yourself this question: Would you want to live in the group home or developmental center where you ’re working? If not, why not? I can hear some of you saying, “But that’s different. I can take care of myself. ” Well, your dog or cat can’t take care of itself but would you want it living in a pound or kennel for the rest of its life? And no, I’m not saying people with disabilities are animals. Quite the contrary. What I am saying is, that if it isn ’t good enough for you, and is unthinkable for your pet, why is it okay for a child or adult with a disability? In a phone conversation I had with OMRDD Commissioner Ritter last spring, she made the statement that she wouldn’t mind living in some of the group homes she has seen; she said they are “beautiful”. Well, I’m not debating their aesthetics, I ’m opposed to the lifestyle forced on those who live there. Eat when you’re told, sleep when you’re told, get permission to leave, get permission to have a friend visit, need I go on? It’s more regimented than being in the military, because at least in the military, you occasionally get leave.

I could have been one of “those people” living in an institution but for the insight of my parents. My twin brother and I were born blind. “Professionals” urged my parents to “put them away and forget about them because they won ’t amount to anything anyway.” My parents said “No!” and so here I am. Their belief in me, and their way of looking at disability as just a part of a person who was otherwise the same as anybody else, their refusal to accept “I’ m blind so I can’t” as an excuse, was critical to my success. I implore you to rethink your life-long beliefs. Try to see things from the perspective of that institutionalized person who is told what to do and when and how to do it, who makes few if any choices for herself. Wouldn’t it be better to take the money being used to keep them locked up ($1.2 million a year per person for the privilege of living at Broome Developmental Center), and use it instead to create a truly individualized living situation in the community? $1.2 million is a lot of money! For half of that, we could build them a house, buy them a car and hire a driver, and provide them with as much support as they want and need, and probably still have some left over.

It can be done! We can pass CCA! We can have an Olmstead Plan in NY! We can move people into the community! But we have to step up our game and begin to use the legal tools available—the tools that the Olmstead decision provided—to make it happen.

Bad Weather?

If the weather is bad, call 724-2111 (voice/TTY) to make sure we’re open. The answering machine will explain why we’re closed. Listen to the entire message since we sometimes ask you to call back to check later in the day. If we’re going to be closed, the message will say so by 7:30 am. For Deaf consumers, there will be a generic TTY message saying we’re closed. This message is always the same no matter why we’re closed.
September 2009


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Tag! You’re it!

By Darlene Dickinson

There is a saying that when we become adults we must put aside childish things. Unfortunately, it seems that the bureaucrats in the Broome County Mental Health Department (BCMH) and Broome Developmental Services (BDS) have never heard this axiom or they simply choose to ignore it. I do not want to mislead anyone by focusing on local issues without mentioning the statewide pervasiveness of denying services to people who have both developmental and psychiatric disabilities. Although BCMH is part of county government, some of its programs are funded by the state Office of Mental Health, which bears ultimate responsibility for them. BDS is the local OMRDD Developmental Disabilities Service Office, and is answerable to that state agency. The purpose of this article, however, is to shed some light on the serious problems that people with disabilities, families and service providers are having with BCMH and BDS.

I’m sure that most people have played the game of tag as children. The rules are simple. One person is chosen to be “it”. The other players scatter about a back yard or field while the chosen player chases them, attempting to touch them while shouting, “Tag! You’re it!” The tagged person must then assume the role of “it ” and try to tag another person. I realize it is ridiculous to think of state and local bureaucrats who are paid to serve people with disabilities as engaging in such activities. Nevertheless, when people with psychiatric and developmental disabilities desperately need these agencies to collaborate and provide services that meet both needs, BCMH and BDS immediately initiate the “Tag Protocol”.

What happens when dually diagnosed adults, children and their families fall victim to the Tag Protocol? Far too often the absence or inadequacy of necessary services leads to unwanted institutionalization. The following stories are just two examples of the complacency on the part of OMH and OMRDD leadership in our community and at the state level.

Matt, age 9, has multiple developmental and psychiatric diagnoses including an autism spectrum disorder, intermittent explosive disorder, mood (possibly bi-polar) disorder and others. Currently, he lives at home with his parents and siblings. Matt’s mother desperately wants to keep her son with her family. She does not want to place him in an institution, but the constant struggle to obtain essential services to keep Matt and her family safe at home may force her to do so.

Matt has a long chronic history of aggression, violence, and homicidal and suicidal ideations resulting in frequent psychiatric hospitalizations. Nevertheless, BCMH has denied the family access to mental health services because the child is being served under the OMRDD Home and Community Based Services waiver. Their reasoning is that Matt can get psychiatric services through the BDS Article 16 clinic. Unfortunately, the family tried to use this service but found it inadequate for their needs. The final straw for Matt’s parents in deciding to seek mental health services elsewhere was the nurse practitioner’s refusal to prescribe a psychiatric medication strongly recommended by the child’s pediatric neurologist.

When Matt’s parents began actively pursuing services through BCMH providers they were turned away. They were told that OMRDD was obligated to provide such services It is true that OMRDD is woefully delinquent in offering the kinds of services that BCMH does provide to families in their homes, such as a parent partner who can assist the family in setting up team meetings, going to appointments and troubleshooting, a Flex Team that can provide intervention and advise parents on how to deal with behavioral issues and, most importantly, in-home respite. Nevertheless, the refusal of these services had disastrous results for the family and for Matt.

This spring, Matt was taken to CPEP several times and each time he was sent home in spite of his mother’s pleading that her son had described in detail how he intended to murder his family and kill himself, and despite his violent rages and the constant danger to the other children in the household. Finally, the parents were forced to refuse to take Matt home during his last visit to the crisis center. This resulted in a temporary placement at Wilson Hospital’s pediatric unit until a bed at the Wyoming Conference Children’s Home was available. Matt was then placed there for a 90-day evaluation which was inconclusive and has resulted in no further psychiatric services for Matt and no further support for his family.

In the second case, John, an adult, had lived at two OMRDD developmental centers for a total of 13 years. John has multiple psychiatric diagnoses including bi-polar disorder with psychotic features, major depressive disorder, generalized anxiety disorder, and intermittent explosive disorder. He was a youth offender and had been court-ordered to the first developmental center to undergo treatment and counseling for his offense. He spent 9 years at that facility, then was transferred to Broome Developmental Center where he spent another 4 years before going to a state-operated group home.

After several petitions for additional court-ordered retention, BDS had no grounds to pursue another. John was compliant with his “treatment” and had made significant progress. He had repeatedly stated his desire to leave the facility and the group home to return to the community, but BDS did nothing to assist him with this goal. When his last court retention date ended, John again stated his desire to leave. He had asked for a referral to STIC’s Community Integration Advocacy program for independent living skills training but was only referred three weeks prior to his expected discharge date. John spent 10 days at the group home after his retention date had expired, but when an opportunity to share an apartment with an old acquaintance came up he jumped at the chance to leave and gave the staff his written 72-hour notice.

I took part in the discharge meeting by phone and found that very few provisions for community-based services were made. To my knowledge, at no time did the team talk to John about visiting the apartment. The only assistance offered at the meeting was a list of homeless shelters and food pantries. The team asked me if I thought they should apply for the Home and Community Based Services waiver—an obvious choice. But the treatment team has 30 days to submit the waiver application to the Regional Center, which can then take a few weeks to review and approve it.

In the meantime, an adult who had never been on the streets or in the community without staff supervision suddenly found himself alone. The apartment was infested with cockroaches and was a den of drug-related activity. John was terrified and called his sister for help. In doing so, he went from the frying pan into the fire. As happens in so many cases, John’ s sister began taking advantage of him, using his SSI benefits to pay all of her bills and putting him into a very stressful environment. He was receiving no psychiatric services at the time.

As his mental illness progressed, John stopped taking his medication and began to quickly spiral downward. He began isolating himself and having paranoid delusions. Eventually, he committed another criminal offense. Prior to his arrest, John was taken to CPEP where he spent one night. I urged a staff person at the crisis center to admit him to Binghamton General Hospital for further evaluation and treatment. I explained that John had been found cutting paper with a large knife and had asked his brother-in-law to take it from him because he was afraid he would hurt himself or his family. His sister also told me that John had started cutting himself again. When I explained this to the staff person, however, she said that John’s willingness to give up the knife showed “rational judgment and good decision making ability”. She said that people cut themselves for a number of reasons, but this was not a life-threatening activity. After one night at the hospital John was released into the care of Adult Protective Services.

Upon learning of John’s arrest, BDS immediately suspended all waiver services, stating that his OMRDD eligibility was in question due to a score of 82 on an IQ test that was completed several years before his discharge from the group home. It seems that after 13 years of incarceration in OMRDD facilities, John was suddenly cured! He was no longer developmentally disabled!

John was eventually convicted of a misdemeanor and spent 9 months in the Broome County Correctional Facility, where his medications were reinstated. After his release, I referred John to the Single Point Of Entry Committee for mental health services. I felt his psychiatric needs far outweighed his need for OMRDD services. At the SPOE Committee meeting to discuss John's disabilities, needs and appropriateness for mental health services, BCMH Commissioner Art Johnson's right-hand man, Bob Carter, appeared to be infuriated that I had not insisted that John's public defender ask the judge to court-order BDS to re-admit him to the developmental center. I explained that this would have been a life sentence for a crime for which a non-disabled person would serve a maximum of one year in jail. This was irrelevant to Mr. Carter, who flatly stated that “OMRDD was the last agency tagged" and was therefore responsible for John. While I agree with this, I also hold a strong conviction that John could benefit greatly from services from both BCMH and BDS and that he does not deserve to be bounced between the two agencies like a ping-pong ball until he is dropped without any services at all.

This is, in fact, what has happened to John. At present, BDS is pursuing actions to deem him ineligible for OMRDD services because he is no longer developmentally disabled. BCMH has denied all services to him because, in spite of numerous psychiatric diagnoses, his last diagnosis—by a psychiatrist who met with him for a total of 15 minutes—was “ mood disorder not otherwise specified”. The SPOE Committee determined that his mental illness was not significant enough to warrant intensive case management or any other services.

These stories sharply illustrate the broken system in our county that continually fails those who most need its help. Why do these bureaucrats insist on evading their obligations to these people and families when it would be so much easier to collaborate to provide assistance? Their claim that people can only get services from one agency or the other is false. A Memorandum of Understanding (MOU) between the two state agencies says people with dual diagnoses may choose services from both the OMH and OMRDD systems so long as the services are not the same. For example, a person cannot receive both Medicaid Service Coordination, an OMRDD service, and Case Management, an OMH service. They can, however, get complimentary services that would not constitute a duplication of Medicaid billing. We know these bureaucrats are aware of this MOU. Why don't they follow it?

A New Waive?

In June the federal Centers for Medicare & Medicaid Services (CMS) said it plans to make big changes to the rules for the Medicaid Home and Community Based Services (HCBS) waiver program. Two changes were proposed. First, states would be allowed to target waivers to more than one disability group. Second, CMS wants to create “stakeholder processes” to define the term “home and community based”.

Currently states can target HCBS waivers to one of three disability groups: people with mental retardation and/or developmental disabilities; people with mental illness; and people who have physical disabilities and/or are elderly. This separation creates big problems for people whose disabilities cross those lines. While it’s perfectly legal for people to get services from more than one waiver, this is not well understood by state officials; in fact some of them insist that it is not allowable. But even if NY freely allowed people with multiple diagnoses to get services from different waivers, they would still have to contend with miscommunications, procedural disagreements, and delays caused by multiple separate administrations for waiver services.

That’s the best-case scenario. As we all know, things are much worse than that in NY. People who have both developmental and mental health disabilities, or developmental and substance abuse disabilities, or physical and mental health disabilities, often can’t get services from any of the waivers they are eligible for, because the different state agencies that administer the waivers shuffle them back and forth, claiming that the person’s “ primary diagnosis ” isn’t their thing. “Primary diagnosis” is not an objectively measurable fact. It is nothing more than an opinion—usually the opinion of a state agency employee who has been told not to accept anyone that they can send to another agency. After the famous “People First Forums” in 2007, when the state agency heads were barraged with complaints about this, they announced that they “got the message”, that it was going to stop, that they were bloody well in charge, by God, and they were ordering their people to serve all comers. Yet a full two years later, very little has changed. This is because state agency heads rarely order anybody to do anything in ways that they can’t weasel out of, and even when they do, they don’t bother to go back and check up on the people who are supposed to be following those orders. If somebody outside the system tells them that somebody isn’t following orders, they assume the person making the complaint is lying.

So a single HCBS waiver that serves people with all disabilities based on functional need rather than diagnosis would be a very good thing.

We aren’t so naive as to believe that NY’s disability agencies are frothing at the mouth to create such a waiver, though. They have refused to merge the waivers they can combine—the Long Term Home Health Care Program, the TBI waiver, and the Nursing Facility Transition and Diversion waiver. And, apparently because nobody had the authority—or the guts—to tell OMRDD to stop cutting foster children off of its waiver, the state recently created an entirely new waiver called “Bridges to Health”, whose purpose is largely to serve foster children with developmental disabilities. No, we realize that bureaucratic turf issues and pure bullheadedness will mean that very little will change in New York if CMS modifies this rule.

At least, not immediately. However, being able to say that federal Medicaid rules don’t stand in the way of states combining funding and administrative resources to serve people with multiple disabilities will be very useful in court when people who are sick and tired of being jerked around decide to file a lawsuit.

CMS’s other idea is more problematic. They want a “stakeholder process” in each state to decide what “ home and community based” really is. They mean well. Their request for comments noted that too many people on HCBS waivers are in “institutional” or “provider-centered” settings. But you know who “stakeholders ” are, don’t you? They are anyone who can drive a stake through the heart of a bureaucrat who makes them mad— that is, people with the raw power to influence policy, for good or ill. People with disabilities aren’t “ stakeholders” here, because they have no real power. All they have is moral suasion, which is worth very little when big money is involved. The real stakeholders are the owners and operators of the “institutional” and “ provider-centered” facilities that CMS is concerned about, the state bureaucrats who pay them, and the public employee unions whose members work in them. So guess what will happen when these stakeholders are asked to decide whether waiver services can be provided in a 12-bed group home or a 100-slot segregated congregate day program or a sheltered workshop.....

... Exactly. Right now, CMS semi-officially frowns on segregation. But if an official “stakeholder process” says it ’s okay, people with disabilities who want real integrated lives won’t have CMS behind them anymore.

So STIC asked CMS to drop the “stakeholder process” idea and issue its own regulations. They should say that the only “home” is a real home: a place where the people who live there make all the rules about who lives there, who comes in and out, and what the people who live there do. If the people living there are minor children (who really should only be living in their families’ homes) or legally incompetent adults, then the families or guardians would make the rules. And “community based” should mean “in the real community”—that is, the same place where a nondisabled person would do whatever the person with a disability is doing that s/he needs help with. A segregated day program is not “community based”, but a real job site that was not created primarily to employ people with disabilities is. A “special” recreation program is not “community based”, but a real movie theatre, comedy club, or bingo hall is.

Unfortunately, CMS’s announcement made it clear that they’d already heard from a number of stakeholders, and they ’re running scared. So they probably won’t agree to issue definitive regulations. We told them, in that case, they should disallow facility owners and operators from any stakeholder process because it’s an obvious conflict of interest, destructive to CMS’s goals, to let the guy who owns a group home decide whether waiver services can be provided in group homes. We also said that state bureaucrats and family members should only be ex officio —non-voting—participants in the process, and that the majority of participants should be people with disabilities who use waiver services or would use them if their states had waivers for them.

We’ve seen some of the comments that have been submitted, though most won’t be available until after we go to press. Predictably, disability rights advocates like Steve Gold and ADAPT are saying what we’ve said, while facility operators like The Arc are saying, “Oh yes, we support these ideas in principle, but hey, you don’t really mean we might not be able to get waiver money into our sheltered workshops, 12-bed group homes and 100-bed SROs, do you?”

The most likely outcome is that each state will have a different stakeholder process. CMS will urge people with disabilities to get involved, and may even tell states, in a nonspecific way, that they must be involved. In some states—those with a history of truly listening to people with disabilities, like Kansas and Vermont—their voices will be heard. In states like NY, the process will be controlled by people with real stakes, as in gambling stakes, as in money; people with disabilities will have token representation at stakeholder meetings, or be sidelined on “ advisory boards”, and the facility operators, state bureaucrats, and public employee unions will get what they want, which is to continue to be allowed to segregate people with disabilities in residential and day program ghettoes while brazenly lying that they provide “community based services”.

Fortunately, there’s still the ADA and the Olmstead decision, which give you the right to receive services in the most integrated settings appropriate to your needs, and which says states must administer their funds, including Medicaid waiver funds, to make that possible. Those tools are there whenever you’re ready to pick them up and take them to court.

MISCC Meeting Mobbed

The July 6 meeting of the NYS Most Integrated Setting Coordinating Council (MISCC) was more of the same—only better.

There was the usual round of self-congratulatory announcements from the state agency members, and the usual lack of progress on creating a comprehensive plan to achieve the goal of getting people with disabilities into the most integrated community settings.

There was also the usual public comment period. However, the vast majority of speakers said that they wanted out of developmental centers and group homes and they need real, reliable individual supports in the community. One person with a developmental disability from our region made an articulate speech about wanting to get out of the developmental center and into her own home. Another—a woman with no intellectual disabilities who works at a Center for Independent Living like STIC —said she had been living with her elderly mother, who was no longer able to provide the physical assistance she needed, and because neither the county long-term care authority nor the local OMRDD office would provide appropriate in-home services, she was forced into a group home. Patricia Fratangelo, a MISCC member who is the Executive Director of Onondaga Community Living, a Syracuse agency that provides certified residential services to people with developmental disabilities without using a single group home, said she would be glad to provide consulting services to the DDSOs where these people live to help them figure out how to serve them. OMRDD Commissioner and MISCC Chairperson Diana Jones-Ritter was observed to be visibly embarrassed by these speakers. Two people with mental health disabilities told similar stories about the undesirability of OMH group homes.

Overall, observers reported that the public comment period created an overwhelming impression of rising dissatisfaction with the MISCC that the state agency members could not ignore.

Closing Down the Big House

At a meeting of Voluntary Agency Directors in August, Broome Developmental Services (BDS) Director Carl Letson announced that OMRDD plans to close Broome Developmental Center (BDC) in about two years. Residents, including those on the “Local Intensive Treatment” unit (also called the “Forensic Unit”), will be moved out. Letson asked for help from all the agencies. One agency representative remarked that this is an excellent idea but OMRDD’s system for providing community supports is not up to the task.

STIC agrees. The Home and Community Based Services waiver system, which would fund most of the needed services, creates huge bottlenecks. People can’t get on the waiver while in BDC, but it takes months to get the applications filed, approved, and services started. OMRDD allocates a very small portion of funds to waiver services, which its cumbersome regional process dribbles out bit by bit. For this plan to work, OMRDD must greatly increase waiver funds and open the spigot full-blast. It ’s hard to see how they can do it amidst major budget cuts, unless they move money from capital and facility operation budgets into waiver services—that is, unless the money truly follows the person. People leaving BDC will need places to live. Money is said to be available for transitional “step down” group homes. If this truly is time-limited, and people learn real independent living skills in them, and then move to truly integrated homes or apartments of their own, this might be okay. However, it won’t be okay if, after BDC closes and all the people are transitioned out, BDS faces budget pressures to convert the step-down facilities into permanent residences and keep them “backfilled”. We have also seen releases from BDC to the real community badly botched because services aren’t in place when the person walks out of the institution. For these reasons, fixing the waiver program and moving people directly to integrated supported living would be preferable, and much cheaper.

STIC Executive Director Maria Dibble told Letson that STIC is ready and eager to help, and we hope he will engage in serious discussions to resolve the issues.

Autism Regional Forum Gets an Earful

by Bob Deemie

In this article you will notice that I use the terms “autistic” and “autistics ” instead of “person with” or “people with autism”. This is deliberate because in the world of autism— there actually is a world—people who are autistic, across the spectrum, don’t think of themselves as “person with”. They are. It’s like calling a person who is deaf a “person with deafness”. Someone who is deaf would not appreciate this. This is because being deaf is part of their identity. The same is true of people with autism. They see and experience the world differently than everyone else so their disability is a part of who they are, it’s internalized, not an external part of themselves.

On August 12, STIC staff attended the Assembly Minority Regional Forum on Autism Awareness held by Assemblyman Clifford Crouch at Broome Community College. The forum was attended by various professionals and parents from around the region who work with and have autistic people in their lives. While those attending did not always have the same philosophy about autism services, everyone did agree on one thing, they want autistics to have as independent a life as possible.

The common themes were waiver related services (including Consolidated Support Services), school related services, insurance coverage for autism treatments, and services for autistic adults.

The focus for waiver related services is around being able to find services for the person and family who need them. A problem cited is that a service coordinator or other service provider could tell a family about these services but the services may or may not be open for the person to get into. This is an ongoing problem with OMRDD services, which are theoretically offered on the “menu” but aren’t always there to be used.

Related to waiver services, Consolidated Support Services (CSS) was another topic discussed. While OMRDD has a good program, they have diluted it with odd choices. For example, OMRDD wants Support Brokers to start training family members to do parts of the Support Brokers’ job. This is an odd choice because the family does not always have time to do this. A few examples of how CSS has been applied to autistics were given and how they are receiving supports in the community. As well, it was mentioned, applying CSS to a person living in a developmental center or group home could save the state considerable money.

Then there are services provided to students. More students are coming in who have an autism spectrum disorder diagnosis and school systems are not prepared. The students need services but programs are maxed out, so they wait to get needed services. Another problem that arises is a student who may need social skills help will get that help but also be required to receive other services like OT and PT which they may not need. This is a problem because the OT and PT could be applied to a student who needs them; but, because of government mandate, a student must receive all these services. A further important point is transition services in the school to mainstreamed education. Autistic children transfer from classroom to classroom, gradually becoming mainstreamed in the process. This is a difficult time so a recommendation to help with transitions within the school was proposed.

A strong point made during the discussion on schools was how those working with autistic students do not always have the necessary training. It was mentioned that many teachers and staff know little about autism and need further training. However it was also stated that through state legislation funding is being appropriated so the necessary training can be provided.

Insurance coverage for autism treatments was another topic of interest. Insurance plans may cover the cost of getting diagnosed, but not the cost of therapies, or vice versa. One father said he was a county employee and his health insurance wouldn ’t cover the cost of a therapy he wanted for his son. He handed out flyers stating the reasons for denial of services. Unfortunately the type of therapy he was requesting, hyperbaric oxygen treatment, is not considered medically necessary, so insurance companies are going to deny the request every time.

It was mentioned that efforts are being made in New York State to pass legislation to require insurance companies to provide coverage for both autism-related therapies and diagnosis. However, the current bill language is inadequate and caters to stereotypes about the needs of autistics. It calls for coverage for “therapeutic care, including behavioral, speech, occupational and physical therapies that provide treatment in the following areas: 1. self care and feeding; 2. pragmatic, receptive and expressive language; 3. cognitive functioning; 4. applied behavior analysis, intervention and modification; 5. motor planning, and 6. sensory processing.”

This assumes that the only way to address people’s functional needs is through narrowly-defined forms of “ behavioral, speech, occupational and physical therapies”. It also makes it likely that only the most commonly-understood form of “applied behavioral analysis”—the so-called “Lovaas Method”, which despite the lack of scientific evidence of its effectiveness, remains popular with influential practitioners—would be the only form of behavioral therapy covered.

Instead, the bill should require “therapies for self care, feeding, language development, cognitive functioning, motor planning and sensory processing, including but not limited to: 1. occupational therapy; 2. physical therapy; 3. speech therapy; 4. tailored evidence-based behavioral therapy appropriate to the age, intellectual functioning, and needs of the individual, applied in natural settings.”

The discussions led to one very important topic, the lives of autistics and their inclusion into the community. This was an important point made to Assemblyman Crouch. From getting a child proper therapies, to providing the right school services, talk led to community inclusion for the growing population of adult autistics. Some in attendance did not agree with community inclusion, including one parent and a few service providers. However discussion centered on providing services to autistics in the community and providing or creating needed services.

People’s testimony on adult services showed services either are not being used, are not there or need to be better funded. For example, one person who works for the ARC said that there are no supported employment spots for people who want them. When it comes to housing, the only options being given are for group homes, when more individualized options would better serve adults needing housing services. Talk led to the group homes being created around the state for autistic youth. With better use of programs like CSS, and more focus on programs for community inclusion, these group homes would not need to happen. A representative of Broome Developmental Services stated that the group homes were created out of need and based on models researched by Raymond Romanczyk, a noted researcher in the area.

(Editor’s note: As we’ve reported, the “need” for group homes is manufactured; it results from the failure of Broome Developmental Services to provide sufficient quantity and quality of in-home services to families of minor children with autism. As regards Romanczyk’s model, it is a slightly modified version of the discredited “Lovaas Method”, which recent research has established is not effective for the adolescents who are targeted for the group homes.)

This still does not meet the need for services for autistic adults, who have little access to services. The truth is that there are more adult autistics who need services than most realize. As well, there are many children who will need services as adults but may lose the services they receive now when they reach the age of 21.

One of the things that would help most in making sure all applicable services are provided to autistics is combining OMRDD and OMH. Most autistic people need at least some of the services that each of those agencies provide. However, they are often forced into one system or the other because those agencies cannot cooperate to serve them, and the result is that they don ’t get all the services they need to be successful in life. It was mentioned what happened when OMRDD and OMH were combined in the past. However we are living in a different time and with the needs of autistics at the forefront, the consolidation of OMRDD and OMH will have to happen sooner rather than later.

Medicaid Managed Care Comes to BC

Medicaid Managed Care is now in Broome County. Many people with disabilities are either “excluded” (can’t participate by law) or “exempt” (can choose not to participate). However, people who are excluded or exempt may still be automatically enrolled and must file forms to opt out. Do not assume that because you’ re exempt or excluded that you are not now in Medicaid Managed Care. If you don’t opt out by the deadline, you’ll be stuck in it for at least 9 months.

Check the NY Healthcare Resources website for terrific info about exclusions, exemptions, etc:


Not a Slam, Duncan

As we’ve reported, physical and psychological abuse of students with disabilities is widespread in public schools, both in New York and nationwide. Although legislation in NY has been stalled by forces representing school officials, the issue has gotten lots of attention in Congress.

The latest is that US Secretary of Education Arne Duncan sent a letter to all “Chief State School Officers”, saying he was “deeply troubled” by revelations of school abuse in a public hearing held in the House of Representatives in May, and urging every state to “review its current policies and guidelines regarding the use of restraints and seclusion in schools to ensure every student is safe and protected, and if appropriate, develop or revise its policies and guidelines.”

Duncan said his home state of IL has good practices (though advocates point out that abuse has been documented in several IL schools), including requirements for Positive Behavioral Supports (a form of applied behavioral analysis that teaches positive behaviors in natural settings), and limiting the use of restraint and seclusion to very narrowly focused circumstances. He also said an official of his department would call every “Chief State School Officer” to discuss the issue by August 15, and the results will be posted on the Education Department website.

New York’s State Education Department just recently got a new Commissioner, David Milton Steiner; this presumably would be the person who got that phone call. At press time STIC was unable to get any information on Steiner’s views on school restraint, nor could we find any information about this phone call on the US Department of Education website.

Meanwhile, the Alliance to Prevent Restraint, Aversive Interventions, and Seclusion (APRAIS) has produced an excellent guidebook for parents on how to protect children from abuse in the schools. The guidebook is available for download at:


Courts Watch

Forest Grove School District v. T.A.

T.A. was a teenager with a history of school problems. Through most of that history, his teachers reported that he had trouble paying attention in class and completing his assignments, but he doesn’t appear to have been considered for evaluation or classification as a student with a disability in need of special education services.

When he got to high school, his difficulties worsened. His parents raised concerns and the school district had him evaluated by its psychologist at the end of his freshman year. The evaluation found no disability requiring special education services, a finding his parents accepted. He did better in 10th. grade, with “extensive help from his family”, but in his junior year, his problems resumed. In February of that year his parents suggested enrollment in an alternate program, in partnership with a community college, to the school district, but the school’s response was not recorded. At the same time, a private provider diagnosed him with ADHD and other “learning” disabilities, and recommended a special residential school. His parents enrolled him in that school and then hired a lawyer and told the school district that they had done so. A few weeks later, they requested a due process hearing on whether T.A. had a disability under the Individuals with Disabilities Education Act(IDEA). The district again had him evaluated by its psychologist, who once again found no disability that required IDEA services. The district refused to provide an IEP and the parents kept T.A. in the residential school through his senior year.

Eventually the hearing officer found that the child had a disability, that the first high school evaluation had been inadequate because it failed to address all potential areas of disability, and ordered the district to pay for the private schooling.

The district refused and took the case to federal district court, arguing that the 1997 IDEA amendments specifically stated that districts only have to reimburse for private schooling if the child had previously received special education services from the district and the district had failed to provide the “free appropriate public education” (FAPE) required by IDEA. The court upheld the school district, so the parents appealed to the Ninth Circuit Court of Appeals, which also found for the district. Then the parents went to the US Supreme Court.

In a 6-3 decision authored by Justice Stevens, the Supremes overturned the lower courts and upheld the parents. The decision hinges on the 1997 amendments’ wording. Stevens, along with most of the Court’s “liberal” members and two “conservatives”, Justices Roberts and Alito, claimed, unconvincingly, that the amendments merely offered an example of a situation in which a district would have to reimburse for private school placement, that is, if it failed to provide a FAPE to a child who had previously gotten special education services from it. They made a better case that IDEA’ s basic purpose, which is to require school districts to provide a FAPE to students with disabilities and to provide legal remedies if they don’t, takes precedence over the amendment language. Stevens said it would be “irrational” to assume that Congress intended to make districts pay for private placements if they stop providing appropriate special ed services to a child whom they had previously served, while if they had improperly never provided services at all they would be off the hook. He noted that T.A. was halfway through his junior year and following all of the prescribed appeals process steps would have taken too long to produce effective relief. Also, the Court had required districts to pay for private placement in similar cases in the past, and Stevens cited a principle of jurisprudence: that Congress, when it amends a law, is presumed to know its litigation history, so unless it specifically states that it intends to abrogate court rulings, it must be assumed that Congress intended those rulings to stand.

The “moderate” Justice Souter (who resigned this spring and was replaced by Sonia Sotomayor) wrote a dissent, joined by arch-conservatives Scalia and Thomas. Souter argued, convincingly, that the 1997 amendments’ plain language clearly limits reimbursement for private placement to cases involving students who had already received special ed services from the district. He also argued, with less merit, another point of jurisprudence: that courts must construe legislation, including amendments, in such a way that all parts of the legislation make sense. He said that the full sense of the law and its amendments can only be understood in light of its entire process for disputing and appealing decisions. He said families that fully followed the IDEA process could seek remedies to adverse decisions at several points along the way (at many points the school’s required response time is just a few days), that it was unlikely that parents who followed that process would end up sending a child to a private placement not approved in advance by the district, and that the court had to assume that school districts would act in good faith.

The case raises interesting issues. There is nothing in the Court’s opinions that documents Congressional intent in passing the 1997 amendments, but it seems likely that Congress fully intended to significantly limit school district financial liability for private placements but made technical errors in failing to specifically abrogate previous court rulings. It also seems likely that even if they had abrogated those rulings, Stevens’ “irrationality” and “effective relief” arguments would still have carried the day, though perhaps with a smaller majority.

T.A.’s story is tragic. He obviously had disabilities affecting his school performance his entire life, and perhaps if they had been properly addressed much earlier, the situation might not have escalated to the point where his parents felt they had to send him away. This story echoes a common refrain that we at STIC hear over and over: A child with a disability can ’t get proper services early on in his natural environment, and his family, wanting to believe that the situation isn ’t that serious, at first accepts the decisions of those who refuse to provide the services; later, growing desperate over the child ’s deteriorating condition, the family places trust in someone else who offers to take the problem off their hands, and accepts a segregated placement.

School districts have been served notice that despite recent IDEA amendments, they can still be left holding the bag if they don’t make a serious effort to provide adequate special ed services in the child’s home school. Souter’s “ good faith” argument holds no water; school districts have shown deliberate bad faith over IDEA compliance for as long as STIC has been working with school-age children with disabilities. Nothing gets the attention and respect of government entities that are responsible for providing disability services like a good old-fashioned lawsuit.

No Choice Left

As the health care reform debate raged on this summer, slowly building to a “perfect storm” of political dysfunction and crass manipulation, people with disabilities grew discouraged about the prospect of real change for them. Several plans were on the table in both houses of Congress, but none of them address long-term care, the issue that most affects people with disabilities.

The proponents of the various plans all made questionable claims of cost savings. But no matter which plan is adopted, leaving long-term care out of the mix will keep health care costs rising at insane rates. That’s because as the baby boomers age, we will get to a point where 30% to 40% of the population (seniors plus younger people with disabilities) will be using long-term care services over periods of several years to decades. That will be expensive any way you look at it, but it will be three to five times more expensive if we don’t reverse the system’s reliance on institutions and make integrated home and community-based services the norm.

The Community Choice Act (CCA), the latest version of federal legislation that people with disabilities have been promoting since the mid-90s, would enable a simple choice for people eligible for Medicaid: If you have a disability and qualify for long-term placement in a nursing facility, Intermediate Care Facility (for people with developmental disabilities), or psychiatric hospital, you could choose (not be forced, but choose) to have the same amount of Medicaid dollars spent to serve you in your own home, and in places in the community, instead of in those institutions. Medicaid waiver and consumer-directed personal care program data show that the average per person annual cost of the community-based choice will be between 1/3 and 1/5 of what it would cost to keep the same person in an institution.

President Obama supported CCA as a Senator, and he campaigned for president on his support of the bill in the disability community. But now he’s dropped his support, and at the same time, the groundswell of enthusiasm for the bill in Congress suddenly disappeared. Despite repeated letter-writing and phone campaigns, and public protests at which people with disabilities have been arrested, disability advocates have not been able to get CCA back on the agenda. Why is that?

As we’ve reported, Obama’s domestic advisor, David Axelrod, has a daughter locked up in a big institution in Illinois and he’s on public record as not wanting her let out. Is that reason enough?

Then there’s the “woodwork effect”. Whenever a version of this bill gets serious attention, someone claims that millions of people with disabilities are living outside of institutions with the help of friends and families, and if the law was passed, they’d “come out of the woodwork” to get taxpayer-funded services instead. There are two things wrong with this: First, given a choice between care from friends and family and care from paid strangers, most people choose friends and family. Second, these “informal caregivers” often must quit work, or go from full-time to part-time jobs, in order to provide the care, which cuts the amount of taxes they pay; in fact, sometimes it puts them on the government assistance rolls. So the “woodwork effect” is bogus.

Disability advocates often cite the “nursing home lobby” as opposing measures that increase use of home and community-based services. Certainly there are lobbies that are directly opposed to deinstitutionalization. The most well-known is “Voice of the Retarded”, which claims to speak for families of people with developmental disabilities but is largely funded and controlled by public employee unions. However, in July a nursing home lobbyist, Janice Zalen of the American Health Care Association, told The American Prospect that the industry likes CCA; they ’re just concerned that we don’t throw the baby out with the bath water and make it impossible for people who really need and want nursing homes to stay in them.

First, you can’t find a person currently in a nursing facility who, given a choice between it and returning to the comforts of the home they had before, would say they’d rather be where they are. You’ll find people who are afraid to leave because they don’t know where they’ll go, but that’s a different problem, with a different solution. Second, in modern medicine there is no such thing as a person who “needs” to be in a nursing facility indefinitely. There are people who are close to death who could benefit from a care facility—though in-home hospice would probably be more comfortable for most of them. Some people recovering from surgery need a couple of weeks of intensive observation and rehab and might best get them in a facility. But everybody else who is in a nursing facility can get their needs met as effectively and efficiently, with much higher quality of life, and overall lower cost, in their own homes. So the argument that people need and like to live year after year in nursing facilities is bogus too.

When nursing home lobbyists bring up the baby-and-bath-water thing, what they really mean is: We know people don’t really want to live in our facilities. We know that pure economics favors integrated home-based options, and we also know that most people don’t know that they can stay home and have better lives. So raising people’s awareness and making it easier for them to get integrated services at home will destroy our business.

Meanwhile, the Community Living Assistance Services and Supports (CLASS) Act is still on the table while CCA is dead. CCA would mostly benefit low-income people. The CLASS Act would create an optional form of long-term care insurance for people who can afford it. They could set aside wages to be reserved for long-term care expenses. If they pay into the fund for at least 5 years, they could draw money out as needed for as long as it lasts. This isn’t a bad idea, but it doesn’t address institutional bias or do much about health care costs. People can opt out, which many will do during a recession. Once they ’ve used up the money they’re just as likely to end up with government-funded long-term care as anyone else. The CLASS Act does create the impression that something is being done about long-term care for people with money—people who make campaign contributions. The nursing home lobby likes it because people can use the money for nursing facilities; it doesn ’t do anything to change the typical middle-aged middle-class person’s fatalistic belief that sooner or later, s/he will end up in one of those places.

Disability activists can’t get much media attention for this issue, and they are being ignored in Washington. Perhaps the only choice left to the disability community is to do whatever they can to block passage of any health care bill this year. “Nothing about us without us”, indeed?

Must IPhones Be Eye-Phones?

Did you ever wonder how blind people use all this newfangled technology? Texting or email via cell phone, viewing “ extras” or listening to descriptive video on DVDs, VoIP phone calls on the Web? Well, they don’t. Know why? Because it’s not accessible to them.

One would think, with the Americans with Disabilities Act nearly 20 years old, that there would be awareness of the need for accessibility among the geniuses who keep trotting out the iPhones and Blackberries and Blu-Ray players and they would automatically build this stuff in. But it isn’t happening. Up to now, law and regulations requiring accessibility for communication devices have been too specifically tied to particular technologies to keep up with rapid change. Computer chips and displays have gotten cheaper to make than good old “analog” buttons, dials, and switches, and equipment designers have focused on increasing the visual “wow factor” of each new device. They have not faced serious requirements to take accessibility into account.

The 21st. Century Communications and Video Accessibility Act of 2009 is an effort to get ahead of the curve. Most of its provisions apply to any device or communications service that uses the internet or “any successor protocol” to generate, transmit, receive and display text, audio, and/or video information (including basic cell phones as well as iPhones or Blackberries), and to “video programming” devices that record and/or play back programs (think DVRs and DVD and Blu-Ray players). All of these devices would have to be accessible to and usable by people with disabilities out of the box, unless this would be an “undue burden” for the manufacturers. If making them accessible would be an “undue burden”, they would have to be compatible with existing accessibility software and/or hardware (such as screen magnification or screen-reader software, and adapted keyboards), unless that would be an “undue burden”.

The bill also requires the Federal Communications Commission to find the best way to make things like DVD and DVR player menus and cable or satellite TV channel guides accessible to blind users. Once the FCC has done that, makers of those products and devices, and providers of those services, would have to make them accessible unless it would be an “undue burden ”. Access to closed-captioning and descriptive video would have to be top-menu items on these devices, and remote controls would have to have buttons to turn those features on and off.

The bill contains other important provisions. It would apply existing hearing-aid compatibility rules to all new telecommunications technology. It would clarify that telephone relay services must work with VoIP telephone services, and enable communication not just between deaf and hearing people, but between any two people who need a relay service in order to have a “telephone” conversation. It would cover new technology under existing “LifeLink” and “Lifeline ” services—special services that ensure that low-income people have telephone service to communicate emergency needs —so that, for example, deaf people eligible for those services could access them via videophones. It restates the requirement for closed captioning of TV programs and would restore a requirement for descriptive video on most new TV programming that was struck down by a federal court. “Consumer-generated content”, such as the videos of your idiot brother hitting himself over the head with a ball-peen hammer that you uploaded to YouTube, would be exempt from closed-captioning and descriptive video requirements.

“Undue burden” has the same meaning as it does in the ADA: “significant difficulty or expense”, considered in view of the total resources of the manufacturer or service provider. It’s a flexible standard, but many tiny and relatively inexpensive devices, including watches, thermometers, and glucose meters, are today made with chips that enable them to speak and controls that a blind person can use, so it should not be hard for companies to make these things accessible.

Ed Markey (D-MA) introduced the bill in the House of Representatives as HR. 3101 in June. The House Veterans Affairs Committee’s Subcommittee on Disability Assistance and Memorial Affairs held a hearing in July. We have no information on Senate action or the bill’s prospects.

Self Help


by Terrie Lincoln

If my family had listened to the doctors 12 years ago, I wouldn’t be able to tell you my story.

I am a 31 year old quadriplegic. I live in Rochester, NY and work as a Systems Advocate at the Regional Center for Independent Living. I have a degree in social services and a bachelor’s degree in public administration. I am currently working on my master’s in social work.

At the age of 19, I had an automobile accident. They had to use the Jaws of Life to free me from the wreck and rush me to the hospital. After I got there, my family and friends learned I severed my spine and broke my neck. At that moment I had no idea what was wrong with me, since I was in shock and slipping in and out of a coma.

I was air-lifted to a nearby hospital in West Virginia a few hours later. The doctors then told my parents they were going to do emergency surgery on my neck—a neck fusion. They had to put a plate in my neck. The doctors also told my parents while I was being prepped that there was no way I could survive a broken neck. They said nobody lives with a broken neck. My Mom said, “We’ll see about that.”

The surgery turned out well and I started recuperating. While I was lying in the hospital bed that did not rotate because they did not want to injure me more, the doctors would come in and ask my mom if she was ready to pull the plug on me. “ Why would I want to do that?” she would ask. The doctors answered, “What kind of life will she have? She won’ t. She won’t be able to dance, walk, work, have a social life, or be independent.”

My mom, being the strong woman she is, asked the doctor if he would pull the plug on his own son/daughter. He walked out without answering. The next day when the doctor came in my dad was there with my mom. The doctor informed us that I was going to be in a veggie state for the rest of my life. First of all, who uses the word “veggie”? Anyway, my dad asked what veggie I was going to be because I hated green beans and would be mad if I was one.

The doctor said he didn’t find that funny and felt it was inappropriate. My mom said she felt he was being inappropriate by coming in every day and telling her to pull the plug on her daughter. The doctor responded that any good mother would pull the plug instead of seeing their baby suffer. At that moment, my mom leaped over my bed and started choking the doctor.

The doctors must have known they were fighting a battle they were not going to win. They knew they were killing me slowly with the lack of care I was receiving. Within 15 days of being there, I had no bowel movement (they were scared to roll me), aspirated, had pneumonia, and collapsed lungs that they did not want to focus on at the moment. I was “life-flighted ” out on the 15th. day.

Once I arrived in Columbus, OH we felt I was on my way to recovery. I had a new team of doctors who specialized in spinal cord injuries. The relationships with the doctors started off more positive than the last set until the first time I died, which was about 3 weeks after I arrived. I was a code blue and they resuscitated me but didn’t offer any suggestions on how to inflate my lungs or help me breathe.

Over the weeks I got worse and worse. Pneumonia was causing my lungs to fill and I was constantly flat-lining (electrical time sequence measurement that shows no heart activity). The team of doctors asked: Do you want to pull the plug? They said you could take her off her feeding tube and we could induce her into a coma and she won’t suffer.

It took my mom following one of the doctors around all day and to his car at the end of his shift to get him to open up and talk. She went into his office and grabbed a picture of his family and held it up to him and asked, “What would you do? Would you let them pull the plug on the one you loved without doing everything you could?”

My mom came back to my room and I remember seeing her cry for the first time. She held my hand, said a prayer, and promised me everything would be OK. She said she would fight to the end even if she had to tear the hospital apart.

The doctors came in the next morning earlier than usual and told us they were prepping me for surgery. My mom asked what kind. He said he couldn’t sleep the night before because of her and he was going to put me on a ventilator, which would breathe for me. When I got out of surgery they had a rotating bed waiting for me. The bed helped with weight shifts and shook —to help break up the stuff in my lungs.

After a matter of weeks, my health started improving. I had color back, no bed sores, regular bowel movements, and my pneumonia was improving. I got released after 3 months from the main hospital to a nursing home within the hospital. This section was for people who were in poor condition (not expected to make it) and those who had to live with a ventilator.

During the time I was there I shocked everyone. I refused to have my feeding tube, G-tube, and J-tube anymore. I was tired of being poked and going in and out of surgery for no reason. I felt safer and healthier having the tubes out instead of in.

We started working on goals and weaning off the ventilator. We knew my health was improving and we were thanking Jesus every day. I was spending hours a day off the ventilator and the doctors were still asking if I wanted to live the rest of my life with this condition. If I chose no, they would keep me off the ventilator and I would die. I could get injected with morphine so I couldn’t feel it.

They’d work at my parents, saying things like, “Your daughter was so active before this accident and now she ’s nothing. She’s just like Christopher Reeve, she will need help with everything, she won’t be able to push her own chair. She will have to use a sip and puff device.”

Then they’d work on me. Saying stuff like, “Are you sure this is something you can live with? Do you want to spend the rest of your life on a ventilator?”

These are all the things we heard every day even though my health was improving. What gives them the right to convince someone to end their life?

My respiratory therapist said when I got off the ventilator completely I could go to physical therapy. One Friday we did our daily disconnecting of the ventilator—but this time we never connected it back. I ended up staying off of the ventilator for good.

Weeks later I started therapy and eventually got discharged after 5 months in the hospital. When I returned for my follow-up appointment a year later I made it a priority to see that team of doctors. When I rolled into the offices pushing my own power chair, without a ventilator, and healthy as can be, their jaws dropped to the floor and their eyes began to fill with tears.

Through my journey, I could not have done it without my two biggest advocates—Jesus and my mommy. She never stopped fighting from day one and never took no for an answer.

The Fast Track

by Tom Perchinsky

(Tom Perchinsky has amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig’s disease. Tom recently assisted STIC with the production of a DVD supporting the Community Choice Act. Copies of Tom’s DVD will be sent to several legislators and the President and we hope to give you a site at YouTube where you can view it soon.)

My life was filled with time spent biking (pedal power) on the Atlantic shore, golf (what a slice), tennis (jello knees) and work—lots of work. I am a workaholic!

It all began the spring of 2006, when I began to experience numbness in my left hand which I concluded was the result of endless hours on my computer. I also started stumbling going up stairs which I blamed on my stiff new size 15 extra wide Nikes. So much for my diagnostic career. The doctor I consulted was ROCK HARD-STONE COLD for the entire exam, test, and for the results meeting that followed. The diagnosis was made. The meeting lasted about two minutes, one minute to hear all about my issue, then a minute of paper shuffling and a referral to a clinic by the ICEMAN.

In 2007, I am introduced to a new way of life which includes a walker, a wheelchair capable of a disappointing top speed of only 8 mph. (the kid next door beat me in her pink Barbie car), a cough assist unit, a chest percussion vest that leaves a lasting impression, a feeding tube, canned liquid meals (no dessert), a power bed with a mattress that will BEND ME SHAKE ME ANY WAY YOU WANT ME, a suction machine, an eye-operated communication tablet, a bi-pap machine, a lift system and a special van. I also added new and different items for hygiene which we will not detail. At this point in my life, I would describe myself as a 6-foot gummy bear with a brain.

In 2008, I am treated to a wild ride to the ER, awakening three days later with a trach and on a vent. Six weeks later, I am finally on my way home from the hospital. I could write a book on the hurdles I had to overcome to make it home on a vent. It is a true horror story with a happy ending. Since then, I have made two additional trips to the hospital due to pneumonia. That year, I also learned why everyone should avoid hospital stays if possible.

It is 2009, and not much has changed. I save bundles on food and clothing costs. My vent has been upgraded, and is now the size of a laptop. How ironic, I was attached to my laptop computer for years and now I’m attached to a laptop vent. I really miss golf and tennis, so I took up IN MY DREAMS golf and tennis. Wow, has my game improved. The weather is never an issue and I’m playing in the top tournaments. Oh yes, I am also considering looking for a job. Once a workaholic, always a workaholic. I am preparing my job seeker ad headline, “GUMMY BEAR SEEKING WORK FROM HOME POSITION.”

What the World Needs Now: A comfortable bed pan. Truth in packaging laws should dictate existing pans be labeled PAIN PAN enclosed, discomfort guaranteed. A bed of nails may be more comfortable. Canned liquid meals with random scent strips attached. They do it for perfume, why not for odorless meals in a can for tube feeding? Think of it. lobster, steak, pot roast or maybe mom’s apple pie.

Some call it an illness... some call it a disease... I consider it a way of life.


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STIC’s Honor Roll

Once again it’s time to recognize outstanding individuals and organizations that make a difference in the lives of people with disabilities. Those described here have gone far above and beyond the call of duty to assist people with disabilities to achieve their full potential, to support community and systems change to enable citizens with disabilities to be fully integrated into all aspects of life, and/or to support STIC as an organization.

The awards were presented at a brunch at STIC on June 24. That was a memorable day, but we invite you to remember these fantastic people and organizations throughout the year.

Independence Achievement Award
This award is given to people with disabilities who provide excellent examples of how to achieve their dreams of real independence and true community integration.
Julie Bried
Julie worked hard and persistently to leave a group home and get her own apartment. She has also become involved in systems advocacy, and has testified at meetings of the NYS Most Integrated Setting Coordinating Council (MISCC) in Albany, representing the views of the many people with developmental disabilities who would prefer to live in real homes in the community.
Lifetime Achievement Award
This award goes to people who, throughout their careers, have consistently made highly important contributions to advancing the interests of people with disabilities and/or STIC.
Bobbie Krager
Broome County Health Department
Bobbie Krager, former Director of the Children with Special Needs and Early Intervention programs, retired in May after 40 years of service. Bobbie listened to parents and was highly committed to providing services in natural, integrated settings. She frequently passed information about STIC services, including those of our Early Childhood Direction Center (ECDC), as well as our Parent Mentor, Education Advocacy, and Service Coordination programs, to families and service coordinators, and she was an integral part of the ECDC’s success. She will be greatly missed.
Outstanding Accessibility Achievement
This award celebrates landmark achievements in physical or program accessibility.
Heather Meisner, Manager, AMC Theatre, Town Square Mall
STIC staff and consumers asked Heather to add the local AMC theatre to the list of theatres nationwide that participate in Sensory Friendly Films. AMC theatres, in partnership with the Autism Society of America, and other local groups, offer a movie showing once a month to families affected by autism and sensory integration issues. As Meisner puts it, “The auditoriums dedicated to the program have their lights up, the sound turned down and audience members are invited to get up and dance, walk, shout or sing!” This program lets families go to the movies together, often for the very first time.
Tioga County Area Transit System
Gary Grant, Director of Administrative Services
All Tioga County Area Transit buses are now wheelchair accessible. Following a county-wide transportation survey and input from riders last year, routes were changed and added to better meet the needs of the rural population. In NY, county transportation usually stops at the county border, but Tioga Transit has led the way with cross-county agreements and people can use their buses to access school and work in neighboring Broome and Tompkins Counties. Their accessible buses are part of the county’s emergency preparedness system.
Outstanding Agency Support
This award recognizes exemplary responses by government offices and/or not-for-profit agencies to the needs and wishes of people with disabilities.
Lt. Tim Hill
Broome County Sheriff’s Office
Lt. Hill oversees the Broome County Jail. He has been very cooperative with STIC staff in setting up times to visit inmates with disabilities and has shown a genuine willingness to assist them.
Melissa Mabie, Asst. Director of Community Services
As the “fiscal intermediary” for the OMRDD Self Determination program in our region, Melissa provides individualized support to people with developmental disabilities and their circles of support, service coordinators, and support brokers. She is dedicated to the program as well as to its participants, and works hard to make a complex and cumbersome process as simple as possible for everyone involved.
Outstanding Business Support
This category is for businesses that make a significant effort to enhance employment or accessibility for people with disabilities and/or to support the activities of STIC.
Lauren DiStefano
Starbucks came to us, offering to help in any way possible. They donated coffee, hot chocolate, and personally served at our Open House last winter. They donated coffee and hot chocolate for our Lou Brown training event. They donated cookies for our Hometown Holiday Light Festival sponsor gift baskets, and plans are in the works for a “Starbucks Night” at the festival this year.
Wegmans Food & Pharmacy
Donna Reep-Cook
Wegmans donated hundreds of dollars worth of buffet items, including a custom-made cake, for our Open House. They advertise and sell tickets at their store for our Light Festival, including gift cards as incentives, and have been very generous cash sponsors of the event as well.
Outstanding Consumer Support
This award is given to those who demonstrate exemplary dedication and effort in assisting particular individuals with disabilities.
Teresa Cluff
Cornell Cooperative Extension
Teresa runs the Eat Smart program, which teaches people about nutrition, meal planning, shopping, and preparing and storing food. While working with a person with a developmental disability, Teresa geared lessons to the person’s cognitive abilities. She focused on the person’s abilities rather than disabilities and showed genuine interest in the person as a whole.
Kelly Archer, Guidance Counselor
Christi Derr, Special Education Teacher
Johnson City Elementary/Middle School
Erica Dell’Sandro, Lourdes Youth Counselor
Due to a traumatic event that affected her mental and physical health, a student with learning disabilities was unable to attend school for about 2 months. When she returned to school, she had great difficulty coping with the environment and required many modifications and supports to get through the school day and keep up with her academics. Kelly, Erica and Christi visited her at home when she was unable to attend school. They modified her course work and homework and created a “safe place ” in the school for her to go to when she felt anxious and overwhelmed. They communicated well with the family, other school personnel, and many other service providers that work with this family. They implemented strategies that assist this student to feel safe, accepted, supported and valued. This creative and caring team is an excellent model of collaboration between families, schools and the community.
Outstanding Legislative Support
This award recognizes members of legislative bodies who exhibit clear understanding of, and leadership in pursuing, the goals of the disability rights movement or of STIC.
NYS Assemblyperson Clifford Crouch
Mr. Crouch has consistently supported our issues: expansion of EPIC; amending social service law in relation to termination of parental rights for reason of mental illness or mental retardation; visitability; and expansion of Timothy’s Law to include PTSD and to be made permanent. He responds very quickly to our requests and he represents his constituents with disabilities with great sensitivity.
NYS Assemblyperson Barbara Lifton
For the past six years, Ms. Lifton has been the prime sponsor of the Waiver of Sovereign Immunity bill, which would restore full protection under the ADA for workers with disabilities who are employed by New York State. Although this bill has passed the Assembly several times, it has died in the Senate the few times it has been introduced. Lifton has persevered in getting this bill through the Senate as well, and it was introduced this year with ten Senate cosponsors. She has also sponsored or co-sponsored bills to reform the election process and ensure that it is accessible to people with disabilities.
NYS Assemblyperson Donna Lupardo
Donna has been a very responsive Assemblyperson. She has supported, co-sponsored and helped pass many of our disability agenda bills in the past. A few months ago we met with her to discuss a bill that would regulate the use of restraints in public schools. Within a day she had signed on as a co-sponsor of this legislation. She understands our issues and she fights for us in Albany.
NYS Assemblyperson Amy Paulin
Ms. Paulin has been pushing relentlessly for the past six years to get bills passed to make the ADA’s Titles II and III part of the NYS Human Rights Law. Disability rights advocates have been trying to pass these bills since 1992, and although they consistently passed the Assembly, we were rarely able to even get them introduced in the Senate. Paulin has been extremely dedicated to ensuring passage of these bills in the Senate, and it is largely because of her undying effort that the Title III bill finally passed and was signed into law in 2007. She has not rested on her laurels, however, and is still working for the Title II bill.
Outstanding Media Support
This category recognizes media companies and reporters that make strong efforts to get the word out about STIC and our activities and issues.
Doug Mosher, Clear Channel Radio
Doug consistently supports STIC through promotion of our Hometown Holiday Light Festival on Clear Channel stations. He is always willing to have STIC staff appear on the “Community Focus” show to promote events and inform the community.
News Channel 34
Frank Dirig, Jim Ehmke
This station covered our Open House and Light Festival last year almost weekly from Thanksgiving to New Year’s, allowing STIC to become better known by the community. They are always open to putting us on the air to talk about upcoming events.
Outstanding Systems Advocacy
This award commends individuals who exhibit extraordinary leadership and/or commitment of time and energy to working on disability rights issues.
Jennifer Monthie, Esq.
Disability Advocates, Inc.
For the past two years, Jennifer has worked tirelessly to help write, revise language, and move through the state legislature, a bill that would protect children with disabilities from the harmful use of restraints in public schools. She has gathered information and support from around the state in order to form a coalition of groups to advocate for the passage of this legislation. Her knowledge of this subject and her deep passion to protect children have driven this issue and her leadership inspires us.
Peggy Schadt
Peg has responded to every Action Alert STIC has distributed this past year. After she makes her calls or sends her emails, she passes the alerts along to people on her own email lists. Peg created STIC’s famous March 17 state budget rally shower curtain signs, which were a hit with all the demonstrators in Albany. Peg has shared her personal family health care stories in public testimony locally and in Albany as she has joined other community groups fighting for universal health care, as well as passage of the Community Choice Act, the CLASS Act, and the SSDI/Medicare Timeline Act.
Martin Shay
Marty makes calls and sends emails in response to our Statewide Systems Advocacy Network Action Alerts on a regular basis. He gathers information about various issues and relays them to STIC’s Advocacy Director. This past year he researched Medicare Part D issues and wrote an article for this newsletter. Marty’s motto is: “Tell me what more I can do and I ’ll do it.”
Outstanding Volunteer Service
This category recognizes individuals or organizations that provide extensive and ongoing volunteer services to STIC or the people we serve.
Walter Hartnett
Walter spent tireless hours, day after day, organizing our assistive technology loan closet after we moved to our new building. He has also helped repair loan items and assisted with the Hometown Holiday Light Festival.
Steve Kraly, BAE Systems
Through Steve’s encouragement, BAE employees worked the booth and park on 75% of our 2008 Light Festival nights. He was extremely supportive in helping his staff to be enthusiastic and upbeat ticket sellers, by educating them about STIC, giving them hand warmers, and even providing them with candy to hand out to the cars. He has also arranged for BAE to be a generous cash sponsor of the Light Festival, and has obtained BAE cash and in-kind support for various other STIC activities in the past.

Holiday Light Festival

9th Annual
Hometown Holiday
Light Festival

Otsiningo Park, Binghamton

November 27 - December 30, 2009
5 pm - 9 pm
$8.00 Per Vehicle

Proceeds Benefit
` Southern Tier Independence Center
For Information Call
(607) 724-2111 (voice/TTY)

Fall 2009
Issue No. 96

Ten Years After
AccessAbility Masthead
Autism Regional Forum Gets an Earful
Closing Down the Big House
Courts Watch
Medicaid Managed Care Comes to BC
MISCC Meeting Mobbed
Must IPhones Be Eye-Phones?
A New Waive?
No Choice Left
Not a Slam, Duncan
Tag! You're It!
The Fast Track
How I Didn't Die
Hometown Holiday Light Festival
STIC's Honor Roll