AccessAbility

by Maria Dibble

Ten long years have gone by since I've been able to write an editorial with this particular subject matter. After a long and arduous decade of no funding increases, combined with significant increases in consumers requesting services, I'm pleased to say that it has finally happened.

In the recently passed budget, the 35 Centers for Independent Living (CILs) in New York State received a $1.5 million increase in funding. While this was only half of our request, it is still much appreciated and desperately needed.

For STIC, this will mean approximately $43,000 in additional funds. Most of the money will be used to make up for years of growing costs for health benefits, utilities, supplies, postage and other expenses that rise even when our funding doesn't.

However, a little money will be left to allow us to expand peer counseling and accessibility services, and perhaps even begin to pursue our long-time goal of systematically assisting people to leave institutions and move into the community. Watch these pages for future developments.

I'd also like to express our deep appreciation to Senator Thomas W. Libous for all of his assistance during this difficult budget process. He was a strong supporter of the Centers, and played a major role in securing the additional funds.

We also extend our heartfelt thanks to the Senator for obtaining a $10,000 Legislative Member Item for STIC. The funds will go toward some much-needed renovations on the third floor of our building.

The money itself is a wonderful achievement for the Centers, but something else rather significant also came out of this year's efforts.

For the first time in the 16 years of state funding for CILs, the centers were mentioned in the Governor's press release about the budget. While this may seem insignificant to the reader, I assure you that it is a major victory. It means that someone in the Governor's office recognizes the contributions of the Centers and acknowledges the importance of what we do for our communities.

Many thanks to the advocates, consumers, legislators and Governor's staff who, working together, finally gave the Centers this very long-overdue increase. Let's hope it's the beginning of a better decade to come.

Official US Government Information from the Department of Justice

People with disabilities may find it difficult or impossible to use the controls, hose or nozzle of a self-serve gas pump. As a result, at stations that offer both self and full service, people with disabilities might have no choice but to purchase the more expensive gas from a full-serve pump. At locations with only self-serve pumps, they might be unable to purchase gas at all.

The ADA requires self-serve gas stations to provide equal access to their customers with disabilities. If necessary to provide access, gas stations must:

Provide refueling assistance upon the request of an individual with a disability. A service station or convenience store is not required to provide such service at any time that it is operating on a remote control basis with a single employee, but is encouraged to do so, if feasible.

Let patrons know (eg., through appropriate signs) that customers with disabilities can obtain refueling assistance by either honking or otherwise signaling an employee.

Provide the refueling assistance without any charge beyond the self-serve price.

If you have more ADA questions, here's how to contact the Justice Department:

ADA Information LineM (800) 514-0301 (voice) (800) 514-0383 (TTY)

ADA Home Page www.usdoj.gov/crt/ada/adahom1.htm

The Supreme Court announced decisions in three ADA employment cases on the same day it handed down the word on Olmstead. Those decisions seriously weaken the ADA Title I job discrimination provisions.

The ADA definition of who is protected has three prongs. The first defines disability as a significant limitation of one or more major life activities. The second prong says people who are discriminated against because they are perceived to have a disability are protected. The third prong applies protection to people with a history of a disability.

All the cases (Sutton v United Air Lines; Murphy, Vaughn L. v United Parcel Services, Inc.; Albertsons, Inc. v Kirkingburg, Hallie) concerned people whose conditions didn't meet the ADA disability definition but who might have been protected by the perception or history prongs. Two cases concerned people with vision problems that were corrected by glasses. One of these involved two nearsighted pilots who were licensed to fly passenger planes in the US but weren't allowed to pilot international flights because they didn't have "natural" 20-20 vision. The third case involved a man who had high blood pressure but took medication to control it.

In our last issue, we erroneously reported that the plaintiffs did not claim they were discriminated against because they were perceived as having a disability. In fact, the plaintiffs did make that argument, but the Supremes threw it out.

When the ADA passed, the Department of Justice issued "guidance" saying that a disability would substantially limit the major life activity of working if it could (without reasonable accommodation) keep a person from doing a wide range of jobs. This was to prevent people from claiming that they have a disability just because they can't do one kind of job. It was intended only to apply to people who were claiming a real disability. But the Supreme Court misinterpreted the rule. When the plaintiffs said they were being discriminated against because their employers perceived them to have disabilities that they didn't have, the Court said, "Well then, you have to prove that the employer thinks that due to your supposed disability, you are unable to perform a wide variety of jobs." That was impossible to prove. For example, the pilots' employer only thought they couldn't fly international flights due to their perceived disability. (We aren't saying the employer was wrong here. The issue might have been that foreign airports wouldn't accept pilots with glasses, a situation that the employer couldn't "reasonably accommodate." What concerns us is the potential impact of the Court's decision for other cases.)

This wasn't what Congress intended when it created the "perception prong". Consider a person with a facial "disfigurement" who applies to be a receptionist and is turned down because the employer thinks they will disgust or frighten customers. A facial "disfigurement" isn't a disability; it doesn't substantially limit any major life activity. But people with that condition have often unfairly been denied jobs working with the public even though there is no objective evidence that they would drive customers away. Congress specifically wanted to make it illegal for an employer to say, "You might be fine in the back room, but your 'disability' will make it impossible for you to be effective in the specific job of receptionist."

Since the plaintiffs couldn't pass the Court's very narrow test, the Court then considered whether they actually had disabilities. It would have been safe to say that due to the "substantial limitation" rule, they didn't. Instead, the Court took it upon itself to say that corrective lenses (or use of medication by the man with high blood pressure) reduced the presumed disabilities to nonexistence. The plaintiffs were therefore deemed ineligible for ADA protection.

So now we have two very serious problems.

First, no employer who discriminates due to perceived disability is going to say, "I won't hire you because you can't do a wide variety of jobs." They'll say, "I won't hire you because I think your disability will keep you from doing the job you're applying for."

Second is this idea of medications or prosthetics "erasing" a disability. In our last issue, we said if the Court ruled the wrong way, it could mean that people who use wheelchairs might not be protected because the chair "corrects" their inability to walk. Well, that may be the situation now. Consider another example, an amputee with a prosthetic leg. She may walk with no more than a slight limp, but may be unable to walk long distances or walking may be exceptionally tiring, and perhaps painful, for her. She may need reasonable accommodations such as a longer work day with more frequent breaks, or a modified job description that limits the need to walk. Such accommodations can often be provided with little effort or cost to an employer. But an employer may refuse, and this woman might then be denied ADA protection. So this decision, while it was "about" people with very minor conditions, can potentially affect people with very significant disabilities.

An alternative may be for people with conditions similar to those in these cases to seek coverage under the "history of disability" prong. This might have worked for the man with high blood pressure controlled by medication. The problem for him, though, is that people with a history of high blood pressure still face increased risk for stroke or heart attack even if medication reduces their pressure to within normal limits. It seems a stretch, but an employer could say that letting a person who might have a sudden stroke or heart attack be a truck driver (as in this case) poses a direct threat to health and safety. The ADA regulations presume that employers who raise such concerns in good faith should be given the benefit of the doubt, and the courts have been doing that.

Another option may be to seek coverage for any other problems that could be considered a disability, especially if they result from the "corrective" measure, such as debilitating pain caused by wearing a prosthesis or serious side-effects from medication.

For now, though, it seems the ADA's "perception" prong is dead, and the literal definition of disability is seriously weakened.

Given this, and the Olmstead decision, the most realistic response for disability activists may be to hope for a change in control of the House of Representatives in the 2000 elections, followed by passage of a new, stronger, disability civil rights law.

A new law could redefine "disability", when referring to employment, to mean "any condition or disease that requires an otherwise qualified person to require reasonable accommodation(s) in order to do a particular job." It could explicitly state that the "perception of disability" prong means an employer erroneously thinks a person has a condition that would keep them from doing the job being sought or that would have a negative impact on the job, jobsite, or business. The debate over such a new law would be a great opportunity to publicize the most recent research, which shows that nobody "needs" to be segregated in a "special" place. This might result in a real civil rights law, one that clearly says that all law-abiding people with disabilities of any nature or severity have an absolute right to live, learn, work, and socialize among nondisabled people in our communities.

The New York State Department of Health (DOH)'s Early Intervention Program recently released its Clinical Practice Guidelines for Autism and Pervasive Developmental Disorders for children aged 0-3. Parents of children with autism and advocates for people with disabilities are appalled at the Guidelines' clear bias in favor of Applied Behavioral Analysis (the method used at the Binghamton University Children's Unit), and its rejection of other promising techniques and therapies.

Page 33 of the Guidelines Quick Reference Guide says, "It is recommended that principles of applied behavior analysis (ABA) and behavior intervention strategies be included as important elements in any intervention program for young children with autism." While some families have reportedly had success with ABA, STIC's consumers tell a different story. Children in ABA have been gripped tightly by the jaws and repeatedly commanded to say a single letter of the alphabet for a half hour straight. They have been left sitting in uncomfortable chairs for long periods with no activity while being punished for "self-stimulating behaviors." Families have said their children have returned home from such programs with bruises, and allegations of abuse have resulted in many children being removed from such programs. Advocates say the programs are little more than "animal training". They decry the lack of an inviting, child-friendly environment and the programs' focus on teaching discrete "skills" that have little or no functional application in real world environments.

Among practices the Guidelines call "not recommended" are several that have produced successful results for many people and are widely viewed as valuable options by families and professionals across the state. Examples include: the Developmental, Individual Difference, Relationship (DIR) model; Sensory Integration Therapy; Music Therapy; Auditory Integration Therapy; hormone therapies such as secretin; and diet therapies.

Parents are especially concerned that these guidelines are likely to be used by school districts and insurance companies to govern what they will and won't pay for. They could have a devastating effect on the availability of alternatives to ABA in NY State.

Concern over DOH's position is not limited to the Southern Tier. A recent forum in Syracuse where DOH's materials were presented resulted in a rash of objections from parents and professionals to claims that these other approaches are ineffective.

STIC and the Parents Empowering Parents (PEP) support group are working to gather evidence to get DOH to change their position. PEP has held two informational forums, and another one will be scheduled soon. If your child has had a bad experience with ABA, or good experiences with any of these other therapies, or if you want to come to a forum, please call Jo Anne Novicky at 724-2111 (voice/TTY). Your information will be kept confidential; any stories provided to DOH will be stripped of all identifying information.

There is also a growing national movement of families of people with autism that is speaking out against both ABA practitioners' efforts to monopolize autism treatment and abuses associated with ABA programs that serve children with autism or mental illnesses. Contact CIBRA (Children Injured By Restraint and Aversives) by email at CIBRA@webtv.net, or on the Web at http://users.1st.net/cibra

NY State's 1999-2000 budget passed on August 3. In a deal agreed to in advance by Governor Pataki, Assembly Speaker Silver and Senate Majority Leader Bruno, the Governor resubmitted his budget bills with all of the changes agreed on by the three leaders. Since by law, the Governor can't veto a bill he himself has submitted, last year's surprise veto couldn't be repeated.

In addition to the increase for Centers for Independent Living (see At Last ...) these notable items were included:

Year One of the proposed five-year "New York State Creating Alternatives in Residential Environments & Services" (NYS CARES) plan was approved. This first year's funding will let almost 1000 people with developmental disabilities leave the residential service waiting list and move into new community-based "residential opportunities." While NYS CARES theoretically lets people use OMRDD funds to set up integrated individual living situations in their own homes or apartments, the Governor's press release announced that 3,000 of the five-year plan's total of 4,900 "opportunities" had already been allocated. This suggests that much of the NYS CARES budget has been committed to building group homes (only capital construction requires such long lead times), even though most people with developmental disabilities don't want congregate living.

The budget also includes funds for 900 new community residence "beds" for people with mental illness. Again, while this is a welcome increase in scarce community supports for people with mental illness, most members of this group also would prefer not to live in congregate settings.

Another $29.4 million was added to the Community Mental Health Services Reinvestment Act budget, which will fund various community based services for people with mental illnesses, many of which are governed and operated by consumers.

VESID's case services and supported employment line items were not increased. This is bad news. VESID's improved intake and eligibility process has brought in many more new customers, and in many regions counselors are unable meet customer needs within reasonable time frames. Not increasing supported work funding is penny-wise and pound-foolish: Supported work for people with disabilities reduces "day program" costs, cuts overall welfare expenditures, and increases tax revenues as consumers become self-supporting taxpayers in real jobs in our communities.

Taken as a whole, New York State's 1999-2000 disability budget is too little, too late, but better late than never.

"Economic Need" refers to VESID's policy for determining whether you can afford to pay for part or all of the services you get from them. Economic need doesn't affect your eligibility for services, only whether you have to pay for them. VESID hasn't changed its economic need policy since 1991. Its income limits haven't kept up with inflation, and customers who could have comfortably paid for some services in 1991 can't afford it today. VESID proposed changes in 1997 (see AccessAbility #47, Summer '97) that advocates and providers pretty much universally hated. VESID carefully considered those objections and has a new proposal that addresses most of them.

VESID calculates economic need by assigning you an "income threshold" based on your family size. Today, for a family of 4, it's $18,000; it's higher for larger families, lower for smaller ones. If your income exceeds the threshold, VESID subtracts your basic living expenses from your income. They then add to the result a percentage of your assets, such as cash in the bank. The total, your "available resources", is what you must pay toward the cost of your VR services.

VESID wants to increase income thresholds gradually, over 3 years. By the end of Year 3, the threshold for a family of 4 would be $55,000. They will also reduce the share of your "available resources" they will claim from 100% to 50%, and all disability-related expenses would be deducted from your available resources. If you're on SSDI, your income from SSDI payments would be exempt when figuring your income, but economic need will apply and your assets will be counted. If you get SSI, economic need won't be applied, even if you're under the age of 22 and living with your parents.

Economic need only applies to certain services. Today, regardless of your income, if you are eligible for VESID services, they must not charge you for assessment, counseling, placement, on-the-job training, supported employment, vocational training at business or trade schools, training and transportation provided by community rehabilitation programs, workstudy programs, driver and homemaker training, or disability-related supports such as interpreters, readers, attendants or special transportation.

VESID wants to add several services to the list of those you might have to pay for.

There are sound philosophical reasons for most of these changes. For example, under the new policy, VESID would pay for any training or transportation at rehab programs that leads to integrated employment, but if your goal is a sheltered workshop, you'd have to pay for as much of those services as you could afford. VESID has always applied economic need to most job training or education. They want to extend the policy to driver training, vocational training at business or trade schools and to workstudy programs. After all, nondisabled people don't get such training for free if they can afford to pay for it. VESID also plans to apply economic need to "homemaker" training, because the focus of VR services is, and should be, paid integrated employment.

Some of the proposed additions to economic need are questionable. VESID wants you to pay for interpreters, readers, attendants and special transportation if you can afford it. They argue that the ADA requires schools or employers to pay for interpreters and readers; that if you really need attendants, they can be funded by Medicaid; and that transportation is becoming more accessible so that "special" ambulette service shouldn't be needed. Advocates point out that these services, when paid for by others, are "similar benefits". The federal Rehabilitation Act says VESID must make sure these services are provided and can only make you use similar benefits that are readily available. If a school or employer digs in its heels and fights the ADA requirements, or you aren't eligible for Medicaid, or your county won't provide enough attendant hours or doesn't have accessible public transportation, then those benefits aren't readily available. If a delay would mean you'd lose a job or education opportunity, VESID should pay up front and perhaps try to collect from the responsible party later.

VESID has responded to the interpreter issue by saying it will negotiate payment arrangements with schools and colleges in advance and will not implement the changes until those agreements are in place.

VESID will hold public hearings on this in early October; one will be in Syracuse and others will be scheduled. Call VESID for more information.

People with mental disabilities are decrying NY State's new "Kendra's Law", which allows people with mental disabilities to be forced into outpatient "treatment", including medication. Family members, roommates, psychiatrists, psych center directors, and local mental health officials can go to court to get someone forced into treatment.

Forced treatment can only occur if there is "clear and convincing" evidence of need as established through medical testimony. A court could order people to accept any or all of the following: case management; medication; individual or group therapy; supervised living; alcohol or substance abuse counseling; blood and urine tests; and educational and vocational services.

A person can only be forced into treatment if they are 18 or older; mentally ill; "unlikely to safely survive in the community without supervision"; have a history of noncompliance with treatment that has caused either two hospitalizations within the last 36 months or one or more acts of violence; are unlikely to voluntarily accept treatment; and are likely to relapse or be hospitalized. A person facing forced treatment has a right to a lawyer and due process, and can appeal the order for treatment. Failure to comply with ordered treatment could get you hospitalized for 72 hours for "observation" and forced medication, or even permanently committed.

The Office of Mental Health will make grants to counties so they can provide medication to people who have been discharged from institutions while they are applying for Medicaid. Beyond that, the law does not address disability rights activists' criticisms that forced treatment would not be needed if there were adequate community supports for people with mental illness.

The US Supreme Court handed down its decision in L.C. & E.W. v Olmstead in June. The case involved two women with both developmental and mental disabilities who wanted to leave an institution in the state of Georgia and live, with state-funded supports, in the community. The state refused and the women sued under Title II of the ADA. Title II says that if state and local governments provide services to people with disabilities, they must do it in the most integrated environment appropriate to their needs unless it would be an "undue burden" or would "fundamentally alter" the service. Lower courts ruled against Georgia, citing the Helen L. v DiDario precedent. In Helen L., a federal appeals court found that providing an integrated alternative is not an undue burden or fundamental alteration if the state already provides that alternative to some people at the same or lower cost as the segregated option. Therefore, failure to provide that alternative on demand was deemed illegal discrimination.

Following the lower court L.C. rulings, Georgia released the women (who are doing well, one in a community residence, the other in a supported apartment), but kept fighting the suit. Georgia claimed that the lower court decisions could bring on lawsuits forcing states to quickly close institutions and "dump" the inmates on the streets. Georgia argued that a state that has a long-term plan for deinstitutionalization must be free to structure that plan to ensure that the needs of those still in institutions, and those in the community, can be met without straining the state's fiscal resources. To defend its position, Georgia argued against the Helen L. v DiDario precedent, claiming that it wasn't discriminating against people with disabilities because it wasn't applying different standards to disabled and nondisabled people; the situation only applied to people with disabilities, who were being "treated" according to their "needs". Therefore, the federal government had no business telling it how to run its institutions.

We have reported here on the heroic and successful struggle of disability activists to get several states to withdraw their support for Georgia in this case. As the case went to the Supremes, some activists were afraid the Court would overturn the ADA's "integration mandate"; others, citing previous favorable ADA decisions, were sure the Court would come through on this one also.

The Court did neither.

The Court's 6-3 decision did come down in favor of the ADA "integration mandate". The Justices found that Congress intended, that the ADA requires, and that the federal Departments of Justice and Health & Human Services have the authority to mandate, that people with disabilities be desegregated as far as possible, if they so desire.

However, the Court largely bought Georgia's argument that it was being pushed too hard and too fast. The ADA, it said, does not require that people be released from institutions into settings that won't meet their needs, simply to close institutions or to enforce someone's right to integration. The Court said the lower court decisions would make it virtually impossible for a state to claim an "undue burden" or "fundamental alteration" defense for refusing to desegregate, and that was not reasonable. Instead, a state should be able to consider the equitability of treatment for all people receiving services, and the impact of desegregation on its ability to meet the needs of all of the people being served. For example, if a state has a plan to desegregate those for whom its experts deem desegregation appropriate, and that plan includes a waiting list, as long as people are moving off the list at a reasonable rate, and the state's reason for delaying desegregation is not simply to keep institutions open, then the state is in compliance with Title II. A person near the bottom of the list could not sue under Title II to achieve immediate release from a segregated setting. Sounds quite reasonable, doesn't it? Let's look closer.

Problem One

The concerns that Georgia raised are red herrings. The Court accepted them because the Justices are ignorant of recent history in the disability rights and services arenas. Yes, it is difficult to develop a plan to close institutions and move their inmates into appropriate integrated community supports. But it is far from impossible. It's not even risky. It was done in New York every time a developmental center closed. NY and other states have plenty of experience in how to do this without risking anyone's safety or busting budgets. It is always cheaper in the long run to provide integrated services, even if costs to maintain two different systems climb in the short run. State agencies and legislators just have to work together to set goals and timetables to create community support opportunities, move people into them, and close institutions.

Problem Two

The Court created a new civil right. It said people can't be forced out of institutions if they don't want to leave, even if the institution isn't the most integrated setting appropriate for their needs. So now people with disabilities have a "right" to be segregated if they want to be. Imagine what would happen if the Court declared such a "right" for black people or women! (So far, it has ruled against blacks and women who wanted segregated schools because they think black kids or girls learn better when with "their own kind". But black people and women should view Olmstead with alarm. The Supreme Court has sent a signal that its views on racial and gender segregation could change.) A more immediate result is how the "segregation right" meshes with the Court's ruling that a state can consider the needs of all the people it serves when planning deinstitutionalization. This is a loophole that will let states imprison hundreds of people in institutions that they want to leave, in order to make it cost-effective to keep those institutions open for a few people who want to stay in them.

Problem Three

The Court let states' "experts" decide for whom integration is "appropriate". The Justices didn't grasp the civil rights implications here. People are segregated in institutions not out of medical necessity but due to ignorance, fear, bigotry and political calculation. The facts are settled. Everyone with a disability will do at least as well in a properly-supported integrated setting as in an institution, at less cost, and almost everyone will do a lot better in terms of physical and emotional health, productivity, behavior, and quality of life. Those who claim that some people need to be in institutions come in four categories: 1. They aren't aware of current facts. 2. They are family members who wrongly fear that if their relatives are released from incarceration, they will either be neglected on the streets or forced back into their families' homes-or officials who feel they must defend said family members. 3. They're public employees and their unions, who fear jobs will be lost if institutions close-or officials who are afraid of said unions. 4. They hate or fear people with disabilities and want them hidden away. Politicians and bureaucrats with these mindsets will tell their paid experts what to say, and the experts will say it. The Supreme Court justices had the same mindsets. So they declared that people have a right to demand that the state spend money to segregate them, but they don't have a right to live in the community supported by the same money. Only ignorance and fear can explain such an irrational decision.

Problem Four

This decision weakens the Helen L. v DiDario precedent that a waiting list for integrated services, when a state has immediate openings for segregated alternatives, is automatically illegal discrimination. If Helen L. sued for personal attendant services today instead of in 1993, Pennsylvania could tell her with impunity that it has a waiting list and they'll get to her when they get to her, but meanwhile, they have this nice nursing home "bed" all ready...

Olmstead is no cause for celebration. States that truly understand disability rights and promote integration won't be affected. In New York, whose halting, fragmented, and contradictory deinstitutionalization policies somehow still manage to produce a steady trickle of people from its human warehouses, this decision means nothing is likely to change. In states that have been dragged kicking and screaming into integration, it's quite possible that progress will be reversed now. In Olmstead's wake, disability activists need to reflect on the weaknesses of the ADA and the long, uphill road we still have to travel to educate people about the ignorance, bigotry, and discrimination we face.

After a much-publicized debate, the US Senate passed a "Patients' Bill of Rights" for people in managed care. The bill doesn't contain provisions that President Clinton demanded to prevent a veto, and is much weaker than NY State's "Managed Care Bill of Rights", which passed last year.

Most of the Senate bill only governs HMO coverage provided by "self insured" employers-employers who finance their own insurance plans rather than purchasing them from insurance companies. That only affects about 4.8 million people.

A few provisions apply to larger numbers of people: 161 million privately insured Americans would benefit from a rule that requires insurers to pay for whatever length of time in a hospital a doctor recommends after breast cancer surgery. There is a requirement that the 123 million people who get insurance through private-sector employers must be able to have denials of coverage reviewed by an external body. However, the HMO can choose who does the review, and the reviewers have to follow the HMO's rules for determining "medical necessity." There is also a provision that outlaws some forms of insurance discrimination based on genetic testing or family history, for all Americans.

Provisions that only apply to self-insured plans: Coverage for emergency services in out-of-network hospitals is mandated, but we don't know if plans could still require prior approval for emergency services. HMOs would have to pay for routine care for people in clinical trials, but only for cancer research. Companies with over 50 employees would have to offer the option to get services without going through a "gate-keeper" if they have a closed network (some advocates say this provision has a big loophole). HMOs would have to ensure "timely access" to specialists, but only if the HMO covers specialist care; "timely" isn't defined, and HMOs aren't required to pay for specialists outside their networks if they don't have suitable specialists of their own.

Advocates cited as another major objection the Senate's failure to adopt a provision that lets customers sue HMOs if non-payment decisions result in harm to the customer.

COMPARISON TO NEW YORK

NY's law applies to all HMOs, and has additional protections for Medicaid recipients being forced into HMOs. Emergency room service must be covered without prior approval if a "reasonable person" would assume a real emergency existed. HMOs must pay for specialists outside the network if they don't have suitable ones of their own, and in some cases must let customers choose specialists as their primary physician. External review of payment decisions is done by an independent body not chosen by the HMO. There is no requirement that reviewers follow the HMO's rules.

There was a public outcry about the Senate bill. Representative Norwood introduced a bill in the House (H.R. 2723, "The Bipartisan Consensus Managed Care Act") that is stronger than the Senate bill and has bipartisan support (at present, over 20 Republican sponsors give it a slim majority). Health insurance industry spokespeople said they will "spend whatever it takes" on attack advertising to defeat this bill. Their campaign should be running full steam right now. time you read this.

By the time you read this, Broome Developmental Services (BDS)' Self Determination pilot project will be underway. Applications to participate were sent to service providers in August, and the deadline to return those applications was September 10.

Self Determination is a new way of getting OMRDD-funded supports or services for people with developmental disabilities. The person with the disability, with a "circle of support" that he/she freely chooses, controls a budget from which to purchase supports and services. There are no limited menus of pre-defined services, and no "approved providers". The person and his/her circle go through a person-centered planning process to decide what he/she needs and figure out how to get it. If it can be obtained from volunteers, that's great. If it must be paid for, the person/circle negotiates a fee with whoever provides it. If what's provided doesn't cut the mustard, the person takes his/her money somewhere else.

About 25 people in some other parts of the state have already started doing this. Their results were studied, and OMRDD decided it needed to learn more about how to do it, so it expanded the pilot to take in another 100 people in all areas of the state. In the BDS service area (Broome, Chenango, Delaware, Otsego, Tioga and Tompkins Counties), this is still a learning process. So, 5-8 people will be chosen from among all the applicants, and they will be people who are likely to succeed while providing BDS with a range of situations from which to learn. The successful applicants will want to make big changes in their lives that can't easily be supported by BDS now, will have a clear idea of the changes they want to make, and will have strong circles of support. They will also be adults with varying disabilities who live in a variety of settings.

BDS has a committee that includes BDS staff, other agency representatives (including one from STIC), parents and people with developmental disabilities. This committee helped develop the application form and will review the completed applications. Several applicants will pass the first review and be interviewed by the committee. Those the committee recommends to participate must be approved by the BDS Director and the OMRDD Central Office. The finalists and their circles will then get training and help to develop their life plans and budgets.

Sounds great, you say, but it's already a done deal. Why should I be interested?

Yes, if you haven't already applied for the pilot project, it's too late. But at some point in the next year, OMRDD will make Self Determination available to anyone who is eligible for OMRDD services. The pioneers in the pilot will make it easier for the rest of you to benefit from this new idea. When it's time for you to have your own budget and circle, BDS and other agency staff will be more ready to work with you and help you find, and live, your dream. But most people with developmental disabilities and their families have not been encouraged to think this way-that is, to see the future as wide-open and under their control, the way nondisabled people do. You may need to change how you think about yourself and your life, and it will take time for you to see the promise of this new thing and figure out how you want to use it.

To learn more, call Ken Dibble at STIC at 724-2111 (voice/TTY). You'll get some information and be invited to our Self Determination Task Force meetings to hear about what's being learned from the pilot. Meanwhile, start thinking and planning now. Your future is just around the corner!

The Work Incentives Improvement Act is a proposed federal law that could remove many bottlenecks faced by people with significant disabilities who want to work. It would let states extend Medicaid coverage for attendants, medications, and medical supplies/equipment to people with disabilities who aren't eligible for Medicaid because they became disabled after having worked, and therefore can only get Medicare. It would fund pilot programs to demonstrate that a gradual reduction of disability benefits as a worker's income rises would enable more people to go to work than the present all-or-nothing cut-off at $700/month. The bill would also extend Medicare eligibility for a longer period after a person gets a job. States would not have to adopt the Medicaid coverage provision, and in New York there might be a struggle to get that program in place. But that battle can't begin until the federal law passes.

In June the bill seemed headed for success. President Clinton had promised to sign it. The Senate's version, S. 331, passed by an overwhelming majority. However, to keep Senators Trent Lott and Phil Gramm from using their power to bury the bill even though most of the Senators wanted it passed, the provisions that paid for the estimated extra costs of the bill were taken out.

Meanwhile, after a lengthy struggle by activists, the House version, HR. 1180, was approved by the Commerce Committee, only to be dragged back into the shadows by the Ways and Means Committee, which was concerned with those extra costs. Though the bill had 225 (now 231) House sponsors, strong efforts by activists to convince the Committee to send the bill to the floor for a vote before the July 26 anniversary of the ADA, and then before the August recess, were brushed off. The bill was still in Ways and Means when Congress adjourned. Given the questions about costs in the House and the lack of a plan to cover them in the Senate version, chances for passage of the bill this year seem dim now. If you want to change that, contact these leaders and urge them to pass HR 1180:

Speaker J. Dennis Hastert 2263 Rayburn HOB Washington, DC 20515 (202) 225-0600 (voice) (202) 225-0697 (fax) email: dhastert@mail.house.gov

Minority Leader Richard A. Gephardt 1226 Longworth HOB Washington, DC 20515 (202) 225-2671 (voice) (202) 225-7452 (fax) email: gephardt@mail.house.gov

Bill Archer, Chairman Ways & Means Committee 1236 Longworth HOB Washington, DC 20510 (202) 225-2571 (voice) (202) 225-4381 (fax)

by Susan Link

When the first accessible fixed-route buses arrived in Binghamton I couldn't wait to try them. I was fortunate that I didn't have to wait for too long. When they first put the lift down I thought it was pretty neat how the ramp came from beneath the bus. Of course, they had me board the lift backwards. Obviously, they never saw me drive a power wheelchair before. I do not see very well driving backwards. The driver was very helpful. She gave me directions onto the ramp and into the wheelchair slot. The driver used tie-downs for my chair. Then off we went! The whole process only took a few moments.

What a ride it was! With no disrespect to the BC Lift or to their drivers that was the best bus ride I have ever taken.

Reality is this: On the BC Lift the wheelchair tie-downs are way in the back of the bus and there is nothing to hold on to. The drivers do try to be a little more considerate of people who use wheelchairs. Can you imagine a driver trying to do 20 mph on the highway? Talk about an accident waiting to happen. That could put a lot of people in danger. When you are sitting in the back of the BC Lift and the driver is only doing 20 mph it still feels like they are doing 40 mph over those bumps. If you have ever been in a wheelchair on the Lift you'll understand what I mean.

Then, the county received 17 new accessible fixed-route buses. Yes!

Let's face it, the BC Lift does the best that they can. They have a limited amount of buses, and a large disabled community they are trying to serve. At times, it felt like I had to learn to work around their schedules instead of living my life the way I would like. If that doesn't get frustrating! There were plenty of times I just gave up. Integration is an important part of living but not having accessible transportation really limits our mobility.

Yes, those horrible bus schedules. When I first saw them I thought they must be joking! They made no sense to me whatsoever! I will let you in on a little secret. I have no sense of direction. I might as well have been reading a different language. I called BC Transit and said, "HELP!" They helped me to figure out what bus I would need to take. Let's say you are a person with a visual disability. If you tell the driver where you need to go they will announce the stops.

Like everything else in life, the more you practice, the easier it gets. So pick up a bus schedule, get help if you need it, and start traveling. As the saying goes, "Boldly go where everyone else has gone before!"

by Pat Charma

Hello everyone!!

I hope your summer was enjoyable and relaxing. Mine was. I wasn't able to go on vacation. But, I think I'll be bringing in the new millennium with Mickey and Minnie Mouse!

With some hard work, Jeff Stevens was able to get open-caption movies at Loews Theaters in Vestal. There are three shows scheduled across two days for each open-captioned movie. Check your paper or ask the theater when the next show will be.

Some sad news: Wilma Bartlett passed away on April 6, 1999. My condolences to her ex-husband and friend and her family.

Everyone knows Monica Reese? Well, she is no longer in the area. She moved to Florida with her boyfriend Mike. We wish her the best luck and will miss her very much!

There are upcoming events in the Deaf community. I do not, however, have dates to pass along. If you have any questions or would like to know of any events, feel free to call me at STIC.

October 16, 1999
Ideal Bowling
Jennings Street, Endicott
Registration 12:00 noon
Bowling 2:00 pm
Dinner 5:00 pm

Bowling & Buffet
Adults - $18 Kids 12 and under - $10

Bowling only
Adults - $10 Kids 12 and under - $8

Buffet only
Adults - $10 Kids 12 and under - $7

Fans
Adults - $4 Kids 12 and under - free

by Linda Giese

If you are disabled and have stories, complaints, comments or suggestions about accessible housing in the Binghamton area, we'd like to hear from you.

Citizens for Accessible Housing is an informal group formed by myself and Erik Denk, City Councilman, after I had told him about my two-year search for a first floor apartment that could be modified for the wheelchair I needed.

While I was looking for a place I was occasionally told (by able-bodied people) that there is "plenty" of accessible housing in Binghamton. Since there is no directory of accessible housing in existence, I had no way of refuting this claim; and since I was not looking for subsidized housing, I didn't attempt to rent from Metro Interfaith, SEPP or other housing providers.

The original goal of Citizens for Accessible Housing was simply to create a directory of accessible apartments. We started out innocently by sending questionnaires to the managements of the subsidized buildings. The first reply, from ABC Housing, told us there are no accessible apartments in 100 Chenango St., the tower whose signs announce "Housing for the Elderly and Handicapped." I realized then that able-bodied people were probably looking at these big downtown towers and presuming that they were full of ADA-compliant apartments-though the buildings predate the law. Hence, the belief that there are plenty of accessible apartments.

My second eye-opening experience came when I was invited to look at an accessible apartment that had been renovated about 1994, and should have been ADA-compliant. There was no grab bar--in fact, no wall--next to the toilet; all the kitchen storage was overhead; the tenant paid the heat, but the thermostat was far out of reach of a seated person, etc. A disabled person living there would need almost round-the-clock help from an aide. We realized we couldn't rely on secondhand descriptions of housing to know if it made independent living possible, or impossible.

Our goal of creating a directory has changed to gathering information that will enable us to lobby legislators to 1) awaken them to some of the realities of accessible housing in the City and 2) suggest things that local government might do to encourage the building of more accessible units.

To reach this goal, we need to hear from tenants-people who've tried to find accessible housing-who've used VESID or City home modification programs-who are living in apartments that are advertised as wheelchair accessible. Is your housing adequate? If you want to move, what stopped you?

Anyone interested in this project may contact me by phone at 723-6713 (no calls after 9 pm, please; leave a message, I will return your call). Accessible housing is a broad topic and, as far as we know, no needs study has been done in this community. It would be extremely helpful to hear directly from disabled tenants about their housing issues so we can focus our efforts.

WHO CAN HELP?

STIC has lists of accessible public housing. When people who are selling or renting accessible private housing notify us, we keep that information on file. Call Laura at 724-2111 (voice/TTY) for that info. It's not practical to keep complete lists of accessible private housing because typically it's only accessible as long as a person with a disability occupies it. (The federal Fair Housing Act requires landlords to let tenants make housing accessible, at the tenant's expense, provided they follow the building code and can restore the unit to its original state when they move. Usually, landlords require restoration.)

We can also tell you about rent subsidies and housing laws, and give you house-hunting and landlord-tenant relations advice. We won't "find apartments" for you; we give you the information and skills you need to find your own.

WHAT ARE THE ISSUES?

Much existing "accessible" housing was built to pre-ADA standards, which weren't very accessible to people with severe disabilities.

There is no black-and-white rule that housing being renovated has to be made ADA-compliant; it depends on how large the complex is, how much renovation is being done, and how costly it would be to bring the unit up to code.

When new apartment buildings with 4 or more units are built, a percentage of the units must be accessible or "adaptable" (with simple modifications that don't involve carpentry or much expense, the apartment can become accessible). Problem is, few new apartments have been built in the area recently.

Information & Resource Group for People
Who Are Blind or Visually Impaired

Meets: Every Monday 11:00 am
Contact: Theresa Northup 724-2111

TBI Support Group

Meets: Every Tuesday 11:00 am - 12:30 pm
Contact: Mary-Ellen Kelleher 724-2111

Parents Empowering Parents (PEP)

Meets: Every Wednesday 9:30 am - 11:00 am
Contact: Jo Anne Novicky 724-2111

I Have a Dream Self Advocacy Group

Meets: 2nd. & 4th. Wednesday of the month
Contact: Susan Link 724-2111