AccessAbility

by Maria Dibble

As usual, I've missed the deadline for getting this written. It's becoming a habit.

You see, Eddie has been an acquaintance of mine for over 15 years, and we make it a point to get together once every three months or so. Whenever possible, however, I do try to pawn off the meeting onto someone else (usually this newsletter's esteemed editor), because meetings with Eddie take hours and usually mean quite a bit of work for me. No luck this time, though; I had to do this meeting myself.

Well, first of all, one of the major reasons Eddie was late this time was because he and I have been working very hard to see Medicaid Buy-In legislation (the Work and Wellness Act) adopted by the NY legislature and then signed by the Governor. We have been experiencing some success.

The Assembly will have already passed the bill by the time you read this, and hopefully, the Senate will have as well. The Assembly has been a very strong supporter of this legislation from the beginning of the budget cycle, realizing the critical need for people with disabilities to be able to keep their Medicaid coverage when they get a job. It's a bill that makes sense: it gets disabled people back to work (we have a 70% unemployment rate); it adds to the tax base; and it can actually save money since other health insurance policies would have to be used first and, depending on income, people with disabilities would also pay a premium.

The Senate now has 5 sponsors, including Tom Libous and James Seward. We met with Senator Seward in March and urged him to review the bill and introduce it in the Senate. He said he would give it strong consideration, and apparently he did. We provided lots of information and encouragement to Senator Libous over several months, also with good results. We are especially grateful for these Senators' support, since they represent the 3 counties of STIC's service area. Their sponsorship is a truly great boon for the disability community and we thank them both very much.

The Governor's office has been delaying further progress on the bill, claiming, "the price tag is too high". Advocates asked to see their figures but they would not let us review them. Yet the Governor himself, at a press conference in September 1998, said, "The challenge is clear: disabled individuals in New York State want and deserve to work, and we intend to see that they succeed in doing so. We want to enhance access to employment for persons with disabilities, but for this to happen, we need to build assurances into the system so that persons with disabilities who collect SSI or SSDI can work without fear of losing their health insurance and other critical benefits." We'd like the Governor to live up to his own words and sign this bill into law when it reaches his desk. Hundreds of thousands of voters with disabilities, as well as their friends and families, will be very appreciative of such a demonstration of support for their issues.

Just as I was about to leave to meet Eddie, I got a phone call about our golf tournament. For a variety of reasons unrelated to STIC, we lost $4,500 in sponsorships this year, and we're scrambling to recruit new sponsors for the event. Sponsors get lots of recognition, and can select levels from $100 to $2,500. The highest amount entitles them to a full-page ad in this newsletter. Call STIC if you have any suggestions or leads on a potential sponsor.

Eddie and I rescheduled our appointment. Just as I sat down with him, I got the exciting news that the 35 Independent Living Centers in NY State received a $1 million increase in the recently passed budget. We haven't seen increases two years in a row since the 1980s. This was such great news that we just had to go tell all our friends, thank all our supporters, and celebrate.

It may seem that I don't consider my times with Eddie as important as my other responsibilities. The truth is, I sometimes just don't know what to talk to Eddie about. STIC is working on so many issues, and there are pros and cons to writing about each. We must consider our timing in releasing information: Whom will we anger? Who will support us? What strategies are we using to promote our agenda? Topics of our discussions are chosen with care, since past experience shows that the results of our meetings can be controversial and also have tremendous impact, a thing not to be abused or taken lightly. In fact, there's a very important issue that you aren't reading about here because those responsible haven't had a chance to discuss it with us and come to a resolution.

When Eddie and I finally met, we talked about all of the issues mentioned here. We also spent some time strategizing about the best ways to fight the most recent threats to the ADA, but we deferred that matter to those more knowledgeable than us, and you can read more about it here and here.

Inevitably, as always, our conversation got around to how to balance the growing need to provide direct services to consumers with the very urgent need for more community and systems change. While we did not resolve this dilemma, we did decide to use some of next year's budget increase to hire a part-time Systems Change Coordinator. As you know, we already do much advocacy around many issues. A coordinator will help us use resources more efficiently and effectively, can get information out to staff and the public quicker, and can keep apprised of more issues than those of us who have many different responsibilities.

The meeting ended on that highly positive note. We're excited to be planning a more active approach to advocacy, and we intend to be an even more formidable force for change than ever before.

When the Individuals with Disabilities Education Act (IDEA) was first passed a quarter-century ago (then called the Education of All Handicapped Children Act), Congress said it would pay 40% of the costs. That has never happened. Currently the federal government provides about 13% of the costs of special education. But now there are bills in both the House and Senate to gradually bring the feds' contribution up to the full 40%. HR. 4055 and S. 2341 would reach that point by 2010. A competing Senate bill, S. 2355, would do it in 5 years.

The National Council on Disability recently released a report, Back to School on Civil Rights, that found that across the nation, IDEA's "least restrictive environment" and supports and services requirements are ignored by schools and not enforced by either state or federal government. Certainly funding the full federal share would make compliance easier for some school districts. Many districts claim that they have to make tradeoffs between improving regular education by lowering class size and bringing technology into the classroom, and funding special education. However, most districts define special education as segregated classes in separate buildings with dedicated staff. Full inclusion would cut those costs considerably, making that argument moot.

In any case, the pending bills are just like the original IDEA; they authorize spending but don't appropriate money. And, like IDEA, they can be ignored when the money is actually being dished out. Still, if these bills pass in both houses (HR. 4055 has passed the House) and are signed by the President, all the parties involved will be on record as favoring full funding, and this can be used to embarrass them if necessary.

For over a decade Greyhound has fought tooth-and-claw against making its buses accessible. They got a special exemption for over-the-road (OTR) buses in the ADA, which basically prevented any requirements from even being issued before 1998. Then, when the federal Department of Justice (DOJ) finally issued its regulations, Greyhound and other OTR bus companies got another 12 years in which to become fully accessible. Still not satisfied, Greyhound got its lobbying organization, the American Bus Association (ABA), to sue DOJ, claiming that the federal government lacked authority to regulate bus accessibility. Through it all, Greyhound badmouthed the disability community, threatened to cut service, tried to trick black civil rights activists into opposing access, and mistreated and abused disabled customers. At last, though, Greyhound's bad attitude has blown up in the company's face.

Last year DOJ collected hundreds of complaints from bus riders with disabilities, selected 14 representative ones, and sued Greyhound. These complaints were similar to those that ADAPT identified in its survey of bus riders a couple years ago: Riders were refused service, dropped while being carried onto or off buses, kept from using the bathroom at rest stops, and verbally abused by drivers and station staff. While Greyhound claimed that only 14 problems out of millions of passengers was meaningless (ignoring the hundreds that DOJ left out of the suit for brevity's sake), the ABA suit had already been thrown out of court and the company finally realized the jig was up. They settled, under terms that require Greyhound actually to move faster than any other OTR company to make their service accessible.

The DOJ regulations require all OTR companies to begin providing buses with lifts on 48 hours' notice on October 28, 2001. But Greyhound has to do that right now on all routes, unless there are sudden breakdowns, a suddenly substituted driver isn't trained to operate the lift, there is unusually high demand for accessible buses, or if providing the service at a certain site would be "very costly." Call Greyhound at (800) 752-4841 48 hours before your trip to schedule an accessible bus. Greyhound has a disability advisory committee, and must train all its employees, provide dispute resolution service, and inform disabled passengers of their rights. Beginning October 28, 2001, Greyhound must provide lift-equipped buses on 48 hours' notice everywhere, no excuses, and every new bus it buys must have a lift.

Other OTR companies (Trailways, Shortline) aren't affected. For them, accessible service on 48 hours' notice begins Oct. 28, 2001, half their buses must be accessible by 2006, and all must be accessible by 2012.

The Medicaid Community Attendant Services and Supports Act (MiCASSA) has finally been introduced in both houses of Congress. Congressman Danny Davis of Illinois introduced MiCASSA in the House of Representatives in late May as HR. 4416. Representative Rob Andrews of New Jersey has said he wants to co-sponsor it. MiCASSA was introduced in the Senate last November as S. 1935 by Senators Tom Harkin (D-Iowa) and Arlen Spector (R-Pennsylvania).

MiCASSA lets people who are eligible for Medicaid-funded long-term care services in a nursing home or Intermediate Care Facility for people with mental retardation (ICF-MR) choose whether to get those services in an institution or in their own home. This is needed because federal Medicaid law requires states to offer nursing home care but doesn't require home and community-based long-term care. While New York State does offer a variety of home and community-based programs, MiCASSA would go far beyond current services available here.

MiCASSA Provisions

• Provides community attendant services and supports such as assisting with eating, using the toilet, grooming, dressing, bathing, transferring, meal planning and preparation, managing finances, shopping, household chores, phoning, participating in the community, and health-related functions.
  
  
• Includes hands-on assistance, supervision and/or cueing, as needed, as well as help to learn, keep and enhance skills to accomplish such activities.
  
  
• Services must be provided in the most integrated setting that meets your needs.
  
  
• Services and supports are chosen by you and furnished according to a service plan agreed to by you and based on an assessment of functional need.
  
  
• Services can be provided in any home or community setting, including school, work, recreation or religious facilities.
  
  
• You can choose from various service delivery models including vouchers, direct cash payments, fiscal agents and agency providers, all of which are required to be consumer-controlled. Any model can include voluntary training for you on selecting, managing and dismissing attendants.
  
  
• If you are unable to direct your own care independently, MiCASSA lets you authorize a representative to assist. A representative might be a friend, family member, guardian, or advocate.
  
  
• MiCASSA lets health-related functions or tasks be assigned to, delegated to, or performed by unlicensed personal attendants.
  
  
• It covers your transition costs from a nursing facility or ICF-MR to a home setting, for example: rent and utility deposits, bedding, basic kitchen supplies and other necessities required for the transition.
  
  
• It serves people with incomes above the current institutional income limitation-if a state chooses to waive this limitation to enhance the potential for employment.
  
  

MiCASSA lets states limit the total amount they spend on long term care in a year under MiCASSA to the amount they would have spent on institutional services for the same people during the year.

MiCASSA provides grants to help states move from institutionally dominated service systems to ones focused on community services and supports. Each state would have a Consumer Task Force to plan the changes. Most of its members must be people with disabilities or their representatives. The federal government would also review regulations and financing systems to identify where changes can be made.

MiCASSA includes the best of NY's existing programs while adding improvements. It offers the consumer control of Consumer Directed Personal Assistance, but lets you vary the amount of responsibility you take on, and has potential for 24-hour care, since the only limit is that MiCASSA services cost no more than the institution you'd otherwise be in. MiCASSA covers everything OMRDD Day or Residential Habilitation offers but lets you control who provides the services and how. It helps anyone with a disability with the costs of moving from an institution to their own home, which OMRDD does today only for people with developmental disabilities.

MiCASSA needs your support. To learn how you can help, stay tuned here, and at STIC's website:
(www.stic-cil.org)

(from U.S. Newswire, provided by Justice for All)

A Harris Poll online survey confirms that people with disabilities trail other Americans in their participation in the lives of their communities-but finds the Internet is playing an increasingly important role in reducing this gap. The survey was conducted by Harris for the National Organization on Disability (NOD) and sponsored by Aetna U.S. Healthcare.

"Online opportunities are expanding the horizons of people with disabilities," Harris Poll Chairman Humphrey Taylor told hundreds of disability advocates, leaders of national organizations, and more than 20 members of Congress at a press conference to announce the poll. "The Internet appears to be a powerful counterweight to social isolation." 48% of people with disabilities say the Internet has significantly improved their quality of life, compared to 27% of nondisabled people. Computer users with disabilities reported spending nearly twice as many hours online and using e-mail as others did.

The usual cast of characters in the House of Representatives is making another slashing attack on the Americans with Disabilities Act (ADA). What is it this time? The "ADA Notification Act". This bill would require anyone who files an ADA lawsuit (only against private businesses) to provide 90 days' notice to the business that they plan to sue. If such notification isn't filed, the court will "impose an appropriate sanction upon the attorneys involved".

On its face, the bill appears to be a "courtesy" intended to prevent unsuspecting small businesses from being "blindsided" by expensive lawsuits. However, the ADA is ten years old and has been well-publicized. Any business should already know about the law and have taken steps to comply with it years ago. Also, the first thing any advocate or attorney does in a situation like this is contact the business, tell them what the violation is, and urge them to comply without going to court. "Blindsiding" just doesn't happen.

The real purpose of the bill is to create a chilling effect among attorneys, many of whom will be frightened by the potential "sanctions" for not meeting the bill's technical notification requirements. The bill is even more dangerous for advocates who file their own suits and may not even be aware of this bill's existence.

The bill, HR 3590, is before the House Judiciary Committee. We don't think there's a companion bill in the Senate yet. It does not seem like the sort of law Bill Clinton would sign if it gets to him, but if it's delayed and Bush is elected President, he would probably sign it. So, you need to act. Contact your Representative and say, "Oppose the ADA Notification Act, HR 3590, and write to the leadership on the Judiciary Committee and tell them you oppose it."

As predicted in these pages, the US Supreme Court has once again granted review to a case that threatens the Americans with Disabilities Act (ADA). Written arguments are due to the Court by June. Oral arguments will probably take place when the Court reconvenes in the fall, with a decision expected sometime in early 2001.

The case is known as Garrett v University of Alabama. However, two similar cases, Garrett and Ash v Alabama Department of Youth Services, were actually combined here because they address the same issues. Both Patricia Garrett, who has breast cancer, and Milton Ash, who has severe asthma, alleged disability-based discrimination by organs of the Alabama state government. They both sued under Title II of the ADA and Section 504 of the federal Rehabilitation Act, which prohibit such discrimination by states. They both lost in federal District Court and appealed to the 11th. Circuit. The Circuit's action was short and sweet: because this Court had already ruled in favor of a similar plaintiff in Kimel v Florida (see our last issue), the judges simply overturned the District Court decisions. However, the State of Alabama appealed this ruling to the Supreme Court, which is why it is a problem for us.

And what's the problem? The same as last time: Did Congress adequately justify abrogating states' immunity from lawsuits under the 11th. Amendment? The 14th. Amendment, enacted after the Civil War to deal with southern states that were denying voting rights to freed slaves, gives Congress the authority to do this. Subsequent court decisions found that to exercise this authority, Congress must clearly state its intent to abrogate, and provide sufficient evidence that it is trying to "right" a previous "wrong". In Garrett, the 11th. Circuit pointed to language in the ADA that specifically abrogates the 11th. Amendment, and said that Congress' finding of pervasive discrimination against people with disabilities was enough to define a wrong that needs righting. However, recent decisions by other Circuit Courts, including the latest, Melinda Erickson v Board of Governors of State Colleges and Universities for Northeastern Illinois University in the 7th. District, have found that Congress did not present enough evidence of deliberate discrimination against people with disabilities specifically by state governments to justify the broad remedies in the ADA and Rehab Act.

You'll recall that this was the issue in two cases that were on their way to the Supremes earlier this year (see last issue). Those cases were within the Clinton-Gore (Arkansas) and Bush (Florida) spheres of influence, and the parties were induced to settle so a potentially unfavorable decision would not cloud the Presidential hopes of either candidate. This case is not reachable by either camp. At any rate, George W. Bush seems to have a negative position on disability rights: he refused to take the state of Texas, which has one of the most institution-heavy disability service systems in the nation, off the states' rights brief in the Olmstead case; his disability campaign rhetoric falls squarely into the "let's be sure to take care of these poor unfortunates" category; and he and his staff have refused repeated requests from several sources to issue position papers on, or discuss, disability rights issues. It would seem the intervention by his brother, Florida Governor Jeb Bush, to get the previous case settled had more to do with preserving the legacy of their father, ADA-signer George Bush, than with Candidate Bush's views.

So, everything we've been saying about previous challenges to Title II still applies. If the Court overturns the 11th. Circuit, the result may be that the ADA will no longer be able to compel state or local governments to do anything. They will be free to discriminate in hiring on the basis of disability. They won't have to abide by Olmstead-based orders from the federal government to serve people with disabilities in the most integrated setting, or even to provide any community-based services at all. They won't even have to make their buildings and programs accessible.

What can you do about it? We're not sure. By the time you read this, the deadline for getting material to the Court will have passed. Watch our website (www.stic-cil.org) for developments; if there is some action you can take, we'll tell you there.

Here's what people tell us:

"I used to be a construction foreman but I got a head injury in a car accident. I use a wheelchair and I need somebody to help me bathe, dress, use the bathroom, and cook my meals. I knew I couldn't get around a construction site anymore, so I went back to school and got a degree in graphic design. There's companies interested in hiring me, but if I take one of those jobs after a few years I won't be eligible for Medicare. Some of those jobs have medical insurance, but it won't pay for the attendants I need to come into my house every day to keep me alive. So here I am, ready to go back to work, and I can't."

"I was born with cerebral palsy, and I live in my own apartment with a lot of help from the agency. They helped me get into the supported work, and they found me a great job answering phones in an office. I really like the job, and they like me and they want me to go full-time. But my job coach told me that my Medicaid pays for all the help I get at home to take a bath and manage my money and stuff, and if I make any more money, they'll take away my Medicaid."

This is what the federal Work Incentives Improvement Act of 1999 was intended to fix. To fix it though, each state has to adopt the Medicaid Buy-In program that's in the Act. Language implementing the Buy-In was in New York's 2000-01 budget right up until the final negotiations, when it was dropped by the Big 3-Governor Pataki, Speaker Silver, and Majority Leader Bruno. Bills were swiftly reintroduced in both houses of the Legislature after the budget passed, and a very effective coalition of disability advocates including all the organizations representing Centers for Independent Living, AIDS and mental health activists, and other groups, began a barrage of letters, phone calls, lobbying visits, press conferences, and rallies. As a result, the bills gained a large list of supporters in both parties. Then, when Rudolph Guiliani bowed out of the Senate race, his replacement, Congressman Rick Lazio, who was a major supporter of the Work Incentives Act, began pushing Republican hold-outs to get behind the bill. However, at this writing Governor Pataki was still wavering and enactment was not yet certain.

The Medicaid Buy-In will let people with disabilities who work and aren't ordinarily Medicaid-eligible pay a fee, like an insurance premium, for Medicaid coverage, on a sliding scale. As proposed in NY's Work and Wellness Act (Assembly Bill A.10159, Senate Bill S.7392-A), people would be able to buy into Medicaid with incomes of up to 400% of the federal poverty level while holding up to $40,000 in assets. Total annual premiums could equal no more than 7.5% of the person's gross income.

Those are big numbers. Should some guy who makes $60,000 or $80,000 a year be able to do this? And how much is it going to cost New York State in the long run?

Well, suppose the guy gets 40 hours per week of attendant services for which the state pays $16/hour. That's $33,280 just for attendants, and that's at the low end of the rate spectrum. It doesn't include prescriptions, medical supplies, or equipment such as wheelchairs and lifts-costs that could easily eat up another $10,000 or $15,000 a year. And let's not forget that incomes this high only stay under the 400% of poverty threshold for families with children. So, conservatively estimated, without the Buy-In, you're asking a guy with a family of 4 or more to get by on a gross income of between $16,720 and $31,720. Does this sound like a life of luxury to you? With the buy-in the guy will pay annual premiums of between $4,500 and $6,000. His gross will then be between $55,500 and $74,000, which is comfortable for a family of 4 to 6, but hardly luxurious. And remember, he's getting that high salary because he holds a very difficult or responsible job. His pay should reflect his position, and he should be able to spend it the same way nondisabled people with similar incomes do. He shouldn't have to use most of it for medical and support services. Otherwise, what incentive does he have to work that hard? Here are a few more important points: First, he will only use Medicaid for services that the health insurance provided by his employer doesn't cover. Second, the vast majority of people who will use the Buy-In are already on Medicaid and New York State is picking up the tab, without premium payments. Third, a guy who makes that kind of salary pays a lot of income tax to the state. The same guy, without the Buy-In, won't have a job and won't pay any income tax, but he will still incur the same Medicaid costs.

The Governor's office and others say they're concerned about cost. We've heard annual estimates ranging between $14 million and $60 million, but the critics refuse to explain where they got these numbers, which are a tiny percentage of New York's annual budget. New York's 35 Centers for Independent Living did their own analysis, based on data provided by the State. We found that if all the New Yorkers with disabilities of working age who are unemployed got jobs, the resulting Buy-In premiums, income tax revenues, and cuts in welfare costs would produce $2.4 billion annually to pay for the Buy-In. That's an optimistic figure, of course. It's unlikely that all unemployed people with disabilities would get jobs, and some of the welfare savings do include federal dollars. But even if only 3% of the projected Buy-In revenues and savings ever materialize, that will be more than enough income each year to cover the highest cost estimate we've heard. Even with significant start-up costs and slow growth in the number of people who get jobs, it seems quite certain that the Buy-In will produce more revenue for the state than it will cost within 2 years of its initiation. With no explanation from the bill's detractors on how they calculate costs, we must conclude that their case is without merit. A full explanation of our numbers appears in the Disability Action Agenda 2000 (AccessAbility, Spring 2000).

15 states have already adopted the program. 16 more states are working on legislation to adopt it. The NYS Assembly will have passed its version by the time you read this. Several prominent NY Republicans support it, including Senate Insurance Committee Chairman James Seward, Senate Social Services Committee Chairman Ray Meier, Senate Health Subcommittee Chairman Kemp Hannon, Senate Steering Committee Chairman William Larkin, Jr., Senator Marchi, and others. Governor Pataki has endorsed the concept (see our Editorial) and called for early passage. Most recently, Senator Thomas Libous, Chairman of the Mental Health and Developmental Disabilities Committee and the Senate Select Committee on People with Disabilities, informed us that he plans to co-sponsor the Senate bill.

With all these influential people on board, it seems likely that a bill will pass. The only question is, will the Governor sign it?

It's Not A Dream, It's Your Life!

We aren't going to say Self Determination is about living your dream anymore. Too many people got the wrong idea. Some figured it was pie-in-the-sky. Others started talking about welfare cheats and scam artists wasting taxpayers' money. So, enough about dreams. Self Determination is not about having a pretty dream. It's about getting a shot at having anything and everything anybody else has. As Tony Phillips, President of the Self Advocacy Association of NY, says when asked what he wants out of life, "We want what you got!"

If you have a developmental disability, or are a friend or family member of a person with a developmental disability, you should be thinking about Self Determination.

Self Determination is nothing less than letting people with developmental disabilities plan, control, and live their own lives the way the rest of us do. You get a budget, and you and those people who are important to you decide how to spend it for housing, food, access improvements, transportation, recreation, and help getting a job or creating a business. Self Determination lets you be as creative and innovative as you can be. You don't have to purchase anything from any "approved provider", but you can if you want. You don't have to live in a group home, but you can if you want. (We've never met anyone who, given a choice between a group home and getting all the supports and services they need in their own home, chose a group home though.) It can be as simple or as complicated as you need it to be.

What are the minimum requirements to participate in Self Determination?

You must be eligible for OMRDD services. You must have a circle of support consisting of people chosen by you who are committed to helping you plan and achieve your life goals. Your circle can't be just staff of the agency that provides most of your services. You and your circle must complete a written plan and budget, which will have to be approved by OMRDD officials.

What age groups can participate?

OMRDD official policy is that Self Determination is available to people of all ages. Right now, several local OMRDD offices, including Broome Developmental Services (BDS), are in the "pilot" stage; they are testing and learning how to do Self Determination. During the pilot, the local office can restrict who can participate. BDS has restricted the pilot to adults aged 18 or older. OMRDD expects to make Self Determination generally available in September. After that, each local office will decide when it is ready to open it up to everyone. BDS will probably do that once the majority of its pilot participants have finalized their plans and budgets and are starting to carry them out. We'd guess that might be some time in early 2001.

Is this only for "high-functioning" people?

Absolutely not. No matter what their ability to communicate, every person with a developmental disability has likes and dislikes, needs and abilities. The people closest to them know what those things are, and they can work together to create a plan that reflects them.

Do I have to be eligible for Medicaid?

No. If you are eligible for OMRDD services, if necessary your budget can consist entirely of non-Medicaid NYS funds.

Can I use Self Determination if I'm on the NYS CARES list?

Oh yes. Many people think the only option for people on the NYS CARES waiting list is to move into a group home. That's not true. OMRDD has made it very clear that people on the NYS CARES list can choose from among any of OMRDD's residential support service options. While BDS is still in the pilot stage, you'll need to start by requesting "Waiver Services and Supports" and "Home of Your Own Training" to live in your own home or apartment. A good service coordinator can help you get things set up. A service coordinator who tells you "that's not possible" is not a good service coordinator. Shop around! Then, when Self Determination becomes generally available, you can be "transferred over".

Can I buy a house or a car with Self Determination money?

Yes and no. Self Determination uses lots of different sources of money. Some sources, such as Medicaid, can't be used for these purposes. Other sources can be used to some extent. For example, you may not be able to buy a vehicle, but you will be able to lease one and get it modified if necessary. You can also pay a friend or neighbor to drive it for you. You can't use Medicaid to buy a house, but you might be able to use it to cover closing costs, and you can use your SSI and job income for down and monthly payments. You can work with organizations like Habitat for Humanity to purchase housing at very low cost. Also, OMRDD has programs to help people get low-interest loans, find suitable housing, and subsidize your down payment. So, yes, having your own house and car are very feasible under Self Determination. Remember, though, budgeting can involve hard choices. Just like most nondisabled people, you may not have enough money for everything you want. You'll have to think carefully and make compromises. That's what real life's all about!

Can I change my plan if my needs change?

You sure can. You can change your goals or your budget. You can even get your budget amount category changed. All changes will have to be justified by you and approved by the local office.

Is this really safe?

It is as safe as you and your circle make it. When you write your plan, you will have to address your personal health and safety issues, and you'll have to do it in a way that inspires confidence when the local office reviews your plan for approval. You can build in things like nondisabled roommates or paying people to check up on you, and help with things like budgeting and shopping. That doesn't mean you'll have to be unnecessarily restricted. STIC strongly urges EVERYONE who has a developmental disability and wants OMRDD-funded services to undergo a competency hearing in court, even if you have an IQ of 140 and a college degree. If you are declared legally competent, you then have unbeatable ammunition for fighting any attempt by OMRDD or the local office to restrict your life on "safety" grounds. If you are not fully legally competent, the judge will decide the areas in which you can make your own decisions, and the areas in which you'll need some help. This can become the basis of your health and safety plan, and it will keep OMRDD from restricting you any more than is absolutely necessary.

What's to keep people from frittering away the government's money on luxuries and junk?

There are some pretty clear rules about what things can and can't be paid for with Self Determination. Your budget will be quite detailed, and it will have to be approved by the local office. Expensive or unusual items may well be legitimate purchases for you, but you will have to explain clearly why you need them. The local office won't approve any unjustified expenditures. Then, the checks will be written by your Fiscal Intermediary, a kind of accountant service, that will verify that only items in the approved budget are being paid for. Auditors will also periodically check to see that you've actually received what's been paid for.

Isn't this just a way for OMRDD to cut costs and force responsibility for services back onto families?

No, it is not. OMRDD is committed to providing large amounts of money to support people's plans. The top funding category for people who are seeking both residential and activity supports and who will not live with their families is $81,404 per year. The bottom category for such people is $44,036. These amounts will grow with inflation. These categories are based on individual needs, and if necessary and well-justified, the amounts can be increased, up to a maximum of about $123,000 per year. You can also get additional one-time startup funds to set up a home or apartment. And, you can hire a service coordinator or service broker to manage things for you if that's what you need.

This is plenty of money, and service coordinators and brokers can do much of the work. But yes, there is a shift of responsibility. It's about getting your own life, and that means you are responsible. Not necessarily your family or friends, though the people in your circle of support will have an important role to play. It's up to you to hire good service coordinators and brokers, make sure they are doing your bidding, and, if necessary, fire them if they aren't. It's up to you to believe in yourself and your plan and push the members of your circle and your employees to get things done. It's up to you to think carefully about what you need and want out of life and make the compromises that anybody who lives on a budget has to make. This isn't foisting off responsibility. This is what nondisabled people do all the time. This is real life in the real world. That's what we all want for our children, isn't it?

Is this a fad or can I count on Self Determination to last?

This is no fad. These changes are being implemented in various forms all across the country. In New York State today there are nearly 100 participants in Self Determination, and there are hundreds more just waiting for this option to become generally available. How far and fast it spreads is really up to you. If you want to control your own life, you have to ask for Self Determination. For more information, call David Mayo at Broome Developmental Services, (607) 865-6551. (Yes, it's a Walton number, but that just happens to be the office Dave works out of. He is the "Self Determination guy" for all of BDS.)

1. Make sure the founders are people with backgrounds in special education, social services, and other helping professions, people who have never faced discrimination as a person with a disability, fought back, and moved ahead with their lives. Once the founders agree upon an organizational direction, survey the group to see if anybody is willing to confess to having a disability. If not, find some mild-mannered people with disabilities to comprise a majority of the board. You are on your way to establishing an embarrassment to the Independent Living movement.

2. Hire an executive director with a background and mindset developed in the social service/human service arena, who has not experienced discrimination as a person with a disability, fought back, and moved ahead with his/her life. He or she will have no problem taking your CIL down the path of social services.

3. When hiring independent living specialists, peer counselors, program directors, etc., make sure you require a college degree-BA, MA, BS, etc. Ignore the fact that advocacy and peer support are nurtured in personal experiences, not college classrooms. Exactly what degrees are relevant to advocacy and peer support? Here's a hint, NONE. As you set up these artificial barriers, you are eliminating a vast pool of qualified applicants with disabilities who never graduated from college, and in many situations, never attended any college. What sort of degrees does ADAPT require to participate in an action?

4. Provide minimal reasonable accommodations. Provide what ADA requires-interpreters, alternative formats, etc. If an applicant or employee needs a personal assistant on the job, make them pay for it. If you look hard enough, you can probably find a justification in Title I of the ADA to deny staff members PAs as an accommodation. You have effectively eliminated some of the most severely disabled applicants from working for you.

5. Ignore the history and the wisdom of Ed Roberts and the original CIL at Berkeley. One of his great statements was that Independent Living should focus on "Advocacy, Advocacy, and Advocacy, but not necessarily in that order." He understood that issues facing people with disabilities are sociological, political, cultural, and economic. Hence, so are the battles.

6. Confuse advocacy with education. Understand that "advocacy won't work in this community," as we have all been told. If you simply tell people what they are required to do, they will do it. Education is not advocacy. Wash your hands and believe you've met your obligation. Advocacy basically amounts to having an active role in holding your community accountable for removing barriers that inhibit full and equal participation by people with disabilities. CIL staff are paid to be advocates. Nobody else is going to hold your community accountable. Additionally, of course, advocacy is relevant to focusing on changing legislation, policies, and practices that tend to limit persons with disabilities in their pursuit of independence.

7. Pursue funding that tends to inhibit advocacy and compromise Independent Living philosophy. Take lots of corporate money, let them stamp their corporate logo on your programs or projects. Don't concern yourself with whether or not the corporation violates the rights of people with disabilities. Don't think in terms of growth in the context of the rich history and traditions of the founders of the Independent Living movement, just grow and increase that budget.

8. Believe that our civil rights will take care of themselves. In 1977 the battle was to get the regulations implementing Section 504 of the Rehabilitation Act finalized and published. That battle was won. However, Section 504 never was pushed by advocates once the regulations were signed. Getting legislation and regulations passed is step one; holding covered entities accountable is equally important. Covered entities are not going to gleefully comply with our civil rights laws.

9. As executive director, blame your board, your staff, or any other scapegoat for ruining your CIL. The executive director must have a good grasp of the rich history and philosophy of the Independent Living movement. The executive director must be able to persuade the Board of what does and does not fit within a CIL. Persuade your Board, confront your Board, and, if necessary, bring in help from other CILs to meet with your Board.

10. Don't share these ten items with your staff or Board.

This little gem came from the Summer 1999 issue of IMPACT on Equal Access, the newsletter of IMPACT Inc., a CIL in Alton, IL. We think it's an entertaining way to explain what a CIL like STIC is, by showing what it should not be. STIC probably lives up to about 90% of the ideal image presented here. After all, nobody's perfect. And there are a couple points that don't seem to apply to us, or with which we disagree. For example, we think federal CIL money ("Part C") is more likely to corrupt IL philosophy than corporate money. It does give us all something to think about, though. Finally, we'd add a Number 11: If you're a nondisabled executive director, park in one of your CIL's handicapped parking spots.

by Carrie Watkins-Smith

I am the new Interpreter Services Coordinator. Some of you may remember me from a few years ago when I worked under Jody as the assistant. I also completed my internship here at STIC.

I have been here for four months and have enjoyed my job thoroughly. I must admit I do have big shoes to fill though! I would appreciate any feedback as to how I am doing so I can better serve our community and consumers.

My job specifically is to coordinate the assignments of interpreters. STIC has so much to offer, like bulletin boards where anyone can come during our business hours and get information on Deaf cultural events, interpreter training opportunities, and job announcements. We also have a free lending library of books and videos on ASL and deafness. STIC is currently working to get everyone on-line; however, right now we only have one computer with internet access for all of the employees to share. With my work schedule being so hectic it is hard for me to find a time that I and the computer are available; therefore, I ask that if you would like to send me email please send it to my home email at chadder@exotrope.net. By sending it to this email address, I will be sure to get it and can respond in a timely fashion.

Since I have started here, I have been involved with the D.E.A.F organization and the Deaf Club. I also am working in the community in private practice and look forward to seeing and meeting everyone.

I feel that we here are a great group of people and community. The interpreters and Deaf community have made me feel like a team player. I appreciate the warm welcome that I have received. I look forward to spending a lot more time with you, and to our future together.

CALL
724-2111 (voice/TTY)

September 2, 2000
6th. Annual Picnic
Chenango Valley State Park
10 am

September 16, 2000
Social 6 pm
Meeting 7 pm

October 14, 2000
Halloween Party
6 pm

November 11, 2000
Thanksgiving Party
6 pm

December 2, 2000
Christmas Party
6 pm

New Pay Phone TTY

As a result of D.E.A.F.'s advocacy efforts, the Town Square Mall is installing a new TTY pay phone. They expect it to be up and running by the time you read this.

711 Relay

Using the TTY Relay just got a whole lot easier. The Relay has a new number: 711. It works just like 911; no area code, no long numbers. Just 3 digits. And, this number is the same for both hearing and deaf customers. Are you Deaf? Want to call the Relay? Dial 711. Are you hearing? Dial 711.

There is just one word of caution. Digital (PBX) multi-line phone systems, such as those used by large companies or offices, may have to be "programmed" to dial the number, just as they must be programmed to dial 911. If you just have a regular phone, you don't need to worry.

by Darlene Dickinson

Hey! STIC has a new club just for girls 10-13 years old! It's called "The Rock", and it's about making new friends, doing "chick stuff", and having fun. It's also a good place for girls with disabilities to say what's on their minds and get support and feedback from each other. If you want more information about The Rock:

CALL
STIC @ 724-2111 (voice/TTY)
Ask for Julie or Darlene

Michael J. Mackin, Chairperson
George E. Pataki, Governor
Sheila M. Carey, Executive Director

New Yorkers with developmental disabilities currently enjoy the best service and support delivery in history.

The New York State Developmental Disabilities Planning Council (DDPC) has helped make this exceptional level of service possible by developing innovative new ways to improve the delivery of supports and services to New Yorkers with developmental disabilities and their families.

The DDPC develops and implements grant programs that fund such activities as:

• Demonstration projects
• Training for families and staff
• Outreach to underserved populations
• Support to communities
• Interagency coordination
• Systems design and redesign

To a large extent, DDPC projects are developed in direct response to the concerns and ideas voiced by consumers, families, service providers and policy-makers. This insures that DDPC programs accurately reflect the needs of consumers and their families.

Last year, the New York State Developmental Disabilities Planning Council listed the following accomplishments:

• Nearly 14,000 New Yorkers with developmental disabilities were served under DDPC demonstration projects.
• The DDPC educated over 1,000 policy-makers on issues of concern.
• DDPC efforts impacted over 1700 programs or policies.
• Approximately 4,000 more people became involved in systems advocacy or facilitating change.

NYS Developmental Disabilities Planning Council
155 Washington Avenue, Second Floor Albany, New York 12210
Phone: 1-(800)-395-3372 Email: ddpc@nycap.rr.com
Visit our website at: ddpc.state.ny.us

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

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

Parents Empowering Parents

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

VEG-E-TABLE-homegrown veggies with easy accessibility-Raised garden beds up to 4'x 8' with 11' soil depth. Garden sitting or standing-ideal for yard, patio, or deck. For information call George, who himself is visually- and mobility-impaired, at (607) 843-9853 (Oxford, NY).