AccessAbility

by Maria Dibble

In all my more than fifteen years at STIC, I've never seen anything come out of government that spoke directly to STIC's beliefs and philosophy. There is a first time for everything though, and this is it. I want to applaud the possibilities generated by the Governor's proposal "NY State Cares," and the Self Determination initiative that could drive it. A cautionary note must be sounded, however, about the proposal. In essence, it would create about 4,800 new residential "opportunities" around the state over five years (980 in 1999-2000). At first, the intent was to have the majority of those take the form of group home slots. After much discussion with advocates, however, the true meaning of the word "individual" will be emphasized instead. People will be offered living alternatives specific to their desires and their needs, not those convenient to the system or the providers. We must be vigilant, however, to insure that individual choices are truly respected and acted upon. I don't accuse anyone of deliberately wanting to deprive you of your rights or the services you need, but bureaucracy moves slowly at best, and we must make sure that it continues to move, and in the right direction, the direction you choose!

So, what does this mean for you?

It offers you, the person with a developmental disability, and/or your family, a whole new array of options for independence, self- sufficiency, and improved quality of life. These aren't just empty words! The Self Determination initiative is the key!

For too long, you were told there's no money for you to get enough assistance to have your own apartment, or there's a waiting list, or your dreams aren't realistic, but now all those excuses are out the window. Why?

Well, now the same amount of money that pays for you to live in the institution you hate or to go to the day programs you find so boring, can, instead, pay for you to pursue your dreams. And it is enough money for most of you to have your dreams come true while still saving the state some dollars. Could there be a better scenario?

I don't think you can begin to realize the possibilities: movement from an institution (like an ICF or group home) to your own apartment with all the support you need; a job in the community earning decent money, instead of spending hours in a day treatment program or workshop. A future where your choices and your decisions determine the assistance and services you get and from whom and how you get them.

With this initiative, you and your family are in the driver's seat, leading the way to an integrated, independent life: living, working, going to school and enjoying yourself, among nondisabled friends and neighbors.

Only one catch though. "Ah," I can hear you thinking, "there's always a catch, isn't there?" Well, actually this catch is fully and completely in your control, and that catch is, you must ask to be a part of this exciting new initiative. Oh, agencies will probably tell you about it, but it is even better if you take the first step. They are busy, overloaded with work and it may take them some time to reach everyone with this exciting news. On the other hand, you will start the ball rolling immediately if you ask for Self Determination. We can help you too. We can give you more information, help you to plan for your future and ease the way through a sometimes complicated system.

We need your help to spread the word about this powerful initiative and the freedom and dignity it will spawn. Join us as we tell our colleagues, friends and interested others about our new hopes and dreams. Call STIC if you'd like to get involved. It's still a brand-new concept and you can help shape it to embrace every developmentally disabled citizen of our state.

So, what are you waiting for? Aren't you ready to dream and actually have those dreams come true?

Will it be easy? Probably not, but then, nothing that's really worth it is ever easy in this world. Can you do it? Absolutely! Are you capable of living life the way you want? Without a doubt! When can you start to plan your new life? Right now!

I found your recent article [Equal, Not Special: Working and Welfare Reform, Winter '97-'98] very disturbing. Having juggled part-time jobs for years to support myself and pay health costs despite a "hidden" disability from childhood (without seeking handouts from the government), doing volunteer work as able, finally earning an AS (4.0 average) on a part-time basis, and undergoing multiple hospitalizations and surgeries, I was unable to continue and had reached the extreme point of despair.

Through counseling at STIC, I began to realize that perhaps learning to function within realistic limits was not a failure, that accepting SSD was not the ultimate sin, and I did have a right to live and maybe even to "enjoy" some respite from my former employment.

I continue to perform daily tasks for myself (that skilled home health care professionals are paid to do for others) to maintain a stable physical condition and avoid the ER. This past year has been difficult with sudden weight loss, a bout of pneumonia, and emergency hospitalizations for blood values that had dropped to critical levels. Lab test results suggest a cancer diagnosis.

I still manage to "keep up appearances," bake a cake or two for local charities, and even supplement my income occasionally by "work" done at home. Not to be compared to my previous 8 hour+ shifts, but I like to think, an attempt at self-sufficiency.

Your article seems to confirm the general consensus of opinion of people who receive disability benefits in that, "Yes, you are an indolent dissembler out to cheat the system; yes, you should be earning your keep like everybody else," and "Yes, you have become a parasite of society." I wonder how others have been affected by reading it? I, for one, am left with a very bitter reminder of my own worthlessness.

--A Former STIC Client

The Editor replies:The writer is undergoing serious physical changes. While people with virtually any permanent disability can do something well enough to be paid for it, people with new disabilities often need time to adjust before resuming work. Nothing in my article precludes that, nor did I imply that such work should always be full-time.

The writer is able to do both volunteer and paid work at home, but disputes any obligation to do so and instead claims a right to "respite" from employment. This attitude, not my article, is what perpetuates negative stereotypes about people with disabilities on public benefits. I do believe that once people adjust to their disabilities they should, to the extent they are able, be earning their keep "like everybody else," if they expect to be treated "like everybody else."

It's Time for Fair Funding For Centers for Independent Living

In 1998, the NY State Legislature recognized the value of Centers for Independent Living (CILs) for people with disabilities and for taxpayers generally, and approved a $1.5 million increase in state CIL funding. Unfortunately, the Governor vetoed that increase. The total state CIL appropriation remained at $8,030,000, which is less than CILs received nearly a decade ago, in 1990. As a result, many New Yorkers who could live more independently were denied that option, and we all paid millions more in tax dollars for disability services than we needed to.

CILs are seeking a $3 million funding increase for 1999-2000. This reflects both cost-of-living increases and the growth in numbers of people served since 1990. If base funding for CILs had been increased by the actual NYS CPI percentage in each year after 1990, centers would get approximately $2.7 million more in 1999-2000 than they do today. However, inflation is not the only source of rising costs for CILs. Centers also serve significantly more people today than they did in 1990, and thus face higher costs for direct service personnel, overhead and administration.

$3 million, equally divided among the state's 35 CILS, would provide about $86,000 per Center. Centers could recover from the effects of a decade's worth of inflation, reinstate preventive maintenance of facilities and equipment and ongoing staff training, and retain experienced, effective personnel.

Each Center could also establish two new full-time staff positions. Based on a sampling of case studies, CILs expend an average of 11.3 staff hours per week to assist a person to leave excessively restrictive settings and/or remain in the most integrated setting. Two positions could provide this service to 7 people annually, totalling 245 people statewide. With each such person served saving the state, on average, $47,917 each year, $11.25 million could be saved in expenditures on restrictive programs. Deducting CIL costs produces $8.25 million in NET savings for disability services in New York State each year.

New York State can't afford not to adequately fund Centers for Independent Living. This is a clear example of how investing a small amount of money can reap major savings for taxpayers.

CENTERS FOR INDEPENDENT LIVING ARE COST- EFFECTIVE

Description of This Chart

A chart comparing costs for restrictive living supports to CIL integrated living supports Some typical case studies from around the state:

A man who incurred a stroke left an adult care home which cost $15,600 after his CIL got a wheelchair ramp built on his home for $3,525.
Annual Savings: at least $12,075
A woman whose multiple neurological disabilities caused seizures, limited judgment, behavioral issues and self-care limitations was about to move from a hospital to a skilled nursing facility at an estimated annual cost of $125,000. Her CIL provided a full-time peer counselor at a cost of $17,000 per year to help her relearn skills she needed to live on her own. She is back in her own home, her service costs continuing to decline as her skills return.
Annual Savings: $108,000 and growing!
A man with muscular dystrophy was in an ICF. Although the average cost of an ICF placement is $70,000 annually, his need for a ventilator and skilled nursing elevated the actual cost to an estimated $180,000/year. As he was becoming increasingly depressed, his CIL intervened by helping him move to a community setting where he receives annual OMRDD Medicaid Home and Community Based Services Waiver and Medicaid State Plan supports totalling $59,500.
Annual Savings: $120,500
A woman with a mental illness lost custody and visitation rights for her children and was being hospitalized 3 times a year, for 2-6 weeks each time, at an average annual cost of $14,500. Her CIL taught her coping skills and provided peer support at a cost of $2,468. She was reunited with her children and has not been hospitalized for over a year.
Annual Savings: $12,032
A woman with cerebral palsy was sent to an ICF at $70,000/year due to her difficulties with judgment in personal relationships. Her CIL spent $12,294 to teach her anger management, assertiveness, and other interpersonal and community living skills, and assisted her to get and furnish her own apartment. She gets SSDI payments of $10,500/year and ongoing CIL support.
Annual Savings: $47,206
A woman with a mental illness was facing life in a psychiatric center at an annual cost of $137,500, due to pressure from her family and a lack of assertiveness. Her CIL spent $212 to provide peer counseling, advocacy and other services to help her work with her family and find her own apartment, where she now lives with $2,796 in HUD rent subsidies.
Annual Savings: $134,492
An elderly man who uses a wheelchair was facing life in a nursing home. While the cost of nursing home care in New York State averages $46,000 annually, the actual cost for this placement would have been $50,896. Instead, his CIL helped him find an accessible apartment and provides ongoing transportation, peer counseling, and advocacy at a total annual cost of $268. He also gets an annual rent subsidy of $2,712.
Annual Savings: $47,916
A woman with a head injury was living in an OMRDD-funded supported apartment and attending a sheltered workshop, while receiving SSDI, at a cost of about $20,000/year. This situation is often heralded as "independent community living", yet the woman found her freedom overly restricted and her career options limited. Her CIL provided peer counseling, obtained OMRDD Individual Support Services living subsidies, and assisted her to get two real part-time jobs through supported employment, at a total cost of $16,815 the first year, and $13,509 in subsequent years.
Annual Savings: $6,491

INDEPENDENT LIVING IMPROVES LIVES WHILE CUTTING COSTS

Advances in rehabilitation services and technology, and removal of physical and attitudinal barriers following the Americans with Disabilities Act, have made possible a wealth of inexpensive ways for people with disabilities to live, learn, work, and socialize independently in their communities. New York State, however, still relies primarily on costly traditional institutional and medical model programs to provide living supports for its citizens with disabilities. The result is excessively restricted and unproductive lives for tens of thousands of New Yorkers, and unnecessary expenditures of tens of millions of taxpayer dollars.

CILs solve this problem by assisting people with disabilities to leave segregated programs or restrictive oversight and live safely, productively, and independently in the most integrated settings possible. In doing so they provide major savings to New York taxpayers. In FY 1997-98 the average annual savings that resulted when CILs helped people to move from excessively restrictive settings to the most integrated environments--taking into account all documentable public costs for supports provided in both segregated and integrated settings--was $45,917 per person. Unfortunately, CILs currently have the capacity to serve only about 4% of those who could benefit.

Description of This Chart

A bar chart comparing costs of various restrictive living settings to that of CIL-supported community living

WHAT ARE CENTERS FOR INDEPENDENT LIVING?

CILs are free-standing locally-controlled, non-residential non- profit agencies that are governed and operated by people with disabilities. They assist people with all disabilities of all ages to be as independent as possible. They also help families, businesses, agencies, and governments to better meet the needs of people with disabilities. Centers provide a broad range of services, such as advocacy, peer counseling, life skills training, information/referral, benefits advisement, and architectural barrier, assistive technology, and housing assistance. Some Centers also provide sign language interpreters, supported employment, service coordination, personal assistants and more, depending on the needs of their communities.

EXPANDING INTEGRATED EMPLOYMENT

Our society places enormous value on being employed and self- supporting. In fact, "work" was the central theme in the recent welfare reform debate. Yet we remain willing to accept the appalling statistic that 67% of people with disabilities are unemployed. We still consider segregated options such as sheltered workshops "good alternatives" for people with disabilities, even though they usually pay less than minimum wage, do not train people for advancement and continue an endless cycle of dependence on public support.

There is an alternative! Supported employment assists people with disabilities to learn and keep real jobs in the community. NY's 1997 Annual Status Report on Integrated Employment shows that supported work costs taxpayers about half as much as sheltered workshops and provides better employment outcomes while increasing tax revenue and cutting welfare costs:

NEW YORK'S DISABILITY EMPLOYMENT PROGRAMS: Cost-Benefit Analysis

Total sheltered employment expenditures: $140,184,000
Average annual per capita sheltered employment cost: $8,043
Total sheltered employment participants: 17,429
NY has no sheltered workshop wage data; based on the national average, the state's total would be under: $30,000,000
Sheltered workers pay little or no income tax, since most don't meet the minimum income threshold
Due to low wages and lack of employee benefits, sheltered workers remain dependent on government programs all their lives

Contrast With:

Total supported employment expenditures: $65,449,446
Average annual per capita supported employment cost: $4,290
Total supported employment service participants: 15,257
Total earnings of supported employment participants: $72,038,400
Income tax paid by supported employment participants: $1,584,845)

Unfortunately, supported employment does not reach all the people it could because the state's reimbursement rate, among the lowest in the nation, does not cover the higher cost of serving people with the most severe disabilities. This forces providers to keep this group in sheltered employment in order to be able to afford to serve them at all. If New York truly wishes to reduce dependence on public benefits and get people real jobs, this must change!

It's not necessary for New York State to take any money away from existing rehabilitation agencies or to cut services to any group. What is necessary is for NY State to tell those agencies that they can no longer use as much money for sheltered work, and pay them the same amount to provide supported work instead. This will support NY's workshop conversion efforts while still yielding a net savings to the state and producing better lives for people with disabilities. Here's how:

Over the next five years, reduce funding for long term sheltered employment by 50%. This would save $70,092,000 by 2004.

Immediately increase the average reimbursement rate for supported employment to $8,000 per person per year.

Provide enough additional supported work funding at the new rate to place 1750 people, over and above the current annual placement rate, for each of the next 5 years. This would cost $14 million in FY 99-2000, and a total of $70,000,000 by 2004.

By 2004, realize cumulative increased income tax revenue of $3,696,000 and decreased public benefit costs of $7,245,000 from 8750 supported work placements, for a net gain of $11,033,000.

IMPROVING VOCATIONAL REHABILITATION

In 1997, in a dramatic policy shift, the US Department of Education Rehabilitation Services Administration (RSA) released a directive mandating that vocational rehabilitation agencies cannot limit people with disabilities to "entry-level" employment goals that are inconsistent with their "strengths, resources, priorities, concerns, abilities, and capabilities." Rehabilitation agencies also must perform assessments and provide "career advancement" services to people whose current jobs do not match their capabilities. The new policy reverses prior directives that have shut out people with disabilities from professional occupations requiring advanced degrees. This "maximization of employment" language reaffirms the federal Vocational Rehabilitation Act's purpose of enabling economic self-sufficiency and inclusion for citizens with disabilities.

The new focus of social policy is on empowering people to be self-supporting, independent, fully contributing members of our communities. This is especially important to people with disabilities, of whom some 67% are unemployed. In 1997, the Legislature and Governor formally recognized the importance of the employment provisions of the federal Americans with Disabilities Act by incorporating them into NY State law. Now it's time to do the same with the Vocational Rehabilitation Act.

New York's Centers for Independent Living call for legislation to implement RSA's employment maximization directive in NY State

President Clinton has made two interesting disability reform proposals of his own. They include:

$1,000 tax credit for work-related expenses for people with disabilities. This will help pay for adapted transportation and assistive technology that aren't funded in other ways.

$1,000 long term care tax credit, to help cover the cost of attendant services. Some people understand this to mean that a family that must provide homecare to a person with a disability could receive the money as partial compensation for loss of paid employment due to the need to stay home with a disabled relative.

While these amounts won't cover the full costs of the items listed for most people, they are tax credits, not deductions. Credits are subtracted from the total income tax owed. If you don't pay tax or pay less than $1,000, the difference is paid to you in a "refund" check.

NY Governor George Pataki is running for President, and after last year's record election-year spending increase, he needs to reinforce his conservative Republican credentials. His 1999-2000 budget proposal is how he has chosen to do it. Therefore, it contains two big problems for people with disabilities:

First, for the tenth straight year, there is no increase in basic funding for independent living centers like STIC (see the CILs 1999 Disability Action Agenda for why this is a bad idea, as if you didn't know).

Second, there is a renewed attack on Medicaid recipients, including rate cuts for hospitals, nursing homes, and homecare, and proposed co-payments for prescription and over-the-counter drugs. These ideas aren't new, nor is the fact that they will actually increase Medicaid spending over time. Nursing home inmates, at best, are regimented and unproductive. At worst, they are neglected or abused when facilities provide substandard care. Homecare costs, on average, about 1/3 of what nursing homes cost per person, and provides better quality of life. Homecare workers make little more than minimum wage so it's hard to keep trained, experienced, dedicated attendants. Cutting nursing home rates will increase inmate abuse and neglect. Cutting homecare rates will make it harder for people to get attendants, so they will go into nursing homes, at three times the cost. Co-pays will cause poor people to avoid using medicines that could keep them healthier and cut their healthcare costs.

The Governor needs to look tough on spending right now, and he may think that in order to do so without riling up the nursing home lobby, he must take a "share the pain" approach. But should public health policy be beneficial and cost-effective, or should it please powerful lobbies? If New York really wants to cut Medicaid spending, it can and should: keep people from entering expensive institutions such as nursing homes, developmental centers, ICFs, and group homes; get people out of those places; and increase the availability of homecare as an alternative.

L.C. v Olmstead is a court case that enhances the Americans with Disabilities Act (ADA)'s power to free people from institutions. It's about two women with developmental and mental disabilities who won lower court decisions forcing the state of Georgia to release them from an institution and provide community-based services. It builds on the Helen L. v DiDario case, which clarified that the ADA requires governments to serve people with disabilities in the most integrated setting. L.C. extended that concept to people with intellectual disabilities who need oversight, and it stated even more clearly than Helen L. that moving people to integrated services is not an "undue burden" because integration is always cheaper, on average, than segregation.

The State of Georgia is taking the issue to the Supreme Court, which will hear arguments on the case on May 12, 1999. Initially, 26 other states signed an amicus curiae ("friend of the court") brief in support of Georgia. Disability activists jumped on that immediately. By March 1, they'd convinced 13 states to withdraw from the brief. NY's OMRDD Commissioner Tom Maul told a group of self-advocates in January that, while there had been discussion of the matter, New York State will not sign the brief.

But the news has not all been good. Another brief was filed in support of Georgia by several national groups, including the National Governors' Association, that represent state and municipal governments. Also, "Voice of the Retarded", which is heavily supported by unions for institutional workers, submitted a brief asking the Supreme Court to affirm that the ADA gives families the "choice" to force people into institutions if that is what they think is best for them.

Clearly, the ADA's principle of maximum integration is under heavy attack in every state. Those of us who care need to take steps to show support for the ADA:

ADAPT wants to have the largest turnout in history of disabled people at the Supreme Court on May 12. STIC plans to send a group of people. Call us at (607) 724-2111 if you want to come or make a donation to help defray costs. Or contact ADAPT at:

(512) 442-0252 or (303) 733-9324 adapt@adapt.org

The Public Policy and Education Fund of NY's publication, Your Right to Know about Managed Care, shows that 44% of HMOs in NY don't comply with the state's Managed Care Bill of Rights Law.

As predicted, when regulators forced HMOs to actually provide quality services to sick people, they began howling like banshees for more money. Here are premium hikes sought by major names: MVP--15%; Community Health Plan (CHP)--35%; CompreCare--44%; United Health Care--53%!

People with disabilities nationwide still have trouble getting adequate health care. A survey of 116 independent living centers (ILCs) found that about 9% of the issues ILCs deal with are health care complaints. 26.7% of complaints concern access to a health care facility; 23.7% either couldn't afford health care or couldn't get their insurance or HMO to pay for needed services; 11% of complaints cited quality of care.

The folks at ADAPT have come up with a new and improved version for the 106th. Congress to consider. It's called The Medicaid Community Attendant Services and Supports Act of 1999 (MiCASSA).

As before, the bill gives people who are eligible for Medicaid- funded nursing homes or ICFs the option to stay in their own homes with attendants instead, as long as it doesn't cost more than a nursing home or ICF. Customers would get as much control over attendants in hiring, training, scheduling and supervision as they want. Attendants could go with customers to work and religious or recreational activities, as well as do tasks at home. Some funds would help people move from institutions to their own homes by paying for security and utility deposits, bedding and household supplies. States can also get funds to promote the program and to change their long term care systems to ensure that more people remain in their own homes. Strong quality assurance measures in the bill emphasize individual consumer satisfaction and organized consumer input into planning and evaluation.

The new bill clarifies that attendants can be used not just for typical homecare tasks, but also for the supervision and ongoing training in life skills and activities that some people with mental or intellectual disabilities need. It also requires states to offer a range of program models, from single-provider to vouchers and fiscal intermediaries.

At this writing, the bill has no Congressional sponsors, however, in January ADAPT activists sat in at the Illinois home office of new House Speaker Dennis Hastert, after his staff refused to schedule a meeting to discuss possible sponsorship.

STIC has learned that New York State Medicaid officials "don't like" MiCASSA. NY has been surprisingly resistant to Medicaid reforms that would cut costs. Earlier, the state chose not to implement an option that would let people pay a sliding-scale premium to keep Medicaid coverage after going to work, though this would make it easier for people with disabilities to get off government benefits. MiCASSA, by giving people with disabilities the greater personal freedom that living at home provides, would also enable more people with severe disabilities to get real jobs, contribute to their own support, and become taxpayers.

SSI or SSD recipients who are seeking work are now presumed eligible for VR.

Self employment, telecommuting, and business ownership are clearly listed employment goals that VR agencies must support.

The Individual Written Rehabilitation Plan is now the Individualized Plan for Employment (IPE). VESID or CBVH must approve the IPE, but consumers can now write their own plans by themselves if they choose.

VESID and CBVH need not provide a service if someone else provides a similar benefit. But not all benefits are similar. For example, a student loan that must be repaid is not similar to a VESID grant for education, which you don't have to repay. If you're eligible for VESID tuition assistance, you can't be told to get a student loan instead. You don't have to use a similar benefit if it would delay your progress toward your goal or force you to refuse a job offer. For some services, VESID/CBVH is the first resort: diagnostic services, VR counseling, referral, job placement, assistive technology.

VR agencies now must play a bigger role in school-to-work transition, by helping schools prepare individual transition plans and making clear the roles and financial responsibilities of schools and VR agencies.

If a college refuses to provide assistive technology to a student, the VR agency may have to provide it instead and make the college pay for it later, if appropriate.

You now have a right to mediation in disputes with a VR agency. You can still get a fair hearing if mediation fails. VESID and CBVH administrations can no longer reverse a fair hearing decision unless it is appealed. You can take your case to court if you aren't satisfied with the outcome of the administrative review/appeals process.

In related news, a recent court case found that VESID may not have to pay for additional education for career advancement if you earlier agreed to a lower level of education in your individual plan. This means you should think far ahead. If you plan to be a lawyer, for instance, don't agree to a goal of getting a B.A. degree. Make "lawyer" your employment goal, so that the goal can't be achieved unless you get support for both undergraduate study and law school.

Two 1996 federal laws were to improve health insurance for disabled citizens. One required "parity" in physical and mental health coverage. The other was to ensure that people moving from one job to another wouldn't lose coverage. Neither law is working. The Mental Health Parity Act doesn't force employers to provide insurance for mental illness, but if an employer offers such coverage, it's supposed to be comparable to that for physical illnesses. A huge loophole only requires coverage dollar limits to be the same for physical and mental health services. Many plans get around that by limiting visits, treatment sessions, or days in the hospital instead, at levels far below those for physical conditions. The Parity Act's original Senate sponsors say they'll try to plug the loophole this year. Real parity bills are before the NY Senate and Assembly, but differences between them that precluded passage in 1998 may do so again this year. As for your right to keep group health coverage after leaving a job, if you can pay for it--many people can't, due to annual premiums of $10,000 to $15,000. We know of no plans to correct this.

Lots of lovely dollar signs and promises are swirling around people with developmental disabilities and their families this spring. New York State Cares! Self Determination! $45 million! Here's what you need to know to be an informed consumer and make the best of these great new opportunities:

It's Not a House, It's Your Home

Despite all the publicity about new group homes, nothing in the Governor's New York State Cares proposal requires a single group home to be built. Just because people are pushing new "IRAs" (Individual Residential Alternatives) doesn't mean you must live in one to get services under NYS Cares. The same money can assist you to live in your own home or apartment with all the medical, transportation, training, job, and recreational supports you need. Ask us about your options before seeking services. We aren't in the real estate business and we'll tell you everything.

You, Too, Can Be an IRA

In Syracuse, people with developmental disabilities can get all the benefits of an IRA (emergency coverage, meals, transportation and/or other living supports) while living alone or with a roommate they choose in an apartment they've chosen, furnished, and decorated themselves. IRA regulations permit this anywhere in the state; you are entitled to this option. If you've been told you can't do that around these parts, ask why, and insist that the problem be corrected.

Think for Yourself, Then Act on It

Self Determination is an option you can choose under NYS Cares. You can get a chunk of the $45 million and decide how to spend it to get the support you need to live in a real home, work in a real job, and spend time with real friends. No "menu" of services, no "approved providers", and nobody dictating to you. You pick where you live, who you live with (if anybody), the kinds of supports you need, and who provides them. If you don't like what they provide, you pull your money out and pick someone else who will do a better job. This truly is the real life you've been dreaming about. Don't settle for less, now that it's within your grasp. To enroll, call Larry O'Neill at Broome Developmental Services, 770-0599. For more information, call Ken at STIC, (607) 724-2111 (voice/TTY).

We would be remiss if we didn't raise some questions and cautions about all this NYS Cares and Self Determination hoopla:

Self Determination is being tested around the state. People are still learning how to do it. Some bureaucrats don't have the creativity or the guts to let people have real, wide-open choices. Some people with disabilities or families don't feel free to dream about real, unfettered lives. Sometimes, this means that people's lives don't look a whole lot different after Self Determination than they did before. It doesn't have to be that way, but Self Determination is not for the faint-hearted or unambitious. It's your dream, and you have to make it work.

Pataki's original plan called for $228 million for NYS Cares over 5 years. Yet his budget only allocates $45 million in state and federal funds. It's a 1-year budget; there is no commitment to continue this "5-year plan" after March 31, 2000. The Governor does not plan to be here in 2001; he wants to be President. How do we know this thing will go the full 5 years? Many multi-year proposals have disappeared or been cut after a year or two in NY. Remember Mario Cuomo's 3-year tax cut and the Community Mental Health Reinvestment Act? And, it's still only an idea! At this writing, it hasn't passed the Legislature.

If all the group homes being bandied about were to be built, there would be a serious site-selection problem. It's wrong for neighborhoods to get upset about housing for people with disabilities in their midst. But they do get upset--they stage demonstrations, they file zoning appeals, and they go to court. You may think a group home is a quick solution, but you may wait for years for the Not In My Backyard drama to play out. There are laws that let OMRDD bypass this process but OMRDD refuses to do that for fear of making people even madder. Self Determination could bypass all this and get people off the waiting list faster.

Is New York really planning ahead? On Long Island a large group of very vocal parents who don't want their kids with disabilities placed in segregated settings is having an impact. That is the wave of the future. Group homes cost about 3-6 times as much as similar properties in the same neighborhood. Demand for these facilities will decline over the next 20 years and the developers will have to sell them at a huge loss. Who will eat that loss? Take a guess.

Association of Independent Living Centers in NY
Position on New York State Cares:
We urge legislators to support the NYS Cares proposal, provided the legislation funding it contains the following provisions:

1. Each person served will be informed, in writing, of the availability of Self Determination as an option with training in how to prepare an individual budget through person-centered planning.
   
   
2. Every person served, regardless of service choices made, will be given an individual, itemized budget showing actual costs of services chosen, for purposes of comparison and informed choice.
   
   
3. Any new group homes created will have no more than four beds.
   
   
4. Each person who elects to live in a group home will get the opportunity to choose his/her roommate; groups of 4 or fewer people who wish to live together will have their preferences honored.
   
   
5. Any group home created will have a governing board, composed of its residents, which will make important decisions about: staff qualifications, skills and availability; activity schedules; support services provided; and rules for residents.
   
   
6. Spending goals, timetables and targets for reducing the waiting list will be sufficiently flexible that no DDSO will be penalized because it takes people who choose Self Determination longer to set up supports and services than it does through group home enrollment.

The Work Incentives Improvement Act of 1999 (the "Kennedy- Jeffords bill") returned to the Senate as S.331 in January. This bill seems essentially the same as the one that did not pass last year because of Congress's focus on impeachment. Among other things, S.331 will:

Give states the option to provide Medicaid-funded attendant services and prescription drugs to people who wouldn't ordinarily be eligible for Medicaid, but who need them to hold a job, such as people who have an employment history and therefore get Social Security Disability (SSD) benefits.

Let SSD recipients continue Medicare coverage beyond the 39-month cut-off if they are working.

Fund demonstration programs to gradually reduce disability benefits for individuals as their employment earnings increase.

Create the "Ticket to Work and Self-Sufficiency Program", which would give people with disabilities who get SSI or SSD a voucher that they could use to purchase voc rehab services directly from providers without going through VESID or CBVH.

The bill has a better chance this year because the President's balanced budget proposal for 1999-2000 fully funds everything in this bill. Funding was a major debating point last year.

The bill has 54 Senate sponsors, including both NY Senators. Two Republican Congressmen are planning to introduce a similar bill in the House.

Note that, if passed, the attendant services expansion component will be an optional program for states. We will have to push New York State to implement it, and NY doesn't have a good track record for adopting Medicaid work incentives.

In related news, the Social Security Administration plans to raise the Substantial Gainful Activity (SGA) limit from $500/month to $700/month. This is the level of earnings above which you lose eligibility for SSI.

by Mary-Ellen Kelleher

In our last issue we had the pleasure of meeting Patrick Essen and Athena McRorie, both involved in the STIC/JC High School transition program, Transitional Opportunities To Adult Living (TOTAL). Well, we're proud to say that both Athena and Patrick are too busy this spring to write an update--so we're doing it for them! Athena applied for and was hired as a receptionist in a physician's office. She is happy to be working in office technologies and feels that her volunteer work under the helpful tutelage of Rachel Bartlow, Secretary here at STIC, was very helpful. Athena is now looking at continued schooling to help her advance in her work. Way to go Athena! Patrick Essen, whose article on his Eagle Scout experiences you may remember, is now working at a local restaurant where he is right at home with some of his fellow alumni from JC High School. Patrick prepares the dining room for customers by wrapping silverware and laying tables. He is also looking forward to advancing in his work and perhaps taking some continuing education courses in the future. Way to go Patrick!

by Sue Ruff

Washed my sneakers Saturday; had a long weekend and didn't need them for a couple days. They should be dry by Monday.

Slipped them on--on Monday afternoon. The left one was dry inside, but kind of snug. It'll take a little while to break it in and stretch it back into a comfortable fit. Put on the right one--oops--still wet. Now I gotta change socks and put on other shoes. What a bother.

As I reviewed the weekly calendar of coming responsibilities, I noted the newsletter editor's deadline--TOMORROW!

What could I write about? I was trying hard not to think about work this weekend and just keep the stress to wet sneakers. Stress on weekends is par for the course when people's employment needs, job development, and work duties nag the conscience. How about a ridiculous comparison of jobs to wet sneakers? This is definitely "day-off" thinking.

Over the past few months, three people we have been working with in extended supported employment (that means they have had their jobs for quite a while and are stable in those jobs), have wanted or needed to change their jobs. Their old, comfortable shoes (career paths) needed a wash, so to speak. We have helped two of them find new jobs and they are now stretching out and breaking in those new jobs. The third person is still in a predicament. He wants a new job, but is approaching the process of looking, changing, and learning a new job, with fear of the unknown. He is proceeding with caution--the sneaker is still too wet to wear, let alone put on and break in. And we may need a couple pairs of dry socks before he and the shoes are ready.

My mom always used to say, "If the shoe fits, wear it." But what if I don't like its color or style? How long will it take to break it in?

Finding work is hard. Keeping a job is hard. Finding a new job after you have been working is easier than finding the first one. Like those dirty sneakers, maybe the career just needs washing and time to dry and break in again. Or maybe, it's just time to try a whole new color or style.

Have to go back to work tomorrow. Hope the sneakers are dry by then.

Copyright 1987 by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability--to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this... When you're going to have a baby, it's like planning a fabulous vacation trip--to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say, "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things... about Holland.

by Pat Charma

Hi everyone!!!!

I hope that everyone bad a wonderful holiday season! I have to be honest and say that I had the best time!!!! I went to Florida, with my mom and my housemate Renee and two of my three dogs. I suggest to anyone if you ever take a vacation, go to Florida during the winter time!! The weather was perfect!! Better than anything we get here in Binghamton during the winter!!

While I was lying in the sun with 80 degree temperature and swimming in the 79 degree pool, there were some deafies that braved the cold weather to have an exciting time at the 2nd. annual First Night on December 31 in downtown Binghamton. They told me that it was a great time and that they hope next year there will be more deaf going to this event and taking advantage of the interpreters that are provided. Thank you to those interpreters that took time out and worked that night. You did a great job!

The S.T.D.C. meeting was cancelled on January 9 due to a snow storm and rescheduled for January 16. At the meeting events were scheduled for this year. It was a good meeting.

Because of the efforts of John Greeno and other members of D.E.A.F. we were able to go to the Arena and see the BC Icemen play on February 5. Unfortunately, the Icemen lost, but many deaf people went to the game. Thanks to all for showing your support and I'm happy to hear that everyone had a fun time!!!!

I have some sad news now.

I'd like to say how much we will all miss Mrs. Eve O'Donnell. She gave so much to the Deaf community!! And she asked only that we support the Deaf community in return. So, please everyone, support the Deaf community and help carry on where Eve left off. For those that did not know, Eve passed away on December 10, 1998, at home. She will be missed!

I also would like to sent my condolences to the Martin family and Peed family. Eric and Rose's mom died Thanksgiving day. She lived in Ione, Washington.

On January 2 of this year Dudley Ashley passed away. Dudley lived in Whitney Point with his wife Mary. He will be greatly missed.

My sympathies to Ralph Barlett. His brother passed away on January 4. Robert lived in Florida, and he was 83 when be died.

Condolences also to the Donnelly family on the passing of Robert Donnelly.

My prayers go out to everyone that I mentioned.

Now for some news that is not sad. I am happy to announce that Barbara and Ken Starchok are now proud parents. Barbara delivered a beautiful and healthy baby girl on February 2, Groundhog Day. The little gem weighed 6 lbs. 15 1/2 oz., and she is a long baby at 20 1/4 inches. Her name is Bonnie Elizabeth Starchok. Mom and Dad welcome any visitors. But, they want all people to call first!!! Please respect their wishes. Remember that new moms and dads are very busy and very tired to have visitors all the time! So, please call first.

Well, That's all I have for now. I hope to see all of you at the next S.T.D.C. meeting!!

April 10
Easter Party
6 pm

May 2
Social 6 pm
Meeting 7 pm

June 12
Picnic at Jody's House
2 pm

July 10
Picnic at Otsiningo Park
1 pm

September 4
5th. Annual Picnic
Chenango Valley State Park
10 am

September 18
Social 6 pm
Meeting 7 pm

October 2
Inter-Bowling Associations
Ideal Lanes, Endicott
12 noon

October 9
Halloween Party
6 pm

November 13
Thanksgiving Party
6 pm

December 4
Christmas Party
6 pm

December 31
New Years Party
7 pm

from the BC Department of Public Transportation

The Americans with Disabilities Act requires that public transportation facilities and services be made accessible to all persons, regardless of any physical or mental disability. Broome County has done a great deal to make its bus services accessible, but realizes that the public needs to know more about how these services work. This article will tell you how to identify accessible BC Transit buses, and how to ride them. People without disabilities need to know about these services too. We hope this article will better acquaint you with Broome County's accessible bus services, helping you realize that transit can provide freedom of mobility, regardless of your personal abilities.

If you need more information, call the Broome County Department of Public Transportation at 763-4464.

BC TRANSIT

Currently, about half of BC Transit's buses are equipped with a person-lift at the front door. These buses have two wheelchair securement locations. As more buses are purchased, they too will be lift-equipped.

How do I know which bus has a lift?

Lift-equipped buses are marked in the bus schedule with the international symbol for accessibility. The buses have this symbol on the corner by the front door, too.

If you need to transfer to complete your trip, make sure you check that schedule too!

Who can use the lift?

The lift is available to anyone who cannot climb the stairs to get on or off the bus. It can accommodate all standard wheelchairs and scooters, and people who use walkers, canes, crutches, or other mobility aids.

How do I use the lift?

1. As the bus approaches, signal the driver to make sure he/she knows you want to get on.
   
   
2. When the bus stops, tell the driver you want to use the lift.
   
   
3. Stay about 5 feet back from the front door while the lift is deployed.
   
   
4. When the driver tells you the lift is ready, you can board. If in a chair or scooter, board backwards; this will let you maneuver more easily inside the bus.
   
   
5. If in a chair, lock your wheels. A safety barrier will be raised at the edge of the lift platform. If you are standing, hold onto the handrails. The lift will now be raised to the level of the bus floor.
   
   
6. The driver will tell you when it is safe to move into the bus. Pay your fare.
   
   
7. If you are in a chair or scooter, the driver will direct you to a securement position. If not, please take advantage of the priority seating at the front of the bus. If necessary, the driver will assist you with the securement straps.

Have a safe ride!

How about when I'm ready to get off the bus?

1. Remember to let the driver know when you want to get off.
   
   
2. If you are in a chair or scooter, the driver will assist you in releasing the securement straps.
   
   
3. The driver will activate the lift, and will tell you when it is safe to get on.
   
   
4. Use the lift as you did in boarding. Chairs should be facing outward.
   
   
5. When the lift is at ground level, the safety barrier will drop. The driver will make sure you are well clear of the lift before he stows it.

What if the lift doesn't operate when I need it to get on?

The driver will tell you when the next accessible bus is due. If it will be more than 30 minutes, a paratransit vehicle will be dispatched at your request.

What if I'm in a wheelchair, and both securement locations are occupied?

The driver will ask if any of the wheelchair passengers can transfer to a seat, and if their chair can be folded. If not, and if it will be more than 30 minutes before the next accessible bus is due, a paratransit vehicle will be dispatched at your request.

I don't need the lift, but I am visually impaired. How will I know my stop?

At your request the driver will announce major cross streets and specific stops.

Can I bring my guide dog on the bus?

Yes, all service animals are welcome on BC Transit.

MOBILITY TRAINING

If you are unsure about using lift-equipped buses, there is help available to you. You can attend a demonstration of a lift- equipped bus provided by the Department of Public Transportation. This will give you the opportunity to learn to use the lift and the securement devices in a quiet setting where you don't have to worry about delaying yourself and other riders.

For information about these sessions, call 763-4464.

by Mary-Ellen B. Kelleher

There aren't too many parents and caregivers who couldn't use some extra "pep" and if you happen to be the parent or caregiver of a child with a disability, we know just the place you can get that extra dose of pep--at the weekly Parents Empowering Parents (PEP) support group at STIC!

PEP is a group run for and by parents and caretakers of children with disabilities. STIC staff Jo Anne Novicky, RN, acts as the group's facilitator. Well-known in the local community, Jo Anne brings an extensive knowledge of community resources and years of in-depth work with children and families.

PEP meets every Wednesday morning from 9:30 to 11:00 am in the 4th. floor Helen Keller Meeting Room at STIC. At PEP you'll find hot coffee, a sweet treat, and an environment of support and warmth. PEP will encourage you to share your success, struggles and secrets for coping with the challenges of raising a disabled child in today's world. And you'll have the opportunity to take advantage of the years of knowledge that other parents, grandparents and caregivers bring to the meetings.

So consider yourself cordially invited to attend PEP meetings (which are free and open to all), as often as you can, or perhaps you'll only be able to make the special speakers meetings. Either way, we're sure we'll be able to learn from each other!

Children are welcome and childcare is available in our children's play area but we do ask that you call Jo Anne at 724-2111 (voice/TTY) to ensure we have enough staff to supervise the young ones! Thanks!

A List of Upcoming Meeting

Wednesday, March 1
9:30 am Speaker's Meeting
"Growing Up with a Disability"
Presenter: Susan Link,
Peer Counselor, STIC

Wednesday, March 24
9:30 am Regular Meeting

Wednesday, March 31
9:30 am Technology Open House

Introducing, the newest Self Advocacy group in New York State: "I Have a Dream"!

Members at the first meeting, in January, named the group "I Have a Dream" because we all have dreams; we just have to figure out how to get there. They talked about the fact that many people with developmental disabilities lead sheltered lives. They may not be sure that they "fit in" with nondisabled people. They may not know how to bring together a "circle of friends" that includes people who are not their family or people who are paid to be with them.

What do you think? If you have ideas and would like to join us, call Sue Link at 724-2111 (voice/TTY). We meet the 2nd. and 4th. Wednesday of each month, at STIC.

by Jo Anne Novicky, RN

A traumatic brain injury (TBI) may be one of life's most significant challenges. A TBI may occur at any time in a person's life development. TBIs are often the result of an automobile, bicycle or pedestrian accident, a construction accident, a brain attack (what used to be called a stroke), shaken baby syndrome, other childhood abuse, a brain aneurysm or a number of other events that cause trauma to the brain. While a TBI can change a person's personality, memory, mobility, and ability to communicate, each TBI is as unique as the person it affects and so it makes sense that each person with a TBI has a unique and unpredictable path to recovery. Of all the body organs, it is the brain that has the ability to rewire and heal itself in a way that allows people with TBIs to remain hopeful for years following their injuries that they will continue to experience progress and improvements in their overall condition and functioning.

STIC's TBI Support Group meets weekly, every Tuesday from 11:00 am to 12:30 pm (please note that this is a new time for this group). This group is open to all those who have experienced a TBI. Several of those who regularly attend are 15+ years post injury, while others are only a few months post injury. The group has seen an increase in the number of women attending and now includes about an equal number of men and women. Topics of discussion are those of interest to the group and are as varied as the group. Coffee is provided and group members often take turns bringing doughnuts or other treats to share. It's a time to offer and receive support and validation and to share successes, failures and skills for coping. The group is run for and by persons with head injuries and is facilitated by STIC staffer Mary-Ellen Kelleher. Individuals may also meet individually with Mary-Ellen if they prefer, or in addition to the weekly group. For more information, call Mary-Ellen at 724-2111 (voice/TTY).

TBI Meeting Dates & Possible Topics

March 23
I feel tired of living/full of life when....

March 30
I feel frustrated/peace of mind when...

April 6
I feel nervous/at ease when...

April 13
I feel ugly/beautiful when...

April 20
I feel special/useless when...

April 27
I feel hope/despair when...