March 1999
EDITOR-IN-CHIEF: MARIA DIBBLE
EDITOR: KEN DIBBLE
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Authorship
All articles appearing in this newsletter are written by Ken Dibble unless otherwise noted. Generally, I get tired of seeing my name on every page, and I'd rather use the space for something more interesting. I do put my name on controversial stuff, though, so you'll know who to blame.
15 Down and a Millennium to Go!
Left--Assemblyman Jay Dinga's remarks are interpreted by Jody Weidemann. Right--Executive Director Maria Dibble looks on as Senator Thomas Libous reads a proclamation from the State Legislature.
by Theresa Northup
Hello. I am the Mentor Project Coordinator here at STIC serving individuals who are blind or visually impaired. I am very excited about the project and what it has to offer to meet the needs of individuals with visual disabilities as well as their families. The primary focus is to assist individuals and families to gain knowledge and experience about various services, resources, technology, and adaptive equipment available to them. One of the ways we hope to accomplish this is through the use of mentors in the community who have firsthand knowledge and experience about issues related to vision loss and blindness. Mentors will provide information on how to access various resources, services, and equipment for individuals with visual disabilities, as well as ongoing support and encouragement. Also, mentors will provide guidance and assistance to high school students and adults seeking employment to learn specific strategies and resources to achieve their career goals and aspirations. If you are a high school student or adult with a visual disability looking for assistance in getting a job, or you are a parent or family member and would like to speak with other family members of people with visual disabilities, call me at 724-2111 x321 (voice/TTY).
The Consumer Directed Personal Assistance (CDPA) program in Tioga now has two active participants. We would really like to see it growing faster. We are fortunate to have several people interested in being assistants. They are actively telling people about the program.
The flexibility of scheduling is appealing to both consumers and the assistants they hire. Participants are not so pressured into scheduling appointments or visits from friends and family to accommodate rigidly set visits from agency aides or nurses. They can call and ask, can we change the time? Often that works best for both the consumer and the assistant.
I have received several calls from consumers interested in this program, only to have to say "sorry, you do not qualify" because it is for Medicaid recipients only.
I hope that soon someone with authority and common sense will take a look at the system and realize many of the Medicare regulations are costly and inefficient. Now many people can get home care--if they have indwelling catheters or certain other medical needs. The cost of visiting nurses and other highly skilled people could be cut drastically, if their visits were limited to recertification checks. If the consumer could teach his or her own assistant to do the procedures, Medicare could save a fortune.
If enough people needing the help and enough people providing the help keep pushing for change it will happen. CDPA was years in trial before it was finally decided it was working. Let's just hope it is not so long until all consumers, regardless of health care provider, can decide who and when and how they will receive the help they need.
Consumers and friends of STIC: Would you like to help support our continuing work at STIC? We need your help! We will be collecting returnable cans and bottles for their deposit value. You may drop off your donations Monday - Friday between 9 am and 4 pm. Please make sure bottles and cans have been washed and are clean. If you have questions or suggestions, call Qassem at 724-2111 (voice/TTY). We appreciate your continued support for this project.
Our Annual Meeting and Board Elections were held on December 10. Newly-elected Board members include Marybeth Gamba and Michael May. Members reelected were Glenn Davis, Linda Greeno and Milrene Smith. Congratulations to those elected! Thanks also to former members Connie Head and Cecile Lawrence for their service. Following Connie's resignation, Joe Walsh was appointed to the Board.
*Linda Greeno - President
*Milrene Smith - Vice President
*Edie Lind - Treasurer
*Phil Coffin
*Glenn Davis
Marybeth Gamba
*Jewel Huse
*Michael May
Beverly Rainforth
Kathy Sas
*Joe Walsh
*Indicates person with a disability
MARCH 16, 1999
Self Determination Task Force Meeting
1:00 pm
APRIL 21, 1999
Conference:
ADA and the FMLA (Family & Medical Leave Act)
9:00 am - 3:00 pm
MAY 21, 1999
Conference:
ADA and Court Decisions
Details to follow
present our
1999 Disability Action Agenda
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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:
Total sheltered employment expenditures: $140,184,000
Contrast With:
Total supported employment expenditures: $65,449,446
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.
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
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:
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.
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.
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.
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.
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.
Last year the Supreme Court affirmed that the ADA requires
prisons and their programs to be accessible to disabled
prisoners. Senator Strom Thurmond has proposed a bill to reverse
that ruling. Thurmond said, "The Supreme Court did not say
whether applying the ADA to state prisons exceeded the Congress'
powers under the Commerce Clause or the 14th. Amendment, but we
should not wait on the outcome of this argument to act...Although
the entire ADA raises federalism concerns, the problem is
especially acute in the prison context." Thurmond is attacking
the ADA at its weakest point, where it protects people whom
society cares about least. If he succeeds, his next move may be
to introduce legislation attacking the basic concept that the ADA
can regulate state government services for people with
disabilities at all. President Clinton has opposed weakening
amendments to the ADA, and is unlikely to sign such a bill should
it pass. Still, the situation bears watching.
Welcome to
Holland
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.
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.
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!
Pat's Corner
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
May 2
June 12
July 10
September 4
September 18
October 2
October 9
November 13
December 4
December 31
Accessible Public
Transportation in Broome County
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.
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.
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.
TBI Support Is No
Accident
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).
March 23
March 30
April 6
April 13
April 20
April 27
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!
Wednesday, March 17
Wednesday, March 24
Wednesday, March 31
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.
Some typical case studies from around the state:
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
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)
adapt@adapt.org
Position on New York State Cares:
Copyright 1987 by Emily Perl Kingsley
by Susan Ruff
by Mary-Ellen Kelleher
by Pat Charma
CALENDAR
Easter Party
6 pm
Social 6 pm
Meeting 7 pm
Picnic at Jody's House
2 pm
Picnic at Otsiningo Park
1 pm
5th. Annual Picnic
Chenango Valley State Park
10 am
Social 6 pm
Meeting 7 pm
Inter-Bowling Associations
Ideal Lanes, Endicott
12 noon
Halloween Party
6 pm
Thanksgiving Party
6 pm
Christmas Party
6 pm
New Years Party
7 pm
from the BC Department of Public Transportation
by Jo Anne Novicky, RN
I feel tired of living/full of life when....
I feel frustrated/peace of mind when...
I feel nervous/at ease when...
I feel ugly/beautiful when...
I feel special/useless when...
I feel hope/despair when...
by Mary-Ellen B. Kelleher
9:30 am Speaker's Meeting
"Growing Up with a Disability"
Presenter: Susan Link,
Peer Counselor, STIC
9:30 am Regular Meeting
9:30 am Technology Open House
