NCIL is happy to announce that the Parent Advocacy Coalition for Educational Rights (PACER) Center in Minneapolis, MN received a five year grant from the Department of Education's Office of Special Education Programs (OSEP), to provide training and technical assistance to parents and advocates on the 1997 reauthorization of the Individuals with Disabilities Education Act (IDEA). The project, titled "FAPE" (Families and Advocates Partnership for Education), is one of four grants funded through OSEP to provide training on IDEA to families, advocates, educators, local administrators and policy-makers.
Currently more than six million children
with disabilities are served through IDEA. IDEA '97 strengthens academic
expectations and accountability for students with disabilities. It
stresses equality and the right to participate in the general curriculum.
Families and advocates must be involved with the implementation
of the new law to ensure that the changes
made by the IDEA amendments of 1997 are put into practice at the state
and local level.
NCIL is one of 12 Core Partners in the
FAPE project. In December, Maureen Hollowell, Chair of NCIL's IDEA
Subcommittee, and I participated in the first meeting of the FAPE Core
Partners. This two-day meeting introduced me to a group of people
who I had not worked with before and provided me with a fuller understanding
of the complexities of IDEA. The organizations in this partnership
are completely focused on the rights of children with disabilities, not
their individual organizational gains. I came away from the meeting
with a renewed, and enthusiastic, commitment to working toward full implementation
of IDEA. Without the opportunity to obtain a quality education, how
many young people with disabilities will
benefit from Title I of the ADA?
If you would like more information about
FAPE and its Core Partners, contact Maureen Hollowell at 757-461-8007 (V),
757-461-7527 (TTY) or me at NCIL at 703-525-3406 (V), 703-525-4153 (TTY).
You can also visit the FAPE web site at
www.fape.org
Not Just Responding To Change, But Leading
It.
Certainly there are laws that have begun to provide us with some civil rights, but are they enough?
We have had successes worth celebrating.
How have these laws both met and failed our expectations. More importantly, where do we go from here?
Join us at the 1999 NCIL National Independent Living Conference where we'll be exploring
Civil Rights:
Our Laws, Our Responsibilities
June 23 - 27, 1999
Renaissance Hotel Washington
Washington, DC
Conference Topic Tracks
Advocacy
Best Practices
Enforcement/Implementation
The Missing Links
For more information, contact our Conference
Coordinator:
Natalie Shear & Associates at 1-800-833-1354
(V/TTY).
RSA Meetings In Conjunction with the NCIL
1999 National IL Conference
Renaissance Hotel Washington
Washington, DC
CIL Directors
Meeting
June 22, 1999 &
June 23, 1999
1:00 pm - 5:00 pm
9:00 am - 12 noon
The Rehabilitation Services Administration
(RSA) will facilitate their national Centers for Independent Living Directors
Meeting. This meeting will be hosted by Merri Pearson, RSA Centers
for Independent Living Program Officer. The meeting will be an opportunity
for directors to interact with each other and with
RSA staff. There will be roundtable discussions
around issues identified by attending directors and an opportunity to share
your perspectives about independent living issues.
Registration forms for this meeting will
be mailed to RSA-funded CILs in early April 1999. They will also be available
on the RSA web site at: www.ed.gov/offices/OSERS/RSA/
SILC Meeting
June 27, 1999 &
June 28, 1999
1:00 pm - 5:00 pm
9:00 am - 12 noon
RSA will facilitate their national meeting of Statewide Independent Living Council representatives following the NCIL 1999 National IL Conference.
This meeting will be hosted by John Nelson,
RSA Independent Living Team Leader, and will include discussions about
topical issues in independent living.
Next year the National Council on Independent
Living (NCIL) will join forces with the National Council on Disability
(NCD), the Social Security Administration (SSA), the Department of Education
(DE), and the Department of Health and Human Services (HHS), to invite
young people with disabilities to Washington to attend the national Leadership
Conference for Youth with Disabilities (LCYD) and to meet with adult mentors
at the annual NCIL Conference. The LCYD will take place from June
22-26, 1999 at the Radisson
Park Plaza Hotel in Alexandria, Virginia,
overlapping with NCIL's conference from June 24-28, 1999.
This past year, both the 1998 NCD National
Youth Conference and NCIL's conference offered educational, mentoring,
and community-building opportunities to young people from around the country.
Young attendees at both conferences met with national disability leaders
to learn about disability history, culture, law, and policy. NCIL's
conference emphasized the important role of mentoring and supporting leadership
development. The National Youth Conference emphasized knowledge of
the law, national policies, and community-building as essential tools in
becoming effective leaders. NCD's web site (www.ncd.gov) has more
information on the 1998 National Youth
Conference program and events.
This year, NCIL and the federal co-sponsors
(NCD, SSA, DE, and HHS) plan to collaborate and leverage resources to offer
the best of both conferences to all national youth leadership conference
participants. NCD and the federal co-sponsors will provide financial
and program development support, while working with
NCIL to develop the conference mentoring
program. Both the federal co-sponsors and Centers for Independent
Living (CILs) in each state will have the opportunity to sponsor youth
to attend the 1999 conference. Two young people from each state and
U.S. territory will be invited to attend. One will be chosen by the
federal agencies' Selection Committee and one young person can be jointly
sponsored by the CILs in each state. A letter of invitation to apply
to the conference will be posted on the Internet and mailed out to disability
advocacy organizations around January 15, 1999.
We are seeking sponsorship by CILs of attendees to the 1999 National Leadership Conference for Youth with Disabilities. CILs who are willing to sponsor youth partners would be responsible for travel, lodging, meals, and the cost of conference materials for each youth partner, as well as travel and meals for his or her attendant, if needed. CIL associations or individual CILs have the opportunity to nominate and pay for a youth partner to attend the national youth conference and the NCIL conference.
The purpose is to increase youth leadership
development awareness and action at the state and local level. We
hope that through your sponsorship you can begin to form ongoing partnerships
with youth both at the conference and when you return home to your state.
We strongly encourage you to identify a candidate and
urge your local CIL to sponsor him or
her.
Encourage young people you know who are
age 18-24 years and post-high school to apply for the 1999 Leadership Conference
for Youth with Disabilities both through their local CILs and directly
to
NCD. Applications will be available
starting January 15, 1999 at the NCD web site, www.ncd.gov or can be requested
by calling 202-272-2004 (V) or 202-272- 2074 (TTY).
The future of the disability community
depends on strong leaders. We urge you to take advantage of this wonderful
opportunity to help ensure a future of independence by supporting the next
generation of disability leaders and advocates.
Sincerely,
Gina McDonald, President, NCIL and
Marca Bristo, Chairperson, NCD
By now you are probably sick of hearing about Year 2000 (Y2K) computer problems and the letters from insurance companies and governmental units asking you to promise that your organization is Y2K compliant. This article is not about your CIL. I expect that you have already completed CIL Y2K compliance activities.
I want to focus on a few potential Y2K problems for persons with disabilities and actions CILs could take to assist folks through any crisis. Let's first assume that the biggest and most bureaucratic organizations will have the most problems, such as governmental units, transportation industry, and utility companies.
Potential Problems
1. SSI and SSDI payments
will not arrive in January 2000. Persons with disabilities will not
be able to pay
rent,
buy food, and pay bills.
2. Electricity fails
for long or short time periods in January 2000.
Persons dependent on power for life
sustaining
medical equipment, heat, and charging
wheelchair batteries will be in danger.
3. Disruptions
in Medicaid cards or delivery of medical equipment and
supplies caused by transportation
difficulties create a situation where
individuals with disabilities cannot obtain needed
health care
supplies, medical supplies, or adaptive equipment.
Possible Solutions
1. CILs might
develop a Y2K Emergency Fund to assist individuals with
personal expenses (rent, food, etc.) until their regular income
arrives. Funds could be obtained via a special Y2K campaign,
foundation support or line of credit.
2. CILs
can contact local utilities to see how they have addressed
the needs of persons with disabilities in their Y2K compliance
planning. CILs may help utilities by advertising numbers
and contact persons if and when problems occur.
3. On the
issue of a possible breakdown in the provision of medical
equipment supplies and adaptive technology, I believe CILs
should inform persons with disabilities of this possibility
and encourage them to plan how to deal with such a resource
interruption. One method would be to stockpile medical
and health care supplies, which may be illegal by Medicaid
standards. CILs will want to help individuals plan ahead
and possibly advocate locally and nationally for entities like Medicaid
and insurance companies to relax their rules
in the last half of 1999 so that vulnerable individuals can
stockpile necessary supplies.
I am sure there are many issues that I
haven't mentioned, but I hope these
ideas help your planning and creative problem solving!
NCIL promotes a national advocacy agenda
that advances the full integration
and participation of persons with disabilities in society,
and the development, improvement, and expansion of
centers for independent living.
On November 22, 1998, CBS's "60 Minutes"
broadcast a video tape of Jack Kevorkian
euthanizing a man with Alterial Lateral Sclerosis
(ALS). Many were outraged at the sensationalism of showing
this "snuff film" during ratings sweeps, but few have challenged
the killing itself. Although Michigan legislators passed
a law banning assisted suicide, and Michigan voters overwhelmingly
defeated a pro-assisted suicide referendum,
Kevorkian says he will be acquitted by
a jury and resolve the issue once and for all. He claims that "no civilized
culture" would prohibit euthanasia.
Kevorkian carefully selected a "client"
who was terminally ill, unusual since
most of his 130 victims have been disabled and not terminally
ill. Thomas Youk's family said that they were "at the end
of [their] rope." Kevorkian made sure that millions of people saw
the crime and his confession. Reportedly for the first time
in Oakland County, a first degree murder
defendant was released on a personal
bond. If Kevorkian had systematically "assisted" any
other minority group to a "final exit" from their oppression, he
would be in jail awaiting trail. Equal protection of the law does
not apply to us.
If the jury acquits Kevorkian in a trial
scheduled to begin March 1, 1999, then
three things are likely to happen: (1) Kevorkian will
euthanize more people with disabilities (advancing his primary
stated agenda of live human experimentation and organ harvesting
for the greater good, and involuntary euthanasia of people
like seniors with Alzheimers and babies with spina bifida);
(2) the prosecutor will not "waste" more taxpayer
dollars trying to stop him, and (3) the
press will report that neither law
nor irrefutable evidence will turn back the widely popular
euthanasia movement. This would put us at the mercy of the
"mercy killers." Even those perceived as comparatively "respectable,"
such as the Hemlock Society, now openly advocate for legalized euthanasia
for people with any incurable conditions,
including involuntary euthanasia for some.
ONLY PEOPLE WITH DISABILITIES CAN STOP KEVORKIAN NOW. We must be at the trial in numbers that cannot be ignored the Wallace Spolars who fear being forced into a "rat infested" nursing home, the Sherry Millers who lost a husband and custody of her children, the Roosevelt Dawsons who never went home after their injuries. We must be there to tell the stories of his victims, our stories, and demand equal justice. In Kevorkian's previous trails, we were absent, and jurors refused to convict. This is our Mississippi Burning, our Rodney King case.
As if this were not enough to deal with,
on December 13, 1998, the U.S. Supreme
Court agreed to hear the State of Georgia's appeal
of a case in which two people with developmental disabilities
got the right to leave an institution and live in the
community. They won at the lower court level under the ADA Title
II requirement that governmental services (including long term
care services) be provided in the "most integrated setting"
appropriate to the needs of the individual.
Last time this issue came to the high court, it declined to hear the case.
But this time 22 states have joined
Georgia in the appeal. What will the judges
do? Announce that people with disabilities of all ages have
a civil right under the ADA to choose the "community first?"
Or sacrifice our lives to states' rights?
This is our Brown v. Board of Education,
our desegregation case.
The next millennium. Many in society want
to warehouse us. Others prefer us dead.
1999 must be the year we fight back with a vision and
power that cannot be ignored. It's time to re-prioritize. To join
this fight for our lives, contact: NOT DEAD YET at 708-209- 1500
(V), 708-209-1826 (TTY) or ADAPT at 303-733-9324 (V), 512- 442-0252
(V), 303-733-0047 (TTY).
IL NET has another exciting year filled
with training opportunities you won't
want to miss! Take a look at our
training seminars and start marking your
calendars now!
National Recruiting Seminar for IL NET
Trainers &
Consultants
February 22-24, 1999
Kansas City, MO
Advocacy I: Seize the Power
Motivating Others to Recognize & Use
Their Personal Power
March 17-19, 1999
Salt Lake City, UT
Keys to Financial Success For CILs &
SILCs
July 12-13, 1999
New Orleans, LA
Advocacy II: Unite in Power
Building Coalitions & Developing Strategies
to Influence
Change
July 26-28, 1999
Chicago, IL
Advocacy III: Demonstrate with Power
Direct Action Organizing: Developing &
Using Power For
Change
August 16-18, 1999
Orlando, FL
Making Marketing Magic For Your CIL
Date and location to be determined.
We'll be adding more activities including our teleconferences and our new online training opportunities. Watch for details in the near future! If you have any questions or concerns, please contact Raymond Lin at the NCIL office at 703-525-3406 (V), 703- 525-4153 (TTY), 703-525-3409 (Fax), or rlin@tsbbs08.tnet.com (E- Mail).
Expanding the Power of the Independent
Living Movement
In 1998, NCIL received $25,000 from the
Christopher Reeve Foundation to underwrite
some of the expenses associated with the annual
conference and other NCIL activities which further our mission.
The support shown by the Reeve Foundation is very important
to NCIL as we educate and advocate for the rights and freedoms
of people with disabilities. NCIL is excited about continuing
our relationship with the Christopher Reeve Foundation as
we fight for the civil rights of all people with disabilities.
NCIL is currently finalizing data from the salary survey of CIL Executive Directors and will be mailing it out to those CILs who requested a copy in the next few weeks.
The next issue of The NCIL Advocate will be out soon!!! This is an exclusive benefit for members of NCIL! If you don't currently receive The NCIL Advocate, you'll want to start getting these information-packed issues that keep you in the loop with all that's going on in Congress, the White House, and federal agencies. Join NCIL now to get your personal subscription for only $35.00! For more information, contact Membership Services at 703-525-3406 (V) or 703-525-4153 (TTY).
The NCIL 1999 National IL Conference Brochure
will be available soon!
Mark your calendars now for June 23-27, 1999 and plan on joining
us for an exciting conference. For more information, contact
our Conference Coordinator, Natalie Shear and Associates at
1-800-833-1354 (V/TTY).
The NCIL ADA-ILC National Training Project
will be resuming its activities later
this year. Watch for upcoming information on training
related to the Americans with Disabilities Act.
NCIL inadvertently left out two very important
pieces of
information in its last newsletter.
! The Houston Center for Independent Living (HCIL) is a recipient of one of the 1998 Region VI Advocacy Awards for their sponsorship of "Meet Houston's Mayoral Candidates - A Forum for Houston's Disability Community." Congratulations, Sandra Bookman, Executive Director, and everyone at HCIL!
! All the fabulous pictures that were in the Fall 1998 issue of the NCIL newsletter were taken by Photographer Extraordinaire, Tom Olin.
Our apologies, Sandra and everyone at HCIL
and Tom!
<Photo of Ed Roberts Poster>
This poster of Ed Roberts premiered at
the 1998 NCIL Conference.
Pictured with him is his son and the words,
"Passing the Torch.
Independence Is You."
Now you can have a copy of your own! NCIL
offers this remembrance of the
"Father of Independent Living" for $10.00 each, plus shipping
and handling. Thanks to an anonymous donor, your entire contribution
will support NCIL's critical advocacy efforts! Order yours
by contacting the NCIL office.
NCIL STAFF
Anne-Marie Hughey
Executive Director
Julie Clark
Director of Advocacy and Public Policy
Romunda Ings
Secretary/Receptionist
Raymond Lin
Project Logistics Coordinator
Michelle Newman
Director, NCIL ADA-ILC National
Training Project
Jorge Pineda
Accountant
Larry Zdanovec
Volunteer
How to Reach Us!
NCIL
1916 Wilson Boulevard
Suite 209
Arlington, VA 22201
703-525-3406 (V)
703-525-4153 (TTY)
703-525-3409 (FAX)
ncil@tsbbs08.tnet.com
(E-MAIL)
Not Just Responding To Change, But Leading It.