ENJOY!
 
 
 
 

NCIL NEWS

A Publication of the National Council on Independent Living
January/February 1999
 

 

NCIL Partners With PACER

Educating Families and Advocates on IDEA '97
By Anne-Marie Hughey, Executive Director

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
 
 
 

In this issue...                     Page

1999 IL Conference .........                   2
CIL Directors Meeting ...                       2
SILC Meeting ......................                2
NCD Partnership ................                  3
Y2K ...................................                4
The Next Millennium ..........                 5
IL NET Calendar ..............                    6
Christopher Reeve Foundation ........       7
On the Horizon .................                   7
Congratulations ...............                     8

Not Just Responding To Change, But Leading It.
 
 
 

NCIL 1999 National IL Conference

 

"Civil rights."

What do those two words mean to the future of the disability rights movement?

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.
 
 
 

NCIL and NCD Partner on Youth Initiative

Dear Disability Advocates:

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
 
 
 

Y2K

By Lee Schulz

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.
 
 
 

The Next Millennium: Institutionalizing and Euthanizing People With Disabilities?

By Diane Coleman

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 Training Opportunities

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
 
 
 

Funding from the Christopher Reeve Foundation

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.
 
 
 

On The Horizon

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.
 
 

Omissions in the Fall NCIL NEWS

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.
 
 
 

Congratulations!!!

Please welcome our youngest NCIL member! Michelle Newman, Director of NCIL's ADA-ILC National Training Project, delivered a 5-pound, 13.5 ounce bundle-of-joy, Virginia Catherine Newman, on
November 25, 1998. Please join us in celebrating the birth of Michelle Newman's (and hubby Jeff's) daughter.
 
 

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. 1