JANUARY 9, 1998 ......................................................................... NUMBER 74

HAPPY NEW YEAR!!!!!

Welcome back from the holidays. We hope that it was a joyous time for all of you! With the holidays behind us and a New Year upon us, let us resolve to continue to strive to make this an inclusive society for "ALL".

TOPICS IN THIS ISSUE INCLUDE:

TOWN MEETING

NPND LEADERS COMPLETE REG REVIEW TELECONFERENCES

Jeffords-Kennedy Conference Call Postponed

SSI Update

HCFA-Sponsored Regional Conferences On SCHIP Implementation Scheduled

Justin, KEEP GETTING BETTER

TOWN MEETING

In the December 19, 1997 issue of the Friday Fax we shared with you the following information (reprinted below) about the Video Satellite Town Meeting which is being held on January 20, 1998 by Secretary of Education, Richard Riley. It is the first time the Secretary of Education has held a Town Meeting entirely dedicated to kids with disabilities. Over 300 sites have already been set up. We urge everyone who is able to participate.

Secretary of Education, Richard W. Riley, will host a panel of parents, educators and researchers at The Department of Education's January Video Satellite Town Meeting entitled, "Serving Students With Disabilities: What Families, Schools And Communities Need To Know." It is scheduled for Tuesday, January 20th, 1998, 8PM-9PM EST. This will be an interactive forum looking at ways families, educators and communities can work together to improve the quality of education for students with disabilities and provide schools with the tools to assess what all children are learning. The discussion will include the recent amendments to the Individuals with Disabilities Education Act (IDEA '97). It is a great opportunity to talk to Secretary Riley and hear from others about IDEA'97.

How do you take part? All it takes is for one person to invite the key people in your community, school or neighborhood who care about education, and then to find a site that has a satellite dish. In most communities, that site will often be a school building. If your local school or school district is not equipped with satellite capability, there are national organizations that encourage their local affiliates to serve as downlink facilities for the Satellite Town Meeting. These include Public Broadcasting System member stations and local chambers of commerce. Other possible downlink sites are public libraries, community colleges, television stations, government offices, businesses, hospitals, hotels, and even private homes with backyard satellite dishes. Major national cable outlets, including The Discovery Network and Channel One, rebroadcast the Satellite Town Meeting each month, and a number of state educational television systems, Public Broadcasting System member stations, and scores of public access television channels broadcast the program live in cities and towns around the United States.

Join the discussion! The Satellite Town Meeting is available at "no cost." It is asked that you register your participation. How do you register or do you have questions about finding or participating in an already registered site? Call (800) USA-Learn or E-mail to Satellite_Town_Meeting@ed.gov. Want more information about the monthly town meetings? Contact the US Department of Education's Web site at http://www.ed.gov/inits/stm/. Any local or visiting parents are invited to attend the Town Meeting at the Newseum where the program will be broadcast live. The Newseum is a new state-of-the-art interactive museum of news located at 1101 Wilson Boulevard, Arlington, Virginia (Metro: Rosslyn). There is a reception which will begin at 6:30 PM. Please RSVP by January 12 to Ashley Shaw at (202) 401-0936 if you plan to attend.

NPND LEADERS COMPLETE REG REVIEW TELECONFERENCES

NPND leaders completed their last telephone conference this week, 5 January, to gather input on the IDEA proposed regs. In a series of 5 calls, Heather Hebdon skillfully led the group to review each change in the new law, and to prepare input for the Office of Special Education. By next week, the Board of Education reviews and approves the document. The matrix of all of the changes, along with the NPND comments and transmittal letter will be on the NPND website.

LEADERS across the country, PLEASE prepare your own letter of comment on the IDEA regs. It is important for all of us to send comments since the Department counts on the number of responses. Somethimes we tend to only focus on the regs which we feel need "fixing". Although, it is also equally important to comment in support of proposed regs which you like. Comments are due on January 20th. Please send comments to Mr. Thomas Irvin, OSEP, 330 C Street, SW, Washington, DC 20202.

Jeffords-Kennedy Conference Call POSTPONED

Please be aware that the Jeffords-Kennedy telephone conference calll which was scheduled to be held on Wednesday, January 14th, for parents and advocates to provide input on WIIA, Work Incentive Improvement Act of 1998, has been postponed. A new date has not been scheduled yet. We will keep you informed.

SSI UPDATE

Advocates from around the country continue to work on SSI problems. Last week two letters were forwarded to the new Commissioner for the Social Security Administration, Kenneth Apfel, regarding documented reports of problems in two areas of concern. The first letter detailed problems caused by the way that the "interim rules", published in December 1996, are being interpreted as to how parents can use SSI monies to help their child. the second letter describes the extraordinarily high rate of cessation of children turning age 18. Friday Fax has copies of case summaries outlining the "forbidden expenditures" for parents and a list, by state, of the cessation rate and the total number of 18 year olds affected. These documents will be available on the NPND website under SSI.

It is important for parents and advocates to forward any reports of potential abuse towards children and families regarding these issues and/or other (mis)interpretations of the laws. We need to know what is happening at the grassroots level. the new Commissioner of SSA is listening to information about how the system is, or is not, working. We need documented information to forward to him. Send reports to Patty Smith, c/o NPND offices or E-Mail. Reports will be followed up and forwarded.

HCFA-Sponsored Regional Conferences On SCHIP Implementation Scheduled

SUMMARY: HCFA is sponsoring a series of nine regional conferences in January and February on implementation of the new children's health insurance program. The conferences will address technical information and assistance needed to implement SCHIP (State Children's Health Insurance Program), such as outreach, administrative simplification and streamlined eligibility, tools to promote and measure quality, coordination with other children's health programs, and "crowd out" of private insurance.

Conference attendance is by invitation of the Regional HCFA office. For the first conference, Region V asked the Governors' office to submit a list of invitees.

ACTION: Contact the Regional HCFA office to request an invitation. (If you are in region V, contact your Governor's office and the HCFA Regional office.) Be persistent about getting invited.

Below are the dates of the Regional conferences, the contact person at HCFA for each region's State Children's Health Insurance Program meetings and their telephone numbers:

Parents and advocates, it is extremely important that the regional and state level government leaders hear your input.

Justin, KEEP GETTING BETTER

In late December, we learned that Justin Dart had a very serious episode of heart failure. After some wonderful healthcare he is back "into his chair and into his politics".

All at NPND, wish him a great recovery so that he may "lead on"!

We would like to share with all of you the last quote in his Christmas letter.

"This period in the shadow of death has reinforced my profound belief in each one of you, and in our just cause. It is a cause worth living for and worth dying for."

That each one of us could approach our work with the commitment and conviction of our wonderful leader, Justin. Thank God for Justin and Yoshiko and their family.

If you would like to send Justin a note, his address is: 907 6th Street, SW, Apt. 516-C, Washington, DC 20024.