The Friday Fax

a weekly news bulletin from the National Parent Network on Disabilities
MARCH 21, 1997 - - - - - - - - - - - - - - - - - - - - - - - - Number 35

Disability Community Unites

Last Friday, March 14th, the advocates spoke with one voice regarding the Reauthorization of IDEA. Mr. Hoppe, once again, led the IDEA Working Group in reviewing numerous sections of the law with special consideration of the concerns regarding any amendments to the discipline section of IDEA. The number of participants wanting to speak on this issue was so large, the meeting was extended for an additional 2 hours. This time was spent pressing the need for no changes regarding discipline, with an emphasis on "no cessation" of educational services.

Today, the first hour of the meeting will give students a chance to give testimony regarding IDEA. This is the last week in this series of meetings. Documents forwarded for today's meeting include information regarding the IEP and definitions.

Another meeting is scheduled for April 4, 1994 from 1-5 p.m in the Senate Russell Office Building (location tentative).

WHAT CAN ADVOCATES DO TO HELP? Next week the Congress will go home for Easter break. The Members need to hear from you!!!! They need to, one more time, hear why IDEA is so important for our children. Points you may want to review:
· Don't punish kids for having a disability.
· Don't punish families.
· Support schools to implement the law.
· Encourage and reward effectiveness.

Below is a list of the members of the Senate and House committees who are in charge of IDEA. They may be contacted by calling 1-800-962-9524, or 202-224-3121.

Senate Labor & Human Resources Cmte
James Jeffords, Chair; Ted Kennedy, Ranking; Tim Hutchinson; Chris Dodd; Dan Coates; Mitch McConnell; Barbara Mikulski; Susan Collins; Paul Wellstone; Judd Gregg; Jeff Bingaman; Mike DeWine; Jack Reed; Bill Frist; John Warner; Patti Murray; Mike Enzi.

House Cmte on Education & the Workforce
Williams Goodling, Chair; Thomas E. Petri, Vice Chairman; William Clay; Marge Roukema; George Miller; Harris W. Fawell; Dale E. Kildee; Cass Ballenger; Matthew G. Martinez; Bill Barrett; Major R. Owens; Peter Hoekstra; Donald M. Payne; Howard P. "Buck" McKeon; Patsy T. Mink; Michael N. Castle; Robert E. Andrews; Sam Johnson; Timothy J. Roemer; James M. Talent; Robert C. (Bobby) Scott; James C. Greenwood; Lynn C. Woolsey; Joe Knollenberg; Carlos A. Romero-Barceló; Frank Riggs; Chaka Fattah; Lindsey O. Graham; Ruben Hinojosa; Mark E. Souder; Carolyn McCarthy; David M. McIntosh; John Tierney; Charlie Norwood; Ron Kind; Ron Paul; Loretta Sanchez; Bob Schaffer; Harold E. Ford, Jr.; John E. Peterson; Dennis J. Kucinich; Fred Upton; Nathan Deal; Van Hilleary; and Joe Scarborough.

NPND State Fair

Join us from 6-8 pm on April 3rd at our best shindig of the year. It will be held concurrently with the TAPP opening reception at the Doubletree Hotel in Arlington, VA
Contested Words, Contested Science: Unraveling the Facilitated Communication Controversy: Parents - check out this great new book edited by Douglas Biklen and Donald Cardinal.

NC PTI Holds Principals’ Institute

On Thursday, March 13th, the Exceptional Children’s Assistance Center, NC PTI, conducted an institute for principals on inclusion funded by the NC Council on DD and the NC Department of Public Instruction. The one day conference, “The ABCs and Inclusion: What Principals Need to Know,” also addressed how inclusion fits with the state’s education reform efforts (ABCs).

270 principals, assistant principals, and teachers heard their peers from elementary, middle, and high schools discuss “Planning, Scheduling and Resource Allocation for Inclusion” as well as testing, behavior, parent/ professional partnerships, and curriculum and instructional practices that support inclusion.

The purpose of the institute was to give building staff the skills necessary to include students with disabilities in all parts of the school community. Connie Hawkins, ECAC Executive Director, hopes that regular educators walked away with both information, and a “we can do this attitude.”

Inclusion Mailing List

As part of the JPD Developmental Website, a new electronic mailing list on the topic of Inclusive Education has been established. The goal of this list is to provide educators, researchers, parents and individuals interested in Inclusive Education information about teaching strategies, teaching materials, books, conferences, support groups, and other materials related to inclusive education. More information about this list is posted on their website at: inlist.html; or you can join now by sending an e-mail message to: and in the body of the message type subscribe inclusion.

Respite for Families in the New Community-Based Family Resource and Support Grant Program (CBFRS)

by Jill Kagan, Chair
National Respite Coalition

The mission of the National Respite Coalition (NRC), a division of the National Respite Network, is to protect and promote respite for families in national, state, and local policy and programming through local networks of respite providers.

Last year, NRC, along with the National Parent Network on Disabilities, the Epilepsy Foundation of America, and the National Easter Seal Society, actively supported the enactment of a new law—"The Community-Based Family Resource and Support Grant Program" (CBFRS). The purpose of the act is to "support State efforts to develop, operate, expand and enhance a network of community-based, prevention focused, family resource and support programs." There are several reasons why this new law is critical to families of children with disabilities:

Families of children with disabilities, at some point, seek respite services, in times of crisis or just to take a break or do the grocery shopping. Respite can be critical to a families' well-being.

 CBFRS repeals the only significant source of federal funds for start-up of new respite services—"The Temporary Child Care for Children with Disabilities and Crisis Nurseries Act (TCCA)," but the new law gives States the authority to use funds to start-up new respite and other family resource services.

 CBFRS has a set-aside to continue funding for current TCCA grantees and the ARCH National Resource Center on Respite and Crisis Services.

 Community-based family resource programs funded by the state under the new law are required to provide or arrange for respite as a core service.

Despite the success of respite services in keeping families together and allowing them to care for their children at home, respite is in critically short supply.

 Our respite network members report waiting lists of 400 to 500 families. On average, respite programs are forced to place one out of four families requesting services on waiting lists.

In many states, families of children with disabilities have been overlooked in the mainstreamed provision of family resource and support services.

 CBFRS requires that families of children with disabilities, as well as individuals and organizations experienced in working with families of children with disabilities, must be involved in the development and implementation of a state's network of family resource centers.

 The additional needs of families of children with disabilities must be addressed by local family resource centers.

How Parents Can Help

The National Respite Coalition needs your help now.

 Make sure you are involved in planning and implementation of CBFRS in your state.

Given the flexibility of the law, and the limited dollars (CBFRS received $32.8 million in FY 1997), new respite services are unlikely to be funded by the State unless many voices speak loudly at the state level about the overwhelming need. If you would like more information about who to contact in your state regarding CBFRS, and how to become more involved in the planning and implementation of the new law, please call (703) 256-9578.

 Ask Congress to give more support to CBFRS in FY 1998.

Write or call your Representative in Congress now to request full funding ($66 million) for CBFRS in FY 1998. The House Subcommittee on Labor, HHS, and Education Appropriations will soon begin consideration of the FY 1998 funding bill, and the Senate will take up the bill in late spring.

For a list of House or Senate Appropriations committee members, feel free to call me at the above number. Address your letters to: The Honorable ___________, U.S. House of Representatives, Washington, D.C., 20515, or The Honorable ____________, U.S. Senate, Washington, D.C., 20510 or call the Capitol Switchboard at (202) 225-3121 or (202) 224-3121.

If you would like more information about respite policy, please write to the National Respite Coalition , 4016 Oxford St., Annandale, VA, 22003. For more information about respite generally, call the ARCH National Resource Center at 1-800-473-1727 and for the National Respite Locator Service, call 1-800-773-5433.

NPND * 1727 King Street, Suite 305 * Alexandria, VA 22314
(703)684-6763 (V/TDD) * (703)836-1232 (fax) * *