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DECEMBER 19, 1997 ..................................................................NUMBER 73


HOLIDAY CHEER

We extend to everyone and their family PEACE, LOVE, JOY and HAPPINESS. There will "not" be a FRIDAY FAX on December 26th or January 2nd. The FRIDAY FAX will resume on January 9th, 1998. Wishing you and yours a healthy and prosperous NEW YEAR…NPND


IDEA/NPRM Teleconference

The Friday, December 17th, teleconference to review Section 615 of the Individuals with Disabilities Education Act (IDEA) and the corresponding regulation from the Notice of Proposed Rulemaking (NPRM) was postponed due to circumstances beyond our control. Section 615 will be reviewed on January 5th, Monday, at 2 PM EST. Everyone is invited, even if you have not participated in the previous calls! Want to join in? The phone number for the conference call is (904) 779-4714 (new number). This "904" call-in is a 50% split cost to you the caller and NPND. A chart of the side-by-side comparison of IDEA/NPRM can be found on the NPND Webpage or you can contact Heather Hebdon at (253) 565-2266, (253)566-8052(fax) or by E-mail at wapave9@idt.net for a copy.


TOWN MEETING

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/.


SSA WILL REVIEW DENIED CHILD SSI

This Thursday, Social Security Administration (SSA) Commissioner, Kenneth Apfel, following a comprehensive review of SSA's implementation of legislative welfare reform changes in the Supplemental Security Income (SSI) childhood disability program, directed necessary corrective action be taken by reviewing 45,000 cases of children who had SSI disability benefits ceased, offering a second chance for appeal to all. Apfel stated "we are taking these actions because I do not want any child to be disadvantaged as a result of some deficiencies in how the decisions were made…the decisions I am announcing today are not about numbers, our concern is about children." More importantly, his decision provides families an opportunity to redress this situation.

NPND and other advocates urge families who receive notification of the reopening of the appeals process TO TAKE THAT OPPORTUNITY TO APPEAL RESTORATION OF BENEFITS. In addition, families may request that their child's cash benefits continue during the appeal, which can take some time. This request should BE MADE WITHIN 10 DAYS of receiving the notice. NPND urges families to get assistance in filing appeals and commends Commissioner Apfel for including a toll-free number for legal services in the notice which families will receive.

While all advocates appreciate the announced actions, there is still a lot of work to be done. The review process undertaken by SSA has revealed systemic flaws in the system. We continue to believe the new standard goes far beyond what was required by the 1996 welfare reform law; resulting in more than 142,000 low-income children with disabilities losing essential benefits. Still more have been denied eligibility upon initial application. The present standard should be revised so that it better reflects our knowledge of childhood disability so fewer children and families are harmed. We will keep you informed!!!


TASH REPORT

TASH, an International Association for the disabled, their family and the professional, dedicated the entire annual meeting, held in Boston, to honor Dr. Gunnar Dybwad and the late Dr. Rosemary Dybwad for their lifetime service for people with disabilities and their families. During the meeting a plaque was presented that stated the following: "Honoring the Lifetime Achievements of Gunnar Dybwad and Rosemary Dybwad - Be It Remembered For All Time That TASH On December 9, 1997 Instituted The Dybwad International Scholarship To Be Awarded Annually - To Advance And Promote Worldwide The UNESCO Education For All Programme." NPND applauds TASH's decision to honor the Dybwad's and to establish the international scholarship award.

The TASH meeting had some remarkable events the Friday Fax will report on in future issues. Today, we will include coverage on the session: "Taking Charge Of My Life."

In the session, Robert Cutler, a self advocate from Boston, was surrounded by his Circle of Friends who discussed their support and involvement with Rob. A representative from the State of Massachusetts and the director of the community system that provides services for Rob added their part of Rob's story.

Rob Cutler is a man who was institutionalized for a number of years. Unable to secure his release, his mother and other friends launched a campaign to "Free Rob Cutler" and to provide community services for him. One of the means used to get attention for Rob's cause was to march in the St. Patrick's Day Parade in Boston. Rob won his release and moved to the community where he has made phenomenal progress. During the session, he typed remarks after each speaker and responded to questions from the audience by typing his reply.

Here are his comments: "I Robert Cutler am 40 years old. I am autistic. My life has been hell because nobody truly understands autism. I live a life hunting to survive. I enjoy the opportunity to choose who helps me. This was not always the case."

"I want to tell you, behaviorism almost destroyed my mind and soul. I was asked to act like a seal. Being fed food to do nonsense jobs because I was different. Autism is a culture, like Irish or Italian. We will solve the behaviorist mistakes very soon." "Group homes should never be. We need our homes, not names of streets as homes. This is a very important issue. I want to type about the benefits of my apartment versus a group home."

On January 15, 1993 I started on a difficult challenge. Could I make the change and silence the critics? Most thought I would fail. But I didn't."

"Why did I make it? Well first would be my mom. Someday she will explain all the politics that she did for this to happen. Next was Mark. He must have been crazy to attempt to pull this off. Since, really his support in the beginning was Mom, George and Sherri. I knew it would succeed. Mark was getting tired from all the politics and crashed. People couldn't believe he knew so much about autism without college, but he did and does. Yes"

"I love my job and am respected by my customers. They talk to me and not through me. Before, when I was in a shelterless workshop, I hated work. Now it is fun, meeting people and being the boss. Yes"

"Knowing how to type took 2 years of trial and error. I feel useless when my body is tuck. It's like the body is frozen, but life keeps moving."

"Yes, it is hard but a little typing is better than none at all. I believe this is why other think FC (Facilitated Communication) fails, because some can only do a little while others can write books. FC is real. Yes"

"I want to type about Robert using typing to talk. It is very hard for me to talk. I feel pain in my head when I am asked to talk a lot. I do better typing out my voice for people to hear my voice. I believe typing will be a key for me to open up and share my knowledge. Yes"

"It needs to be told for parents to know how it feels. I would say be patient, never stop trying. It will happen, yes, it takes patience."

"I look to a time when all people with autism type. I use the facilitated method, but others may just type. Many children in school should be afforded the opportunity to learn to type. It is hard but remember how hard it was for us to walk as a baby. You parents are so proud of us then. Give us now, the opportunity to type. We will not let you down."

"Typing gives me the opportunity to communicate my thoughts and ideas. Yes!"

"I am slowly helping to write a book abut myself. I give my all to writing this book. I can only type as much as my body allows me to do."

"I want this book to be on others perception of me. It is important to give history of my life as well as personal accounts about me. I would like my brother George to write about what it is like for him to have a brother like me. George deserves to be acknowledged for his part in my life. Sherri should write about how she feels about me. I want Mom, Mark and Ross to write too."

"I want to thank you for listening and learning. I have started to open my eyes so you can learn about life in my world. We do things slower, not because we are slower, but it's so we never make a mistake, yes."

"Most high on my list Gunnar Dybwad. If I changed his mind about who I am, then there is hope for humanity. Yes, I am done."

"(The message to remember) If I a difficult person can succeed, then your child can too. It's not a crime to be different. Lastly, never use behaviorism, it almost destroyed my mind and soul. Yes" - Robert Cutler


CIVIL RIGHTS NEW HEAD

The President on Monday announced the appointment of Bill Lann Lee as Acting Assistant Attorney General for Civil Rights and Counselor to the Attorney General for Civil Rights Enforcement. Mr. Lee in accepting the position stated, "The solemn duty of the Civil Rights Division is to enforce the letter and spirit of the civil rights laws. Without proper enforcement, these laws are merely empty promises. Every time the division prosecutes a civil rights enforcement case, America strives to make real the promise of equal opportunity for all." Mr. Lee's appointment came on the 206th anniversary of the Bill of Rights.


FAMILY PARTNERS

Family Partners, a newly funded project by the Jack E. and Zella B. Butler Foundation of New York City and the David and Lucile Packard Foundation in California, is a joint project of Family Voices and the Heller School at Brandeis University. It has an overall goal of promoting quality health care for children with special health care needs. One aspect of this three year project will be how new forms of managed health care plans can best meet the needs of children with special health needs. Also they will work with selected managed care plans to develop and influence managed care services for this population.


COMBINED FEDERAL CAMPAIGN (CFC )

We want to thank all of you who have given to the National Parent Network on Disabilities this year. Friday Fax is one of the programs of NPND supported in part by CFC funding.

MANY THANKS!!!