DECEMBER 5, 1997 ...............................................................................NUMBER 71


Twenty-eight people participated in the NPND Legislative Sub-committee's first telephone conference call on IDEA/NPRM which was held on the 3rd of December. Section 601 through Section 613 of the Individuals with Disabilities Education Act (IDEA) and the corresponding regulation from the Notice of Proposed Rulemaking (NPRM) were reviewed.

Everyone is invited, even if you did not participate in the last call!

Want to join in?

Make a reservation now to assure enough lines for everyone. Please send " I WANT TO PARTICIPATE IN THE DECEMBER (DATES) IDEA/NPRM TELEPHONE CONFERENCE CALL" with your NAME, ORGANIZATION, PHONE, FAX OR E-MAIL to Patty Smith, Executive Director, NPND 1200 G Street MW. Siote 800. Wasjomgtpm. DC 20005; phone (202)434-8686; fax (202) 638-0509; e-mail

The phone number for the conference call is (904) 779-4713. This "904" call-in is a 50% split cost to the caller and NPND.

A chart of the side-by-side comparison of IDEA/NPRM can be found on the NPND Web page or you can contact Heather Hebdon at (253) 565-2266, fax (253) 566- 8052, or by E-mail to for a copy.


The Center for the Study and Advancement of Disability Policy in the Institute for Health Policy, Outcomes and Human Values, The George Washington University Medical Center, released on November 25th the "User's Guide For Analyzing The proposed IDEA Regulations." The publication was authored by the director, Robert Silverstein, JD, who is known nationally for his work in disability policy and has served as staff director and chief counsel for the Subcommittee on Disability Policy on Labor and Human Resources, US Senate. The purpose of the guide is to provide a user friendly instrument to review the US Department of Education's Notice of Proposed Rulemaking (NPRM) published on the 22nd of October. The Department has requested that comments be received on or before January 20th regarding the proposed regulations. The guide uses the framework set out in the NPRM to facilitate the reader's review. It highlights changes and includes references to the new statute. The guide differentiates whether the regulations restates or reflects the new statute or if the proposed regulation includes an interpretation of the new statutory provision. Legislative history references are generally set out in notes following a regulation, usually using the House Report. The guide also reflects changes to incorporate existing policy interpretations that are currently set out in correspondence or policy memos. The guide does not reference proposed regulations that simply restate current regulations or only include technical or minor changes. Recommendations are not made as these are to be made by others. The guide is available on the Part I ;Part II


The new commissioner of the Social Security Administration (SSA), Kenneth P. Apfel, promised a top-to-bottom review of the implementation of the new childhood disability regulations. SSA officials have found evidence that the government improperly terminated disability benefits for many poor children, misinformed parents of their legal rights, and actively discouraged some parents from appealing the decisions. They are working on remedies but first they are discussing notifying parents about finding legal representation and giving them a new opportunity to challenge the loss of benefits. The American Bar Association (ABA) has recruited and trained lawyers around the country to help poor children fight the termination of disability benefits, via local bar associations, to work Social Security officials. ABA is setting up toll-free numbers in every state so that parents can seek free legal assistance when any new notices are sent out. After receiving notice that they no longer qualify, families have 60 days to appeal. They must file an appeal within the first 10 days to continue receiving benefits checks while they wait for hearings on their appeal. The rules for determining children's disability were changed in the 1996 Welfare Reform Act. A relatively strict interpretation of the new standard was issued by SSA in February 1997. Since then, SSA has re-examined 236,586 children's cases and cut off disability benefits for 60 percent (142,395) of them. In addition 68 percent (225,578) of new claims have been denied benefits. With SSI termination many children with disabilities lose Medicaid health insurance or experience delays in becoming otherwise eligible in their state's Medicaid system. Children who appeal have a good chance of success. Some of these are children with multiple impairments including severe mental retardation, diabetes, AIDS, etc. Of the appeals, 57 percent have won restoration of benefits to date, with especially high rates of success in Illinois, Michigan, Louisiana, New York and New Jersey.

Disability rights advocates say the high reversal rate shows a pervasive problems in how decisions are made. SSA staff predict a larger proportion of their decisions will be upheld in the future. The commissioner's report on the review is expected in the next couple of weeks. Apfel stated, "I don't see evidence to suggest that a majority of the reviews have been done unfairly or inaccurately, but there have clearly been some problems.

We want to correct them." We have put several items of assistance on the NPND Web site: "What Will Happen If Social Security Reviews Your Child's Eligibility For SSI?" from the Judge David L. Bazelon Center for Mental Health Law and The Arc and from the SSI Coalition For A Responsible Safety Net, "Social Security Administration Issues New Children's SSI Disability Standard," "Doing A Face-To-Face Hearing At The Reconsideration Level," and "What Educators Need To Know About The Changes In The SSI Children's Disability Program." The SSI Coalition assists low income elderly as well as people with disabilities. They can be reached at 205 West Monroe Street, Chicago, IL 60606-5013, (312) 223-9600 or (312) 263-3846fax.


Families USA has announced their January advocates' conference, "Consumer Health Action '98," which will be held in Washington, DC on January 22-24, 1998 at the Renaissance Mayflower Hotel. It will link community leaders and advocates from diverse constituencies; children, seniors, labor, immigrants, people with disabilities, communities of color, the faith communities; to find ways we can work together. The conference has a large and wide range of co-sponsoring national and grassroots organizations. A list of workshops and program agenda can be found on the Families USA Web page at An early bird registration of $195 is available until December 15th after which it will be $225. Hotel rooms are available at a conference rate of $119 until January 7th and after that only on a space-available basis. To secure the special rate, please advise them you are attending the Families USA Conference. The Mayflower's reservation number is (202) 347-3000. Need more specific information, want a registration form or have questions about special accommodations, contact Patrice Franklin at Families USA (202) 626-0628.


The President's Advisory Commission on Consumer Protection and Quality in the Health Care Industry released the "Bill of Rights and Responsibilities" which was supported by all but one member. The President on November 20th endorsed these at a White House event. He stated in accepting the recommendations of the Commission that it provides a framework for long overdue national standards of consumer protection. These are to be either voluntarily adopted by health insurers and managed care plans, or written into law by states or the federal government over the next year. The President challenged all private health plans to adopt the "Bill of Rights;" called on Congress to pass appropriate federal protections into law; and directed federal agencies to adopt the protections of the "Bill of Rights" or advise him of where they need new legislation to do so. The Commission's Bill of Rights consists of the following rights and responsibilities:

A number of disability and consumer advocacy groups believe these are a step in the right direction but do not go far enough towards dealing with the ongoing discrimination or other problems faced by consumers currently in managed care settings. Future negotiations will hopefully allow an opportunity to address these issues.


The National Organization on Disability(NOD), an 18 year old cross disability organization, works to increase participation of people with disabilities in all aspects of life. NOD is known for its Harris Polls on attitudes regarding disabilities and recently lead a successful fight to add a statue of FDR in his wheelchair at the FDR Memorial here in Washington. Jim Dickson at NOD, leader in the FDR Memorial wheelchair campaign, is promoting linkages for better working relationships between adults with disabilities and children with disabilities and their families. NOD is recruiting parents and people with disabilities for its Community Partnership Program. Jim has told NPND that this community based program is an excellent program for our families to participate in and it will provide a forum for working together with adults with disabilities on common issues.

The Community Partnership Program is a grassroots network of 4,500 towns, cities counties. The partnership identifies and addresses local disability issues through the leadership of a Representative who is appointed by the chief elected official of the community. Representatives receive valuable information and are eligible for cash prizes and national publicity for local disability work. By participating, you will be an integral part of our country's fast growing cross disability network. To participate contact Bliss Kaye, NOD, 910 16th Street, NW, Washington, DC 20006, (202) 293-5960, (202) 293-5968 TDD or e-mail at


The United Nations General Assembly proclaimed December 3rd be observed as the International Day of Disabled Persons. The US Department of State was the site for the observance where the United States Council for International Rehabilitation and the People-to-People Committee on Disability hosted the ceremony "Global Partnership Focusing on Ability." The United Nations has started the second "50 years" with the emphasis on furthering of rights and the potential of disabled persons as a main focus of the international community including "full participation" of disabled persons in social life and development, and in "equality." The Honorable Madeleine Albright, Secretary of State, was the keynote speaker and was presented an award for her commitment and work furthering disability rights around the world. Three others were recipients of awards: John Hockenberry, first Bernard Pozner Memorial Journalism Award; Rev. Harold Wilke, Peace through Faith Award; and Senator Robert Dole, Chair Award. Ambassador John McDonald, Justin Dart, Susan Parker, and others were speakers.


The Combined Federal Campaign is half way through for this year. Friday Fax is one of the programs of NPND supported in part by CFC funding. If you would like to consider the National Parent Network on Disabilities, our number is 1532.