Legislative Update

Washington, DC - President Clinton unveiled a new FDA regulation that will require manufacturers to study the safety and appropriate dosage levels of drugs, and to require proper labeling of drugs for use with children. It is well documented that many drugs affect children differently than adults, but most drugs have not been tested on pediatric populations prior to receiving FDA approval.

Under this rule manufacturers of prescription drugs likely to be used with children will be required to complete studies and place information on drug labels to help pediatricians and other health care providers make scientifically-based treatment decisions when prescribing drugs to children.

During the announcement briefing at the White House, twenty-one month old Samuel Hanoura pranced around the stage while his mother spoke. Sam crawled up on the chair between President and Mrs. Clinton and plunked himself down. Sam couldn't figure out why hundreds of cameras were flashing. Sam slid off the chair and proceeded to run back and forth between Vice President Gore and Secretary Donna Shalala. For a few moments, Sam got more attention than all of the notables at the briefing.

Sam is a child who has needed medicine for control of asthma since he was four months old. The drugs available from Sam's pediatrician to use have not been tested on infants and young children. Fortunately, the potent drugs were effective and did not have a negative effect on Sam. In spite of being upstaged, the President begin his briefing with the comment "I'm not used to following the star of the show."

The propose regulation requires manufacturers of new products to provide the results of studies on the effect on children when the product represents a meaningful therapeutic benefit over existing treatments or when the product is expected to be widely used on children. Manufacturers of drugs already on the market, would be required to provide the results of additional testing only if there is a "compelling need for more information".

President Clinton said "Today we take one more significant step toward assuring quality health care for our children, building on our historic commitment in the balanced budget to extend health care coverage to five million of them who don't have it today."

Washington, DC - The U.S. Department of Education is asking states to set up panels of educators, administrators and parents to guide schools in the implementation of the recently passed Individuals with Disabilities Education Act (IDEA). In a letter to state administrators dated July 28th, Thomas Hehir, the Director of the Office of Special Education Programs (OSEP), shared OSEP's plan for each state educational agency to appoint a team to develop action plans for complying with the law.

Each state team would identify the special education requirements the state fails to comply with; steps needed to ensure compliance, timelines, required resources, responsible staff and verification methods. The teams would write the agreement, seek public comment, get formal approval from OSEP and verify that the plan is carried out.

In a subsequent letter dated August 12th, Ruth E. Snyder, Director of the Division of State Monitoring and State Improvement Planning, described the on site monitoring that will take place as part of the monitoring activities. According to Ms. Snyder, two OSEP staff members will be on site in "most cases" for one week to participate in a series of meetings/discussions to develop activities to ensure effective implementation of the 1997 IDEA requirements.

Patty McGill Smith, the Executive Director of the National Parent Network on Disabilities said "In all the meetings held by the IDEA Working Group prior to passage of IDEA '97, there was one overriding theme - IMPROVE MONITORING and make the state accountable. This plan to set up Implementation Agreements is excellent. If is heartening to see that parents from a variety of organizations, including a representative from parent training centers are being included on the team."

It's August, Congress is in recess, and we are all trying to take a deep breath before activities start in September. And as you know, your own members of the Senate and House are also attempting to take a deep breathe, and catch up on many off their chores in their home state. What a great time to remind them of a couple of very important issues that are coming up in a few short weeks related to the Individuals With Disabilities Education Act of 1997.

The Riggs IDEA Limitations Amendment, which, if enacted, would threaten the recent hard fought victory for IDEA's passage. The amendment would limit the penalties to states that fail to provide special education services to individuals who are 18 years old or older, and reside in adult State prisons. This amendment flies in the fact of the spirit of IDEA, and the civil rights of all people with disabilities and it is important that any attempt to dilute the provisions to IDEA be resisted.

Secretary of Education Richard W. Riley expressed his concern that this amendment would "undermine the very important bipartisan and bicameral agreement on IDEA that President Clinton signed into law less than two months ago". Secretary Riley expressed his opposition to efforts to undermine IDEA, including the new provisions allowing resolution to issues regarding educational services in adult prisons.

The Labor/HHS and Education Appropriations Bill, to which this amendment may be offered, will be considered when Congress reconvenes after Labor Day.

The House needs to be encouraged to expand the appropriations and of increasing importance, is to contact Senators on supporting the $843 million increase in Part B and the $3 million increase for PTI's in the Education appropriations. Let them know that the integrity of IDEA should be preserved.

Do you think it would be a good idea to recruit twenty parents of people with developmental disabilities -- ten procommunity, ten pro-developmental centers-- and put them in a room together for a weekend to see if they could find some common ground?

In early 1997, the Administration on Developmental Disabilities did exactly that, not once but three times. The meetings were held in Florida, Tennessee and Washington. Each meeting was facilitated to ensure that we would all behave in ways that would make our grandmothers proud. Each meeting was made up of parents and family members recruited by state-based parent leaders. Each meeting was as difficult as you might imagine and we lost some participants along the way. It wasn't always fun. However at each meeting we found some common ground.

We agreed that people with developmental disabilities and their families:

• have individual needs.
• should be treat with respect.

We agreed that parents of children with developmental disabilities:

• should be included in decision making--even for adult children.
• should not focus our energies on fighting each other
• hope their children died before they did.

I'm still astonished that I was the only one who disagreed. This is a poignant comment on the state of our national policy. It demands that we work and plan to create services that are, and would be, reliable, predictable, and sustainable in the long run. I came away from these meetings with more empathy for procentered parents. I understand what they feel, though I don't feel it.

At the same time, I am much more committed to community inclusion, not just for people with developmental disabilities, but for all of us. More than ever, I believe that the people with developmental disabilities have the power to create the real communities we all need. I like what my son brought into my life and into our family and our community. I like what he is helping me become.

This article was contributed by Sue Swenson, a former Kennedy Fellow and disability advocate. Sue lives in Minnesota with her 3 sons, one who has a disability. For mor information on the family forums, contact her at 612-624-9559 or e-mail at Swens049@tc.umn.edu

Evan J. Kemp, Jr., 60, a longtime disability rights advocate died August 12th in Washington, DC. He was diagnosed at age 12 with Kugelburg Weylander Syndrome, a progressive neuromuscular disease, and would not live beyond 14. The disease proved to be progressive but it never dampened his ambition or spirit.

In his speeches and newspaper editorials, Mr. Kemp expressed his beliefs that society should and what he call paternalistic approach in developing programs to aid people with disabilities. he advocated initiatives that emphasized the opportunity to work, self-reliance and responsibility.

Mr. Kemp served as the chairman of the Equal Employment Opportunity Commission under the Bush administration which gave disabled job applicants the same employment protections granted women and minorities under the 1964 Civil Rights Act and required employers to provide people with disabilities access to the workplace. In announcing these new proposed regulations, Mr. Kemp said, "Now, fir the first time in history, millions of Americans previously excluded from employment will be able to pursue the dream of self-sufficiency and achieve the satisfaction of producing valuable goods and services for their fellow citizens.

He will be missed.

Justice for All, an independent organization dedicated to advocacy for people with disabilities, now has a Website on the Internet. You can access information from their organization, without cost athttp://www.mailbot.com/justice. Justice for All asks that you register when you sign in. Congratulations to the Justice for All team --Justin Dart, Becky Ogle, Fred Faye and Mark Smith.

A new Website designed and managed by students called "disAbility Doesn't Mean We Byte!" can be found on the Internet athttp://library.advanced.org/11799