2004 Legislation

TAKE ACTION NOW!

December 21, 2004

If anyone wants to do something about the situation we face in Illinois, please contact us and click here to email.

A year ago, the Autism Society of Illinois created a legislative committee to help advocate in Springfield. The Committee is now made up of people from all over the state. Most of us are parents, but we also have providers and other advocates. We have representatives of many groups outside of ASI, including CAN, local ASA chapters, local support groups, and other people who just decided to get involved and help Illinois improve its status as one of the worst states in handling autism. We are working to coordinate the autism community here to unify and improve our legislative efforts. We are now drafting legislative proposals we can bring to our legislators and/or present to the DHS’ Autism Task Force for its sponsorship in the upcoming spring session. These may include bills on:

• a Medicaid waiver program for autism; extension of health insurance parity requirements;
• an insurance coverage mandate;
• “best practices” or similar educational/therapy standards;
• an autism registry/reporting requirement;
• thimerosal ban;
• license plates;
• and others.

We will also need to oppose certain bills that could make our lives even more difficult if they are passed into law. Send me an e-mail; please join us and contribute whatever help you can. If you can’t do that (or even if you can), here are a few things you should do RIGHT NOW:

• Get your child included in the state’s new services waiting list database (see below re: PUNS database).
• Get to know your legislators. Look them up here: http://www.elections.state.il.us/dls/pages/SelectOfficialSearch.asp and write them a short letter telling them about autism and asking them to support our cause. This will help with any bills that are introduced this spring because they will remember their constituents. We will help you with this, and with speaking to your legislators in person.
• Join ASI! It’s cheap and the more members we have, the more powerful our voice: www.autismillinois.org.
• Join the Political Action Committee for Illinois children with autism: www.i-ask.org Donate as much as you can (see the website for details) and ask others to do the same, so we can actually lobby in the same arena as the powerful groups that will inevitably oppose progress for our families.
• Monitor this website (www.autismillinois.org/legislation.asp) and Illinois discussion groups (such as AutismNews@yahoogroups.com) for action alerts and write/call when it’s needed most.

No one can do this for you. Get involved, it makes a difference for all of us.

PUNS Database Created to Identify Service Needs in Illinois

Autism is undercounted and overlooked in Illinois. Now, the State is finally trying to figure out how many people with developmental disabilities are not being served by their supports systems. Please help us put autism on their priority list. The Division of Developmental Disabilities is doing a series of educational forums about the community needs for services/supports and the Prioritization of Urgency of Need for Service ( PUNS ). You do not need to go to these info sessions, but you NEED to get on this waiting list for services. Call your local PAS agency and get your child (young or old) into that database, even if they tell you that you are not eligible for their services that is the whole point!!

If Illinois counts you in this PUNS database, and you are not being served, they will then have an unmet needs population, and they will finally have to do something about it. Here’s where to find your local PAS agency: http://www.dhs.state.il.us/OfficeLocator/. Click on your county, then under step 2, click on Developmental Disabilities. Then CALL THEM — an intake person will call you back, get your information, then you sign a few papers. Only then will you and your child show up in this database. This database will be used to make policy in Illinois and we need to be included.

Christopher M. Kennedy
Chairman, Legislative Committee Autism Society of Illinois

Congress Passes IDEA Reauthorization Bill

November 30, 2004

On Friday, November 19, 2004, Congress passed legislation to reauthorize the Individuals with Disabilities Education Act, otherwise known as IDEA (H.R.1350). The House and Senate voting followed three weeks of deliberations, and reviews of several versions, before the IDEA conference committee agreed upon a final version of the bill on November 17. The bill is now before the President for his signature.

ASA leaders such as incoming ASA President & CEO Lee Grossman played a critical role in having the voice of the autism community heard in the development of this legislation. ASA’s government relations firm, Parry, Romani, DeConcini and Symms (PRDS), was integral in securing opportunities to speak and present to key members of Congress working on this legislation. Recently, former Senator and PRDS partner, Steve Symms, accompanied Grossman to the IDEA conference committee’s last public hearing where the bill’s language was finalized.

This 30th anniversary reauthorization increases overall spending for special education programs by $2.3 billion each year through 2011 and will provide funding to desperately-needed services and programs as well as allow expansions and new efforts benefiting the autism community. While still subject to the annual appropriations process, IDEA looks to raise the level of federal per-pupil special education spending from a current 19 percent average to 40 percent of total costs over the next six years.

Another major priority for ASA was the maintenance of autism as a “classification” or category, which was achieved in the final version. The bill also includes specific provisions for developing and improving programs to train special education teachers to develop an expertise in autism spectrum disorders. This addition was originally a separate bill (HR.1700) sponsored by Representative Chris Smith (R-NJ) and Mike Doyle (D-PA), co-chairs of the Congressional Autism Caucus, and supported by ASA. One potentially contentious section, from the perspective of the ASA and the autism community, was the bill’s inclusion of new discipline provisions. The House version had sought to allow schools to discipline special education students the same way as other students. The final version, similar to a previous Senate version, maintains the manifestation determination (i.e., protecting a child with disabilities from punishment if the behavior is the result of a disability) with modifications intended to simplify the process. It does, however, include exception for cases involving guns, bombs, drugs, or serious bodily injury. The final version does allow transfer of a child to an alternate setting for up to 45 days for such serious cases while that determination is made.

As is the current law, the final bill requires that students with disabilities continue to be provided educational services when suspended or expelled for more than 10 days, a point ASA was very vocal about. New provisions for early screening and interventions for infants and toddlers, another ASA priority and focus of much of our efforts, are included within the bill’s language, as was the provision for family support services, including training and counseling. HR.1350’s discussion regarding retention of the one-year IEP scheduling does not fully meet what ASA called for. While mandating that IEPs need to be accomplished at least every three years, it does not mandate annual reviews. However, the final version does provide for “on demand” IEP review with joint parental and educational authority consent and recommendation.

While transitional services, long an ASA priority, were addressed, the bill before the President fell short of ASA’s strongly advocated recommendations. Rather than mandating or providing for transitional planning to occur at 14 years of age, HR.1350 provides for such planning to begin at 15 years of age as part of a final three-year IEP goal development. Under the current IDEA version, monitoring and enforcement policies remain primarily dictated at the state and local levels. Rather than adopting a set of federal metrics for standards of quality and program effectiveness, HR.1350 allows individual states to draw up their own benchmarks and submit an annual compliance statement to the federal government.

While each state’s plan will require approval of the U.S. Secretary of Education, there are no clear parameters for qualifications for approval other than the required content of such compliance plans rather than setting actual benchmarks of success. Better strides were made in the area of parental complaint and the procedures managing those complaints. HR.1350 now allows for extending the time for submitting a complaint from one to two years, as long as such a period complies within applicable state level guidelines. It also allows for indefinite extension for filing of a complaint if the parent was inhibited from raising concern earlier, or if information was withheld from the parent or a false representation was made that would form the basis for all or a portion of the complaint, or if such actions were done during any subsequent procedures.

While procedures available for answering complaints have also been expanded to include mediation services and a new appeals structure that offers more opportunities to parents in resolving issues, limitations remain against raising issues at any hearing not specifically noted in an original complaint. While the ASA recognizes that the new bill is not perfect, the necessity for annual re-appropriation will actually provide an opportunity for ASA to help fine-tune the law in the future. ASA has already planned a proactive strategy assuring the autism community's voice is heard in this matter’s discussions each year.

Assistive Technology Act of 2004 Passes

On October 8, the U.S. House of Representatives passed the Assistive Technology Act of 2004 (H.R. 4278), sending it to President Bush for his signature. The Senate had passed this legislation on September 30. This legislation reauthorizes and reforms the Assistive Technology Act, which was created in 1988. The Act primarily funds state programs that provide assistive technology (AT) devices and services to individuals with disabilities. This law is an important component in ensuring that individuals with disabilities can access assistive technology to attend school, maintain employment, and live independently. Some features of H.R. 4278 include:

• The 60/40 and 70/30 split in funding for state activities (States can allocate the higher percentage of the resources to State level activities and spend no more than the lower percentage on State leadership activities. State level activities are more focused on directly giving individuals with disabilities assistive technology access and services, while State leadership activities are more administrative).
• A minimum state grant of $410,000.
• A sunset provision is waived, so that AT will now be regularly reauthorized.

The following is a press release from the House Committee on Education and the Workforce:

McKeon Bill to Expand Access to Technology for Individuals with Disabilities Approved by House, Ready for President's Signature
The U.S. House of Representatives today overwhelmingly passed legislation authored by 21st Century Competitiveness Subcommittee Chairman Howard P. "Buck" McKeon R-CA) to expand access to technology for individuals with disabilities. The bill, the Assistive Technology Act of 2004 (H.R. 4278), is now headed to President Bush for his signature.

"This bill shifts the focus of the program to provide greater benefit to individuals with disabilities. Our goal is to help states get more assistive technology directly into the hands of individuals with disabilities," said McKeon. "I know this will help states continue to make progress in their efforts to expand access to assistive technology, and that increasing numbers of individuals with disabilities will be able to participate in society more fully everyday."

The bipartisan bill, approved last week by the U.S. Senate, will strengthen assistive technology programs by refocusing resources to provide more direct aid to individuals with disabilities. By requiring states to spend the majority of their assistive technology grants on activities that directly benefit individuals with disabilities, the Assistive Technology Act of 2004 will help guarantee individuals will have greater access to assistive technology. The bill encourages states to invest in the programs that have been shown the most effective in providing assistive technology devices.

Rep. John Boehner (R-OH), chairman of the Education & the Workforce Committee, praised the bill's reforms. "This bill is a milestone for Americans with disabilities who depend on assistive technology to improve their quality of life," said Boehner. "By devoting fewer resources to building bureaucracy, this bill will expand access to needed technology for Americans of all ages living with disabilities." A summary of the Assistive Technology Act of 2004 can be accessed at:
http://edworkforce.house.gov/issues/108th/education/at/
billsummary.htm

Illinois Legislative Update on Education

On July 30, 2004, Governor Blagojevich signed into law Public Act 93-0842, formerly Senate Bill 3340. This was the Omnibus Appropriations Bill, otherwise known as “The Budget,” which we all heard so much about and which runs to 754 pages. The Act includes funding for education and among the highlights for the Illinois autism community was an appropriation of $2.5 million for a Grant to the Autism Project, for an Autism Diagnosis Education Program for Young Children. The bill also includes an increase in General State Aid to school districts of approximately $155 per student and provides for a $28 million increase in Special Education Transportation and a $7 million increase in special education private tuition (but does not provide full reimbursement—prorations are expected to be around 97%). Appropriations reductions were seen in the reading improvement block grant, the bridges program, alternative learning/regional safe schools, the state pension fund. There was a reduction of $73 Million in Downstate Retirement and a $2 million increase in state board administration

U.S. House Funding Panel Increases Spending on Federal Autism Programs

On July 29, 2004, the House Appropriations Committee approved increased funding for autism-related research and surveillance programs at the Center for Disease Control and Prevention (CDC) and directed the National Institutes of Health (NIH) to devote sufficient resources to the autism research agenda for fiscal year 2005. The Committee provided over $2 million in increased funding for CDC's surveillance initiative, the ADDM (Autism and Developmental Disabilities Monitoring Network) and CADDRE (Centers for Excellence for Autism and Developmental Disabilities Research and Epidemiology) centers, and the Autism Awareness and Education Campaign. This brings the total funding for autism activities at the CDC to $18 million. ASA's advocacy efforts played an integral role in securing an increased federal commitment to autism research, surveillance, and education.

Illinois Autism Bill Becomes Law

On July 21, 2004, Governor Blagojevich signed into law House Bill 4502, requiring the Department of Human Services to report on autism, including methods for increasing federal matching dollars for families in Illinois to utilize home and community supports. Congratulations and thanks to the bill’s sponsors in the House and Senate. And, thanks to all of you who called and wrote to your legislators. Special thanks to mom and ASI member Laura Cellini, who worked this bill tirelessly (and for free). This bill is an important step in making Illinois more responsive and progressive in its policies toward families affected by autism, but it is only the beginning. Once DHS reports its findings, we will need to push for the Legislature and the Governor to follow up and bring Illinois in line with the best states in the country for autism issues, instead of the worst. There is much work to be done and we will need your help if we are to get anywhere. Please keep checking here and be sure to give ASI your updated e-mail and address information so we can notify you of any developments.

In the meantime, you can read the bill’s text here: http://www.legis.state.il.us/legislation/publicacts/
93/PDF/093-0773.pdf

Christopher M. Kennedy
Chairman, Legislative Committee Autism Society of Illinois

Representative Dan Burton Likes a Good Story

As many of you may know, Congressman Dan Burton of Indiana is a national leader on autism issues. He is asking parents of children with autism spectrum disorders to send in their personal stories so he can show the impact autism has on America’s children and families. When was the onset of autism? What were the surrounding circumstances? What are the hurdles you face in attempting to secure appropriate educational placements and services? What are the hurdles you face in attempting to secure or access insurance coverage/benefits? What are your child's prospects for the future? He and his staff read letters from all over the country. Congressman Burton chooses excerpts that he will read during speeches on the floor of the House of Representatives, usually once or twice per week when Congress is in session. The speeches are broadcast on C-SPAN. If you have a story you would like him to know about, please send your letter to the address below:

Congressman Dan Burton
Attention: Mindy Walker “Autism Family”
2185 Rayburn HOB Washington, DC 20515
You may also fax to: 202-225-0016

Note that anything sent to the Congressman’s office should be polite and as concise as possible. Please be sure to include your name and address—if you do not want your name or last name mentioned, please say so. You may send a photo of your child if you wish, but it will not be returned to you. Because of security precautions, please be extra careful when sending letters to Congress. Because of the volume of letters, they will not be able to personally respond and there is no way for his staff to tell you if he will read your story or when. This is another excellent opportunity for us as parents to have our voices heard and let the world know what the autism epidemic is doing to us and our families. Please be sure to send a copy of your letter to us at the Autism Society of Illinois, so we can use your stories to convince legislators and policymakers here in Illinois to help our cause.

Thank you.

Christopher M. Kennedy
Chairman, Legislative Committee Autism Society of Illinois

Family Opportunity Act

On May 6, 2004, the U.S. Senate passed the Family Opportunity Act (S. 622), a state option which allows families of children with disabilities with incomes up to 250 percent of poverty (approximately $45,000 for a family of four) to buy into Medicaid. Senators Charles Grassley (R-IA), Edward Kennedy (D-MA) and Max Baucus (D-MT) sponsored the committee substitute offered on the Senate floor. Action now shifts to the House, where a companion bill (H.R. 1811), introduced by Reps. Pete Sessions (R-TX) and Henry Waxman (D-CA) is pending. If it passes, the bill will still require each state to opt in to the program and each state can set an income threshold below 250% of the poverty level. So, if this passes and gets signed into law, we will need to convince Springfield to implement it. Once this happens, this bill could expand coverage for a lot of Illinois families affected by autism. Stay tuned for further updates.

House Resolution 605 - A Win for Autism

On May 5, 2004, the U.S. House of Representatives passed House Resolution 605 by a unanimous 421-0 vote, which calls attention to autism issues. Introduced by Rep. John F. Tierney (D-MA), the resolution recognizes the importance of increasing awareness of autism, supporting programs for increased research and improved treatment of autism, and improving training and support for individuals with autism and those who care for them. The resolution doesn’t actually do anything, so it doesn’t cost anything (which is probably why it was unanimous), but it does show support. It also puts everyone in the House on record supporting not only our issues, but some of our data and our concerns as well. The next step is getting more appropriations (actual money increases) for research, IDEA, Medicaid waivers and other more helpful forms of support... Those issues will be on the 2004-2005 agenda for ASA and ASI.

• Click here to view a PDF version of HR 605