ribbonYear 2005 Illinois Legislation Initiatives

The following letters are the opinions of the undersigned authors and do not necessarily represent the views of AutismNews or the host of this website.  AutismNews does not receive any public moneys and is not an section 503(c)(3) IRC charitable organization.
Autism Society of Illinois 2006 Legislative Agenda:
1.    Provide flexible, direct services to families/individuals with autism for community and in-home supports:
       a.    establish a Medicaid waiver for children, and
       b.    increase funding through existing waivers and support mechanisms for adults;
     * requires legislation and appropriation 

2.    Enhance insurance coverage for autism treatments:
       a.    extend mental health parity minimums to HMO's and individual policies, and
       b.    mandate specific coverages for autism above and beyond parity requirements;
     * requires legislation

3.    Improve public schools' performance and capacity:
       a.    increase teacher training, and
       b.    establish certification in areas impacting instruction and supervision of classes involving children with autism (consistent with Corey H. case). 

     *requires changes in ISBE rules and policy


From Chris Kennedy, April 9, 2005:

Thank you to every adult and child who attended the first-ever Illinois Autism Lobby Day in Springfield on Wednesday! Despite the difficulties every family faces getting away on a weekday and bringing our kids, we had 200 people inside the Capitol and every legislator knew we were there (hard to miss us!). We had legislators crying during the press conference (it helped that many of us were crying too). We were covered by two TV news programs, NPR radio, and the Springfield Journal-Register. We have already picked up a new sponsor for our Autism Reporting Act, and we have secured promises from several more legislators to support our cause.

Please follow up NOW with your legislators and get them on board. We need to use this momentum to get our bills passed and our funding increased/restored. Look up your legislator here:
http://www.elections.state.il.us/dls/pages/DLSAddresscrit.asp and call them.
Every bill needs to get passed by its house by the end of next week.
Call your senator and ask them to co-sponsor and support

Call your representative and ask them to co-sponsor and support And ask them to push for direct supports to our families! The DHS autism task force is working on a Medicaid waiver program and we will need legislative support to get that going.

Please report back to me and let me know how your legislator reacts and whether they are willing to get involved.

Here are the participants who were able to take time out of one of the busiest days in the session to address us. Please let me know if I'm missing anyone and if there are other news outlets that covered the events.

Officials present for Autism Lobby Day:
Lt. Gov. Pat Quinn
Senators: 7
Pres. Emil Jones, Maj.Whip Terry Link, DeLeo, DeMuzio, Garrett, Ronen, Shadid

Representatives: 11
Bellock, Coulson, Davis, Feigenholtz, Mathias, May, Moffatt, Mulligan, Ryg, Stephens, Washington

DHS Secretary Carol Adams

Thanks to all the participants. Special thanks to Lt. Governor Pat Quinn and Rep. Patti Bellock for setting up the events, and to Kelly Larios at ASI for doing all the organizing and running around. Thanks also to Bill David of Sign Express, who donated much of the printing, to HarrysButtons.com for supplying awareness buttons, to Sharon Rosenbloom and Thomas Balsamo for donating copies of the SOULS book for us to give to legislators, and to Shawna Egan for helping arrange the displays. Our apologies to those who had rsvp'd to get into the blue room and couldn't-we did not have the security to exclude people who did not sign up, and we were unable to move it to a larger room. We are trying to obtain the press coverage and video
footage from the press conference and will make it available through ASI's website: www.autismillinois.org <http://www.autismillinois.org/>
Please pick up the phone and call now to capitalize on the attention we have all worked so hard to get. Thanks again.

Chris Kennedy

Autism Society of Illinois
Legislative chairman

We have also seen a number of sponsors sign on to our bills (see below). If
you want to see a bill, type in its number at www.ilga.gov

Please call to thank the Senators who voted for us and KEEP CALLING on other
bills to get your legislators on board. If you don't see them listed as a
co-sponsor, make it your job to get them on. And remember to thank them
when they do support us. Your personal connection really works, and it can
help all of us in Illinois.

Developments since Wednesday's Autism Lobby Day:

Senate Bill 1698: Autism Reporting Act:

new sponsors and passed by full Senate
Added as Co-Sponsor
<http://www.ilga.gov/../senate/senator.asp?GA=94&MemberID=985> Sen. Kirk W. Dillard

Third Reading - Passed;
<http://www.ilga.gov/legislation/votehistory.asp?GA=94&DocNum=1698&DocTypeID =SB&GAId=8&LegID=19885&SessionID=50> 057-000-000

Added as Co-Sponsor
<http://www.ilga.gov/../senate/senator.asp?GA=94&MemberID=1069> Sen. Pamela
<http://www.ilga.gov/../senate/senator.asp?GA=94&MemberID=1052> Sen. Jacqueline Y. Collins
<http://www.ilga.gov/../senate/senator.asp?GA=94&MemberID=1000> Sen. William E. Peterson
<http://www.ilga.gov/../senate/senator.asp?GA=94&MemberID=1050> Sen. Martin A. Sandoval

Senate Bill 3: Giant Steps ISBE pilot program: new sponsors

Added as Co-Sponsors
<http://www.ilga.gov/../senate/senator.asp?GA=94&MemberID=979> Sen. James F. Clayborne, Jr.
<http://www.ilga.gov/../senate/senator.asp?GA=94&MemberID=987> Sen. Debbie DeFrancesco Halvorson
<http://www.ilga.gov/../senate/senator.asp?GA=94&MemberID=996> Sen. Terry Link

Contrary viewpoint:

Does HB59 do more harm than good?

House Bill 59 extends Section 370c of the Illinois Insurance Code (215 ILCS 5/370c), which will otherwise expire on December 31, 2005.

Section 370c has created a tension in strategies.  Most patients are better off with the general coverages of their health plans.  Autism is technically a syndrome, not an illness since it is defined through its symptoms, not its causes.  Autism has physical and organic causes (encephalopathy, epilepsy, gut reaction, etc.) which may manifest themselves with mental symptoms.  (See Kunin and Phillips.)  Since general medical insurance coverage does not have the severe restrictions that restrict mental health coverage (e.g., number of visits or dollar maximums), patients were better off  claiming that autism wasnot a mental illness.  Now the Illinois legislature has done us a favor by stating that PDD is a mental illness.   On the one hand, it is good to have some coverage mandated.  On the other hand, will we see insurance companies trying to deny autism-related claims under general medical coverages because they can point to the legislature's statute that autism is a mental illness, and thus limiting coverage to the mental illness coverages?   You must be vigilant to assure that claims are submitted for a physical diagnosis to avoid the trap.

For more discussion of health coverage parity laws, and a copy of the statute at issue, see the AutismNews insurance page.

2003 Archive

The National Center for Learning Disabilities
maintains a site a Cap-Wiz page page:  http://www.capwiz.com/ld/home/   It lists pending bills in Congress.  If you put in your Zip Code, the page will list your representatives.  For some bills, it helps sent an email to them.  To contact your Illinois representatives in Springfield, go down to the 2003 Objectives near to bottom of this page.

New letter added January 28, 2003:

Senator Durbin and an anti-family amendment of  IDEA.

   Senator Durbin of Illinois has conceded an amendment in Congress to amend IDEA to cap the amount of legal fees payable to the parents when a school district violates the law.  Durbin's office  reports that he does not believe in a cap, but agreed to a compromise which increased the cap to $4,000.
   As the National Council on Disabilities found (Back to School on Students' Rights), enforcement of IDEA has been left to the parents.  When School districts refuse to provide a free appropriate education, parents are forced to commence a due process hearing to preserve their child's education.  School Districts drag out the proceedings and force parents to incur tens of thousands if not hundreds of thousands of dollars in legal fees even for cases involving minor modifications.  Currently the law requires schools to reimburse parents for these fees when the schools are proved wrong.  The Senate believes that this reimbursement should be capped at $4,000, a small figure for the work involved.  The amendment would first apply just to the District of Columbia, but it could be imposed on the other States later.  The District of Columbia has no senators or representatives.  The students in DC are begging the constitutents in Illinois to write to Durbin today to stand by the opposition to the fee cap.  Illinois could be next.  Your right to a due process hearing will be rendered useless if it costs you your house to get the school to live up to its duty.  Write to Sen Durbin today and refer to House bill : HJ Res. 2 (Joint Resolution 2).  The Senate amended this with Sen. Amendment 1.

Senator Durbin's Response below (added February 24, 2003)
Sample letter

Contact Senator Dick Durbin
332 Dirksen Senate Office Bldg.
Washington, DC 20510
Phone (202)224-2152
TTY (202)224-8180
Fax (202)228-0400
Kluczynski Bldg. 38th Fl.
230 South Dearborn
Chicago, IL 60604
Phone (312) 353-4952
Fax (312)353-0150
525 South Eight Street
Springfield, IL 62703
Phone (217)492-4062
Fax (217)492-4382
701 Court Street
Marion, IL 62959
Phone (618)998-8812
Fax (618)997-0176
E-mail Senator Dick Durbin
Senator Peter G. FitzGerald
555 Dirksen Senate Office Building
Washington, D.C. 20510-1305
Phone: (202) 224-2854
Fax: (202) 228-1372
230 S. Dearborn St., #3900
Chicago, IL 60604
Phone: (312) 886-3506
Fax: (312) 886-3514
Send a copy to your Speaker of the House, U.S. Congress
Office of Dennis Hastert
235 Cannon HOB
Washington, D.C. 20515
Phone: (202) 225-2976
Fax: (202) 225-0697
Office of Dennis Hastert
27 N. River Street
Batavia, IL 60510
Phone: (630) 406-1114
Fax: (630) 406-1808
Office of Dennis Hastert
119 W. First St.
Dixon, IL 61021
Phone: (815) 288-0680
Fax: (815) 288-0743
E-mail Dennis Hastert

While you are at it, why not write to Congress to fully fund IDEA?

After the U.S. Supreme Court ruled that schools could not exclude children with disabilities or unreasonably segregate their facilities, Congress passed laws to implement the Supreme Court's rulings.  Congress promised funds to those States which showed their compliance with disabilities laws.  Congress committed to providing 40% of the cost of special education, but has never allocated 10-15% of the costs.  Congress is currently debating how much money to allocate to IDEA in the next budget.  Now is the time to write to Congress and show your support.  Contact Speaker Hastert and Senators Durbin and Fitzgerald.  Also write to the congressional representative for your district.

Text of Senator Durbin's Response to the outcry:

Jenni Engebretsen
Washington Press Secretary
U.S. Sen. Dick Durbin
332 Dirksen Senate Office Building
Washington, D.C. 20510
(202) 224-7115
(202) 228-5694 fax
"At times there are consequences to Republican control of Congress. One
of those consequences arose recently during the debate on the DC
appropriations bill, when the Republican leadership inserted language in the
bill placing a cap on attorney fees for children who are forced to take
the school district to court to secure the education the law guarantees

"I worked to raise the cap to a level above the average payment of
attorney fees in these types of cases, not because I support caps -- I
don't -- but because it was the best I could do with the Senate vote in

"I continue to oppose caps on attorney fees and believe the conference
committee that will write the final version of this bill should drop
the cap entirely so that the District of Columbia can make all legitimate
payments while preventing the clear abuses in this critical special
education program."

Also, following please find the text of Durbin's Congressional Record
statement further clarifying his position on various aspects of this


Mr. DURBIN.  Mr.  President, I intended to offer an amendment to
address fundamental concerns that a provision in this bill discriminates
against children in need of special education services because they happen
to live in the District of Columbia.  That provision imposes a
/limitation of $3,000 on how much the District of Columbia may pay per case in
attorney's fees to plaintiffs who prevail in litigation brought against
the District of Columbia Public Schools under the Individuals with
Disabilities Education Act (IDEA), in order to enroll their children in
special education services.

I would prefer that we eliminate section 135 from the bill entirely.
Congress should not impose restrictions on the District of Columbia's use
of local funds. If someone is raising a child with a serious learning
disability and wants that child evaluated for enrollment in a special
education program, we have provisions in the law across America governing
access to services.  This law provides for the awarding of reasonable
attorney's fees at prevailing community rates to parties who prevail in
their due process proceedings.  It is only in the District of Columbia
that some Members of Congress want to unfairly limit the amount paid to
those attorneys.  These same Congressmen and Senators would never
impose such limitations on their own States and districts. In last year's
Senate appropriations bill for the District of Columbia, the Senate
overwhelmingly supported an amendment I offered to soften the impact of a
$2,500 attorney fee limitation by designating certain situations !
in which such a cap would not apply.

I have been engaged in extensive discussions with my colleague, Senator
Hutchison, the chief proponent of section 135, which have led to a
modification of that provision.  The nature and amount of attorney fees in
special education cases brought under IDEA raise serious questions
about both the adequacy of in-school programs to serve special education
students and some aggressive activities of certain attorneys and firms.
The modification raises the limit on the amounts which may be paid to
$4,000 per action.  It also precludes the payment of the fees of any
attorney or firm whom the Chief Financial Officer of the District of
Columbia determines to have a pecuniary interest, either through an
attorney, officer, or employee of the firm, in any special education diagnostic
services, schools, or other special education service providers.

I note that this bill mandates that the Chief Financial Officer of the
District of Columbia require disclosure by attorneys in IDEA cases of
any financial, corporate, legal, board memberships, or other
relationships with special education diagnostic services, schools, or other
special education service providers before paying any attorney's fees. The
Chief Financial Officer may also require attorneys in special education
cases to certify that all services billed in special education were
rendered. The bill also directs that the Chief Financial Officer will
prepare and submit quarterly reports to the Committees on Appropriations of
the Senate and the House of Representatives on the certifications and
the amount paid by the government of the District of Columbia, including
the District of Columbia Public Schools, to attorneys in cases brought
under IDEA. The bill further allows the Inspector General of the
District of Columbia to conduct audits of the certification to ensure a!
ttorney compliance.

I endorse the Committee Report's strong recommendation that the Council
of the District of Columbia, in cooperation with the Mayor of the
District of Columbia and the District of Columbia School Board, develop
legislation to address conflicts of interest in special education cases.

I hope these provisions will produce needed accountability.  I hope
these provisions will help prevent manipulative practices by a few which
unfortunately denigrate the honest, dedicated work of the vast majority
of the attorneys who devote their careers to serving vulnerable
families and children through legal representation in special education
placement cases.

It is my expectation that the reauthorization of the Individuals with
Disabilities Education Act and reform efforts by the District of
Columbia Public Schools will make the imposition of caps on how much the
District of Columbia may pay in attorney's fees in IDEA cases unnecessary in
subsequent appropriations bills.

This contorversy started from the following Washigton Post Editorial
 To view the entire article, go to http://www.washingtonpost.com/wp-dyn/articles/A16726-2003Feb2.html

 Capping Attorney Fees

  THE BIPARTISAN DUO of Republican Sen. Kay Bailey Hutchison of Texas and
Democrat Richard J. Durbin of Illinois rode to the rescue of the D.C. Board
of Education and School Superintendent Paul L. Vance recently when they
amended the omnibus spending bill to put a $4,000 cap on attorney fees in
special education lawsuits filed against D.C. public schools. The
unanimously adopted amendment also bars payments to lawyers who have a
financial interest in related special education businesses. (The omnibus
spending bill, approved 69 to 29, now goes to a conference.) If this sounds
familiar, it should. The Senate adopted a similar fee-cap provision in 2001,
but it was killed in conference. The ultimate fate of this year's amendment
is anyone's guess. The Hutchison-Durbin amendment provides financial relief
for the school system. But will the measure hurt children?

  The cost to the school system of attorney fees from
special-education-related administrative hearings is enormous. When the cap
that Congress imposed in 1999 was removed in fiscal 2001, fees skyrocketed
from $4 million in fiscal 2001 to $14 million in fiscal 2002, according to
Ms. Hutchison. The General Accounting Office reports that had it not been
for the 1999-2001 fee cap, the District would have paid $27.4 million
instead of the $10 million it actually paid. The removal of the cap also
appeared to be an incentive for attorneys to demand more administrative
hearings. The number of special-education-related administrative hearings
increased from approximately 190 per month in fiscal 2001 to 230 per month
in fiscal 2002. The current rate of special education hearings puts the
District in the national forefront. According to Ms. Hutchison, the District
accounts for 40 percent of all special education due process hearing
requests in the country under the Individuals With Disabilities Education
Act. How can that be?

 Cap opponents argue that caps prevent children with disabilities from
getting what the law requires because they limit families' ability to hire
effective advocates when the school system breaks the law. Opponents also
note that the school system pays attorney fees only if it loses, and that
the system loses if it's wrong in the first place. But is the litigation
primarily concerned with gaining access to good special education programs?
The school system maintains that only 15 percent of the hearing requests
concern issues related to education. The overwhelming majority, school
leaders say, involve procedural and implementation issues, which could and
should be handled outside the hearing process. Thus, school leaders
maintain, the winners under a no-fee-cap system are lawyers, not students
who could benefit from having more education dollars directed to their
classrooms or their transportation needs.

  Our one regret is that this issue is being played out on Capitol Hill
instead of in the District government. City leaders, not members of
Congress, are responsible for providing a high-quality education for all
students in the District. Instead, the city has punted its special education
problem to the House and the Senate, two institutions poorly equipped to
care for the District's children.

New letter added January 21, 2003: Start a State IDEA Task Force

I am a mother of a little boy with autism and I live in Springfield and
work as a lobbyist.

I have been advocating for autism services for the past two years and
was successful in the establishment of a recent pilot project that will
provide some professional training and diagnostic services.  Working on
this issue has put me in contact with parents and providers from all
over the state and I'm very aware that we have many problems and issues
that need to be addressed in order for Illinois to improve services for
our children.

Having said that, this is not the year to propose anything with a heavy
price tag but I believe it would be possible to pass a bill to
establish a legislative task force which could look into issues of compliance
with IDEA by school districts, ISBE's monitoring and handling of
complaints, waiting lists, vocational opportunities, respite/home services,

A formal report would eventually be submitted to the General Assenbly
and Governor's Office. !  Please ask your subscribers to contact their
legislators now and let them know about your child(ren) with autism
spectrum disroders and the challenges we face in accessing adequate
services in Illinois.



More 2003 Objectives

Letter writing and telephone call campaign

Happy Holidays Friends,

I hope you all are having a glorious holiday season. I
believe the new year will bring us tremendous success
in gaining new rights, resources and services for
people with developmental disabilities in Illinoisóin
fact, Iím counting on it!

Now is the time to bombard our state senators and
representatives with letters, phone calls, e-mails and
even personal visits. The two issues I hope you will
join me in campaigning on behalf of at this time are:

1. Funding to make the benefits of the Family
Assistance and Home-Based Support Services programs
available to all of the eligible disabled children and
adults who so desperately need them;

2. State-funded and/or Ėsubsidized comprehensive, intensive
educational, therapeutic and intervention services for
children and adults with autism.

Letters donít have to be long or fancy; a simple
note, or even a post-card will do if you donít have
time to write lengthy correspondence. What is
important is that we contact our state senators and
legislators now, while they are still in their
district offices trying to decide what issues to put
on the agenda in Springfield come January 13. I think
you will all agree that there is no issue more
pressing than providing appropriate resources and
services for children and adults with developmental
disabilities and their families; we need to
communicate this to the elected officials who have
been empowered to assist us. Please call, write,
e-mail or visit your state senators and
representatives. Also, please encourage every other
concerned person you know to participate. Working
together, we CAN make a difference!

I have compiled a list of state senators and
representatives that was current prior to the November
5 general election. The vast majority of state
senators and representatives retained their seats;
however, there were some changes.    If you know or
suspect that the senator or representative listed for
your district is no longer valid, please check the
(unofficial) election results at
http://www.voterinfonet.com/11502results/ or
Results from the November 5 general election can also
be obtained by clicking on the links located at

*Two representatives have also died.

If you donít know who your state representative
and/or senator is, you can find out by visiting
or by calling your local election boardóyou can find
the number by looking in the blue or white pages in
your telephone book or by calling 411.
 [try also  http://www.legis.state.il.us ]

To gain the maximum exposure for our two issues, I
suggest that each of us write one letter regarding
each issue and send it to our state senator and state
representative AND to Governor-elect Rod Blagojevich,
House Speaker Michael Madigan and Senate President
Emil Jones. If you canít write to everyone, do what
you can; every little bit helps. If our elected
officials are barraged with correspondence, phone
calls and visits from us, they cannot possibly ignore
our issues. Our concerns will become priorities for
them because we will make them priorities.

You can write Rod Blagojevich at:

Office of the Governor
207 Statehouse
Springfield, IL 62706
217-782-2239 TDD
217-524-4049 FAX
>It would be great to have a ton of letters waiting
when he arrives to be sworn-in on January 13.
>Iím looking forward to working with all of you toward
reaching our common goals in 2003!
Michelle McFarland-McDaniels

Hello (again) Friends,

To coincide with the statewide letter-writing
campaign for autism services,
Laura Cellini and I are working together to develop
language for a bill to be introduced in mid-late
January. Laura has already secured the support of at
least one legislator who will introduce a bill this
session. Thatís one of the reasons itís so important
that we start, writing, calling, faxing, e-mailing and
visiting our state representatives and senators right
now. We need to marshal as much support for this
effort as we possibly can!

 This is the wish list of provisions I would like to,
ideally, see inserted in the bill:

1. Education of parents, pediatricians, healthcare
personnel, caregivers, educators and service provicers
about the symptoms of ASD.

2. A statewide network of comprehensive autism
information and referral centers that house tools,
resources and experts who can provide guidance and
assistance to family members and treatment providers
of children and adults with ASD. I would also like for
these centers to provide information about best
treatment/education/intervention practices for
managing ASD.

3. State-funded and/or subsidized intensive,
home-based therapeutic services. I would like for
parents of children aged 0-3 to be made aware of all
of the services available for their children,
including ABA. I would also like home-based services
made available for children past the age of 3,
including school-aged children. A good model for the
types of services I would like to be made available is
the Puentes program at Illinois Masonic Hospital. The
program offers 1 year of moderately intensive,
home-based services available to families of children
up to age 6. Services are provided to families on a
sliding fee scale; it costs the hospital about $8,500
per child serviced. The program is multidisciplinary,
utilizing ABA, Floortime, PECS and a number of other
therapies. While the program provides far less than
the 35 hours per week recommended by most ABA
therapists, nevertheless, all children who have
participated in the program have shown tremendous
gains. Adopting this type of service model would be
create a win-win situation for families and the state

4. Regional lifeskills learning laboratories to assist
children and adults with ASD in acquiring the skills
necessary to lead productive, independent and
meaningful lives.

5. Creating and incentive for school districts to go
beyond the requirement of providing "appropriate"
educational services and creating programs that
provide "exceptionally beneficial" or "ideal"
educational services for students with autism.

6. Funding for school districts to provide education
and outreach to students and parents of typical
children regarding the needs and characteristics of
students with autism to ease their acceptance and
integration into the social environment at school. In
order to benefit from "inclusion," autistic students
need to interact with, not just be in the presence of,
typically developing children. By educating children
and their parents about autism, their level of
understanding will increase and they will be more
likely to accept, and even embrace, students with
autism. Similar programs need to be implemented in
workplaces where individuals with autism are employed.

7. Medicaid waivers need to be made readily available
to all individuals with autism who need them.
Insurance companies need to be compelled to pay for
necessary treatment for adults and children with

8. All school districts in the state should be
required to apply for Medicaid reimbursement for the
full range of services reimburseable by Medicaid.

9. A variety of employment options--sheltered, secure,
supported and competitive--and the training and
support necessary to help individuals with autism
succeed in them need to be made available.

10. A range of residential options need to be made
available to children and adults with autism.

11. School districts need to be required to provide
either year-round educational options for students
with autism or they need to be required to pay for
services provided by public or private schools outside
of their districts when students with autism require
year-round educational services to prevent regression.
School districts need to be required to provide
home-based ESY services beyond the ESY services they
typically provide when such services are necessary to
to prevent regression in students with autism.

Please e-mail any provisions you would like included
in the bill to Laura at Lclln914@cs.com or to me at
jmicmac@yahoo.com. We am very optimistic about this
project! How can such a passionate, dedicated and
committed group of people fail? We are looking forward
to working with all of you to make this project a
Remember, working together, we CAN make a difference!


Michelle McFarland-McDaniels

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