2006 Legislation

Autism Society of Illinois 2006 Legislative Agenda

State Supports
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 appropriation (and possibly legislation)

Insurance
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

Schools
Improve public schools' performance and capacity:

a. establish certification for Board Certified Behavior Analysts to impact instruction and supervision of classes involving children with autism (consistent with Corey H. case), and increase teacher training capacity.

*requires changes in ISBE rules and policy

The Autism Society of Illinois is the state's oldest and largest autism organization. Its mission is to promote through advocacy, public awareness, education and research, lifelong access and opportunities for persons within the autism spectrum disorder and their families in order that they may be fully included, participating members of their communities.

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

Legislative Update January 2006

Advances in 2005 have made this an outstanding year for autism legislation in Illinois, and 2006 promises to be even better. Four autism bills were signed into law by Governor Rod Blagojevich this year, and proposed cuts were restored to the state's only autism teacher-training program. ASI held its first ever Autism Lobby Day in April, which included a press conference with Lt. Governor Patrick Quinn, Senate President Emil Jones, and twenty other legislators.

We continued to participate in and lead the Autism Task Force, which we had put into law in 2004. This fall, the Autism Task Force finalized its report to the legislature and Representative Lee Daniels, Senator Susan Garrett, Representative Patti Bellock, and Representative Willie Delgado, along with many of their colleagues, led committee hearings into the subject of autism. More than 250 people attended three hearings in Chicago and Springfield and legislators heard from dozens of parents who presented powerful testimony as to the challenges our families face. A thank-you again to everyone who participated-it is making a difference!

The momentum for our cause is stronger than it has ever been. We need to continue our efforts to establish programs that actually start helping individuals with autism and their families directly-and start improving lives. This year, we are asking the Governor and the General Assembly for a children's Medical waiver program, which we hope will begin providing essential home supports and services for at least 2000 families statewide, at a cost of at least $30 million. We are also seeking improved insurance coverage and a changed definition of how Illinois classifies our children/adults with autism so they are not unfairly excluded from available services. Next year, ASI will work to have a strong voice in the renewal of the adult Medicaid waiver, to ensure that more services and programs are available to those with autism and to ensure that their families have choices and power to direct funding.

We need your help to do all of this! Please make a donation to the Legislative Committee, join the Legislative Committee, and contact your legislators with ASI's message. Although we have taken the lead in advocating to Improve Illinois' handling of autism, our board is made up of volunteers and we need your help. No one can do this for you. Get involved now!

Also, mark your calendars: Autism Lobby Day will be March 23 in Springfield. Thanks to the help of Rep. Patti Bellock, this year we will have space in the Capitol Rotunda and will invite the Governor. We hope he will use the opportunity to announce a new Medicaid waiver for autism! We need you and your loved one with autism to be there, so please make your plans now. Also, ASI will provide tables for providers and other autism organizations, so please e-mail Kimberly Maddox soon if you or your organization are interested.

Thanks for your support in making Illinois a better place for our families!

Legislative Update April 2006

Illinois continues to lag far behind its sister states in providing services for individuals with autism. Last year, we held a series of legislative hearings, which many of you participated in, to show the need for the state to improve how it treats our families. We also set out an agenda that continues to call for more services for our families to use so our children and adults with autism can have a decent chance at life. Families affected by autism need three main forms of support: 1) direct state services; 2) increased access to insurance coverage, and 3) improved school programs. We introduced several bills this year and have had a lot of success, but more work is needed RIGHT NOW. Time is running out, and the budget will be decided by the first week in May, so make your calls TODAY.

1. Funding for Families
Our top priority for 2006 was set up a Medicaid waiver program to provide direct supports to individuals with autism so they can remain in their homes and in our communities. We are pleased to report that the Governor has agreed to write a Children’s Medicaid Waiver for Children with Developmental Disabilities, including autism, by the end of this year. However, the budget at this time contains no new funding for this purpose, so no new families will be served by the waiver, at least not for several years.

We need to fund families now, and the way to do it is by expanding DHS’ 72D in-home supports program by $5 million. The budget is being decided behind closed doors RIGHT NOW, so call your state rep and state senator and get them to demand that $5 million be added to the budget for the 72D program. (See attached fact sheet.) You can look up your legislators by typing your address in here: http://www.elections.il.gov/DistrictLocator/AddressSearch.aspx

2. Health Insurance
We have also had success expanding health insurance, through House Bill 4125, which adds 20 hours of speech therapy to large group and HMO insurance policies for children with autism. This should result in additional services of up to $2500 per year for families on these types of policies. The bill was introduced and led through the House by Rep. Mary Flowers (D-Chicago) and led in the Senate by Sen. Susan Garrett (D-Highwood). It will take effect (assuming the Governor signs it into law) next year upon renewal of your policy. Note that not every insurance policy qualifies for this mandate.

3. Schools
The General Assembly has also passed House Bill 4987, which allows public schools to hire Board Certified Behavior Analysts, who often oversee programs for students with autism. This will not require schools to do this, but for many it will allow vastly improved expertise in autism and improved programs. This bill will also be on the Governor’s desk later this spring.

Finally, we have requested additional funding to the State Board of Education’s only autism teacher training program, the Illinois Autism Training and Technical Assistance Project. This program currently receives no state funding whatsoever, relying entirely on a federal discretionary grant. Through hearings and advocacy with the Board, they finally requested in their budget an additional $100,000 for the program, a small step, but a line item that can be expanded in future years. However, there is no guarantee that this funding will be reflected in the final budget. Please ask your state rep and state senator to support this funding during budget negotiations NOW.

Our success depends on you.

Please meet with your legislators. Get to know them and get them to know your loved one with autism. Remind them that our families need financial support, or our children will suffer terrible consequences. Autism is treatable, and the lives of these individuals can improve tremendously with the right help. Every person is different, and no single program or provider can do it, but the person’s family CAN. It’s time for Illinois to support our families.

Not only is this the right thing to do for families in need, but it’s the smart thing to do, too. Illinois will reap the economic benefits from relieving at least some of the enormous burden on families, and from helping keep individuals with autism in the community. Institutionalization costs over $120,000 per year — why not pay a fraction of that sum to prevent it and keep families together?

Nothing will change unless YOU change it. Please get involved.

Christopher M. Kennedy, Esq.
Autism Society of Illinois
Legislative Director

Autism Society of America
Government Relations Committee

Father of a child with autism

HB 4125 PASSES SENATE!

House Bill 4125 just passed the Senate this morning! The vote was 44-11 (the roll call is not available yet). The House vote last month was unanimous, 113-0. This is the insurance bill introduced by the Autism Society of Illinois to add 20 additional speech therapy hours per year for children with autism. Not all policies are covered by this, but many of you will receive additional benefits of up to $2500 per year to cover speech, which you know is a critically needed therapy for most kids with autism.

Special thanks to Senator Susan Garrett for her hard work leading this bill through the Senate, to Rep. Mary Flowers for her strong advocacy in getting it through the House, and to all our sponsors (see list below). The next step is the Governor’s desk to be signed into law later this spring. Thanks for your help and please be sure to thank your Senator and Representative for sponsoring this important bill.

ILLINOIS FAMILIES TAKE AUTISM TO SPRINGFIELD FOR “VOICE OF AUTISM DAY”
Hundreds of families form human chain in front of Governor’s office

March 23, 2006, Springfield, IL

They poured out their hearts, desperate parents telling of their frantic race to get help for their children, going into debt, resorting to public aid and sacrificing careers so their autistic children could receive necessary therapies. Families of people with autism joined hands today as a sign of unity in front of the Governor’s office at the Capitol. Their goal was to pressure legislators to support families affected by the nation’s fastest growing disability. Illinois was recently ranked 48th in the nation for its per capita spending to keep individuals with developmental disabilities such as autism with their families and in their communities.

Members of the Autism Society of Illinois (ASI), who are leading the charge, are lobbying legislators to provide funding for families, many of whom pay up to $60,000 every year to get their children needed services. Rep. Patti Bellock (R-Westmont) helped coordinate the “Voice of Autism” event and requested the presence of several lawmakers who attended, including Illinois Lt. Governor Pat Quinn, Secretary of State Jesse White, Comptroller Dan Hynes, and Senate President Emil Jones (D-Chicago), among many other legislators. 

“I strongly believe that Illinois should emulate other states and obtain federal matching dollars to keep children and adults with autism in their homes and communities, instead of paying to break up families and send children to institutions,” says Bellock. Other changes she supports include improved training for teachers who work with autistic children and improved coverage by insurance companies.

“The autism crisis has been ignored for too long in Illinois. Because the proposed state budget completely ignores individuals with autism and their families, it’s more important than ever for families, children, educators, doctors, therapists and other practitioners to show support for legislation supporting our children”, says Kimberly Maddox, Executive Director of ASI. “We encourage everyone to pressure legislators and the Governor to improve the difficult situation our families face in getting proper services for children in Illinois. There is still time to convince the Governor and other state leaders to direct state and federal dollars to help children with autism and their families,” Maddox added.

Many issues on the table include: direct funding support for families in need through a Medicaid waiver program for children with autism; extension of health insurance coverage (House Bill 4125); funding for the state’s only autism teacher training program; a bill to allow schools to hire behavior analysts with expertise in autism (HB 4987); and a change to the state’s definition of developmental disability that will stop excluding individuals with autism from receiving help.

Considering that one in every 166 children born today will be diagnosed with an autism spectrum disorder, autism is no longer rare. The Illinois State Board of Education reported 3,662 children between the ages of 3 and 21 who were receiving services in special education under the category of autism during the 1999-2000 school year. That number jumped by 125 percent to 8,293 children during the 2004-2005 school year. This dramatic increase is similar to what has happened in other states. However, other states have developed funding programs to support these families. Illinois has no such programs.

And because virtually no support exists for individuals with autism once they reach adulthood, some families are considering leaving the state and relocating where they can find vocational training, jobs and housing for their children. If a person with autism is institutionalized, the cost to the state to care for that person ranges from $3.9 million and $6.5 million.

House Resolution Passed re: Autism Services

May 4, 2006
Update on services for children with autism in Illinois

In most places, it goes without saying that individuals with autism and their families need and deserve support from the state, so they can live as fully and as independently as possible in our communities. The best way to do this, of course, is to directly support those families and provide them with access to services of their choosing, as many states have proven over the last two decades. This individualized support can help keep families together, keep our kids (young and old) in our homes and communities, and provide them with crucial services that will give them a chance at life.

Unfortunately, the State of Illinois pays for very little of that—although it pays enormous sums to separate families and support institutions. Currently, the State provides a small amount of in-home services to only 337 children with disabilities, out of more than 10,000 kids with autism and many more with other severe developmental disabilities. Only two states provide less money for in-home supports and integrated community settings. But only five states spend more on institutions.

Almost three years ago, we introduced legislation to create a funding source for autism families to access, which would be paid for by state and federal investment in a Medicaid waiver program. That work led to the creation of the Illinois Autism Task Force, which completed its report last year calling for, as its highest priority—can you guess?—an autism children’s waiver to directly support these families.

As you may know, this year we again introduced legislation to get the State to create this program, with three separate bills calling on the State to apply for a federal Medicaid waiver for children with autism and other developmental disabilities. After one bill passed the House and the others moved out of committee in late February, we met with Senate sponsors, Administration leaders and personnel, as well as several other disability groups.

At that meeting, the Administration agreed to write a children’s waiver for DD, including autism, although there was no budget commitment at that time, other than to obtain matching dollars for current expenditures. The waiver bills were therefore held in the Senate on extended deadline, where they can be resurrected during the November veto session if the Administration has not completed the waiver application by then. We have participated in several meetings held by the departments as an “ad hoc” waiver committee writing the children’s waiver application and renewing the adult DD waiver (yes, yet another task force). We have seen some (slow) progress toward our goal and are hopeful that a useful, accessible program will be in place next year for as many of our families as possible.

Yesterday, the Illinois House passed a resolution unanimously urging the administration to ensure that the waiver that is being written will cover at least 2000 children with autism and provide them with autism-specific services. The resolution (which is non-binding) was introduced by Rep. Lee Daniels and co-sponsored by Reps. Patti Bellock, Sandra Pihos, Rosemary Mulligan, and Karen May. It passed unanimously.

We will see if there is anything in the FY07 budget to provide this, probably by tomorrow.

Here is the resolution text:

HR1053
HOUSE RESOLUTION

WHEREAS, The Illinois State Board of Education has reported that today there are more than twice as many children in Illinois diagnosed with autism as there were only five years ago; and

WHEREAS, It is estimated that fewer than 1 in 10 children with autism receive the level and type of services recommended by the National Research Council; and

WHEREAS, Families of children with autism bear an enormous financial burden of providing needed services and healthcare; and

WHEREAS, Public Act 93-773 was signed into law in 2004 establishing the Autism Task Force, in order to study and assess service needs of persons with autism spectrum disorders ("ASD") in the State of Illinois; and

WHEREAS, Public Act 93-773 additionally required the Department of Human Services (DHS) and the Department of Public Aid to determine the availability of federal financial participation in the cost of developing a family support program, which would include medical assistance coverage for
children diagnosed with autism, including services to support persons with autism in their homes and communities that are not provided through local school systems, early intervention programs, or the medical assistance program under the Illinois Public Aid Code; and

WHEREAS, Public Act 93-773 required the departments to determine the feasibility of obtaining federal financial participation and stated that they "may apply for any applicable waiver under Section 1915(c) of the federal Social Security Act"; and

HR1053- 2 -LRB094 19988 DRJ 57432 r

WHEREAS, The Autism Task Force met for over 18 months and, on September 1, 2005, delivered a 30-page report which recommended that the Governor and State Legislature should give "the highest priority" to establishment of a children's Autism Waiver program in Illinois; and

WHEREAS, The Autism Task Force further recommended that, "with the support of the Governor and the Legislature, the Department of Healthcare and Family Services (HFS) and DHS should prepare and submit as soon as possible to the Federal Centers for Medicare and Medicaid Services an application for an Illinois Children's ASD Waiver"; and

WHEREAS, Committees of both houses of the General Assembly convened several subject matter hearings on autism in Fall 2005 in Chicago and Springfield, including hearings by the House Developmental Disabilities/Mental Illness Committee, the Senate Health and Human Services Committee, and the House Human Services Committee; and

WHEREAS, Many dozens of parents of children and adults with autism testified before these committees, attesting to the urgent need for services and financial support for families of children and adults with autism; and

WHEREAS, Illinois has no Medicaid waiver program for children with autism or any developmental disabilities; and

WHEREAS, A children's Medicaid waiver will provide Federal Match to the State through reimbursement by the Federal government for waiver services; therefore, be it

RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE
NINETY-FOURTH GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that we endorse the goal of supporting families of children with

HR1053- 3 -LRB094 19988 DRJ 57432 r

autism directly and providing consumer-directed services for
persons with autism; and be it further

RESOLVED, That we support the goal of establishing a Medicaid waiver or waivers to provide supports and services for families of children with autism; and be it further

RESOLVED, That we urge the Department of Healthcare and Family Services and the Department of Human Services to apply for a children's Medicaid waiver that includes a minimum of 2,000 children with autism and provides for these children to receive specialized autism services, including applied behavioral analysis and analogous habilitative methodologies, in addition to other waiver services and supports that will allow parents to keep their children with autism in their homes and with their families; and be it further

RESOLVED, That suitable copies of this resolution be delivered to the Director of Healthcare and Family Services and to the Secretary of Human Services.

Christopher M. Kennedy
Legislative Director, Autism Society of Illinois

Autistic children can’t wait for ‘good budget year’

by Christopher Kennedy and Carol Rolland

The State Journal-Register, Springfield, Illinois
published March 22, 2006: Op-Ed, page 9

Imagine for a moment that a devastating disease with no cure was attacking young children in hugely increasing numbers, causing them severe and permanent disability. What if there were proven ways of helping those affected by the disease, but only a lucky few could obtain it? And what if the number of these children doubled in only five years? Wouldn’t we do something to help the affected children and their families?

This scenario may sound like the polio epidemic of the 1940’s and 50’s, or malaria or AIDS in parts of Africa. But this is happening today right here in Illinois — with autism. And a family whose child has autism gets little help here.

Autism is a severe neurological disorder, in which unknown problems in the brains of young children prevent them from being able to communicate, behave appropriately, or interact with other people, often for life. Autism now affects one in every 166 children born today, a sharp rise from only 1 in 2,500 a decade ago. In Illinois, 2005 public school statistics show there are more than 8,293 children with autism, up from 3,662 in 2000 — an increase of over 125% in just five years.

Before the development of effective intervention methods, the prognosis for most of these children was grim, and most were condemned to spend their lives in institutions. Fortunately, the last few decades have produced promising treatments and scientifically proven intervention methods that can vastly improve the lives of individuals with autism. Study after study has shown that, given the right type and amount of early intervention, many of these people can live happily and functionally in their homes and in our communities. Hall of Fame quarterback Dan Marino’s son is a famous example of a child who has shed many of the most disabling characteristics of the disorder.

How is such success accomplished? The National Research Council has stated that, to reach these levels of improvement, children with autism must have 25 to 40 hours of direct intervention per week, most of it provided one-on-one with a specially trained therapist/teacher, with extensive parent involvement.

Of course, providing effective intervention is costly. Such programs can cost annually anywhere from $20,000 to $80,000 per child, and are not covered by insurance. In Illinois, the burden falls almost entirely on the families of these children. It is no mystery why fewer than 10% of children with autism are estimated to receive such services. Only the most motivated and resourceful parents are able to piece together an effective program.

Many states support their families through direct funding programs, so they can obtain effective treatment and keep their children in their homes. The investment pays off in many ways: children who reach their potential, families kept together, and parents able to return to work — not to mention the elimination of future institutional placements at a cost to the state of over $120,000 per person per year for decades.

Illinois willingly pays the maximum price to separate a family and put their disabled child in an institution, but does little to prevent institutionalization, even at a small fraction of the cost. While we spend among the highest levels on our institutions, only Mississippi and Arkansas spend less to keep the developmentally disabled in their homes and communities. As bad as things are for children, the system in Illinois becomes much worse when they reach age 21. And the number of these children just doubled.

In a series of legislative subject matter hearings held in Chicago and Springfield this past fall by Representative Lee Daniels and Senator Susan Garrett, hundreds of parents of children and adults with autism testified to the lack of supports in Illinois. Many are going into debt, going on Public Aid, sacrificing careers and lives, just to give their child with autism needed therapies. In September 2005, the Autism Task Force signed into law by Governor Blagojevich two years ago recommended as its highest priority a program to provide direct funding for families to use for therapies. Despite the increased numbers and growing awareness, however, there is not one additional dollar in this year’s proposed budget for families of children with autism to use to keep their families together.

This is a crisis that can’t wait for a “good budget year.” Families affected by autism and other developmental disabilities need the state’s help today, so they can give their children a fair chance at life. This help must include direct state funding for them to use in their homes, vastly improved special education programs, and increased access to health insurance. Without it, fewer and fewer families suffering under the strain will be able to continue providing care, and their children will pay the consequences—as will Illinois.

Christopher M. Kennedy is an attorney and father of three, including one child with autism and epilepsy. He is also the legislative director of the Autism Society of Illinois.

Carol Rolland, PhD, is a licensed developmental psychologist and Director, Pediatric Developmental Services, Advocate Illinois Masonic Medical Center. She directs a parent focused intervention program for children with autism.

PUNS - Prioritization of Unmet Need for Services

Three years ago, the Illinois General Assembly created a cross-disability database or waiting list for services for people with disabilities in Illinois. The State now collects information from families using a survey tool called the Prioritization of Urgency of Need for Service (PUNS). The PUNS is for ANYONE or the family of anyone anticipating the need for services in the next five years (which is just about all persons with autism).

But: The PUNS database still only contains 376 people with a primary diagnosis of autism, and 612 with a secondary diagnosis. (DHS data: 2/16/06) Yet, we know that there are at least 8,393 children in public schools with autism, so why aren’t more people listed on the PUNS? Because we haven’t gotten our children and adults with autism listed.

We need to get on that database now. PUNS data will be the tool the state uses as it decides who will receive services on an individual basis, and it will be used to determine what new programs and services the state will develop.

For families of minor children the need may mean respite or after school care. It may mean access to therapies or equipment or home modifications. Do not think about available services or specific programs; think about what your need is. Think about what you haven’t been able to get, either because it doesn’t exist or because it is not available to you. If you do not anticipate having a need in the next five years, the PAS agent is not supposed to complete the survey! So be thoughtful about your needs!

This is your chance! This is the time to think critically about what our loved one with a disability needs to be successful, either in your home or his home in the community. Your willingness to complete the survey will allow us to advocate for family support programs! Currently just over 10,000 individuals have completed the survey. Demographics lead us to believe that more than 20,000 people should eventually be included in the database.

HOW TO GET LISTED ON THE PUNS

Call your local Pre-Admission Screening (PAS) Agency (or “ISC Agency”). They must fill out the survey for you with your input. You can identify your PAS agency on the web at http://www.dhs.state.il.us/OfficeLocator or see the list at the bottom of this document.

Your PAS agency representative will make an appointment to meet with you, either in your home or in their office. We are also working with PAS agencies to set up convenient “PUNS registration events” on weekends or at night. The process of filling out the form involves a face-to face conversation between the PAS agent and the person with a disability, a family member or a guardian, and any other person the individual with a disability wishes to include. The survey represents the combined perception of all these parties.

Some people report being told that they don’t qualify or that they’re not eligible. Others report being told that if they don’t have a need within five years that they don’t need to complete the PUNS. Everybody with a developmental disability who anticipates a need within the next five years should complete the PUNS form. Remember: autism is a condition that must be counted, so if your loved one has autism and another condition(s), list all of them. Think critically about your needs. Even if it is “just” respite or “just” after school supports, or “just” transportation. If you are not satisfied with the survey, feel it has been filled out inadequately or if you feel you have been inaccurately turned down in your request to fill out the survey, you should contact your DHS Network Facilitator at 217-524-2521 or 312-814-2735.

The PUNS survey must be updated on an annual basis. After twelve months, a notice should be issued to all parties of the need to update the form. If not updated, an additional warning will be submitted of the intent to close the PUNS record.

Also, please remember that inclusion in the database does not assume eligibility for services or guarantee the receipt of services. But, if you are not on the PUNS, you are guaranteed NOT to receive state services. So get on there today.

Just what are Pre-Admission Screening agencies and what do they do?

Pre-Admission Screening (PAS) is really a service that is provided by Independent Service Coordination (ISC) Agencies. Eighteen such agencies are located around the state for easy access. You do not get to choose which agency you want to use. You must use the one in your geographic area. Pre-Admission Screening is a process through which eligibility for certain state-funded services is determined. Independent Service Coordination Agencies can help connect individuals with disabilities to services for which they have been determined eligible. They can also connect you to other helpful services. Independent Service Coordination Agencies are the backbone of the service system as they provide choices and options to people and their families as they access the maze of services.

Service Coordination Agencies (aka “PAS agencies”)

Find which is yours by typing in your county and “Developmental Disabilities” here: http://www.dhs.state.il.us/OfficeLocator
 

Call them TODAY and get listed.

Who knows, you may even find that you are eligible for existing services. Even if you are not, the State needs to know that we are out there and in need of help.

Adapted from Family Support Network

Funding for Families — Add $5 Million

1. Expand funding to DHS’ 72D program
   - DD grant for “children’s in-home services”
2. Currently serves only 337 children ($4.3m)
3. Will cover hundreds of children in critical need of therapies
4. Covers children with ALL disabilities
5. Help families keep their children in their homes
6. Flexible services give families options for support, care
7. Will be matched by federal Medicaid waiver
8. Services are highest priority, per Autism Task Force report
   
   
   Christopher M. Kennedy
   Legislative Director

Christopher M. Kennedy is an attorney and father of three, including one child with autism and epilepsy. He is also the legislative director of the Autism Society of Illinois.

A Letter to the Govenor

May 2, 2006

VIA FACSIMILE 217-524-4049

The Honorable Rod R. Blagojevich
Governor of Illinois
Room 207, Statehouse
Springfield, IL 62706
 Re: Autism bills

Dear Governor Blagojevich:

On behalf of thousands of families in Illinois, the Autism Society of Illinois respectfully requests that you support budget initiatives and sign into law three bills that will improve the lives of thousands of individuals with autism and their families. Autism has been described by the Centers for Disease Control and Prevention as a national public health crisis.

The number of children in Illinois identified with autism has increased 125% in the last 5 years. The toll on families, schools and service providers has been immense. This past fall, at five legislative hearings held in Springfield and Chicago, hundreds of families of children and adults with autism testified as to the lack of services in this state. While only five states spend more money to separate families by sending the disabled to institutions, only Mississippi and Arkansas spend less to keep families together by providing in-home supports and integrated community services.

We are grateful for your agreement to apply for federal matching funds through a Medicaid waiver for children with autism and other developmental disabilities. This will mark the first time in Illinois history that such a program has existed. However, no additional families will be served yet. We hope that you will advocate for funding to be directed to families, specifically by adding $5 million for the Department of Human Services’ 72D supports program, the only program in the state to help families keep their disabled children. Sadly, only 337 children receive this help, out of many thousands of desperate families.

Your commitment to healthcare for ALL children gives us and our families hope. Please help address the autism crisis immediately by:

1. allocating an additional $5 million for the Department of Human Services’ 72D program, which provides critical in-home supports to our families. This amount would more than double this program and all funds will be matched by the federal government; and
2. allocating $100,000 for the ISBE’s only autism teacher training program, the Illinois Autism Training and Technical Assistance Project, which currently receives no state funding.

In addition to budgeting these small sums, you can make a difference in the lives of thousands of our families by signing the following three bills into law:

House Bill 4125 (Flowers-Daniels-Bellock-Jenisch-D’Amico / Garrett-Millner-Link-Ronen-Cronin) provides for the addition of 20 hours per year of speech therapy for children with autism who are covered under a large group health insurance policy or HMO. This addition would add limited, but crucial, benefits for children who are literally unable to speak for themselves. If these kids are given a chance, 90% of them can learn how to use spoken language properly; without help, however, the prospects of these children ever leading independent lives become quite grim. Please give these children a chance by signing this bill into law. HB 4125 passed the House unanimously 113-0 and passed the Senate 44-11.

House Bill 4202 (Lang-Bellock-Flowers-Yarbrough-Graham / E.Jones-Collins-Hunter-Crotty-Martinez) extends the Mental Health Insurance Parity law, increasing coverage for certain habilitative therapies from 35 hours per year to 60. Thousands of our families in Illinois depend on the coverage provided through mental health parity, as children with autism often need hundreds of hours of such therapies every year. HB 4202 passed the House 82-31 and passed the Senate 43-13.

House Bill 4987 (Brauer-Froehlich-Franks-Eddy-Mitchell / Bomke-Crotty-Halvorson-Collins-Radogno) allows for local school districts to hire certified behavioral analysts, most of whom specialize in working with children with autism. Currently, these services are not reimbursable and their national certification is not recognized in Illinois. Behavioral therapies for autism are endorsed by the U.S. Surgeon General, the National Research Council, and the National Academies of Science, because this intensive therapy has been proven to be highly effective for children with autism. Further, Illinois has two graduate programs that cannot place their students in jobs in Illinois: SIU-Carbondale and the Chicago School of Professional Psychology. Sadly, these professionals leave Illinois to practice in other states because we do not recognize their unique and specialized skills for children and adults. HB 4987 passed both houses unanimously.

Thank you for your support of the autism community. If you or your staff has any questions about these initiatives, please feel free to contact me at any time.

Respectfully,
Christopher M. Kennedy
Legislative Director
Autism Society of Illinois

cc: Speaker Michael Madigan 217-524-1794
President Emil Jones 217-782-3242
Joseph Handley 217-782-2033