CCDI thanks the Disability Rights Education and Defense Fund (DREDF) for the following analysis of the IDEA Reauthorization.

The Individuals with Disabilities Education Act (IDEA) has been re-authorized. The House of Representatives passed the bill with a vote of 397 - 3 on November 19, 2004 and the Senate agreed to it by unanimous consent the same day.

WHAT DID WE LOSE AND WHAT DID WE GAIN?

The bill we ended up with looks very much like the Senate bill, with a lot of refinements that occurred over the last months and weeks. DREDF plans to do a complete analysis of the law that is emerging and what it means for our families, supporters and children, as well as a post-mortem of the process, in the fullness of time. But we can say now that the voices of parents and advocates were heard loud and clear, that we DID make a difference in the outcome, and that, given the political and strategic circumstances and the situation on the Hill during this reauthorization process, our hard work and dedication paid off in getting our children the best possible bill. Is it perfect or ideal? No. Is it fully funded? No. But we need to keep fighting and not be defeated by any sense of despair or failure.

We lost some protections. It remains to be seen how "measurable annual goals" and quarterly progress reports will work to replace short-term objectives and benchmarks; up to 15 states may be granted an opportunity to pilot optional three-year IEPs; students who violate school codes will have to remain in an interim placement pending an appeal of the manifestation determination (a hearing must occur within 20 days).

Yet we also held back ferocious assaults on discipline provisions and due process protections, and we prevailed in several key areas, from an increase in the number of certified special education teachers to expanded access to assistive technology to sanctions on states that do not comply with the law. And we retained continued services for students moved to alternate placements, attorney fee reimbursements for parents who prevail in due process hearings, and functional behavior assessments and manifestation determinations. There are also key improvements in this bill: provisions for alternate assessments, positive behavioral supports, school to life transitions, assistive technology and personnel standards.

DREDF wrote in a recent update to advocates that emerging with a bill that more closely resembled the Senate's version than the House's would be like "dodging a bullet." With much hard work and perseverance that bullet was dodged and a great deal of the credit for what was achieved goes to Connie Garner, Senator Kennedy's Disability Policy Advisor and chief staffer on the HELP Committee for IDEA. A parent herself, Connie Garner is a true champion of children's rights, and the parent and advocacy communities are indebted to her. We were happy to hear Senator Kennedy acknowledge her work both in his conference speech and on the Senate floor.

WHAT HAPPENS NOW?

Everyone's efforts resulted in the bill being better than we feared, but not as good as we would have liked. The first thing to say is that the voices of parents were raised, we were heard and we made a difference.

The principals of IDEA are preserved. The extremely negative provisions in the House bill have been eliminated, and parents' rights remain largely intact. The final bill does contain a few changes that are weaker or that can be interpreted to be weaker than current law. Thus it is important that parents and advocates have the best strategies to deal with these new provisions. Now is the time to disseminate accurate information about the changes, develop advocacy strategies and ensure that parents of IDEA students are trained in the new 2004 provisions.

Here are some examples:
1. Advocates fought against the early resolution meeting now set forth in the bill on the grounds that parents may feel coerced to go to a meeting after the filing of a complaint and be intimidated into signing a legally binding document under duress. This concern is very real. Parents need to know that they can opt out of this meeting if they choose to go to mediation. Parents must know that they do not have to sign the document in the meeting, but should take it home to consider.
2. The new manifestation determination does not specify that a manifestation will be found if the child's disability impairs the child's ability to understand or control the behavior or if the IEP has not been appropriately implemented. Under the new language, a manifestation will be found any time the conduct was caused by OR had a direct and substantial relationship to the child's disability or the failure to implement the IEP. We should be arguing that this standard is at least as strong as current law. If a child's disability impairs the child's ability to understand or control his or her behavior, it necessarily follows that the conduct was substantially related to the disability.
3. The attorney fees provision has gotten a lot of attention. Parents should know that the reauthorization did no more than incorporate civil rights attorney fees law that has been established since 1978!

In other words, DON'T GIVE IN TOO EASILY. We can work with the new law! Our children have not lost their rights.




It is time once again for CCDI members and Regional Directors to start planning regional meetings. Regional meetings are facilitated by the Regional Director and are designed to gain input from all chapter members and at-large members located across the region. As many of our members already know, CCDI has divided the state into 11 separate regions. If you are unsure which region you live in or who your Regional Director is, contact the state office at (217) 522-7016 (V/TTY).

Regional meetings provide CCDI members a number of different opportunities which include the election of a new Regional Director. CCDI's Executive Board will be elected at the Annual Meeting on June 8, 2005, but Regional Director elections will take place in the months prior to the Annual Meeting.

To ensure that all CCDI members have a say in who is elected as their Regional Director, each chapter in a region is allowed to cast five votes and all of the region's at-large members can collectively cast five votes for the candidate they choose. It is often impossible for every chapter and at-large member to attend the meeting, so it is recommended that chapters send at least one or two delegates to cast their chapter's votes. Because at-large members may not have had an opportunity to meet before the regional meeting, time may need to be set aside for those members to caucus and choose a candidate.

Keep in mind, regional meetings aren't just about electing a new Regional Director. Regional meetings provide an excellent opportunity for chapters to exchange ideas, discuss solutions to problems and talk about the successes they have had in their areas. It is also a good time to offer chapter trainings and workshops on a variety of topics.

Chapters and at-large members will be notified of their regional meeting date and location as soon as the state office is provided with that information. If you require accommodations such as a sign language interpreter or alternate formats of meeting materials, make your request known to your Regional Director as soon as possible so they can assist in securing a local sponsor. For more information or if you have questions about your regional meeting, contact your Regional Director or the CCDI state office at (217) 522-7016 (V/TTY).

By CCDI Executive Director Vickie Wilson

The following is part 2 of Executive Director Wilson’s series of articles on grassroots organizing. Thanks to the Midwest Academy for the following excerpt from their training manual.

Direct Action Organizing
Lesson 2

There are many different kinds of campaigns. An election campaign, which might happen to be fought on issues, an education campaign to raise public awareness, a fundraising campaign to support a cause, or a service delivery campaign such as providing the homeless with shelter.

What we are interested in today is an issue campaign. An issue campaign is waged to win a victory on a particular issue. It ends in a specific victory where people get something they didn't have before or someone with power agrees to do something that he or she previously refused to do. In organizing the word "issue" means a specific solution to a problem (what is wrong). An issue campaign has a beginning, middle, and an end. It is seldom a one-shot event, nor is it simply a series of events linked by a common theme. It is a method of building power and building organization.

A real-life issue campaign doesn't start out with high-pressure activities. It starts out with reasonable people asking nicely for things to which they feel entitled. Efforts are made to persuade on the merits, facts, and morality of the issue. After people are refused things, for which they shouldn't have had to ask in the first place, that power must be applied.

Issue campaigns last for various lengths of time. You may want to start with a short campaign and choose a relatively "fixed fight" for your first issue. For instance, information that you know you are entitled to, or something to be done that probably would have been done anyway but at a later date. This will provide your group with a visible win, quick victory that build up the members' confidence in their ability and also gain public recognition.

Following are a series of steps generally followed to develop an issue campaign.

1. Choose the Issue and Develop a Strategy. Remember the issue is the solution (what you want) that addresses the problem (what is wrong). The strategy is the overall plan for winning the issue.

2. Open Communication with the Target. The target is the person (decision maker) who has the power to give you what you want. The target is never an institution such as government, corporation, or legislature.

3. Announce the Campaign. Hold a media event, release a study or simply tell your stories.

4. Begin Outreach Activities. Enlist other organizations, circulate petitions, and send speakers to other groups. This will help establish legitimacy and bring in more allies and volunteers.

5. Stage Direct Encounters with Decision Makers. At this point you want to evaluate what power you have over the decision maker. Once power is determined set up a face-to-face meeting with either the decision maker or a secondary target that has more power than you over the decision maker. For example, you may ultimately want to influence the Mayor but your group has more power over your elected Alderman who in turn has more power over the Mayor.

6. Build the Organization. Every planning session for an event should include a discussion of how to use the event to build the group. Planning to build your group must be specific. How many new people will be recruited, where, how, and by whom? What time should the event take place? How will new people be integrated into the group? How will all the members be told what happened? Perhaps a telephone tree? Each event should be larger than the last one, if not then you are not building your group. Plan leadership training into each event, this means practice beforehand and evaluate afterward.

7. Win or Regroup. After a series of successful events, your group takes on the main decision maker. Often a victory is won or a compromise is reached. If not, you must be prepared to escalate your tactics. This may mean large demonstrations and picketing. Or you may decide that you have reached the limit of your strength and that you will have to lower your demands and accept less.

At each of these stages, your group is being strengthened; leadership is growing and gaining experience, skill, and media recognition. The membership is growing and money is being raised.

Next month I will cover measuring power you actually have, illusions about power and tricks the other side uses.


Elaine Wilson, advocate and plaintiff in the landmark Olmstead vs. L.C & E.W. Supreme Court Case, died in the early morning of December 5, 2004 at Grady Memorial Hospital in Atlanta, Georgia of heart and lung problems. She was 53.

While most disability rights advocates are well aware of the impact the Olmstead case has had in upholding the rights of people with disabilities, the vast majority of us know very little about Elaine Wilson. In fact, most of us only knew of her by her initials, E.W.

Ms. Wilson was born in 1950's Georgia to mother Jackie Edelstein. As an infant Ms. Wilson suffered a 107-degree fever that left her with lifelong disabilities. At age 15, Ms. Wilson's mother kept her at home after she was no longer able to attend school. Without appropriate community supports, Wilson’s mother was faced with a difficult decision. Thus, Ms. Wilson began her journey through Georgia's mental health system.

Over the years Ms. Wilson would be institutionalized 36 times in addition to becoming homeless on several occasions. Years of continued use of different psychotropic medications prescribed to treat her mental illness caused failure of her kidneys.

In the late 1990's Ms. Wilson and Lois Curtis took on the state of Georgia in what would become the historic Olmstead vs. L.C. & E.W. case. They were both seeking release from Georgia Regional Hospital. The Atlanta Legal Aid Society represented Ms. Wilson and Ms. Curtis against Georgia Department of Human Resources Commissioner Tommy Olmstead. The case eventually made its way to the United States Supreme Court.

Wilson and Curtis' victory in the Olmstead decision was an incredible show of support for the ADA, but the personal impact the case had on their lives was just as profound.

After the Olmstead decision Ms. Wilson moved into her own home with caretakers where a friend said she "blossomed." Previously a distrustful and combative person, Ms. Wilson learned to cook, attended church regularly, was an avid coupon clipper and spent hours picking out greeting cards for friends and loved ones.

Ms. Wilson worked to improve her public speaking abilities and developed a Power Point presentation about her life. Doing advocacy work on behalf of others still trapped in institutions became her passion.

A memorial service was held December 12, 2004 in Marietta, Georgia. In lieu of flowers, friends and fellow advocates are asked to send tax-deductible donations to Circle of Support, Inc. P.O. Box 373499, Decatur, GA 30037, (770) 987-7355.

Portions of this article are from Derrick Henry’s December 10, 2004 article in The Atlanta Journal-Constitution.


In October Illinois Governor Rod Blagojevich partnered with Wisconsin Governor Jim Doyle to announce that the new I-SaveRx Prescription Drug Program was officially open for business. The I-SaveRx program is the first of its kind in the nation and allows citizens of both Illinois and Wisconsin to purchase lower cost prescription drugs from Canada and Europe. Approximately 18 million people live in the two states and will have access to the program.

The I-SaveRx program has setup a network of 45 pharmacies and wholesalers in Canada, the United Kingdom and Ireland that will supply customer demand. The cost of prescription drugs in those countries is on an average 25-50 percent lower than in the United States. For example, a three-month supply of 100 mg doses of Celebrex , a drug used to treat arthritis, costs $213 in the U.S., but only $101 in Ireland, $102 in the U.K. and $79 in Canada. Each order is subject to a $15 shipping charge.

Customers of the program can contact the I-SaveRx clearinghouse administered by CanaRx which provides one-stop shopping. Lists of medications and pricing information are available for comparison by calling the toll free line (866) ISAVE33 or by visiting the website at www.I-SaveRx.net.

By: Phil Milsk, Governmental Affairs Consultant

2005 will be a very busy year for the Coalition. We anticipate the introduction of several thousand bills in the Illinois General Assembly and many will affect persons with disabilities in Illinois. In addition, proposed Social Security and Medicaid reforms, among other things, will require that we pay close attention to what is going on in Washington next year.

CCDI’s Executive Director Vickie Wilson and I have identified a number of important areas that will require involvement by the Coalition. First, Illinois has hardly scratched the surface when it comes to full implementation of the Olmstead decision. Therefore, we will be devoting considerable time and effort to the development of a comprehensive Olmstead plan under the Disabilities Services Act of 2003. The Act calls for the appointment of a new Advisory Committee and many of those members have already been named by the Governor. In addition, we will be working in collaboration with INCIL and other advocacy groups on one or more proposals that will more creatively use Medicaid and other funding sources to facilitate the integration of persons with disabilities into the community and give them the ability to choose the services they want.

Another key area is the implementation of the new Individuals with Disabilities Education Improvement Act of 2004, just recently signed into law by the President. The Coalition will be fully involved in advocating for the rights of students with disabilities and parents as the State moves forward with new legislation, rules and policies to implement the revised federal law. As a member of the State Advisory Council, Vickie will have a unique opportunity to influence the State Board of Education’s policies under IDEIA.

Proposed changes in the eligibility priorities for vocational rehabilitation will require the Coalition to work closely with the Division of Rehabilitation Services and other advocates to shape the new policies.

In the area of housing, the Coalition is committed to working with other housing advocates to move a bill to passage that prohibits discrimination in housing based on the renter’s source of income. House Bill 4439, last year’s legislation, will probably be reintroduced in 2005 as a new bill, perhaps with some modifications. In addition, we would strongly endorse and work for the passage of a bill that the Arc of Illinois is considering that would require new CILAs (created by either new construction or the expansion of existing units) to provide a private bedroom for each resident and establish a 4 resident limit for each building.

A recommendation that came out of the Arc’s Employment Summit in October, 2004, is that Illinois create a certification for “transition specialist” within the State’s school personnel certification system. These individuals would receive appropriate instruction in colleges and universities and serve as transition planning and service coordinators in the high schools. If such legislation is introduced, the Coalition would strongly support it and work for its passage.

Finally, don’t forget that the 93rd General Assembly has not finished its work yet. Pending in the House is HB 757, which, among other things, includes language that would require high schools to allow students with IEPs to participate in graduation ceremonies with their classmates even though their IEPs call for the continuation of educational, vocational, transition and/or related services beyond 4 years of high school. CCDI fully supports this bill, which is called “Brittany’s Law” after a young woman who was denied access to her class commencement ceremony last June, but finally allowed to participate thanks to the intervention of State Sen. Christine Radogno and Attorney General Lisa Madigan. Sen. Radogno is the lead sponsor of HB 757.

The agenda proposed in this article is subject to the approval of CCDI’s Board of Directors.

By Marlin "Mars" Thomas

In Theaters Now!
Lemony Snicket’s A Series of Unfortunate Disability Clichés

Lemony Snicket's A Series of Unfortunate Events (2004)
Staring: Jim Carrey, Liam Aiken, Emily Browning, Kara/Shelby Hoffman
Director: Brad Silberling
Length: 1 hr. 48 mins.

Kids' movies are happy most of the time. They project a happiness that makes you laugh and smile. They forget to tell the tragedy of parents getting killed, a best friend dying or incredibly horrible people. This film lets you know up front that some bad things are coming. Lemony Snicket's A Series of Unfortunate Events is a dark comedy about 3 kids and the very evil Count Olaf. He wants the kids' immense inheritance from the death of their parents. The movie focuses on these children and their talents as they try to escape the clutches of the evil Count.

I really enjoyed this movie and would have loved the story as a child. It is full of adventure and suspense. It even made me jump. But its the kids that really make this film for me. They acted well and made me believe that they were true siblings. Jim Carrey was at home with his role as Count Olaf. He was funny, yet slimy and menacing. He made you despise Count Olaf. There were also some great cast members that I did not expect, such as Meryl Streep, Dustin Hoffman, and Cedric the Entertainer! I was impressed with how good the scenery was. It was not a pretty world, but the characters shine through. As much as I enjoyed this film, I wish that people with disabilities would have been portrayed with a little more depth.

Many kids' films are still guilty of perpetuating the harmful stereotypes of people with disabilities. This movie is no exception. In one scene, Count Olaf is disguised as a character called Captain Sham and he is "peg-legged." He calls his leg "gimpy" and acts rather weak. Of course, Count Olaf is meant to be a horrible man, but it irks me to see this cliché repeatedly. One of Count Olaf's troop of actors is a man with sharp hooks for hands. He is clumsy and is seen as rather stupid. His hooks get in the way and he rips several things. The character of Aunt Josephine (Streep) was someone that they kept using the word "crazy" to describe. They made her look ridiculous and highly irrational. Again, the writer overly dramatizes paranoia and the way people react to it. I would love to see a movie that shows all sides of a character with a disability; a movie that doesn't use disability to scare the audience or evoke pity.

Overall, I liked the message of the film. In the darkest of times, a light can still shine. It may sound corny and unoriginal, but this movie makes it clear and makes you believe it. I hope to check out the books that Lemony Snicket's A Series of Unfortunate Events was based. I hope the disability portion of the books is less offensive. Kids over 7 should see this movie and possibly discuss it. If adults can handle Jim Carrey, it is worth seeing despite all the clichés.

Quality: 3 stars
Disability: 1 wheelchair


In October of 2004 the Empowered Fe Fes, a peer group who explore women's issues within the context of disability, premiered the film Beyond Disability: The Fe Fe Stories. The 25-minute film opens the door into the lives of young women with disabilities and is written, directed and produced by the Fe Fes themselves. The Empowered Fe Fes are based at Metro Chicago's Center for Independent Living Access Chicago. The term "Fe Fe" is a playful twist on the word female.

"The film takes a straightforward picture of disability," said Dawn Ramsey, a member of the Empowered Fe Fes and a key participate in the production of Beyond Disability. "Society presents disability as either heroic or pitiful . . . we want to break down these stereotypes to present disability as a culture that is confronted by attitudinal and physical barriers. Challenging these barriers creates a disability experience that we can identify with and be proud of."

To make the film, the Fe Fes partnered with Beyondmedia, a nonprofit organization with a mission to collaborate with under-served and under-represented women, youth and communities to tell their stories and organize for social justice through the creation and distribution of alternative media arts.

"Young people are developing a sense of disability pride and disability culture," said Susan Nussbaum, a co-founder of the Fe Fes. "Working with the Fe Fes, I see young women go through the same experience that we as organizers went through 20 years ago during the early stages of the disability rights movement. Beyond Disability shares that experience with disabled people and non-disabled people."

The Fe Fes employ a variety of techniques throughout the film to convey their message. Some of the most effective scenes include the Fe Fes interviewing random strangers on a busy Chicago street. They ask basic questions such as "Should a person with a disability have a child," and they bravely question young men about whether or not they would date a woman with a disability. These basic questions proved to be very difficult and uncomfortable for the average person on the street to answer.

For more information about the film Beyond Disability: The Fe Fe Stories, contact Access Living at (312) 253-7000 (voice) or (312) 253-7002 (TTY).

By Avery Ray, CCDI Logan County Chapter Member and Catalyst Proofreader

As I write this, I must remind myself of all the blessings I have in my life. Yes, this disability has changed my lifestyle profoundly. As a semi-official sun worshipper, it seems to be an extreme punishment for some unknown crime, buried deep in my past. Being outside at all has become a form of torture for me. Instead of spending many hours fishing on the nearby lake, I have given up fishing altogether. I have to limit any gardening or mowing to two hours, tops. Even a cloudy day can become quite an ordeal. Flashing lights, florescent lighting (such as in stores), the wonderful strobe affect of sunlight through the trees, as I drive along; these are but a few of the triggers which will set me off.

As you may have guessed, I have photosensitive seizures. Although tested as to the cause, the experts have no clue what is going on, let alone how to treat my problem. So, I endure each day, avoiding as many triggers as possible.

This is what the experts have to say about my condition:

What is Photosensitive Epilepsy?
“Epileptic seizures can sometimes be triggered by certain frequencies of flashing or flickering lights, or by certain geometric shapes or patterns. This is a fairly rare condition and is known as photosensitive epilepsy. As epilepsy itself is a common condition it is likely that seizures will sometimes occur by chance while someone is playing electronic games or watching television. For some people this may be a coincidence - they may have had the seizure regardless of what they were doing at the time - and this does not necessarily mean these activities have triggered the seizures. Further investigation may help to determine the cause of the seizures.
(© The National Society for Epilepsy September 2002)

As I typed the above statement, I realized just how long I have been dealing with this problem. Many of these triggers have bothered me since early childhood. Since very little was known at that time, and with my parents being poor farmers, I was never taken to a doctor to be diagnosed.

Instead, while fighting an oncoming seizure, I was thought to be lazy and was punished accordingly. My parents never understood what an aura was, or how to help me deal with the inevitable results. As a pre-teen, I had many days lost to memory, due to what is known as absence seizures. I didn't have my first gran mal seizure until the age of fifty.

Unfortunately, this form of epilepsy is relatively rare. In the general population, roughly one in two hundred will have epilepsy. From that group, only 3-5% will have photosensitive seizures. This type is usually seen in children and adolescents, and is less common in adults. This fact lead my neurologist to label me as being depressed, and tried to treat me with antidepressants and a referral to a psychiatrist. The psychiatrist, in turn, informed me, her field did not consider photosensitive seizures as being true seizures.

After a year's battle, I was finally assigned to a new neurologist who not only believed in this type, but agreed this was the diagnosis in my case. He also stated that we may never find the cause or a cure. So, after a year of treatment with two different medications, I am still in the same boat.

The following is a list of common triggers. This is by no means complete or the same for every person with photosensitive seizures. Common triggers for people with photosensitive epilepsy include:

• Watching television, playing video games or looking at other computer graphics
• Having a faulty television or other light source that flickers slowly
• Strobe lights
• Sunlight coming through a line of trees
• Sunlight on water
• Looking out of the window on a train
• Looking at a moving escalator
• It is rare for seizures to be triggered by watching films in a cinema or by hand held miniature screens, however, some people are sensitive to various geometric shapes or patterns, such as stripes or checks

A number of factors which contribute to photosensitivity are:

• The frequency (flashes per second) of the stimulus (trigger)
• The intensity (brightness) of the stimulus
• The amount of the person's field of view that is exposed to the stimulus - the more field of view exposed (e.g. viewing larger television screens), increases the chance of triggering a seizure
• Whether the person's eyes are open, closed or blinking
• Background illumination - for example the flickering from a fluorescent tube light, thus it is often better to use an ordinary light

People with photosensitive epilepsy may also have seizures without flashing lights, although there are some people who only have seizures due to this trigger.
(© The National Society for Epilepsy September 2002)

Each time I go outside, I risk everything from passing out as soon as I sit down, to full-blown, gran mal seizures. I never know how much exposure to the light will cause me problems. I spend many hours in my office, which I keep relatively dark.

The good news is, the computer screen does not seem to bother me. Of course, when on line, I have to avoid flashing ads and certain colored fonts. Reds, yellows and bright blues can send me into gran mal seizures. While on instant messenger I pray no one sends a bright or flashing emoticon (graphic). A friend once sent a simple, yellow light bulb. My entire body went into seizures, and it took me the rest of the day to fully recover.

In spite of all this, I manage, and co-manage several on-line support groups for people with disabilities. This is the blessing part of my situation. If not for this and my many other life changing injuries, I would not have met this wonderful group of people. Each person has their own story, but we all have one thing in common, we all adapt to our situations and do our best to help others.

Alone, we might fail, but together we can overcome whatever life hands us. Knowing them, and so many other people with disabilities, has enriched my life beyond all measure. My hope is that this will inspire others to keep trying!

By Eric Guidish, Illinois Assistive Technology Program Telework Loan Coordinator

Do you need funds to work from home? Or do you need funds to begin, maintain, or upgrade your home-based business? If yes, the Telework Loan Program offered by the Illinois Assistive Technology Program may be your answer. The Telework Loan Program offers cash loans to qualified Illinois residents with disabilities who are 18 years or older to purchase almost anything, including home modifications, for home-based employment. If you qualify, you could borrow as little as $500 to as much as $40,000. Your interest rate would be 3.5%, which is lower than almost any bank's, and you could choose an extended term of up to 20 years for home modifications. Longer terms mean lower monthly payments.

A Telework Loan may be used for, but are not limited to, the following:

• Computers, printer, and related peripherals
• Software
• Fax machines
• Scanners
• Office machines (e.g., calculators)
• Telecommunications devices and system installation charges (e.g., telephone, DSL, high speed and Internet hookup fees)
• Office furniture
• Home modifications for telework
• Motor vehicles
• Assistive technology devices for telework

Working from home is a great opportunity for many people with disabilities, especially those living in rural areas. In fact, statistics shows that almost twice as many people with disabilities choose self-employment as compared to people without disabilities (14% versus 8%) and their success rate is considerably higher than the national average. Although Illinois does not have the statistics to show the percentage of businesses that are owned by people with disabilities that are still in operation after one year, our neighboring state Iowa reports an 84% success rate. They attribute many of our traits that make it possible, such as creative problem solving, ability to adapt, grace under fire, persistence, willingness to ask for help, and resourcefulness.

Here are some examples of loan requests we and other states have reviewed.

An employee with a visual impairment working at a Center for Independent Living applied. She applied for a loan to purchase a computer with special software that would accommodate her disability so that she could work from home several days a week.

We have reviewed applications from many entrepreneurs with disabilities. For example, one entrepreneur with a mobility impairment applied for a number of items (a computer, special software, printer, and desk) to begin a home-based medical transcription business that contracts with several hospitals. Another entrepreneur with a mobility impairment applied for farm equipment to farm, and another for a used truck to do over the road trucking.

We know of an entrepreneur with a head injury who applied for a used cargo van to begin his own flea market business. One entrepreneur with mental illness applied for a vehicle to do in home haircutting service while another applied for a home modification to do photography.

Two more entrepreneurs with hearing impairments applied, one to purchase a table saw and home modification to begin a home-based wood working shop and the other, who already had a small shop at home fixing watches, to purchase a new van to deliver his merchandise.

As you can imagine, the opportunities are endless. So if you need a small loan to work from home or to begin, maintain, or upgrade your home-based business, the Illinois Assistive Technology Program may be able to assist you through our Telework Loan Program. Please give me a call or send me an e-mail for more information. You can reach me at our toll free number (800) 852-5110 or eguidish@iltech.org.

Happy New Year!

By: Dawn Smith, Advocacy Coordinator

Central Illinois Valley

This month I met with Teresa Temborius, Henry Slater and Bill Galindo, all three officers of the Central Illinois Valley Chapter. Our meeting was held at Teresa’s house and I provided officer training which each was very receptive to. Thanks to Teresa for providing us with a fantastic lunch.

The three officers discussed their plans on outreach to their community with education as well as identifying persons who would benefit from getting involved in becoming members of the Coalition. Each of the members discussed their point of view in regards to living in the community with a disability and they all agreed that outreach would be highly beneficial.

While eating lunch, the group had a discussion about diets and exercise for people with quadriplegia. Is there a resource out there for persons with spinal cord injuries to keep at a healthy weight without eating very tiny portions? Diet and exercise is of course good for everyone, but is there a specific program designed for persons with spinal cord injuries? This is a topic that would make a great Catalyst article so if any of you out there have any suggestions don’t hesitate to contact us at (217) 522-7016 (V/TTY) or by e-mail at catalyst@ccdionline.org.

Thank you Theresa for your hospitality and insightfulness. Good luck with your efforts on behalf of your chapter and community.

Greater Peoria Area

I was fortunate to schedule two trainings on the same day. After officer training with the Central Illinois Valley Chapter I was able to provide training for the Greater Peoria Area Chapter as well. Both officers as well as other chapter members participated. Questions regarding the formality of a chapter’s structure were a big part of the training. In particular, Chapter President Connie Schielie asked for clarification about committees and how they are to be chaired and function within the chapter structure. It was a very helpful training and everyone left with a greater understanding of the importance of chapter committees.

The Greater Peoria Area Chapter is currently gearing up for a regional meeting that will include all of the chapters in Region 5. Check out page one for more on conducting a region wide meeting in your area.

Saline County Chapter Member

Aside from visiting chapters, when working in the state office I receive phone calls from coalition members as well as persons needing information and referral. A couple months ago I was contacted by a senator’s assistant who asked if I would give a person a call to assist him in some self advocacy issues. This young gentleman had civil rights issues and issues which included several situations with his living arrangement.

This young man’s initial contact with our office turned into an ongoing dialogue that has snowballed into regional development in southern Illinois. No Coalition chapter has been consistently active in Region 11 for over five years, but this young man’s enthusiasm has been contagious. He has helped to build a network of resources that encouraged another member, Jay Williams, to step up as Regional Director. Together their advocacy work brought more members to CCDI and in November of 2004 the Saline County Chapter was officially recognized by the Board of Directors.

You just never how one phone call can change so many things. Not only has this young man built a strong relationship with CCDI, he has also begun working with his local Center for Independent Living and has become an outstanding self advocate.

Thank you to that one individual, whose determination has helped me become a stronger advocate. In the process of helping himself, he has helped so many other people in ways he may not even be aware of.

By CCDI Member Susy Woods

It first happened in Springfield, November 4th. A joint conference was held that looked at the problems of sexual abuse and women with disabilities. This is a huge problem but a problem that has not been addressed very much or very well by disability groups or women’s groups.

In the Spring of 2004 Brenda Yarnell, president of U.C.P., Lincoln Land, and Polly Poskins, executive director of Illinois Coalition Against Sexual Assault, decided it was time to challenge this secrecy. Their two organizations came together to sponsor a conference that publicly looked at this problem, talked about the significance of the problem, and did some training of providers who work with women with disabilities as well as counselors for the Rape Counseling Centers in the State.

The speaker for the day was Dr. Mary Oschwald from the Center on Self-Determination and the Oregon Institute on Disability and Development. When first contacted, Dr. Oschwald would only come on two conditions. One was that we pay only her expenses for the conference and not pay her for speaking. The other was that people with disabilities be invited to also be part of the conference.

The conference ended up with over one hundred people present. It started out with a mother sharing the story of her daughter who had been sexually assaulted by the boy next door, someone she knew and trusted. She talked about what it was like to deal with the aftermath, with her daughter's emotions, with the police who came to the house, with the boy and his family who continue to live next door, and how this had impacted not just her daughter but their family and also their extended circle of family and friends.

Part of the day's training included the disability providers going to a break out session conducted by Sandy Laech of Growing Strong in Decatur. She talked to them about such things as indicators of sexual abuse, consumer rights, empowerment, and access and barriers to services. Shirley Paceley of Macon Resources in Decatur talked to the rape counselors about such things as identifying the sexual needs of someone with DD, abandonment and grief, sexual abuse prevention, and legal issues. At lunch people were divided into geographic groups so that people could continue to network.

I was lucky enough to be involved from the very beginning and was the one person on the committee that was not employed by either ICASA or U.C.P. I was there because I am the parent of a son with a disability and, as a rape survivor myself, know the great importance of this issue. I know first hand how widespread the problem is. I can name at least ten families where something like this has occurred to their daughters or sisters. These are families that live in the little rural community that I live in and it’s indication of how big this problem really is.

This conference was a wonderful first step, thanks in part to the leadership and vision of Polly Poskins and Brenda Yarnell. It is time for us as a society to admit that this is a problem that has too long remained hidden. Women with disabilities have too long been looked on as asexual and so this problem has not been important enough to talk about either by the disability community or by women's groups. Women with disabilities (especially if the disability is cognitive) are also too often not seen as women but treated by society as children to be protected at all costs. This, too, needs to change.

In short, women with disabilities need to be seen as all other women in the community, with the same needs and issues and they need to be treated as such. This needs to be done not only by families but also by society as a whole, including the legal and judicial system. It is time for us to see this as a civil rights issue and to begin to change things for everyone’s benefit: men, women, and society as a whole.

Dear Dawn is a monthly advice column written by CCDI Advocacy Coordinator Dawn Smith. Dawn has a master's degree in counseling from the University of Illinois and looks forward to addressing a wide variety of issues that are important to CCDI chapter members.

November 30, 2004

Dear Dawn,

Our Chapter has recently begun the task of putting together a disability awareness curriculum that we plan to use to help train elementary students. This has been a really big project and there have been some very unexpected roadblocks complicating the process. For example, one of the most basic things any group of people with disabilities should try to convey during disability awareness training is the proper terminology we would like people to use when referring to us. As a group we find the word “handicap” to be objectionable. This seemed like common sense until someone piped up and asked us why.

Some members of our chapter believe that the term handicap was brought about during the time of King Henry VII in England. King Henry made it legal for people with disabilities to beg in the streets (with their caps in hand) because it was believed that they could not otherwise make a living. Thus the term handicap was used to describe people with disabilities. That’s a great story and we liked it. In fact we almost made it part of our disability awareness curriculum until another member said she didn’t think that explanation was right. She had heard the whole King Henry story was just an urban myth.

Can you help us clear up the confusion Dawn? What does the word handicap really mean when applied to a person with a disability? Should we find it objectionable or is our distaste for the word completely unfounded? Should we use it to refer to people with disabilities, or is it a word best left for those who are betting on horse races?

Sincerely,
Confused in Springfield

December 7, 2004

Dear Confused in Springfield,

First of all, thank you for the letter. It's interesting that your letter came at the time it did because we too at this office have been alarmed by a recent headline in a Southern Illinois newspaper which read "Handicapped Group Becomes Official"

As a fellow person with a disability I was often identified as the "handicapped child." As an adult writing my master's project, I did research on the word handicapped and my sources, like your King Henry reference, led me to believe that the term came from "freaks" and beggars in the street with their caps in hands in need of pity. However since your letter I have conducted research on the Internet which both supported and disputed the origin of the word handicapped as it pertains to people with disabilities. I also found support of the word's origin being an urban myth. In the dictionary you'll find references for golf and horseracing as well as a sport from the past that is no longer played and has rules too lengthy to explain here.

Still confused? So am I. Urban myth? Who is to say? Why would someone start such a myth? If one chooses to believe there are negative connotations associated with the word handicapped then so be it. No one likes labels. I would encourage people to use a person's name and leave out the labels altogether. But sometimes when you have to identify a person as in terms of disability, I would suggest what many disability advocates suggest - use the people-first language "person with disability" instead of the word handicapped.

I personally find the word objectionable, even when used in terms of a sport. It allows, or compensates for the underdog. Are we underdogs? Nope. Just because I have a disability doesn't mean I believe myself to be disadvantaged or in need of pity. I would not use the word handicapped and I would discourage others from using it as well. Like I said, I'm not an under dog. I consider myself a slightly different model of the typical human.

Thanks for the letter. I hope my response helped.

-Dawn

By Jessica Hayes, CCDI Public Relations & Marketing Coordinator

It is hard to come up with just one title that best suites Kyle Packer. He is a husband, father of three, advocate, white water rafter, former CCDI Chapter President and a climber of mountains, but it is his newest title, movie star, that is really catching peoples' attention.

November 20, 2004 marked the world premier of the movie An Uphill Climb, an hour long documentary about Packer's life. The premier took place in Packer's hometown of Effingham, Illinois at the historic Heart Theatre. Hundreds of people crammed the theater for the premier which received a standing ovation and glowing reviews. Packer (45) has cerebral palsy, a disability he was born with. His usual mode of transportation is his wheelchair. But what about the places his chair can't go, like up the side of a mountain for instance? No problem, Packer uses his knees which he describes as tough and calloused. In fact, Packer's knees took him all the way to Mt. Everest base camp.

Packer said he was first approached in 2001 by filmmakers Craig Lindvahl and Joseph Fatheree after a presentation at Effingham High School. Packer was sharing his experiences on the Everest trip with a class when Fatheree, a teacher at the school, overheard part of the presentation. Afterward Fatheree approached Packer and asked if they could meet with Lindvahl, a fellow teacher, about possibly making a film together. Fatheree and Lindvahl had previously worked together on a documentary about Vietnam called A Time for Honor. That film won two Mid American Emmys for Best Script and Best Documentary. Before forming the partnership with Fatheree, Lindvahl produced three independent films all of which aired on PBS. Two of the films were used by the Smithsonian as part of traveling exhibits. A large portion of An Uphill Climb is dedicated to Packer and his love of climbing. Initial plans for the film included a trip to Mt. Kilimanjaro in Africa, but after September 11th both Packer and the film crew changed their plans. The new destination was Bath Rock in Idaho, Packer's home state, and the site of his first climb during his college days at Idaho State University (ISU).

It was at ISU that Kyle became involved with the Cooperative Wilderness Handicapped Outdoor Group or CW HOG for short. His first outdoor adventures with CW HOG included white water rafting down the Snake River. As much as it might sound like Packer is a daredevil, he will be the first to tell you that he is in fact just the opposite.

"Water is my #1 fear," said Packer. "I sink like a rock!" Packer says his friends in the CW HOG group drug him along to his first Snake River trip against his will. The night before, he had attended a fundraiser for the group where, after a few beers, Packer says he "felt brave" and signed up for the trip. The next morning they held him to his word.

An Uphill Climb is told from Packer's perspective, a style of filmmaking that gives the viewer an almost palpable sense of what it's like to be disabled. Sometimes Packer's solutions to the problems posed by life with a disability are simple to remedy; he is a regular MacGyver with duct tape. But, it is Packer's fears and struggles that are bravely brought center stage and exposed allowing a sense of realism rarely seen in films. Packer's candor and absolute refusal to be limited by other peoples' perception of disability demand the audience’s respect.

An Uphill Climb already won three Mid American Emmys in October before its release. Those awards were based solely on its promotional pieces. Packer is very optimistic about the film's potential. Lindvahl has worked extensively with PBS in the past and is currently working on getting the film airtime there. In addition the film has traveled to Sundance Film Festival and plans are currently being made to forge a relationship with United Cerebral Palsy to ensure greater distribution.

To order your copy of "An Uphill Climb" Contact:
Callan Films
15768 East Seven Oaks Circle
Effingham, IL 62401
(217) 536-9182
E-mail: clindvahl@effingham.net
VHS: $19.95
DVD: $23.95
Movie Poster: $5.00
Plus tax and shipping.