Robert Kusel - Catherine Butzen speaking at the Town Hall meeting

Faced with possibly massive cuts in state funding for education, more than 100 parents, teachers, students, and others packed a gym in West Rogers Park on June 16 to urge state officials to protect special education.

The Town Hall meeting, held at the Joy Knapp Center, was organized by Jewish Child & Family Services, Keshet, and the Jewish Federation of Metropolitan Chicago, which operate or support a variety of special-education programs for students from pre-school age to 22. The Town Hall included a panel of five state legislators, plus representatives from the Governor’s office and the Illinois State Board of Education.

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In an overview of the state’s economic crisis, Special Education attorney and advocate Phil Milsk explained that Illinois is facing a $13.5 billion fiscal deficit, a figure roughly equal to half the entire state budget. In cutting budgets and finding new revenues to reduce that hole, education funding could be slashed by $1.3 billion. Those numbers are by no means final, Milsk said, and could be the focus of wrangling between the governor and the General Assembly for months. But it is clear that major action is necessary.

Several panelists noted that many special-education programs are mandated by the federal government and can’t be cut. That doesn’t answer the question, however, of how to pay for them. Everyone on the panel urged ongoing advocacy by those at the meeting, to make certain their message reaches legislators and other state officials.

The panel, moderated by Ann-Louise Kleper, who chairs the Federation’s State Government Affairs Committee, included Sen. Ira Silverstein (D-8th); Sen. Heather Steans (D-7th); Rep. Rosemary Mulligan (R-65th); Rep. Karen May (D-58th); Rep. Elaine Nekritz (D-57th); Julie Smith, education policy adviser to Gov. Pat Quinn; and Beatrice Diaz, the ISBE’s associate general counsel.
~Joel Schatz

Catherine Butzen, an alumna of the JCFS Therapeutic Day School and published author, opened the Town Hall meeting on special-education funding. This is an edited version of her remarks.

My name is Catherine Butzen, and from 2003 to 2006 I was a student at the Joy Faith Knapp Center. Nobody called it that, though; it was always just JCB. Nowadays it’s JCFS, and I have to struggle to remember the change in the name, but it’s still the same old place.

When I made the transition from grade school to high school, I didn’t see special ed in my future. Sure, I had temper-control problems, but everyone thought it was simply the result of being in a school I didn’t like. At Lincoln Park, I tested into the International Baccalaureate honors program, and my family and I assumed that in the new environment, I would be able to buckle down and do better than I had before. That was the plan, anyway.

I started having strange attacks of rage. Sometimes they were provoked, sometimes they weren’t, but they were always unnatural. I would want to lash out at people who hadn’t done anything to me. It grew harder and harder to speak to my teachers and classmates: if I looked them in the eye, I would feel a powerful surge of revulsion and hatred. I had to be free of them, any way I could. My thoughts began turning more and more to violence.

My high school didn’t know what to do with me. I went to a school counselor, and I’ll always remember what she said: “I don’t think I’m qualified to handle this kind of thing.” It terrified me almost as much as the rages. What was going on with me? My grades continued slipping. I had already fallen out of the IB program, and the way I was going, I could barely qualify for honors courses.

Eventually, Lincoln Park—politely but firmly—kicked me out. They had to, they said; they considered me a danger to their students and faculty. I had no idea what was going to happen to me. My parents were called in to a meeting when the school decided to get rid of me, and one of the Lincoln Park teachers suggested the JCB facility. Special ed? Heck, we still didn’t even know what was wrong with me; special ed felt like jumping the gun, or even like giving up. But my parents felt it would be the best thing for me, and albeit with some reservations, I went.

The problem with telling a story like this is that you risk falling into cliché. Today, I am a fiction writer, and clichés are something I try to avoid. Unfortunately, when you reach this point, there are only so many ways you can say it: JCB saved my life. It sounds overdramatic, but it’s true.

Why do I say that? Because they did wonders. At their therapeutic day school, classes were small and well-organized. Each kid worked at their own pace, often on their own subjects.

There was a weekly class therapy session, and individual counseling for each student. The facility knew how to teach children who didn’t fit into a normal school, and I benefited from that. In that kind of place, I could work. I got straight As during my time at the day school—a record which led to my being offered scholarships by several colleges.

Today, I am a graduate of Coe College in Cedar Rapids, Iowa, where I received departmental honors in creative writing. I work as a technical writer and independent contractor for a software company, and my first novel will be coming out in July.

When I went into JCB, I wasn’t headed in the direction of college. More like the state penitentiary. I was out of control; I was hostile and unpredictable, I had attacked a member of my family without provocation, and there was little indication that—even if I had managed to qualify for an honors program—I would ever receive the education that would let me do anything with my life. Tonight, as my father and I were leaving the Town Hall meeting at the Knapp Center, he told me what it was like watching me during my spells: “It was like a mask changing,” he said. “You were a different person.”

I don’t want to be that person. I’ll always regret the things I did during my rages, and nothing can change that. But being placed into the JCB facility gave me a chance, and I’ve done my best to take that chance and go as far as I can with it. That was why I attended the town-hall meeting, and that is why I urge everybody reading these words to consider the future of special education in the state of Illinois. The meeting was about possible budget cuts for special ed, and the JCB—now JCFS—facility would be one of the ones suffering for it.

But the real victims would be the kids. Another cliché, I know, but it needs saying. If a child with problems doesn’t receive the help they need, they may wind up coming to the state’s attention another way—courtesy of the criminal justice system.

An education, especially an education in an environment where teachers and staff are prepared to handle the unique challenges of a special-needs student, can mean the difference between a good life and one not worth living. There’s no doubt in my mind that the JCB school gave me the tools I needed to get to where I am today, and I’ll always remember it fondly.

I was a special-needs student. My condition is still with me, and I know it’ll never go away. But I got help when I needed it the most, and because of that, I know that I can look forward to the future with anticipation. And I hope that other children get that same opportunity.

~Catherine Butzen, Class of 2006

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A video letter to the elected official in the State of Illinois to let them know why reinstating the financial funding is of the utmost importance.

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Anthonia Akitunde/MEDILL - Students in Gateway to Learning fold bags into boxes for 2 cents per box as part of their vocational worktraining. However, with state funding for developmental disabilities declining, programs like Gateway's expect drastic cuts in the coming months

Students gather around large mixing bowls set atop the high kitchen tables in the classroom. They smile as they stir batter with an electric mixer, chattering among themselves and with their teachers. Laughter can be heard over the loud whir of the mixer.

A staff member asks a student what she is making.

“Strawberry cake,” she responds, the words barely intelligible, her small mouth straining to form each raspy syllable. A fellow classmate staggers over to hug the staff member, his blue eyes bulging, his mouth hanging open.

These students are in an adult day training program at Gateway to Learning in Chicago’s Lincoln Square neighborhood. All have been diagnosed with some form of a developmental or behavioral disorder. Gateway offers students life training to enter the mainstream world.

Now Gateway faces cutbacks that could end its adult pre-vocational programs based in food services. The program has already used $80,000, more than half of its reserve funds, to keep the center open for these adult students, said executive director Cheryl Hennelly.

“We should be finding out by July if they’re going to cut us again,” Hennelly said. “If they cut us, we’d have to close. It would be too detrimental.” The “they” Hennelly refers to is the Department of Human Service, which funds developmental disability services through grants.

The department received the $6 billion it sought for the 2010 fiscal year despite the state’s financial crisis. Although almost $1.6 billion would support developmental disabilities, many special needs advocates wonder whether that money will continue funding adult programs.

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Hennelly said Gateway has not benefited from past increases in developmental disabilities funding. Adult programs are not guaranteed funding like special needs public schools and children’s programs that receive funding through the Illinois State Board of Education. For adults with developmentally disabilities graduating from high school, funding shortages may mean a gap in services between school and adulthood .

Individuals aged three to the day before their 22^nd birthdays receive speech and occupational therapy, social work and medical assistance for free or low-costs, Hennelly said. But when they turn 22, there is a rate placed on how many hours of instruction or support they can receive. For day training at Gateway, each adult receives state funding of $1,194.85 ($10.39/hour and 115 hours a month). In the 15 years Hennelly has been executive director the rate had only increased by $0.25.

“They’re still disabled,” Hennelly said. “What makes them any different when they turn 22?”

Feeling it right where it hurts

Programs benefiting the developmentally disabled already felt the crunch prior to the new state budget passed earlier this week. Since legislators did not accept a permanent or temporary income tax hike to increase state revenue, services for the developmentally disabled population will see cuts of 50 percent or more, said Tom Paulauski, executive director of advocacy group the Arc of Illinois.

Permanent revenue needs to be implemented, or it can take years for people with disabilities to see service, he said. Budget specifics will be available next week, but meanwhile Paulauski said information from both the governor and the Division of Developmental Disabilities office has Illinois receiving less funds than it did last year. This would cause a decrease in services across the board.

“It would be naive to think anyone new will be served,” not to speak of the more than 17,000 individuals already on the waiting list, Paulauski said.

A few grant programs already suffered an almost 12 percent cut in services in January 2009. Programs such as Gateway that were reliant on the Department of Human Services’ developmentally disabled grants could become extinct, he said.

And if some programs aren’t eliminated, substantial cuts will delay services and limit the number of people who can be helped, said Dr. Tamar Heller, professor and head of the Department of Disability and Human Development at the University of Illinois at Chicago.

Less money, more problems

In March 2009, Gateway to Learning had not received $160,000 in back payments from the state comptroller office. A lack of money had “caused delays in payments to vendors,” said Tom Green, a spokesman for the Department of Human Services. After a recent application for hardship funds, Gateway received money for the months of December, January and February within two weeks. However, it still has not received funds for March, April, and May.

If grant funding continues to be squeezed, special needs individuals and their families won’t have the support necessary to lead theirlives, Heller said. This includes group homes and day training programs like Gateway that teach students life skills like washing dishes, cooking for themselves and hygiene.

Since many special needs adults are unemployed, some end up sitting at home if caregivers do not receive funding from the state. For those who can’t watch themselves, a parent may have to quit work to stay at home with the child. Teachers and support staff face unemployment or dramatically cut wages as funding becomes scarce.

“People can’t afford to lose their jobs,” Hennelly said, but “that’s what the end result will be.”

Charlotte Cronin, executive director of Family Support Network of Illinois, termed the situation “a travesty.”

“There’s hundreds, maybe thousands of young (disabled) people graduating from high school to no services,” Cronin said. “Our school systems invest incredible numbers of dollars and heart into educating these young people… If the budget is cut, there won’t be funding to even support the little trickle we had before of kids transitioning from school.”

According to advocates, educators and community service providers, funding became an issue when the Department of Human Services changed the system in 2008.

(See “How the system works”)

The change has created a lag in services for students who need continued services immediately after graduation, said Athanasia Alexander, guidance counselor at Northside Learning Center, a Chicago high school for children with special needs.

“It’s very difficult and disheartening because the parents have done everything they can do,” Alexander said, “and then then they find out that their child might be at home for quite a few months after graduation.”

Playing the waiting game

What used to be a six-month to one-year wait can grow to three or more years even if you start the funding process at 18, said Gateway’s executive director.

People classified as having “emergency needs,” such as a care giver’s death, are more likely to receive funds.

“We got very lucky” when her nephew was considered an emergency case, said Joyce Smith, guardian of her 40-year-old nephew with Down Syndrome. He was placed in a residential home after his original guardian died.

For the remaining 17,000 on the waiting list who are not so “lucky,” the options are limited.

“Providers sometimes fund services through local city and county funds or charitable organizations,” said Green of the Department of Human Services. But he admitted those funds are also limited.

Navigating the system, while difficult, can lead to success, said UIC’s Heller.

Her own sister lives in Trinity Services, a group home for people with disabilities in Joliet, Ill. Though the effort to move her from a nursing home to Trinity “wasn’t easy” because of her sister’s severe medical issues, the results speak for themselves, Heller said.

Daphne Ron has cerebral palsy and was an overweight diabetic needing four insulin shots a day when she lived at a nursing home she said was “so horrible.” But after moving into Trinity, Ron is no longer a diabetic and lost 50 pounds.

“I love it” at Trinity, Ron said in a phone interview. “People here are nice.”

Looking forward

As adult students engage in end-of-the-day activities at Gateway last week Hennelly claims she knows of three other day training programs on the verge of closing.

That would be a “disaster for parents,” said Smith, a caregiver for a Gateway student.

“There has to be programs,” Smith said, before taking her nephew home for the day. “Not everyone is going to be able to take care of special needs adults and children without help.”

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It has come to my attention that Gateway To Learning Special Education and Training Center, located in Chicago, IL., has fallen victim, like so many centers providing similar care across the nation, to huge budget cuts and dropped government programs.

As many involved in the special needs community realize, these programs are so important to special needs children and adults in their development and training and as a result of these programs many have become productive members of society. To learn more of Gateway To Learning and the services they provide, please visit gtlchicago.com and feel free to provide a donation to this worthy institute.

Below is a letter sent to the lawmakers of the area that Gateway To Learning is located in. One hopes for the best that action may be taken to spare the special needs children and adults at Gateway, as well as all those across the nation, severe cuts as they are in dire need of the programs that have consistently showed success for their care. These programs are not earmarks or pork barrel projects…these programs are in fact at  the very heart of why we as a society show our compassion and extend to those who need it the most the assistance that they truly are entitled to.

It not only improves their lives but ours as well. It may be said that the sign of a healthy and prosperous society is one that provides opportunities and care to their neediest citizens, and our society has always fit that description, which is why I have sent this letter. To wit:

Letter sent to the lawmakers attention…

I am sending you this letter in the hopes that after reading the information contained within, you would see the necessity of lending assistance to an organization that has served the special needs community for over 25 years.

I understand that your time is valuable, and there are many projects that require your attention, which is why I am thanking you in advance for reading this letter and hopefully find it in your heart to intervene and assist those who are so dependent on the kindness of the system in which they live.

Gateway to Learning Special Education and Training Center is in desperate need of government help. The programs that were graciously set aside for the attention, training and development of special needs children and adults are either being reduced dramatically or cut altogether.

This is where your voice may be able to make a difference. As of today, Gateway To Learning serves over 60 special needs children and adults. They represent a wide variety of race and ethnicity. It is through the involvement of the faculty and staff that they receive the proper education and training that is designed specifically for their needs.

Their greatest attributes are the individualized programs that meet the unique needs of each and every student and adult. As a result many former special needs adults trainees have gone on to be productive members of society through the programs and training they received through this reputable institution. I truly feel that Gateway To Learning is an asset to the community they are located in and a benefit to those who need our need our care and specialized attention to them.

For those that can’t speak for themselves, my plea to you is to visit and witness for yourself the good and necessary work that Gateway To Learning provides to the special needs community. I am confident that you will agree that these children and adults need our care and guidance.

This is what have always made our city, state and nation truly great; the ability to have opportunities, concern and compassion to those who need our care and protection.

Thank you once again for your kind attention to this dire matter. The address is:

www.gtlchicago.com

Sincerely,

www.specialneedsnow.com

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The 10th Year Anniversary Gala, to be held on March 25, 2010, will benefit The Victory Center for Autism and Behavioral Challenges, a 501 (c) 3 non-profit organization that works to provide education and services to individuals and families with Autism and similar disorders in a secure and stimulating learning environment.

Miami, FL, March 04, 2010 –(PR.com)– The 10th Year Anniversary Gala is to be held on Thursday, March 25, 2010, at Christine Lee’s Gulfstream Park in Hallandale Beach, Florida. Proceeds from the Annual Gala will be donated to The Victory Center for Autism and Behavioral Challenges. The mission of The Victory Center, a Florida non-sectarian, non–for-profit Corporation, is to provide children with Autism and similar disorders comprehensive individualized therapy. The students receive one-to-one/ two-to-one student- teacher ratio therapy within a classroom setting based on the principals pioneered by B.F. Skinner and his Applied Behavior Analysis.

Thalya Olmos, Executive Director, states, “Early one-to one and/or two-to-one Applied Behavioral Analysis intervention is the key to the future for our students who face serious challenges in their younger years of life. Is it this very intervention that is provided by The Victory Center which sets a stepping stone for our children to succeed in the future as members in our society. This is why our programs and services are so unique within our community.”

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The Gala will be a fabulous evening of fine food, fun, and shopping with high-end “live auction” packages, vacation raffles, gift baskets, sports memorabilia, exquisite jewelry, and travel packages. One of their main Silent Auction items is a 12-day Asia cruise sponsored by The Yachts of Seabourn. Dates are subject to availability.

Marking their 10th year milestone, they will be honoring their past Honorees for making a difference not only within The Victory Center but our community as a whole in South Florida. In addition, they will be honoring Mrs. Annie Isabella, Mrs. Cindy Fraga, and Mrs. Jocelyn Rodriguez for their continual work within the Autism community. It is their work and dedication that has made The Victory Center a place where our children and families can come together as one.

The event will be emceed by Miami’s most well-known attorney and prominent leader Mr. Howard Finkelstein. Mr. Finkelstein is most notably known from “Help Me Howard” legal advice segment on WSVN-Ch. 7, as well for his work within the South Florida community. Hundreds of guests are expected to attend. Supporters include prominent members of the banking, real estate, building and legal communities. The event draws from the diverse South Florida community, from South Dade to West Palm Beach. Gala Chair Rhonda Hill states, “Our Annual Galas are very important fundraising events for The Victory Center. They are also lots of fun. Where else can you eat, drink, dance and shop while helping children within our community?”

Sponsorships opportunities and tickets are still available. Individual tickets are $150.00 each and can be obtained by contacting Thalya G. Olmos, Executive Director for The Victory Center at 305-466-1142 extension 212 or tolmos@thevictoryschool.org.

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New Name for Pioneer Group Reflects Broader Constituency and Services

NEW YORK, Mar 03, 2010 (BUSINESS WIRE) — MetLife, the nation’s largest life insurer, announced today that its nationwide group of highly trained Special Needs Planners serving families and individuals will operate under a new name, the MetLife Center for Special Needs Planning(SM). MetLife has been a pioneer in serving families with special needs through the former MetLife Division of Estate Planning for Special Kids, or MetDESK (R), one of the first dedicated groups of its kind in the financial services industry.

“Awareness of the true scope of the special needs community has expanded dramatically in the past dozen years, and our services and expertise have evolved as well,” noted Lori Epstein, vice president, MetLife. “Families caring for dependents with special needs want guidance to help meet planning challenges. While caregivers are aging, dependents are living longer. We want to be there throughout life’s journey for special needs individuals, helping them to have a more secure financial future and giving the entire family a level of comfort,” Epstein said.

“MetLife has a central role in the special needs community as a financial services provider and trusted source of guidance,” noted Kelly Piacenti, director, MetLife. “We have heard the concerns from the families our Special Needs Planners work with, as well as from our non-profit partners. We want to be able to provide the most comprehensive service to all the families we touch.” In addition to meeting stringent training requirements, many Special Needs Planners are either parents of children with special needs or have close relatives with special needs, Piacenti observed.

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“Over the years, MetLife Special Needs Planners have demonstrated their compassion, commitment and dedication and offered valuable guidance to many in making often difficult decisions,” noted Kari Carlson, President and CEO of the Tuberous Sclerosis Alliance. “I know our members will welcome the launch of the Center and the expanded services it represents.”

About the Center and its Special Needs Planners

Special Needs Planners are knowledgeable about many facets of special needs financial planning, including eligibility for Supplemental Security Income and Medicaid. By working with a qualified attorney, MetLife Special Needs Planners can help families address critical issues, including how to protect future government eligibility and ways in which a special needs trust can provide for lifetime care.

Special Needs Planners work with local non-profit organizations and service providers to give support and to secure the highest level of independence for the special needs individual. National non-profit partners include The ARC, Autism Society of America (ASA), Huntington’s Disease Society of America (HDSA), National Down Syndrome Congress (NDSC), National Organization of Rare Disorders (NORD), TASH, Tuberous Sclerosis Alliance (TS Alliance), and United Cerebral Palsy (UCP).

MetLife is a subsidiary of MetLife, Inc. /quotes/comstock/13*!met/quotes/nls/met (MET 36.88, +0.09, +0.25%) , a leading provider of insurance, employee benefits and financial services with operations throughout the United States and the Latin America, Europe and Asia Pacific regions. Through its subsidiaries and affiliates, MetLife, Inc. reaches more than 70 million customers around the world and MetLife is the largest life insurer in the United States (based on life insurance in-force). The MetLife companies offer life insurance, annuities, auto and home insurance, retail banking and other financial services to individuals, as well as group insurance and retirement & savings products and services to corporations and other institutions. For more information, visit www.metlife.com.

SOURCE: MetLife

MetLife
Judi Mahaney, 212-578-7977
jmahaney@metlife.com
or
Patrick Connor, 212 578-7039
pconnor@metlife.com

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Part 1

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www.youtube.com/watch?v=n1JMPB0B-TA

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Part 2

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www.youtube.com/watch?v=y2Y5NMA8CxA

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The program will provide advocacy-based solutions in the areas of financial planning, access to and maintaining government benefits, self-determination vs. guardianship and creating a blue print for your child’s lifetime in order to enhance and improve the quality of life for those with special needs.

Part 3

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www.youtube.com/watch?v=7unahCzGTBs

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Donation in place for Placer and Del Oro high school programs

David Davison draws a heart for his mother on the “desktop desk” donated by the Auburn Host Lions Club. Davison, who has Duchenne’s muscular dystrophy, had spent a year not having the dexterity and arm strength to write or draw on standard tables and surfaces.

The Auburn Host Lions Club and the 49er Lions Club have made schoolwork a little easier for students in the Functional Skills and Independent Living Skills programs at Placer and Del Oro high schools.

The “desktop desk,” a portable work surface for students with visual, orthopedic and Autistic Spectrum diagnosis, was given to the High School Special Education programs to assist students with needs that are not easily met with standard desks.

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Roy Kleger, Leo adviser for Placer High School, and Debra Oldziewski, president of Auburn 49er Lions Club, checked out the new furniture on Feb. 11, seeing it in use at Placer High.

The donations were inspired when Rob Mayben, a special education teacher from Sonora High School, visited local Lions Clubs to discuss his invention. His desire to promote independence and level life’s playing field at school, home, work and play for his students is at the core of his inspiration, he said.

The “desktop desk” was built to help his students with cerebral palsy.

The work was created with students who could sit on benches or use large flat table tops to create their work. Prototypes of the table were made out of the various materials, to accommodate other disabled students

Mayben took his idea around the United States searching for a manufacturer, and marketing his product to service clubs and regional centers. After five years, he found a manufacturing company, and 160 of the tables were built.

At Placer High, the table went into immediate use with David Davison, a 17-year-old with Duchenne’s muscular dystrophy. Davison had not been able to write or draw academically for many months due to an advancement of his disease. When he moved his electric wheelchair into place, and had his arms placed on the slanted table, he cried out, “Get me a pen! I want to draw!”

His wide smile and enthusiastic efforts at writing his name and drawing a heart for his mother were the happy result of this innovative invention.

Details about the “desktop desk” can be found at desktopdesk.com, or call Mayben at (209) 736-9200.

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