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United Cerebral Palsy of Southern Illinois Summer 2008 United Cerebral Palsy For longer than two years, Joey had an of Southern Illinois Individualized Service Plan in place with UCPSI that stated his goal of walking at #9 Cusumano Professional Plaza graduation. His mother said, “Joey has always been in a chair but thanks to Dr. Mt. Vernon, IL 62864 Froehling, now he can walk 73 yards with Phone: (618) 244-2505 assistance! A million thanks to Dr. Froehling”. Toll-Free: (800) 332-9745 Fax: (618) 244-3568 Joey has cerebral palsy and has been involved with UCPSI since he was seven E-Mail: email@example.com years old. He overcame many obstacles to get where he is today, including five major Website: surgeries on his hernia, eyes, back and www.ucpsouthernillinois.org legs. UCP of Southern Illinois does not recommend or promote any therapy, In his spare time, Joey is a blues singer and treatment, views or opinions that are his band is the Joey Odum Blues Project. contained in the newsletter. Their first CD, entitled “Work Hard to Play the Blues”, is soon to be released. Their United Cerebral Palsy of Southern songs are currently are sale at Illinois (UCPSI) covers a 27 county area www.fuzz.com. His song “Crazy About You” providing case management, information has hit the Independent Artists chart in and referral services, equipment loan England at #2 and China at #5. He is program, ability awareness programs in currently attending John A. Logan College schools and a monthly no-cost orthopedic in Carterville, IL, majoring in music clinic. business with radio/television minor. Standing Room Only Joey Odum was an 18-year old graduate from Marion High School in May 2008. Joey walked across the stage to the sound of thunderous applause and a standing ovation to receive his diploma, fulfilling a lifelong dream. 2 United Cerebral Palsy of Southern Illinois Football Mini-Camp with players from the St. Louis Rams was enjoyed by 65 area children. Middle Line Backer Tim McGarigle (#59) and Right Tackle Mark LeVoir (#75) were on hand June 7, 2008 to provide tips from the pros. Silent Auction items included an authentic autographed Steven Jackson jersey, 2 team autographed footballs and a mini helmet autographed by Tye Hill. Watch our website www.ucpsouthernillinois.org for information regarding the annual event in June 2009. 3 United Cerebral Palsy of Southern Illinois “7 THINGS NEVER TO SAY TO PEOPLE often comes across just exactly like WITH DISABILITIES” saying „I don‟t think of you as a woman,” or „as Black,‟ or „as Asian‟, adds Dagit who has brittle-bone disease. 5. “How do you go to the 1. “What’s wrong/what happened?” bathroom?” or “Were you born that way?” It is rude to ask this. Would you like Just because a person has a someone to ask you this? disability does not give anyone the right to ask such a personal 6. “But you look so good.” question. “What‟s wrong should “Comparing the appearance to ability never be asked.” A simple “Hello” of a person with a disability to a would suffice. person without a disability has the 2. “Oh, if you just have faith, you can same underlying messages as be healed.” saying to a woman, „Your report was well done, for a girl,‟ Susan This comment suggests that a Henderson, Managing Director of the person with disabilities can be Disability Rights Education and “fixed.” It is an insensitive comment Defense Fund DREDF), tells and disregards medical issues and DiversityInc. diagnosis/diagnoses. 7. “Oh, you’re here, you must feel 3. “Speaking slowly or loudly to better.” someone who is in a wheelchair.” “It‟s wrong to assume that because “A common misconception is that someone is at work, he or she is people with physical disabilities, feeling better or not affected by his such as motor or sensory or her disability that day. For people impairment, also have other with chronic or „invisible‟ illnesses, disabilities, in particular mental becoming accustomed to living with disabilities.” the disability is a necessary part of 4. “I don’t even think of you as a an individual‟s day-to-day life.” person with a disability.” “There are approximately 11.8 This may be meant to compliment a million people with reported person to make them feel good; disabilities in the workforce, however it may be viewed as an according to the U. S. Census insult. “What they are trying to say, Bureau.” in their own way is that I think of you (The above information obtained as a capable and able or even from www.diversityinc.com 4/16/08) powerful,” says Deb Dagit, Chief Diversity Officer for Merck & Co. (No. 21 on The 2008 DiversityINC Top 50 Companies for Diversity list). “But it 4 United Cerebral Palsy of Southern Illinois Hamilton, White, Williamson, Saline, Gallatin, Johnson, Pope, Hardin and Massac. Their leaders are Lynn There are many more persons with Heath with assistant Don Heath disabilities, who are family members, and Daylin Ward whose assistant is neighbors and other community Ian Brown. members so remember to be use People First language. People are I-SAIL needs your help. They want people first. Even in this day and to talk to you to find out about you age, people with disabilities are still and your life and “to know about the referred to as handicapped, retarded help you need to live the life that you and other derogatory terms. A want.” I-Sail is in the process of disability is just a very small portion scheduling meetings close to where of who a person is. you and others who are interested live. The meetings will be group meetings. After meeting with you, they will use the information that they gather to “plan” to start a self advocacy organization then more meetings will be scheduled. To find out more information about meeting I-SAIL (Illinois Self-Advocates in times and places, you may call their the Lead) toll free number 1(866)476-3783 ext.19 or on their website at I-SAIL is an independent group of 16 self-advocates who represent www.i-sail.org. persons with developmental (The above information was obtained disabilities in Illinois. Their goal is to from the I-SAIL brochure.) work together to make a “plan” to begin a self-advocacy organization in Illinois. There are many teams throughout Illinois. The teams for UCPSI territory coverage are: the Central Team whose leaders are: Michelle Spurlock and Elizabeth Davis. Their assistant is Missy Kichline. The Central Team works with people in the following counties: Randolph, Perry, Jackson, Union, Alexander and Pulaski. The Southern Team is for the following counties: Fayette, Effingham, Jasper, Crawford, Marion, Clay, National Epilepsy Foundations J. Richland, Lawrence, Jefferson, Kiffin Penry Patient Travel Wayne, Edwards, Wabash, Franklin, Assistance Fund 5 United Cerebral Palsy of Southern Illinois This fund is made possible in honor Southern Illinois located at 1100 S. of J. Kiffin Penry who died in 1996. 42nd St in Mt. Vernon, Il. 62864. He is “considered one of the most (618) 244-6680 influential epilepsy leaders of his generation.” Novartis Pharmaceuticals and the Epilepsy Foundation are sponsors and support this fund. This fund provides transportation funds for persons who have to travel over 50 miles from their residence for medical treatment/care for epilepsy/seizure disorder. You must have inadequate SUPPORT GROUP PARTICIPANTS finances to meet costs of this travel. WANTED A letter is needed from the doctor, Athena Guevara is a little girl who will soon medical service provider, or the turn seven. She has to struggle on a daily facility such as hospital where basis, but tries her hardest to succeed in services will be provided. The letter everything that she does. Athena was born must be on provider‟s letterhead with with Aniridia. Aniridia is a congenital and the date and reason for the hereditary condition that caused Athena to treatment. be born without iris‟ leaving her visually Applicants must complete a impaired. Aniridia is progressive and “Request for Travel Assistance Athena‟s vision will continue to decline as Application.” This is a fund of “last she ages. resort” so at least three funding Athena‟s Mom, Penny, is Athena‟s best sources have to have been advocate making sure she gets everything contacted in patient‟s residential that she needs which Mom admits can also area and also the insurance be a struggle. Penny lives in Centralia and company the patient has. If you would like to start a support group for must go out of your county or state, parents/caregivers of children with an explanation why must be disabilities to meet on a regular basis and included. share their thoughts, ideas, struggles and This fund assists with patients travel resources. Penny may be reached by cost only unless the patient is a phone at (618) 533-6851. minor or there is an “extraordinary” ILLINOIS ASSOCIATION FOR PARENTS need that requires the patient have OF CHILDREN WITH VISUAL another person to assist them. Also IMPAIRMENTS (IPVI) to be able to receive reimbursement, you must have all the “original” Need an advocate? If you have a child who receipts. has a visual impairment, you may contact IPVI. One of the many services IPVI The local affiliate for an application provides is advocacy on a statewide level or any questions regarding this fund for children who are visually impaired and is the Epilepsy Foundation of their families. IPVI has a mission: 6 United Cerebral Palsy of Southern Illinois “Throughout Illinois, IPVI increases allows persons to try equipment out before opportunities for children who are visually they purchase it to see if it is the right fit. impaired by providing supportive services to They also offer the following services: their parents.” IPVI has a vision which is Analysis of computer “To insure specialized services are compatibility of equipment implemented and delivered by selected professionals familiar with the needs of Short-term training on adaptive children with visual impairments so they technology at the worksite or the may obtain the same educational, cultural, Center social and professional opportunities as their sighted peers.” You may contact IPVI Home or office equipment set-up at their toll free number at 877- 411- 4784 Follow-up on equipment for or at their website: www.ipvi.org. Email: further needs and additional firstname.lastname@example.org. specialized job training Consultation with a person‟s employer‟s computer technicians to make sure equipment is compatible with what they are using For additional information or any questions that you might have, you may contact William Bielawski, Director of Adaptive Technology at (312) 997-3671. (Information from TECH TALK SPRING 2008) DME (Durable Medical Equipment) Just a reminder that you can search and possibly find durable medical equipment online through the DME website at www.infinitec.org You can also post your used adaptive equipment on this website. The majority of the equipment listed is at no cost to you except possibly for a shipping cost. CHICAGO LIGHTHOUSE DEVICE LOAN PROGRAM The Chicago Lighthouse for the Blind has an equipment loan program for persons who are visually impaired. This program 7 United Cerebral Palsy of Southern Illinois What is the difference between SSD and SSI? SSD is for a person who has worked and paid into the disability program through payroll deductions and are now disabled and can no longer SPEAKING OF RESOURCES…………. work. SSI is for a person who is disabled and is based on need and UCP (United Cerebral Palsy) has a wealth assets. Both of these programs of information and resources on their require a person to be unable to website at ucp.org work for at least one year or not be cerebralpalsy.org provides information on able to work their job for one year. state listings for children‟s programs with Are children eligible for either cerebral palsy, news about treatments and SSD or SSI? therapies, stories of inspiration and information about SSI benefits Children who are under age 18 are only eligible for SSI. The assets of a cerebralpalsyfacts.com has book parent such as income and resources for caring for your child with resources are a determinant for if the cerebral palsy, information on research, child will qualify. When a child turns current treatments and assistive technology 18, persons no longer have parents‟ clinicaltrials.gov provides information resources as part of their own and regarding clinical trials on cerebral palsy can apply as their own person. (This website information was obtained Do I have to be of retirement age from NEUROLOGY NOW to collect SSD or SSI? November/December 2007.) SSI and SSD are available to all persons who qualify regardless of SOCIAL SECURITY DISABILITY AND SSI their age if they have a disability. DISABILITY CLAIMS For SSI, a person must meet eligibility requirements for both What is SSD (Social Security disability and resources. Disability?) SSD is a Federal program to help Do I have to be totally disabled to people with an illness or injury that obtain SSD or SSI? are unable to work. The requirements for disability for What is SSI (Social Security both SSI and SSD take into account Income?) the person‟s age, education, work experience and skill level which all SSI is also a federal program to help determine disability. people with an illness or injury who are unable to work. Do I have to use up the state disability benefits available before applying for SSI or SSD? 8 United Cerebral Palsy of Southern Illinois You do not have to wait for any state If filing your own claim proves to be programs to run out before you apply unsuccessful or you need professional for SSI or SSD. You can apply for assistance, the consult with an attorney to SSD/SSI the day you are unable to assist you. “Statistics have shown that work. claimants represented by an attorney are more successful than those who represent Can I apply for SSI/SSD while I am themselves.” www.disability-claims.net still employed? (Information obtained from the National If you are still employed and Social Security Disability advocates, “engaging in substantial gainful Fleming, Greenwald & Associates and activity,” you are not eligible for SSI www.disability.net) or SSD. If you are employed and earning a certain amount such as www.disability-claims.net is available for $860.00 which is the dollar amount any questions you have regarding disability for the year 2006, you would be conditions, child disability, disability considered a person who has attorneys, disability claim stages and links “substantial gainful activity.” to other helpful websites and resources. If you do not have a computer, your local Can I apply for SSI/SSD if I am library should have a computer for you to currently receiving vacation pay, access. You may also contact your local wage continuation or accumulated social security office for information or sick pay even though I am still questions you may have. unable to work? Yes, because the person, although receiving wages listed above, is not performing “substantial gainful activity” so can still apply for SSI or SSD. If I have been self employed and have trouble working can SSD still be applied for? If a person is self employed and considered to be performing “substantial gainful activity” ($860.00 in 2006) in the role as an employee AUTISM RESOURCES and in addition, the person filing for Some statistics report that 1 out of every SSD is providing “substantial 150 children has some form of autism. It is services” in the business (more than crucial to be aware of resources that are half the total time that is required for available to assist you, your child, another management of the business or family member or someone in the more than 45 hours of work per community that you know. month) those services would be considered “substantial gainful The AUTISM PROGRAM OF ILLINOIS activity.” (TAP) is a network of resources. TAP “provides the strategy and framework for 9 United Cerebral Palsy of Southern Illinois the State of Illinois to address the complex To find out more about this center, you may issues involved in diagnosis, treatment and call 536-2122 research for the thousands of children in (Resource information obtained from Illinois with ASDs (Autism Spectrum http://spotlight.siu.edu/02232005/autismCe Disorders.) Created by Public Act 93-0395, nter.html) TAP has three regional centers and has expanded to include two affiliate centers. This network has grown to a statewide HAPPY SUMMER!!!!!! network of more than twenty - seven agencies and universities. Funding for TAP is possible through the Illinois Department of Human Services. To find out more about TAP, you may visit their website at www.theautismprogram.org (Information obtained from their website) THE SIU CENTER FOR AUTISM SPECTRUM DISORDERS This center offers diagnostic, intervention and consultation services for children with autism spectrum disorders and their families. “What we have to offer is this combination of the university‟s expertise in behavior analysis and speech therapy and the systematic approach to instruction that we provide that is not available anyplace else.” This is a site for training and teaching graduate students in behavior analysis, speech language pathology and related fields of study. Anthony J. Cuvo is the director of SIU‟s center as well as a professor of Behavior Analysis and Therapy. Rebecca J. Trammel is the clinical director and also an instructor of Communication Disorder and Sciences program. SIUC‟s center is the site that covers UCPSI‟s service area. There is also a center at the University of Chicago and at the SIU School of Medicine in Springfield. The services are free due to a three year grant from the Illinois Department of Human Services.
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