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United Cerebral Palsy of Southern Illinois

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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:      ucpsi@onemain.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
ipvi@ipvi.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.