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| About FSN Advocacy Family Stories Family Support Best Practices FSN Information Available Fundraising Links Newsletters Upcoming Events What are Home-Based Support Services & Family Assistance & How Can I Apply? |
For a complete PDF version click HERE
$24 Million Added Back to Disability Budget You
Had to Be There to Believe It! We said it last spring
and now we say it again. You had to be there to believe it!
Last spring advocates celebrated heartily after pulling off the
impossible in this dire budget year - the Illinois State budget was increased by
$60 million dollars for important programs for people with disabilities! Celebration quickly turned to consternation when Governor Blagojevich announced a 2% reserve on funding for the whole Department of Human Services budget. This effectively reduced the increase by MORE than half as the reserve was placed on the budget after the 4% increase was added in – an estimated $24 millions dollars! Members of the “Do
The Right Thing Coalition” trekked to Springfield on November 5 and November
19 to ask policymakers for their help. Advocates visited and called their
legislators, provided them with information, and shared their own personal
stories. Never
doubt that we are powerful!! On December 3rd, advocates received the
great news that the Governor had rescinded the 2% reserve on disability
services. The news is not perfect. For some reason the Governor did not
reinstate the reserve for services for people with mental health disabilities.
We need to work as one voice... a disability is a disability. None
the less, this is a great victory and would have never happened without the
great effort and collaboration of advocates and organizations all around the
state. THIS MEANS YOU!! Thanks to each and every one of you who
came to Springfield, made those phone calls and made those visits. Our
big thanks to all our colleagues in the "Do the Right Thing
Coalition"; The Arc of Illinois, UCP of Illinois, IARF, Illinois Network of
Centers for Independent Living, the Institute on Public Policy. Other
important victories are also to be celebrated. The General Assembly voted to
override a number of the Governor’s vetoes; HB
684 created
a comprehensive Olmstead blueprint and advisory committee, HB
816, which requires annual reports to the
General Assembly on how “One Stop” employment and training centers are
serving persons with disabilities, and SB 472, the Death Penalty Reform
bill which includes a section that disqualifies persons with mental retardation
for the death penalty. The General Assembly also passed HB
1881 which excludes Special Recreation programs from tax caps and will allow
local governments to create and tax for Special Recreation Programs. Margaret
Mead said, “Never doubt that a small group of thoughtful, committed people can
change the world. Indeed, it is the only thing that ever has.“
That’s us! Let's Continue to "Do The Right Thing!" At
least a month of hard work and the contributions of a diverse group of advocates
have led to agreement on the spring agenda of the “Do the Right Thing
Coalition”! An
eight-page document will be posted soon at our website. However, the following gives you a quick overview of our goals! Five advocacy
groups join the FSN in advocating for these goals. They include the Arc of
Illinois, UCP of Illinois, Illinois Network of Centers for Independent Living
and IARF, and the Institute on Public Policy. Never before have we been so
organized. This is an ambitious agenda. Advocates agreed it is important to be
clear about the needs of the disability community. Can you help?
Be ready to connect with your legislators as our strategy develops.
Consider helping us with one of our One-Day Conferences described on the next
page. We are strong together! Do
The Right Thing Guiding Principles
Policy
Initiatives
Help Us Share the Family Support Message! Host a Saturday One Day Conference for the FSN Please help us reach out to people with disabilities and their family members to share information and resources by hosting a Saturday One-Day Conferences with the Family Support Network for your group or organization. The
Family Support Network has made a commitment to organize and energize people
with disabilities and their families around this state. We can do this by
providing information and education in as many settings as we can, in as plain
language as we can. We call it “mom-speak”. People
with disabilities and their families need to have an understanding of current
issues and feel they have the skills to share their stories. That is our goal. This
spring we will again be hosting our Saturday “One-Day Conferences” all
around the state. We are organizing them now. Susy
Woods from our Board of Directors has agreed to do the downstate conferences as
she lives in Chesterfield (close to the Alton-Collinsville area). United Cerebral Palsy of Illinois has offered to help us with two One-Day Conferences downstate, and yes, I mean SOUTH OF SPRINGFIELD! The
Arc of Illinois will be helping us with two One-Day Conferences in the City of
Chicago. We will be trying to do one especially tailored for Spanish speaking
individuals and families! I
will organize a conference in Peoria. We have offers to sponsor conferences in
the Rockford area and in the Quad Cities. Can you or a group you are
affiliated with help us with a Conference in any of these areas: Chicago
Suburbs, Champaign or another area of your choice? This
is the help we need: 1. $250 to help with postage, mileage, copying. We will mail brochures to the appropriate geographic area from our database. We hate to ask for help with money, but we're operating on a shoestring. 2.
Finding a site… We usually easily find free sites in settings such as
churches or agencies. 3.
Distributing invitational brochures to everyone and every group you know. 4.
Inviting one or more legislators for an hour or so in the afternoon. 5.
Providing coffee in the morning and a light lunch in the afternoon. A
typical One-Day Conference is on a Saturday, starts with registration at 9:00
a.m., and ends at about 3:00 p.m. The
morning includes talking about our needs, how we got to where we are, the shape
of services today, and what we would like them to look like in the future. In
the afternoon, we talk about the ins and outs of connecting with your
policymaker, do some role playing, and have an invited legislator come to talk
with us about how important it is for us to share information with him/her and
how he/she best receives that information. We also spend time sharing our
stories with the legislators. These
Conferences are important. People with disabilities and families must be united
in telling our stories if we want to be sure the services we need are available.
Please Help!! Remember,
"We can grumble and groan. We can shake our fists at the sky and bemoan the
priorities of the State of Illinois. But, if we don't take time to tell our
stories, who do we have to blame? Only ourselves." Center for Disability and Elder Law Offers Free Legal Services for Education Issues to Cook County Residents The following information was provided by the Center for Disability and Elder Law in Chicago. The Center for Disability and Elder Law (CDEL) has been providing free legal services to the disabled and elderly communities since 1984. In response to the widespread failure of public school systems to provide appropriate, or in many cases, any education to children with disabilities, in 1975, Congress enacted a special education law. According to this law, children with special education needs are entitled to a free, appropriate education in the least restrictive environment possible. Fortunately, CDEL has a vast network of attorneys who specialize in this critical legal area. If your child is in need of legal assistance, lives in Cook County and demonstrates financial need, please contact our office at (312) 908-4463. TechConnect Low Interest Loan Program Expanded The
TechConnect Low Interest Loan Program helps people with disabilities and their
families. The loans allow them to borrow money to get AT devices and services,
including home modifications, so they can learn, work, and live independently. People
with disabilities and their families have historically had difficulty qualifying
for or repaying traditional bank loans. The Program has several features:
Now
people with disabilities and their families can get loans that would otherwise
be completely out of reach. The Program also helps people with disabilities and
families establish a positive credit history. The
Program's newest component is the "Telework Program". It expands our
loans and offers alternative financing that enables people with disabilities to
get computers and other equipment they need to telework from home or other
remote sites. Previously, that would not have been covered under the TechConnect
Low Interest Loan Program. With this money, TechConnect intends to increase
employment opportunities and create competitive employment outcomes. TechConnect could not do this alone. The Illinois Department of Human Services, Office of Rehab Services applied for and received two grants totaling $4,952,440 from the U.S. Department of Education to expand Illinois' TechConnect Low Interest Loan Program. Twelve Centers for Independent Living make up the consumer-controlled advisory committee that established and maintain the program's policies and procedures. They also approve/deny all loan applications. To find out more about the TechConnect Low Interest Loan Program contact Sue Castles, Loan Coordinator, at 800-852-5110 v/tty or you can access the accessible on-line application form, which is available in English and Spanish at http://techconnect.iltech.org/IATP/index.jsp.
Illinois Residents With Disabilities Recognize Benefits of Recreation Access Illinois In
suburban Chicago, a young man’s doctor recommends a program of physical
exercise to assist in his recovery from a spinal cord injury. His challenge is
to find facilities and programs close to home. A
woman in Springfield resolves that her new prosthesis will not keep her from the
exercise that she enjoyed before her injury. She knows it is critical to
maintaining her health, but doesn’t know where to find a facility that can
accommodate her needs. A
man in Collinsville who suffers a severe visual impairment realizes the need to
maintain a physical regiment, even if only a few days a week. What he is not
aware of are the programs in his area that will meet his needs – and how to
find them. A health club manager in Peoria knows that the Americans with Disabilities Act requires her to make programs and facilities accessible to people with disabilities. What she doesn’t know are the specific requirements, or whether there are grants and tax credits available. Recreation
Access Illinois (RAI) is a statewide program designed to answer all of these
questions, while heightening awareness of recreational opportunities for people
with disabilities. Launched
in July 2002 by the Office of the Illinois Attorney General, in cooperation with
the Illinois Association of Park Districts, RAI is beginning to have an impact
on how people with disabilities look at their health, and how service providers
look at the accessibility of their facilities. The
primary resource of RAI is its website at: www.RecreationAccessIllinois.org
or its toll-free hotline at 1-800-900-8096. Visitors to the web site are
encouraged to search a database created and maintained by the National Center on
Physical Activity and Disability through the University of Illinois at Chicago,
and find an extensive listing of accessible programs and facilities in Illinois. Owners
and operators of health and recreation facilities can also find resources and
links to assist in evaluating their facilities and help them comply with
accessibility laws. “People
with disabilities need exercise, recreation and social interaction as much or
more than the general population,“ said James Rimmer, Director of the National
Center on Physical Activity and Disability and a major supporter of Recreation
Access Illinois. “Our goal is to make them aware of what’s available so they
can make choices for their good health, and to also encourage fitness and
recreation professionals to make their facilities more disability friendly.” Rimmer said that nationwide, 1 in 5 Americans has a serious physical disability. For these people, the benefits of physical activity and exercise are the same as for the general population: •
Increased heart and lung function He
also points out that the likelihood of persons with disabilities living
sedentary lifestyles is much greater than those without. “The efforts of
Recreation Access Illinois signal a renewed emphasis on the health, fitness and
well being of all Illinois residents,” said Ted Flickinger, Executive Director
of the Illinois Association of Park Districts. RAI is made possible with
funds from a Vitamin Anti-Trust Settlement. Funds are administered by the Office
of the Illinois Attorney General. For more information on Recreation Access
Illinois, please contact Jason Speaks at the Office of the Illinois Attorney
General, 217-785-5790 or jspeaks@atg.state.il.us, or Karen Korsgard at Hult
Fritz Matuszak Public Relations, 309-673-8191 or kkorsgard@hfma.com. Saying Goodbye to a Friend and Hero, Margie Peterson
Margie and her
friends were the very beginning of the advocacy movement in our state. Margie
began her advocacy efforts for her son, Paul, when she moved to the Quad Cities
more than 30 years ago. Margie became involved with a group of other mothers of
children with developmental disabilities that came together to support each
other. They, like other similar groups of parents around the country, began to
work together to get the supports they needed for their children. They were part
of those first waves of parent activists who believed that their children should
not be invisible, or worse yet, be regarded with disdain and fear. They believed
that their children deserved and had a right to the services they needed to
succeed in the community, close to family and friends. Throughout
her life, Margie was actively involved in improving the lives of people with
disabilities through her personal advocacy and participation in numerous local
and statewide organizations, committees and boards. The Family Support Network
is proud to say that Margie was a member of our Board of Directors and
participated on our Task Force. Margie also made important contributions to the
Arc of Illinois, the Statewide Advisory Council for Developmental Disabilities
and the Guardianship and Advocacy Committee for the State of Illinois. Recently,
Margie was working to bring a respite house to Rock Island County. In
May, the Arc of Illinois presented Margie with the 2003 Mabley Volunteer of the
Year Award, an award her family says was truly appreciated. Margie was described
simply but eloquently by the inscription on the Award: “Some people
dream of worthy accomplishments while others stay awake and do them.” Delores
Fox, a good friend and fellow advocate, said, “Margie would pick up on a need
and run with it. Margie got into the community and touched the people that could
make a difference.” Margie
Peterson was one of us, a mom, fiercely devoted to all of her children, with and
without disabilities. Margie was a shining a light for those of us to follow.
She showed us that we all can be heroes. Margie
Grace Peterson passed away on Saturday, September 6, 2003, after a courageous
battle with cancer. Margie
will be sincerely missed. The Family Support Network joins the family and
friends of Margie Peterson in the sorrow of their loss and the celebration of
the life of this extraordinary woman. Margie’s
family requested that memorials in her honor be sent to ARC of Rock Island
County for the Margie Grace Peterson Memorial, which will be used to help fund
the respite home. Challenged Finding A Dentist Who Takes Medicaid? When the Home-Based Support Services Program became a Medicaid Waiver program, many individuals with disabilities lost their ability to use that funding to pay for their dental services. People with disabilities often have significant dental problems and this was a huge loss. Participants in the Home-Based Support Services Program were told that they would have to use their Medicaid State Plan Card to access dental services. Far too often, participants were unable to find a Medicaid-enrolled dentist. To address this problem, the State of Illinois contracts with an organization called Doral Dental. Their job is to help Medicaid recipients connect with dentists willing to accept Medicaid reimbursement. Doral Dental also provides customer service and tracks and reports all complaints. In general, Medicaid covers the following services for adults: the initial dental visit when seeing a new dentist (not annual check-ups), X-rays once every 3 years, services to relieve pain, treat infection, or preserve teeth, general anesthetic and intravenous sedation when medically necessary, and dentures once every 5 years. Partial dentures are not covered. Medicaid does not cover preventive services such as annual check-ups and teeth cleaning for adults. To access services or for more specific information about covered services, you must contact Doral Dental. Doral Dental and the Department of Public Aid believe that people with disabilities are receiving the dental services they need. We know from the many stories that we hear that this is not the case. We believe that many people are not using Doral to access Dental Services and if they are, they are not following through to file a complaint if they are not successful. We must build the case that dental services for people with disabilities are abysmal in Illinois. The information below can be used to access information, services, and to file a complaint. Please contact the FSN with your stories of success and frustration. Good luck! Toll
Free Telephone Number:1-888-286-2447, Toll
Free TTY Number: 1-800-466-7566 Doral Website: www.doralusa.com DPA
website www.state.il.us/dpa/html/dental.htm FSN Forced to Change Newsletter Distribution For years, the FSN has made it a policy to mail our newsletter to everyone on our mailing list, regardless of whether they were a “paying” member or not. In fact, it wasn’t until about three years ago that the FSN began accepting dues from members. We needed that funding if we were to survive. The FSN has been lucky to almost always have some kind of grant funding that covered the cost of writing, printing, and mailing our newsletter. It costs over $2,500 just to print and mail it to the over 4600 people on our mailing list. As this article is being written, the FSN has just $4,756 in its combined checking and savings accounts. We simply can’t spend $2,500 to mail our newsletter. At the October meeting of the Board, it was decided that the FSN could not afford to distribute printed newsletters to non-members or to anyone who was able to receive it by e-mail. We are e-mailing links to this newsletter to everyone for whom we have an e-mail address and we are mailing hard copies to those paid and scholarship members who do not have e-mail. The FSN has 479 dues paying members. That’s just a bit more than 10% of our mailing list. Only about 20 of those members are “scholarship” members. We have never wanted to cut anyone off from information because they can’t afford it. We’ve been stubborn about mailing to everyone. We’ve lost that luxury. Its hard to understand that people don’t care enough about our work to send us that $15 or $25 or at least communicate and tell us that they can’t afford it and need a scholarship. If half of our mailing list would join at $15 each, that would provide two thirds of our annual budget! What a blessing! We believe that the information we share in these newsletters is important. We want to share it with everyone we possibly can. Please copy it and share. Please e-mail our website address: www.familysupportnetwork.org to your friends and e-mail lists. PLEASE become a
member of the FSN. Click here
to find a membership form. Please consider an additional donation. The
future of the FSN depends on you! I dream of winning the lottery. I dream of winning it big. I don’t dream of just a few millions. I want the Powerball, the big pot, the $100 million plus pot. I have big dreams about how that money will be spent. After I make sure my kids are secure, after I’ve bought Daniel a dream house (with swimming pool), and our family a summer cottage in Wisconsin, then I’ll start giving it away. I dream of being a “Grantor”, the person who empowers other people to do good work. I know where to start. I have an agenda. Its all the advocates out there working to improve the lives of people with disabilities, the folks who have a hard time leaving home to tell their stories, who can’t get away from their houses because of their disabilities and their responsibilities. I want to make sure we have voices. I want to be sure our voices are heard when important decisions are being made that impact our lives. I’ll never win the lottery. I never buy tickets. I know the odds. I think its nuts. I CAN be a “grantor”. I‘m not giving away a million here or a million there (darn). It’s $25 here and $50 there, once in a while, a $100. It’s a membership in the FSN. It’s very satisfying. The FSN has been writing hard, looking for grant money, money to make sure our voices are heard. It’s hard to find. The economy has taken a dive. While we’re still looking for the big grants, we’re coming to you looking for small grants, inviting you to share the power, enjoy the satisfaction of knowing that you have made a difference. Please become a FSN “grantor”. Your “grant” or donation makes all the difference. With your help, we will do important work. Please help; people with disabilities in Illinois need you. Thanks! Charlotte |
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