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| About FSN Advocacy Family Stories Family Support Best Practices FSN Information Available Join The FSN Links Newsletters Upcoming Events What are Home-Based Support Services & Family Assistance & How Can I Apply? HOME |
For a complete PDF version click Here
What Is It You Aren’t Getting?
What
is it we’re not getting? How many times must we hear that parents of students
“transitioning” to adulthood are stunned to find out that there is almost NO
funding for new employment or day activities after graduation? How many times do
we have to say How can the same parents who have been fearless and tireless in their educational advocacy efforts be stunned and surprised to find out that post graduation services are not an entitlement and are difficult to impossible to find? Transition to what? How can we (or why should we bother) to do transition planning if appropriate supports and services after transition to do not exist? Let’s talk about that light bulb moment, not
the one when the parent figures it out. Let’s talk about the light bulb moment
when the student figures out that he’s home for the duration, that he’s
isolated in his own family home for the next forever more. Let’s talk about
behaviors that come from frustration, boredom and deteriorating skills. Let’s
talk about broken promises to our children. I am tired of hearing the numbers. What is it we have to say to get their attention when their child is twelve or six, or even 14½? Another legislative session has come and gone. The reviews are mixed. We console ourselves that we didn’t go backward…at least we don’t think so. We MIGHT have a $32.8 million dollar increase … if the hospital tax is approved by the feds… whatever that means. We’re not sure how the $32.8 million might be spent. Is it for “cost of doing business”? Is it for new supports and services? Is it for some combination? We only know that if these funds are released, it will not be until January, 2007. PUNS Survey information from May tells us that there are 241 adults with disabilities living with caregivers over the age of 80!! PUNS so far tells us that there are 4,091 people between the ages of 18 and 29 who have identified themselves as needing services. When and what will they have to transition to? Twenty-nine and still waiting to “transition”? What’s that all about? This year’s state budget does not even include the traditional funding for 100 new CILA residential openings. This is the fourth year that there has been no new funding for the Family Assistance Program and only a trickle of funding for the Home-Based Support Services Program. We cannot expect transition to exist without transition to SOMETHING. We cannot expect people to dream an adult dream
of inclusion and productivity if parents of school age children do not
understand how dysfunctional the
adult system is now. With the system so underfunded, the only folks getting
funded right now are people in crisis and labeled with very severe disabilities.
But, so should folks whose disabilities are “merely” moderate. So what do we
do? How do you become a part of the solution? How do you ensure your child a
real future? Big changes are needed. And they are needed now.
“But I don’t have the energy to do something big,” you say? You’re
right. You probably can’t do it alone. It’s a daunting task. But together
– now, there’s a concept – together we can make things happen. We You’re part of the problem.” Let’s Be
Clear… If you don’t advocate for adult services when your child is a minor
– you’ll have no right to complain when he is an adult. What Is
Your Nightmare?
Our
Toolbox for Change!
What You
Can Do!
What PUNS*
Tells Us So Far! The Waiting List
It’s Easy! It’s Satisfying! REALLY!! scroll past them to the task at hand and Whoops!
The deadline is past. Everyone knows that a personal contact often makes all the
difference when it comes to taking that “next step” in our advocacy efforts.
The Family Support Network is challenging itself to new levels of excellence by
making sure that every FSN member has that special someone who can nudge them to
that next step, a personal contact. We would like to invite you to join us by
volunteering to become a “Key Communicator.” It’s fun, it’s satisfying,
it’s VERY important, AND you will make new friends. A winning combination all
‘round!! • You will be provided with a list of
approximately a dozen Family Support Network members in your area. You can even
select people you already know! • As needs arise, we will ask you to make phone
calls to Family Support Network members on your list to inform them of key
issues and ask them to take action. You don’t even have to leave your home! • We will give you all the information you need
to inform your list and encourage their action. As you and other Key
Communicators spark your groups to action, imagine the impact we can have across
the state! Talk about making a difference and having a voice! • We will also ask you to help us keep your
list’s contact information current by notifying us when there are changes in
phone numbers, addresses, and e-mail information. • When you hear of new people interested in supporting the Family Support Network, sign them up so we can add them to our database. Yes, I want to be a “Key Communicator” for
the Family Support Network!! Name______________________________________________
Phone__________________ Street Address__________________________
City________________ Zip Code_________ E-mail
Address____________________________________________________________ Cut here and mail to the FSN, Or e-mail us at InTheKnow@familysupportnetwork.org.
For more information contact: Michele Westmaas at Michele@familysupportnetwork.org or 217-285-2301 or Dorelia Rivera-Martinez at Dorelia@familysupportnetwork.org or 847-791-2432 Will You Help? We Need You!!
New
Waivers – Will They Be What We Want? Important
decisions are being made! The Illinois Division of
Developmental Disabilities has begun the task of reviewing the Home and
Community Based Waiver that funds many important programs that support people
with developmental disabilities in Every state has an opportunity
to create a waiver program by making an application to United States Secretary
of Health and Human Services. If accepted, the federal government then
reimburses the state for HALF of the expense of the program. You can see why
waiver funding has become so important to the State of Every three years the federal
government demands that each state “re-apply” for its waiver AND have that
“re-application” approved! The re-application process is a burden and an opportunity. While we’re re-submitting the application anyway we have a chance to make changes and improvements. We can scrap the whole thing and start from scratch. We can start with what we have, keep what works, and modify what doesn’t. Self-advocates and families have some definite ideas about improvements that can be made, that must be made. Providers of services also have strong opinions. DHS staff have practical, financial, and legal concerns. And, of course, everyone’s ideas are not the same. There are brainstorming, collaborations, and yes, negotiations to be made. Most important, in the end, the Governor’s and the federal government’s approval must be won. The Family Support Network is at the table! A work group of over 20 people is currently reviewing numerous issues related to reauthorizing the waiver. Calling itself the “Waiver Re-application Committee”, the group includes self advocates, families, service providers, trade organizations, and DHS staff. There are some changes the Feds will be expecting us (requiring us) to make – like adopting a fiscal intermediary to handle the exchange of money between individuals and service providers (for in-home supports only). Other changes are up to us. And the possibilities seem endless… Besides just re-authorizing the adult waiver, we have the opportunity to create a new waiver for children. That complicates things even more – and makes the task that much harder. How do we make the children’s waiver and adult waiver compatible? How do we handle the transition from child to adult services? At what age do we begin coverage for children? What services should children and their families be offered? What do they need? How do we decide who is eligible? Is there an income cap or co-pays? Do we have one all-inclusive waiver, 2 waivers (adult and child), 2 waivers (home-based and residential), or 4 waivers (home-based child, residential child, home-based adult, and residential adult). How do we incorporate new ideas of self-determination and money-follows-the-person? How do we educate families, individuals, and service providers so that the system works for all of them? In all decisions, our goal is
to create powerful programs that work, that are flexible, that allow for
creative choices, that are person-directed, and empower participants to lead
full integrated lives in the communities of their choice. The In-Home Supports
Committee, also a subcommittee of the Statewide Advisory Council, has reviewed
the Home-Based Support Services Program and made recommendations which can be
viewed at http://www.familysupportnetwork.org/2006ihat.pdf. Your support and
recommendations are important. You can mail them to the Family Support Network
at Making a Difference One Day at a Time! We’re
Dreaming BIG! I have a dream that the day will come that the
FSN has a cadre of disability advocates in every corner of The Family Support Network is working on that dream!! This spring the Family Support Network held six One-Day Conferences on Support; one each in Jacksonville, Villa Park, Urbana, Mount Vernon, Melrose Park, and Libertyville. What do we do at these conferences? We talk about what we worry about. We talk about what we need. We talk about what is out there and what is missing. We talk about what we can do about it and get organized to make changes!! Will you join us? Or are you content to just complain? Do you care? Are you willing to take
responsibility for your future and the futures of people with disabilities in Join us at a One-Day Conference! Learn how to make a difference. Check out our
upcoming One-Day Conferences on our website at www.familysupportnetwork.org.
One-Day Conferences have been held all over the state bringing advocacy
training, information, and empowerment to people with disabilities and their
families! At each conference, participants come together in shared passion to
improve the situation in Don’t
see one in your area? Contact us! We’ll help you organize one. What are participants saying? “The most important thing that I learned was how to be a better advocate and that my voice matters… it needs to be heard!” Do you have burning needs, dreams, and fears that haven’t been heard? Do you want to make a difference? Do you want to be a part of the solution – but you just don’t know how?? Look for a One-Day Conference near you! Or better yet, start youradvocacy now by being the one who brings us to your area! Hosts are asked to find a place, help spread the word, and provide lunch. We do the rest! If you want to know how to find and support a conference host, call us! We’ll help! We are scheduling now for Fall and Winter 2006. Send Us Your E-Mail Address! E-mail is vital to our advocacy efforts. If you will share your e-mail address, we will be able to keep you up-to-date with new information as it happens. Please share your e-mail address with us at InTheKnow@familysupportnetwork.org. Thank you! First Year, Great Success!! The Family
Support Network has been busy growing new advocates to change the world. Spring
is a time for planting and fall is the time for harvest. But for STARS, we
planted the seeds in November, nurtured them for eight months, and we’ll
harvest our graduates in June! Eighteen applicants from all over the central and
southern region were chosen to participate. Imagine eighteen regular folks with
an itch to make a difference. Put them all together, train them up, introduce
them to other hardworking advocates, and you have a new grassroots network of
people who want to make a difference and know how to do it! At the Arc
of Illinois Annual Convention, Joe Caldwell from the Institute on Disability and
Human Development shared a quote from a parent of a child with a disability who
said, “That woman (Charlotte Cronin) from the Family Support Network can stand
up there scream, rant, and rave…” Now, with all the STARS graduates, “that
woman” will have reinforcements! These
eight months have given the STARS an opportunity to get deep inside the world of
disability advocacy and legislation. We’ve held monthly Saturday trainings in STARS have
had the honor of hearing from and meeting several experts in the field. Featured
speakers have included representatives of Equip for Equality, Illinois Council
on DD, the Institute on Disability and Human Development, and more. At the
conference and convention, STARS met with Sue Swenson, Executive Director of the
Arc of the All of the
STARS are regular citizens – family members or people with disabilities living
regular lives. Bringing their real experiences and passion to their advocacy is
very powerful in affecting systems change. Our vision for the STARS – this
group and future groups – is to develop a coalition of educated,
well-prepared, and well-connected grassroots advocates who are ready and able to
join the movement for change in In Fall
2006, the second STARS training will begin in the southern half of the city of Our
fearless leader, Charlotte, has shown true leadership by inspiring us to
"never say never." It is
said, “There is strength in numbers." I believe it is time for all of us
to come together and use our combined strengths to accomplish our common goals.
To achieve this, we must form our own ‘web’ of communication. We must
exchange ideas and plans for the betterment of all concerned. The days of
fighting our battles separately are over. We must unite! "May
Our Voices Never Be Silenced" Avery
The Honorable Barack Obama United
States Senator Washington
, In
these ongoing struggles, if I can be of support as a parent who is in the midst
of it all, please call on me. I can provide you with insight into the realities
for families and I can provide testimony when and if that is appropriate. First
and foremost, I am a mom doing what I can to prepare the world for my daughter
who must have full opportunities as an adult. I have 13 years to do good work.
Secondly, I am working as the Downstate Advocacy Coordinator of the Family
Support Network in I also
have a 14-year-old son in regular public education. So I see both sides of the
coin and want support for the education of all children. My current
fear is that citizens outside of the disability community, legislators, and
policymakers will see that there are programs on the books and funding to
support services for people with disabilities – and then they’ll think the
job is done. What they don’t see is how woefully under funded those programs
are. And how inappropriate some of them can be. And how difficult they can be
for families to access. What they don’t see is that families have to be broken
and poor before they can get support – and still then funding may not be there
for them. Our families and adults with disabilities need support while they are
intact before they break and before they lose all their financial resources. I know an In our own
family, I’ve had to be very cautious of the income I make. If I make too much,
I lose precious benefits. So I waited until I found a job that would make enough
to cover the loss of benefits. But, still, it’s a hard decision to work and
just break even or to stay home and have time for my child’s needs and get the
government benefits. I now see how we have come to have “welfare moms”. We
put people in very difficult situations by the way we structure our programs. We need a
Martin Luther King, Jr. for the disability community. This is the last minority
who hasn’t gotten full rights. There are people in state institutions who
could be living real lives in communities if there were funding to support them
(and that support would be much cheaper than the cost of the institution!).
People with disabilities don’t have a voice. Many of them can’t speak for
themselves for a variety of reasons. Parents try – but they are so busy just
surviving that they don’t have energy left to speak up. There are very
competent young (and old) adults with disabilities who “aren’t disabled
enough” to get support but who are “too disabled” to work and live
successfully on their own. These folks are lost in the cracks of society. We
have to fill those cracks. How can we
sit by while so many people are simply forgotten or ignored? And it’s all due
to money -- Which of course is indicative of our social views of disability. How
can anyone ignore disability? It’s the only minority group that any one of us
can become a member of against our wishes and without a moment’s notice. As we
age, it’s likely that all of us will develop some sort For some
powerful insight into the disability issues – visit Kathie Snow’s website:
www.disabilityisnatural.com. Call me. I met you in Michele
Westmaas Pittsfield
,
One of the
most exciting and inspiring things the Family Support Network gets to do is work
with advocates who are just learning to use their voices to advocate for
themselves and their families! This year
the Family Support Network had a chance to do just that as we worked with the
Project for Family Support 360 in The
Project for Family Support 360 is a collaborative project of the Institute on
Disability and Human Development, Spanish-speaking
families in This
winter, the Family Support Network provided three evening trainings to over
thirty family members on how to advocate for themselves! The trainings
culminated with a trip to The day
was a hit! As Senator Martin Sandoval said to the group at one of the previous
trainings, “I need my soldiers behind me at the capitol. You are those
soldiers”. Well, his “soldiers” went and succeeded! “I am very happy to
see a project like this come to the 12th Legislative District,” Senator
Sandoval said. “Families of children with developmental disabilities need to
have somewhere to go that will provide them all the services in one place
without them having to search or travel away from their community.” Senator
Sandoval also said that our friend, Beth Lacey, is a force of nature! The
members of the 360 Project have nicknamed her “The Hurricane”! Beth is the
Executive Director of Community Support Services and just one part of the
wonderful team that shows us what advocacy, hard work, and stubbornness can do! The 360
Project is becoming a realization because of dedicated people along the way that
made it happen! People like Beth Lacey and CSS, the UIC folks, the families of |
