Family
Support Network of Illinois
Family
Support Network of IllinoisFor a PDF version click HERE
Family Support Network Launches Fundraising Campaign!!
It's
All About Money!
We
need to start supporting ourselves! The Family Support Network announces the
kickoff of a campaign to raise $30,000.
The
roots of the Family Support Network are with the Illinois Council on
Developmental Disabilities (ICDD). It
was through their vision and initiative that the Family Assistance and
Home-Based Support Services Programs were created in law.
The Council also saw the need for a grass roots advocacy organization to
work to see the programs fully funded and implemented. That's us! Since 1991,
ICDD has generously funded us six times ($50,000 each). Just this week, we have
heard that we will receive another $25,000 for next year!
After that we will need to be on our own.
It is time for them to let us go. Time
for us to grow up and get pushed out of the nest!
What
do we do?
We
educate people with disabilities and their families.
We hold conferences, big and small.
Call us if you need a speaker! We
publish this newsletter and our website (www.familysupportnetwork.org, check it
out!). Our mailing list now totals almost 3900 individuals.
We're producing a video and a new brochure.
We educate policymakers. We
go to all sorts of meetings. We go
as family members, because no one knows what we need like we do.
We act as a resource and try to direct people to services. We try to let you know what's going on and what you might
want to do about it.
We
have four staff people, all of us moms of kids with disabilities.
We all work out of our homes in between loads of laundry.
Three of us work part time. We're
paddling as fast as we can on your behalf.
What
have we achieved?
For
example, the many times we were "there" to say, "Hey wait a
minute, that doesn't work for families!"
Or the many phone calls when we were able to tell someone who to call
when they needed help.
Our new ICDD grant will continue to provide enough funding for our
telephone. But, we need funding for expenses such as office supplies and travel.
Our computers are antiques and don't "talk" to each other well.
Because we live all over the state we have to be able to communicate by
e-mail. This has become generally very difficult and sometimes impossible. We need to find a way to update and upgrade our computers.
We
have struggled.
How
do we raise money? We've never
wanted to ask for dues or membership fees.
We know that the folks who need us the most are often the folks who can
least afford to pay dues. We want
everyone to feel welcome and heard in the Family Support Network.
We've
asked for donations. Many people have given generously.
But, frankly, it hasn't added up to substantial money.
For instance, we have received $445 in donations since the first of this
year. Every dollar of that is so
valuable and wonderful. Thanks to
each and every one who has supported us with your dollars.
We've
got our 501(c)3!!!
Yes,
it's true. After lots of hard work
and dedication, the Family Support Network was awarded
"not-for-profit" status by the IRS this summer. That means that your
donations can be deducted from your income when figuring your taxes!
So we are asking for your financial support on behalf of the Family Support Network and the goals that we share. We know that money is tight for people with disabilities and their families. We can ask only that you consider your ability to contribute financially and support us if you can. We know that we have made a difference and that we still have lots of work ahead of us. Write a check, and stick it in the mailbox. It's easy! Thanks!!
Family
Opportunity Act of 2000
Have
You Contacted Your Congressman?
We
still desperately need your help in advocating for this important legislation.
In our last newsletter, we provided information about this bill and how
it could impact individuals with disabilities and their families.
Our time is short as this should come to a vote in October.
We must reach our legislators and let them know this is important to us.
The
Family Opportunity Act of 2000, S. 2274 was introduced in the Senate by Senator
Charles Grassley (R-Iowa) and Senator Ted Kennedy (D-Mass.) on March 22.
There are currently 75 co-sponsors from both parties.
Illinois Senator Richard Durbin has signed on as a co-sponsor.
Peter Fitzgerald has not.
It was introduced in the House as H.R. 4825 on July 12 and currently has 113 co-sponsors from both sides of the aisle. Illinois House members co-sponsoring the bill at this time include Congressmen Bobby Rush, Rod Blagojevich, Jan Schakowsky, Jerry Costello and John Shimkus.
If
you have questions about this legislation, there are several Internet sites that
can help. You can look up the
information we provided in our last newsletter at www.familysupportnetwork.org
or you can also look at www.thearc.org and www.thomas.loc.gov.
Once again, it's up to us to ask for what we need.
Get your phones, pens, keyboards or vehicles ready to go!
What Did Our Mothers Teach Us?
Have
You Thanked Governor Ryan and Your State Legislators?
This
summer and fall, 143 adults and 370 children are being enrolled in the
Home-Based Support Services and Family Assistance Programs.
These are wonderful increases and we need to say THANKS!!
Remember,
we still have families and individuals in the applicant pool who need these
services. We will continue to need
the support of our Legislators and we accomplish this through developing
relationships and communicating our concerns and celebrations.
Please take a minute to express your appreciation for their efforts on
our behalf.
How
About a Thank You Note?
2nd
Task Force Retreat Focuses on Strategic Plan Suggestions
We
did it again! On Sunday, August 13, fifty-two dedicated, hard-working men and
women made the trek to Starved Rock Lodge in Utica for the second of three
retreats for the Family Leadership and Systems Change Project. We learned about
exciting new projects and continued our work begun in March.
Task
force members have been working in their Network teams since March.
Nancy Brown led the group in sharing their successes and challenges over
the last five months. Some of the successes reported by teams included the
following.
*
Found or created resource lists/directories
*
Planned school district in-service on family support
*
Submitted proposal to speak at the Illinois School Social Work State Conference
*
*
Received 3 year grant to train school personnel on person-centered planning
*
Attended Network Advisory Council meetings
Teams
had several opportunities throughout the retreat to discuss and plan for their
continuing strategies toward their respective team goals.
Mark
Doyle of Everyone is Welcome discussed the
plans of his organization to build an information and resource network
based on the internet. One of the biggest concerns expressed at the March
Retreat was the inability of people with disabilities or their loved ones to
identify resources for supports and services.
Mark's project is designed to do that.
On
Monday, the group listened as Frank Shepke of the Respite Coalition outlined
their history and concerns as well as their agenda for the future.
An article with additional information on the Respite Coalition has been
included in this newsletter.
We
were then joined by Jeri Johnson of DHS who explained "Medicaid
Waiver". As confusing as
"waiver" programs are, they fund many of the residential and
vocational service programs available to adults with disabilities in Illinois.
If we want to impact services for people with disabilities, we need to
understand their "funding streams".
Plans
for the FSN One Day Conferences were discussed. Part of the day will be spent on background regarding family
support, discussion of what good family support looks like, and presenting
information on family support in Illinois.
The task force decided that there should also be time allotted for
dialogue with local legislators. Task force team members will invite their own
legislators to the conference in their area.
This could provide a great opportunity to share our stories, concerns,
and priorities and ask for the support of our elected officials in expanding the
programs we need!
Maybe
the most powerful moment of the retreat was the presence of Melissa Wright,
Associate Director for the Office of Developmental Disabilities.
Melissa invited input into, took questions and answered concerns
regarding the proposed Strategic Plan for the Developmental Disabilities Service
System. The Strategic Plan is being
designed to guide the Office of Developmental Disabilities over the next three
years.
Our
retreat concluded with Network Teams meeting to finalize their plans for the
next several months and choose a representative to attend the "Family
Support - Hot & Spicy" National Gathering in San Antonio.
Once again, our retreat provided us with information and inspiration to
continue working toward the goals we set in March.
Thank
you, Task Force members and special guests, for your time and dedication!
Local
Area Networks for Children and Adolescents
By
Shonda Rummel, Mom
As
many of you know, it is very difficult at times to provide financially for all
of the services and supplies our children need. There are many things that
families who have not been touched by a disability take for granted. These are
things such as: not worrying about buying diapers after your child is 2 years
old, purchasing special safety devices to childproof your home for an older,
larger and stronger child, paying extra for child care or not working at all
because many providers just don't know how to work with or handle your child,
etc. Community Flex-Funds can help
with some of these things.
Community
Flex-Funds (or CFF for purposes of this article) for wraparound plans are
available through your local LAN (Local Area Network for Children and
Adolescents). There are 62 LANs in the state of Illinois.
CFF is a funding pool that is only to be used when all other resources
and efforts to secure those resources have been exhausted.
Flex funds should not be relied on to be support permanent, long-term
services. The idea of CFF is to
provide a timely plan to obtain and maintain services and items required for the
child with disabilities and his/her family.
The
wraparound planning process addresses all aspects of the family's life
"domains" (physical, family attachment, safety, socialization,
cultural and spiritual, emotional/psychological, health ,and
educational/vocational). CFF wraparound planning focuses on the strengths and
needs of each individual family and what is needed for the family to become
stronger. One of the best things about CFF is that in general there are no
income guidelines for families to qualify and you may reapply if you need to
after one year. For a plan under
$200, a family can fill out about six pages and request the funds. These six
pages primarily consist of "name, address and phone number" over and
over again. Any plan over $200 takes quite a bit more paperwork, but it is worth
the time. It is similar to an IEP
(Individualized Education Plan) in ideology. Some LANs have limits on the amount
of money that can be requested, so you would have to check that out in your own
LAN.
Let
me give you a little information about myself and how I found out about CFF. I
am a mother of three. My youngest child is 8 years old and was diagnosed with
"Severe Autism" when he was two. Since that time he has been diagnosed
with ADHD and Seizure disorder also. When he was in preschool, his behaviors
started to escalate and he required behavior modification. After one visit with
the psychiatrist we found that my husband's insurance would only cover $10 of
each visit. I don't know about any of you, but that was way out of line with
what we could afford. So I started spending hours on end calling every agency in
the book to find help to continue the therapy. Frustration mounted and
depression set in as the weeks drug on, without any hope of finding assistance
to pay the bills that were mounting. The frustration and depression lifted when,
as a last resort, I made a call to a small office in my neighborhood where I
volunteered. I was told that there was a funding source
that could probably help - CFF. It
was amazing to me that many of the agencies I had called in the weeks prior had
knowledge of this funding, but did not mention it.
Unfortunately,
CFF could not help pay for the behavior modification that we had already
attained, but it could help with future appointments and other things our family
needed. So here is what we got help with. My son was still not potty trained so
we requested a year's supply of diapers to send to school, computer hardware
similar to what he used at school (Big Mac Switches) to make our home computer
accessible to him, computer software similar to that which he used at school, a
family membership to the YMCA, and a years supply of DMG, B6 and Magnesium.
There were other things that we requested, but in our LAN there is a $2,500
limit on the plans per year per family. We did not get the behavior modification
in because it took us some time to get everything completed and a fight with our
insurance company showed to be fruitful. This process took us about a month and
a half to complete. Plans that can be implemented for $200 or less can be
completed in significantly less time.
Other
examples of things that can be paid for through CFF are mentoring, respite care,
day camps, and other recreational or educational activities that cannot be paid
for by other resources. Families have attained safety equipment for their home,
car seats for older children, theatrical classes, art classes, swing sets,
safety locks, educational toys, etc. The options and ideas are wide open.
Requests need not be common. If you think that what your child really needs is
something that you have dreamed up in your own mind and the only way to
get it is to make it, you can request the supplies to make it (of course you
might need to explain it a little).
This
process is not difficult, but it can be time consuming. The wraparound planning
process requires a few things. The first requirement is that the child has some
kind of disability or diagnosis. The second requirement is that there must be a
"family team" assembled and working on the plan together. This doesn't
mean that the team has to meet physically in the same room to work on the plan,
though signatures of the team members must be on the plan when it is submitted.
The
family team is comprised of people who know and work with the child (family,
teacher, friends of the family, friends of the child, sitters, the clergy,
basically anyone who the family wants involved) a facilitator and the child if
he/she is old enough to give input. There is nothing worse than making plans for
someone to do something that they really don't want to do. So please allow the
child input if at all possible (i.e. don't put your son in dance when all he
wants to do is play basketball. Don't laugh! Something just as ridiculous has happened). The idea of the
family team is that these are people who in some way will remain involved with
the child.
I
mentioned the facilitator. There should be at least one person in each LAN who
has been trained to facilitate wraparounds. It is not a requirement to use a
trained facilitator but it will make the process easier. The facilitator should
not charge the family for helping with the plan. If you need help finding a
facilitator in your area you may try calling Illinois Federation of Families at
1-800-871-8400.
Once
the paperwork is completed, the plan must be submitted to the case review team
for approval. An appointment will
be made for the team to look at the plan. Sometimes
the review team will have questions about the specific items on the plan or just
need clarification. In our area, the case review team is comprised of several
representatives from local social service agencies as well as the State Board of
Education (ISBE) and DCFS. Don't let those four letters (DCFS) scare you away. DCFS and
ISBE funds are used, but they are not there to point fingers or get into your
family business. More or less, they are watching their investment. In my LAN,
the review team will ask for information regarding the child and family. It is a
very informal meeting. Wraparound plans can be approved in whole or in part.
In
my LAN it takes about two weeks for the checks to be written for approved plans.
The checks will be sent directly to the providers, agencies, people or stores
listed, or possibly the facilitator or LAN representative, to purchase requested
items. Exact dollar amounts for services or items must be written out and
submitted, as well as names and addresses for those to be paid.
Now
that you have the long and the short of it, you probably want to know who to
contact to get started. As I said earlier there are 62 LANs in Illinois, so my
best suggestion is to contact your local DCFS office and ask to speak with their
LAN liaison. This person should be able to direct you to those who handle CFF in
your area. If you are unsuccessful in contacting someone or find them unhelpful,
please feel free to contact me, Shonda Rummel, by e-mail at: Data22trek@hotmail.com
and I will do my best to get you linked to an advocate and facilitator in your
area!
The
mission of the Illinois Respite Coalition is to increase public awareness and
advocacy to support respite providers and the needs of families they serve
across the life span. Formed in
1998 by a group of parents and concerned respite providers, the Illinois Respite
Coalition is working to improve the respite system throughout the state of
Illinois.
The
goals of the Illinois Respite Coalition are:
*
Provide information and training to families, respite providers and others
involved in respite services.
*
Increase public awareness and networking regarding respite services and
benefits.
*
Advocate for family friendly public policy.
*
Maximize funding.
*
Increase resources related to respite services.
The
Coalition meets quarterly at rotating sites across the state.
If you are interested in joining the Illinois Respite Coalition or have
questions, please contact Frank Shepke at Crittenton Care and Counseling Center,
1201 First Street, Peoria, IL 61705,
phone: 309-672-2239.
Office
of Developmental Disabilities
The
first meeting of the newly structured Central Advisory Council will take place
in October, 2000. Secretary Linda
Renee Baker and Associate Director Melissa Wright announced upcoming changes to
the council structure in July, citing their belief that the new structure will
strengthen relationships and services within the network boundaries.
The
new Central Advisory Council will be comprised of consumer, family, and provider
representatives, eliminating the separate council structure for consumers and
providers. Each Network Advisory
Council is charged with selecting a family representative and a provider
representative as well as alternates to represent their council participants at
Statewide Advisory Council meetings. Associate
Director Wright is seeking nominations for the consumer representatives from
facilities and People First as well as the Network Advisory Councils.
She will then select the consumer representatives as well as a number of
at-large representatives to ensure equal representation of all facets of the
developmental disabilities service system.
Representatives
of each network area will be charged with attending all meetings, which will be
held quarterly at sites scattered throughout the state.
They will attend with the purpose of relaying the agenda of their
respective areas and then share the results of each meeting with the advisory
council participants they represent.
If
you are interested in participating as a representative of your Network Advisory
Council, contact your Network Facilitator to find out how representatives are
being selected in your area.
A
new column for our newsletter! We
all have questions we'd like to ask but are afraid to look "stupid".
We also know that the only "stupid" questions are the ones we
don't ask. So here's your chance! Send
us your question(s) and we will try our best to find the answers and publish
them here. They will be published
anonymously, so have no fear! You
may call, e-mail or write us with your questions.
Please send them to Charlotte Cronin, 309-693-8981, e-mail charlottecronin@home.com,
5739 W. Martindale Lane, Peoria, IL 61615.
We look forward to hearing from you!
Question:
What is 72D? 72D is a state funded program that provides direct staff
support in the home to enable a child who is at significant risk of out-of-home
placement to continue to live with his or her family.
It's intended to be much more than a Respite program, and is designed for children with major challenges. Many (but not all) of the children in the program have autism; many of the families are single-parent families. A community agency is funded by the Office of Developmental Disabilities to send a worker into the home, usually for about 15 hours a week, to not only provide care for the child but also to develop the child's skills and to mentor the parents so that they can improve their ability to care for the child. This often involves hiring a behavior specialist to put together a treatment plan.
In many cases, the program has made the difference in enabling the family to keep their son or daughter at home. For more information or to find out if you are eligible for these services, contact your local Pre-Admission Screening (PAS) Agent. If you don't know the name of your local PAS Agent you can refer to the Summer 2000 Family Support Network newsletter in print or at our website (http://www.familysupportnetwork.org).
Chief
Justice Earl Warren
!Este
Boletin Ahora Esta Disponible En Espanol!
Special
Edition Hispanic Version of the FSN Newsletter Now Available!
A
compilation of the most important articles from our latest newsletters has
been translated and is available for individuals and/or groups that need
this information in Spanish. If you
or someone you know would like copies, please contact Charlotte at 309-693-8981
or by e-mail at CharlotteCronin@home.com. We
are anxious to share this with anyone who might have an interest in the issues
we address through our newsletter! Thanks
for your help!
