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March
2006 Newsletter
For a complete PDF version
click Here
Creating
a Waiver for Children
- The Time is NOW!! We Need YOUR Help!
Breaking news is on the horizon for families of children
with disabilities. The important work of the Autism Task Force has produced a ground swell of momentum in the
Illinois General Assembly to create a waiver to provide
support to families of children with disabilities in Illinois.
In the past the only programs providing support for
children with disabilities in their family homes have been the Family Assistance Program, a small program
commonly referred to as “72D”, and grant funded programs through local service providers.
The Family Assistance Program has had no new funding
to enroll families in over 3 years. “72D” supports about 400 families of children with severe behavioral issues.
Locally funded programs, typically providing respite services, are far too often non-existent or stretched too
thin.
A new children’s
waiver could include supports such as Applied Behavioral Analysis Therapy, parent education,
social skills training, therapies not covered by insurance, environmental modifications to the home, transition
services, crisis services, and assistive technology. We are advocating for the enrollment of 3350 children
over a 3-year period (800 the first year, +950 more the second year, +1600 more the third year). Each child
would have access to supports and services valued at up to 2.5 times SSI, which equals $18,090 per child per
year. All expenditures would be eligible for federal Medicaid matching, which means the Federal government
would reimburse Illinois half of all expenditures.
The moment is now! The Autism Task Force Report has
provided the momentum and information we need. It is up to us to work together to bring their work to fruition.
The needs of children with various disabilities are far more alike than different. All families of children with
significant disabilities have dramatic stories of need. We must work together to encourage our legislators to create
a new children’s waiver supporting children with all disabilities.
The Children’s Waiver Concept proposed by The Autism Society, The Arc of Illinois, and The Family Support
Network can be reviewed at
http://www.thearcofil.org/document.asp?did=450.
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What
is a Waiver? Why Is It Important to Us?
Many services for people with developmental
disabilities are now being funded with a mix of funding from the State of
Illinois
and the Federal Government. The state pays for the services and the Feds
reimburse 50 cents for every dollar spent. In other words, they each pay half.
This is done through what is really a federal insurance program for low-income
people called Medicaid. Most people with severe disabilities are low income, so
they qualify.
States need to “capture” as much Federal
funding as possible to support services. Being able to “capture” these
federal dollars is very important and makes states such as
Illinois
much more willing to create and expand programs and services.
When Medicaid was passed into law in the 1960’s
it only paid for people to be in hospitals and nursing homes. Eventually
Congress realized that hospitals and nursing home were very expensive and many
people didn’t want or need to be in them. But, they were stuck using them as
there were no alternatives. Congress passed a law allowing the Secretary of the
U.S. Department of Health and Human Services to “waive” the rules in certain
circumstances. States have to design services, make specific application, and
get approval to waive the rules within those programs. States and participants
then have to live by the rules and guidelines the Feds approved.
“Waivers” allow states to create programs that
allow a lot of services in community settings such as group homes, the
Home-Based Support Services program, and if we’re persistent, a new
children’s waiver.
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The
Autism Task Force Report:
My
Loved One Doesn’t Have Autism… So.. Why Do I Care??
The
challenges of people with disabilities are more alike than different.
The Autism Task Force, made up of families, professionals and DHS staff, worked
for two years to create a report to the Illinois General Assembly on the
challenges of raising a family member with Autism in
Illinois
. The thirty-two page report (http://www.illinoislifespan.org/publications/document.asp?did=442)
was presented by DHS to the Governor and General Assembly on Sept. 1, 2005. It
is an incredibly important milestone for people with Autism and for ALL people
with developmental disabilities in
Illinois
.
Recommendations contained within the report include but are not limited to:
•
Creation of a Children’s Waiver,
•
Supports be available 24 hours a day, 7 days a week, across the lifespan, and in
all geographic areas,
•
Changes in the current waiver program to allow for maximum use of Federal
Medicaid matching dollars,
•
An increase in services provided by the waiver to include an array of family
friendly services such as respite, parent education, social skills training,
therapies not covered by insurance, environmental modifications to the home,
transition services, crisis services, assistive technology, and Applied
Behavioral Analysis Therapy,
•
Greater focus on appropriate assessment strategies, “best practices”,
transition services,
community-based
services, and home-based services,
•
Family and person centered supports provided along a continuum tailored to
individual need and able to adapt to personal or chronological development,
•
Mandated insurance coverage for Autism Spectrum Disorder (and similar
conditions),
•
Establishing outreach, education, and networking efforts as well as greater
collaboration and communication among all agencies and service providers to
create a seamless system in which
•
informed families can make choices and adequately navigate their way,
•
Elimination of the IQ requirement for services and focus on “Activities of
Daily Living” sometimes referred to as ADLs. Many people with Autism and other
disabilities such as Cerebral Palsy have IQs over 70, the current maximum for
waiver services. This causes some people with VERY challenging disabilities to
“fall through the cracks” of services.
In
addition, the report contains sections related to an array of other issues such
as education and adult employment. The issues are too vast and complex to
summarize here but can be read in detail at the website listed above.
Momentum is building!
Since the presentation of the report at the beginning of September, there have
been an unprecedented number of Illinois House and Senate Hearings focusing on
its findings. The momentum is very exciting to create a waiver providing
services for children with developmental disabilities. With your help this
waiver can become a reality! The report of the Autism Task Force has created a
roadmap for change. Please join us in educating
our
policymakers about its importance for all people with developmental disabilities
in
Illinois
!
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Lobby
Day at the Capitol
Wednesday,
March 22nd
Join
Us in the Stratton Cafeteria for Handouts, Help,
and
Moral Support!!!
8:30am
to ???
www.familysupportnetwork.org
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We
Need Your Help Now!!
Tell
your story: Why are these programs important to you?
Tell
your personal story. Write letters to the Governor, Secretary Adams, Director
Johnson and the legislators listed below. A sample letter can be found on our
website. Visit your legislator in his or her home district. Make sure he gets to
meet your family member with a disability. We can hook you up with other
families in your district. We can also provide you with tips and materials to
make sure you’re comfortable.
Copy
this alert and share it with fellow advocates. We need to speak in a united
voice - the more people who know, the louder our voice. Send us your e-mail
address. E-mail allows us to communicate with you immediately and for free!
E-mail us at teresa@familysupportnetwork.org.
Check
out our website regularly. Our website will be updated with new information
regarding these changes and you will be able to download information and
handouts. www.familysupportnetwork.org.
Mail Your Letters To:
The
Governor, the Secretary of DHS, and the Director of the Dept. of DD:
The
Honorable Rod Blagojevich
207
State House
Springfield
,
IL
62706
“Dear
Governor Blagojevich”
Carol
L. Adams, Secretary
Department
of Human Services
100 S. Grand Ave. East
Springfield
,
IL
62762
“Dear
Secretary Adams”
Jeri
Johnson, Director
Department
of Human Services
Division
of Developmental Disabilities
100 S. Grand Ave.
, 2nd Floor
Springfield
,
IL
62762
“Dear
Director Johnson”
Your
State Legislators:
If
you don’t know who they are, call us or look up their names and addresses at:
http://www.elections.state.il.us/DistrictLocator/SelectSearchType.aspx.
These Key Senators:
The
Honorable Emil Jones
President
of the Senate,
507 West 111th Street
Chicago
,
IL
60628
“Dear
Senator Jones”
The
Honorable Frank Watson
Senate
Minority Leader
1355A
S. State Rte 127
Greenville
,
IL
62246
“Dear
Senator Watson”
These
Key Representatives:
The
Honorable Mike Madigan
Speaker
of the House
6500 S. Pulaski Rd.
Chicago
,
IL
60629
“Dear
Speaker Madigan”
The
Honorable Tom Cross
House
Republican Leader
530 W. Lockport St., Ste 204
Plainfield
,
IL
60544
“Dear
Leader Cross”
The
Honorable Lee Daniels
Chairperson,
Disabilities and Mental
Illness
Committee
105 S. York Rd., Ste 550
Elmhurst
,
IL
60126
“Dear
Representative Daniels”
Include
a picture!
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One
Family’s Story
“My
wife is burnt out – we have been doing this for 18 years. She can’t keep up
with this at the same rate. She lost her career. I lost my career. All of our
dreams are just stopped. Everything is stopped.
If we can get a lot of these things taken care of, it will take a lot of the
burden off of me to do other things that need to be done. I’m not talking
about wants. I’m talking about needs. Serious business. We’re trying to
develop their own space by adding on to the house. We’re trying to make an
apartment for the girls so we can be right here as they adapt to an independent
life style. Dental work, medicines that they have to have... I spend all my
money on things like that for them. Insurance does not cover everything. We have
very limited resources to tap into to make ends meet at times. My account is
drained. When they need things, we’re picking up and taking care of it -- but
we can’t put back in.”
Larry and Pam Bruce are parents to three adult children: Julian, Paris, and
Paige. Unlike their older brother, 18-year-old Paige and Paris still rely on
their parents for most of their personal needs. The twin girls were born at 32
weeks with significant respiratory issues diagnosed as Kartagener syndrome. Both
require daily respiratory therapy and take the strongest oral antibiotic
prophylactically. In addition to being medically fragile, both have
developmental delays and motor issues including fused bones in joints and low
muscle tone.
The Bruce’s have been trying to find some support to make their home more
physically accessible to the girls, increasing their independence. For example,
Paris
can care for her own needs in the shower, but she can’t get in and out
because of the physical restrictions of the non-accessible tub. Something as
simple as an accessible bathroom would allow
Paris
the dignity of bathing independently.
The
Bruces need support! Let’s “Do the Right Thing”.
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“Do
the Right Thing Coalition" Needs Unaddressed!!
Governor’s
Proposed Budget Includes No Funding for New or Expanded Services!
On
February 15th, Governor Rod Blagojevich announced his proposal for the Illinois
budget year beginning July 1, 2006 and ending June 30, 2007, often referred to
as the FY 2007 Budget for the year it ends in. Advocates were disappointed to
discover that NO NEW FUNDING had been included for new or expanded services for
people with developmental disabilities.
Advocates are asking for increases in funding that would not only allow current
services to keep up with the cost of living, but provide new services for people
who are currently underserved or not receiving services at all!
Join the “Do the Right Thing” Coalition in asking for "Don't Say No To
People with Disabilities and their Families!"
We
are asking for enough funding for:
1.
5% Enhancement for Wages & Rates
2.
New enrollment of 300 people in Community Integrated Living Arrangements (Group
homes and in home
services)
Increase Community Supports & Services
3.
New enrollment of 400 people in the Home-Based Support Services Program
4.
New enrollment of 300 children in the Family Assistance Program
5.
And funding to create a new waiver for children with developmental disabilities
and/or Autism.
Did
you know that the newest PUNS data show 204 people over the age of 80 caring for
someone with a developmental disability? Think about it.
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Coming
Soon to a Location Near You… One-Day Conferences on Support!
The Family Support Network has a tradition of providing One-Day Conferences all
around
Illinois
. With the help of our new advocacy coordinators, Dorelia and Michele, we are
now able to reach far and wide to expand our grassroots efforts!
This month we have co-hosted sponsored conferences in Villa Park and
Jacksonville
. On March 18th, we will be co-hosting a conference with PACE-Urbana CIL in
Urbana
. Plans are also in the works for One-Day Conferences in Hillside and
Mt.
Vernon
. For details and printable brochures please check out our website at
http://www.familysupportnetwork.org
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 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 our policymakers and an invited legislator.
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!!
Watch for upcoming conferences in places like
Mt.
Vernon
, Melrose Park, Pittsfield
, and… hmmm… maybe your town!!
If you would like to sponsor a One-Day Conference in your area, let us know. If
you sponsor it, we will come! And families across the state will be empowered to
advocate for their own needs!
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."
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E-mail
- Send
Us Your E-Mail Address!
E-mail
is a critical component of our advocacy efforts. Help us update and expand our
advocacy efforts by moving into the Information Age! We need your e-mail
addresses more than ever. The Family Support Network is made up of over 4700
members statewide. But we only have about 1000 in our e-mail lists. Being able
to communicate by e-mail is invaluable. We can contact you quickly and cheaply
… FREE!!
When we organize our advocacy alerts, the first thing we do is compose an
e-mail. We can’t afford to do a US Post Office mailing whenever we want to. It
costs us over $1100 in postage alone; it’s labor intensive and slow.
E-mail also allows us to share information about conferences, legislative
action, and more. We promise not to send too much. Send your updated information
to Teresa@familysupportnetwork.org. Thanks!
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FSN
Welcomes New Advocacy Coordinators!
The Family Support Network is excited to introduce
two new members of our advocacy team! Michele Westmaas of
Pittsfield
and Dorelia Rivera-Martinez from
Melrose Park
are our new Advocacy Coordinators. They have been with us since November and
are busy “getting up to
speed”. Dorelia and Michele are available to do “One-Day Conferences” in
your community, educate on “best practices” to your local advocacy groups,
large and small. They will also be your connection to what is happening on a
statewide level with our advocacy efforts!
Michele
Westmaas, Downstate Coordinator
308
W. Jefferson St.
,
Pittsfield
,
IL
62363
michele@familysupportnetwork.org
217-285-2301
Eight years ago, I was a family childcare provider, a teacher, and mother to a
delightful kindergarten son. State legislation was my least favorite subject!
Now, I am eager to understand the ins and outs of disability policy and the
who’s who of our legislature in order to be an
effective advocate for people with disabilities.
My daughter, Aubrie, was born 8 years ago with CHARGE Syndrome. Through these
years of learning about her many challenges and following her CHARGE peers as
they reach adulthood and find limited opportunities, I have come to realize the
importance of Family Support and advocacy!
Our family was one of the fortunate ones to be selected for the Family
Assistance Program shortly after Aubrie’s birth. What a blessing! But what a
shame that there is not enough funding to adequately support all families in
need.
By working together to develop a grassroots network, by informing and empowering
all families and persons with disabilities, we can make changes to policies and
funding so that all of our needs are met in a way that works for each of our
unique families.
I distinctly recall a moment in my home with an advocate who was helping us to
navigate the Early Intervention system. I said to him, “I want to be you when
I grow up.” Since then, I have taken every opportunity to learn more about the
system and to encourage and assist others in their struggles.
My family is a part of a large worldwide CHARGE family via the Internet. The
invisible support of that family has been invaluable to me as I face the
obstacles and challenges on our path through what we affectionately call “CHARGEland”.
What has been missing for me is a faceto-face connection with people in my
geographical world. We need to support and empower one another to make changes
here – and now. The ripple effect of changes being made by people across
geography will make a difference in the world at large. We are on the cusp of
great changes in
Illinois
. What a remarkable time to be joining the Family Support Network!
"IF YOU DO NOT FIND ME AT HOME ACCEPTING THE THINGS I CANNOT
CHANGE, I AM PROBABLY OUT CHANGING THE THINGS I CANNOT ACCEPT."
Dorelia
Rivera-Martinez, Upstate Coordinator
800
Sherman St.
,
Melrose Park
,
IL
60160
dorelia@familysupportnetwork.org
847-791-2432
Mom, wife, daughter, sister, friend, aunt, U.S.
Army veteran, teacher, volunteer and now an advocate for all those with
developmental disabilities and their families!
Lots of hats, one person! Born February 24, 1974, to two loving parents, Jose
& Estela Rivera, I am blessed with one daughter, Kayla (2), and a wonderful
husband, Carlos, a UPS Sales Manager in Oak Brook. I’m also blessed with three
brothers, two sisters-in-law as well as two nieces and two nephews. In the last
few years, I’ve worked in Early Intervention (children from birth to three),
an experience that has been highly rewarding and has led me to pursue my Masters
in Child Development at the esteemed Erikson Institute in
Chicago
. In my spare time, I love to read, dance, volunteer, play, learn & TRAVEL!
One grand chapter in my life has been “settling down!” After traveling,
military, and volunteering, I’m now married to a magnificent, devout, loyal,
supportive man whose patience with “my next big idea” never ceases to amaze
me.
Kayla is one of my inspirations for doing all that I do for and with families! I
would love for you to meet Kayla at www.carepages.com; her page name is “KaylasWorld”!
Kayla was recently diagnosed with a rare congenital syndrome called NOMID.
Often, it’s misdiagnosed with lupus or juvenile rheumatoid arthritis. The
symptoms are periodic spiking fevers, an intermittent hived rash, joint pain,
swelling, and progressive hearing and vision loss.
It’s taken up a bit of our lives in the last year or so. She is treated at the
National Institutes of Health in D.C., where all of the other 22 diagnosed kids
are seen as well! We also travel to Children’s Hospital in
Pittsburgh
for her vision. We know there are so many more children that are misdiagnosed.
Kayla is the youngest to have been diagnosed at 15 months.
Of course, we have MANY people to be thankful for in our lives. We wouldn’t
have gotten this far without them -- our families, our friends, my professors,
my advisor, Linda, and Dr. ANDERSON- her pediatrician, the BEST! Between their
support and our own advocacy as parents, Kayla is a vibrant, verbal, active,
loving, huggable two-yearold! Without them, I wouldn’t be sitting here today
ready and able to take on this VERY important position as an Advocacy
Coordinator with the Family Support Network! I’m grateful for the opportunity
to make and impact changes in
the lives of children and adults!
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