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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 · We’re BACK!! The FSN and Arc of Illinois Form Alliance for the Future! ·
Illinois
Life Span Project – Information Online for Families ·
Job Opportunity – Enthusiastic
Advocate Desired!! ·
PUNS
– Prioritization of Unmet Need for Services – Victory and Confusion ·
DD
Definition of Eligibility for Services ·
Just
What Are Pre-Admission Screening Agencies and What Do They Do? ·
Service Coordination
Agencies – Phone Numbers ·
Help Us
Share the Family Support Message – Host a Saturday One-Day Conference for the
FSN!
The
FSN and Arc of Illinois Form Alliance for the Future! For
more than fourteen years, the Family Support Network (FSN) has been advocating
for home and community-based supports and services for people with disabilities
in Illinois. We’ve made great progress. Our
advocacy efforts have lead to doubled enrollment in the Family Assistance and
Home-Based Support Services Programs. We’ve been educating our policymakers
about the kinds of programs and policies that people with disabilities and their
families want. We’ve
lead the way, “saving” the Home-Based program three years ago when it was
threatened by state cuts and continued to try to improve it within the waiver
rules. We’ve
worked with the “Do the Right Thing Coalition” to increase and improve so
many important programs. We’ve
published more than 20 newsletters, created an information filled website, and
developed an e-mail distribution list of over a thousand. We’ve
held over 35 One-Day Conferences training advocates about Illinois services and
how to work together to improve them. We created and trained the Illinois Family
Support Task Force. We’ve
made sure that families were “at the table” when important decisions were
being made that impacted our lives. We’ve
done all of this with help, support, and funding from the Illinois Council on
Developmental Disabilities, the Illinois Division of Developmental Disabilities,
the Federal Commission on Developmental Disabilities, and your help through
donations and memberships. Big thanks to all of you! Two
years ago, our funding ran out. We’ve hung on with a wing and a prayer. With
sheer stubbornness, we’ve kept going. Now the FSN is proud to announce its
alliance with The Arc of Illinois, a historic moment in advocacy for people with
disabilities in Illinois! We
will remain our own corporation with our own not-for-profit status. We will
continue the important advocacy work for which we are known. But, we will enjoy
the benefits of being allied with an organization with a long, proud history of
advocating for people with disabilities and
with a stable financial and administrative structure. The
FSN and The Arc have already celebrated great success with new funding from the
State of Illinois to support the Family Support Network and the Illinois Life
Span Project. This new funding is the direct result of the hard work of Tony
Paulauski, Executive Director of The Arc. Thank you, Tony! Work
is already under way. The Family Support Network is making plans for the
beginning of “Illinois STARS for the Future”, an eight-month training
designed to inform and empower self-advocates and family members to be real
participants in personal and systems change (pg.7). We are hiring two new
advocacy coordinators (pg.2) and the newsletter you are reading is a direct
result of that new funding! The
FSN and The Arc of Illinois share very strong common values and have worked
together for many, many years with huge success. Together we will be so much more than we would ever be
separately. This
is a historic moment, not only for our organizations, but for the disability
movement in Illinois. We hope you will join us not only in celebrating this
historic alliance, but in our continuing struggle for the quality supports and
services that people with disabilities in Illinois need and deserve! Illinois
Life Span Project – Information Online for Families Where do you go for information
about advocacy resources and services for people with developmental disabilities
in Illinois? Many
people contact the Illinois Life Span Project at The Arc of Illinois.
Illinois Life Span helps families find out about where to go for supports
and services in the State of Illinois. We
call it “Illinois Life Span” because we help families with loved ones of any
age who have developmental disabilities. From the early intervention system and
special education advocacy resources through the transition to adult services
and beyond, the Illinois Life Span project asks the questions that many families
don’t know to ask to get the help they need.
Families like calling our hotline number, 1-800-588-7002, because of our
personalized attention and reliable follow up contact.
We want to make sure that the referrals provided meet the needs of the
families who call the Illinois Life Span Project.
For
people who like to do research on their own, our website www.illinoislifespan.org
offers information on all the service providers funded by the State of Illinois,
benefit resources, recreation programs and other opportunities you may not have
thought about to support
people with developmental disabilities. The
website also has support groups for specific disabilities listed.
National, state and local advocacy organizations are posted on the site
under “Advocacy Services” and “Links” for people to connect with others
who are in similar situations. While
this website is a very good tool, we are working on a better one!
Coming soon, the Illinois Life Span Project will have forums where people
can post messages and respond to other posts to share information and resources.
These forums will help people share information better than word of
mouth, since the words of many mouths will be posted for months to come. The newly enhanced www.illinoislifespan.org
website will have videos of Arc training events, special videos on advocacy and
so much more. We have an advocacy
toolbox to help people understand resources which might be helpful. We are
looking forward to launching the new website in October, 2005.
In the meantime, please visit us online or give us a call at:
1-800-588-7002. By
Mike Kaminsky, Illinois Life Span Project Director Job Opportunity! Enthusiastic Advocate
Desired!! The
Family Support Network is creating two new positions; “Chicagoland and
Downstate Advocacy Coordinators”.
These positions are designed to be part-time working about 20 flexible
hours a week from home offices. Applications are now being taken. Both of our new Advocacy Coordinators must be an energetic, creative people committed to the philosophy of Family Support. He or she must also: ·
Have
computer skills ·
Be
a self-motivator ·
Be well organized ·
Be able to work unsupervised ·
Be able to keep confidences ·
Be diplomatic ·
Be able to listen to others with patience and empathy ·
Be able to speak in front of groups ·
Be able to contribute written articles to the FSN Newsletter
or similar publications · Our Chicagoland Advocacy Coordinator must be fluent in English and Spanish Resumes may be submitted to the FSN
at 5739 W. Martindale Lane, Peoria, IL 61615 or by e-mail at fsn@familysupportnetwork.org.
A complete job description is available by e-mail or by calling
309-693-8981. PUNS -
Prioritization of Unmet Need for Services - Victory and Confusion Two
years ago, advocates celebrated a historic victory when a bill was passed by the
Illinois General Assembly creating a cross-disability database or waiting list
for services for people with disabilities in Illinois. Now,
for the first time, disability advocates can anticipate having real and accurate
information about the needs, met and unmet, of people with disabilities in
Illinois. Last
November, the State began officially gathering that information for persons with
developmental disabilities using a survey tool called the Prioritization
of Urgency of Need for Service (PUNS). The
name is an unfortunate acronym because, for us, PUNS is no joke. PUNS
will allow us to have accurate information to use as advocates as we talk to our
policymakers. PUNS
will be the tool the state uses as it decides who will receive services on an
individual basis. PUNS
will be the tool the state uses as new programs and services are being
developed. The
PUNS Survey is the result of a year and a half of planning and design by Celia
Feinstein of Temple University in Pennsylvania and the Illinois Division of
Developmental Disabilities. Ms. Feinstein was brought to Illinois by the
Illinois Council on Developmental Disabilities after developing a similar survey
in Pennsylvania. Based on that survey,
Pennsylvania increased funding for disability services by $835 million!
History tells us that this is an important effort! THE
PUNS SURVEY IS A FAMILY SUPPORT ISSUE. As
with any new project, there has been plenty of confusion. Many people perceive
the PUNS survey as being ONLY for people anticipating the need for residential
services. Others perceive the survey as being only for adults. The
survey is for ANYONE or the family of anyone anticipating the need for services
in the next five years. The person with a disability must have a developmental
disability as defined by the Division of Developmental Disabilities. For
families of minor children the need may mean respite or after school care. It
may mean access to therapies or equipment or home modifications. Do not think
about available services or specific programs; think about what your need is.
Think about what you haven’t been able to get, either because it doesn’t
exist or because it is not available to you. If
you do not anticipate having a need in the next five years, the PAS agent is not
supposed to complete the survey! So be thoughtful about your needs! This is your
chance! Families
that include members with disabilities have a hard time acknowledging their
needs. Our need to be self-sufficient and competent is vital. Our need to
present ourselves to the world as “normal” is powerful. All we want to do is
lead a typical life. We bury our struggles. THIS
IS NOT THE TIME TO BE PROUD. NOW IS THE TIME FOR YOU TO STEP UP AND BE COUNTED.
This
is the time to think critically about what our loved one with a disability needs
to be successful, either in your home or his home in the community. Your
willingness to complete the survey will allow us to advocate for family support
programs! Currently just over 6,700 individuals have completed the survey.
Demographics lead us to believe that as many as 14,000 could eventually be
included in the database. THIS
IS HOW TO DO IT. Call your local Pre-Admission
Screening (PAS) Agency (ISC Agency). They must fill out the survey for you with
your input. You can
identify your PAS agency on the web at http://www.dhs.state.il.us/OfficeLocator/
or through Illinois Life Span on the web, www.illinoislifespan.org, or by phone, 800-588-7002. We have also included a list in this
newsletter. Your
PAS agency representative will make an appointment to meet with you, probably in
your home, or possibly in their office. The
process of filling out the form involves a face-to-face conversation between the
PAS agent and the person with a disability, a family member or a guardian, and
any other person the individual with a disability wishes to include. The survey
represents the combined perception of all these parties. The PUNS survey must be updated on
an annual basis. At
twelve months, a notice will be issued to all parties of the need to update the
form. If not updated, an additional
warning will be submitted of the intent to close the PUNS record. Some people report being told that
they don’t qualify or that they’re not eligible.
Others report being told that if they don’t have a need within five years that
they don’t need to complete the PUNS. Everybody with a developmental
disability who anticipates a need within the next five years should complete the
PUNS form. Think critically about your needs. Even if it is “just” respite
or “just” after school supports, or “just” transportation. If
you are not satisfied with the survey, feel it has been filled out inadequately
or if you feel you have been inaccurately turned down in your request to fill
out the survey, you should contact your DHS Network Facilitator at 217-524-2521
or 312-814-2735. Please also contact Mike Kaminsky at the Life Span Project at
800-588-7002. We are trying to understand how well things are going and Mike is
tracking questions and concerns. Also, please remember that
inclusion in the database does not assume eligibility for services or guarantee
the receipt of services. WHAT
DOES THE FORM LOOK LIKE? The PUNS form first categorizes
need by three levels of urgency. Emergency:
the individual or caregiver needs support immediately; Critical:
the individual or caregiver needs support within one year; Planning:
the individual or caregiver needs support within 1-5 years or their
caregiver is aged 60+. Then it asks you to identify
supports and services you or your loved one with a disability need or will need
in the future. Even if you are doing well now, you need to think about
what you need to continue doing well! Our families should not have to become
dysfunctional to access help! Think
carefully about the choices being presented. Most will be obvious. The PUNS Survey is a new and
exciting opportunity for Illinois advocates. But it is frustrating. As
with any new project we are learning. Some question if the PUNS survey is asking
the questions we want to answer. Do we really have the opportunity to share our
needs? Others wonder if we shouldn’t be asking for information for more than
five years out. Maybe. Probably. As this process goes forward we will have
opportunities to ask for changes to the survey. But,
we must step up and use it to understand it! Please take this opportunity to contact your PAS/ISC Agency and ask for
an appointment today! DD Definition of
Eligibility for Services Following
is the definition of developmental disabilities used by DHS. You must meet this
definition for state-funded services and to be included in the PUNS database. A
person is determined to have a developmental disability if the person has Mental
Retardation or a Related Condition. Mental
Retardation refers to significantly subaverage general intellectual functioning
existing concurrently with deficits in adaptive behavior and manifested before
the age of 22 years. Significantly subaverage is defined as an IQ of 70 or
below. A
related condition refers means the individual has a severe, chronic disability
that meets all of the following conditions: It is attributable to Cerebral Palsy
or epilepsy or any other condition other than mental illness, found to be
closely related to mental retardation because this condition results in
impairment of general intellectual functioning or adaptive behavior similar to
that of persons with mental retardation and requires treatment or services
similar to those required for these persons. It is manifested before the person reaches age 22. It is likely to continue indefinitely. It results in substantial functional limitations in three or more of the following areas of major life activity: self-care, understanding and use of language, learning, mobility, self-direction, capacity for independent living. Just
What Are Pre-Admission Screening Agencies and What Do They Do? Pre-Admission
Screening (PAS) is really a service that is provided by
Independent Service Coordination (ISC) Agencies. Eighteen such agencies are
located around the state for easy access. You
do not get to choose which agency you
want to use. You must use the one
in your geographic area. A list is provided below. You can also locate your Case
Coordination Agency at www.dhs.state.il.us/OfficeLocator/
or through Illinois Life Span, www.illinoislifespan.org
or 800-588-7002. A list is also provided below. Pre-Admission
Screening is a process through which eligibility for certain state-funded
services is determined. Independent Service Coordination Agencies can
help connect individuals with disabilities to services for which they have
been determined eligible. They can also connect you to other helpful services. Independent
Service Coordination Agencies are the backbone of the service system as they
provide choices and options to people and their families as they access the maze
of services. Service Coordination Agencies - Phone Numbers
Illinois
Stars for the Future – Advocating for the Futures of People with
Disabilities in Illinois FSN
Announces New Training Initiative!! The Family Support Network is proud and excited to
announce a series of trainings designed to empower people with disabilities and
their family members to become confident, effective advocates for their futures
in their local communities, statewide, and nationally. We know that the only people truly qualified to
change the systems that effect us is “us,” people with disabilities and the
families of people with disabilities. Across an eight month period, participants will be
trained on current disability issues, technology, and best practices. They will
become familiar with the legislative process and how to work with policy-makers
at every level. Participants are
expected to attend ALL eight sessions Our training will be free to successful applicants
and a $50 stipend will be provided to each participant for each session attended
to help offset travel expenses. The Family Support Network is especially interested
in empowering inexperienced advocates with a wide variety of disabilities and
ethnic backgrounds wishing to grow their skills. Every year the trainings will concentrate on a
different part of the state. This year, the Family Support Network is seeking
fifteen individuals from the area defined as the Central Network by the Illinois
DHS Division of Developmental Disabilities. For the class of 2005/2006, the Family Support Network is
seeking out applicants from Adams, Brown, Calhoun, Cass, Christian, Coles,
Clark, Cumberland, DeWitt, Douglas, Edgar, Effingham, Green, Hancock, Jersey,
Logan, Macon, Macoupin, Mason, Menard, Pike, Montgomery, Morgan, Moultrie,
Sangamon, Schuyler, Shelby, or Scott Counties. Meetings are tentatively scheduled from 9:30 to 4:30
Saturdays on Nov. 5th, Dec. 10th, Jan. 14th,
Feb. 18th, March 18th, Thursdays on April 13th
and May 18th, and again on Saturday June 17th. If you are interested in being an Illinois STAR for
the Future Class of 2006, the complete brochure and application can be accessed
online at http://www.familysupportnetwork.org/2005ArcFSNAdvocacyTrainingBrochure.pdf. 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. We are once again hosting our Saturday “One-Day
Conferences” all around the state. We
are organizing now for this coming Winter and Spring (2005-2006). Can you or a group you are affiliated with help us with a Conference your
area? This is the help we need: Distributing
invitational brochures to everyone and every group you know. We would
like for you to aggressively advertise the conference to your group’s
membership and other organizations in your area. The FSN will create and provide
the brochures to you. We will mail them to the appropriate geographic area from
our database. Finding
a site… We need your help finding a place to hold the conference. We usually
easily find free sites in settings such as churches, libraries, park district
spaces, or agencies. Plan for a space that will
hold up to 100 people at tables. Attendance is most often around 30 to 50, but
sometimes much more! Inviting
one or more legislators for an hour or so in the afternoon. We will help you
with this. 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." For
more information contact: The
Family Support Network of Illinois, 5739
West Martindale Lane, Peoria, IL 61615 309-693-8981
or fsn@familysupportnetwork.org.
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