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December,
2001 Newsletter
State
of Illinois Faces Budget Crisis
“Grim!” When asked about the State of Illinois’ current financial
situation, Senator Radogno’s immediate and firm response was “Grim”.
She said that for the first time ever, all three major revenue streams -
sales tax, personal tax and corporate tax - have declined at the same time.
They all decreased in the Senator Radogno also characterized this situation as an “opportunity to provide for the long term good” as it will encourage belt tightening. In terms of supports and services for people with disabilities, we need to shore up the community side so as not to be as reliant on institutional care. Shoring up community supports is better for everyone - better for people with disabilities and better for the state. Representative
Hamos told us, “It’s going to be rough for the next 18 months.
The Governor doesn’t need to cut the $500 million right now, but he is
anticipating the worst and being cautious.” Representative Hamos also feels cuts could be made in a more equitable
and fair manner.
Human services are first on the chopping block, but when they are not
funded adequately, it is unfair to recipients and to providers.
What does this bode for the Family Assistance and Home-Based Support Services Programs? Senator Radogno said there is resistance in the General Assembly to make cuts to programs that directly assist people. The state is more likely to try to achieve payroll decline in state agencies and to decrease rates to providers like hospitals and nursing homes. That is good news for programs like the Family Assistance and Home-Based Support Services Programs. Senator Radogno said that families need to be educating the General Assembly about the importance of these programs with a goal of maintaining their budget in the coming fiscal year and to be prepared to work for increases when the economy is better. Rep. Hamos is very worried about the impact of budget cuts to human services. She said that we (the FSN) have every reason to be concerned as well. She recommended that we continue to work to maintain the Family Assistance and Home-Based Support Services Programs immediately and not to be hesitant to do so. Representative
Hamos noted that when she and Senator Radogno partnered together last year
around the direct care salary increase, “Our efforts were nothing in
comparison to the importance of the work of parents and community-based
organizations. Because of your
work, the effort was successful beyond our wildest dreams.” Senator Radogno complimented the Family Support Network on its “One Senator at a Time Campaign”, noting that it is a great idea and a great way to communicate with policymakers. She said, “Constituents assume that legislators know more than we know. We only know what our experience has taught us.” Senator Radogno said she really enjoys the opportunity to visit with constituents in her home district, either in their homes or in her office. Senator Radogno recommends that families meet with their policymakers, tell their stories and leave written materials. When
asked about our “One Senator at a Time Campaign”, Representative Hamos made
this important statement, “This is so important and I really want to commend
you for this effort. This is the only way to change public policy.
These kinds of grass roots efforts are the only way to bring awareness to
your issues and hold policymakers accountable.
It is so effective and so powerful when it happens.” FSN
Meets with Gubernatorial Candidates The Family Support Network (FSN) has made it a goal to meet with all six of the Illinois Candidates for Governor. To date we have had two exciting contacts. Early in November we had some wonderful conversations with Laurie Williams, Deputy Chief of Staff for Lieutenant Governor Corinne Woods. She was delighted to hear from us and said that time constraints dictated that Lt. Gov. Woods couldn’t meet with our group individually. However, she feels that the FSN has an important perspective and is anxious for us to participate in group forums around issues that impact people with disabilities. Supported employment, transportation, and health care would be possible examples. The FSN also suggested forums focused specifically on the disability system and how it can be improved. Laurie was enthusiastic about the idea. We have exchanged information and she has promised to make sure we are “at the table” as these discussions progress.
On Dec. 4th, the FSN had a wonderful meeting with Senator Patrick O’Malley. Sen. O’Malley is the father of a young adult woman with severe disabilities. He didn’t need a lot of educating! His family has made the commitment to support and love her in their home. He knows both the challenges and rewards of the lives we lead. We visited with Sen. O’Malley for almost two hours and had a hard time breaking away. Sen. O’Malley fully supports increasing funding for the Family Assistance and Home-Based Support Services Programs. Thank you, Sen. O’Malley! The FSN will keep you updated
as we make contacts with our remaining candidates.
I
would like to
start today by introducing you to two of the most precious human beings in the
world to me. This is my son,
Daniel, who is 16 and my daughter, Anna, who is 13. I’m
going to do something that I don’t normally do and that is talk bluntly in
front of Daniel about his disabilities and how they have impacted out lives.
Daniel has no speech. He has
big fine and gross motor problems. He
has no sense of danger. He needs
help with dressing, toileting, eating, getting a drink from the refrigerator.
He has very huge problems with behavior and can be very, very aggressive.
For long periods of his life, he would wake up screaming at night, biting
and scratching… sometimes several times a night.
I have, at times, lived an incredible Jekyll and Hyde life.
And yet I want you
to know that he is one of the most wonderful, gentle human beings. When he is sleeping, I am sure he will wake up and ask me, “Where is my
baseball bat?” or “Get my sister out of my room!” He talks to me with his eyes.
He
looks deep into mine to tell me how much he loves me and he roars when he pulls
a good joke on me. The
doctors use a diagnosis of Pervasive Developmental Delays of Unknown Etiology.
That means, “Whoa boy, does this kid have problems and we don’t have
a clue.” I have long since given up caring about the why.
What I want to know is how I can be sure he will have a happy, secure
life. Twenty
and thirty years ago the doctors might have talked me into putting Daniel into a
state run facility like Lincoln Developmental Center and believe me, when I tell
you I might have done it. It was
standard operating practice. I
might have made the same decision. But,
now we know that institutions themselves are DISABLING. This summer we let Daniel stay at Respite for two weeks while
we took his sister for the big Washington, D.C. that every family dreams of, a
trip that Daniel would not have been able to tolerate. Our
Respite is wonderful, as good as it gets. He
is well loved there. But, when we
came back his stature was more stooped, he looked out from under a furiously
knit brow, his legs were bit up (by himself), he had huge rashes on the insides
of his elbows and knees. He was
furious. I picked up a boy who was more disabled than the boy I
dropped off. I can’t imagine what
it is to live in a setting like a state op with no end in sight. Today parents know more. We know that we want our kids home with us, all of our kids. We are willing to make the sacrifices necessary to make that happen. We need to know that when we need help, we will get it. We need help while our families are whole and healthy, not after they are broken Did
you know that it costs $95,000 a year to support a person at Lincoln
Developmental Center? Did you know
that it costs $45,000 a year to support a person in a group home in Illinois?
Did you know that it costs about $11,000 a year to support a person
enrolled in the Home-Based Support Services Programs in their own home? Large
state operated facilities are an antique system of delivering services to people
with severe disabilities. And no one, no one, deserves job security on the back of my son’s or anyone else’s civil rights.
llinois Advocates Urge Governor to Close Lincoln Developmental Center!!
Immediately,
Governor Ryan ordered that 90 residents from LDC be moved to other state
operated facilities and 90 residents from those facilities be "bumped"
to community settings such as group homes. On
Monday, October 22, the Consortium of Illinois Disability Advocates (CIDA),
hosted a press conference at the State Capitol, urging Governor Ryan to close
the Lincoln Developmental Center (LDC) and reassess all current residents in
State Operated facilities for alternate living situations including access to
home and community-based services. Charlotte
Cronin attended on behalf of the Family Support Network and her testimony
precedes this article. Several
advocates, including Darlene Scroggin pictured above, spoke about their concerns
regarding this facility. Among
these concerns are the history for abuse and neglect of the residents at LDC.
Statistics regarding the excessive amount of funding used to support
people in the institutional settings in Illinois were also related. Don Moss of United Cerebral Palsy of Illinois stated that the average
expenditure per year per individual in an Illinois institution is $99,641.
This figure is more than twice the amount needed to provide more
normalized community integrated group home settings for these individuals. The
overwhelming message of the participants was that Illinois must reconsider
supporting the outmoded and costly institutional system when better and less
costly services can be provided in less restrictive community settings.
The
Lincoln Developmental Center currently has 370 residents. It originally opened its doors in 1877 and has housed as many as 5000
people at one time. It is one of 11
state-operated institutions that currently house a total of 2,300 people with
developmental disabilities in Illinois. Illinois
houses more people in state institutions than most other states – ranking 43rd
nationally. We also spend
less on community programs, ranking 42nd. Despite
the pleas of parents and lawmakers, Gov. Ryan has said the future of the Lincoln
Developmental Center rests on the outcome of a 30-day review of the troubled
facility scheduled to be completed Dec. 5th. Lawmakers
have said that they are only hearing from families who have members at Lincoln
Developmental Center. This is not surprising, as many of us are a long way
from having to consider where our family members will live when they can no
longer live at home. However, this issue shapes the futures of all people
with disabilities in Illinois. Large segregated facilities are an antique
way of providing services for people with disabilities. They require Rolls
Royce funding for junkyard services. The civil rights movement of the
1950's and 60's taught us that separate is not equal and that the best
protection any person can receive is for their services to be provided in full
view of their community and friends. For
those of you that had expressed a desire to send letters to lawmakers, we have
attached a few talking points that may be used in your letters to educate
others. Please feel free add your
thoughts and share these with others. Please
contact us if you have any questions and let us know if you send letters. We
suggest you send letters to the Governor, your state legislators, and as many
other legislators as you have the patience for. We would include:
You
may look up the address of your legislator and others at http://www.legis.state.il.us/ Talking
Points
A Report on Illinois’ Community System of
Services and Supports: Historical Perspectives and Contemporary Issues; http://www.iacdd.org Ever
wonder how we got where we are? How
did things get like this? Last
April, a coalition of disability organizations were invited to do a PowerPoint
presentation for the Illinois Senate Appropriations Committee. The result was a powerful and comprehensive overview of services in
Illinois, how we got where we are and what the challenges are that the
Developmental Disability Community faces today. Sounds pretty heavy but it is easy to access and easy to understand on
the web at http://www.iacdd.org. Knowledge
is power and you will be able to speak more comfortably to your policymakers
when you better understand the system. Look
it up! You’ll be glad you did!! Family Support Network Membership Grows! Our members are coming through for us! Since our membership drive began late in October we membership has grown to nearly 200 and we have received very generous additional donations as well! In total we have raised close to $4,500. That’s a great response and a great beginning. Thank you! 200 memberships are only about 5% of our readership. Just think, if half of the 4000 people who receive our newsletter became members, we would have $30,000 in our treasury for the important work we do. Do you think we do a good job? Are you glad there are consumers and parents out there advocating for the services we need? Fill out the form below and SEND US YOUR $15 (and more if you can)!
Yes!
I want to help the Family Support Network continue to educate, inform and
advocate for individuals with disabilities and their families. Family Support Network Membership Form
Please mail to The Family Support Network, 5739 W. Martindale Lane, Peoria, IL 61615 Thank
You! Many of our family members and friends are also anxious to support organizations that provide valuable assistance to us. Some of you may have friends with disabilities or know of other families of children with disabilities who may not be aware of our organization. Or you may have a grandma or grandpa who is anxious to help. If you know of anyone who might be interested in joining us, please give us a call, or send us a note or e-mail with his or her name and address. We will send them a letter of invitation! You can call us at 309-693-8981 or e-mail us at FSN@FamilySupportNetwork.org. Our mailing address is 5739 W. Martindale Lane, Peoria, IL 61615 We thank you again if you have already sent in your membership. If you haven’t, grab an envelope, stamp and your checkbook! We need you too!
FSN Board President Named Kennedy Fellow!!
Each year the Foundation brings a parent or family member of a child with a disability to Washington, DC for a full year, where they actively participate in public policy development through work on the staff of a congressional committee, or a federal department. Former Parent Fellows describe the Fellowship as a major life-enhancing event. This next year offers exciting opportunities to be involved in policy and legislative development in key areas such as special education, health and mental health care, childcare, housing, justice, child welfare and other areas relative to improving the quality of life for individuals with mental retardation and other disabilities. During this one year Fellowship, Alan will learn how legislation is initiated, developed, and passed by the Congress. Selected fellows are expected to live in the Washington, DC area during their fellowship year. This means that Alan will be taking next year off as Board President but is planning to return to us in 2003! Alan
says, “The Kennedy Fellowship is an awesome responsibility and a wonderful
opportunity to learn and to effect public policy for people with disabilities.
And I am expecting this year to be a great adventure, too!!” Alan previously served as Board President of United Cerebral
Palsy of Illinois and chaired the Illinois Council on Developmental
Disabilities. His daughter, Sarah, has significant disabilities. Alan’s wife,
Beth, claims that she is just in denial! We have always known that the Family
Support Network is made up of fabulous people and this just proves it. This fellowship is a great opportunity and being selected, a tremendous
honor! Congratulations again, Alan,
and have an awesome year! But, come
back to us soon!
Outdoor Opportunities for People with Disabilities Jay Williams is the administrator of the Disabled Outdoor Opportunities Program, established in 1999 through the Illinois Department of Natural Resources (IDNR). In describing the program, Jay notes that the State of Illinois led the nation in outdoor activities for people with disabilities last year. The IDNR is committed to providing greater access and more programs for individuals with disabilities to hunt, fish, and pursue other outdoor activities. Hunters with disabilities can participate in deer, pheasant, waterfowl and dove hunting at various sites throughout Illinois. A number of fishing events are held each year as well. IDNR’s intention is to expand these opportunities so more individuals may take part. One example of a successful event is at Rock Cut State Park where hunters have participated in shotgun deer hunts for several years now. They want people to continue to hunt and fish in the state parks but they also would like to see greater use of the trails, picnic sites, boat launches, camping sites, and overnight cabins. They are continuously working on accessible restrooms and shower houses. The department would like to see more people using the parks and would be interested in hearing if there were anything they could do to help you. You may contact the site superintendent at the park or Jay Williams at 618-439-9111. For
additional information about this program, you may also e-mail Jay
at Jwilliams1@dnrmail.state.il.us. The Disabled Outdoor
Opportunities Programs calendar of events and other helpful information can be
found at the following website address: http://www.dnr.state.il.us/doo/index.htm. We try very hard not to inundate you with e-mail messages, but having the ability to communicate with a large segment of our membership through this mode of communication has become so valuable! It’s fast and it’s free! Please share your e-mail address with us if you are willing to receive communication from us in this manner. We promise to send only important messages! Thanks for your help! Would you like to learn more about family support? Do you belong to a group or organization that hosts informational meetings? Give us a call! One of the important ways members of the Family Support Network can work to improve and expand service for people with disabilities and their families is to educate each other about what good family support looks like, what family support looks like in Illinois, and how we can work together to expand services in Illinois. The Family Support Network is always looking for opportunities to educate. If you would like a speaker for your group, please contact us. We would be happy to work with you. No group is too large or too small. We can talk for an hour or hours! We can help you organize a function or facilitate a “breakout” at a conference. You can reach us by phone at 309-698-8981 or by e-mail at FSN@FamilySupportNetwork.org. Thanks!! Survey on the Effects of Changes to the Home-Based Support Services Program Our Spring 2001 newsletter, we told you about changes to the guidelines for the Home-Based Support Services Program that were to be implemented on July 1, 2001. Six months have passed and we are interested in learning how these changes are impacting both the recipients of this funding and the service facilitators who assist them. Please take a minute to complete the following survey. Please print this page and circle the response that is most accurate in your experience. Please share specific examples! Mail to the FSN at 5739 W. Martindale Lane, Peoria, IL 61615, fax to us at 309-693-8962 or e-mail to us at FSN@FamilySupportNetwork.org Thank you
Thanks again for your time in completing and returning this survey!
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first quarter of this fiscal year (July, August
and September), which means that the state budget was in big trouble even before
the September 11 tragedy, which of course, only made it worse.
Representative
Hamos noted that the Governor and the legislature have made a commitment that
50% of all new revenue will go to education.
Great
News!