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Governor Signs Legislation! $48 Million New Dollars for DD/MI Services! $12 Million Restored! In the following article, Tony Paulauski of the Arc of Illinois and Charlotte Cronin of the Family Support Network summarize the achievements of advocates in Springfield this session. What a year! THANK YOU, TONY! You
had to be there to believe it.
It’s late Friday, May 26th, and Representative Lee Daniels gives a
show-stopping impassioned speech to the House of Representatives and gets the
DD/MI budget removed from the DHS Appropriations Bill.
HB 3738 is created to carry a DD/MI budget with a $138 million increase
in services. You
had to be there to believe it. Senator
Deb Halvorson comes out of Senate Democrat Caucus and announces, “There is no
way HB 3738 will be moved out of Senate Rules.”
Six hours later, it moves out!! You
had to be there to believe it. Tony
Paulauski, Executive Director of the Arc of Illinois, sitting on the curb at
7:30am, waiting for the Senate President Emil Jones to pull into his parking
space. His goal? Make sure Senator
Jones allows HB 3738 to move out of committee and onto the Senate floor for a
vote. You
had to be there to believe it. May
29th and advocates pack the Senate Appropriations Committee to watch
HB 3738 UNANIMOUSLY passed out of committee! You
had to be there to believe it. The
Illinois General Assembly reaches an agreement with the Governor in the last day
of session to INCREASE funding to MI/DD services by $48 million, a 4% COLA
increase. What’s
it all about? For
the second year, the state of Illinois continues to face its worst budget crisis
ever. For the first time in
decades, Illinois State revenues have decreased. For the first time ever, all three major revenue streams -
sales tax, personal tax and corporate tax - have declined at the same time. Just
like our families suddenly discovering that we had to take a major wage decrease
after maxing out our credit cards and emptying our savings accounts!
How do we pay for our basic expenses and still pay our creditors? Governor
Blagojevich and the Illinois General Assembly faced a “family budget” with a
projected $5 billion deficit! As if that isn’t hard enough, the Governor pledged to
balance the state budget without any expansion of his two best potential new
revenue sources: gambling and increased state income tax. In
April, he proposed a 1.25% cut in funding to community services. Community
services were also to be subjected to a 2% reserve.
The reserve is a nest egg kept on the side in case things get even worse.
The effect was that services for people with DD and MI were looking at a
total 3.25% decrease in services. The
DD/MI community cannot accept this. People with developmental disabilities
and/or mental illness have always been underserved. Untold thousands of people
receive no services. The 44,000 people currently served are often in programs
stretched so thin their futures are in jeopardy. Local charities and donors
cannot be stretched further to fill funding gaps. The State of Illinois had not
provided a funding increase since July 1, 2000.
The state had failed to keep up with inflation, leaving agencies trying
to function on budgets already ranked 47th in the nation. As
we entered the final weeks of the legislative session, we had our work cut out
for us. Many were predicting that restoration of the 1.25% cut would be a
victory. It
is no small matter that we not only restored the 1.25% cut to community
services (an estimated $12 million) for individuals with developmental
disabilities and individuals with mental illness and Centers for Independent
Living, but also added $48 million to the proposed state budget for a 4%
“cost of doing business increase!” How
did we do this? Few other groups have as well organized an army as we have.
Our victory is the result of
years of hard work and collaboration with people with disabilities and community
living, working with legislators, media and editorial boards throughout all of
Illinois. We
also had the advantage of having a father, Rep. Lee Daniels, as the Chairperson
of the House Developmental Disability & Mental Illness Committee. Not only
were most of our bills passed through his committee, but also Rep. Daniels
introduced many important bills, including House Bill 3738, which became our
rallying point in the last weeks of the legislative session. His leadership in
both the House and Senate was incredible. Other
legislators worked extremely hard for us, including Senator Deb Halverson,
Senator Donne Trotter, Senator Susan Garrett, Senator Steve Rauschenberger, and
Senator Chris Radogno. In the House, Rep. Sarah Feigenholtz, Rep. Jim Brosnahan,
Rep. Beth Coulson, Rep. Renee Kosel, Rep. Rosemary Mulligan and many more in
both the House & Senate. This was truly a bipartisan effort. Many thanks to our colleagues in the “Do the Right Thing Campaign”; The Arc of Illinois, IARF, UCP of Illinois, Don Moss and Associates, and Institute on Public Policy. Other Legislation Passed This Session: Cost
of Doing Business (the COLA),
HB 2750 includes the 4% “cost of doing business” increase. $40
million dollars! DHS
Budget. HB 2716 includes and
restores the 1.25% cut to community services. Aging
Care Giver, HB 1087 amends
the Illinois Act on the Aging. Requires the Department on Aging to establish and
administer a program to provide financial assistance to older Illinois residents
who are the primary caregivers of family members with developmental
disabilities. Death
Penalty Reform, SB 472
includes a section that disqualifies persons with mental retardation for the
death penalty. A defendant with an IQ of 75 or lower is presumed to have mental
retardation. There are numerous other reforms in the bill. Lincoln,
SB 1239 includes $7 million for small group home construction on the former
institutional site. Olmstead
Blueprint, HB 684 is a
comprehensive Olmstead blueprint and advisory committee. Unfortunately lacks the
“Katie Beckett” waiver provisions we had been working on. “Katie
Beckett” Waiver, HB 989
requires a report to cover funding, number of eligible children, number of
applicants, number of children actually served, the nature, scope and costs of
the services, the comparative costs of care in a hospital, skilled nursing
facility or ICF, the qualifications, skills and availability of caregivers and
information regarding the extent to which the existing program could provide
care to children in less restrictive settings who are currently in institutions.
Another part of the bill allows DPA to offer home-based and community-based
services for children with developmental disabilities and severe mental illness
or emotional disturbance even if they are not Medicaid eligible. Disability
Workforce HB 816 requires
annual reports to the General Assembly on how “One Stop” employment and
training centers are serving persons with disabilities. Collective
Bargaining for PA’s, HB
2221 essentially is a codification of an Executive Order issued by Gov. B that
makes SEIU the exclusive bargaining agent for wages and working conditions for
Personal Care Attendants. PA
Wage Increase, HB 1179
actually raises the wage $2/hour ($1 now and $1 next January). No appropriation
attached. Prescription
Drug Discounts, SB 3 creates
a prescription drug discount purchasing program for persons with disabilities
and persons age 65 and older. Requires a $25/month fee for each participant
except for persons eligible for the Circuit Breaker Pharmaceutical Assistance
Program, who can choose to purchase discount drugs that are not available under
the Circuit Breaker program. Identify
them at http://www.elections.state.il.us/
Medicaid
Block Grants – Do I
Need to Understand This? If
loving a person with a disability doesn’t bring enough challenges, we need to
understand some very complicated policies so that appropriate services can be
available. Recently,
we all have been reading about “Medicaid” Block Grants in the news.
President George Bush has been pushing to give states funding in large
fixed amounts as opposed to in response to the specific needs of individuals.
Medicaid funding is the very basis of most of our services.
The State of Illinois depends on the Feds to reimburse us for half of
what it spends on a wide variety of services, including our group homes and the
Home-Based Support Services program. The State has been aggressively trying to
“waiverize” as many services as possible. In
the following article, Mark Karner tries to bring us up to date and explain this
issue. Mark
is the Vice President of the Board of Directors of the Family Support Network
and the Home Services Team Coordinator for Progress Center for Independent
Living in Forest Park, IL. Thanks, Mark! On
June 12th, the National Governors Association (NGA) Medicaid Reform
Task Force, which was comprised of five Republican and five Democratic
governors, disbanded without coming to consensus on the details of a Medicaid
reform package. Stating that there were "true philosophical differences of
opinion with our Republican colleagues," Democratic governors criticized
them for "recommending enactment of a 'one-size-fits-all' federal block
grant". This is a fabulous victory for Medicaid advocates because as
late as two weeks earlier everyone thought that the block granting of Medicaid
was inevitable. Advocates had feared that an agreement on federal funding caps
would lead to support of some form of block grant in Congress. Many
factors contributed to this breakdown, including aggressive lobbying of Governor
Tom Vilsack (D-IA) and other Democratic governors by Democratic Congressional
leaders and Medicaid advocates. The failure of the Senate and House Medicare
Reform bills to pay for "dual eligibles" (beneficiaries eligible for
Medicare and Medicaid) also stopped progress on the Governors' work. The
Democratic and Republican governors sent separate reform proposals to HHS
Secretary Tommy Thompson. The Republican letter discusses why they
couldn't come to consensus, but why Medicaid Reform complete with caps is good
policy. The Democrats' statement, among other points, adopts their
"no-caps" message. Prospects for legislative enactment of either
proposal this year are unclear. For
11 million Americans with disabilities, Medicaid is the most important funding
source for health care and other needed supports and services. Generally, people
with disabilities who are SSI eligible are considered Disability
advocates across the country had been urged to contact their legislators and
State Medicaid Directors to express their grave concerns regarding the
possibility of the proposed changes to the Medicaid program. The President's
proposed changes as presented in his FY 2004 budget offered states the option to
receive Medicaid funding in lump sum payments (otherwise known as block grants).
These payments would take the place of current Medicaid and SCHIP
reimbursements. The President's proposal included changes to Medicaid that could
result in the elimination of much of the individual entitlement to critical
health and long-term services, as well as, a loss of protections regarding
service access and quality. The National Governors Association (NGA) worked on a
similar draft proposal, which was originally developed by Govs. Tom Vilsack
(D-IA) and Jeb Bush (R-FL). Initially, states would have received more funding
and would have had the option to change distribution criteria. This looked
attractive to the states because of the current Medicaid budget crises they are
experiencing and the possibility of altering programs to eliminate populations
that are currently receiving Medicaid funds. Like
the President's plan, the NGA proposal would have allowed states to opt for a funding
cap on federal payments for all so-called "optional" people and
services. However, the term "optional" can be misleading. Of
those enrolled in Medicaid today, 56 percent of seniors, 22 percent of people
with disabilities, 20 percent of children, and 43 percent of parents are covered
at state option. These low-income people are very much in need of health care.
Similarly, the term "optional" services covers a range of benefits
usually considered necessary, services such as prescription drug coverage;
vision, hearing, mental health care; and rehabilitation services. Taken
together, these "optional" people and services account for fully
two-thirds of Medicaid spending today. The
proposed funding cap would have frozen state programs at a time when states have
already reduced Medicaid coverage and services in order to close budget gaps.
The caps would have inhibited states from restoring recent cuts when the economy
recovered and would mean fewer federal funds for states to help with future
economic downturns. Additionally, to induce states to opt into the new capped
funding system, the NGA proposal, like the Bush Administration's plan, would
have reduced the amount of money states need to spend on Medicaid. Over the next
10 years, this would have taken nearly $500 billion out of Medicaid and as a
result, millions of seniors, people with disabilities, and children would have
lost access to necessary health care. Additionally,
in related good news, it was cited on June 4th by the Associated Press that
states struggling under the weight of financial hardship can start applying for
roughly $10 billion under a broader law designed to bolster the national
economy. Treasury
Secretary John Snow sent a letter Wednesday to the nation's governors as well as
officials representing the District of Columbia, Puerto Rico and other U.S.
territories, outlining what they need to do to get their share of the aid.
$5 billion in aid is available this year and another $5 billion in fiscal
year 2004, which begins Oct.1. That
money, along with an additional $10 billion in new Medicaid assistance to
states, is part of a 10-year, $350 billion package, which includes a fresh round
of federal tax cuts, passed by Congress and signed into law at the end of May by
President Bush.
Congress set up a formula to determine each state's and territory's share
of federal aid based in part on its population figures, using 2000 census data.
As a result, Illinois will receive $422.3 million over the next 2 years. Home-Based
Support Services Update We
know that the changes to the Home-Based Support Services program continue to be
of keen interest to members of the Family Support Network!
In our February newsletter, we summarized key issues.
Since then, the “In-Home-Based Support Services Committee” has met a
number of times. In March, the
Family Leadership and Systems Change Project Task Force met in Springfield,
testifying to the House “Developmental
Disabilities & Mental Illness Committee” on how the “waiverization” of
the Home-Based Support Services program has impacted the quality and
effectiveness of the programs. The Task Force also had an opportunity to meet
with Secretary Carole Adams. We discussed the same issues.
Representative
Lee Daniels has indicated his desire that the Task Force and other interested
parties (that’s YOU) meet again with his committee to give them more
information with more time allotted. He
has also asked us to put together a report summarizing the issues being
discussed and the impact of the changes. While
we do not have space in this newsletter to go into depth on each issue, we would
like to bring you up to date on progress since last February. Continuing
Services for Adults with Mental Illness Participants
with MI continue to receive services under the “old” rules. Because they do
not have “developmental disabilities”, they do not qualify under the waiver
rules. Many participants remain
very worried, however, that services will be taken away from them.
This
year has brought much debate about the efficacy of regional MI Centers such as
Zeller Regional Mental Health Center in Peoria.
Unmentioned in the debate is the existence of the Home-Based Support
Services Program, a program that has been so successful in keeping a very high
percentage of its participants out of the hospital. It is ironic that this very
successful program remains virtually unknown and serves only 719 adults with
mental illness. To
date there are NO changes in the rules for them and NO new movement to remove
them from the program. “Exceptional
Level of Care Funding” The
In-Home Supports Committee has been working hard to come up with criteria that
will address these issues. At a
recent meeting, the committee members concurred that the state’s financial
condition makes it very difficult to establish exceptional level of care
criteria that will truly provide what people need.
Consequently, we are struggling to find a way to address the needs of
people currently enrolled while waiting for the funding situation to improve. Originally, the Office of DD expected to have new rules in
place by December 2002. That did
not happen. The Committee expects
that the current funding arrangement will go on for an extended period of time.
Participants receiving services from more than one Waiver Program (such
as ORS Home Services or the Traumatic Brain Injury Waiver) will continue until
further notice. “Group
Activity" Service Code The
Office of Developmental Disabilities has been very creative in working with the
In-Home Support Services Committee to design a new service code that will allow
enrollees in the HBSSP to participate in a wide variety of community activities
such as camps, college courses, and Y memberships. Getting this service code
designed and submitted to the Feds is the current priority of the Committee.
The committee is also interested in coming up with a better name.
Currently being considered is the “Community Integration” Service Code.
If you have any ideas, please let us know.
Transition
to HBSSP for Participants Leaving the Family Assistance Program An
important characteristic of good family/individual support is the concept of
continuity of service - from birth to death. In the “old” HBSSP, families of
minor children participating in the Family Assistance Program (FAP) were
automatically “rolled” into HBSSP when they reached the age of 18, assuming
they continued to meet the qualifications. Participants
in FAP who turned 18 in Fiscal 2003 (July 1, 2002 to June 30, 2003) are being
transitioned into HBSSP. Secretary
Carole Adams agreed in a meeting on July 18 to sign a letter allowing FAP
participants turning 18 in Fiscal 2004 to transition to the Home-Based Support
Services Program, assuming they meet the qualifications. Hopefully,
enrollment criteria for the HBSSP will be determined during the upcoming year
and this question will be resolved permanently. The
state’s continuing budget problems only worsen this problem. In-Home
Supports Standing Committee Membership Status You
Tell Us We’re Fabulous. You Tell Us
We’re Important. You Tell Us We’ve
Made a Difference. On June 30, the Family Support Network will be at the end of its latest grant from the Federal Administration on Developmental Disabilities. We’re just a scrappy group, living hand to mouth. We are people with disabilities, moms, dads, sisters, and brothers - working from our homes, trying to make sure the world is what it needs to be for people with disabilities. We pinch pennies until they scream. We’ll have only about $3500 in funding left. That’s only enough to last us about a month and a half. We’ve collected that money through donations and memberships. We have over 4600 people on our mailing lists. We e-mail over 850 people with informational updates. Yet, we only have 394 paid or scholarship members. Soon we will have to make hard choices. Shall we close shop? Shall we “give” ourselves to another organization? Shall we only mail our newsletter to official FSN members? Are we crazy? Are we delusional? Is it possible that you all don’t really care enough to keep us going? We know that dealing with disability is expensive and many have a hard time coming up with a $15 membership. But, don’t you care enough to just write and say, “Give me a scholarship?” The Cronin family is at a crossroads. My family takes a big hit because of the time I spend on this. Nancy, Deb, Teresa and I cannot do everything we do and still worry about how we will pay the phone bill or the printer. I can’t and won’t continue to “push a square peg in a round hole” if you don’t show me that it’s important to you, too. I don’t want to let the Family Support Network go. We’re the organization that speaks for families. We know what it is to live in the trenches loving and caring for someone with a disability. We’re the ones who understand when a rule or regulation makes a program unworkable and/or unusable. We’re the ones who try to understand and educate about the incredible maze of programs and policies that people with disabilities need to navigate. We're still trying to find sources for funding through grants, corporate donations, etc. We’ve had tremendous success and not because we’ve had tons of money with which to work. We have had success because of the commitment and dedication of our membership to the goals of our organization. This remains intact. We will continue to do what we can with the financial resources we have and will do our best to maintain communication with you through e-mails. If you haven’t joined the FSN or can afford to send an additional donation, it’s now or never!
Please help NOW! Become an official member of the Family Support Network.
Make that extra donation today. Every
penny is important. Thank you!! A
Mom Speaks Out . . . Help The Family Support Network Penny
Bernstein has been a generous contributor to the Family Support Network and is
not at all hesitant to explain her motivation for supporting the efforts of the
FSN. The Home-Based Support
Services Program has improved the quality of life for her son, Nick.
Penny believes that this is worth an investment. Penny
Bernstein is the mother of a 28-year-old son, Nick, who has a severe seizure
disorder. Despite all of his
medications, Nick needs constant supervision.
Penny and her family have done their best to support him and provide him
with a full life within his community. He attended private school and is now
participating in a developmental training program.
Penny has a part-time job outside the home.
Nick
needs support to participate in community activities. He uses his Home-Based
Support Services funding for respite services that provide this support. These
services greatly improve the quality of his life by allowing him to participate
in activities with his peers and community members.
Some of the activities in which Nick participates include therapeutic
recreation, bowling, working out at the Y, and going to museums.
Nick’s respite worker makes this possible. Penny notes that 28-year-old men prefer to do these
activities with other guys and not with their mothers.
Although the therapeutic recreation program Nick attends is wonderful, he
also enjoys being included in community activities that he could not otherwise
attend without support. These opportunities are incredibly important to building
a full life for Nick.
When asked why the FSN is important
enough to warrant her donations, Penny answered that the reasons are numerous.
First, the FSN is out there educating policymakers about the needs of
people with disabilities. They get
real results. Secondly, the FSN has
been very effective in uniting people with disabilities and family members
around the importance of family support. They
keep people connected and informed about the issues that will affect them.
Additionally, the FSN has been very effective in the past in getting more
funding and more people added to these vital programs.
The Home-Based Support Services funding is incredibly important.
Everyone deserves the opportunity to lead a full life in his/her
community. Penny
noted that when this program started, there was concern about the “fairness”
of a lottery to choose recipients of this funding.
People who were selected sometimes felt guilty about receiving the
assistance when their friends and neighbors who needed support were still
waiting. The solution to this dilemma, however, is simple.
All of those who need help should be funded.
The people who continue to fight for improvement, growth and expansion of
these wonderful, cost-effective programs are the people in the Family Support
Network. Last year when the
Home-Based Support Services program was nearly dismantled, it was the FSN that
was responsible for saving the program. When
the program changes were announced, again it was the FSN that stepped up to
answer the questions and clarify the details of the new program. Penny
believes that others should donate to the FSN for these same reasons.
People who have been fortunate enough to receive these supports and
services need to contribute to the organization that has lead the fight to
improve and expand this program for all in our state who need it.
A lot of work remains undone and the FSN should be there to lead the way. Summer
2003 Dear
Friends, My
name is Bridget Brown. I am 17
years old. I have Down syndrome. I
have been involved in the Family Support Network for 3 years. I
think the Family Support Network is SO IMPORTANT for people with Disabilities in
Illinois. They work with the people
in Springfield and let them know that People with Disabilities are important.
They deserve opportunities to live in their communities.
Many of my friends have a disability.
I want them to succeed and have their dreams come true. Some
of my friends need help taking care of themselves.
My one friend needs someone to lift her.
Another friend needs someone to help her eat. Some of my friends cannot speak for them selves.
Everyone
deserves the right to live in their home and community.
It makes me very sad. It
breaks my heart so many people end up in institutions or in a place where they
don't
have the support they need. Please
make a difference! Join the Family
Support Network Today! You can make
sure every Person with a Disability in Illinois can have a full and wonderful
life. Sincerely, Bridget
Brown |
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