Taxpayers for Illinois

Wednesday, October 14, 2009

Cutting the meals for the disabled

Cutting the meals for the disabled(,100809kadner.article)
October 8, 2009
So you want government to cut the fat, tighten its belt and fire all those do-nothing patronage employees.
You want the government to spend tax dollars as you would.
Well, here's what happens when the cuts begin.
Illinois, facing a multibillion-dollar budget deficit, is going to cap and cut services provided to disabled people by state-funded personal assistants, who make make about $10 an hour. They help disabled people go to the bathroom, wash their clothes, make their meals, shower, get dressed and make visits to the doctor's office.
From now on, they will be allowed to provide meal preparation only 30 hours a month because, according to the Illinois Department of Human Services, most people don't eat three prepared meals each day.
That's a lifestyle choice, the state claims. And the state is no longer going to accommodate the high-flying lifestyles of disabled people who want three home-cooked meals a day.
"Buying a microwave may reduce need for assist with meal preparation," contends a Power Point presentation prepared by the state for home-service providers.
And if someone in a wheelchair can't reach a microwave, well, maybe they can use a grabber.
That's the solution suggested by the state for doing laundry.
"Buying a grabber may reduce need for assist with laundry," government officials contend.
Assistance with money management matters will be capped at 3 hours a month, laundry at 12 hours a month, housework will be limited to 17 hours a month and assistance outside the home (for shopping, etc.) will be capped at 18 hours per month.
Is this what you had in mind when you said the state should tighten its belt?
On Wednesday, as a training seminar for employees of the Illinois Department of Human Services was taking place inside a Holiday Inn near Midway Airport, disabled people in wheelchairs protested outside.
Susan Aarup, 40, who lives near Midway Airport, told me what the cuts and caps will mean to her.
"It means when I have to go to the bathroom, I won't be able to," said Aarup, who was born with cerebral palsy and is confined to a wheelchair.
That's not just an inconvenience, it could be a health hazard.
Aarup and others in the home-services programs will be allowed to appeal the caps based on personal need.
Right now, she said, personal assistants spend about nine hours a day with her. She lives alone.
"What the state is going to eventually do is force many of us into nursing homes," Aarup said, voicing a concern shared by many of the protesters. "That means we will no longer be productive taxpaying citizens, but it also means that the people of this state will be paying 20 times more to keep us in nursing homes. It doesn't make sense."
Michael Ervin, another protester in a wheelchair, noted that while the state will hear appeals for special cases, many of those individuals don't have the means to fight for their rights.
"There are people with cognitive disorders or speech disorders, who just can't verbalize their needs," Ervin said. "'There are other members of our community who just don't have the energy or the personality to fight against the bureaucracy. And why should we always have to fight for every right to live like a human being? It's not right."
The state provides personal assistants to about 35,000 people statewide, so I wondered just how much money Illinois would save by capping the hours of personal assistants.
I called two different media relations people paid by the state but couldn't get an answer to that question. I was told the state reviewed the services and decided some were excessive and unnecessary.
Maybe this is what you expected if you're a resident who opposed a state income tax hike.
Maybe that's what you wanted when you asked Gov. Pat Quinn to cut the waste in the state budget.
But I don't think the majority of Illinois residents wanted cuts imposed on the people who help others get in and out of bed.
I think they thought the fat cats, the do-nothing nephews of politicians, the management types with bloated salaries, would get the heave-ho.
Instead, college students are losing their state grants; treatment programs for the mentally ill, alcoholics and drug abusers are being cut; and the disabled are being told to find a way to wipe their rear ends.
You can blame the politicians for that. But in a democracy, we the people are ultimately responsible for government decisions.
We're doing this. And if you don't like what's happening, you should let the governor know about it.
Carrying signs reading, "We've asked and asked - must we beg" and "Home Services=Dignity," the protesters rolled along a sidewalk near Cicero Avenue on Wednesday as motorists honked their horns in support.
Some hotel employees threatened to call the police and eventually did. The Bedford Park police wisely sat in their squad cars and allowed the protesters to chant, "No cuts, no caps" until they left.
Too bad they didn't throw the disabled folks in jail. Maybe then people would care.

Monday, September 28, 2009

Action Needed: Call Your Senator

We received this bulletin from the National Association for Down syndrome (NADS)

Action Needed: Call Your Senator
If you have questions, please contact Susan Goodman at

Support Long-Term Services and Supports in Health Care Reform

Action Needed:
Call Your Senator with the following message:

Support long-term community support provisions in health care reform (Community First Choice Option and the CLASS Plan) in the Health Care Reform Bill.

Thank you for including provisions that prohibit pre-existing conditions provisions and lifetime caps on benefits that discriminate against individuals with disabilities.

You can use this toll-free number: 866-324-0787 which will connect you to the Capitol switchboard and ask for your Senator's office. The link to a directory can be found at the bottom of this e-mail.


Currently, the House of Representatives and the Senate are in various stages of development of health care reform bills. The House of Representatives currently has one bill it has developed that is still under consideration (HR 3200). The Senate Health Education Labor and Pensions committee (HELP) has a bill that has passed out of the committee. The Senate Finance committee, which is the major committee in the Senate with responsibility for the Senate bill, is considering a version which has been developed by a committee of six members (3 Democrats and 3 Republicans), but on which there is no agreement by the committee. If and when this bill passes the committee, it will be merged with the Senate HELP committee bill.

In all versions of a bill being circulated in the Senate, there are prohibitions against pre-existing condition clauses (clauses that deny eligibility based on Down syndrome and other disabilities) and elimination of lifetime caps on benefits. These are positive features of the now-circulated versions.

It is important for advocates to remember that the health care Congressional activity is in an almost constant state of flux, sometimes changing from hour to hour.

A major focus of NDSC's advocacy efforts have been the provision of long-term support services for individuals with disabilities. Virtually all long-term adult services are funded by Medicaid, the major health insurance program for adults with disabilities. Parts of this program are currently being considered during deliberations on the health care reform bills. You can read a side-by-side comparison of the current health care reform bills published by the Henry J. Kaiser Family Foundation at

Long Term Services


The CLASS Plan (Community Living Assistance Services and Supports - formerly called the CLASS Act) is a provision in the Senate HELP Committee bill that would create a national voluntary long-term care insurance program. It was developed to enable all people who are employed, even part time, to purchase an insurance policy for long term support needs. It will also help take pressure off of the Medicaid program which is now the primary source of funding for long-term adult support services. Unfortunately, the insurance industry has recently launched a full scale attack on the CLASS Plan (despite the fact that it will reduce the federal deficit). According to the American Council of Life Insurers, the CLASS Act will not adequately protect Americans who are in need of long-term care, citing the high costs of nursing home care and round-the-clock home health care services as evidence.

However, the CLASS Plan's cash benefit of about $27,000 per year (depending on functional needs) can go a long way to meeting the needs of people with disabilities by paying for support services in their own homes.

Community Choice Act

The Community Choice Act (CCA) would have required states to provide Medicaid community-based support services to all eligible individuals with disabilities (virtually all individuals with Down syndrome). The CCA would have had the effect of eliminating the state waiting lists for adult services (about 300,000 individuals in 2006). However, the CCA is not included in any version of the health care reform bills because of the high cost associated with it.

Community First Choice Option

The Community First Choice Option (CFC) was proposed by Senator Tom Harkin (D-IA), now Chair of the HELP Committee, as a way to get the key provisions of the Community Choice Act in the health care reform bill. The CFC Option would make it optional for states to offer individuals with disabilities the opportunity to receive support services in their homes and communities. The option would not allow caps on the number of individuals served, nor allow waiting lists. Significant enhanced federal matching funds (FMAP) would be provided, depending on cost, to encourage states to select this option. The CFC Option would be a major step in helping to end Medicaid's institutional bias.

The disability community is also working hard to get incentives for states to choose the CFC Option in health care reform bills, by increasing federal Medicaid matching payments that states receive for the Medicaid services it funds. Take Action

Call your Senator with the message found at the top of this Bulletin. To find the name of your Senator, go to and key in your zip code.

Thursday, September 3, 2009

More About Howe Developmental Center

We want to thank the Governor again for his decision to close Howe Developmental Center in Tinley Park. Although it has been a difficult time for family members of clients served by Howe, these individuals are ultimately better off.

We wanted to remind you of this video that we posted a while back:

Thanks for reading Taxpayers For Illinois.

Friday, August 28, 2009

Disability Community Thanks Governor Quinn; Taxpayer Dollars to Be Put To Better Use

In a press release from the Governor's office today, Taxpayers For Illinois learned of the Governor's decision to finally close Howe Developmental Center in Tinley park. The institution has not only proven to be dangerous for clients but also a huge drain on taxpayer money.

The Governor will close the facility based on recommendations from both the Commission on Government Forecasting and Accountability (CGFA), who voted 9-to-3 in favor of closing the facility, and Anne M. Shannon, the former President and CEO of Aspire, who examined the issues regarding providing quality care for residents at Howe Developmental Center. In past months, Shannon met with more than 60 families of current and former Howe residents, advocacy groups, legislators and employees before presenting her recommendations to the Governor. On August 15, upon recommendation from Anne Shannon, Governor Quinn made an unannounced visit to Howe Developmental Center to talk with staff, residents, parents and family members, while also assessing the facility's operations.

Howe Developmental Center currently has 251 residents and 694 staff and the Governor is ensuring a smooth transition for these residents.

We are hoping this decision will be the first in many that help funnel taxpayer funds into humane, community care for Illinois' most vulnerable populations.

Please take a moment to contact your local papers to express your gratitude to Governor Quinn for finally closing Howe Developmental Center.

The Arc Mourns the Loss of its Greatest Legislative Champion


The Arc of the United States and all children and adults with intellectual and developmental disabilities and their families lost its all time legislative champion with the death last night of Senator Edward M. Kennedy (D-MA). His legislative achievements in the field of disability were many and far reaching. Civil rights, education and health care were the cornerstones of his efforts to help all Americans live decent and productive lives. In the rights arena, his most notable achievement was the enactment of the Americans with Disabilities Act in 1990. He played an instrumental role in the passage of Public Law 94-142 in 1975 (now known as the Individuals with Disabilities Education Act) which gave every student with a disability the right to a free appropriate public education. Senator Kennedy was one of four Members of Congress who, along with former President George W. Bush, crafted the No Child Left Behind Act. He was instrumental in assuring that all students with disabilities would be part of the student achievement assessments under this law. Last year, he co-authored the Higher Education Opportunity Act which, for the first time in Federal law, will afford higher education opportunities for students with intellectual disabilities. Other major civil rights accomplishments that helped people with disabilities enter the mainstream of our society include the Fair Housing Act and the Voting Rights Act.

As a steady voice for comprehensive, quality and affordable health care reform, Senator Kennedy pushed hard over his decades of Senate service to expand the National Institutes of Health, created programs to protect pregnant women and children, the Children's Health Insurance Program (SCHIP), the Genetic Information Nondiscrimination Act and the recently enacted Medicare prescription drug expansion. As many have observed, his absence from the Senate this year has significantly hindered the passage of health care reform.

In his role as a member, Ranking Minority Member, and Chairman of the Health, Education, Labor and Pensions Committee, he authored the Developmental Disabilities Act, established Protection and Advocacy Systems in every state, and oversaw several extensions of the Rehabilitation Act, including the addition of Supported Employment and steady increases in the minimum wage.

Senator Kennedy was first elected in 1962 and served six terms. He ranks third in total service in the U. S. Senate. He was often referred to as the "Lion of the Senate". A consummate deal maker, many of his legislative successes were due to his ability to reach across the aisle and secure bipartisan support, sometimes with the most conservative of Senators. He was an electrifying orator, his booming voice resounding off the walls of the Senate chamber. Senator Kennedy did his homework, always exceptionally well prepared for his Committee hearings, bill markups and floor speeches. He was often noted as having the best and most loyal staff on Capitol Hill.

Senator Kennedy often described his interest in disability policy due to his family history. Late in life, his father suffered from a serious stroke. His sister Rosemary was born with an intellectual disability and was sheltered during her adulthood in a private institution. His sister Eunice, who died only two weeks ago, headed up the Joseph P. Kennedy Jr. Foundation and created the Special Olympics. The Senator's two sons also experience disability. Ted Jr. lost a leg to cancer as a child. Patrick, a U. S. Congressman from Rhode Island, has a mental illness.

Senator Kennedy spoke at several events sponsored by The Arc, most notably the Disability Policy Seminar. In 2001, he was the recipient of The Arc's John H. Chafee Leadership in Public Policy Award. Last month, The Arc's President, Lynne Cleveland, announced that Senator Kennedy would be this year's President's Award recipient. This award will now be given posthumously at an event in the near future.

Monday, August 24, 2009

Thank You From Taxpayers For Illinois

In May, after a long winter of debating amongst politicians, social services agencies, citizens and families across the state of Illinois were thrown into a budget crisis. Eventually, many clients served by these agencies were denied services and agencies were forced to give their staff lay-off notices.

Thankfully, due to concerned citizens like you, this crisis has been temporarily averted. Over the past 3 months, you called, e-mailed, wrote letters, sent faxes, protested in Springfield and made personal visits to the Governor and your elected officials' offices. And for that, we want to send you a huge, heart-felt THANK YOU...our efforts as a community of providers, care-givers and concerned citizens were ultimately successful.

State funding has been temporarily restored for a majority of human service agencies through December of 2008!

While many agencies are working towards a model of service that no longer relies on state funding (and the political and draconian slashing of services that come with it), we are always in need of alternative sources of funding.

Taxpayers for Illinois will be here monitoring legislator’s decisions around support for this kind of funding. Thank you for reading and look for more info again after Labor Day.

Thursday, August 20, 2009

Please Call The Governor Regarding House Bill 237

This spring, the General Assembly passed HB 237 without a single “no” vote. HB 237 would include payments for all prevention, intervention, or treatment services and supports for persons with developmental disabilities, mental illness, and alcohol and substance abuse problems, as well as rehabilitation, and early intervention services provided by licensed community-based providers under the Prompt Payment Act. In addition, HB 237 would increase the interest penalty for bills under the Medical Assistance Article of the Illinois Public Aid Code to 2.0% (from 1.0%) after being delinquent for sixty days.

The 60 day deadline for action by Governor Pat Quinn on HB 237 is next Tuesday, August 25th. We need you to call the Governor’s Office in Springfield and Chicago today and urge him to sign HB 237 into law!

Please click here to take action!

Talking Points (if needed):

Not all payments for these services are currently “protected” by the prompt payment act. HB 237 would change that situation.

Community providers are currently experiencing payment delays in excess of 150 days, HB 237 would at least ensure the state is paying interest on those late payments – a common business arrangement.

By signing HB 237, Governor Quinn will be making a statement that he supports community services.

Office of the Governor
207 State House
Springfield, IL 62706
Phone: 217-782-0244

Office of the Governor
James R. Thompson Center
100 W. Randolph, 16-100
Chicago, IL 60601
Phone: 312-814-2121