Roughly 10 years ago, Fran Madnick spent four years in a nursing home. She said “it was not living”, adding that she would rather live on the street than go back.
“I am a consumer for personal assistance ... PA’s are an extension of my life,” said the 67 year-old retired teacher who, because of fibromyalgia and almost 100 percent vision loss in both eyes, qualifies for five hours of home care every day.
Madnick relies on Medicaid to pay for her personal assistance (PA). According to Madnick, the health care professionals help her with everything from laundry and cleaning, to grocery shopping and trips to the city. She says home care allows her to be independent because she isn’t forced to abide by a nursing home’s schedule.
“If I didn’t have them I wouldn’t be able to be here today, I wouldn’t be able to be a mother or a grandmother,” she said. “If they cut back my hours, that’s one thing, but if they cut me out of the program itself ... That could mean I’d have to go back to the nursing home, and I refuse.”
Madnick was one of roughly two-dozen protesters to rally outside of the Illinois Department of Human Services’ (DHS) Chicago office on Friday morning. Demonstrators called on DHS Secretary Michelle Sadler to include people with disabilities in the decision-making process regarding changes to the state’s Home Services Program.
In June, Illinois was the 16th state to get approved for the federal Balancing Incentive Program (BIP), which is funded through the Affordable Care Act (ACA) and provides states grants to upgrade their long-term home care systems.
Under BIP the state is projected to receive roughly $90 million to support non-institutional, long-term services and supports. Also, Illinois, which receives a Federal Medical Assistance Percentage (FMAP) of 50 percent, will be eligible for a 2 percent FMAP increase if it meets all of the BIP guidelines. FMAP indicates how much the federal government matches for state expenditures on certain social services.
Structural changes to Illinois’ community-based and home care could soon include a “no wrong door” entry point system, which aims to create a single, streamlined system of information and access for all persons seeking long-term care. The federal BIP also requires conflict-free case management services, which attempts to eliminate conflicts of interest with managers who are responsible for determining eligibility for community-based and home care services.
To qualify for an increased FMAP, Illinois must implement “core standardized assessment” instruments, meaning the state must adopt a unified assessment tool for home service eligibility requirements for every applicant, ranging from seniors to people with cognitive disabilities to people with physical disabilities.
“A universal assessment tool could make it harder for people to qualify for home services,” said Tom Wilson, community development organizer for health care at Access Living, who helped organize Friday’s protest.
“With this new assessment tool there’s a lot of opportunity for the state to cut people’s home care hours, which they could say saves them money, but we want to keep people living in the community with a high quality of life,” Wilson explained.
Access Living submitted a list of demands to Sadler, which included a request for people with disabilities to have a seat at the table when government agencies negotiate the home care eligibility requirements under the unified assessment tool.
“Who knows more about home care services than the people who get them,” asked Wilson. “We just don’t trust the state to make these decisions for us.”
The Save Medicaid Access and Resources Together (SMART) Act, signed into law by Gov. Pat Quinn in June, 2012, cut $1.6 billion from 62 Medicaid programs, including podiatry and dental services. Roughly 23 percent of Illinois’ Medicaid budget was slashed, prompting Wilson to assume the state will probably once again try to save money at the expense of Medicaid-funded services, such as home care hours.
“Too many people are getting less hours than what they need,” said Wilson. “But I think the state would argue with me on that. They think people get more home care hours than what they need.”
Meanwhile, Madnick said the cuts to Medicaid have made it difficult for her to pay for everyday necessities. After she paid for all of her bills and medication last month, Madnick said she only had about $10 left over for personal expenses, including food.
“Any new cuts to Medicaid would seriously prevent me from living a productive life,” she said.
Here’s more from Madnick and Friday's demonstration:
Also included in Access Living’s list of demands for DHS is a request to immediately end its contract with Maximus Health Services Inc., which was hired under the SMART Act to investigate Medicaid fraud.
In June, an arbitrator ruled the state must terminate the privatization deal by December 31 because it was found to violate the state’s union contract. But members of Access Living say the contract should be dropped as soon as possible.
“Their incentive is to get people off of health care,” said Wilson. “We think people should have a right to health care. The state, on the other hand, is trying to save money by hiring a private company and incentivize them to reduce the Medicaid rolls.”
Access Living also wants the state to adopt the Community First Choice Option, which would increase the state’s FMAP by 6 percent and the availability of home care services, prioritizing them over institutionalized care.
But, Wilson said, state officials may be worried that the program would result in a surge of people immediately applying for services, which could lead to a loss of money.
“They’ve just assumed everyone on the home care waiting lists would come in the first year,” he said.
More than 56 million people were living with disabilities in the U.S. in 2010, according to the U.S. Census Bureau.
There are an estimated 900,000 people living with disabilities in the state of Illinois today, according to Access Living.
“We, the disabled, know the state of Illinois is talking about re-evaluating the Home Services Program, without asking us — the people it mostly affects us, the disabled,” said Henry Williams, a member of Access Living, who participated in Friday’s rally.
Williams was one of five Access Living members to deliver the disability advocacy group’s list of demands to DHS.
“Put us at the table, we must be at the table,” Williams stressed.