SPRINGFIELD, Ill. - Starting next week, thousands of people with disabilities and the home healthcare workers who assist them could be affected by Illinois' new overtime-pay policy.

On May 1, the state begins enforcing a strict 40-hour workweek limit on home-care providers.

Advocacy groups in Illinois argue the move bypasses new federal rules that extend overtime protections to these workers.

Adam Ballard, organizing and policy manager for Access Living, says the policy essentially allows the state to avoid paying overtime, which has consequences not only for caregivers, but for the people who rely on those services.

"For people who have live-in personal attendants, those kind of workers often go over 40 hours a week," says Ballard. "It becomes a huge problem for families in that situation, where there's actually a live-in attendant who's often, but not always, a family member of some kind."

But Illinois' Department of Human Services says overtime cuts are needed, as the state can't afford any extra payments due to the months-long budget impasse.

Ballard says he sympathizes with the state's need to rein in spending on some services or create more revenue to balance the budget. But he also believes scaling back on home-care for some of Illinois' most vulnerable residents isn't the way to go.

"The bigger picture is, our state, in order to have a just budget that works for everyone," says Ballard. "Especially in this program, is to find real revenue solutions, where people who can afford to pay more in taxes are paying more in taxes."

Groups including Access Living and SEIU Healthcare Illinois are urging Gov. Bruce Rauner to make last-minute changes to the overtime policy this week, before it goes into effect.


get more stories like this via email

By Tim Spears for WISH-TV.
Broadcast version by Joe Ulery for Indiana News Service reporting for the WISH-TV-Free Press Indiana-Public News Service Collaboration

In the face of Medicaid cuts, autism advocates in Indiana are focusing on protecting coverage of a popular therapy.

As News 8 reported, the Indiana Family and Social Services Administration will reduce Medicaid coverage of applied behavior analysis, or ABA therapy. Individuals will be limited to between 30-38 hours of ABA per week, depending on their diagnosis, and will only be covered for a total of 36 months. 

That three-year coverage cap was initially planned to be retroactive, but the FSSA changed course this past Friday following widespread pushback. The changes go into effect April 1. 

Parents like Jana Tiede believe ABA coverage should be based on existing need, not how long a person has needed it.

“With the help of ABA she’s really starting to put together those social connections,” Tiede said. “Just to say that an arbitrary three-year mark for someone like Ryah, that doesn’t seem appropriate to me.”

ABA therapy is behavior based, helping individuals with autism improve communication, socialization, and development. 

When the FSSA first proposed cuts to ABA coverage, Tiede said she reached out to her local lawmakers, State Rep. Hunter Smith (R-Zionsville) and State Sen. James Buck (R-Tipton Co.). 

She said she felt ignored when neither responded. 

“I was really hoping that a dialogue could be created and it was pretty disappointing,” Tiede said. 

The Autism Society of Indiana (ASI) is planning an advocacy day at the statehouse, Monday, so people can directly share their stories with lawmakers face to face. 

“We feel a lot of lawmakers don’t even know what autism is,” ASI Dir. of Training & Legislation Rachel Deaton said. “If a lawmaker understands what a parent is going through, from the time they wake up to the time they go to bed and how much ABA is helping them, they might be willing to advocate for it.”

Indiana is trying to get ABA spending under control after an audit found the state made at least $56.5 million in improper Medicaid payments for ABA services over the course of a year. 

The ABA cuts also come as the Braun Administration initiates a larger Medicaid crackdown by increasing eligibility checks, supporting legislation to add work requirements and enrollment caps, and ordering providers to stop advertising Medicaid programs. 

John Lotz, whose son Drake went through ABA, believes these changes are focused on regulating the parents rather than providers. 

“Our children are discriminated against every day,” Lotz, an advocacy leader with Indiana Profound Autism Alliance, said. 

He wants the FSSA to avoid implementing the three-year cap, and instead base coverage on need. He also doesn’t think it will do much to curb improper billing. 

“You’re really not going to hurt the [ABA] centers because they’re just going to re-adjust their business model to bring in more kids for fewer hours,” Lotz said. “The ones that are going to be pushed out are the ones with the greatest needs.” 

ASI will be at the statehouse from 9 a.m. to 2 p.m. Monday. Deaton emphasizes there are no plans for a protest, but the organization will inform people how to advocate for policies to protect people with autism.


Tim Spears wrote this article for WISH-TV.


get more stories like this via email

New York disability rights advocates want state lawmakers to focus on issues such as housing and health care.

In the budget, they want more funding for mental health crisis units and to grow the mental health workforce. New York is facing a shortage in all aspects of mental health care, which keeps people from being able to access necessary services.

Sharon McLennon-Wier, executive director of the Center for Independence of the Disabled New York, said they are also advocating for a bill creating accessible prescription labels.

"There's a bill right now for people that are blind or have print disabilities to make sure they are able to read and understand their prescriptions," McLennon-Wier explained. "A lot of labels are difficult for seniors as they have vision loss or people that have dyslexia or other reading disabilities to understand."

For now, at least 10 states have laws in place ensuring pharmacies provide accessible prescription labels. A handful of states such as New York are considering similar laws. Gov. Kathy Hochul's budget proposal also invests in mental health care.

McLennon-Wier feels the money should go toward life-changing treatment which is not forced on people who need help.

There could be challenges to ensuring the laws are passed and some programs are properly funded. Along with competing priorities, McLennon-Wier feels federal challenges could harm New York's progress on disability rights.

"If we look at our federal system, there's not enough compromise, I think," McLennon-Wier observed. "There's not enough funding. I mean, New York State has a rich budget, many, many, many billions of dollars. So, we need to be able to work together to address the problem and have some equity."

While lawmakers are addressing some priorities, McLennon-Wier feels it is not enough. She noted the Long-Term Care Ombudsman Program, which provides statewide oversight of nursing homes, is getting more funding but based on previous recommendations, it is not enough to be effective.

Oregon's right to repair law, which increases consumers' ability to repair their own electronics, takes effect this week.

The law requires manufacturers to provide access to replacement parts, tools, manuals, as well as digital keys needed so people can fix their own devices.

Charlie Fisher, state director of the Oregon State Public Interest Research Group, helped author the law. He said it needs to go further, which is why, along with disability justice advocates, he is pushing for wheelchairs to be included. Fisher pointed out the current process for getting wheelchairs fixed is overly complicated and takes months.

"Just simple barriers that shouldn't exist are really what we're trying to address in this wheelchair right to repair law," Fisher explained. "It just seems like common sense."

Fisher noted Sen. Janeen Sollman, D-Hillsboro, will introduce two bills this year to expand the right to repair law. One bill would add protections for wheelchairs, the other would simplify the repair process when going through Medicaid.

Wren Grabham, a disability justice activist, has been working on the bills and said additions to the law would require wheelchair manufacturers to post their manuals and allow a person to fix their chair without voiding their warranty.

Grabham noted when she was 16, her electric wheelchair began shutting off and giving an error code. Because there was no public manual for the chair, she did not know what the code meant or if the chair was safe to keep driving. Grabham added fixing it included getting insurance approval, so it took a long time.

"I had to pretty much use an old chair that didn't fit me for six months," Grabham recounted.

Grabham emphasized even simple, routine fixes, like getting a new tire or battery for her chair, take months because she has to prove new parts are needed.

"Even though it's something that we could fix in a weekend, if we were able to actually get the parts to fix them," Grabham stressed.

The Public Interest Research Group's research found being able to fix phones, computers and appliances instead of buying new ones will save the average Oregon household more than $300 a year.


get more stories like this via email