CHICAGO - President Lyndon Johnson signed into law the bill that created Medicaid and Medicare 47 years ago this week. To mark the anniversary, demonstrators have been taking to the streets of Chicago to protest Medicaid cuts they say threaten their lives and independence.

Shea Ako protests for his 16-month-old son Alejandro, who has a disability known as spinal muscular atrophy. He says the budget cuts could put his son in an institution, even though he's thriving at home.

"Our therapists, our doctors, everybody we work with, they are all so excited because he's doing so well. He really is thriving. We wouldn't trade Alejandro for the world. He's the greatest kid ever. He has this disability. He's doing great. He's happy."

The in-home care is covered by what is known as an MFTD, "medically-fragile, technology-dependent" waiver, which has been cut, but restored temporarily. The state says the cut will save millions of dollars, but MFTD parents say institutionalizing their children will cost even more and won't provide better care.

For Alejandro, his dad says in-home care costs $19,000 a month, compared with $55,000 in an institution.

Because Alejandro is not able to play physically the way other children do, but cognitively he's perfectly normal, his parents spend a lot of time adapting activities so that he can enjoy life to the fullest. And someone is always there to clear his airways when he has trouble breathing.

Ako is afraid his son would not survive in an institution if left alone even for a couple of minutes.

"It happens on a regular basis where he has respiratory episodes. If there was somebody checking on him every 15 minutes, he wouldn't last a week."

Adam Ballard, housing coordinator for the disability-rights group Access Living of Metropolitan Chicago, also faces problems because of the Medicaid cuts. He is a father of two young children who uses a wheelchair and depends on a personal attendant to help him get ready for work in the morning and at home at the end of the day. His in-home service hours will be cut and he says it makes no sense. In general, he says studies show that for the cost of one person in a nursing home the state can pay for home care for three people.

Ballard says Illinois has started to shift dollars, but not enough.

"We're still at about 65 percent of all Medicaid money in the state goes to institutional care. Only about 35 percent goes to in-home care. We really want to see that get closer to 50-50 at the very least."

The protesters are hoping that state lawmakers will reconsider Medicaid cuts during the fall veto session. The MFTD waiver is the subject of a lawsuit and is under review for 90 days.

More information is at www.savemftdwaiver.com and at tinyurl.com/cxou2a3.




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At the start of the pandemic, at-home caregivers in Washington state saw their wages go up with a boost from hazard pay. Two years later, inflation is erasing the pay bump.

Wages actually have gone up for caregivers from $19 per hour in May 2020 to $19.26 today, but inflation means the purchasing power of their pay now is actually $17.46.

Gwen Goodfellow, an at-home caregiver, said the increase was welcome at first.

"Having the hazard pay was really nice. It made us feel more comfortable to do, like, grocery orders instead of going to the store and allow us to be a little bit more protective," Goodfellow acknowledged. "Then, as time went on, the cost of things went up, and it's not a bonus at this point."

Goodfellow's union, Service Employees International Union Local 775, was instrumental in negotiating hazard pay for caregivers. Hazard pay was offered to essential workers who were in vulnerable positions as COVID-19 spread.

Goodfellow looks after her mother and a friend, as well as taking care of her son, and pointed out caregivers are struggling.

"Good pay for caregivers is really important," Goodfellow asserted. "I mean, we help seniors, we help people with disabilities. I know my situation isn't unique. I hate to say it, but sometimes it feels like I kind of almost chose poverty so that I could care for my family."

Goodfellow added benefits beyond pay are important as well, such as affordable health care, retirement and paid time off which does not inhibit her ability to pay the bills.

The baby-formula shortage has hit families in Arkansas hard, and one Little Rock resident aims to alleviate the stress on parents by creating an interactive document, which shares where to find formula in the state.

Supply-chain disruptions and a recent product recall have been connected to the empty store shelves parents have encountered.

Allison Grigsby Sweatman, a clinical social worker in Central Arkansas, was inspired to create an interactive spreadsheet to help families find formula after hearing from people she works with about the challenges they are facing trying to feed their babies.

"The way that this has affected families with babies who have been depending on formula, it cannot be overstated the crisis this would create in a family system," Sweatman explained. "I've heard about families spending every free moment that they have trying to get the formula that they need for their child."

The Food and Drug Administration and Abbott announced Monday night they reached a deal to resume operations at a shutdown Michigan plant, with production possibly able to restart in the next two weeks.

As of May 8, nationwide out-of-stock rates for baby formula continued to climb and stood at 43%.

Sweatman pointed out the shared spreadsheet is broken down by county, showing where people can find the formula at a store in their county or someone in their community who has formula to give away. She added contributing to the formula finder is one way to give back to your community.

"What an organized approach to meeting this need can offer is everyone can help," Sweatman emphasized. "There's something everyone can do to help us feed our children right now. Even those who are not directly affected who would turn away because it's just too big of a problem to try to solve, with this they have an opportunity to help."

Sen. Tom Cotton, R-Ark., introduced legislation last week which would require President Joe Biden to submit a report to Congress within 30 days detailing the steps the administration is taking to end the formula shortage.

The gaps in the U.S. health care system were exposed during the COVID-19 pandemic, with racial health inequities laid bare.

On Monday, Philadelphia lawmakers announced $13.8 million in state funding to improve public-health outcomes for all city residents.

In May 2020, data collected by Drexel University showed that Black residents made up 45% of known COVID cases, while white residents made up 15% of cases.

State Sen. Vincent Hughes - D-Philadelphia - said while residents struggled with these public health disparities, community health organizations stepped up to provide resources like testing and vaccines directly to those who needed them most.

"The other thing that was revealed was this incredible commitment by people all across Pennsylvania," said Hughes. "But let's start right here in North Philadelphia, who decided to rise up and say, 'I'm not going to watch the problem, I'm going to make a difference in the problem.'"

Five million dollars of the funding will go toward creating mobile health clinics, along with $3 million in health equity grants and $2 million in grants to address mental health and trauma.

State leaders also announced checks for community health organizations, including $2.8 million for the Pennsylvania School-Based Health Alliance for behavioral health services and $1 million for the Black Doctors Consortium.

Tracy Wood, executive director of the consortium, said people's ZIP codes should not determine their public health.

"We should have access to going to the doctors, getting a physical every six months," said Wood. "Over our past two years of service, administering over 100,000 COVID-19 tests and vaccines, we found access was a major barrier to quality health care."

The Black Doctors Consortium hosted "pop-up" testing and vaccine clinics in Philadelphia neighborhoods with high infection rates and low vaccination rates. In October, the consortium opened a clinic offering primary-care and behavioral-health services in North Philadelphia.