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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CONCORD, N.H. - New Hampshire advocates for affordable healthcare access want Congress to lower prescription costs by allowing Medicare to negotiate with drug companies.

Drug prices have risen faster than any other facet of medicine, and Laura Lynch - a 62-year-old New Hampshire resident who's covered by Medicare and Social Security Disability Insurance - said she spends $300 to $350 a month just on co-pays for medications for herself and her husband.

They're also receiving collection notices, because Lynch said they can't afford the ambulance bills from a heart attack her husband had in February.

"This is ridiculously hard," said Lynch. "Sometimes I just want to cry, because I don't know where it's going to come from, the next penny or dollar to pay these bills. I am so for 'Medicare for All.' But I'm also so for them fixing Medicare, so that situations like this don't come up and we lose everything."

President Joe Biden's budget plan includes improvements to Medicare, such as allowing negotiations with drug companies. Lynch adds for her and many others, it's urgent that Congress take action.

Today is the 56th anniversary of Medicare and Medicaid, which together provide health coverage to more than 120 million people.

Zandra Rice Hawkins, executive director of the group Granite State Progress, said drug companies have a monopoly to set their own prices. She noted other government programs already negotiate with drug companies, and sometimes pay half of what Medicare pays for medicines.

She said allowing Medicare to negotiate would make prescriptions much for affordable for all consumers.

"Lawmakers have not taken meaningful action over the last decade to rein in drug corporations power to price gouge," she said, "despite strong support for policies like Medicare negotiations among all voters of all political persuasions."

The White House plan also would close the Medicaid coverage gap - New Hampshire has expanded its Medicaid program, but in the dozen states that have not, more than two million people don't fit the eligibility requirements, but also can't afford employer-based or marketplace health insurance.

LANSING, Mich. -- Advocates for home- and community-based services in Michigan urged Congress to build off state efforts and invest in what's become known as the "care economy."

President Joe Biden's American Jobs Plan includes $400 billion to expand access to Medicaid home- and community-based services for seniors and people with disabilities, and to strengthen the care workforce.

Kelly Garrett, Michigan state director for Care in Action, said making investments will help keep people in their homes and communities for longer than they would be otherwise.

"We need to pay our essential workers, our domestic workers, our care workers a livable wage," Garrett asserted. "Also, people that need care should be able to get cared for in place in their homes, or wherever they choose to be cared for."

Michigan's paid medical-leave law went into effect in 2019, and applies to any employer with more than 50 workers, but domestic workers often do not fit the criteria.

Garrett joined a roundtable with people who rely on home-based and community services, caregiver advocates and lawmakers. She argued more progress is needed, and the White House plan would support well-paying caregiver jobs with benefits and collective bargaining rights.

Women, and especially Black, brown and Indigenous women, are more likely to leave the workforce to care for a family member, which became all the more evident during the pandemic.

Garrett added care infrastructure, such as home and community-based services as well as child care and paid family and medical leave, are so important because everyone needs care at some point in their lives.

"Everyone's gonna have this situation," Garrett explained. "Either you're going to be the caregiver, or you're going to need to be cared for. It just happens. And so passing this bill allows people to age with dignity, and to be taken care of with dignity."

Home- and community-based services can look different for different people, ranging from meal services and transportation to doctors' appointments, or having a personal aide come in to help get ready for the day and manage their medicines, or speech or occupational therapy at home or at a community facility.

Garrett urged Michiganders to contact their lawmakers and let them know how urgently needed the legislation is.

MINNEAPOLIS - As COVID cases trend upward again, public-health experts are setting the record straight on certain storylines about new infections.

Minnesota's seven-day average for new COVID cases had dipped below 100 earlier this summer. Now, it's nearing 300. Health officials blame the combination of the Delta variant spreading and a slower rate of vaccinations.

For some who elected to get the shots, there are instances of infections. But David Dowdy, an epidemiologist at the Johns Hopkins Bloomberg School of Public Health, said the vaccines still work; there are just some key things to remember.

"They give your immune system a jump-start on the virus, but every now and then, that jump-start is not quite enough to prevent an infection," he said. "Almost always, it's going to be enough to prevent you from getting really, really sick."

He said no vaccine is perfect. However, the federal Centers for Disease Control and Prevention has noted that fewer than 1% of COVID deaths and hospitalizations have been tied to fully vaccinated individuals. Despite the rarity of breakthrough cases, Dowdy said it's important to be cautious in public settings to prevent major spikes again, noting the risk for vulnerable populations, such as older adults, even if they've been vaccinated.

As for vaccination rates, groups such as AARP have raised concerns about benchmarks for staff members at places such as nursing homes.

Dowdy said there are many reasons some people are hesitant to get a shot, including in communities overlooked by public-health offices. However, he suggested that it's reasonable to take a closer look at places such as assisted-living facilities.

"That does change the calculus a little bit," he said. "You're not just thinking about yourself now; you're thinking about the people that you're having to come in contact with on a daily basis."

In its latest nursing home COVID-19 dashboard, AARP said just 17% of Minnesota nursing homes have met an industry target of having at least 75% of staff fully vaccinated. Overall, 88% of the state's nursing-home residents have completed the immunization cycle, compared with 62% of all staff.