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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This week, Gov. Joe Lombardo vetoed Senate Bill 239, which would have allowed medical aid in dying in Nevada.

The bill would have given mentally competent and terminally ill adults the option to obtain a medical prescription for a peaceful death if they chose to use it.

Hanna Olivas, a terminally ill Nevadan who voted for Lombardo, said she is disappointed, angry and frustrated, calling his decision a "cowardly act." Olivas acknowledged no one wants to think about dying, but for those with terminal illnesses, preparation and keeping their medical autonomy is paramount.

"I absolutely do not want to be in a hospital or in hospice," Olivas emphasized. "And the governor is basically saying 'Well, too bad. Too bad for you. Too bad for your family. And too bad for any other person who is facing a terminal diagnosis.'"

In a statement, the governor said, "while end-of-life decisions are never easy," he could not support a bill allowing what he terms "physician-assisted suicide." He also said he did not feel "comfortable" signing the bill into law due to "recent progress in science and medicine."

Sara Manns, Nevada campaign director for the Compassion & Choices Action Network, called it "absurd and cruel" for the governor to suggest palliative care can alleviate suffering at the end of life, when it is not always the case.

Manns said state lawmakers heard testimony confirming the realities from patients' families and from doctors. Manns thinks the veto statement disregards Nevadans and their experiences.

"We have to really examine what happened here, and figure out how we're going to win in light of this veto, which went against record high polling numbers in support of aid-in-dying access for Nevadans," Manns pointed out. "Thousands of phone calls, thousands of petitions, thousands of emails."

Manns added advocates are already looking at different strategies to continue their fight to grant the right to medical aid-in-dying to terminally ill Nevadans.

North Dakota officials are urging people receiving health coverage through a key public program to stay on top of their renewal if they are still eligible. It follows the end of pandemic rules for Medicaid. At the start of the COVID crisis, Congress paved the way for states to keep people continuously enrolled in Medicaid. But with the public health emergency over, states such as North Dakota are unwinding the provision.

Krista Fremming, interim medical services division director of the North Dakota Department of Health and Human Services explained when they recently sent out renewal notices, only one in three people returned them. She pointed out it is possible that some people found other options, but her team suspects many who still need help did not take the necessary steps to secure it.

"For the forms that were returned, about seven in ten people still qualified," she added. "So, that gives a good indication that many of the unreturned forms are for people who would still qualify. And we want to continue their coverage, if they do. "

She said more than 4,000 people were disenrolled last Wednesday. The state carried out a media campaign, as well as outreach with providers, in hopes of ensuring recipients knew the forms were mailed to them. Fremming said the state is exploring other ways to connect with members. Those who were disenrolled have 90 days to return the forms to receive back-dated Medicaid coverage if they still qualify.

Fremming added they are especially worried about households with children losing coverage.

"We know that getting vaccinations and having access to dental care and behavioral health services are so important to laying a strong foundation for children as they grow up," she continued.

North Dakota has an auto-renewal process to make it easier for staff to verify if an individual still qualifies for coverage. But Fremming said it is still new and limited, and added it does not include people who have self-employment income, or who are subject to asset tests. Meanwhile, renewal forms are mailed out around the 20th of each month and are due within 30 days.


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Nevada has received an overall score of 43 in the nation for the health and well-being of its seniors in the state. According to the United Health Foundation's 2023 Senior Report, the Silver State's older adults fare well when it comes to lower rates of obesity, drinking and inactivity. The state is facing challenges related to high suicide and high poverty rates, as well as low flu vaccination rates among older Nevadans.

Dr. Rhonda Randall, Chief medical officer for United Healthcare, said when it comes to suicide, they are noticing more prevalence in some groups over others.

"We see that it disproportionately affects white men, and older white men because they have a tendency to choose more lethal means with suicide attempts," she explained. "They're more successful, and that's what we see in the trend here. It has been persistent for quite some time."

Randall added the report consists of 52 different measures of senior health across five different categories, including socioeconomic factors, the physical environment where seniors live, the clinical care they receive, behaviors and other health outcomes.

Nevada saw a 15% drop from just over 30 aides per 1,000 adults ages 65 and above in 2018 to 26 per 1,000 adults in 2021. The state also saw an 8% increase in early deaths among older adults. Randall said opioid overdoses led to an increase in premature deaths, and added that reflects "the same troubling trend" prevalent in other populations in the United States; seniors are not untouched.

"Why I highlight that as a geriatrician is, I think, a lot of people don't think that seniors are as affected by substance-use disorders and opioid-use disorder - but they are," she said.

Randall added it is concerning that as a country, many of the gains made in recent years related to longevity and an increase in life expectancy have started to reverse. Her group is calling for greater connectivity and community engagement among seniors in Nevada and across the country.