SEATTLE – Dos legislaciones aprobadas este año en el estado de Washington facilitarán a los padres el proceso de solicitud para convertirse en los cuidadores de sus hijos.

La Presidenta de SEIU 775, Sterling Harders, dice que su unión representa a miles de padres que cuidan de sus pequeños con discapacidades intelectuales y del desarrollo.

Por estos miembros supo que cuando sus pequeños cumplían 18 años, conseguir su tutoría exige un trámite caro y complejo, lo que a veces hace necesario recurrir a un abogado para comprender el proceso. Además hay diferencias de un condado a otro. Harders dice que dos piezas de legislación están abordando estos problemas, ayudándoles un poco a los padres con la carga.

“La vida es ya muy difícil para quienes tienen que cuidar a pequeños con necesidades especiales. No necesitan otra preocupación, así que esperamos que estas dos iniciativas les faciliten un poco la vida a los padres.”

La Ley del Senado 5604 de Custodia Uniforme (“Uniform Guardianship Act, Senate Bill 5604”) estandarizará el proceso de custodia en los 39 condados del estado y creará un sistema de monitoreo y un modelo de programa de capacitación. La iniciativa se encuentra en el escritorio del Gobernador Jay Inslee.

La otra medida, la “House Bill 1329”, crea alternativas para una custodia legal total. La iniciativa fue firmada en abril y entra en vigor al final de julio.

Shannon Beigert es madre de dos pequeños con necesidades muy diferentes. Es la guardiana legal de su hija, quien tiene una discapacidad intelectual. Y su hijo tiene autismo, que se manifiesta como una conducta retadora y opositora hacia ella y su esposo, lo que les ha llevado a recurrir a un cuidador externo para él.

Dice que las leyes que establecen patrones uniformes para todos no funcionan para personas tan diferentes como sus dos hijos.

“En el mundo actual, o eres una persona incapacitada o eres una que no está incapacitada con todos sus derechos legales, y crear una oportunidad para que haya opciones diferentes dentro de esa gama es, yo pienso, muy importante.”

Beigert agradece la capacidad de los legisladores del estado de Washington para ayudar a los más vulnerables.

La iniciativa SB 5604 puede ser consultada en: app.leg.wa.gov/billsummary?BillNumber=5604&Initiative=false&Year=2019; la HB 1329, en: app.leg.wa.gov/billsummary?BillNumber=1329&Year=2019&Initiative=false

Today is National Healthcare Decisions Day, a day when everyone is encouraged to review their end-of-life planning. The 2024 Alzheimer's Association annual report predicts that the number of Americans 65 and older who are living with the most common form of dementia will double from nearly 7 million to 14 million patients by 2050.

Jessica Empeño, national director of clinical engagement with the end-of-life advocacy group Compassion & Choices, said legal matters are just part of the equation.

"The most important part is to have conversations about what matters most to you, what your wishes are, and share those things, not only with your family and your loved ones but with your health-care team," she explained.

People may want to put in writing who they want to be able to make decisions on their behalf once dementia progresses. They might consider whether in the future they would be OK with things like artificial hydration or nutrition, aggressive treatments or surgeries.

Compassion & Choices' website offers a free End of Life Decisions tool and a Dementia Values & Priorities Tool that helps people communicate and document their future health-care wishes, both for those who have early-stage dementia or those who just want to be prepared for the possibility.

Angela Schultz, California state advocacy director for Compassion & Choices, said people need to make a plan sooner rather than later.

"We just did recent polling, and 93% of Americans said that having an advanced directive and a health-care proxy and sharing that with your doctor is very important. But only 37% of Americans have done that," she said.

National Healthcare Decisions Day falls on April 16th, the day after tax day. It is a reference to the famous quote from Benajmin Franklin that "In this world, nothing is certain but death and taxes."

By Sarah Jane Tribble for KFF Health News.
Broadcast version by Eric Tegethoff for Illinois News Connection reporting for the KFF Health News-Public News Service Collaboration

For Cindy Westman, $30 buys a week's worth of gas to drive to medical appointments and run errands.

It's also how much she spent on her monthly internet bill before the federal Affordable Connectivity Program stepped in and covered her payments.

"When you have low income and you are living on disability and your daughter's disabled, every dollar counts," said Westman, who lives in rural Illinois.

More than 23 million low-income households - urban, suburban, rural, and tribal - are enrolled in the federal discount program Congress created in 2021 to bridge the nation's digital connectivity gap. The program has provided $30 monthly subsidies for internet bills or $75 discounts in tribal and high-cost areas.

But the program is expected to run out of money in April or May, according to the Federal Communications Commission. In January, FCC Chairwoman Jessica Rosenworcel asked Congress to allocate $6 billion to keep the program running until the end of 2024. She said the subsidy gives Americans the "internet service they need to fully participate in modern life."

The importance of high-speed internet was seared into the American psyche by scenes of children sitting in parking lots and outside fast-food restaurants to attend school online during the covid-19 pandemic. During that same period, health care providers and patients like Westman say, being connected also became a vital part of today's health care delivery system.

Westman said her internet connection has become so important to her access to health care she would sell "anything that I own" to stay connected.

Westman, 43, lives in the small town of Eureka, Illinois, and has been diagnosed with genetic and immune system disorders. Her 12-year-old daughter has cerebral palsy and autism.

She steered the $30 saved on her internet toward taking care of her daughter, paying for things such as driving 30 minutes west to Peoria, Illinois, for two physical therapy appointments each week. And with an internet connection, Westman can access online medical records, and whenever possible she uses telehealth appointments to avoid the hour-plus drive to specialty care.

"It's essential for me to keep the internet going no matter what," Westman said.

Expanding telehealth is a common reason health care providers around the U.S. - in states such as Massachusetts and Arkansas - joined efforts to sign their patients up for the federal discount program.

"This is an issue that has real impacts on health outcomes," said Alister Martin, an emergency medicine physician at Massachusetts General Hospital. Martin realized at the height of the pandemic that patients with means were using telehealth to access covid care. But those seeking in-person care during his ER shifts tended to be lower-income, and often people of color.

"They have no other choice," Martin said. "But they probably don't need to be in the ER action." Martin became a White House fellow and later created a nonprofit that he said has helped 1,154 patients at health centers in Boston and Houston enroll in the discount program.

At the University of Arkansas for Medical Sciences, a federal grant was used to conduct dozens of outreach events and help patients enroll, said Joseph Sanford, an anesthesiologist and the director of the system's Institute for Digital Health & Innovation.

"We believe that telehealth is the great democratization to access to care," Sanford said. New enrollment in the discount program halted nationwide last month.

Leading up to the enrollment halt, Sen. Peter Welch (D-Vt.) led a bipartisan effort to introduce the Affordable Connectivity Program Extension Act in January. The group requested $7 billion - more than the FCC's ask - to keep the program funded. "Affordability is everything," Welch said.

In December, federal regulators surveyed program recipients and found that 22% reported no internet service before, and 72% said they used their ACP-subsidized internet to "schedule or attend healthcare appointments."

Estimates of how many low-income U.S. households qualify for the program vary, but experts agree that only about half of the roughly 50 million eligible households have signed on.

"A big barrier for this program generally was people don't know about it," said Brian Whitacre, a professor and the Neustadt chair in the Department of Agricultural Economics at Oklahoma State University.

Whitacre and others said rural households should be signing up at even higher rates than urban ones because a higher percentage of them are eligible.

Yet, people found signing up for the program laborious. Enrollment was a two-step process. Applicants were required to get approved by the federal government then work with an internet service provider that would apply the discount. The government application was online - hard to get to if you didn't yet have internet service - though applicants could try to find a way to download a version, print it, and submit the application by mail.

When Frances Goli, the broadband project manager for the Shoshone-Bannock Tribes in Idaho, began enrolling tribal and community members at the Fort Hall Reservation last year, she found that many residents did not know about the program - even though it had been approved more than a year earlier.

Goli and Amber Hastings, an AmeriCorps member with the University of Idaho Extension Digital Economy Program, spent hours helping residents through the arduous process of finding the proper tribal documentation required to receive the larger $75 discount for those living on tribal lands.

"That was one of the biggest hurdles," Goli said. "They're getting denied and saying, come back with a better document. And that is just frustrating for our community members."

Of the more than 200 households Goli and Hastings aided, about 40% had not had internet before.

In the tribal lands of Oklahoma, said Sachin Gupta, director of government business and economic development at internet service provider Centranet, years ago the funding may not have mattered.

"But then covid hit," Gupta said. "The stories I have heard."

Elders, he said, reportedly "died of entirely preventable causes" such as high blood pressure and diabetes because they feared covid in the clinics.

"It's really important to establish connectivity," Gupta said. The end of the discounts will "take a toll."


Sarah Jane Tribble wrote this story for KFF Health News.


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Nearly one million Ohioans have been diagnosed with diabetes, but the cost of insulin continues to be a barrier for people needing the medication.

Policy Matters Ohio Budget, Health and Child Care Researcher Kathryn Poe said the cost of insulin can reach hundreds of dollars - but with insurance the range is on average $50 to $80, not including the cost of supplies.

Poe said the increasing cost of the medication, especially over the past decade, has been driven by the three pharmaceutical companies that control the market: Eli Lilly, Novo Nordisk and Sanofi.

"We have a situation where only three companies are able to control basically the global supply of insulin," said Poe. "And in the United States, where there aren't proper checks and balances to regulate these companies, that means that there are unaffordable costs."

Researchers from Yale University found that among people who use insulin, nearly 1.2 million were financially burdened by their health-care spending over the course of a year.

A bipartisan bill filed earlier this year by state House lawmakers would cap out-of-pocket costs for insulin.

Poe says if passed, Ohio would follow other states that have passed insulin-affordability legislation that caps the cost of copays at around $35 for people with insurance.

"The one that's currently introduced in the Legislature, HB 384, actually caps the cost of supplies as well," said Poe, "which is really, really important."

While the Inflation Reduction Act capped out-of-pocket insulin costs for Medicare beneficiaries, Poe points out that more than 70% of adults nationwide who reported rationing insulin don't qualify.

It's estimated one in five adults younger than 65 limit their use of the medication because of cost.

"The high cost of the actual drug combined with the high cost of supplies has really made this crisis something that definitely kills people," said Poe. "People have lost their lives over this crisis."

But she added that for those with prescriptions who can afford it, they do have access to an emergency supply if they can't get to a doctor in time to refill.

In 2022, Gov. Mike DeWine signed a bill into law that allows patients to receive up to three emergency refills of life-saving medication within a year without a prescription.

Failing to dispense the drug could result in harm to their health.

This story was produced in association with Media in the Public Interest and funded in part by the George Gund Foundation.




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