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Tips for the Future Care of Disabled Family Members

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Tara Siegel Bernard, THE NEW YORK TIMES

(The New York Times)—Christine Salerno is like many other single working mothers with small children, but her days are often packed with even more emotional highs and lows: Her 4-year-old daughter, Lily, with soft brown eyes and a wide smile, was found to have Rett syndrome, a rare neurological disorder, last year.

Lily’s case is relatively mild, but she still has limited use of her hands, has difficulty swallowing and can verbalize few words.

Ms. Salerno has spent many late nights researching the types of services and therapies that will help Lily now, but she also needs to think hard about her care decades into the future. “She has 10 therapists and 15 doctors, and I manage all of this,” said Ms. Salerno, 41, of Brooklyn. “This is a lifetime thing. They have reversed Rett syndrome in lab mice. I can be as hopeful as I want, but I still have to prepare.”

Planning for family members with special needs can be overwhelming, particularly when so many decisions may have lifelong consequences. Beyond figuring out the intricacies of government programs, parents fret over guardianships, how governmental services may erode and what legal documents they need.

And soon there will be a new savings account to consider, known as a 529A or ABLE account, which will permit people with disabilities to keep more money in their own names without losing means-tested benefits.

Here are tips for families beginning to plan for individuals with special needs.

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Barbara Lee

Barbara Lee Applauds 2nd Round of Workforce Funding from COVID Community Care Act Legislation

Congresswoman Barbara Lee (CA-13) applauded the announcement that the U.S. Department of Health and Human Services (HHS) and the Health Resources and Services Administration (HRSA) will be awarding $121 million to 127 award recipients of the Local Community-Based Workforce to Increase COVID-19 Vaccine Access Program.

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Barbara Lee

Congresswoman Barbara Lee (CA-13) applauded the announcement that the U.S. Department of Health and Human Services (HHS) and the Health Resources and Services Administration (HRSA) will be awarding $121 million to 127 award recipients of the Local Community-Based Workforce to Increase COVID-19 Vaccine Access Program.

Announced on July 27, these awards are funded with resources from provisions within the American Rescue Plan Act that Lee led through her COVID Community Care Act.  This reflects the second of two funding opportunities announced in May 2021 for community-based efforts to hire and mobilize community outreach workers, community health workers, social support specialists, and others to increase vaccine access for the hardest-hit and highest-risk communities through high-touch, on-the-ground outreach to educate and assist individuals in getting the information they need about vaccinations.

The first round of funding, which was administered in June, included an $11 million award to the Public Health Institute in Oakland and a $9.5 million award to the Association of Asian/Pacific Community Health Organizations in Berkeley. Three Oakland based organizations, the Public Health Institute, Women Organized to Respond to Life-Threatening Diseases, and Safe Passages, are recipients of this round of funding, bringing the total funding brought to organizations in CA-13 to nearly $23 million.

“We are facing another inflection point in this pandemic. We must make meaningful investments in getting everyone vaccinated—especially communities of color and medically underserved communities,” said Lee.  “I worked hard in Congress to invest in trusted messengers at the community level to build confidence in vaccines and COVID-19 prevention efforts. This is a much-needed continuation of that work, and we’ll see over a million dollars of investment on the ground in our own East Bay community.

“Our Tri-Caucus – the Congressional Black Caucus, Congressional Hispanic Caucus, Congressional Asian Pacific American Caucus, and Native American member Congresswoman Sharice Davids, House Speaker Nancy Pelosi, Energy and Commerce Committee Chair Frank Pallone, Education and Labor Committee Chair Bobby Scott and Appropriations Committee Chair Rosa DeLauro deserve credit for their hard work and support in getting this across the finish line in the American Rescue Plan.  We can see that the work of House Democrats is making a real-life impact on the ground for communities.  This is an important step, but we must continue our work to dismantle systemic racism in our public health system and ensure that vaccines are equitably and adequately distributed.”

The purpose of this program is to establish, expand, and sustain a public health workforce to prevent, prepare for, and respond to COVID-19.  This includes mobilizing community outreach workers, which includes community health workers, patient navigators, and social support specialists to educate and assist individuals in accessing and receiving COVID-19 vaccinations.  

This includes activities such as conducting face-to-face outreach and reaching out directly to community members to educate them about the vaccine, assisting individuals in making a vaccine appointment, providing resources to find convenient vaccine locations, assisting individuals with transportation or other needs to get to a vaccination site.

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Activism

Free School Meals for All Here to Stay in California

With 1 in every 6 children facing hunger in the U.S., California is the first state to promise that every public school student — all 6 million of them – will get free school meals.

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Nancy Skinner

With 1 in every 6 children facing hunger in the U.S., California is the first state to promise that every public school student — all 6 million of them – will get free school meals.

The universal school meals program, which will launch in the 2022-2023 school year, is part of the landmark state budget agreement reached between Gov. Gavin Newsom and the Legislature last month. Days later, Maine became the second state to commit to offering a universal school meals program with the signing of its budget.

The program ensures that all students will be offered breakfast and lunch at their school, which state Sen. Nancy Skinner, D-Berkeley, said is “essential to learning.” Skinner has led the effort to establish a universal school meal program.

“We know that many California children are food insecure, and if you’re hungry you cannot learn well,” Skinner said. “The whole point of school is learning, and everything we can do to create an environment that allows children to thrive and learn is what we need to do.”

Skinner introduced a bill in March that would have established a universal school meal program. After the program garnered bipartisan support and the California Department of Finance forecast unexpectedly large projected revenues, lawmakers opted to include it in the state budget rather than as a separate bill.

The final agreement between Newsom and the Legislature calls for $650 million through the Proposition 98 fund each year to reimburse school districts starting in 2022, as well as $54 million in the 2021-22 fiscal year to supplement state meal reimbursements. Proposition 98 is the formula that determines what portion of the general fund goes to community colleges and K-12 schools.

The state program is set to begin in the 2022-23 school year because the U.S. Department of Agriculture has already committed to paying for school meals for all students through the 2021-22 school year.

The USDA has reimbursed districts for providing free meals to all students since the start of the pandemic. Before the pandemic, districts were only reimbursed for feeding students who were enrolled in the National School Lunch Program. Advocates said being able to feed students without having to check whether they qualified for free lunches allowed districts to serve more families at a time when many faced hunger and hardship.

Waiving the eligibility requirements allowed the Oakland Unified School District, for example, to distribute as many as 18,000 grab-and-go meals a day during the pandemic, said spokesman John Sasaki.

“That just goes to show the need that was there,” Sasaki said.

Previously, as part of the National School Lunch Program application process, families had to disclose their household income, how many people lived in the household, their children’s immigration status or if their children were homeless or runaways. Some families feared giving out that information, and students may have felt embarrassed to receive a free meal while others paid for it.

Schools in New York City began serving free meals to all students in 2017 after finding that some students would rather go hungry than admit they didn’t have enough money to pay for lunch. The decision followed a national outcry over “lunch shaming” — publicly shaming students for unpaid school meal bills, or even school staff throwing away their lunches rather than allowing them to eat.

Advocates believed that though 3.9 million students – 63% of California’s student body — participated in the program, the need was actually much higher.

“It’s such good news that everybody gets food with no strings attached, but to be able to do it in a way that nobody is called out is the best thing about this,” Sasaki said. “We want to make sure kids are never given a hard time for being who they are or being in the situation they are in.”

Districts will still be asking families to fill out household income eligibility forms, however. That’s because the number of families in the district that make so little that they qualify for the federal free and reduced-price lunch program remains a key factor in the state’s Local Control Funding Formula. The formula gives additional state funds to districts based on the number of low-income students, English learners, foster children and homeless youth they serve.

Tony Wold, the West Contra Costa Unified associate superintendent of business services, said the district was concerned that fewer families would fill out the household income eligibility forms because they didn’t have to in order to receive free meals. That could have potentially led to a reduction in supplemental funds for the cash-strapped district. To help solve the problem, the district had outreach workers call families directly, explaining why it was important for families to submit the information.

The outreach workers’ “big lift” resulted in more families filling out the forms than the previous year, Wold said, which kept the district’s unduplicated pupils percentage constant. That statistic measures the share of a district’s students who are low-income, homeless, foster youth or English learners — all of which drive the Local Control Funding Formula.

Outreach workers at Oakland Unified emphasize to families who are skeptical about the forms that they determine how much money goes to the classroom, Sasaki said.

California School Boards Association spokesman Troy Flint said the organization anticipates it will be harder for districts to collect income eligibility forms with the new universal meals program. The association hopes the state will provide some support to schools’ “diligent and creative efforts” to collect the forms, though the group isn’t calling for any specific change.

“This administration has prioritized steering additional money toward high-need students, particularly into concentration grants, so there’s reason to believe they might be willing to work toward a modification here,” Flint said.

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Activism

State Employees, Health Care Workers Required To Be Vaccinated Or Tested Regularly For COVID-19

State officials announced July 26 that health care workers and state employees will now be required to get vaccinated against COVID-19 or get tested regularly if they cannot verify their vaccination status.

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Cars line up to receive a Johnson & Johnson COVID-19 vaccine at the drive-through vaccination site at Six Flags Hurricane Harbor (Waterworld) in Concord on March 31, 2021. The vaccine is available to everyone 12 years or older. Photo by Ray Saint Germain/Bay City News.

State officials announced July 26 that health care workers and state employees will now be required to get vaccinated against COVID-19 or get tested regularly if they cannot verify their vaccination status.

The requirement, which officials underscored is not a pure vaccination mandate, will take effect August 2 for state employees and August 9 for a broad range of health care settings and facilities, including outpatient and long-term care facilities.
Those who choose to remain unvaccinated or cannot verify their vaccination status will be encouraged to wear a medical-grade face covering and required to test negative for the virus twice a week if they work in a hospital, or once a week if they work in an outpatient care facility like a dentist’s office.
“Too many people have chosen to live with this virus,” Gov. Gavin Newsom said during a briefing in Oakland to announce the new requirements. “We’re at a point in this pandemic where individuals’ choice not to get vaccinated is now impacting the rest of us in a profound and devastating and deadly way.”
The new requirements are part of the state’s push to get more and more people vaccinated as a wave of new cases, spurred by the ultra-contagious delta variant and cases among unvaccinated people, threatens to halt the state’s progress in mitigating the virus’ spread.
The vast majority of the state’s current cases, hospitalizations and deaths are also among unvaccinated residents, with the number of new cases per day per 100,000 residents around 14 for unvaccinated residents and just two per 100,000 for fully vaccinated people.
The delta variant also accounts for roughly 80% of the current cases that have been analyzed across the state, according to data from the California Health and Human Services Agency.
The California Medical Association endorsed the requirements for health care workers shortly after Newsom’s announcement.
“We’ve come too far to ease up now in our fight against COVID-19,” CMA President Dr. Peter Bretan Jr. Said in a statement. “It makes sense for the health care community to lead the way in requiring vaccines for our employees. We will continue to do all we can to help convince all Californians that vaccines are safe, effective and critical as we come together to bring this pandemic to an end.”
While state and local officials have shied away from outright mandating vaccinations, cracks in that wall have begun to show even as more than 70% of eligible state residents have gotten vaccinated.
Last week, health officials in San Francisco, Contra Costa and Santa Cara counties urged employers of all sizes to consider mandating that their employees get vaccinated, both to protect their co-workers as well as their customers.
On July 26,  the U.S. Department of Veterans Affairs became the first federal agency to require that its health care workers get vaccinated in the coming weeks, lest they face penalties like increased testing and potential removal.
University of California, San Francisco, Department of Medicine chair Dr. Bob Wachter noted in a Twitter post that the country appears at a tipping point for vaccination requirements.
“As each organization and industry finds the courage to mandate or strongly incentivize vaccination, it makes it that much easier for the next one to do so,” Wachter said. “Until the pressure is on leaders who have not done it.”
Newsom and California Health and Human Services Secretary Dr. Mark Ghaly noted that first-dose vaccinations increased 16% last week over the previous week, but argued that that pace must be maintained to keep the virus at bay.
Public health officials have also cautioned that while current data has found that fully vaccinated people are well protected against serious illness and death if they contract the delta variant, a future variant may find it much easier to circumvent the available vaccines.
“The fewer people that are vaccinated, the more likely we could have more variants like this delta variant,” State Sen. Nancy Skinner, D-Oakland, said at the July 26 briefing. “Right now we’re seeing that it is not very harmful to a vaccinated person, but how do we know what the next variant is going to be like?”
In recent weeks, Newsom has hinted at the relationship between online misinformation and the remaining vaccination holdouts, but offered his strongest rebuke Monday, equating not getting vaccinated to drunken driving.
“You’re putting other peoples’, innocent peoples’ lives at risk, you’re putting businesses at risk, you’re putting at risk the ability to educate our kids by getting them back in person full-time,” he said, adding that public officials need to be clearer about the societal costs of the pandemic continuing to flourish among the unvaccinated.
State officials said they expect health care settings to be fully in compliance with the new requirements by August 23, giving unvaccinated employees time to get fully vaccinated with either the one- or two-dose vaccine regimen.
Newsom, when asked whether the state will issue additional mask and vaccination mandates, said he hopes the private sector will take those steps before the virus forces the state’s hand.
Even so, the governor reiterated his frequent argument that such mandates will likely be unnecessary – as long as those who are eligible get vaccinated.

“We can extinguish this disease,” Newsom said. “You won’t be asking about mask mandates, that’s the wrong question. The question is, why haven’t we followed the science and why aren’t we finishing the job?”

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