Learning to Advocate for All Children

As parents and caregivers, learning to effectively advocate for their children can be a difficult learning curve.  But once this is achieved, family leaders can reach out beyond their own family and advocate on behalf of many children who have special health care needs. While it may be daunting to step into that larger world, family voices are one of the most powerful forces for change in our society. Here are some tools and organizations that can help you step up your advocacy game.

Washington Family Engagement has a Parent Leadership Training Institute which is a free, 12-week online course that teaches parents and those who care for children to understand systems and develop community, school engagement, and public speaking skills. As a graduation requirement, parents develop a project that benefits their schools and communities. The course offers five free elective college credits for those who graduate. The Parent Leadership Training Institute Spring Course will be available in English and Spanish, and will start on February 25th.

Several organizations teach workshops and classes entitled “Telling Your Story with a Purpose.” These workshops are intended to help you refine your thoughts and personal stories to effectively communicate your needs and the needs of your community to legislators and other officials. PAVE, DadsMOVE, and various Parent to Parent groups present these regularly, and upcoming events of this nature can be viewed on the Family to Family calendar.

Getting involved with one of the many family-led organizations that focus on children and youth with special health care needs (CYSHCN), as a volunteer, committee member, or board member can take your advocacy to a whole new level. Here are four statewide CYSHCN that you can be a part of:

Dads M.O.V.E.  is a father-led organization for families who have children and youth with behavioral health issues.

PAVE supports children and youth with special needs, with an emphasis on those with intellectual and developmental disabilities.

Washington State Community Connectors centers on behavioral health challenges of children and youth, focusing on community-based solutions.

Washington State Parent to Parent (P2P) has county level offices, where parents of children youth with special health care needs can aid one another and advocate for children with special needs.

FDA Experts Are Still Puzzled Over Who Should Get Which Covid Shots and When

At a meeting to simplify the nation’s covid vaccination policy, the FDA’s panel of experts could agree on only one thing: Information is woefully lacking about how often different groups of Americans need to be vaccinated. That data gap has contributed to widespread skepticism, undervaccination, and ultimately unnecessary deaths from covid-19.

The committee voted unanimously Thursday to support the FDA’s proposal for all vaccine-makers to adopt the same strain of the virus when making changes in their vaccines, and suggested they might meet in May or June to select a strain for the vaccines that would be rolled out this fall.

However, the panel members disagreed with the FDA’s proposal that everyone get at least one shot a year, saying more information was needed to make such a declaration. Several panelists noted that in recent studies, only about a third of people hospitalized with a positive covid test actually were there because of covid illness. That’s because everyone entering a hospital is tested for covid, so deaths of patients with incidental infections are counted as covid deaths even when it isn’t the cause.

The experts questioned the rationale for annual shots for everyone, given that current vaccines do not seem to protect against infection for more than a few months. Yet even a single booster seems to prevent death and hospitalization in most people, except for the very old and people with certain medical conditions.

“We need the CDC to tell us exactly who is getting hospitalized and dying of this virus — the ages, vulnerability, the type of immune compromise, and whether they were treated with antivirals. And we need immunological data to indicate who’s at risk,” said Dr. Paul Offit, director of the Vaccine Education Center and a pediatrician at Children’s Hospital of Philadelphia. “Only then can we decide who gets vaccinated with what and when.”

Offit and others have expressed frustration over the lack of clear government messaging on what the public can expect from covid vaccines. While regular boosters might be important for keeping the elderly and medically frail out of the hospital, he said, the annual boosters suggested by the FDA and the drug companies may not be necessary for everyone.

Read the full article from KHN.

Emergency Need for Blood Donations 

The Washington State Department of Health (DOH) and the Northwest Blood Coalition urge eligible blood donors to donate during National Blood Donor Month. The coalition serving Washington state includes: VitalantCascade Regional Blood CentersBloodworksNW, and the American Red Cross Northwest Region.

Donating blood is safe for donators and lifesaving for recipients. Donations are critical for patients undergoing surgeries, cancer treatments, blood disorder treatments, childbirth complications, and other serious and potentially life-threatening conditions and injuries. Most people in good health, at least 18 years old and weighing 110 pounds, can donate blood. People aged 16 and 17 may donate in Washington with signed permission forms.  

“Every two seconds, someone in the United States needs blood,” said Angel Montes, Donor Services Executive, Red Cross Northwest Region. “You can help patients in need by making a blood or platelet donation today.”  

The need for blood donations across the state is at a critical level which is anticipated to continue until donations increase. There is a specific need for younger volunteers willing to commit to multiple donations a year. Those who have regularly donated can encourage younger loved ones to join in the lifesaving commitment.    

“New blood donors are needed every day to replace those who can no longer donate,” said Jennifer Hawkins, Regional Director for Vitalant Northwest. “However, blood centers are seeing fewer people step forward to roll up their sleeves. This is a perfect time to donate and continue donating three times a year. If everyone did this, we would no longer have emergency blood shortages across the Pacific Northwest.”  

According to Curt Bailey, President and CEO at BloodworksNW, “The blood used in emergency situations is usually collected a week to ten days in advance. A community has to be ready for the next crisis situation. Consistent blood donations ensure a safe and reliable blood supply for our community and patients.”  

The President and CEO at Cascade Regional Blood Services, Christine Swinehart said, “Blood donations drop off every year during the holidays, yet the need remains high, creating emergency shortages like we are experiencing today. Kick off the new year by giving in the most meaningful way with your generous blood or platelet donation. Please make an appointment today at your community blood center and give the gift of life.” 

Donation Opportunities: 

·         RedCrossBlood.org 

·         BloodworksNW.org 

·         Vitalant.org/donate 

·         CRBS.net/donate 

The Case of the Two Grace Elliotts: A Medical Billing Mystery

Earlier this year, Grace Elizabeth Elliott got a mysterious hospital bill for medical care she had never received.

She soon discovered how far a clerical error can reach — even across a continent — and how frustrating it can be to fix.

During a college break in 2013, Elliott, then 22, began to feel faint and feverish while visiting her parents in Venice, Florida, about an hour south of Tampa. Her mother, a nurse, drove her to a facility that locals knew simply as Venice Hospital.

In the emergency department, Elliott was diagnosed with a kidney infection and held overnight before being discharged with a prescription for antibiotics, a common treatment for the illness.

“My hospital bill was about $100, which I remember because that was a lot of money for me as an undergrad,” said Elliott, now 31.

She recovered and eventually moved to California to teach preschool. Venice Regional Medical Center was bought by Community Health Systems, based in Franklin, Tennessee, in 2014 and eventually renamed ShorePoint Health Venice.

The kidney infection and overnight stay in the ER would have been little more than a memory for Elliott.

Then another bill came.

Read the full article from KHN.

About 5 Million Uninsured People Could Get ACA Marketplace Coverage Without a Monthly Premium – But They Would Have to Enroll Soon

About 5 million uninsured people across the country could get coverage through an Affordable Care Act Marketplace health plan with virtually no monthly premium if they enroll soon, a new KFF analysis finds.

In most states, open enrollment runs through January 15, with tax credits available to help eligible low- and middle-income people afford coverage. Those tax credits would offset the full monthly premium for the lowest cost plan or plans for millions of uninsured residents, the analysis finds.

Free or nearly-free premium silver plans with very low deductibles are available to all Marketplace subsidy-eligible enrollees with incomes up to 150% of poverty ($20,385 for individuals or $41,625 for families of four enrolling in 2023).  In some cases, there could be a small extra charge – usually no more than a few dollars per month – for non-essential benefits covered by the plan.

In some parts of the country, people with incomes above 150% of poverty can also get free or nearly free silver plans, with somewhat less generous cost-sharing reductions. For example, as can be seen in the interactive map, a 40-year-old making $25,000 per year (184% of poverty) could get a free or nearly free silver plan with a smaller cost-sharing reduction in about 8% of counties, excluding counties where individuals are eligible for Medicaid or Basic Health Program (BHP) plans. Less generous bronze plans with higher deductibles are often available without a premium at even higher incomes.

KFF has an online calculator that estimates the tax credits and premiums available to individuals and families based on their age, income, and location, and maintains more than 300 frequently asked questions about open enrollment, the health insurance marketplaces and the ACA.

Flu cases very high in Washington: DOH urges everyone take precautions

The Washington State Department of Health (DOH) is informing Washingtonians that the flu is spreading at a high rate in Washington state right now. The current flu season is early this year and flu deaths are at higher rates than usually seen at this point in the year. As of December 10, 40 people have died from the flu in Washington including three children.

DOH strongly recommends everyone aged 6 months and older get the flu vaccine as soon as possible. It can help keep individuals from getting severe illness or spreading the disease and prevent hospitalizations in an already strained healthcare system. If someone does get the flu when they are vaccinated, it’s typically milder with fewer complications. The vaccine also lowers the risk of needing medical care.

“It’s not too late to get your flu shot, so we urge everyone aged 6 months and older to get vaccinated as soon as possible,” said Umair A. Shah, MD, Secretary of Health. “Flu is spreading rapidly through our state and getting your flu shot now helps to protect us all, especially as we plan to gather for holidays and events.”

The most common strain of flu seen so far this year is influenza A (H3N2). This strain typically causes more severe disease. All available flu vaccines provide protection against H3N2.

Remember that the flu can be serious and deadly, even for young and otherwise healthy adults. Flu can be especially dangerous to people who are under five years old, aged 65 or older, pregnant, immunocompromised, or have chronic health conditions.

The flu vaccine is available at most pharmacies, healthcare provider offices, and clinics. The flu vaccine can be received at the same time as any other vaccine.

In addition to the flu, other respiratory illnesses such as COVID-19 and RSV are making both children and adults sick and overloading our hospitals. Individuals can help keep themselves, their family, and their community healthy by getting a flu vaccine and COVID-19 booster and taking other measures to prevent getting sick or spreading illness to others. DOH recommends:

  • Get up to date on any vaccines that are due. This includes the yearly flu vaccine and any COVID-19 boosters for those 6 months and older. Vaccination is your best defense against many serious diseases.
  • Wash your hands frequently with soap and water. Use hand sanitizer when soap is not available, and hands are not visibly soiled.
  • Consider wearing a mask in crowded or indoor settings.
  • Sneeze or cough into the crook of your arm or a tissue so you don’t put germs on your hands or in the air.
  • Avoid close contact with people who are sick.
  • If you feel sick, stay home.

Find out more at KnockOutFlu.org.

Inside a Children’s Hospital: Struggling to Cope With a Surge of Respiratory Illness

Waiting for their turn in the emergency room, dazed-looking parents in winter coats bounced crying children in their arms, trying to catch the eye of Dr. Erica Michiels. Us! Pick us next! they seemed to plead with tired eyes.

Michiels directs pediatric emergency medicine at Corewell Health Helen DeVos Children’s Hospital in Grand Rapids, Michigan. Lips pressed together in a thin line, she surveyed what she calls the “disaster” area.

“People have been out here waiting for a couple hours, which is heartbreaking,” she said.

Typically, the ER at DeVos Children’s sees about 140 kids each day, according to Michiels, but on a recent Tuesday in early December, they saw 253.

“I hate when we have a wait,” sighed Michiels. “But for right now, we can’t do it any other way.”

Like many other children’s hospitals across the nation, the capacity of the staff at DeVos Children’s has been stretched by waves of patients with RSV and, increasingly, the flu.

This surge of sick kids is coming after years of some U.S. hospitals cutting back on pediatric beds — in part because it is typically more profitable to treat adult patients. The remaining pediatric beds are increasingly concentrated in urban areas, leaving families in rural areas to travel longer distances to get care for their children.

When Staci Rodriguez brought her 9-month-old son into the ER in their hometown of Shelby Township, Michigan, she was desperate. Santiago Botello Rodriguez, who has big brown eyes and long eyelashes that everybody gushes over, had been sick for days. First Santi stopped eating, so she took him to urgent care, she said. Then he started sleeping 20 hours a day, so Rodriguez went to the pediatrician. She said she was sent home, after being told Santi was just fighting a virus.

Read the full article from KHN.

Study Needs Participants: The Health of Parents of Children Diagnosed with Autism

Rutgers University is conducting a study on the health of parents of children diagnosed with autism.  The purpose of this study is to explore how levels of stress and self-compassion influence parental mental and physical health. They are planning to recruit 280 participants in this survey.

Who is eligible to participate?

Adult parents or primary caregivers of a child diagnosed with autism spectrum disorder
Ability to read and respond to survey questions in English

Participants will be asked to complete a 15-20 minute, online survey about their health. Responses will be confidential. This study will inform the development of interventions to improve the mental and physical
health of parents and caregivers of children diagnosed with autism.

Omicron-targeted COVID-19 boosters now authorized for children ages 6 months and older

OLYMPIA  – The Washington State Department of Health (DOH) and other healthcare providers will soon begin offering omicron variant-targeted bivalent booster doses of COVID-19 vaccines to children ages 6 months and older. This follows guidance and recommendations from the U.S. Food and Drug Administration (FDA) and the Centers for Disease Control and Prevention (CDC).

  • Children 6 months through 5 years of age who received the original (monovalent) two-dose Moderna COVID-19 vaccine series are now eligible to receive a booster of the updated (bivalent) Moderna COVID-19 vaccine two months after their last dose.
  • Children 6 months through 4 years of age who have not started or completed their three-dose Pfizer-BioNTech COVID-19 vaccine series will now receive the updated (bivalent) Pfizer-BioNTech COVID-19 vaccine as the third dose following two doses of the original (monovalent) Pfizer-BioNTech COVID-19 vaccine.
  • Children 6 months through 4 years of age who have already completed their three-dose primary series with the original (monovalent) Pfizer-BioNTech COVID-19 vaccine are not eligible for an updated (bivalent) booster dose at this time.

DOH urges all parents and guardians of children ages 6 months and older to prioritize vaccinating their children with the updated booster if eligible, or starting the COVID-19 vaccine primary series if they are yet to begin. Washington state is currently seeing record pediatric hospitalizations from respiratory viruses and vaccines add an extra level of protection from severe illness. Additionally, flu vaccines are available to everyone 6 months and older at provider offices and pharmacies across the state. Flu and COVID-19 vaccines can be safely given at the same time.

“This is great news that infants and young children can now get the updated bivalent booster, which offers better protection against Omicron subvariants,” said Tao Sheng Kwan-Gett, MD, MPH, Chief Science Officer. “We encourage everyone 6 months and older to get up to date on your COVID-19 vaccines and boosters as well as the seasonal flu shot in order to keep yourself and those around you safe, and to reduce the pressure on our severely stressed hospital system.”

Pediatric-focused COVID-19 boosters are expected to start arriving in provider offices the week of December 12. To make a vaccine or booster appointment, visit VaccinateWA.org, or call the COVID-19 Information Hotline at 833-VAX-HELP. Language assistance is available. If you have questions, visit DOH’s COVID-19 Vaccine Frequently Asked Questions webpage or talk to a trusted healthcare provider.