Emergency Preparedness Tips for Parents of Children with Special Healthcare Needs

A young girl wearing sunglasses on the beach.

April is National Autism Awareness Month. It is also a time of year when people must prepare for severe weather.

April, May, and June are peak months for tornadoes in many states. And the Atlantic hurricane season officially starts on June 1.

Emergencies come in all sizes and affect people in different ways. All emergencies require some amount of personal health preparedness beforehand to stay safe and healthy during and afterward. At a minimum that means stocking up on emergency supplies, such as food, water, prescriptions, and backup power sources.

For Jennifer Silliman and her family, it means that and more. Her 11-year-old daughter, Allyson, has autism. They live in South Florida, where they’ve experienced over a dozen hurricanes and tropical storms since moving there in 2003.

Preparing for emergencies can be challenging for families caring for a child with autism or other disability. But a little preparation now can make a big difference when an emergency happens.

Planning is paramount

All children have unique needs during an emergency. Preparedness planning for children with special healthcare needs is often more complicated because they may have:

  • A hard time moving from one place to another,
  • Urgent or constant medical needs,
  • Difficulty communicating, and
  • Trouble with transitioning to different situations.

A disaster can present some or all these difficulties at once.

Having a plan for how to stay healthy, informed, connected, and calm is important. If there is a child with special healthcare needs in your family, your emergency action plan should include an emergency care plan.

An emergency care plan is important paperwork that you and your child’s doctor can write together. It’s used to communicate information about your child to caregivers. During an emergency, this could include teachers, grandparents, friends, and neighbors.

“My biggest fear is that Allyson would get separated from me and my husband during an emergency,” says Jennifer. “Allyson is nonverbal, so she cannot tell people where she lives, what her phone number is, or how to contact her parents.”

Because of her communication challenges, Allyson wears a bracelet that has her full name and her parents’ names and contact information. “She wears it all the time. She never takes it off,” says Jennifer.

Nothing worthwhile is easy

When there is a hurricane in the forecast, Jennifer’s family makes sure they have the basics, such as water, batteries, and flashlights. But they must also prepare for Allyson’s personal needs.

Personal needs include the everyday items that she could not do without in an emergency. Allyson’s needs include a weighted blanket and a white noise machine to help her sleep and several favorite foods.

“My daughter has six foods that she eats every day, including honeydew melon and French toast sticks. Almost every food she eats must be refrigerated or cooked in a microwave and this can present challenges if the power goes out during a hurricane,” says Jennifer.

Some of Allyson’s other must-haves are noise-canceling headphones and a tablet preloaded with her favorite television shows and music. Then there’s the backup battery power that’s needed to run these things. All would be invaluable if her family ever had to evacuate to a shelter.

Strive for peace of mind

Preparing for an emergency can be stressful for all families, especially those with children with special healthcare needs. Having—and practicing—an emergency action plan can help families respond with confidence to the real thing.

Communication is key. It’s important for all families to talk to their children about what is happening in a way that they can understand. Keep it simple and consider the child’s age and type of disability.

Even though Jennifer’s daughter, Allyson, does not have a lot of expressive language, she does understand when others talk to her. “We want to be respectful of Allyson, so we tell her ‘Hey, we might need to pack up and go,’ or ‘It might get really loud tonight, and the house might get dark.’ I think telling children what’s going on puts them at ease.”

After a disaster, parents, caregivers, and healthcare providers must know how to help children cope with their different and strong emotions. Some children react right away; others may show signs of difficulty much later. Coping with a disaster can be particularly difficult for children with disabilities.

Visit the Prepare Your Health website for more information on how to prepare for emergencies.

Resources

Thanks in advance for your questions and comments on this Public Health Matters post. Please note that the CDC does not give personal medical advice. If you are concerned you have a disease or condition, talk to your doctor.

Have a question for CDC? CDC-INFO (http://www.cdc.gov/cdc-info/index.html) offers live agents by phone and email to help you find the latest, reliable, and science-based health information on more than 750 health topics.

How has COVID-19 created challenges for pediatric lead testing?

Dried blood spots used for lead testing

by Ariana La Grenade-Finch, intern, Environmental Health, APHL

COVID-19 has remained top news for several months and has altered lives in many ways. One of the ways things have changed is in how and the frequency in which laboratories conduct pediatric lead testing, something that, even during a pandemic, remains essential as part of regular pediatric checkups. To further understand COVID-19’s impact on pediatric lead testing, I decided to speak with APHL members from environmental health laboratories.

From a flood to a trickle
At the Michigan Department of Health and Human Services-Bureau of Laboratories, sample collection has been difficult because many pediatric facilities closed for in-person appointments and patients were seen remotely. Samples weren’t being provided as usual. The North Carolina State Laboratory of Public Health had a decreased number of specimens submitted during the months following initial stay-at-home orders, but has seen an increase in sample submission from 2,330 specimens in April to 3,515 specimens in May. Despite the difficulties that decreased collections suggest, both of these labs are still receiving some samples and proceeding with lead testing as much as possible.

One laboratory that has been more heavily impacted by decreased testing and hasn’t seen much of an increase in recent months is the Louisville Metro Department of Public Health and Wellness Laboratory in Kentucky. Scientists there have seen a significant decrease in blood lead testing since the pandemic began, dropping from an average of testing five days per week to three days per week due to a lack of sample volume. In April of this year the laboratory received only 126 samples, down from 400 last year.

Because of the decrease in samples and because of increased need for support, many environmental health staff have been repositioned to work on COVID-19 instead of their usual duties. For example, in the Rhode Island State Health Laboratory, which typically performs the state’s largest volume of blood lead testing, there have been days where they received no samples due to the pandemic. Those scientists were moved to support COVID-19 testing leaving fewer hands available for the lead testing work that was needed.

Long-term impact
Decreases in testing point to potential long-term ramifications for children. For some jurisdictions, as pandemic-related restrictions are lifted and pediatrician offices are re-opened, there will be an increase in the number of children being tested. In other areas, such as Louisville, there was already pre-pandemic concern about not screening enough of the high-risk children in the community. This sentiment has only intensified during the course of the pandemic although taking action remains challenging. Louisville had plans to increase screening of pregnant mothers late last year, but the project lost momentum when the pandemic struck and has not changed in recent months despite re-openings.

The lack of screening in certain high-risk populations raises concerns related to delayed diagnoses, implementation steps and interventions concerning children’s health. Discussions with a handful of laboratories have given me a preliminary understanding of how COVID-19 is affecting pediatric lead testing in environmental health laboratories across the nation, but there is variation and there will be more to explore as the pandemic continues.

Read more about the interest in pediatric lead testing.

Ariana La Grenade-Finch is currently a Program Analyst with the Office of Research and Development, Environmental Protection Agency.

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New Lab Matters: Biosurveillance and the opioid epidemic

Lab Matters Spring 2020, Issue 2

The opioid crisis remains a public health emergency in the United States, with more than 67,000 drug overdose deaths in 2018. Forensic and crime laboratories provide data on fatal opioid overdoses, but a sole focus on fatalities omits valuable data that could be used to protect communities. In this issue’s feature article, we discuss how public health laboratories can play a vital role in battling this crisis by contributing their analytical capabilities and knowledge of public health surveillance systems.

Here are a few of this issue’s highlights:

Read the full issue.

Subscribe and get Lab Matters delivered to your inbox, or read Lab Matters on your mobile device.

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Beyond COVID-19: How public health laboratories keep us safe every day

people in a group wearing masks

by Jody DeVoll, advisor, Communications, APHL

Public health laboratories have figured so prominently in media coverage of coronavirus (COVID-19) testing that one might assume that this was their sole function. In fact, they protect our health and safety through a multiplicity of programs and services that touch us at all stages of our lives. The examples below represent a mere fraction of public health laboratories’ wide-ranging activities on our behalf.

Infectious Diseases

In the spring of 2020, public health laboratories’ communicable disease divisions are operating at full steam. In addition to testing for the coronavirus, they are conducting testing and surveillance for diseases ranging from HIV, hepatitis and TB, to rabies and vaccine-preventable diseases such as measles and mumps. They also are monitoring influenza viruses to aid in selection of strains to be included in next year’s flu vaccine. As the weather warms, they will begin testing and surveillance for West Nile Virus and other mosquito-borne diseases.

Environmental Health

Environmental health divisions are balancing routine functions, such as oversight of drinking water quality, with readiness for emergencies. Any day could bring a chemical spill on the Interstate, PFAS contamination of a playground, flooding that leads to drinking water contamination or a toxic algae bloom.

A select group of laboratories, members of the National Biomonitoring Network, test human fluids for potentially harmful chemicals and their metabolites. This test data, when correlated with environmental studies, can help to pinpoint the location of health threats and assess the need for remedial action. In addition, many public health laboratories are involved in testing the quality of cannabis products, analyzing opioids common to their region and identifying the contents of locally available e-cigarette and vaping products.

Newborn Screening

Since babies continue to be born even during a pandemic, newborn screening divisions are screening newborns for heritable conditions not visible at birth. These conditions often require immediate treatment to prevent a lifetime of disabilities or death. Public health laboratories are responsible for screening of 97% of the more than four million newborns born in the US each year.

Food Safety

Food Safety teams continue to sleuth for pathogens causing outbreaks of foodborne disease. As members of PulseNet, the national laboratory network for foodborne disease surveillance, they identify the genetic signature of pathogens implicated in cases of foodborne disease. They compare these signatures with those from other cases and share the data with epidemiologists to identify and stop outbreaks before they spread. Food safety teams may also test foods suspected to have caused an outbreak and search for harmful contaminants and adulterants in human and animal food.

Public Health Preparedness and Response

Emergency Response teams are supporting the COVID-19 response while detecting and responding to other biological, chemical and radiological threats and natural disasters. Because public health laboratories form the backbone of the Laboratory Response Network (LRN), emergency response teams are veterans of the 2009 H1N1 Influenza outbreak, Severe Acute Respiratory Syndrome-related Coronavirus (SARS), Middle East Respiratory Syndrome (MERS), Ebola, Zika and other events. A team from the Texas Department of State Health Services Public Health Laboratory was the first to detect Ebola in the US.

Global Health

In addition, selected public health laboratory staff are assisting stakeholders from other countries to develop national laboratory systems, laboratory infrastructure and trained laboratory personnel. Their contributions include strategic planning, design of informatics systems, managerial and technical training, mentoring and other technical assistance.

The post Beyond COVID-19: How public health laboratories keep us safe every day appeared first on APHL Lab Blog.

New Lab Matters now available: Unsustainable

According to data published by the advocacy group Trust for America’s Health, there is a $4.5 billion gap between current funding levels and what is needed to achieve “an adequate level of public health protection” nationwide. Even though budget news for FY2020 is better than it has been, it continues a worrying, long-term trend of public health underfunding and public health laboratories being forced to draw on short-term crisis funding to maintain day-to-day activities. In this issue’s feature article, we examine the challenges that public health laboratories face, especially during the COVID-19 response.

Here are a few of this issue’s highlights:

Read the full issue.

Subscribe and get Lab Matters delivered to your inbox, or read Lab Matters on your mobile device.

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APHL EVALI response spurred by strong communication

Person vaping

Whether it be a disease outbreak, a natural disaster or a devastating lung condition, regular, responsive communication drives response to public health emergencies. In the summer of 2019, with cases of E-cigarette, or Vaping, Product Use-Associated Lung Injury (EVALI) steadily rising, partners at federal, state and local health agencies, health associations, hospitals, poison control centers and other players were in constant contact.

APHL Director of Environmental Health Julianne Nassif recalls, “At the height of the EVALI response, I spent most of my day on conference calls with [the US Centers for Disease Control and Prevention (CDC), US Food and Drug Association, Council of State and Territorial Epidemiologists] and member labs. It was many long hours fortified by a lot of caffeine, but these calls kept us up-to-date and on-task in a rapidly evolving situation.”

EVALI Community Links Members, Partners

APHL facilitated the exchange of time-sensitive information by creating an EVALI community of practice, linking member laboratories, federal agencies and others working on the issue. Building upon relationships developed through various laboratory networks, the group held conference calls to brainstorm ideas and discuss surveillance reports, testing methodology and legal considerations. Experts in testing for e-liquids in vaporized products joined the calls to explain methods unfamiliar to many public health laboratories. The community also served as a nexus for rapid distribution of sampling guidance and analytical methods to scientists working on analysis of EVALI case-related specimens and products. For example, CDC deployed standards for collection of bronchial lavage specimens through the EVALI community. The community continues to hold routine conference calls to exchange notes on recent findings.

APHL also polled member laboratories to solicit their advice on resources and services needed for EVALI response. They returned six recommendations:

  1. Elevation of the EVALI response to an agency-wide level
  2. Addition of experts in environmental and occupational medicine and in epidemiology
  3. Guidance for specimen collection and storage
  4. A template for submitting data to CDC
  5. Extending the time allotted for collection of samples
  6. Building non-targeted testing capability for 1000s of chemicals and providing technical support to assist states with chemical analysis

When APHL forwarded these recommendations to CDC’s Emergency Operations Center, the response was prompt: CDC would provide almost all that APHL had requested.

Existing Relationships Facilitate Response

So why did APHL laboratories and partners communicate so well during the peak of the EVALI outbreak? In short, because they knew each other. By participating in the Laboratory Response Network for Chemical Threats (LRN-C), the National Biomonitoring Network, Opioid Biosurveillance and the APHL Community of Practice for Cannabis Testing, they knew each other personally and trusted one another. Through these same networks, they had also built relationships with hospital staff, poison control specialists, epidemiologists and forensics scientists. In an emergency, these connections proved invaluable.

Learn More

A plenary session about how strong communications enhanced the laboratory response to the EVALI outbreak had been planned for the APHL 2020 Annual Conference, which unfortunately has been canceled due to the COVID-19 pandemic. There are plans underway to turn the session into a webinar, so keep an eye out on the APHL Webinars page for more information.

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Lab Culture Ep. 21: 2019 Year in Review

Collage of photos depicting APHL's 2019 year in review

Are we already at the end of 2019?! While to many of us it felt like the year flew by, APHL staff, members and partners accomplished a LOT in an effort to protect the public’s health. In this episode, Scott Becker, APHL’s executive director, reviews some of the highlights of the year along with Gynene Sullivan, APHL’s manager of communications, who is finalizing our Annual Report.

Follow APHL on TwitterFacebook and Instagram so you don’t miss anything!

Links:

APHL: Lung Injury Response Associated with Vaping

CDC: Outbreak of Lung Injury Associated with the Use of E-Cigarette, or Vaping, Products

APHL work on opioids

Data: Elemental to Health advocacy campaign

Supporting rapid exchange of public health data is urgent, crucial and laden with challenges

APHL AIMS Platform

Lab Matters (Fall 2019): Making Data Fly

NewSTEPs Data Repository

APHL Newborn Screening Systems Quality Improvement Projects Award Recipients Announced

APHL Public Health Laboratory Fellowships

APHL Emerging Leader Program

Lab Culture Ep. 9: What is the APHL Emerging Leader Program?

CDC: US Measles Cases and Outbreaks in 2019

“Launching Whole Genome Sequencing in the Public Health Realm” Lab Matters (Fall 2013)

Accreditation for Human and Animal Food Labs

APHL Conferences

Lab Culture Extra: Progress in Sierra Leone

APHL Global Health Program: Countries we serve

Global Laboratory Leadership Programme (GLLP)

Laboratory Response Network (LRN)

Lab Culture Ep. 20: 20 Years of the Laboratory Response Network

“Two Decades of Preparedness Excellence: The Laboratory Response Network” Lab Matters (Fall 2019)

The LRN’s job is to prepare, detect and respond. But what exactly does that mean?

Strengthening Lab Biosafety & Biosecurity

“Ensuring Readiness for Rabies in Puerto Rico” Lab Matters (Spring 2019)

“Public Health System Recovery in Full Swing: Hurricane Response in Puerto Rico and the US Virgin Islands” Lab Matters (Spring 2019)

In Puerto Rico, a new molecular bacteriology lab allows better control of foodborne outbreaks

APHL Publications

“US officials identify ‘strong culprit’ in vaping illnesses” Associated Press (video interview)

The post Lab Culture Ep. 21: 2019 Year in Review appeared first on APHL Lab Blog.

CDC findings mark a breakthrough in investigation of lung injury associated with vaping

Man vaping

Statement from Scott J. Becker, executive director, Association of Public Health Laboratories

Silver Spring, MD, November 8, 2019 — “Test results announced today by the Centers for Disease Control and Prevention mark a breakthrough in the ongoing investigation of lung injury associated with e-cigarette use or vaping.

“Laboratory scientists testing samples of lung fluid from 29 patients found vitamin E acetate present in all samples. These results provide direct evidence of this toxin at the primary site of injury within the lungs. They also complement tests conducted by the Food and Drug Administration and state public health laboratories that identified vitamin E acetate in e-cigarette or vaping products.

“While this is a big step in helping us understand what may be causing these injuries, these findings do not rule out the potential for other compounds or ingredients as contributing factors. There may be more than one cause of the outbreak.

“APHL applauds state public health laboratories, CDC, FDA and partners including the Council of State and Territorial Epidemiologists for their extraordinary collaboration and tireless and innovative work.

“This has been a complex investigation, and the work continues. But good science takes time, and public health laboratory work is critical to helping solve this important health challenge and stopping the outbreak.”

# # #

More APHL’s support of the EVALI response

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CDC findings mark a breakthrough in investigation of lung injury associated with vaping

Man vaping

Statement from Scott J. Becker, executive director, Association of Public Health Laboratories

Silver Spring, MD, November 8, 2019 — “Test results announced today by the Centers for Disease Control and Prevention mark a breakthrough in the ongoing investigation of lung injury associated with e-cigarette use or vaping.

“Laboratory scientists testing samples of lung fluid from 29 patients found vitamin E acetate present in all samples. These results provide direct evidence of this toxin at the primary site of injury within the lungs. They also complement tests conducted by the Food and Drug Administration and state public health laboratories that identified vitamin E acetate in e-cigarette or vaping products.

“While this is a big step in helping us understand what may be causing these injuries, these findings do not rule out the potential for other compounds or ingredients as contributing factors. There may be more than one cause of the outbreak.

“APHL applauds state public health laboratories, CDC, FDA and partners including the Council of State and Territorial Epidemiologists for their extraordinary collaboration and tireless and innovative work.

“This has been a complex investigation, and the work continues. But good science takes time, and public health laboratory work is critical to helping solve this important health challenge and stopping the outbreak.”

# # #

More APHL’s support of the EVALI response

The post CDC findings mark a breakthrough in investigation of lung injury associated with vaping appeared first on APHL Lab Blog.

Lab Culture Ep. 20: 20 Years of the Laboratory Response Network

Stefan Saravia and Maureen Sullivan at the Minnesota Public Health Laboratory

This year marks 20 years since the inception of the Laboratory Response Network (LRN). Founded by APHL, CDC and the FBI, the LRN exists to protect the public from biological and chemical threats. How did the LRN get its start? And how has it evolved over the past 20 years? This episode of Lab Culture features an interview with two public health laboratory scientists and LRN experts.

Listen here or wherever you get your podcasts:

Maureen “Moe” Sullivan
Emergency Preparedness and Response Laboratory Supervisor
Public Health Laboratory, Minnesota Department of Health

Stefan Saravia
Biomonitoring and Emerging Contaminants Unit Supervisor
Public Health Laboratory, Minnesota Department of Health

Links:

Minnesota Laboratory Emergency Preparedness
About the Laboratory Response Network (APHL.org)
The Laboratory Response Network Partners in Preparedness (CDC.gov)
What is biomonitoring? (Video)
“Pine County man charged with government center threats, more” (StarTribune)

 

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