Banner image with a boy with his mother both are wearing face mask

January 9th, 2020, the World Health Organization announced a pneumonia-like illness in Wuhan, China.  By January 21st, the first U.S. case of COVID-19 was confirmed in Washington state.  The spread of COVID-19 around the world and through the U.S. has dominated headlines and been documented by countless sources.  Our country’s response has been riddled with mixed messaging and opportunist politics.

Bottom line:  Families, COVID-19 is in every Montana county and cases grow by the day. Despite a low mortality rate, our children with diagnoses do have increased risk of contracting COVID-19 and of experiencing complications.

Your family member with a diagnosis may be at higher risk of getting COVID-19, or experiencing more severe illness than most.  Risk factors may be physical, like an underlying medical condition (diabetes, obesity, lung disease, heart condition, cancer, compromised immunity).

Other risk factors for a family member with a disability/diagnosis may be behavioral, social-emotional, or environmental in nature, like being unable to tolerate wearing a mask or understand the need to minimize touching and increase physical distance, poor handwashing hygiene, and unavoidable proximity to multiple people providing personal care.

Behaviors that reduce risk of COVID-19:

clipart for a woman face wearing mask

clipart of two people practicing the Social physical distancing

clipart for hand washing

Wearing a mask Social (physical) distancing of six feet between you and anyone who doesn’t share your home Excellent handwashing hygiene

clipart for a woman touching her face

clipart of disinfecting touched surfaces

Clipart of group of people

Doing your best not to touch your face (eyes, mouth, nose) Cleaning and disinfecting frequently touched surfaces Trying to avoid any crowded situations

 

If someone in your house gets COVID-19, designate a bedroom (and preferably a bathroom) for the sick person’s use only. If tolerated, both the sick person and the caregiver in contact should wear masks. This video provides some simple tips for disinfecting your home when you’re caregiving for someone with COVID-19.

 

Symptoms of COVID-19:

Generally appear 2-14 days after exposure. People with these symptoms may have COVID-19:

Fever or chills, cough, shortness of breath or difficulty breathing, fatigue, muscle or body aches, headache, new loss of taste or smell, sore throat, congestion or runny nose, nausea or vomiting, and diarrhea.

Two items you should consider purchasing to monitor for COVID-19:

Thermometer – Schools and medical offices are just two examples of places requesting you take your temperature, or your child’s temperature, before entering those spaces. Choose the thermometer that is easiest for you to use; this guide provides pros and cons of different types. A person has a fever if his temperature is 100.4 or higher.

Pulse Oximeter - A pulse oximeter is a painless finger clip that reliably measures a person's blood oxygen levels.  Your oxygen level is valuable information for your healthcare provider.  Sharing your oxygen level during a phone call or telehealth appointment can help your provider determine whether you can continue to treat yourself at home or need to be seen quickly and in-person.  You can get a pulse oximeter at your local medical supply store, Walgreens, Walmart, or online.

Worries about Separation during Hospitalization (as of November 2020):

Initially, the MT F2F team was reassured by several hospital representatives that children and adults with disabilities who rely on a caregiver to communicate their needs will not be separated from that caregiver during hospitalization. However, cases have spiked and the very real risk of our hospitals being overwhelmed has increased.  In response, families and guardians are involved in care decisions but are generally not allowed in COVID units.

We encourage you to allow this anxiety-provoking reality firm your resolve to prevent your child from being exposed to COVID-19 to the very best of your ability. 

If your child is hospitalized and you suspect medical rationing, please call or write Disability Rights Montana to let them know what you are experiencing.

Flu and COVID-19:

Although a flu vaccine is generally recommended for anyone over six months of age (with some exceptions), getting our families vaccinated this year is particularly important.  Our healthcare systems are already stressed by COVID-19; you do not want your child to need medical care for flu, then encounter difficulty getting help due to lack of capacity at your area hospital. 

Flu symptoms are similar to symptoms of COVID-19. Learn more about the differences.

 

 

Resources:

Below, please find some resources for your family as you navigate the pandemic with an exceptional child.  The links are current as of October 2020. If you have found other resources that have been helpful, please write the MT F2F and suggest they be added to this page.

If you have specific questions or concerns regarding your personal situation, please call or write the MT F2F. Our team will do our best to connect you with the information and supports you need:  montanaf2f@umontana.edu, (406) 243-4570.

ADA and Face Mask Policies (Southeast ADA Center)

A Parent’s Perspective: Navigating Face Coverings (MT Family to Family Health Information Center and the Rural Institute for Inclusive Communities)

Communicating with Patients with Disabilities in the COVID-19 Response (MassGeneral for Children) 

Communication Supports for Children and Adults with Complex Communication Needs During the COVID-19 Pandemic (Rehabilitation Engineering Research Center)

COVID-19: Caring for Children and Youth with Special Health Care Needs (American Academy of Pediatrics) 

COVID-19 Communication Rights Toolkit (U.S. Version) (Communication First) 

COVID-19 Disability Resources (American Civil Liberty Union) 

COVID-19 and People with Disabilities (Centers for Disease Control and Prevention) 

COVID-19 and People with Developmental and Behavioral Disorders (Centers for Disease Control and Prevention) 

COVID-19 Print Resources (Centers for Disease Control and Prevention)  

COVID-19 Resources (Disability Rights Montana)  

COVID-19 Resources for Families and Individuals (National Autism Association) 

I Have a Disability: How Does the Mask Policy Affect Me?  (Disability Rights Montana) 

Parenting Children with Special Needs During COVID-19 (Mayo Clinic)  

Patient-Provider Communication Boards (free downloads) (Patient-Provider Communication Network) 

Resources for Helping Kids and Parents Cope Amidst COVID-19 (American Academy of Child & Adolescent Psychiatry)  

Social Stories for Young and Old on COVID-19 (Autism Resource Central)