Although the coronavirus affects everyone, children with disabilities and special healthcare needs are likely at greater risk for a variety of reasons.
CHILDREN WITH SPECIAL HEALTHCARE NEEDS AND COVID-19 RESOURCES
BY MARIA DOCHERTY AND LAUREN AGORATUS, M.A.
According to the Centers for Disease Control and Prevention (CDC), children and adults with underlying medical conditions are most at risk for complications from COVID-19.1 Following are what various organizations offer to keep families informed:
- • The CDC has information regarding at-risk populations, preventing spread, what to do if someone is sick, and even disinfecting your environment.
- • The American Academy of Pediatrics (AAP) has information regarding what families need to know, how they can protect themselves, and how to talk to their children about it.
- • The Center for Parent Information and Resources (CPIR) has a landing page and e-newsletter focused on COVID-19.
- • The RAISE National Transition TA Center has an issue of their e-newsletter specifically for youth and young adults with disabilities.
- • Family Voices has information and a newsletter specifically for parents of children with special health care needs.
- • The National Federation of Families for Children's Mental Health has information on crisis resources and hotlines for family-run organizations and families.
- • The SPAN Parent Advocacy Network, which houses the CPIR and RAISE, as well as the Parent Training and Information Center, Family-to-Family Health Information Center, Federation of Families for Children's Mental Health State Organization, and Parent-to- Parent USA affiliate for New Jersey, has, like many other family-led, family-serving organizations, a resource page for families and infographic chart.
In addition to providing information and resources for families, youth, and the professionals who serve them, family organizations and disability advocates are acting to ensure equal access to coronavirus-testing and services for children, youth, and adult with disabilities. Some disability rights advocates have filed complaints against state plans to ration health care services, including automatically placing people with disabilities in categories to receive lesser care.2
FAMILY SUPPORT
Children with disabilities and their families may be anxious during the pandemic. Understood.org has information about home learning, disability concerns, fun activities, and explaining COVID to children, all in family-friendly language. Children and families need information with tips on how to implement practical matters. The Substance Abuse and Mental Health Services Administration has tips on coping with stress, behavioral health, quarantine, and talking to children during outbreaks.
TALKING TO CHILDREN
1. cdc.gov/coronavirus/2019-ncov/specific-groups/people-at-higher-risk.html
Besides the strategies mentioned in the precious paragraph, Psychology Today has an excellent article on explaining the virus to children with developmental disabilities, found at: psychologytoday.com/us/blog/neuroscience-in-translation/202003/how-explain-global-health-crisis-children-autism.
There are also two good social stories: My Story About Pandemics and Coronavirus by Carol Gray ( carolgraysocialstories.com/wp-content/uploads 2020/03/Pandemics-and-the-Coronavirus.pdf) and What is the Coronavirus? by Amanda McGuinness ( littlepuddins.ie/coronavirus-social-story).
SPECIAL EDUCATION RIGHTS
Families may be concerned that their child's education and related services will be adversely affected during this time. In fact, the Council of Parent Attorneys and Advocates (COPAA) has issued the following Statement on Student Rights under IDEA during COVID19 ( c opaa.org/news/493349/COPAA-Statement-on-Student-Rights-Under-IDEA-During-the-COVID-19-Outbreak.htm). In addition, the U.S. Department of Education has information on preventing discrimination, civil rights of students with disabilities, a Q&A about providing services to students, and protection private health and education information. In addition to its COVID-19 page, the CPIR has a listing of Parent Centers if families feel that they need help with their child's early intervention, special education, and/or transition to adult life services.
Children and youth with disabilities and special healthcare needs have the right to a free, appropriate public education and access to healthcare. In this difficult time, parents of children with special needs will need additional resources to reduce the stress on their family, and improve educational and healthcare access and outcomes for their children.•
ABOUT THE AUTHORS:
Maria Docherty is the Director of Individual Assistance and Co-Director of the Parent Training and Information Center for SPAN. Lauren Agoratus, M.A. is the parent of a young adult with multiple disabilities. She serves as the State Coordinator for Family Voices-NJ and as the central/southern coordinator in her state's Family-to-Family Health Information Center. FVNJ and F2FHIC are both housed at the SPAN Parent Advocacy Network (SPAN) at spanadvocacy.org
STAYING HOME, STAYING SAFE : ADDITIONAL COVID-19 RESOURCES
AMERICAN ACADEMY OF PEDIATRICS healthychildren.org/English/health-issues/conditions/chest-lungs/Pages/2019-Novel-Coronavirus.aspx
CENTERS FOR DISEASE CONTROL AND PREVENTION cdc.gov/coronavirus/2019-ncov/index.html
CENTER FOR PARENT INFORMATION AND RESOURCES Resources on COVID parentcenterhub.org/coronavirus-resources Find Your Parent Center parentcenterhub.org/find-your-center
FAMILY VOICES NATIONAL Webpage/Monthly Newsletter familyvoices.org/coronavirus
SUBSTANCE ABUSE AND MENTAL HEALTH SERVICES ADMINISTRATION (SAMHSA) store.samhsa.gov
FEDERATION OF FAMILIES FOR CHILDREN'S MENTAL HEALTH Resources on COVID for families ffcmh.org/covid-19-resources-for-parents Find your FFCMH State organization or chapter ffcmh.org/our-affiliates
RAISE NATIONAL TRANSITION TA CENTER Resources for youth with disabilities myemail.constantcontact.com/RAISE-The-Standard-Newsletter---March- 2020.html?soid=1115638112245&aid=mDii4ExNoJo
SPAN PARENT ADVOCACY NETWORK COVID webpage spanadvocacy.org/home/spans-covid-19-information-page Infographic on resources docs.google.com/document/d/1DVKnI4bT-FixSOsFjkTRPcYH7sRLN5KbJ2w3fFPQtmQ/edit
U.S. DEPARTMENT OF EDUCATION ed.gov/coronavirus
UNDERSTOOD.ORG understood.org/en/school-learning/coronavirus-latest-updates
COVID-19 RESOURCES FOR FAMILIES : SPANADVOCACY.ORG/HOME/SPANS-COVID-19-INFORMATION-PAGE
NATIONAL INFORMATION
Coronavirus Resources from the Center for Parent Information and Resources CDC Recommendations Regarding the Use of Cloth Face Coverings Employee Rights: Paid Sick Leave & Expanded Family and Medical Leave Under the Families First Coronavirus Response Act
STATE COUNTY INFORMATION
COVID-19 Checklist: Resources, Regulations, Testing Sites Plus What's Open or Closed NJ Medicaid Families First Coronavirus Response Act Emergency Paid Sick Leave and Expanded Family & Medical Leave From the NJ Dept of Labor
COUNTY INFORMATION
Atlantic Bergen Burlington Camden Cape May Cumberland Essex Gloucester Hudson Hunterdon Mercer Middlesex Monmouth Morris Ocean Passaic Salem Somerset Sussex Union Warren
EDUCATION RESOURCES
COPAA Fact Sheet on Rights of Children with Disabilities During School Closures Parents Guide to Google Classroom Interactive Teaching Tools at No Cost from Learning Without Tears
HEALTH RESOURCES
Autism and the Coronavirus: Resources for Families Supporting Communication with Patients who have COVID-19 Ask the Docs Webinar on COVID-19
PARENTING RESOURCES
Tips for parents on special education schoolwork, socializing during COVID-19 Daily Facebook Live with Child Psycologists Social story about Coronavirus SPAN Fact Sheet on COVID-10 and Your Child with a Disability
ACTIVITIES FOR CHILDREN
Best Games Kids Can Play Virtually with Friends While Stuck at Home NJTV Learning Live Audible providing free audiobooks for kids
SELF CARE INFORMATION
How to Cope With Coronavirus Anxiety When We Don't Know What Will Happen Next Self Care Resources Free calming music and meditations from Calm Crisis Hotlines: You are not alone. Help is available.
MULTILINGUAL RESOURCES
FB Live in Spanish CDC Resource Page in Spanish Audible providing free audiobooks for kids in six different languages