Long COVID May Cause Disability and Eligibility for Services

Some people infected by the SARS-CoV-2 virus experience long-term symptoms—called Long COVID. If lasting symptoms significantly impact a person’s life, their ability to work, or their access to school, disability laws are in place to protect and support them.

Among federal laws that support disability rights are the Americans with Disabilities Act (ADA), the Rehabilitation Act of 1973 (which includes Section 504), and the Individuals with Disabilities Education Act (IDEA). Note that Part B of the IDEA supports special education services for ages 3-21, and Part C provides early interventions for children birth-3.

Disability protections are also provided by Section 1557 of the Patient Protection and Affordable Care Act. The U.S. Department of Health and Human Services with the Civil Rights Division of the Department of Justice provide guidance on the HHS.gov website: Guidance on “Long COVID” as a Disability Under the ADA, Section 504, and Section 1557.

The federal Administration for Community Living (ACL) published a resource that is a place to begin learning about where support is available: How ACL’s Disability and Aging Networks Can Help People with Long COVID. For people whose work is impacted by Long COVID, the U.S. Department of Labor’s Office of Disability Employment Policy provides information related to job accommodations, employee benefits, worker’s rights, and more.

If a student with Long COVID is impacted, they can be evaluated to determine eligibility for school-based services. For students already identified for school-based services, Long COVID might entitle the student to additional or adjusted services. The Office of Special Education and Rehabilitation Services (OSERS), issued a Fact Sheet July 26, 2021, explaining the rights of children who may have a disability condition related to Long COVID. The rest of this article focuses on protections for children and students.

Section 504 support

Section 504 is part of the Rehabilitation Act and includes protections for individuals accessing a public space, service, or program. A person of any age with a disability has the right to accommodations and modifications if their disability condition significantly impacts a major life activity, such as breathing, walking, learning…. Section 504 guarantees equitable access to opportunities publicly available to people without disabilities. If COVID infection has caused a disability condition because of its lasting impacts, then Section 504 protections may apply.

In school, a Section 504 Plan provides a student with support in general education. Criteria are broad and determined if the student has a disability condition that impacts any aspect of their educational access. If so, the student is eligible for support to meet their needs.

For example, a student with Long COVID might have impacts to their breathing, walking, attention span, or stamina. They may need accommodations for a late start, a shortened school day, a reduced workload, or a place to rest while at school. If mental health is impacted, they may need social-emotional or behavioral supports to continue accessing their general education curriculum and class spaces.

School-based IEP services

If evaluation determines that Long COVID impacts a student (ages 3-21) to such a degree that special education and related services are necessary, then the student may be eligible for an Individualized Education Program (IEP). One eligibility category for IEP services, for example, is Other Health Impairment (OHI). For a full list of eligibility categories see PAVE’s article: IDEA: The Foundation of Special Education.

An educational evaluation determines:

  1. Is there a disability?
  2. Is there significant educational impact?
  3. Does the student require Specially Designed Instruction and/or Related Services?

If Long COVID has created a condition in which all three criteria are met, then the student receives services with an IEP. If the student already has an IEP and a COVID infection has created new barriers to learning, then a new evaluation may be needed to determine what additional services the IEP team can consider.

Here are a few examples of how Specially Designed Instruction (SDI) and Related Services might be included in an IEP to support a student with Long COVID:

  • A teacher provides instruction differently to support a student whose ability to focus is significantly impacted by Long COVID. Progress toward a skill of attention/focus is tracked to see if there is improvement or if something about the teaching strategy needs an adjustment.
  • A teacher helps a student learn emotional coping strategies after Long COVID caused severe anxiety and mood dysregulation. A goal is set to track progress on this social emotional learning (SEL) skill.
  • A physical education teacher provides a specially designed PE program for a student with Long COVID whose symptoms get worse with physical exertion. Goals are set, and progress is monitored. See PAVE’s article about Adapted PE.
  • A student with lingering physical symptoms of COVID receives physical or occupational therapy as a Related Services through the IEP.
  • A student with psychological impacts from the illness receives counseling as a Related Service on the IEP.

Of course, this is a short and incomplete list of possibilities. IEP teams are responsible to develop programming that is individualized to meet a student’s unique and specific needs. Evaluation data is critical in development of the services and programming, and families have the right to request an Independent Educational Evaluation (IEE) at district expense if they don’t believe the district’s own data is accurate or comprehensive enough to develop an appropriate IEP.

The primary entitlement of a student receiving school-based services is FAPE—Free Appropriate Public Education. FAPE means that services enable progress that is appropriate in light of the child’s circumstances. If Long COVID has disabled a student’s ability to access school appropriately, then they may be entitled to FAPE. The services that provide FAPE are determined individually and by a team that includes family participants.

Early intervention services

Health officials are reporting developmental delays related to COVID infections. Young children, Birth-3, who have been ill with COVID and have ongoing symptoms may be eligible for disability protections from the IDEA Part C, which provides federal funds for early intervention services delivered through an Individualized Family Service Plan (IFSP). According to the OSERS document about Long COVID:

“A child suspected of having a disability should be referred as soon as possible, but in no case more than seven days, after the child has been identified. With parental consent, a timely, comprehensive, multidisciplinary evaluation must be completed, and if the child is determined eligible, a child and family assessment must be conducted to determine the appropriate early intervention services and supports for the child and family.”

Resources to help you

PAVE provides resource collections to support families of children in various ages and stages:

PAVE’s Family-to-Family Health Information Center (F2F) provides direct assistance for questions related to health and wellness, insurance, and access to medical services. For questions about early intervention or school-based services, our Parent Training and Information (PTI) staff can help. Click Get Help from our home page at wapave.org to request individualized support.

Families with Disability Concerns Take Extra Care when Planning for Emergencies

A Brief Overview

  • All families prepare for emergencies, but extra planning is critical when a loved one has a disability.
  • The Family-To Family Health Information Center provides Information about COVID-19 and updates about local, regional, and statewide healthcare policies and programs.
  • Virginia Commonwealth University offers an Emergency Preparedness Tool Kit for People with Disabilities through its university center called Partnership for People with Disabilities. The downloadable, 29-page booklet includes checklists and resources.
  • The Federal Emergency Management Agency (FEMA), an agency of the United States Department of Homeland Security, also provides a downloadable brochure: Preparing Makes Sense for People with Disabilities.
  • Military families, each installation has a Comprehensive Emergency Management Plan (CEMP 10-12). Read on for links to specific military resources.
  • This article includes a variety of resources and ideas about how to be informed and organized, with a disability-specific toolkit and emergency plans that are ready to roll if something unexpected does occur.

Full Article

COVID-19 has highlighted a need for emergency planning, and Washington State families might consider additional contingencies to plan for: winter snowstorms, flooding, wildfires, volcanoes, earthquakes…. The planning can alleviate stress and create a sense of confidence that a plan is in place for everyone’s safety if something unexpected does occur.

To be fully prepared, a family may need an emergency plan and a survival kit to support to a loved one with additional needs that are specific to a disability. Following are guidelines for getting organized and ready, with each person’s individualized needs in mind.

While building an emergency plan and toolkit, families may need to consider how to include tools and strategies for providing a sense of comfort and safety for individuals with anxiety, sensory needs, or behavioral challenges. A favorite blanket, stuffed toy, or noise cancelling headphones might be part of the kit. A handheld electronic device might provide a sense of normalcy; if one is included, be sure chargers or batteries are also part of the toolkit.

Gathering the toolkit ahead of time can enhance a sense of calm and save time when quick action is needed. Family to Family Health Information Center at PAVE has a page set up with tools and links around disability and special healthcare needs.

Be informed

Some disaster scenarios include sheltering in place, and others require movement to a safe location. The Red Cross provides information on a page titled Be Informed to help determine which types of emergencies are most likely in a designated community. Some areas are more prone to forest fires, floods or earthquakes, for example. Consider whether local public systems share information or alert the public if something is happening or about to happen. Will there be a telephone alert or a broadcasted siren? Will there be an emergency broadcast to tune in? The Emergency Alert System (EAS) includes a statewide list of radio stations that broadcast emergency alerts by area.

Consider whether there are shelters nearby, or an evacuation route. The Red Cross encourages people to download the agency’s mobile app to receive local alerts that can include emergency-specific instructions in real time. The agency also provides a page dedicated to disaster safety that takes a step-by-step approach for people with disabilities. Included are guidelines for creating a personal assessment and registering with a local emergency assistance program.

You can also download the FEMA app to get weather alerts from the National Weather Service for up to five different locations.

Make a plan

Create escape routes that are accessible to everyone within the household. Choose a meet-up spot after everyone has evacuated the home, property, or neighborhood. Consider accessibility based on the entire family’s needs: For example, will someone need to arrive at the meet-up spot by wheelchair? If someone will need a helper to evacuate, designate a helper and a back-up person to provide that support.

Tell emergency contacts about the family’s plan. Consider telling neighbors or nearby friends about where medications or mobility assistance devices (crutches, wheelchairs, walkers) are stored in case help is needed to get those things. The plan includes what may happen before, during and after a disaster.

The Red Cross provides a template for a 3-step plan, to be shared and verified with everyone who might be involved or recruited to help:

  1. All household members discuss how to prepare and respond to the types of emergencies most likely to happen where they live, learn, work and play.
  2. Identify responsibilities for each member of the household and plan a way to work as a team.
  3. Practice as many elements of the plan as possible.

Military Families

Military families may have unique and specific concerns. Each installation provides support for a Comprehensive Emergency Management Plan (CEMP 10-12). Additionally, families might seek assistance from the family support office through the Exceptional Family Member Program (EFMP) or a Family Resource Specialist (Coast Guard).

Here are additional places to seek information about emergency planning for military families:

Telling Your Story with a Purpose: How to Inspire Action in Two Minutes

Every person’s story has the potential to impact how others think or act. Disability rights have been legislated because of individuals who spoke up and sparked change. This video introduces a strategy for telling a potent story in two or fewer minutes, using your own hand to guide the process. Think of this as a hand model for an inspirational elevator speech to improve or inspire:

  • Self-advocacy
  • Public comment
  • A meeting with public officials
  • Legislative forums or candidate meetings
  • Community education

 The Arc of Washington State provides pathways for people to participate in legislative advocacy. The Arc serves people with intellectual and developmental disabilities of all ages and their families. 

Some staff members at PAVE are certified to teach Telling your Story with a Purpose, a training created by the state’s Department of Health and Seattle Children’s Hospital. For support to create your story, fill out a PAVE Helpline request, and a trained staff member will contact you.

Questions to consider first:

  1. What is the challenge or problem that you, your child or your family faces? Think of a problem that also affects other people and families. Consider writing one sentence about people in general and one sentence about your own story, child, or family. 
  2. How does this challenge affect others?
  3. How might this challenge affect others if nothing changes?
  4. What needs to change?
  5. What can be done to improve the situation?
  6. Who has the power to make a change? 

Key information for your story:

  1. Who are you?  Be sure to say your name and the district, city, or town you live in.
  2. If you want to include information about other people be sure you have permission before sharing anything confidential, such as names, ages, or health information.
  3. Clearly and simply describe the problem or challenge.
  4. Explain why this is important.
  5. Include a short story (4-5 sentences) about how this issue has affected you and your family. If possible, use a positive example – a situation where things went well and why you want others to have a similar experience.
  6. What do you want your listener to do? State your request in one sentence with 30 or fewer words. Avoid a general request for “support.” Provide a clear action:
    • “I ask you to vote for…”
    • “I want you to change this policy in order to…”
    • “I want you to fund a program that…” 
  7. Stop and check: Consider if your comments might make the listener feel criticized or attacked. Focus on the solution. Make sure you’ve included statements about how others in the community can benefit.
  8. End by restating your request and saying thank you. When possible, thank the listener for something they have done in the past that you appreciate–voting for a bill, serving on a committee, funding a program.