When the COVID-19 pandemic arrived, the world suddenly became fluent in new phrases: “flatten the curve,” “six feet apart,” “you’re on mute,” and, of course, “unprecedented times,” which was used so often it deserved its own face mask. But while public attention focused on hospitals, vaccines, school closures, and remote work, one community was too often pushed to the edge of the conversation: persons with intellectual disabilities.
The phrase “forgotten in the pandemic” sounds dramatic, but for many families, caregivers, direct support professionals, teachers, and self-advocates, it was not a slogan. It was Tuesday. It was the day a group home could not find enough staff. It was the week a student lost speech therapy because the service could not be delivered online in any meaningful way. It was the hospital policy that blocked a trusted support person from helping a patient communicate. It was a vaccine appointment website that might as well have been written in ancient pirate code.
Persons with intellectual disabilities, also called people with intellectual and developmental disabilities in many public health and policy discussions, were not simply “another vulnerable group.” They faced a layered crisis: higher medical risk, disrupted daily supports, inaccessible information, isolation, educational setbacks, and discrimination in health care. The pandemic did not create these inequities from scratch. It pulled the curtains open, turned on the fluorescent lights, and showed how fragile many systems already were.
What intellectual disability means in real life
Intellectual disability affects learning, reasoning, problem-solving, communication, and adaptive skills used in daily life. It is not one single experience. One person may live independently with occasional support. Another may need help with medication, transportation, bathing, meals, communication, or medical decisions. Some people speak clearly. Others use gestures, devices, pictures, or trusted supporters to communicate. Some also have autism, cerebral palsy, Down syndrome, epilepsy, heart disease, diabetes, respiratory conditions, or complex medical needs.
That variety matters. During COVID-19, a one-size-fits-all public health strategy often fit people with intellectual disabilities about as well as a toddler’s raincoat fits a linebacker. Rules were written for the “average” person, but people do not live average lives. Public health messages assumed everyone could read complicated guidance, book appointments online, tolerate masks, understand sudden schedule changes, and safely isolate without hands-on support. Many people with intellectual disabilities needed something more practical: plain language, visual tools, routine, trusted helpers, accessible transportation, and health systems that listened.
Why COVID-19 hit persons with intellectual disabilities harder
COVID-19 was dangerous for many reasons, but for persons with intellectual disabilities, risk was often multiplied by health conditions, living arrangements, and service dependence. Many people with intellectual and developmental disabilities have underlying conditions that can increase the chance of severe illness. Some live in congregate settings where staff move between residents, making infection control more complicated. Others rely on direct support professionals or family caregivers for essential daily activities, meaning “just avoid contact” was not realistic advice. You cannot socially distance from the person helping you eat breakfast, take medication, or get out of bed.
The pandemic also exposed a painful truth: public health systems often collect better data on restaurant reservations than on disability status. In many places, COVID-19 data did not consistently identify people with disabilities, especially those living outside nursing homes. Without good data, policymakers could not easily see the scale of illness, death, service disruption, or unmet need. And when a population is not counted, it is too easy for decision-makers to act as if the problem is smaller than it is.
The information gap: when guidance was technically public but practically useless
One of the most overlooked failures of the pandemic was communication. Guidance changed quickly, and sometimes it had to. Science learns; viruses do not politely submit their plans two weeks in advance. But public health communication often arrived in dense paragraphs, press conferences, fast-moving news crawls, and websites that required strong literacy, internet access, and patience. That left many persons with intellectual disabilities dependent on families, staff, or advocates to translate urgent information into something usable.
For someone with an intellectual disability, “quarantine for five days after symptom onset unless symptoms persist” may not be meaningful. A better message might be: “Stay home. Rest. Wear a mask near others. Your support person will help you decide when it is safe to go out.” Plain language is not childish language. It is respectful language. It says, “You deserve to understand what is happening to your own body and your own life.”
Accessible communication should have been available from day one: easy-to-read vaccine explanations, social stories about testing, visual schedules for isolation, videos with captions and American Sign Language, materials in multiple languages, and guidance designed with people with disabilities rather than merely about them. Some excellent accessible resources were eventually created, but “eventually” is a hard word during an emergency. A delayed ramp is still a barrier.
Direct support professionals: essential workers who were treated as optional
Direct support professionals, often called DSPs, are the backbone of community living for people with intellectual disabilities. They help people work, shop, manage health routines, build relationships, and participate in everyday life. During the pandemic, they became infection-control workers, emotional support coaches, technology troubleshooters, substitute activity planners, family connectors, and sometimes the only familiar face a person saw for weeks.
Yet the direct support workforce entered the pandemic already underpaid, understaffed, and under-recognized. Then COVID-19 added personal protective equipment shortages, quarantine rules, illness, burnout, transportation problems, and fear of carrying infection to loved ones. Some families lost in-home support when workers could not safely enter. Some providers struggled to keep group homes staffed. Some DSPs worked double shifts because there was simply no one else.
When support breaks down, independence breaks down. A missed shift is not a minor inconvenience when it means a person cannot shower, eat safely, take medication, attend a telehealth appointment, or calm down during a frightening routine change. The pandemic showed that direct support is not a “nice extra.” It is infrastructure, just like roads, electricity, and Wi-Fiexcept society notices Wi-Fi outages much faster.
Health care barriers and the fear of being devalued
One of the most alarming issues during the pandemic was the fear that persons with intellectual disabilities would be denied equal access to life-saving care. In the early emergency, some crisis standards of care raised concerns that disability could be used, directly or indirectly, to deprioritize patients when ventilators, beds, or staff were scarce. Disability rights organizations pushed back hard, reminding hospitals and states that civil rights laws do not take a vacation during a pandemic.
For many families, the fear was not abstract. They worried that a doctor unfamiliar with their loved one might mistake disability for poor quality of life. They worried that communication differences would be read as lack of awareness. They worried that no-visitor policies would keep out the very person who could explain symptoms, reduce anxiety, and help the patient cooperate with care. A support person is not always a “visitor.” Sometimes that person is the communication bridge between a patient and survival.
Hospitals had a difficult job during COVID-19, and many health care workers performed heroically under brutal conditions. But heroism at the bedside cannot fully compensate for flawed systems. Equal care requires planning: accessible intake forms, disability training, supported decision-making, flexible visitor policies, and a clear rule that disability alone must never determine a person’s worthiness of treatment.
School closures and the quiet collapse of special education supports
For students with intellectual disabilities, school is often much more than academics. It is speech therapy, occupational therapy, physical therapy, behavioral support, social practice, meals, routine, assistive technology, and a team of adults who know how to help. When schools closed, many of those services were reduced, delayed, or moved online. For some students, virtual learning worked reasonably well. For others, it was like being handed a violin and asked to perform surgery.
Parents suddenly became teachers, therapists, behavior specialists, tech support, and snack managers, often while trying to work from home. Students who relied on hands-on prompting or specialized equipment could not simply “log in.” Some lost skills. Some experienced anxiety, sleep problems, aggression, withdrawal, or regression. IEP meetings were delayed. Evaluations slowed. Families had to fight for compensatory services while also trying to keep everyone healthy.
The impossible choice was especially cruel for families of children with medical risks: send the child back to in-person services and risk infection, or keep the child home and risk developmental and educational harm. Public debates often framed school reopening as a simple argument between safety and learning. For students with intellectual disabilities, it was more complicated. Safety and learning were both essential. They needed layered protection, individualized planning, and honest partnershipnot slogans shouted across school board meetings.
Isolation, mental health, and the loss of ordinary joy
The pandemic took away many ordinary routines that help people with intellectual disabilities feel secure: day programs, jobs, church services, sports, volunteer roles, family visits, therapy appointments, favorite restaurants, and weekly trips to the store. For some people, losing routine is not just annoying. It can be deeply destabilizing.
Imagine being told your favorite activity is canceled, your support worker is gone, your family cannot visit, everyone is wearing masks, and the news keeps showing frightening imagesbut the explanation you receive is rushed, abstract, or inconsistent. That is not just inconvenience. That is a recipe for fear.
Many people with intellectual disabilities experienced loneliness, boredom, grief, and anxiety. Some did not understand why loved ones stopped visiting. Others understood too well and became afraid of getting sick or making someone else sick. Families reported increased behavioral challenges, sleep disruption, depression, and caregiver exhaustion. The emotional toll did not always make headlines, but it was real. A person can survive a virus and still be harmed by the world shrinking to one room.
Vaccine access was not only about eligibility
Vaccines changed the pandemic, but access was not equal. Even when persons with intellectual disabilities became eligible, they still faced barriers: confusing websites, lack of transportation, sensory concerns, needle anxiety, inaccessible clinics, limited appointment help, and unclear prioritization rules. Some people needed extra time, a quiet space, a familiar supporter, or plain-language preparation. That is not special treatment. That is effective health care.
Vaccine outreach worked best when it met people where they were: mobile clinics, group home partnerships, trusted primary care doctors, disability organizations, easy-to-read materials, and patient scheduling help. The lesson is simple enough to fit on a bumper sticker: access is not access until the person can actually use it.
Long COVID and another risk of being forgotten
As the emergency phase faded, another concern remained: long COVID. Symptoms such as fatigue, brain fog, breathing problems, sleep disruption, dizziness, and mood changes can be difficult for anyone to describe. For a person with an intellectual disability, long COVID may show up as reduced stamina, new behavior changes, loss of interest, trouble with routines, or increased need for support. If clinicians do not ask the right questions, symptoms may be dismissed as “just behavior” or “part of the disability.”
This is one of the most important post-pandemic lessons. Health changes in people with intellectual disabilities deserve careful evaluation. Pain, fatigue, anxiety, and confusion may be communicated through behavior, facial expression, appetite, sleep, or withdrawal. Families and DSPs often notice changes first. Their observations should be treated as valuable clinical information, not background noise.
What the pandemic taught us about inclusion
The pandemic taught a hard lesson: inclusion cannot be improvised during a crisis. If accessible communication, disability data, direct support funding, emergency planning, and civil rights protections are weak before disaster strikes, they will not magically become strong when everyone is panicking and buying suspicious amounts of toilet paper.
Better pandemic planning must include persons with intellectual disabilities from the beginning. Public health departments should collect disability-related data respectfully and consistently. Emergency alerts should be available in plain language, multiple languages, captions, ASL, audio, and visual formats. Health care systems should train staff on intellectual disability, supported decision-making, and communication. Schools should have continuity plans for therapies and IEP services. Governments should treat DSPs as essential workers with wages, training, protective equipment, and policy recognition to match.
Practical changes that would make a real difference
First, create plain-language health materials at the same time as standard guidance, not months later. Second, include self-advocates and families in emergency planning committees. Third, protect access to support persons in medical settings when needed for communication or behavioral support. Fourth, strengthen home- and community-based services so people are not forced into more restrictive settings during emergencies. Fifth, fund the direct support workforce as if lives depend on itbecause they do.
Finally, stop treating disability as a side issue. Persons with intellectual disabilities are students, workers, neighbors, church members, athletes, artists, taxpayers, siblings, and friends. They are not footnotes in emergency planning. They are part of the public in public health.
Experiences related to persons with intellectual disabilities forgotten in the COVID-19 pandemic
One of the clearest experiences from the pandemic was how quickly families became the emergency backup system for everything. When day programs closed, parents and siblings often had to fill every hour of the day. A mother supporting an adult son with an intellectual disability might suddenly become his job coach, recreation director, exercise partner, medication manager, and emotional translator. She might also be working remotely, caring for another child, and trying to remember whether she disinfected the groceries or just stared at them with suspicion. Humor helped, but exhaustion was the main character.
Another common experience involved routine. Many people with intellectual disabilities rely on predictable schedules. Monday means the bus comes. Wednesday means bowling. Friday means pizza with friends. When those anchors disappeared, some people felt lost. Families described making visual calendars with big red “closed” signs, creating indoor walking routes, or holding pretend restaurant nights at home. These creative solutions mattered. They were not cute little crafts; they were survival tools.
Communication also became a daily challenge. Some people did not understand why masks were necessary. Others understood the rule but could not tolerate the feeling of fabric on their face. Some were frightened when familiar staff appeared wearing gowns, gloves, and face shields. One support worker described introducing PPE like a costume reveal: “It is still me under here. I look like a nervous astronaut, but it is still me.” That kind of patient explanation made a difference because trust often travels through familiar voices, gestures, and routines.
Families also experienced the pain of separation. In group homes and supported living settings, restrictions sometimes meant fewer visits from relatives. A person might wonder why a parent stopped coming and assume they had done something wrong. Video calls helped some people, but not everyone could use them well. A screen cannot replace a hug, a shared snack, or the comfort of sitting beside someone who knows your whole story.
In schools, many parents felt they were watching progress slip away in slow motion. A child who had worked for months to use a communication device might stop using it without daily practice. Another who had learned to follow classroom routines might struggle when learning moved to a kitchen table beside a barking dog and a sibling’s math worksheet. Teachers tried hard, but remote special education often revealed the limits of good intentions. You cannot email a sensory room. You cannot download a physical therapy session and expect the same result.
Health care experiences were mixed. Some clinics became more flexible with telehealth, which helped families avoid transportation challenges. But telehealth also created barriers for people who needed hands-on assessment, communication support, or accessible technology. A short video visit could work for a prescription refill, but not for every concern. The best providers listened closely to caregivers and self-advocates. The worst assumed that if a patient could not explain symptoms in a standard way, the symptoms were not serious.
There were also moments of resilience. Self-advocates spoke up about wanting clear information. Families built new routines from scratch. DSPs showed up when showing up was risky. Disability organizations created plain-language guides, hosted virtual social events, and fought discriminatory policies. Communities learned that accessibility is not a luxury feature, like heated seats in a car. It is the steering wheel.
The deepest experience, however, was the feeling of being remembered too late. Persons with intellectual disabilities should not have to wait for advocates to shout before systems notice them. In the next public health emergency, the goal should not be to “include disability” after the plan is written. The goal should be to write the plan with disability at the table from the first meeting. Preferably a table with plain-language notes, working microphones, accessible transportation, and snacksbecause every good meeting is better with snacks.
Conclusion: remembering is a public health responsibility
Persons with intellectual disabilities were too often forgotten in the COVID-19 pandemic, but the solution is not pity. The solution is planning, respect, funding, data, accessible communication, and equal rights in practice. The pandemic showed that vulnerability is not only about a diagnosis. It is also about whether society builds systems that include people or systems that make them fight for the basics during the worst possible moment.
COVID-19 will not be the last public health crisis. The question is whether we will carry forward the lessons or tuck them away like an old box of cloth masks in the back of a closet. A fairer future means making sure persons with intellectual disabilities are counted, heard, protected, and included before the next emergency begins. Forgetting them once was harmful. Forgetting them again would be a choice.
