This Article discusses some of the challenges that families of children and adults with special needs have faced during the pandemic. Many people in families with special needs are in high-risk categories. Some of the people whose experiences are discussed in this Article lost immediate family members during the pandemic.1 We hope that this Article is helpful to the family law community in working with families with special needs children, and to policymakers in learning from the COVID-19 experience to prepare for any future calamities that may present similar challenges.
The authors reached out to people in the special needs community and invited them to share their experiences during the COVID-19 pandemic.2 The respondents included parents who have children with moderate to severe special needs. Some of the families included both children and parents with significant special needs. The participants also included therapists. The people who expressed interest in participating were interviewed electronically or by telephone. To protect their privacy, the respondents are identified in the footnotes by “Individual #X,” rather than by their actual names. The survey team conducted the interviews during the summer and early fall of 2020.
Additionally, we have provided an Appendix with summaries of selected online resources to consult for further information. We hope that this Article assists the family law community in representing families of individuals with special needs.
I. Challenges of COVID-19 for Children with Special Needs and Their Families
The COVID-19 pandemic was not easy for most families, but for families with children who have special needs, the pandemic magnified the difficulties they already faced on an everyday basis. Also, due to their unique situations and needs, many of these children and their families may have suffered more intensely than the average individual.
Based on the interviews and additional resources discussed in more detail later in this article, there are eight primary areas in which children with special needs and their families experienced extraordinary challenges during the COVID-19 pandemic:
- Technological hurdles
- Challenges to accessing education
- Challenges to accessing therapy and day programs
- Challenges to accessing medical services
- Loss of routine
- Loss of socialization
- Loss of respite care
- Financial consequences
Some of these areas overlap, but we will address each theme separately.
II. How Technological Hurdles Affected Children with Special Needs During the COVID-19 Pandemic
People with special needs faced technological difficulties during the pandemic. With the social isolation caused by lockdown orders and healthcare guidelines, the only way that many people achieved human interaction was through technological means like Zoom or Uber conferences and other communication means that relied on the internet.
People all over America who do not have disabilities or a child with special needs faced challenges in trying to keep up with their job responsibilities while working from home. They experienced things like:
- Weak or slow internet signals, or no internet at home.
- Getting bumped out of meetings due to glitches.
- Having insufficient bandwidth to see the video content or hear the audio of meetings.
- Trying to multitask and balance work-life tasks and the needs of the family due to a lack of childcare during the pandemic.
- Not having enough internet-enabled devices to meet the needs of all the family members who had to work and participate in school from home.
The interviews revealed that children with special needs and their families often faced additional technological hurdles in these situations. For example:
- A hearing-impaired child might not get much benefit from an online class session that does not have real-time captioning. Also, if the people speaking are not on the screen as they talk, the children cannot read their lips to understand what they are saying. If the teacher uses slides, charts, or other images on the screen, a hearing-impaired child cannot access what the teacher says about those items during the online class session.
- Some material was delivered only visually, without a recorded explanation of the items or content. A visually impaired child would lose out on that material as well.
- Many online meetings did not include basic accessibility options like the ability to magnify the size of words and numbers on the screen. A child who needs words and numbers enlarged due to visual impairment would not be able to learn the material presented in that class session.
- Some children communicate through the use of electronic communication devices. For example, a child who is nonverbal might rely on a portable electronic communication device that “speaks” for him when he presses keys or types words on the equipment. Online class sessions often did not work well with this equipment, which prevented these children from meaningful class participation.
- Some children with special needs rely on equipment for their medical and therapeutic services. Much of this equipment is not designed for home use, so the children can only access their devices at the office of the doctor or therapist. For example, kidney dialysis machines and large physical therapy equipment are not located in the home setting. During the pandemic, the children could not access this equipment. By way of example, the health and strength of a child deteriorates after missing many months of physical and occupational therapy. For a medically fragile child, this situation could result in more severe disability, a shorter lifespan, and even death.
Many children with special needs live in poverty with only one wage earner in the household.3 These families could not afford to go out and spend hundreds or thousands of dollars on new technological devices and equipment during the pandemic.
III. Why Access to Education Was More Difficult for Children with Special Needs Than Other Children During the Pandemic
School at the K–12 level is a significant part of life for many people with special needs. Special education students receive a blend of general education and special education as defined by the student’s Individualized Education Program (IEP). In some school districts, special education teachers and therapists provide modified curriculum and therapy, either as pull-out or push-in.
When a student receives pull-out hours, the student leaves the general education classroom and gets instruction or therapy in a special education classroom. Push-in hours refers to the time a student has a special education teacher, therapist, or para-professional in the general education classroom, offering coaching or modifications as needed.
The COVID-19 pandemic disrupted the school days of millions of students across the United States when they had to close classrooms and shift abruptly to distance learning.4 Students without special needs reported massive problems dealing with the change to distance learning. They struggled with the loss of their normal routine, socialization, and in-person learning.
Imagine how much more challenging it has been for students with special needs and their families. Whether the child has cerebral palsy, Down syndrome, visual impairment, autism, or another special need, these children and their families experienced multiple crises throughout the COVID-19 lockdown.
Schools struggled to meet the needs of children with disabilities during the pandemic.5 Many school districts scrambled to try to deliver educational services to their mainstream children through remote learning.
In the frenzy of the crisis, particularly in the early months, the heightened needs of children with disabilities were not adequately addressed. Special education teachers did not have the resources or training to provide through remote learning what special needs children needed.
Here is an example of how school closures during the pandemic impacted students receiving special education services and their families in one school district.
The Special School District of St. Louis County, Missouri (SSD), serves more than 24,000 students with disabilities.6 The SSD conducted a survey of SSD students, families, special education teachers, and administrators to learn about the experiences of people in each of those groups when they had to suddenly transition from in-person school and therapy to distance learning.7
The Distance Learning Plan Review (survey) includes the responses of 10,379 individuals (313 students, 8,423 families, 1,458 special education teachers, 91 CTE (career and technical education)/courts (juvenile detention and residential treatment) programs, and 94 administrators).8 Some “family” responses included parents or other family members who responded on behalf of the student/child.9 In general, the survey asked participants to provide information about what worked well with the transition to distance learning and what needed improvement.10
Please keep in mind that the SSD provides more than special education services. The SSD performs multiple types of therapy and modifications for the students who have IEPs in 265 public schools in 22 school districts in St. Louis County.11
Also, the SSD operates two technical high schools to give SSD students job training through experiential learning in 30 different programs.12 The SSD serves students in public, private, parochial, independent, and early childhood schools, plus home-schooled children and those who are homebound for medical or other reasons.13
Here are some highlights of student and family experiences reported in the survey:14
- The biggest challenge most families faced to participating in therapy and distance learning was having competing priorities. Many families experienced illness, work commitments, and other family stressors during the COVID-19 pandemic.15
- “Families who had more than one child, children with multiple disabilities, or low income were often in crisis.”16
- Parents had to spend a substantial amount of time supporting the children to complete their distance learning and therapy because the materials given to the students could not be completed by the children independently.17
- The SSD special education teachers were in contact with the students two times a week or more, according to 79 percent of students and 63 percent of families.18 However, families were overwhelmed with the volume of communication they received from multiple sources at the SSD. The messaging they received was impersonal and confusing.19 Families did not know whom to contact for help.20
B. Process & Access
- The SSD and the student’s home school (which provides general education to the student) did not coordinate. They both sent the families and students full sets of materials, leaving families and students overwhelmed. There was no explanation of which general education materials were optional because of coverage in the special education materials.21
- Many students had limited access to computers, internet, printers, and assistive technology. The special education teachers’ responses confirmed this problem, as 49 percent of them reported technology concerns like computer and internet as a barrier to engaging with students and families.22
- Parents with limited technology at home also had limited transportation options to get to the designated locations to pick up instructional materials.23
- Both teachers and administrators reported that the Distance Learning Plan did not specifically address alternative instructional delivery for special education students without access to technology.24
- Some teachers distributed worksheets as nonmodifiable PDFs, which meant that the students had to have access to a printer to complete the work, rather than being able to complete and submit the worksheets online. Some students did not have access to printers, so they could neither complete nor turn in their schoolwork.25 Students using Chromebooks could not access some of the sites the teachers or districts used.26
- Different teachers used different platforms or learning management systems (LMS), which made it difficult for students and families to find the materials they needed and stay on top of their work.27
- Many special education students use assistive technology, like readers for visual impairment. Their assistive technology did not work with Google forms, which barred them from accessing instructional material or doing their schoolwork.28
- Parents could not access messages from teachers and other staff.29 Parents could not access their students’ accounts to stay up to date on emails and other information.30 Zoom links did not work.31
- Students needed system permissions to access materials but did not have those permissions.32
- Both parents and special education teachers reported that they were uncomfortable or unfamiliar with the software or technology they had to use for online learning.33
- Overall, technology challenges with software, connectivity, and access were exacerbated for students with disabilities.
- Many families said the students’ learning did not advance during the lockdown, despite the best efforts of the teachers. Parents reported that the materials students received did not cover all the subjects and repeated things the students had already learned.34
- Meeting times and schedules were inconsistent, causing anxiety and confusion for the students.35
- Some students received no therapy at all, while other students received very little, due to limited or no access to technology.36
- Virtual instruction simply is not suitable for all students with special needs. A person with impaired vision might not be able to complete a worksheet. Students with cognitive delay, attention deficit hyperactivity disorder (ADHD), autism, reading disability, and behaviors might not be able to learn well in an online environment.37
- During in-person instruction, a general education or special education teacher can adjust the material in the moment to reach students at multiple levels. Parents said that some of the material they received during the pandemic was not at the right level for the students.38
- IEP-mandated modifications were not done at the school level. Schools expected parents to make the modifications their children would need.39
- Parents had to try to administer therapy to their children using informational packets from the schools. Parents were not trained or professional therapists.40
- Ninety percent of the student survey participants said they felt supported by the district during distance learning.41
- Students missed their classmates and would have enjoyed interacting with them in Zoom calls and group projects while doing schoolwork.42
The SSD used the information obtained from this survey to improve the communication, process, access, technology, and instruction issues discovered through the survey.43 Including these items in this Article provides a glimpse into how the COVID-19 pandemic affected the lives of families with special needs.
There is a silver lining to these struggles that schools experienced in their attempts to deliver education services remotely during the pandemic. A multidisciplinary panel of international experts on autism (hereinafter referred to as “expert panel”) held a roundtable discussion on how the pandemic affected people with autism.44 The experts included professors, public health providers, medical doctors, psychologists, authors, and philanthropists.45 Their guidance may apply to many people with special needs, including people with autism as well as other individuals with disabilities.
The expert panel stated that one good thing that has come out of the sudden shutdown of schools is that educators in traditional learning environments were forced to take giant leaps forward in learning how to deliver content to students in a variety of formats.
The experts see this as a sea change in education, in that students can have access to education in different learning formats, one better suited to some students. Students with autism have been asking for accommodations like these for decades.46
IV. People with Special Needs Were Unable to Access Therapy Services and Day Programs
The interviews with members of the special needs community revealed that the children missed out on much-needed therapy and day programs during the COVID-19 shutdowns. For example, a parent of a young adult with cerebral palsy reported that the teen lost both his day program through United Cerebral Palsy and the UCP respite home he went to every other weekend.47 The programs could not operate because of COVID-19.
The mother of a teenaged daughter with Down syndrome, seizure disorder, a lung disorder, and other significant medical problems reported that her daughter’s applied behavioral analysis (ABA) therapy and behavioral health services got canceled.48 The services could not continue through telemedicine because of the limitations of Zoom and because the child experienced challenges with interacting over Zoom.49
Even when some facilities reopened with careful precautions designed to keep the staff and the clients of the therapy and day programs relatively safe, participating in these programs was not possible for many people with disabilities. Social distancing, also called physical distancing, limits many types of hands-on therapy.
Some children with developmental disabilities might not understand or be able to comply with the restrictions. A person might have underlying medical conditions that place him at a high risk of not surviving COVID-19.
V. How the Limited Access to Medical Care Because of COVID-19 Restrictions Impacted People with Special Needs
When people who live with medical issues on a daily basis cannot get the healthcare they need, their conditions may worsen. They can face greater impairment for the rest of their lives, higher medical bills, and loss of the enjoyment of life.
One bright note from the pandemic is that telehealth services are now far more available than ever before, for routine medical and mental health issues. In March 2020, as the COVID virus began its spread, the mental health community began its outreach to people impacted by the pandemic.50 One sweeping change that affords access to help during the COVID pandemic is the elimination of restrictions about telehealth.
Telehealth, also known as telemedicine, allows the treatment of patients remotely, in an online format or by telephone.51 The U.S. Department of Health and Human Services (HHS) lifted restrictions and eased access to telehealth conferences, including psychological treatment.52
VI. The Intense Effect of the Loss of Routine on Children with Special Needs
The expert panel explained why the loss of routine can affect a person with special needs more than the average person.53 Disrupted routines can pose extreme difficulty for people with autism and other special needs.54
The mainstream supports being offered for neurotypical children and adults do not meet the needs of many people with autism. Providing consistency and predictability as much as possible and setting up visual schedules for the “new normal” can reduce stress. Also, many people with autism are “emotional resonators,” meaning they take on the emotions of people around them.55 It is vital that people in their lives stay emotionally calm to prevent the autistic individual from becoming agitated.56
Uncertainty plays a huge role in the mental health of people with autism, particularly in the form of anxiety.57 It is difficult for people with autism to have predictability when they are unsure about what is going to happen on both a personal and global level.58
The expert panel suggested that people with special needs should do what they need to do during pandemics to stay healthy.59 In addition to avoiding catching the illness of the pandemic, they also need to start new routines to replace their old, familiar routines. They should eat healthy food, get physical exercise and sunlight, and maintain their existing social connections while building new ones.60
VII. Children with Special Needs Suffered from the Lack of Socialization During COVID-19
Contrary to a popular belief that people with special needs are antisocial, many parents said their children missed their friends and the experience of going to school and regular activities. Some people who are introverts found that one person’s isolation is another person’s solitude, but even solitude can lose its appeal eventually.
The expert panel cautioned that the social isolation and loneliness abruptly caused by the pandemic caused emotional pain to people with autism and other special needs.61 The experts were concerned about social distancing impacting mental health and increasing the risk of suicidal thoughts and behaviors.62
VIII. How the Loss of Respite Care During COVID-19 Affected Families of Special Needs Children
Respite care is a service that some agencies provide to give caregivers some down time so that they can rest, run errands, and avoid burnout. Raising a child with special needs, particularly as a single parent, can be like working as an ICU nurse 24 hours a day, seven days a week, month after month with no end in sight.
During the pandemic, respite care services had to close their doors, leaving countless families without these essential services. Some parents had to quit their jobs to take care of their children due to the lack of respite, day programs, and schooling. Many of these families were already teetering on the brink of poverty. Respite services help families function and participate in society and the economy.
IX. The Financial Fallout from COVID-19 on the Families of Children with Special Needs
During the pandemic, families with special needs suffered in ways that the average American family can scarcely imagine. Parents were burdened to the breaking point with trying to juggle:
- Working remotely.
- Providing the medical assistance their children needed.
- Serving as a general education and special education teacher to their children.
- Trying to put food on the table after losing their jobs.
- Agonizing over whether to go out to an essential job while leaving a special needs child home alone because the schools were closed.
- Serving (in effect) as a physical therapist, occupational therapist, respiratory therapist, speech therapist, and/or provider of many other types of therapy the child typically receives at school.
- Taking care of other children in the family.
When the child with special needs could not go to school, day programs, or respite care, that fact affected the child and the entire family.
X. How the Federal Relief Programs Did Not Meet the Needs of the Special Needs Community During the Pandemic
The Arc has been advocating for families with disabilities during the pandemic. It urged Congress to provide paid leave for caregivers of people with disabilities.63 Even before COVID-19, many families with special needs teetered on the brink of financial disaster.64 They have little in savings because of their high medical expenses and the need for family members to help with caregiving, which limits the number of hours they can work at jobs outside of the home.
Many people with disabilities and their families came into the pandemic having already used sick leave and vacation days for ongoing medical issues. When the schools closed, school-aged people with special needs lost their therapy and other supports. Their parents lost the ability to work because they had to take care of their children during the school day as well as all the other hours of the night and day.
The COVID-19 relief packages Congress passed in 2020 did not provide the assistance these families desperately need. The Arc noted that the emergency measure that Congress passed in March of 2020 only provided 10 days of emergency paid sick time and another 10 weeks of paid family leave.65 However, employers with more than 500 employees were exempt from the enhanced leave provisions.66 Furthermore, schools, day programs, and daycare centers did not reopen after 10 weeks. Parents needed paid leave until their children’s programs reopened.67
These families needed and deserved additional supports during the pandemic.
XI. People with Special Needs and Experts Weigh in on How the COVID-19 Pandemic Affected Their Lives
In addition to the themes discussed above, the interviews revealed some notable insights about what people with special needs and their families experienced during the COVID-19 pandemic.
The parent of the young man with cerebral palsy said that the father had to take an unpaid leave of absence from his job to care for his son because his wife has heart failure and the father is the only one who can lift the son. The father later got furloughed from his job and had to take early retirement, getting lower monthly benefits than if he could have waited a year for full retirement age.68
An adult on the autism spectrum, whose partner and young adult son are also on the spectrum, reported various levels of disruption to their lives from the pandemic lockdown. The young adult son struggled with change to his routine. The interview respondent’s partner continued to go to work, mainly to keep his routine. Wearing masks was difficult for the partner, who reads lips due to auditory processing disorder. All three individuals have medical conditions that put them at a high risk of inflammatory reactions. Because of those medical conditions, they already took some of the prescription drugs investigated early on for treating COVID-19. The son’s occupational therapy got canceled because of the pandemic.69
An adult with multiple significant medical conditions shared that he and his family followed the precautions recommended by the medical experts. They used masks, practiced physical and social distancing, and had only one person at a time (as opposed to the entire family) run necessary errands. It exasperated him that he observed so many people doing things that he saw as unsafe. His biggest fear was that someone in his family would catch COVID-19 because of others’ behaviors.70
A man nearly 60 years old, with a life-long condition of hydrocephalus, reported that he was able to get the medical supplies he needed, thanks to his sister who has helped him tirelessly for many years. He has had 32 surgeries and doubted that he would survive if he caught COVID-19. He expected the next few years to be difficult. It bothered him that the United States has far more than its share of positive cases and confirmed deaths.71
The mother of the teenaged daughter with Down syndrome and additional significant medical conditions reported that she and her daughter suffered immensely during the pandemic. The mother’s elderly father became ill and died during the pandemic.72 Both mother and daughter got pneumonia and had several hospitalizations.73 The mother reported physical, emotional, psychological, spiritual, and financial exhaustion.74 She felt fear and had issues with trust. She experienced an extreme decrease in her ability to self-care. She felt the burden of increased isolation. Because she was unable to get childcare or a respite caregiver, she had to work 24/7 to meet her daughter’s significant health issues. Remote learning was not appropriate for her daughter, so she had lost many months of learning. She was grateful for the additional time she and her daughter had together during the lockdown, and she knew that she did everything she could to keep her daughter safe. There were shortages of RN nursing care, but the mother was able to get all the medications the child needed.75 The mother went through a contentious divorce prior to the pandemic and co-parenting had been a struggle all along. The daughter’s father and mother did not agree about the measures necessary to ensure the child’s safety during the pandemic. This exposed the daughter to an unnecessary risk of illness and caused the mother great anxiety and stress.76
A therapist who works with disabled children and adults suggested that some developmentally disabled people who used to work but could not do so during the lockdown might not understand why they could not go to their jobs. Many do not have devices that can connect to the internet, so they do not have virtual supports. When a person with developmental disabilities loses their routine, it can affect them with far greater magnitude than most people. Because they have to rely on their home support providers for coaching, assistance with life skills, and transportation/supports for outings, they cannot fend for themselves. They are at the mercy of whatever programs continue to provide services. Those in group homes are at the same risk of contracting COVID-19 as people in nursing homes and other group settings. Many people with developmental disabilities have additional medical conditions that put them at a higher risk of catching and having a bad outcome from COVID-19.77
The international panel of experts (expert panel) referenced earlier discussed how the pandemic affected autistic adults and their families and caregivers.78
The expert panel offered these compelling comments:79
- People with special needs, their families, and caregivers need to maintain access to the services and supports they need.80
- Some people with autism might not be able to ask for help in a crisis or in an emergency. For example, they might find it challenging to seek assistance when in need of food or shelter, or when either they or family members or caregivers are sick with a life-threatening illness. We need to engage in emergency planning to anticipate these issues proactively and instill ongoing monitoring.81
- People with special needs are more vulnerable than ever when they are isolated from their outside supports. When they are dependent on someone who is toxic or abusive, they are unable to get breaks from that environment as they are unable to go to school or to adult day programs. They cannot reach out to others for help. Ultimately, they are trapped with those who might mistreat them.82
- Adults with disabilities have job insecurity, which is compounded by the increased costs of essential supplies. Utility bills can be higher because people who are ordinarily out of the house during the day are home all the time, which leads to an increase in resource usage.83
- In some areas with increased monitoring and contact tracing, people with special needs are more likely to have interactions with the police. As communication disabilities are common in the special needs community, which in turn may cause them to experience heightened concern about police conduct, some people on the autism spectrum may be afraid to go out to get prescriptions, groceries, or other necessities.84
- The durational uncertainty of the pandemic impacts people with autism more than the general population. Also, with so many new rules and restrictions, there is anxiety about whether they are doing things correctly.85
- Some people with autism may need a “quiet room,” or a space where they can be alone as desired, and have peace and quiet. When the house is full of siblings and parents all day because of the pandemic, a person with autism may not be able to get needed space and alone time.86
- Members of autism and disability communities need to take part in planning processes for future public health crises.87
In summary, the panel identified many challenges that people with special needs face at a heightened level as a result of the COVID-19 pandemic. They made recommendations about how to improve the situation, now and for the future. Also, they recognized that new opportunities for people with special needs were emerging because of the pandemic.88
The dramatic changes to the manner in which people go about their daily lives during the COVID-19 pandemic are unquestionably stressful. These stressors are magnified and exacerbated in the families of special needs children and adults. Now, more than ever, the family law community needs to adopt a position of patience: Patience with clients, patience with opposing counsel, and patience in court.
As with every other aspect of life during COVID, the divisiveness in custody and visitation issues is magnified. The family lawyer needs to understand this fact if their counsel is to be effective. The need to be a facilitator and mediator may be especially important during these times.
It is important for family law attorneys and judges to increase their awareness of the extreme hardships that people with special needs children, their families, and caregivers have experienced during the COVID-19 pandemic. Families have struggled with issues including getting access to therapy, dealing with a distance learning curriculum that does not address learning disabilities, family illnesses, loss of or insufficient income, limited access to technology, and simply not knowing who to turn to for help. The family law attorney needs to understand how these hardships have been magnified during the COVID-19 pandemic.
Federal support for the families of children with special needs was sorely overlooked in the 2020 federal relief package. The increased financial stress and marginalization by the government adds to an already stressed family life.
By understanding the hardships faced by these families, the family law attorney is able to serve their needs better. Helping the families reach resolutions of disputes between the parents can reduce the problems.
When a parent has a mental illness, this can add to the difficulty of the situation. Court-ordered evaluations and supervised visitation can be appropriate for parents who have mental illnesses, depending on the degree and severity of the mental illness.
Parenting concerns can take on a new and added dimension during the COVID-19 pandemic. Behaviors that were commonplace before could now be dangerous to the child’s health. For parents of children with special needs, there needs to be consistent and constant adherence to guidelines such as wearing masks, washing hands, and avoiding crowds, even when children are not with their parents. While the courts cannot restrict otherwise lawful behavior, they can craft orders that require adherence to the CDC’s COVID-19 health guidelines in order to continue custody or visitation.
The good news is that many agencies have mobilized for the better during the COVID-19 pandemic. There is a wide range of resources available for families with special needs children. As a family law attorney, you should familiarize yourself with the local and state resources available to your clients whose families include special needs children. The appendix includes more details on services and resources for children with disabilities and their families.
By having a better understanding of how the COVID-19 pandemic impacts families with special needs and understanding the options, both formal and informal, family law attorneys and judges can provide much needed support for these valued individuals and families.
1. Except as otherwise noted, the information in this Article is based on the interviews conducted by Margaret “Pegi” Price and on her experience. She has worked with the special needs community for nearly 30 years as an attorney, consultant, advocate, author, conference speaker, expert witness in family law cases involving children or adults with special needs, and autism therapist. Two members of her immediate family have special needs.
2. Margaret “Pegi” Price reached out to members of the special needs community through social media, then interviewed 10 families as well as therapists and special education teachers. The interviews took place by telephone calls, emails, and private messages. Unless otherwise indicated, the information in this Article is from that survey or based on the experience of the authors.
3. Claire M. Blackburn et al., Prevalence of Childhood Disability and the Characteristics and Circumstances of Disabled Children in the UK: Secondary Analysis of the Family Resources Survey, 10 BMC Pediatrics 21 (2010), https://bmcpediatr.biomedcentral.com/articles/10.1186/1471-2431-10-21.
4. See Ctr. on Reinventing Pub. Educ. (CRPE), How Much Have Students Missed Academically Because of the Pandemic? A Review of the Evidence to Date 4 (July 2021), https://www.crpe.org/sites/default/files/8_5_final_academic_impacts_report_2021.pdf.
5. See generally Lauren Morando Rhim & Sumeyra Ekin, Ctr. for Learner Equity, How Has the Pandemic Affected Students with Disabilities? A Review of the Evidence to Date (CRPE Aug. 2021), https://www.crpe.org/sites/default/files/final_swd_report_2021.pdf.
6. SSD Mission & Vision, Special Sch. Dist. St. Louis Cnty., https://www.ssdmo.org/Page/62 (last visited Mar. 4, 2021). The St. Louis County SSD has a challenging job to do, and they do it well. The son of one of the authors received services from the St. Louis County SSD from preschool through 12th grade. Those 15 years revealed caring, superhero special education teachers, therapists, and paraprofessionals and administrators who somehow got the job done without ever having enough financial resources.
7. Distance Learning Survey Results Summary, Special Sch. Dist. St. Louis Cnty., https://www.ssdmo.org/Page/1082 (last visited Mar. 4, 2021).
8. Karla Reichert & Matt Traughber, Special Sch. Dist. St. Louis Cnty., A Survey-Based Review of SSD’s Distance Learning During the COVID-19 Closure 1–2, https://docs.google.com/viewerng/viewer?url=https://www.ssdmo.org//cms/lib/MO50000617/Centricity/Domain/338/DLP_survey_summary.pdf.
11. SSD Fast Facts, Special Sch. Dist. St. Louis Cnty., https://www.ssdmo.org/Page/281 (last visited Mar. 4, 2021) [hereinafter SSD Fast Facts].
12. Special Sch. Dist. St. Louis Cnty., https://www.ssdmo.org/ssd_services/schools.html (last visited Mar. 4, 2021).
13. SSD Fast Facts, supra note 11.
14. Reichert & Traughber, supra note 8. Some of the issues encountered may have been experienced by all students, while other issues are specific to or presented greater challenges for students with disabilities.
15. Id. at 3.
21. Id. at 4.
22. Id. at 5.
25. Id. at 6.
34. Id. at 7.
35. Id. at 3.
41. Id. at 8.
43. Id. at 9–10.
44. Sarah A. Cassidy et al., An Expert Discussion on Autism in the COVID-19 Pandemic, 2 Autism in Adulthood 106 (2020), https://www.liebertpub.com/doi/pdf/10.1089/aut.2020.29013.sjc.
46. Id. at 112.
47. Interview of Individual #5 by M. Price on June 10, 2020.
48. Interview of Individual #6 by M. Price on July 1, 2020.
50. Valerie A. Canady, Mental Health Groups Providing Support, Education in Wake of COVID-19, 30 Mental Health Wkly., no. 11, Mar. 16, 2020, at 1–3, https://doi.org/10.1002/mhw.32272.
51. Telehealth: Delivering Care Safely During COVID-19, U.S. Dep’t Health & Hum. Servs., https://www.hhs.gov/coronavirus/telehealth/index.html.
53. Cassidy et al., supra note 44.
55. Id. at 5.
61. Id. at 11.
63. Peter Berns & Debra L. Ness, During a Crisis and Beyond, Congress Must Provide Paid Leave to Caregivers of People with Disabilities, The Arc (June 29, 2020), https://thearc.org/during-a-crisis-and-beyond-congress-must-provide-paid-leave-to-caregivers-of-people-with-disabilities/.
64. Blackburn et al., supra note 3.
66. Berns & Ness, supra note 63.
68. Interview of Individual #3 by M. Price on June 12, 2020.
69. Interview of Individual #1 by M. Price on June 10, 2020.
70. Interview of Individual #2 by M. Price on June 10, 2020.
71. Interview of Individual #4 by M. Price on June 10, 2020.
72. Interview of Individual #6 by M. Price on August 25, 2020.
73. Interview of Individual #6 by M. Price on September 4, 2020.
74. Interview of Individual #6 by M. Price on August 25, 2020.
75. Interview of Individual #6 by M. Price on June 29, 2020.
77. Interview of Individual #5 by M. Price on June 10, 2020.
78. Cassidy et al., supra note 44, at 106 nn.1–14.
79. The experts represented these universities and organizations: School of Psychology, University of Nottingham, Nottingham, U.K.; Autism in Adulthood, Portland, Or., U.S.; School of Social Work, Portland State University, Portland, Or., U.S.; Department of Medicine, Oregon Health and Science University, Portland, Or., U.S.; School of Public Health, Oregon Health and Science University, Portland, Or., U.S.; Portland State University, Portland, Or., U.S.; Autistica, London, U.K.; Thinking Person’s Guide to Autism, Redwood City, Cal., and Brooklyn, N.Y., U.S.; Division of General Internal Medicine and Health Service Research, David Geffen School of Medicine at UCLA, Los Angeles, Cal., U.S.; UCLA Center for Public Health and Disasters, Department of Community Health Sciences, UCLA Fielding School of Public Health, Los Angeles, Cal., U.S.; Autistic Women and Nonbinary Network, Washington, D.C., U.S.; Department of Psychology, University of Portsmouth, Portsmouth, U.K.; Office of Developmental Primary Care, Department of Family and Community Medicine, University of California San Francisco, San Francisco, Cal., U.S.; Department of Psychology and Mental Health, Population Health Sciences Institute, Newcastle University, Newcastle, U.K.; Sir James Spence Institute, Newcastle University, Newcastle, U.K.; Werklund School of Education, University of Calgary, Calgary, Can.
82. Cassidy et al., supra note 44, at 111.
85. Id. at 112.
87. Id. at 115.
Information on the Impact of COVID-19 on People with Special Needs and Their Families
Many organizations that work with special needs communities have created resources that provide guidance for people with special needs, their families, and caregivers. Information from several of these organizations is provided below; it can help you better understand how the COVID-19 pandemic has affected and continues to affect people with special needs and their families.
1. American Cancer Society
The American Cancer Society has provided information on:
- How a cancer patient can get routine medical care during the pandemic;
- Cancer screening during COVID-19;
- How the pandemic could affect cancer patients, their care, and cancer treatment;
- Why cancer patients could be at higher risk for catching COVID-19;
- How cancer patients can manage the risk of infection; and
- Symptoms to look for if a patient might have COVID-19. 1
2. American Lung Association
The American Lung Association created a COVID-19 Frequently Asked Questions (FAQs) page for lung disease patients. The webpage covers topics such as:
- what the coronavirus (COVID-19) is, in user-friendly terms;
- whether people with lung disease are more likely to catch COVID-19;
- the categories of people who are at a high risk of developing a severe (as opposed to mild or asymptomatic) form of COVID-19;
- the possibility of long-term lung damage from COVID-19; and
- how lung patients should handle routine, non-urgent doctor visits during COVID-19.2
3. Autism Society
The Autism Society (also called the Autism Society of America) created a COVID-19 toolkit3 that it posted on its website to give people with autism, their loved ones, and caregivers practical guides to help them through the COVID-19 pandemic. People with a wide variety of disabilities besides autism might find the toolkit useful.
The Autism Society toolkit covers these topics:
Mental Health & Respite
Sixty percent of the people who responded to an Autism Society poll on Facebook asked the Autism Society to include mental health tips and resources in the COVID-19 toolkit.4 Increased anxiety and uncertainty hit the autism community particularly hard, as many people with autism struggle with anxiety on a regular basis, even when there is no pandemic.
Some people on the autism spectrum need certainty and predictability more than neurotypical individuals. The unpredictability of the novel coronavirus disease and how it affects our lives makes it impossible for parents to predict for their children what to expect.
The Mental Health & Respite page of the Autism Society’s online toolkit provides:5
- mental health guidance from the U.S. Centers for Disease Control and Prevention, Mental Health Innovation Network, and World Health Organization;
- links to mindfulness and calming apps;
- tips on ways to stay connected and minimize social isolation and loneliness;
- suggestions on how to protect your mental health while social distancing;
- a guide for autistic adults to manage the daily tasks involved in self-quarantining and social distancing;
- pointers on how neurotypical people can help individuals with autism during times of uncertainty like this pandemic;
- ideas on how to reduce anxiety during COVID-19;
- a link to the Suicide Prevention Hotline;
- state-by-state links for respite programs to provide short term relief or breaks for exhausted caregivers;
- a link to the Family Caregiver hotline, which is a service that the AARP maintains to give support to caregivers of people with disabilities; and
- advice for caregivers who may become quarantined because of COVID-19 on how their provider agencies can offer emergency support. A disabled individual with self-directed support can arrange for alternative staff to cover for them by coordinating with their Support Broker.
One hallmark of many people with disabilities is the difficulty that unexpected or expected changes in one’s schedule can cause. For example, when a child with autism sleeps at one parent’s house one or two nights a week after a divorce, the transition from his routine of sleeping in his own bed at his long-term home can cause him extreme stress and anxiety.
The Autism Society offers these suggestions for parents to help their children with special needs cope with and adjust to the changes that COVID-19 imposed on everyone’s schedule.
- Social stories can help children understand, through the use of visual aids, what is going on with respect to the pandemic. A social story is similar to a children’s story book. The parent can use pictures and words to create a story about the challenging topic. The Autism Society provides sample social stories and comic strip conversations6 so that parents do not have to invent their own.
- Create a new schedule for your child to lend some predictability in these unusual times. Create a visual schedule, using timetables, charts, and clocks, so that children will know what will happen at what time.
- Lower your expectations. Everyday tasks will take longer because of the pandemic and heightened stress levels. Allow extra time for essential tasks and place nonessential things on the back burner for now.
- Reward your child for being flexible.
- Make decompression or calm-down actions part of the daily routine.
Many adults in the special needs community, and families with special needs, are struggling financially because of the pandemic, shutdowns, and job losses. The Lifestyle Supports page of the Autism Society toolkit7 provides information for people on the following ways of replacing lost wages, finding community living resources, and obtaining adequate food supplies.
1. Lost Wages
- disability insurance
- paid family leave
- the Families First Coronavirus Response Act
- unemployment assistance
2. Community Living Resources
- HHS Administration for Community Living
- guidance on how to prevent the spread of COVID-19 in nursing homes, group homes, and residential communities
- Self-Advocate Guide to COVID-19
- financial assistance for emergency childcare
- housing resources for people with disabilities
- daily coping and living guidance from the CDC
- how to make workplaces safe during the pandemic
3. Food and Nutrition
- links to food banks and food pantries
- Supplemental Nutrition Assistance Program (SNAP)
The Education page of the Autism Society toolkit8 provides extensive resources to help families adjust to long-term school closures. The toolkit also contains information for school administrators to use when adapting educational services and therapies from in-person to online for learners with special needs.
The Public Policy page of the Autism Society COVID-19 toolkit provides links to the existing and proposed legislation9 about COVID-19 financial relief, with a brief summary for each act. This section of the toolkit contains extensive policy resources for people who do advocacy work concerning the disabled community, either as a parent or a concerned citizen.
Facebook Live: A Coronavirus Information Series
The Autism Society provides ongoing, weekly information about COVID-19 topics in the form of videos posted on Facebook Live. You can see past videos on its website.10
COVID-19 Social Stories
The Autism Society of America, in collaboration with self-advocates and leading autism experts, created a collection of downloadable social stories that families and caregivers can use to explain the current situation to people on the autism spectrum.11
The COVID-19 toolkit includes resources that people in the autism community can use to access more information about the disease and the vaccine.12 These resources include facts about COVID-19 testing, how the disease spreads, preparing your child with autism for a hospital visit during the pandemic, health emergencies, and what to do when you lose your health insurance.
Recursos en Español (Resources in Spanish)
The Autism Society provides Spanish-language resources about COVID-19 for people in the autism community.13
1. Coronavirus, COVID-19, and Cancer, Am. Cancer Soc’y, https://www.cancer.org/about-us/what-we-do/coronavirus-COVID-19-and-cancer.html (last visited Oct. 1, 2021).
2. Lung Health & COVID-19, Am. Lung Ass’n, https://www.lung.org/lung-health-diseases/lung-disease-lookup/COVID-19/faq (last visited Oct. 1, 2021).
3. COVID-19 Toolkit, Autism Soc’y, https://www.autism-society.org/wp-content/uploads/2020/07/State-Advocacy-Toolkit-JULY27.pdf (last visited Oct. 1, 2021).
4. COVID-19 Mental Health & Respite, Autism Soc’y, https://www.autism-society.org/covid-mental-health-respite/ (last visited Oct. 1, 2021).
6. Social Stories and Comic Strip Conversations, Autism Soc’y, https://www.autism.org.uk/advice-and-guidance/topics/communication/communication-tools/social-stories-and-comic-strip-coversations (last visited Oct. 1, 2021).
7. COVID-19 Lifestyle Supports, Autism Soc’y, https://www.autism-society.org/covid-lifestyle-supports/ (last visited Oct. 1, 2021).
8. COVID-19 Education, Autism Soc’y, https://www.autism-society.org/covid-education/ (last visited Oct. 1, 2021).
9. COVID-19 Public Policy, Autism Soc’y, https://www.autism-society.org/covid-public-policy/ (last visited Oct. 1, 2021).
10. Facebook Live Coronavirus Information Series, Autism Soc’y, https://www.autism-society.org/facebook-live-coronavirus-information-series/ (last visited Oct. 1, 2021).
11. Download COVID-19 Social Stories to Explain Changes, Nat’l Autism Soc’y, https://www.covid19.autism-society.org/ (last visited Oct. 1, 2021).
12. COVID-19 Healthcare Organizations, Autism Soc’y, https://www.autism-society.org/covid-healthcare-organizations/ (last visited Oct. 1, 2021).
13. COVID-19 Recursos en Español, Autism Soc’y, https://www.autism-society.org/covid-spanish-resources/ (last visited Oct. 1, 2021).