Over the last year, the COVID-19 pandemic has impacted all aspects of life in our homes and communities. When Texas enacted initial state shutdowns in March 2020, the Texas Council for Developmental Disabilities (TCDD) took immediate initiative to better understand how people with disabilities and their family members were affected by the pandemic.

In the spring and summer of 2020, we conducted two surveys to learn the immediate and ongoing effects of state shutdowns, school and workplace changes, social distancing, and other disruptions to daily life. In spring 2021, we conducted a third survey to learn how Texans with disabilities continue to be affected by the pandemic one year after initial closures. All three surveys were distributed through TCDD’s communications channels, including email, website, and social media, and shared with partners and the media through outreach. Surveys were available in English and Spanish and could be completed online or over the phone.

In their Texas COVID Stories, people with disabilities (self-advocates), family members, and service providers shared their experiences during the pandemic. They recommended ways to improve access to services and supports for people with disabilities.  A range of 90-135 Texans responded to the three surveys. Their stories reflect a snapshot of how people with disabilities have experienced disruptions in their day-to-day lives over time. We have analyzed the responses from all three surveys to reflect on what has improved over the past year, what has worsened, and what our state can do to provide ongoing supports and services to all Texans with disabilities.

Access to Basic Needs

In April 2020, 66% of survey respondents reported that their access to basic needs had been changed or disrupted. “For a while access to food and groceries was a concern due to not being able to go the store and the long wait times for deliveries,” a self-advocate from Austin stated. One year later, access to basic needs had improved, with only 34% of respondents stating their access to food and groceries in April 2021 had worsened.

Still, this percentage reflects that about one-third of respondents are experiencing barriers to basic needs such as food. Issues impacting this number may include transportation and fear of contracting the virus at public locations such as grocery stores. A self-advocate living in League City shared, “When I am in a store and see individuals not wearing masks, my anxiety spikes sharply.”

Special Education Services

All Texas students were affected by state shutdowns as they transitioned from in-classroom to online learning environments. This transition especially impacted students who receive special education services. TCDD received multiple stories from families who expressed concern that their child was not able to effectively reach their individualized education program goals through virtual learning. Additionally, they feared that returning to classroom settings would put their child at risk of contracting COVID-19. “Many of the therapies and services provided through special education just don’t work in an online format,” a special education teacher from Keller shared. “Parents hesitate to invite service providers to their homes because they never know what kind of safety precautions that person has taken. Schools hesitate to send providers to homes because they don’t know if liabilities could come about as a result.”

Health Care and Therapies

Many Texans with disabilities and their family members rely on access to home and community-based health care and therapy services. During initial state shutdowns, people’s day-to-day lives were greatly impacted by not being able to visit their doctors’ offices. They suddenly did not have access to vital services such as physical, occupational, behavioral, and speech therapies. In April 2020, the majority of survey respondents (70%) cited disruption to their health care access and access to direct support professionals. Throughout the year, this access gradually improved, though about 44% of respondents reported worsened access to health care a year later.

The charts below show the trends of survey responses regarding health care and therapy access from April 2020 to April 2021.

Getting to providers is not the only issue at hand. Multiple survey participants shared difficulties accessing insurance coverage, especially when receiving telehealth services. “My child was getting five hours of speech, feeding, and physical therapy. We started telehealth, but our insurance denied it,” a family member from Flower Mound wrote. “Now our therapy company is asking for payment and if we don’t pay, we will not only be sent to collections but also will no longer be able to get services when this is over.”

The COVID-19 pandemic has also surfaced fears regarding support for people with disabilities in hospital settings. Initial pandemic protocols barred hospital patients from bringing a companion into their rooms. This posed an issue for Texans with disabilities who require an advocate to help assist them with tasks such as communication. A family member shared her experience when her brother was admitted to the hospital with COVID-19, “While at the hospital I had gotten permission to stay with [my brother] because he is nonverbal. Two days later hospital staff asked me to leave because of a miscommunication that I was not supposed to be there,” she said. “I wish there was some type of modification to the rights of the disabled, so they’re allowed to have a loved one or guardian with them in the room.” In April 2021, 69% of survey respondents stated they were concerned that health care for people with disabilities may not be a priority in certain medical settings.

Vaccines

In the most recent COVID Stories survey, respondents were asked questions regarding their access to and experiences with the COVID-19 vaccine. As of April 2021, 44% of respondents said they have received both doses of the vaccine. 42% of respondents received the first dose of the vaccine, but not the second. Access to the vaccine and a lack of communication about vaccine eligibility has been a challenge for many Texans. 42% of our survey respondents stated they had experienced barriers to receiving the COVID-19 vaccine. TCDD has developed vaccine accessibility considerations for vaccine coordinators and medical professionals.

The Impact of Isolation

From the start of statewide shutdowns to recent months, Texans with disabilities and their family members have been impacted by isolation and the inability to spend time with loved ones in their communities. In the summer of 2020, 93% of survey respondents said their social engagement has worsened. Similarly, in April 2021, 71% of respondents stated they remain concerned about the impacts of social isolation.

It is important to note that the experience of isolation was not specific to people with disabilities in 2020. Across the nation, people from all backgrounds experienced the negative effects of not being able to live their usual social lives. However, the impacts of isolation can look far different for a person with a disability. “[My son] has regressed tremendously, and his attitude has changed,” a parent of a son with disabilities wrote, “His behavior has changed to being angry, throwing things, banging his head, and doing things that may hurt himself or others. My son stopped doing such behaviors since the age of 6. He is just not happy.” Similarly, a self-advocate stated, “I find my social anxiety has worsened considerably.”

In Conclusion

The COVID-19 pandemic has greatly impacted the lives of all Texans, and especially those with disabilities and their family members. Over the past year, responses to TCDD’s Texas COVID Stories surveys indicate that gaps in access to necessary supports and services can be further exasperated during statewide emergencies. While access to needs such as health care and education seem better over the past year, responses suggest that many services have not fully recovered to pre-COVID-19 standards. TCDD will continue monitoring how the pandemic is affecting people with disabilities and will partner with state leaders to ensure all Texans with disabilities who want one will have access to the vaccine. To learn more about resources in your area and our other COVID-19 initiatives, please see TCDD’s resources page.