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Texas COVID Stories

1 year after Initial shutdown

 

In their Texas COVID Stories, self-advocates, family members, and service providers shared the impact they have felt from COVID-19 in the last 12 months. The selection of stories below covers topics such as mental health, workplace safety, and accessing special education services through virtual learning. They also shared plans for the upcoming months.


 

Social Anxiety Worsened

How has the COVID-19 situation impacted you or your family?
I have seen an uptick in my anxiety symptoms, due to fears of my family members who are immunocompromised. There has been a lot of additional stress as an advocate, as well, as so many consumers have been dealing with heightened food insecurity, lack of access to health care, and increases in individuals who are at risk of homelessness.

I have been avoiding using public transportation as much as possible so as not to potentially contract COVID-19 and bring it home to my grandparents. At the same time, I am now reliant on loved ones for rides to doctor appointments and to run errands, which dips into my ability to be independent within my community.

Has your experience changed in the past six months?
I have taken steps to take walks around the neighborhood daily to improve physical health. This has been a great benefit. My health care access fluctuates. I was able to get telehealth in 2020, but my providers no longer offer this, which is challenging. I have been on a waitlist for counseling/therapy for months now — this is disheartening. I find my social anxiety has worsened considerably.


Self-advocate from League City

 

 

Masks Impacting Communication

How has COVID-19 impacted you or your family?
People wearing masks keeps me from understanding what is being said. It is especially difficult since I’m hard of hearing. Even wearing hearing aids it is still nearly impossible for me to understand what is being said. … Getting access to vaccines has been very frustrating as I’m not 65 or older nor do I have any comorbidity health issues.

Has your experience changed in the past six months?
Church attendance has changed for the better. I have been able to visit my girlfriend more often now. Shopping has, by and large, been better. Mask wearing is still a huge problem for me.


Self-advocate, location not provided

 

 

Hope After Receiving Vaccine

How has the COVID-19 situation impacted you or your family?
I am the mother of two young people with disabilities, and we have been in lockdown for a year with only strictly necessary outings and visits required by the primary physician. We were very worried, anxious, and depressed until we were able to access the vaccine. We received the two doses of the Moderna vaccine, and my children did not suffer any strong side effects. We can already say that we have a weight off our shoulders but will take us time to regain our trust in the outside world. I hope this situation does not happen again or that we prepare ourselves to live it differently, being more responsible and taking better care of people that are vulnerable so they can all have a life without so much stress and more dignified for every human being.

Has your experience changed in the past six months?
Since receiving the vaccine, [our experience has been] better.


Family member from El Paso

 

 

Special Education Teacher’s Perspective

How has the COVID-19 situation impacted you or your family?
[COVID-19] has brought about some anxiety. I want to support families, but everyone has their own set of circumstances and it’s hard to know how to do that.

Has your experience changed in the past six months?
For many families of students with disabilities, attending in-person school is a “catch 22.” They know their students are more medically volatile and hesitate to send them to school. At the same time, the students don’t get ample opportunities with remote learning. Many of the therapies and services provided through special education just don’t work in an online format. 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.


Special education teacher from Keller

 

 

Son Missing Community Support

How has the COVID-19 situation impacted you or your family?
Our son is 37 and non-verbal. Prior to COVID-19, we worked hard to build a life for him to include many supports and services he could access in the community. Services like recreation therapy, music therapy, assistive speech technology, and vocational training at dayhab. He volunteered at two separate food pantries and was a valued member of his worshipping community. It all came to a crashing halt, and he was not allowed to leave his group home even to take a ride in the car. His mental health has suffered the most. He repeatedly tells us through FaceTime he is sad, mad, and frustrated. My heart breaks for him.

Has your experience changed in the past six months?
The restrictions eased somewhat, allowing him to visit our home once a week. Dayhab and therapies opened, but without his advocates having access to observe, the quality of those services decreased. The service coordinator does not have access to him and must rely on the provider sharing information. “He is fine” is all they share. I repeatedly ask for information and I don’t get much.


Family member from League City

 

 

Experiencing Social Discrimination

How has COVID-19 impacted you or your family?
The biggest issue is social discrimination regarding masks vs. face shields. I was asked to leave two well-established businesses because I chose to wear a face shield. Under ADA law it states, “when a person with a disability is unable to wear a mask due to breathing complications or speech difficulties, a face shield can provide some level of protection.” I was later compensated by both businesses by either alternative services or being allowed to wear the face shield while visiting the establishments.

Has your experience changed in the past six months?
Things are beginning to improve, but there is still discrimination among some local businesses.

Self-advocate from Denton

 

 

Husband Lost to COVID-19

How has the COVID-19 situation impacted you or your family?
I lost my husband in July to COVID-19.

Has your experience changed in the past six months?
Having issues adjusting to the new “norm.”


Self-advocate and family member from Corpus Christi

 

 

Access to Medication Delayed

How has COVID-19 impacted you or your family?
The toll on my young kids has been horrible. We were flooded when Harvey hit a few years ago, and I thought that was bad. But this entire pandemic has given two of my three kids anxiety, including one who has developed a severe rash that breaks out when she gets really anxious. How do I tell my kids that this is not the norm and they shouldn’t expect life to be like this always? Or will they? Is this the new norm? If it is, then I am even more afraid for the future.

Has your experience changed in the past six months?
Our mail-order medicine has been delayed or not provided due to COVID-19. It’s harder getting an in-person medical appointment. As a person with a profound hearing loss, I need to be able to read lips for optimal communication and trying to do virtual televisits from a medical professional doesn’t cut it.


Self-advocate from Katy

 

 

Fewer Medical Equipment Providers

How has COVID-19 impacted you or your family?
The silent crisis is mass closings of durable medical equipment (DME) providers in Texas.

Recently, the real wheel of my Quicki2 broke. I’m an above-the-knee amputee in a wheelchair full-time. I called my health insurance four times in one day to get additional names and numbers of DME providers. The approved provider list is not long. I expanded my search to try and find any other DME provider. I made 82 phone calls seeking help. More than 60-65% have gone out of business due to the COVID-19 shut down. The remainder only provided specialty care for respiratory, diabetes, wound care, etc. If they provided wheelchairs, they are the 40-pound hospital grade wheelchairs and nothing else.

Out of the 82 calls, only two companies carried the lightweight wheelchairs. I called my insurance company again and relayed my findings. … To get a new chair because of COVID-19, it is going to take six to eight weeks to get my chair from the factory, and that is after an evaluation appointment.

Has your experience changed in the past six months?
Everything costs more! From food, fuel, to utilities. Lumber prices have soared since last summer. Gas prices have doubled in my area. The very worst part of this pandemic is not being able to see my grand-babies. That is heart-crushing.

Self-advocate from Chalk Hill

 

 

Medication, Vaccine

How has COVID-19 impacted you or your family?
My child with a disability is 15 and I do not know if she qualifies for the vaccine. I have received no information. I worry about her getting the virus because she does not communicate, and I don’t know how I will know to take her to the hospital. I have also run into issues getting her medication. She needs these medications badly and her Medicaid has decided not to pay for [them] this year until we meet our $5,000 deductible with our other insurance. I don’t know if the medication problem is related to COVID-19 or not. As far as socialization, school extracurricular things are shut down — no dances or Special Olympics right now. I am so happy that Denton ISD opened its self-contained classrooms, so I am not worried about instruction and she gets services at school. I do worry that she will get the virus at school and has already been sent home for 10 days because of exposure.

Has your experience changed in the past six months?
I would say things are about the same, except as the vaccine becomes more widespread, I am getting a little anxious because I want her to get one and I don’t know how or if she can get one at her age.


Family member from Corith

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