| Online Support Has LimitsHow has the COVID-19 situation impacted you or your family?
My son has Asperger’s. We have opted for online school, but he is in an 18-plus program for job skills and life skills. So far in this program we have not had any success, and this is his last year of eligibility because he turns 22 in February 2021. Not being able to gain any skills in a real job situation because of the pandemic concerns me. If he can’t get a job to help support himself what will happen to him when his dad and I aren’t here? Online options may work for others but I don’t see how we can get the support and skills he needs via online and he will not go to the school because of his fear. I can’t force him, and I won’t. I don’t think opening schools is a safe thing to do.
What steps do you plan to take during the next six months?
We don’t go out in public unless we have to. We wear masks, carry hand sanitizer and social distance. I pray my husband doesn’t get exposed again as he is considered an essential worker. Family member from Fort Worth |
| Behaviors Are RegressingHow has the COVID-19 situation impacted you or your family?
I am the parent of a 19-year-old son with IDD, autism, vision and hearing impairments. He also is unable to speak and communicates by signs and gestures. He was attending an adult program provided by his school district; however, he has been at home since March. He is limited to where he can go with us because he will not wear a mask; he is sensitive to material and he takes it off. He has regressed tremendously, and his attitude has changed. 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. Although we do go outside on the back porch and take small walks, that does not provide him the ability to be among his friends, other family members, and school. He was very active prior to COVID-19 and keeping him at the same activity level at home has been challenging. It saddens me to see him deteriorate slowly.
What steps do you plan to take during the next six months?
He is returning to school when it opens. I believe going back to school and his old routine will change his attitude. We will start with that. As time goes on, we will start going to church, see our family more often and do our community activities.
Family member from Humble |
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Worried About Work SafetyHow has the COVID-19 situation impacted you or your family?
My husband and I are both high-risk, but I have additional risks, having recently completed several rounds of chemotherapy. We both work with the school system and have jobs that usually require high volume interaction with youth and adults, not only from one district, but many districts and counties in the region. The current environment has allowed us to remain safe, but returning to work settings are imminent, as we worry for each other’s safety.
What steps do you plan to take during the next six months?
Practice social distancing, wear a mask, wear a face shield, wash hands, and take it day by day. Worries have been debilitating at times, so practicing stress-relieving techniques have helped.
Self-advocate from Corpus Christi |
| Trouble Accessing AttendantsHow has the COVID-19 situation impacted you or your family?
I am the parent of a young adult with direct support needs for all activities of daily living. We cannot use a majority of our habilitation trainings and respite hours due to COVID-19. We were short-staffed before COVID and were reaching out to hire additional attendants when things shut down. Now we, as nonpaid parents, are covering a greater share of attendant duties. We are fortunate that we have two attendants who we feel comfortable coming to our home since they both follow Centers for Disease Control and Prevention guidelines and local guidelines to self-isolate when outside of our home.
What steps do you plan to take during the next six months?
That is a challenge. One of my workers will be returning to her daytime position as a preschool teacher in a private school. We have to weigh the risk of how that will work. We still will not likely hire anyone at this time since the risk could be too great. Family member from Dallas |
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Trouble With Online LearningHow has the COVID-19 situation impacted you or your family?
I have a profound hearing loss. Very little is captioned for my son with a hearing loss or for me to help my kids (with virtual schooling). I can see the other moms, and some dads, sitting next to their child and I’m having to ask my kids to interpret for me. I can’t even assist my youngest who is on the spectrum. I am smart, educated, and have been doing a great job teaching my kids over the virtual platform. But I can’t help them when I can’t hear. COVID-19 has made my already difficult world even more difficult with respect to equal access to communication.
What steps do you plan to take during the next six months?
One day at a time. Wake up and get the kids ready for school; stay home as much as possible or social distance appropriately in public and wear masks; sanitize as much as possible; and pray. Self-advocate and family member from Katy |
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Isolated in Group HomeHow has the COVID-19 situation impacted you or your family?
Since there is no day program, I am isolated in my group home. The other guys are sedentary, but I need to move to help calm my behavior. My mom takes me out several days a week, and another caregiver takes me out several days a week.
What steps do you plan to take during the next six months?
I hope my mom can continue to take me out as well as the privately paid caregiver. Self-advocate from Austin |
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Shortage of ServicesHow has the COVID-19 situation impacted you or your family?
I am a social worker so I will answer this question to reflect my clients: There is a drastic, alarming shortage of respite care, day care, and behavioral services due to COVID-19.
What steps do you plan to take during the next six months?
Families are accessing basic needs services, and Dallas has promoted these locations. There is difficulty in providing respite in home services and agency respite services, and there are testing and evaluation barriers, access barriers, and provider barriers. These families are in crisis. Social worker from Dallas |
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IEPs Not Being MetHow has the COVID-19 situation impacted you or your family?
I have had to take leave from my job to do online learning with my children. I have two children that have individualized education programs (IEPs), and online learning for them is not beneficial. It’s a fight to keep them on the computer and engaged. One of my children, who is 6 and autistic, is essentially on the computer with live classes all day long. This is hindering his ability to learn and he can’t sit still for the meetings. His IEPs aren’t being met without in-person learning.
What steps do you plan to take during the next six months?
My children need in-person learning at a school. Family member from Dripping Springs |
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Difficulties With COVID Care
How has the COVID-19 situation impacted you or your family?
It has been challenging to work at home while still providing quality care to our daughter. She requires a lot of attention and activities. We are relying on our other children to care for her and paying them. Our provider is paying a pittance for in-home dayhab.
What steps do you plan to take during the next six months?
Please advocate for legislative action to assist families that care for disabled individuals, such as tax breaks. We should also see a rate increase for foster care and in-home dayhab. Many Home and Community-based Services providers are keeping a majority of what is paid by the Texas Health and Human Services Commission for waiver programs. Family member from Katy |
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Managing Life AdjustmentsHow has the COVID-19 situation impacted you or your family?
Friends have been helping with grocery shopping, cleaning and other minor chores. I have been trying to keep a routine and connect with loved ones electronically. I am retired and receive retirement income, so gratefully, this is not an issue for me. I have been able to get my medications through a drive-thru. It has been challenging, but luckily, I have been able to manage.
What steps do you plan to take during the next six months?
I plan to vote by mail and all other plans remain the same. Self-advocate from District 4 |
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Difficulty Accessing ServicesHow has the COVID-19 situation impacted you or your family?
As a counselor working with individuals with disabilities, we have seen decrease of employment services. Individuals are afraid to leave their houses to even attend doctor appointments. Many of my customers had rescheduled doctor appointment during this time, which risks our customers having more medical problems. Due to having limited income or being a breadwinner of the family, many of the family members of people with disability are risking their lives to leave the house. Many of our customers do not have access to the internet. Some individuals’ parents don’t speak English. Having everything online has been very difficult for many people to receive services or access virtual services.
What steps do you plan to take during the next six months?
As a counselor, I will continue to provide services as much as I can. I will continue to provide resources to individuals as much as I can. Vocational rehabilitation counselor, no location given |
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Widespread Life DisruptionsHow has the COVID-19 situation impacted you or your family?
We have been sheltered in since March 2020. Being visually challenged, I can no longer drive. Wearing a mask and using a cane to get around is very challenging. I no longer use public transportation as I have seen over the years the lack of cleanliness in public areas. I do not use public facilities. I do not eat in restaurants or visit stores, except for the grocery store or hardware store. I have had to cancel my eye doctor appointments five times already. In the last months I have had to have two telephone appointments with doctors for medical problems that came up. I have to pay higher medical costs for delivery of medications. I have to pay higher grocery bills for deliveries of groceries. Stores have shortages of items needed to keep us safe, and I cannot visit any family. My husband caught the virus and was sick for three weeks. The lack of information on this health issue is a problem.
What steps do you plan to take during the next six months?
Sadly to say, continue sheltering in as much as possible. I use what technology I have to keep myself informed. I will need to find a safe way to vote this year.
Self-advocate from Brownsville |
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Hard To Get Health CareHow has the COVID-19 situation impacted you or your family?
As a result of the COVID-19, we are having to wait more than a month for a visit or important testing. Not all medical visits can be virtual. Virtual therapies are very much time consuming and I have more than one child with special needs. I don’t think I’m qualified to give therapies by myself all the time. Also, private-duty nursing has been very difficult to obtain. A lot of nurses prefer to work at hospitals with higher pay than to expose themselves at a home for a fraction of the money. Seems to me that no one is thinking about the community that receives medical care at home. No protocols have been established to protect the vulnerable at home. No one seems to care about the caregivers and the problems and issues we have at home since COVID-19. Some of us cannot leave our house to do grocery shopping or take advantage of the donations if we have to go and get it.
What steps do you plan to take during the next six months?
Continue to do online grocery shopping and delivery. Continue to advocate for in-person therapy at my school. Keep monitoring my family’s symptoms. Keep myself informed. Family member from Arlington |
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Need Accommodations in HospitalHow has the COVID-19 situation impacted you or your family?
My brother with Down syndrome is 22 years old and got COVID-19 in July. He had to be admitted to the hospital. While at the hospital I had gotten permission to stay with him because he is nonverbal and then two days later hospital staff asked me to leave because of a miscommunication that I was not supposed to be there. I stood my ground and fully explained why my brother needed me there. He was going to get discharged without the oxygen that he needed but I advocated for him and spoke to the doctor that was discharging him. Thankfully they allowed me to stay. The second time I took my brother to the hospital they made accommodations for me and the hospital administration gave me permission to be there with my brother in the COVID unit as long as I followed all protocols. My brother is doing a lot better now and at home still recovering. I am very concerned for all of the other individuals with a disability that have to be alone when hospitals are not allowing anyone other than the patient in the COVID unit. In my brother’s case, he’s nonverbal and had never been in the hospital. It was very difficult for him to adapt to the hospital environment. 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.
What steps do you plan to take during the next six months?
Limit the times we go out to the grocery store, and limit the people that come to my house. Since my brother had COVID there is always a possibility he could get it again, so we’re not taking him out if it’s not necessary. We are disinfecting a lot more. Family member from Alton |
