COVID, Vaccine and Disability Frequently Asked Questions
Below is a collection of frequently asked questions (FAQs) received by the TN Council on Developmental Disabilities about the impact of the COVID-19 pandemic on people with disabilities and their families, ordered by date we released them on social media (beginning in April 2020 at the bottom of the page - more recent questions are at the top). Some of the older information may no longer be the most current, as policies have changed throughout the past 4 months. Subscribe to our weekly disability policy newsletter for the most up to date information.
Q: Are there side effects from getting the COVID vaccine?
A: For some people, yes. Your body may feel different after the shot. This is called having side effects. You may get a headache, be tired or have a slight fever or chills for a few days. Your arm may feel sore or itchy where you got the shot.
These side effects should go away in a few days. They are a normal sign that your body is learning to protect you from COVID-19. If you are worried, call your doctor and talk with them. Learn more from the CDC about what to expect after your vaccine here.
Q: Where do I get the COVID vaccine? (Feb. 2, 2021)
A: Contact your local health dept. to find out where the vaccine is being given in your area. The TN Dept. of Health also just announced 100+ new vaccine locations, many in rural & underserved areas. You can read about this effort and find the new locations here.
Q: How can I make sure my health department knows that I am eligible for the vaccine? (Jan. 28, 2021)
A: The Council has worked with the Tennessee Department of Health and the Tennessee Department of Intellectual and Developmental Disabilities to create one-page flyers explaining vaccine priority for the following groups:
- People with intellectual and developmental disabilities (Phase 1a1)
- Home Care Workers / Direct Support Professionals (Phase 1a1)
- Caregivers of Medically Fragile Children (Phase 1c)
You can bring these documents to your local health department to help explain eligibility. If you have issues getting the vaccine, contact DIDD.Covid19@tn.gov.
Learn what phase your county is vaccinating at https://covid19.tn.gov/covid.../county-vaccine-information/.
Q: What if I receive the vaccine but others in my household do not? (Jan. 26, 2021)
A: Health officials say to use the same safety measures as before the vaccine: wear a mask, wash your hands, and physically distance from anyone who has not been vaccinated. See page 2 of the TN Dept. of Health FAQ document: https://www.tn.gov/.../novel.../COVID-19_Vaccine_FAQ.pdf
Q: Do I get priority for the vaccine if I am a caregiver? [Jan. 22, 2021]
Yes. As of Jan. 22, Priority Phase 1c includes household residents and caregivers of children younger than 16 years old who are medically fragile. These children include:
- those who are techonologically-dependent (such as those who are ventilator-dependent, oxygen-dependent, with tracheostomy, wheelchair bound due to high-risk medical condition, or require tube feedings, parenteral nutrition, or dialysis);
- those with immunocompromising conditions (such as those receiving chemotherapy, requiring daily oral steroids or other immunosuppressant medications, requiring medication to control diabetes, those with HIV/AIDS or other diagnosed high-risk immunodeficiency);
- those with complex congenital heart disease requiring ongoing medical management (such as Tetralogy of Fallot, hypoplastic left heart syndrome, and double outlet right ventricle), and
- those who qualify for the Katie Beckett waiver.
Q: How will I know when to get my second shot? [Jan. 21, 2021]
A: When you get your first dose of the vaccine, you will get a card with the date to come back & get your second shot. Read more info on the TN Dept. of Health's Vaccine FAQ page 1.
Q: What can I do if I have problems getting the vaccine? (Jan. 19, 2021)
A: A new resource sent to all local health departments over the weekend helps explain that people with intellectual and developmental disabilities are eligible for the vaccine in phase 1a1 in Tennessee. Download the document and bring it with you when you get the vaccine.
Q: If I tested positive for COVID-19 in the past, do I need to get the vaccine? (Jan. 15, 2021)
A: Yes, but it is not urgent because you have antibodies protecting you from getting it again. No one knows how long those antibodies protect you. The TN Dept. of Health recommends you wait to get the vaccine in order to allow those who are more high-risk to be vaccinated first. See page 1 of the TN Dept. of Health FAQ document.
Q: How can I help someone who is trying to make a decision about the vaccine? (Jan. 13, 2021)
A: The Council created a plain language overview of the vaccine to help people make informed decisions.
Every person - including people with intellectual and developmental disabilities - has the right to make an informed decision and give consent for the vaccine, if they choose. The only exception is if a court has given the legal authority for medical decisions to another person - often called a guardian or conservator.
For everyone, making a decision about the vaccine is personal. Talk to your doctor about your unique conditions and risk factors. Supporters can help a person with a disability by talking about the facts, allowing the person time to process information, and honoring their decision.
Q: What can I do if I think I am eligible for the vaccine right now, but am being turned away? (Jan. 11, 2021)
A: If you believe you are eligible for 1a1 (the first priority group) but have not been able to get the vaccine, state officials recommend: contact the director of your Local and Regional Health Departments . You can also file a complaint with your local health department.
(If you don't know when you are eligible to get the vaccine, use this new tool.
Q: How do I know when I or my family members can get the vaccine? (Jan. 7, 2021)
A: A new online tool lets people in Tennessee see when they will be able to get a COVID-19 vaccine. The tool also shows the timeline for the different phases of the vaccine in your local county: https://covid19.tn.gov/covid-19-vaccines/vaccine-phases/.
Q: I have a developmental disability. When can I get the COVID-19 vaccine? (Jan. 5, 2021)
A: In Tennessee, the first priority group, called group 1a1, includes adults with intellectual and developmental disabilities. Read more on page 14 of the Tennessee Distribution Plan.
Q: What's the best way to escalate issues with my child's education, if I need to, as school reopens? (Aug. 5, 2020)
A: Several parents have asked the same question. Here is an easy step-by-step guide for escalating issues through the formal education system, if you need to: https://fespedtn.blogspot.com/2020/06/since-shortly-after-schools-closed-in.html.
You can also get one-on-one help from STEP-TN (Support and Training for Exceptional Parents), The Arc TN's Family Engagement in Special Education teams across the state, and legal help from Disability Rights Tennessee.
Q: I'm overwhelmed with how to prepare for school reopening. Where can I turn? (July 31, 2020)
A: You are far from alone. In response to families in your same situation across Tennessee, we helped contribute to a step-by-step guide for parents created by STEP Tennessee.
Q: I am a caregiver. I know I need respite (a break from caring for my loved one), but I'm nervous about exposure to COVID-19. How can I assess safety and risk? (July 24, 2020)
A: Great question, and we know a LOT of Tennesseans are in the same situation. The National Respite Network and Resource Center published a Family Decision Guide to help. There are also other resources and a respite organization guide at this link.
Contact Tennessee Respite Coalition for TN respite resources! Visit https://tnrespite.org/ or call 1-888-579-3754.
Q: I've seen some cards and flyers in my community claiming someone can be "exempt from wearing a mask because of the ADA." Are these legitimate? What does the ADA say about mask wearing requirements and people with disabilities? (July 16, 2020)
A: Similar materials are circulating nationwide, but they are not legitimate. The ADA does not provide a blanket exemption to people with disabilities from complying with legitimate safety requirements necessary for safe operations. Read more from the US Department of Justice, which released a statement on June 30 addressing this issue.
If a person with a disability is not able to wear a face mask, state and local government agencies and private businesses must consider reasonable modifications to a face mask policy so that the person with the disability can participate in, or benefit from, the programs offered or goods and services that are provided. A reasonable modification means changing policies, practices, and procedures, if needed, to provide goods, services, facilities, privileges, advantages, or accommodations to an individual with a disability. Read more, including examples of modifications.
Q: I'm so relieved that Tennessee updated its guidelines for hospital care during a crisis to make sure people with disabilities have access to life-saving care and accommodations. What are the key points? What can I do if I hear about a hospital not following the new guidelines? (July 2, 2020)
A: Great question. These guidelines help hospitals prepare for the worst during a pandemic: too many people needing care at once. Last week, thanks to a complaint filed by Disability Rights Tennessee and others, new guidance helps ensure that Tennesseans with disabilities have access to healthcare during a health crisis, like COVID-19.
Another key point is that hospitals cannot say "no visitors" for every patient. They must consider "on a case-by-case basis" the needs of a patient with a disability. That means the hospital can allow a support person into the hospital, even if it has a no visitor policy. This also applies to other "institutional facilities" like mental health facilities, nursing facilities, correctional facilities (prisons), and even home care. See pages 2 and 8 of the updated guidelines.
You should contact Disability Rights Tennessee if a hospital is not following the new guidelines: 1-800-342-1660 and GetHelp@disabilityrightstn.org.
Q: I live in a care facility for people with disabilities. I was told I would get an Economic Impact Payment due to COVID-19. Does that payment go to my facility, or to me personally? (June 25, 2020)
A: The IRS recently sent a reminder that Economic Impact Payments go the person, not a nursing facility or provider managing another care setting. That guidance states: "The payments are intended for the recipients, even if a nursing home or other facility or provider receives the person's payment, either directly or indirectly, by direct deposit or check."
Your Economic Impact Payment belongs to you. If you have someone who represents you in managing your money, the payment was likely sent to that person for you. If you haven't heard about it, you should ask that person about the payment.
Q: With policy changes and budget cuts underway, I want to contact policymakers about the issues important to me as a person with a disability. Where do I start? (June 17, 2020)
A: This is a key time to let your representatives know the programs and issues that matter to you. The Tennessee Disability Coalition has an advocacy toolkit to help you learn more.
Q: I receive long-term disability services and supports through a Medicaid waiver program*. Which services can I get at home if I choose not to go into the community during the COVID-19 pandemic? (June 10, 2020)
A: Services like occupational, physical, and speech therapy, language and hearing services, and behavior services are now available remotely (meaning you can get help at your home by phone or video call). Other services that require hands-on help, such as personal assistance, cannot be provided remotely. This TennCare document lists the services that can be provided by "electronic method of service delivery" during the pandemic.
*Medicaid waiver programs in TN include the CHOICES program, Employment and Community First (ECF) CHOICES program, and services provided through the Tennessee Department of Intellectual and Developmental Disabilities (often called the DIDD waivers).
Q: I am a high school student in special education. I know a little bit about "transition services" at my school that will help me prepare for life after high school. With school closed, what can I be doing now to learn more? (June 6, 2020)
A: We highly recommend the resources at Transition Tennessee Vanderbilt University. The first thing to do is download and review the Transition Bill of Rights.
While you are there, sign up for www.transitiontn.org - you can browse all sorts of online resources for students and parents like fact sheets, videos, webinars and more. By signing up for the website, you'll get emailed all sorts of info about events where you can hear from leaders across TN who will help you understand more about how students with disabilities can live a successful life after high school.
Q: I've heard about some great local programs in my town for people needing help during COVID-19. How can I get the word out? (May 28, 2020)
A: Great question! Many local communities and non-profits are responding to the needs of families affected by the economic costs of COVID-19. If you know of programs in your community, please contact Tennessee Disability Pathfinder and make sure those resources are added to the Pathfinder database. You can visit www.DisabilityPathfinder.org or call 1-800-640-4636. Our Pathfinder partners are standing by to help families connect to help during COVID-19.
Q: I've heard there is a cash program to help families who have children and have lost work income due to COVID-19. Where can I learn more? (May 26, 2020)
A: The Tennessee Department of Human Services is offering emergency TANF (Temporary Assistance for Needy Families) cash assistance to families during COVID-19.
To qualify, families must:
- Have lost a job or at least 50% of income after March 11, 2020.
- Have children in the home.
- Be at or below 85th percentile of the state median income (about $52,000 for a family of three).
The emergency help will provide two monthly cash payments:
- $500 to households of two people
- $750 for households of 3-4 people
- $1,000 for households of 5 or more people
For more information, call the Family Assistance Service Center at 1-866-311-4287. Apply online at https://faonlineapp.dhs.tn.gov.
Q: I have questions about COVID testing for people with I/DD. Is there more information about the details? (May 21, 2020)
A: The Governor announced last week that the Tennessee Department of Intellectual and Developmental Disabilities (DIDD) will be offering free, voluntary COVID-19 testing. The tests will be for people getting services through DIDD waivers, the Employment and Community First CHOICES program, or who live in DIDD's intermediate care facilities. DIDD has provided more details about the testing, which has already begun in some areas. See below for more Q&As about those details.
Q: Will COVID-19 testing be required for people getting services through DIDD?
A: No, testing is voluntary. All persons must consent to getting the test and may decline. The department is strongly encouraging tests for every person getting services. There have been several people who were tested and had COVID-19 without knowing they were sick. It’s important to have that information so that a person without symptoms does not spread it to their housemates, staff, or families.
Q: I’ve heard that the test swab through the nose can be really uncomfortable. Is there a different way to be tested?
A: Yes! DIDD will be using a different kind of nasal swab than what’s been used for other tests around the state. The test swab that has been used so far has to go about two inches up the nose to collect a sample. This new swab will only go about a half-inch into the nose. A graphic showing the swab can be found here, under "Testing and Results Guidance:" https://www.tn.gov/didd/covid-19.html.
Q: I get services through DIDD and am thinking of getting tested. What happens if I test positive?
A: If you test positive, your provider agency will notify DIDD of the positive result. Your provider will then follow quarantine procedures in your home. Staff will use personal protective equipment (like masks, gloves, etc.) to keep staff and any housemates that may live there from being further exposed to the virus.
Q: Will my staff be tested?
A: No, but staff are being encouraged to get free tests at their local health department.
Q: What happens if a staff person tests positive?
A: Providers are required to notify DIDD of all staff positives. Staff are to follow quarantine and isolation procedures, as advised by the CDC and the Department of Health.
Q: My child's behavior has gotten more challenging during this situation. Are there parenting tools to help us manage behavior while we're staying home? (May 19, 2020)
A: Challenging behavior can increase when children are feeling more anxious, unsettled, or frustrated. There are some great online tools for positive behavior supports at home that may be helpful.
- Supporting Families with Positive Behavioral Interventions & Supports at Home (also in Spanish)
- The Center for START Services Therapeutic Activities Toolkit
- Cincinnati Children's Developmental and Behavioral Pediatrics Coronavirus Virtual Outreach Series
For families of very young children, visit kidcentral tn to learn about the TN Dept. of Mental Health's Regional Intervention Program.
Q: If Tennessee hospitals become overwhelmed, will people with disabilities and pre-existing conditions get equal access to care? (May 14, 2020)
A: In March, Tennessee disability advocacy groups filed a civil rights complaint about 2016 guidance for medical care that prioritized "healthy" people over people with disabilities and other pre-existing conditions. The state has since removed the 2016 guidance. The U.S. Dept. of Health and Human Services issued a bulletin and new guidance to hospitals.
This information emphasizes that laws and regulations prohibit discrimination, including based on age or disability. The guidance outlines what hospitals and healthcare workers must do to communicate well with people who need accommodations.
If you need accommodations to communicate about healthcare, you can find tools to help on the Council's COVID-19 resource pages:
Q: As Tennessee begins to reopen businesses and public places, what's the best way to keep track of health statistics and the changing rules? (May 12, 2020)
A: The best online resource for up-to-date statistics is the Tennessee Dept. of Health Covid-19 page, which is updated daily: https://www.tn.gov/health/cedep/ncov.html.
The Governor and state department leaders summarize key statistics and talk about plans and guidelines for reopening during frequent media briefings. You can watch those briefings live, or watch recordings of past briefings, here.
Q: With school, day programs, and activities canceled, my family member is struggling with the lack of structure and routine. Are there ideas or resources to help? (May 7, 2020)
A: We know this is a hard time for many who have suddenly lost the daily routine and activities they rely on. There are lots of resources out there, but we can share a few great places to start:
- Connect with People First Tennessee, the state’s self-advocacy group led by and designed for people with intellectual and developmental disabilities.
- Tennessee Disability Pathfinder published Stuck at Home Resources.
- Friends Life Community is offering virtual activities and help with adjusting to social distancing. Also check out "Establishing a Routine at Home," from Friends Life.
- The Arc Tennessee published "Resources for Students with Special Needs Learning from Home”
- Wide Open School (from Understood.org and Common Sense Media)
- Support and Training for Exceptional Parents (STEP) published a great guide to resources for learning at home
Q: I am extremely worried about maintaining my care. I will die without care from my assistants. What is being done to ensure I can remain in my home? (May 6, 2020)
A: The State Medicaid Agency, TennCare has issued guidance on how providers can continue sending staff into the community. The guidance includes this statement:
“Most importantly, [TN’s Long Term Services and Supports programs] remain obligated to ensure that [Tennesseans] receive Home and Community Based Services during this critical time.” This guidance applies to TennCare long-term services and supports programs (LTSS), which are the state's largest programs that provide in-home care. Read about LTSS here.
The Council staff simplifies and publishes updates as we receive them in the Council’s weekly policy newsletter. Subscribe here.
We also created a webpage with sources for updated policies from TN’s Home and Community Based Services programs. These are good ways to stay updated as the situation continues to change.
Q: Can families who are struggling with job losses get temporary financial help? What resources are out there to help these families? (April 30, 2020)
A: The CARES Act recently passed Congress. It includes financial relief in two ways:
- Stimulus checks to most Americans (which are starting to hit bank accounts now)
- Increased unemployment payments to Americans who lose their jobs
Also, the Tennessee Department of Human Services is offering financial help to some Tennesseans who have lost their jobs due to COVID-19.
The Council staff simplifies and publishes updates as we get them in the Council’s weekly policy newsletter. Subscribe here.
The best resource for specific questions about support for families is Tennessee Disability Pathfinder:
- Pathfinder COVID-19 web page
- Pathfinder help line, including multi-cultural services: 800-640-4636
Q: I find myself searching the internet for educational resources for my child. I don’t know where to look or what makes a resource “good”. How do I find the best resources to help my child with a disability learn at home? (April 28, 2020)
A: The Tennessee Department of Education continues to release updated information on its website for local education agencies, educators and families. The guidance sets expectations and timelines for providing remote learning to students with disabilities.
The Vanderbilt Kennedy Center also partnered with the TN Dept. of Education to provide special education resources for families and for educators.
Another excellent resource for family-friendly explanations of changes to special education is The Arc TN's Family Engagement in Special Education project.
Also of note: the TN Dept. of Education recently announced that school districts can apply for new technology grants specifically for special education.
Q: My disability means I need someone with me at the hospital for support. If I get sick, will the hospital let a support person stay with me? (April 24, 2020)
A: Hospitals have "no visitor" policies to protect patients and staff during COVID-19. However, the Americans with Disabilities Act says people with disabilities can get accommodations to access medical care. The Council has partnered with Disability Rights Tennessee and The Arc Tennessee on this fact sheet about your rights at the hospital during COVID-19. If you have been denied a support person at the hospital, you can call Disability Right TN at 800-342-1660.
Q: I need help understanding and explaining COVID-19. (April 20, 2020)
A: The Council has gathered quality resources about COVID-19 for people with disabilities. These visual tools, social stories, and videos use simple language to explain COVID-19, social distancing, and how to stay safe and connected right now.
This collection is available in two places: