COVID-19 Advocacy Priorities Survey

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NMD United understands that the disability community is facing a lot of emergency management challenges amidst the COVID-19 pandemic. The mission of our organization requires immediate support efforts to educate and provide meaningful and accurate resources to our community. We want to know your priorities so we can focus our advocacy efforts to make the most impact today.

Please answer the following questions as honestly as possible, from your individual perspective. At the end of the survey, you will have an opportunity to submit questions, concerns, and other comments. Please be patient if we do not respond immediately in light of this crisis. Thank you.

What is your age? *

What is your ZIP code or International Postal code? *

Do you have a neuromuscular disability? *

Yes

Do you have any disability or medical condition that impacts your ability to perform activities of daily living? ie. transferring, showering, eating *

Yes

Protection when healthy *

Please select no more than three questions that you feel are most important. Support staff = caregiver, nurse, interpreter, translator, etc.

How can I protect myself and my support staff in my home from catching COVID-19?

What safety plans and protocols should I consider with my support staff?

How can I communicate my safety plans and protocols to my family, friends, and outside visitors?

How can I communicate my safety plans and protocols to my support staff?

How do I ensure that my support staff is considered essential in the community?

What happens if my support staff gets sick?

When is it safe to go to the hospital/clinic for other medical needs not related to symptoms for COVID-19?

None of these questions apply to me.

Required

Protection when sick *

Please select no more than three questions that you feel are most important. Support staff = caregiver, nurse, interpreter, translator, etc.

How do I determine when it is absolutely necessary to go to the emergency room?

What happens if I get sick and am fully reliant on my support staff to meet my basic needs?

Will my support staff be allowed in the hospital with me if I get sick?

How do I communicate my needs if I become non-verbal or too lethargic to advocate for myself in a hospital setting?

Will I be institutionalized if my options for receiving community care are limited?

How do I advocate for my medical wishes and protocols to be followed by my medical team?

None of these questions apply to me.

Required

Supplies, resources, and equipment *

Please select no more than three questions that you feel are most important.

Where do I find consumable medical supplies, assistive technology, and durable medical equipment?

How do I afford consumable medical supplies, assistive technology, and durable medical equipment?

How can I access mental health supports and social engagement online?

What grieving and coping strategies are available and accessible to me online?

Do I need to be afraid that my ventilator or other necessary equipment will be taken away?

None of these questions apply to me.

Required

Would you be interested in volunteering with NMD United for our COVID-19 Task Force? *

Yes

Other:

Do you have any other questions or concerns that were not included in this survey?

If you would like us to contact you, please provide the best way to reach you here:

Have you read our COVID-19 Plan and Prep Guide?

The goal of our guide is to provide readers with fact-based resources on how to reduce and prevent the spread of COVID-19. It also includes practical coping tools and life-management strategies that are useful for not only this specific situation, but for any viral or bacterial infection risk.

Access this guide here: https://www.nmdunited.org/covid-19-guide

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