2020 Census

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You probably know by now that 2020 is a census year. The census is a survey of every household conducted by the US Census Bureau. The federal government is required by the United States Constitution to do this survey every 10 years. 2020 is the first year the census is available online, in addition to phone and by paper. The census includes questions about the number of people living in your household, their ages, and other demographic information.

The information collected from the census gives leaders insight into who makes up the population and where people live; this determines how congressional districts are drawn and how many delegates each state gets in the Electoral College. In addition to influencing politics, census results help policymakers create data-informed policies to benefit the country. The census also determines how federal funds are allocated between states. Allocated funds are used for a wide variety of programs, from healthcare and educational settings to social programs like SNAP. The uses for census data are endless, and leaders use the data to help grow their communities.

For every person that fills out the census, it is estimated that Missouri will receive $1,300 in federal funds. This money is always important; however, federal funding will have an even larger impact on our state this coming year. The COVID-19 pandemic has not only caused Missouri to lose revenue, but it has also caused people to rely more on social services such as unemployment and SNAP. Now more than ever, your response to the census is crucial.

There are several ways to fill out the census, and all of them are incredibly safe. The Census Bureau is required to protect your data, so no personal identifying information is shared when data is made public. You can fill out the census online by visiting 2020census.gov, over the phone by calling 844-330-2020, by filling out a paper copy that was mailed to you, or this summer when census takers visit homes that have not already responded. If you are not a native English speaker, you can find the number for your preferred language here. The census must be completed by October 31, but the questions asked will refer to where you were living and the people in your household as of April 1, 2020, so that the data is consistent across the country.

It is important to know that the census will not ask you for any money, your social security number, or banking information. Census works will not threaten you with jail for refusing to fill out the census. You can read more about scams here.

If you have questions about filling out the census, please contact the Public Policy and Advocacy Department by emailing sschwegel@paraquad.org, or calling 314-289-4200.

Action Required: Federal Medical Assistance Percentage Increase Request

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Last week, we reported that there were no increases or cuts to Consumer Directed Services providers or Centers for Independent Living in the FY 2021 budget. This is still true; however, providers and CILs will struggle to adequately provide services to people with disabilities without a rate increase.

You can help secure a potential increase by reaching out to members of Congress. Call and email your federal representatives and senators to share the following message with them:

My name is ______, I am a constituent in Missouri. My zip code is _____. I am calling today to ask ______ to work with their colleagues at the federal level to enhance the Federal Medical Assistance Percentage (FMAP). FMAP Funding may be used as general revenue in Missouri and could help disabled voters maintain crucial services that help them live independently. Without enhanced FMAP disabled constituents could lose services, potentially resulting in costly hospitalizations that could become fatal during a pandemic.
Thank you for your time.

If you use social media, you can share a sentence or two about how important CDS/Paraquad is to you along with the ask “enhance FMAP so I can remain healthy and independent”. Be sure to tag your representatives, senators, and Paraquad so that we can share!

#WeAreEssential Week 4 – The Danger of Institutions

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This week we are refocusing our attention on the importance of Home and Community Based Services (HCBS). One of the most important services Centers for Independent Living, like Paraquad, provides is transition services for individuals who are living in nursing homes or other institutions but would like to live independently in the community. COVID-19 is running wild in nursing homes across the country, putting people with significant disabilities and the elderly (who are already at increased risk) in grave danger.

It is crucial for Congress to increase funding to HCBS so that people with disabilities and older adults are able to stay in their homes. At the best of times, Medicaid funded nursing homes and institutions are understaffed and generally unpleasant places to live, not to mention far more expensive than HCBS. During a global pandemic, the negatives of nursing homes and other long-term care facilities are exacerbated; it is difficult to control illness when folks are living in small spaces and employees go from room to room assisting residents. Often people who do not need to be institutionalized become institutionalized due to illness. With increased funding to HCBS people with disabilities and older adults will have the opportunity to remain in their community and stay healthy.

This week we urge you to tell Congress:
• Disabled people in institutions are not disposable; Congress must act now to support our communities. #WeAreEssential
• Coronavirus numbers have increased dramatically in nursing homes and long-term care facilities – over 10,000 deaths. Congress needs to support these workers. #WeAreEssential
• My civil rights and my life will be at stake if I cannot stay in my home during the #coronavirus outbreak. Congress needs to support home and community-based services in coronavirus relief! #WeAreEssential

#WeAreEssential Week 3 – SSI & SSDI #FixTheGlitch

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This week, in addition to using #WeAreEssential to talk about HCBS and Paid Family Medical Leave, the disability community is using #FixTheGlitch. We need to ensure that all Americans are able to receive their Recovery Rebate that was included in the CARES Act and that everyone who files taxes and meets the eligibility guidelines will receive.

Many people with disabilities who receive Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), and certain VA benefits are not required to file taxes; therefore, they will not automatically receive payments. The IRS and Social Security Administration worked together to fix the problem for people who receive SSDI, but not SSI or VA benefits. This situation is creating confusion amongst beneficiaries and increasing barriers to stimulus checks, as it is unclear who needs to fill out the IRS non-filer form (best practice is to fill it out if you did not pay taxes in 2018 or do not plan to pay them for 2019).

This week’s asks are focused on the IRS/Treasury, the Social Security Administration (SSA) and Veterans Affairs (VA), as well as Congress:

Sample text to tweet/email the IRS/Treasury, SSA, and VA:

#FixTheGlitch and share data and make these payments automatically. #WeAreEssential

Sample text to tweet/email Congress:

Please tell IRS/Treasury, SSA, and the VA to #FixTheGlitch by sharing data and making stimulus payments automatically, and if they will not, please order Information sharing amongst agencies in the next COVID-19 bill. #WeAreEssential

Don’t forget to tag Paraquad in your social posts so that we can lift up your voice and make sure the disability community is heard!

Sharing a Few Good Vibrations

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Paraquad is joining forces with other community leaders to make a regional impact on the health and safety of vulnerable populations through the COVID-19 Regional Response Team. Paraquad is ensuring the social and economic needs of people with disabilities are addressed.

“While our ability to provide direct services is impacted, our commitment to ensuring people with disabilities remain living in the community has never been stronger,” said Aimee Wehmeier, Paraquad’s President.

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Paraquad team member Kat taking groceries to participants.

Most of Paraquad’s board and staff have a disability so problem-solving and resourcefulness are second nature. It’s no surprise how quickly employees shifted to meet the emergent needs of the community. Staff are making well-check calls, purchasing and delivering groceries and supplies, making masks, providing information and resources and even providing emergency care.

Paraquad is using funding from the St. Louis Community Foundation and the Craig H. Neilsen Foundation to meet the immediate needs of the community.

“At a time when we could be consumed with our own health and safety concerns, we are surrounded by people who want to help,” stated Dr. Kerri Morgan, Paraquad Board Chair.

To ease the loneliness of social distancing, Paraquad launched a Facebook group, the St. Louis-area COVID-19 Isolation Chamber to share stories, build connections, and provide relevant COVID-19 updates.

In addition, the Paraquad Health and Wellness Center is creating a series of short, adapted exercise videos to help members stay active at home. Check out the videos on the Paraquad Health and Wellness Center Facebook group.

Thank you for supporting Paraquad as we continue doing what we do best: empowering people with disabilities to remain living independently—especially through this COVID-19 crisis.

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#WeAreEssential Week 2 – Paid Family and Medical Leave

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This week, members of the disability community are adding Paid Family and Medical Leave to our list of asks (don’t stop talking about HCBS).

Families First Coronavirus Response Act included two weeks of paid sick leave for people who were diagnosed with COVID-19, needed to self-isolate to avoid becoming ill, or to take care of someone who was diagnosed or instructed to self-isolate. The Act also authorized 12 weeks of leave for parents who need to take care of children of all ages who lost their typical source of care.

However, many people feel that this didn’t meet their needs. Individuals who work for organizations with less than 50 employees or more than 500 employees, and many health care workers, are not eligible for leave. In addition to the limited eligibility, caregiver leave is only paid at 66% of an individual’s salary.

This week’s asks are targeted to Congress.

Tell Congress to:

  • Expand Paid leave for people with disabilities who need to self-isolate.
  • Ensure non-parent caregivers can take leave to care for their loved ones who have lost care.
  • Pay caregivers like everyone else!

The best way to reach your members of congress is via Twitter, Facebook, and Email, since everyone is working from home. You can find your members of congress here.

If you have an experience with paid leave (either good or bad) and COVID-19, reach out to the Public Policy and Advocacy by calling (314-289-4277) or emailing Sarah and she will help you craft a story to share across social media channels.

#WeAreEssential Week 1 – Home and Community Based Services

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Home and Community Based Services (HCBS) allow people with disabilities to live independently in the community. COVID-19 is negatively affecting people’s access to HCBS—if personal care attendants don’t come to work because they are sick, and if the person with a disability can’t find another attendant, he or she could be forced into a nursing home, disabled people could be forced into institutions and out of their homes.

#WeAreEssential HCBS Sample Tweets & Facebook Posts:

  • Disabled people in institutions are not disposable. Congress must act now to support our communities! #WeAreEssential
  • Coronavirus numbers have increased dramatically in nursing homes and long-term care facilities – more than 400 as of last week (a 200% increase). Congress needs to support these workers. #WeAreEssential
  • My civil rights and my life will be at stake if I cannot stay in my home during the #coronavirus outbreak. Congress needs to support home and community-based services in coronavirus relief! #WeAreEssential

You can use this language, along with a photo of you in your home or with your attendant to post on social media. Be sure to tag your members of Congress (they can be found here) and Paraquad so we can share your story!

#WeAreEssential Campaign – Introductory Blog Post

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Over the next 4 weeks, the disability community, lead by AAPD and Center for American Progress, is building a social media campaign and rallying behind #WeAreEssential to ensure that disability needs are included in the next COVID-19 response packages. There will be a different theme each week so that people with disabilities can share their stories:

Week 1 (April 6) – Home and Community-Based Services
Ask: Tell Congress Medicaid funding for home and community-based services must be increased.

Week 2 (April 13) – Paid Family and medical leave
Ask: Congress and the Department of Labor need to expand paid family and medical leave and ensure that everyone is paid fairly while caring for their loved ones.

Week 3 (April 20) – SSI & SSDI and the Recovery Rebate #FixTheGlitch
Ask: #FixTheGlitch Congress must compel agencies to work together to share data so that all eligible individuals can get the rebate checks.

Week 4 (April 27) – Medication and Supplies
Ask: Tell the President to invoke #DefenseProductionActNow. There is an extreme shortage of supplies such as ventilators and face masks. At the state and local level, people must be able to access their medications.

Each week, we will provide background information on the topics as well as templates and suggestions for you to use to reach out to your elected officials. These are unprecedented times, and innovative advocacy is crucial to the success of our cause. The disability community needs to be creative to ensure they are not forgotten. Right now, the best way to contact officials is through social media and email.

If you are new to digital advocacy and have any questions, please reach out to Sarah at 314-289-4277 or sschwegel@paraquad.org; we are all learning about new tools and how to organize without meeting in person.

How to Qualify for Social Security Disability Benefits after a Spinal Cord Injury

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Nearly 300,000 people in the US live with debilitating spinal cord injuries, and more than 12,000 per year suffer a spinal cord injury, usually as the result of an auto accident or some other type of accident. Anyone with a spinal cord injury can file a claim for Social Security disability benefits as long as the injury has lasted at least three months and is expected to make it impossible for you to work for at least 12 months. Disability benefits can be used to help pay for housing expenses and other costs so that you don’t have to worry about getting by while you cannot work.

Medically Qualifying for Disability Benefits Due to A Spinal Cord Injury

In order to get your claim for disability benefits approved because of a spinal cord injury you will need to meet the requirements listed in the Social Security Administration’s Blue Book. The Blue Book requirements for a spinal cord injury are very details. In order to qualify you must have a documented spinal cord injury that causes one of these three conditions:

  • Complete loss of function of any part of the body because of spinal cord injury, such as paralysis of an arm or leg. Paraplegic and quadriplegic people can automatically qualify for benefits under this part of the listing. But others can qualify under this part of the listing as well. Spinal cord injuries can paralyze other muscles and qualify for benefits because of that. For example, spinal cord injuries that cause paralysis in the stomach, intestines, or bladder.
  • Abnormal ability of movement in at least two extremities (either an arm and a leg or two arms or two legs) resulting in extreme difficulty in the ability to balance while standing or walking, to stand up from a seated position, or to use the arms and/or hands.
  • A significant physical spinal cord problem not quite severe enough to be extreme, combined with a serious limitation in any one of the following mental areas:
    • The ability to understand, remember, or use information.
    • Social interactions
    • The ability to concentrate or to work quickly.
    • The ability to take care of oneself or adapt to new changes.

You will have to submit medical evidence including a doctor’s diagnosis, scan and test results, and statements from caseworkers or other professionals that provide proof of your condition in order to have your claim approved.

Medical Vocational Allowance

You also might qualify for disability benefits under the Medical Vocational Allowance. If you don’t meet the criteria in the Blue Book listing but can’t work because of a spinal cord injury you can file a claim for disability benefits and ask for a Residual Functional Capacity evaluation. If the evaluation finds that there is no full-time work that you can do with your injury your claim for disability benefits can be approved even if you don’t meet the Blue Book listing requirements.

Filing for Social Security Disability Benefits

Applying online for Social Security disability benefits is a good option for most people but if you have questions about the application or need help filing because you want to ask for a Residual Functional Capacity evaluation you can make an appointment at your local Social Security office to apply in person. If you apply in person don’t forget to bring copies of all of your medical documentation with you.

Resources:

Paraquad: https://www.paraquad.org/

SSA’s Blue Book: https://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm

Medical Vocational Allowance: https://www.disabilitybenefitscenter.org/glossary/medical-vocational-allowance

Residual Functional Capacity: https://www.disabilitybenefitscenter.org/glossary/residual-functional-capacity-rfc

Apply Online: https://www.ssa.gov/benefits/forms/#h3

Local SSA Office: https://secure.ssa.gov/ICON/main.jsp