Federal Ask Regarding COVID-19 Relief


At the federal level, Congress is continuing to work on the next COVID-19 relief package, and people with disabilities are at risk of being forgotten. Advocates must work together to ensure this doesn’t happen. You can find your legislators by using this tool.

To save you time, Paraquad has put together the following templates for you to use when reaching out to your legislators:

Please include an increase in Medicaid funding in the next COVID-19 bill so that I can continue living safely in my community! (Tag your legislators)

Hello, my name is ___(Your Name)___ I am a constituent, and my zip code is ___(Your Zip)___. I am a person with a disability, and I am extremely disappointed that HEALS does not include increased funding for Medicaid or protections for home and community-based services (HCBS). I rely on HCBS to live safely and independently in my home, not a nursing home. If HCBS is not funded, I could be forced to live in a nursing home, where the risk of COVID is much higher than in my community. I urge __(Your Elected Official)__to include increased Medicaid and HCBS funding in the final bill.
Thank you for your time!

Dear Representative/Senator ____(Your Elected Official)_____,
I am a voter with a disability, who is an active member of your district. I am extremely disappointed that HEALS does not include increased funding for Medicaid or protections for home and community-based services (HCBS). I rely on HCBS to live safely and independently in my home, not a nursing home. [2-3 sentences about your attendants and how Medicaid helps you]. If HCBS is not funded I will be forced to live in a nursing home, where the risk of COVID is much higher than in my community. I do not want to live in a nursing home, I want to be an active member of my community! I urge you to advocate for increased Medicaid and HCBS funding in the final bill.
Thank you for your time.
[Your Name & Contact Info]

If you would like assistance with crafting your message, please reach out to Sarah at sschwegel@paraquad.org or 314-289-4277.



Guest Blog by Gabriella Garbero

For more from Gabriella visit https://thegirlwhosits.com/ 

Having been a disabled Medicaid recipient for all of my adult life, I have seen firsthand how this program has allowed people with disabilities to live as independently as possible, in turn making society richer, more diverse, and an all-around better place to be. Medicaid has been critical in my life and the lives of people I care about because it has provided unparalleled coverage for many unique heath care needs, including home health services that allow us to live in the community, work, and go to school.

The effect that the Missouri Medicaid program has had on my life is truly immeasurable. I enrolled in Medicaid when I was eighteen and unsure how I would be able to live independently and go to college. I was immediately put on a waiver program that provided me with caregivers so I could live away from my parents and experience independent life for the first time. As I have gotten older, Medicaid has become even more valuable to my way of life. If I did not have it, I truly do not know where I would be, as being physically dependent on family members has become less possible over the years due to the ages of my parents and distance of my siblings. Medicaid has enabled and encouraged my independence in this way and so many others.

I began law school in the fall of 2018 and am pursuing a health law concentration. In my studies I have learned even more about Medicaid from different perspectives. Medicaid has widened the safety net for so many people who would otherwise be excluded from the health care market. In Missouri, a quarter of all people with disabilities and two-thirds of nursing home residents are covered by Medicaid. Now, with COVID-19 affecting virtually all of our lives, Medicaid has become an important protective tool for society because it covers the most vulnerable. Now, more than ever, we see that taking care of ourselves includes taking care of others who may not have the resources to do so themselves. Health care is and always has been a collective effort in which no one should be left out or overlooked, regardless of their level of need. Medicaid is an important entity for this purpose.

For those of us who are medically vulnerable, the stakes are always high, but are especially high right now due to the pandemic. Medicaid has always been a program that can bend and stretch in ways that allow for coverage of whoever is left out of the current health care market. That could be any of us at any point in life. If the pandemic has taught us anything, it should be that denying healthcare to individuals that need it can have catastrophic effects on us all. We need to support, strengthen, and increase access to Medicaid so that all Missourians have the quality, affordable healthcare that they and their families need to get and stay healthy.

Huge Turnout for Paraquad’s Virtual Medicaid Education Forum


More than 80 disability activists, civic leaders, and community members attended our virtual forum exploring the importance of Medicaid to independent living for people with disabilities.

(Read full release on STLtoday)

Last week, we hosted community forum with disability activists Ellie Stitzer and Gabriella Garbero as part of our ongoing Community Voices for Medicaid initiative aimed at educating Missourians about the importance of Medicaid to the health and well-being of people with disabilities.

Public policy and advocacy specialist Sarah Schwegel moderated the event, which started with Ellie and Gabriella sharing a bit about growing up with a disability, their experiences in school, and their relationships with family, friends, and mentors.  From there, the conversation shifted into the Medicaid application and renewal process, and the program’s central role in keeping the panelists out of nursing homes.  The complications and frustrations people with disabilities often face as they navigate the system, including oppressive income and asset limits, system errors resulting in lost coverage, and low wages that make it hard to find and retain quality personal care attendants (PCAs), were also discussed.  Afterwards, State Representative Sarah Unsicker commented, “I’m glad I went because I learned more about the lives of people with spinal muscular atrophy and hearing personal stories is important to making good policy.”

If you missed this awesome educational opportunity, you can access the recorded webinar here.

In a continuation of our efforts, we’re partnering with Missouri Rural Crisis Center (MRCC) on July 9th to host a Facebook Live Ask Me Anything: Medicaid and Disability. Medicaid Ambassador Tyra Williams will tell her story and answer public questions about how the program makes it possible for her be an active member of her community.

If you would like more information about Paraquad’s Community Voices for Medicaid initiative, please call Sarah Schwegel at 314.289.4277, or email sschwegel@paraquad.org.

Meaningful Change – A Message from Aimee and Jerry


Dear Paraquad Supporters,

In our mission to empower people with disabilities to live more independently, Paraquad works to address root causes of inequality. This year has presented unique challenges for our work, as COVID-19 has exacerbated inequalities in access to resources such as food, healthcare, and personal care.

Now, we are again reminded of another challenge that faces many of the people we serve. Racism is a disease that has plagued the United States since its inception. People with disabilities are diverse, coming from all races and backgrounds, and many face not only the barriers of an inaccessible society but also the injustice of racism.

From the early days of the disability rights movement, disability advocates have collaborated with and supported black civil rights activists. Brad Lomax, a black civil rights activist, was a leader in the disability rights movement and founder of one of the first Centers for Independent Living. He and other black advocates participated in the 504 sit-ins and helped pass landmark disability legislation. When Deaf students at Gallaudet University led the famous Deaf President Now movement, local black-owned businesses supported the movement by writing letters, donating money and services, and joining marches.

Today, we draw upon that long history of partnership to stand with the black community against racial hatred and violence. We are committed to working with our fellow advocates to dismantle structural racism at all levels. As an organization, we are committed to examine our own practices and continue to do better. We will keep advocating for policies that help those who do not have equal access to healthcare, employment, housing, and other basic needs.

Thank you for your belief in us and your dedication to making the world a better place. Paraquad will not stand silent while inequality and violence rages in our nation. Meaningful change will require all of us to work together. We accept that challenge and look forward to collaborating with you in the creation of a more equitable world.

In power,

Aimee Wehmeier and Jerry Ehrlich

Social Movements: An Introduction


2020 has been a rough year. There is a global pandemic, communities are hurting, people are dying, and everything in the news is bleak. While what is happening today may seem hopeless, nationwide protests aren’t necessarily bad; they can invoke massive social change. During times of civil unrest, like we are experiencing now, we can look to other social movements, not only for comfort–to know what tactics have created change in the past but also for a framework for how to act and how to have cross-movement solidarity.

In this blog series, we will examine the intersectionality of four major movements: Civil Rights in the late 1950s and early 1960s, Second-Wave Feminism, LGBTQIA+ Pride, and Disability Rights. None of these movements would have been successful without the support of other movements and multiply marginalized (having more than one minority identity) people.

Before we can dive into the history of social movements to understand how cross-movement solidarity and being aware of intersectionality is crucial to any movement’s success, we need to understand what intersectionality is. As a concept, intersectionality is not new; in fact, Maria W. Stewart alluded to the idea of intersectionality in the 1830s. The term itself was coined by Kimberle Crenshaw in 1989. It is defined as “the interconnected nature of social categorizations such as race, class, and gender, as they apply to a given individual or group regarded as creating overlapping and interdependent systems of discrimination or disadvantage”. This definition is complicated and very academic. Another way to conceptualize intersectionality is to list out how you identify yourself and think about what identities might cause you to be discriminated against or oppressed. A white, middle-class, nondisabled man in his 40s is likely going to experience less discrimination than a 70-year-old Black woman who has a visible disability and is living in poverty. Folks who have intersecting identities are more likely to experience discrimination than those without. For example, a Black woman may experience discrimination in employment in companies where a Black man or a white woman world not.

Our identities make up how we interact with the world and how the world interacts with us. Massive social movements have been necessary to ensure equality for oppressed people for a long time (early settlers came to America to escape religious oppression). What our country is experiencing now is not new, and has a proven record of change, although slow and incremental. Take a moment to reflect on the Disability Rights Movement (which we will examine in a future post): the Rehabilitation Act was passed in 1973, section 504 was not enforced until 1977, and it took a 24-day sit-in to get that done; then ADA was not signed until 1990 after a number of other protests and a crawl up the capitol steps. Reform does not happen fast. Through examining past social movements, including our own, we can learn to be better allies and further rights of all people.

2021-2023 State Plan for Independent Living (SPIL)


Authorized under the Rehabilitation Act of 1973 and the Workforce Innovation and Opportunity Act of 2015, the State Plan for Independent Living (SPIL) is a three-year plan developed by the Missouri Statewide Independent Living Council (MOSILC). The plan issues guidance for the state to achieve the mission of ensuring individuals with a disability in Missouri can live independently and participate in the community as they choose. Centers for Independent Living (CILs) are primarily responsible for implementing the mission of the SPIL; however, other agencies that serve people with disabilities are expected to implement the plan as well.

There are four specific goals, each with measurable action steps outlined to fulfill the mission of independent living for people with disabilities in Missouri.

The first goal is community integration across housing, employment, and transportation. To achieve the housing portion of this goal, CILs will use educational materials to influence housing authorities to encourage universal design. CILs and other stakeholders, such as people with disabilities, will advocate for and take an active role in developing policies ensuring access to affordable and accessible housing. The second part of this goal calls for CILs and other agencies dedicated to independent living to increase competitive integrated employment. To do this, CIL staff will sit on local boards and commissions, learn about work incentives through webinars/online classes, educate employers and consumers about work incentives, and facilitate Vocational Rehabilitation programs such as Summer Work Experience and Pre-ETS. To meet the goal of community integration through transportation, CILs will increase awareness of existing systems and make sure information is accessible, influence transit planning by serving on boards and commissions, and work to increase the number of consumers who use transit services.

The second goal is to stimulate civic engagement through self-advocacy, voter registration, and encouraging advocates to serve on boards and commissions. CILs will educate people with disabilities on the importance of civic engagement and self-advocacy and prepare advocates to sit on boards, committees, and commissions. In addition, CILs will educate policymakers about the importance of disability policy issues by hosting voter forums and advocacy days. Finally, CILs will assist election commissions with ADA compliance.

The third goal is to ensure emergency preparedness by making sure consumers have access to resources during emergencies and that people with disabilities are included in disaster planning and emergency management. People with disabilities are at high risk of being negatively affected by disasters and must be included in emergency preparedness. CILs are to make an emergency plan and share accessible information about disasters with their consumers. CIL staff needs to encourage participants to have their own emergency plans. CILs and other organizations need to collaborate to ensure emergency plans are inclusive of people with disabilities.

The fourth goal is to grow the Statewide Independent Living Council’s (SILC) capacity to support more people with disabilities in Missouri. To increase the SILC’s capacity, resources will need to be obtained and developed so that dedicated staff can implement the action plan outlined in the SPIL.

The SILC committee will meet bi-monthly to evaluate the success of the SPIL. Success will be measured in the implementation of time-specific action steps, satisfaction surveys, and program reports from CILs. The committee will create an annual independent living progress report.

While there are 22 Centers for Independent Living in Missouri and no unserved people in our state, the SPIL recognizes the need to continue outreach to underserved populations. These populations include youth, individuals who are Deaf/hard of hearing, veterans, folks with mental health diagnoses, people with intellectual disabilities, individuals who are blind/low vision, and other multiply marginalized people. CILs will make an effort to better serve people in these groups and will outreach to other organizations to make sure that traditionally underserved individuals are able to receive the services they need to be successful in the community.

The full SPIL is available for review here. If you have comments regarding the 2021-2023 SPIL, please submit them to AdonisTBrown@mosilc.org by June 15th.

2020 Census


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


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


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


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!