Navigating the System Exhibit Guide


A Note from the Curator

Welcome to Navigating the System: Reflections on Missouri Medicaid. This exhibit is part of the Community Voices for Medicaid project that aims to uplift the voices of Medicaid recipients and educate the broader community about the importance of the program. This exhibit features Twenty-six works by twenty-one artists who use Medicaid, or another government funded health insurance. Each artist created their work while reflecting on how Medicaid has impacted their lives. In some situations, Medicaid has empowered the artists to live rich and fulfilling lives. In other cases, the Medicaid and the bureaucracy that surrounds it has caused stress, frustration, and confusion to the artists, making them feel alone, desperate and underserved.

Following the opening reception, many of the works will be relocated to the Stephen A. Orthwein Center at Paraquad and will be on display through the remainder of 2021. If you are interested in purchasing a work, please contact Paraquad’s Public Policy and Advocacy Department at 314-289-4200 to be connected with the artist.

Thank you,
Sarah Schwegel
Organizing and Advocacy Specialist


  1. Connor, Untitled

Connor is your typical 25-year-old graphic designer. When he is not working as a drawing’s optimizer at an aerospace engineering firm, he is playing video games or power soccer. In 2009 Connor, who has Ulrich’s Muscular Dystrophy became fully ventilator dependent. When he turned 18, he became eligible for Medicaid and nursing and personal care attendant (PCA) services.

Prior to being eligible for Medicaid, Connor’s family had to private pay for nursing and do all of his PCA tasks. This caused a strain on the family. Now he uses the Consumer Directed Services program, as well as the Medically Fragile Adult Waiver to cover his PCA services. These services have been incredibly beneficial to Connor, as they have allowed him to be more independent, and stay out of the hospital. However, Medicaid is not perfect. Connor has to pay a Spend Down, and there are a number of limitations to the program; for example, his nurses are not able to drive him in his wheelchair accessible van, but overall, he is glad the services allow him the independence that he has.

Artist Statement:

I created this piece while reflecting on Medicaid. Specifically, I focused on how it helps me and the limitations of the service.

Image Description: Yellow background with wood like grain is behind letters with an outstretched hand. The letters are all capitalized and spell out the word “independence” broken between the N and the D. The outstretched hand is dark gray. The thumb is pointing to the left and the palm is up.

  1. Richard, Untitled
  2. Richard, Untitled

Richard loves to make and be around art. He is 29 years old and has Autism. In his free time, he enjoys chatting with friends and family, browsing the internet, and watching the Simpsons. He is active in his men’s church group, St. Louis Arc social groups, and Easterseals Midwest. Easterseals and The Arc have been important in Richard’s life, he receives job coaching and has related to some great opportunities. Richard has been on Medicaid for three years.

Before becoming eligible for Medicaid, he was on the Gateway to Better Health program. He much prefers the services he gets through Medicaid, as he feels that the coverage is better. Medicaid has helped him with medical services like doctors’ appointments, ER visits, and dental procedures. He feels that he is much healthier with Medicaid, because they cover more of the services he needs. Richard believes that Medicaid is a vital program. They are reliable and you will get the assistance you need.

Artist Statement:

I love being creative and I am very art oriented. I am excited to be able to share my art with the community and share about how Medicaid has helped me.

Image Description: The first work is a collage. In the upper left corner, there are blue letters R and S. In the upper right third, there is the number 42 in black. In the center of the upper third is a drawn faces with glasses. Eyes and hair are cut out. Nose, lips neck and body are drawn. In the lower half there are magazine clippings. The clippings show silverware, outside, books, cleaning, art, coffee, the letter D, and an orange basketball. The second work is an abstract painting evocative of landscape. From the top down, there is blue with long brush strokes, then dark green and gray with short brush strokes. In the center there is blue and gray, like a pond with rocks around the edge. Below that is bright green with short brush strokes.

  1. Sarah, Self Portrait

Sarah is a self-taught artist with Spinal Muscular Atrophy, a neuromuscular disease. In 2020 Sarah began doing art after a 14-year hiatus caused by the progressive nature of her disability. While in high school she lost the ability to do art after a full day of classes. In 2020 the first at home treatment for SMA was FDA approved, and she began taking it. Since then, she has regained enough strength to do art in her free time.

Sarah uses Medicaid to access home and community-based services that allow her to live independently. In October she was able to achieve a post-COVID independent living goal by moving out of her parents’ house. Prior to COVID-19 she was living in an apartment in the central west end, but due to the pandemic she had to suspend all in-home services and move in with her parents, because she is so susceptible to respiratory illnesses. Without her Medicaid coverage Sarah would have to live with her parent’s full time or go to a nursing home if her parents could not care for her.

Artist Statement:

This piece represents that I am doing what I can within the confines of my body and the system that supports me.

Image Description: This work is made up of three small abstract works. The first is yellow, silver, black, green and blue. The second is purple, black, silver, red, and blue. The third is red, silver, black, yellow, and orange.  All three have curvy shapes representative of a chest, stomach and legs.

  1. Ricky, Untitled

Ricky is incredibly creative. He likes to spend his time drawing, writing science fiction and building worlds for his stories. The 37-year-old is involved in Artists First and is close with his family. When he is not doing art, he is helping his grandma around the house. Ricky has been on Medicaid for several years, and he says that it has helped him become more independent. Medicaid covers his doctors’ appointments and medicines. That is important because he is healthier when he has access to his medicines.

Artist Statement:

I enjoy making landscapes, building my own worlds and writing science fiction.

Image Description: This is a painting of two women the women are shades of gray. One is sitting upright, half kneeling with her hands behind her back. The other is upside down with her legs near the top of the canvas. Her arm is outstretched at the bottom of the canvas, the other woman’s leg is over her arm. The background is a gradient of purple, and then red, like a fiery sunset.

  1. Nakia, Grumpy Cat

Nakia has a shining personality. She is full of smiles and energy. In her free time, she enjoys making jewelry, shopping, and talking with friends. Nakia is a member of Artists First and attends Greater Faith Baptist Church. She has been on Medicaid for 20 years. Medicaid helps her access doctors, medicines, and home and home health services that help her stay active in her home and community. Without Medicaid, Nakia says she’d “be hurting and need help with everything”.

Artist Statement:

Medicaid is a good service; you may be able to get Medicaid and they will help you do the things you like to do.

Image Description: This is a painting of an angry looking cat. The background is gold, and the cat is black and brown. The cat’s ears are large and black, the eyes are blue, the nose is pink. The cat is wearing a blue collar. There are black spots on the cat’s body and a black tip on his tail.

  1. Keith, Untitled

Keith loves coffee, animals, and art. In his free time, he likes to play pool with friends, build things around his house and go to the St. Louis Arc social club. He is 66 years old and recently switched from Medicaid to Medicare as his health coverage. Before Keith was on Medicaid he had to pay on his own and that was hard. Now he can get his medicines and go to doctors without having to pay so much. Although he doesn’t understand why the Medicare premium is so expensive. If he did not have Medicaid/Medicare he would have to find new doctors, and he would struggle to get to where he needs to be, because he does not have a family that can fill the gap if he does not have services.

Artist Statement:

Healthcare lets me live my life and make my art.

Image Description: These are two abstract drawings in one frame. The drawing on the left has squares and diamond shape. The outside of the square is purple, then black then brown. There are brown crosshatch lines and the diamonds the lines created are various shades of blue. The center diamond is orange with a blue center. The drawing on the right is of squares and triangles. The square is outlined in blue then there are black, green, and pink lines alternating filling in the rest of the square. In the center of the square there is a purple, yellow, orange, green, and black triangle. The center of the triangle is green with a black line around it. Then there is an orange line, a magenta line, another orange line, another magenta line, a yellow line and a final magenta line completing the triangle.

  1. Rochelle, Harry the Monster

Rochelle has a passion for learning. Her favorite things are books and art. She keeps busy by going to Artists First and doing the activities at the nursing home that she lives at with her brother. In her free time, she enjoys filling out workbooks to keep her mind active. Rochelle has been a Medicaid recipient for many years, and really appreciates all the things Medicaid does for her, even though it can be confusing and frustrating.

Medicaid pays for her nursing home and any additional health care needs she has. For example, she sometimes has severe panic attacks and needs to be transported to a hospital by ambulance. Rochelle has a friend Renee who helps her manage Medicaid and all her other personal needs. Renee wishes Medicaid was not so complicated so that Rochelle could be more independent while making phone calls and dealing with Medicaid.

Artist Statement:

Color and shapes are important to me. I like to do art when I am having emotions, because art helps me relax.

Image Description: Harry the monster. This is a red oval shape with antennas, legs and arms. The legs and arms are pink and orange with blue lines creating a border. The antennas are black with green circles and yellow lines on top. Inside the red there is a blue mouth with white teeth outlined. And several eyes with pink and yellow concentric circles. The purples are green. There are blue and gray lines around the eyes as eyelashes.

  1. Christopher, Untitled

Chris is an artist, educator, PhD candidate, and a trained community organizer. When asked what Medicaid means to him, he responded, “it is a life saver”. Chris is not currently on Medicaid, as his income exceeds that of the state limits, but while he was a recipient it covered his 20+ surgeries, wheelchair, and home and community-based services.

While Medicaid was extremely helpful to Chris, he acknowledges that it is a bit of a double-edged sword, “there are so many rules and regulations and complicated reporting processes that participants have to go through to have access to services. We are taught to be grateful for what we have, but we as disabled people deserve so much more.” Chris went on to explain that he once had to wait 8 months for approval for a power wheelchair, without which, he is unable to complete crucial daily activities, such as going to work.

Right now, Chris is choosing to go without health coverage because there are too many restrictions, problems with the services, and the cost is too high.

Artist Statement:

This piece represents how we must organize within the system and how the system is observant of our every move and how we can’t function without the system.

Image Description: This collage has four main images. Two photos of community organizers in the lower half of the collage, a sketch of glasses, and an image of the statue of liberty with scaffolding around it.

  1. Gay, Southern Magnolia

Gay is a lifelong artist, with a Master’s in Landscape Architecture. She was recently commissioned by SSM St. Louis University Hospital for 26 large prints. In 2019 Gay was diagnosed with cancer and had to undergo extensive treatment and rehabilitation. Between 2019 and 2020 she was in and out of the hospital and The Rehab Institute of St. Louis. Since Gay was not eligible for Medicaid, she had to rely on private health insurance to cover her medical bills. This was helpful but left many of her needs unmet. Some of those unmet needs included home health help. She had to pay out of pocket to have friends come in three times a week to help with all the household and personal care tasks she could not complete independently.

On November 1, 2021, Gay will finally have healthcare coverage from Medicare. She is looking forward to having assistance paying for her medical services that are keeping her alive and healthy.

Artist Statement:

I use art to understand energies and experiences. This work is how I convey energies and vibrations from flowers.

Image Description:  Two images of flowers are in this work. In the top left corner, there is a small drawing of a southern magnolia. Below that, and in the center of the framed canvas is a geometric representation of the same flower. The geometric image has numbers and a blue spiral from the center. There is also blue shading around the geometric flower.

  1. Marilynne, Structure of Steel

Marilynne is a vibrant 83-year-old woman. She is a historian, artist, and author who is active in the Webster Arts Foundation. When she is not busy working on her book about the Katy Trail and creating the 60 accompanying paintings, she loves visiting with friends and family. She is close to her daughter and granddaughter, and her son calls regularly.

Marilynne has been a Medicaid recipient for many years. It covers her medicines and eye doctors’ appointments, which is helpful in keeping her healthy. For the most part, Marilynne has been happy with the services she receives from Medicaid, although she does wish that it was a little bit easier to get her prescriptions mailed to her, especially during the pandemic. But when asked how she felt about the services she said, “they do what they are supposed to do, and it becomes an important part of your life.” She hopes everyone who needs Medicaid can access it, as it does really help when trying to manage health problems.

Artist Statement:

My health is as strong as steel, but sometimes changes happen when you least expect it.  My health is important to me to continue experimenting in painting. At 83 yrs, I need my eyes, ears and movement. Thank you, Medicaid, for supporting my health. After years of approaching my art in a traditional way, something monumental has happened and I’m exploring new visual paths.   My perspective suddenly is more pronounced. I see structured lines, angles, edges and shapes. My new look is off on a tangent of inspiration and Geometric painting is here to stay.

Image Description: Large abstract painting with geometric shapes and angular lines. The center of the piece has warm colors, yellows, reds, pinks, and oranges, while the outer edges have cool colors, blues, greens, and earth tones. The image is evocative of a steel suspension bridge over a body of water.

  1. Brittany, Untitled

Brittany loves to play video games and make art. Her favorite game is The Witcher, and if she’s not working on an art project, she is playing that. Brittany has plans to go back to school for graphic design and is looking forward to starting that process soon. When asked to describe Medicaid, she called it an “unruly lifesaver”.

She has been a Medicaid Recipient since childhood and has had her fair share of struggles maintaining coverage. Brittany reports that sometimes it gets canceled for unknown reasons, or she submits paperwork, but it is lost by the agency. She is willing to deal with all of this though, because it keeps her medical bills down and allows her to be more independent. Brittany would not be able to afford her doctors and medicines without Medicaid, in turn making her life much more complicated.

Artist Statement:

This piece is designed to convey the feeling of how Medicaid is helpful and a burden at the same time.

Image Description: This is a dark image. The background is grayish blue with white dots that glow, and a green rectangle with grids. There is a human-like figure in the center. It is mostly black with a glowing red heart. The figure is suspended by its arms and seems to be looking down. There are pipes dripping on it in the background.

  1. Michael, Reflecting Monet
  2. Michael, Bridge So Close

After talking with Michael for an hour, you walk away with a sense of a life well lived; he is a musician, artist, teacher and active grandparent. Michael is 72 years old and has been a Medicaid recipient for several years. In 2005 he was diagnosed with arthritis and additional health concerns that forced him to retire from his career as a wedding photographer. Now he spends his days playing music and doing web design projects when he is not shooting as a hobby.

As he has aged, and his health has declined he has had to rely on Medicaid services to keep him active and healthy. For many years his brother was his personal care attendant through the Consumer Directed Services program. This allowed Michael to have help in his home and in the community. Now his daughter is his attendant. When asked about the importance of Medicaid, Michael said, “I don’t know what I would do without it. It makes doctors and medicines affordable, and it allows me to be creative because I am not preoccupied with basic survival needs”

Artist Statement:

Medicaid helps me continue my art, because without the services I receive I would not be able to go out in the community and create.

Image Description: Reflections of Monet – abstract photograph of autumn trees reflected in water that is rippling out from something falling in it. The colors are vibrant earth tones, greens, browns, and yellows. Bridge So Close – a clear photograph of a concrete footbridge through a park. The rails on the bridge are ocean blue and the details along the sides of the bridge are gold. The trees and grass are lush green, as if it had rained recently.

  1. Edna, Home Sweet Home

Edna grew up in the Presbyterian church and has multiple siblings, children, and grandchildren. She started using Medicare/Medicaid in 1994 when she got sick. Since then she has suffered a minor stroke, defeated cancer twice, and experiences Vertigo regularly. Due to these health concerns, one of her daughters had to quit her second job to take care of her mother, which is when they learned about Paraquad and the Consumer Directed Services (CDS). Now, her daughters are currently employed as CDS attendants and take turns taking care of their mother with things such as getting around and helping her to the restroom. Without Medicaid and CDS, Edna would not be able to live in her own home and do art, which she does often to keep busy.

Artist Statement:

This piece shows how unhappy I was in the nursing home and how happy I am now that I can live at home with the help of Medicaid services.

Image Description: Ink and pencil drawing depicting two scenes. The scene on the left is of a woman in a nursing home fighting two employees. The scene on the right is a woman in her home, working on a sewing project while her feet soak and someone washes her hair. In the background there is a fireplace and a sign that says home sweet home. There is a path and a body of water separating the two scenes, and there is a sunset in the background.

  1. Charles, Untitled

Charles has enjoyed art since childhood. Charles enjoys the challenge of using shapes and angles to create the perception of depth and three dimensions in his painting. Charles also enjoys the challenge of repurposing unused every-day items or items found in nature, such as, transforming an old wooden baseball bat or interesting looking branch into a walking stick or transforming seashells into pieces of jewelry.

Image Description: This painting features two cat-like features with green glows around them and intense eyes.  The lower third is gold, and the cats are emerging from it. The background is white with planetary robes in orange, blue, yellow, pink, and green. There are also blue dots resembling stars.

  1. Jimmy, Untitled

Jimmy has been making art since 1st grade. He uses art to live his life and to contemplate and philosophize upon important and sometimes controversial issues. Jimmy likes pretending and using his imagination as he creates heroes, “sheroes”, brains, toilets, feathers and other pencil, ink and watercolor art. “It’s fun pretending to be the characters I create,” Jimmy says. People who view a piece of Jimmy’s art usually are treated to a thought-provoking question or statement to ponder.

Image Description: A colorful abstract painting on watercolor paper. Most of the lines and brush strokes are vertical. There are a few horizontal purple, black, brown, gray and red lines. The virtual lines are many different colors including various shades of blue, green, and brown.

  1. Kelsey, Untitled

Image Description: This painting features a human figure with purple hair and eyes, the face and features are outlined in light blue. The person is wearing a green shirt. The left background is deep purple, and the right background is gold with some green areas.

  1. Larry, Untitled

Image Description: This abstract features horizontal and diagonal brown lines creating diamond shapes. The diamonds are colored in with green, light blue, ocean blue, hot pink, and navy blue in a semi-random pattern. There are also occasional diamonds colored in yellow.

  1. Melelani, Untitled

Melelani is an artist ready to create anywhere, out of anything, at any time. She’s been an artist forever and doesn’t remember a single time in life where she stopped creating. Melelani’s inspiration is found in the entirety of the world around her. She finds beauty in everything. Her art speaks about our everyday surroundings.

Image Description: this is a blue, purple and yellow abstract flower. There is a purple star shaped jewel at the center, and a yellow circle. Extending from the circle are petals of various sizes and shades of blue and purple. There are also yellow petals extending from the center. Blue and yellow jewels sit on the blue and yellow petals. The background is a pattern of dark purple, light purple, and dark blue.

  1. Rose, Abstract 2

Image Description: This abstract has many vertical lines of silver and purple. There are light blue diagonal lines and a few green lines throughout the work.

  1. Luke, Which Path Do You Choose?

Luke is a 26-year-old with Autism, who was approved for Medicaid Originally in June of 2014.  He is currently a student at the University of Missouri – St. Louis and is studying Public Policy with a minor in social work.  On the Weekends He works as a Bagger at Schnucks, a local grocery store.  He is also involved in the St. Louis County Commission on Disabilities.

In 2019, He was part of the 100,000 Purged from Medicaid due to a computer glitch. At the time he also had Food stamps which made him automatically eligible, however the Software used did not allow for the database to cross-reference other assistance programs. Luke Has received targeted case management, job coaching, and employment supports as a result of Medicaid Funding.

Artist Statement:

With Medicaid supports and services, you can be included and a part of your community. We can work and have jobs we choose.  However, when the system fails; people often feel alone, desperate, and isolated. They also wonder how they are going to be able to afford or receive the help they need; this often results in unmet needs for the individual. The only recourse often is through legal action in order to get services when you are told you ineligible for Medicaid health coverage.

Image Description: The center of this piece features a black road that forks to the left. The left of the image has a car, people, and a brown bag with the St. Louis flag and Arch on it the background is white. To the right of the road is textured and has words written in blues browns and magenta. The words are “isolation”, “unmet needs”, “desperate”, “alone”, and “help?”. There is also a drawing of a scale and gavel to represent the legal system.

  1. Brett, DESPVIRING
  2. Brett, N A R U T O
  3. Brett, Goddess
  4. Brett, ELEGY

Brett is a digital creator. He makes music and videos. In his free time if he is not creating, he is having conversations with friends and family, swimming or playing video games. He doesn’t have a favorite game, but he plays a lot of anime games. He also practices martial arts, writes, and builds worlds for his stories. Brett has been using Medicaid for several years, and it pays for his medicines for his multiple disabilities. While medicaid has mostly been helpful his mom, who is a big supporter of Brett’s work and independence, says that they have had some trouble getting basic services like Physical Therapy covered. A few years ago, Brett’s doctor referred him to PT as a step to prevent the need for an invasive surgery, but Medicaid did not want to cover the PT, they would only cover surgery. This was frustrating for both Brett and his mother, as they felt that surgery was unnecessarily invasive. Brett wants the government to make medicaid more accessible to people so everyone can have access to healthcare.

Artist Statement:

I am a multi genre artist, and I like to create music that ranges from heavy to ambient. Often, I use music as therapy to help me get out my emotions.

Audio Description: this exhibit features four songs on repeat. The songs are all electronic ambient music. They rotate through in roughly nine minutes.

Paraquad Receives Mayoral Proclamation at 50th Anniversary Celebration


ST. LOUIS (September 2021) — It’s not every day that an organization gets to celebrate its 50th birthday (a second time), and it’s an honor when the Mayor proclaims it a special day to recognize the occasion!

Jared Boyd, Mayor's Chief of Staff

Last week, St. Louis City Mayor Tishaura Jones issued a proclamation declaring Friday, September 24, 2021, “Paraquad Day in St. Louis.” The Mayor’s Chief of Staff, Jared Boyd, delivered the honor at Paraquad’s Shine the Light Jubilee REDO.

Due to the coronavirus-19 pandemic, Paraquad presented its gala virtually in 2020, the organization’s 50th year. In 2021, Paraquad President Aimee Wehmeier and CEO Jerry Ehrlich decided to call a “redo” and hold

a live, in-person celebration.

The gala raised more than $240,000 to champion equity and independence for people with disabilities through services, partnerships, education and advocacy.

Shine the Jubilee REDO attendees heard stories about the impact Paraquad has in the community, such as how the Stephen A. Orthwein Center at Paraquad provides members such as Don Pokorny with adapted equipment to improve his strength and ultimately increase his independence.

“Thank you to Mayor Jones for honoring Paraquad’s legacy in the community. We’re so glad we could gather our supporters together to celebrate our rich history and the possibilities for the next 50 years,” said Wehmeier.

About Paraquad: Founded in 1970, Paraquad is a leading disability services provider in the St. Louis region. One of the oldest Centers for Independent Living in the country, Paraquad’s mission is to champion equity and independence for people with disabilities through services, partnerships, education and advocacy. A key focus is to make St. Louis more accessible for all people by advocating, building awareness, and delivering comprehensive services.

Cindy Stark Celebrates 30 Years with Paraquad


This summer, Paraquad Accounting Manager Cindy Stark celebrated her 30th anniversary with the organization. Coming to Paraquad just a year after the passage of the Americans with Disabilities Act in 1990, she has been able to witness how the organization has grown in serving St. Louis’s disabled community. She has also seen how the Disability Rights and Independent Living movements have changed society’s perceptions and treatment of people with disabilities

Like some of the other employees at Paraquad who do not live with a disability, Cindy did not know a lot about the disabled community before she began working at the organization, but she was a highly qualified certified accountant and just what Paraquad needed at the time. Back in those days, she says, paychecks were written by hand for a staff of only 30.

Though Cindy didn’t know much about the struggle for disability rights and independent living when she first took  the job, she could not help but be moved by the energy and passion that surrounded her at Paraquad. She was here during eventful years when Max Starkloff, Jim Tuscher and Bill Sheldon were among those leading the organization. Starkloff, left quadriplegic following a car accident at 21, was Paraquad’s Founder and first Executive Director and already a nationally known pioneer in the movement. Tuscher, who became paraplegic in his mid-20s due to a spinal tumor, was Vice President of Public Policy and Missouri’s leader in lobbying for the ADA. He was on the White House lawn when it was signed into law by President George H.W. Bush. And Bill Sheldon, deaf but a skilled lip-reader in three languages, was Director of Deaf and Hard of Hearing Programs who created the first federally funded program of its kind at a Center for Independent Living.

A sentiment that stands out for Cindy is a remark often made by Tuscher. “Let’s get that fire in the belly,” he would say. Cindy says there was a particularly heightened spirit at that time. “People were going to Jefferson City, protesting and chaining themselves up to things. Just being around that and feeling the whole spirit of it was something to experience.”

Cindy is now working for Paraquad’s fourth Executive Director, Jerry Ehrlich. She says that much of what has been fought for has changed for the better and believes the public in general has a higher awareness of the needs of people with disabilities. Nevertheless, she knows that much work is yet to be done to educate the general public and break down the barriers that people with disabilities continue to face. She says we all should be aware that the disabled community is the only minority group that any one of us could suddenly become a member of.

Of the people working at Paraquad, most of whom have a disability, and those with disabilities they serve, she says, “They are simply awesome. Everyone here wants what is best for the participants. A lot of it is about seeing their independence and seeing that people with disabilities can have jobs and do well. They don’t have to live in nursing homes. They can move about and live their lives like everyone else does. To help someone live the best life they can possibly live . . . what better mission could there be?”

Parkinson’s Foundation Awards Grant to Orthwein Center at Paraquad


Parkinson’s Foundation Grants More Than $2.2 Million to Local Communities for Parkinson’s Programs

Paraquad  Awarded $11,050 for Exercise Programs for Those with Parkinson’s Disease

NEW YORK & MIAMI – The Parkinson’s Foundation announced the recipients of more than $2.2 million in community grants for Parkinson’s programs across the country. Community grants support local health, wellness, and educational programs that address unmet needs in the Parkinson’s disease (PD) community. Paraquad, Inc. was awarded $11,050 to help individuals living with Parkinson’s Disease access exercise classes and other resources at the Stephen A. Orthwein Center at Paraquad.

“We are pleased to be able to provide these community grants and to expand programs and resources throughout the Parkinson’s community,” said John L. Lehr, Parkinson’s Foundation president and chief executive officer. “Every one of these grant recipients shares our commitment to making life better for people with Parkinson’s disease.”

The Parkinson’s Foundation awarded grants ranging from a minimum of $5,000 to a maximum of $25,000 per grant application. This year’s grant cycle focused on three areas, including: programs that provide services for diverse and underserved populations, initiatives that reach the newly diagnosed, and programs that address mental health and Parkinson’s. Of the $2.2 million being granted, $1.6 million will help fund essential programs that focus on diverse and underserved Parkinson’s communities.

Paraquad champions equity and independence for people with disabilities through services, partnerships, education, and advocacy. We envision an integrated society free of barriers and discrimination where disability is viewed as a natural part of human diversity. This award will provide ten gym membership scholarships to low-income individuals with Parkinson’s Disease, as well as a special exercise class designed specifically for people with Parkinson’s disease, enabling Paraquad to serve a geographically and a financially under-served population.

Programs funded by the Parkinson’s Foundation community grants also include wellness, dance, music therapy and educational programs that help people with Parkinson’s live better with the disease. These programs will benefit communities in 40 states across the country.

Since 2011, the Parkinson’s Foundation has funded more than 580 community-based programs that help address unmet needs for people with PD. To see the full list of the 2021 community grant recipients, visit

About the Parkinson’s Foundation

The Parkinson’s Foundation makes life better for people with Parkinson’s disease by improving care and advancing research toward a cure. In everything we do, we build on the energy, experience and passion of our global Parkinson’s community. Since 1957, the Parkinson’s Foundation has invested more than $368 million in Parkinson’s research and clinical care.

Connect with us on Parkinson.orgFacebookTwitterInstagram or call (800) 4PD-INFO (473-4636).

About Parkinson’s Disease

Affecting an estimated one million Americans and 10 million worldwide, Parkinson’s disease is the second-most common neurodegenerative disease after Alzheimer’s and is the 14th-leading cause of death in the United States. It is associated with a progressive loss of motor control (e.g., shaking or tremor at rest and lack of facial expression), as well as non-motor symptoms (e.g., depression and anxiety). There is no cure for Parkinson’s and 60,000 new cases are diagnosed each year in the United States alone.

2021 CDS Strategy – Senate


The House Budget Committee failed to restore the cuts to the Consumer Directed Services program last week. The budget will now go to the Senate Appropriations Committee, where there is another opportunity for funding cuts to be restored and for the provider rate to be increased. It is imperative that advocates across the state work together to share a unified message about the importance of CDS and funding the program.

For this round of advocacy we are focusing on social media and phone calls. There are two asks for senators. If your senator is on the Senate Appropriations Committee you will be asking them to create a Senate position to restore the proposed cuts to the CDS program in HB 10 Section 10.810 and to provide a provider rate increase so providers can keep up with the market rate. If your senator is not on the Appropriations Committee you will be asking them to let Senator Hegeman know how important restoring funding to CDS is to constituents.

You can look up your legislator here:

St. Louis City and County Senators

Name – District On Appropriations Committee? Contact Information
Senator Beck – 1 No Phone: 573-751-0220
Twitter: @dougbeck562
Facebook: @DougBeckMO92
Senator May – 4 Yes Phone: 573-751-3599
Twitter: @karlamaymo4
Facebook: @ karla.may.165
Senator Roberts – 5 No Phone: 573-751-4415
Twitter: @robertsforstl
Facebook: @robertsformissouri
Senator Mosley – 13 No Phone: 573-751-2420
Facebook: @angela.mosley.10
Senator Williams – 14 Yes Phone: 573-751-4106
Twitter: @brianwilliamsmo
Facebook: @williamsforsenate14
Senator Koenig – 15 No Phone: 573-751-5568
Twitter: @koenig4mo
Facebook: @andrew.Koenig.7509
Senator Schupp – 24 No Phone: 573-751-9762
Twitter: @jillschupp
Facebook: @jill.schupp.5

Sample Social Media Post:
(To Senators on Appropriations)

@____ I care about CDS. Disabled Missourians need a Senate Position to restore funding to HB 10 Sec. 10.810 and increase the provider rate so people can stay in their homes.

Sample Social Media Post:
(To other Senators)

@____ I care about CDS. Please let Sen. Hegeman know that the proposed cute to CDS in HB 10 Sec. 10.810 need to be restored and the provider rate increased so constituents can stay in their homes.

Sample Call:
(To Senators on Appropriations)

Hi, my name is _____, and I live in ______. I would like to speak with Senator _______’s Legislative Director.

I care about the Consumer Directed Services Program, and wanted to urge the Senator to support a Senate Position to restore the funding and add a rate increase to HB 10 Section 10.810. The house made the terrible decision to keep Governor Parson’s proposed cuts, and now it is up to the Senate Appropriations Committee to reverse the cuts and provide a rate increase to this program that keeps over 30,000 Missourians living independently in their homes. [If you are a CDS Participant or Attendant, use this time to share your story about the positive impact CDS has had on your life]

Sample Call:
(To other Senators)

Hi, my name is _____, and I live in ______. I would like to speak with Senator _______’s Legislative Director.

I care about the Consumer Directed Services Program, and wanted to urge the Senator to let colleagues on the Senate Appropriations Committee know that their constituents support a Senate Position to restore the funding and add a rate increase to HB 10 Section 10.810. The house made the terrible decision to keep Governor Parson’s proposed cuts, and now it is up to the Senate Appropriations Committee to reverse the cuts and provide a rate increase to this program that keeps over 30,000 Missourians living independently in their homes. [If you are a CDS Participant or Attendant, use this time to share your story about the positive impact CDS has had on your life]

URGENT: Proposed CDS Budget Cuts


We have some bad news: The Governor has proposed a SECOND cut to funding the Consumer Directed Services program for Fiscal Year 2022. If the proposed funding cuts are passed it could mean you or someone you love will lose services.

We need your help.

There are several ways you can get involved:

Email – Right Now!

Email your Missouri State Representative and let them know that these proposed cuts could really hurt you. Tell them what would happen if you did not have CDS. What kinds of things would you have to stop doing? Phrases you can use:

    1. “My services will be cut if these cuts pass”
    2. “I am afraid I will have to quit [list some things you do in the community]”
    3. I will have to live in a nursing home because I can not [list some tasks that your attendant helps you with, like cooking, bathing, using the restroom, cleaning] by myself and the only other option for my needs to be met is if I am in a nursing home. I do not want that”

Sample Email – you can customize this to make it personal! The more personal the better!

Dear Representative_________,

My name is ______ and I am a constituent in your district. I am writing today to let you know that I am passionate about the Consumer Directed Services (CDS) Program. Governor Parson has proposed two budget cuts that would devastate the program. Without CDS I will lose my independence. Please encourage Representative Cody Smith to stop the cuts in HB 10, Section 10.810. Missouri has the funds available, especially with the funding from the most recent COVID relief bill. Thank you for your continued support of People with disabilities.



Social Media and Conversations With Friends and Families – Right Now

Share this blog and tell your family and friends how CDS helps you. Ask them to call their state representatives to share the message about the proposed cuts.

Sample post or message to family/friends:

Governor Parson has proposed TWO budget cuts to Consumer Directed Services, the program I use to live independently. Advocates across the state are working together to make sure these cuts don’t happen. Call your Missouri State House Representative between 9:00 AM and 12:00 PM on Monday to let them know that funding for Consumer directed services should not be cut by saying “Please encourage Representative Cody Smith to stop the cuts to Consumer Directed Services in HB 10, Section 10.810”.

Phone Calls – Monday from 9:00 AM – 12:00 PM

Call your Missouri State House Representative on Monday to let them know that funding for Consumer directed services should not be cut.  Phrases you can use during the call stress the importance of blocking these cuts:

  1. “My services will be cut if these cuts pass”
  2. “I am afraid I will have to quit [list some things you do in the community]”
  3. “I will have to live in a nursing home because I can not [list some tasks that your attendant helps you with, like cooking, bathing, using the restroom, cleaning] by myself and the only other option for my needs to be met is if I am in a nursing home. I do not want that”

Sample call script:

My name is ______ and I am a constituent in your district. I am calling today to let the Representative know that Governor Parson has proposed two budget cuts that would devastate the Consumer Directed Services program. I use this program to live independently. Without CDS I will lose my independence. Please encourage Representative Cody Smith to stop the cuts in HB 10, Section 10.810. Missouri has the funds available, especially with the funding from the most recent COVID relief bill. Thank you for your time and willingness to support people with disabilities.

Find your Missouri State Representative here:

Office of Governor Michael L. Parson
P.O. Box 720
Jefferson City, MO 65102
Phone: (573) 751-3222

You can email the Governor’s office via this link:

If you have any questions or need help finding your Representative please call Sarah at 314-289-4277!

2021 St. Louis City Mayoral Election


St. Louis City’s 2121 Mayoral Election is just around the corner!

On March 2nd four candidates will be on the primary ballot; the two winners will run against each other in the April 6th General Election.
The candidates and their top priorities are listed below. More information can be found on each individual’s website.

Lewis Reed

  • Reduce crime and gun violence
  • Support workforce development, small businesses, and job growth
  • Protect homeowners at risk of foreclosure
  • Increase government transparency
  • Protect the environment
  • Protect St. Louis’ unique neighborhoods


  • Committed to equity and inclusion
  • COVID-19 Recovery will be two pronged and focus on the economy and preparedness for future health crisis
  • Community first public safety plan
  • Modernizing City policies and procedures
  • Address income inequality
  • Encourage development in North and South City
  • Champion issues relating to children, youth, and families


  • Violence reduction with a 10 step data driven plan
  • Strengthen St. Louis School system
  • Against Airport privatization
  • Center racial equity
  • Revitalize neighborhoods and reduce vacant property
  • Run City government efficiently and professionally
  • COVID-19 Recovery
  • Economic Development


  • Strengthen public safety by reducing violent crime and improving PR
  • Send more resources to schools
  • Economic Development by reducing violent crime and welcoming businesses
  • Infrastructure development
  • Thoughtful police reform

For information on how to vote in the Municipal Elections visit the St. Louis City Primary Muncipal Election webpage.

Consumer Directed Services Day of Action – February 3, 2021


Your advocacy is needed this Wednesday, February 3rd!

The Missouri House Budget Committee is busy developing our state’s FY2022 budget and we must let them know how important the Consumer Directed Services (CDS) and other personal care programs are to Missourians with disabilities.

We are asking advocates across the state to reach out to House Budget Chair Smith and Vice-Chair Deaton to ask them to include additional funding for CDS providers so Missourians with disabilities and seniors can continue to receive quality personal care services in their own homes and their attendants can receive a living wage for the critical work they do.

Here is how you can reach the legislators making these important budget decisions:

Committee Member Name Twitter Phone Email
Rep. Cody Smith (R) – Chair @cody4mo
Rep. Dirk Deaton (R) – Vice-Chair @dirkedeaton


Here are some sample messages you can use:

Sample Tweet – Consumer:

I use CDS to live in my community. My attendant helps me _______, ___________, & _______. Without them I would not be able to live in my own home or work, and my attendant deserves a living wage. Please increase provider rates.

Sample Tweet – Attendant:

I am an attendant through CDS. I help the individual I work for ______, _______, & _________. I love my job, but I could make more money working less hours at target. Please increase provider rates so I can earn a living wage.

Sample Tweet – Loved One:

Someone I love uses CDS to live independently in their home. I worry about their health & safety if they do not have access to these services. I can not quit my job to help them; please increase the provider rates so they can live in their home.

Sample Email/Phone Script – Consumer:

Good afternoon, Representative:

My name is _____________ and I live in _______________. I am a person with _____disability and I use Consumer Directed Services to live in my home and participate in my community. Without CDS I would not be able to be independent, and I would have to live in a nursing home, which I do not want to do. Please increase the provider rate so that I can continue to live independently. As minimum wage continues to increase it makes it harder for me to keep attendants, as they can earn more money working at Target or Walmart. Please increase the provider rate so that I can continue to receive CDS, live in my home, and pay attendants a living wage.



Sample Email/Phone Script – Attendant

Good afternoon, Representative:

My name is _____________ and I live in _______________. I am a personal care attendant for a person with a significant disability. I assist them with activities of daily living such as using the restroom, bathing, getting dressed and eating meals, among other things. Without personal care attendant services the individual I assist would not be able to live in the community. It is crucial that the provider rate is increased so attendants can be paid a living wage.



Sample Email/Phone Script – Loved One

Good afternoon, Representative:

My name is _______ and I live in ___________. My loved one has a significant disability uses Consumer Directed Services to live independently in the community. I can not afford to quit my job to help them if they do not have an attendant. Please increase the provider rate so that my loved one is able to pay a living wage and continue living in the community.



Missourians with disabilities want to remain independent in their own homes and our state lawmakers need to prioritize this funding.  Let them know how you feel!

If you need any additional information or have questions please contact Sarah Schwegel at Paraquad (314-289-4277 or

Youth to Adult Medicaid Transition Summit


On November 17th, Paraquad hosted a virtual summit to discuss the transition from youth to adult Medicaid services for people with disabilities.  This transition can be challenging and daunting for new college students or young adults entering the workforce. This event provided parents, educators, and students with the information and resources to navigate this change.

Hosts Briana Conley and Sarah Schwegel from Paraquad’s Public Policy and Advocacy department welcomed over 100 attendees and 14 speakers from across the St. Louis area, many of whom offered advice and shared their personal experiences with making the jump from youth to adult Medicaid services. The all-day event was open to the public and featured experts from Paraquad, the Special School District of St. Louis, St. Louis University, Metro Transit, and more. Attendees learned about the application process for adult Medicaid services, supplemental waivers available to people with disabilities, reasonable accommodations for college students with disabilities, transportation services for people with disabilities, and job placement services for recent high school or college graduates. Sarah Schwegel and Raven McFadden of Paraquad shared their experiences as college students transitioning to adult Medicaid services and living independently on campus.

Attendees received an informational packet with resources and additional information about Medicaid and the various services available to young adults with disabilities and their parents to ensure a smooth transition.

Voter Education


Paraquad’s Public Policy & Advocacy Department has been busy spreading the word across the state about how and why to make sure everyone is able to vote and be heard this November.  If you haven’t had the chance to attend one of our trainings, no worries!  Public Policy & Advocacy Specialist Sarah Schwegel recorded a training to share with you.

Follow the link below to watch the video, and feel free to email with any questions!

Breaking Down Barriers: Ensuring People with Disabilities Can Exercise Their Right to VOTE

If you would like to attend a live presentation, check out our schedule, or contact us to schedule an event for your organization or group!