By

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.

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