Disability Rights Legislative Day

By

On Wednesday March 9, hundreds of people with disabilities and their advocates will join a rally marking the 21st Annual “Disability Rights Legislative Day”.  The rally has historically been held in person at the state capitol – this year’s event will be hybrid, both in person and virtual via YouTube.

Key elected officials including the Governor and State Treasurer, as well as legislators and self-advocates will speak at the 11 a.m. rally around the theme “Power in Unity”.  The Governor will proclaim March as Developmental Disabilities Awareness Month in the State of Missouri.

Speakers and elected officials will address legislation that supports disability rights and inclusion of people with disabilities in their communities – in life, in work, in education. Self-Advocates and advocates from across the state will have the opportunity to share their stories and educate legislators on the issues that matter to them most.

The rally is co-sponsored by a coalition of disability-related organizations from around the state. It was funded through a grant by the Missouri Developmental Disabilities Council (MODDC).

More information is available here: https://drld.org/

ACTION REQUIRED: CONTACT MEMBERS OF HOUSE SUBCOMMITTEE ON APPROPRIATIONS-HEALTH, MENTAL HEALTH, AND SOCIAL SERVICES

By

Consumer Directed Services Funding Increase

Your voice is needed!

Governor Parson has released his fiscal year 2023 budget.  Now it is time for the Missouri Legislature to begin their work on the budget. we must let our legislators know how important the Consumer Directed Services  (CDS) are to Missourians with disabilities.

Last year, despite the governor’s recommended cuts to CDS, the Missouri Legislature passed a 5.29% increase in funding for the program.  As we know this increase was ultimately vetoed by the Governor. This is unacceptable!  The CDS program provides critical personal care services to nearly 40,000 individuals with disabilities throughout Missouri.  These services allow people to remain safe, healthy, and independent in their own homes.

We are asking advocates across the state to reach out to members of the House Subcommittee on Appropriations-Health, Mental Health, and Social Services to ask them to include additional funding for CDS providers in the  FY23 budget.  This funding is necessary for Missourians with disabilities and seniors to continue to receive quality personal care services in their own homes and for their attendants to receive a living wage for the important work they do.

Here are some sample messages you can use:

Sample Email/Phone/Letter Script – Consumer:

Good afternoon/Dear Representative,

My name is _____________ and I live in _______________. I am a person with a 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 a retail store. Please increase the provider rate so that I can continue to receive CDS, live in my home, and pay attendants a living wage.

Warmly,

________

Sample Email/Phone/Letter Script – Attendant:

Good afternoon/Dear 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. I enjoy my job, but I do not feel that the wage I am paid is adequate for the service I provide.  It is crucial that the provider rate is increased so attendants, like myself, can be paid a living wage.

Warmly,

___________

Sample Email/Phone/Letter Script – Loved One:

Good afternoon/Dear Representative,

My name is _______ and I live in ___________. My loved one has a significant disability and 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.

Warmly,

________

Sample Tweet/Facebook Post – Consumer:

I use CDS to live in my community. My attendant helps me _______, ___________, and _______. 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 for CDS. #AdvocateForCDS #MoLeg

Sample Tweet/Facebook Post – Attendant:

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

Sample Tweet/Facebook Post – Loved One:

Someone I love uses CDS to live independently in their home. I worry about their health and safety if they do not have access to these services. I cannot quit my job to help them; please increase the provider rates so they can live in their home and the attendants that work for them can be paid a living wage. #AdvocateForCDS #MoLeg

Missourians with disabilities want to remain independent in their own homes and the Missouri Legislature needs to prioritize this funding.  Let them know how you feel!

Assistive Technology at Paraquad

By

Recently, we hosted Scout Merry from the Missouri Assistive Technology Council for a training on the assistive technology devices we have available for members of the community to try before buying. Between the accessible apartment and computer lab we have several high- and low-tech devices that can make activities of daily living and computer access easier.

Not only does the apartment showcase accessible home modifications, but it also has tools you can test in the kitchen, bedroom, and living area. Kitchen tools include large, handled silverware, nonslip grips, and adaptive knives. Tools you can try in the bedroom area include adaptive writing and reading tools, and a track lift. Some of our writing tools include pens and pencils with different griping devices, a recording pen. Accessible reading tools include a C-Pen, and a magnifier.

The computer lab has a wide variety of keyboards, mice, trackballs, and software you can sample. You can try Dragon Dictate a program that allows you to control your computer with your voice or JAWS a tool that reads the screen to you.

Different tools can be useful for people with many disabilities. Some equipment that works for your friend with a similar disability might not work for you, so as you are searching for new assistive technology have an open mind, ask lots of questions, and don’t be afraid to try something new.

ID: white desk with writing tools and a magnifier.

ID: table with many different magnifiers and adaptive utensils.

ID: four different kinds of mice/trackballs

ACTION REQUIRED: CONTACT GOVERNOR PARSON

By

ACTION REQUIRED: CONTACT GOVERNOR PARSON

Consumer Directed Services Funding Increase

Dear Advocate,

Your voice is needed!

Governor Parson will be releasing his fiscal year 2023 budget in the next few months and we must let him know how important the Consumer Directed Services  (CDS) are to Missourians with disabilities.

Last year, Governor Parson recommended a total of a 7.5% decrease in funding for this vital program.  This is unacceptable!  The CDS program provides critical personal care services to nearly 40,000 individuals with disabilities throughout Missouri.  These services allow people to remain safe, healthy, and independent in their own homes.

We are asking Advocates across the state to reach out to Governor Parson to ask him to include additional funding for CDS providers in his FY23 budget.  This funding is necessary for  Missourians with disabilities and seniors to continue to receive quality personal care services in their own homes and their attendants can receive a living wage for the important work they do.

Here is how you can contact Governor Parson:

Phone: (573) 751-3222

Email: https://governor.mo.gov/contact-us

Mail:
Office of Governor Michael L.Parson
P.O. Box 720
Jefferson City, MO 65102

Facebook: https://www.facebook.com/GovMikeParson/

Twitter: https://twitter.com/GovParsonMO

Sample Email/Phone/Letter Script – Consumer:

Good afternoon/Dear, Governor Parson:

My name is _____________ and I live in _______________. I am a person with a 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. My attendants deserve a living wage, as they help me with difficult personal tasks. Please increase the provider rate so that I can continue to receive CDS, live in my home, and pay attendants a living wage.

Warmly,

________

Sample Email/Phone/Letter  Script – Attendant

Good afternoon/Dear, Governor Parson:

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. I enjoy my job, but I do not feel that the wage I am paid is adequate for the service I provide.  It is crucial that the provider rate is increased so attendants, like myself, can be paid a living wage.

Warmly,

___________

Sample Email/Phone/Letter  Script – Loved One

Good afternoon/Dear  Governor Parson:

My name is _______ and I live in ___________. My loved one has a significant disability and 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.

Warmly,

________

Sample Tweet/Facebook Post – 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 for CDS.

Sample Tweet/Facebook Post – 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. Pleas increase provider rates so I can earn a living wage.

Sample Tweet/Facebook Post – 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 and the attendants that work for them can be paid a living wage.

Missourians with disabilities want to remain independent in their own homes and Governor Parson needs to prioritize this funding.  Let him know how you feel!

If you need any additional information or have questions, please contact Briana Conley at Paraquad (314.289.4304 or bconley@paraquad.org).

Best,
Paraquad Public Policy and Advocacy Team

Paraquad Adds Three to Board

By

Paraquad Adds Three to Board

ST. LOUIS (November 2021) — Paraquad is pleased to welcome three new members to our Board of Directors: JoAnn Lam, Joseph Bayer, Jr. and Michelle Wieneke. All three began their service in October.

Joe Bayer Jr. Man in grey suit and blue shirt with yellow tie.

After earning a BA in Communication from Truman State University, Joe Bayer, Jr. entered the “real world” working for Enterprise Rent-A-Car. Over the course of 10 years, he went from an entry-level position to a management trainee, where he was “literally cleaning cars while in a business suit” to area rental manager for the mid-county area of St. Louis County. He eventually moved on to First Integrity Mortgage Services as Vice President of Business Development before becoming Executive Vice President.

He held the President position for the Mortgage Bankers’ Association of St. Louis in 2018 and currently sits on the Board of Governors for the MO Mortgage Bankers’ Association.

JoAnn Lam. Woman in red shirt.

JoAnn Lam has been a community advocate and an organizer for the disabled community for over two decades. Her projects in

clude leading a local support group, co-founding and leading a local advocacy group, coordinating with local governments to update ordinances and policies to align with state legislation and the ADA, advocating at a local and state level, and training others to self-advocate.

Prior to becoming a community advocate and organizer, Lam held a variety of positions in various fields, including as a teacher in Missouri and in Europe and as a social worker.

Michelle Wieneke continues a ten-year partnership between Regions Bank and Paraquad. Michelle began her career with Regions Bank in 1989. She started as a teller and in 1998 became a Teller Supervisor. In 2000, she transferred to the Trust Department as an administrative assistant.Michelle L. Wieneke. Woman in dark suit.

After graduating from Cannon Trust School in 2004, she was promoted to Account Administrator. Weineke handles the majority of the Special Needs Trusts, Guardianships and the VA accounts for the Illinois and Missouri offices. Michelle was a 2006 Regions Morgan Keegan Trust Ace Award winner for superior client service and a member of the 2012 Regions Chairman’s Club.

“We’re thankful for our committed board member volunteers who bring diverse perspectives and wonderful energy to our organization,” said Aimee Wehmeier, Paraquad President.

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. As a Center for Independent Living, Paraquad’s Board of Directors, as well as its staff, is comprised of a majority (more than half) of people with disabilities.

Employee Spotlight – Kiland Sampa

By

At the age of 15, Kiland Sampa was a strong, athletic student at Parkway North High School, and a championship tennis player who competed in tournaments throughout the country. He was following a family tradition begun by his grandmother. His father and his mother played competitive tennis, and his uncle had earned an athletic scholarship to college.

One evening in 2013, Kiland was at his hotel after playing in a tournament in Indianapolis and decided to go for a swim in the pool. The pool was shallower than he expected, and when he dove in, he broke his neck and crushed his spinal cord. A friend was able to pull him out of the pool and save him from drowning, but Kiland was paralyzed from the waist down.

Today, at 23 and eight years since acquiring a disability, Kiland has adapted his passion for athletics by playing wheelchair tennis and preparing to compete in the 2024 Paralympics in Paris as a member of the wheelchair rugby team. But he is also active in ways that help others who’ve experienced life-altering injuries. He does this by guiding them through the physical and mental challenge of living with a disability.

Kiland knows what’s ahead for them. After his accident, Kiland spent five months at Ranken Jordan Pediatric Bridge Hospital as an inpatient and then two years as an outpatient. He remembers the shock of knowing he could never reach his goal of winning future tournaments for which he’d practiced so long, and the initial depression that haunted him. But the physical and recreational therapists at Ranken Jordan changed that. In addition to the daily physical therapy he received, he was treated as part of a caring family who made him feel at home. Over time, he learned how to embrace a new life with a disability. Much of this was done, he said, by being kept busy, even when he wasn’t in physical therapy sessions.

“The therapists at Ranken Jordan had a huge impact on me. I was seen as being a member of their family and saw how people with disabilities could benefit from their help.” He says his therapist treated him like a son or a best friend.

“Physical therapy helps us become strong and independent, but it is hard. I didn’t like therapy itself, but my therapists made me like coming to see them.”

Kiland continues to keep himself busy by helping others who have disabilities. While attending school to become a recreational therapist, Kiland works part-time at Paraquad as a Peer Specialist.

Through the Peer Mentor program, Kiland matches people with disabilities who are seeking guidance with volunteer mentors who have similar disabilities. It’s often hard for people to accept their disabilities, and they may experience feelings of isolation, sadness, and a lack of hope. Taking things one step at a time, the mentors help those participating in the program to set personal goals and achieve them.

“When you watch them advance their abilities and achieve each goal, it is an amazing thing to see,” he says.

Kiland also volunteers at Ranken Jordan, the Disabled Athletic Sports Association (DASA), and Washington University School of Medicine.

While the people he helps at Paraquad are adults, at Ranken Jordan he works with children, including a boy of 10 years of age who was injured in a car accident that had killed both of his parents. He says that children also struggle with trauma and adjusting to living with a disability.

“A lot of kids think they can’t do things,” Kiland explains.

Kiland says that living with a disability is never easy. He knows firsthand the frustration, depression, and physical exertion that comes with getting through the day. And he shares those insights with the participants he serves at Paraquad. But in the end, he chooses a positive perspective.

“Why be sad and depressed when you have the ability to live life and be happy?”

Navigating the System Exhibit Guide

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.

Paraquad Receives Mayoral Proclamation at 50th Anniversary Celebration

By

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

By

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

By

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 Parkinson.org/CommunityGrants.

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.