Mapping the Gap: Kansas health care stories

“My daughter is a wonderful 15-year old who loves her life — her family, friends, school, and all the fun things she gets to do in her community. She also has a rare genetic syndrome. She has needed countless hours of therapy (behavioral, speech, occupational, physical) to achieve the ability to communicate, use her hands and body effectively, and manage herself well enough to learn in a classroom. She has epilepsy that has required extensive trial and error with medications. It is impossible to imagine her achieving and thriving at the level she is now without very good health care – including a combination of employer-provided health care and crucially, Medicaid. She will rely on Medicaid for home services for the rest of her life. I am extremely worried that the proposed cuts to Medicaid will affect her future services and health care.

“I have been living with Multiple Sclerosis since I was 14 years old. It took five or more years to get a diagnosis and through that and since I have gone through times in my life that I have had medical insurance through jobs and other times where I have not had that access. My medical needs are bigger and smaller depending on what my disease process is doing. But this is a forever thing and I hope that not having access to doctors, MRIs, medications, etc. doesn’t cause me to be unable to have a quality of life that I sometimes struggle with.”

“I’ve always had medical assistance from the government. It was the only consistent in my childhood. It kept us well. When I turned 19 I lost my insurance so I just hoped to never get sick. I constantly had to plan and ignore pain.”

“I’ve both been secure in my healthcare coverage and have had extended periods of time I literally prayed I’d stay healthy. At one point, I remember my Dad telling me ‘If you get seriously injured, honey, make sure it’s when you’re in your car.’ My car insurance at the time would cover medical expenses better than my health coverage would have. Being largely self employed for good chunks of my adult life, the ACA was LITERALLY a lifesaver for me. It kept me able to do annual check-ups and basic care. It’s not perfect – but it’s so much better than the alternative.

My piece symbolizes my life/career path, with the more solid areas being where I had ‘decent’ health coverage, and the sheer ones, not so much. The red symbolizes my happiness journey, the yellow confusion and fear. The large heart is my spiritual center and my gratitude. I always had ‘someone’ looking out for me, and I will always be SO grateful for that.”

“I worked as a counselor at a middle school when the funding for my job was ended. I was scheduled for hip replacement over the summer so I paid for COBRA for 3 months. The gauze in my square represents the money that quickly went through my hands but I was grateful to have that option. The hearts symbolize the job I loved and the kids I left behind. Everyone should have access to health care!!”

“I am a resident of Mission, KS. I am on the autism spectrum. Ever since I was young I have struggled with a lot of issues. I am currently living independently with an organization called ‘The Mission Project’ which is for helping people with autism or other disabilities. Medicaid is very important to me because it helps me get the coverage and the support that I need for when I’m sick or struggling, or for when I’m hurt. It is extremely important that the state of Kansas expands Medicaid. Medicaid cuts would mean no more healthcare for me or for any of my friends, especially with disabilities. I deserve to live a healthy life and to enjoy living independently. No single Kansan should have to live through serious cuts to Medicaid. If these cuts do happen, it will be very devastating to everyone. Let’s all work very hard to help Kansans live a healthier life.”

“My health insurance coverage story is like patchwork, like a quilt, where each era of my life offered coverage from parents or an employer. One exception was when I was a widow and unemployed. That required buying very expensive insurance, and only my late husband’s life insurance policy allowed the resources to sustain monthly payments of nearly $1,000 [per month] for a year or so. It was as expensive as my mortgage. When I got on Medicare and added supplemental coverage, my patchwork simplified. The blue patch with red and stars represents this U.S. government-funded security!”

“I was born on third base. Making it ‘home’ to ‘score’ seemed inevitable. And yet in spite of so much advantage, I found myself without healthcare many times over my adult life. Two notable exceptions were pregnancies when I had coverage for 9 months each. Now I have health insurance through my employer and have accessed life-changing treatments.”

“I had Medicaid for my first pregnancy at age 19. At 23 I was married and had insurance through my husband’s employment, but did not have maternal coverage. We paid 100% out of pocket for my obstetrical and delivery fees. After the ACA I had two more pregnancies that were covered with my husband’s insurance because of the insurance coverage.

My textile shows the Medicaid coverage for my first pregnancy, the middle shows the lack of coverage, and finally the full coverage later on.”

“I’ve not accessed health care (except vaccines during COVID and tetanus for work, provided by work) and only gained healthcare coverage in the past 6 – 10 years. My story is one of non-access, so mostly blank, with 3 areas of coverage – before becoming an adult, 4 years during a job-job and grad school (only because of a union!) and then for the past 10 having some Marketplace coverage (spotty)…”

“My access to healthcare struggle began shortly after I was diagnosed with MS [Multiple Sclerosis] in 2009. The financial burdens of pharmaceutical and medical items that had been recommended were out of reach for me for quite some time. I am fortunate and thankful to be able to have access to what I need now, but I will try to fight for an end to the maddening stress, panic, and fear that it holds for others in that position.”

“I picked 2 symbols of health care because you have such a gap in services in the state, so that’s why the symbols are in the eastern part of the state. Also the band aid is a metaphor for how we put band aids on the system but no systemic change like Medicaid expansion. The butterflies are a symbol of hope for change. The star and sunflower are what I think of when I think of Kansas. The blue lace is my fundamental belief…for change — eventually. In my fabric piece, I used knots to demonstrate how convoluted it is to get help and the head to have heart for those in need.”

“I have been fortunate to have insurance but both of my sisters have been without coverage at various times in their lives. My sister was diagnosed with breast cancer right when she lost her job and had to have $10,000 to start her chemo. Without help from our mother and Medicaid she would not have been able to afford her treatments. My other sister’s daughter was a victim of the opioid epidemic and has twins. They are terrified they will now lose Medicaid after the changes recently passed by Congress. If that would happen they would be homeless.”

“For most of my life I was covered by my parent’s insurance. Now at the risk of unemployment I may not have coverage, especially if I do not have a way to cover insulin. The more bold solid [fabric] shows how over time my coverage got thin like the low-opacity fabric.”

“I am very fortunate I have always had good health insurance through the places I’ve been employed. And am now — at least for now — covered by Medicare. I worked in health care and saw many people who did not have the coverage available that I did. I have also volunteered signing people up for Operation Holiday and am always saddened by the number of people who desperately need health care.”

“As a former worker in health care I had decent coverage until I retired. Now I am on Medicare and am doing alright. But I know too many people who have to struggle for services. Years of paperwork, seeing multiple doctors, disappointments, frustration — but nowhere to turn. Two of these people were veterans suffering from gunshot wounds and PTSD.”

“I have been blessed to have had very good health insurance from birth. My parents worked for the State of Kansas, and I for the federal government. Until I met my wife, who was in the Obamacare portal, I was unaware of the stressors of not being covered. The world is messy, and colorful, and wonderful — I hope these are all conveyed in my piece!”

“I have always been lucky enough to either have coverage or have financial support when I could not afford coverage. But I have had many friends struggle to qualify for coverage. Therefore I want to advocate and raise more awareness, because healthcare is essential for all!”