“Medicaid provides me nursing to care for my trach, ventilator and g-tube while I attend school and my Mom and Dad work.”
– Leo
“Pay for my kids medicine and his caregivers”
– Meagan
“Medicaid pays for my 25 year old autistic son to attend Community Day Services. Without this financial help my son would not be able attend. It is CRUCIAL that he has a routine. Without this his behavior would be terrible and it would affect his and our family’s live horribly. He is not independent enough to work. Cutting off Medicaid would harm him. I hope President Trump comes to realize the damage that would be done if he cuts it off.”
– Beth
“Alex genetic disability requires many doctors visits and tests and medication. She also requires physical therapy and occupational therapy. Medicaid is her health insurance for these things. Due to her disability she can only work a little bit not enough to pay insurance costs or her bills. I am her mom plus caregiver. She relies on me for help with basic needs and she can’t drive, so I have to get her to work and appointments. She will never be able to live alone. She will always require a caregiver. Medicaid provides caregivers. In the future Medicaid will provide day programs, when I am not physically able to care for her and her brother becomes her guardian. Medicaid provides for needs now, so she can have a good life and will provide for her needs in the future, as a parent of a child with a disability this relieves our stress. As a parent we won’t live forever and it gives us peace of mind to know she has these services to live a fulfilling life!”
– Brian and Janice
“Medicaid helps me take care of my daughter with a disability. It costs over $350,00 per person per year in an institution. Medicaid provides a much better quality of life for people in the community for 7% of that budget. My daughter can work in the community because she lives in the community. She is able to enjoy the hobbies she loves, attend college to pursue a degree in dance, and maybe, thanks to Medicaid’s support, maybe even live independently.”
-Diane and Erin
“My son suffered a brain injury at birth. He is gtube dependent and teach/vent dependent. Medicaid covers the copay costs and items necessary that aren’t covered by private insurance, Medicaid covers his in home nursing that allows him to attend school and access our community. The Medicaid waiver program has granted him the means to enter his home, family vehicle and a home generator to ensure his life sustaining equipment can always run and to help maintain his environment. With out Medicaid, my son would have to live in a hospital.”
-Neomi
“My medically complex son was born with Wolf Hirschhorn Syndrome. He has required a tremendous amount of medical care since birth that we were not planned for. We were initially denied Medicaid and the final burden for resources he needs were a lot for a family to handle with only one parent being able to work while the other has to provide care for him. As care became harder, we were approved for Medicaid. Medicaid picks up the expenses our primary insurance does not cover. It has also allowed us to have in home nursing which is necessary for him to be able to attend school and allow myself a little bit of a break. Cade has a very serious case of seizures that can become deadly quickly which is why he needs non stop supervision. He also has stage 3 kidney disease, heart defects, cleft palate which causes feeding issues therefore he is gtube dependent, severe apnea requiring cpap and oxygen, immune deficiency requiring immune therapy on a weekly basis, many hospital stays for seizures and illness. He has around 15 specialty doctors at our children’s hospital. He is 7 years old, nonverbal and can not walk alone. He works hard daily to continue his development through therapies.”
– Casandra
“I adopted two medically fragile children from foster care. Both have Medicaid as their primary and only insurance. They both receive services through the Division of Specialized Care for Children in Illinois. My daughter has a MFTD waiver. They require 19 daily prescription medications. My son requires a nightly injection that is $4000 a month. My daughter requires multiple pieces of expensive medical equipment. I would never have been able to afford to adopt them with all these needs without knowing they would be able to receive Medicaid. I am so proud of how much they have accomplished thanks to the therapies Medicaid has provided. Medicaid is a vital, life saving program for thousands of children like mine. We need to fight to keep Medicaid accessible for all who need it.”
-Debra
“Medicaid provides my supplemental health/medical insurance. In addition, Medicaid funding provides services and supports that help me reach my employment and independence goals. With Medicaid I have the opportunity to live with dignity and purpose.”
-Gayle and Kelly
“Provide my special needs daughter and education out of state as her autism & developmental disabilities are so severe that no public school or therapeutic school in state can handle her. Rachel is a bright sweet young woman who cannot be safe in her home. She’s quite mobile and developmentally stuck at 3 years old. She towers over me and is quite strong. Her brothers are both on the spectrum and caregiving her at home causes danger to myself, her veteran dad and her brothers. Our school district depends on federal funds to send her to a private school that can keep her safe.”
– Elizabeth
“Medicaid helps my son receive services that are imperative to his daily living without interruption. It allows our family to operate on a stable foundation to make sure our sons care is fully supported while being a mother to my other children as well.”
-Tessa
“My daughter Caity was born with Down Syndrome. She has a trache and vent to help her breathe and a g-button to help her eat. We use medicaid to cover the costs our insurance doesn’t cover for her medical needs. As well my daughter needs nursing to go to school and help her live day to day. Without Medicaid Caity would not be living and would not be able to go to school.”
-Dyan
“Medicaid allows me to keep Amanda home. It also provides a piece of mind knowing that we always have extra help covering her astronomical medical costs. Amanda has Spina Bifida and other anomalies and relies on life sustaining equipment such as 24/7 oxygen, tube feeds and ventilator to sleep, without Medicaid the copay for these items would be so costly our family would not be able to afford to survive. Medicaid has not only allowed us to keep Amanda home so we can care for her I am sure because of this Amanda is still alive. I am confident the care she receives at home far surpasses the care she would receive at a care facility, (if we could find one that could provide for her high level of needs), or she would have to be hospitalized putting her at risk for major complications due to infections and other ailments that are picked up in a hospital base setting. I am paid as Amanda’s caregiver thanks to Medicaid this allows me to provide the best care possible for Amanda to give her the best quality of life possible.”
– Tommi
“My son has a rare genetic syndrome, Ayme-Grippe, with many medical complications. He has a tracheostomy tube, a gastronomy tube, cochlear implants, contact lenses, and seizures, to name a few. Medicaid supplements our private insurance and allows us to keep nursing hours staffed, our prescriptions filled, and all necessary tests and interventions performed, which in turn, keeps Beau out of the hospital or an institution, and home where he belongs. Along with the host of medical features, Beau also has the warmest smile, the best twinkle in his eyes, and the softest touch when he holds your hand. He deserves everything this world has to offer, and Medicaid helps us give it to him.”
– Sarah
“Care for my disabled child at home. If we did not have Medicaid our daughter would be living in a hospital. We use in home nursing services to help care for her. Medicaid has also provided us with medical supplies and equipment to ensure we give her adequate care and to keep her safe. Miracle has a Trach, feeding tube, central line and is TPN dependent. She is also type 1 diabetic and depends on her medications and blood sugar monitoring devices and supplies.”
– Rebekah
“Medicaid helps me send my son to an adult day program that helps be an active member in our community It supplies a safe place for him.”
– Jane
“It allows me to work while my adult son attends a day program where he gets social interaction and life skills.”
– Jill
–Melanie and Gabriella
“Keep my son with complex medical needs at home (with home nursing) and out of the hospital/long term care.”
– Ally
“Keeping my son at home. Medicaid provides nursing care to give us a mental break and prevent caregiver burnout. They also help us get him to his many appointments and therapies. If we lose Medicaid we would have to put my son(14yrs old) in a hospital or turn him over to the state to be put in a nursing home. We can’t afford monthly feeding enteral supplies. That alone is $8,500 a month. We would have to file bankruptcy. Most private insurance companies won’t pay for feeding supplies. There is already a nursing shortage and he needs someone by his side 24/7 which can’t happen in a hospital or nursing home.”
– Lindsay
“My child has Septo Optic Dysplasia, and cognitive delay. He has a tracheotomy tube to breathe and a feeding tube to eat. He is Nonmobile and requires 24/7 care. Medicaid provides in home nursing for his care, otherwise he would need to live in a long term facility. Medicaid is vital to our family staying together as a family.”
– Mary
“Participate in day programs and activities that give me meaningful life and community experiences.”
– Maximilian
“Allow Michelle to live at home with nursing care. She has a central line, trach, ventilator and gtube. If not for Medicaid she would live in the hospital.”
– Mary and Michelle
“Care for my medically complex child at home. Medicaid helps me acquire critical supplies my son requires to stay healthy such as tracheostomy, g-tube, and daily care supplies. It also helps us receive medications such as antiepileptic medications. This is just a fraction on ways Medicaid supports the quality of life for my child.”
– Erika
“Medicaid has been a life line for our family for the past two years. My daughter has a rare condition called Aicardi Syndrome. She suffers from a whole slew of medical issues. Two years ago her health took a nose dive and we were faced with an incredibly hard decision. Due to her being in the hospital frequently and needing 24/7 medical care we were forced to have me quit my job as a nurse to become her nurse at home. We barely made it by with two incomes let alone one. I found the MFTD waiver through DSCC and we found a way to care for our daughter like she deserves. Medicaid pays for nursing that our primary insurance does not cover. The state allows me to be paid as her nurse so we are able to financial pay for our daily needs, home, and wheelchair van to transport our daughter. It helps to pay for all the supplies and monthly fees associated with her equipment she needs to help her eat and breathe. With Medicaid funding we were able to get a generator for our home so when the electricity is out (we are rural and it can take many hours to restore) we do not have to take her to the hospital immediately to get the equipment she needs to live. We were able to fund a wheelchair accessible van to transport her safely. Without Medicaid we would not have access to medications, equipment, supplies, and nursing. These are the things that keep my daughter alive.”
– Tara
“I have a trach, and a g-tube. I am non mobile and non verbal. I use an eye gaze device to communicate. Home Nursing makes it possible for me to go to school!”
– Christina and Emma
“Keep my daughter at home and not in an institution. She has a tracheostomy, ventilator, suction machine, airway clearance vest, Hoyer lift wheel chair, feeding tube”
– Christina
“Give support to my child so we can work and earn a living to care for our family. Medicaid’s also allows her to attend a day program when she exits school in 2 years so we can work and earn a living. Selena has severe epilepsy and intellectual abilities that prohibit her from being able to work, speak or care for herself.”
– Jenni
“Get all of the supplies I need to help me eat and breathe at home. It also helps me get the equipment I need to make me stronger and work on my standing. Medicaid pays for my therapists that I love that teach me new ways to move around in my own way and interact with my siblings and friends.”
– Alaina and Ayla
“Medicaid helps me keep my loved one at home, as healthy and connected to his family and community as he can be. Medicaid helps me provide him with the doctors, therapists, and medical equipment that he needs to grow and develop. Without Medicaid, my son would not be here.”
– Yvonne
“My daughter was born with several congenital abnormalities and has no unifying diagnosis. She is a rare medical case we still have no understanding for without Medicaid programs and grants she would not be able to recieve her at home nursing or care from her many physicians. Graylinn would not be alive today or live in her home with her family if it wasn’t for her Medicaid programs providing her with in home nursing services. She would be living in the hospital. She would not be able to have life experiences such as attending her older sisters sporting events and family holidays.”
– Tifanny
“Take care of my child. My child is on seizure medications to help control seizures. A ventilator to help with breathing and keeping lungs inflated. A feeding tube and formulas and has many health issues. Medicaid helps with all of those things and in home nursing so that my child does not have to be in an institution. Many of the things needed are very costly. If it wasn’t for the help, our family would not be able to provide these things and our child would no longer exists. Please consider all that are effected by these decisions.”
– Sarah
“My daughter Julia has partial paralysis, is ventilator and g tube dependent. We use nursing so she can go to our neighborhood school and live her life.”
– Katy
“I’m the mother of a girl with special needs. With the Medicaid We Get to go to doctors visits. We get Medicine that my family needs. Without the help of Medicaid I would not be able to go to my doctor or get the medicine or services that I need. Like psychological help for my depression that has help the whole family. I won’t be able to Get the audiologist services or physical therapy my 9 year old son needs.”
– Yanet
“Take care of my daughter, who is 11 years old and medically fragile. Medicaid paid for her specialists, hospital visits, and medical services so she doesn’t live in a hospital — which would be catastrophically more expensive. Because of this, she thrives and I’m able to work and serve my community.”
– Andrea
“Medicaid helps me keep my daughter at home. They help pay for all her medical supplies that’s keeps her breathing. She has a ventilator and tracheostomy along with a g-tube.”
– Karina
“Our son Andrew who goes by Drew is 29 years old has Down syndrome. Medicaid is his health insurance provider. He has a permanent pacemaker and it work 80 % of the time causing his battery to drain quickly. Without his pacemaker he would at best have a very poor even more disabled quality of life at worst, he would die. He has a congenital heart defect that requires ongoing monitoring as well as thyroid disease also required monitoring. He is employed part time but would not qualify for health benefits, nor would he be able to afford them Our son was pulled from the PUNS list at age 25 and that pays us as his parents and legal guardians to provide his care at home rather than placing him in a group home. Taking away that would take away 1/2 of our income.”
– Denise
“To keep my son at home, it keeps him on his long list of medications, tpn and lipids, j tube feeds and more. It allows use to have home care nurses and keeps him out of the hospital.”
– Rachelle
“Provides nursing allows which allows me to live at home and my parents to work. It also covers all my medical appointments and therapies, and my gastronomy tube, formula and other medical supplies.”
– Lindsey
“Pay for community day program services for my 23yr old son who has autism and intellectual disability. Aidan loves his day program and going there is fulfilling and gives him purpose each day. At the day program Aidan is given the opportunity to learn, socialize, gain new skills and be a meaningful part of his community. We are grateful the Medicaid waiver funding exists to keep these programs functioning for our most vulnerable loved ones like my son. Loosing Medicaid funding would be devastating to Aidan and many others like him.”
– Mary Anne
“Provide care for my son. So I can work and provide for our family. So Colin has health care and the medication he needs for his epilepsy. Provide personal support workers that work with him daily. Behavioral therapy.”
– Robin
“Without medicaid funding, my day program would not be able to operate, my tuition would be unobtainable, and my family and I would be stuck at home with no options for my current daily life or my future.”
– Suzanne
“Medicaid is the reason that my husband and I are able to care for our son at home. It provides his food . He is nourished through a G-tube, it provides tracheotomy supplies. It provides oxygen to help him breathe, a nebulizer , chest therapy and other pieces of equipment that without these he would have to be hospitalized. The cost of hospitalization is very expensive. Medicaid helped to provide the vertical lift to get my son in and out our house for his appointments. It helps to cover nursing expenses to care and help my husband and I care for him in our home. It covers the numerous medications that are necessary to keep our son alive and out of the hospital.”
– Drew
“Medicaid helps me to care for my daughter at home, where she belongs. It provides the critical support Ava needs—ventilator care, nursing, and medical supplies—so she can grow, learn, and thrive with her family. Without Medicaid and the MFTD waiver, keeping Ava home wouldn’t be possible. It allows us to give her every opportunity to reach her full potential while keeping our family together. Medicaid isn’t just a program—it’s a lifeline for families like ours.”
– Jaclyn
“My daughter Rachel passed away in June of 2023. But she received a Medicaid waiver called home-based funding or HBF. It it was very important and life-changing for her to receive this special waiver. It not only gave her funding to attend a day school where she was able to socialize with others, do gardening and cooking and basically have a joyful existence! She loved going to her Day program. In addition the waiver also provided her a personal care worker who spent about 15 hours with her a week. This person felt like a sister to her and this person always lifted her up and made her extremely happy! Medicaid for people with special needs is absolutely necessary! It’s beyond even something that helps in medical bills. We can also talk about medical bills. There is no way she could have ever afforded the care that she needed without Medicaid. To remove this program would be absolutely devastating for many in this country. It is unimaginable and cruel.”
– Michelle
“I never imagined that I would become disabled, especially at a young age. I had been working since my early teens, believing that if I worked hard, I would always be able to provide for myself and my family. But by 25, my body was in complete flare-up, and I found myself unable to work while raising two small children as a single parent. Then came the life-changing diagnosis—a brain tumor. Without Medicaid, I would not be here today. Medicaid has provided me with the lifesaving medical care I need to survive and be there for my children. It has allowed me to continue my advocacy work, where I fight for disability rights and support the most vulnerable in our communities. My life has meaning, just like the lives of millions who rely on Medicaid. Cutting Medicaid would be devastating—not just for me, but for countless others whose survival depends on it. Please, don’t take away our lifeline. Our lives depend on it.”
– Maria
“Pay for my profoundly autistic son’s meds and frequent hospitalizations.”
– Sharon
“Keep my daughter alive. She is very medically fragile.
– Greg
“I am a Medically Fragile Technology Dependent person. Medicaid is the only reason I can live with my parents and not have to live in a hospital or institution. Medicaid pays for me to have my ventilator, oxygen, suction machine and all the supplies necessary for me to be able to live in my home with my family. I have ROHHAD Syndrome. And extremely rare medical condition that only about 100 or so children have ever been diagnosed with. Medicaid also pays for my private duty nursing so that I can go to school and work in the community. Without Medicaid’s support I would have a tragically horrible life in a cold and uncaring institution somewhere, away from my family. I NEED medicaid so that I can live a life that I love, WITH the people I love.”
– Todd