Basiliso has been a caregiver since his parents began to age. In 2019, his mother broke her ankle and was placed in a care home, where her health continued to decline. Basiliso brought her into his home so he could provide the care she needed until she passed away in...
“If [Medicaid] cuts happen, that means, honestly, we would be homeless, and we wouldn’t have the resources we need, and my mom wouldn’t have care. It starts a cycle where I wouldn’t be able to work, and I wouldn’t have what I needed to be able to survive in this...
Trixy and her husband are devoted caregivers to their daughter, Harper, who lives with profound medical challenges. Diagnosed with periventricular leukomalacia (PVL), Harper developed cerebral palsy, spastic quadriplegia with dystonia, and severe vision impairment. As...
Terry has always cared for her daughter, who has severe intellectual disabilities. When her daughter was 19, she developed schizophrenia, which affected her disabilities and caused her to decline cognitively. Terry needs to help her do everyday activities like...
Teresa is the mother of two sons, one of whom is a 26-year-old with profound autism. Teresa acts as his guardian and his representative for self-directed services. She is also his caregiver. Teresa’s son qualifies for personal assistance (PA) services under a Medicaid...
Susan and her sisters are devoted to their aging mother, whose health has been steadily declining. Diagnosed with both Chronic Obstructive Pulmonary Disease (COPD) and macular degeneration, their mom now requires daily support just to manage basic tasks and maintain...
Starr knows that caring for someone is a full-time job. She cares for her son, who has severe autism, developmental delays, and a rare genetic disorder that affects his behavior and cognitive functioning. Starr is a single parent and is the only one available to care...
Shannon has two children with complex medical needs – a son and a daughter. Her daughter has Down Syndrome, a sensory processing disorder, hyperthyroidism, obstructive sleep apnea and a heart condition, while her son has been diagnosed with autism, anxiety, and ADHD....
Sarah’s daughter, Jessi, was diagnosed with tuberous sclerosis complex disorder at five months old. Her condition causes epilepsy, autism, kidney disease, developmental disabilities, development of tumors and cysts on all of Jessi’s organs, and a lung condition. Sarah...
Mary met Rachel through her local advocacy and community work. Rachel, who has dual mental schizoaffective disorder and developmental disabilities, can be prone to violent outbursts. Mary is known for her expertise in mental health and de-escalation. She began working...
Kory cares for his 6-year-old son, Asher, who lives with spinal muscular atrophy type 1. He has a trach, a G-tube, and sleeps with a ventilator at night. He is able to move around on his own with mobility devices but needs help to and from those devices. When Kory and...
Julie is the mother of twin boys with Down syndrome. Medicaid home and community-based services have been a lifeline for her family, covering essential medical costs through the Katie Beckett waiver and offering critical supports like respite care and Community...
Nash is a four-year-old diagnosed with acute flaccid myelitis, a rare spinal cord condition that leaves him paralyzed from the neck down. He is dependent on a trach tube to breathe and a G-button to feed. Jordan is not only his mother but his full-time caregiver. All...
Jennifer is a caregiver for her daughter, who has two rare chromosomal deletions, causing her to be medically complex. Among her diagnoses are intellectual disabilities, seizures, IBD and ARFID. For the past three years, Jennifer has been provided with a stipend...
Jennifer’s caregiving journey began in 2011 with the birth of her second child. Her son, who had complications in utero, needed surgery in order to live, and now has a condition known as short bowel syndrome. Jennifer also has two daughters, both born after her son....
Heather’s son Matthew is 13 years old and living with severe autism and epilepsy, which is currently in remission. Heather has been providing care for Matthew since he was a baby. In addition to the routine care a mother provides, making sure Matthew is fed and...
Carolina’s care journey began in 2016 when both her parents were hospitalized – her father with rhabdomyolysis and her mother with pneumonia. Now, both her parents are 90 years old and live with kidney disease. Her mom is legally blind and has Alzheimer’s, and her dad...
Brittany’s son, Camden, has cerebral palsy. He is trach dependent, G-tube dependent, non-ambulatory, and communicates with an assisted communication device. Brittany is his caregiver. Every day, she provides typical nursing activities like moving him from place to...
Alicia is the legal guardian for her two granddaughters, both of whom are diagnosed with depression, anxiety and PTSD. Medicaid provides stability and coverage for vital healthcare services and medications that allow Alicia to focus on caregiving to her...
When Anita’s mother’s health started to decline, Anita retired early to provide her with personalized care. Anita’s mom is blind, has dementia, and is battling three types of cancer in different stages. Melanoma on the bottom of her foot has caused mobility issues and...
Being Christina’s care partner has been one of the most rewarding, challenging, and life-changing experiences of my life. It has tested me emotionally, stretched me intellectually, and reshaped who I am. Christina has C3G, a rare kidney disease. Before caregiving, I...
Yang has been caring for her son who was diagnosed with chronic heart failure at a young age. After several surgeries as a child, her son received a heart transplant in 2018 at the age of 15. Yang believes that caring for his chronic heart condition prepared her...
Omar has been through a rough experience caring for his wife, who received a heart and kidney transplant. He has supported her through everything and helps her with whatever she needs. This has been especially challenging because Omar worked in Georgia during the...
Nancy began caring for her husband about eight years ago when a routine blood test diagnosed him with early-stage blood cancer. The doctor informed Nancy’s husband that his best hope for longevity was a stem cell transplant, so he went on the waitlist. There was a lot...
Lorraine became the caregiver for her adult niece when she was diagnosed with liver cancer and then hepatic encephalopathy. Her niece’s daughter and ex-husband lived in different states, but Lorraine was only a few hundred miles away, so she traveled to be with her...
Jesus is a care partner for his younger sister, who, after visits to several doctors was diagnosed with kidney disease. She was told that she would need a kidney transplant. Jesus’ mom is older and was already dealing with some health complications of her own. That...
Jeanne has been caring for her daughter since she was very young. As a child, a viral infection attacked her daughter’s heart, causing her to need a heart transplant; in 2020 as a young adult, Jeanne’s daughter needed a kidney transplant as well. Jeanne has been her...
When Ira met his wife, Glenda, she had manageable Type 1 diabetes. Their relationship began as a care partnership, where Ira would attend his wife’s doctor’s appointments and would help her manage her chronic disease. Increasing complications with her diabetes...
When Hailey’s daughter was born, Hailey instantly became a caregiver. Upon her daughter’s birth, doctors had to remove about 98 percent of her intestines, and only gave her a few weeks to live. They did not explore any options on how to help her. Hailey and her...
A few years ago, Georgette’s sister started experiencing medical complications. While Georgette lived in New York City, her sister and her family lived in Atlanta, where her husband worked. It was decided that the medical complications were serious enough that...
