“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...
Gina cares for four people in total: two of her five children and both of her parents. Gina has a 14-year-old son with undiagnosed schizophrenia and diabetes, an 11-year-old son with autism, a father with heart disease, and a mother recovering from a brain tumor....
Sheryl’s husband has dementia and Parkinsonian symptoms. Sheryl does everything in the household from finances to house repairs and cooking, cleaning, and maintaining their way of life. Sheryl has found it hard to take over her husband’s duties as well as her own. Two...
Letty’s mother, who had dementia, has since passed on, but Letty still cares for her father. Letty herself is suffering from health issues on top of the support she provides to her parents, and finds it difficult to find the time and the ability to travel to and from...
National Alliance for Caregiving
1730 Rhode Island Ave. NW
Suite #812
Washington, D.C. 20036
