“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’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...
Sarah spent several years caring for her brother who suffered from cognitive decline, endured physical challenges, and was diagnosed with COPD. He used alcohol to cope with his conditions, which complicated the care Sarah provided. After her brother passed, Sarah...
When Debbi’s son was born premature and bleeding in his brain, the doctors gave him two weeks to live. Debbi has now been caring for him, along with the rest of her family, for 27 years. Debbi is not a stranger to hardship. Her husband was a career Marine and was...
National Alliance for Caregiving
1730 Rhode Island Ave. NW
Suite #812
Washington, D.C. 20036
