By Jenny Gold: For More Info, Go Here…
Sylvia Colt-Lacayo is 18, fresh-faced and hopeful, as she beams confidence from her power wheelchair. Her long dark hair is soft and carefully tended, and her wide brown eyes are bright. A degenerative neuromuscular disease, similar to muscular dystrophy, has left her with weak, underdeveloped muscles throughout her body, and her legs are unable to support any weight. Each time she needs to get in or out of her wheelchair — to leave bed in the morning, use the bathroom, take a shower, change clothes — she needs assistance.
Throughout her young life, Sylvia has been told her disability didn’t need to hold her back. And she took those words to heart. She graduated near the top of her high school class in Oakland with a 4.25 GPA. She was co-captain of the mock trial team at school, served on the youth advisory board of the local children’s hospital, interned in the Alameda County District Attorney’s Office and is a budding filmmaker. In April, Sylvia learned she had been admitted to Stanford University with a full scholarship for tuition, room and board.
To move out of her family home and into a dorm, her doctor determined she would need at least 18 hours of personal assistance each day to help with the daily tasks typically done by her mother. As she began to research options, Sylvia came to a startling conclusion: Despite the scholarship, her family wouldn’t be able to afford the caregiver hours she would need to live on campus. And she would learn in coming months that she was largely on her own to figure it out.
People with serious disabilities face a frustrating conundrum: Federal and state insurance will pay for them to live in a nursing home, but if they want to live in the community, home-based care is often underfunded.