Sarah Allen: Independence Made Possible by Medicaid

Sarah Allen is 29 years old and has lived in Princeton, West Virginia all her life. Being blind shapes every part of her daily reality. “Being blind means that I just I can’t see, so sight is not my world. I hear things better than anything, and hearing is more my world. So, for example, I don’t want someone asking me what color something is. That happens all the time, because I can’t see the color,” she explained.

Medicaid makes it possible for Sarah to have a caregiver five days a week, seven hours a day. The support allows her to manage her life in a way that would otherwise be out of reach. “They get my shower set up for me, and if I’m struggling with arthritis, they wash any part that I can’t get. If I need help putting something on because I can’t find the tag or something, she helps me,” she said.

Having a caregiver who is not family gives Sarah a measure of independence. “Independence is important for me because it just gives me the freedom to be able to make my own decisions. Now, there are some decisions I need help with, but it gives me the freedom to be allowed to choose what I can do and what I cannot do,” she said.

Sarah’s caregiver, Sandy, has become much more than someone who helps with daily tasks. “She is a wonderful lady. I can’t stop bragging on her,” Sarah shared, “She is someone who goes above and beyond to make sure that I have what I need and even what I want … If something’s out of place, if I’m upset or anxious, it seems like she always asks me what’s wrong and tries to help. She’s always there for a listening ear to talk to. She’ll go to the end of the earth to make sure I have care,” Sarah said.

However, Sarah worries about how caregivers are valued within our health care system. “Someone who’s good like Sandy gets dismissed easily, but she works so hard, and she deserves to be paid well. The state of West Virginia who provides our caregivers, to me, it’s obvious that even though they provide the caregivers, they don’t understand how much a client needs a caregiver. My company now pays my caregivers $11.50 an hour. It doesn’t seem like $11.50 an hour is always a good rate to attract good quality people,” she explained.

When caregivers cannot make it to work, Sarah is often considered less of a priority. “I’m not elderly. I’m out of bed, so if my worker calls in, they consider me someone who doesn’t always need coverage,” she said.

For Sarah, the issue comes down to fairness. “All West Virginians, regardless of whether they have a disability or not, deserve good quality health care,” she said.