“I’ve always sought out my own caretaking staff because I prefer to pick people that we know, due to Alaina’s level of vulnerability… The FMS services through the CDCS program has helped ease some of the hiring process, like applications and background checks for potential caregivers. It frees me up as a mother and caregiver to be there for my child and meet her daily basic needs.”
Jenny Butcher
As a mother of four and grandmother of two, Jennifer “Jenny” Butcher enjoys spending time with her busy family and her husband of 25 years. Alongside being an amazing wife, parent and friend, Jenny holds another important title: she is caretaker and Responsible Party to her daughter Alaina.
Throughout her pregnancy with Alaina, Jenny felt very sick and needed to spend time on bed rest. About 34 weeks into her pregnancy, Jenny discovered that Alaina was not moving in utero and had an irregular heartbeat. The doctors recommended an emergency C-section, and Alaina was born six weeks prematurely. As Alaina grew, she experienced some developmental delays.
“At first we didn’t know what was going on,” Jenny said. “We thought the delays were occurring because she was born prematurely… she wasn’t hitting certain milestones or catching up like she was supposed to.”
At age five, Alaina was diagnosed with a rare genetic disorder that impacts only about 500 people worldwide: Cardiofaciocutaneous syndrome (CFC). CFC is a disorder that impacts the heart (cardio-), facial features (facio-) and the skin and hair (cutaneous). Those who are diagnosed with CFC often experience heart issues, and they have very distinctive facial features, brittle hair, delayed development and mild to severe intellectual disabilities. Though many of these disabilities and abnormalities are present at birth, some can develop over time.
For Alaina, her heart has not been impacted as a result of CFC, but she does have brittle, curly hair, a short stature and distinctive facial features. She has also struggled with eating orally and at times used a feeding tube. However, through occupational and speech therapy, she has learned to eat orally, and at five years old, she learned how to walk.
Since Alaina was young, Jenny has served as her primary caretaker, overseeing her daily care and hiring staff to support her needs. Initially, a family friend worked as a Personal Care Assistant (PCA) alongside Jenny and her husband. After Alaina grew older and her care needs changed, Jenny found Accra and the Consumer Directed Community Supports (CDCS) program.
“I’ve always sought out my own caretaking staff because I prefer to pick people that we know, due to Alaina’s level of vulnerability,” Jenny said. “The FMS services through the CDCS program has helped ease some of the hiring process, like applications and background checks for potential caregivers. It frees me up as a mother and caregiver to be there for my child and meet her daily basic needs.”
Jenny and Alaina’s caretakers assist her with dressing, grooming, bathing, preparing meals and feeding. In the fall, Alaina typically heads to her transitional day program that mimics a typical school day, easing the need for full-time care assistance. During the summer, Jenny seeks caregivers who can work more hours to handle Alaina’s elevated need for daily care.
“There are so many things that I’m dealing with each day in regard to Alaina’s disability and over time, we’ve seen staff come in and out of our lives,” Jenny said. “Each year, right before the summer, I find that I’m looking for a more full-time caregiver which leads to more applications, paperwork, background checks, etc. Accra has made it easy to submit documents and get through the process quickly, which makes my job easier.”
One of the most important pieces of Alaina’s care is bringing purpose to her life, including ensuring that she has a social life and helping her engage in activities that fulfill her aspirations. Alaina is part of a local adaptive dance program that hosts performances, and she enjoys riding horses once a week.
“COVID-19 has had an impact on our caretaking situation, and it has shut down not only Alaina’s activities, but the lives of all people with disabilities,” Jenny said. “Throughout the change, Accra has made it easy to shift Alaina’s care to adjust to our needs during this time and make things easier for our family.”