With FMS, Colette’s World Knows No Bounds
Through the Accra Way Fund, Colette and her family received a wagon to enjoy outdoor adventures.
When Colette was 15 months old, her mother Erica knew something was not right. Colette had not hit typical milestones such as learning how to sit up, stand unassisted or walk.
“My daughter was born on time. But when she was born, she was very small, and she had a lot of health issues. She wasn't walking,” Erica said.
After seeing her lack of motor functions, Colette’s doctor recommended her to several other medical professionals, and she was diagnosed with hypotonia, or reduced muscle tone. She was also diagnosed with a tethered spinal cord, which occurs when the spinal cord is attached to tissue around the spine and prevents it from moving freely. This can cause foot and spinal deformities, weakness in the legs, pain in the lower back and loss of bladder and bowel control.
Now 10 years old, Colette also has a weakened immune system, which causes her to get sick frequently, and she is diagnosed with ADHD. On a daily basis, Erica cares for Colette and her 18-year-old brother Conner, who is diagnosed on the autism spectrum, and has been managing some recent health issues of his own. For a mother of two, it’s more than a handful.
“I needed different financial supports, as well as the ability to only work part time because my daughter has so many appointments and goes to the hospital sometimes,” Erica said. “It's hard to work a full-time job when you have a medically challenged child.”
Conner and Colette
Making the Call
About five years ago, Erica learned about Accra through a friend who was receiving Financial Management Services (FMS) for her own child. Her friend, a qualified intellectual disability professional, recommended that Erica call Accra, knowing she was overwhelmed.
“We just needed some extra support,” Erica explained. “She told me about Accra and the different services that they provide, getting on a waiver and getting a services assessment. She said, ‘Why don’t you give them a call?’ So, I did, and that’s how we ended up with Accra.”
FMS enables people with long-term care needs or disabilities to easily hire and employ caregivers and purchase other supports needed to continue living in the community. Accra processes employee timesheets, vendor payments, expense reimbursements, workers’ compensation enrollment, and federal and state tax filings, allowing clients to focus on living their life.
Clients who are on the Consumer Support Grant or the Consumer Directed Community Services (CDCS) program utilize FMS to manage their budget. With CDCS, parents like Erica and her husband, as well as their trusted neighbors and friends, can be paid for providing caregiving services and reimbursed for the support purchases they need to make.
“The equipment is very expensive. So whatever insurance doesn't cover, I can cover with my waiver. There are also different classes that she can do that we pay for with the waiver, which is amazing,” Erica said. “Otherwise, we wouldn't be able to afford that stuff.”
A Day in the Life
Each day Erica helps Colette get dressed, brush her hair and get ready for school. Then she makes the kids breakfast and helps Colette eat and take medication via a feeding tube, which must be flushed with warm water after each use.
Colette’s dad takes her to school while Erica cares for Conner at home. Conner is enrolled in a Community Access for Disability Inclusion (CADI) waiver, which provides funding for Erica to support his independent living needs.
“He's more independent, but I still help him. We still administer meds and stuff for him,” Erica said. “So just helping with that throughout the day, bringing him to any appointments that he has, and just spending time with him.”
In the afternoon, Erica and Conner pick up Colette from school and bring her to occupational therapy appointments. Colette can be exhausted after a full day, but if she has a bit more energy, the family will do fun activities together before eating dinner and getting ready for bed.
Sometimes they will play board games in the evenings or watch a movie. Other nights, Conner plays video games or works on his art. He loves to express himself through coloring and cross stitching. Colette on the other hand is more active.
“She’s a singer. Singing and dancing are pretty much Colette’s favorite things. She also loves being with her friends,” Erica said. “She is getting a little bit into sports, so we're looking for some adaptive leagues that she can do.”
Gaining More Freedom
Getting around outside isn’t always easy though. Colette’s wheelchair is difficult to maneuver in nature and on unpaved surfaces. Last year, the family visited Yellowstone National Park, and traversing the trails was quite a challenge.
“It was really hard to go through Yellowstone with a wheelchair because the paths aren't very nice,” Erica said.
Colette must also avoid getting bug bites since she is very allergic and prone to cellulitis. Thankfully, they now have a solution to both of those problems.
“I was able to get a wonderful wagon covered by Accra. We needed one that will last many years, and it has a 300-pound weight limit. It’s very nice, and it can carry all her stuff,” Erica said. “If we're out during the summer, we can get a bug shield on the canopy so that she doesn't get bit.”
The wagon was paid for through the Accra Way Fund, a program that offers funding support for Accra clients, their families and caregivers. The fund is used to purchase an item or service that supports a therapeutic goal or enables a more self-directed life. The funds are available for items or services that cannot be paid for through Medical Assistance or other funding sources.
This new set of wheels makes it possible for the family to attend events like the Renaissance Festival and the State Fair, and they can travel to more parks and trails. Most importantly, they can do so with the peace of mind that Colette is safe, comfortable and happy.
“We've had nothing but positives with Accra. Everybody is so easy to get ahold of, so easy to talk to. They are on top of things,” Erica said. “It feels good that I'm able to send people to [Accra] and I feel very confident and comfortable with my recommendation.”