By Vivian Sade
CHURUBUSCO — Jodi Gump Shepler wants to “get out and work.”
She’d held down a number of jobs in the past, and she thinks about going back to college and earning a degree in the medical field.
But for now, that is a pipe dream.
She’s working — perhaps more than ever — but not in the traditional sense of the word.
The divorced mom of two must be available at all times to help care for her son, Jonathan, 15, who has Duchenne muscular dystrophy.
DMD, the most common and severe form of muscular dystrophy among children, is a genetic disorder characterized by progressive muscle degeneration and weakness. The disease primarily affects boys, but in rare cases it can affect girls. Shepler’s younger son, Blake, 13, does not have DMD.
Shepler, 36, rents a house in Churubusco from a relative. She has not worked since last year. The family’s income consists of Social Security disability (for Jonathan), sporadic child support and food stamps. Shepler gets a small amount of money from babysitting her cousin’s children four days a week, before and after school.
Currently, she receives child support, so the family’s total monthly income is about $1,200, plus just over $300 in food stamps. If the child support stops, which happens frequently, she said, that amount quickly drops to $800 a month.
The family struggles to meet the most basic needs, let alone the never-ending and expensive needs of a disabled child.
The boys have health coverage through Medicaid, and Shepler recently received approval for health insurance through the Healthy Indiana Plan, known as HIP 2.0. The state plan is funded through the national Affordable Care Act and serves more than 370,000 low-income Hoosiers.
On call 24/7
In the past, Shepler took time off from work multiple times due to her son’s health needs. In 2014-15, Shepler worked at Walmart. In October, Jonathan was hospitalized for four days, put on a feeding tube and missed about six weeks of school.
“(The illness) really set him back, and I realized I could not take off for weeks at a time. And this was not going to be a one-time thing,“ Shepler said.
Even though she would like to “get out of the house and work,” Shepler did not agonize over quitting her job — there was no other option.
Jonathan, who has been in a wheelchair since second grade, is now a freshman at Churubusco High School. Even when he is away at school, his mother is “on call” and must stick close to a phone.
The school often calls and asks Shepler to come and assist with Jonathan’s hygiene and physical needs because it has a “no-lift” policy.
When Jonathan was in kindergarten, his teachers alerted Shepler to some of their concerns and observations — Jonathan fell often and his large calves seemed out of proportion to his tiny body — both symptoms of DMD.
After the devastating diagnosis, Shepler — who was adopted — found out that her birth mother’s family was a carrier of DMD. Typically, females are carriers of the gene and males develop the disease.
Weighing the needs
The maternal love and concern is immediately evident to outsiders in the way Shepler speaks with her sons, the way she smooths back Jonathan’s hair, the way she laughs at Blake’s jokes.
All too often, Shepler must decide between two immediate needs. Her boys’ needs come first.
“If they need clothing and I need clothing, well, I can’t afford both, so I will get theirs,” she said.
In December Jonathan was fitted for a new, larger wheelchair, which is covered by Medicaid and should be delivered this summer. Shepler’s 2000 Dodge Caravan has a wheelchair lift in the back of the vehicle. The van has 167,000 miles on the odometer, but that’s not the problem. Jonathan is able to drive his current chair into the back of the van, but it’s almost too large for the van, so his mother first must remove the flip-up foot rests so the chair will fit and, then, once inside the van, lift Jonathan into the van seat and strap him in. Shepler’s wheelchair has shoulder harnesses to station his upper body, but the van does not.
“He is not comfortable in the van seat, and sometimes Blake must help reposition his neck and head,” Shepler said.
A handicap-accessible van with a side lift so that Jonathan could simply roll into the van and remain in his chair would be ideal. Used wheelchair vans are advertised at between $20,000 and $50,000, which, Shepler said, shaking her head, is out of the question.
The small, ranch-style house she lives in does have an outside wheelchair ramp, but little else.
A room with a large entryway in back of the kitchen has been dubbed the “boys’ room.” Jonathan loves sports and wants to be a sports commentator someday. He enjoys surfing the Internet, watching YouTube videos and playing games with Blake.
Most of the other doorways in the house are not large enough for Jonathan’s wheelchair, and his mother must lift and carry him to the bathroom and bedroom.
A carpenter probably could fix the situation, but Shepler does not know any and can’t afford to hire one.
Shepler finds herself in a quandary. She wants to work, but faces too many obstacles, she said. Jonathan’s one and only caretaker is his mother. Employment, even at a minimum-wage job, could cause the family’s benefits to be reduced or even eliminated.
Shepler ticks off her wish list: Affordable, handicap-accessible housing, a day care program or assistance for children with disabilities, schools that are more equipped to handle the needs of special needs children.
“Maybe what is needed is just more community awareness in general, a way for families to reach out to each other for support and to share information,” she said.
Shepler tries not to get too overwhelmed with her situation.
Every night, after saying good night to Blake, Shepler carries Jonathan into his bedroom, puts him to bed and hooks his feeding tube up to a pump that “feeds” the frail boy a nutritional supplement throughout the night.
“I don’t go to bed until I know Jonathan is asleep, which is usually around midnight,” she said.
Shepler sometimes relaxes by herself in the living room for an hour or so before going to bed.
“That’s my time,” she said.