SWITZ CITY, Ind. (WTWO/WAWV) — Renee Donald was 20 weeks pregnant with her fourth child, James, when she received devastating news from her doctors.
“They did a fetal ultrasound and told me he was incompatible with life,” Donald said. “But this little man had other plans.”
James is now seven, and while he does struggle on a daily basis with multiple brain malformations, hydrocephalus, and cerebral palsy, he continues to amaze doctors and his adoring family, even now using a communication device that he has taught to make jokes.
James is a big fan of the ABC’s, which his family members sing to him in moments of discomfort, and he is also excited for the chance to watch videos on his eldest sister’s phone, but, he is incapable of doing things like walking, speaking, or eating orally.
Due to the extent of James’ medical needs, Donald has been his primary caretaker, receiving payments through Indiana Medicaid’s Aged and Disabled Attendant Care Waiver program.
Now, the Family and Social Services Administration in Indiana plans to change the Attendant Care Waiver program this summer in favor of a “structured family caregiving” service that utilizes “intermediary agencies.”
Donald said the level of care she gives to James, including G-tube feedings and trips to various weekly appointments and therapies, would not be easy to find in another caregiver, especially in the rural Greene County community the family lives in.
“You have to know him to know what is going on with him,” Renee said. “You have to ‘speak James;’ that’s what his brother calls it, (and) he says ‘it’s not hard to speak James,’ (and) I say ‘it’s not hard for us to speak James, because he’s ours.'”
Donald is a single mother raising three older children as well, and said her oldest daughter, who is 18, would likely have to become James’ caregiver in order for them to even attempt to stay financially stable if the FSSA program changes move forward.
Since the program changes were announced in January, many Hoosier families who are part of the attendant care program have taken part in protests at the Indiana Statehouse in Indianapolis and have signed a petition to bring attention to their cause; the Change.org petition now has over 35,000 signatures.
According to the FSSA website, the change in programming stems from a “variance of more than $900 million in state funding compared to previously anticipated expenses,” in relation to the Medicaid program.
Several legislators have tried to work language and amendments into bills at the statehouse this session to help address the changes coming to the FSSA waiver program and the Medicaid program overall.
Some of those amendments can be found in the text of Senate Bill 256, which deals with fiscal matters.
With the session close to its end, current attendant caregivers say there is still so much unknown, and little time for them to prepare for the shift in their lives, which some families say could be monumental.
“I know we have a lot of families in panic right now,” Tendra Duff, a mother of two medically complex children and a community liasion for Guardian Care, said. “They say we’re transitioning to this structured family care, but what does that look like? Are we adding tiers? Are we gonna have that skilled respite that our families need and now utilize? We haven’t even been able to have a provider tell us what that’s gonna look like from the provider side.”
With James’ short life expectancy, Donald said the added stress of this expected change is terrifying.
“Our life is full of unknowns already,” Donald said. “We don’t even know how long we’ll have him, let alone anything else.”
Donald said she has even considered taking courses to become a Certified Nursing Assistant for James, but worries about the ability of her family to financially adjust in the meantime; she said no matter what, James is worth it, but she’d rather have the changes halted altogether.
“Please don’t do this,” Donald said, tearing up. “Don’t take away these parents’ ability to survive financially and care for our very fragile children.”
Mywabashvalley.com has reached out to the FSSA for comment on the waiver program changes and the concerns of families and is awaiting a response.
