BRAZIL, Ind. (WTWO/WAWV) — Jaime O’Neal says her son, Colson, was less than six months old when a babysitter made a decision that forever altered their family’s life.
“She put him in a crib with some other things in it and he suffocated,” Jaime said. “Which resulted in a traumatic brain injury.”
Colson spent a month recovering from that injury at Riley Hospital for Children in Indianapolis. When he came home, his parents tried to care for him while both still working.
Then, Jaime found out about becoming an attendant caregiver, an option available through Indiana Medicaid’s Aged and Disabled Waiver program.
“I was reluctant to quit my job to do it,” Jaime said. “But I was assured by the case managers and everybody involved that this was a permanent thing and this would be really beneficial to our family.”
The O’Neals had learned how to care for Colson within their family unit, but were very wary of letting him be left under the care of others after the incident that led to his brain injury. Additionally, there were several needs that Colson had that were not going to be able to be provided by just any caretaker.
Colson stopped taking a bottle around six months after he came home from Indianapolis, which led to a gastrostomy tube, or G-tube, being inserted in Colson’s belly to ensure he was able to continue his growth.
Jaime still feeds Colson through the G-tube as part of her daily mom/caregiver duties. He also lives with cerebral palsy, epilepsy and cortical visual impairment, so there are nearly nonstop duties associated with getting him through the day, as well as to and from his continuous appointments.
“He can’t feed himself, he can’t change himself, he can’t move himself from place to place,” Jaime said. “He doesn’t walk, he doesn’t talk, you know, he relies on us for all his care.”
Jaime has been getting paid to care for her son, but that option is now becoming complicated due to a recent announcement from the Indiana Family and Social Services Administration.
The announcement is regarding changes to the A&D waiver program, set to take effect July 1, which will no longer allow parents or legal guardians of a minor (Legally Responsible Individuals or “LRI”s by formal definition) to provide attendant care and receive payments.
The news shocked Jaime, and spurred her to action.
“I immediately that day, within an hour or so, started a petition,” Jaime said, referencing a Change.org petition that now has nearly 20,000 signatures. “I’m like ‘this cannot happen’, (there’s) not just my family but thousands of Hoosiers that this is gonna affect and have a negative impact on their life.”
Jaime, and many other families fighting these changes, have found a spokesperson in Tendra Duff, a community liaison with Guardian Care, a provider of attendant care services in Indiana.
Tendra has seven-year-old identical twins with Down Syndrome, and had to quit her job when they were babies due to the strain of their appointments and other needs. Before getting connected with Guardian Care, Tendra’s family had been living under the conditions of a single income, and she said the ability to be a paid caregiver for her sons greatly improved the family’s quality of life overall.
“You don’t really understand how much strain you’re under when you go to that single income until you put that second income back into play,” Tendra said. “Just to answer the question ‘yes, we can do that’, and it put so much pressure off of my husband to feel like ‘hey, I need to make sure there’s no way that I get fired ‘cuz if something happens to me, how do I support my family?”
Tendra started sharing the information about the program with other families who she knew would greatly benefit from it, and now many of those families are reaching back out to her in a panic due to the waiver changes.
The questions Tendra said she is receiving allude to fear of financial crisis.
“‘Are we going to be able to afford to put food on the table? Is this gonna send us into Section 8 housing? How do we apply for food stamps?'”
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.
The website goes on to reference a “structured family caregiving” service for families to utilize, but there are several references to “intermediary agencies” involved in that process that are said to receive a portion of the caregiver’s compensation.
Tendra said the situation, as it stands right now, leaves parents with more questions than answers.
“We truly want a comprehensive evaluation of the whole Medicaid program,” Tendra said. “And in the end, what does that look like? We want clarity on their tailored solutions that they’re offering, because right now what they’re offering is not appropriate for many of our families.”
For Jaime, the idea of going back to the way her family operated before she was paid to be Colson’s caregiver is frustrating and nerve-wracking.
“Without this program, I don’t know how I would keep up,” Jaime said. “Between working and doing all that; therapies, appointments, medications, G-tube feedings, all of that. It would just be very, very difficult.”
Representative Alan Morrison (R), who represents Indiana House District 42 where the O’Neals live, responded to a request for comment for this story with the following statement:
“I share the concerns this family and many others have expressed over Indiana Family and Social Services Administration’s proposal to end payments to parents, guardians and spouses who care for their aging and disable loved ones. While costs to this program are rising to unanticipated and significant levels, the state needs to find a balance between supporting families and our most vulnerable while responsibly controlling costs. I expect these discussions to be ongoing and I will continue to monitor the situation. I encourage those who will be affected by this change to share their concerns during FSSA’s public comment period, which ends Feb. 17.”
Representative Alan Morrison (R) – Indiana House District 42
The public can access more information on the FSSA waiver changes and options for public comment by clicking this link.
As mentioned by Rep. Morrison, the public comment period ends on Feb. 17. There have been multiple rallies held at the Indiana Statehouse by concerned parents and other supporters, and Tendra said more are planned before that comment period is up.
A request for comment and more information from the FSSA by mywabashvalley.com has not been responded to as of the publication of this article.
