Stacy Drake: A Mother's Search for Help That Doesn't Exist

Stacy Drake is a mother of three from Shelburne, Indiana. Her oldest son, Bentley, was diagnosed with autism and ADHD at age three. He was nonverbal until he was five, and he still struggles with speech that few people besides his mother can understand. He is set to turn 14 this month.

Bentley’s care had been stable for years under a primary care doctor who also served as his neurologist. Around age 11 or 12, he began seeing a psychologist to manage his medications. When that psychologist left the practice, Bentley was transferred to a new one who worked by telehealth. Bentley began having nightmares, and to treat them, the doctor, with Stacy’s approval, changed the medication he had been on since he was a toddler.

About two weeks later, Bentley began telling his mother that his “bones feel funny” and that his head and heart hurt. She assumed it was his body adjusting to the new medication. Then, after being hospitalized for what turned out to be a false alarm about a UTI, he began hallucinating in the emergency room, insisting there was a needle, and later a camera, in his body. No procedures involving either had been performed. The hospital attributed it to anxiety and sent him home.

The hallucinations continued the next day, and on the advice of his behavioralist, doctor, and home nurse, Stacy brought him to a local mental hospital, where he stayed four days with no change. He came home a different child. “He went from high functioning to low, like hallucinating, stunting, grunting, doing the stimming, like all those things that Bentley’s never done, he started doing,” Stacy said.

His primary doctor referred the family to Riley Children’s Hospital, where Bentley spent a week undergoing an MRI, CT scans, a lumbar puncture, and EEGs. He was diagnosed with excited catatonia. Stacy was told the cause was possibly a minor cold, but she does not accept that explanation. “I truly believe it was the med change because they didn’t wean him off the medication,” she said. “And he had been on this medication since he was three and they did not take him down a dose. They just stopped and started.”

For months afterward, Bentley cycled through hospital after hospital, and each one told Stacy the same thing: he could be stabilized, but not kept. All the while, Bently’s violent tendencies grew. He kicked Stacy’s now-husband in the face and gave him a bloody nose and attacked Stacy while she was driving. One hospital said it couldn’t help because he wasn’t yet an established outpatient. Another discharged him after three days with no changes to his care. A third refused to admit him at all because of his aggression. “He’s not safe, but you’re not keeping him because you can’t,” Stacy said. “It just doesn’t make sense. None of it makes sense.” During this period, Stacy even called Indiana’s Department of Child Services (DCS), hoping for help. A caseworker visited but said there was little the agency could do because Bentley wasn’t being endangered. “But he needs help and I don’t know how to help him,” Stacy said. “He’s not safe.” Around the same time, his ABA therapy program said it could no longer keep him or the other children safe. With nowhere left to turn for day-to-day support, Stacy could no longer maintain a job.

With every institution telling her there was nothing more they could do, Stacy was ultimately advised by people experienced in the system that the only way to get Bentley into residential treatment was to refuse to pick him up from the hospital. “The hardest thing I ever had to do in my life,” she said. “I would never dream of giving up rights to my child, but he needed help, he really needed help.” DCS called her after midnight to ask if she understood what she was doing. “I don’t know what else to do,” she told them. “I’ve gone down every avenue that I possibly can to help my child. He’s a risk to himself, risk to everyone around him. And no one’s helping us.”

Bentley was placed in a residential facility in their town from May 2025 to January 2026. From the first tour, Stacy worried it wasn’t the right fit; the program was built entirely around rewards, which she believes worsened Bentley’s behavior given his fixation on toys. “Everything he does, he expects a reward,” she said. “And when he doesn’t get that reward, it goes bad.” She raised concerns from day one about the medication plan, but the facility’s doctor, who also treated Bentley during his earlier hospital stays, refused to meet with her or change his medications despite her objections. Meanwhile, staff pushed her to take Bentley off campus, something she refused out of fear that an incident in public could result in his arrest. “I didn’t want to do that to him,” she said. “I don’t want to terrify him even more than what is already going on.”

The turning point came when Stacy’s DCS worker told her she could simply revoke permission for the facility to administer antipsychotic medication to Bentley, an option Stacy hadn’t known she had. “Why didn’t you tell me that months ago?” she said. She revoked the permission, and although the facility began weaning Bentley off the medication, she felt the process wasn’t being handled properly and pushed for his release. Stacy secured a court date backed by a review from Riley Children’s Hospital comparing its assessment to the facility’s, known as a PNAC review. Riley agreed the medications were wrong for Bentley. With that in hand, Stacy got him released months before his scheduled discharge date.

With his aggressive tendencies, the family has installed an alarm on Bently’s bedroom door and a camera, and keeps knives locked in their bedroom. “We’re doing the best we can to protect our family,” she said.

Getting Bentley home did not end the fight. He had a Medicaid waiver before entering residential care, but the waiver is suspended while a child is in residential placement, and restoring it proved its own battle. His former home health care agency, which the family had used since he was young, declined to take him back, citing safety concerns about their living situation — the family has spent the past year in a camper while their home, built by hand, nears completion. Stacy went through orientation and skills training to become his home health aide herself, only to be told afterward that the agency would not accept him as a client at all. “That was very, very upsetting,” she said, “some of these people we’ve worked with since he was little, you know, they were like second family to us.”

Then a change unrelated to Bentley’s needs nearly cost the family the waiver altogether: Stacy got married, and her husband’s income counted against the family’s eligibility. “Unfortunately, we fell on the great crack of them restructuring the waiver,” she said. She called repeatedly trying to get it reactivated until a longtime contact at Family to Family connected her with the head of Indiana’s waiver program. “His waiver was reactivated within two weeks,” she said. “It was a miracle, a miracle.” Bentley remained on Medicaid throughout the ordeal because he was still a ward of the state until the case closed, which kept his doctor’s appointments covered. Stacy said the family cannot rely on her husband’s employer coverage. “His insurance doesn’t cover anything Bentley needs,” she said. “They don’t cover ABAs. They don’t cover home care … None of it. So, it’s not going to work for Bentley, right? So we need this waiver, right? We have to have this waiver to survive.”

By June of 2026, Stacy had weaned Bentley off the antipsychotic medication herself, a process she says is typically done under a doctor’s supervision in a facility. “The help out there is just not what people think,” she said. “I see all these stories of, you know, mental health crisis and these kids struggling and these parents are like, we need help. We need help or get them help. I hear get them help. Why didn’t you get them help? [But] what is the help?”

Bentley is doing well right now, with decreasing aggression, but Stacy’s fear is constant. She cannot work outside the home because of his needs, relying instead on $16-an-hour home health care pay along with her husband’s income as a truck driver. Their waiver reauthorization is due in October. “It’s a lot of pressure,” she said. “Cause if I lose that, it’s like, what are we going to do? You’ve worked so hard to get to a point where things are settled.”

Asked what she would tell lawmakers, Stacy didn’t hesitate. “They need to step in our shoes, they need to get a grasp on what it’s really like because they don’t have a clue,” she said.

Stacy’s fight is not unique to her family. Across the country, parents of children across the nation with complex behavioral health needs are told the same thing at every turn — that there is nowhere for a child like theirs to go. Keeping them safe at home depends on a patchwork of coverage that can be undone by a hospital stay, a marriage, or a restructured waiver. As Stacy put it, “We’re just regular moms and dads, and we’re trying to love our children and do the best we can for them.”