Excruciating Choice: Trading Parental Custody For Mental Health Care
One of the worst moments in Eileen’s life was the day she called a local Chicago hospital to tell them she refused to pick up her 15-year-old son after he was discharged. He was in the hospital for psychiatric care, one of many visits over his young life.
It’s hard to imagine why someone who loved being a mom would decide to refuse to pick up a child who had been discharged from a hospital. But it was a painfully logical choice.
Across the country, and especially in Illinois, it can be incredibly difficult to get psychiatric services for a child, let alone pay for them. So when a parent has a child that needs psychiatric help, that parent sometimes make an excruciating choice to give up custody.
The reason these parents abandon their children is because once the state becomes the child’s legal custodian, the state is forced to provide the mental health care the parent couldn’t access. According to the most recent data available, about every four days in Illinois, a parent gives up parental custody to get critical mental health services for their child.
Because psychiatric history can be sensitive, especially for juveniles, we aren’t using last names in this story.
Becoming Noah’s mom
Eileen fell in love with Noah the first time she saw him. She said he was born premature, with drugs in his system and was transferred to the neo-natal unit where Eileen worked as a nurse. Noah had big beautiful eyes and was so tiny Eileen could hold him in the palm of her hand.
It broke Eileen’s heart to find out Noah was abandoned; his parents never picked him up, never even visited. When the hospital called the Illinois Department of Children and Family Services (DCFS), the nurses were told there wasn’t an appropriate foster care option for the baby, so once he left the hospital, he would be going to a nursing home under the care of DCFS. The nurses in the prenatal unit were appalled.
“So we’d joke around, ‘Who is going to take him?’” said Eileen.
Eileen lived in a tiny Chicago apartment - a third floor walk up. She was single and worked a lot. Because Noah was drug exposed, she knew he might need all kinds of special attention. Her friends and family thought it was an absurd idea for her to adopt him. But Eileen had this feeling: this baby should be her son.
“He was a really good baby. He would come up with his own little sayings. When he was happy, he would say, ‘Diddle, diddle dee’, and it was hilarious. No one knows where he got it from,” Eileen said.
As Noah got older, Eileen noticed Noah had lot of energy, and not just your average kid energy-- it was way beyond that. He was literally ‘bouncing off the walls.’ He’d run down this long hallway and throw himself against a wall and bounce off, falling on to the floor. He did this over and over.
“That hyperactivity turns into irritability, because they are so tired and then that irritability turns into anger. And the anger turns into obsession, and it just builds on everything,” said Eileen.
Sometimes the only way to soothe Noah was to put a pillow on top of him and lay on him, said Eileen. There was something about the pressure that comforted him. By the time he started elementary school, Noah was throwing epic fits. Once he unbuckled himself in the car and started hitting Eileen. She had to pull over to the side of the road for hours to calm him down enough so she could drive. Sometimes his moods would become so angry or so manic that she had to take him to the emergency room for help.
A struggle to get mental health care
Noah was regularly seeing a therapist. He also started taking medication. Eileen said it helped Noah get better.
But prescribing psychiatric medication to a younger person is difficult. Like any growing adolescent, Noah’s body weight and hormones were constantly fluctuating. Something that worked one month, would be fail a couple months later sending him into tailspins. That meant Noah’s medications had to be tweaked often.
Because of Noah’s adoption, therapy and psychiatry were covered by Medicaid. But not many child psychiatrists take Medicaid, so every time he needed his medication changed, it was very hard to get an appointment.
“Sometimes we’d wait months to get in, and you hoped in the meantime you didn’t have another ER visit,” said Eileen.
Noah was sent home after some ER visits, other times he was admitted to a psychiatric hospital.
But as Noah got older and bigger, his outbursts were more frightening.
“There were times when I would lock myself in the bathroom. There were a couple of times when I went out to the car, figuring I was safer. If he destroyed the house, at least he wasn’t hurting anybody.”
Noah started saying he might hurt himself, and doctors suggested Noah get more complete and constant wrap-around services in the home. Eileen considered several options, including after-school help and temporary residential care.
But Eileen wasn’t able to get any of that -- the afterschool help, the residential stays -- covered by Medicaid or any other state service. And she says she was already spending more than she could afford.
She estimates that before the age of 15 Noah was hospitalized about 30 times. Sometimes he’d spend as long as six weeks in a psychiatric hospital-- that’s weeks without school, sometimes weeks without going outside. Psychiatric hospitals are meant for very short term care, they aren't designed for kids to stay so long.
“You feel horrible. You feel like you failed. You feel guilty,” Eileen said.
Eileen was at a complete loss. The stress was straining her new marriage, and the chaos was hard on her new daughter. She knew what Noah needed, but she couldn’t give it to him. So she just kept using this kind of treatment she knew was inadequate -- emergency rooms and psychiatric hospitals.
When things finally reached a breaking point, an option Eileen never thought she would consider appeared.
Eileen was working with someone from DCFS and Catholic Charities, to figure out Noah’s care. Both of those workers told her that maybe it was time to consider a last resort, something called a “psychiatric lockout.”
Here’s how it works: If a child goes into a hospital for psychiatric care, the parent has to refuse to pick the child up. The hospital may call and call and call, but the parent just says, ‘I’m not coming.’
It may sound cruel, but there’s a goal: once the parent refuses to pick-up her child, DCFS takes custody of that child. That means, legally, Illinois has to give the child the mental health services he requires. If Eileen did this with Noah-- he’d get to go to a residential program --one of the services the state was refusing to fund and that Eileen couldn’t afford on her own.
But a psychiatric lockout also meant Eileen would lose custody. She would no longer be Noah’s legal mom.
It felt like an impossible choice to Eileen. She talked to her parents and friends, everyone said the same thing: getting Noah care had to be the priority. She says even a worker from DCFS advised her to do the lockout. The only person who didn’t understand was Noah.
“He wasn’t happy with me. Especially at the beginning, he was like, ‘You said you would never do this to me. You said you would never give me away.’ It’s heart wrenching. He is believing I’m sick of this and I want him gone,” Eileen said. “I would just keep saying, ‘ I love you. You are my son and I will never ever turn my back on you. We are doing this cause you know you need to be in residential treatment.’”
In June of 2014, Eileen made what she thought was the only choice she had left. Noah went to the hospital and Eileen refused to pick him up. DCFS took over Noah’s care and he was given residential services, one of the services the state had been refusing to fund.
Even If Noah felt abandoned, Eileen says she was still there, trying to act as much like a mom as she was allowed. Eileen followed the car that took Noah to the residential program, because, who else was going to drop off his clothes? Who else was going to give nurses a detailed medical history?
The situation caused problems for Eileen beyond just her relationship with Noah. The state took her to court.
The judge told her she could be charged for neglect because of the lockout, and that meant she could also lose her daughter and have her nursing license taken away, said Eileen.
“So not only was I in fear of losing my son, losing my daughter, I was also in fear of losing my livelihood. So I am going to have no kids, nothing. All because I wanted to get my son help,” said Eileen.
Illinois law attempts to stop lockouts
That year, 2014, 103 Illinois parents did psychiatric lockouts. That's the most since 2010, the farthest back year WBEZ was able to obtain records. Lawmakers agreed it was a crisis and passed a law to try and stop lockouts from happening at such high rates.
The law is complicated, but it boils down to this: No parent has to give up their child, in order to get them mental health treatment. The state has to find a way to help without forcing the parent to give up custody. The law unanimously passed in 2014 and went into effect on January 1, 2015.
But many of the people who deal directly with these families, from service providers, to lawyers, say they haven’t seen any concrete actions from the state. And according to the most recent records available, the number of lockouts has barely slowed down since the law passed.
John Schornagel heads up a governmental body called Community and Residential Services Authority. One of the things it does is help families who are at risk of doing a lockout.
“From my perspective [the law] hasn't been implemented at all. And they haven’t implemented a practice or play for how these families can be rerouted to get different outcomes.”
Under the new law six different state agencies, including DCFS and the Department of Healthcare and Family Services, were supposed to make a plan about how they would work together to help families get mental health help and stop lockouts.
As of Tuesday evening, nine months after the deadline set in the law, and after months of questioning by WBEZ and mental health advocates, did those agencies finally sign an agreement about how to move forward.
The agreement has not yet been publicly released. WBEZ will update the story as more information is available.
A reunion but emotional toll
In Eileen’s case it could have turned out much worse. With the help of a lawyer who specializes in lockouts, Eileen avoided neglect charges and won back custody. Noah got put into a residential program, where he got intense services.
Noah and Eileen continue to deal with the emotional fallout of the abandonment. But Noah’s supposed to come home from residential care in about a month and Eileen says she’s hoping now he’ll get to do regular teenage things.
“He’s never been to a dance. He doesn't have a group of friends. He doesn’t drive. He has never been to the movie with friends. What if we gave him that? What if we gave him a chance to be a regular kid? What would he do?” she said.
Noah will still need mental health services once he’s out. And Eileen’s not so sure the kind of community services he needs long term will be around. She says having strong available services will be key to helping kids stay with their families. But Eileen says right now, the whole mental health system looks pretty threadbare, and Illinois’ budget woes don’t give her much hope.
In the meantime, lockouts continue at the pace of about two a week.