“Find help yourself” – Family fights Iowa mental health system for 10 years

CLINTON, Iowa -- Gracie Nelson has a binder filled with her family's struggles from the past 10 years. The documents that don't fit in the binder go into one of several crates stashed underneath her living room coffee table. Collectively, these papers represent years doctors' notes, rejection letters, and other records all in an effort to get her son, Tyler, the mental health treatment he needs. Yet, Gracie said the system that was designed to help them has fallen short.

Some of Gracie's frustration is with Iowa as a whole. Some of it is more specifically with Clinton County. This case is complicated, but between the state's Medicaid program and the county's Department of Human Services office and the County Attorney's Office, the Nelsons have fallen through the cracks.

Mental health is a tricky subject. Some mental health facilities won't take some people depending on the severity of the diagnosis. Other facilities need special court orders. Ultimately, it comes down to finding the best place for the child and finding the money for that treatment.

Related: Why Iowa's shortage of child psychiatrists is taking a toll on QC community

Tyler Nelson

"He held the knife to my throat," Gracie said. "At that point, I knew I was seriously in trouble."

Gracie was held at knife-point by her own step-son, Tyler. Last year, he threatened to rape and kill her. He injured her other children, and he tortured the family dog. Now, the family fears they will have to try to live through this again.

Tyler is a child with an illness. He's not a monster. According to Dr. Thomas Millard at the Cornerstone Wellness Center, Tyler suffers from multiple mental health disorders stemming from birth. Among these are Autism Spectrum Disorder, Attention Deficit/Hyperactivity Disorder, Paraphilic Disorder and Conduct Disorder with severe sexual aggression toward others. Dr. Devin Borgman at Life Connections also said Tyler suffers from Conduct Disorder and sexual aggression.

When Gracie married Aaron 13 years ago, all they knew was his Autism diagnosis. When they got custody of Tyler 10 years ago, they tried getting him help. However, things really changed in 2012.

"One day he just decided he was going to take me out physically," Gracie said. "He owned me, he could do whatever he wanted to me... he raised his fist to me."

Tyler was sent to Tanager Place, a Psychiatric Medical Institute for Children (PMIC), in Cedar Rapids in 2013. However, Gracie said the government-funded institution does not handle severe cases, and Tyler was able to slide through the system.

"He got discharged in August in 2015, and October 15 is when he told his doctor he wanted to slit my throat," Gracie said.

Aaron Nelson, Tyler's father, said they just want to get him the help he needs.

"I love my son," Aaron said. "I want to get him help, but at the same point, I have to protect society from him as well because he's going to hurt someone if he's not treated properly."

Related: Judge issues gag order for Iowa family, mental health help postponed

Finding the right mental health facility

After Tyler was discharged from Tanager Place, few facilities would even accept him. Although the Nelsons have searched for the proper place for Tyler, they have been rejected from almost every facility.

Boys and Girls Home Residential Treatment Centers, Inc., wrote, "Since he has already been in a PMIC before, I do not believe he would benefit much more from our program."

Tanager Place denied a second admittance, saying "Due to his ongoing sexualized behaviors, it appears he is in need of a program specializing in that area of treatment."

Another PMIC, Orchard Place in Des Moines, recommended The STOP Program or Woodward Academy. Those places, along with Tyler's current housing at Piney Ridge in Waynesville, Missouri, all specialize in Sexually Aggressive Youth (SAY) programs.

Medicaid

Tyler's SAY treatment at Piney Ridge used to be covered by AmeriHealth, one of Iowa's three Medicaid providers. When AmeriHealth left Iowa in 2017, Tyler's treatment was rolled into another provider, Amerigroup. His needs were re-assessed by the new company, and funding stopped in late June 2018.

It was either bring Tyler home, where he was an active threat to his family or get charged for child abandonment in Missouri.

"Amerigroup's language would be that they look at medical necessity," Paul Smith, director of Piney Ridge, said. "Depending on how SAY issues are represented, it may or may not meet what they use to consider a medical necessity for psychiatric treatment."

Most SAY programs require private pay or state backing. Tyler had state backing with AmeriHealth, but now that Amerigroup is representing him, he doesn't qualify. Even though the Nelson family has private insurance, these institutions want the money up front or mandated money from the state.

We tried talking to Amerigroup through several calls and emails, but the company has not returned any questions.

After a few harrowing days, Amerigroup decided to fund Tyler temporarily. The Nelsons are still unsure if Amerigroup will continue to help or suddenly drop them. On a middle-class income, the Nelson's only have one option - they need state help.

Iowa Department of Human Services

"We've literally had DHS tell us that the only way they're going to help us is if my wife is in a hospital or in a body bag," Aaron Nelson said.

One way to get state-backed funding is having the Department of Human Services (DHS) to take the case in front of a judge. If the judge says yes, then Amerigroup would have to help pay, and a place like Piney Ridge would keep Tyler.

In order to decide if a case should be taken to a judge, the DHS files a Child in Need of Assistance (CINA) report. There are several ways that a CINA could be approved, all of which are found in Iowa code chapter 232.2, section 6. Three of these include:

  1. Who is in need of medical treatment to cure, alleviate, or prevent serious physical injury, or illness and whose parent, guardian, or custodian is unwilling or unable to provide such treatment.
  2. Who is in need of treatment to cure or alleviate serious mental illness or disorder, or emotional damage as evidenced by severe anxiety, depression, withdrawal, or untoward aggressive behavior toward self or others and whose parent, guardian, or custodian is unwilling to provide such treatment.
  3. Whose parent, guardian, or other custodian for good cause desires to be relieved of the child’s care and custody.

First, let's unpack the circumstances.

In the first case, a family would need to prove the possibility of "serious physical injury." Dr. Thomas Millard, a psychologist at Cornerstone Wellness Center in Clinton, wrote in a report, "In my opinion, [Gracie] is at risk for an attempted homicide or rape by Tyler."

The second case talks about "serious mental illness," which has already been established by Dr. Millard as well as the rejection letters from mental health facilities.

Although the Nelsons are not "unwilling," they are "unable" based on the level of payment required and the necessity of having state-backed funding. The second case does not include the word "unable," so it is possible the code only allows for "unwilling" parents for mental health issues.

Finally, the third case has been made apparent by Dr. Millard's report.

"It is inexplicable to me that since that since that time he has not been placed for a long-term treatment," his report states. "It is imperative that all caretakers, agencies and other professionals working with TJ understand that failure to provide intensive residential treatment for him is putting Gracie, and potentially others, in danger."

Matt Highland, public information officer for the Iowa DHS, was unable to talk about this code. He forwarded us to Vern Armstrong, division administrator of field operations.

"CINAs are usually for child abuse. Kids who need treatment," Armstrong said. In response to a child's on-going mental health issue, he said "We've used a CINA as a last resort."

Nonetheless, the code shows circumstances in which a child would need assistance due to their own mental health issues or violent tendencies.

The Nelsons have met with the DHS to attempt a CINA twice.

The first time, they were rejected by caseworker, Melissa Housenga. Gracie said Housenga told them, because they were parents, they couldn't be victims.

A second home visit from Grace Oldsen, another caseworker. The Nelsons said Oldsen told them it was typical adolescent behavior, and from what Gracie said, "that I should just buck up or leave."

"She actually looked at me and said I should choose between my wife and my son," Aaron Nelson said.

The CINA was denied a second time, even though they meet three possible criteria. When they finally got assigned to the Scott County office after intervention from the Iowa Attorney General's Office, their case was immediately processed.

"It doesn't necessarily happen very often," Armstrong said about switching DHS county offices.

Clinton County Attorney's Office

According to state code, the county attorney does not have to be involved in a case like this. Chapter 232.87, section 2, states, " A petition may be filed by the department of human services, juvenile court officer, or county attorney."

"(Every interaction) has been negative," Gracie said. "Fine help yourself. You have insurance. Period."

The Clinton County Attorney is Mike Wolf, and the assistant attorney, who the Nelsons have spoken most with, is Cheryl Newport. Newport did not comment when contacted, and Mike Wolf responded: "out of respect."

"I can't acknowledge that such a case even exists," Wolf said. "It's too dangerous to talk about anything."

After several attempts, the Nelsons contacted the Iowa Attorney General's Office. They will have a representative process their case.

"I would say it's relatively rare," Armstrong said about getting the attorney general involved in a county issue.

What the family faces now

After a decade of increasing danger and little assistance, a hearing is finally set for September 20. The Nelson's case has moved forward, but only after working with a DHS office outside of their county and the state's attorney general office.

"I didn't file the CINA so I could get rid of a bratty kid," Gracie said. "we're not trying to pass him off on someone else and make them their problem. He needs long-term care."

The hearing will determine if the Tyler gets that care or will have to come home.

Editors note: These corrections have been made to the story: Tyler's age was first stated as 15 years old. This was removed. He is currently 17. The first story said the Nelsons have been married for 10 years. It's been replaced with 13. They gained custody of Tyler 10 years ago. The first story also said the CINA assessment only had once case worker come to the home. There were two, and both times, the family was denied.