CAPES – A Mental Health System that Works for Families
“When everybody is sitting at the table – a psychologist, a pediatrician, a psychiatrist – you have better outcomes for the patient,” Dr. Mary Rineer said. “The parents are no longer delegated to be ‘the keeper of the knowledge’ as they go from one profes
J.T. threw a computer off of his teacher’s desk. He stuffed the school toilets with toilet paper and flooded the bathroom. He stole the teacher’s cell phone. Any small stress would send him flying into a rage. This was all before J.T. was even 7 years old.
His mother, Rhonda Allen, was at the end of her rope trying to help J.T., whom she and her husband had adopted when he was 3. “We were told he was autistic,” she said. “At one time he was on 21 different medications.”
Despite the medications, J.T.’s behavior wasn’t improving. “All of these specialists in town were telling us that there was nothing more they could do for him,” Rhonda said. “They told us we should institutionalize him.”
But Rhonda wasn’t ready to give up on her son. “He’s this tiny 48-pound kid,” she said. “I couldn’t just drop him off and abandon him. He’s a human being. I asked them [doctors] to refer me to someone else. I was even willing to go out of state.” But there was nowhere to refer the family.
Heart-broken, with nowhere to turn, Rhonda decided to quit her job as a speech therapist so that she could stay home with J.T., even though it was a financial hardship for their family. Then an acquaintance referred her to CAPES, and their lives changed.
CAPES is the brainchild of Mary Rineer, Ph.D., a Tulsa psychologist. CAPES (Child and Adolescent Program Enrichment Services) is a non-profit which brings a team of medical, behavioral and educational experts together to provide a comprehensive dynamic approach to help children and adolescents who suffer from mental health, behavioral, medical and/or educational issues. The idea for CAPES arose from the desire to use a more holistic approach to the problem of mental health in children and adolescents.
Dr. Rineer invited other professionals including Dr. Christopher Puls, a psychiatrist and director of behavioral health at Morton Health Services, and Dr. Kathleen Coljack, a pediatrician, to create a team approach to help families struggling with children who have a difficult or multi-faceted diagnosis.
Besides the benefit of having multiple specialists meeting with the family, the team members benefit from the collaboration with their colleagues. “I think we listen with the ear to which we’ve been trained,” Dr. Rineer said. “We all hear something different. When parents come in and tell us their story about their child, we put it together as a team. We look at the child’s history, written documentation, current statistics, and ask how this would look like if it was resolved.”
Rhonda made an appointment with CAPES and within two weeks she and her husband were having their first meeting with the team.
“It was a little intimidating as a parent to go into the conference room,” she said. “You think, ‘All these people are here to hear one person’s story?’ They let us talk for an hour,” Rhonda said. “They listened. We couldn’t believe that all these specialists were listening. They were having an open dialogue, consulting right there, and then talking to us about what they thought. They didn’t know if J.T. could get past it, but they said, ‘Here are some things you can do.’ Nobody ever said that.”
The CAPES team explained to Rhonda and her husband that because of early abuse and neglect, J.T. had never had his emotional needs met and, therefore, had never developed the coping skills he needed to deal with stress.
Because of his experience with a child similar to J.T., Dr. Puls wanted to try a very small amount of a medication that had been successful for the other child. Rhonda was concerned because J.T. had been on the medication before and had suffered an allergic reaction that landed him in the hospital. But the amount J.T. had been on was 10 times the amount Dr. Puls was recommending, so Rhonda agreed.
“It was a 180 degree turn around,” Rhonda said. “He was a different child.”
Rhonda told the team that their number one goal was to have J.T. stay at school. With that goal in mind, they developed a plan for J.T. and his family.
“Dr. Rineer went to his school,” Rhonda said. “She talked to the teachers and developed an education plan with the help of an education specialist. She didn’t have to do that, she isn’t getting paid to do it, but she took the time.”
Rhonda said that it was obvious to her that the doctors also were consulting with each other in an on-going way about J.T. in between visits.
“Collaboration like this normally just doesn’t happen,” Dr. Coljack said. “If I call [another professional] about a patient during the day, it’s not ideal. The doctor’s other patients have to wait while we’re consulting, and collaboration takes effort and time.” Because the CAPES professionals already have a relationship and have already consulted as a team, communication is much better than it normally is in the healthcare community.
In addition, Dr. Coljack pointed out that even though pediatricians are often the first contact a parent will make, many pediatricians aren’t comfortable with providing psychiatric care since their training is limited in that area. Having a psychiatrist and a psychologist to confer with not only helps the patient and the patient’s family, but it helps the physician make a better diagnosis.
“When everybody is sitting at the table – a psychologist, a pediatrician, a psychiatrist – you have better outcomes for the patient,” Dr. Rineer said. “The parents are no longer delegated to be ‘the keeper of the knowledge’ as they go from one professional to another.”
The CAPES’ professionals say that they learn from their colleagues’ expertise and experience, which makes them better diagnosticians. While the healthcare system isn’t set up to support taking a lot of time with each patient, or to collaborate, the CAPES team does it anyway.
“I don’t have to do it.” Dr. Puls said. “I do it because it’s the right thing to do.”
“In an ideal world,” Dr. Coljack said, “you would have a group like this. They would be very familiar with all resources available to patients and anybody in town could refer to that group of physicians. That would be ideal.”
Rhonda said that CAPES saved J.T.’s life. “He’s on grade level with math and reading,” she said. “He still struggles, but I’m not worried that I’m going to have to take care of him after he’s 18. I think all the time, I don’t know what would have happened to him without CAPES. What would have happened to us? You just can’t give up.”
And, because J.T. is doing so well, Rhonda was able to go back to work.
“Yesterday,” Rhonda said, “I was driving with J.T. and I reached over and tickled his back. He looked over at me and said, ‘It’s OK. You can hold my hand if you want to,’ so I had one hand on the steering wheel, and I held his hand with the other until we got to where we were going.”