Effective case management: Lessons learned the hardest way
Transition plans are critical for kids with mental health issues as they move in to adult services. Every parent I work with whose child is 16 or older hears me preaching on this issue and helping them work on a transition plan. It’s crucial.
I lost my son, Josh, as he transitioned to adult services. Josh actually had case management as an adolescent, but there are a few reasons why it failed him when he turned 18.
Legal status
On his 18th birthday, Josh became a legal adult. All of the decisions legally became his own. The law doesn’t take into account that adolescents with severe and persistent mental illness (SPMI) have a disease that affects their thought process and behavior. Besides the 18-year-old brain being biologically underdeveloped across the board, kids with SPMI have lower levels of maturity than their non-disordered peers because of their disease. They understandably want the same things their peers have, but they are often ill-equipped to handle their new-found freedoms – yet the law says that they are. When I was young, the age of majority was 21. Those extra years make a difference. It gives the brain three more years of growth and development.
Wrong advice
Treatment professionals need better information about the intricacies, gaps, and needs for the transitioning adult. Josh had a case manager until his 18th birthday. When we talked about a transition plan, she asked, “Do you want to seek legal guardianship?” We asked her to clarify why we might want or need legal guardianship. But she didn’t really understand it herself. Her explanation hinged on helping him manage his finances. At that time, Josh had a part-time job, and we were already helping him manage his money while teaching him budgeting skills, so having legal guardianship for financial management wasn’t a good fit for us. The case manager never mentioned that we would lose all input on his mental health treatment, which we had been an integral part of since we adopted Josh 10 years earlier. So, on his 18th birthday, we were completely cut out of the treatment team process.
No continuity of service structure at age 18
The big problem is in not having cross-over services once a kid turns 18. Nobody was available to help us navigate the adult world like we had with the youth/adolescent treatment world. There’s no system of care in adult services because authority is transferred to the 18-year-old as the legal adult. Parents are no longer the driver of the treatment bus. We were used to the semi-well-oiled machine of youth treatment services and that was literally gone in the blink of an eye. The adult service world was extremely unfriendly to parents who wanted to remain involved in their mentally ill child’s life.
Parents are no longer the driver of the treatment bus.
I recall our first visit to the adult service providers for Josh. It was clear that we were not welcome, despite Josh telling them that it was fine with him. Their response was that Josh was now a legal adult and had to take responsibility for his treatment plan himself. The fact that he had rapid-cycling Bipolar Disorder and severe learning disabilities that impacted his cognitive reasoning and ability to assume adult responsibilities wasn’t considered. If he didn’t show up for an appointment, we weren’t informed. If he stopped taking his medications, we weren’t informed. Even though he was living in our home and on our private insurance plan – which, by the way, he lost when he dropped out of community college at age 19 after having lost his Medicaid on his 18th birthday. Adult treatment professionals seem content and intent on clearly dividing parental input and pushing the child into the harsh adult world.
Today’s adult services includes limited use of a care coordinator, which can be helpful but in my experience something more is needed to have successful outcomes. I believe it would be more effective to have a service definition for a Transitions Case Manager who would work with the young adult and parents when a youth becomes age 17.5 until age 21 to help them navigate this new maze in the mental health world. Many times, the serious mental illnesses don’t present in childhood and are diagnosed between the ages of 18 to 21. Mere care coordination isn’t adequate to provide the young adult and family members with the navigational assistance and supports needed.
If the state is unable to implement a service definition for transitions case management, then we need to develop other options and resources to help families.
Navigation while transitioning is crucial. If the state is unable to implement a service definition for transitions case management, then we need to develop other options and resources to help families. Better funding support for nonprofit organizations who provide services and supports to families might be a cost effective option for consideration. Case management is a big part of our jobs as family advocates at Mental Health America of the Triangle. It might be cheaper and more effective to have trained parent partners who have already experienced the process to be the ones assisting other parents and young adults through the transition process. It could feel less clinical and more supportive to the parents and their young adult child than having a clinician or case manager provide the service.
When thinking about case management services, the vocational rehabilitation model within the school system is worth taking a look at. When high school students with an Individual Education Plan (IEP) turn 16, a vocational rehabilitation counselor begins attending IEP team meetings to discuss transition plans. I think it might also be effective to have a trained parent partner/family advocate assigned to parents of students with IEPs to offer case management-like services, which could result in more effective transition plans that provide systems navigation and connection to vital community resources.
Editor’s Note: To read Julie’s account of losing Josh, her story starts on p. 49 of the journal North Carolina Insight, which you can access here.