What I Wish I Had Known

1. Understanding State Law on Sharing Information. State laws on sharing health information on minors differ from state to state. In Colorado, minors aged 15 years or older may seek mental health treatment on their own without consent from their parents. When 15-year-olds do so, the federal HIPAA regulations state that the minor has control on whether to authorize the disclosure of the related records, unless state law is different. From here the intersection of state and federal law becomes complicated where in some cases it comes down to the discretion of the health provider.[i] However, this means that in Colorado it is possible that a child of 15 can keep her parents from accessing her mental health treatment records. While we recognized this impending change for Taya, we didn’t understand all the intricacies of this complicated menagerie of state and federal laws.

2. Hospital Options. When we had to hospitalize Taya we had not done detailed research of potential local options. In retrospect, we would have researched the hospitals in our area so that we could have chosen the best one for her rather than be subjected to whichever had an open bed. It would also have been helpful to have a list of emergency options; we were scrambling when we had to take Taya to the hospital after her camping trip and were fortunate to live close to a major children’s hospital.

3. Psychiatrists versus Therapists. These terms were interchangeable to me before Taya got ill, but they are distinctly different professionals who perform unique functions and have specific credentials. It is imperative that they work together to most effectively support the patient. A psychiatrist is a medical doctor who can diagnose mental health disorders and prescribe medicine. A psychiatrist typically refers to a therapist for counseling. A therapist, who typically has a master’s degree and is licensed, provides therapy and counseling.

4. Use of Specialists. We were initially unaware of the availability of specialists, like Nancy White, an “Educational & Therapeutic Consultant” focused on helping families navigate the complicated options available for supporting struggling children and teens. Nancy has an encyclopedic knowledge of programs across the country and advises parents on how to navigate finding the support their children need. For instance, we were unaware that a residential treatment placement is typically needed after a short-term wilderness therapy experience. Nancy is not a therapist and works directly with the parents. Specialists like Nancy can be invaluable for parents sailing through stormy waters far outside of their comfortable harbor.

5. School Advocacy. Jenny was well aware of the importance of alerting the counselors at Taya’s school about her challenges at home. This is especially important with children like Taya where the challenges primarily present at home rather than externally. We later learned that the counselors either did not share our concerns with Taya’s teachers or were ineffective in raising the teacher’s understanding of the seriousness of Taya’s mental stability. In retrospect, we should have been more insistent that our messages reached each teacher and perhaps should have met with each of Taya’s teachers even though she had new ones every quarter.

6. Multiple Challenges. Many of our children face multiple challenges rather than “just” the mental health disorder; this compounds the situation, making both diagnosis and treatment more challenging. Taya was profoundly gifted creating an asynchronous situation between her intellect, which operated many grades ahead, and her emotions, which were at or below grade level. We reached out to experts in mental health and giftedness, finding that those in each field didn’t understand the issues outside their expertise; they saw through their own lens without apparently understanding the other but equally important aspects of Taya. Similarly, there is an emerging understanding of the challenges people with developmental disabilities have in identifying mental health professionals who understand the intersection between mental health and developmental disabilities.[ii] Other challenges that compound a mental health disorder include race, class, gender identity, sexual orientation, physical health, learning disabilities, home life, and much more. While this is a systemic issue, it’s important for parents to recognize the multiple challenges their child faces and try to bridge the gaps between professionals.

[i] https://www.cde.state.co.us/sites/default/files/documents/healthandwellness/download/school%20nurse/understanding%20minor%20consent%20and%20confidentiality%20in%20colorado.pdf

[ii] https://www.socialworktoday.com/archive/092310p6.shtml and https://journals.sagepub.com/doi/abs/10.1177/1044389418756368?journalCode=fisa