Over the past couple of days, I have been following along with the congressional hearings of the House Energy and Commerce oversight subcommittee on mental illness and violence, being held in response to the December 2012 Newtown, Conn. shootings. I have read a number of stories, essays and blog posts by parents who are participating in these discussions.
These stories are not unlike my own. They speak of loving parents who want nothing more than to give their children the care, the treatment and the programs that best support their mental health, while keeping them safe and alive. Some of the experiences are far more challenging than my own. All of the stories identify numerous attempts to partner with the doctors, treatment teams, insurance companies, police agencies and support organizations to ensure that their child’s needs were being met. In many of the cases, similar to my own, roadblocks and policies create scenarios where the parents are not privy to the information regarding their child’s care.
These blocks only become increasingly more prevalent as the children reach an age of “maturity” as defined by law. For me, once my son turned 16 years old, even though he was still considered a minor, his treatment teams would often cite “patient confidentiality” as a block to me fully understanding the depth of his pain, the extent of his safety or lack thereof.
The bigger issue arises when our children reach 18 years old and are then considered legally an adult. This classification is extended to all people regardless of their mental health. (A parent can attempt to become a Mental Health Legal Guardian, if they can prove that the child is not legally competent). Short of going to court and proving that the child lacks the capacity to make legal decisions for himself due to “a lack of meaningful understanding of the nature of his situation due to a chronic, severe mental illness”, parents have no legal right, under the current law, to medical information pertaining to their adult child’s health and well-being. That is, unless the child signs a HIPAA release form consenting to share the information with his/her parents. Often, the child is unwilling to do so. In one blog post I read, a parent shared that after their child successfully ended their life, medical records showed that a HIPAA release had been signed and yet the doctors and treatment team still refused to share any information about the care, observations of progress or the potential suicide risk.
As I read these stories, it became obvious that even though parents can assertively request information, demand meetings, attempt to partner, seek support and escalate up and down the chains of command, the system is still set up to fail. Some are more successful than others in moving the needle towards partnered care, but ultimately, this requires more than just “fighting ” for support. This requires a change in the laws, in the policies and in the training and accountability of the hospital staff working together with the families to ensure that the proper and necessary levels of care are available and provided to each and every patient with a mental illness diagnosis.
How many “Newtown Shootings” and how many children falling through the cracks and taking their own lives will need to occur before the necessary changes are made to this inadequate system? Maybe the answer is right in front of us… “The answer my friend is blowing in the wind, the answer is blowing in the wind” (Bob Dylan)
Would love to hear your thoughts on this!
Thank you all for your continued support, your stories and your feedback!
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