Aging Out of Treatment: A Mother’s Fear

By Leisl Stoufer

Today, our son, Cody, turned 17. Seventeen. Just like any other teen on his birthday, Cody is excited. He is growing up, and he knows he is one year away from the magical year of 18.

Eighteen.

When Cody thinks about 18, he sees independence and the freedom to make his own choices. He sees nothing but promise as he imagines the possibilities for his future. Today, he is just one year away from that reality. For Cody, this is a very happy day.

I wish I felt the same. Instead, I feel afraid.

On one hand, I share Cody’s enthusiasm. I  see promise. For the first time in several years, Cody is doing well in school, he has started a part-time job so he is gaining work experience, and he is considering what life will look like after high school. Cody is thriving. There is definitely promise.

But on the other hand, I feel dread. Fear rises in my chest and tears sting my eyes. I am scared. I am sad. I am angry.

Today we are one year away. This is it. We are running out of time.

Cody has bipolar disorder. After years of frequent hospitalizations, terrifying phone calls to the police and a constant battle for care,  he is finally receiving treatment. He is living in a treatment center. There won’t be a birthday cake this year, and we won’t get to celebrate. A deep sadness fills my my heart, but our family is blessed because we are receiving care. Many families are not so fortunate. Despite the sadness, we are the lucky ones. Cody is recovering.

But next year, Cody will be 18, and while he sees freedom and independence, all I see is a broken system that will abandon my child and leave him on the streets or in a jail cell to die. Mental illness is not treated like any other illness in this nation. To me, as a mother, mental illness is the only illness that has an age limit for care.

Treatment is hard to come by at any age, but, once a person turns 18, the options diminish for family members to help get treatment for a loved one. Our nation has traded hospitals for jail cells; we have traded compassionate care for the cold, harsh elements of the streets; we have tied the hands of parents and caregivers. Yet somehow we have managed to convince ourselves that these homelessness, jail and sickness are better than treatment; that somehow these options preserve a “patient’s rights.”

I want more. My son and every son or daughter with illness deserve more. No family should fear having their loved one arrested because of an illness. No person should be denied access to therapeutic and compassionate care.  No family should dread the day their child will age out of treatment. Mental illness is an illness and just like cancer, diabetes, or heart disease, treatment should always be available.

Thankfully, there is a glimmer of hope. Last year, in response to the Newtown, Conn., tragedy, Congressman Tim Murphy (R-PA) proposed a bill, HR 3717, The Helping Families in Mental Health Crisis Act. HR 3717 is a bipartisan bill that currently has 115 co-sponsors. It will fundamentally change the way mental illness is treated in our nation.

HR 3717 will give my son and my family a chance for recovery, a chance for continued treatment, a chance for help, and a chance for hope.  It is a comprehensive plan designed to overhaul our failed system, and it is the first bill to focus on accessible treatment for those with the most severe mentally illness.

The Helping Families in Mental Health Crisis Act (HR 3717) includes these provisions:

• Fund pilot assisted outpatient treatment (AOT) programs
• Preserve enough psychiatric hospital beds for patients who need them
• Remove privacy laws called HIPAA that handcuff so parents can get the information they need to provide care for their loved ones with mental illness
• Ensure those with mental illness are not denied access to the best medication and treatment
• Jail diversion: train police and establish mental health court
• Allocate resources for suicide prevention
• Create a deputy secretary for mental health to focus spending on severe mental illness
• Reform the Substance Abuse and Mental Health Services Administration and Center for Mental Health Services
• Reform Protection and Advocacy for Individuals with Mental Illness Programs (PAIMI)
• Strengthen the National Institute of Mental Health

Our nation needs this bill.

When it comes to mental illness we are missing the mark. We sit idly in the comfort of apathy and denial and then wonder why there are so many tragedies. We  cried over Newtown. We watched in shock over the Aurora theater shooting.  We were devastated when Robin Williams took his own life. Every day we walk by someone’s son or daughter left on the streets to die. We watch in horror, but we sit back and do nothing. We are all affected, and it’s time to wake up. It is time to take action.  It is time for a change.

Today, on the day my son turns17, my heart is filled with fear on a day that should only be one of excitement. We are one year away from losing access to care. We are one year away from the harsh reality that if Cody relapses or has a bad day he could be arrested and considered a criminal instead of a young man with an illness. We are one year away from being stripped of our voice in his treatment.

I am scared. I am sad.  I am angry.

Today our son turned seventeen. We are one year away.

#Tb4T

Leisl’s blog can be viewed at her website.