Within 3 days, he spoke so rapidly you had to watch his lips to understand everything he said. He slept 2 or 3 hours a night and had boundless energy. He pronounced himself “hippy-happy.” Within 5 days, he began to see things that no one else could and became agitated easily. I held my breath. In the past, “hippy-happy” had turned into instances when he thought there were conspiracies against him and other times when he threatened me or his younger brother. This time, we were lucky. He trusted my observations and those of other people he felt close to and resumed the medications after 12 days. For him, medication turned the switch back to normal speed and shifted his reality back to where it meshed with other people. But what if that hadn’t happened?
There is an emotional debate going on in mental health circles across the country right now about Assisted Outpatient Treatment (AOT) which compels people over 18 with mental illness and who are considered a safety risk, into treatment. On one side are those who are worried about preventing shootings like those in Newtown and Aurora, who point out that compelling treatment is better than jail. They believe there needs to be a process where someone with a serious mental illness can be ordered by a judge into treatment. On the other side of the issue are those who worry that such a law can take away the self-determination and independence of people with mental illness. There is little common ground.
What do parents of young people think? With some exceptions such as Liza Long, much of the debate about AOT has been waged by adult consumers, mental health professionals and legal groups. If we want changes (or not) that work for us, parents of young people need to weigh in.
Young people are living at home in droves. And not just young people with mental health or behavioral health issues. In 2012, 36% of the nation’s young adults ages 18 to 31 were living in their parents’ home, according to a Pew Research Center analysis, the highest percentage in at least four decades. A great many have remained on their parents’ insurance as well. Their day to day lives are intertwined with their parents, their siblings and often extended family as well. This has become the new normal in America.
Parents of children and teens with mental health needs are used to being involved. They work for years to become knowledgeable and effective champions for their children. They fight for services in IEPs, advocate with insurers, stay on top of treatment and push for access. As a colleague puts it, one day our children go to bed age 17, wake up age 18 and are supposed to be in charge of their treatment and navigate an unfriendly maze of services. Parents are suddenly to be both not seen and not heard. This is dissimilar to families where a young person has a chronic health condition; for them, it is considered a good practice for parents to stay part of the team while slowly relinquishing management of their child’s illness.
Parents make decisions based on what is best for the entire family. When my then-19-year-old son went off his medications, I worried about the impact on his 16 year old brother. Many families of young adults with mental health needs have other children living at home too. It’s your job as a parent to think of the needs and safety of each family member. Much of the debate about Assisted Outpatient Treatment is focused on rights or needs of the individual while parents always balance what’s best for the family with what’s best for each son or daughter.
Many families I know have used the courts to access treatment for their minor child. Massachusetts has recently reformed its status offense laws (Children Requiring Assistance) but parents are still urged to file a petition saying their child is out of control by schools, therapists and relatives. While it is a last resort and can produce mixed results, families are often comforted by the simple fact that there is an option they can turn to. A number of parents of young adults have wished for a similar option where they have the ability to petition for services when they are desperate.
If my family were a game show, it would be Let’s Make a Deal. We talk, we negotiate, we talk some more. When my son went off his meds (the first time; yes, there were other times), this worked for us. I talked, he argued, I listened, he did too. But every family is different. Luck plays a part as well. He had a long relationship with his psychiatrist and trusted her. His relationship with his brother was good at that point and he listened to his input. At another point in time, none of this might have been true.
Forty-five states have laws that permit the use of AOT. Massachusetts is not one of them. I have always been firmly in favor of stopping anything that lessens someone’s rights, especially their right to choose for themselves. But if my older son’s rights are in conflict with my younger son’s safety, my advocacy hat comes off and my parent hat goes immediately on. Parents of children with mental health needs have to make tough decisions that are right for their family every day. It’s time for us to weigh in on this issue too.
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Lisa Lambert is the executive director of Parent/Professional Advocacy League (PPAL) and a Children's Mental Health Network Advisory Council member. Lisa Lambert became involved in children’s mental health as an advocate for her young son in 1989 through the CASSP family network in California. After moving back to Massachusetts, she began supporting families whose children and youth had behavioral health needs. Her areas of expertise include mental health policy, systems advocacy and family-driven research.