Saturday, July 26, 2014

Knock Knock, Who's There?

Law enforcement officers are first responders
for  mental illness.
Photo by leila haj-hassan,
When your child has a mental illness, too often it’s the police

Last night, I was abruptly awakened at 4:00 a.m. by the sound of my doorbell ringing. Confused with sleep, I struggled to pull on a pair of jeans as the doorbell rang again, followed by an insistent knocking.

“Who is there?” I said as I stumbled to the door.

“The police,” a firm male voice responded. “Open up please, ma’am.”

My heart froze. “Where’s my son?” I thought, panicked.

I slowly opened the door to see two police officers. “Can I help you?” I asked.

“Is that your car, ma’am?” the female officer asked, gesturing toward my grey Suzuki.

“Yes,” I replied.

“The door is open,” the male officer said. “Will you check inside and see if anything is missing?”

My heart started beating again. It wasn’t anything serious; my son had just forgotten to close the car door behind him, like he forgets so many things: dishes on the table, cupboard doors open, sometimes even the refrigerator or freezer gaping wide, sending my electric bill sky high.

My 14-year old son has bipolar disorder. For years, he experienced unpredictable, violent rages. The police have been frequent visitors to our modest suburban townhome. Sometimes they have taken him to the emergency room. Sometimes they have taken him to juvenile detention. Every time, my family has been afraid.

This morning, I read a poignant post on helicopter parenting of adult children with mental illness—one that I am afraid will be my experience in a few years. Karen Easter, a Tennessee mom-advocate, wrote this about  her son:
[O]n bad days, when it is apparent he hasn't been taking his meds, I have no other choice but to put on my helicopter mom hat.
In fact, I have never liked this hat.
Did I mention I really, really despise hats?
Hey, wait just a minute ... I should NOT have to be wearing this hat AT ALL!
But I wear it because right now this very minute, I must hover to keep him safe--only because the system has failed him and our family miserably. I don’t really want to wear this hat.
For so many parents of children with serious mental illness, this last week of August is a nail-biter as we wait to see whether Congress will do the right thing and pass Representative Tim Murphy’s proposed “Helping Families in Mental Health Crisis” Act. Here are some of the critical reforms that Representative Murphy’s bill provides:
Revising HIPAA Laws and Medicaid Reimbursements
Privacy laws in healthcare prevent parents from getting crucial information that they need to help their adult children in crisis. And the Medicaid IMD exclusion has directly caused an acute shortage of inpatient psychiatric beds for patients with mental illness who need treatment. Today, there are only 40,000 psychiatric beds available in the nation. If my son required longer term care, he would have to go hours away from my home. This is true for many families.
Providing Alternatives to Institutionalization through AOT
Assisted Outpatient Treatment (AOT)  is a proven alternative to keep people stable and productive in their communities. The opposition to Rep. Murphy’s bill has labeled this provision as “forced treatment.” It is not. AOT laws are already on the books in 44 of 50 states and “require mental health authorities to provide resources and oversight necessary so that high-risk individuals with serious mental illness may experience fewer incidents and can live in a less restrictive alternative to incarceration or involuntary hospitalization” 
A few weeks ago, I spoke with a young woman who opposed my views on AOT. She had been in a psychiatric hospital for more than a month and felt that the care she received was “horrible.”
“Have you been to jail?” I asked. She admitted that like many people who have mental illness, she had.
“Which did you prefer?” I asked.
“The hospital,” she responded without even hesitating. But she made a good point: our current in-patient hospitalization practices, while not as horrible as the psychiatric institutions of yore, could still use some serious makeovers in terms of both physical facilities and therapeutic practices. One of my friends with bipolar disorder has envisioned a therapeutic hospital that would feel more like a spa, where people could stabilize in safety while also continuing to work remotely or go to school—to do the things that give everyone’s life meaning and purpose. Similarly, AOT aims to keep people in their communities, not force them into institutions.
Restructuring SAMHSA funding
I have already expressed my frustrations with SAMHSA and how they fail to provide assistance to the most critically ill patients and their families.  Representative Murphy’s bill restores accountability by tying funding to evidence-based practices that actually help people with mental illness to manage their conditions and live productive, healthy lives. Far from discouraging innovation, as the opposition warns, this provision will actually encourage organizations to build program evaluation into their practice, providing data about what works—and what doesn’t—so that we can focus on helping people to make their lives better.
Let me give you an example from my own state. In an effort to save money, Idaho contracted with Optum to manage its Medicaid mental health care. Optum looked at one service, psychosocial rehabilitation, or PSR, and decided that it was overused and often not medically necessary, especially in children
PSR had historically been used as a “catch-all” for children with serious emotional disturbances or behavioral issues. The result of this abrupt PSR denial was that families suddenly found themselves without a service they felt was necessary to their children’s health.
What did the evidence say? Because there were never any requirements to track outcomes, the state merely logged hours and made reimbursements. It turns out that no one really knows what PSR is in Idaho, let alone whether it is effective. Every agency essentially acted independently, developing their own model in the absence of standards for care. Two researchers did find significant clinical improvements for kids on PSR. But they only looked at one of many models. 
Tying outcomes to funding would have provided much-needed data on whether PSR works in children. If the data had been positive, we might have an additional valuable tool to help children function better in the community, a tool we could share with other communities to improve everyone’s care.
Representative Murphy’s bill was forged after the tragedy of Newtown, which also sparked my own desire to advocate for my son. As I researched the myriad problems that plague our system for my forthcoming book, I repeatedly found the same tragic story: poverty, mental illness, and prison. America’s incarceration rates when compared to other so-called first world countries are quite literally off the charts, with more than 2.4 million people in prison. 
If ever there was a truly bipartisan cause, it’s mental health. Fixing our broken mental healthcare system promises to ameliorate so many of the other social ills that harm children, families, and communities. A new advocacy organization, Treatment Before Tragedy, is sharing stories of families like mine, whose children are suffering.  If you are a family member of someone who has mental illness, I encourage you to join this organization and to share your story on Twitter, using the hashtag #Tb4T.
And if you haven’t, please call your representative personally and ask him or her to cosponsor Representative Murphy’s bill. Right now, if your child is in mental health crisis, your only options are to call the police or to go to the emergency room. We can and must do better for our children and families. No family of a child with mental illness deserves that dreaded knock in the middle of the night.


Flan said...

This is a great post Liza! I must add that for the minority of people who do not respond quickly to treatment, if they are lucky enough to get it, and/or are very treatment resistant, and/or have severe cognitive disabilities from their mental illness, as in my brother Paul's case, there is a need for institutional care. This accounts for roughly 25% of people with the most severe forms of serious brain disorders, especially schizophrenia.

This means the Medicaid Institutes for Mental Diseases (IMD) Exclusion must be fully repealed. Both the Affordable Care Act and the Helping Families In Mental Health Crisis Act (HR3717) have started the process to end the discrimination against people on Medicaid who need long term in-patient acute care for stabilization, and long term congregate housing that offers intense supports, including medication management, food services, occupational therapy and other services. Neither fully repeal the IMD Exclusion.

The ACA, in its Emergency Hospitalization for Stabilization demonstration project, which is being carried out in 11 states and DC, only allows federal Medicaid funds to be spent at private hospitals, continuing the burden on the state hospitals that remain open. HR3717 provides funding to both private and public hospitals but limits acute treatment to 30 days. We know that some people take longer to stabilize than others so this 30 day limit seems arbitrary at best, or concedes to the anti psychiatry groups at worst, who are putting forth arguments that the repeal of the IMD Exclusion would lead to people to be rounded up and warehoused again. In reality we know that is not going to happen.

Neither the ACA nor HR3717 address the need to allow Medicaid to cover longer stays in residential drug rehabitation facilities. When so many people with a serious mental illness are self medicating with street drugs and becoming addicted, leaving out the need to cover residential drug facilities not only creates a revolving door to the 28 day programs, it also leads to incarceration and death.

People with severe brain disorders need the same treatments available to people with diseases in other organs of their bodies. This includes in-patient treatment when medically necessary, for the appropriate length of time to stabize the patient, and institutional care for those who, unfortunately, do not recover to any significant degree or who have serious cognitive impairments and are unable to handle or benefit from living in the least restrictive environment, as was my brother's case.

I support HR3717 because it does bring us closer to a full repeal of the Medicaid IMD Exclusion. I hope the 30 day requirement can be lifted and will continue to advocate for its full repeal.

Thanks again for a wonderful post.

Ilene Flannery Wells
Paul's Legacy Project

kwiist said...
This comment has been removed by the author.
Unknown said...

I just finished watching Mind of a Rampage Killer. My jaw hit the ground when you and your son were explaining his condition. My son who is now 18 has been suffering from blind rages as well. The local dentist will not see him anymore. The high school had to relocate him to a small room behind a house his sophomore year in high school. He was a safety hazard when in regular classes. He has ripped things from teachers hands, punched lockers, thrown trash cans across the commons. He was on medication used for ADHD but found that at puberty those kinds of meds made his anger so much worse. I struggled for years to get him help. I live so far in the middle of no where that it almost became impossible. It is still a struggle everyday to control the bursts of anger but he tries with all his heart to keep it in check.

Thank you for taking a stand and telling your story. No one understands what I have gone through on a daily basis. I often hear all about what I need to do or how I have done wrong in raising him. It is nice to know that I am not alone.

Unknown said...
This comment has been removed by the author.
Unknown said...
This comment has been removed by the author.