On July 9, Rep. Tim Murphy (R-PA) appealed to congress, “Let’s no longer turn a blind eye and instead help those who need it the most.” Murphy pointed to the 200 deaths per day by suicide and drug overdose, and the uncountable “slow motion deaths” of millions with serious mental illness (SMI). He asked congressional members, again, to co-sponsor the bipartisan Helping Families in Mental Health Crisis Act of 2015, HR-2646.
The two broader problems with treatment for the seriously mentally ill (SMI) are laws and funding.
Laws created to protect the rights of SMI individuals didn’t take into account that those with SMI, particularly schizophrenia, are often unable to recognize their illness and therefore unwilling to seek treatment, resulting in inability to care for themselves. This is seen in that 35% of the population receiving federal disability insurance benefits is mentally ill.
Moreover funding has dwindled severely. Hospitals shut down while insufficient public funding has impeded development of adequate out-patient programs.
The continuation of these problems stems in part from lack of public understanding of SMI.
There are 3.5 million people in the US with schizophrenia alone, a fate often worse than death. My son, Caleb, was diagnosed three years ago, at the age of 19. His adult life has been spent inside a living hell–literally. The early stage was marked primarily by delusions and paranoia: there was a government conspiracy against him, Lil Wayne and Drake were writing derogatory songs about him, and pimps were trying to kill him. This was only the beginning of a downward spiral.
The first year of treatment showed only mild success. Antipsychotics are relatively fast acting, and if monitored, can be quickly adjusted or changed. But with a shortage of psychiatric beds, he was in and out of the hospital within days, still in psychosis. Further hindering recovery, he was allowed only one 30-minute psychiatric appointment per month.
It should be noted, each episode and the longer in psychosis, the more damage done to the brain resulting in increasing severity and reducing the likelihood of recovery.
This has proven true for Caleb. A year into his illness, he received a message to cut off his ear or toe or to break a leg. In the middle of the night, I awakened to his blood curdling screams. He had jumped 15 feet from a tree fracturing his back. Just prior to this feat, he attempted, unsuccessfully, to silence the commands. He branded his arm with a fork, a scar that remains today. He was admitted for psychiatric care, but released within 7 days with little improvement.
Over the next two years, he is hospitalized with increasing frequency, always released within days. He is paranoid and live in constant fear with the belief his family and friends want to kill him. He hallucinates I say such horrific things to him as, “I’m going to chop off your head”, or “I’ll bury you alive.” He has spent nights sitting on his bed prepared to bolt if I break down the door to kill him.
Six months ago, the television told him he is Jeffrey Dahmer, and the President told him to kill me. My son isn’t violent. But statistics speak for themselves, and psychosis often leads to violent and tragic acts. It was a several day battle to get him hospitalized, and he was released in 3 days in the same condition.
For a few months, his psychosis finally improved. But this rarely lasts. With his paranoia that doctors, pharmaceutical companies, and his family are trying to poison him, he often refuses medication. Recently, Caleb took another downturn. He cannot not comprehend real conversations because the hallucinatory voices are so overpowering. He carries on arguments with these voices, tells the news anchors on TV to shut up because they are talking about him, and is angry with the Pope for something the Pope is doing to him. He insists he is traversing. As a result, there are now two of him, or maybe three, and he doesn’t know which is the real him. He becomes confused and doesn’t know where he is and pleads with me to get him home. I try to reassure him, “you are the real Caleb, and you are safe at home.” It is heartbreaking.
But we aren’t alone. This plays out for millions of SMI people and their families day-after-day, week-after-week, and year-after-year as loved ones spiral further into the abyss.
HR-2646 is far from a complete overhaul of our poor mental health system. But it makes several meaningful improvements. Family access to information about the diagnosis and prescribed treatments for their mentally ill adult loved ones has hindered families’ ability to protect and care for the sick member. This bill will clarify HIPAA so caregivers have access to necessary information.
Also crucial, the bill will require states to authorize assisted outpatient treatment (AOT) for the state to receive Community Mental Health Service Block Grant funds, and expansion of civil commitment criteria.
Other needs are also addressed including the shortage of psychiatric beds, greater use of criminal diversion programs, greater emphasis on evidence-based care, and alternatives to institutionalization.
This bill should not be shelved or watered down. Certain groups are making concerted efforts to remove crucial components. These include anti-psychiatry groups, and organizations focused on general mental wellness rather than treatment for the seriously mentally ill who are the most under served and for whom this legislation was intended.
Kimberly Blaker is an author and freelance writer and the mother of a young adult son with schizoaffective disorder (schizophrenia and bipolar).