I invited Kimberly Blaker to write today’s blog. Kimberly is an author and freelance writer, and the mother of a young adult son with SMI, schizoaffective disorder.
It’s been more than fifty years since President John F. Kennedy signed into law the Community Mental Health Act of 1963. That act strived to revitalize mental health care for people with serious mental illness (SMI). It endeavored to allow people with SMI to live among society by stabilizing them with new evidence-based treatments and medications, and to rid society of the inhumane conditions that characterized institutions. It was admirable indeed.
Such a monumental task requires strategic planning. Sadly this did not happen.
Deinstitutionalization occurred en masse for decades without a comprehensive plan. The result has been a mish-mash of underfunded, disorganized, and ineffective state and community programs throughout our country.
Now, after decades without meaningful reform, Congress is paying attention. Several bills that can improve care for people with mental illness have been introduced.
The bipartisan Helping Families in Mental Health Crisis Act, HR2646, introduced in June by Rep. Tim Murphy and Rep. Eddie Bernice Johnson, is the most substantive piece of legislation. It proposes to resolve many problems within our mental health care system and will improve treatment of people with SMI. These changes will significantly reduce homelessness, incarcerations, and death among people with SMI.
HR2646 would reform HIPAA so families and caregivers have access to necessary protected health information to care for their loved ones; reform SAMHSA to ensure oversight so funds are used to treat and prioritize those with the most serious brain diseases; provide funding for assisted outpatient treatment (AOT); increase the number of psychiatric beds for crisis treatment; emphasize evidence-based treatments; and more.
Another bipartisan bill, the Mental Health Reform Act of 2015, S.1945, was introduced by Sen. Bill Cassidy and Sen. Christopher Murphy. Although S.1945 has many of the provisions of HR2646, it lacks much of the substance of HR2646.
Not surprisingly, these bills are controversial. Anti-psychiatry and anti-pharmaceutical groups oppose the bills as do some organizations whose purpose is treating people with serious mental illness. Some oppose such crucial measures of the bills, including assisted outpatient treatment (AOT). However, evidence has shown this to be effective treatment for the small percentage of people with SMI who have psychosis and anosognosia. Opponents of AOT cite civil rights law violations, yet how can we allow seriously ill people to go untreated, compromising their safety and well being as well as that of society?
Nonetheless, support for these bills is mounting. HR2646 has been supported by National Alliance on Mental Illness, American Psychiatric Association, American College of Emergency Physicians, American Psychological Association, Treatment Advocacy Center, Mental Illness Policy Org, and many other organizations.
Likewise, S1945 has been supported by many of these same organizations among others.
This legislation is crucial to my son's recovery and that of millions of others with SMI. He was first diagnosed with schizoaffective disorder three years ago at the age of 19. During this time his condition has continued to deteriorate. He has been hospitalized eight times, always released within days still in psychosis because of the shortage of beds. He suffers from anosognosia and therefore refuses treatment. AOT is the only thing that keeps him on his medication. But it is used inconsistently where he lives and for very short-term. My ability to communicate with his doctor has become increasingly impossible as a result of HIPAA. These combined factors have left him in a state of psychosis that has not lifted in the past 18 months. The horrifying nature of his hallucinations put him and those around him at risk. I am in constant worry he will be one more tragic statistic.
I invite people to join me in a campaign that I’m spearheading to ask legislators to support HR2646 and S1945. For more information, please contact me at firstname.lastname@example.org.