Thursday, January 31, 2013

Not Even Discussed In Private Rooms: Childhood Sexual Abuse and Abuse Survivors

There is a health crisis in this country (as well as worldwide) that adversely affects one-fifth of the US population. Consequences of this crisis manifest in a wide variety of serious disease conditions. Physically it can exhibit as cancer and/or as any number of equally severe mental illnesses. Socially the disease is, in a word, criminality. Costs are estimated at over $100 billion per year, or similar to the annual expense of the war in Afghanistan. Investment in its prevention is estimated at a nickel on every $100 in research, compared to $2 for cancer. (See Note 1)

Despite considerable attention drawn to this issue this past year — the Surgeon General termed it an “epidemic” well over a decade ago — the crisis was not discussed during the presidential campaign. It remains largely ignored by the Congress (though just prior to adjourning sine die an innocuous bill to evaluate child welfare systems was passed), was unaddressed by the Affordable Care Act, and has been ignored as well to date by the Center for Medicare and Medicaid Innovation. “The leading journal of health policy thought and research,” Health Affairs, has never published on the topic.

The health crisis is child sexual abuse, which adversely affects the health status of 50 million survivors.

Beyond the Catholic Church’s continuing inability to address, or indifference to, abuse by thousands of priests over the past fifty years, this year we learned about the cover-up at Penn State. Added to the reality of Jerry Sandusky’s conviction on 45 counts of abuse between 1994 and 2009 is the worry that he may have been abusing boys since the 1970s. We learned of the multi-decade cover-up of abuse at the New York City’s private Horace Mann School. We also learned the Boy Scouts of America secretly held “perversion files” for nearly a century that record sexual abuse accusations against thousands of scout leaders. In October it was revealed a long-time BBC program host, Jerry Savile (now deceased), had engaged in widespread pedophilia involving an estimated 500 children over six decades including children in 14 hospitals and a children’s hospice.

What Can Be Done?

Improving reporting and data collection. Despite all this and more, the issue is not discussed in Washington. Unlike Australia’s recent decision to create a royal commission to examine childhood sexual abuse, there is no national dialogue in the United States. One way to start a dialogue would be to realize there is no accurate reporting and data collection concerning child abuse. Child Protective Services investigate a substantial number of maltreated children, but far from all, because of interagency disputes over definitions and jurisdiction. Reporting responsibility, and to whom, is also confused if and when professionals in community institutions — for example day care centers and schools — are involved.

Added to this are inadequacies in data collection. The Uniform Crime Reports does not provide sufficient details beyond arrests; the National Crime Victimization Survey does not measure crime against children younger than age 12. As for the National Incident Based Reporting System, not all law enforcement agencies and/or states participate.

 Beyond all this, keep in mind an estimated 90 percent of sexual abuses are never reported.

Strengthening research. Equally underwhelming is research to treat adult survivors of childhood abuse. Anyone familiar with the 1990s ACE (Adverse Childhood Experiences) study is well aware of the long-term health impact of trauma over a person’s lifespan. Because of the prevalence of abuse, there have been calls over the years for the creation of a dedicated NIH Institute named, for example, the Institute of Child Abuse and Interpersonal Violence. Notwithstanding, there is little systematic research in the dissociative disorders. Dissociative Identity Disorder (DID) or Dissociative Disorder Not Otherwise Specified (DDNOS) are some of the most severe mental disorders survivors suffer. These diagnoses are associated with high levels of impairment, high rates of treatment utilization and costs, and can affect as many as 20 percent of psychiatric hospital patients. (See Note 2) That these patients are understudied is explained in part by exclusion criteria used in PTSD treatment studies.

Studies are also lacking or undermined because the diagnosis and treatment of DID have been under attack over the past twenty years by the highly controversial False Memory Syndrome Foundation. FMSF has been successful despite the fact there is no peer-reviewed clinical literature concerning “false memory syndrome” and that the “syndrome” is not recognized by the American Psychiatric Association in the DSM-IV. Multiple Personality Disorder was recognized in the DMS-III in 1980 and renamed DID in the 1994 DMS-IV.

Bolstering legal protections for survivors. Thirdly, due in part to the fact psychiatric disability is the most stigmatizing of all disabilities (one poll by the National Organization on Disability showed only 19 percent of Americans are comfortable with people with mental illness), many adult survivors find it difficult if not possible to secure health benefits if and when their mental health disorder becomes known to their employer. Studies show workers with mental health conditions are half as likely to receive accommodations as those with other disabilities, even though accommodations for psychiatric disorders cost very little or nothing in contrast to technological or architectural changes required for other disabilities.

The 1990 Americans with Disabilities Act required employers to make reasonable accommodations for disabled employees. Subsequent to the law’s passage, the intent of the legislation became narrowed or undermined through several court decisions. The Congress in 2008 again stepped in and enacted the ADA Amendments Act that reinstated or reaffirmed the broad scope of disability protections available under the ADA. Even with the renewed mandate, employees with a mental health diagnosis have a very difficult time being afforded reasonable accommodation, or worse, as numerous EEOC case filings show, lose their job (and of course their health benefits) when their diagnosis becomes known to their employer.

Where there is a dialogue or an effort to address the crisis is in the realm of window laws for survivors. In most states, abuse victims have a limited period of time, a statute of limitations, to file a civil claim against their predator. For example, in New York a victim would have five years after turning 18 to file for a first degree offense. Other states have recently liberalized these civil laws. For example, in Pennsylvania the age limit for filing child sex abuse cases is 30 for civil cases. Other states, California then Delaware and recently Hawaii, have also created windows of time for victims who had timed out from filing civil claims.

Some states like New Jersey are considering completely eliminating the time period. In New York, despite a fairly well-publicized effort to extend the statute of limitations, the proposal failed this past year. New York’s failure and the failures in other states have been due largely to efforts by the Catholic Church, as well as ultra-Orthodox Jewish leaders. Though the church did support extending the statute to age 28 in New York, bishops claimed generally the legislation “targeted” the church and would undermine its ability to provide social services. Window legislation has also been proposed but defeated in Colorado, Illinois, Maryland, Ohio, and Washington, DC. (See Note 3)

Child abuse and its effects on survivors remains our largest public health crisis.

 Some say it may be the country’s last great civil rights issue. The ACE study mentioned above (and still ongoing) found survivors of childhood abuse suffer a long list of illnesses and disabilities. They include excessive rates of alcoholism, cancer, chronic obstructive pulmonary disease, depression and other psychiatric disorders, heart and liver disease, illicit drug use, obesity, poor school/work performance, poverty, risky sex and suicide. However, possibly worst of all is the inter-generational transmission of childhood abuse. That there is no national dialogue about any of this is unconscionable. We ignore the crisis at our collective peril.


Note 1. Regarding the prevalence of sexual abuse see the CDC page. For costs see, for example, the work done by the Edna McConnell Clark Foundation. See “Mental Health, A Report of the Surgeon General.” (1999) For investment in research see for example F. W. Putnam, in The Cost of Child Maltreatment: Who Pays? K. Franey, et al., eds. (Family Violence and Sexual Assault Institute, San Diego) pgs. 185-198.

Note 2. B. L. Brand, et al. “A Naturalistic Study of Dissociative Identity Disorder and Dissociative Disorder Not Specified Patients Treated by Community Clinicians,” Psychological Trauma: Theory, Research, Policy and Practice,” (2012): 153-171.

Note 3. “The Children Deserve Justice“, editorial, The New York Times, June 16, 2012 and Laurie Goodstein and Erik Eckholm, “Church Battles Efforts to Ease Sex Abuse Suits,” The New York Times, June 14, 2012.