By Mary Giliberti, NAMI Executive Director
As Congress goes into its August recess, it has yet to act on legislative proposals to improve mental health care in the U.S. Nearly two years after the Sandy Hook elementary school tragedy in Newtown, Conn. focused attention on the nation’s broken mental health system, there has been much discussion in Congress about how to improve mental health care but very little resolution.
Two significant bills have been introduced in the U.S. House of Representatives, one by Representative Tim Murphy (R - Pa.), the other by Congressman Ron Barber (D. - Ariz.). Both bills contain many excellent provisions that, if enacted, would represent major improvements in the mental health system.
For example, both bills include urgent resources for suicide prevention. Suicide is currently the second leading cause of death for young adults in the U.S. Having lost someone close to me to suicide, I know the consequences of inaction in this area and the devastating impact of suicide on families and those close to the person.
Both bills also contain multiple provisions to put more resources into jail diversion and community reentry for individuals living with mental illness involved with the criminal justice system. The criminalization of people living with mental illness is a profound injustice and violation of human rights. Recently, I visited the Cook County jail in Chicago and saw firsthand why this correctional institution has been characterized as the largest de-facto mental health treatment facility in the U.S. The numbers of people with mental illness housed there was sickening.
The two bills also contain provisions to protect access to psychiatric medications in Medicaid and Medicare. Both would eliminate the exclusion of mental health providers from existing federal resources to expand and improve health information technology and electronic health information systems. Both bills provide resources for better integration of mental and physical health care. Finally, both would permit same day billing in Medicaid for physical and mental health services—something which is currently not permitted and imposes terrible burdens on people who have to make separate appointments and arrange transportation multiple times.
Representative Murphy has been tireless in his efforts over the past two years to elevate attention to issues and promote improvements in access and quality of mental health services. Prior to his hearings, there was little discussion on Capitol Hill of the poor outcomes experienced by far too many people living with mental illness. NAMI is grateful to him for his ongoing efforts. His dedication to improving mental health treatment and services cannot be questioned.
Representative Murphy’s bill is not without controversy and there have been differences of opinion within the mental health community over some provisions. These include provisions pertaining to the U.S. Substance Abuse and Mental Health Services Administration (SAMHSA), involuntary inpatient and outpatient commitment, the federal health privacy law (HIPAA), the Medicaid prohibition on paying for certain inpatient psychiatric treatment, and the federally funded Protection and Advocacy for Individuals with Mental Illness (PAIMI) program.
People on both sides of the issues have criticized NAMI for either supporting Representative Murphy’s bill or not being supportive enough. Although criticism can be constructive, some has been based on incomplete information. Some have failed to appreciate the harm that can come from infighting in any community and the need to find common ground and real solutions that can be enacted into law.
In a previous job, I served as disability counsel to the U.S. Senate’s Health, Education and Pensions (HELP) Committee. This experience more than any other shapes how I look at comprehensive mental health legislation. During my time on the Hill, I worked on several major bills and found that compromise led to bills that could clear both parties and both houses and usually led to policies that were successfully implemented. In the polarized political climate that currently prevails in Congress, sharp disagreements about specific provisions in bills only guarantee that nothing will pass.
Mental illness does not discriminate. It affects Republicans and Democrats—and their families—alike. In the weeks remaining before Congress adjourns, we need to drive that message home.
NAMI has been working hard behind the scenes to build consensus on some of the issues that are controversial. For example, we have recommended an alternative approach on HIPAA that would instill guidance in federal law clarifying that communication with families and caregivers is preferable in treatment and when it is permitted or not permitted.
NAMI has long advocated repealing completely the federal Institutions for Mental Diseases (IMD) exclusion that prohibits federal Medicaid dollars from paying for inpatient treatment in certain types of psychiatric hospitals and facilities. Nonetheless, we support a narrower provision in the Murphy bill that would allow federal Medicaid dollars to be used for short-term acute inpatient psychiatric treatment. This represents reasonable compromise. Unfortunately, the IMD exclusion is not addressed in Representative Barber’s bill. NAMI continues to urge individuals and families affected by mental illness to call on Members of Congress to include it in comprehensive mental health legislation.
But repealing the IMD exclusion is not enough. A major journal article this month noted abysmal rates of follow-up care for people after they leave hospitals. The National Association of State Mental Health Program Directors (NASMHPD) recently issued a report which noted that inpatient beds must be part of community-based systems of care, not apart from them.
We must demand better coordination of care for people reentering communities and better long term outcomes in treatment. Data on quality and outcomes of services in the mental health field is sorely lacking. Therefore, NAMI also strongly supports Representative Murphy’s call to create a national mental health policy laboratory to track outcomes.
Court-ordered Assisted Outpatient Treatment (AOT) is sometimes called the “third rail” in the mental health community for major reform. There are sharply polarized opinions on either side. They all should be respected in a dialogue to seek common ground. NAMI policy supports AOT as a last resort. However, we urge more focus on earlier options (“first resorts”) because they can reduce crises before they occur and ensure that AOT is used for the right reasons—not because people cannot get help earlier on a voluntary basis.
NAMI also strongly supports first-episode psychosis programs that provide early intervention when young people first show symptoms of psychosis, offering treatment and coping strategies, support to families, and education and employment support services. Comprehensive mental health legislation should support such programs including mechanisms for paying for such treatment through Medicaid and other funding sources.
Some people believe NAMI has not advocated for the elimination of SAMHSA because we receive money from the agency. In full disclosure, we receive 3 percent of our funding from SAMHSA. NAMI is funded by SAMHSA to run the STAR Center, a technical assistance project that among other things, promotes outreach to diverse cultural and age groups of people with mental illness—as well as individuals and families involved in the criminal justice system.
Even if NAMI’s funding from SAMHSA were larger, concerns that this compromises our advocacy are unwarranted. We will continue to urge SAMHSA and other federal agencies administering programs relevant to mental illness to focus resources on the needs of those whose lives have been significantly affected by mental illness.
It is easy to criticize legislative proposals. It is harder to forge compromise. NAMI wants meaningful solutions to the mental health crisis in America. We need assertive action by Congress now.
The purity of rigid positions means little to a person sitting in a jail cell today who was in need of crisis care the night before, or to the family of this person. They mean little to a person living with both schizophrenia and diabetes who cannot get integrated treatment—and whose lifespan is likely to be 25 years shorter than the general population. It is time to join together to fight against the abysmal mental health system, not each other. If we fail to do so, we will have only ourselves to blame if Congress does nothing.
On Thursday, September 4, attendees of the NAMI Convention and advocates throughout the country have the opportunity to have their voices heard on the importance of Congressional action through a National Day of Action. The message will be clear and simple—Congress must #Act4MentalHealth and pass comprehensive legislation to improve mental health care this year! Stay alert for more information about the National Day of Action in the coming weeks.
Visit NAMI’s website to read more about the two bills and NAMI’s position.