SAMHSA at 20: From Hopelessness to Recovery and Prevention

BEHAVIORAL HEALTHCARE

September 26, 2012
by Ron Manderscheid

Happy 20th birthday to SAMHSA! We wish you scores more years of continued success!

On October 1, SAMHSA will mark its 20th birthday. We wish to commemorate that occasion and to celebrate the progress from hopelessness to recovery and prevention that SAMHSA has helped to foster between 1992 and 2012.

Over the past 20 years, the behavioral health field has seen dramatic change. When SAMHSA was established in 1992, the field was still struggling to develop community-based services, foster the peer/consumer movement, and prove that prevention, treatment, and recovery were possible. Today, consumer self-determination and shared decision-making inform community service systems. The concept of recovery empowers consumers. And health promotion, disease prevention, and early intervention have become essential elements of our behavioral health system.

The experience of recovery—along with the fostering of personal resilience through health promotion and disease prevention—are the two most important outcomes to emerge since SAMHSA’s founding and, actually, since the creation of the behavioral health field itself. Just 20 years ago, recovery was not part of behavioral health’s lexicon. Even within the behavioral health field, many didn’t believe that recovery was actually possible.

The idea of recovery grew out of the self-help movement, including Alcoholics Anonymous, Recovery Incorporated, Narcotics Anonymous, On Our Own, and the family movement including Al-Anon. Peers and consumers brought the concept to the substance use and mental health fields, demonstrating that their knowledge and insights could not only improve their own care but help shape an entire field.

Promoting Recovery. Since then, recovery has become a ubiquitous goal within behavioral health and a national call to action. SAMHSA adopted the concept and has played a vital role in promoting it. For example, SAMHSA recently has formulated a working definition that describes recovery from behavioral health conditions. SAMHSA also articulated several important related principles: recovery emerges from hope; occurs via many pathways; involves individual, family, and community strengths and responsibility; is person-driven, holistic, and culturally-based and influenced; is based on respect; and is supported by peers and allies through relationships and social networks and by addressing trauma.

Promoting Resilience. SAMHSA also recognized early how important it is to pay much more attention to promoting heath and preventing disease. The result has been increased emphasis on trauma’s critical role in mental illness and substance use, and the importance of early intervention efforts, such as Screening, Brief Intervention, and Referral to Treatment (SBIRT). The need to contain health care costs points squarely in this direction. SAMHSA has provided essential leadership at the federal, state, and community levels through major prevention initiatives. This work will influence how the Affordable Care Act approaches prevention of chronic disease.

Reducing Disparities. SAMHSA also has made major strides in reducing the disparities in health status and care that people with behavioral health conditions often experience. One direct consequence is the Wellstone-Domenici Mental Health Parity and Addiction Equity Act of 2008. That landmark legislation reduces treatment disparities between behavioral health and medical care in large, private insurance plans. The ACA has extended those protections to people newly insured through Medicaid and state health insurance exchanges. Universal coverage will promote equity in health status and treatment for those with behavioral health conditions. SAMHSA also has made major strides in addressing another type of disparity: the lack of culturally competent behavioral health care.

Looking to the Future. Much still remains for SAMHSA to do. The ACA offers our field unprecedented opportunities. Thanks to the ACA, for example, adults earning up to 138 percent of the federal poverty level will gain Medicaid coverage. State health insurance exchanges will cover uninsured adults with incomes above that level. As a result of these two changes, 32 million adults—about 12.4 million with pre-existing mental or substance use conditions—will enjoy insurance coverage.

To fulfill these and other opportunities, SAMHSA and the behavioral health field must engage the broader health field, as well as communities themselves, to support good behavioral health for all. They also must promote community- and population-based prevention, treatment, and recovery services, and support individuals as they seek their own paths to resilience and recovery.

To commemorate SAMHSA’s 20th birthday, I and Paul Samuels of the Legal Action Center prepared a view from the field. Our report offers a look at the two decades of SAMHSA’s past successes and the development of the behavioral health community during this period, as well as key directions and steps needed for the future. This report will be available at the SAMHSA anniversary event on October 4.

Our hats are off to SAMHSA and its entire current and past staff for all the remarkable things you have accomplished during your first 20 years. We wish you many, many more years of continued success in your endeavors to improve behavioral healthcare.

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Ron Manderscheid, PhD
Exec Dir, NACBHDD
rmanderscheid@nacbhd.org
V: 202-942-4296; M: 202-553-1827
The Voice of Local Authorities in the Nation's Capital!

Parity – Patriots Continue the Fight

 On September 18^th, in Los Angeles, California, The Parity Implementation Coalition held its 5th “Parity Field Hearing” of 2012 at the Chicago School of Professional Psychology. The purpose behind the 2012 Parity Field Hearings is to highlight the persistent insurance and treatment inequities faced by patients and providers because we still lack final rules and regulations for the Mental Health Parity and Addiction Equity Act (MHPAEA). The 2012 Hearings are modeled after the field hearings in 2007, which were successful in pushing President Bush to sign MHPAEA into law.

The President of the Chicago School of Professional Psychology, Dr. Michele Nealon-Woods, opened the Los Angeles event, introducing former Members of Congress Patrick J. Kennedy and Jim Ramstad, known as the “Parity Champions," who educated as well as rallied the crowd with their opening remarks. Congressmen Kennedy and Ramstad proclaimed with inspiring passion that there is a “political urgency” to pass the final rules and regulations so that those affected by mental illness can finally access treatment on par with those suffering a physical illness. Of particular concern for Kennedy is how access to mental health treatment for our “nation’s heroes," our returning Veterans and active duty members of the military, is grossly inadequate and costing lives. He quoted alarming statistics from the September 17, 2012 IOM consensus report, “Substance Use Disorders in the U.S. Armed Forces," and shared that over 50% of returning Iraq and Afghanistan veterans will try to access care for what are being called, “invisible wounds," such as depression, PTSD, and eating disorders, only to be turned away because of the lack of access to treatment. Congressman Ramstad called the practices that insurance companies use to circumvent the law an “outrage and travesty” and noted that “too many people don’t realize these are life and death issues." He also admonished the administration by sharing that his research shows that no other bill has ever needed this long for the administration to adopt final rules and regulations. Both men called on the administration and the Secretaries of Labor, Treasury and Health and Human Services to take exigent action to address the lack of final rules and regulations, which would thus provide the long awaited oversight necessary to hold accountable the insurance companies who have been circumventing the MHPAEA.

The night then moved on to three panels of speakers. The first panel included a dad and son, Kevin and Connor Kinnon. Kevin told the story of how his son Connor suffered with severe depression that led to suicide attempts, in part because Connor was never given adequate treatment despite the fact that his dad had high quality insurance. NAMI President Keris Myrick shared her story of hope and recovery, recovery that was possible because she had access to the treatment she needed for her schizoaffective disorder and OCD. Navy Veteran Vikash Sharma shared his heart-wrenching battle to receive proper treatment for his PTSD that had gone undiagnosed for four years post-discharge from the Navy. The second panel included the former Director of the California Department of Managed Care, the Chief Psychologist at the U.S. Veterans Initiative, a Research Psychologist from UCLA’s Integrated Substance Abuse, and Lisa Kantor, a Los Angeles lawyer and partner in Kantor & Kantor LLP who represents people denied health benefits for treatment of both physical and mental illnesses, including eating disorders. The third panel of speakers included the President and CEO of the Betty Ford Center, the President-elect of the California Society of Addiction Medicine, the Director of Government Regulations for the Clinical Social Work Association, and the President-elect of the California Academy of Child and Adolescent Psychiatry.

Many people are familiar with California attorney, Lisa Kantor, EDC Board Member, who spoke on Panel Two. Lisa Kantor’s dedication to those affected by eating disorders is widely known and well-respected for many reasons, but perhaps most notably she is known because of her case involving Jeanene Harlick. Ms. Harlick’s case became the basis upon which the 9^th U.S. Circuit Court of Appeals based its ruling that health plans must provide coverage for all “medically necessary treatment” for eating disorders “under the same financial terms as those applied to physical illnesses.” During her speech at the field hearing, Ms. Kantor shared stories of just how egregiously insurance companies violate the law when doling out access to care for those suffering with eating disorders. She told of a young woman whose insurance company denied her continued treatment because they felt that since she had reduced her laxative use down to 50 per day (mind you this decrease was only accomplished because she was in 24 hour treatment and closely monitored), she no longer needed treatment. And she shared the story of a young woman who died after her stomach ruptured as a result of bulimia. Unfortunately that same young woman had been denied treatment in the years prior to her death because her insurance company didn’t treat offer coverage for her eating disorder on par with the coverage they offered for physical illnesses.

Ms. Kantor concluded her speech with an essential statement, a statement we hope Secretaries Geithner, Solis and Sebelius will heed and act upon with urgency: “These kinds of disparities happen to people with eating disorders every day. These kinds of disparities are killing people.  And these disparities are why we urgently need the rules and regulations in place and we need the Final Rules and Regulations to specifically include eating disorders under Parity. “

The next Parity Field Hearing takes place in Delray Beach, Florida on October 9, 2012 and is sponsored in part by EDC Member Organizations, The Alliance for Eating Disorders and Oliver Pyatt Treatment Center. At the Florida hearing, Congressmen Kennedy and Ramstad will once again rally consumers, professionals and all those concerned about persons suffering from mental illness, urging the administration to put in place the long overdue and life-saving final rules and regulations for the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act. For more information about the Hearings or to share your story about inadequate parity, visit: www.parityispersonal.org  The Eating Disorders Coalition will continue to be highly active in the Parity Implementation's bold and courageous efforts to ensure that final rules and regulations are enacted as soon as possible. Please contact us to get involved: www.eatingdisorderscoalition.org

CALLING ALL EDC ADVOCATES IN THE LOS ANGELES AREA! ATTEND THE FIELD HEARING SEPTEMBER 18th

The EDC continues to work closely with the Parity Implementation Coalition to ensure that the 2012 Parity Field Hearings include stories about those with eating disorders who continue to be denied care, despite the passage of the Mental Health Parity and Addiction Equity Act (MHPAEA). We have been a strong and consistent voice at the 2012 Field Hearings and we are thrilled that Lisa Kantor, EDC board member and attorney who takes on insurers who refuse life saving and necessary care, is speaking at the Los Angeles, CA, Parity Field Hearing on September 18th.  We hope you are able to attend this historic event.

Here is the agenda for the Los Angeles Parity Field Hearing:

Add Your Signature!

The Eating Disorders Coalition encourages you to add your signature to this Petition:

http://www.thepetitionsite.com/654/724/598/disney-dont-promote-unhealthy-body-images-to-children/?z00m=20403315

• Target: The Walt Disney Company
• Sponsored by: Ann W.

Disney recently recreated its most beloved classic cartoon characters for an upcoming holiday promotion for Barney’s Department Stores. In the new ads, Minnie Mouse, Mickey Mouse, Daisy Duck and Goofy are all at least 5’11 in height, and are strutting sexily down a Paris Runway wearing clothes designed by Dolce & Gabbana and other high-end labels. Their limbs are gangly and their bodies have no shape. These new characters send a terrible message to young children reinforcing an already prevalent attitude that you have to be stick thin to be stylish.

Every day, children are inundated with unhealthy media images encouraging them to aim for unrealistic ideals of beauty perpetrated by corporate marketing machines. This has ultimately led to a nation of people with eating disorders such as anorexia and bulimia.

Please tell Disney NOT to allow these beloved characters to be used in such an unhealthy manner!

The EDC was invited to be a guest blog for Disruptive Women: Are anti-obesity efforts causing body image problems in kids?

Written By : Jeanine C. Cogan, Ph.D. on July 31, 2012

The Eating Disorders Coalition for Research, Policy & Action (EDC) is a non-profit organization working to advance the federal recognition of eating disorders as a public health priority.  Through education, lobbying and advocacy efforts we promote policies that address the problems faced by people with eating disorders, and that may prevent further people from developing eating disorders. We are a coalition of more than 35 organizations in the eating disorders education, prevention and treatment communities and represent millions of people impacted by eating disorders and their families, providers, researchers and advocates.  In this article we highlight two efforts currently underway.

Challenging Anti-Obesity Efforts

Anti-obesity efforts such as the one initiated by Michelle Obama, while often well-intentioned, are causing harm. A report published January 24, 2012 in Science Daily from the C.S. Mott Children’s Hospital National Poll on Children’s Health examines the association between school-based childhood obesity prevention programs and an increase in eating disorder symptoms among children.  The poll asked parents about obesity prevention programs in their children’s schools and about food-related behaviors and activity that may be worrisome.  Since the implementation of an obesity prevention program in the schools 30% of parents report at least one worrisome behavior in their children that could be associated with the development of eating disorders.  Additionally, 7 percent of parents report that their children have been made to feel bad at school about what or how much they were eating. These behaviors include inappropriate dieting, excessive worry about fat in foods, being preoccupied with food content or labels, refusing family meals and having too much physical activity.

Reports from Australia also indicate a high increase in eating disorders since anti-obesity campaigns began. A Medical Director of Mental Health at Australia’s Austin Hospital said he believed some of the 9 and 10-year-olds being treated for anorexia were becoming ill from “the panic” created by anti-obesity campaigns.

A substantial body of evidence from the eating disorder literature demonstrates that when important agents in children’s social environment (e.g. parents and peers) endorse a preference for thinness and place an importance on weight control, this contributes to body dissatisfaction, dieting, low self-esteem and weight bias among children and adolescents.  Studies show that body dissatisfaction and weight-related teasing are associated with binge eating and other eating disordered behaviors, lower levels of physical activity and increased weight gain over time.

The Solution

The focus of future “obesity interventions” should focus on health, not weight. Future interventions should focus not only on providing opportunities for appropriate levels of physical activity and healthy eating, but also specifically seek to promote self-esteem, body satisfaction, and respect for body size diversity.

The implementation of many anti-obesity programs is causing concern in that they may be promoting some negative consequences like an increase in eating disorders.  We urge any company, agency or department who is offering such a program to incorporate the latest scientific evidence and best clinical practices developed by the Academy for Eating Disorders:

• Studies show that body dissatisfaction and weight-related teasing are associated with binge eating and other eating disordered behaviors, lower levels of physical activity, and increased weight gain over time. Therefore, constructing a social environment where all children are supported in feeling good about their bodies is essential to promoting health in youth.

• Programs should be careful not to use language that has implicit or explicit stigmatizing anti-fat messages, like “fat is bad,” “fat children are not healthy,” or “fat people eat too much.” Interventions should focus not only on providing opportunities for appropriate levels of physical activity and healthy eating, but also promote self-esteem, body satisfaction, and respect for body size diversity.

• There is ample scientific evidence that an environment focusing on weight and thinness is a risk factor for eating disorders.  Moreover, a reliance on BMI as a proxy for health leads to many “false positive” assumptions of illness in healthy heavier children, and many overlooked problems of disordered eating and harmful weight loss practices in average-weight children.

• Interventions should be health-centered, not weight-focused, as weight is not a behavior and therefore not an appropriate target for behavior modification.  Children across the weight spectrum will benefit from a healthier diet, and more opportunities for physical activity. Therefore, interventions should be weight-neutral, i.e. aim to increase healthy living at any size rather than promoting specific goals for weight change.

The EDC has communicated our concerns directly to Michelle Obama urging her to change her anti-obesity (Let’s Move) Campaign.  We also worked with Congressman Hastings and 34 additional Members of Congress who sent a letter to Michelle Obama in 2010 asking her to expand the Let’s Move Campaign to focus on health more broadly and address the prevention of eating disorders.  Two years later, after no action on the part of Michelle Obama’s office and new evidence pointing to the harm created by anti-obesity initiatives in the schools, EDC worked with 22 Members of Congress on a follow-up letter sent in June of 2012. We also gained support from more than 40 organizations who endorsed this Congressional effort.

What You Can Do

Challenge anti-obesity initiatives and urge them to stop their potentially harmful efforts or change their focus.  Use this article as support for your efforts.

Join the nearly 100 other advocates that come to EDC National Lobby Days we hold twice a year and share your stories and perspectives.  For more information go to eatingdisorderscoalition.org.

Holding Insurance Companies Accountable

In early 2011 the EDC initiated the Hold Insurance Companies Accountable Campaign (HICA) in response to continued and consistent stonewalling tactics and inappropriate denials by insurance companies for life saving eating disorders treatment.  Consequences of not receiving necessary health insurance coverage include financial ruin for families paying out of pocket, a lack of life saving care, which leads to the worsening of symptoms and in some cases death.  Anorexia has the highest mortality rate of all mental illnesses, upwards of 20%.  Individuals with anorexia nervosa are 11 times more likely to die than their peers and they are 57 times more likely to die of suicide. Mortality rates are also higher for people with bulimia nervosa (3.9%), and eating disorders not otherwise specified (5.2%).

According to the nationally recognized law firm of Patton Boggs, the mental health parity statute clearly states that limits on the scope and duration of treatment must be applied no more restrictively in the mental health benefit than in the medical/surgical benefit. The statute defines treatment limitations as “limits on the frequency of treatment, number of visits, days of coverage, or other similar limits on the scope or duration of treatment.”

Not complying with the parity regulations is a calculated effort to avoid costs at the expense of people’s health and lives.  Treatment should be determined by the treating professional based on severity and type of illness, rather than what is arbitrarily allowed by an individual’s insurance company. Through legal and political advocacy, the EDC’s Hold Insurance Companies Accountable Campaign is working with specialized attorneys and experts in the field to put an end to such discriminatory and deadly practices.

What You Can Do

1. Write to your insurance commissioner. Insurance commissioners have the responsibility of protecting the interests of the consumer. They need to hear from those who are not receiving necessary treatment because insurance companies refuse to pay. The more people who write, the bigger the impact. To write your commissioner go to eatingdisorderscoalition.org and click on the HICA link.

2. Call your Members of Congress. A key role of legislators is to take care of constituent concerns. In fact every Member of Congress has staff hired specifically to do so. If your insurance company is stonewalling care, legislators need to know and may be able to help. To look up your legislators for the Senate go to senate.gov and for the House go to house.gov.

Update from EDC in DC

Quick update from Washington, DC

EDC just left Capitol Hill where we met with key administrators for parity and the implementation of ACA, Pam Hyde from SAMHSA and Sherry Glied with HHS and again raised the issue of eating disorders and continuous denial of residential and other eating disorders treatment. They told me that they appreciate us consistently raising this issue and that SAMHSA and HHS are putting a lot of resources into researching the trends of denying residential both pre and post parity. I spoke with Pam Hyde and HHS leaders on how we can work with them to remedy this issue.

We will keep up the pressure until we see results!

The Eating Disorders Coalition for Research, Policy & Action (EDC) Applauds the Supreme Court's Ruling to Uphold the Affordable Care Act.

This is a huge victory for millions of Americans needing health care coverage for eating disorders. Unfortunately too many people seeking treatment for eating disorders today are denied life saving care due to stonewalling tactics and inappropriate denials by health insurance companies. With the passage of the ACA and a number of key provisions such as the law's guarantee of coverage for people with pre-existing conditions and the requirement to cover mental health as an essential health benefit, some of the widespread discriminatory practices by insurance companies against people with eating disorders may come to an end. The ACA is an important step in holding insurance companies accountable. The EDC will continue our aggressive efforts to influence the implementation of the ACA at the Federal level so that people with eating disorders receive the treatment they need and deserve.

What the EDC has done?
-Attended regional forums with the Department of Health and Human Services (HHS) with specific recommendations to ensure treatment for eating disorders is part of the ACA.

-Submitted comments to HHS during the open comment periods with specific recommendations to ensure treatment for eating disorders is part of the ACA.

-Met more than once with key officials at HHS with specific recommendations to ensure treatment for eating disorders is part of the ACA.


What can you do?
Contact your state legislators and/or ACA implementation committee to learn how you can be part of the discussions and influence the process. Be a voice for eating disorders treatment and make sure that gets included in each state's implementation.