Parity for Behavioral Health Coverage Delayed by Lack of Federal Rules

By MICHAEL OLLOVE, STATELINE

DEC 02, 2012

This story comes from our partner Stateline, the daily news service of the Pew Center on the States.

Danielle Moles is anorexic, which in her case played out not only in a near-starvation diet but also in obsessive running. She ran during tornados. She ran in temperatures that fell to 20 degrees below zero and froze her ponytail solid. She ran a marathon with a stress fracture in her foot. She ran when she was supposed to be at birthday parties and bridal showers and family vacations. She ran until she literally passed out.

Even with all that exercise, Moles convinced herself it wasn’t enough. She denied herself liquids to punish herself. She purged. She abused laxatives so frequently that she permanently damaged her digestive system and wore the enamel off her teeth. Her body rebelled in other ways as well: She stopped menstruating. She was persistently light-headed and nauseated. She began having seizures. One particularly awful night in 2008, she tried to end it all with a half-bottle of Ativan.

There were more consequences to her destructive behavior. She miscarried. Her marriage fell apart. Her career as a nurse foundered.

Doctors diagnosed Moles, now 32, with anorexia and depression, and prescribed long-term care in a residential psychiatric facility. But Moles’ insurers said she wasn’t covered for such care. About a year ago, her insurer finally agreed to pay for three months in an Illinois residential psychiatric facility. Those three months proved more effective than anything she had tried previously. Eight months after Moles left the facility, her weight had stabilized at 120 pounds—only five pounds less than her doctors recommend—and she hasn’t run in a year.

Moles doesn’t understand why her insurance company resisted paying for the residential care she needed, especially because it would have covered lengthy in-patient care to recover from a stroke or heart attack. “I don’t understand why mental health isn’t as recognized as much as a physical condition,” she says. “This is just as debilitating.”

A Law but No Rules

Congress recognized that equivalence in 2008 when it passed the Mental Health Parity and Addiction Act, which requires insurers to cover mental illness and substance abuse treatment on an equal basis with physical ailments. The law, which passed with substantial bipartisan support, was supposed to eliminate two-tiered systems for co-pays, deductibles or treatment limitations.

The Obama administration's Affordable Care Act will vastly extend the reach of the 2008 law. The older law does not require health insurance plans to offer behavioral health coverage, although if they do it must be on par with benefits provided for medical and surgical care. But the ACA does require that all health plans sold on the soon-to-be-created state health insurance exchanges eventually offer mental health coverage. Those plans, then, will all be required to observe the federal parity act.

The problem, behavioral health advocates say, is that more than four years after President George W. Bush signed the parity bill into law, the Obama administration has yet to complete the federal rules that would enable states to enforce it.

As a result, behavioral health may actually have fallen further behind since passage of the law. In May, the U.S. Government Accountability Office released a report showing that health insurance plans have actually increased the number of exclusions for mental health and addiction treatments since the law was enacted. In 2010 and 2011, for example, 15 percent of the plans surveyed by the GAO were excluding residential mental health, a significant increase from 2008.

"Hundreds of thousands of Americans are being denied their rights under the federal parity law," says James Ramstad, a former Republican congressman who originally introduced the House version of the bill in 1996 at the request of his friend and fellow Minnesotan, the late Democratic Senator Paul Wellstone, whose name is memorialized on the law. Wellstone was killed in a plane crash in 2002. "It took 12 years to pass that parity act and four years later, we still have no rules and therefore no enforcement," says Ramstad. "It’s unconscionable."

Ramstad and another former congressman, Patrick Kennedy, whose father, Sen. Edward Kennedy, also championed the law after Wellstone’s death, have been convening meetings across the country in which experts and patients -- some of them of them soldiers returning from war in Iraq or Afghanistan -- testify in support of the law. The motive of the meetings, Kennedy says, is to publicize the parity law and prod the Obama Administration to act.

"Right now, there are no regulations telling the insurance companies how to comply," says Kennedy. "A law without rules isn’t worth the paper it’s written on, and what that means is that insurance companies can continue to do business as usual."

Victoria Veltri, Connecticut’s Health Advocate, agrees. She says pushing insurers to observe parity is difficult without the specific requirements federal rules would spell out. "It makes it very difficult to make arguments about whether the criteria the insurers are using pass muster or not."

The U.S. Department of Health and Human Services had not responded to multiple requests for comment at the time this article was published.

Some Progress

Some states, including Connecticut, Maryland, Maine, Oregon, and Vermont, have enacted strong laws to beef up coverage of behavioral health, but those statutes do not cover all health insurance plans, including those issued by the many large employers which insure their own workers.

States that refuse to enforce the parity act after HHS releases the rules likely will face lawsuits from patients, as well as pressure from the Obama administration, which has the authority to enforce the law if the states do not.

Even without the final rules, the broad outlines of what parity will look like are relatively clear: Insurance companies will not be permitted to impose more restrictive spending limits on mental health or addiction benefits than they impose on medical and surgical benefits. They will not be able to limit the frequency or duration of mental health treatment more severely than they do for other forms of care, nor will they be allowed separate deductibles or more restrictive authorization rules.

Andrew Sperling of the National Alliance on Mental Illness says that even without final federal rules, insurance companies generally have eliminated separate deductibles and scrapped unequal spending limits. But Sperling and other advocates say insurers continue to disallow mental health and addiction treatments in non-hospital based facilities, and also to exclude types and levels of treatment for behavioral patients, while covering a full range of treatments for medical patients. They also say that behavioral health patients are often subject to reviews and criteria that are not required of patients on the medical and surgical side.

Fail First

Substance abuse treatment advocates are particularly troubled by the requirement that people with addictions fail at lower levels of care before they are approved for more intensive treatments. They say the "fail first" requirement would never be tolerated for medical and surgical patients.

"It’s a classic example of discrimination and a moral overtone that is a remnant of the past that still lingers," says Beth Middlebrook, legal coordinator of Watershed Addiction Treatment Programs. "It comes from the belief that the alcoholic is a bad person as opposed to a person with a bad disease."

Susan McClanahan, Danielle Moles' psychologist, is convinced that Danielle has paid a heavy price because of the unequal treatment accorded behavioral health patients.

"If she had been able to have a residential stay earlier," says McClanahan, "the course of her illness would not have been so long."

There might have been other benefits as well. Had Moles gotten the help she needed at the beginning, her treatment might have cost her insurers roughly $80,000 instead of the $500,000 to $750,000 she estimates they eventually shelled out. (Moles estimates she has paid $150,000 out of her own pocket.) She also might have avoided the physical ailments she has today that resulted from her mental illness, including seizures and chronic pain in her back and knees.

"I’m terrified that I won’t have the life of normalcy I long for," she says. "I want to have a relationship again. I want to have children. I want a profession and career that I love."

She can't help wondering whether she’d already be living that life it if she had gotten the help she needed when she needed it.

Advocates Push for More Research Into Eating Disorders

CQ HEALTHBEAT NEWS
Nov. 29, 2012 – 4:17 p.m.
By Jane Norman, CQ HealthBeat Associate Editor

Medical experts, parents and researchers Thursday called for more federal attention to research, education and treatment for eating disorders, a mental illness that can lead to medical complications and even death.

In a briefing at the Capitol, members of the Eating Disorders Coalition and F.E.A.S.T., another advocacy group, said that such chronic illnesses as anorexia, bulimia and binge eating are widely misunderstood and too often blamed on parents or the patients themselves. “These are very, very serious, very dangerous disorders,” said Mark Chavez, chief of the eating disorders program at the National Institute of Mental Health.

The disorders — like many mental illnesses — also carry a stigma, advocates said. “We have been ashamed and we have stood back,” said Laura Collins, executive director of F.E.A.S.T. “We know patients do not choose to be ill. Families do not cause eating disorders and I am sorry I even have to say that.”

Advocates said that at least 11 million Americans have an eating disorder and it’s the third most common chronic illness among adolescents. The disorders, characterized by eating very small amounts of food or very large amounts, often are thought to be genetic in origin. “Severe distress or concern about body weight or shape may also characterize an eating disorder,” says NIMH material on the illness.

According to NIMH, the disorders frequently appear during childhood or the teens. And Chavez said patients with the disorders tend to have both psychiatric and medical conditions. Depression and anxiety may co-exist with cardiac problems, brain damage and osteoporosis, all particularly dangerous in growing children and teens. And insurance coverage for treatment is often skimpy or non-existent, parents said.

One problem is that there’s no clear answer as to how or why disorders are triggered, said Julie O’Toole, a physician who runs a treatment clinic. That makes prevention difficult. “We need to focus like a laser on early recognition,” said O’Toole.

Parent Amy Snyder talked about her 7-year-old daughter, who told her mother she heard a “mean voice” in her head that instructed her to not eat, which is common among patients. “Essentially the child is afraid to eat. They’re afraid of food,” said Snyder, who found effective treatment following an initial misdiagnosis by a pediatrician of her daughter’s symptoms of dizziness, itchy skin and constipation.

The briefing for congressional staff was sponsored by Senate Health, Education, Labor and Pensions Committee Chairman Tom Harkin, D-Iowa, who has sponsored legislation (S 481) on eating disorders that has not yet been taken up by the panel. He is expected to re-introduced it next year. A companion bill (HR 1448) has been introduced in the House by Rep. Tammy Baldwin, D-Wis., who was elected to the Senate earlier this month.

Under the measures, federal research would be funded that would determine the prevalence of all eating disorders as well as the mortality rates and the associated health care costs. There would also be a study of mandatory BMI reporting in schools, a grant program for training and educating professionals and public service announcements on eating disorders.

The House bill would require that any health insurer that provides health coverage for physical illnesses must provide coverage for eating disorders, and that insurers are required to follow standards of care for patients with eating disorders as laid out by the American Psychiatric Association. Both the House and Senate bills would require eating disorder treatments be covered by Medicaid, and that children enrolled in Medicaid be screened for eating disorders.

Advocates acknowledged it’s an uphill fight to find new funding in a tough budget environment but said they will persist. “This is a pretty young bill,” said Jeanine Cogan, policy director of the Eating Disorders Coalition, noting it was first introduced in the House in 2009 and in the Senate in 2010.

Jane Norman can be reached at jnorman@cq.com.

EDC Blog named one of the best Eating Disorder Blogs of 2012!

We are thrilled to be included among the best 18 Eating Disorder Blogs of 2012 from healthline.com

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Action Alert: Parity Sign On Letter

Dear EDC Advocate:

As we approach the fourth anniversary of the enactment of the Mental Health Parity and Addiction Equity Act (MHPAEA) on October 3, 2008, we are asking for your help to make the purpose of the federal parity law a reality.

Although MHPAEA was enacted nearly four years ago, a final rule implementing the law has not yet been issued. Without a final rule from the Administration, many individuals seeking care for eating disorders, mental health and addictive disorders have been unable to access the health care services they need.

Please ask your Member of Congress to sign the letter to the Administration asking them to issue a final parity rule and provide an update on progress made thus far in implementing the law. The EDC is working in collaboration with the mental health community on this effort. Go to the following link offered by one of our collaborators Faces and Voices of Recovery to act now!

http://org2.democracyinaction.org/o/7158/p/dia/action/public/?action_KEY=11753

Members of Congress should contact Melissa Gierach with Rep. Sullivan (R-OK) or Anne Sokolov with Rep. Ryan (D-OH) to sign on to the letter.

The deadline for Members of Congress to sign on is October 5.

Members of Congress who have signed on thus far include:
• Tonko (D-NY)
• Kaptur (D-OH)
• Bono Mack (R-CA)
• Moran (D-VA)
• Brown (D-FL)
• Quigley (D-IL)
• Lewis (D-GA)
• Holden (D-PA)
• McGovern (D-MA)

Thank you for adding your voice to this effort of making parity a reality!

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.

• Trends
• Strategy
• Law & Policy
• Populations
• Healthcare Reform


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: