Winter 2017
The Docket
Quarterly Newsletter

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What's Inside...
  • A Message from the Executive Director
  • Fighting for Mental Health and Substance Use Parity
  • Staff Profile: Lauren Bentlage
  • Client Profile: Peter
  • Call for Public Interest Fellows!
  • Thank you for Making our 21st Annual Benefit Breakfast a Success!
  • HLA Staff News
Staff Spotlight 
Lauren Bentlage   
The N. Neal Pike Fellow Advocates for Mental Health and Substance Use Parity 

In September, Health Law Advocates welcomed Lauren Bentlage as a staff attorney on our Mental Health and Substance Use Parity Initiative. Lauren is the 2016 recipient of the N. Neal Pike Disability Fellowship from the Boston University School of Law. Lauren's passion for health care access and social justice is exemplified in the variety of her professional experiences. Her background also provides Lauren with a unique and valuable perspective into our health care system which helps make her a superb advocate.

Prior to attending law school, Lauren received a Master's degree in Counseling Psychology from Boston College. After receiving her graduate degree, Lauren worked as a mental health counselor and then as a clinical supervisor at Youth Villages, Inc., a private non-profit provider of services to children with behavioral health conditions. While at Youth Villages, Lauren provided clinical treatment and 24/7 crisis response for young adults aging out of foster care, advocated on behalf of young adults in need of services, and worked with government agencies, schools, and the legal system to find solutions to complicated problems.

As Lauren continued working with these young people, many of whom were homeless and not receiving necessary mental health services, she became more and more frustrated with the systems that failed to address children's issues. As Lauren puts it, "I was limited to a reactive role of picking up the pieces from everything that went wrong." Lauren wanted to make an impact that would affect our community further up the pipeline, and saw tangible change possible by advocating for better and more comprehensive policy.

In 2013, Lauren enrolled in Boston University School of Law, where she continued the fight for justice in the  health care and legal systems. She interned at the Orleans Public Defenders in New Orleans, the Dana-Farber Cancer Institute right here in Boston, and advocated for housing rights in the Legal Services Department at AIDS Action Committee. 

As a former health care provider, Lauren has a deep understanding of the challenges that consumers face when trying to access the care they need. "There's an exceptionally high level of sophistication needed to navigate the health care system. Do you have a computer? Do you have a phone? Do you have a home address? It's challenging to get the health care y ou need when you don't have the basic resources others take for granted," Lauren told The Docket. 
 
Lauren is not only helping her individual clients access care, but improving the system to provide greater access to services for vulnerable consumers generally. "At HLA, it's the 10,000-foot view. We're representing individuals
and recognizing systemic patterns. And the wins are tangible. The people here are so competent and inspiring - and it's gratifying to see victories on a daily basis. But there's still much to do."   
 Call for Public Interest Fellows!

HLA seeks recently admitted attorneys to serve as fellows with us. We strongly encourage new attorneys to contact HLA if they have an interest in applying for a fellowship(s) to serve at HLA. We have hosted new lawyers participating in public interest fellowships from their law school, with the AmeriCorps Legal Advocates of Mass. program, and Equal Justice Works. Fellows serving at HLA gain invaluable legal experience while serving some of the most vulnerable members of our society. Please contact HLA's Executive Director Matt Selig if you wish to serve a fellowship at HLA.   
Thank you for Making our 21st Benefit Breakfast
a Success!

Larry Wilmore, speaking at HLA's Benefit Breakfast on November 16, 2016.
 
On Wednesday, November 16, approximately 800 HLA supporters joined us at the Sheraton Boston Hotel to celebrate 21 years of Fighting for Health Care Justice - and look forward to a future of continued advocacy for Massachusetts' most vulnerable residents.

We are enormously grateful to our 2016 Breakfast Sponsors, who make our work possible, and to those who delivered remarks and performed at the event. In particular, t hank you to Larry Wilmore for his on-point commentary and fierce wit. To former Governor and HLA Board Member Michael Dukakis for sparking passion in seemingly daunting times. To our musical guests, the brilliantly talented David Eure and Edvard Lee. To HLA founder Steve Rosenfeld, who reminds us that we CAN make a difference. To Lisa Ford, an HLA client who advocated for her son and shared her story (view the video here). To our wonderful Co-Chairs, Dave Szabo and Chris Jedrey! You both are a delight and a pleasure to work with.

Check out more photos on Facebook here!

For more information about HLA's 22nd Annual Benefit Breakfast, contact Emily Tabor

HLA Staff News
 
In addition to Lauren Bentlage, please join us in welcoming the following recent additions to our fantastic staff:

Michelle Virshup joined HLA as our Parmet Fellow in August. Michelle graduated from Northeastern University School of Law in May 2017 and previously completed co-op placements with Kotin, Crabtree & Strong; Morgan, Brown & Joy; Partners Healthcare and the U.S. Attorney's Office, District of Massachusetts.

John J. White III
, joined HLA as an AmeriCorps Legal Advocates Fellow in September. John graduated from Suffolk University Law School in May 2017 after previously participating in the law school's Health Law Clinic as a Student Attorney. He also served legal internships with the Disability Rights Center in Concord, New Hampshire and the Suffolk County District Attorney's Office.

Sharon Jaquez
joined HLA in January as our Paralegal/Intake Coordinator. Sharon, a co-op student at Northeastern University, has previous experience working for New England Baptist Hospital and she is bilingual in English and Spanish.

Gilbert Benavidez joined HLA in December as a Masters in Public Health intern. Gilbert is helping assess the impact of HLA's Juvenile Court Mental Health Advocacy Project. Gilbert will receive his Masters in Public Health from Boston University in May 2017.     

We also bid a bittersweet farewell in December to:
 
Christina Carver was HLA's devoted Paralegal/Intake Coordinator through Northeastern University's co-op program. Christina will be returning to classes this winter and will graduate in May 2017 with a degree in International Affairs and Political Science.

Sophie DeGroot
was HLA's valued Development Assistant through Northeastern University's co-op program. Sophie played an important role planning HLA's 21st Annual Benefit Breakfast in November. Sophie will return to classes this winter and will graduate in May 2017 with a degree in Medical Anthropology. 
 
   Thank you for the fabulous work you've done at HLA. We wish you all the best in your future endeavors!

View a list of our current staff here
 
A Message from the Executive Director
 
Dear Friends, 

Happy New Year. Thank you very much for your support of HLA throughout 2016. Your generosity made it possible for us to represent the most vulnerable low-income consumers in the health care system to ensure they receive the care they need.

If you have been keeping tabs on HLA, you know one of our leading priorities remains mental health and substance use parity. In fact, HLA is among the nation's leading advocacy organizations fighting for parity. Making sure that coverage for mental health and substance use is equal to coverage for other types of health care is critical for people to have access to the services they need to live healthier lives. With your help, we have made some very important progress toward real parity, but there is still critical work to do to achieve full equality.

This issue of The Docket is (mostly) dedicated to an in-depth look at our mental health and substance use parity advocacy. I hope you find the content informative and encouraging. We welcome hearing your thoughts about this work.

HLA is honored and grateful that our work on mental health and substance use parity in 2016, in particular parity for children, was supported by generous grants from The Peter and Elizabeth C. Tower Foundation, The Nord Family Foundation, The MetroWest Health Foundation, The C.F. Adams Trust and generous financial support from Boston Children's Hospital and many other corporate and individual donors. Please consider adding your support so we can continue removing pervasive barriers to mental health and substance use care.  
 
We hope to see you soon .  

With appreciation, 
Matt Selig
Executive Director   
Fighting for Mental Health and Substance Use Parity
From representing individuals to advocating for stronger policy

Consumers contact HLA on a regular basis when they have difficulty accessing mental health and substance use care due to lack of coverage by their health insurer. Those who come to HLA for help are hardly the only ones having trouble getting such coverage. A 2016 National Alliance on Mental Illness report on parity concluded that nationwide "(c)onsumers continue to face significant challenges...paying the bill for mental health care." Meanwhile, our state's most recent stats on health plan appeals, show that fully 45% of appeals of coverage denials are filed by those denied mental health or substance use care. This shouldn't be the case because we have strong federal and state mental health and substance use parity laws that require insurance coverage for treatment of these conditions to be on par with coverage for treatment of other illnesses.

HLA challenges mental health and substance use insurance discrimination
President Obama speaking at the National Rx Drug Abuse and Heroin Summit in Atlanta on March 29th
through our Mental Health and Substance Use Parity Initiative. The necessity of our advocacy in this area, and our progress, were reflected in President Obama's March Presidential Memorandum establishing a U.S. Parity Task Force. This action recognized that consumers do not yet receive the full protections of the federal parity law and federal and state agencies need to greatly improve enforcement of parity. Throughout 2016, HLA engaged in nationally-recognized advocacy to improve access to mental health and substance use treatment for consumers through parity and we will continue to do so in 2017.
 
Representing Low-income Clients
 
HLA provided pro bono legal representation to scores of low-income consumers who were denied coverage in 2016 for treatment for mental health and substance use conditions. We handled cases involving denials of coverage for treatment of a wide range of conditions including deadly afflictions such as substance use, eating disorders and depression. Our team helped low-income consumers receive a variety of services such as residential treatment, prescription medications and intensive outpatient therapy. An example of our work representing consumers is described below in our profile of our client Peter. We strongly encourage anyone who needs help, or knows someone who needs help, with a denial of coverage for mental health or substance use care to contact us at 617-338-5241.  
 
Advocating for Policy Reform

While legal action on behalf of consumers is a powerful tool for challenging health insurance discrimination against those with mental illness and substance use disorders, we believe advocacy to spur governmental action is also absolutely critical. The federal and state parity laws are enforced by numerous agencies on the state and national levels. This overlapping jurisdiction complicates enforcement of these measures, but provides greater opportunity to achieve meaningful policy reforms.

HLA advocates for governmental action to achieve parity with our fellow members of the Massachusetts Mental Health and Substance Use Parity Coalition which HLA formed several years ago. Our Coalition partners are advocacy organizations committed to full implementation of the parity laws. 
 
We are proud of the progress we made with our policy advocacy in 2016. In March of 2016,
HLA's Parity Initiative Director Clare McGorrian at the North Shore Community Health Network on May 18th
the federal government took an important step in expanding parity protections to millions of low-income and disabled Americans, including hundreds of thousands in Massachusetts, by issuing regulations requiring parity in the Medicaid program. HLA previously submitted comments to the federal government with 15 other Parity Coalition members to state our case for strong regulations. 

Also in March, in response to the steady call for greater parity enforcement from HLA and many others across the country, the President created the Parity Task Force to implement action to advance parity. HLA participated in meetings of the Task Force and submitted recommendations with our Coalition partners. The Task Force's Final Report adopted many of our positions on how to achieve full parity.

Closer to home, HLA's parity advocacy made an impact on state government enforcement of parity in 2016. After HLA helped a Framingham family overturn their health insurer's denial of vital autism services for two children because the parents couldn't be present during the services, the Massachusetts Attorney General invoked the state parity law in reaching a settlement with the health insurer in February requiring the insurer to end its policy of requiring parental presence for the autism services and reimburse other families previously denied coverage under that policy. HLA also advocated with the state's Division of Insurance (DOI) to make its parity complaint process more user-friendly and to seek federal funding to enhance state parity enforcement. HLA is grateful that the DOI applied for and received $1.2 million in federal funds in October to ramp up enforcement of parity and other consumer protections.

HLA's Matt Selig at the U.S. House Energy and Commerce Committee on Sept. 9th
Back in Washington D.C., HLA shared its parity expertise with members of Congress as they considered legislation to enhance the federal parity law. HLA's Executive Director Matt Selig was one of three invited to testify in September before the U.S. House Committee on Energy and Commerce. In his testimony, Matt voiced support for legislation filed by Congressman Joseph P. Kennedy III and other bipartisan measures. The Hill  published Matt's op-ed on parity later in September. The Congress ultimately included important measures to strengthen enforcement of the federal parity law in the 21st Century Cures Act that was signed by the President on December 13th.
 
Outreach to Communities 
 
HLA believes that greater awareness of the parity laws among consumers, advocates, health care providers, insurers and policymakers is one of the most important ways to achieve parity and greater access to care. The Final Report from the President's Parity Task Force in October endorsed "the need to improve parity awareness" because parity "can be difficult to understand; yet consumers must know what their rights are and how to raise questions and concerns."   
 
In order for HLA to advance parity awareness, we first make sure we are on top of the law ourselves. As new statutes, regulations, government agency guidance and court interpretations bolstering the parity laws continue to emerge, HLA carefully analyzes how they all impact the parity landscape.

HLA conducted 21 training
HLA's held 21 Parity Trainings in Barnstable, Essex, Middlesex,
Plymouth and Worcester counties in 2016  
programs in 2016 for families, care providers, advocates and others in communities across the eastern half of Mass. These programs empower attendees to make treatment more accessible by asserting their rights under the parity laws.

We are eager to conduct more educational programs on parity. If you wish to arrange a program please contact Clare McGorrian, Director of our Parity Initiative. If you wish to provide financial support that will enable us to conduct additional parity programs you may contribute online or contact HLA's Executive Director Matt Selig.
 
Client Profile: Peter
A young man with autism struggles to obtain the therapy he needs to fulfill his potential



As a young child, Peter was diagnosed with Autism Spectrum Disorder (ASD). Applied Behavior Analysis (ABA) is recognized as the most effective treatment for autism. For years, insurance companies did not cover ABA. Then, in 2010, the state enacted An Act Relative to Insurance Coverage for Autism (ARICA). This law requires insurance companies in Massachusetts to provide comprehensive coverage of autism treatment, including ABA. Peter received limited ABA services in school. After Peter completed high school, his parents sought further ABA to help Peter develop the skills he would need in adulthood.
 
Autism is a permanent condition and Peter continues to struggle with skill deficits and behavior challenges. But with the help of ABA Peter, now 26, volunteers at a nursing home and at a local food pantry. He has made progress in communicating and interacting appropriately with coworkers and customers. He engages with his community, using the library, going to restaurants and making purchases in stores, among other activities. None of this progress would be possible without ABA.
 
Habilitative care is care necessary to develop, maintain and restore, to the maximum extent practicable, the functioning of an individual. ABA is often habilitative in nature. This means ABA can be medically necessary both when it results in improvement and when it prevents the patient's condition from worsening. Because insurers have generally required improvement to find medical necessity, they may deny habilitative ABA. In Peter's case, that is exactly what happened.
 
Since 2014, Peter has had an individual policy purchased through the Health Connector. Getting the insurance company to cover ABA for Peter has been a continuing struggle. The insurer has repeatedly sought to terminate coverage of Peter's ABA treatment. In its denials of coverage, the insurance company has asserted that Peter is not going to improve, that he should be transitioned to an "adult placement," and that Peter's parents can provide the care he needs.
 
Peter's mother first contacted HLA in July 2014, when she received the first of several adverse decisions from Peter's insurer. HLA Senior Staff Attorney Clare McGorrian appealed to the insurer on Peter's behalf. While the decision was a partial win - continuing Peter's coverage until he had a psychological evaluation - the appeal combined with advocacy by the ABA provider resulted in coverage for much of Peter's ABA services until May 2016.
 
On May 2, 2016, Peter's mother and guardian Ruth received yet another notice that the insurer was denying coverage for ABA. She protested by filing an internal appeal with the insurer. At the end of June, the internal appeal was denied. This time HLA took the case to external review through the state's Office of Patient Protection. Letters from Peter's doctors and other providers stated unequivocally that ABA therapy is medically necessary for Peter. Clare argued that Peter requires ABA to develop and maintain behaviors that permit him to live more fully and independently. She pointed out that denying ABA to an individual with autism based on age is invalid under ARICA as the law has no age limit. Moreover, ABA has been shown to be effective across the life span. Coverage for ABA must be based on the specific symptoms and response of the individual. The decision to terminate Peter's ABA to transition him to "adult" services was improper and unfounded based on the evidence.

In September, the external review agency issued a fully favorable decision, and coverage of Peter's ABA services was reinstated. Peter continues to successfully volunteer at the nursing home and food pantry, and he is making progress through ABA. HLA will continue, through its Parity Initiative, to advocate for consumers like Peter, for whom coverage of mental health services is denied or terminated unjustly. Every person deserves to live fully and independently and to fulfill their potential.