CIVICS 101: Getting Legislators’ Support for Eating Disorders Prevention and Treatment

Photo Credit: Creative Commons by Blue Diamond Gallery

In today’s political climate, the impact of our government on the details of our lives is clearer than ever.  So too is the impact we can make as vocal, active constituents.

Over the past decade, through the work of sympathetic lawmakers, staffers, former patients, affected family members, and dedicated advocates, lawmakers in Albany have recognized the need to eliminate the suffering caused by eating disorders. They have been valuable players in helping to advance training, treatment and prevention programs.

NYS lawmakers’ involvement in helping constituents with eating disorders and their families began over 10 years ago when legislators observed the difficulties faced by families in getting the right treatments, and achieving lasting remission. As a result, they created Comprehensive Care Centers for Eating Disorders (CCCED).  Designated a Center of Excellence by the State of New York when first funded, the Centers’ existence is nonetheless in jeopardy each year, which necessitates an annual pilgrimage to Albany to advocate for continued funding for our programs.

What is the Comprehensive Care Centers for Eating Disorders (CCCED)?

The NYS Comprehensive Care Centers for Eating Disorders is a network of institutions and providers from three regions in New York State who specialize in caring for patients with eating disorders. Each regional program consists of several local providers in that region as well, with the goal of providing comprehensive, coordinated care to individuals with these illnesses.

The Centers serve patients, families and their communities, by funding services not covered by insurance.

What did the CCCED achieve in 2016?

This past year, our funding allowed us to expand in many ways, including:

  • Treatment: Hospital discharge from an inpatient psychiatric treatment can be a high-risk time for relapse. CCCED funding this year allowed us to develop several services focused on helping patients continue their progress during this time of transition. In addition to creating a new partial/intensive outpatient program in the metro region, we also expanded our case management and care coordination services. These services provide guidance for patients as they navigate transitions between levels of care.
  • Provider training: Although early identification of disordered eating in teenagers is critical for preventing serious complications, many pediatricians are still not aware of the warning signs. To help spread knowledge about eating disorder signs and symptoms, as well as how to respond to these, we launched a new program—Project ECHO for eating disorders—to provide training to primary care providers via video-conference learning.
  • Prevention: The school setting is another venue where adults caring for kids and teens—teachers, aides, nurses, and coaches—can play a key role in helping identify at-risk adolescents before symptoms worsen. To help increase school’s capacity to do so, the CCCED afforded us the opportunity to train school communities – informing teachers and school health staff about early identification and treatment options for eating disorders.

What’s next in advocacy?

CCCED members were joined by NEDA staff, former patients, and their families on a day of advocacy.

On February 7, a team of us from the Metropolitan CCCED, along with colleagues from NEDA, made what has become an annual journey to Albany to advocate for continued funding. The day was spent in back to back meetings with legislators (or their designees) who may be able to influence the governor’s budget this year. We, of course, provided legislators with information about these very serious disorders, but as usual, the most powerful part of our discussion was when families and patients shared their stories. This year, we were joined by parents who had lost their daughter to an eating disorder as well as several former patients who generously shared their stories of healing and recovery. Former patients described how the CCCED was an integral part of their journeys. For example, for one patient, having a case manager enabled her to identify a treatment team at each stage of her recovery; after many relapses, this made the critical difference in her achieving extended recovery.

Eating disorders are a bipartisan issue. On a national level, for example, the 21st Century Cares Act passed in Congress in 2016 was supported by democrats and republicans alike. This important legislation makes it more difficult for insurers to deny coverage for residential eating disorder treatment. With the approximate cost of some residential programs approaching $30,000 per month, this bill will enable more patients to receive needed care.

On a state level, we continue to appreciate the support of lawmakers in helping to reduce the burden of these conditions and we remain committed to continued advocacy efforts. We hope that the CCCED can serve as a useful model of how a state can create a network to enhance the resources available for patients.

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