Zooming in on Advocacy

What a difference a year makes! As we all have had to adjust our work and personal lives to adhere to COVID restrictions, our annual advocacy day was no exception.

We did not need to catch an early morning train, or race from the Capitol building to the Legislative building multiple times, or divide into teams for concurrent meetings. Instead, we packed our schedule with back-to-back Zoom meetings with senators and assembly members who represent our districts and are members of the mental health committee.  

Leadership from the three centers that comprise the Comprehensive Care Centers for Eating Disorders were present along with government affairs staff and most importantly, those with lived experience, whose stories never get old and move everyone to tears, some of sadness and mostly of joy.

As a reminder, in 2004, New York State passed a law to create and fund this statewide network. The goals were to:

  1. enhance comprehensive, coordinated and continuous specialized treatment for eating disorders,
  2. facilitate early intervention, and
  3. avoid complications along with repeated, costly hospitalizations.

The three regional centers (Western NY, based at The University of Rochester School of Nursing/Golisano Children’s Hospital, Capitol District, at Albany Medical Center, and Metropolitan NY, comprised of the New York State Psychiatric InstituteNew York-Presbyterian Hospital, and Cohen Children’s Hospital) cover all of New York State, and are considered models of care and a designated Center of Excellence. Each geographical area has slightly different expertise and services, and together comprise a comprehensive set of services to help keep people in state for treatment.

Each year, we meet with officials in Albany to ask them to provide legislative funds to supplement limited dollars that are allocated to our programs in the governor’s budget. Our main source of funding over the past several years has come from a legislative add-on (the two houses reach agreement on spending and revenue recommendations, which are reflected in amended versions of the Governor’s proposed appropriation bills and related legislation), as the funds in the governor’s budget cut our total budget by 90%.

These critical funds enable us to provide care management, peer mentoring, day programing, education and other services not reimbursed by insurance. They allow us to weave together comprehensive, coordinated services across New York State to serve this vulnerable population. While we were asking for money for this coming fiscal year, the money that had been allocated last year was withheld due to COVID, making it difficult to maintain all services at their prior levels.

Since many legislators we met with this year are new to their roles, we provided an overview of eating disorders along with our services. Key points included:

  • Eating disorders are serious, biologically-influenced disorders
  • Eating Disorders affect diverse populations
  • Comprehensive, coordinated care saves lives and dollars
  • Evidence-based, recovery-focused care can be obtained in-state
  • Education of parents, providers, and patients plays an important role

We were fortunate again to be joined by those with lived experience (i.e., individuals who have a personal eating disorder history). These individuals do what all of the education in the world cannot — they provide moving and influential testimony on what it is like to be affected by eating disorders. This year, individuals yet again courageously shared the details of their journeys of illness and recovery, and descriptions of how our services have helped them. Stories of hope and recovery balanced the tragic description of what can happen when services are not available. We applauded their bravery in reliving their stories, delighted in hearing about the adolescent and young adults who are now re-engaged in their lives, finishing high school or college, and sat with sadness when hearing about what can happen if help is not available. Notably, it has become more commonplace to hear responses from legislators that include mention of their own first- or second-hand knowledge of people who have experienced eating disorders.

We reminded and thanked legislators for prior funding that allowed us to continue to function as a Center of Excellence, maintaining ongoing services such as care management, partial hospital and day programs, nutrition services, and overall care coordination as a part of a comprehensive array of services. Despite limited funds this past year, we:

  • Offered a state-wide conference (on Zoom) that focused on early identification and treatment of the young adult, and was attended by close to 400 school counselors, coaches, dieticians and others who come into contact with this population.
  • Completed our online educational program, the 6-module preparED which was made available free of charge to students in a range of health professions.
  • Continued to grow Project ECHO  and its school-based as well as provider-focused remote learning and supervision.
  • Maintained our triage and referral lines that handle thousands of calls (Of note, NEDA reported an increase of 70% calls to their hotline).

Everyone we met was extremely supportive of our efforts. While we await the final decision about restoring the funds needed to continue our work, we welcome ongoing support from our readers. Feel free to remind your local representatives that their support is crucial. To find your local representative, search the State Senate and Assembly listings.

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