Our ride to Albany last week was long, but the mission important: to meet with legislators to advocate for the continued funding of the Comprehensive Care Centers for Eating Disorders (CCCEDs). In 2004, New York State passed a law to create and fund this statewide network in order to enhance comprehensive, coordinated and continuous specialized treatment for eating disorders, as well as to facilitate early intervention for those in need to avoid complications and repeated hospitalizations .
The three regional centers (WesternNY, NortheastNY, and MetroNY) cover all of New York State and are considered models of care. Here in New York City, the Metropolitan CCCED is comprised of the New York State Psychiatric Institute, NewYork-Presbyterian Hospital, and Cohen Children’s Hospital.
The funding we have received over the years covers services that are not reimbursed by insurance. Like all state services, we are subject to budget cuts. In spite of recent reductions in funding, we have continued to work hard to maintain the program and to stretch our dollars to make the funding meaningful.
In this spirit, this week a team of leaders from across the state, representing the three designated centers, were joined by some of the patients and families who have been helped by their services. Our goal was to remind our representatives why continued funding for these programs is critical.
The day involved back-to-back meetings with representatives from the Department of Health, as well as Senate and Assembly members who chair relevant committees (health and mental health, for example). These representatives have some discretion over how allotted funds may be distributed, and it was our mission to help them see that money spent on eating disorders treatment in New York State is money well spent.
Of course, we brought handouts and reminded them of our services. But most importantly, we were accompanied by patient and family volunteer advocates who courageously shared the details of their journey with these illnesses in the service of helping others. Their stories were compelling:
- Cheryl talked about her long term struggle, 36 years in fact, with her eating disorder. She described years in and out of treatment centers, until two years ago, when she began a treatment that has finally helped her achieve symptom recovery. What has made the difference? According to Cheryl, the caseworker and life coaching services that she received following her treatment at The Healing Connection in Rochester, all part of the Western NY CCCED program’s network, has been critical. For the first time in her life, Cheryl is functioning in her community and giving back by working as a peer leader while keeping her eating disorder at bay. At 52 years old, she is a reminder that even with a “chronic” course of illness, proper support services can help an individual stay out of the hospital and become engaged community members.
- SP described needing to move out of town because her insurer would not pay for treatment for her 14 year old daughter struggling with anorexia nervosa. Due to the complex interaction of medical and psychological issues that arise with eating disorders, SP has had to fight to get appropriate care (and coverage) for her daughter. Northeast’s Comprehensive Care Center for Eating Disorders in Albany has been the lifeline for which the family was desperately looking.
- AM is 17 years old and doing well, having received treatment early. Her family spoke about the support and education about eating disorder treatment and the process of recovery that they received from the Western and Northeastern centers. This support facilitated the family’s ability to assume, as needed, roles at home similar to those of a hospital team.
These are just a few of the many stories behind the statistics. And these stories together with the statistics are the very reasons we go to speak with our government’s officials. We go to remind the decision-makers of the valuable work that can be done with the dollars they commit to eating disorders treatment.
I am happy to report that we were met with very positive and encouraging responses. We are hopeful that the funding for the CCCED will be maintained in this year’s upcoming budget. The trip was a great reminder that anyone can join the efforts to advocate for eating disorders by contacting their local state representatives. Together, our efforts are making a difference.