We sit around large conference tables or in intimate offices. The stories never get old: families going into debt to pay for treatment for their child; parents relocating to a different part of the state for a loved one to receive care; multiple appeals to insurance companies to pay for treatment. And of course, stories about individuals who received care-and recovered- because of the ability to access the level of care they needed thanks to coordinated, comprehensive and continuous care they received from the Comprehensive Care Centers for Eating Disorders (CCCED).
Designated a Center of Excellence by the State of New York when first funded in 2005, its existence is nonetheless in jeopardy each year, which necessitates that each year a group of providers, former patients, and parents of patients representing CCCED travel to Albany to advocate for continued funding for our programs. We come from the Rochester region (Western CCCED), Albany area (Northeast CCCED) and NY City (Metropolitan CCCED). Each regional program consists of several local providers in that region as well. The day is spent in back to back meetings with legislators (or their designees) who may be able to influence the allocation of this year’s budget.
The Capitol abounds with people on lobbying days, when legislators are in their Albany offices. The elevators and hallways are jammed with people representing a large range of causes from cancer, to disabilities, to education. We crisscross with a broad cross section or people, young and old and in between, as we go through security checkpoints multiple times to get to our meetings in the legislative, capitol and adjacent buildings.
We meet with members from “across the aisle” who represent our districts as well as serve on key committees; we remind them of the original funding granted to create the Centers, what it has dwindled to (along with corresponding services), and we ask to maintain, at a minimum, but to consider fully restoring more generous funding. We bring letters, budgets and rationale for our requests. But it’s the people, not the paper, that remind them what is really important.
Funding for the CCCEDs allows each region to offer services that are not covered by insurance. These initiatives include funding for case managers, parent peer mentors, education, outreach, and referral services. We remind them of areas of the state that are not well served, and how critical it is to provide outreach and training in those areas. Our goal is to provide residents of New York access to all levels of care so that they can stay in state for treatment.
We have our champions. Assemblyman Felix Ortiz has been outspoken on our behalf for many years, and writes letters to increase funding on our behalf to his colleagues. Senator Kemp Hannon always makes time for us, and he and his able staff help guide us in our efforts (and pause for photo opportunities too!). No one disputes our mission, but can they convince colleagues and the Governor to allocate those dollars for us?
We will continue to do all we can. If you’d like to join us, consider writing your state Representative today. You can find the list of current New York Representatives here, and can search for your local State Assembly member by putting in your New York state address here.