(As Presented at the November 11th, 2014 DD Council Meeting: See Council Minutes for discussion that followed.)
The Councils were born during the Lindsay administration, a time of Little City Halls and Community Boards. As a counterpart to the Community Services Board, an advisory body consisting entirely of appointed individuals, a fellow who had previously worked in Connecticut brought the concept of grass-roots advisory body to the City Department of Mental Hygiene, headed by Dr. June Christmas. Some people in our area of mental retardation (aka intellectual disabilities), liking the idea but feeling left out, lobbied for a separate department; they wanted to be included in the advisory bodies but not be subsumed by them. Following an old-fashioned sit-in at the City Department of Mental Hygiene, both the Office of Mental Health and the Office of Mental Retardation were formed within the Department. Each Office had its own advisory body and these were designed from the bottom up: each borough was divvied up into regions—Manhattan had three—and each region was represented by a council made up of a 50-50 mix of providers and consumers. There were borough councils (made up of the regional councils) and citywide councils (made up of the borough councils), and whenever the citywide councils of both mental health services and mental retardation got together, they formed the grand-daddy of them all: Federation. The borough chairs still meet quarterly as part of Federation.
When first formed, each borough drew up a set of by-laws based on the template of the ones being used by the mental health people, and within each borough a number of regions formed and had similar but individualized by-laws. The first chair of upper Manhattan Region III was Geneva Bridges. The big difference between ourselves and our mental health counterparts was over the definitions of providers and consumers: in both MH and MR providers were those whose family incomes consisted of at least 10% from the provision of services; for MH the consumer was anyone receiving services; MR included family members. The individual boroughs’ by-laws haven’t changed much over the years, so there’s a lot of hints of their origins. Manhattan’s first chair was Dr. Betty Simons. Under Ed Koch, the City department expanded to include the Office of Alcoholism and Substance Abuse. Their structure was to be the same, but they never fully achieved it.
The councils were extremely vibrant for their first ten years. Since they embodied the concept of regional representation, that format was used in developing the IAC structure out of which the majority of board members were and are borough or county representatives.
Changes in the City’s focus came about in the early 1970s as the State took over a commanding position in the delivery of services after the Willowbrook response. OMRDD was formed, and advocacy grew. Like the City, the State needed an advisory body, and councils were ready-made and seamlessly adopted. The councils became unofficial advisory bodies.
In the 1970s the State and the few voluntary providers were tapped to get people out of Willowbrook. Deinstitutionalization was a joint effort with the voluntaries. The provider coalition grew and eventually became IAC in 1978. IAC was looking for geographical equity: two representatives from each borough and an equal number of elected people. IAC is a provider agency. The councils are made up of providers, families, individuals, and government coming together. IAC and council priorities often agree, and if not, get resolved. Currently, IAC has quarterly meetings with representatives from the borough councils regarding legislative issues.
The City played a major funding role in de-institutionalization. As the State grew stronger, the City gave up some of its responsibilities. At its peak the city had roughly $30 million in DD services. Now city tax levy is down to $3 million.
Borough councils do not exist elsewhere in the State. The role of the councils with OPWDD has fluctuated. For example, councils used to review every proposal, but no longer.