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  5. RFK UCEDD Supports Local DD Council NYS and NYC Local Legislative Education Efforts

RFK UCEDD Supports Local DD Council NYS and NYC Local Legislative Education Efforts

April 7, 2017

On Friday, March 3, 2017 over 350 family members, government officials, legislators and community agencies participated in the Bronx Developmental Disabilities (DD) Council's Annual Legislative Education Breakfast under the leadership of Joanne Siegel, Associate Director of the Rose F Kennedy Center University Center for Excellence in Developmental Disabilities (RFK UCEDD) at Albert Einstein College of Medicine/Montefiore Medical Center who currently serves as the President of the Council.
The purpose of this event was to bring together legislators, parents, advocates, consumers and professionals concerned with the needs of people with developmental disabilities who reside in the Bronx. In order to address the needs of all of New York City, this event was also simultaneously planned throughout all of the 5 New York City boroughs.

This year the Breakfast was co-hosted by the NYS Senator Jeffrey Klein, NYS Assemblyman Jeffrey Dinowitz, New York State Senator Gustavo Rivera, New York City Council Member Andrew Cohen and Bronx Borough President Ruben Diaz, Jr. In addition, the breakfast included Bronx representatives to the United States Congress including Joseph Crowley, Eliot Engel and Jose Serrano as well as the Mayor's Office for People with Disabilities. Also in attendance were NYS Assembly Members Michael Bennedetto, Carmen Arroyo, Luis Sepulveda, Michael Blake, Victor Pichardo, and Mark Gjonaj.

Family members, self-advocates and providers gathered in this forum with Bronx Legislators to address concerns about services for Individuals with Developmental Disabilities and provide information, discuss issues and advocate for a reduction in the social and economic barriers that affect the quality of life for children and adults with developmental disabilities. Three legislative position papers were presented.

Topics discussed included the need for a living wage for Direct Support Professionals (DSPs) who provide daily "hands on" care to people with developmental disabilities who live at home or residential programs, as well as day programs and other supportive services. These direct care workers keep individuals safe and healthy in their communities. They help with hygiene, medication administration and basic adult daily living skills.

Another concern raised was Housing, particularly accessible housing, and the urgent need for Housing and Residential Development for individuals with developmental disabilities. Statewide there are some 11,000 individuals seeking some form of supportive housing. Of particular concern is the fact that many individuals with developmental and intellectual disabilities are aging or living with older parents who need supports in order to avoid nursing home or more restrictive types of living arrangements.
Discussion also focused on Early Intervention and Special Education services for children under 5 years of age with developmental delays, since many pre-school and early intervention programs have closed or cut back on services due to chronic underfunding of these programs for the past ten years.
Lastly, Health Services are at a critical crossroad and Article 16 Clinics, like the Rose F Kennedy Children's Evaluation and Rehabilitation Center (RFK CERC) at Montefiore are a safety net and protect the special health care needs of children and adults by providing evaluations and treatments they can't get anywhere else. In addition securing Durable Medical Equipment (DME) such as braces, wheelchairs and medical supplies for children and adults with DD remains an area of concern due to budgetary constraints and a long history of underfunding.

Attendees at the breakfast were moved by the inspiring personal presentations of the participants, many of whom have received services at the RFK CERC for decades. (See video on www.bronxddcouncil.org). The Bronx legislators were extremely supportive of the concerns and issues that were raised and promised to work with the Bronx Developmental Disabilities Council and the RFK UCEDD to continue its efforts on behalf of this vulnerable population as they prepare the NYS budget for FY18.