Advocacy Resource Network Summary

Developmental Disabilities Planning Council
Advocacy Resource Network


In October of 2004, DDPC sponsored the Family Resource Network Summit which brought together parents, advocacy service providers, and representatives from State agencies to:
1) Identify advocacy services and resources that exist around the state;
2) Identify the gaps that exist in these services and supports; and to
3) Facilitate discussion about ways to establish an infrastructure to coordinate advocacy activities including providing training, technical assistance, support, and opportunities for the exchange of information between parents and professionals.

Previous DDPC initiatives show that a number of advocacy resources exist in New York, but that these resources function in a patchwork fashion. In general, there is a lack of coordination and connection between the advocacy groups and organizations providing support and assistance to individuals with disabilities and families. The Summit confirmed previous DDPC findings that the current advocacy service system is overwhelmed and ill-equipped to address the ongoing advocacy needs across the State.

The Summit supported the fact that advocacy groups and providers do not have a systemic method for disseminating information, communicating, collaborating, providing training, technical assistance, or other needed supports. The outcome of the Summit was the development of a business plan to facilitate the formation of an independent, nongovernmental, membership association that would advocate for the needs of advocacy organizations delivering services to individuals with disabilities and families. The proposed Association would among other tasks:
a) Develop a clearinghouse of information offering disability information, resources, and referral, via a statewide database of resources.
b) Provide outreach mechanisms and resources for families and professionals to navigate and connect with service systems.
c) Provide mechanisms to convene families and providers and build capacities through technical assistance and events such as a leadership conference.
d) The Association would take on a policy function and coordinate advocacy education and policy activities

Proposed Project Approach:

DDPC funds would be used to support activities to develop the self-sustaining Association and efforts to build a statewide network. Initial efforts will focus on the development of the Association structure. Proposed activities to create the statewide network include:

a) Developing the funding streams and means for a self-sustaining advocacy Association.
b) Developing a list serve, interactive website, and other electronic information systems for groups to communicate and share information.
c) Developing a database of disability information and resources. Specific efforts would be made to link with existing advocacy databases and resources.
d) Developing parent resources to assist parents to seek appropriate information and supports.
e) Developing outreach mechanisms to recruit members to the Association.

Once the infrastructure of the Association is established, activities in Year two and three would include
a) Assessing the quality of existing services
b) Establishing standards for advocacy training
c) Sponsoring advocacy leadership and capacity building opportunities
d) Supporting ongoing effort to improve outreach, communication, and information sharing methods between advocacy groups.
e) Continued efforts to create a financially self-sustaining network.

Expected Outcomes:

� A self sustaining entity will be established that will provide more cohesive information sharing, coordination, and communication between advocacy providers and families across the state.
� A repository of information will be established for individuals with disabilities, families, and professionals across the state.
� The proposed Association will strengthen existing advocacy service systems by providing information, technical assistance, training, coordination of activities as well as offer �one voice� for advocacy education and policy within the state.

Robin H. Worobey
Program Planner
NYS Developmental Disabilities Planning Council
155 Washington Avenue , 2nd Floor
Albany , NY 12210
518-486-7505, 518-402-3505 (fax)