irs program accomplishments · form 990 part iii · fy2023
What they reported doing
- #1 primary $145KProgram services - Membership related services include coordination of experts on topics relevant to the membership categories such as agencies, direct support professionals, individuals, families, vendors and suppliers to these groups; holding meetings and sending out communications via email, mail or by phone to participants of various committees; and undertaking activities that further support the needs of these groups as they are identified. The DDAWNY program services are supported by membership dues.
named programs · 4 · from sources
What they call their work
Advocacy and Legislative Action
Represents member agencies in state and federal policy discussions, including budget advocacy and regulatory input through the Government Affairs Committee and partnership with New York Disability Advocates.
Committee Networks
Facilitates collaboration through specialized committees including Housing, Financial Management, Government Affairs, Self-Direction, and Workforce Development to address system-wide issues and share best practices.
Guide to Services
Publishes the annual "Guide to Services" to help individuals, families, and school personnel navigate available supports for people with developmental disabilities in the region.
Training and Educational Offerings
Provides professional development through the WNY Training Consortium and specialized committee meetings for staff across member agencies.
activities · 10 groups
What they do
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Disability Rights Advocacy & Self-Advocacy Empowerment 2 activities
- Advocates for legislative and policy changes at state and federal levelsEngages in advocacy efforts through the Government Affairs Committee, representing member agencies before elected officials and participating in statewide coalitions to advance public policy and equitable funding for individuals with developmental disabilities.
- Supports statewide planning and policy engagementEncourages participation in OPWDD's Future Planning Forums and collaborates with state-level organizations to strengthen services and supports for individuals with intellectual and developmental disabilities.
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Developmental Disability Service Coordination 2 activities
- Produces guide to services for individuals with developmental disabilitiesDevelops and publishes the Guide to Services, a resource that assists individuals, families, and school personnel in accessing supports for people with developmental disabilities across Region 1 counties; the 2026 edition is planned for distribution.
- Provides training and resources on self-directed servicesOffers informational resources, guidance, and support to individuals considering or receiving self-directed services for developmental disabilities.
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Regular Membership Meetings 1 activity
- Convenes membership and committee meetings for information sharing and networkingOrganizes regular meetings, including the annual Summer Membership Meeting and gatherings for executive directors and committee chairs, to share updates, network, and discuss issues affecting developmental disability services.
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Community CPR and First Aid Training 1 activity
- Delivers annual choking prevention trainingProvides annual choking prevention training through the Statewide Learning Management System to support safety and compliance in developmental disability services.
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Organizational Governance & Leadership Development 1 activity
- Facilitates inter-agency collaboration and quality improvement through committeesHosts and supports committees and subcommittees—including the Facilities Committee and quality-focused groups—that enable collaboration, problem-solving, training, and sharing of best practices among member agencies.
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Policy Advocacy & Research 1 activity
- Organizes advocacy events and stakeholder engagement initiativesHosts events such as DD Day, Candidate’s Hour, and the Legislative Engagement Challenge to connect members with policymakers; also organizes briefings with federal officials and policy experts to inform advocacy strategies.
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Organizational Newsletter Production and Distribution 1 activity
- Produces and distributes Member UpdatesPublishes regular Member Updates that highlight member accomplishments, report on DDAWNY activities, summarize legislative changes, and share funding opportunities.
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Nonprofit Capacity Building Services 1 activity
- Provides letters of support for program development and expansionIssues letters of support to member agencies developing new or expanded programs, particularly those promoting inter-member collaboration in service delivery for people with developmental disabilities.
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Professional Education and Certification for Financial and Estate Planners 1 activity
- Shares compliance tools, guidance, and educational resourcesDisseminates tools, compliance information, and expert-led education on regulatory topics such as HIPAA, OMIG regulations, and privacy rules to enhance knowledge and adherence across member agencies.
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Uncategorized 2 activities
- Coordinates membership services and communication for I/DD provider networkProvides ongoing coordination and support to member agencies, direct support professionals, individuals, families, and vendors in the I/DD field by convening committee meetings, facilitating communication, and offering expert consultation.
- Publishes administrative memoranda to guide policy and practiceDevelops and issues administrative memoranda such as ADM #2023-04 on choking prevention and ADM 24-ADM-01 on medical immobilization/protective stabilization to define standards and regulatory expectations for I/DD service providers.
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financials · form 990 · fy2025
revenue
Total revenue$278K
Contributions & grants$4K2%
Program service revenue$271K97%
Investment income$1K0%
Other revenue$2K
expenses
Total expenses$214K
Program expenses70%
Admin / overhead30%
Fundraising0%
Salaries & benefits$53K
Grants paid out$0
Largest expense lineProfessional Fees
balance sheet
Total assets$345K
Cash$338K
Investments$0
Liabilities$8K
Net assets$337K
Liquid reserves19.0 mo
6 years on record · 2020–2025 · YoY revenue +4.9%
leadership · form 990 part vii · fy2025
Who runs it
board members · 13
- ALICIA FELLOWS — MEMBER AT LARGE
- ANNE MCCAFFREY — MEMBER
- ANNE SPISIAK — VICE PRESIDENT
- BARB DELONG — MEMBER
- BRYAN O'DONOVAN — MEMBER
- DENISE JONES — MEMBER
- DONNA DEDEE — MEMBER
- DOUG DIGESARE — MEMBER
- JEFF PATERSON — TREASURER
- KATHY BUNCE — MEMBER
- MINDY CERVONI — PRESIDENT
- RENEE FILIP — SECRETARY
- SHANELL DAVIS — MEMBER
relationships · 17
Who they work with
- Congressman Joseph Morelle Government — Hosts member meetings with Congressman Joseph Morelle to discuss issues related to developmental disabilities.
- DDSO Partner — Collaborates with DDSO by including its presenters in committee discussions on quality and regulatory trends.
- DDSO Partner — Provides presenters for quarterly committee meetings focused on quality improvement.
- DQA Partner — Collaborates with DQA by including its presenters in committee discussions on quality and regulatory trends.
- DQA Partner — Provides presenters for quarterly committee meetings focused on quality improvement.
- Government Affairs Committee Partner — Committee composed of DDAWNY members that brings issues to elected officials at local, state, and federal levels.
- NY Disability Advocates Partner — Collaborates with DDAWNY to advance advocacy and strengthen services for people with intellectual and developmental disabilities in New York State.
- NYDA Partner — Co-develops and shares budget advocacy materials related to services for individuals with developmental disabilities in New York State.
- NYHRC Partner — References NYHRC resources related to housing rights for individuals with developmental disabilities.
- New York Disability Advocates Coalition — Statewide coalition of provider associations advancing public policy for individuals with intellectual and developmental disabilities
- New York Disability Advocates Network — DDAWNY is a member of NYDA, a statewide coalition that advances policies to strengthen services for people with intellectual and developmental disabilities.
- New York Disability Advocates Network — Member organization participating in NYDA's Legislative Engagement Challenge.
- New York State Office for People With Developmental Disabilities Government — Collaborates with OPWDD by encouraging participation in its strategic planning forums.
- OPWDD Government — Collaborates with OPWDD on administrative memoranda, self-direction guidance, and training initiatives.
- Sachs Policy Group Partner — Collaborates with Sachs Policy Group for federal policy updates.
- Tom Augustynek Partner — Co-Chair of the Facilities Committee
- agencies in the I/DD field Network — Membership-based network of provider agencies working in the intellectual and developmental disabilities field.
strategies · 4
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Collaborative Network Model for Collective Impactmethodology: collaborative_network_modelBy fostering collaboration among member agencies to align strategies and share risks, DDAWNY improves services and outcomes for people with developmental disabilities because collective action strengthens systemic advocacy, quality improvement, and resource responsiveness.
- Data-Informed Systemic Advocacymethodology: data-driven advocacyBy combining data analysis with direct legislative engagement and site visits, DDAWNY strengthens policy advocacy because empirical evidence paired with firsthand experience fosters legislative understanding and drives sustainable provider and system-level change.
- Individual Self-Direction in Support Servicesmethodology: self-directionBy promoting self-direction and individual-directed services, DDAWNY empowers people with developmental disabilities to manage their own supports because personalized control increases autonomy, dignity, and alignment with individual needs.
- Member-Led Collaborative Advocacymethodology: member-led committeesBy using member-led committees and peer collaboration networks, DDAWNY advances advocacy and program development because shared expertise and collective problem-solving enhance responsiveness and ownership in shaping services and policy.