Accessing and navigating the system and services available to New Yorkers with intellectual and developmental disabilities (I/DD) is perhaps the hardest thing families will ever have to face.

In part, it’s the ongoing nature of the job: Families and caregivers have to tackle early intervention, special education and all that entails, how to navigate Medicaid and the HCBS waiver, how to find appropriate therapies and doctors, and how to deal with the transition “cliff” that happens when people with I/DD leave school and enter the “real” world and contend with how they’ll live the rest of their lives, from housing and caregiving to secondary education and employment.

It’s also due to just how complicated, confusing and changeable the delivery system of supports are not just in New York, but nationwide.

If you’re overwhelmed and looking for some clarity, you’ll find at least some of your answers through the robust number of agencies and organizations, mostly nonprofits, that offer webinars, workshops, resource fairs and more tailored to help you understand what you need to do and how to do it.

The Boost posts many of these events in its weekly resource list, but to include them all is a nearly impossible task. Which is why we’ve put together this list of the 20 organizations that consistently appear in our round-up.

We encourage you to check out all calendar links for a better idea of what’s on offer.

If you’re an agency or organization that would like to see your name added to the list, please contact The Boost at fromtheboost@gmail.com, or via the contact page.

ADVOCATES FOR CHILDREN (AFC) OF NY

• About: AFC’s staff of attorneys, advocates and education specialists help families by providing free legal and advocacy services for children including those with developmental disabilities. Services include representation at school-related hearings and appeals, and teaching families what they need to know to stand up for their children’s educational rights.
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AHRC NYC

• About: A family governed organization, it provides supports to people with I/DD and their families, calls for change in legislation and public policy, and advocates for better education, living arrangements, prospects for work and fuller lives in the community.
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CENTER FOR PARENT INFORMATION & RESOURCES

• About: This is the central “Hub” for the network of Parent Centers serving families of children with disabilities nationwide. You can find them all here. Some are included separately on this list.
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COMMUNITY INCLUSION & DEVELOPMENT ALLIANCE (CIDA)

• About: An alliance of families and community partners based in Bayside, N.Y., that aims to increase equity and inclusion opportunities for children and families with exceptional needs including disabilities. Provides parent training and support, advocacy, inclusive community programs and workforce development projects.
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COMMUNITY SUPPORT NETWORK (CSN)

• About: CSN at Westchester Institute for Human Development in Valhalla, N.Y., is a resource for individuals with disabilities, their families, and the professionals supporting them.
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DISABILITY RIGHTS NEW YORK (DRNY)

• About: Part of a nationwide network of legally based disability rights agencies mandated by federal law to protect and advocate for individuals with disabilities. its free legal and advocacy services work to protect and advance the rights of children and adults with disabilities.
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INCLUDE NYC

• About: Located in New York City, this organization works to empower families of children and youth with disabilities ages birth through 26 with the knowledge and skills to access and navigate systems and services.
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LONG ISLAND ADVOCACY CENTER, NASSAU COUNTY

• About: A group based in New Hyde Park, N.Y., committed to protecting the rights of students and individuals with disabilities.
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NEW YORK ALLIANCE FOR INCLUSION & INNOVATION

• About: An Albany-based resource for organizations and individuals with disabilities, its mission is to fuel positive system change and innovation. The goal: To advance a society where individuals with disabilities are contributing citizens with equal rights and opportunities.
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NEW YORK ASSOCIATION ON INDEPENDENT LIVING

• About: A non-government membership organization that promotes the independent living and rights of New Yorkers with disabilities created by, and composed of, Independent Living Centers (ILCs) throughout New York.
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NEW YORK HOUSING RESOURCE CENTER (HRC) FOR PEOPLE WITH I/DD

• About: The HRC provides all housing stakeholders with technical assistance on housing matters and community training for people with I/DD and their families.
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NEW YORK STATE EDUCATION DEPT. OFFICE OF SPECIAL ED EDUCATIONAL PARTNERSHIP

• About: Its mission is to support and empower educational organizations, families, and communities to improve equity, access, opportunities and outcomes for all students with disabilities in New York State.
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THE NEW YORK STATE PARENT NETWORK

• About: ​This is a coordinated group of organizations that provide support and information for parents of children with disabilities via a delivery system throughout New York State. It consists of many organizations so see the list here. Some have been included separately on this list.
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PARENT NETWORK OF WESTERN NEW YORK

• About: This organization provides one-on-one support and education for people with I/DD from birth through adulthood as well as for professionals. It does so through resources, workshops and support groups. The majority of its staff and board members are parents of children with disabilities,
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PARENT TO PARENT OF NYS

• About: A statewide organization that supports and connects families of individuals with I/DD to reduce isolation and empower caregivers to navigate and influence service systems. It has several offices staffed by Regional Coordinators who are parents or close relatives of individuals with special needs.
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SINERGIA

• About: Provides residential services to people with I/DD in the five boroughs of New York City.
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SOYAN

• About: Supporting Our Youth and Adult Network is a network of volunteer family members, professionals and self-advocate individuals sharing information and supporting person-centered services offered by the Office for People with Developmental Disabilities’ (OPWDD) self-direction model of service delivery.
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STARBRIDGE

• About: A federally-funded Parent Training and Information Center (PTIC) in Rochester, N.Y., serving all of New York State except the five boroughs of New York City and Long Island.
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UNITED WE STAND OF NEW YORK

• About: A community-based parent support program that serves culturally and linguistically diverse (CLD) families who have children, youth/young adults with disabilities throughout Brooklyn, the Bronx, Queens and Harlem (Manhattan). Directed and staffed by parents.
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WESTCHESTER INDEPENDENT LIVING CENTER

• About: A peer-driven, community-based organization that empowers people with disabilities to lead self-directed lives in the community through advocacy, training and referral to resources that promote independent living.
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