Family Resources

Welcome

Welcome to the Office for People With Developmental Disabilities Family Resources page. This page is for family members and other important people in a person’s life - such as friends, foster parents, and legal or personal representatives - who help support and advocate for them.

Supporting and being an advocate for a person with a developmental disability is meaningful but can be challenging.

Advocacy can look different in different situations. Sometimes it means speaking up on someone's behalf. Other times it means standing beside them, helping them speak for themselves, or supporting the way they communicate. It means learning about their rights, helping them share what they want for their life and working with others to make sure their needs and choices are respected. Advocating for someone you care about can be tiring and stressful, but it can also be meaningful and rewarding. You do not have to do this alone. Our goal is to work with you so that your experience with our system is as clear and supportive as possible.

This page was requested by you and designed for you. We worked with family advocates who have experience supporting their own loved ones and navigating New York State’s system of supports and services. Together we created this page to give you: 

  • A brief overview of information many families and supporters look for
  • Easy to find links to more detailed resources and support. 

 We want your experience with our system to be as seamless as possible.

We look forward to being a partner with you in helping your loved one live an inclusive and independent life of their choosing.

 

Understanding the OPWDD System

Taking the first steps toward services

STEP 1. Contact OPWDD’s “Front Door”

At OPWDD, your very first step to receiving services is to start at the Front Door to receive basic information about OPWDD, what services we can provide, and who is eligible to receive those supports.  You can contact the Front Door by calling 1-866-946-9733 (or for NY Relay Services dial 711) and letting them know you want to apply for services.

Be sure to tell the operator what county you live in so they can connect you with the correct OPWDD Regional Office.

Watch our Front Door Introductory Videos that walk you through what you can expect from the process.

STEP 2. Find a Care Manager

Once you connect with the Front Door team at our Regional Office, they will refer you to identify a Care Coordination Organization in your area so that you can be assigned a Care Manager. A Care Manager's role is to help you identify what types of services are right for you and to help you navigate the eligibility process.                  

Learn about the Role of a Care Manager and Where to Find One.

STEP 3. Pursue Eligibility

Before you can access most OPWDD supports and services, you will need to qualify for them by proving you have a developmental disability and meeting eligibility requirements for Medicaid HCBS Waiver services through an evaluation of your level of need.  

Learn about the Eligibility Review Process. The OPWDD Front Door team in your regional office will help you.

STEP 4. Get an Assessment

Once a person is determined eligible to receive OPWDD services, an assessment is needed to help identify their strengths, needs, and available supports. OPWDD currently uses three tools when assessing service needs: Developmental Disabilities Profile (DDP-2), Child and Adolescent Needs and Strengths (CANS), and the Coordinated Assessment System (CAS). Learn about Assessments

STEP 5. Work With Your Care Manager on Your Life Plan

The Life Plan is a document that outlines a person's goals, desired outcomes, and their clinical and support needs. The document changes as the person's needs and wants change. 

Learn about the Life Plan and what it means.

STEP 6. Plan your services

After meeting with your Care Manager and completing your Life Plan, it is time to plan your services. You may find that you need a single service or a combination of several services.  Learn about the types of services OPWDD offers.

 

 

Know Your Loved One's Rights and How to Advocate

Know Your Rights

Everyone has the same rights protected by the United States and New York State Constitutions. Additional rights exist in New York State laws and regulations about the services and supports that people with developmental disabilities receive.  Some of your rights include the right to vote, the right to participate in your community, and more.

KNOW YOUR RIGHTS

Get Help Preserving Your Rights

OPWDD has an Office of Advocacy. Within this office has a Advocacy and Peer Support Unit which is staffed with Peer Specialists and an individual and family advocate. These advocates are people with lived experience. Our advocates can:

  • Help you and your loved one understand your rights
  • Support you to prepare for meetings and speak up about concerns
  • Refer you to more support

If you feel you need more help to understand or protect your rights, the organization's listed below may also be able to help. These groups are independent from OPWDD and can offer additional information and advocacy support.

If you feel like you need additional assistance to preserve your rights, the below organizations may help.

Independent Intellectual and Developmental Disabilities Ombudsprogram (IDDO) 
The independent Developmental and Developmental Disabilities Ombudsman Program is here to support people with developmental disabilities and their families when they have questions or concerns about services. IDDO provides independent, conflict free help to explain options, address problems, and protect people's rights as they navigate OPWDD programs and services.

IDDO is required by New York State law and is operated by Community Service Society of New York (CSSNY) not by OPWDD. The means they offer support that is independent from OPWDD. CSSNY operates IDDO.

Center for Disability Rights The Center for Disability Rights, Inc. (CDR) is a not-for-profit, community-based advocacy and service organization serving people with all types of disabilities.

Disability Rights New York (DRNY) is New York State’s Protection and Advocacy system. They are independent and help people with disabilities protect their legal and civil rights. They can help you file a complaint, represent you in legal matters and advocate for equal access, safety, and inclusion.

The Mental Hygiene Legal Service (MHLS) provides legal services, advice and assistance to people receiving care in certified settings.  To reach an MHLS attorney, please review the 1750-b MHLS contact list by county. Many MHLS attorneys are willing to respond to end-of-life matters after hours and on weekends on a voluntary basis.

NYS Justice Center for the Protection of People with Special Needs: The Justice Center’s Individual and Family Support Unit provides resources and support for people receiving OPWDD services and their families. 

Learn More about the Federal Laws That Protect Your Loved Ones

The Rehabilitation Act of 1973

The Individuals With Disabilities Education Act

The Americans with Disabilities Act of 1990

Learn More about New York State Laws that Protect Your Loved Ones

There are several New York State laws in place to protect your loved ones and to help you protect your loved ones if they need some assistance in making decisions about their life. There are also important regulatory protections under the State Mental Hygiene Law.

Supported Decision Making is a less restrictive alternative to guardianship and starts with the belief that everyone has the right to make decisions. Supported Decision Making New York believes that every person has the right to make their own decisions and to have those decisions legally recognized.

Guardianship is a legal arrangement where a court gives a person or organization the legal right to make decisions for another person who is unable to make all or only certain decisions for themselves. Learn more about How to Start a Guardianship Case in New York State

The State Mental Health Confidentiality Law (MHL §33.13; MHL §33.16) Under the Mental Hygiene Law, clinical information maintained by a facility certified or operated by OPWDD or the Office of Mental Health (OMH) may only be disclosed without the person’s consent pursuant to the provisions of §33.13.

State Public Health Confidentiality Law Article 27F.
This law requires written authorization from the person before a health care provider may disclose information to a third party, unless it is pursuant to a court order, for law enforcement purposes, fraud and abuse investigations, or otherwise authorized by law. 

 

Family Groups

Some families find it helpful to become involved in groups where they can meet and get to know other people who have loved ones with developmental disabilities. Groups can be a valuable way to share information and resources, as well as provide support to one another.   

There are many regional family support groups that offer parents an opportunity to interact with, learn from, and advocate with families who also have a family member with a developmental disability. Below is a non-exhaustive list of current groups with a general description of their membership and information about how to get in contact with them.

NYC Family Advocacy Information Resource (NYC FAIR)
NYC Fair is a resource for families dedicated to creating a network of informed and empowered family members and friends who can be effective advocates for people with intellectual and developmental disabilities. 

New York Alliance for Developmental Disabilities
NYADD’s stated purpose is to serve as a state-wide (NY) connection point and information exchange forum for those who wish to advocate for the rights and well-being of those with developmental disabilities and special needs. 

State-Wide Family Advocacy Network of New York State (SWAN)
SWAN of NYS is dedicated to advocating for people with intellectual and developmental disabilities. This independent coalition of families and guardians of people with developmental disabilities states that their lifelong commitment is caring for their loved ones. 

Developmental Disabilities Alliance of Western NY (DDAWNY)
The Developmental Disabilities Alliance of Western New York is a collaborative group of member voluntary agencies that provide services to people with developmental disabilities. The Alliance states that it seeks to honor individual agency missions while also assisting agencies to develop relationships, promote unified strategies and share risks for the mutual gain with and for the benefit of people with developmental disabilities.

Chinese American Planning Council
Founded in 1965, the Chinese American Planning Council (CPC) is a social services organization dedicated to creating social change and serving the Chinese American community. CPC advances the social and economic progress of immigrant and low-income communities of New York through services, resources, and advocacy.

Sinergia
Sinergia offers many opportunities to get involved in their advocacy work to preserve and improve services for people with disabilities, especially those from culturally and linguistically diverse communities in New York City. They seek to make sure high-quality, culturally appropriate services are available to all, without barriers of race, ethnicity, language or class.

Autism Society ​Habilitation ​Organization (ASHO
ASHO is dedicated to people and their families with intellectual or developmental Disabilities and Autism Spectrum Disorder (ASD) who are members of the South Asian- American, Bangladeshi-American community. 

Nonprofit Advocacy Groups

National Down Syndrome Society
The NDSS's mission is to create a world where individuals with Down syndrome thrive.

Autism Society of America
Since 1965, the Autism Society of America and its affiliate network have connected people to the resources they need through education, advocacy, resources, and community programming. They create connections, empowering everyone in the Autism community with the resources needed to live fully.

The Epilepsy Foundation
The Epilepsy Foundation is a national nonprofit organization dedicated to improving the lives of people affected by epilepsy through education, advocacy, research, and connection. One of their primary goals is to provide accessible, current information about epilepsy/seizure disorders to people with epilepsy, parents, family members, and friends.

Cerebral Palsy Association of NYS
CP State is a broad-based, multi-service organization encompassing nearly 30 Affiliates and 19,000 employees providing services and programs for more than 100,000 people with cerebral palsy and developmental disabilities, as well as resources for families

Tourette Syndrome Association of Greater New York State
The Tourette Association of America, Greater New York Chapter, is a volunteer-led, nonprofit organization that supports the needs of people and families affected by Tourette Syndrome and Tic Disorders. 
 

Do you know of a helpful resource that you think would assist families new to services that should be included on this page? Contact us  

PLEASE NOTE: The resources listed on this page are for your information only. Inclusion or non-inclusion on this list neither suggests endorsement nor non-endorsement. 

 

 

 

Family Advocacy Resources & Organizations

While the below organizations are independent of OPWDD, they have been key partners and have been helpful to many people receiving OPWDD supports and services.
 

  • Family Support Services Councils The Family Support Services Councils advise OPWDD on the Family Support Services (FSS) Program, which assists families who care for a relative with a developmental disability at home. These services provide support to caregivers, enhancing family stability, and preserving family unity. Read about the types of supports and services you can access through the program in our Family Support Services brochure.
     
  • New York State Council on Developmental Disabilities The Developmental Disabilities Act requires a Council on Developmental Disabilities for each U.S. state and territory. The Council on Developmental Disabilities is a New York State agency whose mission is carried out through grants for projects that focus on advocacy, systems change, integration, and inclusion in all aspects of a person’s life.
     
  • Parent to Parent of NYS Parent to Parent of New York State builds a supportive network of families to reduce isolation and empower those who care for people with developmental disabilities or special healthcare needs to navigate and influence service systems and make informed decisions.
     
  • The Eastern New York Developmental Disabilities Advocates (ENYDDA, or “any day”) is an independent, nonpartisan, all-volunteer organization of parents, families and developmentally disabled individuals in the greater Capital Region and eastern upstate New York. Their mission is to educate and inform policy makers, the media and the public on issues impacting our disabled children and loved ones. ENYDDA receives no government or service provider money; its activities are entirely self-supported.
     
  • NYS Council on Children and Families Interagency Resolution Unit- This agency serves children, youth, and young adults from birth to age 22 with physical, emotional, developmental, and/or intellectual disabilities who have multiple care needs and are experiencing difficulty accessing services. 
     
  • NYS Special Education Parent Centers  Parent Centers serve families of children of all ages (birth to 26) and all disabilities (cognitive, physical, behavioral, and emotional). Parent Centers offer a range of services, including one-on-one support and assistance, workshops, publications, and websites. The majority of staff and board members are parents of children with disabilities, allowing them to bring personal experience and expertise to their work with families.
     
  • Independent Living Centers The New York Association on Independent Living (NYAIL)'s mission is to improve the quality of life, safeguard the rights, and ensure equal opportunities for all people with disabilities, as well as promote the independent living philosophy both within the disability community and to the public. 
     
  • The Sibling Leadership Network The mission of the Sibling Leadership Network is to provide siblings of people with disabilities the information, support, and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families.  

 

How to Obtain Records

As an advocate, it is important that you know how to obtain records regarding your loved one with a disability.

In the case of an emergency, contact local law enforcement by dialing 911.

 

Ways to Engage and Stay Informed

Sign Up for OPWDD News and Updates

Sign up to receive OPWDD Announcements, Commissioner's Messages, and Newsletters.

Attend or Participate in OPWDD Public Meetings

OPWDD has three recognized advisory bodies that meet regularly, whose meetings are open to the public. These meetings are not only open for anyone to attend, but they are also a great way for family members to get involved and volunteer. 

The Developmental Disabilities Advisory Council (DDAC) This Council provides recommendations for statewide priorities and goals for services for individuals with developmental disabilities in cooperation with the OPWDD commissioner.

The Statewide Family Support Services (FSS) has a representative from each of the local Family Support Services (FSS) Advisory Councils across the state.

The Autism Spectrum Disorders Advisory Board provides guidance and information to New York policymakers, individuals with an autism spectrum disorder diagnosis (ASD), and families seeking reliable information regarding available services and supports. 


Find all OPWDD Public Meetings here.

Participate in OPWDD-Sponsored Events

Get Outdoors & Get Together Day Get Outdoors & Get Together Day is an annual event held each June on National Outdoors Day at select state parks and DEC sites across the state. The inclusive outdoor event offers fun and accessible activities for everyone.