Directory of Resources

Important New York State Websites

Consumer Directed Personal Assistance Association of NYS: Provides advocacy and promotion of consumer control and self determination in long-term care services. Members are Medicaid vendors who are the fiscal intermediaries that allow individuals and families to receive long-term care at home.

Department of Health Long Term Care: Provides access to all of the options available in NY State to support long term care services.

Developmental Disabilities Planning Council: The New York State Developmental Disabilities Planning Council is a Federally-funded New York State agency working under the direction of the Governor’s Office. The DDPC is responsible for developing new ways to improve the delivery of services and supports to New Yorkers with developmental disabilities and their families. This web site is an excellent starting point for families of individuals with medically fragile conditions.

The Independent Living Center in your region offers advocacy and support to people of all ages with all types of disabilities, and can help identify other disability advocacy groups in a region. The guiding principles of independent living are that individuals with disabilities have a right to dignity, personal responsibility, and self-determination.

NYS ARC: A statewide association that assists in obtaining necessary services and benefits for individuals with developmental disabilities. They have chapters throughout the State and offer a variety of services.

NY Connects: New State website to help access Long-Term Care in individuals’ homes or other community-based residential settings. Includes legal, financial resources. Across New York State there are a wide range of services available to those in need of long term care that allow them to continue to participate in family and community life. Supportive services are also available to help caregivers cope with and understand their responsibilities.

NY Health Access: Website sponsored by the Empire Justice Center, The Legal Aid Society, Self Help, and Western New York Law Center.

Nursing Homes in NY State: Services provided, surveys of nursing homes’ quality, statistics on occupancy and more.

Office for People With Developmental Disabilities: Perhaps one of the most important web site overall for persons with medically fragile conditions and their families. A wealth of information for persons with developmental disabilities and their families, benefit related information, opportunities, residential possibilities and much more.

The Self Advocacy Association:  Supports people with developmental disabilities, promoting self advocacy. It has regional offices throughout the state.

UCP: United Cerebral Palsy offers services provided by our affiliates, which include housing, therapy, assistive technology training, early intervention programs, individual and family support, social and recreation programs, community living, state and local referrals, employment assistance and advocacy.

Governmental Agencies in New York State

  • Commission on Quality Care & Advocacy for Persons with Disabilitiesprovides “independent oversight of programs and services, and offers legal, advocacy, training, information, and technical assistance services.”
  • Department of Health Long Term Care, please see description above.
  • Developmental Disabilities Planning Council, please see description above.
  • Education Department, comprehensive web site providing all details and processes involved in an individual’s rights, school transition and planning.
  • Health Department, the web site of the State’s Department of Health, offering a wealth of detail on Medicaid, long term care, nursing homes and much more.
  • Housing and Community Renewal, is the Division of all the State’s major housing and community renewal agencies, including The Affordable Housing Corporation, The Division of Housing and Community Renewal and more.
  • Office of Mental Health is the New York State agency that “operates psychiatric centers across the State, and also regulates, certifies and oversees more than 2,500 programs operated by local governments and nonprofit agencies, and include inpatient and outpatient programs, emergency, community support, residential and family care programs.”
  • Nursing Homes in NY State, please see description above.
  • Office for People With Developmental Disabilities, please see description above.

New York State Coalitions and Advocacy Groups

  • Disabled and Alone Life Services was created to help families plan for the time when they will no longer be alive and able to care for their loved ones.
  • NYS Association of Community and Residential Agenciesrepresents more than 200 not-for-profit service provider agencies. The supports provided by these agencies include: supportive and supervised residential living alternatives, day habilitation, prevocational and vocational training, family care and respite services, and more.”
  • Neighborhood Preservation Coalition of NYS aims to revitalize New York State’s urban and suburban areas,provides information on federal housing policies and advocacy services.
  • NYS Rural Housing Coalition, Inc is committed to “providing safe, affordable housing for low- and moderate-income rural New Yorkers.”

Disability Advocacy Groups

Council for Disability Awareness: The site offers tools and information to help wage-earners, employers, human resource professionals, families, financial and insurance advisors make informed decisions about planning for the financial impact of disability.

Disability Information: National government website provides information about disability programs, services, laws and benefits.

Disability Information and Resources:  A list to access a wide range of medical and disability related products and assistive technology.

National Organization on Disability (NOD):  National advocacy organization that promotes full participation of America’s 54 million people of all ages with disabilities in all aspects of life.

TASH:  National advocacy organization promoting equity, opportunity and inclusion for people with disabilities.