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Resource Library


NYSARC maintains an active library of resources to help people navigate the world of developmental disabilities, from the first inklings that a child may have an intellectual or developmental disability, to the needs of older people with developmental disabilities.

We encourage you to browse the resources below, search for a specific document, or click the "The NYSARC Library in Delmar" button to the left to arrange a visit to the NYSARC Library in Delmar.

  • 2012 Annual Guardianship Training Symposium: Supporting Healthcare Decision Making and Advance Care

    As more and more people with ID/DD are supported in the community and are living longer, the need to plan around health care, healthcare decision making decisions and end of life wishes will continue to increase. This session will provide an introduction to using person centered practices to support conversations around healthcare decision making and development of plans that may include, when necessary, end of life wishes; in addition, we will also review and some of the lessons learned in doing advance care planning with people with ID/DD.

    Presented by: Leigh Ann C. Kingsbury, MPA, Gerontologist InLeadS, Inc. Consulting and Training

  • 5 Wishes

    "5 Wishes" is a well-conceived booklet on advance planning for medical care and end-of-life decisions by The Robert Wood Johnson Foundation. Wishes 3-5 are what make Five Wishes different from all other advance directives in that they deal with the personal, spiritual and family concerns that people say matter most. There are currently 15 million copies of Five Wishes in national circulation, distributed by some 23,000 partner organizations nationwide.

  • A Mother's Courage: Talking Back to Autism

    Imagine not being able to express your thoughts or feelings to anyone. Imagine having to depend on the assistance of others with every mundane task. Imagine living with these limitations despite having an active mind. In A Mothers Courage: Talking Back to Autism, the mother of an autistic boy from Iceland travels to the U.S. to research new therapies for children with autism, in the hopes of unlocking the autistic mind.

  • Advance Health Care Directives

    An Informational Booklet on Healthcare Decisions for Individuals who have Developmental Disabilities, their Families, Services Providers and Advocates on Healthcare Decisions. Includes a simplified healthcare proxy form.

  • Advocacy Monograph 2: Medicaid Managed Care (1998)

    Can managed care manage the risk of people with developmental disabilities? A wake-up call presented by NYSARC, Inc.

  • Advocacy Monograph 3: End-of-Life Care (2004)

    A guide for supporting older people with intellectual disabilities and their families. A policy monograph series.

    Anne L. Botsford, Ph.D., ACSW
    Lawrence T. Force, Ph.D.

  • Advocacy Monograph 3: Resource Supplement

    Contains agency resource, audio/visual resources, and the following forms:

    • Consent to anatomical gifts
    • Authorization for medical treatment
    • Nonhospital order not to resuscitate (DNR Order)
    • Health care proxy
    • Burial information form
    • Information for obituary/eulogy

  • Advocacy Monograph 4: Making the Connection (2008)

    A collaborative project of NYSARC, Inc.; Hospice and Palliative Care of New York State; and OPWDD. The monograph offers a cross-systems training approach that enables staff in developmental disabilities agencies and staff in hospice and palliative care agencies to understand other systems and to build a team approach. Organizational and personal issues are addressed to help increase access to hospice and palliative care for people with developmental disabilities. To obtain a copy of the monograph, contact the NYSARC, Inc. State Office at 518-439-8311 or by email at info@nysarc.org

  • Alzheimer's Disease Information Network

    The Alzheimer's Disease Cooperative Study (ADCS), in collaboration with the National Institute on Aging is developing a nationwide information network of people who are affected by Alzheimer's disease (AD), have undiagnosed memory disorders, or are interested in learning more about AD and dementia.

  • And Now Let's Build a Better World

    The story of the Association for the Help of Retarded Children, New York City 1948-1998. Provides a useful history of The Arc movement in New York. Written by David Goode.

  • Austim Speaks iOS Apps

    A list of applications for use with iOS-powered devices like the iPad and iPhone for people with autism spectrum disorders (ASDs) and their families.

  • Autism NOW Center

    The Autism NOW Center is the nation's source for resources and information on community-based solutions for individuals with autism, other developmental disabilities, and their families.

  • Autism Society: Improving the Lives of All Affected by Autism

    The Autism Society, the nation’s leading grassroots autism organization, exists to improve the lives of all affected by autism. We do this by increasing public awareness about the day-to-day issues faced by people on the spectrum, advocating for appropriate services for individuals across the lifespan, and providing the latest information regarding treatment, education, research and advocacy.

  • Autism Speaks Transition Toolkit

    The Autism Speaks Transition Tool Kit was created to serve as a guide to assist families on the journey from adolescence to adulthood.

  • Autism Support Network: Creative ideas for getting mouth and body moving

    Join this free support community and connect with thousands of other families and individuals touched by ASD. Find out what’s working for others, coping strategies, and life guides from others living what you’re going through now.

  • Booster Seats - Fact Sheet

    Traffic accidents are the leading cause of death for children ages 6 to 14—a fact that can be linked, at least in part, to the unfortunate reality that many, if not most, children are improperly restrained, or worse yet, not restrained at all, while riding in motor vehicles.

  • Bus Stop Club

    Started in 2005, the Bus Stop Club provide opportunities for siblings of children with chronic illness or special needs to go under the care and supervision of healthcare workers and to get the support they need to help overcome the everyday battles they are faced with.

  • Capwiz Legislative Action Center

    The Action Center provides NYSARC's volunteers, parents, consumers and employees the ability, through e-mail, to instantly convey their opinions to decision makers, including state legislators, the Governor and members of the US Congress.

  • Center on Budget and Policy Priorities

    The Center on Budget and Policy Priorities is one of the nation’s premier policy organizations working at the federal and state levels on fiscal policy and public programs that affect low- and moderate-income families and individuals.

  • Childhood Mercury Poison Prevention Fact Sheet

    Mercury Pollution: Children in Danger! Children Exposed to Unsafe Mercury Levels Even Before Birth