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AARP’s Caregiver Resource Center

Provides news, stories, resources and more.

American Psychological Association’s Caregiver Briefcase

A user-friendly online resource to help psychologists and other health and social service professionals assist family caregivers through individual and organizational practice, research, teaching, and community service. Family caregivers will also find useful information in the resources section of the briefcase.

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Booklet of Tips for Families of Individuals with Special Health Care Needs

This booklet of tips sheets is available here in PDF or by contacting your Regional Office.

Compiled by reaching out to families and learning from them, this is a booklet of tip sheets for parents and other caregivers on topics that all families think about: Stress Reduction Tips , Coping with Your Child’s Health Care Needs, Medical Prescription Tips ,Tips on Handling Medical Appointments, Record Keeping, Researching Health Care Information on the Internet, Disability and Emotions and When Your Child is Diagnosed with a Disability - What Next?

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Care Giving & Taking Care

By Sandra Peters, Regional Coordinator

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Caregiver Action Network (CAN)

Provides education, peer support and resources for family caregivers.

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Caregiving: A Personal Story

By Janice Fitzgerald

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Commonly Asked Questions About Child Care Centers and the Americans with Disabilities Act

By U.S. Department of Justice, Civil Rights Division, Disability Rights Section

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Coping and Stress Reduction Facts and Tips

Coping and Stress Reduction Facts and Tips - in Spanish

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Dave, The Caregiver’s Caregiver

This site has the tagline “Your Guide to Avoiding Burnout & Surviving Grief” and states that the site was “developed to help caregiver’s overcome obstacles, adversity, and burnout, as well as just having a place to rest, relax and recharge their batteries.”

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Exceptional Parent Magazine

eParent (Exceptional Parent) is a an award-winning publishing and communications company. eParent provides practical advice, emotional support and the most up-to-date educational information for families of children and adults with disabilities and special healthcare needs as well as to the physicians, allied health care professionals, and educational professionals who are involved in their care and development.

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Family Caregiver Alliance’s National Center on Caregiving

Supports and sustains the important work of families nationwide caring for loved ones with chronic, disabling health conditions. At their website caregivers can sign up for E-newsletters, join an online caregiver group, share their caregiver story and much more.

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Family Caregivers of Children with Special Health Care Needs Fact Sheet

Family Caregivers of Children with Special Health Care Needs: The Need for Caregiver Support as Truly Family-Centered Care is a fact sheet by MN LEND Program

When the U.S. government, programs, providers, and health care insurers fail to recognize the importance of family caregiver support, the family caregiver lacks important supports—respite care, time, mobility, money, and supportive networks—which reduce her/his ability to self-care with personal health visits, mental health services, support groups, social support, and personal time to de-stress. This impacts the health and well-being of the CYSHCN and the entire family throughout the life course. Issues, need, and facts ….

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Future Care Planning: A Roadmap for Family Caregivers

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Health Care Notebook

A Health Care Notebook is an organizational tool for families who have children with special health care needs.

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Health Care Notebook in Spanish - Cuaderno del cuidado médico

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Lessons Learned - 10 Years Later

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National Alliance for Caregiving

Their tagline reads, “advancing family caregiving through research, innovation, and advocacy” and at their website one can read the research findings, learn about advocacy opportunities, find resources, newsletters and more.

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NYS Article 17-A Guardianship

In New York State, when a person becomes 18 years old they are assumed to be legally competent to make decision for themselves. This means no other person is allowed to make a personal, medical or financial decision for that individual. If a person is "intellectually disabled or developmentally disabled," has difficulty making decisions for themselves and over 18 years old, you can ask the Surrogate's Court to appoint a guardian for him or her. An Article 17-A Guardianship is available only for individuals who are "intellectually disabled or developmentally disabled." These are the legal terms used in Article 17-A of the Surrogate's Court Procedures Act. An Article 17-A Guardianship is very broad and covers most decisions that are usually made by a parent for a child such as financial and healthcare decisions.

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NYS Kinship Navigator

The New York State Kinship Navigator is an information, referral and advocacy program for kinship caregivers in New York State.

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Parents’ Perspective video series

The Center for Learning and Leadership, Oklahoma’s University Center for Excellence in Developmental Disabilities (Oklahoma UCEDD) developed a short video series featuring parents of children with intellectual and developmental disabilities, or special health care needs. In the videos parents share their perspectives on getting a disability diagnosis, supporting their children through transitions in the school system, and dealing with emergency personnel. Learn more about the parent’s perspective of disability diagnosis, educational transition, and emergency medical services in the short video series, Parents’ Perspective.

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Save A Child’s Life…Use A Booster Seat!

Provided By NYSARC, Inc.

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Sibling Resources

Sibling Resources is a website focused specifically on siblings of people with intellectual/developmental disabilities.

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Strongest Dad In the World

By Rick Reilly

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Supporting People with Disabilities as They Age

The fastest growing age group served by NYS Office for People with Developmental Disabilities is those over 50 years of age. Disabled or not, we are all aging. We all face the same challenges, need the same supports, and compete for the same services. We know that we will face more and more challenges related to aging as time moves on.

With support from the NYS Developmental Disabilities Planning Council, this document has been developed by NYS OPWDD to assist in supporting people with disabilities as they age.

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The Caregiver Space

This site describes itself as “a safe and open space where you can be real about what it’s like to care for someone dealing with a serious disability or illness”. The site offers forums, caregiver stories, The Caregiver’s Toolbox and more.

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Tips For Parents and Caregivers of Children With Developmental Disabilities

People with developmental disabilities have recently been identified as a group at risk of developing alcohol and drug addictions, as well as sexual exploitation and sexual abuse.

This is an under-researched area, so the ideas expressed are suggestions for parents to keep in mind, rather than evidence-based addiction prevention practices (although some are considered good practice for other reasons). At this point, little is known about how addictions develop in this population, except that there has been an escalation in the risk of addictive behaviors.

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When A Doctor’s Note Can Help: A Step-by-Step Guide to Obtaining a Useful Letter

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When Your Child Has Been Diagnosed with a Disability or Chronic Condition

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You Can Make A Difference

By Rosemary Randazzo, Regional Coordinator

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