Provides news, stories, resources and more.
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.
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?
By Sandra Peters, Regional Coordinator
Provides education, peer support and resources for family caregivers.
By Janice Fitzgerald
By U.S. Department of Justice, Civil Rights Division, Disability Rights Section
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.”
Provides information, support, ideas, encouragement and outreach for parents and families of children with disabilities, and the professionals who work with them.
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.
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 ….
A Health Care Notebook is an organizational tool for families who have children with special health care needs.
By Mary Jo Hebert, MSC Upstate Program Assistant and Regional Coordinator
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.
The New York State Kinship Navigator is an information, referral and advocacy program for kinship caregivers in New York State.
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.
Provided By NYSARC, Inc.
By Rick Reilly
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.
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.
By Rosemary Randazzo, Regional Coordinator