DSCC Fact Sheets Resources
National PTA Special Education Toolkit for Parents and Caregivers
National PTA promotes family-school partnerships and building community at the local, state and national levels. Its website offers a variety of family-focused resources, including a Special Education toolkit, Parents’ Guide to Student Success, College and Career Readiness resources and more.
National Resource Center for Patient/Family-Centered Medical Home
The National Resource Center for Patient/Family-Centered Medical Home provides information, support, and advocacy for families and pediatric healthcare professionals who care for children with special needs in managed care arrangements. The “medical home” isn’t a place. It is an approach focusing on strengthening and improving the system of care for children and youth with special health care needs and their families.
Located on the American Academy of Pediatrics website, the National Resource Center for Patient/Family-Centered Medical Home offers:
- Information on why a medical home is important
- A medical home overview and FAQs
- Tools and resources for families
- Resources for medical professionals
- Care coordination resources
National Resource Center on Supported Decision-Making
The National Resource Center for Supported Decision-Making is dedicated to protecting everyone’s right to make choices. Supported decision-making is a way people with disabilities can make their own decisions and stay in charge of their lives while receiving any help they need to do so.The National Resource Center for Supported Decision-Making can help you find information on supported decision-making, connect you with people and organizations that may be able to help you, and answer your questions.The National Resources for Access, Independence, Self-Determination and Employment (RAISE) Technical Assistance Center provides technical assistance and resources to support youth and young adults with disabilities and their families during the transition to adulthood. RAISE provides information, toolkits, webinars and support to help individuals:
- Better understand vocational rehabilitation and independent living programs and services
- Communicate more effectively with transition, rehabilitation and other professionals
- Understand the Rehabilitation Act and how it supports employment, supported employment and independent living
- Develop an Individualized Plan for Employment
RAISE’s resources include:
- The RAISE Youth Engagement Toolkit Series
- Parent Centers
- Resources for self-advocates, families, partners and parent centers
- Adult Ally Toolkit and Podcasts – to guide and empower adults in disability advocacy, post-secondary transition, education and beyond
Many of the resources are also available in Spanish.
ARCH National Respite Network and Research Center provides a National Respite Locator on its website as well as additional resources for finding respite in your community.
The National Runaway Safeline is a 24-hour, seven-day-a-week crisis connection line for youth at risk of running away or already have and are looking for help.
Call: (800) Runaway (786-2929)
Text: 66008
National Technical Assistance Center on Transition: The Collaborative (NTACT:C)
The National Technical Assistance Center on Transition: The Collaborative (NTACT:C) provides a wide range of information, training and supports to build and strengthen services and instruction for secondary students and out-of-school youth with disabilities. Its website offers:
- Training and technical assistance.
- Easy-to-find transition topic areas. Each topic includes an additional list of key resources, related topics and training webinars.
- Webinars and toolkits
Navigating Health Insurance and the Health Care System
The Patient Advocate Foundation (PAF) provides valuable information and understanding to patients navigating the healthcare system.
PAF’s Education Resource Library offers information on a wide variety of individual health and health insurance-related topics including:
- Finding and Selecting Insurance
- Making the Most of Your Health Insurance
- Engaging with Insurers: Appealing a Denial
- The Insider’s Guide to Drug Formularies & Medication Benefits
The PAF also offers information and resources in Spanish.
PAF is also available by phone on Monday through Friday from 7:30 a.m. to 4 p.m. at (800) 532-5274.
NeedyMeds is a national non-profit organization providing information on healthcare and medication programs designed to help people afford their medications and other healthcare costs. NeedyMeds can help with paying for prescriptions, finding a free clinic and understanding your healthcare options. All the information is free, easy to access and updated regularly.
NeedMeds also offers:
- A toll-free helpline at (800) 503-6897 weekdays from 8 a.m. to 4 p.m.
- A directory of affordable health clinics for medical, dental, behavioral health and substance abuse services
- Assistance with finding a private or government-funded organization offering help with treatment costs associated with specific diagnoses
- A Patient Assistance Program (PAP) providing free or discounted medicines to people who are unable to afford them
- Information on coupons, savings cards, rebates and co-pays
NeuroJourney is an educational resource for parents, caregivers and clinicians navigating the ever-evolving needs of children with severe neurological impairment (SNI).
You can find both practical and medical information and insights from parents and clinicians about the social and emotional experiences common to having a child with SNI. Resources include a Caregiver Worksheet as well as guidance to help build the care team, prompts for conversations with specialists and more.