Resources

 

The Child Nuerology Foundation - New Tranistion of Care Video Series

Each patient transitioning from a child neurologist to an adult neurologist will have unique experiences and needs. CNF’s Transition of Care Program—its largest and most diverse program—helps to support youth, families, and child neurology teams in the medical transition from pediatric to adult health care systems.

 

Autism Speaks - Transition Into Adulthood Toolkit

Autism Speaks is excited to announce the launch of Version 2.0 of the popular Transition Tool Kit. The Autism Speaks Transition Tool Kit was created to serve as a guide to assist families on the journey from adolescence to adulthood.

 

E-Parent - Special Needs Resources Directory

eParent Special Needs Resource Directory provides a comprehensive guide for parents and families of children with chronic health issues, disabilities and special needs, as well as to physicians, allied health care professionals and educational professionals who are involved in their care and development. This directory is designed to assist in your search for helpful information and resources for every situation.

 

NORD - Protecting Rare Disease Patients: Principles for Health Care Reform

Before the Affordable Care Act (ACA) was enacted in 2010, rare disease patients could not access health care coverage due to various discriminatory insurance practices, limited Medicaid eligibility, and debilitating cost-sharing. While imperfect, the Affordable Care Act successfully reformed these practices by forbidding insurers from discriminating against rare disease patients, outlawing annual and lifetime caps, expanding Medicaid, closing the Medicare Part D donut hole, and more. 

 

 Mother's Rest - Respite Retreats 

At A Mother's Rest, we believe that frequent, affordable respite is a key factor in keeping special needs parents and caregivers healthy.   Ensuring the best care of disabled children and adults means ensuring the best care for their parents.