Resources & advice to help you take on epilepsy. Here you’ll find helpful resources compiled from around the Web, stories, videos, and articles written by medical professionals, caregivers, and epilepsy experts like yourself.
Special Needs Resource Project (SNRP) provides a basic guide for parents of children with chronic health issues, disabilities and special needs. This site is designed to help you get a jump-start in your search for helpful information and resources. Every situation is unique. Our aim is to help you learn the basic skills you’ll need to obtain the specific resource information, equipment, and services your child and family needs. Though focused on children ages 0-22, most of the information we offer is applicable to adults as well.
eParent Special Needs Resource 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.
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.
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.
Understanding Accessible Housting: The Fair Housing Act
An accessible home is one that allows its occupant to do what he or she wants and needs to do, as independently as possible. If you or someone in your family is disabled, your home may need specific modifications to make it accessible for daily living. You are protected under the Fair Housing Act, which stipulates property owners to make, or allow residents to make, a home accessible for those with specific or special needs.
We know that 15-20% of our school children have IEPs. Why are we not educating communities about this? We owe it to our kids, both the non-disabled and disabled ones. They have to learn how to interact, how to live and work together. This is their future and it’s ours.
At the Kids Crew, we want you to use your imagination and think creatively. We know kids have unique gifts that can be used to give back to others under the three areas on which we focus. We want you to take it upon yourself to come up with ideas that can impact your community based on what you have experienced. Doing so allows for teamwork, helps you learn more about epilepsy, and gives you confidence. Our belief is that you can use your talents to give back to others and to make a real difference. The program is free to join and is for kids ages 14 and under of all abilities. If you don’t have epilepsy, we still want you to join. Often, siblings, friends, and relatives of those with epilepsy are the best advocates. We are looking for those who want to learn, spread awareness, and make a difference. And have fun, too!!
The Mission of Angel Flight East: To provide free air transportation to qualified patients and their families by arranging flights to distant medical facilities, delivering supplies to disaster areas, and reuniting families during desperate times. Angel Flight East facilitates transportation in the Northeastern region of the United States for distances up to 1,000 miles. The minimum distance AFE travels is 100 miles. (See our Service Area Map) For flights longer than 1,000 miles or flights originating in other states, please visit the Air Care Alliance.
Darby’s Dancers is a 501(c)(3) organization dedicated to providing dance classes to children with special needs at no cost to their parents. With locations across the US, Darby’s Dancers learn all types of dance in a fun, encouraging atmosphere. Dancers in the program gain confidence, coordination, strength and lifelong friends, all while feeling like a star. DD also provides volunteer opportunities for teens. Our youth volunteers learn important lessons in responsibility and friendship by providing one-on-one assistance to each of Darby’s dancers.