Related Links

Benefits for People with Disabilities

  • Disability Info for Americans Your online connection to the federal government’s disability-related information and resources.
  • Health and Disability Associates Wonderful website that explains in layman’s terms community resources for people with disabilities. Also, a great asset for people who have had their Federal disability benefits initially denied.
  • Individuals with Disabilities Education Act (IDEA) IDEA guarantees that students receive help tailored to their unique needs.
  • My child’s special needs for school (IEP) A Guide to the Individualized Education Program.
  • Social Security Benefits
  • Yellow Pages for Kids with Disabilities Find resources available in your area.
  • The MORGAN Project Working together to promote awareness and support of parents caring for their special-needs children, and to enhance the quality of life for these special families
  • The Arc is a community-based organization that advocates for the rights of children and adults with intellectual and developmental disabilities. It provides various services and support for individuals and families.
  • Easter Seals is a charitable organization that assists children and adults with autism and other disabilities and special needs. It provides services, therapies, and treatments tailored to individual communities.

Epilepsy Resources

  • C.U.R.E Citizens United for Research in Epilepsy
  • Epilepsy and Water Safety Epilepsy and water don’t mix!
  • Epilepsy Foundation Find your local Epilepsy Foundation chapter.
  • Danny Did Foundation Mission is to prevent deaths caused by seizures.
  • Lennox-Gastaut Syndrome Foundation An organization dedicated to raising awareness of Lennox-Gastaut Syndrome.
  • Seizure Tracker Log and track seizure activity, appointments, and medication schedules through a simple calendar interface.
  • Vagus Nerve Stimulation VNS Therapy is a non-drug treatment option that offers a unique safety profile and mechanism of action.
  • www.epilepsy.com epilepsy.com is dedicated to providing the most comprehensive source of information, tools and community available online for patients, their families, healthcare professionals and the research community, and is a program of the Epilepsy Therapy Project.
  • You Are Not Alone: Toolkit for Parents of Teens with Epilepsy - Department of Health and Human Services, Centers for Disease Control and Prevention, Epilepsy
  • National Association of Epilepsy Centers Find specialized medical and surgical care for Epilepsy
  • MyKetoCal - KetoCal 4:1 and KetoCal 3:1 are the only nutritionally complete ketogenic formulas designed with the caregiver in mind when administering the ketogenic diet
  • KetoVolve - 4:1 Ratio Powder that is nutritionally complete, ketogenic formula designed to maintain a high level of ketosis required to control drug resistant epilepsy in children 1-8 years
  • Doose Syndrome (MAE) A website created by a parent of a child with Doose Syndrome. Learn ways to protect your child and find the best treatment available.
  • Wisconsin Seizure Control Network  The Wisconsin Seizure Control Network network is a group of agencies, families, and individuals working together to make Wisconsin the best place in the world for children with seizures, and for those who care for them.
  • The Tyler Foundation provide financial support (non-medical expenses) to families' of children with epilepsy that are being treated at Boston Children's Hospital and UMASS Medical Center

 Financial Assistance

  • All Kids Covered Illinois’ Program to Provide health care to All Kids.
  • SCHIP State Children’s Health Insurance Program.
  • Social Security Benefits for children with disabilities.
  • Tax Strategies for Parents of Kids with Special Needs
  • Medicaid makes it possible for certain low-income individuals and families to get health care when they could otherwise not afford it. It is available only to certain low-income individuals and families who fit into an eligibility group that is recognized by federal and state law. Medicaid sends payments directly to health care providers.
  • Medicaid waivers are available for certain individuals who do not meet the income limits that Medicaid requires. It may cover the expenses that primary health insurance does not. The following page contains information on the different Medicaid waiver programs available in each state.
  • The No Child Left Behind Act (NCLB) is a federal law that reauthorized several federal programs in order to improve the performance of primary and secondary schools in the United States. The law is guided by four principles: accountability, flexibility and local control, parental choice, and what works.

 Medication Assistance Programs

 

Recreation

  • Center for Courageous Kids A stellar medical camping facility, designed specifically for the child with medical challenges and his/her family members, at no cost to them. Located in Scottsville, KY.
  • Summer Camps

 

Safety Sites

  • Adaptive Mall Special needs equipment - keeping your child safe.
  • Emfit Technology Movement Monitor for bed.
  • Sleep Safe Anti-Suffocation Pillow.
  • Sticky J Jewelry Medical Alert Bracelets.
  • X-10 Video Camera Video Camera to capture seizures during sleep.
  • Free Medical ID Card for your wallet Create and print an ID Card to carry with you at all times
  • Thumper Bumpers - Protective Safety Hats
  • RoadID - This awesome piece of gear not only looks good but it could save your life. In the event of an accident, if you can't speak for yourself, your Road ID will. Available in 6 different styles. It's not just a piece of gear - it's peace of mind. 
  • Seizure Support - the world's only safety placemat - great for at the dinner table!
  • TaptoTalk - TapToTalk gives a non-verbal child a voice with the tap of a picture. It turns a handheld Nintendo DSi or DS Lite into an augmentative and alternative communication (AAC) device. 

 

Special Education Laws

 

  • Special Education Law Blog Special education legal resource. Charles P. Fox, Special Ed Advocate and father of a special needs child.
  • Wrightslaw is a website that provides reliable information and resources about legal issues concerning education law, special education law, and advocacy for children with disabilities.
  • American Bar Association for assistance locating a local attorney or finding reduced-cost legal aid
  • The ADA is a federal civil rights law that forbids discrimination based on disability in certain situations. The act defines a disability as a physical or mental impairment that substantially limits one or more major life activities.
     

 

Suggested Reading

 

 

Support Groups

 

Therapies

 


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In developing countries, 60% to 90% of people with epilepsy receive no treatment due to inadequacies in health care resources and delivery, and due to social stigma.

World Health Organization