Resources

Related Links

Benefits for People with Disabilities
https://www.disability.gov/ - Disability Info for Americans Your online connection to the federal government’s disability-related information and resources.
http://www.easterseals.com - 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.
http://www.hdadvocates.org - 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.
http://idea.ed.gov/ - Individuals with Disabilities Education Act (IDEA) IDEA guarantees that students receive help tailored to their unique needs.
http://www2.ed.gov/parents/needs/speced/iepguide/index.html - My child's special needs for school (IEP) A Guide to the Individualized Education Program.
http://www.ssa.gov/disability/ - Social Security Benefits
http://www.thearc.org - 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.
http://www.yellowpagesforkids.com/ - Yellow Pages for Kids with Disabilities Find resources available in your area.

Epilepsy Resources
http://www.abanet.org/legalservices/findlegalhelp/home.cfm - American Bar Association for assistance locating a local attorney or finding reduced-cost legal aid.
http://www.aesnet.org/ - American Epilepsy Society-promotes research and education for professionals dedicated to the prevention, treatment and cure of epilepsy.
http://www.cureepilepsy.org/ - C.U.R.E Citizens United for Research in Epilepsy
http://www.caregiver.com - CareGiver.com-Caregiver Media Group is a leading provider of information, support and guidance for family and professional caregivers.
http://www.chelseahutchisonfoundation.org/ - Chelsea Hutchison Foundation- Their mission to prevent SUDEP- Sudden Death in Epilepsy
http://www.dannydid.org/ - Danny Did Foundation – Their mission is to prevent SUDEP-Sudden Death in Epilepsy
http://www.dravetfoundation.org/ - Dravet Syndrome Foundation - volunteer-based, non-profit organization dedicated to aggressively raising research funds for Dravet syndrome, a rare and catastrophic form of epilepsy beginning in childhood, and related conditions.
http://www.epilepsyadvocate. com - Epilepsy Advocate-We are a community of Advocates and caregivers that lets you connect with those who share the same goal of achieving better seizure control. New personal stories, features, and events are added all the time, so check back often.
http://www.ozville.org/epilepsy/ - Epilepsy and Water Safety Epilepsy and water don’t mix!
http://www.epilepsyfoundation.org - Epilepsy Foundation Find your local Epilepsy Foundation chapter.
http://www.epilepsy.com/ - 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.
http://www.ice-epilepsy.org/ - ICE-The Intractable Childhood Epilepsy Alliance (also known as the Ion Channel Epilepsy Alliance) is committed to facilitating the understanding of the root cause of the epilepsies and avenues to better treatment and ultimately a cure.
http://www.ketovolve.com/ = 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
http://www.lgsfoundation.org/ - Lennox-Gastaut Syndrome Foundation An organization dedicated to raising awareness of Lennox-Gastaut Syndrome.
http://livingwithlgs.com/ - Living With LGS is a site with useful and usable information ofr those living and caring for someone with Lennox-Gastaut Syndrome. The website also features several other educational resources designed specifically for the caregiver, such as videos, tip sheets and information about finding support.
http://www.myketocal.com/index.html - 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.
http://www.naec-epilepsy.org/default.htm - National Association of Epilepsy Centers Find specialized medical and surgical care for epilepsy.
http://www.nfcacares.org - National Family Caregiver Association- The National Family Caregivers Association educates, supports, empowers and speaks up for the more than 65 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. NFCA reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers' lives by removing barriers to health and well being.
http://www.rarediseases.org - National Organization for Rare Disorders- The National Organization for Rare Disorders is dedicated to helping the nearly 30 million Americans with rare diseases, and the organizations that serve them, through programs of education, advocacy, research, and patient services.
http://www.seizuretracker.com/ - Seizure Tracker Log and track seizure activity, appointments, and medication schedules through a simple calendar interface.
http://specialedlaw.blogs.com/ - Special Education Law Blog - Special education legal resource. Charles P. Fox, Special Ed Advocate and father of a special needs child.
http://www.sudepaware.org - SUDEP Aware-their mission is to promote knowledge and understanding of Sudden Death in Epilepsy (SUDEP) through education, research, support and collaboration
http://www.talkaboutrx.org - TalkAboutIt.org- A website created by actor Greg Grunberg to promote “talking about epilepsy.”
http://www.ada.gov/ - 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.
http://www.tylerfoundation.org/ - 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
http://www.vnstherapy.com/ - Vagus Nerve Stimulation VNS Therapy is a non-drug treatment option that offers a unique safety profile and mechanism of action.
http://wisconsinseizure.net/index.htm - 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.
http://www.wrightslaw.com/ - 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.
http://www.cdc.gov/epilepsy/toolkit/index.htm - You Are Not Alone: Toolkit for Parents of Teens with Epilepsy - Department of Health and Human Services, Centers for Disease Control and Prevention, Epilepsy.

Financial Assistance
http://www.cms.hhs.gov/home/medicaid.asp - 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.
http://www.cms.hhs.gov/MedicaidStWaivProgDemoPGI/MWDL/list.asp - 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.
http://www.ncsl.org/programs/health/chiphome.htm - SCHIP State Children’s Health Insurance Program.
http://www.ssa.gov/pubs/10026.html - Social Security Benefits for children with disabilities.
http://www.talkaboutcuringautism.org/resources/tax-strategies/tax-strategies-for-parents-of-special-needs-children.htm - Tax Strategies for Parents of Kids with Special Needs
http://www2.ed.gov/nclb/landing.jhtml - 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
http://needymeds.com - Needymeds A list of programs that assists people who cannot afford medicine or healthcare costs.
https://www.pparx.org - Partnership for Prescription Assistance A tool to help find patient assistance programs that you may qualify for.
http://www.epilepsyfoundation.org/epilepsyusa/news/Patient-Assistance-Program.cfm - MAINTAIN (Medicines Assistance for Those who Are in Need) by Pfizer for Pfizer products
http://www.efwp.org/programs/pap_list.shtml - A list of medications and their contact information for patient assistance programs

Recreation
http://www.courageouskids.org/default.aspx - 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.
http://www.mysummercamps.com/ - Summer Camps

Safety Sites
http://www.adaptivemall.com/sptososi.html - Adaptive Mall Special needs equipment - keeping your child safe.
http://www.emfit.com/care/products_care/movement-monitor/ - Emfit Technology Movement Monitor for bed.
http://www.sleep-safe.co.uk/ - Sleep Safe Anti-Suffocation Pillow.
http://www.stickyj.com/medical-emergency.html - Sticky J Jewelry Medical Alert Bracelets.
http://www.x10.com/homepage.htm - X-10 Video Camera Video Camera to capture seizures during sleep.
http://www.medids.com/free-id.php - Free Medical ID Card for your wallet Create and print an ID Card to carry with you at all times
http://www.thumperbumpers.net/features.html - Thumper Bumpers - Protective Safety Hats
http://roadid.com/common/products.aspx - 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.
http://www.seizuresupport.com/ - Seizure Support - the world's only safety placemat - great for at the dinner table!
http://www.taptotalk.com/index.aspx - 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.

Support Groups
http://www.charliefoundation.org/ - Charlie Foundation Ketogenic Diet Resources.
http://www.coping-with-epilepsy.com/ - Coping-with-Epilepsy Free Forum Community.
http://www.idea-league.org/ - International Dravet Syndrome Epilepsy Action League The IDEA League is an international partnership of parents and professionals united in the purpose of creating greater awareness and understanding of Dravet Syndrome and the spectrum of genetic, febrile sodium channel epilepsies.
http://www.laurensmiracle.org/ - Lauren’s Miracle A wonderful Ketogenic Diet success story.
http://www.matthewsfriends.org/ - Matthews Friends To aid and support parents through our own experiences with our children in managing the Ketogenic Diet.

http://groups.yahoo.com/ - Yahoo Groups Connect with a world of people that share your concerns.
http://lgsfoundation.org/ - LGS Foundation - support for those living with Lennox Gastaut Syndrome
http://www.mdjunction.com/epilepsy - Epilepsy Support Group - A community of patients, family members and friends dedicated to dealing with epilepsy together.

Therapies
http://www.childtherapytoys.com/store/index.html - Child Therapy Toys
http://www.citykidsinc.com/ - City Kid’s, Inc.
http://www.state.il.us/agency/dhs/earlyint/earlyint.html - Early Intervention
http://www.placeofhope.com/index.asp?str_string=Programs~Horseback%20Riding%20Therapy~none - Horseback Riding Therapy
http://www.songsoflove.org/ - Songs of Love
http://www.kidshealth.org/parent/system/ill/speech_therapy.html - Speech Therapy