Alternating Hemiplegia of Childhood Foundation
Helpful Links
Medical
Dystonia Medical Research Foundation https://www.dystonia-foundation.org/ Epilepsy Foundation http://www.epilepsy.com/ CURE Epilepsy www.cureepilepsy.orgTherapy
American Physical Therapy Association http://www.apta.org/ American Occupational Therapy Association http://www.aota.org/ American Speech-Language-Hearing Association (ASHA) http://www.asha.org/ American Hippotherapy Association http://www.americanhippotherapyassociation.org/ Intensive Model of Therapy (IMOT)- Description and more information here.Funding of Equipment:
Disabled Children’s Relief Fund-Funding resource provides disabled children with assistance to obtain wheelchairs, orthopedic braces, walkers, lifts, hearing aids, eyeglasses, medical equipment, physical therapy, and surgery. http://bit.ly/1ASXUXY Fund it Forward – raises money for adaptive equipment not covered by health insurance. http://www.funditfwd.org/ The Lindsay Foundation – Named after Lindsay McMillan who passed away in 1999 the the Lindsay Foundation is dedicated to assisting families that have children who have been diagnosed with long-term catastrophic illnesses, have not reached the age of 18 years, and reside at home. Grants are awarded based on the child’s need, not the family’s income. http://www.lindsayfoundation.org/ The M.O.R.G.A.N. Project – has been created with love BY parents of a child with special needs, FOR parents of children with special needs. -providing resources, gently used disability equipment exchange, and new bath/chairs and conference scholarships http://www.themorganproject.org/ United Healthcare Children’s Foundation – was created to improve the lives of children who need financial assistance to cover medical treatment in all 50 states. www.uhccf.org/Schooling
504 and IEP Plan Information State Resource Sheets for Disability Related Issues www.nichcy.org/states.htm Special Education & Rehabilitative Services Legislation (IDEA & The Rehabilitation Act) www.ed.gov/Legal and Advocacy
The National Organization for Rare Disorders (NORD) provides advocacy, education and other services to improve the lives of all people affected by rare diseases.
Rare Connect is a joint collaboration between EURORDIS and NORD (the US National Organization for Rare Disorders). Rare Connect is an online social network for patients and families to connect with each other, to offer support and to share vital experiences on aspects of living with a rare disease.
Global Genes Project is one of the leading rare and genetic disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare and genetic disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™. What began as a grassroots movement in 2009 with a few rare disease parent advocates and foundations has grown to over 500 global organizations.
Insurance
Insurance Claims Denials & Appeals
Dealing with denied medical insurance claims? Complex Child E-Magazine has a great article “Writing Winning Insurance Appeal Letters” – tips, etc. can be downloaded as pdf file! www.articles.complexchild.com/Patient Advocate Foundation (PAF)
The PAF mission is to provide effective mediation and arbitration services to assist patients w/ chronic or life-threatening illnesses with Medical Debt Crisis, Insurance Access Issues & Job Retention Issues. A good resource! www.patientadvocate.orgFor access/approval related to IVIG
IGLiving Magazine is an online & print magazine for the IVIG community – www.igliving.com — Kris McFalls, Patient Advocate External Insurance Appeals Medical Insurance Issues? Appealing Claims? Know the contact information for the Insurance Commissioner’s Office for your state – the regulatory office for insurance – and the laws for your state. www.naic.org/Other helpful Insurance Links
Connecting Kids to Insurance Coverage — www.insurekidsnow.gov/ “Your Health Plan & HIPPA…Making the Law Work for You” — it’s more than simply a privacy law — www.dol.gov/Changes in Healthcare Law
Key provisions in health care reform went into effect recently. Do you know how the new laws will impact you & your family? www.kaiserhealthnews.org/Help with Medical Bills
Genome.gov has a webpage listing helpful web links for “Assistance with Paying for Medical Care & Procedures”, “Financial Aid for Medical Treatments”, “Assistance for Paying for Medications”, “Assistance for Insurance Premiums”. www.genome.gov/Helpful Apps
Siezure Tracker is an App that allows one to record and keep a diary of seizures. Many families adapt it to track AHC episodes and note their characteristics.If you have links that are valuable to your care, please share!
