For resources related to getting health care coverage – including insurance issues, medicare, medicaid, disability, social security, pre-existing condition insurance, etc., there are often many local organizations to help. Ask the social services department at your hospital about any area organizations or call NF Midwest for assistance. Also, if you are aware of a helpful organization in your area please share that information with us.
Insurance or Medical Coverage Help
Pre-Existing Insurance Plans
The official U.S. government site for Pre-Existing Insurance Plans. The Pre-Existing Condition Insurance Plan (PCIP) covers a broad range of health benefits, and won’t charge you a higher premium just because of your medical condition.
Affordable Care Act Information
Information and resources on the Affordable Care Act and how it may help you.
NORD Patient Assistance Services
Since 1987, NORD has administered Patient Assistance Programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford. Over the course of time NORD has expanded its services to offer financial assistance with insurance premiums and patient co-pay fees as well as assistance with reasonable and appropriate diagnostic testing expenses and travel to and consultation with, disease specialists that are not covered by a patient’s insurance plan. NORD also works in partnership with pharmaceutical and biotechnology companies as well as patient organizations to provide travel and lodging assistance for study participants enrolled in specific rare disease clinical trials.
Patient Advocate Foundation
Provides patients with arbitration, mediation and negotiation to settle issues with access to care, medical debt, and job retention related to their illness.
Social Security Help
Social Security Administration – Benefits for people with disabilities Link
Health and Disability Advocates
National organization based in Chicago, Illinois, that promotes income security, work and education opportunities and improves healthcare access and services for children, people with disabilities and low-income, older adults.
Social Security Disability Help
Social Security Disability Help provides information and assistance to individuals who are interested in filing a disability claim for Social Security Disability Insurance or Supplemental Security Income benefits.
Social Security Disability Resource Center
Helpful site by a former disability examiner for the social security administration. The goal of this site is to inform readers about how the disability process works.
Applying for Disability with Neurofibromatosis PDF
Services for Children
Insurance for Children
Covering Kids & Families is a national initiative of the Robert Wood Johnson Foundation (RWJF) focused on reducing the number of eligible but uninsured children and adults through enrollment in Medicaid or the State Children’s Health Insurance Program (SCHIP).
Easter Seals provides exceptional services, education, outreach, and advocacy so that people living with autism and other disabilities can live, learn, work and play in our communities. If your child needs services such as occupational, physical or speech therapy, Easter Seals may be able to help.
United Healthcare Children’s Foundation, Inc.
United Healthcare Children’s Foundation, Inc. may be able to help if your insurance is not covering a needed service or treatment for a child.