The Genetic Information Nondiscrimination Act (GINA) is a federal law that protects individuals from genetic discrimination (i.e. being treated unfairly because of differences in their DNA that increase their risk for disease). Enacted in 2008, GINA protects from genetic discrimination in insurance and employment. Read more about GINA here.

The Affordable Care Act (ACA), passed in 2010, is a comprehensive healthcare reform law aimed at increasing access to affordable health insurance, reducing healthcare costs, and improving healthcare quality in the U.S. Key provisions include expanding Medicaid eligibility, establishing health insurance marketplaces, preventing insurance companies from denying coverage based on pre-existing conditions, and allowing young adults to stay on their parents’ insurance plans until age 26. The law also introduced mandates for individuals to obtain insurance and for employers to provide coverage, though the individual mandate penalty was later eliminated.

The RARE Act, or the “Rare Disease Advancement, Research, and Education Act,” focuses on enhancing the diagnosis, treatment, and care for individuals with rare diseases. It aims to increase federal funding for research, improve data collection on rare conditions, and promote education and awareness among healthcare professionals and the public. By fostering collaboration among government agencies, researchers, and patient advocacy groups, the act seeks to drive innovation and improve outcomes for those affected by rare diseases.

The Individuals with Disabilities Education Act (IDEA) is a federal law ensuring that children with disabilities have the right to a free and appropriate public education tailored to their individual needs. It mandates the development of an Individualized Education Program (IEP) for each eligible student, outlining specific educational goals and services. IDEA also emphasizes the importance of inclusion, encouraging students with disabilities to participate in general education settings alongside their peers whenever possible.

The Americans with Disabilities Act (ADA) is a landmark civil rights law enacted in 1990 that prohibits discrimination against individuals with disabilities in various aspects of public life, including employment, education, transportation, and public accommodations. It aims to ensure that people with disabilities have the same rights and opportunities as everyone else, promoting accessibility and inclusion. The ADA also requires reasonable accommodations to be made in the workplace and public spaces to support individuals with disabilities.

This federal civil rights law prohibits discrimination based on disability in programs and activities that receive federal financial assistance. It ensures that individuals with disabilities have equal access to education, employment, healthcare, and other services. Under Section 504, schools, employers, and public facilities must provide reasonable accommodations and modifications to prevent exclusion or unfair treatment of people with disabilities. This law laid the groundwork for later legislation like the Americans with Disabilities Act (ADA).

To apply for disability benefits in the U.S., individuals typically apply through the Social Security Administration (SSA). There are two primary disability programs. Social Security Disability Insurance (SSDI) is for individuals who have worked and paid Social Security taxes long enough to earn sufficient work credits. The applicant must have a qualifying disability. Supplemental Security Income (SSI) is based on financial need and provides benefits to disabled individuals with limited income and resources, regardless of work history.

It’s helpful to consult with a legal expert or disability advocate to assist with the application and appeals process, as many initial claims are denied

There is help available. UnitedHealthcare has grants available for children’s medical needs that are not covered under commercial insurance plans. To find out more visit UnitedHealthcare Children’s Foundation. You may also find help with resources to support children’s healthcare needs at the Children’s Health Fund or the Ronald McDonald House Charities for medical expenses.

Adults receiving treatment for chronic pain can apply for grants through the Patient Advocate Foundation Co-Pay Relief. This program provides financial assistance for out-of-pocket costs for individuals with chronic, life-threatening, or debilitating diseases. The Healthwell Foundation offers financial support for insurance co-pays, premiums, deductibles, and out-of-pocket expenses. Good Days is another organization that supports patients with chronic and life-altering diseases who need assistance with treatment costs.

Check your state and local resources for options like Medicaid for low-income individuals. Medicaid often covers co-pays. Your State Health Insurance Assistance Programs (SHIPs) also offer guidance on health insurance options and assistance.

Many pharmaceutical companies have patient assistance programs for medications they manufacture. Check their websites or speak with your healthcare provider for guidance. Needymeds.org may be able to point you in the right direction.

Continuing Education Resources for Students with Disabilities

• Scholarships for Students with Disabilities
• Resources for Students with Disabilities
• Career Guides for Students with Disabilities
• Nursing Scholarships For Students Living With Disabilities

Affordable Colleges Online

Affordable Colleges Online is a free community of resources and tools that span topics such as financial-aid and college savings strategies, online learning resources, affordability and scorecard rankings, opportunities for veterans and people with disabilities. With more adaptive technologies and progressive legislation, prospective college students with disabilities have countless resources available to make the transition to higher education less stressful.

Affordable Colleges Online offers a guide to available scholarships and financial aid for students with disabilities.

Travel Assistance for Disability Patients

Many organizations provide free or reduced travel assistance to those in need. Amtrak also provides discounts to travelers with disabilities.

• Air Care Alliance
• Lifestar
• Angel Flight
• Children’s Flight of Hope
• National Patient Travel Center
• Hope Flight Foundation

Children with Disabilities

View our parent resources for more information about assistance for children with disabilities.

To apply for medical disability benefits, individuals in the U.S. typically go through the Social Security Administration (SSA), as it handles both Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI), which are the two main programs providing benefits for medical disabilities. Here’s a step-by-step guide:

1. Determine Eligibility

• SSDI (Social Security Disability Insurance): For individuals who have worked and paid Social Security taxes long enough to earn work credits. They must also have a medical condition that meets SSA’s definition of a disability.
• SSI (Supplemental Security Income): For individuals with a qualifying disability and limited income/resources. It does not require prior work history.

2. Gather Necessary Documentation

You will need:

• Personal identification (Social Security number, birth certificate)
• Employment history (jobs held in the past 15 years)
• Financial information (bank account details, household income for SSI)
• Medical information:
  • Names and contact details of doctors, clinics, and hospitals
  • Medical records, treatment history, medications
  • Dates of all medical treatments related to the disability

3. Complete the Application

You can apply in several ways:

• Online: Through the SSA’s website at ssa.gov
• Phone: Call the SSA at 1-800-772-1213 to schedule an appointment or apply directly over the phone
• In Person: Visit your local Social Security office to apply

4. SSA Review and Disability Determination

• Once your application is submitted, the SSA will review it to ensure basic eligibility (e.g., work history for SSDI, income/resources for SSI).
• They will send your file to a state Disability Determination Services (DDS) office, which will assess your medical records and consult with your doctors to determine if your condition meets their definition of disability.

5. Receive a Decision

• The SSA will notify you of its decision, which could take several months. If approved, you’ll receive benefits, including possible retroactive payments back to the application or disability onset date.
• If denied, you can appeal the decision.

6. Appeals Process (if necessary)

If your claim is denied, you can appeal through these levels:

• Reconsideration: A different person reviews your case.
• Hearing: An administrative law judge reviews your case.
• Appeals Council: A review of the judge’s decision.
• Federal Court Review: If all previous appeals are denied, you may take your case to federal court.

It is often beneficial to have an attorney or disability advocate help with the process, especially in case of denials. They can help gather the necessary medical evidence and assist in the appeals process.