Understanding your benefits and coverage

What health and support benefits are available for people facing ALS?

Social Security Disability Insurance (SSDI)

Social Security Disability Insurance provides monthly benefits to eligible people who are unable to work because of a disability.

Most people who qualify for SSDI must wait five months before disability benefits can begin. That waiting period does not apply to people with ALS. Under the ALS Disability Insurance Access Act, people with ALS who qualify for SSDI can receive benefits without the standard five-month waiting period.

ALS is also included in the Social Security Administration’s Compassionate Allowances program, which identifies certain medical conditions for expedited processing of disability claims.

Medicare

Medicare provides federal health coverage to people age 65 and older and certain younger people with disabilities.

Typically, people under age 65 who become eligible for Medicare through SSDI must wait 24 months before Medicare coverage begins. People with ALS are exempt from this waiting period. For eligible people with ALS, Medicare coverage can begin in the same month SSDI benefits begin.

Medicaid

Medicaid provides health coverage to eligible people based on factors such as income, disability status, and other requirements. Because Medicaid is administered jointly by federal and state governments, eligibility, coverage, and available services vary by state.

Depending on where you live and your eligibility, Medicaid may help cover healthcare as well as long-term services and supports, including certain home- and community-based services.

A social worker at your ALS clinic can help you understand the programs available in your state and where to begin.

Veterans benefits

Veterans living with ALS may be eligible for healthcare, disability compensation, caregiver support, and other benefits through the U.S. Department of Veterans Affairs.

For eligible veterans, ALS is considered a presumptive service-connected condition, meaning they generally do not need to establish that their ALS was caused by their military service to qualify for disability benefits.

Additional support may be available based on individual circumstances, including caregiver programs and assistance with certain home or vehicle modifications.

Reviewing your existing coverage when faced with ALS

Federal programs aren’t the only resources that may be available to you. Understanding the coverage and benefits you already have can help you plan ahead and avoid sorting through the details when a need arises.

Consider reviewing:

• Health insurance: What durable medical equipment, therapies, specialists, and home health services are covered? What documentation or prior authorization may be required?
• Out-of-pocket costs: What are your deductible and annual out-of-pocket maximum?
• Employer benefits: Do you have short- or long-term disability coverage? What paid or unpaid leave options are available, including FMLA if you qualify?
• Life insurance: Does your policy include an accelerated death benefit or living benefit that may allow you to access a portion of the benefit during your lifetime?
• Continuing health coverage: If you stop working or lose employer-sponsored insurance, what options may be available for continuing coverage, including COBRA?

You don’t need to navigate all of this alone. A social worker at an ALS clinic can help you understand available benefits, identify programs you may qualify for, and connect you with additional resources.