People with Amyotrophic Lateral Sclerosis (ALS) in Illinois can access federal and state benefits, including Social Security Disability Insurance (SSDI), Supplemental Security Income (SSI), Medicaid waivers, and ABLE accounts. These programs help cover medical costs, daily living needs, and long-term care.
People with Amyotrophic Lateral Sclerosis (ALS) are automatically considered disabled for Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) after diagnosis. No waiting period applies for SSDI, and benefits start right away. To qualify, you must be unable to work for at least 12 months or have a terminal condition. SSI also requires limited income and resources. For 2025, the SGA limit is $1,620 per month for non-blind individuals and $2,700 for blind individuals[2][3].
Surviving spouses with ALS may qualify for survivors benefits if they are between 50 and 60 and meet the disability definition[5].
In Illinois, people with ALS may qualify for Medicaid waivers like the Persons with Disabilities (PD) waiver if they are under age 60 and at risk of nursing facility placement. Those who started services before age 60 can stay in the waiver after turning 60. The PD waiver helps cover home and community-based services for those who would otherwise need nursing care[1].
Illinois also offers the Health Benefits for Workers with Disabilities (HBWD) program, which helps people with disabilities keep Medicaid while working. Income limits apply, and eligibility is based on disability status and earnings[4].
ABLE accounts let people with ALS save money for disability-related expenses without losing SSI or Medicaid benefits. Contributions are tax-free, and funds can be used for housing, education, transportation, and more. Illinois offers the IL ABLE program for residents[8].
For 2025, the SSI maximum benefit is $967 per month for an individual and $1,450 for a couple[6]. The SGA limit is $1,620 per month for non-blind individuals and $2,700 for blind individuals[3]. Medicaid and HBWD have their own income limits, which vary by program and household size[4].
Report changes in income, work, or health to Social Security and Medicaid to avoid overpayments. Overpayments can result in benefit reductions or repayment. Use the SSI Income Estimator to check eligibility and report changes promptly[4].
Contact the Illinois Department of Human Services or a local Family Community Resource Center for help with Medicaid waivers and other benefits.
Yes, ALS is a Compassionate Allowance, so Social Security fast-tracks applications. Approval is quick, and benefits start right away after diagnosis[5].
The Persons with Disabilities (PD) waiver helps those under 60 at risk of nursing facility placement. It covers home and community-based services for people with ALS[1].
Yes, work incentives allow some to earn income while keeping benefits. The SGA limit for 2025 is $1,620 per month for non-blind individuals[2][3].
Contact the Illinois Department of Human Services. The PD waiver is for those under 60 at risk of nursing facility placement. Apply through DHS or a local Family Community Resource Center[1][4].
ABLE accounts let people with ALS save for disability-related expenses without losing SSI or Medicaid benefits. Illinois offers the IL ABLE program for residents[8].
Yes, SSI has strict income and resource limits. For 2025, the maximum SSI benefit is $967 per month for an individual[6]. Medicaid and HBWD have their own income limits, which vary by program and household size[4].
This guide is for informational purposes only and is not legal or financial advice. Always consult with a qualified professional for personalized guidance.
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Yes, surviving spouses with ALS may qualify for survivors benefits if they are between 50 and 60 and meet the disability definition[5].
The Benefit Access Program offers free transit for seniors (65+) and disabled individuals (16+), with income limits. Apply online or through local agencies[7].
Report changes to Social Security and Medicaid to avoid overpayments. Use the SSI Income Estimator to check eligibility and report changes promptly[4].
SSI is for those with limited income and resources. SSDI is for those who worked and paid Social Security taxes. ALS qualifies for both, with no waiting period for SSDI[5].
