Amyotrophic Lateral Sclerosis Benefits in Illinois

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].

• Contact Social Security for SSDI or SSI: 1-800-772-1213.
• Apply for Medicaid waivers through the Illinois Department of Human Services.
• Learn about ABLE accounts for saving without losing benefits.
• Use the SSI Income Estimator to check eligibility.
• Report changes in income or health to avoid overpayments.

• Step 1: Gather medical records and proof of diagnosis for ALS.
• Step 2: Apply for SSDI or SSI online, by phone (1-800-772-1213), or in person at a Social Security office. ALS is a Compassionate Allowance, so approval is fast[5].
• Step 3: Apply for Medicaid waivers through the Illinois Department of Human Services. The PD waiver is for those under 60 at risk of nursing facility placement[1].
• Step 4: Explore ABLE accounts for saving for disability-related expenses. These accounts do not affect SSI or Medicaid eligibility[8].
• Step 5: Report any changes in income, work, or health to Social Security and Medicaid to avoid overpayments[4].
• Step 6: Contact local agencies for help with housing, transportation, and other needs[7].

• Social Security Disability Insurance (SSDI): Monthly payments for those who worked and paid Social Security taxes.
• Supplemental Security Income (SSI): Monthly payments for those with limited income and resources.
• Medicare: Health insurance for those on SSDI after 24 months.
• Medicaid: Health coverage for those with low income and resources.
• Survivors Benefits: For surviving spouses with ALS if they meet age and disability criteria[5].

• Persons with Disabilities (PD) Waiver: Provides home and community-based services for those under 60 at risk of nursing facility placement. Services include personal care, home modifications, and respite care[1].
• Health Benefits for Workers with Disabilities (HBWD): Allows people with disabilities to keep Medicaid while working, with income limits[4].
• Benefit Access Program: Free transit for seniors (65+) and disabled individuals (16+), with income limits[7].
• ABLE Accounts: Tax-advantaged savings accounts for disability-related expenses, preserving eligibility for SSI and Medicaid[8].

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].

• Social Security Administration
  Phone: 1-800-772-1213

  TTY: 1-800-325-0778

  Website

  Apply for SSDI, SSI, and survivors benefits.
• Illinois Department of Human Services
  Phone: 1-800-843-6154

  Website

  Apply for Medicaid waivers and other state benefits.

• Does ALS qualify for expedited Social Security benefits?

  Yes, ALS is a Compassionate Allowance, so Social Security fast-tracks applications. Approval is quick, and benefits start right away after diagnosis[5].

• What Medicaid waivers are available for ALS in Illinois?

  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].

• Can I work while receiving SSI or SSDI with ALS?

  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].

• How do I apply for Medicaid waivers in Illinois?

  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].

• What is an ABLE account and how does it help with ALS?

  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].

• Are there income limits for SSI and Medicaid in Illinois?

  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].