Amyotrophic Lateral Sclerosis Benefits in Utah

To qualify for Social Security Disability Insurance (SSDI) in the U.S., you must have worked in jobs covered by Social Security, have a disability that prevents you from working for at least 12 months, and meet the work credit requirements (usually 20 credits in the last 10 years)[^1]. For Supplemental Security Income (SSI), you must have limited income and resources and meet the Social Security Administration’s definition of disability[^1].

ALS is considered a severe disability and is included in the Compassionate Allowances program, which can speed up the application process and approval for benefits[^1].

• SSDI: Paid to those who have paid Social Security taxes and become disabled.
• SSI: Paid to those with limited income and resources who are disabled, blind, or age 65+.
• Disabled Adult Child (DAC): Adults with a disability that began before age 22 may be eligible based on a parent’s work record[^1].

In Utah, people with ALS may qualify for Medicaid if they meet income and disability requirements. Utah’s Medicaid Aged, Blind or Disabled Programs provide medical assistance to those who are disabled, including those receiving SSI or SSDI benefits[^4]. If you are not on SSI or SSDI, the State Medicaid Medical Review Board can determine disability without considering substantial gainful employment[^4].

Utah also offers Medicaid waivers for home and community-based services, which can help people with ALS live independently[^4].

• Medicaid: Available to those with low income and a qualifying disability.
• Medicaid Waivers: Help with home care, personal care, and other services.
• State Disability Programs: Utah may have additional programs for people with disabilities, including those with ALS[^4].

• Check if you meet federal SSDI or SSI eligibility.
• Gather medical records and work history.
• Apply online at SSA.gov or at your local Social Security office.
• Apply for Utah Medicaid if you need health coverage.
• Report any changes in income or health to avoid overpayments.

• Step 1: Review eligibility for SSDI or SSI. ALS is a qualifying disability, so you may be approved quickly.
• Step 2: Gather documents, including medical records, proof of income, and work history.
• Step 3: Apply online at SSA.gov, by phone, or in person at a Social Security office. The Compassionate Allowances program can speed up approval for ALS.
• Step 4: If approved, you will receive a decision letter. If denied, you can appeal.
• Step 5: Apply for Utah Medicaid if you need health coverage. You can apply online at Medicaid.utah.gov or through your local Department of Workforce Services office.
• Step 6: Report any changes in income, employment, or health to the Social Security Administration and Medicaid to avoid overpayments.
• Step 7: Explore Medicaid waivers and ABLE accounts for additional support[^4][^1].

• SSDI: Monthly cash benefits for those who have paid Social Security taxes and become disabled.
• SSI: Monthly cash benefits for those with limited income and resources who are disabled, blind, or age 65+.
• Medicare: Health insurance for those who receive SSDI for 24 months.
• Medicaid: Health coverage for those with low income and a qualifying disability.
• ABLE Accounts: Tax-advantaged savings accounts for people with disabilities.
• Compassionate Allowances: Fast-tracked approval for certain severe disabilities, including ALS[^1].

• Utah Medicaid Aged, Blind or Disabled Programs: Medical assistance for those who are disabled, including those with ALS. You may qualify if you receive SSI or SSDI, or if the State Medicaid Medical Review Board determines your disability[^4].
• Medicaid Waivers (HCBS): Home and community-based services for people with disabilities, including those with ALS. These waivers can help with home care, personal care, and other services[^4].
• Utah ABLE Accounts: Tax-advantaged savings accounts for people with disabilities, including those with ALS[^6].
• State Disability Programs: Utah may have additional programs for people with disabilities, including those with ALS[^4].

ABLE accounts allow people with disabilities to save money without losing eligibility for benefits like SSI and Medicaid. In 2025, you or others can contribute up to $19,000 per year to an ABLE account (or $34,650 if you work and your employer doesn’t contribute to your retirement account)[^6].

• ABLE accounts can be used for qualified disability expenses, such as housing, education, and transportation.
• Utah offers ABLE accounts through the Utah ABLE Program[^6].

• SSDI: No strict income limit, but you must not earn more than the Substantial Gainful Activity (SGA) limit. In 2025, the SGA limit is $1,620/month for non-blind individuals and $2,700/month for those who are blind[^3][^5].
• SSI: Income and resource limits apply. In 2025, the federal SSI payment is $943/month for an individual and $1,415/month for a couple. Utah may have additional state supplements[^1].
• Medicaid: Income and resource limits vary by program. For Utah Medicaid Aged, Blind or Disabled Programs, income limits are based on federal poverty guidelines[^4].

It is important to report any changes in income, employment, or health to the Social Security Administration and Medicaid to avoid overpayments. If you receive an overpayment, you may be required to repay the excess amount. You can report changes online, by phone, or in person[^1].

• Report changes in income or employment to avoid losing benefits.
• Report changes in health or disability status to ensure you receive the correct amount of benefits.
• If you receive an overpayment, contact the Social Security Administration or Medicaid to discuss repayment options[^1].

• Utah Department of Workforce Services
  Phone: 866-275-7348

  Website

  For disability and workforce services.
• Utah Medicaid
  Phone: 800-662-9651

  Website

  For Medicaid eligibility and programs.
• Social Security Administration
  Phone: 800-772-1213

  TTY: 800-325-0778

  Website

  For SSDI and SSI benefits.

• What is the SGA limit for SSDI in Utah in 2025?

  The SGA limit for SSDI in Utah in 2025 is $1,620 per month for non-blind individuals and $2,700 per month for those who are blind. Earning above this limit may affect your benefits[^3][^5].

• Can I get Medicaid if I have ALS in Utah?

  Yes, people with ALS in Utah may qualify for Medicaid if they meet income and disability requirements. Utah’s Medicaid Aged, Blind or Disabled Programs provide medical assistance to those who are disabled, including those with ALS[^4].

• How do I apply for SSDI with ALS in Utah?

  You can apply for SSDI online at SSA.gov, by phone, or in person at a Social Security office. ALS is a qualifying disability and may be approved quickly through the Compassionate Allowances program[^1].

• What are Medicaid waivers in Utah?

  Medicaid waivers in Utah provide home and community-based services for people with disabilities, including those with ALS. These waivers can help with home care, personal care, and other services[^4].

• Can I work while receiving SSDI in Utah?

  Yes, you can work while receiving SSDI, but your earnings must not exceed the SGA limit. In 2025, the SGA limit is $1,620/month for non-blind individuals and $2,700/month for those who are blind[^3][^5].

• What is an ABLE account in Utah?

  An ABLE account in Utah is a tax-advantaged savings account for people with disabilities, including those with ALS. You or others can contribute up to $19,000 per year (or $34,650 if you work and your employer doesn’t contribute to your retirement account)[^6].