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New York • Neurodegenerative
People with Amyotrophic Lateral Sclerosis (ALS) in New York can access federal and state disability benefits, including Social Security, Medicaid, and support programs. This guide explains eligibility, how to apply, and key resources.
Amyotrophic Lateral Sclerosis (ALS) is a qualifying condition for Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). To qualify for SSDI, you must have worked and paid Social Security taxes. SSI is for those with limited income and resources. Both programs require medical proof of ALS. The Social Security Administration (SSA) reviews your medical records and work history. If approved, you may receive monthly payments and access to Medicare or Medicaid.
Source: SSA.gov (accessed 2025-11-06)
In New York, people with ALS may qualify for Medicaid, Medicaid waivers, and other state programs. The New York State Office for People With Developmental Disabilities (OPWDD) and the Department of Health offer services for people with disabilities. To qualify for Medicaid, you must meet income and asset limits. Medicaid waivers provide home and community-based services, such as personal care and respite care. New York also offers ABLE accounts for saving disability-related expenses. You may need to provide proof of ALS diagnosis and financial information.
Source: NY.gov (accessed 2025-11-06)
Source: SSA.gov (accessed 2025-11-06) Source: NY.gov (accessed 2025-11-06)
Source: SSA.gov (accessed 2025-11-06)
Source: NY.gov (accessed 2025-11-06) Source: NY.gov (accessed 2025-11-06)
ABLE accounts allow people with disabilities to save money for disability-related expenses without losing eligibility for SSI or Medicaid. In New York, you can open an ABLE account through the NY ABLE program. Contributions are tax-free, and withdrawals for qualified expenses are also tax-free. The account can be used for housing, education, transportation, and other disability-related expenses.
Source: NY.gov (accessed 2025-11-06)
Income limits for SSI and Medicaid vary based on household size and state rules. For SSI, the federal limit is $943 per month for an individual in 2025. For Medicaid, income limits depend on household size and state rules. ABLE accounts have a contribution limit of $18,000 per year in 2025.
Source: SSA.gov (accessed 2025-11-06) Source: NY.gov (accessed 2025-11-06)
If you receive more benefits than you are entitled to, you may have to repay the overpayment. Report any changes in your income, resources, or living situation to avoid overpayments. You can report changes online or by phone. If you have an overpayment, you can request a waiver or set up a repayment plan.
Source: SSA.gov (accessed 2025-11-06) Source: NY.gov (accessed 2025-11-06)
Contact your local Social Security office or the NY State of Health Marketplace for help with applications. Local agencies can also provide support and guidance.
Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. It leads to muscle weakness, paralysis, and eventually respiratory failure. ALS is also known as Lou Gehrig's disease.
Yes, ALS is a qualifying condition for Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). You must provide medical proof of ALS to qualify for benefits.
You can apply for SSDI or SSI online at SSA.gov. You will need your Social Security number, medical records, and work history. The SSA will review your application and medical records.
SSDI is based on work credits and medical eligibility. SSI is based on financial need and medical eligibility. Both programs provide monthly payments for people with disabilities.
A Medicaid waiver provides home and community-based services for people with disabilities. It allows you to receive services in your home or community instead of an institution.
An ABLE account is a tax-advantaged savings account for people with disabilities. It allows you to save money for disability-related expenses without losing eligibility for SSI or Medicaid.
Disclaimer: This guide is for informational purposes only. Always consult official sources for the most accurate and up-to-date information.
You can apply for Medicaid through the NY State of Health Marketplace. You will need proof of income, assets, and residency. The application can be completed online or by mail.
New York offers Medicaid waivers, ABLE accounts, OPWDD services, and Department of Health programs for people with ALS. Local agencies also provide transportation and respite care.
You can report changes in your income, resources, or living situation online or by phone. Reporting changes helps avoid overpayments and ensures you receive the correct benefits.
If you have an overpayment, you can request a waiver or set up a repayment plan. Contact the SSA or Medicaid agency for more information.
