People with Muscular Dystrophy in New York can access federal and state benefits, including SSI/SSDI, Medicaid waivers, and ABLE accounts. These programs help cover medical care, daily living costs, and long-term support.
People with Muscular Dystrophy may qualify for federal benefits if their condition limits their ability to work. The Social Security Administration (SSA) offers Supplemental Security Income (SSI) for low-income individuals and Social Security Disability Insurance (SSDI) for those with a work history. To qualify, your disability must be expected to last at least 12 months or result in death. SSA uses a medical guide called the Blue Book to check if your condition meets the criteria. Muscular Dystrophy is listed in Section 11.13, so most people with this diagnosis will qualify if they meet the medical and financial rules [^1].
In New York, people with Muscular Dystrophy can get extra help through state programs. The New York State Office for People With Developmental Disabilities (OPWDD) runs Medicaid waivers that pay for home care, therapy, and other supports. To qualify, you must be a New York resident, have a developmental disability (which includes Muscular Dystrophy), and meet income and asset limits. You may also qualify for other state programs like the Home and Community-Based Services (HCBS) waiver, which helps people live at home instead of in institutions. These programs can cover personal care, respite care, and assistive technology [^2].
ABLE accounts let people with Muscular Dystrophy save money without losing SSI or Medicaid benefits. You can use the account for qualified disability expenses like housing, education, and transportation. New York residents can open an ABLE account through the NY ABLE program. Contributions are limited to $16,000 per year, and the account balance cannot exceed $100,000 without affecting SSI benefits [^6].
To qualify for SSI, your monthly income must be below $914 for an individual and $1,371 for a couple in 2025. For SSDI, there is no strict income limit, but you must not be able to do substantial work. Medicaid income limits vary by program, but most require income below 138% of the federal poverty level. ABLE accounts do not count toward these limits as long as the balance is under $100,000 [^7].
You must report any changes in your income, assets, or living situation to avoid overpayments. If you get too much money, you may have to pay it back. Report changes to Social Security and OPWDD as soon as possible. Keep records of all reports and communications [^8].
Contact Social Security at 1-800-772-1213 or OPWDD at 1-866-922-4OPW (4679) for help with your application.
Muscular Dystrophy is a group of genetic diseases that cause muscle weakness and loss of muscle mass. It can affect mobility, breathing, and daily living. Most people with Muscular Dystrophy qualify for disability benefits.
You can apply for SSI/SSDI online at SSA.gov, by phone at 1-800-772-1213, or at a local Social Security office. You will need medical records and proof of income.
A Medicaid waiver is a program that pays for home and community-based services for people with disabilities. It helps people live at home instead of in institutions.
Contact the New York State Office for People With Developmental Disabilities (OPWDD) at 1-866-922-4OPW (4679) or visit their website. You will need to submit forms and documentation.
An ABLE account is a savings account for people with disabilities. You can use it for qualified disability expenses without losing SSI or Medicaid benefits.
In 2025, you can earn up to $914 per month as an individual and $1,371 as a couple and still get SSI. ABLE accounts do not count toward these limits if the balance is under $100,000.
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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Medicaid waivers can cover home care, therapy, personal care, respite care, assistive technology, transportation, and case management.
Yes, you must report any changes in your income, assets, or living situation to avoid overpayments. Report changes to Social Security and OPWDD as soon as possible.
Yes, you can work and still get SSI/SSDI. There are work incentives that let you keep benefits while you try to work. Talk to a benefits counselor for help.
You can get help from Social Security, OPWDD, or a local benefits counselor. They can help you fill out forms and answer questions.
