People with Ehlers-Danlos Syndrome in New York can access federal and state disability benefits, including SSI, SSDI, Medicaid waivers, and ABLE accounts. These programs help cover medical costs, daily living expenses, and provide support for work and independence.
To qualify for federal disability benefits like SSI and SSDI, you must have a medical condition that prevents you from working and is expected to last at least 12 months or result in death. Ehlers-Danlos Syndrome can qualify if it severely limits your ability to work. SSI is for people with limited income and resources, while SSDI is for those who have worked and paid Social Security taxes. Both programs require medical evidence and a review of your work history and financial situation[1].
In New York, people with Ehlers-Danlos Syndrome may also qualify for state-specific programs like Medicaid waivers and ABLE accounts. Medicaid waivers help pay for home and community-based services for people with disabilities. To qualify, you must meet both federal and state eligibility rules, including income and asset limits. New York also offers ABLE accounts, which let individuals with disabilities save money without losing SSI or Medicaid benefits. You must have a qualifying disability that began before age 26[2].
ABLE accounts let people with disabilities save money without losing SSI or Medicaid benefits. In New York, you can open an ABLE account if you have a qualifying disability that began before age 26. Funds can be used for education, housing, transportation, and other expenses. There are annual and lifetime contribution limits, and the account grows tax-free[2].
For SSI, the federal income limit in 2025 is $943 per month for an individual and $1,415 for a couple. New York may have higher limits for Medicaid. For ABLE accounts, the annual contribution limit is $18,000, and the lifetime limit is $550,000[2].
If you receive too much money from SSI or SSDI, you may have to pay it back. Report any changes in income, resources, or living situation to Social Security right away. This helps avoid overpayments and keeps your benefits accurate[1].
Contact your local Department of Social Services or a disability advocate for help with applications and appeals.
Ehlers-Danlos Syndrome is a group of rare genetic disorders that affect connective tissue, causing joint hypermobility, skin fragility, and other symptoms. It can severely limit a person’s ability to work and perform daily activities.
Yes, if Ehlers-Danlos Syndrome prevents you from working and is expected to last at least 12 months or result in death. You must provide medical evidence and meet income and resource limits for SSI, or work history for SSDI.
Medicaid waivers help pay for home and community-based services for people with disabilities. They can cover personal care, respite care, and supported employment, helping people live independently.
Contact your local Department of Social Services to apply for Medicaid waivers. They will help you determine eligibility and guide you through the application process.
An ABLE account is a tax-advantaged savings account for people with disabilities. Funds can be used for education, housing, transportation, and other expenses without affecting SSI or Medicaid benefits.
Visit the New York ABLE website and follow the instructions to open an account. You must have a qualifying disability that began before age 26.
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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The federal income limit for SSI in 2025 is $943 per month for an individual and $1,415 for a couple. New York may have higher limits for Medicaid.
Report any changes in income, resources, or living situation to Social Security right away. This helps avoid overpayments and keeps your benefits accurate.
OPWDD provides support and services for people with developmental disabilities, including some with Ehlers-Danlos Syndrome. Services may include case management, supported employment, and residential support.
Yes, SSI and SSDI have work incentives that let you try working without losing benefits. You can earn a certain amount before benefits are reduced or stopped.
