Ehlers-Danlos Syndrome Benefits in New York

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].

• Gather medical records and work history.
• Visit the Social Security website or local office to apply for SSI/SSDI.
• For Medicaid waivers, contact your local Department of Social Services.
• For ABLE accounts, visit the New York ABLE website.
• Keep copies of all documents and follow up regularly[1][2].

• Step 1: Collect all medical records, including diagnosis, treatment plans, and doctor’s notes.
• Step 2: Apply for SSI/SSDI online at ssa.gov, by phone, or in person at a local Social Security office. You will need to provide personal information, work history, and medical evidence.
• Step 3: If denied, you can appeal the decision. Ask for a reconsideration and provide any new evidence.
• Step 4: For Medicaid waivers, contact your local Department of Social Services. They will help you apply and determine eligibility.
• Step 5: For ABLE accounts, visit the New York ABLE website and follow the instructions to open an account.
• Step 6: Keep all documents and follow up with agencies to check the status of your applications[1][2].

• SSI (Supplemental Security Income): Monthly cash payments for people with disabilities who have limited income and resources.
• SSDI (Social Security Disability Insurance): Monthly cash payments for people with disabilities who have worked and paid Social Security taxes.
• Medicaid: Health insurance for people with disabilities, low income, or both.
• Medicare: Health insurance for people with disabilities who have received SSDI for 24 months[1].

• Medicaid Waivers (HCBS): Help pay for home and community-based services for people with disabilities. These waivers can cover things like personal care, respite care, and supported employment.
• ABLE Accounts: Tax-advantaged savings accounts for people with disabilities. Funds can be used for education, housing, transportation, and other expenses without affecting SSI or Medicaid benefits.
• New York State Office for People With Developmental Disabilities (OPWDD): Provides support and services for people with developmental disabilities, including some with Ehlers-Danlos Syndrome[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].

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

  TTY: 1-800-325-0778

  Hours: 8:30am–5:00pm ET

  Website

  For SSI and SSDI questions
• New York State Department of Social Services
  Phone: 1-800-342-3009

  Hours: 8:30am–5:00pm ET

  Website

  For Medicaid and other state benefits

• What is Ehlers-Danlos Syndrome?

  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.

• Can I get SSI or SSDI for Ehlers-Danlos Syndrome?

  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.

• What are Medicaid waivers in New York?

  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.

• How do I apply for Medicaid waivers in New York?

  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.

• What is an ABLE account?

  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.

• How do I open an ABLE account in New York?

  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.