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Illinois • Rare/Genetic
People with Ehlers-Danlos Syndrome in Illinois may qualify for federal and state disability benefits, including SSI, SSDI, Medicaid, and work incentives. This guide explains eligibility, how to apply, and what programs are available.
To qualify for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) with Ehlers-Danlos Syndrome, you must have a medical condition that causes marked and severe functional limitations and is expected to last at least 12 months or result in death. For SSDI, you need enough work credits (usually 40, with 20 in the last 10 years). For SSI, your income and resources must be below strict limits. In 2025, the maximum SSI payment is $967/month for individuals and $1,450/month for couples. SSI also considers household income and resources for children living at home. [^1][^5]
The Social Security Administration (SSA) uses a list of impairments, but Ehlers-Danlos Syndrome is not listed. You must prove your condition meets the functional criteria for disability. Medical records, doctor statements, and evidence of how your symptoms limit daily activities are critical. [^9]
In Illinois, adults with Ehlers-Danlos Syndrome may qualify for Medicaid through the Health Benefits for Workers with Disabilities (HBWD) program if they are working and have countable income up to $4,393/month (single) or $5,962/month (couple). HBWD lets you keep Medicaid while working, and allows up to $25,000 in assets. [^2]
Children with Ehlers-Danlos Syndrome may qualify for SSI if their condition causes marked and severe limitations and household income/resources are within limits. Illinois also offers Medicaid waivers for home and community-based services, which can help with care needs. [^2][^6]
If you are approved for SSDI or SSI, you may also qualify for SNAP (food assistance) and other state programs. [^6]
IL ABLE accounts let people with disabilities save up to $18,000 per year without losing SSI or Medicaid benefits. The account can be used for qualified disability expenses like education, housing, and transportation. [^8]
For SSI in 2025, the maximum payment is $967/month for individuals and $1,450/month for couples. For HBWD Medicaid, the income limit is $4,393/month (single) or $5,962/month (couple). [^1][^2]
You must report changes in income, resources, or living situation to Social Security and DHS. Failing to report can result in overpayments and penalties. If you get an overpayment, you can request a waiver or set up a repayment plan. [^6]
Contact the Illinois Department of Human Services or a disability attorney for help with your application. You can also call the Social Security Administration at 1-800-772-1213.
Yes, if your Ehlers-Danlos Syndrome causes marked and severe functional limitations and is expected to last at least 12 months. You must provide medical evidence to support your claim. [^9]
The maximum SSI payment in Illinois in 2025 is $967 per month for an individual and $1,450 per month for a couple. [^1][^7]
Yes, Illinois has work incentives like the Health Benefits for Workers with Disabilities (HBWD) program. You can work and keep Medicaid if your income is below the program limits. [^2][^6]
You can apply for Medicaid through the Illinois Department of Human Services or the HBWD program. You will need to provide proof of disability, income, and resources. [^2][^6]
The Substantial Gainful Activity (SGA) limit in 2025 is $1,620 per month for non-blind individuals and $2,700 for blind individuals. Earning above this may affect your benefits. [^5]
Yes, if the child has marked and severe functional limitations and household income/resources are within SSI limits. SSI rules for children consider both the child's and family's income and resources. [^5]
Disclaimer: This guide is for informational purposes only and does not constitute legal or financial advice. Always consult with a qualified professional for your specific situation.
An ABLE account lets people with disabilities save money without losing SSI or Medicaid benefits. Funds can be used for qualified disability expenses. [^8]
Failing to report changes can result in overpayments, penalties, or loss of benefits. Always report changes in income, resources, or living situation. [^6]
It can take 3 to 6 months to get a decision on a disability claim. If denied, you can appeal within 60 days. [^6]
If your claim is denied, you can appeal within 60 days. Consider hiring a disability attorney for help with the appeal process. [^6]
