People with Ehlers-Danlos Syndrome (EDS)—a rare, genetic connective tissue disorder—may qualify for federal disability benefits (SSI/SSDI) and South Dakota Medicaid programs. This guide explains eligibility, how to apply, state-specific programs, work incentives, and managing income and resources.
To qualify for Social Security Disability Insurance (SSDI), you must have a medical condition—like Ehlers-Danlos Syndrome—that prevents you from working for at least 12 months, and you must have earned enough work credits through Social Security taxes. The number of credits needed depends on your age, with most adults needing about 40 credits—20 earned in the last 10 years before your disability begins.[3][4][6] Supplemental Security Income (SSI) is for people with limited income and resources, regardless of work history, but you must still meet SSA’s strict medical criteria for disability. Both programs require detailed medical evidence showing your EDS severely limits your ability to work.[3][4] For 2025, the Substantial Gainful Activity (SGA) limit for SSDI is $1,620/month for non-blind applicants, and $2,700/month for those who are blind.[4]
State-specific information is limited; start here: South Dakota’s Medicaid program includes standard coverage for those who qualify, and the Medicaid for Workers with Disabilities program is available for employed individuals with significant disabilities, though covered services are mainly targeted at chronic renal failure.[5] For SSI recipients, specific state rules may apply to assets exempted for work goals (like Plan for Achieving Self-Support) or deductions for impairment-related work expenses. The South Dakota Benefits Specialist Network offers local guidance; their materials confirm that SSI and SSDI rules are primarily federal, but they can help navigate state-level benefits like Medicaid and work incentives.[2] If you need help, contact your local Human Services office.
The best way to apply for SSI or SSDI is online at ssa.gov, by phone, or in person at your local Social Security office. South Dakota residents can also contact the South Dakota Benefits Specialist Network or local Human Services for help with Medicaid and waivers. Gather your medical records, work history, and financial information before you begin.[3]
The main federal benefits for people with Ehlers-Danlos Syndrome are Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). SSDI pays benefits to you and certain family members if you are “insured,” meaning you worked long enough and paid Social Security taxes. SSI pays benefits to disabled adults and children with limited income and resources, regardless of work history.[3][4] Federal rules apply equally in all states, including South Dakota. The Social Security Administration uses the same medical criteria nationwide. Both programs have work incentives, such as allowing deductions for impairment-related work expenses and continued Medicaid coverage through Section 1619(b) if you earn too much for SSI cash but remain medically disabled.[2][4] SSDI recipients become eligible for Medicare after 24 months.[4]
South Dakota Medicaid covers doctor visits, hospital care, and medications for those who qualify based on income and disability status.[5] The Medicaid for Workers with Disabilities program provides coverage for employed individuals with significant disabilities, though special services are mainly for chronic renal failure, not specifically EDS.[5] Home and Community Based Services (HCBS) waivers may be available for extra support, but details depend on current state funding and eligibility guidelines—contact the Department of Human Services for the latest information. South Dakota does not have a specific Medicaid waiver for Ehlers-Danlos Syndrome, so advocacy and case-by-case assessment are important. The South Dakota Benefits Specialist Network offers local help with understanding benefit rules and applications.[2]
ABLE accounts let people with disabilities save money without affecting eligibility for SSI and Medicaid. These accounts can help cover qualified disability expenses. South Dakota follows federal ABLE rules, so you can open an account through any state’s ABLE program.
For SSDI in 2025, the Substantial Gainful Activity limit is $1,620/month for non-blind applicants and $2,700/month for blind applicants. If you earn over these amounts, you may not qualify. For SSI, income and asset limits are much lower, and most unearned income and savings (over $2,000 for an individual, $3,000 for a couple) count against eligibility.[4] However, South Dakota allows deductions for work-related expenses and may exempt resources set aside under a Plan for Achieving Self-Support.[2]
You must promptly report any changes in income, resources, living situation, or medical improvement to Social Security and South Dakota Department of Social Services. Failing to do so can lead to overpayments, which you may have to pay back. If your benefits are stopped because you went back to work, you have 60 months to request expedited reinstatement if your disability returns.[2]
The South Dakota Benefits Specialist Network offers free, expert help navigating SSI, SSDI, and Medicaid—especially if you have a rare or complex condition like Ehlers-Danlos Syndrome. Call 1-800-224-5336 or visit their website for assistance.[2]
Yes, both SSI and SSDI have work incentives. You can earn up to a certain amount (SGA) and still receive benefits. Some income and expenses may not count, and continued Medicaid may be available if you earn over the SSI limit but remain disabled.[2][4]
South Dakota’s Medicaid waivers focus mainly on specific conditions like chronic renal failure. There is no waiver specifically for EDS, but you may qualify for standard Medicaid or HCBS based on medical and financial need—ask your caseworker for details.[5]
Apply online at ssa.gov, by phone, or in person. Provide detailed medical records showing your diagnosis and limitations. SSI requires proof of limited income and resources. Consider getting help from the South Dakota Benefits Specialist Network if you need guidance.[3][2]
You have the right to appeal. Many people are denied at first but win on appeal. Consider contacting a disability lawyer or advocate for help with your case.
Yes, through an ABLE account, which allows savings up to $100,000 without affecting SSI eligibility. ABLE funds can pay for qualified disability expenses.
No. The SSA must find your EDS prevents you from working for at least 12 months. Detailed medical proof is required.
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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SSDI is based on your work history and Social Security taxes paid. SSI is for people with limited income and resources, regardless of work history. Both require meeting SSA’s disability criteria.[3][4]
The process can take several months. Initial decisions usually take 3 to 5 months. Appeals can take much longer.
Most programs are general (Medicaid, SSI, SSDI), not disease-specific. Advocacy is important to access services.
SSI still uses the federal income and resource limits. The state does not add to these amounts, but may exempt certain funds set aside for work goals.
