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Kentucky • Rare/Genetic
People in Kentucky with Ehlers-Danlos Syndrome may qualify for federal and state disability benefits, including SSI, SSDI, Medicaid, and work incentives. This guide explains eligibility, how to apply, and resources for support.
To qualify for federal disability benefits like SSI or 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 (EDS) can qualify if it causes severe pain, joint instability, or other disabling symptoms that limit your ability to work or do daily activities. For SSDI, you need enough work credits (usually 40, with 20 in the last 10 years). For SSI, your income and resources must be low. Children with EDS may also qualify if their condition seriously limits their activities. The Social Security Administration (SSA) reviews medical records and work history to decide eligibility. In 2025, the Substantial Gainful Activity (SGA) limit is $1,620 per month for non-blind individuals and $2,700 for blind individuals. If you earn more than this, you may not qualify for SSDI. SSI has a monthly payment limit of $914 in 2025 for individuals. If you have EDS and are unable to work, you may qualify for these benefits.
In Kentucky, people with Ehlers-Danlos Syndrome may qualify for state-specific programs like Medicaid, Medicaid waivers, and ABLE accounts. Medicaid provides health coverage for people with low income and disabilities. Kentucky also offers Medicaid waivers for home and community-based services (HCBS), which can help with therapies, personal care, and other supports. ABLE accounts allow you to save money without losing benefits. Kentucky’s public assistance programs aim to help families with disabilities access food, cash, and medical assistance. If you are a young adult with EDS, you may stay on your parents’ health insurance until age 26, and coverage can be extended beyond 26 if you have a disability. Kentucky also has programs for children with disabilities, including early intervention and special education services. If you receive disability retirement benefits from Kentucky Public Pensions Authority, applying for Social Security disability or Workers’ Compensation may affect your benefits. Always report changes to avoid overpayments.
Step 1: Collect all medical records related to Ehlers-Danlos Syndrome, including doctor’s notes, test results, and treatment plans.
Step 2: Gather proof of income, resources, and work history.
Step 3: Visit the SSA website (ssa.gov) or call 1-800-772-1213 to start your SSI/SSDI application. You can also apply in person at a local SSA office.
Step 4: Complete the application, providing detailed information about your condition and how it affects your ability to work.
Step 5: Apply for Kentucky Medicaid online at healthcare.gov or through your local Department for Community Based Services. You may also qualify for Medicaid waivers for home and community-based services.
Step 6: Contact Centauri Health Solutions for help with SSI/SSDI applications. They can guide you through the process and answer questions.
Step 7: Explore ABLE accounts for saving money without losing benefits. Visit the Kentucky ABLE website for more information.
Step 8: Report any changes in your condition, income, or employment to avoid overpayments.
Step 9: Keep copies of all applications and correspondence for your records.
Step 10: Follow up with SSA and Kentucky agencies to check the status of your applications.
Supplemental Security Income (SSI): Provides monthly cash payments to people with disabilities and low income. In 2025, the maximum is $914 per month.
Social Security Disability Insurance (SSDI): Provides monthly payments to people with disabilities who have worked and paid Social Security taxes. Payment amounts vary based on work history.
Medicare: Health insurance for people with disabilities who receive SSDI after a 24-month waiting period.
Medicaid: Health coverage for people with disabilities and low income. You may qualify for both Medicare and Medicaid.
Work Incentives: Programs that help you keep benefits while trying to work, such as the Trial Work Period and Expedited Reinstatement.
Kentucky Medicaid: Health coverage for people with disabilities and low income. You can apply online at healthcare.gov or through your local Department for Community Based Services.
Medicaid Waivers (HCBS): Programs that provide home and community-based services, such as personal care, therapies, and support for people with disabilities. These waivers can help you live independently.
Kentucky ABLE Accounts: Tax-advantaged savings accounts for people with disabilities. You can save money without losing benefits.
Kentucky Transitional Assistance Program (K-TAP): Monthly cash benefits for families with children, including those with disabilities.
Kentucky Public Pensions Authority: Disability retirement benefits for public employees with disabilities.
Kentucky ABLE accounts allow people with disabilities to save money without losing benefits like SSI or Medicaid. You can use the funds for qualified disability expenses, such as education, housing, transportation, and personal support. To open an ABLE account, visit the Kentucky ABLE website and follow the application instructions. There are annual and lifetime contribution limits, but the funds grow tax-free. ABLE accounts can help you plan for the future and maintain financial independence.
For SSI in 2025, the maximum monthly payment is $914 for individuals. Your income and resources must be below certain limits to qualify. For SSDI, there is no income limit, but your earnings must be below the Substantial Gainful Activity (SGA) limit of $1,620 per month (or $2,700 if you are blind). If you earn more than this, you may not qualify for SSDI. Medicaid income limits vary based on household size and other factors. Check with your local Department for Community Based Services for specific limits.
It is important to report any changes in your condition, income, or employment to avoid overpayments. If you receive more benefits than you are entitled to, you may have to repay the excess. Report changes to the Social Security Administration and Kentucky agencies as soon as possible. Keep records of all correspondence and applications. If you have questions about reporting changes, contact your local SSA office or Department for Community Based Services.
Centauri Health Solutions can help you apply for SSI or SSDI. Call them or visit their website for support.
Check the Social Security Administration and Kentucky agencies for updates on benefits and eligibility.
Yes, Ehlers-Danlos Syndrome can qualify for SSI or SSDI if it severely limits your ability to work or do daily activities. You must provide medical evidence and meet income and resource limits for SSI, or work credit requirements for SSDI. The Social Security Administration reviews your application and medical records to decide eligibility.
You can apply for Kentucky Medicaid online at healthcare.gov or through your local Department for Community Based Services. You will need to provide proof of income, resources, and medical records. Medicaid provides health coverage for people with disabilities and low income.
Medicaid waivers in Kentucky provide home and community-based services for people with disabilities, such as personal care, therapies, and support. These waivers can help you live independently and access necessary services. You can apply through your local Department for Community Based Services.
Yes, you can work while receiving SSI or SSDI in Kentucky. There are work incentives, such as the Trial Work Period and Expedited Reinstatement, that help you keep benefits while trying to work. If your earnings exceed the Substantial Gainful Activity limit, your benefits may be affected.
An ABLE account is a tax-advantaged savings account for people with disabilities. You can save money without losing benefits like SSI or Medicaid. Funds can be used for qualified disability expenses, such as education, housing, transportation, and personal support. Kentucky offers ABLE accounts through the state program.
Disclaimer: This guide is for informational purposes only. Always consult official sources for the most current information.
Kentucky Disability Resource Guide: Comprehensive guide to state and local resources for people with disabilities.
You must report any changes in your condition, income, or employment to the Social Security Administration and Kentucky agencies as soon as possible. This helps avoid overpayments and ensures you receive the correct amount of benefits. Keep records of all correspondence and applications.
Children with Ehlers-Danlos Syndrome may qualify for SSI, Medicaid, early intervention services, and special education. Kentucky offers programs to help families with children who have disabilities access necessary services and support.
Yes, you can receive both, but your Kentucky Public Pensions Authority benefits may be reduced if your combined income from Social Security and Workers’ Compensation exceeds 100% of your final rate of pay. Always report any changes to avoid overpayments.
For SSI in 2025, the maximum monthly payment is $914 for individuals. Your income and resources must be below certain limits. For SSDI, there is no income limit, but your earnings must be below the Substantial Gainful Activity limit of $1,620 per month (or $2,700 if you are blind). Medicaid income limits vary based on household size and other factors.
You can get help applying for benefits in Kentucky from Centauri Health Solutions, local Department for Community Based Services offices, or by calling the Social Security Administration at 1-800-772-1213. These agencies can guide you through the application process and answer questions.
