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Florida • Rare/Genetic
People with Rett Syndrome in Florida may qualify for federal and state disability benefits, including SSI, SSDI, Medicaid waivers, and new 2025 programs. These benefits help cover medical care, living expenses, and support independence.
To qualify for federal disability benefits with Rett Syndrome, you must meet strict medical and financial criteria. The Social Security Administration (SSA) considers Rett Syndrome a disabling condition if it causes marked and severe functional limitations. For Supplemental Security Income (SSI), your income and resources must be limited. For Social Security Disability Insurance (SSD), you must have a qualifying work history and be unable to work above the Substantial Gainful Activity (SGA) limit. In 2025, the SGA limit is $1,620 per month for non-blind individuals and $2,700 for blind individuals. Children with Rett Syndrome may qualify for SSI if their family meets income and resource limits. Adults may qualify for SSDI if they have enough work credits. Both programs require a medical determination of disability.
Citations: SSA Disability Qualification, SSA Benefits for Children with Disabilities
In Florida, individuals with Rett Syndrome may qualify for additional state programs and services. The Florida Department of Health's Division of Disability Determinations handles medical eligibility for federal disability programs. Florida also offers Medicaid waivers for people with disabilities, which can provide home and community-based services. A new 2025 bill, HB 1373, proposes a Medicaid buy-in program for working individuals with disabilities, allowing those with higher incomes to access affordable health coverage. This program is designed to help people with disabilities become more financially independent while maintaining essential health benefits. Florida also provides special needs shelters and resources for individuals with disabilities during emergencies.
Citations: SSA Disability Qualification, Florida Department of Health - People with Disabilities, HB 1373 - Medical Coverage Assistance Program
Citations: SSA Disability Qualification, SSA Benefits for Children with Disabilities
Citations: Florida Department of Health - People with Disabilities,
ABLE accounts allow people with disabilities to save money without losing benefits. In Florida, you can open an ABLE account to save for disability-related expenses. The account is tax-free and does not count toward SSI or Medicaid resource limits. You can use the funds for qualified disability expenses, such as education, housing, transportation, and personal support services. To open an ABLE account, visit the Florida ABLE website or contact a financial institution that offers ABLE accounts.
Citations: Florida ABLE Account
In 2025, the SGA limit for non-blind individuals is $1,620 per month and $2,700 for blind individuals. For SSI, the income and resource limits are based on federal guidelines and may change annually. The SSI Income Estimator can help you determine if you qualify for SSI based on your income and resources. For Medicaid, the income and resource limits vary by program and may be higher for Medicaid waivers.
Citations: SSA Benefits for Children with Disabilities
It is important to report any changes in income, resources, or living situation to the SSA and Medicaid to avoid overpayments. Overpayments can result in penalties or loss of benefits. If you receive an overpayment, contact the SSA or Medicaid to discuss repayment options. You can report changes online, by phone, or in person at a local office.
Citations: SSA Disability Qualification
Florida's new Medicaid buy-in program (HB 1373) helps working individuals with disabilities access affordable health coverage, even if their income exceeds traditional Medicaid limits. This program supports financial independence while maintaining essential health benefits.
Rett Syndrome is a rare genetic disorder that affects mostly girls, causing severe physical and cognitive disabilities. It is caused by a mutation in the MECP2 gene and typically appears in early childhood.
Your child may qualify for SSI if they have a severe impairment and your family meets income and resource limits. The SSA considers Rett Syndrome a disabling condition if it causes marked and severe functional limitations.
In 2025, the SGA limit is $1,620 per month for non-blind individuals and $2,700 for blind individuals. Earning above this limit may affect your eligibility for disability benefits.
The new Medicaid buy-in program (HB 1373) allows working individuals with disabilities to access affordable health coverage, even if their income exceeds traditional Medicaid limits. This program is designed to help people with disabilities become more financially independent.
To apply for Medicaid waivers in Florida, contact the Florida Department of Health or the Florida Agency for Persons with Disabilities. They can help you determine eligibility and guide you through the application process.
ABLE accounts allow people with disabilities to save money without losing benefits. The funds can be used for qualified disability expenses and do not count toward SSI or Medicaid resource limits.
Disclaimer: This guide is for informational purposes only and does not constitute legal or financial advice. Always consult with a qualified professional for personalized guidance.
Citations: Florida Department of Health - People with Disabilities, HB 1373 - Medical Coverage Assistance Program
Not reporting changes can result in overpayments, penalties, or loss of benefits. It is important to report any changes to the SSA and Medicaid to avoid these issues.
Adults with Rett Syndrome may qualify for SSDI if they have a qualifying work history and are unable to work above the SGA limit. They must also meet the medical criteria for disability.
Families can access resources from the Florida Department of Health, Florida Agency for Persons with Disabilities, and local disability advocacy organizations. These resources include educational information, support services, and emergency preparedness.
You can report changes to your benefits online, by phone, or in person at a local SSA or Medicaid office. It is important to report changes promptly to avoid overpayments or loss of benefits.
