Fragile X Syndrome Benefits in California

Fragile X Syndrome is a genetic condition that can cause intellectual disability, developmental delays, and behavioral challenges. People with Fragile X Syndrome may qualify for federal disability programs such as Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). SSDI is for those who have worked and paid Social Security taxes. SSI is for low-income individuals with limited resources. Both programs require medical proof of disability and ongoing eligibility reviews. For more details, visit the Social Security Administration website.

• SSDI: Must have a qualifying work history and meet medical criteria.
• SSI: Must meet income and asset limits, and have a qualifying disability.
• Both programs require regular reporting of changes in income, resources, or living situation.

For more information, see the SSI vs SSDI guide and the SSI & SSDI Work Incentives guide.

In California, people with Fragile X Syndrome may qualify for State Disability Insurance (SDI) and Paid Family Leave (PFL) if they are unable to work due to their condition. SDI provides short-term wage replacement for non-work-related illness or injury, including conditions like Fragile X Syndrome. PFL allows time off to care for a seriously ill family member or bond with a new child. As of 2025, SDI and PFL benefits are 70–90% of wages, with a maximum weekly benefit of $1,681. There is no wage ceiling for contributions. Claims can be filed up to 30 days in advance. California also offers Medicaid waivers for home and community-based services, which can help with long-term care needs.

• SDI/PFL: Must be unable to work due to a qualifying condition.
• Medicaid Waivers: Must meet income and functional eligibility.
• ABLE Accounts: Must have a qualifying disability before age 26.

For more information, see the California Medicaid Waivers guide and the ABLE Accounts guide.

• Check if you qualify for SSDI, SSI, SDI, or PFL.
• Gather medical records and proof of income.
• Apply online or by phone through the Social Security Administration or California Employment Development Department (EDD).
• For Medicaid waivers, contact your local county social services agency.
• For ABLE accounts, apply through the California ABLE program.

• Step 1: Review eligibility for SSDI, SSI, SDI, PFL, Medicaid waivers, and ABLE accounts.
• Step 2: Gather required documents, including medical records, proof of income, and identification.
• Step 3: Apply for SSDI or SSI online at ssa.gov or by phone at 1-800-772-1213.
• Step 4: Apply for SDI or PFL online at edd.ca.gov or by phone at 1-800-480-3287.
• Step 5: For Medicaid waivers, contact your local county social services agency.
• Step 6: For ABLE accounts, apply online at calable.org or by phone at 1-800-222-2228.
• Step 7: Submit all required forms and documents.
• Step 8: Follow up with agencies for updates and respond to any requests for additional information.
• Step 9: Report any changes in income, resources, or living situation to avoid overpayments.
• Step 10: Keep copies of all applications and correspondence for your records.

• Social Security Disability Insurance (SSDI): Provides monthly payments to people with disabilities who have a qualifying work history.
• Supplemental Security Income (SSI): Provides monthly payments to low-income individuals with disabilities.
• Medicaid: Provides health coverage to people with disabilities who meet income and asset limits.
• Medicare: Provides health coverage to people with disabilities who receive SSDI for 24 months.
• Medicaid Waivers: Provide home and community-based services to people with disabilities.
• ABLE Accounts: Allow people with disabilities to save money without losing eligibility for means-tested benefits.

• State Disability Insurance (SDI): Provides short-term wage replacement for non-work-related illness or injury, including Fragile X Syndrome. Benefits are 70–90% of wages, up to $1,681 per week in 2025. No wage ceiling for contributions.
• Paid Family Leave (PFL): Allows time off to care for a seriously ill family member or bond with a new child. Benefits are 70–90% of wages, up to $1,681 per week in 2025. No wage ceiling for contributions.
• Medicaid Waivers: Provide home and community-based services for people with disabilities, including those with Fragile X Syndrome. Services may include personal care, respite care, and supported employment.
• California ABLE Program: Allows people with disabilities to save money in a tax-advantaged account for disability-related expenses.
• In-Home Supportive Services (IHSS): Provides in-home care for people with disabilities who need assistance with daily living activities.
• Regional Centers: Provide services and support for people with developmental disabilities, including Fragile X Syndrome.

The California ABLE program allows people with disabilities to save money in a tax-advantaged account for disability-related expenses. To qualify, you must have a qualifying disability before age 26. The account can be used for expenses such as education, housing, transportation, employment training, and personal support services. There are annual and lifetime contribution limits. For more information, visit the California ABLE program website.

For SSI, the federal income limit is $943 per month for an individual in 2025. For SSDI, there is no income limit, but you must be unable to work due to your disability. For Medicaid, income limits vary by program and household size. For ABLE accounts, there are no income limits, but there are annual and lifetime contribution limits. For more information, see the SSI Income Estimator tool.

It is important to report any changes in income, resources, or living situation to avoid overpayments. Overpayments can result in penalties or loss of benefits. For more information, see the Avoiding Overpayments & Reporting Changes guide.

• California Employment Development Department (EDD)
  Phone: 1-800-480-3287

  Website

  For SDI and PFL benefits
• Social Security Administration
  Phone: 1-800-772-1213

  Website

  For SSDI and SSI benefits
• California Department of Social Services
  Phone: 1-800-222-2228

  Website

  For ABLE accounts and IHSS

• What is Fragile X Syndrome?

  Fragile X Syndrome is a genetic condition that causes intellectual disability, developmental delays, and behavioral challenges. It is the most common inherited cause of intellectual disability.

• Can people with Fragile X Syndrome get disability benefits in California?

  Yes, people with Fragile X Syndrome may qualify for SSDI, SSI, SDI, PFL, Medicaid waivers, and ABLE accounts in California. Eligibility depends on income, resources, and functional needs.

• How do I apply for SSDI or SSI in California?

  You can apply for SSDI or SSI online at ssa.gov or by phone at 1-800-772-1213. You will need to provide medical records and proof of income.

• What is the maximum weekly benefit for SDI in California in 2025?

  The maximum weekly benefit for SDI in California in 2025 is $1,681. Benefits are 70–90% of wages, with no wage ceiling for contributions.

• Can I file for SDI or PFL in advance in California?

  Yes, you can file for SDI or PFL up to 30 days in advance of your expected first day of leave. The EDD will begin payment within 14 days of receipt of the claim or the date the claim begins.

• What is a Medicaid waiver in California?

  A Medicaid waiver in California provides home and community-based services for people with disabilities, including those with Fragile X Syndrome. Services may include personal care, respite care, and supported employment.