Massachusetts offers both federal and state disability benefits and supports for people with Rett Syndrome. This guide details eligibility, application steps, program differences, income rules, and where to get help.
To qualify for Social Security Disability Insurance (SSDI), you generally need 40 work credits, with 20 earned in the last 10 years before your disability began[5]. For Supplemental Security Income (SSI), you must have low income and few resources, and your disability must be severe enough to prevent substantial work. The Social Security Administration (SSA) uses a medical guide (the Blue Book) to determine if Rett Syndrome, or a related condition, meets disability standards. If you’re under 18, you can apply for SSI under the "childhood disability" rules, which focus on how your condition affects daily activities compared to other children your age. SSDI does not have a resource limit, but SSI does—$2,000 for an individual, $3,000 for a couple (2025 figures may change slightly due to inflation).
In Massachusetts, eligibility for SSI and SSDI is reviewed by MassAbility Disability Determination Services (DDS)[2]. DDS uses a team of medical and mental health professionals to assess your condition based on medical records, school records, job history, and statements from caregivers. Massachusetts pays a small state supplement to the federal SSI benefit, so eligible residents receive slightly more than the base federal amount. DDS may request additional exams or information if your records are not complete. For Medicaid waivers (like Home and Community-Based Services, or HCBS), Massachusetts has specific eligibility criteria—often including a diagnosis of a developmental disability (like Rett Syndrome), functional limitations, and income/resource limits. State-specific programs may also have additional requirements, so check with the Massachusetts Executive Office of Health and Human Services for the latest details.
Start your application for SSI or SSDI online at ssa.gov, by phone at 1-800-772-1213 (TTY 1-800-325-0778), or at your local Social Security office. For Massachusetts-specific questions, contact MassAbility DDS by phone (Boston 617-727-1600, Worcester 508-752-5001) or visit their offices in Everett or Worcester[2]. Gather medical records, school reports, work history, and contact information for your doctors. Be prepared to describe how Rett Syndrome affects daily life. Apply for Medicaid separately through MassHealth if you need health coverage.
1. Gather Documents: Collect medical records, school reports, employment history, and information about household income and resources. 2. Start Your Application: Apply for SSI or SSDI online, by phone, or in person. For SSI, you cannot apply online if you are under 18 or have never applied before—call or visit an office. 3. Submit Evidence: MassAbility DDS will contact you to request more information if needed[2]. Provide contact details for all healthcare providers. 4. Review Process: DDS reviews your application using medical consultants and may schedule a consultative exam. 5. Decision: You’ll get a letter with the decision. If denied, you can appeal. 6. MassHealth/Medicaid: Apply separately through MassHealth for health coverage. 7. Follow Up: Report any changes in income, living situation, or medical condition promptly to avoid overpayments. 8. Explore Waivers: Once approved for Medicaid, ask about Home and Community-Based Services (HCBS) waivers for additional supports. 9. Consider an ABLE Account: If eligible, open an ABLE account to save for disability-related expenses without losing benefits.
The Social Security Disability Insurance (SSDI) program provides monthly payments to people with disabilities who have worked and paid into Social Security. The Supplemental Security Income (SSI) program helps people with limited income and resources, including children and adults with disabilities like Rett Syndrome. In 2025, the maximum federal SSI payment is $967 for an individual and $1,450 for a couple; these amounts increase annually with cost-of-living adjustments[1][3]. For 2025, SSDI payments will also increase by about 2.5% due to a COLA adjustment[1]. If you work while receiving benefits, the Substantial Gainful Activity (SGA) limit applies—exceeding it may affect eligibility. There are special work incentives for people who want to try working without losing benefits right away. Learn more at SSA.gov or your local Social Security office.
Massachusetts supplements the federal SSI payment, so eligible residents receive more than the basic federal rate. The state also has several Medicaid waivers (such as HCBS) that can provide in-home support, respite care, and other services for people with Rett Syndrome, if Medicaid-eligible. MassHealth is Massachusetts Medicaid and covers a broad range of health services. The state’s Disability Determination Services (DDS) handles SSI/SSDI eligibility reviews and may request additional exams or information[2]. Massachusetts also offers other supports for people with disabilities, including housing assistance, transportation services, and employment programs. For the most current information on state programs, contact the Massachusetts Executive Office of Health and Human Services or visit Mass.gov.
If you receive SSI or other means-tested benefits, you may qualify for an ABLE account. ABLE accounts allow people with disabilities to save up to $100,000 without counting against SSI asset limits. These accounts can be used for qualified disability expenses, such as healthcare, housing, education, and assistive technology. To qualify, your disability must have begun before age 26. Explore your options at the Massachusetts ABLE Savings Plan website; see our ABLE Accounts guide for details.
For SSI, income includes wages, Social Security, gifts, and even in-kind support (like free rent). Earned income is treated more favorably than unearned income. For 2025, the maximum federal SSI payment is $967 for an individual and $1,450 for a couple[3]. Massachusetts adds a small supplement. The SGA limit for 2025 (not yet finalized) is expected to be slightly higher than the 2024 limit of $1,470/month for non-blind individuals. Exceeding SGA may affect your SSDI benefits. Managing income and reporting changes is key to keeping your benefits—use our SSI Income Estimator tool to see how earnings affect your payment.
You must report changes in income, work status, living situation, or resources to the Social Security Administration and MassHealth. Failing to report can lead to overpayments—where you receive more benefits than you’re eligible for and must pay back. To avoid overpayments, report changes as soon as possible. If you get an overpayment notice, you can appeal or request a waiver. Our guide to Avoiding Overpayments & Reporting Changes explains your rights and steps to take.
If you need extra help because of Rett Syndrome, you can appoint a representative—like a family member or advocate—to assist you. You can also ask MassAbility DDS or a Social Security representative to help you complete forms or gather medical evidence.
SSI, SSDI, and other federal benefits will increase by about 2.5% in 2025 due to a cost-of-living adjustment (COLA). For SSI, the maximum payment is $967/month for an individual, with a small Massachusetts supplement on top. Report changes right away to avoid losing benefits[1][3].
Massachusetts adds a small supplement to federal SSI payments, so eligible residents get more than the base federal rate. This is on top of access to MassHealth and waiver programs for extra supports.
Yes, children with Rett Syndrome may qualify for SSI if their condition causes severe functional limitations and their family meets income and resource limits. SSDI is for adults (or sometimes for adult disabled children of insured parents). SSI is the main program for children with disabilities in low-income families.
The maximum federal SSI payment in 2025 is $967/month for an individual, with a small Massachusetts state supplement added[3]. Actual payments depend on income, living situation, and other resources. Use our SSI Income Estimator tool to estimate your payment.
SSI is for people with limited income and resources, while SSDI is for those who have worked and paid into Social Security. SSI has strict income and asset limits; SSDI does not. Many people with Rett Syndrome—especially children—rely on SSI. See our SSI vs SSDI guide.
Yes, but there are limits. For SSI, earned income reduces your benefit, but not dollar for dollar. For SSDI, earnings above the Substantial Gainful Activity (SGA) limit can affect benefits. Special work incentives allow you to try working without losing benefits immediately. See our SSI & SSDI Work Incentives guide.
Yes, MassHealth (Medicaid) is a separate application, but SSI recipients are usually automatically eligible. Others may need to apply and meet additional criteria. MassHealth offers waivers for extra services.
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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Medicaid waivers like HCBS pay for services not usually covered by regular Medicaid, such as in-home supports, respite care, and therapies. You must be Medicaid-eligible and meet waiver program criteria. See our Medicaid Waivers (HCBS) guide.
Report changes in income right away to avoid overpayments. Higher income may reduce or stop your SSI or Medicaid, but work incentives and reporting changes promptly can protect your benefits.
If denied, you can appeal within 60 days. Request a reconsideration first, then a hearing if needed. MassAbility DDS handles initial reviews in Massachusetts[2]. Keep all medical and school records for your appeal.
Yes, through an ABLE account. Up to $100,000 in an ABLE account does not count against SSI resource limits, but all spending must be for qualified disability expenses.
Contact MassAbility DDS, your local Social Security office, or a disability advocate. For Medicaid and waivers, start with MassHealth. For legal help, consider local legal aid organizations.
