Williams Syndrome Benefits in Maine: 2025 Guide

• 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. SSDI is for those who have worked and paid Social Security taxes.
• Supplemental Security Income (SSI) is for people with limited income and resources, regardless of work history. Children and adults with Williams Syndrome may qualify if their condition meets SSA’s definition of disability.
• For children, benefits can continue past age 18 if the disability started before age 22 and the person is unmarried. Adults with a disability that began before age 22 may also qualify for benefits based on a parent’s work record.
• The Social Security Administration (SSA) defines disability as a condition that prevents substantial gainful activity and is expected to last at least 12 months or result in death.
• Williams Syndrome is considered a rare genetic disorder. If it causes significant limitations in daily living, it may meet SSA’s criteria for disability.

Source: SSA.gov, 2025-11-06

• In Maine, people with Williams Syndrome may qualify for state-specific programs such as the ABLE ME savings account, which allows tax-advantaged savings for disability-related expenses without losing eligibility for federal benefits like SSI or Medicaid.
• Maine’s ABLE program is open to residents with a qualifying disability, including those with Williams Syndrome, if they meet SSA’s definition of disability.
• Maine also offers Medicaid waivers for home and community-based services (HCBS), which can help cover costs for care, therapy, and support services.
• MainePERS administers a Disability Retirement Program for public employees who become unable to work due to a disability. This is separate from Social Security and has its own eligibility requirements.
• Vocational services and benefits counseling are available through MaineHealth and the Maine Department of Labor to help people with disabilities understand how work affects their benefits.

Source: Maine.gov, 2025-11-06, MainePERS, 2025-11-06, MaineHealth, 2025-11-06

• Gather medical records and proof of diagnosis for Williams Syndrome.
• Contact the Social Security Administration to apply for SSI or SSDI.
• Apply for Maine’s ABLE ME account if you want to save for disability expenses.
• Check eligibility for Maine Medicaid and HCBS waivers.
• Seek benefits counseling for help with work incentives and reporting changes.

Source: SSA.gov, 2025-11-06, Maine.gov, 2025-11-06

• Step 1: Get a formal diagnosis of Williams Syndrome from a qualified medical professional. Collect all medical records and documentation.
• Step 2: Contact the Social Security Administration (SSA) to apply for SSI or SSDI. You can apply online, by phone, or in person at a local SSA office. Provide all required medical and personal information.
• Step 3: If you qualify for SSI or SSDI, apply for Maine Medicaid and HCBS waivers. These programs can help cover medical and support costs.
• Step 4: Open an ABLE ME account through Bangor Savings Bank if you want to save for disability-related expenses. This account is tax-advantaged and does not affect eligibility for federal benefits.
• Step 5: If you are a public employee, check with MainePERS about the Disability Retirement Program.
• Step 6: Seek benefits counseling from MaineHealth or the Maine Department of Labor to understand how work affects your benefits and to avoid overpayments.
• Step 7: Report any changes in income, employment, or living situation to SSA and Maine agencies to avoid overpayments.

Source: SSA.gov, 2025-11-06, Maine.gov, 2025-11-06, MainePERS, 2025-11-06, MaineHealth, 2025-11-06

• Social Security Disability Insurance (SSDI): Provides monthly payments to people who have worked and paid Social Security taxes.
• Supplemental Security Income (SSI): Provides monthly payments to people with limited income and resources, including children and adults with disabilities.
• Medicaid: Provides health coverage to people with disabilities, including those with Williams Syndrome.
• Medicare: Available to some people with disabilities after receiving SSDI for 24 months.
• Work Incentives: Special rules that help people with disabilities return to work without losing benefits.

Source: SSA.gov, 2025-11-06

• ABLE ME: A tax-advantaged savings account for people with disabilities. Allows saving for qualified disability expenses without losing eligibility for federal benefits. Administered by Bangor Savings Bank.
• Maine Medicaid Waivers (HCBS): Provides home and community-based services for people with disabilities, including those with Williams Syndrome.
• MainePERS Disability Retirement: For public employees who become unable to work due to a disability. Provides a retirement benefit based on age, service, and medical condition.
• MaineHealth Vocational Services: Offers benefits counseling and work incentives support for people with disabilities.
• Maine Department of Labor Bureau of Rehabilitation Services: Provides vocational rehabilitation and employment support.

Source: Maine.gov, 2025-11-06, MainePERS, 2025-11-06, MaineHealth, 2025-11-06

• ABLE ME is Maine’s ABLE account program. It allows people with disabilities to save for qualified expenses on a tax-advantaged basis without losing eligibility for federal benefits like SSI or Medicaid.
• Contributions can come from earnings, family, friends, or other sources.
• To open an account, you must have a qualifying disability and meet SSA’s definition of disability.
• As of 2025, the program has nearly 1,700 accounts and over $10 million in assets.

Source: Maine.gov, 2025-11-06

• SSI has strict income and resource limits. In 2025, the monthly income limit for an individual is $943, and the resource limit is $2,000.
• SSDI has no income limit, but you cannot earn more than the substantial gainful activity (SGA) amount, which is $1,620 per month in 2025 (or $2,700 if blind).
• ABLE accounts do not count toward SSI resource limits, but contributions and earnings may affect eligibility for other programs.

Source: SSA.gov, 2025-11-06

• It is important to report any changes in income, employment, or living situation to SSA and Maine agencies to avoid overpayments.
• Overpayments can happen if you do not report changes or if your situation changes.
• If you receive an overpayment, you may be asked to repay the amount. You can request a waiver if you cannot afford to repay.
• Work incentives can help protect your benefits when you return to work.

Source: SSA.gov, 2025-11-06

• Maine Department of Health and Human Services
  Phone: 1-800-450-8545

  Email: [email protected]

  Hours: Monday-Friday 8:00 AM - 5:00 PM

  Website

  For Medicaid and waiver applications.
• Maine Public Employees Retirement System (MainePERS)
  Phone: 1-800-872-3838

  Email: [email protected]

  Hours: Monday-Friday 8:00 AM - 4:30 PM

  Website

  For public employee disability retirement.
• MaineHealth Vocational Services
  Phone: 207-874-2200

  Email: [email protected]

  Hours: Monday-Friday 8:00 AM - 4:30 PM

  Website

  For benefits counseling and work incentives.

• Can someone with Williams Syndrome qualify for SSI or SSDI in Maine?

  Yes, if Williams Syndrome causes significant limitations in daily living and meets the Social Security Administration’s definition of disability, a person may qualify for SSI or SSDI in Maine. Medical documentation is required.

• What is an ABLE account and how can it help in Maine?

  An ABLE account in Maine (ABLE ME) allows people with disabilities to save for qualified expenses on a tax-advantaged basis without losing eligibility for federal benefits like SSI or Medicaid.

• How do I apply for Maine Medicaid waivers for Williams Syndrome?

  Contact the Maine Department of Health and Human Services to apply for Medicaid waivers. These waivers can help cover costs for care, therapy, and support services for people with disabilities.

• What is the difference between SSI and SSDI for Williams Syndrome in Maine?

  SSI is for people with limited income and resources, while SSDI is for those who have worked and paid Social Security taxes. Both can provide monthly payments to people with disabilities in Maine.

• Can I work and still receive disability benefits in Maine?

  Yes, work incentives allow people with disabilities to work and keep their benefits. Special rules protect eligibility for SSI, SSDI, Medicaid, and Medicare when returning to work.

• What is MainePERS Disability Retirement and who qualifies?

  MainePERS Disability Retirement is for public employees who become unable to work due to a disability. It provides a retirement benefit based on age, service, and medical condition.