Rett Syndrome Disability Benefits in West Virginia

For federal disability benefits like SSI and SSDI, you must prove your Rett Syndrome causes severe limitations expected to last at least 12 months or result in death. For SSDI, you or a parent must have enough work credits; SSI is based on financial need, not work history. Children can qualify under parental records if the disability began before age 22[7]. For both programs, the condition must significantly limit the ability to do basic work activities. If already receiving benefits as a child, you may transition to adult benefits at age 18 if the disability continues[7]. Special rules apply for DAC (Disabled Adult Child) benefits if the disability started before age 22 and a parent is retired, disabled, or deceased[7].

West Virginia uses the same medical criteria as federal programs for SSI and SSDI, but also offers state-specific supports. Medicaid waivers (like CDCSP) help families keep children and adults with Rett Syndrome at home with necessary services[2]. The West Virginia Division of Rehabilitation Services (WVDRS) provides vocational support and can help with the SSI/SSDI application process[5]. State legal aid and the WVU Center for Excellence in Disabilities (CED) offer guidance on benefits, appeal rights, and local resources[5]. WVABLE accounts enable saving without losing means-tested benefits[3]. There is no state supplemental payment for SSI in West Virginia, but Medicaid and waiver programs fill many gaps for those with significant disabilities[2][5].

• Apply online: Visit ssa.gov to start your SSI or SSDI application—choose ‘Disability’ and follow the prompts.
• Local office: Call or visit your nearest Social Security office for in-person help.
• Medicaid: Apply at the West Virginia Department of Health and Human Resources (DHHR) website or dial 211 for local assistance.
• State help: Contact WVDRS or WVU CED for guidance on waivers, assistive technology, and appeals[4][5][6].
• Legal aid: See if you qualify for free or low-cost legal help through West Virginia Legal Aid—especially for denied claims[6].

• Gather medical records: Collect documentation of your Rett Syndrome diagnosis, treatments, and how the condition affects daily life. Include reports from doctors, therapists, and schools.
• Start your application: For SSI/SSDI, apply online at ssa.gov, by phone (1-800-772-1213), or at a local office. Complete all forms carefully—errors can delay your claim[4][7].
• Schedule an interview: Social Security may contact you for a phone or in-person interview to review your application.
• Wait for a decision: The Disability Determination Services (DDS) office will review your claim, sometimes requesting more exams.
• Appeal if denied: You have 60 days to appeal. Consider legal aid or an SSI attorney for help with the process[4].
• Apply for Medicaid: Submit your application through DHHR or your local DHHR office. If eligible, ask about waiver programs (like CDCSP) for additional home-based services[2].
• Contact WVDRS or WVU CED: These agencies can help with vocational support, assistive technology, and navigating benefits[5].
• Open a WVABLE account: If on SSI or Medicaid, consider an ABLE account to save for disability-related expenses without risking benefits[3][5].

• SSI (Supplemental Security Income): Monthly cash benefit for people with limited income/resources who are disabled, blind, or over 65. Children and adults with Rett Syndrome may qualify if they meet medical and financial criteria[4][7].
• SSDI (Social Security Disability Insurance): For those (or their parents) with sufficient work history. Adults disabled before age 22 may qualify for DAC benefits on a parent’s record[7].
• Medicaid: Health coverage for low-income individuals, including those with disabilities. Covers doctor visits, therapies, and long-term care[6][8].
• Medicare: Available to those who receive SSDI for 24 months or are 65+. Covers hospital, medical, and some home health services[8].

• West Virginia Medicaid Waivers: Programs like the Children with Disabilities Community Service Program (CDCSP) help families keep children with Rett Syndrome at home with supports like nursing, therapies, and respite care[2]. Waivers reduce the need for institutional care and can cover services not typically included in regular Medicaid.
• WV Division of Rehabilitation Services (WVDRS): Offers vocational rehabilitation, job training, and help with SSI/SSDI applications for those seeking employment or independence[5].
• WVABLE: A tax-advantaged savings account for people with disabilities, allowing savings up to $100,000 without losing SSI or Medicaid—key for future planning[3][5].
• West Virginia Assistive Technology System (WVATS): Helps residents access and pay for assistive devices and technology to improve independence[1][5].
• West Virginia University Center for Excellence in Disabilities (CED): Provides information, training, and family support for navigating benefits and community resources[2][5].
• Legal Aid of West Virginia: Offers free or low-cost legal help for benefit appeals and access issues[6].

WVABLE lets West Virginians with disabilities save and invest without losing eligibility for SSI, Medicaid, or other means-tested benefits. You can use these funds for qualified disability expenses like education, housing, health care, and assistive technology. ABLE accounts are a key tool for financial independence and future planning[3][5]. State-specific info and enrollment: wvtreasury.gov/Citizens/WVABLE.

SSI has strict income and asset limits (in 2025, individual assets generally must be under $2,000). SSDI does not have asset limits but requires a work history. Medicaid income limits vary by program; waivers may have different rules. WVABLE balances up to $100,000 do not count against SSI resource limits[3][7]. Always report income changes to avoid overpayments—see our guide on Avoiding Overpayments & Reporting Changes.

You must report changes in income, living situation, or resources to Social Security and Medicaid to avoid overpayments, which you may have to pay back. Use the SSI Income Estimator to check how earnings affect your benefits. For help with reporting or disputing overpayments, contact your local Social Security office or West Virginia Legal Aid[6]. More tips: Avoiding Overpayments & Reporting Changes.

• Social Security Administration (WV)
  Phone: 1-800-772-1213

  TTY: 1-800-325-0778

  Hours: Monday–Friday, 8:00 a.m. to 7:00 p.m.

  Website

  For SSI/SSDI applications, appeals, and questions.
• West Virginia DHHR – Medicaid
  Phone: 1-877-716-1212

  Website

  Apply for Medicaid and ask about waiver programs.
• West Virginia Division of Rehabilitation Services
  Phone: 304-356-2066

  Website

  Help with job training, assistive technology, and benefits.
• WVU Center for Excellence in Disabilities
  Phone: 304-293-4692

  Email: [email protected]

  Website

  Family support, training, and resources.
• 211 West Virginia
  Phone: 211

  Website

  Resource and referral service for health and human services.

• Can my child with Rett Syndrome get SSI in West Virginia?

  Yes, if your child’s condition severely limits their functioning and your family meets the income/resource rules. Apply through ssa.gov, and provide thorough medical documentation[4][7].

• What West Virginia Medicaid waivers help with Rett Syndrome?

  Waivers like CDCSP provide home and community-based services, such as nursing, therapies, and respite care, so your child can stay at home instead of in an institution[2].

• How do I appeal a denied SSI/SSDI claim in West Virginia?

  You have 60 days to appeal. Contact West Virginia Legal Aid or an SSI attorney for help with paperwork and representation at hearings[4][6].

• What is a WVABLE account?

  WVABLE is a savings account for people with disabilities that does not count against SSI or Medicaid asset limits, up to $100,000. It helps pay for qualified expenses like education, housing, and assistive technology[3][5].

• Where can I get help with assistive technology in West Virginia?

  Contact the West Virginia Assistive Technology System (WVATS) or the WV Division of Rehabilitation Services (WVDRS) for information, loans, or grants for devices that help with daily living and communication[1][5].

• Can adults with Rett Syndrome qualify for benefits on a parent’s work record?

  Yes, if the disability began before age 22 and a parent is retired, disabled, or deceased, you may qualify for Disabled Adult Child (DAC) benefits under SSDI[7].