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Idaho • Rare/Genetic
Idaho residents with Rett Syndrome—a rare genetic developmental disability—may qualify for Social Security, Medicaid, and other state benefits. This guide covers eligibility, how to apply, key programs, ABLE accounts, income limits, and links to official resources.
To qualify for federal Social Security Disability Insurance (SSDI), you must have a disability that prevents work for at least 12 months and have a sufficient work history with Social Security taxes paid. For Supplemental Security Income (SSI), you must have very low income and resources and a qualifying disability[5]. For SSI, your disability must meet the Social Security Administration’s definition, and you must not earn more than the monthly SSI income limit (in 2025, $1,620/month for non-blind individuals; $2,700/month for blind individuals)[1][5]. For adults with disabilities starting before age 22 ('adult disabled children'), benefits may be paid on a parent’s record if the parent is retired, disabled, or deceased and the adult child is unmarried and meets disability criteria[5]. Rett Syndrome, as a chronic, lifelong developmental disability, can meet these criteria if it limits major life activities and began before age 22[2][5].
Idaho’s primary state disability programs are Medicaid and the Developmental Disability (DD) waiver. To be eligible for Idaho’s DD waiver, you must qualify financially for Medicaid, and your disability (like Rett Syndrome) must be chronic, start before age 22, and severely limit major life activities (e.g., self-care, mobility, learning, communication)[2]. Idaho accepts conditions such as intellectual disability, cerebral palsy, epilepsy, autism, and related conditions that need lifelong, coordinated care—criteria that Rett Syndrome can meet[2]. The Idaho Disability Determinations Service (DDS) reviews medical evidence for SSI/SSDI eligibility, but applications must start through the federal Social Security office[3]. State-specific DD services require a separate Medicaid and DD program application after initial Medicaid eligibility is confirmed[2].
To apply for Idaho disability benefits for Rett Syndrome:
Social Security Disability Insurance (SSDI): Provides monthly benefits to adults who have a qualifying work history and a disability (like Rett Syndrome) that prevents work for 12 months or longer[4]. Benefits are based on your own earnings record.
Supplemental Security Income (SSI): Provides monthly benefits to adults and children with disabilities who have limited income and resources. SSI is needs-based and does not require a work history[4].
Disabled Adult Child (DAC) Benefits: If your disability began before age 22, you may qualify for benefits on a parent’s Social Security record, even if you have never worked[5].
Idaho Medicaid: Offers health coverage and, for those who qualify, access to the Developmental Disability (DD) waiver program, which provides services like personal care, respite, and community supports[2]. To access DD waiver services, you must first qualify for Medicaid and then complete a separate DD program application and assessment[2]. The DD waiver is designed for people with lifelong, severe disabilities (like Rett Syndrome) that began before age 22 and significantly limit daily functioning[2]. State-specific information is limited; start here: Idaho Department of Health and Welfare and the Idaho Division of Vocational Rehabilitation for additional resources and support.
ABLE Accounts: Idaho residents with disabilities (including Rett Syndrome) can open an ABLE account to save up to $18,000 per year (2025) without losing eligibility for SSI or Medicaid. Funds can be used for qualified disability expenses. See our ABLE Accounts guide for details.
SSI Income Limits: In 2025, non-blind individuals cannot earn more than $1,620 per month from work; blind individuals’ limit is $2,700 per month[1][5]. These amounts may change yearly. Medicaid has separate income and asset rules—check with Idaho Medicaid for current guidelines[2].
Reporting Changes: If your income, living situation, or resources change, you must report it to Social Security and Idaho Medicaid to avoid overpayments. Overpayments must be repaid and can affect your benefits. See our Avoiding Overpayments & Reporting Changes guide for help.
Rett Syndrome—a rare, genetic, lifelong condition—often meets Idaho’s criteria for developmental disability services if it causes severe limitations in daily life and began before age 22. The DD waiver can fund critical supports not covered by Medicaid alone, but you must apply separately after qualifying for Medicaid[2].
Idaho offers work incentives for people receiving SSI or SSDI. You may be able to work part-time and keep some benefits, but you must report all income. Overpayments can happen if you earn too much—report changes right away.
Yes, if your child meets Social Security’s disability definition and your family’s income and resources are low enough. You must apply through the Social Security Administration and provide medical evidence of your child’s condition[5].
The DD waiver provides community supports for adults with developmental disabilities. Rett Syndrome may qualify if it is lifelong, started before age 22, and severely limits daily activities. You must first qualify for Medicaid and complete a DD application and assessment[2].
ABLE accounts let individuals with disabilities save money without losing SSI or Medicaid. Funds can be used for education, housing, transportation, and other disability-related expenses.
Yes, but earnings above the monthly limit ($1,620 in 2025 for non-blind) can reduce or stop SSI benefits. SSDI has different work rules. See our SSI & SSDI Work Incentives guide for details.
You have the right to appeal. Request a written explanation of the denial and instructions for submitting an appeal. Gather more medical evidence if needed.
Idaho DDS reviews medical evidence for Social Security but does not take applications directly. Apply through your local Social Security office or online at ssa.gov[3].
Disclaimer: This guide is for informational purposes only and is not legal advice. Benefit rules and processes change frequently; always verify with official agencies.
Yes, Idaho offers Medicaid coverage and DD waiver services for adults with lifelong disabilities, but you must meet financial and medical eligibility and complete a separate DD assessment[2].
Services may include personal care, respite, supported living, day programs, and more—depending on your needs and the assessment[2].
Yes, if it is chronic, began before age 22, and severely limits major life activities. Idaho accepts related genetic and neurodevelopmental conditions for DD waiver services[2].
Start with your local Social Security office and the Idaho Department of Health and Welfare. Nonprofits and advocacy groups may also provide guidance.
