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Illinois • Rare/Genetic
People with Rett Syndrome in Illinois may qualify for federal and state benefits, including SSI, SSDI, Medicaid, and ABLE accounts. These programs help cover medical care, living expenses, and support services.
To qualify for federal disability benefits, you must meet Social Security’s strict definition of disability. For SSI and SSDI, your condition must cause marked and severe functional limitations and last at least 12 months or result in death. For 2025, a child with Rett Syndrome cannot earn more than $1,620 per month (non-blind) or $2,700 (blind) to qualify for SSI. Adults must meet the Substantial Gainful Activity (SGA) limit, which is $1,620 per month for non-blind individuals in 2025. SSI has strict income and resource limits, while SSDI requires work credits. Both programs are designed for total, not partial, disability[3][5][2].
In Illinois, children and adults with Rett Syndrome may qualify for Medicaid, including the Health Benefits for Workers with Disabilities (HBWD) program. HBWD allows workers with disabilities to earn up to $4,393 per month (single) or $5,962 (couple) and have up to $25,000 in assets while keeping Medicaid coverage. Illinois also offers Medicaid waivers for people with developmental disabilities, which can provide home and community-based services. Eligibility for these programs depends on income, assets, and medical need. Children may qualify for SSI and Medicaid if their family meets income and resource limits[1][9][6].
IL ABLE accounts let people with disabilities save up to $18,000 per year (2025) for qualified disability expenses. Savings do not count against SSI or Medicaid resource limits. You can use funds for education, housing, transportation, and more[7].
You must report changes in income, resources, or living situation to Social Security and Illinois agencies. Failing to report can result in overpayments and loss of benefits. Use the SSI & SSDI Work Incentives guide to understand how work affects your benefits[4].
Contact the Illinois Department of Human Services at 1-800-843-6154 or a local Work Incentives Planning and Assistance Program for expert help with applications.
Yes, a child with Rett Syndrome may qualify for SSI if their condition causes marked and severe functional limitations and their family meets income and resource limits. The child cannot earn more than $1,620/month (non-blind) or $2,700/month (blind) in 2025[3][6].
The Substantial Gainful Activity (SGA) limit for SSDI in 2025 is $1,620 per month for non-blind individuals. Earning above this limit may affect your SSDI benefits[2][3].
Under the HBWD program, workers with disabilities can earn up to $4,393/month (single) or $5,962/month (couple) and have up to $25,000 in assets while keeping Medicaid coverage[1].
An IL ABLE account is a tax-advantaged savings account for people with disabilities. You can save up to $18,000 per year for qualified disability expenses without losing eligibility for SSI, Medicaid, or other benefits[7].
Yes, you must report changes in income, resources, or living situation to Social Security and Illinois agencies. Failing to report can result in overpayments and loss of benefits[4].
Illinois offers Medicaid waivers for people with developmental disabilities, including Rett Syndrome. These waivers provide home and community-based services for eligible individuals[9].
Disclaimer: This guide is for informational purposes only. Always check with official agencies for the most current rules and eligibility.
Yes, adults with Rett Syndrome may qualify for SSDI if they have a qualifying disability and enough work credits. SSDI is for adults who have worked and paid Social Security taxes[5].
You can apply for Medicaid in Illinois online, by phone, or in person through the Illinois Department of Human Services. Workers with disabilities may qualify for the HBWD program[1].
The maximum SSI benefit in Illinois for 2025 is $967 per month for an individual and $1,450 per month for a couple[6].
Working can affect SSI/SSDI benefits. SSI has strict income limits, and SSDI has the SGA limit. Use the SSI & SSDI Work Incentives guide to understand how work affects your benefits[4].
