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Illinois • Rare/Genetic
Illinois offers several benefits for people with Williams Syndrome and similar disabilities, including Medicaid waivers, SSI, SSDI, and work-support programs. This guide covers eligibility, step-by-step application, state-specific waivers, money management, and where to get help.
If you have Williams Syndrome, you may qualify for federal benefits like SSI (for low-income disabled individuals) or SSDI (for those with enough work credits). SSI maximum monthly payments are $967 for individuals and $1,450 for couples in 2025[5]. SSDI requires medical proof of disability and sufficient work history. Both programs use SSA’s strict disability criteria—substantial impairments in daily activities expected to last at least one year or result in death. Children under 18 can also receive SSI with family income limits[5].
Illinois extends Medicaid coverage to many people with disabilities who work, even if their income is higher than typical Medicaid limits (up to $4,393/month for a single person)[1]. The Health Benefits for Workers with Disabilities (HBWD) program allows up to $25,000 in assets and charges a monthly premium based on income[1]. For seniors and the totally disabled, Illinois’ Benefit Access Program has higher income limits ($33,562/year for one person) and requires proof of total disability from SSA, VA, or other qualified sources[2]. Illinois also has Medicaid waivers for developmentally disabled adults and medically fragile children, but these often have waiting lists and specific medical criteria[8].
Start by applying for SSI or SSDI to establish federal disability status. For Illinois Medicaid or waivers, gather medical records, proof of income, and residency. Download application forms from state websites or contact your local DHS office. Always keep copies of everything you submit. If denied, appeal promptly—many are approved on appeal.
1. Apply for SSI/SSDI: Complete the online application at SSA.gov or call 1-800-772-1213. You’ll need medical records, work history (for SSDI), and financial documents (for SSI). 2. Apply for Illinois Medicaid: If you qualify for SSI, you’ll automatically get Medicaid. If not, apply separately through Illinois’ Integrated Eligibility System (IES). For HBWD, download and submit the application from hfs.illinois.gov[1]. 3. Explore State Waivers: Contact the Illinois Department of Human Services (DHS) Division of Developmental Disabilities to inquire about waiver programs for adults or children with developmental disabilities like Williams Syndrome[8]. 4. Consider an ABLE Account: Set up an ABLE account through il.savewithable.com to save money without affecting benefit eligibility. 5. Stay Compliant: Report all income, asset, and household changes to SSA and DHS to avoid overpayments and ensure ongoing eligibility.
SSI and SSDI are the main federal cash assistance programs for people with disabilities like Williams Syndrome. SSI is need-based, while SSDI is based on work history. Both may also qualify you for Medicaid or Medicare. Medicare is available after 24 months of SSDI, or earlier for some rare conditions. ABLE accounts let you save up to $18,000/year tax-free if you became disabled before age 26[6].
Illinois Medicaid covers children and adults with Williams Syndrome who meet income and disability criteria. HBWD allows working adults with disabilities to keep Medicaid even with higher incomes[1]. Benefit Access Program provides reduced vehicle registration fees and license plate costs for the totally disabled[2]. Medicaid waiver programs, like the Adult Developmental Disabilities Waiver and the Medically Fragile/Technology Dependent Waiver, offer community-based services but have waiting lists[8]. Illinois Assistive Technology Program (IATP) and Illinois Life Span connect families to resources and technology for independent living.
ABLE accounts in Illinois (il.savewithable.com) allow those with disabilities to save up to $18,000 per year without affecting SSI, Medicaid, or other means-tested benefits. Earnings are tax-free if used for qualified expenses. ABLE accounts are especially useful for families with higher savings goals than SSI allows.
SSI has strict income and asset limits ($967/month for individuals, $2,000 in countable resources)[5]. Medicaid in Illinois has higher income limits, especially under HBWD ($4,393/month for individuals, $5,962 for couples)[1]. SSDI does not have strict asset limits, but income from work may affect eligibility during Trial Work Period and after[4].
Always report changes in income, living situation, or resources to SSA and Illinois DHS as soon as possible. Failure to report can lead to overpayments, benefit loss, or legal action. See our guide on Avoiding Overpayments & Reporting Changes for detailed steps.
Illinois’ HBWD program lets adults with disabilities work and earn up to $4,393/month (single) or $5,962/month (couple) and still qualify for Medicaid—even with up to $25,000 in assets[1]. This is higher than standard Medicaid or SSI limits.
Medicaid waiver programs for developmental disabilities often have long waiting lists. Apply as early as possible and ask about emergency or priority status if your family member’s needs are urgent[8].
Many initial SSI/SSDI applications are denied. Don’t give up—appeals are often successful, especially with good medical records and support from legal aid or advocates.
SSI is for low-income individuals with disabilities and has strict asset limits. SSDI is for those who have worked and paid into Social Security, with benefits based on work history. Both may qualify you for Medicaid in Illinois, but eligibility rules differ.
Yes, if your child meets SSI’s income and disability rules, they automatically qualify for Illinois Medicaid. If not, you can apply separately through Illinois’ IES system or inquire about Medicaid waiver programs for children with developmental disabilities[8].
Yes, Illinois offers Medicaid waivers and the Health Benefits for Workers with Disabilities program for working adults with disabilities, including rare conditions like Williams Syndrome[1][8].
SSI and SSDI have earnings limits, but Illinois’ HBWD program allows people with disabilities to work and keep Medicaid even with higher incomes[1]. Always check with SSA and DHS before increasing work hours or pay.
An ABLE account lets you save money without losing SSI or Medicaid. Funds can be used for qualified disability expenses, and earnings grow tax-free[6].
Appeal the decision within 60 days. Many denials are overturned on appeal, especially with strong medical documentation and legal help.
Disclaimer: This guide provides general information, not legal advice. Benefit rules and amounts change often. Always check official sources and consult with a benefits specialist, legal aid, or government agency for your specific situation.
Yes, some Medicaid waiver programs have waiting lists. Apply early and ask your caseworker about priority status based on medical need[8].
Contact SSA and Illinois DHS immediately if your income, living situation, or resources change. Use our [Avoiding Overpayments & Reporting Changes](/guides/overpayments-and-reporting) guide for step-by-step instructions.
Contact your local DHS office, Illinois Legal Aid, or disability advocacy organizations. Many offer free help with applications and appeals.
Yes, many people with disabilities qualify for both. Medicare covers hospital and doctor visits, while Medicaid covers additional services and helps with Medicare costs. See our [Medicaid vs Medicare](/guides/medicaid-vs-medicare) guide for details.
