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Illinois • Rare/Genetic
If you or your child have Cystic Fibrosis in Illinois, you may be eligible for benefits including Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Medicaid, and Medicare. Illinois offers extra programs and waivers to help with medical bills, working, and daily living.
To receive SSI (Supplemental Security Income) for Cystic Fibrosis, your child must have a medically eligible disability (marked and severe functional limitations) and live in a household below strict income and resource limits—requirements also apply to adults, but rules differ. SSDI (Social Security Disability Insurance) is for adults with enough work credits who can’t work due to disability; it’s not based on household income[3][5]. For both programs, you must have a medical condition that meets the federal definition of disability for the relevant age group. Claims are reviewed based on medical records, not diagnosis alone. Federal rules apply nationwide, but Illinois has extra programs for people with disabilities[3][5]. If you’re unsure about your federal eligibility, use the SSI Income Estimator tool for a quick look at whether you might qualify.
Illinois supplements federal programs with options like Medicaid for children and adults with Cystic Fibrosis, and the Health Benefits for Workers with Disabilities (HBWD) for working adults. Medicaid typically has lower income limits, but HBWD lets Illinois residents with disabilities earn up to $4,393/month (single) or $5,962/month (couple) and still get benefits—you just pay a premium[1]. Illinois also offers Section 1915(c) Home and Community Based Services (HCBS) waivers, which can help with home care, therapies, and medical equipment for eligible children and adults. For SSI, the maximum federal benefit is $967/month (2025, single), but Illinois may add a small state supplement[6]. People in Illinois with Cystic Fibrosis should check both federal and state programs, since state rules can help even if federal benefits are denied. If you’re working or want to work, HBWD and SSI & SSDI Work Incentives let you keep Medicaid or Medicare as you increase earnings.
• If your child has Cystic Fibrosis,start with SSI by calling Social Security at 1-800-772-1213 or applying online at ssa.gov[4]. • For adults who can’t work, apply for SSDI online at ssa.gov or by phone[4]. • Medicaid or HCBS waivers: Contact your local Illinois Department of Human Services (DHS) office or call the DHS Help Line at 1-800-843-6154[4]. • HBWD: Call 1-800-226-0768 for an application[1]. • For all benefits, gather medical records, proof of income, and your Social Security number before you apply.
For SSI or SSDI:
For Illinois Medicaid, HCBS waivers, or HBWD:
If you or your child has Cystic Fibrosis, the main federal programs are Supplemental Security Income (SSI) (for low-income individuals with disabilities), Social Security Disability Insurance (SSDI) (for adults with a work history and severe disability), and Medicare (after two years on SSDI)[3][4][5]. SSI helps with basic needs and has strict income limits—for a child, parents’ income and resources count, and the child must meet medical criteria[3]. SSDI is based on your own work credits. SSI & SSDI Work Incentives let you try working without immediately losing benefits. ABLE accounts help you save money and keep eligibility for needs-based programs. Review SSI vs SSDI to understand which program may fit your situation, or use the SSI Income Estimator to check your possible benefit amount.
Illinois offers extra help for people with Cystic Fibrosis:
Health Benefits for Workers with Disabilities (HBWD): For ages 16–64, this Medicaid option lets you work and still get coverage—even if you earn up to $4,393/month (single) or $5,962/month (couple)[1]. There’s a monthly premium, and you can have up to $25,000 in resources[1].
Medicaid HCBS Waivers: Illinois has several Home and Community Based Services (HCBS) waivers for children and adults with disabilities. These waivers can pay for home care, therapies, medical equipment, and respite care—services not always covered by regular Medicaid.
State Supplement: Illinois may add a small payment to federal SSI for some people[6].
Benefit Access Program: Seniors and people with disabilities can access reduced-fare transit and license plate discounts—handy for medical trips[7].
Other Programs: Depending on your situation, you may also qualify for SNAP (food assistance), housing help, or job training through local Illinois WorkNet Centers[4].
For children, the state has special Medicaid programs for those with severe disabilities—these may cover more services than standard Medicaid. Review Medicaid Waivers (HCBS) for details.
ABLE accounts are tax-advantaged savings accounts for people with disabilities. Money in an ABLE account generally does not count against SSI or Medicaid resource limits. Illinois residents can open an ABLE account to save for disability-related expenses, education, housing, and more. See ABLE Accounts for more details on how these work with your benefits.
For SSI in Illinois, income and resource limits are strict: $1,620/month (non-blind, child, 2025), $2,700/month (blind, child, 2025)[3]. Adults should check the “substantial gainful activity” (SGA) limit for SSDI—this changes yearly and is higher for blind individuals[2]. The federal SSI max is $967/month (2025), but Illinois may add a small supplement[6]. For Medicaid through HBWD, you can earn up to $4,393/month (single) or $5,962/month (couple), with a premium[1].
If you get too much from SSI, SSDI, or Medicaid, you may have to pay it back. To avoid this, always report changes in your income, living situation, or health right away to Social Security and Illinois DHS. Missing a report can lead to overpayments, which are hard to fix. See Avoiding Overpayments & Reporting Changes for tips on what to report and when.
If you have Cystic Fibrosis and want to work, Illinois HBWD lets you earn more and keep Medicaid—a rare opportunity among states. You pay a premium based on income, but you won’t lose your health insurance just for working[1]. Federal work incentives for SSI and SSDI also help you try working without losing your benefits right away. See SSI & SSDI Work Incentives for details.
Yes, if your child meets medical and financial requirements. The child must have marked and severe functional limitations, and your family’s income and resources must be below SSI limits. The child must not earn more than $1,620/month (2025) if not blind, or $2,700/month if blind[3].
HBWD is Illinois’ Health Benefits for Workers with Disabilities program. It lets working adults (16–64) with disabilities keep Medicaid even if they earn up to $4,393/month (single) or $5,962/month (couple). You pay a monthly premium, and can have up to $25,000 in assets[1].
ABLE accounts let you save money for disability-related expenses without losing eligibility for benefits like SSI and Medicaid. The money can pay for education, housing, transportation, and healthcare. See **ABLE Accounts** for details.
Contact your local DHS office or call the DHS Help Line at 1-800-843-6154. A caseworker will help you see if your child qualifies for a Home and Community Based Services (HCBS) waiver, which can cover extra services beyond regular Medicaid[4].
Yes, HBWD enrollees pay a monthly premium based on income. The higher your income, the higher your premium, but you can still have Medicaid coverage even with a moderate income[1].
Disclaimer: This guide is for general information only and is not legal advice. Benefit rules and amounts change. Always check with official agencies for the latest information.
For all programs: Keep copies of all paperwork and contact the benefits office right away if your income, living situation, or health changes.
Working doesn’t always mean losing your benefits. Illinois HBWD and federal work incentives (PASS, Ticket to Work) help you keep Medicaid, SSI, or SSDI while you work. Always report your earnings to Social Security and DHS[1][4].
Illinois may add a small supplement to the federal SSI payment for some people. The federal max is $967/month (2025, single); check with your local DHS to see if you qualify for extra state help[6].
Medicaid is for low-income people and may cover more services, including waivers for home care. Medicare is for people over 65 or those who have received SSDI for two years. See **Medicaid vs Medicare** for more.
Call Social Security (1-800-772-1213) and Illinois DHS (1-800-843-6154) right away if your income, living situation, or health changes. This helps avoid overpayments and keep your benefits correct. See **Avoiding Overpayments & Reporting Changes** for a full guide.
Call the DHS Benefits Planning Program at 1-217-588-6326, the Ticket to Work Help Line at 1-866-968-7842, or a local Illinois WorkNet Center. These experts can walk you through your options and the application process[4].
