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Hawaii • Rare/Genetic
Cystic fibrosis (CF) is a rare, genetic disease that can require lifelong medical care and may involve hospital stays, medications, and frequent clinic visits. In Hawaii, CF patients—and their families—may have access to federal (SSI, SSDI, Medicaid) and state benefits (TDI, Medicaid Waivers) to help with healthcare costs and daily living when symptoms become disabling.
The Social Security Administration (SSA) offers two main disability programs for people with cystic fibrosis: Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI). SSI is for people with limited income and resources, regardless of work history. SSDI is based on work credits and past payroll taxes paid. The SSA uses a national disability evaluation process; cystic fibrosis is evaluated under the respiratory disorders listing for those with qualifying chronic lung disease and repeated hospitalizations. To apply, you must have medical records showing severe, persistent symptoms that significantly limit daily activities or work[<citation_id_to_add>]. For children, SSI eligibility is based more on the degree of disability than on parent income, though there are still income limits. If you qualify for SSI, you often also qualify for Medicaid. Always check for the most current federal rules and income limits.
Hawaii offers limited state disability benefits, mainly through the Temporary Disability Insurance (TDI) program. TDI provides partial wage replacement (up to 26 weeks, 58% of average weekly wage, max $837/week in 2025) for qualifying non-work-related illnesses or injuries, including qualifying chronic conditions like cystic fibrosis[1][2][3]. However, enrollment is only for employees (14+ weeks of employment) and the employer must have a TDI plan (state or private)[2][4]. No job protection is provided, unless under FMLA or Hawaii’s Family Leave Law. For those who do not qualify for TDI, or whose CF is too severe to work, federal programs like SSI or SSDI are the primary path. State Medicaid and HCBS waiver programs may also help cover specialized care, home health, or supportive services for children and adults who meet income and disability criteria. Contact the Hawaii Department of Human Services for Medicaid/HCBS questions, or the State Disability Compensation Division for TDI details[4][7].
To get started with disability and Medicaid benefits for cystic fibrosis in Hawaii, follow these steps:
Supplemental Security Income (SSI) is a federal program for people with disabilities who have limited income and resources, regardless of work history. Monthly cash payments and automatic Medicaid eligibility may be available. Social Security Disability Insurance (SSDI) is for those with a work history who have paid into Social Security; it provides monthly payments after a 5-month waiting period, with Medicare starting after 24 months. Medicare can also help people with SSDI, while Medicaid covers people with SSI and often those with high medical bills. ABLE accounts let people with disabilities save money without losing eligibility for means-tested programs.
For more on federal programs, see our guides on SSI vs SSDI, Medicaid vs Medicare, and ABLE accounts, or use the SSI Income Estimator.
Hawaii Temporary Disability Insurance (TDI) helps eligible employees who can’t work due to non-work-related illness or injury—including chronic conditions like cystic fibrosis—to receive partial wage replacement (58% of average weekly wage, up to $837/week in 2025, for up to 26 weeks)[1][2][3]. However, this is only for employees whose employer carries TDI insurance; the state does not administer benefits. Medicaid Expansion in Hawaii gives more adults access to coverage, and Home and Community-Based Services (HCBS) waivers may fund personal care, respite, and community living supports for eligible children and adults with high medical needs. The Hawaii Employees’ Retirement System (ERS) offers disability retirement for eligible public employees. There is no state Supplemental Security Income (SSI) or SSDI—these are federal programs. For all programs, start with the Hawaii Department of Human Services or the Disability Compensation Division for TDI inquiries[4][6][7].
ABLE accounts let adults with cystic fibrosis (and those with disabilities that began before age 26) save money without affecting eligibility for SSI, Medicaid, or other means-tested programs. Earnings grow tax-free, and funds can be used for qualified disability expenses. You must have a diagnosis before age 26. ABLE accounts are managed nationally, with options from multiple states. Learn more about how ABLE accounts work and how to open one in Hawaii.
SSI recipients must meet strict income and resource limits (Federal Benefit Rate, often $943/month in 2025 for an individual; slightly higher for couples). Some income (like wages) and assets (like ABLE accounts) may be excluded. SSDI has no current income limit if approved for benefits, but there may be caps during the application process. Medicaid and HI TDI do not count SSI or SSDI income, but Medicaid has its own income and asset tests. Always check for the most current limits in Hawaii.
If you receive SSI, SSDI, Medicaid, or TDI benefits, always report changes in income, household, employment, or health status as soon as they happen. Delays can result in overpayments, penalties, or loss of benefits. If you get too much money, you may have to pay it back. The SSA or state agency may make adjustments to your benefit amount. For SSI/SSDI, update your account at ssa.gov or call your local SSA office. For TDI, notify your employer or insurer immediately. For Medicaid, contact your caseworker.
Hawaii’s TDI program is temporary only—up to 26 weeks. If your cystic fibrosis prevents you from working long-term, apply for federal SSDI, SSI, or Disability Retirement (for public employees only) for ongoing support. SSDI/SSI also provide access to Medicare or Medicaid after an approval period. For help managing the transition, contact your local Social Security office.
Medicaid Home and Community-Based Services (HCBS) waivers in Hawaii may help pay for home health aides, medical equipment, and respite care—services not always covered by regular Medicaid. These waivers have waiting lists, so apply early through the Hawaii Department of Human Services. Bring your child or family member’s medical records and CF care plan to support the application.
You cannot receive full SSI and SSDI payments at the same time. However, if SSDI is less than the SSI amount, you may qualify for a 'supplement' from SSI. Your case must be reviewed by the Social Security Administration for combined eligibility.
Eligible employees may receive up to 26 weeks of Temporary Disability Insurance benefits, covering 58% of average weekly wages (up to $837 per week in 2025), for non-work-related disability[2][3][8].
If your employer does not have a TDI plan, you are not eligible for this benefit. However, you may still qualify for federal disability programs (SSI/SSDI), Medicaid, or other supports. Contact the Disability Compensation Division with concerns[4][7].
Hawaii Medicaid covers medically necessary treatments for eligible enrollees. This may include hospital care, medications, specialist visits, and some home health services, but coverage can vary. Check with the Hawaii Department of Human Services for details on covered services.
Yes, but there are rules. SSI allows some work with income limits. SSDI encourages work through trial work periods and other incentives. Both programs have special rules that let you keep benefits while working. See the SSI & SSDI Work Incentives guide for details.
Disclaimer: This guide is for educational purposes only and does not replace legal or medical advice. Benefits laws and programs change frequently; contact official agencies for the most current information. Eligibility and awards depend on individual circumstances.
Tip: Keep copies of all forms, letters, and medical documents. If you have questions, contact the agencies directly.
If your Hawaii TDI claim is denied, you have 20 days from the denial notice to appeal. Submit your appeal in writing, explaining why you disagree, to the Disability Compensation Division in Honolulu or your nearest district office[4].
Hawaii Medicaid Home and Community-Based Services (HCBS) waivers may help cover in-home aides, medical equipment, and respite care for qualifying adults and children with disabilities. Apply through the Hawaii Department of Human Services.
ABLE accounts let people with disabilities (onset before age 26) save money without affecting SSI or Medicaid eligibility. Funds can pay for education, housing, and health care expenses not covered by insurance.
Medicaid and SSI require annual renewals (redeterminations) to confirm you still meet eligibility criteria. Report any changes in income, living situation, or health status immediately to avoid losing benefits.
Contact the agency right away. You may owe back the extra funds, but payment plans and waivers are sometimes possible. Do not ignore the notice—doing so could result in penalties or loss of benefits.
