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Utah • Neurological/Developmental
Utah residents with Down Syndrome may qualify for federal disability benefits (SSI, SSDI), Medicaid, and state-specific support. This guide explains who is eligible, how to apply, key programs, and how to manage money and benefits.
To qualify for Social Security Disability Insurance (SSDI), you generally need to have worked and paid into Social Security for at least 5 of the last 10 years (fewer years if under age 24)[6]. For Supplemental Security Income (SSI), you must have limited income and resources—generally under $2,000 in countable assets[5]. Disabled Adult Child (DAC) benefits are available if you have a disability that began before age 22 and your parent is retired, disabled, or deceased; you do not need a work history[4]. Both SSDI and SSI require that your condition (like Down Syndrome) is severe enough to prevent substantial work—in 2025, this means earning less than $1,620 per month ($2,700 if blind)[2][4].
State-specific information is limited; start here:
1. Check Eligibility: Use the SSI Income Estimator to see if you might qualify based on income and resources. 2. Gather Documents: Collect medical records, work history, and financial statements. 3. Apply Online, by Phone, or In Person: Apply for SSI/SSDI at ssa.gov, call 1-800-772-1213, or visit a local Social Security office. 4. Apply for Utah Medicaid: If you get SSI, you’re automatically enrolled in Utah Medicaid. If not, apply through the Utah Department of Health.
1. Gather Information: Collect Social Security numbers, birth certificates, medical records (including Down Syndrome diagnosis), work history, recent pay stubs, and bank statements.
2. Start Your SSI or SSDI Application:
3. Complete the Disability Report: Provide detailed information about your disability, work history, and medical treatment. For children, a parent or guardian will complete the application.
4. Medical Exams: Social Security may request additional medical exams or records to verify your Down Syndrome diagnosis and its impact on daily life.
5. Wait for a Decision: Processing times vary. Check your status online or call for updates.
6. Appeal if Denied: If denied, you have 60 days to appeal. Consider getting help from a disability advocate or attorney.
7. Apply for Utah Medicaid: If eligible for SSI, you’ll be enrolled automatically. Otherwise, apply at Utah Department of Health’s Medicaid page. Report any changes in income or living situation promptly to avoid losing benefits.
SSI (Supplemental Security Income): Provides monthly cash assistance to people with limited income/resources who are disabled, blind, or aged 65+. SSI is a needs-based program, and the amount you get depends on your income and living situation. Children with Down Syndrome may qualify based on family income[5].
SSDI (Social Security Disability Insurance): Pays benefits to adults who have worked and paid into Social Security but can no longer work due to a disability. The amount depends on your earnings record. Family members, including adult children disabled before age 22, may also qualify for benefits on your record[4][6].
Disabled Adult Child (DAC): If your Down Syndrome began before age 22, you may qualify for DAC benefits when a parent retires, becomes disabled, or dies[4].
Medicaid: While not a cash benefit, Medicaid provides health coverage, including long-term services and supports, mental health care, and other essential services for eligible individuals[5].
Utah Medicaid for the Aged, Blind, or Disabled: Offers comprehensive health coverage, including long-term services and supports, for those who meet income and disability requirements. Automatic enrollment for SSI recipients; others must apply separately[3].
Medicaid Work Incentive (MWI): Allows people with disabilities who work to keep Medicaid coverage if their income is below 250% of the federal poverty level and they pay a monthly premium[5].
Utah does not have a state disability payment program outside of Medicaid and federal SSI/SSDI, so most financial support comes from federal sources. However, Medicaid can cover services that support independence, such as personal care, therapies, and respite care, which are vital for many with Down Syndrome.
ABLE Accounts: These tax-advantaged savings accounts allow eligible individuals with disabilities (including Down Syndrome) to save money without affecting SSI or Medicaid eligibility, up to certain limits.
ABLE accounts are savings accounts for people with disabilities that began before age 26. Money in an ABLE account (up to $100,000) does not count toward the SSI asset limit. These accounts can help pay for disability-related expenses, education, housing, and more. Withdrawals for qualified expenses are tax-free.
SSI: Income and resource limits apply. In 2025, countable income must be below the federal benefit rate (check ssa.gov for current rates). Countable resources are limited to $2,000 for an individual, $3,000 for a couple[5]. Earnings deductions and work incentives may help you keep more of your benefits[5].
SSDI: Work credits and recent work history matter more than income. Once approved, you can earn up to the Substantial Gainful Activity (SGA) limit—$1,620/month in 2025 ($2,700 if blind). Earning above SGA may affect your eligibility[2][4].
Utah Medicaid: Income limits vary. For the MWI program, income must be below 250% of the federal poverty level and countable resources below $15,000[5].
Always report changes in income, living situation, or resources as soon as possible to avoid overpayments, which you may have to pay back. For SSI and Medicaid, even small changes can affect your benefits. Use the SSA’s online portal or call your caseworker to report changes. If you receive a notice about an overpayment, you can appeal or ask for a waiver or payment plan.
Report income and resource changes right away—even small changes can affect your SSI, SSDI, or Medicaid benefits. Delaying could lead to overpayments or loss of coverage.
Kids with Down Syndrome may qualify for SSI based on family income, but at age 18, eligibility switches to the individual’s own income and resources. Planning ahead can help avoid gaps in coverage.
Yes, if the child meets Social Security’s definition of disability and the family’s income and resources are low enough. SSI for children is based on parents’ income and assets until age 18, then on the individual’s own income[5].
SSI has strict income and asset limits. In 2025, countable resources must be under $2,000 for an individual. Income limits vary based on living situation and other factors—use the SSI Income Estimator for a personalized estimate[5].
Apply online at ssa.gov, by phone (1-800-772-1213), or at a local Social Security office. You’ll need medical records, work history, and financial information. Processing can take several months[6].
Utah Medicaid covers many therapies and supports for eligible individuals, including speech, physical, and occupational therapies, as well as personal care and respite services[3][5].
Yes, through SSI (if income/resources are low) or as a Disabled Adult Child (DAC) on a parent’s Social Security record if the disability began before age 22[4][5].
For SSI, your benefit amount may decrease. For SSDI, earning above the SGA limit ($1,620/month in 2025) may stop your benefits. Always report changes to avoid overpayments[2][5].
Disclaimer: This guide is for informational purposes only and does not constitute legal or financial advice. Benefit rules and amounts change frequently. Always consult official agencies or a qualified professional for the most current and personalized guidance.
An ABLE account lets people with disabilities save money without losing SSI or Medicaid. Funds can pay for qualified disability expenses, and up to $100,000 does not count against SSI asset limits.
You have 60 days to appeal a denial. You can request reconsideration, a hearing, and further review if needed. Consider seeking help from a disability advocate or attorney.
Yes, through the Medicaid Work Incentive (MWI) program, which allows you to keep Medicaid if your income is below 250% of the federal poverty level and you pay a monthly premium[5].
Contact the Utah Department of Workforce Services, the Disability Law Center, or a local Social Security office for personalized help and advocacy.
