People with Prader-Willi Syndrome in Nebraska may qualify for federal or state disability benefits, including SSI, SSDI, Medicaid waivers, and direct assistance programs. Early application and clear documentation of medical needs are critical for approval. This guide covers eligibility, programs, and how to apply step by step.
To qualify for federal disability benefits like SSI or SSDI with Prader-Willi Syndrome, you must have a severe, medically documented condition that prevents "substantial gainful activity" and is expected to last at least 12 months or result in death[1][2]. While Prader-Willi Syndrome is not automatically listed, you can qualify if you show the condition causes significant mental and/or physical limitations, such as developmental delays, obesity, behavioral challenges, or cognitive impairments. For SSI, income and resources must be very low. For SSDI, you need enough work credits from past employment. Children with Prader-Willi Syndrome may qualify for SSI based on functional limitations, not parental income for low-income households. For SSDI, children may qualify as Childhood Disability Beneficiaries under a parent’s record[4].
Nebraska supplements federal programs with state-administered options. The Disabled Persons and Family Support (DPFS) program provides up to $400/month for services like home modifications, counseling, and personal care for those with severe, chronic disabilities—regardless of age[6]. If you have developmental disabilities (like Prader-Willi Syndrome), you may also apply for Medicaid home and community-based services (HCBS) waivers. Nebraska had a long waitlist for these waivers, but recent changes have reduced it. Two main waivers exist: the comprehensive waiver (no annual cap, full choice of services) and the family support waiver ($10,000/year cap, fewer services). Most applicants are offered family support first, not the comprehensive waiver[3]. You must be a Nebraska resident and meet Medicaid financial and disability criteria. There is no age limit for services, so adults with Prader-Willi Syndrome may still qualify[3].
1. Gather proof. Collect detailed medical records, doctor’s statements, and evidence of how Prader-Willi Syndrome limits daily activities and work.
2. Check eligibility. Use the SSI Income Estimator for SSI income limits. For SSDI, confirm your work history.
3. Start your application online. Apply for SSI/SSDI at ssa.gov/apply. For state programs, visit DHHS Nebraska’s site for forms and guidance.
4. Follow up. Respond to all requests from Social Security or DHHS promptly. Consider enrolling in Nebraska Total Care for help with Medicaid and disability applications.
Apply for Federal Benefits
Apply for Nebraska Programs
SSI (Supplemental Security Income): Provides monthly cash assistance to disabled adults and children with limited income and resources. In 2025, the maximum federal SSI payment is $967/month for an individual. Children with significant functional limitations may qualify, regardless of parent income if household income is low[2].
SSDI (Social Security Disability Insurance): Pays benefits if you have a sufficient work history and a disability that prevents work. Family members, including adult children disabled before age 22, may qualify under a parent’s record[4]. SSDI includes work incentives like the Trial Work Period, allowing you to test employment without losing benefits immediately[4].
Medicare and Medicaid: After 24 months on SSDI, you become eligible for Medicare. Medicaid is available for low-income disabled individuals and may cover additional services.
Nebraska Medicaid HCBS Waivers: These waivers help people with developmental disabilities (like Prader-Willi Syndrome) live at home or in the community. Services may include respite, personal care, behavioral support, and more. The comprehensive waiver has no annual spending cap and offers full service choice, but is rarely offered. The family support waiver has a $10,000 annual cap and more limited services—most applicants are offered this first[3]. Waiver slots are limited, and waitlists have recently been reduced but may still exist.
Disabled Persons and Family Support (DPFS): This program gives up to $400/month ($4,800/year) for services such as home modifications, counseling, and personal care for those with severe, chronic disabilities. A licensed medical professional must certify the disability[6].
Nebraska Total Care: Assists with Medicaid and disability benefit applications, but does not replace or change your benefits[2].
Group Long-Term Disability Insurance: Available to eligible state employees, covering up to 60% of monthly income after a six-month elimination period[5].
ABLE Accounts: Nebraskans with disabilities can save money in a tax-advantaged account without risking federal benefits. See ABLE Accounts for more.
ABLE accounts let Nebraskans with disabilities save up to a certain amount without affecting eligibility for SSI, Medicaid, or other means-tested benefits. Funds can be used for qualified disability expenses. Eligibility is based on onset of disability before age 26. See our ABLE Accounts guide for details.
SSI has strict income and resource limits—generally, recipients can have up to $2,000 in resources ($3,000 for couples) and very limited income. In 2025, earning more than $1,620/month (or $2,700 if blind) is considered "substantial gainful activity" and may disqualify you from SSDI[1]. Medicaid also has income limits, but exact figures depend on household size and program rules. Always report income changes promptly—see Avoiding Overpayments & Reporting Changes.
You must report changes in income, living situation, or medical condition to Social Security and Nebraska DHHS. Failing to report can lead to overpayments, which you may have to repay. Use our guide on Avoiding Overpayments & Reporting Changes
Nebraska has recently reduced its developmental disability waiver waitlist, but most families are offered the family support waiver with a $10,000 annual cap, not the comprehensive waiver. Be prepared for possible delays and limited options when applying for HCBS services[3].
For both SSI/SSDI and Nebraska Medicaid waivers, the process can take months or longer. Apply as soon as you have comprehensive medical documentation. Early application improves your chances of securing benefits before you need them most.
No. You must prove that Prader-Willi Syndrome causes severe, long-term limitations in daily activities or work. Medical documentation is essential—a diagnosis alone does not guarantee approval[1][2].
Yes, if the child’s condition causes marked and severe functional limitations. Household income must also be very low. The application process focuses on the child’s abilities and needs, not just the diagnosis[2].
Waiver slots are limited, and waitlists have existed—though the state has recently reduced them. Most applicants are offered the family support waiver first, which has a $10,000 annual cap[3].
DPFS provides up to $400/month for services for Nebraskans with severe, chronic disabilities at any age. A licensed medical professional must certify the disability. The program aims to help people live independently[6].
Yes, with limits. SSI and SSDI have strict income rules, but SSDI offers a trial work period and extended eligibility protections[4]. Always report income to avoid overpayments—see [SSI & SSDI Work Incentives](/guides/work-incentives).
You can appeal. Contact DHHS for instructions and deadlines. Continue to collect evidence of your disability and the need for services.
This guide is for informational purposes only and is not legal or financial advice. Always consult with a qualified professional for personalized guidance.
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Seek help. Nebraska Total Care offers assistance with Medicaid and disability applications—contact them for guidance[2].
Yes. Nebraska Total Care provides application assistance for Medicaid and disability benefits[2]. Local Social Security offices can also help with federal applications.
ABLE accounts let you save for disability expenses without affecting most benefits. You must have a disability with onset before age 26. See our [ABLE Accounts](/guides/able-accounts) guide.
Medicaid is based on income and offers more services in Nebraska, including waivers. Medicare is for those on SSDI for 24 months and covers medical services. See [Medicaid vs Medicare](/guides/medicaid-vs-medicare) for more.
State employees may have access to short- and long-term group disability insurance, covering up to 60% of income after a waiting period[5]. This is in addition to federal and state disability programs.
