Nebraska Respite Care Through DD Waivers — How It Works

Respite care — temporary relief for primary caregivers — is one of the most requested services on Nebraska's DD waivers, and one of the hardest to actually use. The waivers authorize it, families desperately need it, but finding a qualified respite worker willing to come to your home for a few hours is a challenge that has only gotten worse as the provider workforce has shrunk.

Here's how respite care works under each of Nebraska's three developmental disability waivers, who qualifies, and what the practical options look like.

Respite Under the Family Support Waiver

The Family Support Waiver (FSW) covers children birth through age 21 and explicitly funds respite care as one of its core services. The catch: the FSW has a hard $10,000 annual cap across all services combined. Respite, child day habilitation, environmental modifications, assistive technology, and homemaker services all draw from the same pool.

In practice, families using the FSW might allocate a portion of their annual budget to respite. The number of hours depends on the reimbursement rate and on what remains in the $10,000 cap after other authorized services; respite cannot exceed the budget available for it. That's meaningful, but it's not a lot for families providing 24/7 support.

Respite Under the CDD Waiver

The Comprehensive Developmental Disabilities (CDD) waiver does not use the FSW's $10,000 annual budget cap, but respite is still limited by the individual's ISP, Level of Care assessment, budget, and applicable service limits. For individuals with intensive support needs, respite allocations can be substantial — enough to give primary caregivers regular overnight or weekend breaks.

CDD respite can be delivered in the family home, at a licensed respite facility, or in a host family setting. CDD can also support 24-hour residential services, while respite remains separately authorized under the individual's plan and applicable service limits.

Respite Under the DDAD Waiver

The DDAD waiver focuses on daytime habilitation and employment supports for adults 21 and older. It also includes respite, with the amount and setting determined by the individual's plan and applicable service limits.

Finding Respite Workers

This is the hardest part. Nebraska's disability service provider workforce has struggled with recruitment and retention for years, and respite care is especially difficult to staff because the hours are irregular, shifts are short, and the work requires specific training.

Options families use:

Provider agencies: Some agencies that deliver habilitation and other waiver services also provide respite workers. Ask your DHHS Service Coordinator for a list of respite-capable agencies in your area.

Self-directed hiring: Under self-direction, families can recruit their own respite workers — neighbors, extended family members, college students in healthcare or education programs. Workers must complete background checks and training requirements, but families control who they hire and when.

Respite cooperatives: Some Nebraska communities have informal respite co-ops where families of children with disabilities trade respite hours with each other. These aren't waiver-funded, but they supplement authorized hours.

PTI Nebraska: The state's Parent Training and Information center maintains connections to respite resources and can help families identify local options they might not find through DHHS directly.

Planning Respite Into the Transition

During the transition years (14 to 21), respite needs often increase as caregiving becomes more physically and emotionally demanding. Adolescents and young adults with significant disabilities require more complex support than young children — personal care needs evolve, behavioral challenges may intensify, and the logistics of managing school services, medical appointments, waiver applications, and adult agency coordination take a toll on primary caregivers.

Build respite into the ISP explicitly. Don't treat it as a luxury line item — caregiver burnout is the number one reason families struggle to maintain waiver services and end up in crisis placements that cost the system far more than planned respite.

The Nebraska IEP Transition to Adulthood Guide includes budgeting worksheets for the Family Support Waiver and a provider tracking system that helps families document outreach to respite workers and escalate to DHHS when capacity gaps leave families without relief.

See more Nebraska guides →