Prepare for Transition to Adult Services Long Before Age 21

For people with intellectual and developmental disabilities, transitioning from school-based to adult services can come with many questions. They can find answers for many of those questions in conversation with Mosaic staff like Laura Stow, State Services Development Manager in Colorado, and Ashleigh Dinkel, Community Outreach and Admission Coordinator in Central Iowa.

But there’s also a question Laura and Ashleigh ask families early in the conversation: Do you have a Medicaid home- and community-based services (HCBS) waiver?

A waiver allows people with disabilities to receive support in a home or community setting, rather than an institution. The majority of Mosaic services are classified as HCBS, so a waiver must be in place for someone to begin receiving services.

If a waiver is in place, Dinkel meets directly with the family to discuss their specific needs and what Mosaic can offer, and advises them to work with their state Case Manager to submit a formal Mosaic referral application.

“Their Case Manager should be an active partner in this process, providing the necessary support to ensure the application is complete and accurate,” Dinkel said. “If the family or Case Manager has questions while filling out the application, I’m just a phone call away to help clarify things.”

Stow said she sees herself as a resource navigator.

“I talk with them about what their needs are, then talk them through the complexities of the Medicaid waivers and where Mosaic would fit in,” she said. “If Mosaic isn’t the right fit, I try to guide them to other community resources that may help.”

For families without a waiver in place, the conversation is very different. Both Stow and Dinkel said the majority of families who contact them are in this situation.

Dinkel said she is transparent with them about how long it may take to receive a waiver. In Iowa, she said, families could wait up to eight years for HCBS services, while in Colorado, Stow said the wait may be more than 15 years.

Dinkel said the response is often disbelief, frustration and a feeling of defeat. Some, she said, are aging caregivers who recognize they can no longer provide what their adult child needs. Others may be planning for a new stage in their life, but now they see that it will not happen as they anticipated.

“I talk to parents a couple of times a month when someone is on the phone in tears,” Stow said. “It’s hard.”

Although there are waiting lists for HCBS services, Stow said some families can “piecemeal” together other services to obtain hourly supports that address some needs. Even in that situation, she said, it may take a year to receive a waiver and begin receiving services. States generally only offer a waiver to someone on the waiting list when the person who had been receiving it passes away or no longer needs it for other reasons.

Five of the 12 states Mosaic serves have waiting lists, and in 2025, there were more than 600,000 people waiting for services across the United States.

Giving direction to help people get started

For families waiting for waivers, both Stow and Dinkel offer guidance and resources to help them get started.

“I direct them to their local Case Management Agency to begin the application process,” Stow said. “I have handouts and guides that I send them via email to walk through the application process as well.”

Dinkel uses this three-step “clear roadmap to eligibility” to assist families:

• She encourages families to apply through their local health and human services department to begin the waiver process, and she provides the specific address and contact information for the one nearest them.

• She walks them through the funding options for 24-hour supported living, so families are aware of what is available.
• She facilitates introductions to local resource agencies and advocacy teams who can provide hands-on assistance with the application paperwork, ensuring the family has support every step of the way.

Apply for a waiver early.

In Colorado, a family can get on the waiting list when the child is 14, and Stow encourages them to do so.

Dinkel agreed.

“The earlier, the better,” she said. “Starting this process while a child is still school-aged is a proactive step that ensures the necessary funding and support systems are more likely to be in place by the time the child transitions into adult services.”

Become an advocate to help eliminate state waiting lists by joining Mosaic Allied Voices.