IDD Service Waiting Lists: Why They Exist and How to Take Action
No one likes to wait, but more than 600,000 people across the U.S. with intellectual and developmental disabilities (IDD) have no other choice. Because demand for services is greater than the funding available, many are left in limbo.
At Mosaic, our mission is to relentlessly pursue opportunities that empower people. We listen to what matters to them and provide personalized services tailored to their specific dreams and goals.
The majority of Mosaic services are classified as home-and community-based services (HCBS), which enable people to receive personalized care in their community.
But, because HCBS are optional, states determine how much of their Medicaid budget to allocate to those services each year. Almost always, that amount is not enough to provide HCBS to everyone who needs them.
Therefore, people end up on a waiting list.
Of the 12 states in which Mosaic operates, seven have a waiting list; Illinois has the largest with more than 15,900 people waiting for HCBS.
How long people remain on the waiting list is a guessing game. Cheryl Wicks, Mosaic Vice President of External Affairs, said there are many recipients who have been on waiting lists for 10 years. Even those “next in line” often face delays due to high-priority emergency placements.
“If there are 30 emergency placements requiring mandatory funding, it pushes back the timeline for everyone else on the waiting list,” Wicks explained.
According to the Kaiser Family Foundation, an independent source for health policy research, polling and news, between 2024 and 2025, total enrollment in waiting lists and interest lists increased by 14%, and was more than 600,000 in 2025.
Because there’s no way of knowing how long someone will be on a waiting list, Cheryl encourages people seeking services to plan ahead and find out the earliest their state accepts applications.
“That’s a way to try and get ahead so they don’t have to go as long without services after they get out of school,” Cheryl said.
Elimination of waiting lists may not tell full story
Concerns from people with IDD, their families, guardians and providers like Mosaic about waiting lists are abundant, leading some states to make it a priority to eliminate them. But, the elimination of those waiting lists doesn’t always tell the full story.
For example, sometimes states offer partial funding that allows people to receive services, but not always at the level they require. For example, a person may benefit from 24/7 supports but, in an effort to get them off the waiting list, they may get intermittent or hourly support instead.
Cheryl said when a person applies to receive services through Medicaid, there are assessments to help drill down what level of support they are going to need.
“In an ideal world, they will get off the waiting list and receive those services,” Cheryl said. “But, that isn’t always happening.”
With federal funding cuts, waiting lists could continue
Waiting lists for Medicaid funding for HCBS services are not a new issue. Cheryl said, in her 22 years with Mosaic, they have always been a concern and will likely continue as states begin to address significant cuts to federal Medicaid funding over the next 10 years approved by Congress last year.
Medicaid funding comes from both the federal and state governments, so when the federal government reduces its share, the burden falls on the states to either make up the difference or face difficult choices about reducing or eliminating optional Medicaid-funded services.
What we’re doing
As Legislatures and General Assemblies begin discussions, Cheryl said Mosaic’s advocacy efforts will focus on protecting Medicaid for HCBS services.
“We want people to know how valuable those services are to the people we support and the impact cuts and longer waiting lists will have on the quality of life for people with intellectual and developmental disabilities and their families.”
Cheryl and other Mosaic leaders continue to advocate at the federal level with Congressional representatives and their staff in Washington, D.C.
Meanwhile, state operations directors in Mosaic’s network are monitoring state legislation and have begun meeting with legislative leaders, key committee chairs and key state department leadership. They will also participate in Hill Day events and engage with state provider associations.
How to lend your support
As state lawmakers begin to address how to make up for federal funding cuts, it is important they hear from their constituents. The best way to lend your voice is to visit Mosaic Allied Voices and click “Become an Advocate.” You’ll receive an email each time we share an Action Alert and have an opportunity to respond.
Last year, Mosaic Allied Voices volunteers like Dan and Cheryl Kinsinger played a key role in our advocacy efforts to preserve Medicaid and helped keep provisions like per capita caps, block grants and wide-scale FMAP reductions out of the final budget bill approved by Congress.
Like the Kinsingers, your voice makes a difference.