The Department of Developmental Services pays private contractors to provide residential and day programs, including work and training activities, on a per-person basis using a combination of state and federal funds. But lawmakers recognized in the mid-2010s that the rates — which have been frozen or cut during previous state budget crises — did not support an adequate supply of providers to meet the need, according to the Legislative Analyst's Office.

To address the problem, the state adopted a plan to raise rates gradually, with the final increase scheduled for July 1. But with another budget crunch looming this year, Newsom proposed delaying the last installment until July 2025 — after the coming fiscal year ends.

"Every time there's a budget deficit or we have a slowdown in the economy and we're not receiving state dollars, one of the areas that gets routinely hit is the developmental disabilities system," said Rick Rollens, president of Rollens Consulting, a government relations and lobbying firm.

The proposed delay in the rate increase would reduce state funding for those programs by $612.5 million while sacrificing $408 million from the federal government, resulting in a total reduction of $1 billion, according to the Legislative Analyst's Office.

This proposed delay places a burden on already challenged regional centers, service providers and staff "who have case loads that are way beyond what they should be in order to serve the community," Rollens said.

There's also the added fear that the final rate increase won't take place next year.

"If the economy continues to go down or we're faced with the same level of deficit next year, there's no guarantee that this delay doesn't turn into a permanent, 'Sorry, we just can't give you the money,' type situation," Rollens said.

Without adequate staffing, young adults who aren't getting support are often home without assistance, and parents are left scrambling for care, Lindsey said.

"And [some] parents had to quit their jobs and stay home because there is a 30-year-old at home with significant autism, Down syndrome or cerebral palsy," he said.

After Aidan turned 22, Movius said, he experienced a few severe crises while she and her husband were searching for a solution. He couldn't tell them he was depressed, she said, but they saw the signs.

Movius believes that Aidan missed going to classes with his peers and their daily activities, saying, "there just hasn't been a replacement for that."

Aidan "went into this behavioral crisis for about three months," she said. He was less active, couldn't access activities that brought him joy and struggled to leave the house — he couldn't even get into the car.

"His world became so small, and of course, so did ours, it was just these four walls. And he in addition to that was extremely self-injurious," she said. "It was the longest period ever of any kind of crisis like that for him by a long shot."

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