Nearly $1 billion allocated to local agencies to buy support services for people with developmental disabilities in California went unspent in recent years and was ultimately returned to the state, despite claims by some people with disabilities and their families that they need more help.

California provides services to people with autism and other developmental disabilities through a system of nonprofit organizations called regional centers that contract with the California Department of Developmental Services. There are 21 regional centers in the state, each with a specific focus. 400,000 California Services are provided to children and adults through the regional centres each year.

The program has been criticized for leaving disparities in payments for services based on California's race and geography, and families have complained it is difficult to navigate.

Even after Californians get approval to get services from a regional center, that help may not end up being provided if staffing agencies and other service providers can't find workers to do the work. In recent years, regional centers have spent about two-thirds of the money they approved for support services, according to an analysis of state data provided by the Regional Center Agencies Association.

When regional centers don't use funds meant to purchase support services, the allocated funds end up being “returned” to the state. That amount has increased more than ninefold in three years, from $108 million in the 2018-19 fiscal year to more than $978 million for the budget year that ends in the summer of 2022.

The regional centers have been allocated roughly $8.9 billion in total to purchase services in 2021-22. A Times analysis of figures provided by the state found that for every $10 allocated to regional centers, they ended up getting more than $1 back in 2021-22. That's 11%, more than three times the percentage back the year before.

That same year, 30 percent of families of children receiving services from regional centers who responded to a survey Satisfied “Sometimes” or “Seldom” We are grateful for the support and service they received.

“It's amazing how much money is being given back to the state when there are so many people with developmental disabilities who are not receiving any services,” said Judy Mark, executive director of the disability advocacy group Disability Voices United.

Regional center leaders cited several issues, including businesses that provide essential services struggling to attract and retain staff. Larry Landauer, executive director of the Orange County Regional Center, said state wages for workers who support people with disabilities haven't kept up with rising wages in other areas.

“It's not that we were behind on funding,” Landauer said, “it's that the agencies just couldn't staff them.”

Amy Westling, executive director of the Association of Regional Center Agencies, said California “is a very good example of Record low unemployment rateSo the competition for talent is always going to be tough.”

Additionally, she said, when the state prepared the 2021-22 regional center budget, it anticipated the possibility of increased spending on individual services due to a spike in COVID-19 cases. Early in the pandemic, when schools were offering online classes and group services were suspended, “regional centers were paying for a lot of personal assistants” and other routine care, Westling said.

Funding was built into the budget in case it was needed again in 2021-22, “but in retrospect, that didn't happen,” she said. Spending on services did increase that year, from about $7.6 billion to $7.9 billion for all regional centers, but the increase wasn't as big as the budget.

That explanation didn't sit well with Fernando Gomez, co-founder of the Integrated Community Collaborative, which helps families of people with developmental disabilities navigate the system. Mr. Gomez said he was even upset that the previous reimbursements were so low.

“Can you imagine what that money could do? How many lives it could change?” he asked.

Advocates say there is a lot of unmet need. A report released two years ago by the public interest law firm Public Counsel found that some community centers More than 40% One in 10 children and teens never received any of the services they purchased through an agency.

Last year, the Independent States Commission Report The report calls it a “system in crisis,” and the study notes that wide variations in how centers assess who they serve and decide what services to provide “can lead to vastly different levels of care for individuals, even if their needs are similar.”

“At the end of the day, people with developmental disabilities aren't getting the services they should be receiving, and we're tired of the excuses,” said Mark of the Disability Voices Coalition.

At the South Central Los Angeles Regional Center, which serves areas including South Los Angeles and Compton, unspent funds ($122 million) amounted to more than one-fifth of the amount allocated to the center by the state to purchase services in fiscal year 2021-22, the highest percentage of any regional center statewide.

Leaders at the South Central Los Angeles regional center said they increased spending early in the pandemic as families scrambled to adapt to remote learning. The Public Counsel report credited the South Los Angeles center with more than doubling its spending on services for children and teens in 2020-21, and found that increase was a key factor in narrowing the statewide spending gap for Latino children that year.

Community Services Commissioner Cheryl Mallinson said when the 2021-22 budget allocation was planned, “the province was projecting past spending and preparing to anticipate the worst again.”

With schools back in session, families don't need the same kind of help they did before, center officials said. Director of Adult Services Jesse Rocha also highlighted the unusual mix of clients — more than two-thirds are school-age youth — compared to other regional center populations.

“The same needs don't exist anymore. … It's all based on the unique and individual needs that families and individuals have,” said Cesar Garcia, SCLARC's director of clinical services.For example, spending on respite care, a service category at SCLARC, fell from $109 million to $52 million, officials noted.

a Widely used surveys In the same year, 33% Families of children with disabilities People surveyed at the South Los Angeles center said they needed additional services.

Officials at the South Los Angeles Regional Center disputed claims that the survey results accurately reflect the center's performance, saying only a small percentage of users responded to the survey and that the number of users has increased so rapidly that some users are so new that the service has not yet been launched.

At the regional center serving Orange County, the amount of unspent funds ballooned from $3 million to nearly $65 million over two years, about 12% of the amount allocated for 2021-22 and slightly higher than the average rate of funds left unused at regional centers.

Even now, Landauer said, “we're struggling to hire enough people for our day programs,” which offer adults with disabilities a variety of daily activities to build skills and integrate them into the community.

As the state phases in wage increases over time, with more hikes due in January, Landauer said he's hopeful “we'll finally see a little bit of parity” between competing employers.

California has been gradually increasing funding for regional centers, increasing its budget allocation for purchasing services from about $6 billion to more than $11 billion between 2018 and 2024. The spending is being driven by rising caseloads and increased use of supportive services, the state said. Office of the Legislative Analyst.

This summer, agencies ended the budget year with more than $1.4 billion unspent, a figure that's not final. State officials said claims can still be submitted for support services provided during the budget year up to two years after the end of the year, until the unspent amount is eventually released back into state coffers.

Karla Castañeda, principal deputy director for operations at the Department of Developmental Services, said the state strives to “frequently monitor” spending, but there can be delays in getting the information and, “unfortunately, we've had even longer delays during the pandemic.” Additionally, Castañeda said there can be limitations on rerouting funds, especially for new services.

Over time, Castañeda said, “we expect the percentage of unspent funds to become much smaller.” For example, she said, the recent addition of service coordinators to regional centers will allow them to better connect people with the help they need, and California has also restored other services such as summer camps.

Westling said regional centers have no incentive to leave money unused for supportive services because they can't use the unused funds for their day-to-day operations. He also said regional centers can't be penalized for going over budget as long as the spending doesn't violate rules.

Disabled people Legally entitled In California, these services are underfunded, so “if the system runs out of resources, it becomes the administration's duty to ask for additional resources from the Legislature,” Westling said. “This is designed to ensure that we have the resources we need to meet people's needs.”

But to Valerie Vanaman, an attorney who represents people with disabilities and their families, the fact that hundreds of millions of dollars are sitting unspent is a sign that the system is “breaking down.”

Vanaman said the pandemic has caused regional centers to lose experienced professionals, and remote work has undermined the collaboration needed to ensure people get the services they need.

“You can see that where services should have been consolidated, where money should have been spent, there was no internal structure to make that happen,” Vanaman said.

Areva Martin, CEO of the nonprofit Special Needs Network Inc., said she understands the extraordinary circumstances regional centers are facing during the pandemic. “Even taking that into account, I think it speaks to the level of bureaucracy that makes it so difficult for regional centers to operate,” she said.

“After meeting with underserved and underresourced families, it's disheartening to hear that $1 billion is going to be returned,” Martin said.