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“We all know somebody or have a family member that’s connected to the system and it’s important that we’re speaking out and paying attention,” Addis, a longtime special education teacher, said in an interview. “This level of accountability is incredibly important so that we know they’re getting the services they need.”

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The Lanterman Developmental Disabilities Services Act, enacted in 1977, requires California to provide services and support to individuals with intellectual and developmental disabilities. The Department of Developmental Services funds those services through contracts with the regional centers, which maintain an operating budget of more than $13 billion.

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AB 1147 states that the regional centers are “failing in significant ways to deliver critical, adequate, and timely services to individuals and families” — and especially to Californians of color. As a result, individuals and their families are denied timely access to services and support, the bill says, barring them from living independently and integrating their lives with the surrounding community.

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New bill targets reform at California Regional Centers

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The legislation, called the Disability Equity and Accountability Act, would establish statewide performance standards for regional centers across a range of categories, including equity in access, civil rights and health and safety. It also would set strict response times for regional centers when they receive phone calls and requests for evaluations.

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Judy Mark, founder of Disability Voices United and mother of a 26-year-old with autism, said the latter provision is designed to address a concept known as “denial by delay.”

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“That’s when a family asks for services for their child and they’re not denied services but they’re just not given an answer. Sometimes this can go on for months or years,” Mark said.

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Karen Mulvaney’s 25-year-old daughter has been a client of the Alta California Regional Center for nearly two decades. Even now, Mulvaney still struggles to get her daughter, who has been diagnosed with a seizure disorder, cerebral palsy and brain damage, the services she needs.

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“You put in a request for services and it can take months to hear back. I’m experiencing that right now,” she said.

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The bill also aims to increase access to records and data maintained by the regional centers, by making the nonprofits subject to the Public Records Act and requiring that they publish information about client complaints on their website.

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Amy Westling, executive director of the Association of Regional Center Agencies, said her organization, which represents the state’s 21 regional centers, has yet to take a formal position on the bill.

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“I think there are certain elements that we can agree with in terms of where things might land in an ideal world but I do know that we will have some concerns about the money that would be needed to do some of this,” she said. “And there will also be some questions of how this might work with all of the other reforms that are already in the works.”

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Concerns raised about state’s developmental disability service system

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A state audit released last summer reviewed practices at three of the state’s regional centers — Alta California in Sacramento, North Bay in Napa and North Los Angeles — and found a slew of deficiencies at each.

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Among the findings was that none of the agencies employed enough service coordinators to meet legally required coordinator-to-consumer ratios. They also failed to properly monitor vendors who provide direct services and had no mechanism to track crucial customer service metrics, such as wait times, timeliness of referrals and the distance that individuals must travel to get services.

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And according to two recent reports, communities of color have, and continue to be, plagued the most by those issues.

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The nonprofit Disability Voices United and pro-bono law firm Public Counsel examined service funding levels at regional centers and and reported last year that people of color, particularly Latinos, receive significantly fewer services than white people. That spending gap, the reports found, has persisted — and even worsened over time — despite recent increases in spending.

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The Little Hoover Commission, an independent state oversight agency, launched a study last fall to assess disparities in service access, identify underlying causes and offer recommendations for repairing the system. The commission held four public hearings where parents, advocates and regional center clients offered testimonies about their own issues navigating the system. The commission’s final report is expected to be released sometime next month.

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The California Department of Development Services has acknowledged areas that need improvement and is working to address these issues, according to Westling.

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“Where we fall short on meeting our own goals, those are certainly things we can work on and address,” she said. “But saying the system is failing is overgeneralizing.”

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Regional Centers try new initiatives. But are they enough?

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The department is launching a new program to increase employee retention by providing financial incentives to staff who go through additional training and learn new skills.

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The agency is also working to close spending gaps across different racial groups for services provided to adults who live at home with their families. According to state figures, Latinos who are regional center clients and live at home receive 13% less funding than their white counterparts.

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Another major reform underway is implementing the system’s antiquated data and case management systems,which are nearly 40 years old. The state provided one-year funding in the 2021-22 fiscal year to develop a replacement plan but it will likely take years to implement a new system and switch everything over.

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Still, parents like Mark and Mulvaney said more must be done to fix the system and eliminate barriers to accessing the services that so many Californians depend on.

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“Right now, people served and family members who support them have very little trust in the regional centers,” Mark said. “So we have to do better.”