New Bill Promises To Bring Accountability To Services For Developmentally Disabled

By Ria Roebuck Joseph | The Center Square contributor, The Center Square California

April 6, 2023

(The Center Square) - At a Zoom town hall on Tuesday, stakeholders, parents and advocates for the developmentally disabled met to discuss a bill to improve the equity, accountability and transparency of services to California's developmentally disabled community.

Disability Voices United (DVU) is co-sponsoring Assembly Bill 1147- Disability Equity and Accountability Act of 2023 which was introduced by Assembly Member Dawn Addis.

The town hall saw advocates from a wide cross-section of cultures that included Latino, Vietnamese, Korean, South Asian, Native American and African American communities among others, all sharing their challenges in finding services for the intellectually, developmentally disabled and the various cultural challenges groups faced with language, cultural expectations and the navigation of a complex system.

Judy Mark, President, Disability Voices United who hosted the town hall, said the bill is “A long time coming.”

DVU advocates for systemic changes to the system that provides for individuals with developmental disabilities to ensure choice and control, meaningful outcomes, equity and accountability, and works to reclaim power for parents who have been relegated to the sidelines, replaced by professionals and bureaucracy.

Their co-sponsorship for AB1147 reflects this mission. The bill seeks to amend and add to various sections of the Welfare and Institutions Code, relating to developmental services.

“This is why I am here, and have been for a number of years,” Fernando Gomez, Vice President of DVU said.

But not all parents share the same experience. One parent of a soon to be 18 year old autistic child who at 15 months old was recommended to the Inland Regional Center testified “With my first phone call to the regional center, within the first few weeks they had a phone evaluation, followed up with a home visit, and right away started us on early intervention where my child was going to a 'preschool' where they specialized with kids with disabilities four hours a day."

"This was all before the preliminary diagnosis, but my case worker was on it…. The day of - diagnosis, the case worker was there and literally held my hand right until she walked me to my car in the parking lot where I started to cry. I've never forgotten every detail of that moment. The compassion was just off the charts, truly,” she said.

But that was over 16 years ago. “I don't disagree with putting more protocols in place but regional centers do deal with every disability out there, not just autism, and I feel like their caseloads are just overwhelming,” she continued.

"I would say increase the staff, increase the training, then bring in big brother to monitor,” she said.

Gomez unveiled “Big Solutions to Big Problems” and introduced the three main areas of focus: Equity, Accountability and Transparency.

Through equity, disparities in how service is delivered would be eliminated. People served by regional centers receive equal access to services regardless of their race, ethnicity, disability or location.

The bill would require the department to establish, by January 1, 2025, a common set of services and supports, including supported living services, and would require every regional center to make those services and supports available to consumers in negotiating, developing, and amending the IPP.

The bill would declare the intent of the Legislature for the plans to be developed consistent with the federal Affordable Care Act requiring community-based long-term services and supports be person-centered and self-directed learning and ensuring that goals in any plan allow for innovation and nontraditional service delivery.

It also authorizes a regional center to exceed the time period for developing an care plan, if there is good cause, but no more than 60 days from intake. If a regional center fails to meet the 30-day or 60-day deadline, they are required to provide the consumer with an adequate notice of action and notify the department of the reason for failure to meet the deadline.

Nina Spiegelman, Director of Policy for DVU, spoke of the need to make regional centers subject to the Public Records Act, noting that consumers have a fundamental right to records of governmental agencies.

“The hope is that ultimately we will be able to access our records in a way like you can access your medical records,” she said. I cannot tell you how hard it is ...just to get your (learning plan). Having a system ultimately that allows us to have, in our hands, access to these records is super important and the eventual goal of the IT system overhaul is to have data to see how providers are doing.”

Through transparency, clients and families can see how they are individually served and how their regional centers are doing with all their clients.

The bill would require the department, with respect to services and supports requested by a consumer that require an assessment, to complete that assessment within 30 days of the date of request, at no cost to the consumer.

The Association of Regional Center Agencies has been silent on where they stand with the bill.

There are approximately 400,000 Californians with developmental disabilities served by regional centers.

The bill is scheduled to be heard by the Human Service Committee at 1:30 p.m. on April 18.

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