Marin Programs for Adults with Developmental Disabilities Face Cuts

Zoe Epstein went to Sacramento earlier this March with a simple message for legislators, “Keep your promise.”

The 24-year-old resident of Cedars, a Marin nonprofit serving people with Intellectual and Developmental Disabilities (IDD) for more than 100 years, joined other advocates throughout the state to urge legislators not to delay crucial funding.

California’s “Lanterman Act,” passed in 1969, guarantees the right of people with developmental disabilities and their families to the services and support they need to live in parity with people without disabilities. It’s the only state in the country with this entitlement codified in law.

In 2020, a state-funded study of provider rates found that the state had underfunded IDD services by $1.8 billion. The legislature quickly voted to approve a rate model implementation to close the gap.

Now, fiscal year 2024-25’s funding is in jeopardy. Governor Newsom’s proposed budget delays the implementation timetable for the rollout of the rate model at a cost of $613 million in state funding, and an additional $400 million in federal matching funds. For Cedars, this means a loss of more than $2 million.

“Delay is destabilization,” said Cheryl White, Co-Executive Director of Cedars, “Without adequate funding, we can’t attract, train, and retain skilled Direct Support Professionals (DSP). Consistency is crucial to meeting the needs of the IDD community. As one young man told me, ‘I’m tired of training my staff.’”

Direct Support Professionals are the backbone of disability services, yet turnover is estimated to be more than 40%. This is largely due to underfunding.

White continued, “More than 80% of our budget goes directly to staff. It’s imperative, and a legal requirement, that we maintain mandated staff support to provide quality care.”

Zoe Epstein was accompanied by her father, San Rafael City Attorney Rob Epstein, and White to meetings with several legislators and their staff as part of the California Disability Services Association’s Legislative Affairs Conference. California Disability Services Association (CDSA) is a statewide association representing more than 110 community-based organizations that support and empower people with IDD and their families. They were among nearly 100 Californians with IDD, family members, support staff, and service providers who met with 118 legislative offices to share how this cut will dramatically impact their lives and the lives of the more than 450,000 individuals with IDD statewide.

Zoe encouraged the lawmakers to reject the Governor’s budget proposal unless the funding schedule is maintained. The consequences if there is a delay will be service reductions, waiting lists, facility and program closures, and disruption in continuity of care throughout California, impacting thousands of individuals with disabilities and their families.

“I rely on my staff for transportation, cooking, and emotional support,” Zoe told the legislators. In addition to her advocacy work, with the support of her staff, Zoe practices karate, volunteers at a local preschool, is a prolific artist, and serves on several Cedars committees.

“I want to do this kind of advocacy work for the rest of my life.” said Zoe, “I was nervous and excited, but I think we really made a difference.” While they were in the Capital, Assemblymember Stephanie Nguyen (D-Elk Grove) circulated a letter encouraging her fellow members to sign in support of maintaining the promised funding in the budget.

Zoe wants the May Revision budget to restore funding and encourages the public to write and call the Governor and their representatives in Sacramento. She says, “It’s important to stand up for your beliefs. If you don’t, no one else will.”