People with disabilities love this program. Why are Latinos underrepresented?

Among people who gave up on pursuing the program, 29% said it was "too much work," a state survey released in 2020 found. At a recent training by a state agency, families were told to expect the planning and enrollment process to take about eight months.

Many families choose an "independent facilitator" to assist them, whom they pay out of their program budget. Haun, whose brother is in the Self-Determination Program, said that even for her — an attorney who trains people on the program — "I could not make it work without the help of my independent facilitator."

But finding one can be especially challenging for people who need someone fluent in another language, advocates said. The UCLA report concluded that "the current complexity of the system disadvantages people of color, who could potentially benefit immensely."

Some parents seem "terrified of it," said Aida Amare, founder and president of Hope for Special Education, which helps serve the Ethiopian American community. "They have it in their mind that it is just too hard to find service providers." But Amare argued that parents should not be intimidated out of pursuing it.

"No one has told them, 'This is what you have been doing all your life'" as a parent, Amare said.

Getting into the program is "worth the effort," Paramount resident Daysi Funes said in Spanish. Her 17-year-old daughter Dayra, who has Down syndrome and autism, was among the first in the state to enter the fledgling program. Funes has been amazed by her progress with the help of a personal assistant.

"It's a marvelous program," Funes said. "I want my daughter to stay in it."

"The problem is the process."

Californians typically end up getting more spent on supportive services after they get into the new program: State data from the fall show that before people entered the program, their median level of annual spending was roughly $19,000, which rose to over $38,000 after enrolling.

That was slightly higher than the median amount they had been approved for in the traditional system — roughly $34,000 — but were not necessarily getting. Aaron Carruthers, executive director of the California State Council on Developmental Disabilities, said he sees those numbers as evidence of "people who were underserved finally getting what they needed."

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