Advocates push for changes to developmental disability proposals in Legislature

A hearing addressed three legislative proposals made in the May revision of California’s budget and deferred for further deliberation. Legislative officials, legal experts and community members offered testimony on the proposals in the Assembly Subcommittee on Human Resources.

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The proposals would overhaul a state assessment for developmental disabilities, impose caps on residential treatment programs and strengthen community transition after leaving them.

New assessment for developmental disabilities

The first proposal would establish the Equitable and Consistent Needs Assessment. The new assessment would standardize the criteria used to evaluate eligibility for disability services and the tools used to conduct needs-based assessments of individuals who qualify for services said Karina Hendren, a fiscal and policy analyst with the California Legislative Analyst’s Office.

Since 1969, all Californians with developmental disabilities have been entitled to these services under the Lanterman Developmental Disabilities Services Act. However, advocates of the deferred proposal say the current metrics for eligibility must be updated because they allow for variation in regional centers’ intake criteria.

“We know what we spend, but this is our opportunity to move beyond using purchase of service as a proxy for needs and move into a future where we can understand what people’s unique needs are (and) whether those needs are met or unmet,” said Christine Bagley, branch chief of the California Department of Developmental Services’ statewide clinical services division.

Charlene Harrington, a professor emerita of social and behavioral sciences at the University of California, San Francisco, said her research studies of the DDS found “very wide” inequities in the allocation of disability services between racial and ethnic groups. For these reasons, Harrington said, updated evaluation criteria are necessary.

“DDS should use assessment data for allocating budgets and resources based on client needs,” Harrington said. “It must also … provide additional staff education and training and improve the oversight of regional center decision-making processes and practice reports.”

Opponents say it could limit access to disability services for individuals across the state. Fernando Gomez, co-founder of Integrated Community Collaborative and vice president of Disability Voices United, urged legislators to more carefully scrutinize the proposed standards before replacing the current assessment, the Client Development Evaluation Report.

“While (CDER) should certainly be modernized, shouldn’t we first determine whether it can be improved before replacing it with a new system whose consequences remain unknown?” Gomez said.

Gomez cited specific concerns that the proposal could allow California to adopt a narrower standard definition of “substantial disability” — the term used to refer to those eligible for DDS services — or reduce access to Individual Program Plans, personalized treatment plans written collaboratively by regional centers and the individuals they serve.

Several dozen community members said in public comments that they fear new, standardized criteria would render essential support unavailable to them or their family members. Elizabeth Gomez testified that her son, who has autism, “suffered” in traditional schools. She worries that he may not qualify for DDS services if eligibility requirements become stricter.

“My son has missed out on a lot…I still remember when he used to smile,” Gomez said. “He doesn’t anymore. A lot of our members of the community who have autism may look OK, but they’re dealing with a lot of things inside, and they’re not functional in jobs or able to live a normal life.”

Community transition out of state-run rehabilitation facilities

The DDS also proposed imposing a cap of two years on the length of time those with developmental disabilities may stay in Canyon Springs Community Facility and Porterville Developmental Center.

Read more Advocates push for changes to developmental disability proposals in Legislature

Porterville holds adults with developmental or intellectual disabilities who have come in contact with the legal system and are either incompetent to stand trial or deemed a risk to themselves or others. Canyon Springs holds adults who are transitioning into community integration from Porterville.

The two facilities are the last of their kind in California.

Discussion of this proposal was combined with another to consolidate and strengthen the resources available to individuals after they leave the facilities.

Advocates for these proposals say it would prevent Canyon Springs and Porterville from becoming “long-term residential placements” that replace community-based transition. According to DDS’ Bagley, under current law many individuals have remained in Canyon Springs and Porterville “for extended amounts of time, long beyond what’s necessary for rehabilitation.”

“A lot of the people in these settings have gone through years of medical, behavioral and therapeutic programming, and their needs have changed over time,” Bagley said.

Aaron Carruthers, executive director of the State Council on Developmental Disabilities, said a review conducted by the council found that of 585 individuals who have left developmental centers since 2015, only 11 returned — a recidivism rate of about 1%. The California Department of Corrections and Rehabilitation, on the other hand, has a recidivism rate of about 39%.

“People who leave development centers with the right support don’t come back,” Carruthers said. “But what we see is the system’s readiness to provide those supports has been uneven. … The problem is not individual readiness, it’s system delay. That’s exactly why a firm deadline is needed. It creates urgency and creates accountability.”

Conditions at Porterville and Canyon Springs can be poor, according to Disability Rights California’s Will Leiner.

“There is chronic use of physical and mechanical restraints at Porterville and Canyon Springs,” Leiner said. “At Porterville, where mechanical restraint can mean strapping somebody to a bed for an average of 90 minutes, that’s not OK. We have clients that would tell us, ‘I would rather be in jail than at Porterville.’”

Opponents of the proposal said limiting residents’ stays to two years in Porterville and Canyon Springs would constitute a public safety risk.

“No matter how extreme the level of violence, how poor treatment is going, or what complex needs or other mental health or behavioral issues a patient faces, under the proposed policy change an offender must be moved into another community setting far below the current average stay,” said Taryn Hunter, the chief deputy district attorney at the Napa County District Attorney’s Office. “That’s a big change — and one that does not appear to be justified by the data.”

In response to these concerns, Leiner said that often a designation of “dangerous” makes it nearly impossible for an individual to be deemed ready to leave detention. If there were clearer, time-constrained pathways to rehabilitation, these individuals could be better supported, according to Leiner.

“The fact that there’s been a finding of ‘dangerous’ doesn’t necessarily mean the person is dangerous,” Leiner said. “But their record gets stacked with finding after finding of dangerousness and stigma year after year, which then makes it harder to face them.”

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