The California Safety Net

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all.  

Dan Morain and Anita Chabria at The Los Angeles Times:

California’s safety net is stronger than in the rest of the nation. The Lanterman Developmental Disabilities Act, signed in 1969 by then-Gov. Ronald Reagan, guarantees care for people who are diagnosed before age 18 as intellectually or developmentally disabled because of such conditions as epilepsy, cerebral palsy, severe brain injury or, increasingly, autism, from cradle to grave.

Gov. Gavin Newsom has spent far more than other states on the needs of Californians with disabilities. His January budget proposal earmarked $9.2 billion for the Department of Developmental Services in 2020-21, nearly double the state’s spending a decade ago of about $5.5 billion in constant dollars.

However, program operators have been struggling for years, and even with the Newsom administration’s investments, the system remains underfunded by no less than $1.4 billion, a study done for the state shows. The pandemic has only worsened that situation.

...

Knowing that parents are struggling, leaders of the Autism Society San Francisco Bay Area offered grants of $250. The plan was to provide money to no more than 20 families in need.

The organization’s leaders were stunned when more than 400 people applied. The organization ended up doing a drawing and gave out 63 grants, said its immediate past president, Jill Escher, mother of a son and a daughter who have autism.

“Our kids are more expensive. They break more iPads. They break furniture,” Escher said.

...

In John Swezey’s case, he was diagnosed as autistic in 1969, the year the Lanterman Act was signed by Reagan. Today, he is able to speak a few words and can read simple sentences.

But he needs to be monitored constantly.

And his mother repeats a refrain familiar to parents of aging autistic people.

“We can’t die, and we really can’t get sick,” Sue Swezey said. “In this climate, who knows. Suppose I got the plague? What would I do? I don’t know.”

California Developmental Centers: An Audit

California's State Auditor has issued a report on the state's  developmental centers.  The release:

BACKGROUND

Approximately 1,600 Californians with developmental disabilities reside in and receive medical and other services from one of the California Department of Developmental Services’ (department) developmental centers. Each center develops and maintains policies for identifying and preventing abuse and neglect of residents. Officers from the department’s law enforcement division, the Office of Protective Services (OPS), are on-site at each center and respond to alleged abuse of residents. The California Department of Public Health (Public Health) licenses and certifies the centers as skilled nursing facilities, intermediate care facilities, and general acute health care hospitals. Public Health conducts site visits for required inspections, called surveys, of licensed facilities at each center and investigates complaints involving those facilities. 

KEY FINDINGS

During our review of resident safety at the department’s developmental centers, we noted the following:

• Health care staff did not always promptly notify OPS staff that an incident had occurred—in seven of 60 health care reviews we examined, staff took from two and a half hours to nine days to notify OPS.

• The quality of OPS’s investigative work frequently fell short of its standards, and investigations were not always completed timely. We found, in the 48 OPS investigations we reviewed, that:

 OPS often failed to collect the required evidence during its investigations: OPS did not obtain written declarations from witnesses and the subjects of investigations in 21 cases, did not photograph alleged victims’ injuries in 19 cases, and did not obtain specialized medical examinations for alleged victims of sexual assault in two cases.
 OPS completed only 24 investigations (or 50 percent) within 30 days with three taking 292, 436, and 585 days, respectively, to complete.

• The same investigator conducted both the criminal and administrative investigations in eight cases, even though a 2002 report by the Office of the Attorney General stated that when an incident has both criminal and administrative implications, two separate investigators should conduct separate investigations.

• The department has not addressed longstanding problems, many of which were raised in the 2002 report.

 In the last 10 years, the OPS chief has transitioned six times and the commander in each of the developmental centers have transitioned between eight and 10 times.
 The department has not provided sufficient specialized training to its law enforcement staff.
 Even though OPS has suffered high vacancy rates, the department has no formal recruitment process—in fiscal year 2011-12, OPS had a vacancy rate of 42.8 percent in its law enforcement positions.
 Developmental centers have allowed some employees to work excessive amounts of overtime. Sixty-two health care and OPS law enforcement employees doubled their pay during a five-year period–they were paid nearly $14.1 million in overtime pay and $11.4 million in regular pay.

• While Public Health has conducted most of the federal certification surveys on time for the developmental centers, it did not complete nearly 60 percent of the required state licensing surveys for fiscal years 2005-06 through 2011-12.

• Although Public Health promptly investigated developmental center incidents classified as most serious, we found significant variation in the time it took to initiate investigations for incidents considered to have lower priority.

KEY RECOMMENDATIONS

We made recommendations to the department including that it amend policies and procedures for how OPS conducts investigations and that OPS provide the appropriate specialized training to its law enforcement staff. We also recommended that it promptly address OPS’s high number of vacancies, institute a formal recruitment program, and reassess staffing requirements to minimize the need for overtime. Further, to make certain that residents receive an adequate level of care and are protected from harm, the department should monitor closely the overtime approval process, attempt to cap the number of voluntary overtime hours employees can work, and distribute the overtime more evenly among staff.

California Cost-Cutting

Last Thursday, California Healthline reported:

The Lanterman Developmental Disabilities Services Act, passed in 1969, requires regional centers to pay for medically necessary treatments, including ABA therapy. Last year, in order to shift the funding burden on regional centers, the Legislature passed SB 946 -- by Sen. Darrell Steinberg (D-Sacramento) -- which required private insurers to pay for the service, saving money for the state.

...

The budget plan passed by the Legislature last week prohibits regional centers from paying the copayments or deductibles for ABA therapy, except in cases of demonstrable need. Ultimately, the provision means that people with private insurance will have to pay the deductible and copay.

...
State health officials said this is simply an instance of cost-cutting by the Legislature and governor.

All inquiries to state officials for this story were referred to the Department of Developmental Services, which responded with a short written statement. According to the DDS statement, if clients have trouble paying their copays, regional centers are allowed to help, depending on the clients' demonstrated financial need.

The DDS statement said, in part:

"The current budget trailer bill establishes uniform guidelines and authorizes regional centers to pay health insurance co-payments for services on behalf of lower income families or others who demonstrate hardship. Subsequent to enactment of the budget trailer bill, DDS will provide guidance to the regional centers regarding implementation of the authority to pay co-payments for low-income families or others who demonstrate hardship."

In the vernacular, this is called "means-testing."

That kind of means-testing has never been part of the Lanterman Act, according to Rick Rollens, a legislative adviser to ARCA, the Association of Regional Center Agencies.

"This is an historic shift in the Lanterman Act," Rollens said. "It's a major shift. It's the first time when a major service provision is now being means-tested. Historically, this has not been an issue."

...
The question of payment for ABA therapy in the regional centers is just one of several recent changes in autism coverage in California.

• The proposal to include ABA therapy as a benefit under the federally funded optional Medi-Cal expansion starting in 2014 was dropped.
• In their May budget proposal, state lawmakers allocated $50 million (or $100 million, if the federal matching money is considered) for one fiscal year of ABA therapy for Medi-Cal patients, which would have begun in July 2013. That provision was struck from the budget trailer bill in June.
• In 2009, the state eliminated funding for the Early Start program that affected about 17,000 developmentally delayed and at-risk children, including many kids who had early signs of autism, according to Jacobson.
• In September 2012, the state passed SB 946, requiring private insurers to pay for ABA treatment. The bill also provided for ABA therapy for children in the Healthy Families program. An estimated 10,000 of the 860,000 children in Healthy Families may have qualified for ABA therapy. But shortly after SB 946 passed, the state announced it was eliminating the Healthy Families program and moving those children to Medi-Cal managed care plans.

State health officials at the time assured lawmakers that there would be no gaps in continuity of care and that benefits would follow the children, but that has turned out not to be the case for an estimated 500 Healthy Families children who started to receive ABA therapy. Those children have been referred to the regional centers, and an estimated three-fourths of them are expected to fail to qualify for ABA therapy at the centers.

Mommy Tsunami in California

In Marysville, CA, The Appeal-Democrat reports:

The Mommy Tsunami walk that started Saturday in Yuba City ended Tuesday in Sacramento at the steps of the Capitol where hundreds of people protested proposed cuts to programs for the developmentally disabled.

A message in a bottle was also left for Gov. Jerry Brown.

Mary McGinnis, the 51-year-old Yuba City grandmother of Alex Acuna, 8, told the crowd about the trek that started at Raley's in Yuba City and included stops at the Walmart in Linda.

"It's been a long walk and an awesome journey," McGinnis said.

She spoke of how budget cuts threaten the Lanterman Act, the 1977 state law that provides the developmentally disabled with the right to services, allowing them to live more independent.

"It's no longer a promise," McGinnis said of the measure. "It's a bet."

KCRA has video.

See also the YouTube channel of DDSOorg.

California Cuts, Continued

See earlier posts about California budget cuts affecting people on the spectrum: here and here

The Arc is calling for action:

The Arc and other disability organizations are fighting in the Capitol to protect our community’s services. To limit the damage, we need a strong show of support from the community. That means you and the people you know throughout the state.

I’ll tell you more about the threat, but first, here’s what I’m asking you to do:

· Come to Sacramento on Thursday, February 3, and Thursday, February 10, the dates of the Legislature’s only public hearings on the developmental services budget. We need to fill the hearing rooms with people who are ready to tell the legislators what the real effect of the earlier cuts has been and what the likely categorical reductions and service eliminations would mean to them and the ones they love.

· Call your local state senator and assemblymember this week and give them the same message.

The threat is caused by the state’s massive budget shortfall, probably the worst since the Great Depression. To balance the budget, Governor Brown has proposed more than $12 billion in cuts and about the same amount in revenue increases by continuing some existing taxes by five years.

In developmental services, that would mean cuts to services of more than three quarters of a billion dollars—real, new cuts, over and above continuing the much smaller 2009 and 2010 cuts. The total cut this year would include the federal matching funds we would lose as a result of the state fund cuts.

It’s hard to grasp how much a cut that large would reduce the Lanterman Act services, especially because the governor hasn’t said exactly where the ax would fall. The state could eliminate all the regional centers’ operating budgets and still not cut that much.

We do know that most of the cuts probably would come from imposing what are called statewide “service standards.”

“Service standards” sounds good, doesn’t it? But what it means is simply eliminating the IPP team’s ability to pick the services and supports that the person with the disability needs, the key promise of the Lanterman Act. The 2009 caps on respite care and Early Start are the most recent examples of “service standards.”

Under the Lanterman Act, IPP teams write plans to reflect the specific needs of individuals, but with the cuts being proposed this process would certainly be harmed dramatically. Let the policymakers know how the services and supports benefit you and the real consequences to your life and the lives of your family members.

Real life consequences to real life people throughout the state are the kinds of things you should communicate to the legislative committees in Sacramento and to your local state senator and assemblymember. Tell them the cut is just too big to bear.

Here is the best information I have as of today on the committees’ public hearings:

· Assembly Budget Subcommittee on Health and Human Services, 9:30 a.m. or later, February 3, Room 4202, State Capitol, Sacramento.
· Senate Budget Subcommittee on Health and Human Services, 9:30 a.m. or later, February 10, Room 4203, State Capitol, Sacramento.

Reagan and Lanterman

Today would have been Ronald Reagan's 99th birthday. What does that have to do with autism? A website supporting California's Lanterman Act explains:

Frank D. Lanterman was a Republican State Senator from Pasadena, who was the primary author and force behind passage of California’s landmark disabilities law, now known as the Lanterman Developmental Disabilities Act.

When negative reviews and press about the state-run “hospitals” for persons with developmental disabilities came to light in the mid-1960s, the state’s response was to try to build more hospitals. But Frank Lanterman asked a different question: What do families want for their loved ones? What do people with disabilities want, to live more productive lives?

The Lanterman Act, signed into law by Governor Reagan in 1969 and substantially expanded in 1977, created a new model for services in California: A model based on inclusion, that empowered families and persons with disabilities to make meaningful choices about their own lives.

Click here for a history of the Lanterman Act.