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County struggles to meet 'overwhelming' needs

State's patchwork system makes youth mental health care hard to provide

Back in 2006, Chris Tanti sought to reinvent the way Australia delivered youth mental health services.

With an early $50 million in government funding, Tanti and his organization, Headspace, would spend the next decade creating a network of 100 mental health centers serving 355,000 people throughout the country, each one with its own personality. Some were located in shopping districts like downtown Mountain View, Tanti said, while one was in a remodeled former train station.

Each Headspace center has a broad range of help at the ready -- psychiatrists, psychologists, primary care doctors, occupational therapists, social workers, nurses and more -- but the vibe is nothing like a sterile medical clinic.

The centers and the way they were marketed had such little resemblance to mental health clinics, while essentially playing the same role, that roughly half of the children and young adults who walked through the door were self-referrals. They showed up looking for help, even if they weren't quite sure what was wrong with them, said Tanti, who served as Headspace's first CEO.

Could something like Headspace take root in California, where the health care model and financing is so different from that of Australia's? A number of organizations in the Bay Area, notably the Stanford Center for Youth Mental Health, are seeking to emulate Headspace, widely considered to be the gold standard for youth mental health care. Santa Clara County is planning to partner with Stanford Hospital to open clinics in the San Jose and the North County area, leveraging a total of $15 million in public mental health funds.

Just north of the county border in Menlo Park, a program called SafeSpace launched last year aiming to fill the same niche as Headspace, with Tanti serving as the organization’s CEO for its first year. Its downtown center is open as a hub for middle and high school students, with a direct link to clinical services just a block away.

Getting a Headspace model that could serve anyone who walks through its doors will likely be a significant uphill battle -- California doesn't have the type of government-sponsored health care system that Australia has, Tanti said. Instead, Stanford would need to broker agreements with commercial insurance companies and public agencies. These contracts are often seen as a significant barrier to providing care, made more difficult by the fractious nature of Medi-Cal and how individual counties provide mental health services.

"The need is so overwhelming," said Steve Adelsheim, director of Stanford's Center for Youth Mental Health and Wellbeing. "Part of the concern is that when we open there will be many, many people coming. Will it be an overwhelming task? We won't know."

A fragmented system

The structure of mental health care services in California is unusual compared to most of the country. Among the biggest challenges is trying to circumvent bureaucratic roadblocks and tap into roughly $8 billion in mental health care funding provided by the state each year.

For the last six decades, California has taken steps to reduce the role of the state in providing mental health care, opting instead for a decentralized system that pushes most of the administrative and financial responsibility to the state's 58 counties. This patchwork approach of counties trying to fill mental health care gaps ends up isolating mental health from the rest of the Medi-Cal model.

Few other states do this "carving out" that delegates Specialty Mental Health Services down to the county level, something that requires a waiver from the federal government every two years. Other states, including Iowa, Nebraska and New York have sought to shift behavioral health services back to statewide Medicaid managed care plans.

One of the downsides of California's fragmented system is that every county has approached mental health care in a different way, without any continuity, according to Sheree Lowe, vice president of Behavioral Services at the California Hospital Association. She said it's hard enough that behavioral health is so underfunded in California, but it only adds to the difficulty of getting care when every county is approaching the problem in a different way.

If private practices want to provide psychiatric care or therapy for Medi-Cal patients and have the government pay the bill, it's an uphill battle. Lowe said they not only have to contend with relatively low reimbursement rates, but also have to work their way through the bureaucratic slog of contracting with individual counties. It's unreasonable to think a small practice has the administrative bandwidth to ink contracts with so many different government agencies.

"Imagine a psychiatrist in private practice in Sacramento having to have contracts with 30 different counties. For a one-man psychiatrist office -- that's just too much to ask," she said. "Most psychiatrists refuse to contract with commercial and Medi-Cal payers and put the burden on patients to pay and get reimbursed from the insurance companies."

One study found that psychiatrists are among the least likely physicians to accept new patients on public insurance, with only 37 percent accepting Medi-Cal, according to a report by the California Healthcare Foundation. Payment amounts were the number one problem cited, followed by "administrative hassles" and delays in payments.

For families, those numbers translate into long delays in getting care and a lot more legwork for patients searching for a timely appointment, said Saul Wasserman, government affairs committee co-chair for the California Academy of Child and Adolescent Psychiatry.

"You can find a child psychiatrist now if you're willing to pay out of pocket," he said. "You may or may not be able to find someone if you are on a PPO-type insurance plan, and if you're using public insurance like Medi-Cal, it's impossible."

More than half of Santa Clara County's half-billion dollar annual budget for mental health and substance abuse services doesn't actually finance county-operated programs, instead flowing out to roughly 40 different community-based organizations (CBOs). This includes a network of nonprofits and health care agencies peppered throughout the county and serving tens of thousands of patients each year.

Although Santa Clara County consistently passes state performance reviews and requirements with flying colors -- and has received praise for its Crisis Stabilization Unit for youth as a means to avoid hospitalization -- there are signs that the county has struggled to maintain good relationships with its partners.

Last year, a group called the Community Health Partnership brought together 35 people from health care clinics, mental health nonprofits and hospitals serving North County and West Valley cities and asked them, candidly, what kind of problems they have working with the county. The long list of grievances show that CBOs rarely have the administrative bandwidth to make it through the laborious application process with the county, particularly smaller nonprofits with shoestring budgets. The contracts, they said, usually come with a fairly low reimbursement rate and burdensome reporting requirements.

Santa Clara County Supervisor Joe Simitian, who requested the report, told the Voice that the results didn't come as a surprise to him, reaffirming that nonprofits and the larger community see the county as a bureaucracy that is slow to respond to crises and difficult to work with.

"County staff has to work harder to overcome some of that bureaucratic inertia that likely affects counties of our size," Simitian said. "It's a great big battleship, and it's difficult to turn it in even a degree or two."

Simitian said it's worth remembering that the county has its own hands tied in many ways, with burdensome restrictions by state and federal agencies on how money is spent. The latest example was the county's contract with an intensive outpatient program called ASPIRE, operated by El Camino Hospital, which took two years of planning and creativity in order to comply with the billing structure allowed by Medicaid.

Contracting for services isn't so difficult when the county is looking to buy widgets, Simitian said, but the same can't be said for mental health services. Spending is heavily constrained and monitored, and services often simply don't fit within the framework of state law.

"The provisions that are in state law to try and make sure that the process doesn't involve misuse of public funds, doesn't have favoritism and gives people the best product at the lowest price -- which is fine, if you want to buy widgets," he said. "But if you want to solve complex social problems like the mental health needs of teens in our area, the process doesn't function particularly well."

Even without the bureaucratic slowdown, Lowe said the state's strategy of isolating Specialty Mental Health Services from the state's health care system is fundamentally part of the problem, and a vestigial approach to mental illness that's based on stigma. Physicians have more difficulty coordinating care, and patients are expected to figure out where to go for services.

"What we need is some leadership from the governor's office on down to take on the crisis that is present today and re-engineer it," Lowe said. "Maybe if we had one health care delivery system and treated the whole person, and stopped cutting them off at the neck, that might improve the stigma discrimination. I think it's actually fed into the problem."

Not a bed in sight

One glaring hole in Santa Clara County's mental health services is the dearth of hospital services for children and teens in crisis.

In emergency cases, where children are a danger to themselves and others, many local families often face the gut-wrenching decision to send their children as far away as Sacramento, often for an entire week of inpatient treatment, because Santa Clara County fails to offer a nearby alternative.

And while county officials have acknowledged the problem and considered how to fill this crucial gap in health care services since 2011, the region's most vulnerable children are still being directed out of the area for inpatient psychiatric services.

Sarah Gentile, a Los Altos parent who has made a name for herself as a mental health advocate in Santa Clara County, said she has been assisting families as an advisory resource for years, helping navigate through a confusing and spotty network of mental health services. She said one of the "heartbreaking truths" that comes up time and again is that the younger and sicker a child is, the fewer the resources available in Santa Clara County.

Inpatient psychiatric facilities play an important role, providing treatment in a secure and heavily supervised environment for patients suffering acute psychiatric symptoms including psychosis or "active suicidality" -- behaviors that put themselves and others at high risk of harm. Many of the patients who are admitted are compelled via a "5150" involuntary psychiatric hold.

Despite having a life-saving role, psychiatric beds are hard to come by -- particularly for children and teens. Up until last year, Santa Clara County had zero psychiatric beds for children and adolescents, despite a population of more than 1.9 million residents. It was by far the largest county without any beds for kids, with Kern County in second place with 882,000 residents, according to data compiled by the California Hospital Association.

Since then, Santa Clara County has approved a contract with a new psychiatric hospital, San Jose Behavioral Health, to offer six of its beds for child and adolescent patients, though the deal was seen as a stopgap measure until a dedicated facility for children and teens is established. The facility still doesn't take children 12 or younger, who make up a small portion of the total patients.

Parents with teenagers in Santa Clara County often find themselves having to send their children to the Mills-Peninsula Inpatient Adolescent Department in San Mateo, while younger children are often sent to Sacramento, Gentile said. Throw in any kind of co-occurring physical condition or a mental health disorder like schizophrenia, she said, and families very likely have to go out of state for care.

Gentile said her family grappled with the problem in 2015, when her son had a major depressive episode and landed in the hospital. She said it was bizarre to hear that a world-renowned organization like Lucile Packard Children's Hospital, just a short drive from her home, couldn't serve her child.

"I was in disbelief that a children's hospital with Stanford's resources and reputation would turn away critically ill children who need mental health treatment," she said.

Frustration over the poor access to mental health care bubbled over at an El Camino Hospital board meeting in 2016, with several parents making an emotional appeal for youth inpatient psychiatric care. One mother said she was "filled with despair and fear" that she had nowhere to go if her child with special needs ever has a depressive episode, and called it "incomprehensible" that prestigious award-winning hospitals in the region would fall short of providing services to children in the same situation.

Deborah Scharfetter, a parent of two, recounted how her teenage daughter had gone through five months of severe depression -- too sick to attend school and too ashamed and embarrassed to admit her situation -- before deciding she needed to go to the hospital.

"When she was at tremendous risk of self-harm, of death, her community sent her away, the hospital -- this hospital, where she was born -- did not help her recover, they sent her away," she said. "You sent her away."

The problem is pervasive in California, with state laws and changing attitudes toward involuntary psychiatric care driving down the number of psychiatric beds going back decades, said Lowe of the California Hospital Association. The total number of beds sank from 9,353 in 1995 to 6,702 in 2016, a nearly 30 percent drop despite the state's rising population. Although experts recommend one psychiatric bed for every 2,000 people, in California it's closer to one for every 5,900 people.

Lowe said the anemic number of child and adolescent psychiatric beds -- around 650 in a state with 39 million people -- is likely linked to the high cost of staffing. Others suggest it has more to do with patient numbers that fluctuate throughout the year, with a big drop during summer.

It also stems from having 58 counties all administering separate Medi-Cal contracts with different terms, requirements and constraints, Lowe said. Sacramento isn't just a destination for Santa Clara County kids in crisis; it pulls from more than half the counties in the state.

"In Sacramento County we have three free-standing acute hospitals, and they provide care and services to over 30 of our counties," she said. "They have 30 different billing systems that they have to follow. The administrative burden is extreme."

Gentile said she finds the whole situation unconscionable, given the economic prosperity in the region and huge sums of public and private money earmarked for mental health services.

"The fact that neither Santa Clara County nor Stanford provide care for these children while acquiring millions of dollars specifically to treat mental illness is especially shameful," she said.

A swing and a miss

So what exactly is the holdup in Santa Clara County? Concrete efforts to establish an inpatient psychiatric facility for children in the county go at least as far back as 2011 -- not long after a youth suicide cluster in Palo Alto -- when the county sought bids for a facility to serve the more than 600 kids who show up in emergency rooms each year in need of psychiatric hospital care. The request for proposals (RFP) fell flat due to "budget constraints" at the time, according to county reports.

The idea was resurrected in June 2015, when Simitian announced he would spearhead an effort to meet the "significant needs for inpatient psychiatric care for kids." Simitian's proposal essentially called out the practice of sending hundreds of youth to Alameda, Contra Costa and Sacramento counties for treatment as problematic, and vowed to find ways to get the inpatient unit built.

"I'm worried that having this treatment option so far away deters kids and families from seeking the help they need," Simitian said at the time. "We know that these beds are an integral and essential part of the continuum of care. The next step is to figure out how to get the best possible help for these kids closer to home."

Several hospitals and nonprofits laid out their visions, with the most ambitious coming from a proposed joint venture between El Camino Hospital, Kaiser Permanente and Lucile Packard Children's Hospital. The idea, floated in April 2016, described an 18-bed facility built on the El Camino campus serving youth ages 12 to 17, with an opening date slated for 2020. The vision included step-down services like partial hospitalization and intensive outpatient services so patients could ease back into a normal life after being discharged.

Despite the fanfare, the idea fell flat, and county officials at the time did little to explain why it fizzled. A press release from Simitian's office late last year stated that the process had simply ended "without a successful bid" in January 2017.

Behavioral Health Services Director Toni Tullys told the Voice that one organization did submit a proposal, but subsequent discussions with county staff revealed that it needed almost twice as much money as the $1.8 million allotted -- about $3.5 million -- to get the psychiatric unit off the ground. The county denied the request for extra money and the RFP was closed with no contract.

The tepid response could have been due to the RFP itself, which made a pretty big ask without much compensation. The county stated it was seeking a 20-bed facility that could serve ages 4 to 17, a huge range of ages that don't commingle very well.

The RFP also stated that the provider would need to have a child psychiatrist available 24 hours a day, along with a pediatrician, psychiatric nurse, social workers or marriage and family therapists, a nutritionist, a pharmacist, a behaviorist and therapists qualified to assess and treat substance abuse. The contract needed to be ready to go live starting Oct. 1 that year -- five months after the RFP was submitted -- and the county was willing to pay $1.8 million for the first year of operation.

One interested party referred to it as "a recipe for bankruptcy."

A new proposal, due to appear in front of the Board of Supervisors this month, will instead propose having Santa Clara County take the lead, though it's unclear when the facility would finally be built.

In the aftermath of the failed RFP, Simitian said he gathered representatives from all the major hospitals in the area, including Kaiser, El Camino and Stanford, and asked them frankly what it was going to take to get the inpatient unit built.

"Ultimately what became apparent was that everybody wanted to do their part, but nobody felt they could take the entire challenge on themselves or take the lead with a new facility," he said.

Gentile said she was frustrated with the county's slow response to the problem, but was likewise baffled that no one else had stepped up to the plate. Stanford just opened its new children's hospital last year, doubling the square footage and number of beds, but the expansion plans didn't include a single bed for inpatient psychiatric care, she said.

Tiffany Maciel, whose search for psychiatric help for her young son turned into a full-time job that took four years, said she questioned the idea that the start-up costs for an inpatient psychiatric unit exceeded what hospitals could pay, particularly when Stanford had just wrapped up a $1.2 billion expansion. It rings hollow, she said, when Stanford envisions itself as a partner with a county-led psychiatric unit rather than taking the lead.

"Most parents who are involved are pretty angry at Stanford and the new pediatric facility that doesn't have a single pediatric mental health bed for kids in crises," Maciel said. "When the county put out the RFP they said couldn't raise the money to build it, but how much did Stanford spend on their new facility?"

A funding logjam

The consensus among public officials and the medical community is that mental health services are underfunded, and that taxpayer dollars could go a long way toward supporting early intervention and new, innovative approaches to fill -- or at least reduce -- big gaps in access to effective services.

It's all the more surprising, in light of a major state audit report this year revealing that counties across California have failed for years to spend money earmarked for mental health services. The audit concluded that the counties had amassed $2.5 billion in unspent funding, some of which had been sitting in bank accounts for a decade. Santa Clara County is no exception, with a total of $133 million in unspent funds.

Individual counties receive funds through California's Mental Health Services Act (MHSA), an income tax measure passed by voters in 2004, to spend on mental health programs as each county sees fit. The money is broken up into three categories to ensure counties invest in a range of services: community services and support, innovative programs and prevention and early intervention. The act now generates one-fourth of all state dollars devoted to mental health.

The MHSA follows the same mold that the state has been following for decades, which puts individual counties in the driver's seat for spending public dollars on mental health services. But with so much money going unspent, some state lawmakers are questioning the wisdom of a hands-off approach, seeking instead to claw back funds and hold counties accountable for a backlog that shouldn't exist.

State officials say the problem could be blamed, at least in part, on lax oversight and an unwillingness to compel counties to spend close to $2.2 billion in funds each year. The MHSA includes language that allows California to "revert" unspent money back to the state after three years, but state health officials have declined to do so since at least 2008, according to a recent testimony to state lawmakers by Toby Ewing, executive director of the Mental Health Services Oversight and Accountability Commission.

The audit found that $230 million in MHSA funds should have reverted to the state but haven't.

The majority of California counties have also failed to meet deadlines for submitting annual reports on how the money is spent, and are two or three years behind, according to the oversight committee. As of February 2017, for example, fewer than half of public agencies had filed 2014-15 spending reports, which were due by the end of December 2015. The state audit used numbers from Santa Clara County's 2014-15 annual report because the county was one of 12 agencies in the state that had yet to submit a 2015-16 annual report.

Amid the ongoing debate over forcing counties to give back unspent money, counties were not being entirely candid about the extent of money available -- oversight commission members reviewed fiscal reports and discovered large, unspent funding balances that were "not publicly revealed and discussed as part of the mandatory community planning process required of the counties," Ewing said.

Gentile said the unspent funding, to her, represented a big disparity between the rhetoric of county leaders and politicians -- that mental health care for children and youth is a top priority -- and complacency.

"I lost all hope when the state released its 2017 audit, which showed that Santa Clara County has been holding over $133 million in unspent mental health funds," she said. "I have little faith that these politicians will ever make good on their commitment to help our children."

Behavioral Health Services Director Tullys said there are "many, many reasons" for the $133 million figure in the annual report. Difficulty starting up programs, lack of guidance from the state and fluctuations in funding from one year to the next all play into the problem. Some county officials claim that restrictions and oversight requirements are too burdensome, while others complain that counties didn't get enough direction on how to spend the money.

The county also gets to hang on to some of that $133 million as "prudent" reserves of about $20 million, which arguably inflates the total amount of unspent cash.

Tullys, still relatively new to the position since joining in December 2014, said she has made it a top priority to find the "gaps" in the Mental Health Services Act. The county hired an outside firm, which Tullys described as a "crackerjack" team of experts, to spend a year sifting through all of the billing, utilization and expense papers.

The result is a recently published three-year plan -- making Santa Clara one of only two counties in the state to do a full system assessment, Tullys said -- that acts as a road map for using much of the unspent funding. Stanford's version of the Headspace program alone helps draw down $15 million from the innovation fund.

"The (firm) confirmed that there were gaps and put them into the plan. We're spending down $90 million in the first three years," she said. "Yes, there was unspent money, but we had done the assessment and now we're putting out money to new services."

California lawmakers have pushed in recent months for policy changes that would either streamline the use of MHSA funds or put the threat of reversion back on the table. Senate bill 1004, authored by state Sens. Scott Wiener and John Moorlach, proposes clear guidelines for money spent on prevention and early intervention, with a preference toward children and teens. Top priorities would include childhood trauma prevention, early detection of psychosis and mood disorders and "engagement strategies" for young adults, particularly those in college.

Senate bill 192, authored by state Sen. Jim Beall, was signed into law Sept. 10. It says all county funds subject to reversion will be sent back to the state as of July 1, 2020, and put into an account and eventually redistributed -- essentially following through on a promise made in the original language of the MHSA.

Both bills have received a mixed response, with SB 1004 catching heat from counties seeking to retain autonomy as well as from mental health advocacy groups worried that adults and the elderly would be excluded from services provided under the bill. In an op-ed penned by Wiener and MHSA author and Sacramento Mayor Darrell Steinberg, the two did not concede ground.

"We make no apologies," the opinion piece reads. "Fifty percent of serious mental illness takes root by age 14, and 75 percent by age 25. So, intervening at the earliest age possible to avoid the consequences of years of untreated illness? It's not only common sense, it is just."

This article is the second in a two-part series that was supported by a USC Annenberg Center for Health Journalism 2018 California Fellowship.

The Voice compiled a list of youth mental health resources available in Santa Clara County.

Comments

12 people like this
Posted by MV Mom
a resident of Rex Manor
on Sep 14, 2018 at 2:03 pm

In the 2000's, I was part of EMQs 24-hour mobile crisis team to assess minors at risk in the community (at their therapist's office, school, home, etc.). I would assess whether the child had serious plans for self-harm or were in a mental health crisis. The goal was to keep kids safe. After the assessment, I would either a) work with the family to create a safety plan if the determination was that the child could remain at home safely (least restrictive) or b) I would write a 5150 hold for the child/teen. It was also my job to find a bed for those kids requiring a hold to keep them safe. Finding a bed was often a huge problem. We had a list of facilities that we worked with, all were out-of-county, and often all beds were full. This has been a consistent problem for many, many years. We are not meeting the mental health needs of kids in our communities. Preventative care, ongoing mental health therapy and support, and crisis care are severely lacking for children. This is a scary and sad environment for families looking to find the resources they need to support their children. Mental health care is health care, and if we want children to survive and thrive, I really hope we can work together to figure out how to meet these needs and fund the services.


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