By Claudia Boyd-Barrett
July 18, 2018

See Original Post

Adela Carranco was just 11 years old when her mother discovered she was
planning to kill herself.

Her suicidal intentions were tapped out in cold detail on her cell phone,
from options for ending her life-take pills, get run over, or slit her
wrists-to notes saying goodbye to loved ones.

For years, Adela's mom, Olga Maldonado, had wondered if her daughter was in
some kind of distress. Starting when she was a baby, she'd panic anytime she
was left alone. And once she hit puberty, Adela became routinely aggressive
and withdrawn. But each time Maldonado voiced her concerns to a doctor, they
were dismissed, she said.

Then Maldonado started noticing deep gashes on Adela's wrists. She searched
her daughter's phone and found the suicide plans. A visit to a crisis center
and later a therapist produced a diagnosis: depression and psychosis.

"I was shocked. It was a lot of emotions trying to understand what was going
on in her mind," said Maldonado, who lives in San Francisco. "I feel like if
she had been assessed earlier, the outcome would have been better."

Mental health disorders in childhood and adolescence are extremely common.
Studies estimate
between 13 and 20 percent of American children experience a mental disorder
in a given year. National survey
data indicates that one in
five children and teens will suffer a mental disorder that severely impairs
daily life. Common mental illnesses include anxiety disorder, depression and
attention deficit hyperactivity disorder (ADHD).

Yet research also indicates that many children in need of mental health
services don't get treatment, or suffer for years before being diagnosed. In
California, the state's key program for providing mental health treatment to
low-income children and youth under age 21 serves just a fraction of those
estimated to need help, statistics show. And while the pool of children
potentially eligible for these services has expanded under the Affordable
Care Act, the percentage of kids actually receiving help has declined since
2010, a California Health Report analysis has found.

"Kids aren't getting what they need," said Alex Briscoe, former director of
the Alameda County Health Care Services Agency and now a consultant on
health policy issues for a number of California foundations. "There are
children in major counties in California with millions of residents where
low-income children are not getting a service that is entitled under federal
law, and a service that we now know is perhaps the most essential to their
healthy growth and development."

More Youth in Crisis, but Declining Access Rates

California provides the largest portion of its mental health care services
for children and youth through a state and federally funded program called
Medi-Cal Specialty Mental Health Services (SMHS). The program serves
children enrolled in Medi-Cal, the state's low-income health insurance plan,
including foster youth and children involved in the juvenile justice system.
More than half of California's children are covered by Medi-Cal.

The way California delivers mental health care is unusual. Specialty Mental
Health Services are "carved out" from other Medi-Cal services and
administered by county mental health departments. That means people seeking
these services must go through their county to get them, instead of through
a Medi-Cal managed-care plan, which handles most other types of care.
California is one of only three states in the country that still largely
organizes mental health care in this way, said Briscoe. Other states have
more integrated systems where the same entity administers both physical and
mental health benefits covered by Medi-Cal, he explained.

Since 2014, California has begun to integrate some services for mild to
moderate mental health problems into Medi-Cal managed care plans. However,
very few children are accessing these services. According to the state
Department of Health Care Services, which oversees Medi-Cal, only about
84,000 children and youth under age 21 received mental health services
through managed-care plans in fiscal year 2016 to 2017. That's just 1.5
percent of the almost 6 million children enrolled in Medi-Cal managed care.

Meanwhile, under federal law, most children and teens enrolled in Medi-Cal
who have mental health disorders are eligible for specialty mental health
services through the county, regardless of the severity of their complaints.

Specialty Mental Health Services cover treatment for a wide range of
ailments, such as attention deficit disorders, depression, anxiety, eating
disorders, antisocial personality problems, bipolar disorder and
schizophrenia. Children and teens often receive multiple services through
the program, depending on their needs. Some kids are hospitalized because of
a mental health crisis, but are later referred for outpatient therapy or
psychiatry. Adela, for example, has been to taken to psychiatric hospital
several times, but also attended an adolescent day program for children with
mental health issues, and received psychiatry, medication and talk therapy.

The Department of Health Care Services tracks the

percentage of Medi-Cal enrolled children under age 21 who receive Specialty
Mental Health Services each fiscal year.

DHCS tracks two types of access rates: those counting youth who had at least
one contact with the SMHS system in a given year, and those who had five or
more contacts or "visits."

Both rates reveal that consistently low numbers of children and teens are
recieving mental health services, even by the most conservative standards.
Advocates said the low access rate is particularly alarming for this
population because poverty has been shown to increase children's likelihood
of needing mental health care.

In the 2016 to 2017 fiscal year, the latest year for which statewide data is
available, 4.1 percent of Medi-Cal-enrolled children statewide came into
contact with the SMHS system at least once. Six years prior, during the 2011
to 2012 fiscal year, 4.8 percent of Medi-Cal enrolled children accessed the
program, the state data shows. The percentage drop is small, but represents
approximately 43,000 children who potentially didn't get care.

The rate sinks even lower for "five or more visits." This rate, researchers
agreed, most accurately captures the percentage of children who actually
receive care, because it takes more than one contact with the system to get
an appointment, be assessed and start receiving treatment, Thull explained.

"One visit just means that they just contacted somebody once. It could be
they called a crisis line, or showed up to make an appointment and never
came back," Thull said.

Since 2011, the earliest year for which data is available, the statewide
access rate for "five or more visits" for SMHS has declined from 3.7 percent
of children enrolled in Medi-Cal to 3.1 percent in the 2016 to 2017 fiscal
year. Again, this decline represents more than 40,000 children and youth who
would be receiving services had the access rate remained at the 2011 level.
That's without considering the thousands more children who likely need
mental health services but don't receive them, according to epidemiological
studies.

Given the national estimate for mental disorder prevalence in children and
youth, access rates in California should be closer to 20 percent, Thull
said. But even within the narrow scope of children with the highest-level
mental health needs, access falls short. A recent report by the California
Health Care Foundation
estimated 7.6 percent of children in California-or one in 13-has a
"serious emotional disturbance," and the rate climbs to 10 percent among the
state's poorest children.

Briscoe, in Alameda County, called the DHCS measurements "an accurate
representation of the underperformance of our system."

Are Counties Sitting on Funding?

It's not just the low percentage of children served that's a problem. Mental
health advocates said the state should be doing more to collect data on
whether children are being served in a timely manner, and whether the
treatment they get actually leads to improvement.

Patrick Garner, a children's mental health expert and the founder of the
group Young Minds Advocacy in San Francisco, said the state fails to collect
enough data on the quality of the services kids receive.

"There's very little information out there that tells us how well or how
good are the services that are provided," he said. "There's some information
out there that suggests there are systemic problems."

One of those problems appears to be an over-reliance on crisis care, rather
than longer-term preventative and supportive services. Hospitalizations for
mental health issues among children ages 5 to 19 have risen steadily since
2007, according to
Kidsdata.org. Meanwhile, the number of
hours children spent in crisis stabilization increased more than 20 percent
between 2011 and 2017 under SMHS, state data shows. At the same time, state
data shows that the amount of time dedicated to services that can prevent a
mental-health crisis-including therapeutic services, in-home behavioral
health support and case management-has been decreasing. Nevertheless, in
some categories of support services, more children overall are getting this
type of longer-term help.

Melinda Bird, senior litigation counsel for Disability Rights California,
said waiting until children are in crisis to provide them with mental health
care is both expensive and ineffective. Counties are required to cover
numerous non-crisis SMHS Services, but many haven't built out the
infrastructure needed to provide them, she said.

"The primary way people get services is through hospitalization," she said.
"That is a traumatic process for children and their parents, and it doesn't
fix the problem."

The access rates also point to racial disparities in who gets served,
particularly among Latinos. While Hispanics make up half of all Medi-Cal
enrollees, the most recent "five visit" rate shows only 3 percent received
SMHS. That compares to an almost 4 percent rate for white children, even
though they account for just one in 10 Medi-Cal recipients. Reviewers noted
the disparity in a 2017 external
report on
SMHS and called on state officials and other stakeholders to take action.
The state Health Care Services department did not respond to a request for
comment on this matter.

Health officials, researchers and advocates point to a variety of factors
that could be stymieing children's access to mental health care, including
funding challenges, administrative issues and stigma. Some advocates cited
the state's decision in 2011 to reorganize funding for mental health
services by giving counties a fixed amount of money for SMHS each year.
Critics said the move restricted county spending on SMHS even though the
program is federally mandated to serve all children who need the services,
regardless of cost.

SMHS are funded through a combination of federal, state and local funds. In
the 2016 to 2017 fiscal year, counties spent almost $2 billion on the
services for children, up from about $1.6 billion in 2013 to 2014, according
to state figures. Approximately half of the funds are reimbursed by the
federal Centers for Medicare and Medicaid Services. The rest comes from
state distributions to counties of sales tax, vehicle license fee and income
tax revenue. Some counties also pitch in their own funds to cover services.

Yet while counties are spending more on SMHS, they're also receiving more
state money to help pay for them. Funding for California's mental health
system more than doubled between 2008 and 2017, according to the California
Health Care Foundation. That includes mental health funds the state
"realigned" to counties in 1991 and 2011, which have risen steadily over the
past five years.

Gardner said the declining access rates don't make sense given the increase
in overall funding. He questioned whether counties have funds they are not
spending. An auditor's report earlier this year found that counties have
failed to spend $2.5 billion in taxpayer money for mental health care
generated from Proposition 63, which is used for certain mental health
services but generally not SMHS. There has been no similar state audit of
SMHS spending. The Health Care Services agency said it does not produce
documents laying out how much SMHS funding counties receive, spend and have
in reserves each year.

Thull and Gardner said the state is not doing enough to hold counties
accountable for low access rates and ensure they provide children with
quality services. Fragmentation of mental health services also makes it hard
for families to figure out where and how to get care, they said.

Additionally, a dire shortage of mental health professionals, particularly
child psychiatrists, is making it difficult to meet increasing demand for
services, according to the 2017 external review of the SMHS program.
California has
fewer than 1,150 child and adolescent psychiatrists to
serve more than 9 million children in the state.

'They're Not Alone'

In an email, Health Care Services spokeswoman Carol Sloan said some of the
decline in access rates can be attributed to small, year-to-year
fluctuations in the number of children accessing care in small, rural
counties. Additionally, new children enrolling in Medi-Cal as a result of
eligibility expansion under the Affordable Care Act and the transition of
the Healthy Families program into Medi-Cal in 2013 and 2014 are not
accessing Specialty Mental Health Services at the same rate as other
children, she wrote.

"Overall, the majority of these counties were still excelling" in terms of
access rates, she wrote, noting that several counties have rates that exceed
the state average.

Sloan said the agency is also implementing new federal requirements for
county mental health plans that it expects will improve access, quality and
timeliness of care. The department has also increased its monitoring of
county health plans and is providing them with additional technical
assistance, she wrote.

Kiran Savage-Sangwan, Health Integration Policy Director with the California
Pan-Ethnic Health Network, said she doesn't buy the explanation that new
Medi-Cal enrollees need less mental health care.

In fact, some data suggests the opposite, "because they're people who
haven't previously had access to health care necessarily, they're low-income
and have some of those factors that can be challenging," she said.

Advocates are hopeful two new assessment tools being implemented this month
by the Health Care Services department will begin to provide a clearer
picture of the program's quality. Counties will now be required to measure
whether children's mental health is improving as a result of the services
they receive, although it will take some time before this data can be
analyzed.

As for Adela, these days she continues to wrestle with mental illness, but
has received therapy, psychiatry and medication through Medi-Cal to help
stabilize her condition. Now 18 years old, she said she hopes to become an
advocate for other children and young people facing similar struggles.

"Every chance that I get, I try to talk to people and try to tell them my
story and tell them if they're going through something they're not alone,"
she said. "When I was younger I didn't know that anyone else was going
through anything like this."

Maldonado, Adela's mother, is working to create a support group for parents
of children with mental illness. She works for a non-profit organization in
San Francisco called Support for Families of Children with Disabilities, and
said she still frequently encounters families with children who appear to
have undiagnosed mental health issues.

"I don't think children need to be at the point of committing suicide to get
services," she said.

This article was produced as a project for the
2017 California Data Fellowship, a program of the USC Annenberg
Center for Health
JournalismBy Claudia Boyd-Barrett

July 18, 2018

 

Adela Carranco was just 11 years old when her mother discovered she was

planning to kill herself.

 

Her suicidal intentions were tapped out in cold detail on her cell phone,

from options for ending her life-take pills, get run over, or slit her

wrists-to notes saying goodbye to loved ones.

 

For years, Adela's mom, Olga Maldonado, had wondered if her daughter was in

some kind of distress. Starting when she was a baby, she'd panic anytime she

was left alone. And once she hit puberty, Adela became routinely aggressive

and withdrawn. But each time Maldonado voiced her concerns to a doctor, they

were dismissed, she said.

 

Then Maldonado started noticing deep gashes on Adela's wrists. She searched

her daughter's phone and found the suicide plans. A visit to a crisis center

and later a therapist produced a diagnosis: depression and psychosis.

 

"I was shocked. It was a lot of emotions trying to understand what was going

on in her mind," said Maldonado, who lives in San Francisco. "I feel like if

she had been assessed earlier, the outcome would have been better."

 

Mental health disorders in childhood and adolescence are extremely common.

Studies   estimate

between 13 and 20 percent of American children experience a mental disorder

in a given year. National survey

 data indicates that one in

five children and teens will suffer a mental disorder that severely impairs

daily life. Common mental illnesses include anxiety disorder, depression and

attention deficit hyperactivity disorder (ADHD).

 

Yet research also indicates that many children in need of mental health

services don't get treatment, or suffer for years before being diagnosed. In

California, the state's key program for providing mental health treatment to

low-income children and youth under age 21 serves just a fraction of those

estimated to need help, statistics show. And while the pool of children

potentially eligible for these services has expanded under the Affordable

Care Act, the percentage of kids actually receiving help has declined since

2010, a California Health Report analysis has found.

 

"Kids aren't getting what they need," said Alex Briscoe, former director of

the Alameda County Health Care Services Agency and now a consultant on

health policy issues for a number of California foundations. "There are

children in major counties in California with millions of residents where

low-income children are not getting a service that is entitled under federal

law, and a service that we now know is perhaps the most essential to their

healthy growth and development."

 

More Youth in Crisis, but Declining Access Rates

 

California provides the largest portion of its mental health care services

for children and youth through a state and federally funded program called

Medi-Cal Specialty Mental Health Services (SMHS). The program serves

children enrolled in Medi-Cal, the state's low-income health insurance plan,

including foster youth and children involved in the juvenile justice system.

More than half of California's children are covered by Medi-Cal.

 

The way California delivers mental health care is unusual. Specialty Mental

Health Services are "carved out" from other Medi-Cal services and

administered by county mental health departments. That means people seeking

these services must go through their county to get them, instead of through

a Medi-Cal managed-care plan, which handles most other types of care.

California is one of only three states in the country that still largely

organizes mental health care in this way, said Briscoe. Other states have

more integrated systems where the same entity administers both physical and

mental health benefits covered by Medi-Cal, he explained.

 

Since 2014, California has begun to integrate some services for mild to

moderate mental health problems into Medi-Cal managed care plans. However,

very few children are accessing these services. According to the state

Department of Health Care Services, which oversees Medi-Cal, only about

84,000 children and youth under age 21 received mental health services

through managed-care plans in fiscal year 2016 to 2017. That's just 1.5

percent of the almost 6 million children enrolled in Medi-Cal managed care.

 

Meanwhile, under federal law, most children and teens enrolled in Medi-Cal

who have mental health disorders are eligible for specialty mental health

services through the county, regardless of the severity of their complaints.

 

Specialty Mental Health Services cover treatment for a wide range of

ailments, such as attention deficit disorders, depression, anxiety, eating

disorders, antisocial personality problems, bipolar disorder and

schizophrenia. Children and teens often receive multiple services through

the program, depending on their needs. Some kids are hospitalized because of

a mental health crisis, but are later referred for outpatient therapy or

psychiatry. Adela, for example, has been to taken to psychiatric hospital

several times, but also attended an adolescent day program for children with

mental health issues, and received psychiatry, medication and talk therapy.

 

The Department of Health Care Services tracks the

 

percentage of Medi-Cal enrolled children under age 21 who receive Specialty

Mental Health Services each fiscal year.

 

DHCS tracks two types of access rates: those counting youth who had at least

one contact with the SMHS system in a given year, and those who had five or

more contacts or "visits."

 

Both rates reveal that consistently low numbers of children and teens are

recieving mental health services, even by the most conservative standards.

Advocates said the low access rate is particularly alarming for this

population because poverty has been shown to increase children's likelihood

of needing mental health care.

 

In the 2016 to 2017 fiscal year, the latest year for which statewide data is

available, 4.1 percent of Medi-Cal-enrolled children statewide came into

contact with the SMHS system at least once. Six years prior, during the 2011

to 2012 fiscal year, 4.8 percent of Medi-Cal enrolled children accessed the

program, the state data shows. The percentage drop is small, but represents

approximately 43,000 children who potentially didn't get care.

 

The rate sinks even lower for "five or more visits." This rate, researchers

agreed, most accurately captures the percentage of children who actually

receive care, because it takes more than one contact with the system to get

an appointment, be assessed and start receiving treatment, Thull explained.

 

"One visit just means that they just contacted somebody once. It could be

they called a crisis line, or showed up to make an appointment and never

came back," Thull said.

 

Since 2011, the earliest year for which data is available, the statewide

access rate for "five or more visits" for SMHS has declined from 3.7 percent

of children enrolled in Medi-Cal to 3.1 percent in the 2016 to 2017 fiscal

year. Again, this decline represents more than 40,000 children and youth who

would be receiving services had the access rate remained at the 2011 level.

That's without considering the thousands more children who likely need

mental health services but don't receive them, according to epidemiological

studies.

 

Given the national estimate for mental disorder prevalence in children and

youth, access rates in California should be closer to 20 percent, Thull

said. But even within the narrow scope of children with the highest-level

mental health needs, access falls short. A recent report by the California

Health Care Foundation

 estimated 7.6 percent of children in California-or one in 13-has a

"serious emotional disturbance," and the rate climbs to 10 percent among the

state's poorest children.

 

Briscoe, in Alameda County, called the DHCS measurements "an accurate

representation of the underperformance of our system."

 

Are Counties Sitting on Funding?

 

It's not just the low percentage of children served that's a problem. Mental

health advocates said the state should be doing more to collect data on

whether children are being served in a timely manner, and whether the

treatment they get actually leads to improvement.

 

Patrick Garner, a children's mental health expert and the founder of the

group Young Minds Advocacy in San Francisco, said the state fails to collect

enough data on the quality of the services kids receive.

 

"There's very little information out there that tells us how well or how

good are the services that are provided," he said. "There's some information

out there that suggests there are systemic problems."

 

One of those problems appears to be an over-reliance on crisis care, rather

than longer-term preventative and supportive services. Hospitalizations for

mental health issues among children ages 5 to 19 have risen steadily since

2007, according to

 Kidsdata.org. Meanwhile, the number of

hours children spent in crisis stabilization increased more than 20 percent

between 2011 and 2017 under SMHS, state data shows. At the same time, state

data shows that the amount of time dedicated to services that can prevent a

mental-health crisis-including therapeutic services, in-home behavioral

health support and case management-has been decreasing. Nevertheless, in

some categories of support services, more children overall are getting this

type of longer-term help.

 

Melinda Bird, senior litigation counsel for Disability Rights California,

said waiting until children are in crisis to provide them with mental health

care is both expensive and ineffective. Counties are required to cover

numerous non-crisis SMHS Services, but many haven't built out the

infrastructure needed to provide them, she said.

 

"The primary way people get services is through hospitalization," she said.

"That is a traumatic process for children and their parents, and it doesn't

fix the problem."

 

The access rates also point to racial disparities in who gets served,

particularly among Latinos. While Hispanics make up half of all Medi-Cal

enrollees, the most recent "five visit" rate shows only 3 percent received

SMHS. That compares to an almost 4 percent rate for white children, even

though they account for just one in 10 Medi-Cal recipients. Reviewers noted

the disparity in a 2017 external

 report on

SMHS and called on state officials and other stakeholders to take action.

The state Health Care Services department did not respond to a request for

comment on this matter.

 

Health officials, researchers and advocates point to a variety of factors

that could be stymieing children's access to mental health care, including

funding challenges, administrative issues and stigma. Some advocates cited

the state's decision in 2011 to reorganize funding for mental health

services by giving counties a fixed amount of money for SMHS each year.

Critics said the move restricted county spending on SMHS even though the

program is federally mandated to serve all children who need the services,

regardless of cost.

 

SMHS are funded through a combination of federal, state and local funds. In

the 2016 to 2017 fiscal year, counties spent almost $2 billion on the

services for children, up from about $1.6 billion in 2013 to 2014, according

to state figures. Approximately half of the funds are reimbursed by the

federal Centers for Medicare and Medicaid Services. The rest comes from

state distributions to counties of sales tax, vehicle license fee and income

tax revenue. Some counties also pitch in their own funds to cover services.

 

Yet while counties are spending more on SMHS, they're also receiving more

state money to help pay for them. Funding for California's mental health

system more than doubled between 2008 and 2017, according to the California

Health Care Foundation. That includes mental health funds the state

"realigned" to counties in 1991 and 2011, which have risen steadily over the

past five years.

 

Gardner said the declining access rates don't make sense given the increase

in overall funding. He questioned whether counties have funds they are not

spending. An auditor's report earlier this year found that counties have

failed to spend $2.5 billion in taxpayer money for mental health care

generated from Proposition 63, which is used for certain mental health

services but generally not SMHS. There has been no similar state audit of

SMHS spending. The Health Care Services agency said it does not produce

documents laying out how much SMHS funding counties receive, spend and have

in reserves each year.

 

Thull and Gardner said the state is not doing enough to hold counties

accountable for low access rates and ensure they provide children with

quality services. Fragmentation of mental health services also makes it hard

for families to figure out where and how to get care, they said.

 

Additionally, a dire shortage of mental health professionals, particularly

child psychiatrists, is making it difficult to meet increasing demand for

services, according to the 2017 external review of the SMHS program.

California has

 fewer than 1,150 child and adolescent psychiatrists to

serve more than 9 million children in the state.

 

'They're Not Alone'

 

In an email, Health Care Services spokeswoman Carol Sloan said some of the

decline in access rates can be attributed to small, year-to-year

fluctuations in the number of children accessing care in small, rural

counties. Additionally, new children enrolling in Medi-Cal as a result of

eligibility expansion under the Affordable Care Act and the transition of

the Healthy Families program into Medi-Cal in 2013 and 2014 are not

accessing Specialty Mental Health Services at the same rate as other

children, she wrote.

 

"Overall, the majority of these counties were still excelling" in terms of

access rates, she wrote, noting that several counties have rates that exceed

the state average.

 

Sloan said the agency is also implementing new federal requirements for

county mental health plans that it expects will improve access, quality and

timeliness of care. The department has also increased its monitoring of

county health plans and is providing them with additional technical

assistance, she wrote.

 

Kiran Savage-Sangwan, Health Integration Policy Director with the California

Pan-Ethnic Health Network, said she doesn't buy the explanation that new

Medi-Cal enrollees need less mental health care.

 

In fact, some data suggests the opposite, "because they're people who

haven't previously had access to health care necessarily, they're low-income

and have some of those factors that can be challenging," she said.

 

Advocates are hopeful two new assessment tools being implemented this month

by the Health Care Services department will begin to provide a clearer

picture of the program's quality. Counties will now be required to measure

whether children's mental health is improving as a result of the services

they receive, although it will take some time before this data can be

analyzed.

 

As for Adela, these days she continues to wrestle with mental illness, but

has received therapy, psychiatry and medication through Medi-Cal to help

stabilize her condition. Now 18 years old, she said she hopes to become an

advocate for other children and young people facing similar struggles.

 

"Every chance that I get, I try to talk to people and try to tell them my

story and tell them if they're going through something they're not alone,"

she said. "When I was younger I didn't know that anyone else was going

through anything like this."

 

Maldonado, Adela's mother, is working to create a support group for parents

of children with mental illness. She works for a non-profit organization in

San Francisco called Support for Families of Children with Disabilities, and

said she still frequently encounters families with children who appear to

have undiagnosed mental health issues.

 

"I don't think children need to be at the point of committing suicide to get

services," she said.

 

This article was produced as a project for the

 2017 California Data Fellowship, a program of the USC Annenberg

 Center for Health

Journalism..

By Claudia Boyd-BarrettJuly 18, 2018
Adela Carranco was just 11 years old when her mother discovered she wasplanning to kill herself.
Her suicidal intentions were tapped out in cold detail on her cell phone,from options for ending her life-take pills, get run over, or slit herwrists-to notes saying goodbye to loved ones.
For years, Adela's mom, Olga Maldonado, had wondered if her daughter was insome kind of distress. Starting when she was a baby, she'd panic anytime shewas left alone. And once she hit puberty, Adela became routinely aggressiveand withdrawn. But each time Maldonado voiced her concerns to a doctor, theywere dismissed, she said.
Then Maldonado started noticing deep gashes on Adela's wrists. She searchedher daughter's phone and found the suicide plans. A visit to a crisis centerand later a therapist produced a diagnosis: depression and psychosis.
"I was shocked. It was a lot of emotions trying to understand what was goingon in her mind," said Maldonado, who lives in San Francisco. "I feel like ifshe had been assessed earlier, the outcome would have been better."
Mental health disorders in childhood and adolescence are extremely common.Studies   estimatebetween 13 and 20 percent of American children experience a mental disorderin a given year. National survey data indicates that one infive children and teens will suffer a mental disorder that severely impairsdaily life. Common mental illnesses include anxiety disorder, depression andattention deficit hyperactivity disorder (ADHD).
Yet research also indicates that many children in need of mental healthservices don't get treatment, or suffer for years before being diagnosed. InCalifornia, the state's key program for providing mental health treatment tolow-income children and youth under age 21 serves just a fraction of thoseestimated to need help, statistics show. And while the pool of childrenpotentially eligible for these services has expanded under the AffordableCare Act, the percentage of kids actually receiving help has declined since2010, a California Health Report analysis has found.
"Kids aren't getting what they need," said Alex Briscoe, former director ofthe Alameda County Health Care Services Agency and now a consultant onhealth policy issues for a number of California foundations. "There arechildren in major counties in California with millions of residents wherelow-income children are not getting a service that is entitled under federallaw, and a service that we now know is perhaps the most essential to theirhealthy growth and development."
More Youth in Crisis, but Declining Access Rates
California provides the largest portion of its mental health care servicesfor children and youth through a state and federally funded program calledMedi-Cal Specialty Mental Health Services (SMHS). The program serveschildren enrolled in Medi-Cal, the state's low-income health insurance plan,including foster youth and children involved in the juvenile justice system.More than half of California's children are covered by Medi-Cal.
The way California delivers mental health care is unusual. Specialty MentalHealth Services are "carved out" from other Medi-Cal services andadministered by county mental health departments. That means people seekingthese services must go through their county to get them, instead of througha Medi-Cal managed-care plan, which handles most other types of care.California is one of only three states in the country that still largelyorganizes mental health care in this way, said Briscoe. Other states havemore integrated systems where the same entity administers both physical andmental health benefits covered by Medi-Cal, he explained.
Since 2014, California has begun to integrate some services for mild tomoderate mental health problems into Medi-Cal managed care plans. However,very few children are accessing these services. According to the stateDepartment of Health Care Services, which oversees Medi-Cal, only about84,000 children and youth under age 21 received mental health servicesthrough managed-care plans in fiscal year 2016 to 2017. That's just 1.5percent of the almost 6 million children enrolled in Medi-Cal managed care.
Meanwhile, under federal law, most children and teens enrolled in Medi-Calwho have mental health disorders are eligible for specialty mental healthservices through the county, regardless of the severity of their complaints.
Specialty Mental Health Services cover treatment for a wide range ofailments, such as attention deficit disorders, depression, anxiety, eatingdisorders, antisocial personality problems, bipolar disorder andschizophrenia. Children and teens often receive multiple services throughthe program, depending on their needs. Some kids are hospitalized because ofa mental health crisis, but are later referred for outpatient therapy orpsychiatry. Adela, for example, has been to taken to psychiatric hospitalseveral times, but also attended an adolescent day program for children withmental health issues, and received psychiatry, medication and talk therapy.
The Department of Health Care Services tracks the
percentage of Medi-Cal enrolled children under age 21 who receive SpecialtyMental Health Services each fiscal year.
DHCS tracks two types of access rates: those counting youth who had at leastone contact with the SMHS system in a given year, and those who had five ormore contacts or "visits."
Both rates reveal that consistently low numbers of children and teens arerecieving mental health services, even by the most conservative standards.Advocates said the low access rate is particularly alarming for thispopulation because poverty has been shown to increase children's likelihoodof needing mental health care.
In the 2016 to 2017 fiscal year, the latest year for which statewide data isavailable, 4.1 percent of Medi-Cal-enrolled children statewide came intocontact with the SMHS system at least once. Six years prior, during the 2011to 2012 fiscal year, 4.8 percent of Medi-Cal enrolled children accessed theprogram, the state data shows. The percentage drop is small, but representsapproximately 43,000 children who potentially didn't get care.
The rate sinks even lower for "five or more visits." This rate, researchersagreed, most accurately captures the percentage of children who actuallyreceive care, because it takes more than one contact with the system to getan appointment, be assessed and start receiving treatment, Thull explained.
"One visit just means that they just contacted somebody once. It could bethey called a crisis line, or showed up to make an appointment and nevercame back," Thull said.
Since 2011, the earliest year for which data is available, the statewideaccess rate for "five or more visits" for SMHS has declined from 3.7 percentof children enrolled in Medi-Cal to 3.1 percent in the 2016 to 2017 fiscalyear. Again, this decline represents more than 40,000 children and youth whowould be receiving services had the access rate remained at the 2011 level.That's without considering the thousands more children who likely needmental health services but don't receive them, according to epidemiologicalstudies.
Given the national estimate for mental disorder prevalence in children andyouth, access rates in California should be closer to 20 percent, Thullsaid. But even within the narrow scope of children with the highest-levelmental health needs, access falls short. A recent report by the CaliforniaHealth Care Foundation estimated 7.6 percent of children in California-or one in 13-has a"serious emotional disturbance," and the rate climbs to 10 percent among thestate's poorest children.
Briscoe, in Alameda County, called the DHCS measurements "an accuraterepresentation of the underperformance of our system."
Are Counties Sitting on Funding?
It's not just the low percentage of children served that's a problem. Mentalhealth advocates said the state should be doing more to collect data onwhether children are being served in a timely manner, and whether thetreatment they get actually leads to improvement.
Patrick Garner, a children's mental health expert and the founder of thegroup Young Minds Advocacy in San Francisco, said the state fails to collectenough data on the quality of the services kids receive.
"There's very little information out there that tells us how well or howgood are the services that are provided," he said. "There's some informationout there that suggests there are systemic problems."
One of those problems appears to be an over-reliance on crisis care, ratherthan longer-term preventative and supportive services. Hospitalizations formental health issues among children ages 5 to 19 have risen steadily since2007, according to Kidsdata.org. Meanwhile, the number ofhours children spent in crisis stabilization increased more than 20 percentbetween 2011 and 2017 under SMHS, state data shows. At the same time, statedata shows that the amount of time dedicated to services that can prevent amental-health crisis-including therapeutic services, in-home behavioralhealth support and case management-has been decreasing. Nevertheless, insome categories of support services, more children overall are getting thistype of longer-term help.
Melinda Bird, senior litigation counsel for Disability Rights California,said waiting until children are in crisis to provide them with mental healthcare is both expensive and ineffective. Counties are required to covernumerous non-crisis SMHS Services, but many haven't built out theinfrastructure needed to provide them, she said.
"The primary way people get services is through hospitalization," she said."That is a traumatic process for children and their parents, and it doesn'tfix the problem."
The access rates also point to racial disparities in who gets served,particularly among Latinos. While Hispanics make up half of all Medi-Calenrollees, the most recent "five visit" rate shows only 3 percent receivedSMHS. That compares to an almost 4 percent rate for white children, eventhough they account for just one in 10 Medi-Cal recipients. Reviewers notedthe disparity in a 2017 external report onSMHS and called on state officials and other stakeholders to take action.The state Health Care Services department did not respond to a request forcomment on this matter.
Health officials, researchers and advocates point to a variety of factorsthat could be stymieing children's access to mental health care, includingfunding challenges, administrative issues and stigma. Some advocates citedthe state's decision in 2011 to reorganize funding for mental healthservices by giving counties a fixed amount of money for SMHS each year.Critics said the move restricted county spending on SMHS even though theprogram is federally mandated to serve all children who need the services,regardless of cost.
SMHS are funded through a combination of federal, state and local funds. Inthe 2016 to 2017 fiscal year, counties spent almost $2 billion on theservices for children, up from about $1.6 billion in 2013 to 2014, accordingto state figures. Approximately half of the funds are reimbursed by thefederal Centers for Medicare and Medicaid Services. The rest comes fromstate distributions to counties of sales tax, vehicle license fee and incometax revenue. Some counties also pitch in their own funds to cover services.
Yet while counties are spending more on SMHS, they're also receiving morestate money to help pay for them. Funding for California's mental healthsystem more than doubled between 2008 and 2017, according to the CaliforniaHealth Care Foundation. That includes mental health funds the state"realigned" to counties in 1991 and 2011, which have risen steadily over thepast five years.
Gardner said the declining access rates don't make sense given the increasein overall funding. He questioned whether counties have funds they are notspending. An auditor's report earlier this year found that counties havefailed to spend $2.5 billion in taxpayer money for mental health caregenerated from Proposition 63, which is used for certain mental healthservices but generally not SMHS. There has been no similar state audit ofSMHS spending. The Health Care Services agency said it does not producedocuments laying out how much SMHS funding counties receive, spend and havein reserves each year.
Thull and Gardner said the state is not doing enough to hold countiesaccountable for low access rates and ensure they provide children withquality services. Fragmentation of mental health services also makes it hardfor families to figure out where and how to get care, they said.
Additionally, a dire shortage of mental health professionals, particularlychild psychiatrists, is making it difficult to meet increasing demand forservices, according to the 2017 external review of the SMHS program.California has fewer than 1,150 child and adolescent psychiatrists toserve more than 9 million children in the state.
'They're Not Alone'
In an email, Health Care Services spokeswoman Carol Sloan said some of thedecline in access rates can be attributed to small, year-to-yearfluctuations in the number of children accessing care in small, ruralcounties. Additionally, new children enrolling in Medi-Cal as a result ofeligibility expansion under the Affordable Care Act and the transition ofthe Healthy Families program into Medi-Cal in 2013 and 2014 are notaccessing Specialty Mental Health Services at the same rate as otherchildren, she wrote.
"Overall, the majority of these counties were still excelling" in terms ofaccess rates, she wrote, noting that several counties have rates that exceedthe state average.
Sloan said the agency is also implementing new federal requirements forcounty mental health plans that it expects will improve access, quality andtimeliness of care. The department has also increased its monitoring ofcounty health plans and is providing them with additional technicalassistance, she wrote.
Kiran Savage-Sangwan, Health Integration Policy Director with the CaliforniaPan-Ethnic Health Network, said she doesn't buy the explanation that newMedi-Cal enrollees need less mental health care.
In fact, some data suggests the opposite, "because they're people whohaven't previously had access to health care necessarily, they're low-incomeand have some of those factors that can be challenging," she said.
Advocates are hopeful two new assessment tools being implemented this monthby the Health Care Services department will begin to provide a clearerpicture of the program's quality. Counties will now be required to measurewhether children's mental health is improving as a result of the servicesthey receive, although it will take some time before this data can beanalyzed.
As for Adela, these days she continues to wrestle with mental illness, buthas received therapy, psychiatry and medication through Medi-Cal to helpstabilize her condition. Now 18 years old, she said she hopes to become anadvocate for other children and young people facing similar struggles.
"Every chance that I get, I try to talk to people and try to tell them mystory and tell them if they're going through something they're not alone,"she said. "When I was younger I didn't know that anyone else was goingthrough anything like this."
Maldonado, Adela's mother, is working to create a support group for parentsof children with mental illness. She works for a non-profit organization inSan Francisco called Support for Families of Children with Disabilities, andsaid she still frequently encounters families with children who appear tohave undiagnosed mental health issues.
"I don't think children need to be at the point of committing suicide to getservices," she said.
This article was produced as a project for the 2017 California Data Fellowship, a program of the USC Annenberg Center for HealthJournalism.