Are kids feeling better? After youth mental health funding boost, state struggles to say

April 26, 2018 | By Keegan Kyle and Rory Linnane

In hundreds of mailboxes each year, letters from state health authorities arrive at the homes of children with serious emotional disorders like hyperactivity and persistent depression.

The letters ask parents to complete a confidential survey intended to help authorities gauge the value of government-funded mental health services their child has received in the past year.

Is your child better at handling daily life? Is your child getting along better with family members? Is your child doing better in school?

A lot of parents never respond, despite free postage, a mailed reminder and a $2 cash incentive.

But among those who do — typically more than 300 parents annually — the feedback has become as predictable as the letters themselves.

Most kids aren’t doing better.

In every survey from 2006 to 2016, fewer than half of responding parents said their children saw positive results from services, placing Wisconsin in recent years near the bottom of the Midwest and nation in surveys that states complete for federal mental health grants.

The feedback in Wisconsin has been particularly dispiriting from parents of African-American kids. In 2016, just 29 percent said their children were doing better after receiving services, well below the national average of 66 percent.

Some mental health advocates in Wisconsin have pointed to the survey results in recent years amid a push to expand mental health services for children. The surveys are one of the few measures of patient outcomes the state tracks for kids — and they show Wisconsin failing, despite a five-year increase in taxpayer dollars for mental health.

State health authorities who oversee the surveys have urged caution. While the surveys provide a window into the lives of kids with serious emotional disorders, authorities note that thousands of other children who receive temporary and less-intensive mental health care through a patchwork of government and private services are excluded.

This points to a broader issue. For the vast majority of Wisconsin kids, including many who receive health care services through government programs, the state can’t answer the key question: Are kids feeling any better?

More money, little data

Wisconsin lawmakers in 2013 created the Office of Children’s Mental Health, and since then the state has increased funding to youth services in subsequent budgets. However, the lack of data measuring patient outcomes has often shaped policy conversations around further expansions.

“We don’t have a method at this point to measure how well the children are doing and how well the families think the children are doing,” said Elizabeth Hudson, Wisconsin’s director of the Office of Children’s Mental Health.

It’s not only a problem with the public system, Hudson said. Private providers often are reluctant to share their outcome data, making it hard for policymakers to track what works for those families as well.

Lawmakers in Wisconsin approved doubling state dollars for a specific doctor consultation program last year, but rejected funding to expand it statewide. Doctors had praised the program, but state health officials couldn’t say how much it was helping kids.

Similar questions have surrounded steps to open crisis shelters, boost Medicaid payments to mental health providers, and assist schools in expanding clinical services.

Wisconsin authorities collect a bunch of information from mental health providers about bodies and dollars. How many people received services and how much did that cost? But measures of quality are rare.

“Outcome data is something that Wisconsin doesn’t do very well on when it comes to mental health,” said Joanne Juhnke, a policy director for Wisconsin Family Ties. “We could be and we should be doing a much better job.”

Aside from family surveys, Juhnke said the state could be tracking outcomes using more clinical methods, such as asking therapists to assess children before, during and after treatment. She called that approach the mental health gold standard for gauging effectiveness. Some providers already do this, but it’s neither required nor tracked statewide.

State authorities have shown interest in more closely tracking the results of government-funded mental health care. During budget hearings last year, Wisconsin’s top health official suggested linking Medicaid payment rates to patient outcomes. Department of Health Services Secretary Linda Seemeyer called it a “pay-for-performance” system aimed at supporting proven practices.

But months later, the department shelved the idea and raised payment rates for providers across the board. State authorities estimated the boost would cost Wisconsin taxpayers $7 million annually.

Better tracking of patient outcomes is “a constant conversation, to the point that you want to bang your head against the wall,” said Mishelle O’Shasky, chairwoman of the state’s Council on Mental Health, which advises lawmakers and health authorities.

Sticking points

Other states have done better. Hudson envies states like Washington that collect feedback from parents and children throughout the treatment experience to inform statewide policy decisions.

“Washington state has been able to give a lot of really solid information on how kids are doing,” she said. “They’re very systematic in choosing what kinds of therapies they deliver to families.”

In Washington, providers of a major public mental health program regularly assess the needs and strengths of youths in the program. In addition to shaping care for individuals, the measures are combined to track results for providers and regions of the state.

“Having that feedback is what makes sure things are happening the way they need to, and tells us what’s effective,” said Kari Samuel, a research manager with Washington’s behavioral health division. “If you don’t have a picture of what’s working and what’s not, how do you know what to do?”

In addition to assessments, all youth are given the chance to fill out surveys about barriers to treatment. Samuel said the feedback helps measure progress over time and pinpoint issues that need more attention.

For example, Washington officials have learned from recent surveys that transportation is a major barrier to receiving care, and they’re now working to address it.

Samuel said there is occasional resistance from providers who say the data collection is too much work. But she said the information has been crucial to influence programming decisions.

When Wisconsin lawmakers created Hudson’s office five years ago, they charged it with studying the state’s mental health systems and monitoring the performance of programs. Today its method of tracking performance remains limited to suicides, hospital admissions, receipts and other figures that better gauge quantity than quality.

For better or worse, Wisconsin’s mental health systems are local-oriented. While the state pours millions into public services, that money is often split among scores of counties, with local officials deciding how money is spent.

Counties may decide to measure outcomes with their own methods. In Milwaukee County, providers track symptoms of behavioral health problems, school attendance and satisfaction surveys taken by youth and their guardians.

“We’ve been able to take a lot of what we learned and, based on surveys, figure out what families really need and want to help them get to a better place,” said Mary Jo Meyers, acting director of the county Department of Health and Human Services.

Meyers said she wishes the county and state had a better understanding of how factors such as poverty, racism and lack of primary care access play into mental health challenges. County officials are considering ways to measure adverse childhood experiences, and how people are coping with those experiences.

New measures

In one state-funded program called Comprehensive Community Services, or CCS, Hudson said she hopes state health authorities have found a doorway to better patient outcome measures.

CCS is a community-based program for children and adults who have been diagnosed with emotional disorders that interfere with everyday life and who need ongoing help.

In 2013, Wisconsin lawmakers approved $10 million in additional state dollars for CCS in an effort to expand access. The program is now available in most counties. Nearly 2,500 youth received services last year, state figures show.

As part of the program, state health officials are requiring counties to survey families who receive CCS. The survey is modeled after the same one historically sent to homes of children with serious emotional disorders.

With the CCS surveys, however, parents are asked to respond for children under age 13 and older youth are asked to respond for themselves. As in Washington, authorities here hope that teen input may better gauge if services are making inroads.

State health officials began requiring the new surveys in 2014 as a condition of receiving state dollars.

Early results from the CCS surveys show more positive results than Wisconsin’s longtime surveys of children with serious emotional disorders, according to state figures.

Hudson called the poor feedback for children with serious emotional disorders disappointing but also predicted lawmakers’ latest boost for services might finally spur change.

“It’s going to take a little while for the investments to show up in the data, but I would expect to see an uptick in two years,” she said.

Juhnke said she was also hopeful but cautioned that past expansions haven’t resulted in clearly better outcomes.

“There are only so many ways that you can slice and dice it to explain it,” she said. “At the end of the day, something is wrong and we haven’t quite figured it out.”

Join our call for action on youth mental health

We invite you to join us May 10 in Madison to renew the pledge to put Kids in Crisis first and help end teen suicide. We’ll hear stories about youth mental health challenges, resilience and hope. And we will discuss how we all can help improve the mental health of children and families across Wisconsin.

What: Kids in Crisis Day of Action in Madison
When: 10 a.m. to 11:30 a.m. May 10
Where: Overture Center for the Arts, 201 State St., Madison

The event is free and open to the public.

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