The support group Amber Robinson leads is supposed to run from 6 to 7:30 p.m., but it often lasts hours beyond that.
“Parents are talking,” she said. “They got a lot of stuff to say, to get out. They just want to talk and talk.”
Like the parents in her group, Robinson knows the frustrations of trying to find services for a child with mental health needs in a system that is often overwhelmed and unresponsive. Her 8-year-old son, Dante, has been hospitalized multiple times since he was 4. His intermittent explosive disorder causes tantrums so severe that at times he must be restrained, and since last year, he has lived in a residential treatment center.
But Robinson considers her family fortunate in at least one respect. Because he is covered by the HUSKY health plan, her son is part of the state’s Behavioral Health Partnership, a program that has made significant strides in ensuring that some of the most vulnerable children in the state get the care they need. Some observers say it now provides better access to mental health services than the private sector.
That was not always the case. The partnership began at a time when children were stuck in psychiatric units longer than necessary because there was nowhere to send them. Other children struggled to get any mental health services until they ended up in emergency rooms in crisis. When it began in 2006, there were skeptics about the new model’s ability to meet its goals of improving access to care and getting more young people cared for in less intense–and less costly–settings.
But from the program’s first to second year, the number of children receiving outpatient services increased by 5.5 percent and the number of children admitted to inpatient care dropped. The trends have continued, and the program is now being expanded to include more Medicaid-covered groups, including people with disabilities and low-income adults.
People who have followed the partnership say it is far from perfect, but an improvement over what it replaced and, in some ways, a model for other programs.
“It’s not that it’s all fixed and we can all go home and say everything’s perfect,” said Sharon Langer, a senior policy fellow at Connecticut Voices for Children and a member of the partnership’s oversight council. “But there has been real movement toward unsticking the children, so to speak, and also expanding the availability of community-based services.”
It has worked in part by giving officials enough data to keep close tabs on where efforts are, and aren’t, working, and the ability to intervene. Behavioral health providers get financial incentives to ensure that patients get appointments or that children don’t spend unnecessary time in hospitals. The company that administers the program, ValueOptions, has a portion of its pay withheld unless it meets certain performance targets, and cannot earn more money by denying services.
“The reason that it works so well is because everyone is pulling in the right direction,” said Dr. Andrew Lustbader, a child psychiatrist who led a group of pediatricians and child psychiatrists that recommended, among other things, using the partnership as a model for the private sector.
Making progress has also taken money. About $180 million was budgeted for the program this year, and some, like Jeff Walter, co-chair of the program’s oversight council, worry how it will fare through the upcoming budget process.
Leaders also see the down economy as a challenge as more people rely on the state for help.
“I just think the sheer volume of people that are going to come knocking at the door seeking services in these hard times is going to be a real challenge,” said Karen Andersson, director of the partnership for the Department of Children and Families, which jointly administers it with the Department of Social Services. “Without dollars to jump start start-ups, new programs, existing systems can only take so much on at a time with the existing infrastructure. That’s going to catch up to us very quickly.”
A Surgical Approach
The partnership replaced a fragmented system that was often hard for families to navigate. Some services were paid for by DCF, while DSS covered others. In HUSKY, coverage was divided among multiple managed care companies, and children and families often struggled to get any services covered.
The partnership developed as a way to create one system for children and adults in HUSKY and children involved with DCF.
The effort to improve access to care was helped along by increasing rates paid to providers. But the providers didn’t just get more money; they had to meet certain standards to get it.
For outpatient providers, that included giving people appointments in a reasonable amount of time, offering an appointment within two weeks to 95 percent of the people who sought one, with faster times for more urgent cases.
Early measures showed that meeting the “timely access” standard would be a major improvement for many providers; some were giving timely appointments to as few as 50 percent of new patients. Many hired staff to reach the targets.
While some young people had struggled to get into outpatient services, others were stuck in hospitals because they could not get into the right community-based services.
“They would stay for a very, very long time,” said Mark Schaefer, DSS’ director of medical care administration. “It wasn’t good for the kids, was very expensive for the state.”
To reduce the number of “discharge delays,” the partnership developed a performance incentive program. Hospitals could compete for a pool of money–close to $500,000–that was distributed based on their ability to reduce unnecessary days spent in inpatient care. ValueOptions was given a similar incentive, geared toward making sure that children weren’t being discharged before they were ready.
Each year between 2007 and 2009, patients served by the partnership spent about 10,000 fewer days in inpatient care.
It was possible, in part, because of an expansion of the state’s community-based services, like therapeutic group homes and extended-day treatment, in the early 2000s, which allowed people to receive clinical and therapeutic services without having to live in institutions.
But the drop in time kids spent in hospitals also occurred because program leaders had a better handle on when they remained there longer than was medically necessary, and why.
In the old, fragmented system, it was hard for the departments to measure and track the scope of the problems or what worked in improving them.
The system developed under the partnership was designed to gather significantly better data. The partnership can now track whether children in one area of the state are having trouble accessing a particular type of care, and what interventions could improve things. They can see if one treatment center is keeping kids significantly longer than others, then address it.
“We’re able to take a real surgical approach,” said Lori Szczygiel, CEO of ValueOptions Connecticut. “If we know one provider’s struggling, why have one intervention for every provider when we can just focus the resources that we have for one provider? It allows us to be more thoughtful.”
And being able to see where problems occurred, and having a small number of people or organizations who were accountable, created a sense of urgency, Schaefer said.
“It just sort of made things move much more quickly,” he said. “And while you could argue it should happen anyway, there’s always calls you can put off til the next day. There’s always other kids whose needs and families’ needs you can focus on.”
For the hospitals, reducing the time children spent in inpatient care meant a drop in their income. But again, the data helped. Walter said it put the hospitals “under the microscope,” making them subject to non-financial pressures to improve.
“Everybody wants to look good,” said Walter, who is president and CEO of Rushford, a provider of mental health and addiction treatment for teens and adults. “And when everybody’s looking at something, even if your short-term financial goal is in jeopardy, long-term you’re better off playing ball because nobody wants to feel like, ‘oh gee, everybody’s pointing the finger at me.’ And it works.”
Oversight, Accountability, Support
There are other, less tangible reasons that people who have followed the program say it has worked. Many cite the wide range of groups represented on the oversight council, and the tone set by Walter, Szczygiel and the state department officials. In contrast to the often-contentious medical side of Medicaid, the program’s oversight council has a collegial atmosphere.
“I think there’s an example of what good leadership is all about,” state Child Advocate Jeanne Milstein said. “There’s good leadership, there’s good oversight, there’s clear expectations, there is good support…and there’s accountability.”
For Amber Robinson, the partnership has provided a support system as she tries to find the best care for her son. A peer specialist from the partnership goes with Robinson to meetings, helps her find programs and activities for him, and listens when she needs to talk. Robinson describes her as “another voice” when dealing with her son’s treatment.
“It makes you feel a lot more comfortable when you feel like you have somebody on your side,” she said.
At her peer specialist’s suggestion, Robinson, who lives in Hamden, attended training programs to help her advocate for her son, learning how to make sure his providers are all on the same page, how to better understand his rights in school, and leadership skills. She now tries to spread the knowledge through the support group.
“They’ve made a big impact on me,” she said. “And I’m making through them a big impact on families.”
Robinson would prefer that Dante could live at home, but has come to recognize that it’s not always possible.
“Your job as a parent, and especially if you want the best for your child, is to protect your child, and you want to make sure everybody that’s around them understands that,” she said. “A lot of times, the typical person out there that hasn’t gone through it really doesn’t understand why you may be trying to keep him in the home.”