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'It's okay to not be okay': Youth Mental Health Task Force recommends improving supports for providers, crisis management

Baldwinsville Messenger - 3/30/2017

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In the years after they lost their 16-year-old daughter Corey to suicide, Lisa and David Craig did a lot of talking.

At first, it was to each other.

"[We read a book that said] 85 percent of couples who lose a child to suicide end up divorced," Lisa said. "We got closer. But that's because we didn't blame each other. We were both trying to help her."

And then it was to the friends she left behind: the 115 other members of the Bishop Ludden Class of 2008.

"Those kids were devastated," Lisa said.

Later, Lisa would talk to the health classes at Ludden, often to the younger siblings of Corey's friends, about mental health and the dangers of depression. She and David would talk to parents who lost a child to suicide. They talked to strangers on the internet. They talked to people at Hope for Bereaved and the American Foundation for Suicide Prevention's annual Out of Darkness walks.

They talked, because until she was drowning, Corey wouldn't.

"She didn't want to talk to anybody until she realized she was at a breaking point," Lisa said. "The stigma is still there. People need to know that it's okay to talk about it. It's okay to not be okay. It's okay to ask for help."

People, especially children and adolescents, need to know it is okay to ask for help - and the community needs to make sure that help is there when they need it. On March 3, the Youth Mental Health Task Force, headed by 129th District Assemblyman William Magnarelli (D-Syracuse) and 24th District Congressman John Katko (R-Camillus) released its report after two years of research and discussions. The report contained a number of recommendations to strengthen mental health services for youths in Central New York and to help kids like Corey and their families.

Legislators take action

While the task force's report outlines a number of recommendations that can be undertaken at the local level, little movement will take place without legislative support. That's why both Magnarelli and Katko said they'll be advocating for legislation at the state and federal level to allocate funding to mental health programming in Central New York and beyond.

"Both John and I are going to be advocating for more moneys to be made available for mental health and mental illness, especially for our youth," Magnarelli said. According to the task force's report, he plans to introduce legislation that will require private insurers to cover inpatient treatment at state hospitals.

Katko said in 2016, Congress passed the Helping Families in Mental Health Crisis Act, which he said was the largest comprehensive mental health reform bill in half a century.

"Basically, it's just designed to try and help individuals when families are in crisis," he said.

According to the American Psychiatric Association, among other things, the act:

* Creates an Assistant Secretary for Mental Health and Substance Abuse Disorders responsible for improving care for those with mental illness and substance abuse disorders

* Calls for the creation of a nationwide strategy to increase the psychiatric workforce

* Creates the National Mental Health Policy Laboratory to administer several newly created grant programs both for research and intervention services

* Modifications to HIPAA and FERPA to permit certain protected health disclosures in the interest of public safety

* Reforms to Medicare and Medicaid to ensure proper billing for psychiatric care

Katko also noted that the federal government will continue to discuss mental health care this term.

"We are having a major mental health conference in May down here [in Washington]," he said. "We intend to present the results of this [joint task force] report and start discussing with my colleagues in Congress plans to attack the problem."

The report: What does it recommend?

The report from the Youth Mental Health Task Force started in 2015 offered a total of 18 recommendations to address the youth mental health crisis in Central New York. Some were relatively straightforward, like relying on longitudinal studies and routine screening instead of out-of-date data from the National Institute of Health to determine the area's mental health need.

Others, however, are going to involve a lot more work - and money.

"Funding for mental health treatment in general has been an issue," said Dr. Robert Gregory, professor of psychiatry and behavioral sciences at SUNY Upstate Medical University and a member of the task force. "There isn't sufficient funding to meet the demand for services and the need for services."

That said, Gregory said it's imperative that such services are funded.

"What happens if people do not get services that they need and adequate treatment, especially if they lack insurance, is that they'll try to go without treatment and then crash and end up in emergency room, in the hospital or worse, and then be at a more difficult spot actually to treat than if they had been able to come in earlier," he said. "It can be harder after they've ended up losing their job, and maybe lost relationships because of their illness, it's harder to then rebuild and recover. It's not at all impossible, it just takes more treatment effort."

Among the task force's recommendations are a number of efforts to improve access to services, including open access to psychiatric services, incentives to providers to enter pediatric psychology, grants that would improve education for primary providers on mental health, respite services for caregivers and an increased focus on early intervention services and mental health education in schools. Other recommendations include increasing home-based crisis intervention, improving intermediate-level care, improving the transition of patients between providers, creating more community residences and crisis residence programs and providing better access to evidence-based treatment programs.

Another suggestion is increasing access to Assertive Community Treatment (ACT). This model offers flexible, 24/7 treatment and has been proven to reduce hospitalization rates. St. Joseph's Hospital Health Center currently has an ACT program.

Gregory said ACT works best for people who aren't able to organize themselves enough for regular therapy appointments.

"What assertive community treatment does is actually have a team of healthcare professionals go to the person's home or apartment or shelter, wherever that is, and provide treatment there - provide medication, provide brief therapy and case management that would help them where they're at," Gregory said. "That's been shown in numerous studies to help people stay out of the hospital, help them stay well, move on in recovery."

St. Joe's also has a Mobile Crisis Response Team made up of mental health professionals, which the task force hopes others will emulate.

"The mobile crisis outreach does some initial screening for individuals in an emotional crisis, and then if that team of individuals feel that the person needs a full evaluation, they're transported to C-PEP, the regional psychiatric emergency program," Gregory said. "Also they sometimes will provide home visits after a patient visits C-PEP, to insure there's a connection to outpatient care."

Connecting with help

For those in rural areas without easy access to the city's facilities and programs, the report promotes the idea of telepsychiatry, or connecting with a psychiatric professional through the use of video or communication equipment. Gregory said telepsychiatry offers a viable alternative to face-to-face communications in many situations.

"Telepsychiatry actually works very well," he said. "Upstate is one of the statewide leaders in telepsychiatry. We use it to consult, for instance, with pediatricians who are in remote areas. It's used mainly in rural and remote areas where ? there isn't any psychiatrist in the area, and it may be too far to easily travel back and forth there."

Gregory said the hospital offers telepsychiatry for consultation, teaching and treatment, particularly in the North Country, where physicians can be scarce.

"The model works surprisingly well," he said. "We've had a very positive response from the patients who we've served, as well as the providers. I know [the New York State] Office of Mental Health is trying to expand that to some of its sites where it does not have adequate psychiatrists or in particular, child psychiatry is even more difficult to access. So it's expanding its services."

In crisis situations, there's also the 211 system, which the task force recommends be publicized and promoted. The Central New York 211 Center is staffed by multilingual, trained specialists who can help connect callers with mental health and social services; they're also online at 211CNY.com. Teens can also call the Contact crisis hotline at (315) 251-0600.

A legacy for Corey

While crisis intervention is critical, it doesn't address the main question the task force was called upon to answer. With the closure of Four Winds in 2004, it left the Richard H. Hutchings Psychiatric Center as the only inpatient clinic with the capability to care for children and adolescents.

However, the facility does not have a contract with most private insurers, so families are forced to take their children to hospitals as far away as Buffalo or Saratoga for treatment. Last year, some 240 youths went to Upstate University Hospital seeking psychiatric care. Nearly half of them - 111 - had to be sent out of Onondaga County for an inpatient bed.

While quality outpatient care is critical to minimizing the need for inpatient hospitalization, the shortage of inpatient beds can't be overlooked. One of the report's core recommendations is that Central New York needs to add facilities to respond to this need.

Upstate, with some help from Corey Craig's parents, is already working to address this recommendation. In early March, the hospital opened a new psychiatry high-risk program that provides up to a year of treatment for those aged 16 to 40 identified as being at high risk for suicide. The program is funded in part by an endowment named after Corey.

"One of the things mentioned in the task force was that there really are not a lot of specialized treatment programs in the community, including those who are at high risk for suicide," said Gregory, the program's medical director. "In fact, there are very few across the country of programs that are designed to help people who are at high risk for suicide. So we set up this program to meet a community need."

The Craigs said the Corinne M. Craig Memorial Endowment was created shortly after her passing. They chose to take the donations they received to Upstate Golisano Children's Hospital, where they were told they had enough for the hospital to match the funds and create an endowment.

"The purpose of Corey's endowment is for research and education for teens at risk for suicide, and it goes along with what this program is all about," Lisa said.

"There are a number of people, both adults and children and adolescents, who come to emergency rooms, have difficulty accessing treatment outpatient of any kind, actually, because there's a shortage of general medical care. Then particularly, they have trouble accessing the kind of evidence-based treatments that we know to be helpful for this population," Gregory said. "So this program was started to try to meet that community need ? I've also been in communication with major insurers and other people at Upstate are as well, to try and get adequate reimbursement rates that would allow this program to be sustainable."

The Craigs said the program is already having an impact. Shortly after they spoke at a press conference on the opening of the Upstate facility, they got a call from a friend looking for help.

"She had a friend who was in crisis and needed the numbers," David said. "So it had an immediate positive impact."

The first step: Speaking out

While no one recommendation was given precedence over the others, Katko, Magnarelli and Gregory all emphasized the report's final piece of advice: "Reduce stigmatization through education and leadership."

"[We need to] try and get some attention in the public arena," Katko said. "That's the next step, raising awareness and raising the attention level."

Magnarelli echoed those comments.

"Folks, there is nothing to be ashamed of if someone that you know has a mental illness," he said. "These are things that are treatable. You need to get to the proper people, and you need to be taken care of, especially our young people."

Gregory noted that there is an inherent danger in believing the stigma and myth surrounding mental illness, both to the sufferer and to society as a whole.

"There is a basic misunderstanding of what mental illness is, and there are many people who either don't believe it or don't believe that psychiatric care can be helpful. And I've seen many, many cases where because of those beliefs, people end up getting into very big trouble and really deteriorating to a very dangerous point," he said. "It's not only an issue for individuals getting into treatment, it becomes a problem for society as a whole if society isn't willing to put up the money to provide the kind of care, because we don't see the illness as being legitimate, unless it's their own family member, then they start to understand the need for treatment."

The Craigs saw firsthand what happens when society doesn't make mental health care a priority, and they're still learning to live with the consequences.

"You know what the raw fact is? For a parent, the person that you love more than anything in the world kills the person that you love more than anything in the world," David said. "It's just brutal. What are you going to do? You just do the best you can."

The best they can do now is to advocate for kids like Corey and to remind them and their parents, as Lisa said, "It's okay not to be okay."

"It's okay to ask for help," she said. "That's where it starts. That's what's got to change. It needs to be more accepted in their own minds, that it's okay to go and ask for help, it's okay if you're sad. It happens. I would tell kids, 'If you see a friend struggling, don't be afraid to call it out and go to somebody and say, "I worried about this one, because ?'" Don't worry about your friend being mad at you for telling. It's going to be worse if that kid is not there the next day."

 
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