Waiting Lists Balloon

Years after mental health overhaul, new picture of needs emerging
Waiting lists have ballooned.

By Andrea Ball
AMERICAN-STATESMAN STAFF
Sunday, December 06, 2009

Six years ago, Texas leaders knew the state mental health system was in bad shape.

They knew it couldn't help everyone; that patients got few services; that community mental health centers didn't consistently measure how well programs worked; that care varied from center to center.

They knew it was bad. But they couldn't tell exactly what was happening at the 39 state-funded community mental health centers, which serve indigent, low-income or uninsured people.

Now they know.

In 2003, in an effort to improve the state's mental health system amid a budget shortfall, Texas legislators transformed the public mental health system. First, they rationed state-provided services, focusing on people with schizophrenia, bipolar disorder and major depression. People with other illnesses, such as anxiety and post-traumatic stress disorder, rarely received help unless they went into crisis and threatened to harm themselves or others.

Officials say new requirements for data collection and patient tracking that were part of the change have given them the clearest picture yet of the state's mental health needs — and how well Texas is meeting them.

According to the Department of State Health Services, that picture shows:

Waiting lists for services, which were not widespread in 2003, are now filled with thousands of people who sometimes wait more than a year to get medication, therapy, substance abuse care and other services from community centers. More than 6,800 adults and children with schizophrenia, bipolar disorder and major depression are on waiting lists. Of those, 4,550 are receiving no services; the remainder are in the system but waiting for additional care.

Because of the 2003 changes, centers routinely deny care to people who don't have schizophrenia, major depression or bipolar disorder.In 2003, the Texas system served about 14,800 people with primary diagnoses such as panic disorder, borderline personality disorder or anxiety, whom centers rarely accept as patients. Today, the centers serve about 3,900 with such diagnoses. People who are no longer accepted have to get help from other agencies, such as nonprofit or private providers.

Patients who are ready to transition out of the state system often have nowhere else to get help. At Austin Travis County Integral Care — the local public mental health center — more than 500 could be getting care elsewhere, but officials say there are not enough nonprofit and private providers willing or able to help them.

People who are getting care are getting better. According to Department of State Health Services statistics, 82 percent of adults who received mental health services in fiscal year 2008 improved or stabilized. Many got housing, found jobs or were arrested less often.

Having that kind of information is critical when asking politicians for more money, said Mike Maples, assistant commissioner for the department's Mental Health and Substance Abuse Division. It has also helped the state see what additional services people need, such as trauma therapy, supportive housing and job assistance.

"Just knowing is golden," he said. "Before, we didn't know anything."

But whether the changes in the statewide system — which standardized the quantity and types of services people receive at the 39 mental health centers — have improved the quality of care is still unclear because the centers never tracked data the way they do now, said Jim Van Norman, medical director at Austin Travis County Integral Care.

"We're five years out, and we still don't know if the system is better than it was before," Van Norman said.

More state funding

Advocates for people with mental illness say the need for reform stemmed from Texas' long history of underfunding psychiatric services.

In fiscal year 2006, Texas ranked 50th in the country in per capita mental health spending at $34.57, according to a 2009 report by the Henry J. Kaiser Family Foundation, which ranked the 50 states and the District of Columbia. The only state below Texas is New Mexico, which spends $25.58. The national average is $103.53.

The limited funds have forced centers to limit the number of people it can serve.

There are more than 453,000 adults in Texas with serious and persistent mental illnesses, according to the Department of State Health Services. Not all seek care at the state-funded centers. Last year, the centers served more than 115,000.

The new rules, implemented in 2004, required centers to provide a minimum number of hours of state-approved services to each patient. It forced them to routinely reassess patients, carefully track services provided and report such information to the Department of State Health Services.

"We hoped that it would be a triage tool, that it would ensure the most limited resources were used on the most seriously ill," said Joe Lovelace, former executive director of the National Alliance on Mental Illness Texas, which advocated for the changes.

Since then, the state has ramped up spending on mental health care. This year, legislators allocated $55 million to expand services at local mental health centers. That money will fund additional services, such as psychiatric follow-up, case management, housing assistance, peer-support programs, at-home life skills training, physician visits and medication.

This fiscal year, community mental health centers will receive $341.8 million from the state. That does not include the $55 million.

The money is the second shot of cash to the system in recent years. In 2007, legislators approved $82 million to the centers for additional crisis services, which is immediate care for people who are suicidal or potentially violent. The money paid for things such as mobile outreach units, crisis hotline improvements and pay for specially trained mental health law enforcement officers.

The new money has allowed more people to get help, Maples said.

Between September 2006 and August 2007, 8,890 people received care through Psychiatric Emergency Services, the crisis center run by Austin Travis County Integral Care. Between September 2008 and August 2009 — after the center had received $4.6 million in crisis funding — the center served 10,707 people.

Statewide, the number of people being served by community mental health centers increased from 111,000 in 2007 to almost 116,000 in 2009, a jump Maples attributes partly to the new crisis services.

"When you expand crisis services, you're all but advertising them to come," he said.

Robert Wittmer credits that kind of care with keeping him alive.

Wittmer, who is 41 and suffers from major depression, was living in his car, hotels and homeless shelters when he connected with Integral Care in 2007. The center gave him medication, supportive housing, substance abuse services, counseling and other services, he said.

He still struggles, he said. He's been suicidal and spent time at a local psychiatric hospital. But he says the local mental health center gives him whatever he needs to stabilize.

"For me, it's been great," Wittmer said.

Waiting lists grow

But thousands of others are still waiting.

Integral Care's waiting list hovers between 800 and 900 people and takes about 13 months for patients to reach the front of the line. The Bluebonnet Trails Mental Health and Mental Retardation Center in Williamson County has a 100-adult list that takes six to eight months to get services. The Mental Health and Mental Retardation Center Authority of Harris County has a list of more than 600 people. Though the average patient there waits about three months for service, some have waited up to a year.

Requiring the centers to create formal waiting lists "finally (put) a spotlight on the scope of the need," Van Norman said. "We've got a better sense of services offered and where the gaps were."

But it's hard to move people out of the system — and off the waiting lists and into services — because of the shortage of mental health care for the indigent in communities throughout Texas, he said. Few psychiatrists take Medicaid, and many primary care doctors refuse to prescribe psychiatric medications because mental health is not their specialty. In Travis County, the CommUnityCare clinics, which provide medical care to low-income people and are funded by the Travis County Healthcare District, are overwhelmed. That puts more pressure on the state mental health centers, which often serve more people than the state is paying them to help.

Integral Care, for example, is paid by the state to serve about 3,000 adults, Van Norman said. They are serving 4,800, which they accomplish by increasing staffers' caseloads.

"It's not a good situation, because then things fall through the cracks," Van Norman said.

Advocates say serving so many people has not only made it difficult for patients to get into the system, it's also easier to get kicked out.

"If you miss an appointment, you get dropped right away," said Shannon Carr, executive director of the Austin Area Mental Health Consumers, which provides classes, support groups and other services for people with psychiatric illnesses.

Carr says she knows of multiple cases in which this has happened.

But it shouldn't, Van Norman said. When someone has missed an appointment, center staffers are supposed to try to contact the patient several times to reschedule, he said.

However, he said he knows staffers don't always do that because they are overwhelmed with other duties. The center recently stepped up efforts to ensure staffers make a "good faith effort," to contact patients, he said.

Patients say it can be difficult to reschedule.

Jodi Tidwell, a 38-year-old Wimberley woman with bipolar disorder, receives services though the Hill Country Community Mental Health Mental Retardation Center. In April, Tidwell, a part-time communications assistant who does not have insurance, missed an appointment because her daughter was in the hospital. Tidwell says she tried to reschedule in June, but employees were sick, appointments were cancelled and it was finally determined that the psychiatrist could not see her until January.

In early September, Tidwell ran out of medicine. She says she bought Cymbalta from a friend. She used Lamictal a family member no longer needed. She rationed her drugs.

By late November, Tidwell said, she was depressed and teary. Two days before Thanksgiving, Tidwell said, center staffers gave her a prescription for one of her medications. They also moved up her appointment to December.

"The individual doctors, nurses and coordinators care, but policies keep them from being able to treat us as patients," Tidwell said. "They see us as binders full of perfectly filled-out records."

Linda Werlein, chief executive officer for the center, which is in Kerrville, said privacy laws prohibited her from discussing Tidwell's case. But in general, she said, "if someone consistently does not come to the clinic and make appointments" then they have to wait to see a doctor before they get their prescriptions.

People who are in crisis can be served quickly during emergencies, she said.

Filling in the gaps

But many will never get into the public mental health system at all. Thousands have been transitioned out of services because they did not meet the new diagnosis criteria.

So where did they go? Some were likely recategorized so they fit into services at the centers, Van Norman said. Others have gone to the public health clinics or local nonprofits.

After the new system began, other community organizations started putting more money into mental health services to help fill the gaps.

The Travis County Healthcare District now funds 18 psychiatric hospital beds, which serve about 1,000 people a year. Since 2006, the St. David's Community Health Foundation has given more than $7 million to nonprofits that provide mental health services.

"This is part of who we are in the community and we need to start addressing the unmet need," said Bobbie Barker, the foundation's vice president for grants and community programs.

Some end up in the criminal justice system.

Eric Willard, a board member with the National Alliance on Mental Illness Texas, is also chief of the mental health unit for the El Paso County public defender's office. Of the 500 new clients he sees each year, about half have disorders that would likely make them ineligible for services, he said.

"I think it's a travesty," he said. "I think the state of Texas needs to be horsewhipped for what it's done to the mentally ill."

State Rep. John Davis, R-Houston, who has lobbied for more mental health money, said he hopes legislators will continue to increase funding.

"Sometimes it's a hard sell, but you just keep with it because it's important," he said. "These are the most vulnerable people."

Prevention, Finding Support A Struggle In East Texas

From the Tyler Morning Telegraph:

By KENNETH DEAN
Staff Writer

After her 18-year-old son Jared's suicide, Carol Johnson said she felt helpless and even had thoughts of taking her own life.

But, with the help of a group called Compassionate Friends and networking with others who have suffered a loss of a loved one by their own hand, the Lindale native was able to regain control of her life and move forward.
Ms. Johnson is now armed with experience and ready to help others with her newly founded group, Touched by Suicide.

But Ms. Johnson said those contemplating suicide need more help in East Texas, and prevention and signs should be taught in local schools to help battle the problem with school-age children and to teach them early that help is available.

“Suicide is part of an illness. You don't just wake up one day and say, ‘I'm going to kill myself.' There needs to be more education on this subject, because every 16 minutes in this country alone someone takes their life,” she said.


COMFORT AND HOPE
Joy Biggs said she too struggled with every day life after her son Josh Dunlap took his life in 2004.

As she reached out for help, she quickly learned there were no groups in the area for those left behind by suicide.

Ms. Biggs said she researched and learned there was a Suicide Survival Therapy course in Dallas, so for eight weeks, she traveled back and forth to attend the classes.

“It was very helpful and taught me how to deal with some of the feelings I had. Josh was my son and I just felt like at times I had failed him in some ways. There was a lot of guilt,” she said.

According to the American Foundation for Suicide Prevention, the feelings for those left behind after a family member commits suicide include shock, symptoms of depression, anger, relief (because it may have ended a long and difficult mental illness) and guilt.

Ms. Biggs, Ms. Johnson and David Terrell, who lost his son Andy to suicide in 2003, all said the help and support from others going through the same thing is what pulled them through the difficult times.

“There is no map on this path to becoming whole after the loss of a loved one to suicide. It is the most painful of journeys — full of twists and turns, bruised hearts and misunderstandings. Small wonders appear on this path, but we may be too sore or fragile to recognize them. But there will be a day when you can look back and know that they were there,” the AFSP Survivor Council states in a brochure.
In Dallas organizers have put together conferences and “Out of the Darkness Walks” to bring survivors together and to gain attention for their cause.

Ms. Johnson said while her group is relatively new, it already is helping those who are participating, and she hopes to grow the group so that more families can begin the healing process.

“I know someone that had not talked about the suicide in their family for 20 years. That is a long time to hold something in, and now they are talking about it and it is helping,” she said.


EDUCATION AND PREVENTION
The main resources for those contemplating suicide in the Tyler area are the Andrews Center and the East Texas Medical Center's Behavioral Health Center, but there is no area crisis line where one can talk immediately to a trained counselor.

Lacy Canion, ETMC Behavioral Health Center operations manager, said the reason is because of the possibility for liability.

Ms. Canion said she lost an immediate family member to suicide after she began her career in helping others, and she knows the pain of wondering why a family member would take his or her life.

Ms. Canion agreed with Ms. Johnson and Ms. Biggs, saying more could be done, but added her facility has trained counselors and psychiatric professionals to work with those with thoughts of suicide.

Ms. Johnson said, however, that everyday people need to be educated about the signs of someone thinking about suicide because often times the hospitals will release a person after a few days, and then they are thrust back into reality with all of the same problems.

The hospital “had Jared for four days, and then they sent him home with no instructions as to what I should do or look for,” she said.
Terrell said prevention begins with discussion and Ms. Biggs said schools need to get on board and start programs for children.

“There needs to be more discussion about this because it is very real and it affects a lot of people,” Terrell said. “The people who commit suicide truly believe there is no other way. The more we can talk about it, then the chances of preventing it increases,” Terrell said.


SIGNS AND WARNINGS
Professionals say there are clear warning signs when it comes to someone thinking about suicide and knowing the signs can save a life.

According to the AFSP, the imminent dangers include threatening to hurt or harm self, looking for ways to kill self, talking or writing about death, dying or suicide, or has made plans for a serious attempt. Someone who starts giving all of their possessions away also may be contemplating suicide.
Other indicators may include insomnia, intense anxiety or panic attacks, a feeling of being trapped or hopeless, full of rage and anger or feeling as if there is no reason to live.

Between 50 and 75 percent of all suicides had warning signs, and the person had give some warning of their intentions to a friend or family member.
Professionals say if you notice the signs in a loved one, then talk to them and if needed seek help immediately.

Ms. Biggs said her son had two failed suicide attempts before he took his life, but she said he did display the warning signs.

However, she added he knew how to say just the right things and was even released from hospitals because he convinced the professionals he was OK.
Ms. Johnson said she is optimistic because the topic of suicide is finally garnering the attention of the U.S. military and she hopes studies the government is doing will give new insights about the problem.

“We need more prevention and just talking about it is a prevention tool. By not talking about it we are just ostracizing people,” she said.
Ms. Johnson’s group meets the second Tuesday of every month at the East Texas Center for Independent Living, 4713 Troup Highway. Ms. Johnson said anyone who wants to attend can call her at 903-574-3127.

Families Who Lost Loved Ones To Suicide Open Up About Effects, Need For Awareness

By KENNETH DEAN
Staff Writer
LINK to Tyler Morning Telegraph
Emotions rack the mind with numbing pain, mixed with feelings of disbelief and seething anger, as friends and family struggle to find words to comfort those left behind when a loved one commits suicide.

Society has placed a stigma on suicide, which not only condemns the person who has committed suicide, but in many cases, sees people abandon their friends and family because they fear the unmentionable act might spread to their own family.

"Talking about suicide is like saying 'sex' and 'pregnant' in the 1940s and 50s. Everyone is afraid it will spread and it's not sociably acceptable to talk about," David Terrell said.

If you are experiencing thoughts of suicide and wish to talk to someone, call 1-800-273-TALK (8255) to be connected to a suicide prevention and crisis center in your area.

A suicide and crisis number for the Dallas area is 1-866-672-5100.

For more information about the American Foundation for Suicide Prevention visit the organization's Web site at www.afsp.org.

Touched by Suicide, contact Carol Johnson at 903-574-3127.

Terrell and several others agreed to sit down with the Tyler Courier-Times--Telegraph recently and speak candidly about the effects suicide has had on themselves and their families.

One main point the group wanted to punctuate is that any family can be touched by suicide. Statistics now show every 16 minutes, someone commits suicide in America.


THE ANGER
Those gathered talked about a wide variety of emotions they have dealt with over the years, but they all agreed anger surfaced more than the rest.

"The worst thing is there is no one to blame. You have all of this anger but no one to really be angry at because that person is the person you loved. If someone walked up and shot my son dead, then I could be angry at them. But I loved my son, so how can I be angry at him?" Terrell said as tears filled his eyes.

Terrell's son, John Andrew "Andy" Terrell, was 31 when he took his life by hanging himself at Pier 1 Imports in Tyler on Nov. 25, 2003 after struggling with marriage and financial problems.

Terrell said he talked to his son the night before he died and the conversation was of pending plans for Thanksgiving, with no indication anything was wrong.

"He told me, 'I'll see you this weekend,' and the next morning I was called and told he had hung himself," he said.

Joy Biggs said she was mad at the doctors involved in her son Josh Dunlap's care because instead of giving him psychiatric counseling for his Obsessive Compulsive Disorder, they prescribed a variety of medicines.

Josh Biggs, who had just completed his master's degree in landscape architecture, took his life in a motel room on May 24, 2004, after at least two attempts at the age of 32.

His mother said her son was tormented with his illness for years and suffered greatly from long-term insomnia, which only served to intensify his mental illness.

"He was just worn out with his battle with OCD. He was so ashamed of the illness that his closest and dearest friends didn't even know he had a problem," she said.

Biggs said psychiatry has moved too far into medicating the patients and away from psychotherapy with one-on-one treatment.

"You do have a lot of anger and it has to go somewhere," she said.


A DIRTY WORD
The word "suicide" is met with thoughts of weakness, one's inability to cope with society and a litany of other stigmas, but the loved ones left behind say it can happen to any family.

"It's not a weak person who commits suicide. It's a person with an illness. You don't just wake up and decide you're going to kill yourself," Carol Johnson said.

Johnson's 18-year-old son, Jared, shot and killed himself in a bathroom inside her home in Lindale on Sept. 27, 2005.

"He borrowed a gun from his grandmother to go "target shooting," hugged her, then went home, locked himself in the bathroom and shot himself," she said.

Johnson said her son had been treated for having thoughts of suicide, but had a lot of love and support and had been doing well up until his death.

"Suicide many times leaves loved ones being ostracized. I had people I knew that when I saw them in the grocery store after Jared's death they would walk the other way," she said.

Biggs agreed and added her thoughts on people and their beliefs about suicide.

"The ideas which are still circulating around in our society about suicide are archaic," she said. "We need some discussion about this because only that will get this out in the open."

With a raised quivering voice, Terrell said he had people tell him his son was in Purgatory because he took his own life.

"That is not something a parent wants to hear about their child and it is something that should not be said," he said as tears filled his eyes.

But, dealing with others and losing friends because a suicide has struck a family is only half of the effects -- the other is coping with the aftermath.


STRAINED RELATIONSHIPS
At her special place in the Tyler Children's Park, Biggs remembers her son, Josh, and exhales to catch her breath.

Biggs explained Josh had been a part of the early planning of the park and he told her one day she would need a special place all to herself.

"I go there to think and be close to him. It is my special place," she said. "This was my son and I loved him and I just want to be close to him."

Terrell said his son's death changed his family forever and left it shattered.

"My (former) wife has a different husband and I have a different wife. Suicide changes everything and nothing is the same from the day it happens," he said. "I am not the same before Andy's death and neither is my wife."

Biggs and Terrell agreed, saying they lost friendships and relationships within the family unit are strained to breaking points.

"Suicide leaves a fractured family. My daughter said our family was like Humpty Dumpty. We've been put back together, but the cracks are still there and they run deep," Biggs said.

As a family struggles to find itself after suicide, there are many issues to deal with to attempt to move forward.

Johnson said for her, the main obstacle to overcome surrounding her son's death was the guilt.

"As a mom, the guilt was horrible at first. I loved Jared and still love him, but I am finally free of the guilt. After a lot of time and talking to others, I finally know I didn't do anything wrong," she said.

Monday: The series continues with a look at prevention and services for families struck by suicide.