LEARNING TO SPEAK UP

By Robin Williams Adams
The Ledger

 Write an email to Robin Williams Adams

Robin Williams Adams
Health/Medical Reporter
Dept.: Metro Desk
(863) 802-7558
robin.adams@theledger.com

Your Name: 

Your Email: 

Subject: 

Message: 

 

LAKELAND | Some regular attendees of the Jeanene Brown Drop-In Center still ask for permission to use the bathroom.

That may seem strange to anyone who hasn't dealt with severe mental illness, but Chip Jones has and he understands.

"People with mental illness are told how to act, how to think, how to behave," said Jones, a facilitator at the Lakeland center that provides emotional support for people battling with illnesses such as bipolar disorder, schizophrenia or depression. "They lose their belief, their power, their feeling that they have a right to speak out about things."

Increasingly, local mental health programs want to end the silence. They are encouraging people receiving treatment to speak up, identify their goals and actively help plan their treatment rather than have counselors decide for them.

This major change is part of a national movement to transform the mental health system, in keeping with "Achieving the Promise," a report released four years ago by the President's New Freedom Commission on Mental Health.

learned helplessness

The commission called on the mental health system to reverse the learned helplessness that Jones describes.

State officials, through the Department of Children and Families, are pushing Polk County's mental health agencies to do just that.

If they succeed, it would be one of the most significant shifts since patients were taken from state hospitals and thrust into underfunded, community-based care in the 1970s and 1980s.

If they fail, the transformation movement could become yet another underfunded dream, similar to what many in mental health say occurred with the closing of psychiatric hospitals like the former G. Pierce Wood in Arcadia.

For two years, The Ledger has examined the challenges facing Polk County residents with mental illnesses and the failures and successes of the local and state mental health system.

Unmet needs were an ongoing problem well before the "Matters of the Mind" series began. The concerns were voiced by workers for the agencies that provide treatment and the relatives of people who receive it.

Increasingly, people with severe mental illnesses are asking how they can work for changes. They want their lives to be more than struggling to live on disability checks.

The hopes for change are undermined in Florida by legislators' unwillingness to increase funding for community-based mental health programs despite the state's ranking near the bottom in per-capita spending on the mentally ill.

Funding for community mental-health services has stayed basically flat in recent years, even before the housing market became rocky and the state's tax revenue fell along with it.

Limited funding shows up in a lack of affordable housing for the mentally ill, too little help in finding jobs and transportation woes.

Relatives of children who have mental illnesses beg for respite care to give them and their families some relief. They also say Polk County needs residential programs, beyond a crisis unit and hospital beds, for the most severely mentally ill children.

Polk's two Florida Assertive Community Treatment teams, part of a national effort hailed as model community care for the most severely ill, haven't gotten a funding increase in years.

funding cuts likely

People with mental illnesses still report waiting weeks to see a psychiatrist if they're new to the Polk system.

The local chapters of Partners in Crisis and the National Alliance on Mental Illness, advocacy groups for improved mental health treatment, said they've been warned to expect cuts, not increases, in state funding when the Florida Legislature convenes this year.

While local legislators said they're sympathetic to the needs of the mentally ill, they won't make any guarantees about finding more money.

"Community mental health funding has indeed been flat and, unfortunately, I am not optimistic about additional funding in this very challenging budget year," said state Sen. Paula Dockery, a Lakeland Republican.

If more money does become available, according to Dockery and state Rep. Dennis Ross, R-Lakeland, it's likely to stem from a recent report to the Florida Supreme Court on how lack of funding for community programs results in people with mental illnesses being jailed inappropriately.

Ross said that report could prompt lawmakers to be more sympathetic to the needs of local centers.

During his eight years in the Florida House of Representatives, Ross said, he's seen greater awareness that the needs of people with severe mental illnesses are as significant as those of people with physical injuries.

So far, however, that hasn't translated into many new initiatives, such as policies requiring insurance plans to cover mental illnesses on the same level as physical ones.

rattling the cage

To make that change and others, "it will take a lot of cage rattling by a lot more people than are doing it," Jones said.

He's speaking both as a 15-year Peace River Center employee and as someone who has diagnoses of anxiety disorder, depression and obsessive compulsive disorder. Jones considers himself one of the lucky ones. He has a steady job, is married and has a young son.

At the Drop-In Center, he helps mental health consumers such as Adam O'Connor and Paul Reed organize seminars on empowerment and political activism.

O'Connor and Carolyn Palmer are the local Department of Children and Families transformation specialists, who work closely with Partners in Crisis.

They surveyed people with mental illnesses who are in state-funded medical and assistance programs to identify their most common needs, many of which they know firsthand.

O'Connor has been diagnosed with mental disorders. Palmer raises a grandchild who has one.

For those who have illnesses such as schizophrenia or bipolar disorder, successful recovery means keeping voices in their heads under control, avoiding crises, keeping their moods stable and seeking medical help when they need it.

Reed, who lives in Lakeland, deals with those issues daily. His struggle with schizoaffective disorder was featured as The Ledger began this series. He remains a client of a Florida Assertive Community Treatment team that provides around-the-clock access for its patients. He continues writing and educating others with mental illness on how to lobby legislators.

fewer get assistance

Although the number of people thought to have severe and persistent mental illnesses in Polk, Highlands and Hardee counties goes up each year as the overall population increases, fewer received mental health assistance through the Department of Children and Families or Medicaid in 2006-07 than in the previous fiscal year.

DCF puts the number of people with severe, persistent mental illnesses in the three counties at 11,731 adults and 12,206 children.

Not everyone with mental illness needs state-funded care.

Some have insurance.

Others won't admit they have an illness.

But it has become apparent that many of those who do need state-funded care aren't getting it.

Of those adults judged most in need, 7,880 received services funded through DCF or Medicaid in 2006-07, according to Neal Dwyer, who directs DCF's mental health and substance abuse unit for Polk, Highlands and Hardee. Another 1,351 received other types of services, such as crisis intervention.

many more need help

That comes to a total of 9,231 adults, fewer than the 10,664 adults who received treatment through the state in 2005.

Only 5,377 children received services through DCF or Medicaid, fewer than half of the 12,206 believed to need mental health care.

What extra funding lawmakers have provided statewide has come predominantly in a surge of dollars to add more state evaluation beds, a response to a judicial backlash in late 2006.

Judges were threatening to fine or jail DCF officials because mentally ill people were kept for months in county jails as they waited for state evaluations of their competency. Prisoners who should have been transferred to state hospitals within 15 days, and had their paperwork to be transferred, remained in jails for weeks or months because the state provided too few state evaluation options.

That problem has been relieved, according to Dwyer and the local Public Defender's Office.

But it came at a high price for community-based programs, which saw their likelihood of significant funding increases vanish.

Although funding has stayed fairly flat, demand for services has grown through the years.

sheriff kept busy

"It's not unusual to run four, five, six Baker Act calls (for involuntarily committing people with mental illness) in a night," said Polk County sheriff's Lt. Brian Garrett, who led an effort to provide mental health training here for some law enforcement officers.

"Our mental health calls have risen about 2,000 calls a year over the past four or five years," Garrett said.

A few years ago, 10 new arrivals a day was considered a high number for Peace River Center's crisis stabilization unit.

In 2006-07, the unit averaged 20 a day.

The Polk Sheriff's Office is part of the local Partners in Crisis, which is active in lobbying the Legislature. Its members include representatives from the judicial system, agencies that provide mental or substance abuse treatment and relatives of people with mental illness, although it often has difficulty getting regular attendance from people who have severe mental illnesses.

Garrett is an example of the increasing ability of local groups to work together. He is the president of the Polk chapter of the National Alliance on Mental Illness, whose members include people with mental illnesses and their relatives.

NAMI is a member of Partners in Crisis.

Partners in Crisis members swing between optimism that state officials appear more committed to true improvements in mental health and substance abuse treatment, which often occur hand in hand, and pessimism that state funding won't improve this year.

"Not only do they not give us more money, they cut us more," said Carl Reed, Paul Reed's father and a longtime member of the National Alliance on Mental Illness.

Still, mental health advocates are excited about the emerging emphasis on recovery, which the President's New Freedom Commission on Mental Health defines as the process in which people are able to live, work, learn and participate fully in their communities.

That means finding ways for people with severe mental illnesses to function at their highest possible level. For some, like O'Connor, that can mean working and living in the community with minimal assistance. For others, it means stability and reduced symptoms.

wellness tools

"It's not like I'm considered cured," said O'Connor, who is diagnosed with depression and general anxiety and bipolar disorders.

"I have my (bad) days now and then. But then I remember all the wellness tools I've learned," O'Connor said.

Agencies providing care are listening more to their clients, O'Connor said, but he agrees with Reed and Jones that the process of making legislators aware of the needs will take time.

Polk County has too few housing and transportation options, he said, but there's little, other than lobbying, that local mental health clients can do to change that.

His most active client-based group is trying to dispel misconceptions about mental illness, in the hope that will lead to improved housing and job opportunities.

"We're a voice that's been ignored for so long," O'Connor said.

"We're not going to be silent anymore."



[ Robin Williams Adams can be reached at robin.adams@theledger.com or 863-802-7558. Read her blog at robinsrx.theledger.com ]