Catalyst Spring/Summer 2005

We hope that this special issue can help – it includes a feature article on preparing for crisis and fighting for treatment, with some checklists and instructions on pulling together a CARE kit in case you ever need it; information on a new study showing that assisted outpatient treatment (AOT) reduces caregiver strain, and voices from families in New York, a state with an AOT law, and New Jersey, a state that is fighting for one. You’ll find some hard data on New York’s successes with AOT as well as a roundup on news from other states. There is a detailed legal article on navigating the HIPPA privacy law, which many people ask us about. And finally, TAC announces the winners of its annual Torrey Advocacy Commendation, including two family members who courageously turned personal losses into public advocacy.

Feel free to print out a PDF copy of this newsletter for easier reading or to share at a conference or event. (Read more on our permissions policy.)

This issue of Catalyst focuses on the families and friends who support loved ones with severe mental illnesses. Over the last year, the critical public role that families can play in improving treatment has been quite visible.

Two Michigan state senators, who know severe mental illnesses firsthand through their brothers’ experiences, forged a successful bipartisan campaign to improve their state’s AOT law. A state senator in Maine, spurred by his family’s experiences, has launched a long-term effort to improve that state’s archaic treatment law. And Acting New Jersey Governor Richard Codey, whose wife courageously publicized her struggle with mental illness, made reform of the mental health system a cornerstone of his administration. “There are some who have said that mental health is my personal agenda,” he said in part. “But this isn’t my agenda, it’s everyone’s agenda ... Individuals with mental illness are our brothers and our sisters ... our mothers and our fathers. They are our sons and daughters ... our neighbors and colleagues. And, yes, our husbands and our wives. And they all deserve better.”

It is no coincidence that legislators with personal experience recognize the necessity of a measure scientifically proven to both reduce caregiver stress and help those who deserve better - assisted outpatient treatment.

In that same state-of-the-state address in January 2005, Gov. Codey also recognized the critical private role that so many families take on, noting “50 percent of adults with severe mental illness live at home with their aging parents.”

Although we all recognize that providing support for a loved one brings many rewards, caregiving responsibilities also generate significant stress. A myriad of studies document the effects of caregiving for adults with severe mental illnesses. Each day at the Treatment Advocacy Center, families contact us with heartbreaking stories about the stress of coping with a loved one who is refusing treatment. Aging parents find themselves still struggling to provide a psychotic adult child with even the basic necessities.

One recently published study provides a ray of hope for families. As part of the largest randomized control study of assisted outpatient treatment (AOT), known as the Duke study, researchers measured the effect of AOT on caregiver strain. 1

The study involved caregivers of individuals with severe mental illnesses who were awaiting discharge from involuntary hospitalization and met these criteria for AOT: lack of capacity to survive in the community with available supports, a clinical history indicating a need for treatment to prevent deterioration that would predictably result in dangerousness, and an inability to make informed decisions to seek or comply voluntarily with recommended treatment. A caregiver was defined as a family or nonfamily member primarily responsible for providing care (assistance with daily living, transportation, treatment management, housing, emotional support).

The level of strain was measured over a year for caregivers of individuals who had sustained AOT (at least 180 days) compared with those who had brief periods of AOT or no AOT. The study results indicate that extended outpatient commitment over the course of a year significantly reduces caregiver strain.

Not surprisingly, improved treatment adherence also reduced caregiver strain. However, the study showed that AOT operates as an independent factor from treatment adherence in reducing stress. That is, the researchers concluded that “extended outpatient commitment contributes significantly to reduced caregiver strain, over and above its effect on treatment adherence.”

Family and friends are an important resource in providing care and support for individuals with severe mental illnesses. As a matter of public policy, it is imperative that families receive the support that they need. Assisted outpatient treatment is an evidence-based means of reducing caregiver strain. But it is also a proven means of improving consumer outcomes and quality of life.

1 April Groff, et al., August 2004, “Caregiving for Persons With Mental Illness: The Impact of Outpatient Commitment on Caregiving Strain,” 192 No. 8 Journal of Nervous & Mental Disease

Family members who care for those with untreated severe mental illnesses face tremendous burdens. One study of relatives of individuals with a severe mental illness showed that more than one-third had to give up leisure time, becoming isolated and often prevented from having company of their own. A fifth of the relatives had to give up their own occupation. And a 2005 study found that compared to a control group, fam ily members of patients with bipolar disorder and major depression had mental health care expenses that were about three times what they would have been in the absence of these diseases.

Families also face the very real risk of violence. A 1997 study focusing on the prevalence of abuse faced by families of individuals with a mental illness found that 32 percent of relatives had been struck on at least one or two occasions. Verbal abuse, threats, and temper outbursts were reported by more than 50 percent of the relatives. The American Psychiatric Association notes that

"Family members are most at risk of a violent act committed by a mentally ill person … [Another study] found that among those who had attacked people prior to their admission [to a psychiatric hospital], 65 percent ... had attacked a family member."

I became aware of this problem in the early 1960s, when my sister with schizophrenia, untreated at the time, violently attacked my mother. In the early 1980s, I began collecting data on the problem, which the mental health community seemed to be ignoring.

I remember the 1984 case of Emily Cannon, a teacher in Charlotte, who wrote a letter to local mental health officials and county commissioners pleading for treatment for her son with schizophrenia. Four days later, she was killed by her son.

As Don Richardson was being installed as President of NAMI in 1986, his son with schizophrenia tried to kill his mother. By 1991, the magnitude of the problem became clear when NAMI released a survey of over 1,400 members; in the preceding year, 11 percent of the severely mentally ill NAMI family members had physically harmed another person.

According to the MacArthur Violence Risk Assessment Study, "the people at highest risk are family members and friends who are in their homes or in the patient's home." Studies attempting to quantify how often family members are the victims of violent acts committed by individuals with severe psychiatric disorders have reported from half to three-quarters.

Mental health organizations have been reluctant to speak out about the risk to families. They have decried the problem of stigma, but failed to note that it is the violent acts by severely mentally ill persons - not the reporting of them - that are the major cause of stigma.

Individuals with severe psychiatric disorders are not more dangerous than the general population - IF they are being treated. Without treatment, some commit acts of violence because of their delusions and hallucinations. And, in the majority of cases, the victims of the violence are family members.

An important reason why I founded the Treatment Advocacy Center was to address the issue of violence against family members and others. It is a sad commentary on today's treatment system that thousands of families live in fear of a mentally ill family member because he or she is not being treated. I am very proud that TAC is addressing this problem by helping make treatment more accessible before crisis occurs.

Families and their ill loved ones deserve better treatment laws so these dangerous situations can be averted. And they deserve to be able to advocate without guilt for the health and safety not only of the one they love, but for themselves as well.

The Treatment Advocacy Center’s mission is to eliminate barriers to treatment. Although our main focus is improving laws and policies to encourage early intervention and sustained treatment, we get enough calls and emails to know that many of our friends are fighting individual battles every day to secure treatment for someone they care about. Following are some strategies to consider before a crisis occurs and when the person is getting treatment. Throughout, there are tips for information you can RESEARCH, MATERIALS you should prepare or have on hand, and ADVOCACY you can do, all to secure safe passage or timely treatment for the person you love.

IMPORTANT NOTE: The types of available public psychiatric services, procedures for their access, and pertinent legal provisions, particularly those concerning assisted treatment, vary widely from state to state. All of the information in this article will not be applicable to each specific jurisdiction. As always, please consult appropriate mental health, advocacy, and/or legal resources to learn about the applicable service mechanisms, procedures, and laws for your state.

The events necessary to trigger most treatment laws are among the most trying and stressful imaginable.

Although the language differs from state to state, many state laws, or interpretations of those laws, require someone to be in danger of physical harm to themself or others before being placed in treatment. Being forced to wait until someone is incapacitated by a severe mental illness and presents an imminent danger often leaves families and treatment providers waiting for an extreme crisis before they can act. As too many family members know, that is a situation full of worry and pressure.

When a crisis does arise, family members must react minute-by-minute to a deluge of circumstances. It is not a time for efficient thought or strategizing, which is why preparation is critical. Now is the time to do research, gather materials, and reach out to key people in case the situation deteriorates, even while working on other fronts to avoid a crisis.

Information is power. The more you know - about the law, the options, and the people you might work with in a crisis - the more effectively you will be able to navigate through the system if such a crisis occurs. To start, get the answers to some basic questions.

What is your state’s commitment law? Know your state’s standard for intervention and familiarize yourself with its provisions for commitments. The statutes for each state are in the Legal Resources section at . Your state/local mental health departments should also have materials summarizing the standards. In the 45 jurisdictions that allow direct petitioning for commitments, the clerk at the local court should have copies of the petition form. Gather printed copies of the criteria for emergency evaluation and civil commitment.

What is the local landscape for treatment? One place to start is with your local chapter of NAMI (the National Alliance for the Mentally Ill). NAMI is a support and advocacy organization for people with psychiatric disorders and their families. Local chapters have biweekly or monthly support meetings; leaders are usually willing to advise on the local treatment system and procedures. Find your chapter via the national hotline at 1-800-950-NAMI (6264).

Also call the courthouse and ask the clerk of the court about the procedures for filing an involuntary commitment petition in your county. Different jurisdictions have different procedures, so always call the county where your loved one lives, not the one where you live (if they are different).

Which screening facility or local emergency room performs emergency psychiatric evaluations? Find out which facility your loved one would likely be transported to in a crisis. Contact them and ask about the process when someone is brought in. What is involved in getting someone committed? And what, if any, resources do they have to help avert crises? (Few facilities have such programs, but it is worth asking.)

What is the process to initiate placement? The process to initiate placement of someone incapacitated by a psychiatric disorder varies from state to state. A law enforcement officer can take a person deemed to meet the state’s “pick-up” standard to a psychiatric facility for an evaluation, although a few states require that the officer first receive authorization from a judge or magistrate. In some states, physicians or other medical personnel can temporarily prohibit the release of a voluntary inpatient or call for an emergency evaluation without prior court approval.

Many states also allow other individuals to directly petition a court to order an evaluation, sometimes defined as “any person,” “interested persons,” family members, or designated mental health department employees.

What is the duration of evaluation? Regardless of the manner in which evaluations arise, almost every state limits duration. Providers must usually decide within 72 hours either that the person continues to meet the placement criteria (so pursue a formal commitment) or that they should be released.

In a three-ring binder, file box, or other easily-transportable storage system, create a CARE kit (Critical Advocacy Resources for Emergencies). A CARE kit is a “ready-file” of materials that you can quickly share with treatment professionals in a crisis.

Psychiatric history summary. It is unlikely that treating professionals will have immediate access to, or time to review, the full medical records of someone brought in for an emergency evaluation. A one-page summary of psychiatric history can be very useful. (And may also be useful as evidence in commitment hearings.) Keep at least five copies of this important document in your CARE kit, so it can be easily and quickly shared with more than one person in a short span of time. Keep it current (update it regularly) and short (one page is best) but be sure it contains the most critical information, including the following.

Recent picture and description. Keep a recent picture of your loved one, a list of vital statistics (such as height, age, weight, hair color), and any pertinent physical medical conditions (such as allergies or diabetes). Ideally, keep these in a format that allows them to be easily faxed or e-mailed to police and mental health agencies. Leave space to add a description of clothing last worn in case that information is needed.

List of emergency numbers. Create, and periodically update, a list of emergency numbers.

Copies of important criteria. Print out a copy of your state’s criteria for emergency evaluations and for civil commitments (as mentioned in the “research” section). That way if anyone along the way contradicts or misunderstands the law, you have a copy of it in hand.

Petition forms. Get blank copies of involuntary commitment forms if your state permits this. Complete any nonincident-related information ahead of time. You may never have to use them, but at least you will have them ready.

Medical release (if applicable). If possible, have your loved one sign a
release that allows you access to his or her medical information. If you have such a document, keep a copy in your CARE kit. (For more details on medical information and privacy laws, see the full story in this issue of Catalyst.)

Advance directive (if applicable). Advance directives are legal documents that allow individuals with mental illnesses to dictate aspects of their care in case they become incapacitated by illness. These documents might include the designation of a person to make treatment decisions should the subject become incapacitated. The specific details of these legal documents vary widely from state to state. Most advance directives are immediately revocable, which is a significant limitation on the effectiveness of these instruments as that can allow individuals to nullify their previous treatment decisions even when suffering from impaired judgment. If your loved one has such a directive, keep a copy in the CARE kit.

Alert your local mental health crisis unit. These outreach workers typically conduct on site evaluations and often are empowered to initiate commitments. They are also likely to be called by law enforcement to assist in crises involving an individual with a psychiatric disorder.

Reach out to your crisis unit. Ask to speak to or meet with the supervisor or director. In that short meeting, in person or via phone, ask for information about the process involved in a commitment, and what would happen to your loved one if he/she arrived at the unit for an involuntary commitment. Get the appropriate contact information for your CARE kit and ask if you can or should provide some information about your loved one for their files. And ask for a tour of the facilities.

If you think a crisis is imminent, alert the unit that you suspect that your family member is on the verge of meeting commitment criteria. Fax over or drop off a copy of your one-page history form for their records. If your state is one of the 42 that offers assisted outpatient treatment (AOT), ask about the steps needed to ensure that AOT can be used on discharge. (See the sidebar for more on this treatment mechanism.)

Alert your local law enforcement agency. Make your local law enforcement agency aware of the person’s condition in case officers are called to initiate an emergency evaluation or respond to a disturbance. Eliminating the element of surprise can help reduce the risk of a call escalating into a crisis.

Reach out to the crisis intervention team (CIT) coordinator, if your community has CIT, or to the commander for your precinct/district. Or ask for an officer who has expressed interest in or knows about mental health issues. It is also often helpful to talk to the 911 supervisor (reach them through the general office number of course, not via 911 itself).

The message to convey is that your loved one has a severe mental illness that might make encounters difficult. Explain specifically, if you can, what happens when the person is symptomatic or delusional - for instance, that he hears voices and cannot easily follow verbal instructions so he may appear to be disregarding officer orders. Or that she has delusions that police officers are aliens and may be unreasonably afraid and unable to comply with commands.

If there is a particular officer or sheriff’s deputy who patrols the area regularly, invite that officer and any local CIT officer to come by to meet your family member when they are well. This can help build some rapport and trust for all involved.

Finally, as with the mental health facility, do not wait for a full-blown crisis before calling law enforcement. If you anticipate an imminent crisis, alert them so they are not caught off guard.

Those who are the most severely ill often cannot get the services that they need. If you face obstacles advocating for needed services for someone you care about, you may want to try some of the following strategies.

What treatment options are available? A person seeking the best possible care for a person suffering from a severe mental illness must first research what treatment options are available. The best and most obvious place to turn is to the professionals presently managing the person’s care, but that is only the beginning of a thorough investigation. The leaders and staff of local NAMI affiliates will not only be familiar with service options, but may offer a better “real world” assessment of what is available than employees of mental health departments, hospitals, or private community providers. Another basic resource is state or local mental health administrators.

What are the eligibility criteria? Most specialized services (such as PACT or ACT teams) are reserved for specific populations. Those advocating for a particular service must also learn the eligibility criteria for these programs.

Does your loved one meet the criteria? Don’t assume the answer is “no.” Ask for written policies governing eligibility. Use the person’s treatment history (for example, repeat hospitalizations) to establish whether they are eligible for those services.

Never accept a first answer, and know what questions to ask. For example, does the community have intensive case managers, intensive family support services, and residential support

services? Visit the local mental health center or mental health service providers and request a tour.

What are the financial incentives to treatment? There is often a financial disincentive for providers to serve those who are most acutely ill - they may require intensive and expensive treatment. One way to counteract this is to document what it costs not to provide those services. For a person who is repeatedly hospitalized, multiply the cost per day by the total number of days. A state or county mental health administrator may appreciate that providing the needed community services or additional inpatient days to more fully stabilize the person’s condition will be less expensive in the long run. Law enforcement may respond to the costs of repeated jailing someone.

For long term use, there are materials in addition to those in your CARE kit that will be useful in dealing with caregivers and providers, whether in an outreach team, outpatient clinic, inpatient facility, or a jail or prison.

Fully documented medical history. Remember that patients have the right to request copies of their own medical records, which can be compiled and saved for future use. Any information/records that can be gathered along the way should be saved in a central file, including the names, addresses, and phone numbers of all previous or current treatment providers. The basic one-page summary is still important to maintain and share - the full history supports more indepth advocacy.

Informal incidences journal. Keep a journal that regularly documents the person’s illness, medications and reactions to or side effects of medications, and any significant/related symptoms or problems. Journal entries should concentrate on observable facts, and use action words. They should be descriptive (not “we had a fight” but “he picked up a heavy frying pan and waved it at my head”). Being able to provide specific dates and detailed descriptions of events is a substantial advantage for someone testifying in a treatment hearing or trying to convince a treating professional of the severity of a person’s illness.

Whether the person is in an inpatient facility or needs psychiatric care in the community, it can be frustratingly difficult to obtain appropriate mental health services from often unresponsive mental health care systems. However, a persistent family member or friend can secure action from these bureaucracies.

Be an advocate first. Building relationships with a service provider and letting them see how much you care about your loved one is vital and demonstrates your value as a member of the treatment team. But don’t get too cozy. It is more important to be an advocate than to be friends with service providers and mental health officials. Feel free to disagree with politeness and persistence when cooperation is not possible. It sometimes may even be necessary to go over someone’s head.

Don’t be stymied by medical privacy laws. Sometimes treatment providers raise concerns about breaching confidentiality as a reason not to talk to someone trying to help another person who is receiving or in need of treatment. Sometimes confidentiality is used inappropriately. Remember that listening is not against the law. Even if treatment providers cannot tell you about someone’s condition or treatment, no privacy law prohibits them from taking information concerning a patient’s condition and psychiatric history. In fact, some would argue that a mental health professional is negligent if they fail to gain as much information about the person’s condition as possible. If nothing else, you may establish a relationship that could at some point be invaluable. (Read a detailed overview of medical privacy laws and some tips on navigating them.)

Call the department of mental health. Call the county department of mental health and explain that you are having a “service delivery problem.” Keep a record of who you talk to at the county level, and try to get in writing whatever information they give you. Make sure you write down exactly what they say. Note the dates of conversations and any actions promised. If you are still not getting a satisfactory answer, follow the same steps with the state department of mental health.

Work your way to the top. Jails, hospitals, and treatment facilities have established chains of command. Work your way up the chain until you get results. For example, the chain of command in an inpatient setting may start with a social worker. From there, contact a nurse, psychologist, or psychiatrist. Next, ask for a treatment team leader or section chief. If those attempts fail, contact the hospital administrator. Every county and state has its own methods for handling grievances, so you need to find out what these procedures are.

Most organizations have oversight from a Board of Directors or Trustees. The identity of board members is a matter of public record. Write them a short letter documenting the problems and lack of responsiveness. The board has a fiduciary responsibility to ensure that the organization’s mission is met and will likely investigate and address your complaints. For publicly funded services, you can work your way up from the director of mental health services to the very top. We have seen well-documented cases get a Governor’s attention - and results.

Keep track of everything. Get the name of everyone you talk to, and their supervisor. Document each attempted contact or conversation by email or fax, which will also politely make it known that you are creating a paper trail that can later be reviewed by supervisors or even in court. If you have to, send a certified letter or even a telegram to the commissioner of mental health in your state highlighting your concerns, detailing your conversations with other county and state staff, and requesting an immediate response. (Once a common way to deliver urgent messages, telegrams are rarely used today because there are faster means of delivering messages. Because they are less common, they definitely get people’s attention.)

Hire an expert. If you can afford it, an expert can be a huge help. Different situations call for different experts. For instance, care providers may react more readily to second opinions from fellow treatment professionals while hospital and community service administers are often more responsive to contacts from attorneys. Getting help in a jail or correctional facility can be easier with the assistance of a correctional expert.

Get help from law enforcement. If the person you are trying to help has repeated contacts with law enforcement, you may be able to get a sheriff or police chief to intervene. Help them understand that getting treatment for your loved one is in everyone’s best interest - not only would appropriate treatment benefit the person, it could help avert a tragedy and remove the burden on local law enforcement created by the person’s symptomatic actions. A call from a sheriff or police chief can be very influential in prioritizing services for someone you care about.

Get the media interested. Television and newspaper reporters cannot cover every story they hear about. But if your situation is particularly egregious, heart wrenching, or representative of a systemic problem, your local media outlet might be interested. Find contact information on their website and focus on a reporter who is in your community, especially if they have covered mental illness or crime issues before. When you call, summarize your story in one sentence and keep your comments focused on one main issue (such as treatment, insight, or criminalization). Picture the headline that you want to see and make that your theme. (“Man jailed for tenth time in five years because the law can’t help him: Mother demands answers.”) If an article is printed that is useful to you, email, fax, and mail copies to those you are trying to influence. Don’t forget to send copies - with a personal note - to your legislator and governor.

TAC ANNOUNCES ADVOCACY AWARD WINNERS: EFFORTS OF UNLIKELY TEAM RESULT IN NEW TREATMENT LAW IN FLORIDA

Congratulations to Seminole County Sheriff Donald Eslinger, Linda Gregory of Jacksonville, and Alice Petree of Sanford, winners

of the national Torrey Advocacy Commendation. The annual TAC award recognizes the courage and tenacity of those who selflessly advocate – despite criticism and opposition – for the right to treatment for those who are so severely disabled by severe mental illnesses that they do not recognize that they need treatment.

Eslinger, Gregory, and Petree won this year’s national Torrey Advocacy Commendation for their successful advocacy for a new mental illness treatment law in Florida.

TAC’s board of directors voted unanimously to recognize all three advocates in an unusual move that paralleled an unusual advocacy partnership. “We are impressed by their heart-felt efforts over more than four years to get a more humane treatment law for Floridians with severe mental illnesses,” said TAC board secretary Dr. Fred Frese. “We commend Sheriff Eslinger, Linda Gregory, and Alice Petree for their incredible dedication and effectiveness in spearheading a complex and critical reform of Florida’s outdatedtreatment law.”

The Florida House of Representatives cited the TAC award in a resolution sponsored by Rep. David Simmons and Rep. Sandra Adams that recognizes these three advocates for “their successful advocacy in honor of Deputy Sheriff Gene Gregory and Alan Singletary and all people with severe mental illnesses who will benefit from their efforts.”

The result of their work is Florida’s new law, which took effect January 1, 2005, that allows assisted (court-ordered) outpatient treatment for people with severe mental illnesses, like schizophrenia and bipolar disorder, who have a history of noncompliance combined with either repeated Baker Act admissions or serious violence. Court-ordered outpatient treatment is a less restrictive, less expensive alternative for those who need intervention but do not require inpatient hospitalization. New statistics from New York, a state with a similar law, show that for those in the program, 74 percent fewer experienced homelessness, 77 percent fewer experienced psychiatric hospitalization, 83 percent fewer experienced arrest, and 87 percent fewer experienced incarceration. Individuals enrolled were also more likely to regularly participate in services and take prescribed medication.

On July 8, 1998, Deputy Sheriff Gene Gregory and Alan Singletary, a man with a history of severe mental illness, died in a 13-hour standoff. Seminole County Sheriff Eslinger vowed to not let their deaths be in vain, and created a Mental Health Task Force to advocate for reforms in mental health and substance abuse services and laws.

With the unlikely team of Alice Petree, the sister of Alan Singletary, and Linda Gregory, the widow of Deputy Sheriff Gene Gregory, Sheriff Eslinger worked, through the task force and with other community groups and stakeholders, to increase awareness of the need for treatment of mental illnesses. With the leadership of the Florida Sheriffs' Association, the efforts of these advocates and the community network they helped to create resulted not only in reforming the Baker Act to allow for assisted outpatient treatment, but also in other beneficial programs for those with mental illnesses such as jail diversion, forensic treatment programs, mental health screening at a county correctional facility, funding for a detox receiving facility, a voluntary identification program, and law enforcement crisis intervention teams.

About the award. The annual Torrey Advocacy Commendation is named for Treatment Advocacy Center president and founder Dr. E. Fuller Torrey, M.D., a nationally known and respected psychiatrist, researcher, and advocate whose unflagging resolve to remove barriers to treatment for people with severe mental illnesses sparked a national reform movement. Recipients make a substantial difference for their community through advocacy, awareness, research, or legislation in this field. Find out how to nominate someone for next year.

"My family has desperately attempted to get him help"
- excerpt of Joy Scoble’s testimony before the Governor’s Task Force on Mental Health, Jan. 19, 2005

My brother has recently been released [from prison] ... Since his release, he’s moved from location to location because he has had fits of rage and the family member or friend, who has been so gracious as to support him, no longer feels comfortable having him live with them. Today, my brother is living on the streets ....

About 4 or 5 years ago, my brother attempted to attack my father ... [He] claimed that he was going to kill my father and when that was done, he was going to go back into the house and kill everyone else ... I do not hold this against my brother ... I know it was something that was triggered by his mental illness ....

For about 5 or 6 years now, my family has desperately attempted to get him help for his mental illness. My mom has pleaded to a judge at one point, to try and have him committed. This was unsuccessful because he’s an “adult” who cannot be forced into help. For years, he’s been thrown out of ... housing because he’s been in fights with other residents ....

At one point, his doctor had put him on [medication] and when family had visited him, there was a significant change ... a few visits after that, he converted back to his depressive state. After questioning him about the medication, he explained that he didn’t think it was working, so he decided to stop taking it ....

I’ve recently contacted my local city police station to inform them that my brother is living on the streets and that if he were to get into any trouble, I would prefer it if he was taken to a local hospital for evaluation ... When I explained that he’s having fits of rage, [they] assured me that if they found him, they’d take him into a hospital. The next day, my mother called the police on my brother because he was trying to get into her house. The police officers showed up, and said they couldn’t take him anywhere against his will.

This is why I’ve felt so helpless … I’ve been told I cannot get help for my brother until he attempts suicide. ... It’s sad that society will not help others until extreme measures are taken.

"Gregory was not the only victim"
- excerpt of Cathy and Mark Katsnelson’s testimony before the Governor’s Task Force on Mental Health, Jan. 19, 2005

On October 17th, 2002, our then 11-year-old son, Gregory, completed his daily homework assignments and after getting permission to go out, jumped on his bike to go and find his friends ... [W]hen Gregory entered the bike path just feet away from our home, he had no idea of the danger he would encounter.

He was suddenly yanked from his bike and brutally murdered and his body left face down in the lake by 26-year-old Ronald Pituch ... We later learned that Gregory was not the only victim that day. Before taking our son’s life, Ronald Pituch had savagely beaten his own mother to death with a bar bell because she had not gotten him a pack of cigarettes. He tied up his 5-year-old niece ... [and] assault[ed] an elderly woman passing by before ending his manic rampage with Gregory’s murder.

... [Pituch] had been diagnosed with paranoid schizophrenia and was refusing treatment and medication for his illness. While his family reported signs of instability in the weeks prior to the violent spree, they were unsuccessful in getting the help from mental professionals that they were desperately seeking. The family was assured many times that he was not homicidal or suicidal although he had demonstrated violent behavior on several occasions, and, as is common among people with severe mental illness, he continued to deny his sickness ....

Yet, with the current laws in New Jersey, no one was able to do anything to prevent the tragedies ... New Jersey is one of only eight states ... where if a person with severe mental illness refuses treatment and medication to control their symptoms, families, caregivers, mental health professionals, and courts find that “their hands are tied.” ....

Because of the limitations of the current law, two innocent people died that afternoon.

HELP AND HOPE FOR FAMILIES, PROVIDERS, CONSUMERS: AFTER 5 YEARS OF AOT, NEW YORKERS SEE VAST IMPROVEMENTS FOR THE SICKEST

“We have witnessed many amazing turnarounds and successes”
- excerpt of Dr. Mary Barber’s testimony at an April 8, 2005, public hearing in New York city on Kendra’s Law. Dr. Barber
is the medical director of the Ulster County Mental Health Department and AOT psychiatrist for Ulster County.

Ulster County Mental Health Department was initially skeptical about AOT. We felt ... court petitions would not really change the behavior of a patient truly resistant to treatment. We guessed ... that while a few extra case management resources might help some patients, court orders would not add much beyond that.

[Today] we feel much differently about AOT ... Intensive case management and oversight by the AOT coordinator benefit patients on enhanced (voluntary) services. However, it must be emphasized that for some patients adding services is not enough and a court order is necessary.

We have done 90 AOT investigations. Of these, 47 people received enhanced services and 15, or 32 percent, have gone on to require an AOT petition from the court. So, for many people, voluntary services are enough, but for a significant minority, court is an important addition. We currently have 23 people on enhanced services and 8 active petitions, so even mandated services do not need to be continued forever. The most common reason for choosing to not renew a petition has been improvement by the patient to the point that they could go on to participate voluntarily in treatment.

We measured hospital and jail days over a three-year period for patients prior to AOT petition and after AOT petition. We found a reduction of over 3,500 hospital days and over 1,000 jail days with petitions. When we separated out the time before a person was placed on petition and compared the period when they received no special services to the period when they received enhanced services, there was only a slight reduction in hospital and jail days. In other words, some individuals needed a court order to be able to remain in the community...

We have witnessed many amazing turn-arounds and successes for people on petitions .... It is clear to us from our experience that AOT petitions have saved patients from more restrictive institutional settings, have saved our communities money, and have most likely kept our communities safer by avoiding the incidents that lead to jail and hospital stays.... The AOT Law essentially says that counties now have ultimate responsibility over their most high-risk, high-need people.

"It is the only thing that has worked for my son"
- excerpt of one mother’s testimony at an April 8, 2005, public hearing in New York city on Kendra’s Law

I am a [professional] with over 30 years of experience in the field of mental health ... I am also the mother of an adult son who has been under court ordered treatment in New York City through the AOT program for over three years ... [Troy*] has ... schizoaffective disorder ... He also suffers from anosognosia, the inability to understand that he is ill.

Troy struggles to understand what has happened to him over the years that he has been ill ... Troy has been hospitalized more than a dozen times ... [and] is unable to see that when he stops taking his medication he becomes psychotic and within a matter of days ... becomes so ill that he has to be rehospitalized.

What Troy has been able to understand, however, is that when he is in the Assisted Outpatient Treatment Program and under a court order, if he violates it ... he will be rehospitalized. Somehow, this has gotten through to him. Troy takes his AOT program and its court order very seriously. It is the only thing that has worked with my son and has made him compliant with his prescribed medications. With this program my son has had fewer hospitalizations. Without this program, and the mandate it represents, my son would be a danger to himself and others ...

I have been nothing short of amazed at the quality of the caring concern with which my son has been treated ... Troy called a meeting of the AOT team to talk about his treatment plan and see if he could be released early ... The whole AOT team attended ... Despite my son’s difficulties articulating and organizing his wishes, [the team] related to Troy with respect and a caring concern ...

On another occasion when my son had to be hospitalized for an extended period of time and a question arose as to whether the halfway house that had been housing him was going to allow him to come back, Troy’s AOT counselor ... was immediately on the case. He made clear to the representative from the halfway house that this was an ill-considered move and that their department would fight tool and nail to have him reinstated at that facility ... the halfway house reversed their decision ...

Family members are frequently called on to provide care for a loved one with a mental illness.1 To function in this capacity, family members need to understand what kind of information they can get regarding their relative’s diagnosis, treatment plan, medications, etc. The following article describes the law - and outlines some creative legal ways to get needed information.

Both consumers and mental health care providers interpret confidentiality laws conservatively, according to a 2003 study.2 This means mental health providers often do not share information with relatives because they think sharing violates confidentiality laws. This also means that family members often do not ask for information, because they do not think they have the right to be informed. Knowing the law may help family members convince providers to share vital information about their relatives.

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) created a national standard for the protection of certain types of health care information. The U.S. Department of Health and Human Services then issued a “Privacy Rule” to implement the requirements of HIPAA. The Privacy Rule limits the circumstances in which individually identifiable health information can be used and disclosed by health care insurers, providers, and clearinghouses. The Privacy Rule refers to this type of information as “protected health information (PHI).”3

The Privacy Rule limits the use and disclosure of PHI by “covered entities.” It does not affect other organizations or individuals. Covered entities can use and disclose PHI with no restriction only for treatment, payment, and health care operations. All other uses and disclosures must be authorized by the individual or be authorized under a section of the Privacy Rule.

Health plans. These are individual and group plans that provide for the cost of medical care, like insurers, HMOs, Medicare, Medicaid, and employer-sponsored group health plans.

Health care providers. All health care providers that use electronic technology in connection with a standard transaction are covered entities. Almost all health care providers meet this requirement.

Health care clearinghouses.4 These are entities that process PHI received from other covered entities.

An individual has the right to review and obtain a copy of his/her PHI. Covered entities must provide PHI to the individual who is the subject of the medical record.5

How it can help. If a family can convince their relative to request a copy of his/her medical records and share it with them, they will be informed of their relative’s condition and treatment.

Restrictions. There are a few exceptions to this rule. An individual does not have the right to review or obtain psychotherapy notes, information compiled for legal proceedings, or medical records from correctional centers.6 A health care professional can deny an individual access to their own records if they believe access could cause harm to the individual or another.7 Also, some state laws limit the rights of mentally ill individuals to act on their own behalf.8 In some states, a mentally ill individual may not be given free access to his/her PHI.

Disclosure to a personal representative

A personal representative is someone legally authorized to make health care decisions on behalf of another individual.9 A personal representative can be the health power of attorney or guardian for the person with a mental illness. Health care providers are required to treat personal representatives the same as they treat the patient.10 This means that personal representatives are entitled to full access to the individual’s medical records.

How it can help. A family member as the health power of attorney or guardian for the relative with a mental illness can access the individual’s medical records and speak with the individual’s doctors. State law, not the Privacy Rule, controls who can be a personal representative to make health care decisions on behalf of the individual.

Restrictions. An exception is when the treating physician suspects the personal representative of abusing or neglecting the person with a mental illness. When this occurs, the health care provider does not have to share information with the personal representative. Disclosure is also limited when a personal representative only has authority to act on behalf of the person in limited or specific health care decisions. In this situation, the personal representative only has access to the PHI that is relevant to their area of authority.11 Also, a covered entity may refuse to share PHI with a personal representative if the person with mental illness objects to the disclosure and the disclosure is permitted but not required under the Privacy Rule.12 Conversely, entities must make disclosures to personal representatives that are required under the Privacy Rule, even if the individual objects.13

Disclosure to a minor’s parent/guardian

In most situations, parents/guardians are considered the personal representatives of their minor children (children under 18 years of age).14 This means that parents/guardians can access medical records on behalf of their children. Even in situations where a parent/guardian does not consent to their minor child’s treatment due to an emergency, a health care provider is able to discuss all health related information with the parent/guardian.

How it can help. Parents/guardians have almost complete access to their child’s PHI. Not only does this section permit parents/guardians to see their children’s medical records, it also authorizes doctors and health care providers to discuss the treatment of a minor with his/her parent/guardian. This can only be used while a person with mental illness is a minor. It does not authorize a child’s PHI to be shared with other family members.

Restrictions. In several situations, parents/guardians are not considered personal representatives of their minor children: Where a state law does not require the consent of the parent/ guardian before the minor can receive a health care service, when a court or law authorizes someone other than the parent/ guardian to make treatment decisions for the minor, or where the parent/guardian agrees to a confidential relationship between the minor and treating health care provider.15 In all these situations, the parent/guardian does not control the minor’s health care decisions, or the minor’s PHI.

Formal authorization

A covered entity must obtain the written permission of the person with mental illness for any use or disclosure of PHI that is not for treatment, payment, or health care operations, or otherwise authorized by the rule.16 This written permission constitutes the authorization for disclosure. The authorization must be written in specific terms. It must state what information is to be used or disclosed, specify the person disclosing and receiving the information, specify the purpose of the disclosure, and have an expiration date.17 The individual making the authorization must be told that he/she can revoke it at any time.18

How it can help. Families of persons with mental illness can get specific information about their relative if the relative is willing to give authorization.

Restrictions. Often this is not a practical choice, since the relative is not willing to give authorization. Also, since authorization under the Privacy Rule must be so specific, it does not provide a general and continuous way for family members to keep track of what is going on with their relative.

Opportunity to agree or object

There is also a less formal process for families to obtain information. A covered entity can provide family members with information if the entity obtains informal permission from the person with the severe mental illness by either asking the person outright or by circumstances that clearly give the person the opportunity to agree or object to the disclosure.19

How it can help. As long as the individual is present and does not object, a provider may disclose information to the family.

Restrictions. This disclosure must be made according to the professional judgment of the covered entity - in most cases, the treating physician.20 An individual’s doctor may feel it is inappropriate to disclose information to the family in front of the patient. Disclosures of this type are permitted, but not required.

Under the concept of “minimum necessary,” providers must limit unnecessary or inappropriate access to an individual’s PHI.21 But this is not an absolute standard; entities can make their own assessment of what part of the PHI is reasonably necessary for a particular purpose.22

Best interest of the individual

Where an individual is incapacitated, in an emergency situation, or not present, providers may make disclosures determined to be in the best interest of the individual.23

How it can help. It is not clear from the Privacy Rule what qualifies as an emergency. However, one source suggests that Alzheimer’s disease can constitute an emergency.24 It seems likely that if Alzheimer’s disease, which affects an individual’s mental function, can be considered an emergency, mental illness could also qualify as an emergency in certain situations. This means that providers can give information to family members about a relative if it is in the best interest of the individual.

Restrictions. Because this disclosure type is limited by the professional judgment of the health care provider, family members cannot depend on getting information in this way.

The role of state law

Under the federal Privacy Rule, state laws are very important. HIPAA sets a national floor for the protection of patient’s rights. States can then add to these rights, and make the rules governing the use and disclosure of PHI more stringent. Only those state laws that are contrary to the federal requirements are preempted.25

This means that the federal law takes precedence when state laws conflict. State laws that provide greater privacy protections or privacy rights, with regards to PHI, still apply.

Twenty-nine states do not have any statutory language guiding the release of medical information to families.26 These states are bound by the rules described in HIPAA. However, there is a trend in health care facilities to identify a contact person for a patient during registration. Only that contact person is given information on the patient.27 This is permissible since most informal disclosures are made based on the professional judgment of the licensed health care provider.

In the remaining 21 states, it is necessary to know the individual state law. Many states have more stringent release laws, which make it illegal to release information pursuant to either the “agree or object” or the “best interest” rule.

1 National Alliance for the Mentally Ill. (April 8, 2001). NAMI letter to the Honorable Tommy G. Thompson regarding the final privacy rule.

2 Marshall, Tina & Solomon, Phyllis. (2003). Professionals’ responsibilities in releasing information to families of adults with mental illness. Psychiatric Services, vol. 54:12, 1626.

8 U.S. Department of Health and Human Services. Questions and answers. (last visited July 28, 2004).

11 OCR HIPAA Privacy Memo, Personal Representatives, Revised April 3, 2003, http://www.hhs.gov/ocr/hipaa/guidelines/personalrepresentatives.pdf.

20 U.S. Department of Health and Human Services. Questions and answers. (last visited July 28, 2004).

24 HIPAAcomply, HIPAA FAQ’s, (site sponsored by Beacon Partners) (last visited July 28, 2004)

26 Marshall, Tina and Solomon, Phyllis. Professionals’ Responsibilities in Releasing Information to Families of Adults with Mental Illness. Psychiatric Services, vol. 54:12, p. 1622 (2003).

27 HIPAAcomply, HIPAA FAQ’s, (site sponsored by Beacon Partners) (last visited July 28, 2004).

Kendra’s Law, New York’s 5-year-old program for court-ordered community treatment for those with severe mental illnesses, is a remarkable success. During assisted outpatient treatment (AOT), 74 percent fewer participants experienced homelessness, 77 percent fewer experienced psychiatric hospitalization, 83 percent fewer experienced arrest, and 87 percent fewer experienced incarceration. Individuals in Kendra’s Law were also more likely to regularly participate in services and take prescribed medication.

Without action by the state legislature, Kendra’s Law will sunset June 30, 2005. Gov. George Pataki released a bill to make Kendra’s Law permanent, noting “The results are clear, Kendra’s Law works.”

“Thanks to Governor Pataki’s leadership, AOT resulted in fundamental changes to New York’s overall mental health system,” said Sharon Carpinello, R.N., Ph.D., Commissioner of the New York State Office of Mental Health, whose office maintains data on the law. “We have seen improved access to mental health services, improved coordination of service planning, enhanced accountability, and improved collaboration between the mental health and court systems ... Individuals with mental illness who participate in AOT are able to make and maintain real gains in their recovery - the data tells us that, and so do the recipients.”

With only about 747 initial orders placing individuals under Kendra’s Law each year, Kendra’s Law primarily helps the most ill. A full 97 percent had at least one psychiatric hospitalization in the 3 years before their court order. When compared with a similar population of mental health service recipients, those placed in AOT were twice as likely to have been homeless, 50 percent more likely to have had contact with the criminal justice system, and 58 percent more likely to have a co-occurring mental illness and substance abuse condition.

“Without AOT, my son would either be in jail or dead,” said Susan* from New York City. “It alone has made a difference for him by helping him to stay on his meds.”

“We were very dubious of Kendra’s Law at the beginning,” said Dr. Mary Barber, associate medical director of the Ulster County Mental Health Department. “We feel differently now ...

We measured hospital and jail days over a three-year period for patients prior to ... and after AOT petition. We found a reduction of over 3,500 hospital days and over 1,000 jail days with petitions. When we separated out the time before a person was placed on petition and compared the period when they received no special services to the period when they received enhanced services, there was only a slight reduction in hospital and jail days. In other words, some individuals needed a court order to be able to remain in the community.”

This very personal documentary chronicles the filmmaker’s mother, Millie, and her family through Millie’s battle with schizophrenia

and her subsequent trials within the system. Millie was just 25 with two small children when she was first plagued by the symptoms of schizophrenia. As mental chaos overwhelmed their mother, Susan and her sister Tina struggled to cope with her. For years, the family’s ignorance and shame kept Millie’s behavior shrouded in a veil of secrecy. Now, after 20 years of transience and inadequate care, Millie finally has a chance to reclaim her life.

A story of madness and dignity, shame and love, this intimate film illuminates a national plight through a family’s struggle and helps dispel stigmas and misconceptions surrounding this illness.

How to get the film: “Out of the Shadow” has been playing at festivals worldwide and is scheduled to air on PBS stations beginning February 2006. Find out about educational guides and get purchasing information online at www.outoftheshadow.com or via phone at 310 636 0116. Distributed through Vine Street Pictures.

Why support the Treatment Advocacy Center? We get results. Since TAC opened its doors in 1998, treatment laws in 17 states have been improved. Today, we continue the fight toward sustained and effective treatment for individuals touched by severe mental illnesses. In doing so, we are constantly connecting experts, the media, and legislators, serving as the hub for ideas on the policies and practices that are working - and the ones that are not.

Most importantly, you can trust that what we say reflects the best interest of our community, because unlike many advocacy groups, TAC does not accept funding from pharmaceutical companies or entities involved in the sale, marketing, or distribution of such products. This also means, however, that our success hinges on support from generous donors like you. Every donation, large or small, makes a difference.

Treatment Advocacy Center ()
200 North Glebe Road, Suite 730
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703 294 6001 (phone)
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Board of Directors
E. Fuller Torrey, M.D., President
Fred Frese, Ph.D., Secretary
James Copple, Treasurer
Judge James D. Cayce
Ray Coleman
Thomas N. Faust
Carla Jacobs
D. J. Jaffe
Kenneth Kress, J.D., Ph.D.
Gerald Tarutis, Esq.

The Treatment Advocacy Center (TAC) is a national nonprofit organization dedicated to eliminating legal and clinical barriers to timely and humane treatment for millions of Americans with severe brain disorders who are not receiving appropriate medical care.

Since 1998, the Treatment Advocacy Center has served as a catalyst to achieve proper balance in judicial and legislative decisions that affect the lives of people with serious brain disorders. TAC works on the national, state, and local levels to decrease homelessness, incarceration, suicide, victimization, violence and other devastating consequences caused by lack of treatment.

The Treatment Advocacy Center is funded by individual donations and The Stanley Foundation. TAC does not accept funding from pharmaceutical companies or entities involved in the sale, marketing or distribution of such products.

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