National Alliance on Mental Illness

"Find Help. Find Hope."
Motto	"You are not alone"
Founded	1979
Founder	Harriet Shetler and Beverly Young
Type	Non-Profit 501c3
Area served	United States
Method	Support, Education, Awareness, Advocacy and Research
Mission	Improving the lives of individuals and families affected by Mental Illness

National Alliance on Mental Illness

The National Alliance On Mental Illness (NAMI) is a nationwide grassroots advocacy group, representing families and people affected by mental disorders in the United States. NAMI provides psychoeducation, research and support for people and their families impacted by mental illness through various public education and awareness activities. The National NAMI organization is based out of Arlington, Virginia. NAMI is organized further into State and Local affiliates, all operating mainly with the work of thousands of volunteers. Members of NAMI are typically consumers of mental health services, family members, and professionals working together toward common goal.

There are over 1,000 NAMI chapters, represented in all 50 states. NAMI has 9 signature programs, many which have been shown to be efficacious in research studies.

  History

NAMI was founded in Madison, Wisconsin by Harriet Shetler and Beverly Young. The two women cared for sons diagnosed with schizophrenia, and were tired of their sons being blamed for their mental illness. Unhappy with the lack of services available and the treatment of those living with mental illness, the women sought out others with similar concerns. The first meeting held to address these issues in mental health was much larger than expected, and eventually led to the formation of the National Alliance on Mental Illness.

Mission

NAMI works to keep family safety nets in place, to promote recovery and to reduce the burden on an overwhelmed mental health care delivery system. The organization works to preserve and strengthen family relationships challenged by severe and persistent mental illness. Through peer-directed education classes, support group offerings and community outreach programs, NAMI's programs and services draw on the experiences of mental health consumers and their family members. They learned to manage mental illness successfully and are trained by the organization to help others do the same. In addition, NAMI works to eliminate pervasive stigma, to effect positive changes in the mental health system and to increase public and professional understanding about mental illness.

Structure

The National Alliance on Mental Illness is organized into state and local city or county wide affiliates in an attempt to more accurately represent those in the surrounding communities. National and State NAMI Organizations function to provide Governance, Public Education, Political Advocacy, and management of NAMI's Educational Programs. Providing support for mental health consumers occurs at more local levels, and typically involving assistance in obtaining mental health resources, scheduling and administration of NAMI's programs, and local meetings and events for NAMI members in the community.

Programs

The National Alliance on Mental Illness offers an array of support and education programs at no cost for individuals and families. The programs are set up through local NAMI Affiliate organizations, with different programs varying in their targeted audience.

The NAMI Programs address multiple components of the psychiatric needs facing people who struggle with mental illness. Those needs can be visualized as a "three-legged stool" with access, diagnosis, and treatment as the three legs. The first leg is lack of access: sixty-seven percent of people with a DSM-IV diagnosis are not in any type of treatment, according to a 2005 article in the New England Journal of Medicineby Kessler and colleagues. Second is a need for correct diagnoses: fifty percent of people who received mental health treatment, in any setting, had no psychiatric diagnosis, according to Kessler and colleagues. The third issue is lack of effective treatment practices: over the last fifteen years, the field made great advances in reaching out and effectively treating people with mental illness. Kessler and colleagues showed that the treatment rate for people with serious mental disorder rose from 24.3 percent in 1990–1992 to 40.5 percent in 2001–2003.

NAMI Family-to-Family

The NAMI Family-to-Family Education Program is a free 12-week course targeted toward family and friends of individuals with mental illnesses. The courses are taught by a NAMI-trained family member of a person diagnosed with a psychiatric disorder. Family-to-Family is taught in 44 states, and two provinces in Canada. The program was developed by Clinical Psychologist Joyce Burland, PhD.

Purpose

The Family-to-Family program provides general information about mental illnesses and how they are currently treated. The programs cover mental illnesses including Schizophrenia, Depression, Bipolar Disorder, etc.), as well as the benefits and side effects of medications. Family-to-Family, like the rest of NAMI programs, take a biologically-based approach to explaining the mental illnesses and treatments.

In addition to providing information on mental illness, the Family-to-Family program teaches coping skills and the power of advocacy to students. Empathy is hoped to be gained by students' better understanding of the subjective experience living with a mental illness entails. Special workshops also teach problem solving, listening, and communication techniques. In regards to advocacy, Family-to-Family provides family members with guidance on locating support and services within surrounding areas and information on current advocacy initiatives dedicated to improving available services.

Evidence Basis

The NAMI Family-to-Family program has shown to improve family empowerment, the way family members problem solve internal problems, and reduced the anxiety of participants in randomized controlled trials; A finding which was shown to persist 6 months later. These studies confirm preliminary findings that Family-to-Family graduates describe a permanent transformation in the understanding and engagement with mental illness in themselves and their family. Because a randomized controlled trial is at risk of poor external validity by mechanism of a Self-selection, Dixon and colleges sought out to strengthen the evidence basis by confirming the benefits attributed to Family-to-Family with a subset of individuals who declined participation during initial studies.

The NAMI Family-to-Family program was found to be effective in increasing Schizophrenia patient caregivers' self-efficacy while reducing a subjective burden and need for information. In light of recent research, Family-to-Family was added to the SAMSHA National Registry of Evidence-Based Programs and Practices (NREPP).

NAMI Peer-to-Peer

The NAMI Peer-to-Peer is a 10-week educational program aimed at adults diagnosed with a mental illness. The NAMI Peer-to-Peer program describes the course as a holistic approach to recovery through lectures, discussions, interactive exercises, and teaching stress management techniques. The program provides a "toolkit" of information, teaching about the various mental disorders' biology, symptoms, and relation to personal experiences. The program also teaches about interacting with healthcare providers as well as decision making and stress reducing skills. The Peer-to-Peer philosophy is centered around certain values such as individuality, autonomy, and unconditional positive regard.

Preliminary studies have suggested Peer-to-Peer provided many of its purported benefits (e.g. self-empowerment, disorder management, confidence).Peer interventions in general have been studied more extensively, having been found to increase social adjustment 

NAMI In Our Own Voice

The NAMI In Our Own Voice (IOOV) program started as a mental health consumer education program for people living with schizophrenia in 1996. The program was based on the idea that those successfully living with mental illness were experts in a sense, and sharing their stories would benefit those with similar struggles. The program approached this by relaying the idea that recovery is possible, attempting to build confidence and self-esteem. Because of the initial success of the and positive reception, NAMI In Our Own Voice also took on the role of public advocacy.

NAMI In Our Own Voice involves two trained speakers presenting personal experiences related to mental illness in front of an audience. Unlike the majority of NAMI's programs, In Our Own Voice consists of a single presentation educating groups of individuals with the acknowledgement many are likely unfamiliar mental illness. The program's aims today include raising awareness regarding NAMI and mental illness in general, addressing stigma, and empowering those affected by mental illness.. Other than those directly affected by mental illness, In Our Own Voice often educates groups of individuals like law enforcement, politicians, and students.

In Our Own Voice has been shown to be superior at reducing self stigmatization of families when compared to clinician led education.  Research into the effectiveness of the NAMI In Our Own Voice program has shown the program also can be of benefit to Graduate level therapists and adolescents.

NAMI Basics

The NAMI Basics Program is a six-session course for parents or other primary caregivers of children and adolescents living with mental disorders. NAMI Basics is conceptually similar to NAMI Family-to-Family in that it aims to educate families, but recognizes providing care for a child living with mental illness presents unique challenges in parenting, and that mental disorders in children typically manifest differently than in adults. Because of the development of the brain and nervous system throughout childhood and adolescence, information regarding mental illness biology, presentation, is fundamentally different than with adults. The NAMI Basics program has a relatively short time course to accommodate parents' difficulty in attending because of their caregiver status.

NAMI Connection

The NAMI Connection Recovery Support Group Program is a weekly support group connecting adults living with mental illness in a structured setting. The program is reserved for adults living with mental illness in order to promote self-disclosure by maintaining a confidential and relaxed environment. The support groups are led by trained facilitators who are considered to be "living in recovery" themselves.

NAMI On Campus

Students promoting a university affiliated NAMI On Campus organization

NAMI On Campus is an initiative for university students to start NAMI On Campus organizations within their respective universities. NAMI On Campus was started to address the mental health issues of college aged students. Adolescence and early adulthood are periods where the onset of mental disorders are common, with 75 percent of mental disorders beginning by age 24. When asked what barriers, if any, prevented them from gaining support and treatment, surveys found stigma to be the number one barrier.

Funding.

NAMI receives funding from both private and public sources, including corporations, federal agencies, foundations and individuals. NAMI maintains that it is committed to avoiding conflicts of interest and does not endorse nor support any specific service or treatment. Records of NAMI's quarterly grants and contributions since 2009 are freely available on its website.

Criticism

The funding of NAMI by multiple pharmaceutical companies was reported by the investigative magazine Mother Jones in 1999, including that an Eli Lilly & Company executive was then "on loan" to NAMI working out of NAMI headquarters.

During an investigation into the drug industry’s influence on the practice of medicine U.S. Senator Chuck Grassley (R-IA) sent letters to NAMI and about a dozen other influential disease and patient advocacy organizations asking about their ties to drug and device makers. The investigation confirmed pharmaceutical companies provided a majority of NAMI's funding, a finding which led to NAMI releasing documents listing donations over $5,000.

Changing the law

HEALTH PROVIDERS, CAREGIVERS BOTH FRUSTRATED

Liz Szabo, USA TODAY

 Former representative Patrick Kennedy speaks at #IWillListen Day in LOVE Park in Philadelphia to raise awareness and fight the stigma surrounding mental illness in 2014.

(Photo: Mark Stehle, AP Images for TCOPR)

When in doubt, health providers tend to err on the side of withholding information, says Patrick Kennedy, a former Rhode Island congressman who advocates for better care of the mentally ill.

Hospital administrators, accustomed to avoiding malpractice suits, have brought the same defensive approach to patient privacy, Kennedy says. “The medical community’s perception is that there’s a liability if they share any kind of information,” he says.

Tracey Davis-Witmyer  says health care providers have often refused to talk about her brother's care, even when HIPAA allows it.

The Reading, Pa., woman takes care of her 38-year-old brother, who has bipolar disorder and intellectual disabilities. Although he lives with her, her brother often wanders off. Once, he was missing for a week.

Yet when Davis-Witmyer went to a local emergency room to search for him, hospital staff refused to even acknowledge whether he was there. They told her that confirming his presence in the hospital would have violated HIPAA. It would not have.

“Doctors are afraid to say anything because they think the HIPAA police are at the door,” says Manderscheid, of the National Association of County Behavioral Health and Developmental Disability Directors.

In fact, HIPAA fines are much rarer than many health providers assume.

The Department of Health and Human Services, which oversees HIPAA enforcement, has fined health providers just 30 times since 2003, when the privacy rule took effect, for a total of $32.3 million. None of these fines involved the care of people with mental illness or their caregivers.

Caregivers aren’t the only ones frustrated by HIPAA.

The law sometimes can prevent doctors from sharing information with each other, Lieberman says. That has made it difficult for Lieberman to consult on the care of other patients.

James Cornick of Des Moines stands for a portrait in his home holding a binder with information on his son Jeff, who committed suicide in the Polk County Jail.

(Photo: Zach Boyden-Holmes, The Des Moines Register)

Although James Cornick’s son, who suffered from bipolar disorder, went to jail six times, his medical records never followed him, even within the same correctional facility, says Cornick, of Des Moines, Iowa. So when Cornick’s son was arrested in January 2015 for a parole violation, no one put him on suicide watch. He strangled himself in his jail cell at 46.

Health and Human Services has tried to clarify what HIPAA does and doesn’t allow. In 2014, it issuedguidance about when health providers are allowed to share information.

Bills introduced in the House of Representatives by both Tim Murphy, the Pennsylvania Republican, and Doris Matsui, the California Democrat, would require the Secretary of Health and Human Services to include that guidance into regulation, giving it the force of law.

Legislation from Matsui and Connecticut's Sen. Chris Murphy also would provide $5 million this year, along with additional funding in future years, to educate health providers about HIPAA.

But guidance and education won’t be enough to fix a broken law, Tim Murphy says.

Under HIPAA, families are often treated “like the enemy,” Tim Murphy says. “What we’re trying to allow is for families to facilitate care. We call it compassionate communication.”

His bill would allow health providers to disclose a patient’s diagnosis, treatment plan, appointment schedule and medications to a “responsible caregiver” if the patient has a serious mental illness, and if the information is needed to “protect the health, safety or welfare of the individual or general public.”

Rep. Tim Murphy, R-Pa., chairs a congressional hearing on the shortage of beds for in-patient psychiatric care.

(Photo: H. Darr Beiser, USA TODAY)

According to Tim Murphy's bill, health providers could share information if it’s needed for “continuity of treatment;” if failing to disclose the information would “contribute to a worsening prognosis or an acute medical condition;” or if the patient has a “diminished capacity to fully understand or follow a treatment plan” or could become “gravely disabled in absence of treatment.”

Tim Murphy says his bill doesn’t allow providers to share psychotherapy notes, which are not included in medical records.

Several prominent mental health groups – including NAMI, the Treatment Advocacy Center and theAmerican Psychiatric Association – have endorsed Tim Murphy’s bill.

“It just doesn’t make sense to shut families out of the kind of basic information that they need to serve as caregivers,” NAMI's Honberg says. “Nobody is talking about revealing intimate details of the psychotherapeutic relationship or sexual history or that kind of stuff. We’re talking about diagnosis, treatment and risk factors.”

House Speaker Paul Ryan, R-Wisc., has pledged to move Tim Murphy’s bill forward, citing the need to prevent violence by people who are mentally ill.

The medical profession needs to “fundamentally change the culture,” Patrick Kennedy says. “The best way to do that is to change the law.”

 An alternative approach

EDUCATING HEALTH PROFESSIONALS

Some advocates for people with mental illness say Tim Murphy's bill goes too far.

The proposals have encountered stiff opposition from groups such as the American Civil Liberties Union and the NAACP, which say the bills interfere with patients’ civil rights. They say the bill sets a dangerous precedent that could allow lawmakers to begin stripping privacy protections from people with other medical conditions.

Assurances of confidentiality are critical for people with mental illness, perhaps “more than in any other area,” says the Bazelon Center's Mathis. The stigma of mental illness already prevents many people from seeking treatment.

“Privacy rights are critical for people with mental illness, just as they are for anyone else, to ensure that they get good treatment,” Mathis says. “If people don’t feel like they have privacy, they aren’t going to be forthcoming when they see a medical professional.”

Policy makers have other ways to encourage doctors to engage families, according to Mathis.

Hospitals and health insurers could require health providers to work with families as part of their contracts, she says.

“That would do more than these bills in Congress, which eviscerate people’s privacy rights,” Mathis says.

Some advocates for domestic violence victims also oppose the bills, arguing that they could allow abusers to gain access to a spouse’s mental health records.

Although Tim Murphy’s bill states that health information may not be shared with someone who has a “documented history of abuse,” that may not be enough to protect domestic violence victims, according to a statement from the National Taskforce to End Sexual and Domestic Violence. The group notes that many abusers have no criminal record.

Rep. Matsui, who aims to simply clarify HIPAA rather than change it, says she’s concerned that the exceptions to HIPAA included in Tim Murphy’s bill could create even more confusion.

“If you give that list to a health provider, you are going to have more instances where people don’t share,” Matsui says. “Providers will say, ‘I can’t meet all these criteria.’”

Changing HIPAA wouldn't necessarily change the way doctors and hospitals act, says Mark Rothstein, a former advisor on health privacy to the Secretary of Health and Human Services. He notes that many states have their own patient privacy laws.

Columbia's Dixon says she can usually persuade patients to include their families, in spite of these obstacles.

People with mental illness are often willing to include their families in their care, if doctors take the right approach, Dixon say. More than 90% of the patients in the OnTrackNY program that she directs  — which aims to intervene early, before people have been sick for very long — have agreed to allow contact with families, she says. People often have more self-awareness early in their illness and may be more likely to recognize that they need help.

“We’re all ambivalent about our families,” Dixon says. “Why wouldn't someone with mental illness be ambivalent, too? If someone were to ask me, ‘Lisa, is it OK if I talk to your family members about your care?’ I would say, ‘It depends,’” Dixon says. “I might say, ‘I don’t want you talk to this family member, but this one is OK.’”

If patients are reluctant to include their parents in care, Dixon asks them why. “We ask, ‘What are your concerns? Why would not want your family involved in your care?’ Sometimes, they don’t want to be a burden.” With this approach, Dixon says, “it’s only the rare case who doesn’t give permission. And if you don’t get permission the first time, you ask again in a few weeks.”

Yet family involvement is all too rare. Although early intervention programs like OnTrackNY routinely include families, those programs are the exception, not the rule.

“We’re not anywhere close to where we need to be in this,” Dixon says.

Lisa Powell says she wishes her son's health care providers had worked harder to include her.

Her son, Oscar Morlett, began acting differently just before he turned 19. He stopped seeing his friends; his speech became a jumble. At first, Powell assumed her son was using drugs and sent him to rehab. “I know how to deal with situations like that,” says Powell, of Orange County, Calif., who has other family members who suffer from addiction, “but this was beyond me.”

Her son's condition deteriorated; he became psychotic and sometimes threatened her with violence. Yet no one has ever told her his diagnosis, although he's now 23, Powell says. There were even times when his health providers refused to tell Powell the time and date of his next mental health appointment, even though she was expected to drive him.

Oscar Morlett, who suffers from serious mental illness, as photographed by his mother, Lisa Powell.

(Photo: Lisa Powell)

Her son began to imagine that his stepmother was a spy. On Aug. 9, 2013, Morlett was arrested and charged with killing his stepmother with an ax. After more than two years in jail in Orange County, a judge finally found him competent to stand trial in February, Powell says.

“No one would listen to me,” says Powell, who visits her son in jail once a week. Because he has signed a waiver, health staff at the jail are now allowed to update her on his care.

During one visit, Powell says her son was in despair over his mental illness, and what had become of his life. "He said, 'Mom, I didn't ask for this. Please pray for me.'"

Mental illness: Families cut out of care

PRIVACY LAW LEAVES LOVED ONES ON THE SIDELINES

                WITH TRAGIC RESULTS

                               Liz Szabo, USA TODAY

A law's unintended consequences

FAMILY STRUGGLED TO SAVE SON

Chip and Gail Angell would have paid any price to save their son.

They weren’t given the chance.

Their 39-year-old son Chris, who suffered from schizophrenia, refused to allow his doctors to talk to his parents, even though they were his primary caregivers.

So the Angells weren’t able to correct their son’s medical chart, which incorrectly listed the young man as uninsured. They weren’t able to plead with doctors not to base their son’s treatment on cost.

“Whenever we tried to get Chris into the hospital, we always ran into the fact that doctors wouldn’t talk to us,” says Chip Angell, of Brooklin, Maine, who says his son’s doctor never returned his calls. “Some doctors think they’re protecting the privacy rights of the patient. Others simply use privacy as an excuse because they don’t want to talk to someone with an idea contrary to their own, or because they can’t be bothered to call someone back.”

Although a federal law on patient privacy was written to protect patients’ rights, the Angells and a growing number of mental health advocates say the law has harmed the care of adults with serious mental illness, who often depend on their families for care, but don’t always recognize that they’re sick or that they need help.

Advocates say privacy law prevents care of mentally ill. Chip Angell lost his son Chris to suicide.USA TODAY

The federal law, called the Health Insurance Portability and Accountability Act, or HIPAA, forbids health providers from disclosing a patient’s medical information without consent.

Unlike patients with physical conditions, people with serious mental illness often need help making decisions and taking care of themselves, because their illness impairs their judgement, says Jeffrey Lieberman, chairman of psychiatry at the Columbia University College of Physicians and Surgeons and director of the New York State Psychiatric Institute. In some cases, patients may not even realize they’re sick.

Excluding families can have a devastating impact on patients like these, Lieberman says.

Many health providers don’t understand what HIPAA actually allows them to say. As a result, they often shut families out, even in circumstances in which they’re legally allowed to share information, says Ron Manderscheid, executive director of the National Association of County Behavioral Health and Developmental Disability Directors.

USA TODAY

Mental Illness: The Cost of Not Caring

Some doctors refuse to even listen to families such as the Angells, although doing so doesn’t violate HIPAA. Others exclude families even when patients themselves don’t object.

While many people in the mental health community agree there’s a problem, advocates disagree about how to fix it.

Three members of Congress — Rep. Doris Matsui, D-Calif., Sen. Chris Murphy, D-Conn. and Rep. Tim Murphy, R-Pa. — have introduced legislation to educate health care providers about what HIPAA does and doesn’t permit.

Tim Murphy also wants to change the law itself, creating a special exception to the privacy rule in cases in which the health of people with serious mental illness would suffer if their families aren’t involved in their care.

When families can’t care for loved ones with serious mental illness, patients pay the price, sometimes ending up homeless, in jail or dead, says Tim Murphy, a child psychologist. “The need for this bill,” he says, “is measured in lives lost.”

Opponents of Tim Murphy’s bill charge that it would trample on patient’s privacy rights. Without the guarantee of confidentiality, some people with mental illness would avoid seeking treatment, says Jennifer Mathis, director of programs at the Bazelon Center for Mental Health Law.

Some say that the medical profession needs to undergo a cultural change, so that doctors are encouraged to reach out the caregivers of people with serious mental illness, rather than shun them.

The Angells say HIPAA denied them the chance to prevent a tragedy.

When their son was discharged from the hospital, a doctor wrote him a prescription for low-cost pills instead of a more expensive injectable treatment, Chip Angell says. That was in spite of the fact that the young man had a long history of refusing to take pills and was “doing very well” on the injections, medical records show.

“If we had been able to talk to the doctor,” says Chip Angell, his voice breaking, “we could have told him that no matter how much this drug cost, we’d have paid for it.”

Their son, a gifted tennis player with a 7-year-old daughter, sank into a deep depression as the effects of the injectable medication wore off.

In April 2012, six weeks after being discharged from the hospital, their son tried to kill himself by attaching a hose to the exhaust pipe of the family Volvo and filling the interior with deadly carbon monoxide gas. The car overheated and caught fire, with their son inside.

He didn’t survive.

Psychiatrists have a long history of keeping families at arm’s length, says Harvey Rosenthal, executive director of the New York Association of Psychiatric Rehabilitation Services. For much of the 20th century, many psychiatrists saw parents as the source of a patient’s problems.

Yet today, a growing body of research demonstrates that families play a crucial role in recovery from serious mental illness, says Lisa Dixon, a professor of psychiatry at Columbia University Medical Center in New York.

Family involvement is “extraordinarily important” for people with serious mental illness, says Dixon, who directs OnTrackNY, an intensive, early intervention for young people who experience psychosis for the first time. “Often, you have family members who are the first to notice that something is wrong, who are there to try to help their child and get their child into some sort of treatment.”

A recent National Institutes of Health study, which focused on such early intervention, found that family education and support were key parts of a package of care. Young people who received this care had better quality of life and were more likely to return to work or school, according to a 2015 study published in the American Journal of Psychiatry.

A British study found that family involvement can be lifesaving.

Deaths from unnatural causes – such as suicide, drug abuse and injuries – were 90% lower among people with schizophrenia whose families were involved throughout their care, according to a study that followed more than 500 patients over 10 years, published last year in The Journal of Nervous and Mental Disease.

Families often provide food and housing for their loved ones, help them apply for work or school programs, drive them to appointments, pick up prescriptions and coordinate the care of countless doctors, nurses and social workers. When needed, families bail them out of jail.

“When everybody else goes home, the families that are the ones that step up and provide care,” says Ron Honberg, national director of policy and legal affairs at the National Alliance on Mental Illness, or NAMI. “They are always there, when no one else is.”

Many caregivers feel unprepared to help loved ones with serious mental illness, which can strike suddenly in adolescence or young adulthood. Many say they get little or no guidance from health providers.

"I never really understood the illness," says Creigh Deeds, a Virginia state senator whose 24-year-old son killed himself in 2013, after stabbing his father repeatedly.

"I wanted to go through some things that I had observed and bounce ideas off them, find out what they thought I should be doing, what their long-term view for Gus was," says Deeds, an attorney who has become a mental health advocate since his son's death. "I wanted to talk to someone to develop a long-term plan for my son.”

Deeds says health care providers refused to provide even short-term guidance about what to do after his son was discharged from the hospital. "Twice, my son came home from hospitals to me," Deeds says "I was never given instructions. I was never given help. ... Without that information, I was wallowing in ignorance.”

Pat Milam looks out the window of his dining room in Harahan, La. Pat and Debbie Milam’'s 24-year-old son, Matthew, took his own life in 2011, eight days after he was discharged from a psychiatric ward in New Orleans.

(Photo: Edmund D Fountain, for USA TODAY)

Pat Milam, whose son had schizophrenia and bipolar disorder, says he begged the doctors treating his son at a psychiatric hospital for instructions in how to take care of someone so sick. When hospital staff ignored his emails, Milam asked them to walk him through the care of a hypothetical adult child.

“I sent a fax to the hospital administrator,” says Milam, of Harahan, La. “I said, ‘We don’t have to talk about my son. Let’s talk about someone who is severely mentally ill who is about to come home from the hospital.’”

No one answered him.

Milam’s son killed himself at age 24 in 2011, eight days after leaving the hospital.

NAMI has long recognized that caregivers need help. Its Family to Family program educates people about the nature of mental illness and ways to provide support, Dixon says. Families who have a better understanding of their loved one’s condition can provide better care, she says.

“Family members need information,” Dixon says. “They need to know how to help their child or loved one. They’re stressed out and anxious and terrified and guilt-ridden.”