I have many cherished friends living with major, "invisible" health challenges. Everyday they work very hard to prevent others from knowing of their struggles. They work to "pass" as being just another face in the crowd.
If the mental health system was sane…By Hopeworkscommunity There would be a range of services availible reflecting the human needs of those it serves. Those services would be availible to those that need them. Those services would be based on what works, not what makes money, reflects any particular philosphy or interest, and not because it is what we are used to doing. Asking for help would not label someone, brand them, be a cause of shame, a source of discrimination. Asking for help should not be a problem. It would realize that lack of a place to live, lack of food, lack of adequate clothing, lack of a job are frequently barriers and problems for the people they serve and address them in a direct and effective manner. It would know that inadequate health and inadequate health care are common problems for the people they serve and be part of an effort to serve the entire person in an integrated fashion. The goal would be to empower, educate, and support people towards gaining control over their lives so as to maximize their chances of leading happy, meaningful and successful lives. This would not be empty words, but a passionate conviction that fuels and structures everything done in the system. It would not mistake the people it serves for the labels it places upon them. It would know that the most important thing about help is that it is what you do with people and not what you do to them. It would see itself as partnering with the people it serves. It would know that people can say no and that not be a symptom of illness or distress. It would view peoples values, hopes, thoughts, and aspirations as a source of strength and not a symptom of illness. It would take substance abuse ultimately seriously. Drinking and drugging are the two primary ways people with mental health issues try to treat themselves. It would make sure that one of the core experiences that someone seeking help has is contact and interactions with others who have dealt with similiar issues. It would treat seriously the idea that you can learn from the experience of others and them from you. It would not tell people who have hard times or more problems they have failed or are failures. It would take the issue of trauma seriously. Knowing how people have been hurt and not being part of hurting them further should be cornerstones of the system. It would treat the issue of what happens in jails and prisons to people with mental health issues as a moral outrage and the impulse to do something about it as a moral necessity. It would be honest about the risks and benefits of psychotropic medication. Help people to make real and informed choices. It would treat families as important and not as irrelevant or a threat to what it is doing. It would treat justice as a driving force and value in everything it does. It would be honest with the people it serves about what it doesnt know if it wants them to have trust in what it does know. It would attack the issue of suicide with passion. No one should ever feel like death is the best solution to life. It would tell people that no problems make you less human, It would view hope as realistic and know that when they dont they do more harm than good. Larry Drain Submitted by Jennifer Dochod, Legislative Liasion for DBSA Tennessee. The brief summary by Mr. Murphy's office highlights the points in the proposed Bill he drafted. Tim Murphy U.S. Congressman for the 18th District of Pennsylvania Short Summary of The Helping Families In Mental Health Crisis Act (H.R. 3717) Ensuring Psychiatric Care for Those in Need of Help the Most Rep. Tim Murphy, PhD Mental illness does not discriminate based on age, class or ethnicity. It affects all segments of society. More than 11 million Americans have severe schizophrenia, bipolar disorder, and major depression yet millions are going without treatment as families struggle to find care for loved ones. To understand why so many go without treatment, the Energy and Commerce Subcommittee on Oversight and Investigations launched a top-to-bottom review of the country’s mental health system beginning in January 2013. The investigation revealed that the approach by the federal government to mental health is a chaotic patchwork of antiquated programs and ineffective policies across numerous agencies. Not only is this frustrating for families in need of medical care, but when left untreated, those with mental illness often end up in the criminal justice system or on the streets. The mentally ill are no more violent than anyone else, and in fact are more likely to be the victims of violence than the perpetrators, but individuals with untreated serious mental illness are at an increased risk of violent behavior. Tragically, undertreated mental illness has been linked to homicides, assaults, and suicides. The Helping Families In Mental Health Crisis Act (H.R. 3717) fixes the nation’s broken mental health system by focusing programs and resources on psychiatric care for patients and families most in need of services. The legislation: EMPOWERS PARENTS AND CAREGIVERS What the investigation found: Physicians are often unwilling to share or receive information with loved ones about an individual who has a serious mental illness and is experiencing a psychotic break because of complicated federal rules on communicating with immediate family members and caregivers. This scenario is especially problematic for parents of young adults with mental illness because psychosis begins to manifest between ages 14 and 25. Clarifies Health Information Portability and Accountability Act (HIPAA) privacy rule and the Family Educational Rights and Privacy Act so physicians and mental health professionals can provide crucial information to parents and caregivers about a loved one who is in an acute mental health crisis to protect their health, safety, and well-being. 2332 Rayburn House Office Building | Washington, DC 20515
The Helping Families in Mental Health Crisis Act (H.R. 3717), Rep. Tim Murphy 2 FIXES THE SHORTAGE OF INPATIENT PSYCHIATRIC BEDS What the investigation found: There is a severe lack of inpatient and outpatient treatment options. Seventy years ago, the country had 600,000 inpatient psychiatric beds for a country half the size. Today, there are only 40,000 beds. What the legislation does: Increases access to acute care psychiatric beds for the most critical patients by making two narrowly tailored exceptions to the Institutions for Mental Disease (IMD) exclusion under Medicaid. The IMD exclusion is what originally caused the shortage of psychiatric beds. ALTERNATIVES TO INSTITUTIONALIZATION What the investigation found: Approximately forty percent of individuals with schizophrenia do not recognize they have a mental illness, making it exceedingly difficult for them to follow through on a treatment regimen. REACHING UNDESERVED AND RURAL POPULATIONS What the investigation found: The delay between a first episode of psychosis and the onset of treatment averages 110 weeks. Early diagnosis and medical intervention improves outcomes dramatically, but there is only one child psychiatrist for every 7,000 children with a mental illness or behavioral disorder. What the legislation does: Modeled on a successful state project in Massachusetts, the bill advances tele-psychiatry to link pediatricians and primary care physicians with psychiatrists and psychologists in areas where patients do not have access to mental health professionals. DRIVING EVIDENCE-BASED CARE What the investigation found: The federal government spends $125 billion annually on mental health, but there is little interagency coordination on programs, nor does the federal government collect data on how mental health dollars are spent or whether those dollars are resulting in positive health outcomes. What the legislation does: Creates Assistant Secretary for Mental Health and Substance Use Disorders within the Department of Health and Human Services to coordinate federal government programs and ensure that recipients of the community mental health services block grant apply evidence-based models of care developed by the National Institute of Mental Health. The Assistant Secretary will ensure federal programs are optimized for patient care rather than bureaucracy.
What the investigation found: STABILIZING PATIENTS BEYOND THE ER Access to physician-prescribed medication is vital for vulnerable individuals in avoid acute mental health crisis. Current policies that permit only “one drug” per therapeutic class policy ignore the clinical needs of individuals with mental illness who rely on vital, non-interchangeable prescription drug therapies. What the legislation does: Protects certain classes of drugs commonly used to treat mental illness so physicians have prescribe the right medication for those on Medicare and Medicaid similar to the protected classes for persons with epilepsy and cancer. ADVANCES CRITICAL MEDICAL RESEARCH What the investigation found: The National Institute of Mental Health measures public health outcomes to develop medical models of care. For example, the Recovery After Initial Schizophrenia Episode (RAISE) project shows earlier intervention with treatment for a person at risk of developing full-blown schizophrenia allows patients to lead functional lives. The NIMH also excels at basic medical research, but lacks the financial resources. What the legislation does: Authorizes the BRAIN research initiative at the National Institute of Mental Health and encourages the agency to undertake additional research projects on serious mental illness and self- or other-directed violence. HIGH QUALITY COMMUNITY BEHAVIORAL HEALTH SERVICES What the investigation found: Community Mental Health Centers receiving funds from the federal government receive lower reimbursements federal insurance programs than comparable care facilities. What the legislation does: Applies rigorous quality standards for a new class of Federally Qualified Community Behavioral Health Clinics (FQCBHC), requiring them to provide a range of mental health and primary care services. DEPARTMENT OF JUSTICE REFORMS What the investigation found: Between twenty and fifty percent of the incarnated system inmates have a mental illness. Mental health courts have provided a cost-effective and responsible alternative to incarcerating the mentally ill. What the legislation does: So patients are treated in healthcare system and not warehoused in the criminal justice system, the bill reauthorizes mental health courts and requires the Department of Justice to collect more data on interactions between the police and the mentally ill. The bill also authorizes Byrne Justice Assistance Grants (JAG) to be used for mental health training of law enforcement and corrections officers.
BEHAVIORAL HEALTH AWARENESS FOR CHILDREN AND TEENS What the investigation found: Despite increased medical and scientific research into the nature and source of serious mental illness, a mental illness stigma persists. What the legislation does: The Department of Education, working with mental health stakeholders, will undertake a national campaign aimed at reducing the stigma of severe mental illness in schools. The bill also reauthorizes the Garrett Lee Smith suicide prevention program. INTEGRATES PRIMARY AND BEHAVIORAL CARE What the investigation found: Low-income individuals with serious mental illness and addiction disorders have high incidences of cancer, heart disease, diabetes and asthma. Untreated depression increases the risk of chronic diseases, and can double the cost of healthcare for health disease and diabetes. Integrating mental healthcare providers into electronic medical records systems will result in better coordinated care for patients as well as cost savings. What the legislation does: Extends the health information technology incentive program to mental health providers so they can communicate and work with primary care clinicians. INCREASES PHYSICIAN VOLUNTEERISM What the investigation found: Health centers and mental health clinics are experiencing a staff shortage. Clinicians and healthcare professionals can volunteer at federal free clinics, but federal legal barriers and the high cost of medical malpractice insurance prevent them from doing so at community health centers and mental health clinics. What the legislation does: Eliminates federal legal barriers under the Federal Tort Claims Act preventing physician volunteerism at community mental health clinics and federally-qualified health centers. REFORMS THE SUBSTANCE ABUSE & MENTAL HEALTH SERVICES ADMINISTRATION What the investigation found: Unauthorized in the last decade, the Substance Abuse and Mental Health Services Administration has lacked mission focus. Grant programs are not evidence-based or guided by the best available medical science. What the legislation does: Emphasizes evidence-based treatments, sunsets unauthorized programs, and strengthens congressional oversight of all federal behavioral health grants.
The power of two
Your partner can become a pillar of strength when you work together as a couple By Barbara Boughton, BP Spring 2013 There’s no doubt that the nature of your relationship with a “significant other” has a major effect on managing bipolar. Research now shows that having a supportive partner may be just as important as medication and psychotherapy in preventing relapse, according to Sagar Parikh, MD, a professor of psychiatry at the University of Toronto. Likewise, the stress of high-conflict relationships or the emotions that accompany breakup and divorce can sometimes exacerbate symptoms of the disorder, Parikh says. So what can you do to make your partner an ally in recovery? The first step, says Parikh, is education—for both of you. The more that both partners know about symptoms, treatments, and coping strategies, the more they can work together to address common challenges. Reading and online research, workshops presented by mental health organizations, discussions with mental health practitioners, and peer support groups are all good ways to get informed. A partner or spouse who is up to speed on what it takes to live with bipolar will find it easier to understand when you ask for support. The next step is learning to discuss matters relating to your illness openly and honestly. For one thing, being able to share what’s going on in your life and your head provides your partner with a context for any irritability, sadness or high spirits you exhibit. For another, it gives you both a touchstone for recognizing early signs of a mood shift. Elizabeth and her husband, Rory, who have been married since August 2012, have a conversation at least once a week about any symptoms Elizabeth might be experiencing. “Regular communication is really important,” says Elizabeth, 32, of British Columbia. “We talk about what I’m feeling and things that he notices about me. Sometimes, it’s hard for me to see the forest for the trees, especially if I’m not feeling well.” Rory’s feedback provides her with a reality check, Elizabeth says. “Last year I had a manic episode and Rory realized something was wrong when I told him: ‘I want to go on a 5K run.’ I’m a pretty sedentary person, so for me that’s out of character. It gave Rory a clue that I might be experiencing mania,” she recalls. In most intimate relationships, it’s important to make significant others aware of red flags, according to David Miklowitz, PhD, a professor of psychiatry and director of the Child and Adolescent Mood Disorders Program at the Semel Institute for Neuroscience and Human Behavior at the University of California–Los Angeles. “People with bipolar disorder can make a list of symptoms and behaviors that they know indicate early signs of a manic or depressive episode. The partners can then refer back to these lists in order to spot early symptoms,” Miklowitz says. comfort levelWith education and experience, partners often become adept at spotting subtle signs, Miklowitz notes—sometimes before the person with bipolar does. “Then the question becomes: If your partner spots early signs of mania or depression, what do you want them to do with that information?” Miklowitz says. “Do you want them to call your doctor? Do you want them to go in with you for a therapy session, or encourage you to take your medicines? Some people like that kind of active support from their partners, and some do not.” In some cases, Miklowitz says, intervention from a spouse can be seen as “too parental or too controlling.” The bottom line is this: In order to tell your partner how to be helpful, you first need to know what kind of help you want. That’s highly individual, so every couple will find a different fit. After a disturbing interaction with a friend or boss, one person may simply want to vent while another seeks advice on how to resolve the situation. Bill, 67, has never looked for a lot of hands-on involvement from his wife, Telle. The couple lives in California, and has been married for 20 years. “The main way that Telle has supported me is through her acceptance of me—and that’s been very important to me and our relationship. She knows that I can stand on my own two feet, and she doesn’t judge me,” says Bill, a retired refrigeration pipe fitter. What Bill appreciates are Telle’s understanding and compassion for his symptoms, her trust that he is working to get the best treatment he can, and her emotional support when he’s had to be hospitalized. Still, Telle has occasionally taken an active role in Bill’s care. In May 2012, Bill became delusional while being assessed at a hospital for a blood clot in his lung. Telle spoke to his psychiatrist, who arranged for Bill to be admitted for psychiatric intervention. If your partner does take an active role, Miklowitz says, it’s important to understand that the person will probably make mistakes. “It’s crucial to give your partner some leeway, especially in the beginning of a relationship, when they’re just getting to know you and the effects of your illness. They’re not trying to control you. They’re just trying to help, and they don’t always know how to best do that,” he says. talking pointsOnce you are clear in your own mind about what role you’d like your partner to take, Miklowitz notes, it’s crucial to be direct in expressing your wishes—and also to listen to what your partner has to say. Miklowitz recommends asking “clarifying questions” to make sure you understand your partner’s point of view. To doublecheck that you’re interpreting correctly, practice repeating back what the other person said—a technique known as reflective listening or mirroring. Nancy Poirier, MPs, a clinical psychologist at the Douglas University Institute for Mental Health in Montreal, stresses the need to express your wants and feelings with compassion. With mirroring, for example, first reflect your partner’s viewpoint, then express understanding and empathy to validate how the other person feels. In addition, she says, “both partners should be careful to use ‘I statements’ rather than blaming the other person in talking about the bipolar disorder. The important thing is for both partners to feel understood.” As far as practical approaches, Poirier recommends developing a relapse prevention plan that details early warning signs of a mood shift and how to respond. The Elizabeth and Rory’s plan includes a list of people whom Rory should call to get Elizabeth treatment and/or medication, as well as the name and contact information for the hospital where she’d like to be treated. As a further step, Poirier notes, you and your partner can write a contract about what each of you will do when warning signs appear. A document you signed when well may be more effective against denial when you’re ill than a partner’s reminders. There are other small but helpful ways partners can counter symptoms, she says. During a manic phase, reduce stimulation by decreasing light and loud music in the household, and keep credit and cash cards inaccessible. During a depressive phase, let more light into the house, encourage exercise, and gently urge completion of at least one pleasant activity each day. On a day-to-day basis, agree on a system that keeps encouragement from feeling like nagging. Again, this will vary from couple to couple. Some might be comfortable with a daily check-in about medication compliance, for example, while others will prefer a more emotionally neutral chart system that both partners can refer to. Couple’s therapy can be an effective way to develop strategies for coping with the disorder together, Miklowitz says. “The counseling should help the couple solve problems that arise around the symptoms of bipolar disorder, and learn to communicate effectively about them,” he says. In addressing specific issues, Miklowitz adds, it helps to realize that you may not get everything you want. “You have to be willing to compromise,” he says. “You have to start with the assumption that everyone—you and your partner—are doing their best.” “Doing your best” might involve taking as much responsibility as you can for your recovery and well-being, Poirier points out. For your partner, that might mean cutting you a little slack for symptomatic behavior. Elizabeth says that when she succumbs to what she calls her “ooh, shiny!” syndrome, Rory usually accepts the impulsive action as part of her illness. When she bought several hundred dollars’ worth of tea towels, she recalls, Rory commented that they were now stocked up for a few years. When she took their cat to the vet and came home with an extra kitten, Rory “accepted the kitten with open arms,” she reports—and they now have a rule that they only go to the vet’s together. “He isn’t a pushover,” she says, “he just knows that in the spring, I pull a few whoppers and that is OK.” In fact, she says, Rory took the news of her diagnosis better than she did. They were dating at the time, Elizabeth says, and Rory made it a point to find books that would be helpful. “He never judged me for having bipolar,” she adds. “I’m very lucky to have found Rory.” ------- Barbara Boughton, a freelance health and medical writer, writes for Reader’s Digest, Medscape.com and other outlets. She lives in the San Francisco Bay area. Learning when a hug can helpWhen Heather and Ken first met in fall 2002, Heather certainly wasn’t in the mood for romance. She was experiencing serious depression and “very resistant to dating,” but Ken waited patiently. “When we did start dating, I was very forthright about having bipolar disorder, and he was very understanding,” recalls Heather, 44. Now Heather’s relationship with her husband is a rock that steadies her when symptoms crop up. In Heather’s case, that’s often behaviors that signal depression—not getting out of bed, failing to eat healthy foods, and crying a lot. After nine years of marriage, Ken has come to understand what his wife needs when she is ill. And Heather made it a priority to communicate to her husband about what kind of support she finds the most helpful. “Sometimes it’s just the simple things that are important,” Heather says. “A hug from Ken can be very grounding when I’m having a difficult time. He also knows when to give me space, such as when I get irritable, angry, and when I lash out.” Perhaps more importantly, Ken and Heather have an agreement that they’ll promptly address any worrisome symptoms. Heather admits she’s not always receptive when Ken spots signs of depression or hypomania, such as being quick to anger or spending too much on online shopping, yet she will usually agree to call her doctor. “Couples therapy has also helped us,” she says. “We’ve learned not to blame each other when we discuss sensitive issues such as my bipolar disorder, and to respectively express our feelings. Sometimes that may mean taking a break or even going to different rooms when a discussion becomes too heated.” She adds, “What has been most important is for both of us to realize that I’m more than the identified patient in our relationship. I’m Heather, a wife who is more than her illness, and who needs and wants hope and love from her partner.” In sickness and in healthDan and Dolores have weathered 43 years of marriage—and Dan’s bipolar swings. Dan, now 73, was accurately diagnosed in his late 20s. He and Dolores were contemplating marriage, and she accepted the news along with the man. “He was a real charmer and had a wonderful sense of humor,” Dolores remembers. Dan was in a stable period when they met, but shortly after the wedding he slipped into depression. For the next decade, he cycled from months of mania marked by reckless spending and anger, to months of immobilizing depression, to stretches of stability that might last half a year. He went through a series of jobs, never keeping one for long. “I was ill and non-productive and she was the provider and caretaker,” Dan says. Dolores held down several part-time jobs, taking their two children to work with her because they couldn’t afford child care. The couple went through two bankruptcies. “It was painful and it was devastating, but I didn’t leave because I don’t believe in divorce,” says Dolores, 75. “But even in the most difficult moments, Dan’s sense of humor would come shining through.” They held on until Dan found the treatment he needed at Washington University. An equally important turning point was their decision to start a peer support group in 1980, which became one of the founding chapters of what is now the national Depression and Bipolar Support Alliance (DBSA). The work not only helped his wife become more educated about the disorder, Dan says, but through running meetings “she gained many skills in talking with me in a very helpful and therapeutic way.” “We learned how to communicate even around tough topics—and not blame the other person,” Dolores adds. Dolores admits to “mixed feelings” about their marriage over the years, but says that their life improved as their ability to address Dan’s health got better. “He has changed in a really positive way over the years,” she says. “And our communication strategies just got better and better. We feel so blessed now.” Another definition of partnerPeople who are single may find a family member who becomes a partner in recovery. For Jackie that’s her dad, Larry. “We’ve become an amazing team at managing my bipolar I,” explains the 25-year-old. “We even have a special binder that we keep on the coffee table that has copies of the most important papers about my illness and how we should handle things.” The binder includes a list of her medications and what they’re for, contact information for her doctors, steps to take in various crisis situations, even copies of some of her homework from psychotherapy. Jackie has found the skills she’s learning in dialectical behavior therapy especially helpful in managing her symptoms. When she comes home from group, she shares new information with her father. Also really helpful, she says, is “both of us reading everything we can get our hands on about bipolar. We test out new techniques for managing things to see what works best for us.” For example, Jackie now keeps track of when (or whether) she’s taken her medications on a dry-erase board that hangs on the fridge. The chart not only reminds her to take the meds, but also keeps her father in the loop without having to bug her. Jackie, who was diagnosed at 14, has seen a huge change since her father started educating himself. When she’s in a mood shift, they’re able to talk through what may have triggered it and how to get her back in balance. When her dad learned that people with mental illnesses sometimes use cigarettes to cope with stress, he stopped insisting she quit smoking. Instead, he encourages her to cut back. “Before he started reading he didn’t understand nearly as well as he does now, which really goes without saying,” she reflects. “We fought a lot more and he really didn’t ‘get’ me. Now we fight less and he’s much more compassionate to what I’m enduring.” READ MOREBuy a copy of the SPRING 2013 issue. Have a PRINT edition mailed to you OR read the full issue NOW by purchasing the DIGITAL edition. Subscribe to bp Magazine (Print and Digital Subscriptions available.)
Greetings, everyone. This April training course in Milwaukee is open to Veterans not currently employed in VA peer support positions who are interested in qualifying for such employment. To access the application, either click on the link below, or see the attached document. Please note the March 25, 2014 application deadline, and thank you in advance for circulating this to interested Veterans as appropriate.
Application link: http://www.dbsalliance.org/site/Survey?ACTION_REQUIRED=URI_ACTION_USER_REQUESTS&SURVEY_ID=8300 Best, Lisa Goodale Lisa C. Goodale, MSW, LSW Vice President, Peer Support Services Depression and Bipolar Support Alliance / DBSA or Fax: www.DBSAlliance.org Veteran peer specialist training: www.DBSAlliance.org/Veterans Join Us in the Fight to Save Access to Mental Health Treatment: Act Now by Telling Congress You Care!Posted on January 28, 2014
The Centers for Medicare and Medicaid Services (CMS) wants to significantly limit access to antidepressant and immunosupressant medication for people subscribing to Medicare Part D. Read today’s post to learn why you should be concerned, and what you can do to support the mental health community by raising our voices in Washington. Earlier this month, the Centers for Medicare and Medicaid Services (CMS) announced a proposed rule that would remove antidepressants and immunosupressants from the protected class status under Medicare Part D and is considering removing antipsychotics from the same status the following year. If CMS adopts its proposal, it would reduce patient access to and the availability of mental health treatment. Since it went into effect in 2006, Medicare Part D’s protected class structure ensures patients with mental health conditions have access to all or substantially all of the most appropriate medications, protecting them from “fail-first”1 experiences or other appeals processes. In many cases, delays caused by these processes can result in inadequate treatment and potentially tragic outcomes. We need to ensure that all mental health patients have access to all the medications that they need. It is clear that CMS’ rule will signal a step in the wrong direction and the consequences will be detrimental. According to the World Health Organization, depression is currently the leading cause of disability worldwide. By 2030, it will be the leading global burden of disease.2 In the United States alone, the total direct and indirect cost associated with depression exceeds $83 billion annually.3 Ultimately if CMS’ rule is approved, there will be severe human, economic and societal consequences for not only mental health patients, but for all Americans. We must take action now. Here’s How You Can Take Action Today Now, more than ever, the mental health community of patients, families, friends and others need to join together to tell CMS and the Administration how big of a mistake implementing this rule will be for all Americans. Below you’ll find several ways in which you can make your voice heard during CMS’ open comment period, ending March 7,to protect antidepressants, immunosupressants and antipsychotics within Medicare Part D. The clock is ticking!
At Care For Your Mind, we understand that your personal experience and ideas can help build a mental health care system that works. 1 Fail first refers to the practice of forcing doctors to prescribe the least costly drug in any class to patients first, even if the physician wants to begin treatment with a different medication. 2 World Health Organization. http://www.who.int/mediacentre/factsheets/fs369/en/ 3 Greenberg, et al.(2003).The economic burden of depression in the United States: How did it change between 1990 and 2000? Journal of Clinical Psychiatry, 64, pp. 1465-1475 |
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