Special Report: Psych Respite Run By Staff Who’ve ‘Been There’

Locked away in a psychiatric ward, he felt trapped, helpless. Isolated from his loved ones and worthless to society. He was terrified of the injections forced on him. More than anything, he wished someone helping him could have said, “I’ve been there. I know what it’s like.”

It was forty years ago that Dr. Daniel Fisher, then a neuroscience researcher with a doctorate in biochemistry, was confined three times to the hospital, during tumultuous psychiatric crises that sank him into psychosis and catatonia. As he slowly recovered, he recalls, “All I could think of was, ‘I’m going to become a psychiatrist and create alternatives to psychiatric hospitals.’”

He did become a psychiatrist. And now, Massachusetts is on the verge of creating a new institution that fulfills many of his long-ago wishes, and aims to correct many of the problems with psychiatric hospitals that he encountered.

It is called a “peer-run respite” — peer-run because the staff will be “peers” with their own personal experience of mental illness, and  respite because it is meant for short-term retreats where people can rest and recover without entering a locked facility.

The state Department of Mental Health plans to issue a request for proposals next month for the state’s first peer respite, to be set up in central or Western Massachusetts, said Marcia Fowler, deputy commissioner for mental health services.

The contract would begin as of this coming July 1, she said, and despite the state’s budget problems, the plan is going “full-steam ahead” and “we’re completely committed to it.”

The respite will have no more than six bedrooms, and is budgeted for roughly $400,000, about the same as other state respite facilities. Many of the specifics will be up to the groups that submit proposals, Ms. Fowler said, but all the staff members in contact with clients should have personal experience of mental illness.

If the idea strikes you as radical, consider the many millions of Americans who get help from 12-step programs. Just as a current alcoholic leans on a sponsor who is a “recovering alcoholic,” the thinking goes, patients in current psychiatric crises can lean on people who have emerged from them.

That concept is a central tenet of the national “recovery movement” in mental health, a sweeping shift toward greater optimism that people with serious mental illness can improve or recover, and toward giving them more control over the help they get. People need not be passive patients, the thinking goes; they can help themselves and as they get better, they can help others.

The recovery movement has gained acceptance at the federal level, including the landmark “President’s New Freedom Commission on Mental Health” appointed by President George Bush. The commission envisioned recovery as possible for everyone, saying, “For some individuals, recovery is the ability to live a fulfilling and productive life despite a disability. For others, recovery implies the reduction or complete remission of symptoms.”

Dr. Fisher served on the New Freedom panel, he now advises the Obama administration, and he heads one of the recovery movement’s leading bodies, The National Empowerment Center in Lawrence. And for the last couple of years, he has been a Groundhog.

The Groundhogs

Beginning in early 2009, a group of activists — every one of them with personal experience of mental health treatment — began to gather at Dr. Fisher’s antique Cambridge house every month or so to push forward the idea of creating peer-run respites in Massachusetts. It was not a wildly radical idea — a handful of states already had them — but it was not business as usual either.

Some of the "Groundhogs" in Dr. Fisher's living room

The Groundhogs — so named because they formed around Groundhog’s Day, 2009 — gathered information, strategized and built support. On a personal note: they welcomed me to sit in on Groundhogs meetings as a reporter. My overwhelming impression was: This is a group of extremely smart, kind, funny people who happen to have met with major mental illness and been galvanized by it to try to make the system better.

One of the group’s leaders, Cathy Levin, told me: “It’s important to us that our suffering was not for nothing. It’s important to say that we’ve grown deep, healed and become stronger. Now we have our strength to offer others.”

The Groundhogs’ idea gained a warm reception from the state Department of Mental Health, which strongly supports the concept of employing “peer specialists” –people who have experience with mental illness and have been trained to help others.

When the department re-procured almost its entire community mental health system last year, it mandated in its contracts that agencies employ some peer specialists.

“Not only are we doing it philosophically in Massachusetts, but we’re doing it with teeth as well,” Ms. Fowler said. One recovery movement slogan is “Nothing about us without us,” she said, and “we completely sign on to that.”

The only opposition to peer respites that the department has encountered has come from traditional mental health providers, she said, who see peer respites as “cutting into their business.” But while the traditional providers offer great services, she said, they simply do not fit the model: they are not peer-staffed and peer-led.

The "Peer Support and Wellness Center" in Decatur, Ga

So what does an alternative to psychiatric hospitalization look like when it is run by “people who’ve been there?”

Cathy Levin, who is coordinator of special projects at the National Empowerment Center, sketched it out. I’ve distilled her description into two scenarios: the usual way and the peer respite way.

The usual way:
You feel yourself plummeting into an emotional crisis. Chances are, you call 911 or go to the emergency room. You wait hours. You tell your story repeatedly to one staffer after another: “I need someone to talk to. I feel like hurting myself.” You’re in a johnny, watched by a security guard. The staffers do a “psych eval” to see if you should be admitted to the hospital, and a doctor — probably a young resident — is deciding your fate. You’re asked if you want to hurt yourself or others. If you want to go into the hospital, you know to say yes.

“If there were alternatives, where the staff could be sure people would be safe and cared for, they would not put people in hospitals as much,” Ms. Levin noted. “There are not enough in-between areas, between full hospitalization and discharging someone onto the street. and the peer-run respite serves that function beautifully.

Back to your crisis. You’re put in a hospital — possibly a distant one, if a bed can be found — and medicated heavily. You spend a week adjusting to the new medications, then your insurance runs out and you’re discharged. You struggle to pick up the pieces of your life.

The peer respite way:
You feel yourself plummeting, and you call a “warm-line” that triages people in crisis. A peer counselor decides you’re a good candidate for the peer-run respite. (For at least the first year, the Department of Mental Health will control referrals to the peer-run respite, Ms. Fowler said.)

You walk in the door of a little house, and get a tour. If you want to spend a couple of days sleeping, you can; sleep seems to help people through crises, but hospitals tend to require patients to adhere to a strict “program” that includes group therapy and other activities. You have communal meals. The doors are not locked; you can leave to see your psychiatrist or therapist or loved ones. You can even still keep working if you have a job. The staff doesn’t tell you what to do. They just talk with you. They’re just there with you.

So many questions arise: Is this safe? How do peer staffers take care of their own mental health while serving others? And more. Rather than run on further at this point, I suggest this: Write in your questions or thoughts as comments at the bottom of this post, and if you like, address them to Marcia Fowler, Daniel Fisher or Cathy Levin. We’ll pass them all on, and post again soon with their answers — or they can post their replies directly.

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  • Walter

    I believe this alternative will attract many, and worry that such a facility will be inundated with seekers.

  • marymps

    This has long been needed! Many years ago I experienced what I would now call a spiritual emergency, but at the time I was terrified that I was mentally ill. I tried to go to a psychiatrist, but I found that all he had to offer was drugs and a ticket to a mental hospital. So I went back home and toughed it out, feeling like a criminal for avoiding treatment but at the same time knowing a mental hospital would destroy hope of a normal life for me, my husband and our children. The very worst part of the experience was having to go through it alone, with no help from anybody who would know what I was going through. I endured months of anguished self-doubt before regaining my balance. I desperately needed a respite center like the ones under discussion here for reassurance that I could recover. The whole experience left me with a deep-seated disgust and contempt for professionals who are trained, paid and trusted to help people undergoing profound transformations, but who in actuality have no idea of the damage they cause. They disgrace the honorable traditions of medicine.

  • PriorityOne

    Amazing idea! Can’t believe I stumbled on this while looking for a way to help others! I personally avoided the locked ward (my brother did not), but still there is so much confusion out there it is no wonder so many are desperate. Fortunately I sought therapy before medications for my own depression and it made all the difference. I felt compelled to write a book on my experience and have a website subtitled “Help from Someone Who’s Been There”. For more info and a free report check out http://www.theANXIETYandDEPRESSIONblog.com

  • Djh512

    Does Pennsylvania have any peer run respite houses ? How can I find out about employment in a peer run respite house ? djh512@verizon.net

  • Bea

    Maybe I would have not suffered so long if only I would have had someone who understood the pain I was in during my severe clinical depression . This is an amazing idea and an amazing decision made while in the midst of his own crisis. Brilliant!

  • sunflower

    this story is so inspiring.

  • Russell Fig

    This idea should be tried everwhere. It is good to have people who have gone through the experience of mental illness serve as role models for others who are going through the experience.

  • Rooktoknight

    Thats a great idea which i hope will be more influencial. I met Dr. Fisher when I showed him “The meeting Place”, in San Diego, California. I have survived many things that stigma has had an overwhelming effect on. I hope your work continues.
    Paul Lare, Director of Development Research, San Diego, California. rooktoknight@hotmail.com

  • Indiadawn

    Dear Marcia, Daniel, Cathy and anyone that truly understands the pains of mental health.

    My sister was diagnosed with Paranoid Schizo-Effective Disorder in 2003. She was in and out of short- term crisis centers and then spent four months in a state hospital. It was hard to “sign her life away” by advocating that she be put under the care of a state hospital. We live in Florida, a state which has strict laws that protect the patient but also leave the family in the dark. The state hospital allowed my sister to stabalize and realize she was sick (she realized her delusions were the same as others). However, it added to her stress level and also hindered her recovery. Even after three years of living a productive life without a relapse, she says that she never wants to go to another hospital again. She is scared to be under the treatment of doctors she doesn’t know. The doctors in each new facility won’t talk to the doctor she sees regularly. As part of her delusion, she feels she is pregnant (although the tests show she is not) and she is afraid of trying new medicine. The problem however, is that my sister does not realize she is sick (she has anogosnoia).

    My burning question, is what do you do for someone who does not realize they are sick and won’t seek treatment or stay in a facility voluntarily?

  • Rose Garman

    I am currently studying for my MS in mental health counseling, 4.0, Chi Sigma Iota. My undergrad is in radio/TV/Film and Journalism, magna cum laude. I was first diagnosed bipolar 1 with psychotic features in 2002, comorbid with alcoholism. I have been living in full-sustained remission from both conditions for over three years now with no medication and have been advocating for this type of advancement and progress since my first misdiagnosis. I am greatly interested in being a part of this process in/for the state of Illinois.

    Please feel free to contact me at your convenience.

    Regards,

    Rose Garman, Director/Spiritual Mentor
    AHHA
    Springfield, IL
    USA
    217-494-7000
    rahja1111@yahoo.com

  • http://www.awakeningsproject.org Irene O’Neill

    I would love to be a part of bringing such an establishment to Illinois. I currently work for a county health department and although we have a crisis/respite unit, we do not have even one recovering peer working there. I have suggested it, and hope they would at least start with one “Consumer Recovery Specialist” there. But having such a space completely run by peers would be even more advantageous for people using the facility. I co-direct an all peer run art project called The Awakenings Project, and I believe self-help art should be a big part. Check us out at http://www.awakeningsproject.org. Thanks

  • Mslusinski

    This is wonderful! I completely agree that there are only extremes in the world of mental health and no gray areas. This is helpful for those that may have a “slight” relapse and don’t require a full hospitalization, but just need somewhere to go. Good luck!

  • Ferrerdaly

    I’m attempting to become a psychiatrist. I graduated from a foreign med school and I’m planning to take the USMLE next year. I have schizophrenia and the medication (Clozapine) overly sedates me. Are there accommodations for this during internships and residencies?

  • Hdt

    I believe peer respite are not in the best interest of people suffering from a mental illness. I personally would not go to one if I need treatment because I would be afraid that I would run into someone I knew . I also feel that this would be very stressful for the people working there. I think Ms Levin and Dr Fisher have not thought through all the problems this could cause. I hope that they do not get the funding that they are asking for

    • Daniefisher

      Hdt, This peer-run respite model is not for everyone. But it does provide a choice for persons in distress who want to be helped by peers who have been through a similar experience and want a place founded on the values of recovery and wellness. Presently, in Mass., there is no peer-run crisis respite alternative. There are, and will continue to be, however, psychiatric hospitals. As far as stress on the staff, it is true, but the existing respites have found ways to help their staff through the stress.

    • Betsy

      Dude. You make it sound so personal. A respectful discussion of the subject seems more reasonable.

  • Jon D

    Congrats to all on such a noble effort. My work advocating for basic human rights in inpatient psych facilities has shown me what an appalling crisis there is. We plan to expose, in a more public fashion, the extent of abuses at hospitals, but the peer-run respite idea illustrates everything that psych hospitalization is not – it’s a doorway to a far more humanistic way of looking at conditions that are so often met with scorn and utter contempt. It’s our civil rights movement.

  • duke of url

    This article and the service it highlights brings up mixed feelings in me. But in a good way.
    I have worked in the mental health field for over 35 years, with a career that has spanned from volunteering on a hot-line in the first years after de-institutionalization to this age of managed behavioral health care and consumer empowerment. I have worked with and supervised people who have identified themselves as consumers and, of course, those who have not. I have hired and fired staff whose prime motivation was compassion and others who needed control over others.
    What I have seen and come to believe is this: clinical wherewithal without compassion is obviously heartless, and compassion without clinical wherewithal can be confusing and all too often dangerous.
    The healing effect of being truly present to another human being, of beholding him/her without judgement is something simply works IF that other person is able to allow it to in his/her time of need. The truth is that not everyone can.
    Frankly, it frightens me to think that some people believe that compassion, informed by life experience, is all it will take to make programs as the one featured such a success.
    I believe what is needed is a balance of compassion tempered by clinical acumen and clinical acumen humbled and warmed by compassion. Is such a delicate balance possible? Of course it is.
    Best of luck to the Groundhogs in blazing the trail to show us how it can be done warmly, safely and responsibly!

    • Daniel Fisher

      Duke, I agree that a balance of compassion and acumen is needed. We plan to have an in depth training for all staff in intentional peer support as well as specific tools, such as emotionalCPR (eCPR), for assisting persons through their crisis. eCPR involves a 3 day training to learn a set of skills in connecting, empowering, and revitalizing a person in emotional distress which a group of 20 peers have been developing and teaching over the last 2 years. We want to make it the subject of another one of these blogs. In addition we plan ongoing learning through consultations.

    • Camille

      Very well stated! Thank you for your words of wisdom & years of experience.

  • Cathy A Levin

    One of the ideas behind the peer respites is the doors aren’t locked. Guests can stay in touch with their regular therapy and doctor appointments. This is a big benefits. Often, professionals don’t want to hospitalize their patients but they want to be sure the person is in a safe place after leaving their office. When their patients are guests in the peer respite, the clinicians do not have to worry about the person.

    Then, the person can continue to see their treaters while they are in distress. This is different because people usually cannot keep their regular appointments while in the hospital. One loses touch with them. When outside clinicians can the hospital often they are excluded from treatment information. Their input is not appreciated.After the person is discharged, the outside clinicians help pick up the pieces.

    In contrast, seeing your clinicians while you are in distress offers a tremendous opportunity to grow. One gets at the root causes of distres through the crisis. Everybody involved can grow—the person as well as their treaters.

    The personal bonding that can take place is worth years of treatment under ordinary circumstances.

    • Camille

      This is an excellent point; the fact that we lose ‘continuity of care’ when crises arise if a hospitalization is required often creates much more unnecessary stress and confusion to a person who is already experiencing added stress and confusion due to their illness alone. With a respite and the continuation of being treated by a professional you have been seeing for months, and often years, you can keep at least SOME stability in your life while being in a safe living place amongst people who are caring and who can empathize with what you are going through. You needn’t be alone while being ill, a fact that often leads many to suicide in severe depression. Yet, the door is open and you are not ‘caged in’, something I have always found to be inhumane and cruel.

  • grateful

    WAY TO GO!!! Fifteen years ago my beautiful 20 year old daughter was diagnosed with a mental illness and hospitalized. She spent her 21st birthday drugged and inchoherent in a locked unit. When she was released (insurance ran out) she came home and threw her meds away. I was frantic because “the doctors know best.” She taught me that SHE knew best. She graduated from nursing school as an RN a few years later and is a head nurse in a pediatric psych unit in one of the most prestigious hospitals in the country. Had there been a “peer” program for her during her difficulties, the WHOLE FAMILY would have benefitted. Thank you for your brave work!!!

  • http://www.stigmanet.org Jean

    Psychiatric survivors who’ve “been there” and gotten better can move on if they choose to. Kudos to the Groundhogs for using their unique experience and empathy to assist others reach their goals. This project has great potential!

  • Teresa

    What an amazing and very simple idea. I have Major Depressive Disorder and have ALOT of expreience in er’s and psych hospitals over the past 4 years. I would say the most distressing part of the whole process is the way that you are treated by some hospital staff. There have been very understanding, kind people I have encountered. But, some staff, not even meaning it, leave you feeling worse about yourself, in your terribly vulnerable state. What a nice idea, to be in a place where the staff truly understood you and did not judge you. Wow, what a wonderful idea!

  • alaskanwalela

    As a peer, it is incredibly exciting to see this happening. I am blessed to have an amazing family/friends support network who have looked after me so that I have only had to be hospitalized once for a short time.
    Far too many folks just don’t have that and are stuck with the traditional medical option, not a great option!! Thank you, Groundhogs and Dr Fischer for what you are doing to change all that!

  • Dwdundas

    This is a breath of fresh air and a welcome change in MA and around the country for all of those in emotional distress. Hopefully, the days of immediate lock-up for long periods of time in abusive psychiatric hospitals will be disappearing and social change in the way “mental illness” is viewed will follow. People will see that recovery is possible, just as it is from so many other forms of illness. There has for so long been discrimination, and as these respite houses become part of the community people will see that ultimately we are all human, with our individual differences, to be accepted, honored and respected. Thank you to all of you who have worked so hard and for so many years to bring respites to MA and to bring a more compassionate kind of care to our fellow travelers through life.

  • Russellfig

    Good work Dan. It must have been an uphill battle to when tryingh to bring this about when you probly had to confriont alot of people who stigmstitise mental illness and think that the mentally ill shoud be loced away in a Psychiatric ward. these are just pain ignorant peolle who soudn;t be allowed to have any decisin on what the mentaly ill recieve. My first job out of college years ago I worked in a half way hous for the mentaly ill in Worcheerster called Maple Hall I don;t know if it still exists. From what I coud see they were only interested in earhousing the residents and not helping them. All they wanted from the residents is that they folow the rules and pay their rent. I spoke to the clits in the short time I worked there and heard their stories. I remember one woma telling me how she used to be asecreatary and she told me how being hospitalised in a Psychiatric hosptal broke her. She told me that they offered her a jov in the house at a salary that was below the minum wage. How is that going to help a person recover and become a productive member of society. The whole system needs to be revamped and the whole weel needs to be reinvented. Good work dan keep it up.

  • Russell Fig

    I think this is a good idea and long overdue. It is good to hire Peer Specilsts to work in these postions .Having been through the problems they can identify with what their clients are going through. I hope Massachusetts and other states well continue to add Reer Run Respite programs.

  • Laysha

    The article says that there is a plan for 1 peer run respite in MA in the near future. What are the plans by Groundhogs and DMH to expand this service if it is successful, make it sustainable, and embed it in the service system? It seems like buy-in from “traditional” providers will be essential. What do providers in MA think of this other than feeling it “cuts into their business”? Another issue is that with health care reform, we may see less block grant and state dollars in a public mental health system, and more people covered by Medicaid. Are consumer groups working with Medicaid to make peer run respites a covered service? This would involve accommodating some medical necessity criteria, which is hard with a non-medical approach. Do you think that partnering in some way with traditional providers would help that problem? Sorry to go on – my basic question is how is this sustainable in the current and future system?

    • Daniel Fisher

      Your question about sustainability is important. So far the existing 8 peer-run respites have all been sustained, with Stepping Stones in NH, at 15 years the longest, on a combination of county, state, and federal block grant dollars. I do not think the principles of wellness-based peer support, self-determination, holistic health, and community integration, upon which these respites are based could be maintained under present day Medicaid requirements. If we are able to reform Medicaid such that it would reimburse for recovery-oriented, wellness-based services that result in community integration then it might be a good income source.
      As for the relationship with traditional providers: I and the ground hogs are clear that we want these respites to be both peer operated and peer-run. By peer-run we mean that peers occupy the most important positions in administration and the board of directors. In Massachusetts the best candidates for such peer-run organizations are the 6 Recovery Learning Communities. The ground hogs would like to see at least 6 peer-run respites in Mass. We will continue to advocate for 5 more after the first is piloted.

  • Dave

    Peer Ran Respite is a wonderful concept that will not only support those who come there, but also never underestimate the power of supporting someone through recovery from mental illness. As a consumer myself I have experienced firsthand how being in the helping role can enhance your own recovery journey. As a consumer and as a advocate I have spent a lot of time in the “traditional” medically driven system and wondered why it isn’t more recovery oriented. It isn’t difficult, and as I would say “it aint rocket science”.

  • Andy Epstein

    Thanks for this inpirational piece on peer staffers and the hopeful message it brings. I’ve long been upset by the treatment of folks with mental illness and the and inhumane “system” we have for helping people. I look forward to following this work. thanks, Andy

  • Victoria

    This is a very good Idea. I don’t think staffing is that much of a problem, you can hire staff to serve part-time. What states have this type of recovery set-up, it’s never mentioned.

  • Sally

    Where are you going to find people to staff the positions who are peers and who can work a 40 hour week without relapse? Wouldn’t the stress potentially overwhelm them? The respite doesn’t seem like it is going to be staffed adequately to enable support between the respite workers.

    • Daniel Fisher

      There are presently 8 peer-run respites (2 IN NY, NH, ME,GA,NE,OH,WV) in the US, one in New Zealand, and 2 just started in Holland. Each of these are fully staffed by mental health peers. Some work part time some full time. Peer support is a fundamental principle, so there is attention paid to the personal needs of staff. In addition, we are setting up an international association of peer-run respites to support and share knowledge among the respites. All the respites have been able to recruit, train, and retain staff. In addition, to the mutual support, the staff is inspired by the meaning it brings into their lives to help people through crises. It is not only a job, it is validation of their worth as contributing members of society, after feeling that role had been removed. by Dan Fisher

      • Tammy Heinz

        Great response Dan! This is an option for people that’s been a long time coming. Great work!

      • margaret

        Hi Daniel

        How can we get on board the international association of peer – run respite to share our knowlege ?

        Our organisation who focus on parents living with mental illness and the children have trained parents to become parent peer support workers. This is a first in Australia and we have just put a business plan into our mental health commision to fund our program. We are wanting to establish a respite alternatinve to hospital so parents do not have to reach breaking point before they get help. Great work you are doing.

        Cheers Margaret

        • Daniel Fisher

          what a great idea. A respite for parents with mental health challenges staffed by peer parents. Email me you contact information: d.fisher@power2u.org and I will connect you to the newly forming International Association of Peer-run Respites

    • alaskanwalela

      Sally- one of the key points in recovery is to monitor your own wellness. That is a skill we take very seriously. Having experienced the challenges of mental illness does not make us any more incapable of full time employment than dealing with any other chronic condition (such as diabetes).
      If anything, it makes more capable in working with those experiencing a crisis in their condition.
      Thanks for caring, though!

    • CathyA Levin

      This is not a “command-and-control” model. But it will be very satisfying to work in this environment for many of us. We are eager to give back. Unfortunately, there is usually a steep barrier of education credentials required.

      However, the training peers get in the peer respite model is as good or better than what clinicians get in school regarding crisis care. Young clinicians receive very little training in crisis management. Most of their education is around medication use.

      It takes experience for clinicians to gain these skills. Peers already have this experience. With additional training they prove very competent to help their peers get through distress.

      There are actually 12 existing peer respites in this country where the peer respite model is working: Three respites in New York state, three respites in West Virginia, and one each in New Hampshire, Maine, Ohio, Nebraska, Georgia and Alaska. There are other programs over seas. New peer respites being created even as we speak,

  • Mamonorg

    This is a fabulous idea. There are bits and pieces of this going on in the state in which I work but (to my knowledge) nothing like what you have discribed. I would like to hear more on outcomes.

    • Daniel Fisher

      Outcomes are very important. Please visit our National Empowerment Center website, http://www.power2u.org and click the tab on peer-run respites on the left side of the home page. You will see that the respites result in higher satisfaction, improved self esteem, and reduced hospitalization. They are less traumatic because they are voluntary and people can maintain and build their social network and continue with their treatment team.

      • Elika

        I think this is a well needed option in the community. One thing I think is important is to have mixture of peer support staff and traditional mental health workers such a social workers, psyciatrists ect..
        I do not think that peers alone are the answer, but are an excellent addition to other workers in that field.

        We need to keep our choices open. If one patient reacts well to medication that should be available.
        If accupuncture or some other treatment modality help a different patient that should be respected and welcomed also…..

        Compassion is the key. No one in a mental health crisis needs anything but tolerance, understanding and care.

        I wonder if respite centers will be confiscating peoples personal items such as cell phones and computers like other psychiatric facilities? And subjecting people to share a pay pho ne during
        group sessions. Or not aollowing them to bring in their service dogs or take walks for fresh air.

        The treatment at these hospitals has to stop making the patients feel like criminals. There sick for godsake, have some compassion. This is when they need their phone to reach out to friends or family. Need take a walk to get fresh air to incease their endorphins and lower their stress level.

        And if someone has a service dog the time to not allow them to have it is not during a crisis. This is when they need the dog most.

        And how about those hospital signs that mention you can have a health care advocate? Good luck getting one even if you have exemplary behavior. And what do you think would happen if you started to make a scene because you were not being given an advocate?

        Personally, in psych. hospitals some of the things I mentioned above I believe happen to make
        the situation easier for the staff. First consideration is not given to the comfort and care of the patients.

        And what about other types of patients? With phsyical ailments. Are they treated this way? I highly doubt it.
        Stigma needs to be removed even from the health care system. These poor souls are sick and need to be treated with tender loving care. They are scared of the unknown.

        As I heard a colleague say today, who decided they had the right to treat patients this way anyway?
        Who decided they have the right to take away someone’s personal items in the psych hospital.

        I hope respites will have a more open, compassionate policy and think of the patient’s comfort.
        Let’s remember they are ill patients and not criminals.

        Congratulations on the new respite -lots of hard work.

        • Daniel Fisher

          Elika, You raise important points. As far as professionals, people can and are encouraged to maintain contact during their stay in respite, with therapists and/or psychiatrists they have already formed a relationship with. I could also see a professional on staff though most of the respites have only peers. It just takes a lot more training to bring most professionals around to a peer support, trauma-informed, recovery-oriented philosophy of care. It is so rarely taught in professional schools. As for the phone policies, I certainly agree it is important to maintain contact with friends and family where they are supportive. I have not heard of any such restrictive policies with phones or visitors at respites. Again, the respite philosophy is that maintaining and building positive supports with people in the community is vital to recovery. As for service dogs, it might be hard to keep the dog at the respite, but visits to the dog or by the dog would be encouraged, as I know they mean a lot to people who use them.

          • Eliza

            Thank you for your answers. I think the training to bring professionals to the trauma-informed, recovery oriented philosophy is important. Peers still have their own personal struggles. Recovery is not a cure, but learning to live as well as one can in accepting an illness. That can not be forgotten.
            There is a place where I volunteer that has peer support groups to help each other deal with what is
            happening in the community.
            I believe it is unwise to have only peer supprs without any professional support. Peer supports should be just that a support or in addition to pofessionals. They can relate to patients and provide a role model. But peers are not professionally trained to replace social workers, psychologists, psychiatrist or mental health licensed counselors.
            Please give the service dogs another thought. There are psychiatric service dogs that have been shown to decrease patients medications. Dogs in general reduce all peoples blood pressure.
            These dogs undergoe specific training for 2 years. The new hospital in Worcester is going to allow them and therapy dogs.

            I can not understand why you would reject their staying at the respite? They are part of some patients treatment plan. I think that anything that reduces psychological symptoms even if it is alternative therapy should be acceptable.

            What about that 30% of patients that is treatment resistant? They most likely need VNS, vagus nerve stimulators, TMS, transcranial magnetic stimulation, ECT and perhaps a therapy dog.
            Wouldn’t it be a violation of the American Disabilities Act to deny their dog admission with them?
            Why do some mental health providers seem less supportive of this? Patients at regular hospitals do not have difficulty if they have a seeing eye dog.

            Have you been to the Psychiatric Service Dog Society at http://www.psychdogs.org. There are many great
            articles. There is even a listserv for clinicians. Maybe it would be beneficial for you to sign up to the listserv and see what some other providers are saying about psychiatric service dogs. Have you ever had a patient with a psychiatric service dog? Maybe it is time to be more open minded to this treatment modality? What can it hurt to check it out. Thanks for listening.

          • Cathy A Levin

            Elika–

            Service dogs are wonderful. I have a good friend with one. Dogs are soothing to sickness of the soul. Animals enrich the poverty of love that comes from being rejected by family and friends, when they burn out after years of one’s disability.

            Service dogs can give the love we need. Human connection is another way to heal. Although clinicians are helpful where medications are concerned, it is love that heals the soul.

            Many of us in treatment would agree, poverty of mental illness goes beyond job status to the very heart of feeling unlovable. Eventually, the person’s soul begins to die. Treatment can be as deadly as “the disease.”

            In contrast, connecting with a dog or a human being is lovely. Loving relationships, with my peers gives me a sense of worth. I feel needed. This is nourishing to the soul–the best way to recover.

          • Elika

            Thank you for your recognizing the value of animals to those in the mental health community. I want to mention to Daniel Fischer that there is an increase use of Psychiatric Service dogs with veterans and other members of the community. This year at the Alternatives Conference in CA there was a panel to discuss this topic and a workshop. The founder of the Psychiatric Service Dog Soceity, Joan Ensarya, PhD recently published an article about PSD’s in Psychiatric Times.
            It also just came to my attention that a person who was recently admitted to a psychiatric facility was denied the admission of her service dog. She has brought her case to the ACLU and they have agreed to represent her. I believe it is against the ADA to deny her dog to be admitted to the hospital with her. There may be a large fine assessed to the hospital. Stay tuned.
            I think the respite is a well needed addition to the services for those in crisis. If it can prevent hospitalizations all the better. Just mentioned the service dog issue because I want respites to succeed in MA, so would hate to see a fine happen here if a service dog was denied admission.
            Just good to keep up on this type of information and train staff to not violate others rights.
            Best wishes, I am sure to hear good things about this respite.

          • Daniel Fisher

            Elika and Cathy, You both make wonderful points about service animals. Actually for me a cat saved my life. I really could not think of any reason to go on living, but a stray cat had adopted me several weeks before. I heard it cry and realized that if I died no one would feed the cat. So I fed the cat and felt my life had purpose. Cat even had kittens soon after. So maybe service animals should be reconsidered as long as they are well trained and would not frighten other residents.

          • Elika

            I am so glad to read your latest comment Dr Fisher. As you mentioned, it would be good to consider the service dog issue before the respite opens. These days there are Psychiatric service dogs which can help a patient distinguish between a hallucination and reality, by monitoring the reaction of their service dog. It really is amazing the assistance these animals can provide. They can awake patients that are having nightmares.

            These animals do require advanced training which can take up to two years. There are program trained dogs and there are owner trained dogs that work with a trainer to train their dog.
            I would like to know the answer if it would be against ADA to not allow a disabled persons service dog with them at a hospital or respite center. Service dog etiquette does not include interupting a dog while working and most owners do not want their dog to be given alot of attention while working.
            It is different when they are off duty and just a regular dog.

            It does have to be considered that if a blind or deaf person was to enter the hospital, I do not believe
            there would be an issue with the service dog. This needs to be looked at objectively. This differentiation in treatment seems to problematic. The blind person has a disorder of the organ the
            eye while the patient at the respite has a disorder of the organ the brain. When will patients that
            have psychiatric illness’s have to stop apolgizing for having an illness in their brain. This is an illness which they are so unfortunate to have. But nonetheless the psychiatric patient deserves to be treated with no less respect and rights. I was unaware of this, but there is a campaign in MA for years for psychiatric patients to have the 5 basic rights. Hospitals say it is too expensive to accompany patients outside for fresh air. What? Patients are sick and they have come to the hospital or respite and not a prison. The fresh air wil probably improve their mood and help them rehabilitate sooner.
            When people are ill they want their comfort and supports around them. They want to be able to keep in touch with their community and mantain the closest resemblance or normal as possible. That would include things such as keeping your service dog with you if you are disabled. And other personal belongings such as cell phone.

            If someone did not have their cell phone with all their contact number in it how would they contact family or friends. Do you allow outside counselors to come into the respite? What if someone wanted to call their therapist to schedule an appointment? Is it helpful to cut off these supportive ties at a time of crisis.

            Recently, just learned about person centered treatment. If that model was followed I believe you
            would allow the service animal. Some people are afraid of dogs, but service dogs are chosen for their temparment and have been trained to ignore most others and focus on their handler. Are the bedrooms for one person? The dog would not bother another. If there are groups the dog would stay right with his handler and lay at their feet as they do under a table in a resturaunt.

            It is really scary to have a psychiatric illness and I would not wish it on anyone. Do you think there is an illness out there that would trade with a psychiatric illness. I think not, they would keep whatever it is that ailed them. Psychiatric patients are on the bottom of the pond.

            I don’t think we have reached the conciousness that psychiatric patients are sick like any other patient.
            They may in ways be much more stressful to treat and care for, but that does not make them any less a sick patient. When their rights are started to strip away no service dog, no cell phone, no
            internet access and you may need restraints, I wonder for whose benefit are these rights taken away?
            Is it easier for staff. Some patients do not communicate well with others because of their disorder and find it soothing to communicate by computer.

            If it is a concern that cell phones have cameras you could provide basic phones. But again this points out the fact that we are even discussing the fact of removing some personal items from a patients
            use. If we were discussing ANY OTHER patient population this would never come up. Any other patient population would be indignant to have something of theirs taken from them and locked up until
            they were released.

            The stigma still seems to seep in with all the training and antistigma campaigns that there are.
            But you do not see antistigma campaigns on the major television channels just as you don’t hear
            anyone discuss the 30 Centers of Excellence for Bipolar and Depression treatment and research
            that are part of the Health care reform law that has been in the media spotlight the last 6 months.
            Again, stigma strikes with only 10 million dollars appropriated out of a possible maximum of
            100 million. Well, we have 5 more years to try increase that funding. Stigma is a terrible thing and so
            is discrediting a whole communty in society as not worthy of funds for treatment or research
            because their illness is in their skull instead of their torso. Aides patients who have only existed
            since the 80′s have made huge strides in research and treatment for their illnesses compared to
            mental health patients who have had the same disorders for centuries. The statistics are there to
            support huge funding for mental health research when you consider the prevalence and the enormous cost to society in missed wages, disability and suicide. So if obscure and rare diseases have
            federal funding for specialized hospitals how can anyone explain that mental health disorders do not.
            And when the state needs to trim some money off the budget why is it they turn to those with disabilities? Are they least likely to protest the loudest……..

            I am going to call the Department of Justice tommorrow so I can find out the answer to is it legal to
            not allow a service dog to a respite or a hospital when a patient is admitted. Maybe it is illegal and again there has been no psychiatric patient that has been willing to speak up loud enough. Hate to be that psychiatric patient that was raped by the non psychiatric patient. No chance of justice there.
            The injustices towards psychiatric patients just continue.

            Dr. Daniel Fisher the respite center that you are opening sounds wonderful. It is definately a value added service to the psychiatric community. I do hope that patients rights and property that is confiscated will be respected more than it is in some of the psychiatric hospitals. Glad you mentioned your cat, they are wonderful pets.

            Would you please mention to your staff and colleagues about the Centers of Excellence for Research and Depression for treatment and research? Senator Kerry was an original cosponsor of the legislation that got incorporated to the Health Care Reform. People need to contact his office by phone or email and support the maximum funding for these Centers for the next 5 years. Send a letter to his health care legislative aide, Stephen_Meunier@kerry.senate.gov or a letter on real paper would probably be better Honorable Senator John Kerry, 1 Bowdoin Sq # 1000, Boston, MA 02114-2928 and call 617) 565-8519 and Senator Scott Brown, 2400 Jfk Building Boston, MA 02203 ,(617) 565-3170.

            Thank you for making this post availabe to the community to collaberate on issues regarding psychiatric care and the new respite facility. I sincerely hope that you are afforded the opportunity to open 5 more respites in MA. The RLC is a great model.

          • Howard T.

            Someone posted a criticism of peer-run respites on this blog and
            signed the post “Hdt”. I don’t know who that was, but it wasn’t me.

            I have been an active member of the groundhogs and remain a huge supporter
            of peer-run respites. I also am a believer in choices and alternatives.

            I am the co-executive director of the Metro Boston
            Recovery Learning Community http://www.MetroBostonRLC.org a peer-run organization
            that offers peer support at three locations in the Boston area and a warmline
            open six nights a week (Tuesday through Sunday from 4pm-8pm, 877 733-7563).
            For more information on warmlines, which would be an excellant resource for
            diverting people from traditional emergency services to peer-run respites), see
            http://www.warmline.org This website also links to a directory of peer-run respitse
            and more information at the National Empowerment Center.

            I am looking forward to DMH issuing the RFR for an initial respite in Massachusetts
            and hopefully more in the future. I helped organize a trip to visit Rose
            House in Poughkeepsie, New York and last year visited the new Keya House in
            Lincoln, Nebraska. I also operate two free listserves for people interested
            in networking with others on peer-run respites and on warmlines.
            Each has over 80 people supporting each other in an active community.
            You can sign up by clicking on the links at http://www.warmline.org

            Sincerely,

            Howard D. Trachtman, BS, CPS
            howard@BostonResourceCenter.org

  • Charlie

    I am so glad to see that the leadership at the Department of Mental Health has taken such a progressive position.

  • John

    The current system has failed. Why not give this a try. It is cost effective as well.

  • Kimberley W

    As someone who worked for a very well-reputed “mental” hospital and saw the abuse first-hand and how clients were denigrated by staff behind their backs on a daily basis, this is an idea whose time has come. Clients need respect and to know that they are not alone to get through-not to go to a hospital and feel very alone in what they are going through. People with “disabilities” make up 20% of the population-the largest minority group in the country. It is time they are treated with equal rights and dignity-that is the Best way to recover.

  • Michael K.

    Great idea. Been there, done that, got the T shirt.

  • http://www.mercurialmindbipolarblog.blogspot.com/ Mom, Interrupted

    As a survivor of the behavioral health intake process, this is absolutely a much past due necessity!
    Congratulations Dr. Fisher and the Recovery Movement.