Finding and Funding Our Way, Outside the System

Chaya Grossberg
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There’s a growing (and soon to be quickly growing) group of us who are not therapists or psychiatrists but who offer “coaching,” connection and support. We offer this support to those coming off psychiatric drugs, or who would like to, or are opting to not go on in the first place but are facing pressure to. Most of us are psychiatric survivors so a lot of our knowledge and information is from firsthand experience. Others may have never been on psychiatric drugs but know a lot about the ins and outs of withdrawal through close association with those who have.

We don’t have licenses to lose or Western Psychology schooling and indoctrination to unlearn. Like all people, we have our own issues; sometimes we don’t have a lot of money, or we have health challenges and sensitivities. We’ve voluntarily worked with others for years while on disability income, working a side job and/or receiving money from our family and community because this is something we deeply care about.

We nearly lost our lives to psychiatry and know we have an obligation from the core of our being to reach out to others as we’d never be where we are today (much freer and happier and stronger and more thriving) if others hadn’t been there for us.

There’s an elephant in the room about all this though, and that’s money. How do we charge for our time and offerings without perpetuating oppression? It’s a tricky question. Some of us have money from other sources or another job, or we work for a government funded agency, accepting certain limitations to what we can do (and making big differences in many lives). But what about those of us who want to do this full time without compromise?

There are many avenues in which to do this work of supporting people before, during and after their withdrawal. Ideally this supporting would happen organically in community, but we are only halfway there. At this point in time, there are still many who are reaching out for someone to listen to them, validate them in rejecting the medical model, and be a personal witness and friend during this difficult, often torturous ordeal.

Many times during this process one cannot find enough friendship or support. There are times when a financial transaction can facilitate this process. It’s very complicated, and I have no intention whatsoever of reducing this topic to, “This is just the way things work and we need to accept it.” We don’t need to accept it. Yet we are all finding our own ways to live in it, which sometimes include charging money for mentoring, “peer support” or whatever we opt to call these relationships when they function outside systems and government funding.

Since I started sharing my website and blog about coaching people who are coming off psychiatric drugs a little over a year ago (after working in a similar capacity as a volunteer or for other organizations for almost a decade), I started to receive many many emails from people all over the world telling me their stories of suffering in the hands of psychiatry. This became a conundrum for me, as it is for others. We all have our limit to how much we can personally and effectively support those we’ve never met by email, and mine, to be honest, is minimal. Receiving so many of these emails, I started to become numb to them pretty quickly and they started to all sound the same to me: bitter, indignant, angry, frustrated, desperate, and all with good reason.

Each of these people deserved and needed someone who would sit down and listen to them, validate their experience and assist them in their withdrawal process with presence and patience-or better yet, a whole community of such people. We are getting there. Our movement has many high hopes and dreams and even success stories of creating communities to be a safety net and loving cushion for the many people who have had their lives and health torn apart by the gluttonous fangs of psychiatric drugging.

Since I felt a need to devote more of my time to addressing these issues in writing and in person or by phone, as well as take care of myself to make this sustainable for me, I had to decide what and how I would charge for my time. We all have our own limits, as much as we want to be grand saviors of the whole world (or seen that way). Just kidding.

There’s no cookie cutter “right way” to do this, just as there are no cookie cutter categories people fit into or pills that will make everything better. Warning: controversial opinion ahead (but please read what follows before dismissing it). I think people helping others get off psychiatric drugs should be paid about $500 per hour-because they should earn more than double what the “professionals” who caused the harm they are undoing make. That’s an outrageous amount to charge someone who’s struggling though, in most cases. Any amount is outrageous. The whole process of recovering from psychiatric drugs needs to be adequately government funded. Why should someone have to spend a lot of money to undo the effects of drugs they were forced or coerced to take or duped into taking in the name of medicine? Ideally Big Pharma would pay us all $500 an hour (and they would still be sitting high up on their jackpot afterwards).

The point is, there’s no objectively fair way to run this kind of business (or any really but that’s a whole other topic). We need to decide for ourselves how much we can offer for free, how much to charge and what services to charge for. There are no easy answers. We are doing this work because we care, and we also need to take care of ourselves, which as trauma survivors can be challenging. Even while providing far more kind, compassionate, intelligent, gentle, safe and effective support than most psychiatrists, we question our worth far more.

Those in these demographics are ever growing though, and we will need to find ways to support others while supporting ourselves and each other. The numbers of people seeking support outside the system because they don’t trust mental health professionals, people who want connection and transparency in that support (to know the story of their “supporter” and have a reciprocal human relationship) and the number of people getting off psychiatric drugs and feeling called to reach out to others in distress are continuing to grow and will not stop anytime soon.

And none of this is happening in a socioeconomic vacuum. I’d like to hear how you are finding and funding your way with all of this, and how you are accepting you own way to reach out to those struggling with psychiatric drugs and withdrawal.

36 COMMENTS

  1. This is an amazing idea! Doing something as this would give me the purpose in life I so desperately need. I was a Family Nurse Practitioner before 18 1/2 years of poly drugging with psychiatric drugs cause me to become to mentally and physically ill I could no longer work. I have successfully come off all meds and am 20 months off at this writing. My educational background and personal war with psychiatry and the damage they did to me qualifies me as an expert as it does countless others.regarding how much to charge is somewhat of a conundrum. Maybe someone who is knowledgeable in Grant writing could advise on this. It would be nice if we could be paid a fair and equitable fee and a percentage of this returned to each of the victims who have been harmed, thinking out loud here. This is such a brilliant idea you have written about . I long for this idea to be realized and would so much like to be involved.

    • grant writing. Hm. Peer support. Peer support coordinator. Making sense of medication groups. Sharing positive and negative experiences of psychiatric medication. Self education initiatives. Hm. Positive health outcomes for disadvantaged communities aiming for reduced days in hospital, increased life expectancy, better involvement in medication decision making, better quality of life. Enabling meaningful engagement with service providers (don’t tell them that the meaningful engagement is telling the services to get right out of your life and never come back). I see that grant form right in front of me.

  2. Nice article, Chaya.

    I have a really hard time getting behind government funding for the type of work you do, simply because I have seen how it becomes an incentive for people who are barely “qualified” to bill the system, as well as how much fraud and waste it perpetuates. Once the government becomes involved there will also inevitably be a license or similar qualifier for whoever is billing. I think the days when having lived experience becomes a qualifier in the eyes of our government are a long way away–beyond our lifetimes.

    I don’t really do anything useful anymore, except spout abrasive opinions on things I have experienced, seen or studied with regard to the Movement (if anyone really considers that useful). If I was going to again do any type of practice on a large scale, I do believe it would be outside of the money economy. With the advent of Bitcoin, it seems that our economy is changing rapidly.

    Sharon Cretsinger, XLISW
    Kent Empowerment Center, Kent, Ohio

    • Sharon,
      To paraphrase Charles Eisenstein, “What story of the world is a Bitcoin user creating and how will Bitcoin embody and reinforce that story?” I don’t think I know enough about Bitcoin to know what it values. What story does Bitcoin tell about Mental Health conditions (i.e., gifts)?
      Aleta
      RISN House

  3. I’m going to be maybe both lazy and honest and avoid the question. I admire your work Chaya and see the growing “coming off” movement as the biggest advocacy hammer against bio-psychiatry.

    I think the profit motive is problematic in that once the incentive becomes building community and economically sustaining me as an individual – the community building is compromised.
    While admitting that I am not free from the influence of profit motives in my own endeavors – I’ll just say I don’t know what my thoughts are on how to fund these types of services. Maybe one just keeps doing what they passionately believe is right and funding works itself out without conscious planning. Again, I don’t know.
    That said, I believe that with the efforts of individuals like you all over the globe – we will make bio-psychiatry largely obsolete in my life time.
    This excerpt in particular excites me: “The numbers of people seeking support outside the system because they don’t trust mental health professionals, people who want connection and transparency in that support (to know the story of their “supporter” and have a reciprocal human relationship) and the number of people getting off psychiatric drugs and feeling called to reach out to others in distress are continuing to grow and will not stop anytime soon.”

    Keep up the great work that comes from your heart.

  4. Great post Chaya. I think this is a challenging topic to bring up. Is asking for payment from people who have been abused by the system just a form of continuing the abuse?

    Though there are some differences, I look at the 12 step model for drug and alcohol recovery and see how those folks work with people who are “recovering.” There is both peer based and professional level help. The peer based support is generally free (meetings, sponsors) while the professional help is not (counseling, rehab).

    I think there is a place for both in the mental health recovery community as well. If you have taken the time to develop your skills to create a template for helping people to recover in a way that improves health and well being, I see no reason you shouldn’t be compensated. Your compensation helps you to have enough to support you so you can best support many many others.

    I think part of the key can be to extend some of your services at reduced or pro bono levels for those who can’t afford it. Finding a good balance can be challenging.

    Helping people to “come off” is an incredible service, and one sorely lacking in this society. I think there is both a place for peers and people with specific skills in this area. Thanks for the thoughtful post.

  5. The Social Security Disability program now allows one to earn up to approximately $1000 per month without affecting benefits. Self-employment allows one to deduct business expenses, which can reasonably can amount to 50% of the gross income, so the business could gross up to $2000 per month.

    If one can obtain a letter to Social Security from a medical doctor stating that one’s nutritional supplements and chiropractic care are “reasonable and necessary work related expenses”, then these too can be deducted, not from the gross income amount, but the net amount.

    In other words, if you have supplement and chiro expenses of $400 a month and your business nets you $1400 after expenses (car, phone, rent, supplies, meals on the road, etc.), your income for Social Security purposes is $1000.

    • A person can also claim *unpaid help* with the business. In other words, if a friend or family member helps, but is not paid for 20 hours per week; and it can be shown that the work would be worth $12 per hour, the claimant can reduce their income by $240 per week.

      If someone wants to slowly come off the disability rolls, they can do so, by using 9 trial work months (over substantial gainful activity level). The SSA’s Ticket to Work Program has information on how to do so. Also, TakeCharge is a agency that can help you keep a portion of your benefits after returning to work, and coming off SSA benefits. This can amount to over $19,000 over 36 months. The program is not only above-board, but has the highest success of all SSA approved programs.

      More info on SSA’s Ticket to Work, and TakeCharge here:

      http://discoverandrecover.wordpress.com/work/

      Be well,

      Duane

  6. Chaya, thanks so much for writing this. I know I challenged you recently on this very same issue in another venue (Facebook). It’s a challenging question. When I made the decision to stop going to therapy, I did so because I wanted to stop paying money or have insurance, that is, government or taxpayers, in my case, pay for what should occur naturally between humans, that is, spoken conversation. Therapy felt like prostitution. I thought that perhaps people with mental illnesses were often so isolated or ghettoized that their only conversations were within the therapy venue. They, or we, spoke in “group” or to the “therapist” and never had any other spoken conversation. Patients forgot how to converse. Suddenly (probably in the 1990’s), cookie-cutter “workbook”-style groups were launched that “taught” mental patients “conversation skills” because they found that the patients had literally become unable to speak except to say, “I feel…” or, “I can’t cope,” or, “Can I have a PRN?” At the time I was disgusted with these “groups.” When I’ve been more active, I’ve enjoyed our bus system, and conversed with fellow riders. I remember my hitch-hiking days, the way I had been skilled at conversing with strangers long before brainwashing. However, I’ve also experienced such isolation that I’ve told myself it would be a terrible shame if I had to submit myself to such therapy prostitution. Or if the only person on the planet who would pick up the phone, who hadn’t yet unfriended me, would be the suicide hotline. Would I really have to pay for friendship? Had it gotten that bad? However, I didn’t give in. I found this site and I did finally find others who were in the same boat.

    I am, indeed, a professional. I am a masters-level trained writer, that is, I hold an MFA in creative writing, which isn’t the same as journalism. I’ve been told by folks that are also professionals (carpenters, movers, mechanics, pet groomers) that by all means, if a person is professionally trained, perhaps a monetary charge of sorts would be expected for work done or for output. Some charge per page or per hour or per manuscript, or they work out a sliding scale. Some work by the barter system or in exchange with other professional writers. “You dog-sit, mow my lawn, clean the pool, I’ll have that manuscript done in week.”

    However, I work a little differently. I don’t know why. Free. Free is good. I think poverty has changed me, and there are different “levels” of poverty. When I was 17, I thought poverty meant “you had to apply for financial aid.” Years later, I thought poverty meant, “You get behind on the bills.” Today, more and more of my friends are homeless. I fear I’ll be the next. I’d say I was truly moved the first time I visited a food pantry. I admit much of what I bring home goes to feed my little dog.

    I feel that there is no shame in bringing home these free items. My town is rapidly becoming more wealthy. The poor are becoming marginalized, disenfranchised, and hated. The local food pantry is the only place where I don’t feel that local hatred, the one place where there is no shame. This is a Boston suburb. It was once an immigrant town.

    Therefore, in celebration of what is FREE, I offer everything I do freely. If there’s a job already offered that already has a pay offer, I’ll accept it, but I won’t charge on my own even if I’m doing what I’m professionally qualified to do. I’m told that’s unprofessional, that “professional” means “something someone pays for.” I think that’s baloney. I don’t think it matters how expensive or cheap it is, but how you season it, and who comes to dinner.

  7. I have said for years that I think the timing is right for non-profit organizations to address this need. I think there would be philanthropists who would gladly donate money. Even corporate donors.

    There are young people who have been placed on psychiatric drugs, who have wealthy family members who might be more than willing to contribute. Veterans organizations are searching for ways to help fellow vets; religious organizations as well.

    This service would likely be seen as serving the public good for an IRS tax exemption. I would suspect there would need to be licensed doctors on the board of directors for liability reasons. It would take a bit of work, but salaries could be put in place for non-medical “coaches,” with lived experience.

    My two cents,

    Duane

  8. I have a donations-based practice, where I have supported many people who choose to come off medication for hardly any payment. While I am a trained and certified integral health practitioner, based on Chinese and vibrational energy medicine, I am not a western medical practitioner, so I refrain from offering medical advice. But I do hardily cheer people on and offer what I can from my own experience. I tell people that there is no manual for this, and this is where we discover our own natural processes of healing, so I am there with them when doubts and fears start to creep in, and I offer my feedback and encouragement. Being on the inside of withdrawal can be so scary and blinding, and even though it was a while ago for me, I remember it well. I did not have any guidance outside of myself, as I knew no one at the time who had been through this. I was not aware of all that is written about now.

    I try to help soothe anxieties, and encourage folks to access their inner guidance. It is, inherently, a chaotic and complex process, and I try to help bring some ease into this process, best I can.

    I also work with a 5th generational herbalist to whom I refer people for internal support, and for detoxification, as well as regeneration of cells, organs, and nervous system. She is the one who helped me to leave meds behind years ago, and to find my center again.

    I am not at all comfortable with the concept of ‘money,’ in any regard, and I truly dislike the power we have given this, as a global culture. Part of my spiritual practice is to work with the energy of ‘abundance,’ which is not at all necessarily about money, but about energy. We have a misconception that resources are limited (thanks to what we’ve been programmed to believe, for the benefit of a few), whereas it’s my belief that energy is truly unlimited. This is all based on teachings I received as I was healing, and it has worked fantastically for me.

    I did not have money to make my film, start my healing practice, nor to move from the city to the country, but when I set an intention to manifest and focused on my natural abundance, the resources came to me, in miraculous and unexpected ways. When I look around me, I see my abundance, although it is not reflected in my bank account. Still, I feel my abundance and I see and experience it thoroughly.

    Sometimes, people tell me they feel badly that they can’t pay me more than a pittance, and I tell them that the universe compensates me, and it always does. This is how I survived living on SSDI in an exorbitant city like San Francisco. I had once feared being cast into the streets, and it almost seemed inevitable at one time, but it never happened. My authentic faith and trust in the universe never failed me.

    All in all, for me it is not about money. It is purely about the energy of abundance, which, when one taps into it, is limitless. I don’t have much cash at present, but I lack for nothing in life, because my heart is full and trusting. These were not easy lessons to learn, given all the betrayal we have faced, but forgiveness and being in present time go a long way to connect us with our abundance. These were the most valuable lessons I learned in all of this, and this is what I always try to pass on to others. Not all accept it, and that is fine. I do the best I can.

    • Chaya, are you still planning to be in the Bay Area soon? If so, I do hope you can find a way to travel north a bit as an excursion. I’m about 250 mi north of SF, just south of CA/Oregon border.

      I would love to speak more to you about this in person. I facilitate a group of local healers and teachers, from which I’m currently on hiatus until April 5, but I have an updated syllabus for an 8 week class which specifically addresses all of this, and I would love to share it with you.

      So far, I’ve had good success with my off-the-grid program, as my testimonials would indicate. Email me if you like, and I’ll be happy to share a copy of it with you, see if it speaks to you. I’d very much enjoy your feedback, as well. I’m so very aware that you have a lot of experience and wisdom to offer, and I’d love to know what you think about what I’ve put together here.

      My contact info is here: http://www.embodycalm.com/Contact.html (p.s. the pic below contact info is where I live now, my natural abundance).

      • Got your email, Chaya, and responded right away from my primary address, to which my business address forwards, so I wanted to make sure you got my reply. I didn’t want you to feel I left you hanging. Hope it all works out! Take good care.

  9. I took this as my jumping off space to think about this issue: “What would be possible if Mental Health Conditions were viewed as gifts that require effective management and responsible use? How would healthcare protocols and delivery be impacted? How would spiritual formation best practices and delivery be impacted?” I did so because I believe that at one time…long, long ago…these gifts/sensitivities were viewed as “spiritual gifts” and were developed by spiritual formation. What ways have spiritual formation facilitators been funded? At first, spiritual formation was done within the extended family. With the evolution of the tribe to village and the evolution of money, there was the recognition that 10 families could support a spiritual formation facilitator by contributing 10% of their income to the facilitator. This is a proactive stance. Of course, if there are 30 families then they can either hire 2 more facilitators or they can drop their percentage of support (How many facilitators do we need?). In some communities the role of facilitator circulates through the community each year. In some communities, spiritual formation is done by a community development corporation which does its business separate from the spiritual community, using grants. Some corporations are hiring chaplains for their businesses, as an extra benefit for their employees (My spouse is the chaplain for the ferries from NJ to NYC). Other spiritual formation facilitators are bi-vocational or volunteers. I have contributed in this way (and while the spiritual community to which I belong rarely pays me directly for my services, I have received housing, education, travel, etc.). And in some countries, spiritual formation is funded by the State. All of the above has worked and no longer works well as the story of money has changed. As we change the story of mental and spiritual health, we will also need to change the story of money, in my humble opinion.

  10. Hi Chaya,
    I haven’t been gainfully employed most of my adult life due to discouragement and sedative effects of meds. If I go off them I lose SSI and other benefits. What should I do? Lie?
    Maybe SSDI is different in that respect.
    I may be able to earn a meager living writing online. Earning minimum wage or less could help me earn maybe $900-$1000 online working full-time.
    I guess I’ll have to lie for a while as I taper off the drugs. Oh well, they lied to me first….

  11. My feeling right now is that I should not charge anything for the various things I do for people, I do accept payment, but only voluntary, and won’t ask for it. I abhor seeing absurd charges from anyone, and I don’t care how talented, creative, insightful, etc, that person is, nor do I give a hoot how many degrees that person has. I have a master’s in Creative Writing that in fact cost money to get. However, I have never made a cent from it. I have become a much better writer, and that’s priceless. I am doing what some might call “peer support” and I feel that if anyone is charging money for it or receiving a paycheck from the government or an agency, it’s not peer support at all. it’s more like the prostitution-like thing called “therapy.” Paying for friendship, that is. If we submit to too much therapy, it’s like substitution for friendship. Guess what happens? Friends slip away, to the degree that the therapist runs the client’s life. If a fee must be charged it should be the price of a pencil, a lapíz. Not the price of a bicicleta, new or even used.

    Julie Greene