In this Episode of Family Psych Consumer:
Welcome to Family Psych Consumer! We Are Here to Help You Become A Competent Navigator in the World of Mental Healthcare for a Loved One with Mental Illness.
In this episode, Tom explains to parent and family caregivers how they are influential stakeholders in the life of their loved one with a psychiatric condition, and strategies for putting that influence to work. In essence, parents and families pay for, select, and support all treatment decisions, and yet are very marginalized by the treatment process. And because most families are unfamiliar with that process, they need an unbiased, expert source to understand how to bet assess and choose mental healthcare providers and services.
Tom details what outcomes he will deliver for his listeners at Family Psych Consumer: 1. Accelerate their learning so they can be informed now about how to shop for services and treatment; 2. Improve their skills and emotional resiliency day-to-day; and 3. Improve their return on investment on all time and money invested in the mental healthcare world —especially since a loved one’s trust in the process is usually frail and a bad treatment outcome can be detrimental to that trust in the long term. There will be 5 main content areas at Family Psych Consumer; Family Psych Shop, Healthcare Toolkit, Shrink Rap, Parent Life Boat, and Caregiver Recovery; each will deliver unique content from experts who will coach listeners as industry insiders. Tom also takes time to review his 30-year history as a unique experience that led him to be a national reviewer of quality mental healthcare and how his purpose is to pass on his critical thinking to his listeners. Lastly, he discusses the humbling realities of today’s mental healthcare landscape and how it dis-serves families, and how the Family Psych Consumer community can create a more caregiver-centric delivery system.
Full Episode Transcript
Welcome to Family Psych Consumer,
This is Episode One, and I’m looking forward to a long term connection with you, our subscriber, about a very intimate topic -- navigating the mental health care delivery system for someone you love.
So in this first episode, we’re going to be talking about the basics. . . what's our purpose . . .why are we here NOW. . . what my story is and why I'm a voice in this arena . . . and what will be our content offerings here at Family Psych Consumer.
So let's start here . . .who's our audience? Our audience is parents, spouses, and family members who take care of someone who’s in mental health treatment. Our audience is also those parents and family members who pay for the mental healthcare, and those parents and families who need to have a better understanding, or even an initial understanding of what it is so they can be better caregivers for their loved ones.
So the Family Psych Consumer community (as I call it) exists to connect our listeners to the quality information and the unbiased support they need to develop new living and coping skills, and become competent consumers in the mental health care marketplace.
Our listeners share a primary goal—improve the lives of the people they love by getting the best from the mental healthcare world. .And MY Goal is to deliver 3 outcomes for you, my listener -
Accelerate your learning so you are informed now about how to shop for services and treatment;
Improve your skills and emotional resiliency day to day; and
Improve your return on investment on all things invested in the mental healthcare world —your time, your dollars, and the most precious of commodities, your loved one’s trust in the treatment process, and their buy-in in seeing that next psychiatrist, therapist, or interventional program like rehab, the stakes are very high for them, and overall, we are protecting someone’s relationship with the treatment process, because that process will let them down at times, and as a result, erode your trust in the mental healthcare system.
I founded Family Psych Consumer to create a national community of caregivers who can grow in their knowledge and skills, and be more constructive advocates in the lives of their loved ones. As you to spend time with us, I want you to achieve 5 primary outcomes. . . Autonomy, Mastery, Purpose, Progress and of course Social Connectedness.
So Autonomy. . . is experiencing that you have control over the illness event and not feeling controlled BY it. Mastery . . .is being competent to create change. Purpose. . . is having intention to make a difference in your own family life or parenting. Progress. . . is experiencing measurable change. And of course the last thing is the Social Connectedness because when we connect with others of about shared experience, we get further faster, in our efforts to create a healthy family.
So back to you, our audience. Whether you are a veteran caregiver or new to this stressful world, you all know this - You are subject experts on your son, daughter, spouse, or family member who is struggling with a psychiatric illness or event …but as the day to day manager of that “patient”, you are rarely asked to inform the thinking for the healthcare providers treating your loved one; whether it’s the outpatient, residential, or inpatient level of care, you are usually included in “family work, or “family week-end”, or a conversation in discharge planning or in the ER, but it’s usually a hit and run experience versus an inclusive collaborative process.
What is distressing to me about the world of mental health care is that caregivers are expected to manage the day-to-day welfare of the patient but offered no critical thinking or support by the provider is working to treat recover the creates.
So here’s how the doctors and caregivers cross paths in the treatment process…a psychiatrist may create a breakthrough with the patient . . . start a new medication, or help the patient buy-in to a new exercise or sleep plan, but the follow-through and reinforcement of that plan happens in the world of the caregiver. If someone gets sober in the residential program or manages their bipolar illness in the psychiatric residential program, they still come home to you, the caregiver and help them manage and sustain their outcome in your world.
So this is the disconnect that always distresses me – that the outcomes the mental health care world create are frankly dependent on your competency and resiliency but the provider world does not invest in developing that competency.
WHAT Is Our Purpose? -
To inform you, coach you, and support you so you can get the best out of the mental healthcare system as it exists now.
And why this focus? Because you count on hospitals, psychiatrists, and therapists to take care of your loved ones . . .usually without any understanding of what the actual treatments are, or their success rates, or how you should participate in the treatment selection process.
Now I understand that “treating” the brain (feelings, thoughts, and behavior) is a more nuanced medical theater than say treating the liver or the heart. But BECAUSE its more nuanced, the mental health community needs to do a better job explaining its treatments and therapies so patients and families new to mental healthcare can make competent choices when choosing providers and services.
Parents and families pay most the bills; have tremendous impact on most treatment decisions – because of their influence, money, or other resources (like health insurance);where someone goes for treatment, how long they stay for treatment, and yet this major influencer goes unnoticed or disengaged by the majority of providers
That's why we're here . . .to serve that vast community of US families who are on the front lines of managing how a loved one uses the mental healthcare system. You and I both know that you are entrusting your loved one with a therapist, program or hospital and sometimes they do a good job and sometimes they don’t . . and in all fairness, sometimes they can’t. But the stakes are so high for the “patient” who will have an outcome (good OR bad),and that outcome will impact how he or she continues to trust this thing called mental health treatment that is supposedly to help them. And this is why I want you to be better steward of how your family member uses mental healthcare, because my history has proven this – that as the parent, spouse, or family member becomes a competent buyer of mental healthcare, their loved one recovers faster, and retain their recovery longer.
Why Are We Here NOW?
First, a disclaimer. I am not here to hammer and blame the state of psychiatry and mental health care – the people who go into medical residency or become therapists, go into this profession wanting to bring recovery to people’s lives. And there is the science of psychiatry that works very hard to be evidence-based and deliver better critical thinking, innovation and ethical care. AND I've seen tremendous goodwill by individual players all over the country, that all being said, I am here not to call out psychiatry and mental healthcare - I am here to improve psychiatry and mental healthcare . . . I'm here to challenge psychiatry and mental healthcare and all the individual treatment modalities to raise their game because they can, because the caregivers of this world need to know how to find the best care available so the person they love can get their life back. So that is why I am doing this - to point out the good, the mediocre, and the bad to caregivers so they can know where and how to expedite the recovery of someone they love.
In it’s worst forms, mental healthcare has become a reimbursement delivery system with no investment in innovation with no focus on recovering the life of the patient only treating the patient.
For this sin, I do not blame the individual psychiatrists and therapists but the large hospital systems that crank Medicare, Medicaid, and capitated private insurance payments (for what is depressingly known in the industry as meds and beds). Lately, for-profit treatment and addiction centers have been sprouting up like mushrooms across the US in recent years because Wall Street has discovered mental healthcare and its high profitability. Now, sophisticated marketing is targeting families directly about how great a program is.
And there are no uniform outcome standards; You can call 50 psych hospitals, rehabs, or private programs and ask how they measure outcomes, or what outcomes they measure and 45 will say they don't.
So parent and family caregivers enter a marketplace that is essentially a guessing game of quality because there is no one qualified source for understanding, consumer reporting, or coaching to judge quality
This is why I am here -
So I ask you, as a matter of common sense---
What business in America does nothing to help its customers understand it, evaluate it, value it, want it, purchase it, and benefit from it?
Sometimes I think mental healthcare is like the adult section of bookstore or video store back in the day: you know it's there, you know you want it, or at least voyeuristically curious about it, you’re embarrassed that you want to go back there, (and you know it's okay to want it). Well, the most courageous way to bust through your stigma is to march right back there, review all the titles, take a few home, and then come back and tell the owner what you think about their selections.
So let's talk about my story and why am here, and frankly whether I’m worth listening to. . . so I'm 58 I live outside Washington DC. I've been working in this field about 30 years. But by my standards,truly competent to about 15. And here's what I've been doing. I started working in community mental health, primarily in vocational rehabilitation which focuses on teaching persons with disabling psychiatric conditions like schizophrenia or bipolar illness how to learn job skills and live a functional life. I became a practitioner in psychiatric rehabilitation, a counseling model that teaches a person how to live with a mental illness and function and how to have a developed life despite the illness so my professional world view has always defined functional recovery as the most meaningful outcome following medical stability.
In the mid 1990s, I had the privilege to work for Psychiatric Rehabilitation Services in northern Virginia.a “best in the nation” program in my field and what they did amazingly well was deliver person-centered programming to each individual working hard to recover their lives and while there, I managed an innovative program for executive women living with depression and bipolar illness. That experience further informed me about how persons with developed lives somehow managed life with a mental illness that disrupted and sometimes destroyed their careers and personal lives this experience helped me understand very intimately how people recover their lives and not just their brains and how do they make their lives work with this illness in it.
From there, I began to focus more on families and caregivers who support those lives and started a care management practice in 2000 that served families in DC and NY. I was lucky to have great staff and together we created great outcomes. Our outcomes were simple - If you were our client, your inpatient or day program utilization went down 80%, your life and illness became more stable, you experienced a more functional life . . .and our family caregivers experienced more competency, less stress, and more respite because their loved one was improved.
Lately, I have been focusing primarily on parents and family caregivers and teaching consumer advocacy in mental healthcare them to be competent consumers. So what's been most compelling to me the last say 15 or 20 years is my access to countless psychiatric hospitals, rehabilitation centers, day programs, and meetings with psychiatrists and therapists from all over the country. This experience have made me a unique animal in mental healthcare because I’ve had more exposure to more facilities and providers in more areas of the country than my peers. I've actually had my hands in everyone else's services so I've been able to judge quality and direct families to where that quality is. So as a result of this lived experience I’ve developed this singular goal for caregivers: that is that every minute you talk, think, research, or share, or every dollar you spend in this mental health care system, delivers something of value to you because I know that every hour or dollar of value that you've gotten, there’ve been hundreds if not thousands that have yielded nothing, and every minute or dollar lost only wears you down further and burns your cash faster and frankly demoralizes you further about where the real help is.
What will we be offering?
I want to start with what FPC is. . . and what it isn’t.
What it is …is a consumer reporting about all types the service delivery of mental healthcare at all levels of care, how it is delivered, and what are the examples of quality; and reporting about all the related players and realities that impact mental healthcare and treatment, like public and private payers (think Medicaid and Medicare, and private insurance). . . and the different types of settings in which mental healthcare is delivered.
And as new insiders, how our listeners can understand how to shop, vet, assess, and determine value as they seek out and purchase this thing that can have the most consequence to the quality of life of someone they love.
And this is my foundational assertion, where I am calling out the mental healthcare world and challenging families now and in the future. With the exception of medical fields whose sole purpose is to save or prolong the life of a patient , NO field in medicine has assumed authority to impact the quality of life of a patient as psychiatry does. . .but I don’t believe the mental healthcare community does anything to earn it to validate it.
So it needs to raise its game. . . or at least realistically report their outcomes and abilities. And families, as consumers, need to direct their attentions and dollars to those professionals who bring true science, innovation, and quality of craft such that they are demonstrably improving lives of their consumers. In short, my message to caregivers is this - do not trust the welfare and futures of your precious cargo with providers you “hope” can help.
And my message to my mental health professional peers –those of you who are tracking and delivering outcomes and following best practices, separate yourself from the mediocrity so families can find you and benefit from your quality work. And I will be here helping them find you
So let me be clear, I am not here to pick winners and losers…I am here to explain what quality service is, what quality critical thinking is, and by creating a consumer movement in the mental health treatment, ensuring that every parent or family caregiver can competently navigate that mental healthcare world.
So, back to what FPC is and is not…here is what it is NOT. We are not counseling, or therapy, or a replacement for your own critical thinking about how you care for your loved one. While we may talk about the law, and issues related to the law (like guardianship, or involuntary commitment) we are not providing legal advise. We are here to improve your skills, stamina, and support to navigate this mental healthcare world by bringing our lived professional experience and unbiased views to your day-to-day life as a consumer.
To our subscribers who need the support and information we provide AND themselves feel frail or their own wellness is at risk, we strongly and compassionately ask you to contact someone you trust and tell them that you need more support than you are getting (personally, OR professionally). I want you to feel understood and better equipped to manage this frustrating world of mental healthcare, but please talk to anyone who will listen that you need more support that you have . . .even if you don’t trust anyone, trust a stranger on a help line because most have lived experience and they understand how to meet your needs and want to support you.
We’re going to be providing 5 content areas. One of are content areas is Family Psych Shop where we teach our listeners about the landscape of treatment in all its types and settings, everything from trauma work to electro-convulsive therapy, so our listeners can understand how the mental health professionals consider what type of patient is appropriate for what type of treatment. We want our listeners to understand different levels of care (such as hospitals versus residential versus day programming versus outpatient) ,and you don’t know that I just said, keep listening so you can know how to direct a loved one to the right level of care when he or she is in need (and you can advocate with your insurance company.
Another area is called Healthcare Toolkit where we review every resource in your arsenal to manage psychiatric illness in your family (things like Medicaid and Medicare, private insurance, Social Security benefits, employee assistance programs at work, private disability insurance, and many others.
A third area is called Shrink Rap, that’s R-A-P, a old hippie term for talk for you young listeners out there, we will be interviewing thought leaders and mental healthcare professionals who can inform listeners about the various treatment modalities, and evidence-based quality care around the country.
Our next area is called Parent Life Boat, a coaching area for parents struggling with emerging adult or adult children struggling to fledge because their disabilities are holding them back.
Our fifth are is called Caregiver Recovery where we will focus on how you, the caregiver, can achieve some peace and personal wellness while you are managing a loved with a psychiatric condition.
My vision is a mental health care world that invests in the caregiver to preserve its outcomes for the patient.
--a mental health care model where caregivers are trained to think and achieve like the psychiatrist or therapist.
-- a mental healthcare model that delivers the recovery of the life instead of just the medical management of a pathology.
--and mental health care model where quality-of-life is the measured outcome.
Join us next week when we
we’ll be talking candidly about the notion and realities of recovery from mental illness, and recovery for both patients from their illnesses AND caregivers from the wear and tear of managing the patient
and if you have feedback for us or want to register for our in-person workshops, log on to family psych consumer.com
Until next week, take care.