Slide 1
“Consumers with Lived Experience: Critical Partners in the Mental Health System of Care”  Brought to you by the Café TA center. 

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Less than a decade ago, the New Freedom Commissions report “Achieving the Promise” affirmed that the current system of care must undergo a fundamental transformation in order to realize “a future when all people with mental illness will recover.” A series of recommendations were provided to guide “system transformation” including the specific recommendation for establishing the role of consumers and family members in all levels of policy development and service delivery.

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This set the stage to begin consumer and family driven care and to layer into that, youth guided care.  It provided a shift in service development, implementation and evaluation.  And it inspired a new energy to the consumer movement. 

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Consumer providers are individuals with mental illness who are trained to use their experiences to provide services and support to others with mental illness in a mental health service delivery setting.  They are called by several names including Consumer Provider, Consumer Support Partner, Consumer Advocate, Peer Partner and you may have heard other names for them as well. 

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What is “Lived Experience.”  Well, lived experience is used to characterized consumers whose experiences are likely to match up to individuals currently receiving services.  This can be based upon different experiences such as public versus private services, voluntary versus involuntary care, diagnosis, culture, and many others. 

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Among persons with serious mental illness, unemployment rates are unjustifiably high. Compared to individuals with other types of disabilities whose, unemployment rate is around 67%, the unemployment rate for people with psychiatric disabilities is 85% to 92%

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Many trends have stated to emerge in supporting the employment of consumer providers. National efforts to promote consumer employment in general became an emerging focus over the past decade.  We’ve seen signs of  Supported employment, Supported education, improvement in the Work environment, and Employee assistance.  All of these things are geared towards to making the employment of the consumer easier, more successful and to help them become more productive and self sufficient.

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The practice of consumers working in the system to expand the capacity of the workforce in mental health has primarily been dependent upon the unique partnerships that are necessary between states, consumers and local stakeholders and the policies and practices to support consumer employment. 

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We’ve seen many service trends emerging over the years.  Primarily in the beginning, consumers were seen as recipients, they were someone to be provided care to.  And then consumers became involved in planning services not only for themselves, but for other consumers as well.  Soon consumers were seen as evaluators.  They started out filling out forms, satisfaction surveys, and providing input on how well they thought services were going.  And then they were being hired to help give critical input as to how programs, policies and services were impacting their population.  And finally, we’re where consumers are providers.  Consumers are seen as an integral part of the workforce to provide critical services to others just like them who are receiving mental health care. 

Slide 10
We’ve seen over the years several models of employing consumers with lived experience.  This has occurred in private practice, Hospitals, Peer to Peer Centers, Community mental health, State mental health, as well as Federal Programs.  We have seen programs go out, and recruit, and hire, consumers with lived experience so that they can work directly with other consumers within that practice. 

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We know that there are many fundamentals that can contribute to the success of any type of employment program that hires and supports consumers with lived experience.  This includes making sure it’s consumer driven, that there is authentic population representation, that we understand the benefits from all sides, that there is adequate support and the program is actually ready to engage in this kind of an endeavor. 

Slide 12
First of all, Consumer Driven.  You know, consumers have the primary decision-making role regarding the mental health and related care that is offered and the care received.  The consumer voice is paramount in determining all aspects of care for consumers in the community, state, and nation.  And finally, consumer voice must be present and fully represented both collectively and individually with regard to all aspects of service delivery from planning to implementation to evaluation to research. 

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The authentic voice is the voice of those originating from the population served by the program; the voice of individuals whose lives will be directly impacted by the outcomes of program planning, development, implementation and evaluation. 

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There are many benefits to the system when employing consumer providers. They serve as recovery role models for consumers.  They can represent consumer needs in the service system helping them understand exactly what it is that is needed.  They are the reality check.  It broadens the capacity of the system to be consumer-driven and culturally competent.  It provides information and motivation for staff and peers.  They can be a mentor for both peers and clients.  And they fill gaps and augment for services for clients.  They serves as liaison between client and staff populations.  Often, consumers would rather talk to another consumer than to another professional. 

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Benefit to Consumers.  Well definitely it contributes to a personal recovery.  It refutes biases and stigmas regarding the ability of persons with lived experience to lead independent, productive lives.  It expands work experience.  It helps the get a job, keep a job and be able to document that on a resume.  It builds personal resilience and capacity and certainly promotes independence. 

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System Transformation is built on an open dialog and factual information.  It’s reality “checked” at each level.  It reflects the authentic voice and it enhances system responsiveness while maximizing dollars.  System transformation is now occurring in virtually every single element of human services across the country.  Systems are scrambling to find different, better, and more efficient ways of serving their population. 

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There are several element that are critical to the success of any type of consumer provider program.  We need to have supports that are flexible, predictable, reactive, above the norm, sensitive, and maintain a high level of confidentiality. 

Slide 18
There are many Federal Laws that protect individuals with disabilities and this does carry over to individuals with mental illness. The Americans with Disabilities Act, often known as the ADA, The Rehabilitation Act, The Workforce Investment Act, The Vietnam Era Veterans’ Readjustment Assistance Act, and The Civil Service Reform Act.  Each of these laws contribute to our society’s ability and understanding of understanding of hiring and supporting people with disabilities and allowing them to carry on with jobs and lead independent lives. 

Slide 19
Accommodations are big issue with many of these laws.  Many of the laws mandate accommodations but really when you look it, it’s oftend less than you would expect.  Many of these are just common sense approaches.  When you are hiring a consumer you’re going to have to make some types of accommodations to make sure they have the ability to do the job.  It does force some creative, out-of-the box thinking but it needs to be systemic.  It can’t be at one level.  The accommodation needs to spread throughout the program.   And this has to occur for the success of the program as well as the consumer provider. 

Slide 20
Some samples of some accommodations would be:  non-traditional working hours.  If a consumer provider is working with other consumers, it makes sense that they have to be available for hours that are not 8-5.  Some consumers may need to talk at 8:30 or 9 o’clock at night.  Maybe they are going to work from home while they are working evenings or on weekends.  Some consumer providers may need transportation options.  For example, maybe they don’t drive a car, maybe they need bus passes, maybe they need the ability to be able to travel throughout the town or throughout the community on public transportation.  And some of the consumer providers may need coaching, a mentor, or somebody who can spend time with them on a regular, predictable basis helping them identify, strengthen their skills and encouraging them to keep doing their job. 

Slide 21
Programs have to be ready in order to successfully employ a consumer provider.  Some of the indicators that you might see in a program that is ready is that they welcome qualified job applicants, they value diversity, they includes health care that treats mental illness, they promote and support employee health-wellness and/or work-life balances.  They train managers and front-line supervisors on the best ways to engage and support individuals with mental health needs.  And they safeguards the confidentiality of the consumer. 

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And other readiness indicators would be providing appropriate referral resources to assist managers and employees.  To support employees who seek treatment, including planning for return to work.  Ensuring exit with dignity as a priority.  And providing all-employee communication that promote an accepting, anti-stigmatizing, anti-discriminating climate in the workplace. 

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So now we see we that we have the evolution of the program.  We plan and prepare; we recruit and hire, train and support, and do everything we can to retain the individual and sustain the effort. 

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In the planning phase, they need to listen to the service population, gather consumers who are served by the program together and listen to what it is they have to say.  Make sure you are identify the authentic voice, that voice of people who are actually receiving services and that those are the ones you listen to.  Assess the work readiness.  Look and see if there is a supportive environment.  If there is not, you need to create one.  Develop position descriptions that reflect the true intent of the position.  And create a strategic plan, a plan that guides you through all the processes necessary to plan implement evaluate and improve a consumer provider program. 

Slide 25
Consumers have many roles and they should participate as equal partners in gathering information from the service population.  They should go to other consumers and gather he information about what they would like to see and that particular position.  They should help assess the work place.  It is through their eyes that we can get the most important information that will guide us on what we need to do to make improvements.  They should also be integral in training the staff.  They should not only co-train, they should help write the trainings.  They need to develop the position, it’s their position.  This position is one that they are going to create and they are going to depend upon.  And then they should help create the job descriptions, looking very closely at what the skills are, what the job would actually do, and how they would evaluate that job.  Consumers have many roles and their role should be the dominant role whenever developing a consumer partner program. 

Slide 26
Recruitment and Hiring.  In the recruitment and hiring process, it’s just like any other employee, you have to have a consistent process that you apply to everybody who applies.  They have to have outreach to an authentic population representation, adhere to federal and state laws and ensure that there is a supported interview process.

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To do this, Consumers are equal partners in developing recruitment outreach plans, developing advertising the job opening, serving on the application review committees, and participating in the interview and selection process itself.

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So training and Support certainly requires a well outlined expectations and accommodations.  Training should provides ongoing training, mentoring, and coaching, and establish an agreed upon “way of work.”  In addition, we should train and orient to the job and train other staff as well, not just the individual that we are hiring and create an up front evaluation process so that everyone knows that as we work through training and support they know what’s expected of them, they know what the mark is. 

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Consumers are equal partners in this process through the Training, Coaching, the Mentoring, Problem prevention and resolution, and Developing and implementing the job description. 

Slide 30
Retention.  How do we develop a program and then keep the good people that we invest all the time to train, prepare and integrate into our program.  One of the best ways to do that is to follow a quality improvement process, look at where the program is lacking, look at the areas where there’s gaps and improve that.  Create and monitoring benchmarks, know what a good job is, don’t just pretend that what you are doing is meeting the mark, know what the mark is.  Recognize consumer efforts and accomplishments.  It’s important to not only reward all staff, but it’s critically important to reward consumers for the work that they are doing as well, both those that volunteer to assist in developing the program as well as those who take the jobs.  Develop a career ladder.  Often there’s no place for an individual to go once they are hired on and they stay the same.  Once they develop expertise and they become better and better at their job, they look around and they would like to see a way for them to be promoted as well.  And that leads us to clone and promote.  Find more and more consumers, hire them and promote them as they develop their expertise. 

Slide 31
The consumers can participate as equal partners in this process by developing the quality improvement process, creating and monitoring the benchmarks, developing a career ladder, celebrating those success and doing continuous outreach – looking for leaders, looking for emerging leaders, identify ways to bring them in, train them, utilize them as volunteers, and maybe eventually get them hired with the program. 

Slide 32
There’s challenges in any program, any organization that’s hiring, supervising individuals not matter who they are.  But specifically to the consumer provider position, there’s an impact of their lived experience, there could be some non-consumer staff concerns, and there could be some organization issues that cause challenges or barriers to a successful employment program.  Let’s talk a little bit about each of these. 

Slide 33
Well not everyone will have Impact of Lived Experience that will carry over into their work life, but sometimes experience can make the work difficult through reminders of traumatic experiences that might have occurred or discrimination or stigma.  Sometimes mental health care may interfere with work schedules because after all these are consumers and they have their own mental health care to take care of as well.  They may have a lack of tradition education or specialized training.  We do understand that fewer people with mental illness graduate from secondary schools so they may not have that traditional education of a professional.  They may have limited interview and job experience and through that a lack of work confidence.  They could as well be very fearful of judgment, afraid of being judged for having mental illness or not being able to do the job.  And of course many of the m are on medication and they may have do deal with medication side effects, especially after their medication has been changed. 

Slide 34
Misperceptions.  Some of the Misperceptions that we see floating around include that consumers cannot work, and that Consumers are not providers or professionals, I mean after all, they didn’t go to school to learn to be a consumer provider.  And there seems to be a misperception that consumers will relapse from all of the stress. 

Slide 35
Now non-Consumer Staff may have hidden biases, biases they didn’t even know that they had.  They may also be non believers in the position itself, and they may have concerns that consumers will do more harm that good since they aren’t professionals like them.  They could also be afraid of being replaced.  It is very possible that they are worried that with budget cuts that many programs are experiencing today that their job will be eliminated and they will replaced with a consumer staff person. 

Slide 36
The organization or program itself may have policies issues that may need to be addressed.  They may have confidentiality and other regulatory demands that make hiring a non-professional difficult.  They may have policies that do not support potentially needed accommodations.  And they may have pay grades or job classes that prohibit hiring of consumers into service direct positions. 

Slide 37
So what are we going to do about these challenges?  Well, certainly doing initial and regular assessments of readiness and support will help the program be ready for a consumer provider employee.  It’s important to implement all staff training on the position, the support the individuals might need, cultural competency, and anything else that could enhance the capacity of the staff, the program and the consumer to all work collaboratively.  It’s necessary to develop consistent protocol, protocol that is predictable but has enough flexibility in it so that it can be adjusted whenever it’s necessary.  And then we need to work around problems with very creative solutions, not allowing them to get in the way of the intent of the program. 

Slide 38
Some of the other ways of resolving challenges could include maintaining an open communication, really making sure that it’s a safe and secure way for folks to talk about the way they feel about position, the employees, the workers, the environment, or anything else that might inhibit it’s success.  We need to promote conflict and problem prevention before it becomes a problem and this can be done as well with open communication.  Programs need to offer orientation and repetitive training helping people learn over and over again what it is that they need to do.  When new policies come out, it’s really important that this be fed into all the staff at the same time and that repetitive training be done over and over again to make sure that every single individual understands.  We need to change policy to reflect a consumer driven philosophy.  Many of the policies that we have are really geared towards professionals and not that the consumer provider is not a professional, but their professionalism is driven by a consumer-driven philosophy, so we need to make sure that our polices reflect that.  An example might be that you would have a policy that allows accommodations to enable a consumer provider to miss a half a day of work once a week and they make that day up in the evenings or at another time that is acceptable.  This would allow them to attend to their own personal mental health needs during that half hour.  It would allow them to have a predictable time to make appointments.  And it’s really important that you create a consumer employment development committee of staff and consumers; and this can kind of be a think tank where folks get together and talk about what is happening, talk about what needs to be changed and then begin a strategy session to develop ways that they can make the shifts and make the changes that will keep the program moving forward. 

Slide 39
Well we’ve certainly talked about a lot of different things, but I guess there remains an elephant in the room.  Consumers report that there’s often an underlying feeling that evolves from what is not said.  Maybe signs of discomfort from other people when they discuss their mental illness or feeling like they’ve been passed over for a promotion or pressure when their symptoms are not under control. 

Slide 40
These feelings lead all lead to an underlying bias that needs to be addressed.  We can address those biases through training, Ongoing dialog, certainly that open communication is critical, making sure that all staff are networking together, and putting together a steering committees that is made up of staff and consumers, having a zero tolerance policy for any type of discrimination, making sure that there is consequences when individuals show signs of biases, such as rolling their eyes, using slang terms to refer to an individual with a mental illness, there has to be zero tolerance as well as consequences for those types of behaviors.  And when necessary, there has to be a professional intervention, maybe bring outside trainers to talk about some of the issues, work with individuals who have biases, individuals who are discriminatory and make sure the stigma is not an underlying cause of folks quitting the program. 

Slide 41
Well, we certainly appreciate you spending time with us to learn more about the employment of consumers with lived experience.   You know, Consumer providers are on the rise.  We’re hearing more and more about programs all across the country and we know that consumer driven care will become more the norm.  Policies will emerge that will support the types of consumer driven care that the President’s Commission had envisioned.  The time really is now to join others in establishing positions and promoting opportunity.  If you have one position, make another one.  If you don’t have any, call someone who does, find out how they did it and join in with them.  Stay on top of emerging practices over the next year or so we are going to see credentialing and licensing consumer providers or whatever you want to call them, but we will be able to see new ways of doing business with consumer providers and integrating them into our programs and actually measuring the impact of their work.  And certainly we need to advise everyone as we do ourselves, we need to walk the walk…  IT’s time.  We've been talking for year about how important it is to have the involvement of consumers.  Let’s walk the walk and start putting them in the position to start driving the services delivery system. 

Slide 42
Again, we want to thank you from the Café TA Center for spending some time with us today.  We’re supported by SAMHSA to operate one of its five national technical assistance centers.  We provide technical assistance, training, and resources to facilitate the restructuring of the mental health system through effective consumer directed approaches.  Please come and visit our website, learn more about the resources that we have and the information that we have provided.  And we’d also like to encourage you to leave a question or comment on the page today and come back and follow up on that.  We hope  to engage folks in a conversation and share and learn from one another.   So until next time, thanks again very much, we’ll be talking to you all soon.