FirstPerson Services Launches New England Operations

Hopefully you’ve heard about the launch of FirstPerson Services this past January. It’s an exciting start to this new venture to strengthen person centered approaches in all levels and sectors of our human services systems in the Northeast; including many of our leading nonprofits.

FirstPerson Services are designed to support:
Agency Directors – Ensuring that your agency attends to your mission of person-centered care as a core value

Employees – Helping you design a smart approach to providing the right skill training to the right people

State Agencies – Facilitating the implementation of person centered system of care

Provider Agencies – Creating effective communication strategies and collaborative engagement between the various levels of a service delivery system. Strengthening recruitment and retention of valued employees
Credentialed Person-Centered Thinking (PCT) Facilitators – Helping to solve the problem of isolation, diminished passion and how to access the knowledge gained by the experience of others in different sectors and audiences

Parent Advocates and Self-Advocates – Providing assistance in self-managed services and active participation in service planning. Learning discovery processes to explore ways to introduce yourself and your loved ones to those who are paid to provide assistance in a way that helps them get an early understanding of personal gifts and value and how to keep what is important to you in mind in a balanced way.

Get in touch to learn more at:

http://www.firstpersonservices.com

 

Choosing Person Centered Thinking – David Foster Wallace’s Commencement Address

I was reminded today of the Commencement Address that David Foster Wallace’s gave at Kenyan College in 2005. In it he argues that we are hard-wired to be self centered and urged the graduates to discover moments in their everyday lives to adjust this “default setting” in order to be free:

“…Here is just one example of the total wrongness of something I tend to be automatically sure of: everything in my own immediate experience supports my deep belief that I am the absolute center of the universe; the realist, most vivid and important person in existence. We rarely think about this sort of natural, basic self-centeredness because it’s so socially repulsive. But it’s pretty much the same for all of us. It is our default setting, hard-wired into our boards at birth. Think about it: there is no experience you have had that you are not the absolute center of. The world as you experience it is there in front of YOU or behind YOU, to the left or right of YOU, on YOUR TV or YOUR monitor. And so on. Other people’s thoughts and feelings have to be communicated to you somehow, but your own are so immediate, urgent, real.

Please don’t worry that I’m getting ready to lecture you about compassion or other-directedness or all the so-called virtues. This is not a matter of virtue. It’s a matter of my choosing to do the work of somehow altering or getting free of my natural, hard-wired default setting which is to be deeply and literally self-centered and to see and interpret everything through this lens of self. People who can adjust their natural default setting this way are often described as being “well-adjusted”, which I suggest to you is not an accidental term.

Given the triumphant academic setting here, an obvious question is how much of this work of adjusting our default setting involves actual knowledge or intellect. This question gets very tricky. Probably the most dangerous thing about an academic education — least in my own case — is that it enables my tendency to over-intellectualize stuff, to get lost in abstract argument inside my head, instead of simply paying attention to what is going on right in front of me, paying attention to what is going on inside me…

…But most days, if you’re aware enough to give yourself a choice, you can choose to look differently at this fat, dead-eyed, over-made-up lady who just screamed at her kid in the checkout line. Maybe she’s not usually like this. Maybe she’s been up three straight nights holding the hand of a husband who is dying of bone cancer. Or maybe this very lady is the low- wage clerk at the motor vehicle department, who just yesterday helped your spouse resolve a horrific, infuriating, red-tape problem through some small act of bureaucratic kindness. Of course, none of this is likely, but it’s also not impossible. It just depends what you what to consider. If you’re automatically sure that you know what reality is, and you are operating on your default setting, then you, like me, probably won’t consider possibilities that aren’t annoying and miserable. But if you really learn how to pay attention, then you will know there are other options. It will actually be within your power to experience a crowded, hot, slow, consumer-hell type situation as not only meaningful, but sacred, on fire with the same force that made the stars: love, fellowship, the mystical oneness of all things deep down.

Not that that mystical stuff is necessarily true. The only thing that’s capital-T True is that you get to decide how you’re gonna try to see it. This, I submit, is the freedom of a real education, of learning how to be well-adjusted. You get to consciously decide what has meaning and what doesn’t. You get to decide what to worship…

…Because here’s something else that’s weird but true: in the day-to day trenches of adult life, there is actually no such thing as atheism. There is no such thing as not worshipping. Everybody worships. The only choice we get is what to worship…

…If you worship money and things, if they are where you tap real meaning in life, then you will never have enough, never feel you have enough. It’s the truth. Worship your body and beauty and sexual allure and you will always feel ugly. And when time and age start showing, you will die a million deaths before they finally grieve you. On one level, we all know this stuff already. It’s been codified as myths, proverbs, clichés, epigrams, parables; the skeleton of every great story. The whole trick is keeping the truth up front in daily consciousness.

Worship power, you will end up feeling weak and afraid, and you will need ever more power over others to numb you to your own fear. Worship your intellect, being seen as smart, you will end up feeling stupid, a fraud, always on the verge of being found out. But the insidious thing about these forms of worship is not that they’re evil or sinful, it’s that they’re unconscious. They are default settings.

They’re the kind of worship you just gradually slip into, day after day, getting more and more selective about what you see and how you measure value without ever being fully aware that that’s what you’re doing.

And the so-called real world will not discourage you from operating on your default settings, because the so-called real world of men and money and power hums merrily along in a pool of fear and anger and frustration and craving and worship of self. Our own present culture has harnessed these forces in ways that have yielded extraordinary wealth and comfort and personal freedom. The freedom all to be lords of our tiny skull-sized kingdoms, alone at the center of all creation. This kind of freedom has much to recommend it. But of course there are all different kinds of freedom, and the kind that is most precious you will not hear much talk about much in the great outside world of wanting and achieving and [unintelligible — sounds like “displayal”]. The really important kind of freedom involves attention and awareness and discipline, and being able truly to care about other people and to sacrifice for them over and over in myriad petty, unsexy ways every day.

That is real freedom. That is being educated, and understanding how to think. The alternative is unconsciousness, the default setting, the rat race, the constant gnawing sense of having had, and lost, some infinite thing…

Transcription of the 2005 Kenyon Commencement Address – May 21, 2005

Ableism Is Still With Us Long After Passage of the Americans With Disabilities Act

Whole Communities

This summer we celebrate the 26th anniversary of the passage of the Americans with Disabilities Act. This landmark legislation opened the doors of opportunity to millions of people who have since demonstrated that they are ready, willing and able to contribute in so many ways to enriching our society. We have all reaped the benefits of this legislation and discovered that our communities are stronger when everyone is given the chance to participate.

We won’t be truly honoring this anniversary, though, if we only look back at what has been accomplished without also taking into consideration what is yet to be overcome.

Unemployment and poverty rates are still unacceptably high for citizens with disabilities. And there continue to be disturbing incidents of discrimination against people with disabilities both in popular culture and in daily life.

I had a conversation once with a father of a daughter in her early 20s…

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Person Centered – It’s More Than Just Planning, It’s the Way We Think

Vermont has a long tradition of offering person centered planning options for those who receive services. Whether it involves Positive Futures Planning or Essential Lifestyle Planning many service coordinators around the state know how to convene “community circles” or “circles of support” enrolling many people across the spectrum of someone’s life experience to think creatively and broadly about how to move forward to achieve the vision of an active life in the community. All of these styles of planning are rooted in “person centered thinking”. Did you know that what really matters is not just person centered planning but, more importantly, the comprehensive practice of person centered thinking?  The best way to insure that people have self-directed lives within their communities as well as positive control over those lives within services is if those who are around them have person centered thinking skills. This is especially true for those who do the day to day work of direct care. There are many reasons why this is true.

Teaching, imbedding and supporting person centered thinking skills at all levels of our system will help to insure that there are a number of ways to get plans started. Also, updating plans and keeping them fresh takes less time and comes more naturally. It also improves the likelihood that plans will be acted on and positive changes will take place. Unfortunately it is too often the case that the best plans are designed only to be left by the wayside as the demands of daily life distract and undermine the good intentions of everyone involved.

Good planning is based in person centered thinking. It involves a set of values-based skills that help to see the person differently and to build learning over time so that supports are personalized. People have the experience of being at home rather than simply being “in a home”. These skills emphasize listening to what the person and their family wants and helps them lead their own process of planning. Managers and supervisors design roles and responsibilities that take into account both what is important for the person as well as what is important to them and ways to keep those interests in balance. People are recognized for their contributions; what people like and admire about them and what has been learned about the best ways to support them in experiencing good days. Staff are matched with people in a way that makes sense regarding the goals and activities that are of the highest value. A continuous quality improvement process acknowledges the need for continuous learning from the person at the center of services. The way that challenges are addressed also reflect a learning process: taking into account many different perspectives on what is working or not working and negotiating solutions on the basis of relationships that reflect equality and not “power over” those that we are all wanting to support in the best way possible.

Staff, administrators, family members and parents can all learn person centered thinking through workshops designed to introduce these basic set of skills and build networks of positive practice. There are resources on the web to learn more about person centered thinking:

YouTube for videos by Michael Smull. https://www.bing.com/videos/search?q=youtube%2c+michael+smull&qpvt=youtube%2c+michael+smull&FORM=VDRE

The other is the resource page offered by The Learning Community for Person Centered Practices (TLCPCP) http://www.learningcommunity.us/ Community provider agencies in our DD system in Vermont including Lamoille County Mental Health Services and Green Mountain Services plan to host 2-Day workshops on Person Centered Thinking (PCT) in next month.

Vermont’s Department for Disabilities, Aging & Independent Living (DAIL) will be offering training on Person Centered Counseling for staff at the Aging & Disability Resource Centers (ADRC) this summer. DAIL has chosen a train-the-trainer model and Tanya Richmond from Support Development Associates (www.sdaus.org) will be helping to build this team of instructors in Vermont. These courses will include review of many of the PCT skills that are covered in more detail in the 2-Day workshops. https://sites.google.com/site/vtoptionscounselingprogram/documents

So, You Want To Be Person Centered

So, you want to be person centered. That’s good! It means that, like most contemporary organizations that serve those in need, you are familiar with the terminology regarding this standard of excellence in the field and you are motivated to explore what it means. But what is it all about, anyway, and how is it different from what we’ve always done? Because, let’s face it, who hasn’t committed themselves to this field without a heartfelt belief that they want to make a positive difference in the lives that they touch? Isn’t everyone “person centered” then? Why don’t we start with what it isn’t:

  • It isn’t a variation on “the customer is always right”. – This standard customer service mantra is worthy, but conducting supports for a person in a manner that adheres to person centered thinking is not simply another version of superior customer service. It’s much, much more.
  • It isn’t “individualized” care plans. – Whether a nursing care plan, an individual education plan or an individual rehabilitation plan, everyone uses some system for bringing assessments of need down to some form of action planning that is specific to each person. It’s been a best practice for decades and in many cases is required by funders. However this doesn’t mean that the broader system around which service are provided has a culture that is person centered or that the path is cleared of obstacles for those who want to work to insure that the day-to-day experience of the person receiving services is personalized.
  • It isn’t an approach where the person always gets what they want. – There are restrictions on available resources in any system and the process of service delivery is always an effort around negotiation. Depicting person centered designs in this way risks the perception that it is an idealized or unrealistic way of thinking or, perhaps worse, not affordable.
  • It isn’t only person centered planning. – Organizations that have embarked on the journey to bring person centered thinking across all aspects of their work have determined that good planning alone is not enough. It is an important component but if a great plan is put into storage and the old dynamics remain when staff return to their assignments that frustrate or draw them away from their best intentions to be person centered then very little progress is made. In fact, from the perspective of the person receiving support it can be a devastating experience. Person centered planning encourages levels of self-disclosure and honesty from the person that is served as well as promises on the part of support staff. If the total organization is not in alignment with person centered thinking then the planning process could simply contribute to cynical discontent and withdrawal on the part of employees and the person who is supposed to be benefiting from the support system. More damage than good could result.

There are a core set of strategies and skills that make up what has come to be known as “person-centered thinking”. They have emerged over the past couple of decades as approaches that can be taught to and adopted by organizations that are committed to engaging with those that they serve in a manner that is dynamic, evolves over time and results in less of a transaction of service “delivery” and more as one that involves transformative engagement that leads to an experience by the person of being able to lead their lives free to make positive choices that result in meaning and fulfillment. It is dynamic because it includes a fundamental shift in the accepted power relationships with the person being served. Too often, the common practices of service “deliver” slip into concerns around compliance and control. On the other hand, if the way you engage the person you want to assist is structured in ways that validate their rights for power and control, then you can achieve a shift to “power with” the person and protect against devolving into the more common characteristic of professional service that assumes “power over” the person being supported. Person centered approaches evolve over time because the person evolves over time and so does the personnel and general environment within which the organization functions. For this reason, your commitment to being person centered must be long-term in nature and your discipline in being self-aware and willing to change must not falter.

We can use a thought experiment to get a better handle on person centered thinking. One way that we can frame what we mean by person centered approaches is to think of it as “personalization”. In the United Kingdom that is a common term used to describe the approach. Imagine that your job is to design an event or a journey for someone else that is personalized – let’s say a vacation, a wedding, a college search or even a career plan. What would be the very first thing that you would do and what would be the thing that you would return to so that your results will truly be personalized to your client? The answer, of course, is that you would ask questions; you would engage in an inquiry. If you Google “vacation planning” or “wedding planning” you’ll come up with descriptions of an inquiry that starts out very broad and goes very deep. What is important to you? What have you always dreamed of? What would you like to avoid? What do people say are your best qualities? What would you like to be known for? Are there any special accommodations needed? What have you found to be the best way to support you in these accommodations? Describe an experience where you felt most at peace or truly fulfilled; what were the main features of that experience? Have you had experiences where someone tried to help and it didn’t work out and you’d like to avoid that in the future? What things are “must haves”? What things are “like to haves”? These questions would be asked repeatedly before, during and after the engagement. Someone who is a professional planner – for weddings, for careers maps, for vacations – learns very early on that their success depends upon their adoption of the position of a student with their clientele being their teacher. And as with any good student, they meticulously take notes and organize them in a way that is useful for their work later on. These are also some of the main features of the person centered thinking strategies that an introductory workshop will teach participants.

Let’s look at some areas of your organization and see if they can be opened up to new person centered approaches.

  • Personal Values – Your organization seeks to have current and thorough clinical assessments of the people that you support. You are careful to insure that you are aware of the unique health care priorities for the person and that the places that the person travels are safe. You also make sure that there are good opportunities for socializing and making connections with other people. You do this because you know that a quality program insures that the things that are important FOR a person are addressed. You also do all of these things because they are imbedded into certification and licensure requirements. How familiar are you with what is uniquely important TO the person that you serve? Do you have a variety of sources and ways to find this out? If you learn it, how often and how well do you document it and make sure that every new care person in their life is aware of it…before they are assigned responsibility for care? Do you have systems in place to figure out how what is important to a person is put into balance with what is important for them?
  • Discovery And Listening To The Person That You Support – You have a daily schedule established for the person that you serve. This is another thing that is often required by regulation. Before the schedule was created did you know what contributes to a good day for that person? How about a bad day? Is this knowledge systematically shared with each person who is responsible for the daily schedule? Are schedules arranged to promote “good day” experiences? Do you know the unique routines and unique rituals that bring comfort to the person or that are a part of their heritage or family traditions? Is it shared? And what is shared with others when this person is first introduced? Is it what everyone likes and admires about them or is it their reputation, risk factors and the list of what is important for them? Are you having your staff collect daily information that is studied later for indicators of the unique communication style of the person and then used to create a collective description that is shared with everyone?
  • Everyday Learning – You hold department and team meetings and a regular part of the agenda is dedicated to addressing the challenges that some of the people that you serve are experiencing and thus challenging the capacities of the staff. Do you have standing practices or tools at hand that look at what is working or not working from multiple perspectives? Do those practices insure that everyone’s voice is heard? You have staff record information each day about their experiences. Is it designed in a way that is rich in information so that it can be used as a resource later on for learning about the person’s best support strategies, what is important to them, what brings them comfort or what works or doesn’t work as a support strategy?
  • Management and Supervision – You hire direct support professionals that end up spending the most time with the people that your organization serves. You make sure that they meet the basic qualifications for the job. Are their backgrounds, interests and style matched with what you know about the person that is being served? Are they clear about what is their core responsibilities, what is not their responsibility and, also, the areas where they can explore and try creative approaches in their work? Do these knowledgable staff get invited into service planning as a matter of policy?

A basic two-day workshop in Person Centered Thinking offers practical skills and tools that address all of these areas. The skills have been refined across many types of organizations serving many different people; older persons, people with behavioral health challenges and people who have intellectual disabilities, to name a few. They are in practice across the globe and a regular process of continuously refining their structure and application remains in place. In fact, if your organization becomes part of the worldwide network of organizations that bring person centered thinking into their core practice then you will be invited into this learning and refinement process. The goal of the workshop is to expose the participants to the basic skills and give everyone sufficient practice and comfort with the approaches so that they can describe them to colleagues and explore ways of putting them into place in their daily work. Some of the skills can be applied immediately without permission. Others will require approval and adoption by a supervisor. Still others may not be fully applied without changes in policy. This is where a commitment from the top leadership of an organization is essential. So, if you want to be person centered, bring this training into your organization and have people at all levels learn the basic skills, put systems into place to practice and build competencies and, finally, commit your organization to making these practices a matter of habit that will translate into full, respectful and meaningful lives to those that you support.

Two-day workshops are available through Bridges – Professional Development Center for Person Centered Values

Ableism Is Still With Us Long After Passage of the Americans With Disabilities Act

This summer we celebrate the 26th anniversary of the passage of the Americans with Disabilities Act. This landmark legislation opened the doors of opportunity to millions of people who have since demonstrated that they are ready, willing and able to contribute in so many ways to enriching our society. We have all reaped the benefits of this legislation and discovered that our communities are stronger when everyone is given the chance to participate.

We won’t be truly honoring this anniversary, though, if we only look back at what has been accomplished without also taking into consideration what is yet to be overcome.

Unemployment and poverty rates are still unacceptably high for citizens with disabilities. And there continue to be disturbing incidents of discrimination against people with disabilities both in popular culture and in daily life.

I had a conversation once with a father of a daughter in her early 20s who recently acquired an apartment in the downtown area of a major city. He told me that when word got out that it might be a location where other people with disabilities might choose to live, neighbors reacted and organized, declaring that they “didn’t want psychotic people walking around the neighborhood.”

This was said without any knowledge of who these prospective neighbors might be as individuals, only who they were as a category – the category of “disabled.” Numerous parents whose children have disabilities have told me of similar experiences. They have come to learn that their son or daughter is susceptible to being “profiled” in this way.

This is called “ableism,” and it is not tolerable.

It means that simply by being born into this category that we call “disabled,” even total strangers feel that they have permission to make declarations about where you might live. Laura Marshak, Claire Dandeneau, Fran Prezant and Nadene L’Amoreaux wrote in a publication called “The School Counselor’s Guide to Helping Students with Disabilities” that “(s)imilar to many of the assumptions underlying the medical model of disability amongst many clinicians, the “ableist” societal world-view is that the able-bodied are the norm in society, and that people who have disabilities must either strive to become that norm or should keep their distance from able-bodied people. A disability is thus, inherently, a “bad” thing that must be overcome. The ableist worldview holds that disability is an error, a mistake, or a failing, rather than a simple consequence of human diversity, akin to race, ethnicity, sexual orientation or gender”.

This phenomenon of one group of people feeling empowered to determine the fate of another group of people is precisely what the framers of the ADA were cognizant of when they stated that “disability is a natural part of the human experience and in no way diminishes the right of individuals to live independently, enjoy self-determination, make choices, contribute to society, pursue meaningful careers, and enjoy full inclusion and integration in the economic, political, social, cultural, and educational mainstream of American society.”

The good news is that there are actions we can take to mitigate these dangerous attitudes. We can create positive change and eliminate stereotypes by phasing out segregated classrooms and sheltered work and congregate activities that reinforce popular stereotypes. Professionals encourage and support people with disabilities to exercise their own voice and declare their constitutional rights to life liberty and the pursuit of happiness.

People with disabilities and their families can make the decision to choose inclusion – every person is born included – and take their rightful places as participating, contributing members of their communities. Retreating into so-called “intentional communities” cannot be the answer. While they are often designed with a view to safety they actually reinforce concepts of “the other” that are the foundation of ableism and thus magnify the dangers to us all. And the evidence of that danger surrounds us. We live in a time when a major party candidate can mimic a reporter with disabilities and receive roaring approval from a stadium crowd; a time when, in this ADA anniversary month a Vermont man is given a 3-month prison sentence for poisoning a child with disabilities by pouring vodka into his feeding tube; when a man goes on a rampage in Tokyo, Japan stabbing 19 people to death saying later “It’s better that the disabled disappear”.

Wolf Wolfensberger saw these phenomena as interconnected and gave it the name “deathmaking”.

Stigma and stereotypes run deep. It is not tolerable to continue to discriminate and marginalize whole groups of people. We all suffer the consequences. Let’s speak bravely and truthfully about this aspect of our society. Acknowledging the existence of ableism in all of its ugly incarnations is the beginning of the change that is needed. Let’s honor the work of those who created the ADA by working to realize their vision of a whole society.

 

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