SLIDES FOR THIS PRESENTATION CAN BE FOUND HERE.
I’ve done a lot of keynotes. I’ve done even more public presentations, conference workshops, trainings, and individual person-centered plans. Last check I was well over 500 in total of these opportunities to spread the message of stewardship I bring to you today. Typically my keynotes are written many weeks in advance, but I found myself just starting this one about a week ago. I lost my mom on September 21st. So I’ve been a little distracted from, well, just about everything, including preparing for today. But the truth is, even if I had today’s entire address written already, I probably would’ve rewritten it because of the impact these weeks have had on my outlook on life. Because when we lose someone, we reflect, don’t we, on the impact that person had on our lives.
My Mom was in a nursing home for 3 and a half years as Alzheimers slowly took her body and mind away from us. In those years there were team meetings, care plans, reports, exams, tests, OT, PT, speech therapy, psychiatrists, neurologists, 4 roommates and countless staff who took care of her. If I were tested on all of their names and titles I’d fail miserably, but I do remember every single face and the role they played. I remember every single one of them. I remember how they acted, whether they were kind. I remember if they sat at the meeting table or brushed Mom’s hair.
And I definitely remember how they made me feel. Some of them cried with me when we lost Mom. Some of them I hope to never see again. I remember the social worker; a nice enough lady, I guess, but when I had a concern she never once responded to me when I brought it to her. I learned not to trust the social worker and to go to someone else. I remember the caregiver who snapped at my mom about spilling her drink on her shirt right after she had changed her and threatening to leave her in her wet clothes. I remember the repeated trauma I felt each time I had to tell someone else what happened as they investigated my complaint. I remember the woman who was the only one Mom would eat dinner for toward the end because she took her time and chatted with her even after Mom could no longer respond. She was one of the ones who cried with us. In the last few weeks, I met with the funeral director and the events person at the restaurant where we held the luncheon after the celebration of life. I remember those conversations vividly.
Whether these folks gave me faith or instilled fear in the systems of care I relied on for my mom, each was important. Each left an impression. Each laid the groundwork for my future relationships with those in the same positions.
This is what I’m here today to help you understand: your role is IMPORTANT in the lives of those you support. You hold a piece of every person’s story. This is not just in the context of your work, and we’re going to talk about that. Interactions and interconnections define the paths we take and the things we all experience. They shape who we are. They are part of the HUMAN condition.
Sadly, in my opinion, based on personal and professional experience working with hundreds of families, the “human condition” is last on the list of priorities within the behemoth that has become systems of support for people with disabilities in our society.
Systems of support as we know them now are still archaic in how they operate. We are still in the early part of the industrialization of human services, despite how far we’ve come with deinstitutionalization, educational inclusion, community awareness, person-centered philosophies, and most of all a workforce of committed, compassionate, hard-working people like yourselves here today.
Systems continue to be based on economics, institutionalized operations, medical models of care… all of that dominates our decision-making, and with that the mission becomes watered down to “keep them alive, fed, relatively clean, mostly safe, and take them out into the community once in a while.”
It’s important to say here before I go on, that none of this is the fault of anyone here; these seeds were planted decades ago or even longer. The rise of civil societies was when we see the earliest evidence of systemization that was well-intentioned and did indeed improve our lives. In those processes, though, we gave up customs and traditions that began to seem archaic in the face of new tools and technology, and we began to value those new tools and gadgets more than we valued each other and our communities. Industrialization allowed us to do more and more things on our own and we reduced our reliance on each other to achieve our goals. Systems prevail everywhere, and we’ve lost of our sense of human connection. There are lots of people who have built their professions on teaching how to reconnect and rebuild community, but even that is an industry!
We have built this behemoth in the name of mass production for efficiency and our bottom lines, and now we are taking care of the system in the name of progress – what’s glaringly and consistently absent is what I often discuss using the term “stewardship of souls.”
We have forgotten in every aspect of society that which differentiates us from anything we build. In systems of care, whether it’s my Mom’s nursing home or my son’s residential and day programs (I’ll introduce him shortly), consideration of joy and happiness, relationships, opportunities for personal growth and fulfilling experiences that are part of overall well-being is rarely part of the conversation. Yet these are the very things that are meaningful in our lives. These are the things that steward our souls.
And in your roles, you have the power and the responsibility as a fellow human to steward the souls of those you support. Not as a case manager, or a fiscal intermediary, or a direct care worker – as a fellow human.
If you’ve ever heard me speak or if you look on my website at my presentation library, you’ll know that I often bring up the Principle of Normalization, a precursor to Social Role Valorization that some here may have heard of or studied. In his book, Wolf Wolfensburger defines this principle as “making available to all people with disabilities patterns of life and conditions of everyday living which are as close as possible to the regular circumstances and ways of life or society.”
The reason I love to bring this into my discussions so often is because it always provides that sense of common bonds we all share; it closes a gap in humanity that I believe leads us to “othering” those we support.
So let’s unpack this a bit. What are some of the patterns and conditions of everyday living?
(having a job we choose, making plans with friends, attending things like exercise classes or paint night, pursuing things we enjoy, choosing when to wake up and go to bed)
People with disabilities have very few of these freedoms – if they did, there wouldn’t be a need to develop principles like this.
I want to simplify the concepts within the Principle of Normalization by encouraging you to pause for a moment before you make a decision about supports and ask yourself “what would I do” or “what would I want.” I guarantee you that you will start to shift your thinking. If you apply the idea of “what would I do and what would I want” then it becomes easier to think of the regular circumstances and ways of life or society and apply those to the way you support.
One of the most important things I think of when I think of the regular ways of life or society is my freedom to connect with others and how those connections make me feel; a sense of belonging is such an important part of the human condition. How do you and I connect with others? When we meet someone new, we typically have the freedom to introduce ourselves or to choose not to; to choose what we tell and choose what we keep private. That’s a regular circumstance of life or society that we enjoy.
People with disabilities usually do not enjoy that freedom. Instead, systems reports become their introduction, often before they can even show up. Think about this in the context of the principle: if you were introduced to others before you even walked into the room and had no control over what was said, as those you support often are, and the introduction only discussed all of your faults, the things you couldn’t do and what kind of behavior to expect from you, how do you think you would be received?
When we steward the system instead of the soul, it is less messy because our framework is that there is something we need to fix and manage. We find all the reasons that they should not have all the same patterns and conditions: justifications are made like “we need to keep them safe” or “they don’t want those things” or “we don’t have the money to support them because they need so much.” I challenge you to name someone without disabilities who does anything without support. We need teachers to teach our yoga classes, colleagues to complete projects, supervisors to train us, mechanics to keep our cars on the road. We need our parents when we are children and our partners when we are adults.
Every single one of us is reliant on others in every aspect of our lives. It is our interconnectedness that is the most important condition of everyday life, the most important condition of our humanity. We are much more alike than we are different. And when we apply that lens, when we apply the principle of normalization and ask ourselves “what would I want and what would I do” then we can begin to connect with our shared humanity and we begin to steward souls because we connect at that level. When you become a steward of souls, you begin to find new meaning in the role you play.
The best way to talk about the impact of your role as systems providers, whether you’re a Fiscal Intermediary, Manager, or Direct Care Professional, is through the use of stories that illustrate contrast between the language of humanity and that of the system. I have a couple, and I’ll start with excerpts from a paper published in 1989 by John O’Brien and Beth Mount, 2 of the most respected thought leaders in the disability world.
The preparation of this paper, titled “Telling New Stories: the search for capacity among people with severe handicaps, was supported through a subcontract with the University of Minnesota for the Research and Training Center on Community Living.
Here are 2 stories of the same man: Mr. Davis, a man with disabilities who receives supports.
Story 1: Mr. Davis has a mental age of 3 years, 2 months. IQ = 18.
Severe impairment of adaptive behavior, severe range of
mental retardation. Becomes agitated and out of control.
Takes [medicines] for psychosis.
Severely limited verbal ability; inability to comprehend
abstract concepts. Learns through imitation. Has learned to
unlock the Coke machine and restock it, and to crank a
power mower and operate it.
His family is uncooperative. They break appointments
and do not follow through on behavior management plans.
Story 2: Ed lives with his mother and sister. Ten of his relatives live near by and they visit back and forth frequently. Ed is at home in his neighborhood. He visits extended family members and neighbors daily. He goes to local stores with his sisters and helps with shopping. He goes to church.
Ed dresses neatly, is usually friendly, and shakes hands with people when he meets them. He is a very big man, with limited ability to speak. When he gets frustrated and upset he cusses and “talks” to himself in a loud voice. These characteristics often frighten other people who do not know him well. He has been excluded from the work activity center because he acts “out of control” there. Ed likes people and enjoys visiting in the neighborhood. He loves music, dancing, and sweeping. He likes loading vending machines and operating mechanical equipment. He likes to go shopping. He likes to cook for himself and for other people and can fix several meals on the stove at home. He likes to hang clothes and bring them in off the line. He likes to stack cord wood and help people move furniture. He prefers tasks that require strength and a lot of large muscle movement.
Next, I’m going to share a more personal story.
This is my son Nicky. Nicky is going to be 32 next month. The trending term for folks like him is “profound autism. I present to you 2 descriptions about Nicky.
Description 1: Nicky has profound autism, is non-verbal and has severe aggressive behaviors. He is on multiple medications and has a history of seizures. Anyone who works with Nicky has to be trained in de-escalation and restraint procedures. Nicky knows when someone is afraid of him, so they shouldn’t react if he aggresses. He needs 2:1 support in the community. He is a property destroyer. He is best with a consistent schedule.
Description 2: Nicky is really smart, so remember that. He loves to be neat and clean. He’s very in tune to other people’s feelings and wants everyone to be happy. He will go out of his way to try to make you smile. He loves tickling and being chased and he teaches these things to his caregivers. He loves YouTube. He’s an expert at finding Disney videos. He loves to eat out, and everybody knows him at his favorite restaurants.
Which story do you think I wrote?
Answer: the first one. The second one was provided by one of Nicky’s long-time staff members, who is never invited to team meetings, by the way – another system standard practice.
I bring forward this example because it not only illustrates the impact of language like the stories about Mr. Davis, it also illustrates one of the tragedies of the system-centered world we live in. Families like mine are conditioned to believe that we also need to change the way we speak about our loved ones, because that’s how we have a voice at the table. We adopt the language of disability, inability, behavior and procedures thinking that will align us with the professionals, and that somehow that will make us seem more important. More informed. Somehow stronger. And that our loved ones will be better served.
This is another tragic consequence of stewarding the system: people with disabilities and their families have redefined patterns of everyday living for themselves based on control and institutionalized approaches. Their sense of the patterns and conditions of everyday life is being told where to go and what to do, not having any choice in who can come into their spaces and being dependent on multiple people every day. Because the systems of care have created the definition of regular patterns of life for people with disabilities so they can maintain budgets and control, because families are afraid to speak about their loved one’s dreams and capacities for fear of losing supports, nobody is stewarding the soul. We have all lost our ability to place humanity first.
I know this is a lot to take in. I know I have talked a lot about the system-centered world we live in and the damage it has caused. I also know I’m preaching to the choir. But we need to keep having vulnerable conversations like this where we confront those damages and use the power of humanity, that I believe has far more strength than any system, to create change that we know we must. I sat at dinner last night with the leaders who have brought us together here for this conference and I heard the frustration in the voices of those around me as they told stories of the challenges they face to bring dignity and opportunity to people. It’s an echo of what I have both heard in my work around the country and lived myself.
But I believe change is possible, that we can as professionals and as people committed to improving lives overcome the behemoth system that has made caring an obstacle to caregiving.
It’s always my intention when I speak to groups that after I bring forward the ideas I want to share, I offer up strategies – action items for you to take with you and implement in your professional lives both individually and as an organization.
I fully expect you to memorize each of these and put them all into place by Friday!
Strategy 1: Ask more questions. Don’t stop with the systems reports!
We just heard a couple of stories that illustrates the importance of learning about a person from them directly and/or from those who know and love them. What’s the strategy? Ask more questions. Who is in the person’s life? What do they enjoy doing? What do they hate doing? What do they do really well? There’s a difference between doing something really well, by the way, and enjoying something. I’ve got a story for that too:
I worked with a young man named Chris who has autism. When I met Chris he had just received the prestigious award Employee of the Month at the college campus cafeteria where he had been working for about a year. His mom was so excited to tell me about it when I met with her and Chris. She gushed about how everyone at the cafeteria loved Chris. I asked Chris what he thought about the award and he looked at his Mom then said “I’m happy” – but I wasn’t convinced, so I asked 2 more questions. I said “what does a good day look like for you, Chris?” He answered “when I get to hang out with my girlfriend and play video games.” Then I asked him “what does a bad day look like for you?” His answer was “when I have to go to work at the cafeteria.” His Mom was shocked. Everyone at that job loved Chris, but did anyone every ask Chris if he loved the job?
When we do not engage those we support and their natural circles of support, if we don’t ask more questions and if we don’t go past the reports, are we stewarding the system or are we stewarding the soul?
Another part of this strategy is to check in once in a while – make it a habit and keep asking questions…because stories change! Let’s check back in with that Principle of Normalization and patterns of everyday life…
How many of us change jobs, change relationships, learn new things during our adulthood? All of us! It’s no different for those with disabilities. In fact, I would suggest that those we support are far more experienced in change than the rest of us.
When the systems reports tell the story and we don’t keep asking questions, outdated information can haunt the person and have a direct effect on not just supports but perceptions.
My son Nicky has a medical & behavioral history going back years, that is still mentioned in parts of his ISP but have nothing to do at all with who he is now. My own history includes the use of Ativan, an anti-anxiety medication which on paper might suggest to you that I have a mental health history; the truth is that I was on Ativan for 2 months 16 years ago when my son had to be placed in a psych unit. I was overwhelmed. Look at me now! I’m a fun, relatively attractive, slightly cocky aging woman with a full life who has learned a LOT since that short stint on Ativan!
The practical point I’m trying to make is that as the people you support have more experiences, their likes and dislikes, their skills and capacities, even their desires and their dreams will change and that should change how supports look.
How else can we learn more about the soul? Find them or their loved ones on Facebook and learn what’s important to them. Look at their photos and see what makes them smile. Social media is now a normalized way of getting to know someone. It’s responsible- not irresponsible or inappropriate- to use different ways to get to know others. Talk about a new pattern and condition of everyday life now! Come on, you know you do it. Don’t make it weird. I welcome people who would like to get know me and my son, that’s why I put stuff on my social media. What’s that slogan we all grew up with? “The more you know.”
The more questions we ask, the more we get to know someone, the better we can support them and the more equipped we are to make decisions about supports that, if we’re going to be honest, steward both the system and the soul. It’s not rocket science. Ask more questions.
Next strategy: Check in with yourself. Monitor your own biases.
Let’s talk about this because this statement may feel uncomfortable, but like many other things it’s simply part of who we are as humans.
What are some examples of personal biases? Here are a few:
- Being a parent; once that happens, the tendency grows stronger to parent someone you support – making value or safety decisions because you wouldn’t allow your child to do something. We often infantilize those we support, making them childlike and applying a sense of protection that is inappropriate for an adult. A friend of mine who is a group home manager recently told me about woman in her group home who wanted to bleach her hair. My friend has been through my trainings, and decided to approach this using the principle of normalization – she asked herself what she would want. Rather than simply saying no because YIKES – that’s not a great look, right? My friend decided to talk to the woman about exactly what the process involved and what it would look like. The woman insisted she still wanted to do it, so my friend set aside her own sense of protection and concern that came naturally and they did it. I will not comment further on the outcome of this young woman’s decision, but it was her own and she loved it. My friend is proud to tell this story of how she stewarded that woman’s soul.
- Values decisions: things like
- thinking a person we support shouldn’t be allowed to have sexual relationships because they’re not married or you don’t think they’re capable or they can’t handle it.
- Thinking a person shouldn’t go to a heavy metal concert because you believe that music is evil or may be a poor influence.
- Not supporting a person going to a rally to support someone or some cause that you don’t support.
If you hear yourself inserting your own values or biases, stop and check in with yourself. Remind yourself that this is not about you. Take the time to ask more questions so you better understand why a request supports the person.
Here’s a simplified example from my personal life: I’m Irish, which means the only spice I’m aware of is salt. When Nicky moved in with his current friend Ben, who’s from Liberia, Ben started taking Nicky to his favorite restaurants where the menu is all spicy food that I never fed him. At first I questioned the receipts I was seeing for these restaurants – Nicky was paying for his own meals. I started getting angry that Ben was taking him to these places, certain that my poor son was starving while Ben ate. I was pretty humbled when I started asking more questions and found out Nicky absolutely loves spicy food. My personal bias against spicy food led me to believe that my son was being neglected. This also speaks to what we previously discussed; Nicky’s story changed and I didn’t know it.
Think of the barriers and challenges you face in your daily work. I bet you have some ideas. Think about the ways these barriers prevent you or your organization from being the best you can be. Create space and foster opportunities for honest and frank discussions with your colleagues where together, you identify the barriers and the things that could change.
Before those conversations begin, however, organizations need to agree on the core tenets of change that will guide them as they move forward. I’d like to propose a few of these core tenets of change.
- Tenet 1: We must work toward the removal of dependence as a reward for more services
Right now, services are divvied up according to who needs them the most. I’ve got a secret to tell you. This has created the “golden rule” among families: when the systems folks come to visit and evaluate need, don’t tell them about the good stuff – tell them the worst stories you’ve got. That will get you more. The seeds of distrust between families and providers are planted the moment services begin, preventing relationships from building as they should…AND individuals are assumed to be more dependent than they are because that’s what the families have reported so they can get more. Like the example of the description of Nicky that I gave, families have been unknowingly conditioned to steward the system.
- Tying in with this is the second tenet: We must learn new ways of communicating with individuals and their loved ones
If an organization can find a way to foster honest communication with families without the threat, real or imagined, that their loved ones will not get what they need, everyone wins. When the conversation is about possibility for progress, for example, what a beautiful way to foster supports that steward the kind of life we would want for ourselves.
- Tenet 3: We must embrace the presumption of capacity first
Capacity lies in possibility; not just in what a person can do in this moment, but what they could be capable of with appropriate supports and providers who embrace lifelong learning and opportunity.
Many of us believe wholeheartedly in the idea of the presumption of capacity, but can we truly practice this if we are not spending the time as we’ve discussed, asking more questions, learning more about the person and hearing from those who know them best? Certainly when we are introduced to someone based on the systems reports that focus on incapacity, it’s awfully hard to uphold that presumption.
- Tenet 4: We must place value on authentic relationships for those we support
Our need and reliance on relationships is what makes us human, period. When that part of our existence is dismissed like it is within our system-centered, we suffer a loss of our humanity.
Relationships in institutional models are non-existent; indeed, the opposite is cultivated – support providers are discouraged from building relationships because they get in the way of care.
I hear more about HIPPAA than stories about fun outings, accomplishments, new things people have done and new skills they’ve learned, or about when a person was sad or having a bad day and how the staff supported them through it.
In one of my workshops on creating Circles of Support for loved ones, I guide participants in an exercise to list the people that are in their lives. Then I ask them to imagine that those people have disappeared. I ask them how they feel and as you would expect, the responses range from emptiness and sadness to fear and losing their will to live. I pull out that Principle of Normalization and remind them that relationships are a part of the human condition that we all need to thrive; it is not exclusively for those without disabilities.
- Tenet 5: We must create and maintain spaces where relationships can be fostered and strengthened
I know some very creative organizations who have gone through some of my trainings and felt empowered to become more person-centered. Through that journey together, they have learned the power of creating spaces where relationships can be fostered and strengthened.
Here are some ideas that they have come up with:
- Add another person to the interdisciplinary team, whose role is to NOT read the reports but maintain communication with the individual and their loved ones, and report to the team on their findings when it’s time for decision-making. We cannot deny altogether the need for interdisciplinary teams bringing necessary therapies that help people build necessary skills, but as we’ve already discussed, skills do not steward souls. Someone who is the expert voice for the human behind the report should be a valued member of the team.
- Develop a list of questions that ask about a person’s relationships and personal likes/dislikes/skills, that loved ones fill out during the intake process. And/or, if the systems ISP has included family input in the report (like the vision statement), print that section out specifically and spend some time asking the individuals and their families for stories about what the vision statement says.
- Invest in trainings for key staff members OR in an outside professional facilitator in person-centered planning and thinking methodologies. These tools, when used appropriately by trained staff, are highly effective in stewardship and can be integrated into system reports.
- Read together some of the books by the foremost experts on effective communication: 7 Habits of Highly Effective People: Getting to Yes; and Crucial Conversations.
You don’t have to take my word for it when it comes to the impact of valuing and fostering relationships. There is myriad evidence of positive mental and physical health outcomes directly related to decreases in isolation, opportunities for social exchange, reciprocal friendships, intimacy. When we steward the soul, we literally see longer lifespans, fewer health issues, more stable mental health; all of these translate into less expense and disruption of services. It’s a win-win for stewardship!
Last strategy I present to you today: Steward your OWN soul
I know you all got into this profession for the money, but let’s put that aside for a moment. There are a lot of barriers to the great work that you do.
Training and guidance for systems professionals focuses on managing costs and on goals that align with narrow guidelines also meant to stay within budget. Everything from the language we use to the costs we assign is meant to take care of bottom lines.
Families and individuals arrive in varying states of expectation and hope, trauma and distrust. You have to balance compassion and cost, answer to consumers and central offices.
The biggest barrier, if you haven’t already heard me say, is a behemoth system of support that has dehumanized people and devalued care; it has become an industry, which like all industries is engaged in profit and loss. The loss, however, cannot be computed. It is a loss of humanity in the name of organization. You carry that burden in your very souls because YOU are human.
You and I could spend the rest of the day talking about how to steward the soul, but you’ve got other great workshops to attend.
I leave today with a few final thoughts. I want you to know, as a parent first and a professional second, I remember every person who has been in my son’s life for the past 30 years. I remember each person who taught him, advocated for him, who rejected him, who guided me, who lifted up my family and who treated us as numbers. I remember who helped me with his needs, who sat at the budget discussions and demonstrated that he mattered. Each of them impacted Nicky’s life and mine and gave me strength and knowledge that I still use to this day.
This is a lifelong journey for those you support.
You matter. Your role is important. I hope this message brings you strength and conviction to move forward in your profession. I hope our time today has renewed your commitment. I hope my words have stewarded your soul.
Don’t ever doubt that every single day, you are a hero to someone.