This recorded workshop will provide hands-on experience with the Charting the LifeCourse framework and tools. Charting the LifeCourse is an approach to planning with people that is equitable, person-centered and strength based.
Be sure to pause the video and complete the workshop activities, which are posted below. This workshop shares information for Services Coordinators and Personal Agents to:
Expand facilitation skills for planning conversations about a person’s good life
Explore life domains that allow us to think about our lives, what experiences we want to have, and our own good life within the context of family and community
This month, we’ll cover a topic that is foundational for person-centered planning and supports. Whether you plan with and support others or if you advocate for your own plan and supports, these concepts can really help to express what matters. We’re talking about ‘Important TO’, ‘Important FOR’, and finding the balance between.
Important TO
What part of your morning routine helps the day to go more smoothly? Who can always bring a smile to your face? What helps you feel better when you’ve had a hard day?
Our ‘important TO’s can be a lot of different things, but ultimately, these are the things that make us feel happy, content, comforted, satisfied, and fulfilled. Put simply- these are the things that make life good from our own perspective.
Importantly, only I can say what is important TO me. Only you can say what is important TO you. Important TO is our own truth, it’s who we are and what we value. Consider the followig examples:
Marlyn adores her dog Ruffus. He helps her feel calm and gets her walking and outside each day
Li is vegan and is part of an online community that share recipes, ideas, and vegan friendly restaurants.
Julia has a vision for ending world hunger. It gives her a sense of purpose as she volunteers at a local food pantry.
Mahalia is on the school board. Being a community leader is important to her.
Francis visits the coast every month. They love to see the seasons change and they look forward to each trip.
Kristopher goes to the gym after work each day. This helps him unwind and enjoy his evening.
Lyda likes to have plans on the weekend. Even if she’s just visiting a friend, having structure to her weekend helps her relax.
Ruben is proud of his baseball card collection and shows it to everyone who visits his home.
Each person has things that are important to them- regardless of how they communicate this information with others. If you are planning with or supporting someone who does not use words to communicate- how does that person share about what is important to them? Do you have a sense of what brings them happiness, comfort, and fulfillment? How do you know—in other words, how did they share this with you?
Important FOR
Has anyone ever told you that “you should” do something? Has a professional, such as a doctor, dentist, or home contractor, given you advice they strongly encourage you to follow?
Our ‘important FOR’s are all about health and safety. Health can include a lot of different things, such as treating medical conditions, preventing illness, and supporting wellness. A reminder that health includes mental health! Safety is concerned with wellbeing- including physical and emotional safety.
Important FOR can also include what others see as important for us to be valued members of our communities- recognizing that each person defines for themselves which communities they belong to. For instance, your boss might say it’s important for you to clock in on time and get all your work done. The barista at your favorite coffee shop might say it’s important for you to wait in line, instead of cutting to the front.
Unlike ‘important to’, ‘important FOR’ can come from others’ perspectives, not just our own. Consider the following:
It is important for Daniel to live in a neighborhood with crosswalks that alert him audibly as they change, so that he can cross with only his cane.
It is important for Dev to feel safe at home. For him this means that no one raises their voice, including staff and roommates.
Lula speaks with her therapist each week and checks in with her psychiatrist every two months.
Justine gets his flu shot each fall.
When Paula got an ear infection last month, they went to the doctor and got antibiotics.
Viktor will take a “mental health day” when he begins to feel overwhelmed at work.
Balance Between
Eloise values taking a shower by herself. She likes to be independent. Eloise thinks warm showers are relaxing and help her de-stress. Eloise is also at risk of falling, especially when she’s taking a shower. Support is needed to help prevent falls.
The following images may help to illustrate what “out of balance” and “in balance” could look like for Eloise:
Out of Balance Support
Eloise doesn’t want anyone in the bathroom with her while showering. Supporters have concluded that they can’t support her in the shower.
Only Important TO is addressed, without consideration for health and safety
“Happy and Unsafe”
Out of Balance Support
Supporters stay in the bathroom with Eloise when she’s showering, no matter what she wants. If Eloise yells at them to leave, they stay with her and make sure she doesn’t fall.
Only Important FOR is considered, Important TO is not addressed This is how the I/DD system historically approached support. This did harm to many people!
“Safe and Miserable”
Balanced Support
Eloise’s supporters make sure she has her shower chair and that grab bars set up. They clear the bathroom floor of clothes, towels, and puddles. They also leave the door cracked and stay in the living room (within hearing distance) in case Eloise asks for help. This support works well from Eloise’s perspective.
The connection between important TO and FOR is addressed.
Each is valued.
Balance is a work in progress. How many of us can say we found the “perfect balance” in our own lives? Probably no one! We try, fail, learn, and try again. Our experiences, both positive and negative, shape our approach to balancing important TO and important FOR in our own lives. This is true for all people at any age, regardless of what supports they need or choose to have.
This webinar provides a high-level overview of the LifeCourse™ framework and its current and future use in Oregon. Charting the LifeCourse is an approach to planning with people that is equitable, person-centered, and strength-based.
This webinar shares information for Services Coordinators and Personal Agents to:
Explore equitable, person-centered, and strengths-based approaches to planning with people
Learn what the LifeCourse™ framework is and how it can support better conversations and better plans with people
What comes to mind when I ask, “What does a good life mean to you?” We all have different ideas about what a good life means to us. Sometimes, it can be difficult to visualize. Having tools available when we want to plan out our life can be helpful. Having a tool can help us organize our thoughts and might even help us consider ideas we wouldn’t have considered on our own. If you are struggling to think of what a good life looks like for you, it can also be helpful to start by considering what you don’t want. The good life should be a picture of your hopes, dreams, and anything that keeps you moving forward. Life is full of bumps in the road, but our good life (hopes, dreams) reminds us why we want to get back up and keep trying.
Eddie shares about his good life.
Kaaren shares about her good life.
ISP Planning and the Good Life
During the ISP planning process, one of the most important pieces is discovering the person’s vision of how they want to live and what may be needed to help them on their trajectory towards a good life. No matter what your role is in the ISP planning process, the heart of planning is figuring out what a person wants and doesn’t want in their life. One tool that can be helpful for visualizing and discussing this is the Life Trajectory from Charting the LifeCourse™. There are two tools available: a Trajectory for exploring and a Trajectory for planning. Both tools utilize a basic concept of considering what you want, and what you don’t want. Again, if you feel stuck, try starting with what you don’t want and build from there.
A tool for exploring ideas about trajectory for a good life. Click for a printable version.
A tool for planning a trajectory for a good life. Click for a printable version.
Tools for Exploring the Good Life
Both the trajectory for exploring and the trajectory for planning can be used in any way that works for you. The purpose is to discuss, think about, or write down what comes to mind when you think about what you want for your life. Likewise, the tool asks you to consider what you don’t want for your life. The tool is flexible, so start wherever makes sense to you.
Trajectory can be used for specific situations and topics. For instance, if you’re starting a new job- what do you want and what do you want to avoid at the new job? If you’re planning a vacation- what do you want and what do you want to avoid during your vacation? If your child is starting school? If you’re resolving a dispute at work?
Planning for a whole life can feel daunting. This can especially be true during times of crisis or when the future feels uncertain. This concept can be applied to specific topics and situations- we can even ask what we want and want to avoid for tomorrow. Often, this helps us broaden our focus and strengthen our planning skills!
Not just a tool, but an idea for everyone!
Trajectory is more than just a tool. Trajectory is an idea, a concept, and a way of thinking for everyone. Anyone, at any age, can use this idea to start visualizing and planning out what a good life means to them. Organizations can use this concept to envision what a team wants or doesn’t want for the next month, few months, or year and beyond. Teams can use this tool to consider what they like or don’t like, or what went well and what didn’t go well with a meeting, training, class, or event. The list goes on- it’s all about taking the time to consider and plan.
Trajectory reminds us that taking the time to prepare and reflect gives us all the opportunity to learn and grow. The best way to explore trajectory is to create one for yourself, your team, your family, or a loved one. Getting hands on practice with this concept is the best way to understand its usefulness. For those that are a part of an ISP planning team, I would especially encourage you to try this out at your next planning meeting. Let’s all work together to reach that good life!
About the Author
Lindsay joined the Arc Oregon team as an OTAC Trainer in August of 2022. She brings with her 7 years of experience working within the field of disabilities. Most of that time was spent working at a Foster Home providing direct care, and then as a Personal Agent at a Brokerage providing person centered case management. Lindsay is a Charting the LifeCourse Ambassador.
Plain language is simple, straightforward language. It reflects how most people communicate in their day-to-day lives. It is both easy to understand and clear in its message.
This month, we want to focus on how plain language can be used in the ways we connect with others and in the ways we write. It is about better communication- plain language is a best practice!
To understand what plain language is, we want to contrast it with jargon. Jargon is any set of words that make sense ONLY to people working in a particular field.
Imagine that you are getting your car repaired. The mechanic says to you “your bushes on the wishbone are going”. Would you know what they meant? Would not knowing make you feel anxious? Now imagine that they told you “There are little rubber parts called bushes that are attached to suspension parts in your vehicle which are wearing out. They are not expensive to replace.” Do you understand what the mechanic means now? How might you feel different hearing this instead?
Now imagine someone who doesn’t work in the field of disability hearing “Your ONA is next week, so be ready to answer questions about your ADL/IADLs”. Or if the same person looks at their Individual Support Plan (ISP) and reads “Transportation- substantial/maximal assistance, persons providing support accompany person on bus/van”. How might someone feel if they do not understand what this means?
Why use plain language?
Plain language is more accessible
We all want to understand what we read and what others are communicating. By using plain language in how we write and communicate, it removes barriers to access and understanding.
Importantly, people have the right to understand the contents of their Individual Support Plan (ISP). How might jargon and “systems language” create barriers for people and families?
Plain language is often clearer and more accurate.
Consider the phrases below. Which give you more information?
Dex participated in a community integration activity vs. Dex went to a movie with their roommate.
Tricia had a behavior vs. Tricia got frustrated at the TV and threw the remote on the floor.
Owen refused support with his hygiene protocol vs. Owen did not want Pam (his supporter) to help him in the shower this morning
Plain language is more person-centered.
Systems-language and jargon can feel alienating. Phrases like “socially unacceptable behavior” or “susceptibility to exploitation” can feel both frightening and extremely vague.
Self-advocates and families frequently share that some language used in their Individual Support Plan (ISP) feels alienating. Plain language may help to alleviate this.
For instance, instead of the jargon “socially unacceptable behavior”, can we use plain language to describe the support that the person needs? Does the person need reminders to give strangers personal space? Do they need someone to help them get to a restroom or other private space if they need to remove uncomfortable clothing?
Plain language is more equitable.
At its core, plain language is equitable language. We use it in our everyday lives to discuss ourselves, our friends, our family, our colleagues, and many others. With plain language, there is not one set of words being used to describe a person who accesses services, and another set of words for everyone else. Plain language is for everyone.
To identify plain language, it can be helpful to ask the question “would I use these words in my own life to describe myself or those in my family”. If the answer is NO, you might be using systems language or jargon.
Practice, Practice, Practice
Remember, plain language may be simple, but breaking the habit of jargon can be very difficult. If you’re very used to using a set of words or phrases, it can be hard to try something new.
Consider the following chart. Which language do you use? Are there any terms or words you hope to replace in your work?
Instead of…
Try…
Toileted/Bathed
Supported person to use the restroom, take a shower
Non-compliant, refused supports Example: John refused his community integration activity
Person did not want to XYZ, Person decided not to XYZ Example: John did not want to go to the movies today.)
Confined to a wheelchair, wheelchair bound, non-ambulatory
Uses a wheelchair
Had a behavior
Was upset, raised his voice (plain language to describe what happened)
Peer
Friend, Coworker
People with disabilities, “them”, individuals Example: I support a non-verbal individual.
Person (depends on context) Example: I support someone who uses a communication device.
Plain language is worth the effort. Be patient with yourself and others, but never stop trying to use more accessible, more accurate, more person-centered, and more equitable language- in other words, plain language!
About the Author
Jennifer Buss, M.S.W., joined the OTAC training team in September 2018. Jennifer is a former Services Coordinator and Direct Support Professional, with experience in person-centered planning and advocacy. Her passions include person-centered practices, service equity, and systems-level advocacy. Jennifer is a Charting the LifeCourse Ambassador and Person Centered Thinking trainer candidate.
Let’s start by going on a visual journey. Picture a star and visualize the five points of the star. The five points of the star each represent a different type of support: personal strengths & assets, technology, community based, relationships, and eligibility specific. Now imagine for a moment that you have a dream of traveling, but you aren’t sure how to reach it. We can use the star and its five points to consider all the different ways you can get support to achieve your dream of traveling.
The Star, pictured above, comes to us from the Charting the LifeCourse framework. It provides a way to think about and plan for many different types of support that are possible. The image contains a description of each point of the star, which are also described in the article below.
The star that I am referring to is The Star Tool from the Charting the LifeCourse framework. This tool can be helpful during the ISP planning process and can be used in many ways. It can be a great visual to see all the avenues that someone can access for support. For more information, examples, and videos of the ways The Star is used, visit the Charting the Lifecourse website.
Below we will explore how the different points of The Star can help support a dream or goal that you might have. We will continue to use the example of traveling.
This point of the star is all about the skills, strengths, and assets that you bring to the table. What knowledge or life experiences do you already have that could support making your goal become a reality? What are you good at and what do others like and admire about you? Do you already have resources that can support you with your goal? We all have skills and strengths that we bring to the table that can help us achieve our goals.
For the goal of traveling, personal strengths and assets could include:
Being knowledgeable about the place you want to visit
Having a good sense of direction
Having luggage that you can use
Being able to use GPS to get around
Knowing how to use transportation services
Experiencing traveling with children, if you’re bringing kids along
Next, we want to consider those important connections we have in our life from which we can draw support to achieve our goal. This could be friends, family, acquaintances, or any person that you feel close with. Anyone that you have a connection with could support you with your goal.
For the goal of traveling, relationships could include:
An aunt or an uncle that does a lot of traveling
A parent that could help you do research
A sibling who can provide childcare while you travel
A friend who works at a travel agency
This section can include any technology that supports your goal. This could be personal technology that can be used by anyone, assistive or adaptive technology, or environmental technology that helps adapt surroundings. This could include a smartphone, tablet, laptop, video game system, smart watch, adaptive equipment for cooking, a wheelchair, scooter, electric toothbrush, glasses, and the list could go on. Tech can also be low-fi options such as an adaptive spoon, light switch, or lowered countertops. Technology can be useful in countless ways.
For the goal of traveling, technology could include:
Using a computer to research about the place you want to visit and where you want to stay
Looking up flight and transportation information using your smartphone
Using physical maps to help you get around while traveling
Noise canceling headphones and fidgets for adults and kids to reduce stress in new situations
In this section we want to consider places, groups, or resources that anyone can access to in the community. In general, this could include businesses, parks, membership organizations, public resources, schools, libraries, faith-based communities, or health care facilities.
For the goal of traveling, community-based supports could include:
Travel agencies and travel groups or clubs (Joining a travel group could also then lead to more connections and grow the support you have from relationships)
Using your local library to check out travel books for adults and for kids about the place you want to visit
Facebook group of local travel enthusiasts
The final point on the star is the eligibility specific supports. These are the paid supports that can work with other points on the star to support someone with their dreams and goals. This could include government paid services based on disability or diagnoses, special education, Medicaid, Social Security, and many others. Eligibility specific supports include anything you are eligible for that not everyone in the community can access. Often times paid IDD services are the first thing we think of, but it can be valuable to look at other areas of support (the other points of the Star) so we get a full picture of the supports available to help lead to a good life.
For the goal of traveling, eligibility specific supports could include:
A paid provider who could help with research and planning
Attending a class trip chaperoned by school staff (for school age youth)
Travel groups that are specific for someone with a disability, such as TRIPS INC
Having a driver’s license to drive yourself to the airport
Conclusion
We have made our way around The Star and have identified so many different options available to us to help support our dream of traveling! The Star is just one of many tools available from LifeCourse. There are many uses for The Star from supporting a specific goal to getting a general sense of available supports in someone’s life. The star can also be used with additional LifeCourse Tools to support the ISP planning process. Check out some additional videos and links below that show people using the tools.
Lindsay joined the Arc Oregon team as an OTAC Trainer in August of 2022. She brings with her 7 years of experience working within the field of disabilities. Most of that time was spent working at a Foster Home providing direct care, and then as a Personal Agent at a Brokerage providing person centered case management. Lindsay is a Charting the LifeCourse Ambassador.
Choice is an essential part of life. Everyone has the right to choose what they want and what they don’t want. As a person who experiences a disability, I sometimes feel those choices carry a larger impact on my day-to-day life. For example, although I have the right to receive supports and services, it is also a choice. If I didn’t choose to have my supports and services, my ability to be as independent as I am would be severely diminished. Without information about the supports and services available, how can we be expected to make choices on these very important life decisions?
In this article, I asked self-advocates Dayna Davis and Eric Thompson, “What does it mean to have informed choice when it comes to planning your supports and services?”
Eric Thompson is a self-advocate in Medford, Oregon who is passionate about his work with the Oregon Self Advocacy Coalition and believes everyone should be self-advocates.
Dayna Davis is a self-advocate in Eugene, Oregon who is passionate about advocating for individuals who experience disabilities.
How do the choices we make impact our lives? Dayna: They impact our lives a lot. It determines the direction we go by the decisions we make.
How would you feel if someone who cared about you made a decision for you that you did not agree with? Eric: I would be concerned and wonder, are they really listening to me and what I want?
How have you come to understand what it means to take the lead in making decisions in your life? Dayna: I am continuously finding myself. I am still learning that what matters most is what I want to do with my life. There is a dark side of developmental disability services too. This includes the professional people that advise us and often project their own agenda on us. We need to be our own person, despite our helpers’ ideas of what we can do.
What life expectations have changed as you’ve made decisions about your life? Eric: By making what I consider the right decisions for me and my life, I’m able to have freedom with the choices that I make.
Have you taken any chances that when looking back on it, may have provided you with opportunities to fail, learn, and grow? Dayna: During my first job, I failed, learned, and grew from that experience. Now I look where I am today and all that I have done to help OSAC (Oregon Self Advocacy Coalition) be where they are today.
What is your hope for the next generation and their ability to lead the decisions in their lives? Eric: What I hope for students is that they all can become Self-advocates and teach parents and teachers.
In closing, as someone who sits on both sides of the table and receives services and supports through the same field I work in, I view my services and supports like a roadmap, and informed choices as the tools I need to decipher that, sometimes complicated, roadmap. As supporters, family members, teachers, and Case Managers, it is your job to help us understand those choices so that we as individuals can make the best decisions for our lives. Thank you to Self-advocates Dayna Davis and Eric Thompson, who shared their thoughts and opinions with our team.
About the Author
Nicholas Kaasa joined the ISP training team with The Arc Oregon in February 2021. He has held a variety of positions in Oregon’s DD services system. Most notably, he worked as a part of Full Access team in Eugene as the Community Outreach Advocate. In this role, he focused on local and statewide self-advocacy efforts.
Nicholas has experience working with families and transition age youth, providing information about DD services in Oregon, and engaging in conversations about choice advising with individuals experiencing disabilities and their families. His passions include person-centered practices and advocating for those, like himself, who experience disabilities.
Here are a few things to think about when planning your own life or when planning with someone else. Start by listening to the person about how they want to plan and recognize it looks different for everyone. Whether you are planning for something big or small in your life, it is important to feel informed, comfortable, and safe to make plans and decisions. Anytime you are planning, or are in the role of facilitating a person’s Individual Support Planning (ISP) meeting, taking time to understand a person’s preferences and needs in each of these areas can help ensure we are listening to and supporting how someone wants to plan.
When
Ask the person what time of day they would want to meet. Some people would pick the morning time, others want the afternoon or evening. If they do prefer mornings, then ask what time in the morning- be specific about that. Also consider the day of the week and time of year.
Amber is a mother of two school-age children. She finds it easiest to plan when the kids are at school. She prefers meeting in the morning, after she has had her coffee.
David lost his father three years ago in the late fall. He and his family are still getting used to the holidays without his father; this is a very challenging time of year for them. They do not want to plan in November, December, or January.
Where
When working on a plan with a person, consider what will make that person comfortable while planning. Ask the person where they might want to have the planning meeting. Would they want to have it done at home, work, or in the park? Where is the person most comfortable to have more personal or private conversations, if needed? Prioritizing accessible environments is important for anyone who uses mobility supports.
Joanne feels more comfortable talking about the future when she’s doing something active. Joanne meets at the park with her PA so that they can walk and talk together.
Dexter doesn’t want to travel to meet up with their support team and also doesn’t want to have multiple people inside their home at once. Dexter prefers to hang out on their back patio when planning with others.
With Whom
Check in and learn who the person wants to have involved in their planning and at what times. There are some people I know who will not talk about personal things in front of their family members, but they will talk about it with their Services Coordinator. Schedule separate meetings, if needed, to prioritize the person’s comfort and consider power dynamics among the team to ensure the person is empowered and supported in their decision-making while planning.
Madeline prefers to dream big with a big team- wanting to discuss desired outcomes with many friends, family members, and supporters. Other conversations, especially related to health, happen with a smaller group.
Danica prefers to have meetings with their partner and Personal Agent separate from their parents as they discuss their relationship, sex, and family planning.
Preferences
Learn what kind of things or items they want to have around them and don’t want around them such as: pets, toys for children/siblings, food/drinks, fidgets, note taking materials etc. Another example is if a person has an allergy, like I do to Latex, I make sure nobody brings anything around me made with rubber or Latex. Does the person have supports, while planning, to help with sensory, hearing or vision needs, and communication supports? Can we create agreements before the meeting, such as topics are off the table or how decisions will be made? If approaching a sensitive topic, ask the person for permission to discuss the topic with them and let them know they can take a break from the conversation or end it at any time. Consider supports that can help the person feel more comfortable and create a safe space for the conversation to happen.
Abebe has his ISP meeting at a park so he and all his cousins can play when he wants to take a break from the meeting. Abebe’s parents bring a lot of food, and they start the meeting by sharing updates about Abebe’s past year and highlighting the fun things he did and learned.
Erika likes it when her Services Coordinator draws and writes down information as it is shared. She always asks to hang up the posters on her bedroom wall.
Erika uses a communication device, which supporters help to make sure is charged and available for every meeting.
Accommodations
Always consider what accommodations the person or people they invite to plan may need. Accommodations can really be anything that helps a person feel calm, comfortable, and engaged during planning. For example, when planning with people of diverse backgrounds, there may be a need for an interpreter or translation services so the person and others can meaningfully engage. Does the person want someone to take notes or write ideas down as they are saying it? Do they need large print materials, music playing in the background, having their pet with them, shorter meetings vs. one long meeting, Braille, frequent breaks, etc.?
Joon’s parents realized that using Zoom meetings has helped with her social anxiety. Her Services Coordinator has found that he has been able to learn more about Joon and noticed she’s been more active and engaged in conversations, which has opened up more opportunities to get to know her.
Leyla is someone who needs to process information internally, and have time to collect her thoughts. Her Personal Agent sends out the meeting agenda at least two weeks ahead of time, and talks to Leyla over the phone a week before the meeting. During these phone calls, Leyla is able to request changes to the agenda and talk through her initial planning ideas.
About the Author Jen DiBello has been with the OTAC program for 25 years. During this time, she has worked as a trainer and administrative assistant with the Oregon ISP team, as well as the Safety Committee leader. Jen recently became a Charting the LifeCourse™ Ambassador and is a credentialed People Planning Together trainer.
Chronic pain can impact all aspects of a person’s day to day life, including their mental and physical wellness. It often requires the person to explore a multitude of supports and strategies to help them manage their pain and keep doing the things they love.
Chronic pain is defined as pain that lasts longer than three months and can occur in any part of a person’s body, including full-body pain experiences. Pain can fluctuate in severity, as well as come and go for periods of time.
According to the American Journal of Nursing, “people with intellectual or developmental disabilities suffer from the same chronic diseases and conditions as the general population but are more likely to have physical and psychological comorbidities. This places them at higher risk for experiencing pain and for having more frequent or severe pain.”1
This is an issue of equity. Though people with intellectual and developmental disabilities experience higher rates of chronic pain, pain is often underrecognized and undertreated for this population1, 3. This is especially true of those with diverse communication, whose communication about pain may be misinterpreted or perhaps even labeled as “challenging behavior”. Black, Indigenous, and People of Color (BIPOC) are additionally impacted by systemic racism, including disparities in accessing healthcare, getting accurate assessments, and receiving appropriate treatment for chronic pain.4 BIPOC communities, most specifically Black people, have and continue to face medical care bias that compounds disparities.
When planning with someone who experiences a chronic pain condition, it will be important to first listen and learn what they have already tried and what works for them now. The ‘4 plus 1 questions’ tool is one way to facilitate and record this conversation.
If a person is new to experiencing chronic pain, they may not yet feel like the expert or their own best advocate. Throughout each person’s unique journey with chronic pain, the right tools, supports and people can help the person to be the expert and best advocate.
As a person who experiences a chronic pain condition, I can share that pain impacts my ability to communicate and process information, especially when I am experiencing a pain flare with severe muscle spasms. When this happens people often want to ask, “what can I do to help,” but at that point I am unable to ask for the things I want and need, and it leaves us both feeling more frustrated. I have learned to share with those close to me what helps me when I’m experiencing increased pain so it’s a win-win for all. A person’s support needs for managing chronic pain may differ at times, depending on a multitude of factors. For instance, temperature changes, activity levels, medications, and other external stressors can all impact a person’s pain experience.
When planning with someone who experiences chronic pain, it will be important to consider a variety of factors and supports, such as:
Adapting activities and environments for accessibility and comfort: If a person is planning a long trip, consider additional break times and finding destinations that are accessible, especially for those who uses mobility supports. Occupational and Physical Therapists can help a person explore options for adapting activities to support comfort and independence within a person’s daily routines and activities. Consider engaging in wellness related activities virtually during this time, as many community-based events and activities are now offered online!
Mental Health and Wellness: People managing chronic pain can benefit from a “toolbox” of different health and wellness related tips and tools to help manage pain. The person may already have great tools that work for them, and medical professionals may also have ideas on new tools to try. These could include ice/hot packs, therapeutic pillows, Transcutaneous Electrical Nerve Stimulation (often referred to as a TENS machine), body wraps/therapeutic taping, aromatherapy, tools for self-massage and other general comfort items.
Pain Management Clinics: These programs often offer support with medication management, resources for best-practices in managing chronic pain, and self-help techniques for distracting one’s brain from the pain. The techniques can interrupt pain signals through methods ranging from tactile/sensory supports to bio-feedback coaching sessions.
Community Health Centers and other Holistic Practices: Several types of non-pharmaceutical pain management supports can be considered in consultation with a person’s medical team. These supports can include massage therapy, acupuncture, restorative or therapeutic yoga, relaxation/breathing techniques, life-coaching, and dietary or other nutritional supports.
Chronic Pain Support Group: These can provide an outlet for the person to share and connect with others. This also helps to combat feelings of isolation and loneliness. Many chronic pain support groups have shifted to virtual during the COVID-19 Pandemic.
Mental Health Services: Managing a chronic pain condition can have a significant impact on a person’s overall mental health and wellness. The person may be experiencing grief and loss, as they may no longer be able to do the things they once enjoyed or had hoped for their future. Often the activities we choose to do give us a sense of identity and for some people experiencing chronic pain they may also be processing “who they are now.” People with chronic pain are three times more likely to develop symptoms of depression or anxiety, and people with depression are three times as likely to develop chronic pain.2 Depression can cause unexplained pain, such as headaches or back pain, and people who are depressed might have difficulty doing physical activities and other wellness practices. In turn, chronic pain can lead to trouble sleeping, increased stress, or feelings of guilt or helplessness associated with depression. This can be a hard cycle to break and being intentional about helping to break this cycle is important.
View my LifeCourse Trajectory
View my Integrated Support Star for Managing My Chronic Pain Condition
A few tools that have helped me navigate my chronic pain experience is the LifeCourse™ Trajectory and Integrated Support Star tools. I started with using the trajectory tool to consider what I want and didn’t want in my life. It helped me see the things that I can do to help move towards the life I want and to avoid a life of isolation, depression, and worsening symptoms. I then used the Integrated Support Star to help me explore different supports and resources available to help me on my path.
Wellness Planning: If you are in a support role for someone who experiences chronic pain it is important to understand it impacts all aspects of a person’s life. It can be overwhelming for the person, especially when it comes to navigating supports. No matter how far along a person is in their pain experience and ability to manage pain, each person can benefit from proactive conversations about options for pain management. One important message to remember is that people who experience chronic pain are working to “quiet the pain” enough to be able to do the things we enjoy. The focus is less about how to completely stop the pain. Really listening to person and their actions can help you in your support role. If the person’s pain is at a consistently high-level, where they are unable to enjoy life, then we must start with addressing the need to reduce the pain immediately. It is about supporting a person’s dignity to live comfortably and strong advocacy may be needed.
Consider how a person’s chronic pain might be addressed in their ISP and day to day support:
Chronic Pain Protocol- Outlines general supports that help the person manage chronic pain. This can help supporters to provide consistent, quality care around chronic pain that works for the person. It incorporates what is ‘important to’ the person and lessons learned about what does and does not work for them.
“Pain Day Routine” Support Document- A customized tool developed with the person to outline what supports are needed and how they may look different when they are experiencing an increase in pain.
Person Centered Information Form- Outlines communication strategies that work best when the person is experiencing pain
Communication Chart– If pain impacts a person’s communication, a communication chart can be a powerful way to help supporters understand how the person communicates when they are experiencing elevated pain levels, and what they can do to help support during these times.
Advocacy: We need people in our corner! Creating a One-Page Profile to share with medical professionals can help a person in their medical advocacy efforts. One-Page Profiles can also be a powerful tool to help others understand the person’s communication about pain.
In my role as a behavior professional in Oregon for the past 12 years, I have learned from too many people that when pain goes unmanaged, it can also lead to more significant risks in a person’s life. When a person goes with unresolved pain, the outcome can be even more hurtful or harmful for their health and well-being. If a person’s behavior changes, it is important that we always rule-out potential underlying medical factors that could be a concern, especially if a person is unable to verbally communicate what they are experiencing.
Advocacy can look like supporting a person’s ability to communicate about their pain and the supports they many want or need. This could include using a visual pain scale or pictures of wellness activities.
*Disclaimer: Please consult with licensed medical professionals to discuss recommendations and supports when planning with a person who experiences chronic pain.
About the author Jennie Heidrick started with the OTAC program in 2009 and has been providing training, consultation, and mentorship services for Oregon’s IDD service system. Jennie is passionate about supporting people with IDD and their families, in addition to collaborating with the teams of people throughout Oregon who are committed to the same goal of protecting people’s rights and ensuring people have access, information and tools to live their best lives. Jennie experiences a chronic pain condition, disability and is a strong advocate for others who experience chronic pain and disability as well.
The Differences Section in the ISP is a place to include any differences or disagreements with what is in the plan and what the person or any other team member wants.
While this might seem straightforward, this section plays a really important role in planning.
What the Person Wants
Sometimes, it may not be possible for the plan to reflect exactly what the person is asking for or wants. By recording this in the differences section, we can:
Honor the person’s perspective
Acknowledge when the plan doesn’t reflect what the person wants
Call attention to this difference, so that we can work toward aligning the plan with what the person wants in the future.
We know planning is going well when we’re working toward the person’s vision for a good life.
We want to avoid simply documenting the same difference year after year without effort toward aligning the plan with what the person wants.
In the example above, TJ is living with his parents but wants to be living with his girlfriend, Ashley.
Even though there are several logistical reasons that TJ cannot move into an apartment with his girlfriend right now, TJ’s ISP team is not losing sight of where TJ wants to be living. By documenting this difference, TJ’s perspective is in plain view. His team will continue to revisit this conversation, address barriers, and support TJ to live his ‘good life’.
What Any Other ISP Contributor Wants
The person is the driver of the plan. The ISP should reflect what the person wants, and at times, this may mean that the plan does not include what other ISP contributors want. By including differences between the plan and what any other ISP contributor wants, we can:
Support other ISP contributors to feel heard and having their perspective recorded
Have clear communication about the contents of the plan, especially when there are many different perspectives
Support the person to direct the contents of their plan
In the example above, Maya likes to take the bus to work. Her sister, Alexa, believes that Maya should not be taking the bus by herself.
By recording Alexa’s perspective, those planning with Maya can help Alexa to feel heard and that her concerns are taken seriously. However, by recording this concern as a difference rather than letting it shape the plan itself, Maya’s ISP reflect what she really wants (taking the bus to work).
By recording Alexa’s perspective, the team may also consider what might help Alexa be more comfortable with Maya riding the bus and help these planning conversations happen with sensitivity and respect to Alexa’s concerns.
No differences? Don’t forget to check ‘No known differences’!
There may not always be difference between the contents of the plan and what the person or other ISP contributors want. This is great, but don’t forget to check that there are no known differences. This helps to close the loop and shows that there are no differences- not that we overlooked or forgot about this section.
Do you have questions about using the Difference section? Have you had success or challenges while using this section? We would like to hear from you! Please reach out to our team.
Independence, Integration, Productivity – Values of the Oregon ISP Planning Process
Our team, while providing support around the Oregon ISP, often hears this question: What does it mean for an ISP to reflect Independence, Integration, and Productivity? These values are important in each of our lives and show up in many ways. But how do these values look when planning with someone within the Oregon ISP process?
There is no one answer. When we are invited to plan with someone around what a “good life” means to them, we must consider how the values of independence, integration and productivity can look different for each person. You’ll find these values listed in the ‘acknowledgments’ section of the Oregon Individual Support Plan (ISP).
ISP team – does this ISP reflect… Independence: Having control and choice over one’s own life. Integration: Living near and using the same community resources and participating in the same activities as, and together with, people without disabilities. Productivity: Engaging in contributions to a household or community; or engaging in income-producing work that is measured through improvements in income level, employment status, or job advancement.
While we can all agree that these values are not only required but key to living a good life, how do we know if they are reflected in plans? The answer to that is much different than simply “checking the box”.
Values Embedded in the Planning Process
Independence, integration, and productivity are values embedded throughout the planning process. These values are intended to be part of a shift away from a plan that only reflects support needs and services. Instead, planning is about supporting someone to live the life that is meaningful to them. This is a very personal thing. After all, each of us have our own vision for a good life and what this means to us.
Consider your own life for a moment. What does “productivity” mean to you? What does it look like in your life, community, and culture? How is this different from others that are close to you? For example, “productivity” in a parent’s life will looks different that “productivity” in the lives of their children, their own parents, or even their partner. It can also look different depending on what is happening in that moment, that day, or that time of year. Productivity, as a life value, is something that is deeply personal, constantly evolving, and cannot be reduced to someone else’s checklist.
Ultimately, what’s guiding planning is the person: who they are, what is ‘important to’ them, and what their personal vision for a good life is. In the case of children, this also includes who the family is, what is ‘important to’ the family, and what the family’s vision for a good life is. When this happens, independence, integration, and productivity follow.
Common Misconception- Values, not Check-Boxes!
A common misconception about independence, integration, and productivity is that there is some part of a person’s ISP that must be specifically written to ‘show’ each of these values. This is not the case. The guiding force of the planning process is the person (or the family, in the case of children). If we support someone to pursue their ‘good life’, then these values will follow naturally. When this happens, we can confidently answer “yes” to the three questions about what the plan as a whole reflects.
There is no one section of the plan that must capture these values. These values will show up in many different places, if the person’s vision of a good life is truly leading the planning process. Consider these examples:
Gavin’s autonomy is reflected in their Desired Outcome to get a new tattoo. This reflects independence.
Malik, with support from his PSW (described in the Provider Service Agreement), creates pottery alongside other artists at his community college. This reflects integration.
Maria contributes her time as an usher at her church, as described in her Person-Centered Information. This reflects productivity.
When we write documents aiming to specifically demonstrate these values, it can shift the focus away from what is truly the person’s vision of their good life. In some cases, it may even lead to imposed or outside perspective of what “independence, integration, and productivity” should look like in someone’s life. Consider the examples below:
The first sample shows a desired outcome that may have been written to specifically demonstrate that Jackson’s ISP reflects independence. However, unless Jackson is interested in learning to do own laundry and this is part of his vision for a good life, we have missed the mark. Additionally, this outcome may reflect the values of others on the team, and what they believe ‘independence’ should look like in Jackson’s life. It may ignore Jackson’s perspective on what independence means to him.
The second example shows a desired outcome that has been written in response to Jackson’s ‘good life’ and something he is really hoping to do in the next year. Although this outcome was not written with independence in mind, there is a lot of things here that relate to independence- planning a trip, saving and budgeting money, taking that trip. In fact, Jackson might even be learning to do laundry so that he can pack fresh, clean clothes or wash his clothes while on vacation!
Yeah, but what about…?
If you are reading this article and wondering how it might apply to your work and the people you support, please reach out to our team! We understand this can be a complex topic and our team is happy to offer support.
