Author: OregonISP

Posted on

February 2024 ISP Redesign Update

Posted on

January 2024 ISP Redesign Update

Posted on

November 2023 ISP Redesign Update

Posted on

Dignity of Risk

The same woman in the same place as the first picture, now looking at the camera and smiling with a spoon in her mouth.

Think about the last time you took a risk. How did it turn out for you? What did you learn by taking that risk?
Life is full of risk, and taking these risks is an important way we learn and grow. If you’ve ever moved, gone on a first date, or started a new job then you’ve taken a risk!
Everyone has the right to take risks in life that are meaningful to them- no matter your disability status, support needs, or where you live.

What is Dignity of Risk?

Dignity of risk means that you have the right to live the life you choose, even if your choices involve some risk. Risk is an important and healthy part of life. We all learn by taking risks. Taking risks allows us to have new experiences and opportunities. Imagine how different your life would look if you never took a risk!

Taking risks is often necessary to help us live lives that are meaningful to us. We all have the right to make decisions and take risks that lead us closer to that good life. If you are an advocate or supporter, understanding and supporting a person’s right to take the risks that are meaningful to them is essential. This involves respecting and supporting a person’s perspectives and choices. This can include: 

  • Sharing information that helps a person make a meaningful choice in a way that works for them.  
  • Supporting someone to consider possible outcomes of their choices, both positive and negative.
  • Collaborating with the person to identify support that works for them as they take risks (i.e. how can we address health and safety while the person takes risks that are meaningful to them) 

Consider the following example

A young Asian woman sitting at a counter in a cafe. She's looking out of a window and has a coffee next to her.

Alexandria is a young woman who is passionate about music, connecting with people her age, and coffee. She lives in a 24-hour group home setting and experiences seizures. She recently told her provider that she no longer wants them to come with her to the open mic night at her local café. She stated that “having you there makes me stand out like a sore thumb”. Her provider is initially very concerned, as they are used to giving her continuous support, as she may have a seizure throughout the day. The thought of Alexandria in the community alone is initially terrifying to the provider. 

Questions to ponder

What risk is Alexandria wanting to take? Why might this risk be important to her? What positive things could happen by taking this risk? 

What health and safety considerations are there? How might Alexandria take the risk that is meaningful to her while still addressing health and safety? 

How can we support Alexandria to think about her options?

Important TO & Important FOR

We each have our own definition of what makes us feel happy, content, fulfilled, and comforted. These are the things that are important TO us.

We also have things that keep us healthy and safe. These are the things that are important FOR us. This includes our mental health, wellbeing, emotional safety, and feeling safe. 

Dignity of Risk does not mean ignoring what is important FOR ourselves or others. It does not mean overlooking serious health and safety concerns because a person ‘made a choice’. On the other hand, there will always be some level of risk in life. Eliminating all risk in a person’s life should never be the goal. 

Instead, we want to consider how health and safety can be addressed in a way that works for the person and their life- all while they make the decisions and take the risks that are important to them. 

Consider the following example

The same woman in the same place as the first picture, now looking at the camera and smiling with a spoon in her mouth.

After connecting with Alexandria, we’ve learned a bit more about her perspective. Alexandria has been feeling isolated lately and wants to make more friends. There are a few people she sees at the open mic night who she wants to get to know better. When she has struck up conversations in the past, people tend to speak to her supports, rather than her. It is important to Alexandria to attend the event by herself- she is very clear with supporters on this point.

At the same time, it is important for Alexandria to get the support she needs in case she has a seizure. This support is outlined in her seizure protocol. In the past, well-meaning community members have called 911. If paramedics arrive, this can be a very frustrating and isolating experience for Alexandria.

  • Ideas for balanced support (Alexandria would still choose what works for her, but these ideas may be the starting point of a planning conversation):
  • Supporters check in with Alexandria before the open mic. There are typically some signs if Alexandria is more prone to seizures on a given day (example: lack of sleep the night before, or experiencing an aura)
  • Alexandria adds her provider to speed dial, and calls her provider if she begins to experience an aura
  • Alexandria sits in the front of the coffee shop near the exit, and providers wait in the car. If she has a seizure, providers could then intervene.

Conclusion

While we may deeply understand the importance of taking risks in our own life, learning to support someone else’s Dignity of Risk is a different skill. It can put us out of our comfort zone, especially if we have concerns about a person’s health and safety.

However, supporting Dignity of Risk is a core component of person-centered support. Making meaningful decisions and taking risks are what make life good for each of us. 

Fortunately, there are many resources to help support Dignity of Risk. We invite you to explore the resources below! 

Taking risks is often necessary to help us live lives that are meaningful to us. We all have the right to make decisions and take risks that lead us closer to that good life. If you are an advocate or supporter, understanding and supporting a person’s right to take the risks that are meaningful to them is essential. This involves respecting and supporting a person’s perspectives and choices. This can include: 

  • Sharing information that helps a person make a meaningful choice in a way that works for them.  
  • Supporting someone to consider possible outcomes of their choices, both positive and negative.
  • Collaborating with the person to identify support that works for them as they take risks (i.e. how can we address health and safety while the person takes risks that are meaningful to them) 

Resources

About the Authors

Lindsay Dutton 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.

Jennifer Buss

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.

Posted on

Oregon ISP Redesign October Project Updates

Posted on

Oregon ISP Redesign September Project Updates

Self-Advocate Highlights

Nicholas Kaasa (he/him) and Eddie Plourde (he/him) attended the 2023 Inclusive Leadership Summit sponsored by OSAC to share about the Oregon ISP Redesign Project with self-advocates and families.

Listening Sessions

The Oregon ISP Redesign Project Team continued to hold listening sessions to hear self-advocates and other valued community members. Community Partners have been asked to share feedback about the project by email, recording, phone, or an anonymous online survey.

Diversity, Equity, and Inclusion

Our team is increasing our focus on diversity, equity, and inclusion (DEI) in all areas of the project. This is in response to hearing your feedback on how we can do better as we continue to highlight advocating voices and ideas.

Posted on

Oregon ISP Redesign August Project Updates

It was great to see you all!

 Thank you to our valued Community Partners who came to the August Community Partner Meeting. We shared project updates and heard your important feedback. If you missed the meeting, we still want to hear from you! Let’s connect.

Project Update

The Oregon ISP Redesign project team is working closely with our sub-contractors, in collaboration with you all, to continue the development of the ISP handbooks for Self-advocates, families, providers and services coordinators and personal agents. Listening sessions will continue throughout fall to hear more feedback.

Upcoming Virtual Open Office dates and times were shared including September and October options.

Posted on

Charting the LifeCourse™ 201

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
Get handouts and materials
Posted on

Important TO, Important FOR, and the Balance

A man standing in front of a scale. On one arm of the scale are things representing work and on the other are things representing family and home.

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: 

A scale with "Important TO" heavier than "Important FOR"
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”
A scale with "Important FOR" heavier than "Important TO"
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”
A scale with "Important FOR" balanced with "Important TO"
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.

Posted on

Oregon ISP Redesign July Project Updates

Oregon ISP Redesign July Project Updates

Thank you to our Community Partners and Sub-Contractors for your continued support and dedication. We value every one of you and the important skills, lived experiences and ideas you share.

Please share the Oregon ISP Redesign website link to help get the word out! oregonisp.org.

Self-Advocates can fill out the online form to share their interest in joining the CommunityPartner Group or by emailing our team at redesign@thearcoregon.org or call (503) 428.5434.

ISP Handbook Development:

The team has been listening and learning from Self-Advocates, Family Members, Providers,Services Coordinators and Personal Agents to continue development of the four ISP handbooks.Here are some loud and consistent messages that have been heard:

  • Handbooks should include videos, text, images and graphics.
  • People want to better understand roles and responsibilities.
  • A menu of services would be helpful to know what is available.
  • A need for clear, easy to understand information about the ISP process.
  • Tools to support planning conversations and decision-making.

July was filled with outreach and engagement with Self-Advocates and Families
to grow theOregon ISP Redesign Community Partner Group!

  • Meetings with Self-Advocacy groups
  • Outreach to Oregon’s Consortium of Family Networks
  • Outreach to Spanish-Speaking Family Leaders
  • Direct 1:1 outreach to families and Self-Advocates
  • Follow up with participants from Self-Advocate and Family Listening Sessions

For more information or questions, email redesign@oregonisp.org or call: (503) 428.5434

Posted on

Oregon ISP Redesign May Project Updates

What We're Currently Celebrating:

  • We are excited about the new additions to our Community Partner group and are actively seeking more Self-Advocate and Family voices! 
  • Self-Advocate and Family Workgroups for draft ISP handbooks and forms were held by Beth Kessler and The Arc Oregon. Folks were able to share their important opinions, ideas, and visions for the future. These contributions were included in the first drafts of ISP handbooks and forms.
  • Kelli Downey and Beth Kessler began working with The Arc Oregon to draft ISP handbooks based upon feedback from Self-Advocate and Family workgroups.
  • Community Outreach Update!
    • Eddie Plourde and Nicholas Kaasa presented at the DD Coalition and SPARC Self-Advocacy Group about the ISP Redesign Project and Self-Advocate opportunities.
    • Arturo Zamudio connected with multiple community groups, including:
      • Families that have children that receive I/DD Services, discussing about how they can be involved in the project.
      • Self-Advocates from diverse communities that have an interest in adding their voice to the ISP Redesign Project.

For more information or questions, email redesign@oregonisp.org or call: (503) 428.5434

Posted on

Charting the LifeCourse™ 101

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
Get handouts and materials
Posted on

Planning a Good Life

A woman with down syndrome, wearing a purple shirt and blue pants, sitting next to a man without Down syndrome wearing jeans and a jean jacket. Both are laughing and petting small dogs.

Introducing the Good Life

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.

Posted on

Welcome!

The Oregon ISP Project Team is excited to launch this ISP Redesign webpage. Welcome! 

One cool feature of the new website is this- a space for blog updates. Our plan is to post updates on the progress of the ISP Redesign project each month. 

Take a moment to check out the webpage. If you have questions or input that you would like to share with the Oregon ISP Redesign team, please email us at redesign@oregonisp.org 

Posted on

Let’s Talk About Plain Language

What is plain language?

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.

A cartoon of an automechanic saying "Your bushes on the wishbone are going".

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/BathedSupported 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-ambulatoryUses a wheelchair
Had a behaviorWas upset, raised his voice (plain language to describe what happened)
PeerFriend, 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

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.