Category: Pipelines

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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.

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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.

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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.

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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/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

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.

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Making Decisions with Support

As people, we all need support to make decisions in our lives. What this support looks like can differ for each of us depending on the type of decision. As part of the Oregon ISP planning process, helping others be informed about their options is one of the most important roles of supporters. This article provides some basic information about supported decision-making so you can help people explore decision-making tools and supports.

In this video a self-advocate discusses the importance of Supported Decision-Making and provides a brief description of what it is. Please note that the free book mentioned at the end is specific for Texas. 

In this video a self-advocate discusses how he uses Supported Decision- Making in his life and how these tools have helped him live more independently.  

All of us use supported decision-making at some point in our lives. We ask others for help to make both small and big decisions. For example, if someone is faced with making a medical decision, such as deciding to have a surgery or not, people will often seek out advice from others who have gone through similar medical situations. That is an example of supported decision-making. Supported decision-making agreements and tools can be used as a great alternative to guardianship, and even those with a guardian can benefit from using supported decision-making tools.


Over the past several years, Oregon has made significant strides in bringing awareness, education, and movement towards recognizing supported decision-making as an alternative to guardianship. Supported decision-making tools are getting in the hands of people with intellectual and developmental disabilities, family members, and other supporters to help them make important decisions. Supported decision-making embodies a set of values that aligns with Oregon’s Office of Developmental Disabilities Services (ODDS). Although supported decision-making agreements aren’t yet legally recognized in Oregon, they are an option for people to record their wishes and desires and who they determine as a supporter to help them make decisions.

Learn more at the ODDS webpage on supported decision-making.

At its core, supported decision-making is about helping people, regardless of ability, make decisions in their life by using supports they already have available. These supports could include technology, community resources, family and friends, or paid supporters. With supported decision-making, the person remains in control of their life and decides what areas they want and don’t want support with.

One tool that works especially well as part of the ISP process is the Exploring Decision-Making Supports Tool from Charting the LifeCourse™. It provides someone with the opportunity to explore what decisions they may need support with. This tool explores the different areas or life domains in a person’s life that they may need support with, including:

  • Daily Life and Employment
  • Healthy Living
  • Social & Spirituality
  • Safety & Security
  • Community Living
  • Advocacy & Engagement

Within each section there are several questions related to that life domain.

You can put a checkmark next to the following options:

  • I can decide with no extra support
  • I need support with my decision
  • I need someone to decide for me

Here is an example of a question from each life domain:

  • Daily Life & Employment—Do I plan what my day will look like?
  • Healthy Living—Can I make health/medical choices for my day-to-day well-being?
  • Social & Spirituality—Do I make choices about what to do and who to spend time with?
  • Safety & Security—Do I know who to contact if I feel like I’m in danger, being exploited, or being treated unfairly? (police, attorney, trusted friend)
  • Community Living—Do I decide where I live and who I live with?
  • Advocacy & Engagement—Do I decide who I want information shared with?

Using this tool, the person decides what level of support they want in different situations. It finds the balance of support that a person is comfortable with while exploring many different situations that we all encounter in life and can be used during or prior to an ISP planning meeting.

Supported decision-making is an important accommodation available to someone who may need additional assistance to gather information, ask questions, evaluate options, or communicate a decision to others. In particular, it can be a great alternative to guardianship, and the tools we’ve shared explore this in further detail. Below are some additional resources if you are interested in exploring more information.

About the Authors

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.

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.

A woman wearing a grey turtleneck sweater. She has long brown hair in a braid.
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Supports that Lead Toward a Person’s Good Life

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.

Additional Resources

Kevin talks integrated support star
Paula using trajectory
LifeCourse website

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.

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Self-Advocate Voices and Choices in Planning 

A woman looking at a wall with two arrows, one pointing right and one pointing left

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?”

A white man with short dark hair and a short beard and moustache. He wears a blue polo shirt over a white shirt and a pair of glasses with clear frames.

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.

A white woman with short dark hair. She is wearing a grey t-shirt and stands in a kitchen in front of cupboards, a recipe book, and a bar with cooking utensils

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.

Nicholas Kaasa

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.

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Listening to Support How Someone Wants to Plan

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.

A person wearing glasses in a wheelchair, drinking from a mug

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.

 
Two women sitting on a park bench talking.

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.

Three women in coats holding paper coffee cups, talking and smiling

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.

A person with a beard pointing at a white board covered in post it notes

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.

A woman using a laptop

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.

Jen Dibello in front of trees.

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.

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Supporting People Experiencing Chronic Pain

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.
A woman wearing a grey turtleneck sweater. She has long brown hair in a braid.
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.
 

1https://pubmed.ncbi.nlm.nih.gov/21107061/

2https://www.health.harvard.edu/mind-and-mood/depression-and-pain

3https://pubmed.ncbi.nlm.nih.gov/20387264/

4https://www.practicalpainmanagement.com/pain-doctor-cultural-competence-matters

 

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ISP Section Feature: Differences

Differences- A Small but Mighty ISP Section

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.

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Tips for Supporting Youth in Foster Care – Part 3 of 3

A cartoon graphic of a family hugging each other

Part 3 of 3: Supporting the Foster Provider

Being a Foster Provider requires a well-rounded skill set. Like Services Coordinators, Foster Providers support the whole team, not just the youth. This can include the family, the Services Coordinator, other supporters on the ISP team (including medical, mental health, and educational providers) and in some cases, Child Welfare.
 
The first article in this series was dedicated to helping youth navigate life in foster care. The second article in the series illustrated how important it is for families and youth to receive consistent and person-centered support when exploring the option of foster care. The last article in the series is focused on Services Coordinators can develop trusting relationships with Foster Providers and help them maintain a wide variety of skills.

Be Resourceful

Ensure the Foster Provider knows what their role is in the youth’s life, as well as the role of other on the team, including your role as the Services Coordinator. These conversations are best held in person (if possible) to connect about the importance of supporting a youth physically, emotionally, and spiritually. The donut sort is one possible tool for facilitating and recording this conversation. In addition, bring information about: 
 
  • Oregon Administrative Rules for Foster Care
  • Local community resources (Fun/free activities, medical/mental health resources, etc.) 
  • Monitoring schedules that your CDDP may have (Behavioral, medical, financial, ISP) 
  • Blank copies of ISP documents for review 
  • Your information and the best time to get a hold of you 
  • The Foster Care Certifier’s information 
The more knowledge a Foster Provider has, the more they will be prepared and ready to help the youth navigate through life during a potentially stressful time. The Foster Provider may have complex questions for you, especially if they are new to providing care and working with IDD Services. When I was a Services Coordinator, I often received many different questions and concerns, including insurance coverage for medical equipment, funding for Foster Care homes, and individualized questions about the youth they are supporting.
  
If you are feeling overwhelmed or not ready to answer difficult questions, think about bringing another Services Coordinator with you when you visit to help facilitate these conversations. This can also be a great opportunity to speak with your supervisor about training opportunities or continuing education for the Foster Provider or yourself.
 
Remember, you do not need to have the answer to every question. If you are not sure what the answer is, it is okay to say that you don’t know. If you say you will follow up with more information, make sure to do so. Be clear when communicating what the Foster Provider can expect from you, including how long it may take to hear back.

Training and Continuing Education

Foster Care training is an important part of the process of becoming a Foster Care Provider. Each Foster Provider has a unique set of skills and life experiences which can enable them to understand and support a youth in their home. It is important to build upon these skills and experiences regularly. 
 
Foster Providers should be equipped with the tools they need to address any complex situations that may arise. Training also providers the Foster Provider opportunities to help the youth grow and develop new skills.
 
Since Foster Providers may not be aware of local trainings or continuing education opportunities, provide them with resources regularly. Here are some resources within Oregon that may be helpful:
 
  • The Arc Oregon/OTAC Training
  • Oregon Department of Human Services (ODHS) Foster Provider Trainings 
    • Live online trainings for Foster Providers and Adoptive Parents. Training sessions range between 1-3 hours long and are hosted on Zoom. 
  • Foster Club Training 
    • FosterClub is a national network for young people in foster care. It provides young people in foster care an opportunity to connect and gain support from their peers. The non-profit organization also provides online training and resources for resource parents. 
  • Child Trauma Academy 
    • CTA works to improve the lives of high-risk children through direct service, research, and education. 
  • Trauma Informed Oregon 
    • Trauma Informed Oregon is a wealth of information about trauma informed supports, practices, and resources from across the state. It includes free online training modules introducing Trauma Informed Care.  
  • Foster Parent Lending Library 
    • The Oregon Post Adoption Resource Center (ORPARC) has a wonderful online Lending Library that is free to be used by Oregon Resource Parents, Relative Resource Parents, and Pre-Adoptive, Guardianship and Adoptive Parents.​ 
  • Foster Parent College 
    • Interactive multimedia training courses for foster providers and adoptive parents.

Build Positive Relationships

The relationship between the Services Coordinator and the Foster Provider is very important and can directly impact everyone in the youth’s life. However, building a strong professional relationship takes time and effort. We have the opportunity to regularly build and strengthen our connection with Foster Providers by:
  • Providing clear expectations and consistent follow through
  • Keeping your commitments
  • Asking questions and listening
  • Providing resources regularly
  • Offering assistance
  • Checking in frequently, using their preferred method of communication
  • Recognizing the work that they do and sharing appreciation for it

Conclusion:

Foster Providers have the ability to offer a loving and nurturing home where each child can feel safe and celebrated for their unique gifts. As Services Coordinators, we have the responsibility of actively supporting both prospective and current Foster Providers. By doing this, we can make a difference in a youth’s life and work towards increasing their quality of life.

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Tips for Supporting Youth in Foster Care – Part 2 of 3

A cartoon graphic of a family hugging each other

Part 2 of 3

Some families that are supported by IDD Services and their Community Developmental Disabilities Programs (CDDP) may choose foster care as an alternative to their child or loved one living in the family home. This difficult decision is very personal and can be a confusing and challenging time for families and youth.
 
The first article in this series was dedicated to helping the youth navigate life in foster care. The purpose of this article is to illustrate how important it is for families and youth to receive consistent and person-centered support when exploring the option of foster care.
 
Many families do not receive much information, training, or resources about foster care or how it can benefit the youth and/or the family. The family often relies on the Services Coordinator to provide information and choice counseling on this subject. Many youth receiving supports from IDD Services need additional help, most often with medical, behavioral, or other complex needs. At times, these needs can be overwhelming for a family, and they are not aware of the support they can receive. This can be extremely stressful and traumatic for families when they are not sure where to go for additional help. Foster care is an important resource that families can access.

Building Trust:

Trustworthiness and transparency is one of the key principles of Trauma Informed Care.
 
Ensure the family has a voice in the planning process and feels safe to speak up. Families that have accessed multiple systems for assistance may experience trauma around the planning process. The topic of foster care can activate specific traumatic feelings for some, such as fear, distrust, anxiety, and stress, or conflict with their cultural values and practices of caring for a loved one with a disability. It is important to build trust with the family while navigating through these difficult and uncertain times. 
 
  • Use Active Listening: Truly listen to the family and youth when they express their dreams, hopes, fears, and concerns for foster care and the future. Active listening keeps you engaged with your conversation partner in a positive way. It also involves paraphrasing and reflecting what is said and avoiding judgement and advice. 
 
  • Be Dependable: Be open, honest, and dependable. Families may look to you for advice or to help advocate for their rights or their child’s rights. Navigating multiple systems can be difficult for families. Be aware that systems of support (such as IDD Services, Medical Systems, and Mental Health Services) can inadvertently cause trauma. This ‘systems trauma’ can be elevated for families in these situations; ensure that you are following through with plans or commitments you make.
 
  • Have Empathy: Understand that the family you’re working with may experience life differently than you. Their experiences can often be complex and involve many factors you are not aware of. Offer a caring, understanding, and empowering environment for them. While offering a safe space for the family, remember to take care of yourself. Compassion fatigue and secondary trauma can affect emotional, mental, and physical health. Learn more about workforce wellness at Trauma Informed Oregon.

Working as a Team

Occasionally, outside support may be used in complex situations. For example, a youth who has many goals and a team with different perspectives may choose to access Wraparound Services. Wraparound is a unique program that guides youth and families in a goal-oriented approach. Different counties may have programs that look similar and support the team to be family-driven and person-centered.  
 
Everyone on the team benefits from clear and consistent communication. Depending on the youth’s needs, meetings may need to happen as often as once a week, or as little as once a month. During the planning process, the family may like additional check-ins from the SC to provide reassurance and promote trust.

Ongoing Support

Family planning and support will be ongoing after the youth moves into a foster home. In fact, this may be the most important time of the whole process. The youth and family may feel a variety of emotions during this time. This is the time to be creative about offering support to the family.
 
  • Encourage the provider to send fun photos of the youth engaging of activities that they enjoy. For example, if they are on the High School basketball team, snap photos of them playing and send to the family.
 
  • Send fun resources via email to the family and provider to encourage community engagement with the youth. There are lots of fun opportunities to be creative with this and tailor the experience to the family’s heritage and culture. For example, if the family celebrates Día de los Muertos, find a local celebration that can be enjoyed by the whole family. Occasionally, a foster provider and the youth may not share the same values, culture, or heritage. It is important to support the youth with their culture, even if it is different than the providers.
 
  • Promote communication between the family and youth by encouraging scheduled phone or video visits. This can be a great way for the SC to catch up with the youth also! The donut sort can be a creative way to plan and make sure everyone’s voice is heard. Working and not working can also be a helpful way to record different perspectives and creatively problem solve.

Conclusion:

The families and youth you are supporting will need a variety of different supports during this difficult time. Building trust, team collaboration, and ongoing support are just a few of the building blocks that make up the whole pyramid of support. Each family dynamic is unique, and we have the opportunity help families learn, grow, and develop skills together.

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Tips for Supporting Youth in Foster Care – Part 1 of 3

A cartoon graphic of a family hugging each other

Part 1 of 3

Many Services Coordinators (SC) work with youth who live in a foster care home, served by Oregon’s Department of Human Services, Office of Developmental Disabilities Services (ODDS). Often, there is a lack of training for Service Coordinators around best practices for supporting these children, families, and providers. This can affect the way youth living in DD certified foster homes are supported.
 
The purpose of this three-part series is to:
  • Recognize and honor relationships and networks of support in the youth’s life, which can often be complex.
  • Share effective approaches to support youth, families, and providers; and
  • Understand the significant role of the Services Coordinator in helping someone live their best life.
Foster homes are designed to be a structured, family-like environment that youth can live in short-term or long-term. There are specific monitoring requirements to help ensure health and safety risks are being addressed.
 
A parent or guardian may face a difficult decision and voluntarily choose to have their child or loved one move to a foster care setting. Other times, this decision is court-mandated by the Oregon Department of Human Services. Whether a move to a foster home is voluntary or court-mandated, it does pose a risk of trauma to the youth. This may impact the youth in many ways. When I worked as a Services Coordinator, I supported a child who went through multiple moves in two years, which negatively affected his mental health. He was not able to form stable bonds with foster providers and could not consistently engage in skill-building. Trauma-informed care is essential when supporting youth in foster care.
 
It can be difficult to balance the expectations of the family with the needs of the child. Services Coordinators often support three different entities throughout this process: the youth, the family, and the foster provider. It is important to focus on the youth and prioritize their needs to ensure they maintain their sense of safety, self, and well-being.

Support with Transitions

Moving into a new foster home can be a confusing and potentially painful time for youth. As a Services Coordinator, it is important to facilitate a conversation between the youth and the family about what foster care is and how they would like to be supported.
 
While the family is often making the decision for the youth, ultimately, we are supporting the youth and need to ensure their voice is heard and their needs are met. It is crucial to build trust and communication with the young person, to create a more trauma-informed move as well as support their positive trajectory to adulthood. Consider building a One Page Profile with the youth, focused on the move. This can help the youth be more involved and amplify their voice, perspective, and preferences.

Communication and Continued Connection with Family

During the planning process, speak with the youth, family, and foster provider about communication expectations. The youth should continue to be supported by their family, even while in a foster care setting. This can look very different for each family. Some families choose to call every day, and some have a specific time they call during the week. Some families choose to take the youth to every doctor’s appointment, while others may have the foster provider take on this responsibility. Sometimes families have monthly planned outings, while others may be more spontaneous. Whatever is decided, it should be in the best interest of the youth, to support them in their new home and make sure they feel loved and cared for.
 
The Services Coordinator may need to help facilitate communication and planning with the youth and others on their support team. It can be helpful to refer to the Trajectory to help everyone focus on the goal of helping the youth be happy and healthy. This tool can be especially helpful if disagreements or strong emotions begin to derail the conversation.
 
Be creative with planning continued family connections. Some youth like to video call their parents nightly, and this could become a routine that is important to them. Drawing pictures and sending mail can also be a fun way to keep in touch and allow the youth to embrace creativity.
 
When supporting a youth who has limited family connections, and/or an ODHS Guardian, the youth’s level of trauma will likely be higher. Services Coordinators may need to “think outside of the box” to prioritize physical and emotional safety around family connections. Some things to consider when working with a youth who has limited family connections:
 
  • Does the youth have any close friends or siblings they can connect with?
  • How often does the ODHS Guardian connect with the youth and what is their relationship like? Can you collaborate with the guardian to ensure that the youth has multiple trusted adults in their life? Can visits or communication with trusted adults be increased?
  • How often does the youth attend events where they can make friends? How are those going?
  • Do they have any safe distant relatives (Aunts, Uncles, Cousins, etc.) that can be contacted and brought into their life?
The definition of family can be broad and looks different for everyone. As Services Coordinators, we should recognize this and help the youth feel supported and whole in life. Consider using the Integrated Supports Star tool to help visually map out and explore important connections and possibilities with youth you are supporting
Using the Trajectory Tool to Support Youth in Foster Care
 
Download Henry’s Trajectory – this example trajectory demonstrates how the trajectory tool might be used to support a youth and their family and they prepare for a move into a foster care setting
 
Inclusive support is essential. While reviewing potential foster providers, chat about any important considerations the youth has (Cultural, Religious, Medical, LGBTQ+, etc.). Youth may have topics they don’t feel comfortable sharing with their existing family or potential new supporters, such as sexuality or gender expression. You might need to have more than one conversation to ensure safety and privacy. Ask the youth if they would like to invite another trusted adult they feel comfortable with into the discussion. A LifeCourse Trajectory can be very helpful in identifying what the youth and their family wants in this move, and what to avoid.
Give the youth and family information about the potential foster provider. This could include:
  • Where they live
  • If they have pets (pictures are a plus)Other youth in the foster home
  • Everyday life details: What they do for fun, what food they like, if they have any shared interests with the youth, etc.
Extend the opportunity to do a “meet and greet” with the potential provider to see if this home would be a good fit for the youth, and make sure to facilitate the meeting in such a way where the youth can ask questions and give their opinion without pressure. This would be a great time to review the youth’s One Page Profile with the foster provider.
Using a One Page Profile to Support Youth in Foster Care
 
Download Henry’s One Page Profile – this example One Page Profile demonstrates how this tool might be used to support a youth and their family and they get to know a new foster provider.
 
If possible, show pictures of the home including a bedroom, bathroom, and shared spaces. Families may want to complete an in-person tour before deciding. Virtual tours can also be a great option during COVID.
 
If a home is identified as a good fit, start the planning process with the family. This could include:
 
  • Making a visual schedule with the youth of timelines for their upcoming move.
  • Creating Social Stories or other visual tools to help explain to the youth what foster care is and why the transition is happening.
  • Providing opportunities to share hopes and fears as the move date approaches. It is likely the youth and their family may experience anxiety related to the move. Putting together or referring to a LifeCourse Trajectory can be helpful for youth and families to express hopes and fears.
  • Scheduling family or individual therapy sessions with a counselor they can relate to and feel comfortable with.
  • Discussing important relationships in the youth’s life and how they will be maintained throughout this move. If some relationships cannot be maintained, acknowledge the youth’s grieving process with empathy and help connect them with grief/mental health supports.
  • Finding out the youth’s comfort items to bring to the home (blankets, sheets, personal items, favorite foods, etc.)
  • Exploring school and bus schedules.
  • Preparing for Medical Provider transitions and ensuring the youth has an adequate supply of medication for the move.
Because this time can bring up a variety of emotions for the youth, try to limit the number of changes to reduce any additional potential stressors and trauma. For example, if the youth has many friends at their current school and they enjoy attending, advocate for them to stay in that current educational environment.

Conclusion:

There are many ways to support youth in a foster care setting. After working with youth in these settings for many years, I’ve realized that continued communication, advocacy, and consistency builds trust. When we build trust with a youth, family, and foster care provider, we have an increased ability to advocate for the youth and help them build their best life.
 
Foster care can be an important stepping stone in a youth’s life. It gives them a chance to learn skills and reach goals in a different environment while having the opportunity to increase the bond between family and youth or provider and youth. Many of these bonds can last for years and become an essential part of a youth’s life.
 
We will continue to explore this important topic in the coming months. If you have any questions, or would like to collaborate, please reach out to our team!

Meet the author

Emily Canela – OTAC Trainer

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Chosen Services: “List Needs Identified by the Needs Assessment”

Tips for Services Coordinators and Personal Agents

This month, we will take a close look at the Chosen Services section of the ISP, focusing specifically on one box within this section: “List needs identified by the needs assessment that this service will address”. This box can be found for each authorized service in the plan, regardless of funding stream (example: Chosen K plan services, Chosen waiver services, etc.). .

We’ve heard many questions over the years from Services Coordinators and Personal Agents about what information to include in this section, and we hope this article answers a few questions you may still have.

Minimum Expectation
 
It is an expectation that a person’s Oregon ISP will address all needs identified by their needs assessment. In other words, a person’s plan should include all of their support needs, whether those needs are being met by formal services, through other supports, or if a person is declining support at this time. There are many places in the ISP that different support needs are addressed. The section “List needs identified by the needs assessment that this service will address” for authorized services is one important place where support needs are addressed in the plan.
 
At a minimum, the “List needs identified by the needs assessment that this service will address” box should include a list of areas of support that the service will be assisting the person with, unless the need is addressed in another section of the ISP (such as the risk management plan).
 
For example, Alek’s in-home support provider assists him with cooking, laundry, transportation, and money management. Alek is at risk of financial exploitation, so his support need of money management is addressed the risk management section of his ISP. The chosen services section of Alek’s ISP that authorizes his in-home support provider might look something like this:

Writing “ADL/IADL” or “see ONA” is not enough information for this section. Areas of support should be clearly listed. The example above meets the minimum expectation; however, you may consider how much information and detail is helpful, as well as what language works best for the person and their family.

Consider how much detail is helpful

The example above does not provide any information about what best support looks like for Alek. Consider ‘laundry’. Does Alek just need some reminders or instructions on how to do the laundry? Does he need help carrying his clothes to the laundry machine? Does Alek need someone to do laundry for him, while he gives instructions on what clothes need to be washed?

If Alek has been with the same in-home support provider for a while, it may be that they already have a good idea of what support works best for Alek. They may already have worked with Alek to capture this information in his Person Centered Information form or have created instructions for new supporters about this best support. In this case, the example above may be enough information.

However, if the provider is new to Alek, additional information in this section would be extremely helpful. After all, ‘laundry’ only gives an idea of what area Alek wants support, but no clues on what that support should look like. Here’s another, more detailed example of this section:

Why not ‘Copy and Paste’?

Copying information from a person’s needs assessment and pasting it into the “list needs identified by the needs assessment that this service will address” is not considered a best practice. There are a few different reasons for this.

First, the plan belongs to the person. Language used in needs assessments is often technical and not person-centered. If this language is copied into the ISP, it may alienate someone reading their own plan. Instead, we want to consider what words or ways of writing information work best for the person and their family. What language would you want to see if this was your plan? The plan of someone close to you?

Second, the needs assessment is full of systems language and jargon which is not easily understood. A person has a right to understand and direct the contents of their plan. Plain language should be used whenever possible.

Consider the following examples:

Copied and Pasted

Plain language

Elimination, Toilet hygiene- supervision or touching assistance

After using the bathroom, Margret is supported to adjust and fasten her pants. 

Transferring and Positioning- Partial/moderate assistance

Amir needs to grab onto a steady arm that he can pull on when he stands up from a chair, couch, or his bed.

Transportation- substantial/maximal assistance, persons providing support accompany person on bus/van

Lidia gets around town with the support of staff in the accessible agency van. She also uses accessible busses if a supporter rides along.

While copying and pasting is typically not a best practice, you may consider whether ONA assessor notes provide helpful context and details about a person’s support needs. This information may be useful to include in the plan, while still using plain, person-centered language

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Desired Outcomes- Feeling Stuck?

Within the Oregon ISP process, Desired Outcomes are the things the person is interested in doing, learning, trying or accomplishing in the next year or beyond. A Desired Outcome is what a person wants their life to look like. It is the transformation that others can see once a person has taken specific steps or achieved goals.

Sometimes, writing Desired Outcomes is fun. The person and those around them may have a lot of ideas. The person may have a clear vision for what they want. There may also be a lot of excitement and creativity when coming up with Desired Outcomes.

Sometimes, we may feel stuck. Perhaps the person has had the same Desired Outcome year after year. Maybe it’s unclear what the person might want to do, try, or learn. The person may not be interested in anything suggested and struggle to come up with ideas themselves. We may not know where to start.

If you’re feeling stuck when developing Desired Outcomes, we have a few tips for you.

It starts with the person

The plan belongs to the person and so do their Desired Outcomes. Even when we do a lot of work to put the plan together, it’s still their plan- not ours. That’s why Desired Outcomes begin with the person:

  • What is the person telling us, with words or otherwise, about what they want to do? About what they want more or less of in their life? About their long-term hopes, dreams, and aspirations?
  • Are we listening to all the ways a person may be communicating their perspective? If we’re not sure of how someone communicates this perspective- who in their life can support us to better understand?
  • Is there a clear connection between the Desired Outcome and what is ‘important TO’ the person? Do the Desired Outcomes reflect the person’s vision of their own ‘good life’?

Each of us are the #1 expert in our own life. This means that we are the best source of information about ourselves. Desired Outcomes are all about the person- who they are, what is important to them, and what direction they want their life to go in

Who else does the person want to plan with?

Often, those closest to the person play an important role in planning- in helping the person communicate their perspective, in encouragement to dream big and imagining new possibilities, and sometimes offering support to make ideas happen. This can include family members, friends and other supporters.
 
Of course, it is a person’s choice who they want to plan with them and about what parts of their life. Being invited to plan with someone is an honor and important role.
Consider:
  • Have you ever been encouraged by a friend or family member to try something new? Did this lead to a new interest, passion, or skill?
  • Would all your friends or family agree with the things you want to do, try, and learn in the next year? Does this impact who you might want to invite to plan with you?
  • If fears or doubts are holding teams back- are we supporting the team to feel heard so we can move forward together? Are we able to identify and articulate the ‘why’ or ‘important to’ behind what a person is sharing with us?

'Important TO' is key

We each have things that are important to us. They come from our own perspective- those things that give us happiness, comfort, and fulfillment. If we are truly recording the person’s perspective in the Person-Centered Information Form, this can be a useful place to look for conversation-starting ideas.
 
Understanding a person’s ‘important to’s’ is not a one-time conversation. As supporters, we are constantly seeking to better understand who someone is and what’s important to them.
 
Each conversation, each interaction is an opportunity to better understand someone else.
 
Have you ever had the experience of purchasing a new vehicle and then suddenly noticing just how many of these cars are on the road? As humans, we tend to notice what we are focused on or paying attention to. When we keep Desired Outcomes on the forefront of our minds, we will naturally have more ideas and notice more opportunities.
 
Desired Outcomes don’t have to be only an annual conversation. Instead, as we learn new things and better understand the person and what is important to them throughout the year, we can dig deeper and have more meaningful conversations.
If you’re looking for more resources on Desired Outcomes, check out: