Category: Pipelines

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Trauma-Informed ISP Meetings

Silhouette of a face with flowers blooming from their mind

Trauma-Informed ISP Meetings

Lindsay Dutton | The Arc Oregon

Trauma-Informed Care & ISP Meetings

People have many different experiences with ISP planning meetings. Some people look forward to their meetings. For others, these meetings may be a source of anxiety. Some may not want to attend their meeting at all.

Recognizing that many people have experienced trauma is an important step in being able to create more trauma-informed meetings and conversations. We do not need to know the details of a person’s trauma history to be trauma informed. The goal is to create an environment that promotes a person’s well-being and reduces the risk of re-traumatization. remaining

SAMHSA’s 4 Rs of Trauma-Informed Approaches

Realize the widespread impact of trauma and understand the potential paths for recovery

Recognize the signs of trauma in people, families, staff, and others involved in systems

Respond by integrating knowledge about trauma into all areas of practice and policy

Resist re-traumatization

SAMSA outlines 6 principles of trauma informed care.

Safety

Trustworthiness & Transparency

Peer Support

Collaboration & Mutuality

Cultural, Historical & Gender Issues

Empowerment, Voice & Choice

These principles each can give us ideas of how to make ISP meetings more trauma informed. Consider the questions below. 

1. Safety

  • Does the person feel safe at the meeting? 
  • Are they comfortable with the people that are in the room? 
  • Do they have items that would help make them more at ease (fidgets, coloring pages, drinks, snacks)?
  • Can we start the meeting with something positive or fun (one page profile, icebreaker, etc.)?  

2. Trust & Transparency

  • Does the person know what will be discussed? Have they been provided with an agenda?
  • Does the person know why we are asking specific questions? Do they know that they do not need to answer every question?
  • Have we offered the option to end the meeting at any time or take a break? 

3. Peer Support

  • What options have been provided about who can attend the meeting?
  • Would connecting with an advocate or someone with lived experience be helpful? 

4. Collaboration

  • What would it look like for the person to lead their meeting? What parts of the meeting might the person be interested in taking charge of?
  • Does the person have the support they need to lead part or all their meeting (extra time, communication support, support to prepare, etc.)?
  • Are we planning WITH the person or FOR the person? 

5. Voice & Choice

  • When planning, does the person have real choice about where they want to live and how they want to be supported? Are we taking the time to ensure the person understands their choices? How they communicate these choices?
  • Have we asked the person what they want their meeting to look like? How they want to be involved? What support they want?
  • Does the person know that they can make changes to the plan at any time? Do they know who to talk to if they want a change?
  • Is there anything the person does not want to discuss? What topics are off the table?

6. Cultural Awareness

  • Is the person’s identity being honored and respected?
  • How does the person engage with their culture? Is this reflected in the way we plan together?
  • How can we recognize and address challenges faced by people from diverse cultural, historical, and gender backgrounds? 
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Communication and Individual Support Planning

Image of different hands communicating various messages

Communication and Individual Support Planning

Jennie Heidrick | Rooted in Care Consulting, LLC.
Lindsay Dutton | The Arc Oregon

Communication Matters

Communication is key to planning. It helps people plan together and share hopes, dreams, and desires. When a person’s communication is supported, the plan is more likely to reflect who they are and what they hope for. 

People communicate in many ways . We might talk, write, sign, or show things with our body or actions. Communication goes both ways—it is about how a person shares information (expressive communication) and how they understand it (receptive communication). Sometimes supporting communication takes extra time or creative thinking. That extra time and creativity is essential! It helps planning happen in a way that works for the person. 

Expressive Communication
Image of a black woman getting the mail out of a mailbox
Receptive Communication

Tips for Planning

Planning can be challenging when there are barriers to communication. Most people would be frustrated if others didn’t understand them, made assumptions about what they understood, or weren’t taking the time to listen.

If you are a supporter, there are many ways to prepare for a planning meeting:

  • Learn and understand the person’s communication. This includes facial expressions, gestures, actions, and body language. The Communication Chart can help others understand the person’s communication. It helps others know how to best support the person in different situations.
  • Use communication tools. This could be as simple as a letter or picture board or as complex as a computer-based system. If considering assistive technology, the AT discussion tool can be a great place to start.
  • Listen to the person and encourage sharing. For example, if pictures help a person understand information, have photos ready. What else helps the person feel comfortable sharing?

If you have an ISP, there are many ways to prepare for your meeting:

  • Share with your team how you best communicate. You could build a one-page “communication profile” or get together with your team before your meeting to share what works best for you.
  • Have a meeting agenda. You could create it yourself or ask your team to help. You can add “communication checkpoints”. These are times to ask questions and make sure everything has been shared in a way that works for you.
  • Make a list of things that are important to you. It could be handwritten, typed, or even a collage of pictures. You can share this list with your team.

Visit our website for more tools and resources for planning!

About the term "non-verbal"

Sometimes, when a person does not use words to communicate, they are referred to as “non-verbal.” Unfortunately, this term can lead to assumptions about the person. Others may assume that the person does not understand. They might assume the person is not able to plan. They could assume that this person cannot make their own decisions.

When we hear the term “non-verbal” used to describe someone, what else might we say? Shifting away from this language can challenge assumptions. For example, instead of saying “Francine is non-verbal,” you could say “Francine communicates by using gestures and some ASL.” The second statement helps us understand how Francine communicates. It may help others see Francine as someone who is able to plan and share her own perspective.

Jordyn Zimmerman is a disability and education advocate. She has first hand experience with Augmentative and Alternative Communication (AAC). She is also the subject of the recent documentary, This Is Not About Me. In an article that discusses the documentary, Jordyn states:

“Inclusion means everyone participating together and feeling a sense of belonging. Successful inclusion isn’t about everyone doing the same thing or doing everything perfectly, but people share the same outcome—though, how they get there may be different. The entire community must collaborate and embrace this idea.” (Des Roches Rose, 2021)

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Support with Decision Making- Tools and Resources

Support with Decision Making- Tools and Resources

Jennie Heidrick | Rooted in Care Consulting, LLC

Support with Decision Making

We all get support with making decisions, both big and small. Someone buying their first car might ask a family friend for advice. Someone deciding where to go to dinner might look up restaurants on their phone while talking with their partner.

Picture of ODDS's Self-Advocate Guide

Supported decision making (SDM) can look like many different things. It can include writing out a Pros/Cons list with an older sibling or parent to make a decision about an upcoming vacation. It might look like using SDM tools when meeting with a Services Coordinator or Personal Agent to explore accessible housing options.

Supported decision making (SDM) is all about people making their own choices with support. This support comes from trusted supporters like friends, family, or professionals that the person chooses to plan with. These supporters help the person understand their options and communicate their decisions.

Making decisions is a big part of the Individual Support Planning (ISP) process. This is why SDM is important to so many people. SDM focuses on what works best for the person to make informed decisions.

Sometimes, ISP teams can focus more on negative outcomes. Understanding positive outcomes is just as important. Take, for example, a young person who wants to learn to drive. We might immediately think of risks such as getting in a car accident. Driving can also lead to positive things, such as more independence, more opportunities or even fun road trips. Recognizing the positive outcomes is also part of making an informed decision.

Think about making decisions in your life. What helps you make decisions?

  • Do you need time to think about options?
  • Do you prefer written information or pictures?
  • Would you rather talk about options with someone your trust?
  • Who do you want to talk to? Who do you trust for help with making decisions?

Are their paid supporters who you included? This could be a doctor, case manager, or others.

Learn more about Supported Decision Making

It can be helpful to hear from people who are already using SDM. The videos below are from advocates, sharing about their experiences:

There are also helpful websites that offer SDM resources and tools:

The Arc Oregon- Supported Decision Making Webpage: This page offers a resources and information SDM. This includes downloadable one-page resources about SDM, available in English, Spanish, Russian, and Vietnamese.

LifeCourse Nexus- Supported Decision-Making Tools and Examples: This webpage offers tools for planning and exploring in the area of decision making. It offers several tools, and well and downloadable examples of SDM agreements. Resources are available in both Spanish and English

Oregon Department of Human Services- Supported Decision-Making: This webpage offers several resources, including flyers about SDM for both people and families and a link to the Employment First Podcast episode about Supported Decision Making.

ACLU: How to Make a SDM agreement: At this webpage you can download “How to Make a Supported Decision-Making Agreement: A Guide for People with Disabilities”

National Resource Center for Supported Decision-Making: This website focuses on SDM across the United States. It provides resources, tools, stories, newsletters, webinars and state level information.

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Advocate Spotlight: Dayna Davis

One person interviewed by another

Advocate Spotlight: Dayna Davis

Interview by Nicholas Kaasa | The Arc Oregon

About Dayna

Dayna Davis is a passionate self-advocate for people experiencing disabilities. She lives in Eugene and is a founding member of the Oregon Self Advocacy Coalition (OSAC).

She is proud of the work she has done and the other advocates she has worked with. “I am excited to see the change and positive outcomes that our future advocacy will bring.”

At the beginning of our interview, Dayna shared “I am excited about this conversation because I want to tell the readers how I direct my ISP.”

What does your Individual Support Plan (ISP) mean to you?

“[My ISP] means that we talked about what I want. It is consumer-driven support.”

Dayna expressed concern that not everyone’s ISP planning meetings were driven by the person. This means that the person and their choices may not be at the center of planning. She mentioned several barriers to this, such as planning teams not taking the time to get to know the person and what they want.

She hopes that professionals can return to planning that centers the person, their life, and their choices. She wants to remind these professionals that it is about their clients. “Sometimes people need guidance to discover what they want.”

Dayna also mentioned the Oregon Needs Assessment (ONA), which can sometimes overtake some planning conversations. She shared that everyone who plans with her needs to know “that I am a person, and I do know what I need. It’s my life that we’re talking about.”

To Dayna, good support means being listened to and respected. She shared that in her life, good support goes beyond providing assistance. It also gives her a sense of belonging and connection, which she has found in her current natural supports. “I appreciate the deeper respect I experience with those who naturally support me; it’s like being a part of a family, and they listen to what I have to say.”

When asked if she thought that planning was important, Dayna shared “Oh, 100%. How can planning not be important? [Not planning] is like going to breakfast and having cereal without milk, you know?”

What advice do you have for people planning using the ISP?

“Think very long and express to the team, what do you want? What makes you excited and try to convey your hopes and your dreams to your team.”

At the same time, Dayna advises people that “if you mess up don’t be so hard on yourself.”

What advice do you have for other advocates?

“It won’t be easy as you start to advocate but once you start to advocate and ignore your nervous feelings about advocating [it gets easier]. When you continuously advocate, it will get easier. Trust me.”

Dayna encourages advocates to speak up for what they know is right and to stand firm. “Keep advocating.”

Dayna Davis being interviewed over Zoom by Nicholas Kaasa of The Arc Oregon.
Dayna Davis being interviewed over Zoom by Nicholas Kaasa of The Arc Oregon.
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What is in a Support Document?

Image of a document

Support Documents: Protocols, Safety Plans, and More!

Support documents are written instructions. They tell supporters HOW to support a person in a way that works for the person. This allows support to be consistent and effective. It also makes sure that supports honor the person and their way of life.

Often, support documents address serious risks. They focus on prevention and how supporters should respond in different situations. Examples include protocols, safety plans, and financial plans.

Support documents are created in collaboration with the person. Much of the time they are written by paid supporters. This includes foster providers, residential providers, work providers and other supporters.

These written instructions are specific to the location where they support the person (home, work, community, etc.).

Support documents are written in a way that they are easily understood by supporters and the person.

Did you know?

Several protocol templates are available at the Oregon ISP website. 

What is in Support Documents?

Support documents give instructions around the best way to support someone. Because each person is different, “best support” looks different for each person. Each support document is unique to the person. The person’s perspectives and preferences will be reflected in the support document, as well as their support needs.

When support documents give instructions around supporting someone with a known risk, we commonly see five subjects addressed:

  • About the Issue
  • Prevention
  • Signs and Symptoms
  • Support
  • Documentation

Remember:

One size does not fit all! Support is unique to the person. These are general ideas. The specifics will depend on the person. Best support is a balance between important TO and Important FOR that works for the person. Learn more in our past article.

Click through the five subjects below to learn more.

About the Issue

Context is important. It helps supporters understand what the issue looks like in the person’s life. It answers the question: What does this risk mean for this specific person? Sometimes, history about the issue is included.

Remember:

The purpose of including history is to help supporters understand the issue. We want to avoid labels and sharing history that is not helpful or relevant. Instead, focus on what information will be useful to supporters. What background information is needed to provide effective support? Use easy to understand language that is person-centered. Want to learn more? Check out our article about plain language.

Consider:

How does the person already support themselves? Including this information helps avoid over supporting the person. How can the person’s preferences for support be highlighted? These preferences should appear throughout the support document.

Prevention

Proactive, preventative steps are often critical. These help to prevent or minimize harm to the person. Supporters should have clear instructions for these support strategies.

Remember:

Each of us has a perspective on what support works and does not work for us. It is critical for people to be involved in the development of their own support documents. If the person’s perspective is not included, support documents may not work in the person’s life.

Quick Tip:

Some strategies for support rely on documentation. One example is tracking how much water someone is drinking. Be sure there are clear steps for recording information. This includes where documentation is to be kept.

Signs and Symptoms

Supporters need to know what to pay attention to. What are the early warning signs? How do they know if the issue is occurring or about to occur? Consider all the ways that the person communicates. This might include words, facial expressions, and actions.

Remember:

We want to use plain, easy to understand language. If medical terminology needs to be included, it should be explained. Details are helpful. For example, Sage’s safety plan does not just say to “watch for signs of restlessness” (see button above). It gives examples of what this looks like for Sage. This includes:

  • Pulling at their seat belt
  • Drumming on their knees
  • Using the phrase “come on, come on.”

Support

Support includes what supporters should do or what actions they should take. Steps should be specific and provide clear instruction to supporters. A good question to ask is this: If someone is picking up this document for the first time, would they know how to support the person?

Remember:

The support that worked well last year might not work as well today. Over time, we all gain skills and have new interests and preferences. Our support needs change as well. The best support documents are updated as life changes. The change form can be used to document updates and changes to support documents.

Key Concept:

The best support is a balance between important TO and important FOR that works from the person’s perspective. Our goal is never to eliminate all risk in a person’s life. This is impossible. Attempting to do so often looks like over-protection, limiting opportunities, or undue restrictions. Taking risks is an important part of life, and how we all learn, grow, and try new things. Learn more about dignity of risk in our past pipeline article.

Documentation

Finally, we want to consider how supporters should share and write down information after support has been provided. Who should be contacted and when? What might be captured in a progress note? In an incident report?

Remember:

We want to use person-centered language in all documentation. Even when capturing challenging information, how can we avoid using labels? How can we support a person’s choices and positive control?

Examples

Want to read through an example that covers each of these five subjects? Click one of the buttons below.

Latif's Wasp Sting Protocol
Sage's Safety Plan
Mel's Dehydration Protocol

Additional Resources

Creating support documents is an essential role of paid supporters. Below are additional resources around creating these documents:

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Understanding Standard Model Agencies

Understanding Standard Model Agencies

By Lindsay Dutton | The Arc Oregon

Standard Model Agencies & Supporting Desired Outcomes

Over the last year we have seen an increase in the number of questions about the new Standard Model Agency (SMA). We wanted to provide a summary of what SMAs are and how they can support Desired Outcomes. This is an important part of the Oregon Individual Support Plan (ISP) process.

What is a Standard Model Agency?

Standard Model Agencies are a type of organization that hire and support Direct Support Professionals (DSPs). These DSPs are workers that support people with disabilities living in their own or family homes. Standard Model Agencies offer greater day-to-day support to these DSPs. As described by Oregon Administrative Rule, this support might look like:

  • Managing DSP schedules
  • Creating backup plans for staffing
  • Ensuring there is a supervisor on call
  • Offering training for DSPs

There are several requirements for Standard Model Agencies that go beyond what is required by other agencies providing in-home support. The area we want to focus on today is how SMAs support people toward their Desired Outcomes.

Supporting Desired Outcomes: An Important SMA Role

Every ISP has Desired Outcomes. These are what drive the ISP. They answer the question ‘how is life going to look different or better because we planned together?’ These are personal goals; the things that the person is interested in trying, learning, doing, or achieving. These are deeply connected to what is ‘important TO’ the person. They focus on the person’s perspective of their own ‘good life.’

For Standard Model Agencies, supporting the person toward their desired outcomes is a major part of the DSP role. 

We know that many things can support a person toward their desired outcomes:

  • Person’s own strengths and skills
  • Friends and family
  • Community resources
  • Technology

A person can also choose to be supported toward their desired outcomes by their DSP.

In the example provided below, Arash chooses to be supported toward his Desired Outcome by his Personal Agent, his town’s bus system, his friend Jackie, and his DSPs. Each person provides support in a different way, but everyone works together to get Arash to his goal of taking swimming classes.

Desired Outcome:

Arash will take swimming classes at the community pool so that he can learn to swim, practice taking the bus, and spend time with his friend Jackie.

What supports this outcome?

Arash, Personal Agent & DSPs, local bus, Jackie

Key step/goal
Who is responsible

Send Arash & Jackie swimming class schedule

Personal Agent

Select & sign up for a class

Arash & Jackie

Find the bus route that will take Arash to class, practice taking this route together

Arash & DSP

Add all classes to Arash’s calendar and set reminders on his cellphone

Arash & DSP

Take the bus to class

Arash

Learn how to swim

Arash & Jackie

Check in with Arash about the class and help address any challenges or barriers that arise

Arash, DSP & Personal Agent

SMA Responsibility: Implementation Strategies

The Standard Model Agency is then responsible for creating “implementation strategies.” Implementation strategies document how support toward the desired outcome will be provided. They are written by the Standard Model Agency. These are sometimes referred to as Action Plans. They provide clear instructions for DSPs and often go into much more detail than what is in the ISP.

Arash’s Standard Model Agency puts together an Action Plan. This document describes how DSPs will support Arash toward his goal of taking swimming classes. This includes:

  • Details about how DPSs will help Arash find and practice his bus route
  • When and how Arash’s calendar and phone reminder will be set and updated
  • How often DSPs are checking in with Arash about his class
  • How they plan to address any challenges or barriers

While there is not a required form for creating implementation strategies, Action Plan templates on the Oregon ISP website can be used.

SMA Responsibility: Progress Reports

The Standard Model Agency is also responsible for creating quarterly progress reports. These reports are sent to the person’s Services Coordinator or Personal Agent (SC/PA). They contain information about how support toward the person’s desired outcome was provided.

These reports help the SC/PA to know what is going well and if there are any challenges. If there are things not working, the ISP team can help to problem solve.

Arash’s Standard Model Agency sent his Personal Agent a progress report for the months of August, September and October. This report paints the picture of what progress toward Arash’s goal of taking swimming classes has looked like these past three months.

By reading this report, Arash’s Personal Agent knows that:

  • Arash has successfully learned the new route to the community pool with the support of his DSPs. He is now taking the bus route by himself.
  • While Arash’s calendar and phone reminders are up to date, he has forgotten that he had class several times. This happens when his phone is on silent. His DSPs have tried reminding him the day of, but that has not seemed to help.
  • Arash’s Personal Agent checks in with him and his SMA. Through conversation, they decide that Arash’s DSPs will set alarms on his phone 45 minutes before class to remind him. The SMA updates Arash’s Action Plan to reflect these changes

SMA Responsibility: Progress Reports

Want to learn more about Standard Model Agencies? Below are a few in-depth resources provided by the Oregon Office of Developmental Disabilities Services (ODDS):

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The SC/PA and ONA Assessor: Understanding Shared Best Practices

Four hands together as a team

By Jennifer Buss | The Arc Oregon

Understanding Shared Best Practices: The SC/PA and ONA Assessor

In our past two articles, we talked about the Oregon Needs Assessment (ONA) and the Individual Support Plan (ISP), along with the roles of the ONA Assessor and Services Coordinator and Personal Agent (SC/PA). You can find both articles at the Oregon ISP website:

This month, we will focus on best practices shared by SC/PAs and ONA Assessors. These best practices might show up in different ways depending on a person’s role. We will discuss three best practices and give examples of what these might look like in each role

Service Coordinators and Personal Agents

Services Coordinators and Personal Agents (SC/PAs) facilitate planning and coordinate the ISP. They help the person to lead planning conversations. They make sure the ISP reflects who the person is and what they want in their life.

ONA Assessors

The Oregon Needs Assessment (ONA) is a way to understand all the things a person may need support with. ONAs are led by a certified ONA assessor. They know which questions to ask and who to bring into the conversation. SC/PAs lead annual ONAs when there are no changes to support needs.
Learn More

Best Practice: The Person is at the Center

No matter what support a person needs, it is their life. It is their plan. It is their assessment. ONA Assessors and SC/PAs do their job in a way that keeps the person and their perspectives at the center of everything. They make sure that conversations are not just happening around or about the person. Instead, the person is as involved as possible in a way that works for them.

ONA Assessor Example: Lucas is interviewing Mariya and others to complete her ONA. Several people were present with Mariya’s permission, including the residential program manager and lead Direct Support Professional (DSP). Lucas notices that each time he asks a question, one of the support providers respond with an answer. 

After the home manager gives an answer about how Mariya is supported to get dressed, Lucas turns to Mariya. “It sounds like you call the shots about what you want to wear”.

Mariya smiles. “I know what I like and don’t like. I always pick out what to wear.”

Lucas responds. “That’s great! I understand that you also check the weather in the morning. I usually forget to do that and need to go back in and grab an extra layer. Maybe I need to start checking the weather!”

Mariya nods. “I ask Alexa what the weather is. I like to be prepared.”

Lucas continues to turn the conversation back to Mariya each time one of her providers shares information. After several questions, Mariya begins to speak first before others contribute information.

SC/PA Example: Tanya is Sam’s Personal Agent. She gives Sam a call to talk about how they want to plan this year.

“Last year we met at my office.” Tanya reminds Sam. “We can meet here again, or we can meet anywhere you feel the most comfortable. Sometimes I plan with people in their own home, other times I’ve met them at a restaurant or coffee shop. I’ve met people at the park. One time I even planned with someone in the parking lot at their work!”

Sam is quiet for several moments, thinking. Finally, they share “I like the park idea. There’s a park nearby with lots of dogs.”

Tanya also finds out who Sam wants at their planning meeting. They prefer just Tanya to be there, but Sam lets Tanya know it is okay for her to follow up with other people in their life, such as their parents and Personal Support Worker (PSW).

Best Practice: Communication that Works for the Person

People have the right to understand and be a part of every part of planning. This includes needs assessments, making choices, and the plan itself. When supporters communicate information in a way that works for the person, they are supporting a person’s rights.

SC/PAs and ONA Assessors learn how the person best receives information and expresses themselves to others. They adapt their communication to work for the person.

ONA Assessor Example: When Jamie conducts ONA interviews, she uses plain language that works for the person. She avoids profession-specific terms in the ONA Manual, such as “medical impact on ADL/IADL Activities” or “elimination/toileting”. While these terms make sense to her as an ONA Assessor, she uses language that works for the person she is speaking with.

If she notices the person using phrases or words to describe their own support needs, she often mirrors this language. For instance, Aliya refers to catheter and colostomy care as “help using the bathroom”.

While Jamie still asks questions about the specifics of what this support looks like, she begins by asking Aliya “How do you prefer that staff help you with using the bathroom?”.

SC/PA Example: Tao is Greg’s Services Coordinator. When reviewing the Person Centered Information sent to him by Greg’s foster provider, he notices that going on a vacation is important to Greg. The foster provider connected with Greg about places he might want to visit, and Greg appeared interested in walking on the beach, seeing a play in Ashland, and visiting the Oregon Museum of Science and Industry in Portland.

During Greg’s ISP meeting, the team discusses taking a vacation. Tao pulls up short YouTube videos of Cannon Beach, the Oregon Shakespeare Festival, and Oregon Museum of Science and Industry. Tao seems the most excited when watching the video of Cannon Beach.

“It sounds like you want to plan a trip to Cannon Beach? Am I understanding you correctly?” Tao asks Greg.

Greg smiles and shakes his head ‘yes’. Tao, Greg, and his foster provider then begin to plan out key steps for Greg’s vacation.

Best Practice: Trauma-Informed Practices

SC/PAs and ONA Assessors do not need to know the details of a person’s trauma history to be trauma informed. SAMHSA’s four Rs of Trauma-Informed Approaches, shown below, support environments of safety, empowerment, and healing.

Realize the widespread impact of trauma and understand the potential paths for recovery

Recognize the signs trauma in people, families, staff, and others involved in systems

Respond by integrating knowledge about trauma into all areas of practice and policy

Actively resist re-traumatization

ONA Assessor Example: When completing Liam’s file review, Fatima notices that Liam prefers that others do not discuss Obsessive Compulsive Disorder (OCD) with him. Specifically, the term OCD can cause Liam to shut down, so his supporters know to avoid using this language around him. Liam prefers not to discuss this diagnosis in any way, especially with those he does not know well.

At the same time, OCD does impact many aspects of the support that Liam needs. Fatima uses her best judgment and creativity when speaking to Liam about his support needs. She avoids language that could be harmful to Liam while learning as much as she can from him. She also follows up with his brother and his DSPs to get a more complete picture of how OCD impacts his support needs.

SC/PA Example: Miranda is meeting with Ify and her family. She notices that Ify, who was sharing a lot during her meeting, became very quiet when the topic of serious risks was brought up and began fidgeting with her hands.

“I wonder if it might be a good time to take a break” Miranda says to Ify. Ify agrees and seems more relaxed after introducing Miranda to her rabbit, Sir Hopsalot.

Miranda realizes that the way serious risk was brought up this year did not give Ify very much positive control. She makes and writes down a plan for next year:

  • Ask Ify what helps planning feel more comfortable for her (Her rabbit? Fidgets?) 
  • Ask Ify permission to ask her questions about risk
  • Share information with Ify about why I am asking questions about risk
  • Remind Ify that she can decide not to talk about any topic
  • Begin every meeting by reminding Ify that we can take breaks at any time and that she is in charge of deciding when breaks happen and when the meeting is over.

Learning More- Best Practices for Everyone

These best practices are not just for ONA Assessors and Service Coordinators and Personal Agents. They are a part of supporting all people. If you work with people, what this looks like in your specific job depends on what you do. We invite you to explore the resources below and consider how the best practices discussed in this article could show up in your work.

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The SC/PA and ONA Assessor: Working Together to Support a Person’s Good Life

Four hands together as a team

By Jennifer Buss | The Arc Oregon

Last month, we discussed the Oregon Needs Assessment (ONA) and the Oregon Individual Support Plan (ISP). We explored the purposes of these two separate processes and how they work together. You can review this article on our website.

This month, we will discuss the role of the ONA assessor and the Services Coordinator and Personal Agent (SC/PA). ONA assessors and SC/PAs both have a role when planning using the Oregon ISP. Both roles are unique and important.

Services Coordinators and Personal Agents (SC/PAs) facilitate planning and coordinate the ISP. They help the person to lead planning conversations. They make sure the ISP reflects who the person is and what they want in their life.

The Oregon Needs Assessment (ONA) is a way to understand all the things a person may need support with. ONAs are led by a certified ONA assessor. They know which questions to ask and who to bring into the conversation. SC/PAs lead annual ONAs when there are no changes to support needs.

ONA Assessor Role

The following are the core responsibilities of the ONA Assessor:

  • Gather information about a person’s support needs. This includes doing a file review, meeting with the person and speaking to other supporters in the person’s life, and following up with others to get a good picture of support needs.
  • Take a person-centered and trauma-informed approach. Asking about support needs can be difficult. These questions can feel very personal. That’s why ONA Assessors are expected to be sensitive and adapt what they are doing to avoid causing harm.
  • Complete the assessment with accurate information. This information will be used in planning conversations about how a person wants to be supported. This information will also be used in making decisions about what serious risks are in a person’s life. Making sure that the information is accurate is important.

These are areas where the ONA Assessor uses their judgment and creativity, based on guidance and training provided by ODDS:

  • How to describe support needs using strength-based and person-centered language. The assessment belongs to the person. ONA Assessors use their judgment to accurately describe support needs without taking a deficit-based approach.
  • How much to include in “notes”. The items in the ONA assessment have several places for comments. Assessors write notes to include relevant information or give additional context about their selections.

The following are NOT the responsibility of the ONA Assessor:

  • Have close knowledge of the person. The ONA Assessor is not typically someone who has a close relationship with the person. Often, assessors are only involved during the assessment itself. Instead, assessors rely on the person and others in their life who do have that close knowledge.
  • Deciding what goes into the ISP. The ONA assessor only gathers information about what a person may need support with. They don’t decide what a person wants in their life or how they want to be supported- both of these are important parts of the ISP.
  • Writing comments or language intended to be copied and pasted into the ISP. While the assessor attempts to use person-centered language in the assessment, they do not have a close relationship with the person. Information from the assessment will likely need to be adapted to work for the person and their plan.
  • Deciding what is or is not a serious risk. The assessment captures important information that should be considered when assessing risk; however, making decisions about what is or is not a serious risk is not the role of the ONA Assessor. This is the role of the SC/PA.

SC/PA Role

The following are the core responsibilities of the SC/PA:

  • Facilitating planning. This means making sure to understand the person’s perspective and what they want. It also includes understanding perspectives and gathering information from others on the ISP planning team.
  • Create the ISP based on a person’s choices and planning conversations. The SC/PA creates the ISP itself. They also ensure all support needs are addressed somewhere in the plan.
  • Choice Advising. SC/PAs support the person to decide how they want to get support. Reviewing the ONA is helpful to make sure all areas of support are addressed.
  • Deciding what is or is not a serious risk in the plan. The SC/PA facilitates conversations about risk and makes the final determination about serious risks to include in the ISP. They may be using information from the ONA as part of this decision-making process, but it is one piece of information among others. The SC/PA will then include all known, serious risks in the ISP Risk Management Plan.

These are areas where the SC/PA uses their judgment and creativity:

  • How to have choice advising conversations. One approach does not work for everyone. The SC/PA pays attention to what works best for the person, what helps their voice be heard, and helps them be at the centered of planning.
  • How to gather information about potential risk. Does the SC/PA understand the person’s perspective in their life? How are they thinking about what might be just a support need and how to know if something rises to the level of a serious risk? From whom are they getting additional information?
  • How information is being documented in the ISP. This includes using language that works for the person and is easily understood. They make decisions about how much detail to include, especially about things like support needs. They avoid copying and pasting information directly from the ONA.

The following are NOT the responsibility of the SC/PA:

  • Make decisions on behalf of a person. SC/PAs might be supporting someone to make decisions, but deciding for a person is not their role. It’s a person’s plan and a person’s choices- including how the person wants to receive support.
  • Ask an ONA Assessor to complete an ONA in a certain way. This includes what selections to make and what comments to write. An ONA Assessor is trained and certified on completing the ONA. What is included in the ONA is their core responsibility.

Supporting a Good Life

SC/PAs and ONA Assessors have very different roles. Both work together to support the person towards the life they want. Next month, we will explore best practices for ONA Assessors and SC/PAs.

We invite you to explore additional resources related to the ONA and Oregon ISP. As always, reach out to our team with questions or to discuss this topic in more depth.

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ONA & ISP: Working Together to Support a Person’s Good Life

Four hands together as a team

By Jennifer Buss | The Arc Oregon

The Oregon Needs Assessment (ONA) and the Oregon Individual Support Plan (ISP) are two separate processes. They work together, but each has its own purpose and focus. This month, we will explore the purpose of both the ONA and the ISP and how they work together.

Oregon Needs Assessment (ONA)

The Oregon Needs Assessment, or ONA, is a tool that helps to understand what a person needs support with. It asks questions about support needs. The ONA happens once a year or when the person’s needs change. ONAs are led by a certified ONA assessor. They know which questions to ask and who to bring into the conversation. Service Coordinators and Personal Agents (SC/PAs) lead annual ONAs when there are no changes to the person’s support needs.

To learn more about the Oregon Needs Assessment, visit the Oregon Office of Developmental Disabilities (ODDS) ONA webpage.

Oregon Individual Support Plan (ISP)

The Oregon Individual Support Plan, or ISP, is plan that focuses on how the person wants to live a good life. This includes what is important to the person, their dreams and goals, and what support they want.

The person and what they want guides the process of planning. The person also chooses who they want to plan with. This could include friends, family, significant others, and supporters. The Services Coordinator or Personal Agent (SC/PA) helps to guide the planning process. They write the person’s ISP using information about what the person wants, their goals, and the support they would like along the way.

To learn more about the Oregon ISP, visit the Oregon ISP website or the ODDS ISP webpage.

ONA & ISP: What’s the connection?

The ONA is a tool that helps to assess need. It helps to point out areas in a person’s life where they may need support. The ONA does not tell us how a person wants to be supported, if they want support. It just tells us where support may be needed.

For Example: Molly’s ONA shows that she may need support with grocery shopping.

This information is important when planning. While the focus of the ISP the person’s good life, the SC/PA will not forget what a person may want or need to be supported with while getting closer to the life that person wants to live. This means that all areas of support are considered.

For Example: The focus of Molly’s planning is her dream to live in her own apartment in the downtown area. Her Personal Agent will also talk with her about how she wants support for grocery shopping and what that looks like today and in the future when she lives on her own.

Remember, support can look like many different things. Having a need identified in the ONA does not mean that there must be a paid person to address it. It does not even mean that a person must accept support in that area. The question of how support needs are met is a key part of planning that takes place during the person’s ISP development.

This is a very important role of the SC/PA. Sharing information about a person’s many options for getting support and understanding a person’s choice is sometimes referred to as choice advising. Choice advising is a responsibility of the SC/PA and is discussed during the development of the person’s ISP.

For Example: Molly and her Personal Agent explore resources and options available for support with grocery shopping when Molly lives on her own:

  • Molly’s PSW could go to the grocery store with her each week
  • Jan, Molly’s sister, could help Molly put the list together and video call with her as she goes through the grocery store
  • Molly could set reminders on her phone to order groceries through an online delivery service. She could reach out to her PSW if she gets stuck or has questions.
  • One local grocery store offers shopping assistance to shoppers with disabilities on Saturday mornings.

Molly’s ISP will reflect her choice and how she wants to get support with grocery shopping.

The Oregon ISP planning process considers all areas a person may need support with. That is why we would expect to see all needs identified by the Oregon Needs Assessment (ONA) addressed in the ISP- even if a person’s choice is to decline support in one area.

While these support needs would be included in the ISP, we would not expect to see language from the ONA “copy and pasted” in the ISP itself. The plan belongs to the person. Language in the ISP should be easy to understand. It should not use systems language or jargon. For more information, check out our pipeline article on this subject.

Stay Tuned

Next month, we will explore how the role of the ONA assessor looks different from that of the SC/PA. We will provide examples of the SC/PA and ONA assessor’s responsibilities. As always, reach out to our team with questions or to discuss this topic in more depth.
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Advocate Spotlight: Joshua Russell

One person interviewed by another

Interview by Jennie Heidrick | The Arc Oregon

Joshua is a straight shooter and “hard-nosed” advocate from NE Portland who has served on many committees in his time. It’s important to Joshua that people know that you can’t approach every person with a disability in the same way. He prefers straight talk, but also acknowledges that straight talk doesn’t work for everyone.

Joshua has helped bring about change in many ways including helping to usher in policy and law changes to improve services in Oregon. It’s important to him to advocate for people who can’t advocate for themselves, and to give a voice to the voiceless. He feels strongly for those who don’t have a solid support system in place, and that is why he does so much advocacy work. 

When he isn’t busy working on committees and advocating, Joshua is quite the MMA enthusiast and self-proclaimed tech nerd. He also enjoys doing creative writing as well. 

Q: What is important to you about your life right now?  

A: “Well, I just moved to my own place, so I’m getting everything set up. Financial literacy has been on my mind lately so I can be successful living on my own in the future.” 

 

Q: What is something you’ve done that you’re proud of?

A: “I was on the committee who fought for people to be given community living options outside of group and foster homes. I am really proud of being on that committee and getting to work with politicians. It’s probably one of the most important things I’ve done in my advocacy. Now people hear all the options every year during their ISP.”

 

Q: What dreams or goals do you have for the future?  

A: “Moving into my own basement apartment or my own housing. That’s my goal for the next 3-5 years. Then I hope to get people receiving services a proper menu of the services they can receive. I know that it can be helpful, a headache for providers, but it would be beneficial to me so I could see a menu of what is available. As an advocate I hope to see that done in a proper fashion because it would be helpful for less experienced [Personal Agents] as well.”

 

Q: Do you think planning is important?

A: Yes, I do think planning is important, but over planning can also happen which isn’t good. One of my main goals with [the ISP] is to not bite off more than we can chew. When you over plan things can slip through the cracks and not get done properly.” 

 

Q: When you’re planning with someone- what is the most important thing that person can do?

A: “Well, they have to see their perspective then react according to the person’s perspective. Each advocate is going to be different in how they approach things, and their needs are going to be different. They need to view you as the representative. I think that is the best advice I can give someone in the planning stage.”

 

Q: When you’ve planned in the past- what worked well?

A: “I think people appreciate my realism when I’m planning, and my realistic nature about what works and doesn’t work. Some people may not appreciate it, but in terms of advocacy planning, I bring my ‘call it like it is’ approach.”

 

Q: What do you like about your SC/PA/Case Manager? What do they do well?

A: “I just got a new one, but I can speak about my previous experience. I think case managers and PA’s do a good job of getting people together for social outings in their community. They are good at getting advocacy groups together. My PA was really good about that.”

 

Q: What advice would you give to SC/PA/Case Managers around the state?

A: “Learn how to network with your lead PA or case manager over you and learn how to network with your higher ups. Sometimes people will come to you with a problem that is hard to solve, so you need to work with your higher ups so you can problem solve. Learn how to network with your fellow employees and higher ups and solve problems together, such as housing.” 

 

Q: What do you like about your provider? What do they do well?

A: “I think I moved to a very flexible group home. They are very accommodating and help me with problems and I think they have hired good staff. I had a lot of trepidation moving into a group home due to my advocacy work, but here we are.”

 

Q: What advice would you give to providers around the state?

A: “I can speak to group homes and adult foster homes. I would have assistive technology, typing devices, and internet to be on point if they are taking in a resident with a wheelchair. They would need a wheel-in shower. Don’t talk to every resident the same way. Give them a healthy amount of respect in how you talk to them, be flexible, be open to advice and to employment providers. If you are dealing with someone in a wheelchair, you’ll have to get really creative in terms of support.”

 

Q: What do you like about getting support from your family/friend? What do they do well?

A: “I am highly blessed in that area. I have a pastor who advocates for me, a mom who advocates for me. I make sure I give and take a bit. They tend to pound the table harder for me than I do myself and that is a blessing for me. I tend to say I can give that up, let’s just give that up for the sake of not being demanding. I have a really great group of advocates that will fight for me tooth and nail and my heart goes out to people who don’t have that because I don’t know what I would do. I couldn’t do this by myself, it’s too much work so it’s helpful to have their perspective.”

 

Q: What advice would you give to families and friends who support people around the state?

A: “Just keep pushing. Keep chugging along, feeding the engine because it’s going to get really taxing and you’re going to come across a lot of roadblocks. Just keep trying and realize that sometimes it takes the right PA, person, worker, advocate to keep pushing. Keep fighting for yourself, your loved one and try your best. That’s the best advice I can give to family and friends.”

 

Q: What is something important you’ve learned as a self-advocate?

A: “I’ve learned how much language matters in this state. I’ve learned that they put way too much pressure on community support. The state, brokerages, providers put too much pressure on you and your supports to get stuff done. I’ve learned how much language matters to get stuff done. I feel like a lawyer, it takes the right word until the door gets opened. That’s what I’ve learned during my years of advocacy. They put too much pressure on the individual and you have to know the right lingo to get things done. I feel bad for the people that can’t learn the lingo, it’s not their fault, and they should be better served.”

 

Q: What advice would you give to other self-advocates across the state?  

A: “Learn the lingo, don’t be afraid to push back, you’re not being too overbearing. Don’t be afraid to ask to switch case managers if you need to, and just persevere!”

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Advocate Spotlight: Fengxian Balthazaar (Yuàn Fèngxiān 院 凤仙)

One person interviewed by another

Interview by Jennie Heidrick | The Arc Oregon

Fengxian lives in Portland and graduated from Portland State’s Career and Community Studies program in 2020. Born in China and then adopted, Fengxian identifies as transracial and is excited to visit her birth country later this year. Fengxian is actively involved in her community working at Safeway, dog sitting and walking, as well as helping with the family business. 

As a passionate Self-Advocate Fengxian is a member of Self Advocates Taking Action who meet once a month to review bills and new laws. Fengxian wants to help bring change as well as improve services for people who experience disabilities. Fengxian is a very happy and social person who enjoys being with friends and family, providers, and fellow advocates.

Fengxian is an athlete involved in many sports- swimming, bowling, skiing, track and field, basketball- and loves to compete at Special Olympics. Fengxian is looking forward to taking a trip to Washington DC with Special Olympics to talk with congress, advocate, and be a positive influence about inclusive healthcare. 

Q: What is important to you about your life right now?

A: “Have a job at Safeway… Getting ready to go to Washington DC, going to Japan, Shanghai and China this summer. Traveling with sisters and no parents this trip!”

 

Q: What is something you’ve done that you’re proud of?

A: “I went to the 2022 USA Olympic games in Florida- Special Olympics. Competed and brought home a silver medal in swimming. Both parents traveled with the delegation.” 

 

Q: What dreams or goals do you have for the future?

A: “[Have a] job that I like and am passionate about, get married and go on a honeymoon, what other people have… Working to end the marriage penalty. This can take some time.”

 

Q: Do you think planning is important? Why?

A: “You are the leader of your life, many people back in the day didn’t have decision opportunities because they were living in Fairview. I make my choices, but I have support from my family.” 

 

Q: When you’re planning with someone- what is the most important thing that person can do?

A: “During my ISP meetings, my mom sits next to me and she will rephrase it, communicates struggles on my behalf.”

 

Q: When you’ve planned in the past- what worked well? 

A: “Listening and validating my concerns or opinions.”  

 

Q: What do you like about your SC/PA/Case Manager? What do they do well?

A: “They get back to me in a timely manner, schedule things, review the ISP and ONA in an accessible way. My mom sits next to me, with iPad in front and if there is a question or phrase, she will rephrase.”

 

Q: What advice would you give to SC/PA/Case Managers around the state?

A: “Get back to clients and take their concerns seriously because it is their life, don’t think it is funny, crisis happens- not funny.”

 

Q: What do you like about your provider? What do they do well?

A: “They are on time, do stuff and go out in the community.”

 

Q: What advice would you give to providers around the state?

A: “Don’t hire people who are no call, no show.” 

 

Q: What do you like about getting support from your family/friend? What do they do well?

A: “Good relationship with family and two sisters. I support my sisters and they support me.” 

 

Q: What advice would you give to families and friends who support people around the state?

A: “Be there as a listening ear, be there for them if they lost someone/family, traumatic event, don’t go to institutions, ensure choice in where people live. Independent living with natural supports from community. Listen to where the person wants to live.”

  

Q: What is something important you’ve learned as a self-advocate?

A: “My story is a powerful one and my experience may be different than other people’s experiences.”

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Advocate Spotlight: DJ Lamar

One person interviewed by another

Interview by Jennie Heidrick | The Arc Oregon

DJ Lamar lives in Southeast Portland, where he has been DJ’ing for almost 29 years. DJ Lamar is passionate about meeting people and sharing his music with them. He is also a board member of The Arc Portland Metro. 

In his free time, DJ Lamar serves his community through his work with Club Impact, where he volunteers his time as a Bingo caller and shares his music. He likes to regularly eat out at different restaurants, but Applebee’s and Sherri’s are his favorite.

DJ Lamar met with the Oregon ISP project team to share a little bit about his life and recommendations that he has for professionals and others across the state. 

Want to learn more about DJ Lamar and the work he does? Check out his business’s Facebook page to learn about upcoming events or request his DJ Services. 

Photo of DJ Lamar

Q: What is something you’ve done that you’re proud of?  

A: “Oh, good question—I am proud of myself getting out there and doing the things that I like to do. The biggest thing is sharing music and meeting people and all that good stuff, and you know, I just like to do it… Every time I go DJ at different places, they are always happy to see me. At the conference my DJ station was the only one lit up at the UCP family conference. My 70’s and 80’s music was standing out, people enjoyed it!”

 

Q: What dreams or goals do you have for the future?  

A: “I’ve passed all of my goals and now it’s just finishing it up. Next year, when I reach 30 years of DJ’ing I’m throwing a huge party! I would like to continue on The Arc Board.”

 

Q: Do you think planning is important?

A: “Good question. It’s easy if you plan early, a couple months out before any event, including my ISP meeting. That’s why they have planning committees for events.”

 

Q: When you’re planning with someone- what is the most important thing that person can do?

A: “Talk about what we are going to do and what the layout is going to be like. Where it is going to be at, the location. All the things that’s needed.”

 

Q: When you’ve planned in the past- what worked well?

A: “Good question, the timing, on my time.”

 

Q: What advice would you give to SC/PA/Case Managers around the state?

A: “I’d want them to do their best.”

 

Q: What about for providers?

A: “Be on time!”

 

Q: Any advice for families and friends who support people around the state?

A: “Take your time.”

 

Q: What is something important you’ve learned as a self-advocate?

A: “I’ve learned helping out, talking with [other self-advocates] and sharing with them, if it’s needed.” 

 

Q: What advice would you give to other self-advocates across the state?  

A: “All I got to say is please take your time, don’t rush it, if you rush it you might mess up.”

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Assistive Technology

Image of two people using assistive technology

By Jennifer Buss | The Arc Oregon

Technology Support

This month, we want to focus on technology! For many of us, technology allows us to be more independent. If you have a cell phone, think about all the ways it supports you. Do you use it to check the time? Do math using the built in calculator? Call or text a friend? Get reminders for events on your calendar? Set alarms and timers? Checking your emails? Look up addresses? And the list goes on!

Technology is a very important part of planning conversations. This is true no matter how the technology is paid for. For example, the person might pay out-of-pocket, their private insurance might pay, or their plan authorizes payment. No matter what, talking about technology support is important!

Technology can support people in all areas of life. It might help someone connect with others and share their thoughts. It might help someone else get around their house or their community. Let’s look at a few examples found in the Assistive Technology Discussion Tool:

  • Sue Ann chose a call button pendant that she wears at night so she can summon her provider if she falls. She feels a lot safer and more confident about getting up during the night when needed.
  • Blanca uses a medication dosing and reminder device so that she can take her medications independently. It took some planning and support in the beginning, but now the responsibility is completely hers and she says she feels more capable and empowered than ever.
  • Alex uses his tablet as a communication device. His team consulted with a speech therapist to provide technical assistance and training. Now all of Alex’s DSPs support him consistently and his expressive communication skills have skyrocketed!

Exploring Options

When planning, there are often a lot of conversations about what support needs a person may have. Needs assessments are one part of planning that explores support needs in detail.

However, how much time do we take to discuss how a person wants these needs to be met? It’s important to remember, not everyone wants a paid provider to meet every support need. For many people, including Sue Ann and Blanca, technology is an essential alternative to having a support person around all the time, or to support them with everything.

More information about assistive technology, or to explore more ideas, check out the resources below!

Resources to explore assistive technology options:

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Making Changes to your ISP

People in conversation, sitting at a table

By Nicholas Kaasa | The Arc Oregon

You can change your ISP at any time

The Individual Support Plan (ISP) is a living, breathing document. This means that it can and should change with you. After all, life is change! We all have new experiences that help us understand what we want or do not want in our lives. We all grow, learn, and change over time. Even our needs can change over time. Life can also be unexpected, and things may come up that cause us to change our plans. 

Because of this, no one can accurately plan out the next year of their life. Planning must happen annually but it’s also ongoing. We adjust and shift our plans as needed. That is why it is important that the ISP shift and change when needed throughout the plan year.

Changes can be big or small. If a small update is needed, such as adjusting one of your Desired Outcomes (or the “goals” in your plan), you may just need to make a quick call or send a quick email to your Services Coordinator or Personal Agent (SC/PA). If a larger change is needed, such as changing the way you are supported from day to day, you should still start by reaching out to your Services Coordinator or Personal Agent (SC/PA). They can help to bring your planning team back together to make this change with you. Once the team has had a chance to meet and discuss if everyone involved can support the needed changes the SC/PA will complete a change form. 

The ISP planning process is one that takes change into account. Your plan can be changed at any time! The change form helps us document when these changes happen. 

Tips for Advocates

If you have an ISP, the suggestions below are for you!

  • Have you looked at your ISP? You have a right to your plan!
  • If there’s anything in your plan that you don’t understand, your Service Coordinator or Personal Agent can help make sure everything makes sense. You have a right to understand your plan!
  • Is there anything that you want to add? Things can be added to your ISP at any time! This includes new ideas, goals, and support.
  • Is there anything that is not working well in your plan? Your ISP can change at any time! Let your Services Coordinator or Personal Agent know if things are not working well for you.

Tips for Teams

If you are a provider, family, or friend supporting someone in the planning process, the suggestions below are for you!

  • Have proactive conversations. How will you connect with the team about a needed change? Who will fill out the change form? How will you make sure everyone knows and understands their role in supporting the person? Remember, the hardest time to try to figure out HOW to make a change is during the change itself.
  • Pay attention to the person’s perspective. What are they telling you about how the plan is or is not working for them. Remember, not everyone communicates using words. Pay attention to all the ways someone communicates their perspective.
  • For most types of changes, anyone on the planning team can get the conversation started. Review page #48 of the ISP instruction manual for detailed information about different types of changes, who can make different changes, and which changes require approval or notification only.
  • Want to learn more? Watch the ISP change form webinar!

Tips for Services Coordinators/Personal Agents

If you facilitate the ISP planning process, the tips below are for you!

  • Does the person know their ISP can change at any time? If you are planning with a child, does the family know the plan can be updated at any time? Notice, the question is not “did you mention it” or “or did you tell them.” There is a lot of information that is shared during planning conversations and meetings.
  • Talk about making changes throughout the plan year. Be concrete- how can the person or family reach out to you if they are wanting to make a change? What are examples of changes that a person or family might want to make during the plan year?
  • While it may take some work to update the ISP, it is a sign of a healthy and active plan. Consider your own life- what if you had to plan out the entire next year of your life at one time? How would you feel? What thoughts come up? 

Remember: The plan should follow the person and their life, not the other way around.

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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.