OregonISP – Page 2

February 22, 2023February 23, 2023

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?”

Eric Thompson is a self-advocate in Medford, Oregon who is passionate about his work with the Oregon Self Advocacy Coalition and believes everyone should be self-advocates.

Dayna Davis is a self-advocate in Eugene, Oregon who is passionate about advocating for individuals who experience disabilities.

How do the choices we make impact our lives?
Dayna: They impact our lives a lot. It determines the direction we go by the decisions we make.

How would you feel if someone who cared about you made a decision for you that you did not agree with?
Eric: I would be concerned and wonder, are they really listening to me and what I want?

How have you come to understand what it means to take the lead in making decisions in your life?
Dayna: I am continuously finding myself. I am still learning that what matters most is what I want to do with my life. There is a dark side of developmental disability services too. This includes the professional people that advise us and often project their own agenda on us. We need to be our own person, despite our helpers’ ideas of what we can do.

What life expectations have changed as you’ve made decisions about your life?
Eric: By making what I consider the right decisions for me and my life, I’m able to have freedom with the choices that I make.

Have you taken any chances that when looking back on it, may have provided you with opportunities to fail, learn, and grow?
Dayna: During my first job, I failed, learned, and grew from that experience. Now I look where I am today and all that I have done to help OSAC (Oregon Self Advocacy Coalition) be where they are today.

What is your hope for the next generation and their ability to lead the decisions in their lives?
Eric: What I hope for students is that they all can become Self-advocates and teach parents and teachers.

In closing, as someone who sits on both sides of the table and receives services and supports through the same field I work in, I view my services and supports like a roadmap, and informed choices as the tools I need to decipher that, sometimes complicated, roadmap. As supporters, family members, teachers, and Case Managers, it is your job to help us understand those choices so that we as individuals can make the best decisions for our lives. Thank you to Self-advocates Dayna Davis and Eric Thompson, who shared their thoughts and opinions with our team.

About the Author

Nicholas Kaasa joined the ISP training team with The Arc Oregon in February 2021. He has held a variety of positions in Oregon’s DD services system. Most notably, he worked as a part of Full Access team in Eugene as the Community Outreach Advocate. In this role, he focused on local and statewide self-advocacy efforts.

Nicholas has experience working with families and transition age youth, providing information about DD services in Oregon, and engaging in conversations about choice advising with individuals experiencing disabilities and their families. His passions include person-centered practices and advocating for those, like himself, who experience disabilities.

October 31, 2022February 24, 2023

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.

Amber is a mother of two school-age children. She finds it easiest to plan when the kids are at school. She prefers meeting in the morning, after she has had her coffee.

David lost his father three years ago in the late fall. He and his family are still getting used to the holidays without his father; this is a very challenging time of year for them. They do not want to plan in November, December, or January.

Where

When working on a plan with a person, consider what will make that person comfortable while planning. Ask the person where they might want to have the planning meeting. Would they want to have it done at home, work, or in the park? Where is the person most comfortable to have more personal or private conversations, if needed? Prioritizing accessible environments is important for anyone who uses mobility supports.

Joanne feels more comfortable talking about the future when she’s doing something active. Joanne meets at the park with her PA so that they can walk and talk together.

Dexter doesn’t want to travel to meet up with their support team and also doesn’t want to have multiple people inside their home at once. Dexter prefers to hang out on their back patio when planning with others.

With Whom

Check in and learn who the person wants to have involved in their planning and at what times. There are some people I know who will not talk about personal things in front of their family members, but they will talk about it with their Services Coordinator. Schedule separate meetings, if needed, to prioritize the person’s comfort and consider power dynamics among the team to ensure the person is empowered and supported in their decision-making while planning.

Madeline prefers to dream big with a big team- wanting to discuss desired outcomes with many friends, family members, and supporters. Other conversations, especially related to health, happen with a smaller group.

Danica prefers to have meetings with their partner and Personal Agent separate from their parents as they discuss their relationship, sex, and family planning.

Preferences

Learn what kind of things or items they want to have around them and don’t want around them such as: pets, toys for children/siblings, food/drinks, fidgets, note taking materials etc. Another example is if a person has an allergy, like I do to Latex, I make sure nobody brings anything around me made with rubber or Latex. Does the person have supports, while planning, to help with sensory, hearing or vision needs, and communication supports? Can we create agreements before the meeting, such as topics are off the table or how decisions will be made? If approaching a sensitive topic, ask the person for permission to discuss the topic with them and let them know they can take a break from the conversation or end it at any time. Consider supports that can help the person feel more comfortable and create a safe space for the conversation to happen.

Abebe has his ISP meeting at a park so he and all his cousins can play when he wants to take a break from the meeting. Abebe’s parents bring a lot of food, and they start the meeting by sharing updates about Abebe’s past year and highlighting the fun things he did and learned.

Erika likes it when her Services Coordinator draws and writes down information as it is shared. She always asks to hang up the posters on her bedroom wall.

Erika uses a communication device, which supporters help to make sure is charged and available for every meeting.

Accommodations

Always consider what accommodations the person or people they invite to plan may need. Accommodations can really be anything that helps a person feel calm, comfortable, and engaged during planning. For example, when planning with people of diverse backgrounds, there may be a need for an interpreter or translation services so the person and others can meaningfully engage. Does the person want someone to take notes or write ideas down as they are saying it? Do they need large print materials, music playing in the background, having their pet with them, shorter meetings vs. one long meeting, Braille, frequent breaks, etc.?

Joon’s parents realized that using Zoom meetings has helped with her social anxiety. Her Services Coordinator has found that he has been able to learn more about Joon and noticed she’s been more active and engaged in conversations, which has opened up more opportunities to get to know her.

Leyla is someone who needs to process information internally, and have time to collect her thoughts. Her Personal Agent sends out the meeting agenda at least two weeks ahead of time, and talks to Leyla over the phone a week before the meeting. During these phone calls, Leyla is able to request changes to the agenda and talk through her initial planning ideas.

About the Author
Jen DiBello has been with the OTAC program for 25 years. During this time, she has worked as a trainer and administrative assistant with the Oregon ISP team, as well as the Safety Committee leader. Jen recently became a Charting the LifeCourse™ Ambassador and is a credentialed People Planning Together trainer.

February 28, 2022February 23, 2023

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 population^{1, 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.

A few tools that have helped me navigate my chronic pain experience is the LifeCourse™ Trajectory and Integrated Support Star tools. I started with using the trajectory tool to consider what I want and didn’t want in my life. It helped me see the things that I can do to help move towards the life I want and to avoid a life of isolation, depression, and worsening symptoms. I then used the Integrated Support Star to help me explore different supports and resources available to help me on my path.

Wellness Planning:
If you are in a support role for someone who experiences chronic pain it is important to understand it impacts all aspects of a person’s life. It can be overwhelming for the person, especially when it comes to navigating supports. No matter how far along a person is in their pain experience and ability to manage pain, each person can benefit from proactive conversations about options for pain management. One important message to remember is that people who experience chronic pain are working to “quiet the pain” enough to be able to do the things we enjoy. The focus is less about how to completely stop the pain. Really listening to person and their actions can help you in your support role. If the person’s pain is at a consistently high-level, where they are unable to enjoy life, then we must start with addressing the need to reduce the pain immediately. It is about supporting a person’s dignity to live comfortably and strong advocacy may be needed.

Consider how a person’s chronic pain might be addressed in their ISP and day to day support:

Chronic Pain Protocol- Outlines general supports that help the person manage chronic pain. This can help supporters to provide consistent, quality care around chronic pain that works for the person. It incorporates what is ‘important to’ the person and lessons learned about what does and does not work for them.
“Pain Day Routine” Support Document- A customized tool developed with the person to outline what supports are needed and how they may look different when they are experiencing an increase in pain.
Person Centered Information Form- Outlines communication strategies that work best when the person is experiencing pain
Communication Chart– If pain impacts a person’s communication, a communication chart can be a powerful way to help supporters understand how the person communicates when they are experiencing elevated pain levels, and what they can do to help support during these times.

Advocacy:
We need people in our corner! Creating a One-Page Profile to share with medical professionals can help a person in their medical advocacy efforts. One-Page Profiles can also be a powerful tool to help others understand the person’s communication about pain.

In my role as a behavior professional in Oregon for the past 12 years, I have learned from too many people that when pain goes unmanaged, it can also lead to more significant risks in a person’s life. When a person goes with unresolved pain, the outcome can be even more hurtful or harmful for their health and well-being. If a person’s behavior changes, it is important that we always rule-out potential underlying medical factors that could be a concern, especially if a person is unable to verbally communicate what they are experiencing.

Advocacy can look like supporting a person’s ability to communicate about their pain and the supports they many want or need. This could include using a visual pain scale or pictures of wellness activities.

*Disclaimer: Please consult with licensed medical professionals to discuss recommendations and supports when planning with a person who experiences chronic pain.

About the author
Jennie Heidrick started with the OTAC program in 2009 and has been providing training, consultation, and mentorship services for Oregon’s IDD service system. Jennie is passionate about supporting people with IDD and their families, in addition to collaborating with the teams of people throughout Oregon who are committed to the same goal of protecting people’s rights and ensuring people have access, information and tools to live their best lives. Jennie experiences a chronic pain condition, disability and is a strong advocate for others who experience chronic pain and disability as well.

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

January 31, 2022February 23, 2023

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.