Category: ISP Process

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January 2024 ISP Redesign Update

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Supports that Lead Toward a Person’s Good Life

Let’s start by going on a visual journey. Picture a star and visualize the five points of the star. The five points of the star each represent a different type of support: personal strengths & assets, technology, community based, relationships, and eligibility specific. Now imagine for a moment that you have a dream of traveling, but you aren’t sure how to reach it. We can use the star and its five points to consider all the different ways you can get support to achieve your dream of traveling.

The Star, pictured above, comes to us from the Charting the LifeCourse framework. It provides a way to think about and plan for many different types of support that are possible. The image contains a description of each point of the star, which are also described in the article below. 

The star that I am referring to is The Star Tool from the Charting the LifeCourse framework. This tool can be helpful during the ISP planning process and can be used in many ways. It can be a great visual to see all the avenues that someone can access for support. For more information, examples, and videos of the ways The Star is used, visit the Charting the Lifecourse website.

Below we will explore how the different points of The Star can help support a dream or goal that you might have. We will continue to use the example of traveling.

This point of the star is all about the skills, strengths, and assets that you bring to the table. What knowledge or life experiences do you already have that could support making your goal become a reality? What are you good at and what do others like and admire about you? Do you already have resources that can support you with your goal? We all have skills and strengths that we bring to the table that can help us achieve our goals.

For the goal of traveling, personal strengths and assets could include:  

  • Being knowledgeable about the place you want to visit  
  • Having a good sense of direction 
  • Having luggage that you can use 
  • Being able to use GPS to get around  
  • Knowing how to use transportation services  
  • Experiencing traveling with children, if you’re bringing kids along

Next, we want to consider those important connections we have in our life from which we can draw support to achieve our goal. This could be friends, family, acquaintances, or any person that you feel close with. Anyone that you have a connection with could support you with your goal.

For the goal of traveling, relationships could include:  

  • An aunt or an uncle that does a lot of traveling 
  • A parent that could help you do research  
  • A sibling who can provide childcare while you travel  
  • A friend who works at a travel agency

This section can include any technology that supports your goal. This could be personal technology that can be used by anyone, assistive or adaptive technology, or environmental technology that helps adapt surroundings. This could include a smartphone, tablet, laptop, video game system, smart watch, adaptive equipment for cooking, a wheelchair, scooter, electric toothbrush, glasses, and the list could go on. Tech can also be low-fi options such as an adaptive spoon, light switch, or lowered countertops. Technology can be useful in countless ways.

For the goal of traveling, technology could include:

  • Using a computer to research about the place you want to visit and where you want to stay  
  • Looking up flight and transportation information using your smartphone  
  • Using physical maps to help you get around while traveling  
  • Noise canceling headphones and fidgets for adults and kids to reduce stress in new situations

In this section we want to consider places, groups, or resources that anyone can access to in the community. In general, this could include businesses, parks, membership organizations, public resources, schools, libraries, faith-based communities, or health care facilities.

For the goal of traveling, community-based supports could include:

  • Travel agencies and travel groups or clubs (Joining a travel group could also then lead to more connections and grow the support you have from relationships)
  • Using your local library to check out travel books for adults and for kids about the place you want to visit  
  • Facebook group of local travel enthusiasts  

The final point on the star is the eligibility specific supports. These are the paid supports that can work with other points on the star to support someone with their dreams and goals. This could include government paid services based on disability or diagnoses, special education, Medicaid, Social Security, and many others. Eligibility specific supports include anything you are eligible for that not everyone in the community can access. Often times paid IDD services are the first thing we think of, but it can be valuable to look at other areas of support (the other points of the Star) so we get a full picture of the supports available to help lead to a good life.

For the goal of traveling, eligibility specific supports could include:  

  • A paid provider who could help with research and planning  
  • Attending a class trip chaperoned by school staff (for school age youth) 
  • Travel groups that are specific for someone with a disability, such as TRIPS INC 
  • Having a driver’s license to drive yourself to the airport  

Conclusion

We have made our way around The Star and have identified so many different options available to us to help support our dream of traveling! The Star is just one of many tools available from LifeCourse. There are many uses for The Star from supporting a specific goal to getting a general sense of available supports in someone’s life. The star can also be used with additional LifeCourse Tools to support the ISP planning process. Check out some additional videos and links below that show people using the tools.

Additional Resources

Kevin talks integrated support star
Paula using trajectory
LifeCourse website

About the Author

Lindsay joined the Arc Oregon team as an OTAC Trainer in August of 2022. She brings with her 7 years of experience working within the field of disabilities. Most of that time was spent working at a Foster Home providing direct care, and then as a Personal Agent at a Brokerage providing person centered case management. Lindsay is a Charting the LifeCourse Ambassador.

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Supporting People Experiencing Chronic Pain

Chronic pain can impact all aspects of a person’s day to day life, including their mental and physical wellness. It often requires the person to explore a multitude of supports and strategies to help them manage their pain and keep doing the things they love.
 
Chronic pain is defined as pain that lasts longer than three months and can occur in any part of a person’s body, including full-body pain experiences. Pain can fluctuate in severity, as well as come and go for periods of time.
 

According to the American Journal of Nursing, “people with intellectual or developmental disabilities suffer from the same chronic diseases and conditions as the general population but are more likely to have physical and psychological comorbidities. This places them at higher risk for experiencing pain and for having more frequent or severe pain.”1  

This is an issue of equity. Though people with intellectual and developmental disabilities experience higher rates of chronic pain, pain is often underrecognized and undertreated for this population1, 3. This is especially true of those with diverse communication, whose communication about pain may be misinterpreted or perhaps even labeled as “challenging behavior”. Black, Indigenous, and People of Color (BIPOC) are additionally impacted by systemic racism, including disparities in accessing healthcare, getting accurate assessments, and receiving appropriate treatment for chronic pain.4 BIPOC communities, most specifically Black people, have and continue to face medical care bias that compounds disparities.

When planning with someone who experiences a chronic pain condition, it will be important to first listen and learn what they have already tried and what works for them now. The ‘4 plus 1 questions’ tool is one way to facilitate and record this conversation.

If a person is new to experiencing chronic pain, they may not yet feel like the expert or their own best advocate. Throughout each person’s unique journey with chronic pain, the right tools, supports and people can help the person to be the expert and best advocate.

As a person who experiences a chronic pain condition, I can share that pain impacts my ability to communicate and process information, especially when I am experiencing a pain flare with severe muscle spasms. When this happens people often want to ask, “what can I do to help,” but at that point I am unable to ask for the things I want and need, and it leaves us both feeling more frustrated. I have learned to share with those close to me what helps me when I’m experiencing increased pain so it’s a win-win for all. A person’s support needs for managing chronic pain may differ at times, depending on a multitude of factors. For instance, temperature changes, activity levels, medications, and other external stressors can all impact a person’s pain experience.

When planning with someone who experiences chronic pain, it will be important to consider a variety of factors and supports, such as:

Adapting activities and environments for accessibility and comfort:
If a person is planning a long trip, consider additional break times and finding destinations that are accessible, especially for those who uses mobility supports. Occupational and Physical Therapists can help a person explore options for adapting activities to support comfort and independence within a person’s daily routines and activities. Consider engaging in wellness related activities virtually during this time, as many community-based events and activities are now offered online!


Mental Health and Wellness:
People managing chronic pain can benefit from a “toolbox” of different health and wellness related tips and tools to help manage pain. The person may already have great tools that work for them, and medical professionals may also have ideas on new tools to try. These could include ice/hot packs, therapeutic pillows, Transcutaneous Electrical Nerve Stimulation (often referred to as a TENS machine), body wraps/therapeutic taping, aromatherapy, tools for self-massage and other general comfort items.


Pain Management Clinics:
These programs often offer support with medication management, resources for best-practices in managing chronic pain, and self-help techniques for distracting one’s brain from the pain. The techniques can interrupt pain signals through methods ranging from tactile/sensory supports to bio-feedback coaching sessions.

Community Health Centers and other Holistic Practices:
Several types of non-pharmaceutical pain management supports can be considered in consultation with a person’s medical team. These supports can include massage therapy, acupuncture, restorative or therapeutic yoga, relaxation/breathing techniques, life-coaching, and dietary or other nutritional supports.

Chronic Pain Support Group:
These can provide an outlet for the person to share and connect with others. This also helps to combat feelings of isolation and loneliness. Many chronic pain support groups have shifted to virtual during the COVID-19 Pandemic.

Mental Health Services:
Managing a chronic pain condition can have a significant impact on a person’s overall mental health and wellness. The person may be experiencing grief and loss, as they may no longer be able to do the things they once enjoyed or had hoped for their future. Often the activities we choose to do give us a sense of identity and for some people experiencing chronic pain they may also be processing “who they are now.” People with chronic pain are three times more likely to develop symptoms of depression or anxiety, and people with depression are three times as likely to develop chronic pain.2 Depression can cause unexplained pain, such as headaches or back pain, and people who are depressed might have difficulty doing physical activities and other wellness practices. In turn, chronic pain can lead to trouble sleeping, increased stress, or feelings of guilt or helplessness associated with depression. This can be a hard cycle to break and being intentional about helping to break this cycle is important.

View my LifeCourse Trajectory
View my Integrated Support Star for Managing My Chronic Pain Condition

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

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

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

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

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

In my role as a behavior professional in Oregon for the past 12 years, I have learned from too many people that when pain goes unmanaged, it can also lead to more significant risks in a person’s life. When a person goes with unresolved pain, the outcome can be even more hurtful or harmful for their health and well-being. If a person’s behavior changes, it is important that we always rule-out potential underlying medical factors that could be a concern, especially if a person is unable to verbally communicate what they are experiencing.
Advocacy can look like supporting a person’s ability to communicate about their pain and the supports they many want or need. This could include using a visual pain scale or pictures of wellness activities.
 
*Disclaimer: Please consult with licensed medical professionals to discuss recommendations and supports when planning with a person who experiences chronic pain.
A woman wearing a grey turtleneck sweater. She has long brown hair in a braid.
About the author
Jennie Heidrick started with the OTAC program in 2009 and has been providing training, consultation, and mentorship services for Oregon’s IDD service system. Jennie is passionate about supporting people with IDD and their families, in addition to collaborating with the teams of people throughout Oregon who are committed to the same goal of protecting people’s rights and ensuring people have access, information and tools to live their best lives. Jennie experiences a chronic pain condition, disability and is a strong advocate for others who experience chronic pain and disability as well.
 

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

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

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

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

 

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ISP Section Feature: Differences

Differences- A Small but Mighty ISP Section

The Differences Section in the ISP is a place to include any differences or disagreements with what is in the plan and what the person or any other team member wants.
While this might seem straightforward, this section plays a really important role in planning.
What the Person Wants
 
Sometimes, it may not be possible for the plan to reflect exactly what the person is asking for or wants. By recording this in the differences section, we can:
  • Honor the person’s perspective
  • Acknowledge when the plan doesn’t reflect what the person wants
  • Call attention to this difference, so that we can work toward aligning the plan with what the person wants in the future.
  • We know planning is going well when we’re working toward the person’s vision for a good life.
  • We want to avoid simply documenting the same difference year after year without effort toward aligning the plan with what the person wants.
In the example above, TJ is living with his parents but wants to be living with his girlfriend, Ashley.
 
Even though there are several logistical reasons that TJ cannot move into an apartment with his girlfriend right now, TJ’s ISP team is not losing sight of where TJ wants to be living. By documenting this difference, TJ’s perspective is in plain view. His team will continue to revisit this conversation, address barriers, and support TJ to live his ‘good life’.
What Any Other ISP Contributor Wants
 
The person is the driver of the plan. The ISP should reflect what the person wants, and at times, this may mean that the plan does not include what other ISP contributors want. By including differences between the plan and what any other ISP contributor wants, we can:
  • Support other ISP contributors to feel heard and having their perspective recorded
  • Have clear communication about the contents of the plan, especially when there are many different perspectives
  • Support the person to direct the contents of their plan

In the example above, Maya likes to take the bus to work. Her sister, Alexa, believes that Maya should not be taking the bus by herself.

By recording Alexa’s perspective, those planning with Maya can help Alexa to feel heard and that her concerns are taken seriously. However, by recording this concern as a difference rather than letting it shape the plan itself, Maya’s ISP reflect what she really wants (taking the bus to work).

By recording Alexa’s perspective, the team may also consider what might help Alexa be more comfortable with Maya riding the bus and help these planning conversations happen with sensitivity and respect to Alexa’s concerns.

No differences? Don’t forget to check ‘No known differences’!
 
There may not always be difference between the contents of the plan and what the person or other ISP contributors want. This is great, but don’t forget to check that there are no known differences. This helps to close the loop and shows that there are no differences- not that we overlooked or forgot about this section.

Do you have questions about using the Difference section? Have you had success or challenges while using this section? We would like to hear from you! Please reach out to our team.

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

A cartoon graphic of a family hugging each other

Part 3 of 3: Supporting the Foster Provider

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

Be Resourceful

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

Training and Continuing Education

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

Build Positive Relationships

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

Conclusion:

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

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

A cartoon graphic of a family hugging each other

Part 2 of 3

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

Building Trust:

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

Working as a Team

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

Ongoing Support

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

Conclusion:

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

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A Brief Introduction to Protocols

As we move toward the goal of making sure providers have the information they need to support a person well, it is important to have quick and simple tools for communicating information about necessary supports in a way that is easy for providers to understand and follow.

When a serious risk has been identified, there are several ways it can be addressed. Protocols are one available tool that can provide a helpful structure to address a medical risk.

A protocol is a document that contains personalized instructions that tell support providers how to care for a specific risk or other medical issues.

Protocols are typically written by someone who works directly with the person and who knows the person well. This is done by taking into account what is ‘important to’ and ‘important for’ a person.

Teams may want to seek the advice of a physician or other qualified professional when developing risk management strategies. In this way, the professional’s guidance can inform how the protocol is written.

Most doctors will not want to fill out the entire protocol but will be willing to answer specific questions. Physicians and other qualified professionals can help teams determine if a risk is or is not present and may suggest specific ways to address a risk. This information can then be incorporated into the protocol in a way that providers can understand and follow.

There are a couple things to keep in mind before asking a physician or other licensed medical professional to write a protocol:

  • When a licensed medical professional writes a protocol, it should be treated as an order from that professional. Any changes to the protocol should be made or approved by the person writing the order. This can be time consuming for a provider and a burden on the person and medical professionals.
  • Physicians use medical jargon that others might not understand. Providers must be able to understand and follow the protocol. The protocol should be written in language that is commonly used

Nurses need the opportunity to review and approve any support document (protocol, procedure, etc.) that addresses an issue identified in a person’s Nursing Care Plan. Nurses may be but are not required to be the original author of support documents; they may review a document created by someone else, modify it as needed, and then sign the document to indicate that it is consistent with the person’s Nursing Care Plan.

When a person lives in a 24-Hour Residential setting, protocols must be used as directed by the ISP process. In other settings, like Foster Care and In-Home, the person writing the protocol can choose to use and develop protocols in a way that is most helpful.

When a person lives in a 24-Hour Residential service setting, providers supporting that person (i.e. Residential, Employment, and Day Support providers) are required to use standardized protocol formats to address the risks of Aspiration, Choking, Constipation, Dehydration, and Seizures. The Financial Plan must also follow a standardized format. A general protocol, as well one for pica, is also available. All of these standardized protocol formats are available for download in Microsoft Word Document format at http://oregonisp.org/forms/.

When a person lives in a setting other than 24-Hour Residential, providers may use any format that works well for them. They can choose to use the available standardized protocols or create their own format.

If creating your own protocol, keep in mind that there are some basic components that a good protocol includes:

  • What is the issue? Describe how you know the person is at risk for the issue.
  • What does it look like? List the signs and symptoms to look for. What are the warning signs for the risk?
  • How do we prevent it? Describe the preventative measures to be taken. What will be done to minimize the chance of the problem occurring?
  • What do we do if we see it? Describe the specific steps to take if any warning signs are observed. This typically includes instructions on who to call and where to document that the problem occurred.
  • When do we need to call 911? List the circumstances for when 911 should be called immediately. Remember, you don’t need permission to call 911.

Generally speaking and in all settings, if a provider is being paid to support a person, the expected supports must be written down. A few places these supports can be recorded are: in the ISP, in a Service Agreement, or in a Support Document (e.g. Protocol).

There are times when it is helpful to use a protocol. The Services Coordinator or Personal Agent may direct the use of protocols based on their professional judgement. Because of this, it is important for all Services Coordinators and Personal Agents to understand the fundamental purpose of a protocol and have a basic knowledge for when using one is helpful, regardless of the setting in which they provide case management.

  • When there are multiple providers supporting a person, protocols help to ensure the person is being supported consistently. They make sure that all people who provide support have the same information to do a job well.
  • When there are very specific or complex steps that must be taken, protocols can provide clear instruction that might otherwise be forgotten or missed, especially during a stressful moment.
  • When it is important for the provider to know how to prevent a risk, what the warning signs are, what to do if they see a problem, and when to call 911, protocols offer all this information in one, easy-to-access document.

To learn more about support documents, including protocols, refer to the ISP Instruction manual chapter on Risk Management Strategies at http://oregonisp.org/instructions/.

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