Stay Stubborn! One Girl’s Self-Determination while Navigating Healthcare

By Kyann Flint

Being stubborn is the right approach when it means self-determination. Having the drive to learn what you want and need and then speak up for yourself gives you control over your life. 

I learned that lesson young. By age 6, I was advocating in my own healthcare. My doctor wanted to stick a swab up my nose and down my throat at the same time. I told him, “No!” and asked, “What would that accomplish?” I was not sick. Why put me through that? I had been through enough tests. If this one was not going to improve my pain or give me a diagnosis, then it did not need to happen. Because I spoke up, it didn’t!

My parents supported my growing self-advocacy and also advocated for me. As my voice blossomed, so did my skills for self-determination. The self-determination skills I worked on throughout childhood have helped me gain independence and make some of the most important adult decisions of my life.

When I was 8, I was diagnosed with a type of genetic peripheral neuropathy called Charcot Marie Tooth (CMT). The coating around my nerves becomes scarred and cannot be repaired, making it hard for my brain to tell my legs, arms, feet, and hands what to do.

I continued to have symptoms that did not quite fit this diagnosis, so testing continued. By age 12, I started asking whether further diagnoses would improve my quality of life. The answer was no, so I chose to end the poking and prodding and deal with my symptoms as they came.

Right after I turned 21, I was in tremendous pain and needed more help. Three years later, I had a second diagnosis: Heredity Spastic Paraplegia. Four years after that, the cause of my pain was finally found. My bladder was failing, which made it difficult to go to the bathroom. I eventually lost the ability to go to the bathroom on my own. On September 30, 2020, I made one of the best decisions of my life and had the Mitrofanoff surgery that now allows me to go to the bathroom independently.

I needed a lot of self-determination to get to this point. Before the surgery, one doctor advised against it, explaining that I wasn’t a good candidate due to my progressive neuromuscular disorders. She predicted that I would be incapacitated one day, so “why bother?” I decided that even if she were right, I wanted the independence that the surgery could provide now. I found a new surgeon. I am so thankful that I did!

My surgeon related well with me and supported my belief that I was “worthy” of this procedure. He agreed that it was a good choice to enable me to live more independently right now. The choice to proceed wasn’t easy or pain-free. I needed many tests and procedures, including a colonoscopy without anesthesia. Delays in scheduling the surgery tested my self-determination, but I persevered.

My surgery included a week in the hospital and months of recovery, but my stubborn nature helped me get through it all, despite the frustration of having limited manual dexterity and being legally blind. But I figured out how to go to the bathroom independently!

It took a lot of self-determination to move forward with one of the best decisions of my life, but I am proud that I made this decision. If you have a decision to make in your life, I hope you will tap into your own stubborn self-determination. Figure out what you need and want and speak up for yourself. I’m so glad I did.

About the author: Kyann Flint, Director of Accessibility for Wandke Consulting, is a passionate advocate for the disability community. As a person with a disability, she strives to educate society on how social barriers, like ignorance and stereotypes, limit the disability community. Kyann loves coffee and traveling.

COVID-19 and Disability: Access to Work has Changed

By Kyann Flint

The world of work is generally not built for the disability community. Federal laws guarantee the right to work and the right to accommodations, but modern-day jobs do not always give each person an opportunity to succeed. Many workers with disabilities must try harder to make the job fit, and some employers see accommodations as extra expenses or special rather than an investment for equal opportunity.

I have experienced this firsthand. My first employer told me that because of my legal blindness, he did not know what he would have me do. No empathy. No innovation. No Universal Design.

Universal Design is a plan for buildings, products, or environments that are accessible to all people, regardless of age, disability, or other factors. Universal Design accommodates everyone, reducing the need for anyone to need or request accommodations. My own opportunity to build a career was boosted by having a boss who is also disabled at an agency that incorporates Universal Design into our everyday work.

COVID-19 has reshaped many jobs and created opportunities for employers to see how Universal Design can benefit everyone. For example, the disability community has long advocated for work-from-home. Until organizations were driven by the need to keep everyone safe, the request for this accommodation did not seem like a good choice for many employers. Many now see the benefit of a work-from-home option.  

Because I cannot drive, working from home benefited me before the home office became common during COVID-19. My colleagues and I were already comfortable with Zoom and knew how to help our community adapt to using that online meeting platform and other tools to support the need for almost everyone to work from home.

Clearly, working from home is not just a disability accommodation but also provides access to jobs for more people. This change represents a benefit of Universal Design.

Curb cuts are another example of Universal Design. Curb cuts are built with wheelchair accessibility in mind, but they benefit everyone, making it easier for parents with strollers, people with leg injuries and anyone who might trip or fall because of a misstep over a curb. Ramps, elevators, and accessible websites are other examples of innovations that support everyone.

Better access for everyone means fewer people need to ask for accommodations. People with disabilities feel included. In a world built with Universal Design, disability is not a problem. When society gives people with disabilities access to work, we are all better off.

A lesson learned during COVID-19 is that accessibility is an investment, not an expense. Universal Design an everyday thing that creates equity and inclusion for all.

About the author: Kyann Flint, Director of Accessibility for Wandke Consulting, is a passionate advocate for the disability community. As a person with a disability, she strives to educate society on how social barriers, like ignorance and stereotypes, limit the disability community. Kyann loves coffee and travel.

Ideas to Support Children and Families Impacted by Abuse, Trauma and Divorce

Brief Overview

  • The National Education Association (NEA) recognizes that childhood experiences related to domestic abuse, trauma or divorce affect education. This article includes recommendations for teachers, family members or other adults who might advocate for a student who needs more help due to challenging life circumstances.
  • Researchers agree that a trauma-sensitive approach to special education can be critical and urge schools to approach discipline with caution in order to avoid re-traumatizing students.
  • After a divorce, both parents participate in educational decisions unless the divorce decree or another court action specifically removes a parent’s rights. This article includes tips for navigating those circumstances. A parenting plan that designates a primary parent for school interactions is one idea.
  • Schools can accommodate survivors of domestic abuse to help them participate safely in the special education process for their children. Alternative meeting spaces are among ideas further described below.

Full Article:

Students who experience trauma often have a rough time staying emotionally stable and keeping their behavior on track for learning at school. Research about Adverse Childhood Experiences (ACEs) lists many childhood conditions that impact a person’s lifelong health and access to opportunities. High on the list are trauma from domestic abuse and divorce. For many families, complex trauma includes both.

A child’s response to trauma may look like disobedience or lack of motivation. A family member or teacher might notice that a child is regressing. A student may have delays in social communication or emotional regulation–skills schools teach in an emerging area of education called Social Emotional Learning. Some children survive severe distress but don’t demonstrate obvious changes in behavior or disrupt the classroom. In all cases, figuring out what’s happened and how to help requires a thoughtful, individualized process.

A family member, school employee or any concerned adult can respond by seeking an evaluation to determine whether the student has a disability and qualifies for services delivered through an Individualized Education Program (IEP) or a Section 504 plan.

Note: Section 504 is part of the Rehabilitation Act of 1973, which protects individuals with a disabling condition that impact a “major life activity.” An article on PAVE’s website further describes Section 504 and the differences between a 504 Plan and an IEP. PAVE also provides comprehensive articles and on-demand webinars about special education process, the IDEA, evaluation, and other topics listed under Learning in School at wapave.org.

A behavioral or emotional disability that significantly impacts access to learning can qualify a student for an IEP under the Individuals with Disabilities Education Act (IDEA) if the student demonstrates a need for Specially Designed Instruction (SDI). Among the IDEA’s 14 qualifying categories of disability are Emotional Disturbance, which captures a variety of behavioral health conditions, and Other Health Impairment, which sometimes captures conditions related to attention deficit, anxiety or depression. A child who isn’t found to have a qualifying disability might benefit from a behavior support plan or counseling services at school. 

Supporting and educating students with trauma histories has become a priority for the National Education Association (NEA), with a specific focus on students who have experienced or witnessed domestic violence, sexual abuse and related traumas.

The problems are widespread: More than half of women who experience domestic violence have children younger than 12, and data indicate that nearly half of those children witnessed the abuse.

Response to a child’s symptoms may be complicated by cultural considerations: Some cultures may be more accepting of abuse, less trusting of authorities or afraid of the fallout within the community. An agency in Washington that helps when multicultural issues create barriers is Open Doors for Multicultural Families.

Best Practice Strategies to Help

On its website, the NEA offers an article: Best practices for supporting and educating students who have experienced domestic violence or sexual victimization. The article provides strategies to support traumatized students. Here is a summary of some points:

  • Provide structure, a sense of security and a safety plan: “Children who experience abuse often yearn for structure and predictability.”
  • Help students understand available support and the teacher’s role as a mandated reporter: “The larger the number of people available to listen to a student, the more likely that student is to disclose abuse.”
  • Validate and reassure the student: “Provide non-judgmental, validating statements if a student discloses information. Sample statements include That must have been scary or It must be difficult to see that happening.”
  • Identify triggers of anxiety or challenging behavior: “…be prepared for negative emotions and behaviors from the student in response to triggers.”
  • Use a daily Check In to provide a solid foundation for relationship building: “It can be helpful to use pictures or a rating scale to help students identify and label their emotional states.”
  • Directly teach problem solving skills: “Be honest with students about how you’re feeling and talk through your actions in response to challenging situations.”

Domestic Abuse is Common

Understanding the nature and prevalence of domestic abuse can grow compassion, combat stigma and promote shared problem-solving. The National Coalition Against Domestic Violence (NCADV), defines domestic violence as “willful intimidation, physical assault, battery, sexual assault, and/or other abusive behavior as part of a systematic pattern of power and control perpetrated by one intimate partner against another.”

Acts of domestic violence can be physical, sexual, threatening, emotional or psychological.  Statistically, 1 in 4 women and 1 in 9 men experience some form of domestic violence; its prevalence is noted among all people regardless of age, socio-economic status, sexual orientation, gender, race, religion, or nationality.

How to Notice Something is Wrong

When domestic abuse impacts a child’s access to education, figuring out how to help requires thoughtful consideration. The NEA describes specific characteristics of children who have experienced trauma and how their ability to function is compromised. Here is a summary from NEA’s article:

Regulation

  • Children may find it hard to explain their emotional reactions to situations and events.
  • They may appear inattentive or hyperactive—or fluctuate between both.
  • Loud or busy activities can trigger a confusing reaction: a child might lose control about something that is usually a favorite.

Social Skills

  • Children may have “disordered social skills,” playing inappropriately or lacking typical boundaries.
  • They may withdraw socially or try to control situations in ways that seem rude or look like bullying.
  • They might develop “friendships” based on negativity and be unable to develop high-quality, appropriate friends.

Cognitive Function

  • Children impacted by trauma may be mentally overwhelmed and struggle to follow directions or shift from one activity to another, even with prompting. (Adults may mislabel these cognitive inabilities as deliberate or defiant behaviors.)
  • Children may overly depend on others but struggle to ask for help.
  • An impaired working memory can make it difficult for the child to start or finish a task, pay attention and/or concentrate.

Evaluate with Trauma in Mind

The Federation for Children with Special Needs provides a downloadable article called Trauma Sensitivity During the IEP Process. The article provides suggestions for making the evaluation process trauma sensitive and includes this statement:

“By becoming aware that violence may be at the heart of many of the child’s learning and behavioral difficulties, school personnel may be able to mitigate much of the lasting impact of trauma.”

The federation urges schools to approach discipline with caution in order to avoid re-traumatizing students and encourages use of the Functional Behavioral Assessment tool and a framework of Positive Behavioral Interventions and Supports (PBIS):

“Self-regulation describes the ability of a child to ‘put the brakes on’ in times of emotional stress. Traumatized children are hyper-aroused; they view their world as dangerous and unpredictable and they are prepared to react in a moment’s notice, usually in inappropriate (and possibly unsafe) ways…IEP Team Meeting members can go a long way towards ameliorating this hyper-arousal by asking for Functional Behavioral Assessments to ascertain the reason for the inappropriate reactions as well as ways to replace the behaviors with better coping skills and strategies.”

A trauma-informed approach at school meetings can help the team figure out why unexpected behaviors happen or why academic progress seems so hard to achieve. Promoting healthy relationships by designing intentional time with trusted adults and developing a creative strategy for Social Emotional Learning (SEL) at school are strategies the team can discuss. A trauma-informed approach, the federation contends, “encourages educators to ask, What happened to you? instead of What’s wrong with you?

When Divorce Complicates Work with the School

Another domestic issue that sometimes complicates circumstances for families navigating special education is divorce. The US Department of Education stresses that parents or legal guardians are decision-makers for their children. Whether parents are married or separated, they both are equal decision-makers in special education process unless the divorce decree or another court action specifically removes that right.

A parenting plan can be written with specific instructions about which parent is the educational decision maker.

The school needs a copy of the parenting plan in order to follow it. Without a plan in place, either parent who shares joint legal custody can sign an educational document that requires parental consent, even if the student lives full time with only one parent. Parental rights include access to records and educational information about the student. A non-custodial parent has the right to be informed of meetings and attend meetings.

Parents with joint custody who share parenting decisions may want to draft an agreement with the school to specify how the child’s time is divided and which parent is responsible for specific days, activities or meetings.

Schools Can Offer Safe Space

If one partner has been abused and there is no restraining order to prevent the non-custodial parent from attending school meetings, schools can accommodate the domestic abuse survivor by offering a separate meeting in a different space, at a separate time.

If a parent is bound by a restraining order, the IEP team will need to determine whether the order limits access to the school building and whether the order specifies that the parent has lost rights under the IDEA. If the order limits building access, but does not limit IDEA rights, then that parent has the right to attend a meeting in another space or by phone. A restraining order might include “no contact” with the child, and the meeting must ensure that the child’s safe distance from the parent is protected.  

Visit the following websites for additional information:

Access Rights of Parents of Students Eligible for Special Education (Washington State)

Best practices for supporting and educating students who have experienced domestic violence or sexual victimization.

In the Best Interests of the Child: Individualized Education Program (IEP) Meetings When Parents Are In Conflict (PDF)

Divorce: It Can Complicate Children’s Special Education Issues

Adverse Childhood Experiences (ACEs)

Trauma Sensitivity During the IEP Process (PDF)

Trauma Informed Schools Resources (OSPI)

Response to Intervention (RTI) – Support for Struggling Students

Brief overview

  • Students struggle in school for different reasons.
  • RTI is an acceptable way of identifying students with learning disabilities.
  • RTI isn’t a specific program or type of teaching.
  • RTI works on a tier system with three levels of intervention.

Full Article

Students struggle in school for different reasons. Response to Intervention (RTI)  can help by combining high quality, culturally responsive instructions with assessments and interventions that are proven to work by evidence from research.

RTI was originally recognized in the 1970s as a system for helping students with potential learning problems early, instead of waiting until they fail. With the reauthorization of the Individuals with Disabilities Education Act (IDEA) in 2004, RTI was noted as an acceptable way to identify students with learning disabilities. RTI can help students who haven’t yet been identified as eligible for special education or those who struggle but don’t qualify for special education services.

At any time during the RTI process, parents or teachers can request an evaluation for special education services.  The evaluation can determine whether a student qualifies for an Individualized Education Program (IEP) or accommodations through a Section 504 Plan. RTI does not replace a school’s responsibility to evaluate students who might qualify for special education services. See PAVE’s article on Child Find, a mandate of the Individuals with Disabilities Education Act (IDEA).

RTI’s goal is for schools to intervene before a student falls too far behind. RTI is not a specific program or type of teaching, but rather a proactive way to check in with a student to see how things are going. Data help school staff decide which types of targeted teaching would work best for the student. If a student’s progress is slow or stagnant, then teachers adjust based on the student’s needs. 

RTI has three levels, or tiers, for intervention:

  • In the general education classroom
  • In a special education classroom, resource room, or small group
  • For an individual student

RTI works best when parents are involved

Parents can monitor their child’s progress and participate in the process. Parents can talk to the school about which instructions or reinforcements are working and boost the benefit by being consistent with the same strategies at home.

As military families move from one location to another, they may notice that each school uses different techniques to implement RTI programs.  Schools will format their programs to best fit the needs of their students by using a variety of tools to improve learning for all students. Keeping up with what’s happening at school might be challenging but can help the student find success.

RTI is part of a Multi-Tiered System of Supports (MTSS) framework.  MTSS provides a method for intervention in academic and non-academic areas, including Social Emotional Learning or behavior support. MTSS is used to support adult students and professionals as well. In this video, a researcher from the American Institutes for Research, Rebecca Zumeta Edmonds, Ph.D., discusses differences between MTSS and RTI.

PAVE has an article that describes MTSS and how it can provide a larger framework for Positive Behavior Interventions and Supports (PBIS), when a child’s behavior becomes a barrier to learning.

For more information on RTI, MTSS, and PBIS:

The Three RTI Tiers

Center on Response to Intervention

Response to Intervention (RTI)

 What is the Difference Between RTI and MTSS?

MTSS: What You Need to Know

Positive Behavioral Interventions & Supports (PBIS) in Schools

I want the kind with the people and the pictures

By John O’Brien

After a Difficult Start…

Institutionalized from age three to twenty-three in a place where “they treated us like animals”– Mike has composed a good life, taking many valued roles: husband, father, worker, home owner, friend, organizer, advocate, mentor, teacher, neighbor.[1] Anticipating the changes that come with aging, Mike requested funding for a person-centered plan from his case manager (a service option in his state). The case manager said that it was unnecessary for him to spend any of his budget on a plan because a new Federal Rule requires that Mike’s annual plan of care meeting be a person-centered plan. Mike, who has participated in many person-centered plans organized through self-advocacy, asked some questions about the required plan and concluded, “I still want the kind with the people and the pictures.”

Regulations that require a person-centered plan as a condition of receiving Medicaid Waiver funds introduce a distinction between Want-to-plans and Have-to-plans. Each can make a positive contribution; both must creatively respond to constraints. A good Want-to-plan supports discovery of possibilities and life direction and mobilizes a person’s allies at important moments in their lives. A good Have-to plan gives a person effective control of the Medicaid waiver funded assistance they rely on. Committed and skilled facilitators with the time necessary to prepare and follow-up make a difference to the impact of both kinds of plan. How well either process works for a person depends on conditions outside the planning process: the extent, diversity and resourcefulness of the person’s social network; the openness of the person’s community; the flexibility and responsiveness of providers of necessary assistance; the sufficiency of public funds for necessary assistance and the means for people to control those funds. Good plans will identify the current reality of these conditions and consider how to engage them.

Mike’s is a want-to-plan. At his initiative, he and his invited allies (the people) collaborate to create a customized process to address his desire to deal proactively with the new responsibilities and increasing impairments that show up with aging. Mike chose Michele, an experienced facilitator, to guide the process. Their agreement makes it clear that Michele is responsible for facilitating a process of change over time, not just a meeting.[1] A graphic record (the pictures), created by Alex, provides an energizing memory of what emerges, a way to track and update action plans, and a way to orient new people to Mike’s intentions.[2] Occasional check-ins and revisions guide continuing action. One-to-one meetings assist Mike in sorting through all the suggestions and offers of help he receives to assure a good fit with who he is. Mike will bring some the information generated by this work to inform the required annual person-centered support plan, but his Want-to-Plan does not substitute for it.

Mike’s experience unfolds under highly favorable conditions for any person-centered plan. He has a strong desire to assure his wife and himself the best possible old age. Reciprocity for decades of generous neighborliness, concern for co-workers and leadership in advocacy give him a diverse network to call on. He is not inhibited in asking for help when he needs it. The help he needs is largely with navigating the unfamiliar territory of selling and buying property and preparing wills and other necessary documents and demands no change in his current paid services. Hard work and careful management has accumulated equity in family home. Many Want-to-plans will need to include provision for strengthening or establishing the social and material conditions for moving toward a desirable future.

Want-to-plans can also originate in a person’s positive response to an invitation to join a process of organizational change. This sort of plan poses a challenge that an organization must stretch its capacities to meet.

Have-to-plans are a necessary step in determining expenditure of Medicaid funds on services to meet the assessed needs of eligible people. They are the final responsibility of system staff assigned to coordinate services. While the process can vary to accommodate a person’s preferences, the process and resulting plan must comply with detailed standards. The New York OPWDD Person Centered Planning Regulation Checklist enumerates 23 requirements, 21 of which track US Federal Regulations.[3]

Have-to-plans serve a worthy purpose. The rules set conditions for the person to direct the meeting, understand the results and assure that the person-centered service plan documents the person’s needs strengths, preferences, goals and appropriate services.

This checklist item, based on a Federal requirement, identifies the intended result of Have-to plans:

2‐5. The plan documents the necessary and appropriate services and supports that are based on the individual’s preferences and needs and which will assist the person to achieve his/her identified goals. [Complies with CFR 441.301©(2)(v)]

This form of words sets Have-to-plans in the context of publicly funded disability services. Offering increased influence on which available provider(s) will serve a person and how those services will be of assistance is a clear benefit of Have-to-plans when there is a real choice among providers with a capacity to individualize supports.

This standard also locates a tension that constrains Have-to-plans as two impulses struggle with each other within the same sentence. One impulse, energized by commitment to self direction and the development of people’s strengths, expresses the life a person wants to live and the supports that they prefer to live that life. The other, tied to the historical anomaly of funding US disability support as if it were a medical service, aims to select necessary and appropriate services that are clearly linked to professionally assessed need. State policy can bias the struggle toward one impulse or the other. In some states[1] the person centered plan is bracketed between an assessment of need that involves an extensive inventory of a person’s deficiencies and writing an Individualized Service Plan (ISP) that must demonstrate a direct connection between assessed need and specified services and avoid public funding of “wants” or “lifestyle choices”. Without the skillful facilitation of an intentional shift in perspective, a Have-to-plan will be primed by a focus on deficiencies and develop within unconscious boundaries set by judgements of what can realistically be funded.

A Want-to-plan can safeguard a Have-to-plan. A person and those who care can choose to create a space outside the world of disability services for conversation about a person’s identity, gifts and capacities and the circumstances that offer the best life chances. Often, as with Mike, some action will result from this conversation that requires no change in publicly funded services. When the sort of changes in services that require a Have-to-plan are necessary, a person and their allies have a foundation for negotiating what they need from publicly funded services.

____________________________________________________

[1] See for example, NJ Division of Developmental Disabilities (March 2016). Supports Program Policies & Procedures Manual (Version 3.0).

[1] Other agreements might suit other circumstances. A different person might agree to fill the necessary follow up role.

[2] Denigrating graphic records has become a cliche criticism of person-centered planning (“people have colorful pictures on their walls but their lives are unchanged”). Lack of commitment or capacity for creative action seem to me more likely causes of inaction than a vivid record of people’s thinking does.

[3] http://www.opwdd.ny.gov/sites/default/files/documents/PCPChecklist.pdfThe 22nd standard, specific to New York, defines a person-centered planning process as a right and requires written notice of that right. The 23d assures that all relevant attachments are filed with the plan. The rule itself, Medicaid Program; State Plan Home and Community-Based Services, 5-Year Period for Waivers, Provider Payment

Reassignment, and Home and Community-Based Setting Requirements for Community First Choice (Section 1915(k) of the Act) and Home and Community-Based Services (HCBS) Waivers (Section 1915(c) of the Act), was published in the Federal Register on January 16, 2014.

[1] You can view Mike’s witness to growing up in an institution and a snapshot of his life today in this 2015 TV investigation into his state’s continuing operation of institutions: http://www.king5.com/news/local/ investigations/wash-decades-behind-in-serving-developmentally-disabled-1/48265785

 

Inclusion Vs. Self-Contained Opportunities for Students in School

Debate continues even today on whether students should be educated in inclusive programs or self-contained programs.

When looking at the Individuals with Disabilities Education Act (IDEA), the law never uses the word “inclusion,” instead the law refers to “Least Restrictive Environment” or LRE.

For some students LRE cannot be achieved in a fully “inclusive” classroom. There are a number of reasons based on the individual needs of the child.  For instance, in a fully inclusive classroom the level of stimulation may be too high, the classroom size may limit the student’s ability to gain the knowledge they need or there are language barriers.  If a student is deaf and uses sign language, for example, the inclusive class may not have the ability to allow the student to “communicate with their peers in their language or mode of communication.”* However, opportunities for people with disabilities to be educated with their non-disabled peers to the greatest extent “appropriate” for the student with the disability is an essential part of the law. There is the expectation that the student with disabilities is a general education student first. Therefore, removal from the general education environment should only occur when it is determined that even with appropriate aids and services the student will not benefit.

So how is all of this decided and is there a blanket process? The answer is no. Each child’s program and services must be decided on an individual basis. The decision is not “one size fits all’ nor is it a decision that is only made once and then continued for the rest of the student’s educational career. The IEP (Individualized Education Program) Team must consider the student’s placement each year as they review the IEP and develop the new goals. Only after the goals have been created should placement be discussed. Placement does not drive services, but services drive placement options. This means that the parent needs to be a large part of the team discussions and, as appropriate, so should the student. The IEP team should consider the many factors that can have an impact on the quality of the education the student will receive.

To address these different factors the IEP team may wish to consider the following questions:

If the student is going to be in an inclusive class setting:

  • Is the learning environment able to support the child’s academic needs? For some students, the need for more specialized instruction may make learning in the inclusive environment more difficult unless supports are put in place to assist in that instruction.
  • Can the child sustain attention among the 25 to 30 students in the classroom? Classes can be large, especially as students get older, and such increases in student count can cause some students to become anxious or to lose the ability to stay focused. The need for accommodations, such as sitting at the front of the classroom or wearing earplugs, may be needed to support the student.
  • What are some of the unwritten “social skills” that a student is expected to follow and how will the learning of social cues be provided? Social skills are an area that has long been challenging for some people with disabilities. If they have not had the opportunity to learn the social cues they are at a disadvantage that can cause difficulties in learning. Some have the opinion that social cues and social skills need to be a part of the learning environment, not just for students with disabilities, but for all the students.
  • What opportunities will be made possible for the child to display their newly learned skills in different settings or with different people? Studies show that until a skill can be demonstrated in more than one setting, it is not truly learned. Therefore, when considering the inclusive environment, opportunities to demonstrate new skills should be available in different settings.
  • How will the team know if the child is gaining the needed skills outlined in the IEP? Measurable goals require the ability to show data and track progress. When considering goals in an inclusive setting the data collection should not be overlooked. The goals need to be well defined and the tracking needs to be done on a consistent basis using measurements that are understood by all.

If the team is considering a self-contained environment they may wish to consider the following questions:

  • Is the learning environment able to support the child’s academic needs?Research has shown that students who are educated in separate settings from those of their peers without disabilities, have greater learning gaps as they get older. The expectation for learning can be decreased because the student is not challenged at the same level that their peers in the general education setting might be. So, it is important to consider whether the child is being appropriately challenged academically. The team may want to look at the learning objectives for all students of that age or grade and then consider how they can adapt or address those learning objectives in a manner that will support the student.
  • Is the teacher able to address the varied needs of the all the students in the classroom? Many times, a self-contained setting will have students with a wide-range of ages and learning needs. While in an inclusive classroom students will have varied learning styles and skills, the expectation is that the students will all receive instruction in a universal manner that addresses those different learning styles. In the self-contained setting there is still the need for the learning strategies to be universal in their design to provide the greatest opportunity for the student to gain the expected skill.
  • Is there ample opportunity for the student to practice the new skills they have learned? Just as in the inclusive setting, students need the opportunity to test their knowledge and skills with different people and in different environments. If the self-contained setting does not provide for opportunities to test these new skills, it may limit the child’s learning.

The options are there for parents to consider. The questions and how they are answered may help determine the approach that is used to support the student. Remember, that while students with disabilities are to be considered general education students first, it doesn’t mean that the need to look at the full range of placement options shouldn’t occur. The decisions will be made by the team with the expectation that all decisions are based on what is appropriate for that student at that time.

Websites used for this article:

Positive Behavioral Interventions & Supports (PBIS) in Schools

By Kelcey Schmitz, MSEd
Center for Strong Schools
University of Washington Tacoma

We wouldn’t exclude, humiliate or send a child home for making an academic error.

However, when it comes to misbehavior, a typical response has been to punish or wait until the behavior escalates or occurs at a high rate or intensity before intervening. But this is changing. The direction of discipline is moving from reactive, punitive and exclusive measures to more positive, proactive and preventative approaches.

According to the National Technical Assistance Center on Positive Behavioral Interventions and Support (PBIS) (www.pbis.org), over 21,000 schools (elementary, middle, high) across the nation are implementing PBIS. As a result of using the same methods for teaching academics to students for behavior, schools report a decrease in problem behavior, an increase in instructional time, an increase in perception of safety, more positive school and classroom environments and an increase in student achievement. Taking an instructional approach to behavior is much better than waiting for problems to occur.

Positive Behavioral Interventions and Supports (PBIS)

PBIS offers an alternative to traditional discipline methods. Evidence shows that harsh and punitive responses do not change behavior for the long term and may even contribute to the erosion of relationships between students and adults. Creating a positive climate and culture contributes to parents, students and staff feeling happier about the school environment and strengthening the bond between teachers, students, and families

PBIS is a framework schools use to organize behavior supports for students. Much like the public health model, PBIS emphasizes prevention instead of waiting for problems to happen. The practices and programs range in intensity and duration depending on the level of behavior.

Just like many health issues and diseases are preventable, there are many ways adults can prevent student problem behaviors.  Many students will respond to Tier 1 prevention strategies.  In fact, we expect 80% of students to be successful in Tier 1. Twenty percent of students will need additional support in the form of Tier 2 and Tier 3 supports.

Tier 1

To effectively implement PBIS, schools identify a team that is representative of the staff in the building to learn the steps. This team, with frequent input from their colleagues, students and families, create a school wide (Tier 1) PBIS plan. The first step the team takes is to establish 3-5 positively stated expectations or pillars. Some common expectations are “be responsible”, “be respectful”, “be kind” and “be safe.”

Next, they identify a few “hotspots” throughout the school where misbehavior happens frequently. For example, teams may conclude that the hallways, cafeteria or playground are good places to start. They generally pick two locations to get “quick wins.” Lesson plans, or “cool tools”, are developed expected behaviors for each setting are explicitly taught to students. Students are taught what being respectful looks and sounds like in the classroom and non-classroom settings and then are provided opportunities practice.

Every adult that interacts with students (i.e. nutrition services, transportation, custodians, teachers, para-educators) are trained on the specific effective practices. This way, no matter where students are, they are getting consistent, predictable and positive messages.

Students are acknowledged with specific positive feedback for showing the appropriate behavior.  Positive feedback is an essential component of PBIS. Some schools pair feedback with a ticket and students can turn in their tickets for drawings or save them up and spend them at a school store or exchange them for things like school dances, VIP seating at an assembly or a front of the lunch line pass. It is most effective that for every corrective statement, four positive statements must be given. This is referred to as the 4:1 ratio.

Another essential element of PBIS is using data to make decisions. Instead of being driven by tradition, emotions, or convenience to staff, regularly collected data is summarized and reviewed by teams. The types of data teams review include office discipline referrals, suspensions, expulsions, attendance, grades and even school nurse referrals. Office discipline referrals can give teams more detailed information about the problem behavior happening in school. This is called looking at the “Big 5” data (how often, where, when, why and by whom). Drilling down allows precise problem identification and more effective problem solving. It is one thing to say “the sixth grade boys are unruly” – but much more actionable if we can create a statement with the specific information such as “between 2:00 p.m. and 2:30 p.m. in the west hallway the sixth grade boys are using inappropriate language 15 – 20 times a day, motivated by peer attention.” Now the team can brainstorms solutions.

Regular review of data allows teams to identify problems early, before they become chronic. It is much easier to address a low-level behavior than behaviors that have been practiced over time.

It is expected that schools will take 2-4 years to fully implement their Tier 1 PBIS plan. Once a strong foundation is in place, the school begins to work on supports for students in need of more than what Tier 1 supports have to offer. In many cases, school teams are guided through the steps of the PBIS implementation process by an expert in the field either within their district or outside the district.

Tier 2 and Tier 3

Just like with academics, some students will need more instructional support for social behavior skills. Advanced tiers (Tier 2 and Tier 3) offer students more practice and feedback. Students with mild to moderate problem behaviors such as being off task, talking out, difficulty getting along with others, or not following directions are good candidates for Tier 2 supports. Some examples are the Behavior Education Program, a modification of Check-in/Check-out, social skills instruction, and homework club. A few students will still need very intensive support, or Tier 3, for chronic challenging behavior. Tier 3 supports include a functional behavior assessment and behavior intervention plan and may involve a wraparound or person-centered plan, as well. A professional with substantial behavioral expertise often provides the Tier 3 supports and services.

Get Involved

Ask your school if they have a PBIS plan. A fully implemented plan involves family input and involvement and there are many other ways you can support PBIS.  For example, families can use the same expectations and apply them to home settings such as morning, homework and bedtime routines. The common language and an instructional approach to behavior provide the much-needed consistency, predictability and positivity kids need across all learning, living and leisure settings.

Find more information:

Office of Special Education Programs Technical Assistance Center for PBIS

What is ESSA?

Information on Every Student Succeeds Act (ESSA)

The Every Student Succeeds Act (ESSA) replaced No Child Left Behind on December 10, 2015, as the re authorization of the Elementary and Secondary Education Act (ESEA).  ESSA will be fully operational in school year 2017-18.

Who’s helping to make the transition to ESSA?

The Every Student Succeeds Act (ESSA) requires the State Education Agency to be the key decision maker in the development and implementation of the ESSA Consolidated Plan.  In Washington, this is OSPI, Office of Superintendent of Public Instruction.  ESSA also requires consultation with a number of state leadership members, district and school representatives, and professional organization representative Consolidated Plan Team.

OSPI will consult with the Consolidated Plan Team to develop and implement our state plan. The team includes representatives from state government, districts and schools, and professional organizations.

You can sign up at the OSPI website to receive updates as they occur.  More to follow!

 

Collaboration on Many Different Levels

This article was submitted by a parent that receives services from the Department of Services for the Blind (DSB) to share her experiences with other parents.

Check out DSV’s website by cliking here

By Emily Coleman

My son, Eddie, was born 10 ½ years ago with Optic Nerve Hypoplasia.  I learned quickly that I needed caring professionals to surround us and help us determine the best way to educate our son. I realized that without people who really knew blindness in our lives, we would be at a loss. From the beginning of his life, collaboration became not only important, but a lifeline. It also inspired me to get further involved in the field of blindness as an educator.

For the past few years, I’ve been working as a Teacher of the Visually Impaired (TVI) in Eastern Washington through the WA State School for the Blind’s Outreach program.  While working in multiple districts, I was able to collaborate closely with students, parents, and a variety of educators.  As a parent of a child who is blind, I learned quickly that everyone brought something unique to the “table” when discussing Eddie. As a TVI, I learned that was true for all children who are blind/visually impaired (B/VI).

Last spring, I moved into the position of Outreach Director at the WA State School for the Blind (WSSB) and WA State Vision Consultant with WA Sensory Disability Services (WSDS). In this new role, I’ve been able to take collaboration to a whole new level.  I’ve had the opportunity to work outside of my family, and my region, and learn from professionals around the state. It’s been a fast-paced adventure that I’ve enjoyed every day.

When I agreed to take this new position, I had to really think about the role WSSB and WSDS play and how I can best serve their missions and the students who are B/VI in our state. I obviously don’t know everything in regards to educating children who are blind…and I never will. As a parent, and as a teacher, I sought out the expertise of others and guidance through collaboration. This drive to collaborate to best serve kids is also shared by WSSB and WSDS, and so I knew that we were on the same page.

WSSB provides support to students via an on-campus program, but also supports students regionally via technology consultation, distant-education courses, online resources, professional development, contracted services, and more…including assistance with birth-through-3 services statewide. WSDS provides many of those same things, but also works in collaboration with the Deaf-Blind Project, Center for Childhood Deafness and Hearing Loss http://www.cdhl.wa.gov, WSSB, and other agencies, including DSB.

The combined knowledge and experience in WA State is substantial, and collaborating is an effective way to serve kids and move them towards greater independence. I invite you to reach out to me as a parent, educator, or consultant if you have questions or concerns regarding your own child or a student who is B/VI. Whenever possible, I’ll be a gateway to other professionals and further expertise, through the act of collaboration.

Emily Coleman

emily.coleman@wssb.wa.gov

 

So you’re at College…What Next?

Navigating the Higher Education Environment When You Live With Disability

Research over the past 20 years indicates that a fairly high percentage of college students with disability choose not to disclose that disability to a college administration.  They are tired of “being labeled” or singled out because of their situation and simply want to participate in the same way as students without disability.  This doesn’t necessarily mean hiding their disability (pretty difficult to hide a mobility device or service animal), they’ve just “had it” with permissions, meetings, and forms.

At the same time, many students get onto campus wanting not to disclose, and discover that yes, they *do* have to jump through the hoops at Disability Services in order to access strategic supports.

[If you’ve already met with the disability/access services office at your campus, and provided documents to receive services and equipment, you can skip this next section]

If you’re just beginning the access process, this is what you have to do:

  • Be able to clearly explain your disability and your specific requirements for services and equipment. It’s better to ask for more than you might expect to get, but be aware of the possibility that if the school can’t provide a service or equipment and you absolutely need it, you and your family will have to bear the expense, or you will have to find a school where such services/equipment is available.
  • Make an appointment at Disability/Access Services
  • Fill out any forms requesting services and equipment (usually available online)
  • Make certain you have all required documentation.

Below is an example of typical required documentation.  It can vary from school to school, and you will find a similar list again, usually on the school’s website under “Disability/Access Services”.

“In order for a student to receive an educational accommodation due to the presence of a disability, documentation from a professional service provider must be obtained. Professional providers may include, but not necessarily be limited to, those identified below:

Disability Category         Professional Provider

ADD ADHD                        Psychologist/Psychiatrist

Emotional disability       Psychologist/Psychiatrist

Auditory disability          Certified Otologist, Audiologist

Visual disability               Ophthalmologist, Certified Optometrist

Learning disability          Psychologist, Neuropsychologist, Learning Disability Specialist

Physical disability           Medical Doctor, Physical Therapist, Orthopedic Surgeon, Doctor of Rehabilitation

Chronic health impairment         Medical Doctor, Medical Specialist

Documentation from a professional service provider must be in writing, must be current within three years, and must include the following when appropriate:

A description of the student’s disability and how he/she is affected educationally by the presence of the disabling condition.

Identification of any tests or assessments administered to the student.

For students identified as having a specific learning disability, the assessment must be specific to the student, comprehensive, and include:

  • Aptitude
  • Achievement
  • Assessment of the student’s information processing capabilities,
  • Raw data and interpretation of the data
  • Specific educational recommendations based on the data interpreted.
  • Effect on the student’s ability to complete a course of study.
  • Suggestions for educational accommodations that will provide equal access to programs, services, and activities…”

-Source: Tacoma Community College, Tacoma, WA at: http://www.tacomacc.edu/resourcesandservices/accessservices/forms/

What Happens After the Appointment with Disability Services?

After the appointment, you’ll get an official notification from the Disability/Access Services administration informing you of your eligibility for services, and if eligible, what services you can expect to receive.

You may have to place additional calls to Disability/Access Services to determine when services begin, where to pick up equipment, arrange meetings with note takers, etc.

At most schools, YOU are responsible for notifying each of your instructors (every semester!) of your requirements for accommodations. Hang on to that eligibility letter–better yet, make multiple copies to hand out to instructors.  Having known many college instructors, I suggest you don’t send this by email alone. Hard copy rules in this case.

Informing instructors about accommodations means giving plenty of notice for them to order alternatives to conventional textbooks. If you’re doing this at the beginning of a semester, expect delays getting the material. This sometimes happens even when you had your appointment with Disability/Access Services many months in advance of the semester. If so, you may have to negotiate with your instructor for extensions on assignments.

Make sure you understand the limits of what the school is providing for assistive technology. For instance, many schools limit the loan of portable screen-readers to specified uses or time frames. You may have to provide your own equipment or software outside those limits.

Some Disability/Access offices are one-stop shopping, and can set you up with tutors, any necessary remedial courses and on-campus health services (including mental/emotional health).  At other schools, it’s very fragmented, and YOU will have to find these services separately, even when they are related to your disability.

Most such services are available through departments labeled “Student Services”, “Student Success Services”, “Counseling”, “Health Services” and the like.  If you are unsure of where to find services, you can contact staff in an office usually labeled “Dean of Student Services”.  College Deans are top-level administrators who oversee a number of related departments.  Their staff are knowledgeable about all departments under that Dean’s authority.

Who to Talk with About Issues

What if you have issues with instructors not allowing or ignoring your accommodations?

Your first step should be to re-issue your eligibility letter to that instructor, following up by requesting the Disability/Access office to notify the instructor of your eligibility through their office. If this doesn’t resolve the issue, all schools accepting federal funds will have a Section 504 Coordinator (or similar title) on campus. This person is probably on staff in the Disability/Access Services office, wearing additional hats. Complaints regarding your access to materials, instruction, and class activities go to this person.

If you’re not using a Section 504 plan but still require accommodations, all schools accepting federal funds will also have an ADA Coordinator (or similar title). This person may or may not be located in the Disability/Access Services office but that office will be able to direct you to them.

[The ADA Coordinator is also the person to see when you have an unresolved issue around physical access on campus or with any program offered away from the main campus.]

Complaints about instructors *not* relating to your accommodations are usually addressed to the Dean of Academic Affairs (yes, another Dean), or the Chairperson of the academic department for that instructor.

In most cases, it’s appropriate to discuss any concerns with your instructor before escalating a concern or complaint up the line.

Navigating the Campus:

If your disability includes physical limitations you’re already aware of how many barriers exist to full participation in any environment. Many, many schools were built prior to ADA, and their facilities reflect lots of poor accessibility design. [I attended a school that only had accessible restrooms on every other floor, and in each case those restrooms were at the opposite end of the hallway from the elevators! At another school, I had classes in a building that underwent (planned) replacement of the only building elevator during the height of the semester].

If possible, move onto campus (or visit the campus) early for some “dry runs”. Acquire a campus map to figure out the quickest to get to classes, dining halls and sports facilities.

Make friends with the administrators working at Campus Police. (They’re the ones who assign parking spaces and they also know the best and quickest ways around grounds and buildings.)

It also doesn’t hurt to know the phone number for the folks who run the facilities. This department is sometimes called Physical Plant, Facilities, or Buildings and Grounds. They’re really useful when the accessible restroom is out of order, when the elevator breaks down, and when you want to know if certain areas are clear of snow and ice.

Lots of Fuss-Why Bother?

All this navigation of a college’s bureaucracy seems overwhelming, listed here all at once. Don’t get discouraged. I’ve listed these possibilities here so you can make notes for yourself and be prepared. With luck, you’ll never need to contact some of these offices or people. On the other hand, “entropy happens”—things sometimes go sour. Knowledge is power!

Stress and Children Ages 0-3

“The perception of stress varies from child to child; serious threats may not disturb one child, while minor ones may be traumatic to another” (American Academy of Pediatrics, 2015).

Parents can’t know how stress will affect their child.  Just like adults experiencing something new, the effect of stress is different for each toddler or infant.

What kind of stress can an infant or toddler experience?

Stress related to their own disability – medical testing and surgeries, evaluations, new doctors or therapists, and medications including injections or infusions.

Social/emotional stress related to how other children or their siblings treat them.

Abuse may be physical, emotional, sexual, and/or induced substance abuse to the child, a sibling or a parent.

Sensing something is wrong related to a parent crying, shouting, or even speaking faster than normal.

An infant used to hearing a normal heart rhythm in the parent holding them, can be stressed when the parent holding the child has an increased heartbeat.

Have a parent or family member with a new injury or illness, such as dad coming home from deployment with an amputated arm; or a sibling diagnosed with cancer who can no longer play with the toddler.

Relocations, divorce, new parental figures, new child in the house, loss of a family member, loss of a pet, etc.

Anything within the family structure can cause stress to the child ages 0-3, especially if it causes stress to others in the home.

PTSD is something typically thought of when a service member returns home with signs of nightmares, heightened anxiety, or inability to talk through what they have been through.  Stress and in some cases, PTSD can be found in the youngest of children which can present in social, emotional or physical problems.

Step back a moment, remember a time in your own life when something negative had happened.  Maybe a lost job, a family pet died, there was an unwanted job transfer, or you received bad news.  Did it only impact you, or did it affect the entire family?  The stress of one family member can affect (and change) everyone in a family. An infant or toddler may not understand what is happening around them, but they can feel the tension or stress in the parent, sibling or family as a whole.

The reality is that younger children do not recognize trauma or crisis on their own, but they actually watch their parents or older siblings for their reactions to unexpected situations.  For example: when Riley, age 2, sees mom crying when she talks on the phone with her grandmother – he knows something is wrong.  Even the youngest child is very intuitive.  Will he understand that Grandpa just died? Of course not, but he knows mom is sad – therefore Riley is unsettled and stressed.  How this may manifests in a 2 year old can be very different from how mom manifests her own stress or sadness.

The younger the child the more they are likely to be sheltered from the crisis or a traumatic event.  What is known is that a child’s “early development depends greatly on the health and well-being of their parents” (National Research Council and Institute of Medicine).  As life reaches out to each family, stress cannot be avoided.  Knowing some of the causes of stress in the young child; and the signs of how stress might be seen, will provide transition to a healthier, well-adjusted family.

Some of the Typical Signs of Stress in the child 0-3 are:

Stomach or headaches

Changes in mood, more irritable, cries more, doesn’t cry when appropriate

Isolates self from others, wants to stay in bed, or under table or in closet

Unexplained changes in sleeping habits

Unexplained changes in eating habits

Fear of previously accepted people, places or situations

Some children, especially those with low immune systems (Asthma and allergies included) may run fevers when under stress

Another concern is a child’s stomach or headache, for example, may or may not be due to stress.  Whatever the cause, these symptoms are very real and confusing to the child.  If there are recurring issues with physical symptoms, the child should be seen by the primary care physician to rule out any medical issues.  If cleared medically, take a step back and look at the family as a whole.  Not to put fault on anyone, but to recognize that there may be other issues not currently being addressed.

Although an infant/toddler would not have a clue what the stress is about, they can still sense when the parents are stressed.  He/she would in turn express their own form of stress, such as displaying excessive bouts of crying, making it challenging for the parent to understand.  Some children with low immune systems may even exhibit fever with stress.

Some symptoms such as irritability could be difficult to decipher in a two-three year old, as acting out can be developmentally age appropriate.  The family would be better served to start with their primary care provider to evaluate the child’s developmental, psycho-social, and physical well-being.

If therapy is discussed for the infant/toddler, he or she would be referred to the nearest Early Intervention Services available.  Therapy may include Play therapy, Speech, or even Family Therapy.

It is just as important for the family to get help as it is for the child.  Helping the rest of the family deal with their own stress, will in turn help the child feel safer and free from stress.

Stress hits individuals of all ages, from a parent returning from war to a domestic violence victim; from the first-hand observation of a traumatic event to losing a job.  Being a member of a household with someone who is going through stress, anxiety or PTSD can also have an overwhelming impact on the family.

A child feels the result of the stress on the whole family, no matter how sheltered he or she is.  The underlying issue, whether for the child or another family member must be addressed with the entire family in mind to start the healing.

Ways to Help Families in Stressful Situations

Help parents to understand that it is not their fault – stress is a natural response to things beyond their control.

Listening to their concerns – it may just be they need to talk it through

Share your own experience (if appropriate) with family stress

Share support group contacts (as appropriate)

Encourage parent to continue to reach out to their family and friends, or Primary Care Physician, Behavioral Health Agencies, Tricare, Clergy, or Counselor.

Everyone needs to know they are not alone, that there is someone they can lean on when times are overwhelming or simply beyond their control.  Giving up control is hard to do, so many may not ask for help.  All you can do in those times is be there, letting them know you aren’t going anywhere.  When a child can feel stress within the family it is not a healthy situation for anyone in the family.  The most important responsibility you have as a parent or professional is to listen first; support the parent or family second; and only then is it helpful to offer up possibilities.