Letting Go of Our Agendas

Years ago while working at a camp for adults with disabilities, I remember sitting at a picnic table on a sunny, summer day and having a pleasant conversation with a middle-aged camper named Joe. This camp was designed to provide rest and recreation for campers, but there was no set agenda. As counselors we were trained to slow down and to cater activities to the interests of the campers. This was their vacation, and we were there to serve them.

Joe spoke very slowly and struggled to string his words together. His experience in life was that few had time to listen, often assuming that he had nothing of value to say. For those who waited long enough to “listen,” it was not uncommon for them to fill in their own words in order to hurry the conversation along. That day, Joe had a captive audience and he had much to say. Before too long I learned that Joe had an amazing sense of humor. His witty jokes and stories were worth every minute.

Several years later, I remember walking down the hallway of a school to find a young man sitting cross-legged on the floor with a huge smile on his face. His teachers were working to get him “back on schedule,” but John, didn’t appear interested in his schedule. When I sat next to him on the floor, John looked at me and then turned his gaze toward the ring on my hand. While looking intently at my hand, he laughed the kind of laugh that’s contagious. We could have interpreted this behavior as avoidance and ignored his behavior in an effort to get him “back on schedule.” But, in this case, I have to say that it was worth letting go of our agenda to connect with John in this way. John, a young man with autism, doesn’t speak in words, but he has much to say.

In remembering these moments, I wonder how often I have missed out because of an urgency to move ahead. I wonder how many people I have failed to listen to in order to achieve some goal or to accomplish my own agenda.

Special education can be driven by a sense of urgency. While our efforts to help students to gain new skills and to progress toward a future goal is absolutely important, sometimes we need to slow down and take time to listen.

Inclusion (Part 2): More than a Place

In reviewing the data on inclusion, I was struck by the lack of change in the percentage of students who are served in separate schools and facilities. So, I took a deeper look at the types of disabilities that tend to be served in separate settings. In a report from the National Center for Education Statistics (National Center for Education Statistics, 2012), I learned that of the 4-5% who are served in separate facilities:

• 30.6 % have Deaf-Blindness
• 18.5% have Emotional Disturbance
• 25% have Multiple Disabilities

Students who fall into these disability categories tend to require the most intensive supports and are often considered the most difficult to serve within regular education environments, so the statistics aren’t all that surprising. With the support of integration facilitators, speech/language pathologists, occupational therapists, paraprofessionals, and other specialists- students with severe disabilities have been successfully transitioned from separate facilities to neighborhood schools. In one study, 58 of 77 students made the transition to their home school without a re-referral to an out-of-school placement (Thousand, 1990). While there have been efforts like this to reduce social isolation for these students though increased integration in less restrictive settings, there appears to be little change in the actual number of students served in separated settings.

It’s hard to imagine that separate educational facilities will ever go away. Separate facilities may arguably be the best allocation of resources and in some cases may be the only option for addressing the complex needs of this vulnerable population of students. So, how do we address the concerns of social isolation for this group of students?

Least Restrictive Environment (LRE)

LRE should never be a onetime determination. As students gain new skills, we should see movement toward more and more inclusive environments. Schools that are designed to address emotional/behavioral needs can be a sort of educational “dumping ground.” These students are typically placed in separate settings because of disruptive behavior. Once placed in separate programs, these students are at risk for being forgotten and there may be insufficient efforts to support re-integration into less restrictive settings.

Professionals working in separate programs must make an extra effort to collaborate with professionals in less restrictive settings so that they can maintain a perspective of what’s next for students. When this collaboration is missing, the likelihood of a successful transition decreases.

Heterogeneous Groupings

Separate educational programs have a tendency to group students according to skill level. However, there is much to be gained by forming more heterogeneous classrooms. Every student, regardless of the severity of their disability, has a strength or skill that can benefit another student.

One way to do this is through school-wide shared experiences. I’ve seen this done by grouping students according to similar interests for participation in weekly clubs. Multi-age, multi-level groups of students participating in shared activities can promote unique opportunities for relationship development and skill building. This model also supports a sense of school-wide community and collaboration.

Reverse Inclusion and Peer Mentoring

Reverse inclusion and peer mentoring both involve bringing typically developing students into a special education environment. Reverse inclusion may involve pairing students for a shared social activity. Peer mentoring is usually more intensive in that it involves training a peer to provide instruction or tutoring within the special education setting.

Bringing students with intensive medical or behavioral needs into a general education classroom may not be appropriate or feasible. In these cases, reverse inclusion or peer tutoring can be a great option. It can take creativity to do this successfully. Effective implementation of either approach requires partnerships with general education teachers in area neighborhood schools who are committed to making it work.

Inclusion, undoubtedly, requires tremendous amounts of creativity and collaboration. Above all, there must be a commitment to the process for every student regardless of the severity of the disability. I’d like to believe that inclusion is possible in every setting.

References:

Data Accountability Center. (2005-2011). Individuals with Disabilities Education Act (IDEA) Data. U.S. Department of Education, Office of Special Education Programs. Retrieved from https://www.ideadata.org/default.asp

National Center for Education Statistics. (2012). Digest of Education Statistics. U.S. Department of Education. Retrieved from http://nces.ed.gov/fastfacts/display.asp?id=59

Thousand, J. a. (1990). Strategies for educating learners with severe disabilities within their local home schools and communities. Focus on Exceptional Children, 23, 3:4-24.

Inclusion (Part 1): When Numbers Fail to Tell the Story

“As late as the middle of the 1970s, an estimated 1 million kids with disabilities didn’t even attend school (NEA, 1999).” We’ve come a long way since the Individuals with Disabilities Education Act (IDEA) was enacted. IDEA was the beginning of what continues to be a fight for inclusion and for the rights of students with disabilities.

In an effort to understand our progress in this fight, I spent a good portion of my day yesterday immersing myself in the numbers. Perhaps, my biggest take away is that we’re actually keeping data on the matter. The lack of data on students with disabilities prior to IDEA is further evidence of the separation and isolation experienced by so many for so long. Thanks to the DAC (Data Accountability Center, 2005-2011), I learned that since 2005, 15% more students (ages 6-21) receive their education in a regular classroom for at least 80% of their day. To my surprise, not a whole lot has changed for students who receive services in separate facilities.

What do these numbers really tell us about the effectiveness of inclusion today? While I’m sure a master statistician would have more to say on the matter, I’m not convinced that the numbers will ever tell the full story. If we’re pushing for an increase in the sheer numbers of students spending time with general education peers, then we’re on the right track. But numbers don’t give us information about the quality of each student’s experience or whether or not their placement is truly the best match for their unique needs.

Effective inclusion is a process in which certain guidelines and questions must be considered.

I – Individualized

Special education is built on an individualized approach to instruction. In the same way, what inclusion means for one student may be different than what it means for another student. The level and method to which a student interacts with the general education community must be purposeful, realistic, and supportive.

  • Do the environments support the IEP goals?
  • Do the accommodations/modifications support meaningful participation?

N – Necessary

Every student with special needs has the right to be part of the greater educational community. The process of determining the least restrictive environment is absolutely necessary, but there must be a clear rationale for every placement decision. Without an intentional discussion about what this placement will look like or feel like for the student, all we’re left with is a percentage of time…  just another number.

  • Are the student’s rights on the table?
  • Does discussion about placement include thoughtful discussion about implementation?

C – Collaborative

Inclusion invites teams to collaborate on a deeper level. The general education perspective can only enrich the expertise of the IEP team and vice versa. However, collaboration takes time and a conscious effort on the part of each team member.

  • Are team members on board with the plan?
  • What resources are needed to support each team member in fulfilling their role?

L – Listening

Inclusion must be adapted in response to the strengths, interests, and needs of the student and the community. In education, it’s easy to jump on the inclusion bandwagon. If we emphasize an outcome without responding to the experience of the student, then we’re missing the whole point.

  • What is the student telling you about their experience?
  • Is it too much, not enough?

U – Understanding

Effective inclusion requires understanding from leadership and administration. There are real issues and challenges that require creativity in the use of resources and the management of logistics. There is a learning curve and change takes time.

  • What challenges or logistics need to be addressed to support the student or the team?
  • Who needs to be informed and what needs to be shared?

S – Safe

Safety of the student must always be considered. Some students may have difficulty with the number of transitions, the sensory input, and the level of information to be processed within a general education environment. Additionally, general education students may need to be prepared or taught certain skills. If peers don’t understand the disability or if they aren’t given information for what to expect, the student may also be at risk for bullying.

  • What information or preparation will support the safety of the student?
  • Does the environment support engagement and learning?

I – Ingenious

Inclusion challenges educators to think outside of the box, utilizing resources and technology in new ways.  Inclusion challenges us to connect creative solutions to real world issues of accessibility. If an accommodation doesn’t promote access in a general education classroom then how can we expect it to promote access in life?

  • Is the team open to possibilities?
  • Is there another approach, tool, or resource that will support a positive outcome/experience?

O –Ongoing

A student’s placement should never be static; rather, it should always be moving toward the next step as the student gains new skills. If there is a lack of progress, it may be time to take a step back and to re-evaluate the placement. If the skills aren’t generalizing, then additional support or teaching may be needed.

  • Is the student making progress?
  • Are new skills generalizing to each setting?

N – Natural

A student’s experience should be natural, not forced. If the student is resisting the environment or activity, then the team needs to consider whether or not the situation is realistic and meaningful.

  • Is the experience a match for the student’s needs, strengths, and interests?
  • What is the student drawn to?
  • What environments or relationships are familiar or comfortable?

Everyone wants to feel included, to be part of something, to be valued for their unique contribution. If there is anything to be gained by inclusion, then it is a commitment to promoting a sense community and connection that is meaningful for every student. And when the numbers fail to do so, may our shared experiences tell the story.

References:

Data Accountability Center. (2005-2011). Individuals with Disabilities Education Act (IDEA) Data. U.S. Department of Education, Office of Special Education Programs. Retrieved from https://www.ideadata.org/default.asp

NEA. (1999, May). Inclusion Confusion. NEAToday Online, 1. Retrieved from http://lobby.la.psu.edu/063_IDEA/Organizational_Statements/NEA/NEA_Today_Inclusion_Confusion_0599.htm

“Us versus Them” in Special Education (Part 3): Navigating the System

Speaking up in a culture of “us versus them” begins with courage and a willingness to venture into a world that is not our own. Yet, courage will only get us so far. Overcoming a fear of flying, may get us to a seat on the plane. But without a plan, we’re sure to get lost and a new set of fears and emotions are bound to follow. On any journey, it’s best to chart your course beforehand and to plan accordingly.

The Destination
If we want to go to France, we know that we will need a plane ticket. But a plane ticket won’t guarantee that we reach our destination. We must be specific about where we want to go. Otherwise, we might end up with a ticket to China.

In the same way, in advocating for the needs of a student, we must be specific about the outcome that we are looking for while also considering the means to reach that outcome. For example, a teacher may advocate for a 1:1 paraprofessional for a student who is demonstrating aggressive behaviors. Is the 1:1 paraprofessional the destination or is it the means to another outcome? A request like this becomes compelling when the requestor can articulate how the means supports the ends.

A Tour Guide
When traveling, a tour guide helps us to know which roads to take and what to pay attention to along the way. If our destination is France, then we want a tour guide who can translate for us and who knows how to get us from the airport to the next stop.

In the school system, knowing which tour guide to turn to for support and direction depends on the roles and the hierarchy for decision-making that are defined by a school or a district. While the principal or vice principal may be the leaders within a school building, they may or may not be the best person to seek out for guidance. It is important to determine who handles decisions related to your specific concern. Is it a building decision, a department decision, a district level decision? When in doubt, contact the special education office in your district. Administrators can be very busy, so when possible work with the office manager or director’s assistant to understand the appropriate process.

An Itinerary
An itinerary provides an order to things and helps us to prioritize steps along our journey, ensuring that we experience the best possible outcome. If we want to tour the Eiffel Tower, then we need to plan our trip so that we arrive in Paris in time for a tour.

If a teacher waits until an IEP meeting to discuss concerns about a student’s behavior and the need for additional support, the decision-maker may not even be in the room. If this person is in the room, they may feel caught and ill-prepared to respond. It is important to consider what conversations and preparation needs to occur before making a request. Scheduling a meeting or a phone conference can be especially effective in promoting a space for active listening.

A Map
A map provides a common language. There is always more than one road to the destination and a rationale for which road to take. If we get to France and are without a tour guide, the map is our tool to finding our way.

In special education, data is our map. Clear data is a common, objective language that provides information about what has occurred to date. Data defines our current location. It is a tool for determining a common destination and gives us information to guide our next steps.

When we’re lost and confused by what seems to be endless dead ends in the system of special education, we must return to our map. We must be willing to ask for help and be open to more than one way of reaching our destination.

“Us versus Them” in Special Education (Part 2): When We Choose Hopelessness

It’s been a while since I worked as a Special Education administrator. Working now as a Special Education Consultant, I have an opportunity to be that mostly objective third party, that in-between perspective. Even so, I can’t escape the reality of “us versus them.” I see it and hear it in the frustrations of teachers, administrators, and parents who are struggling to support the needs of kids with special needs. After all, it’s all about the kids, right?

It’s easy to feel trapped in our different worlds. We may feel secure in our world with the comfort of what we know. Yet, all that we need to support kids with special needs cannot be found within one world. At some point we must venture into the world of another and asking for what we need requires courage and a willingness to push past the barriers.

The journey starts with a acknowledging the emotions that may be holding you back. A teacher may choose not to speak up and advocate for the needs of a student because of a fear that doing so may result in a loss of status or even a loss of his job. A parent may worry that pushing for accountability from her child’s IEP team may put her in the category of “the squeaky wheel.” An administrator may choose to be less available because he fears that he won’t be able to respond to what is needed in the way that it’s needed. Despite your situation, anxiety and fear only lead to hopelessness.

Hopelessness may lead to inaction and a choice not to speak up for what’s needed. For others, hopelessness leads to acceptance….trudging along because that’s just the way it is. Then there are those who seek solace within their group by grumbling, complaining, or blaming another group.

When we choose hopelessness, our world only gets smaller. We miss out on possibility and we lack the creativity and perspective that it takes to move forward. If you’re willing to venture out your door, you may be surprised that what you are looking for was there all along.

“Us versus Them” in Special Education (Part 1): A Story of a Teacher Who Became an Administrator

I’m not sure why I’m struggling so much to get started on this one. I know I have plenty to say about the topic of “us versus them.” Maybe it’s a concern that I might offend someone or inadvertently reinforce the divide between administrators and teachers. Maybe it’s that I only have my experience, and thus only one perspective.

Well, here goes….

When I had the opportunity to move from a special education teaching position to a leadership role in a therapeutic day school, I was filled with hope for all that I might be able to change. I was driven by the frustrations and the disappointments that had been my prior experience of special education. As a teacher I often felt powerless and ill-equipped for all that the job asked of me. I did my best to seek support and to advocate for the needs of my students and staff, but I was left feeling hungry for a better way.

Entering the world of administration was not at all what I had envisioned. I came face to face with new challenges and a greater understanding of the broken education system. As a teacher my world was the classroom. Now as an administrator, my world was a school. The very problems that I faced as a teacher were magnified, and I was charged with finding the solutions.

First on my agenda: making space for teachers to feel heard. I had an open door policy and encouraged the staff to express their concerns directly. In the beginning, staff readily accepted the invitation. Perhaps, knowing about my experience in the classroom leveled the playing field.

I was somewhere between “us” and “them.”

Then, somewhere along the way, something changed. Fewer and fewer staff came to my door. I began to hear secondhand, third hand, fourth hand grumblings.

I became “them.”

How things shifted, I’m not certain. I just know that it felt terribly different. In a position of “power,” I now felt powerless to change the status quo.

Yet, I fought to regain that in-between status. I strived to be available and accessible to my staff. A few voices emerged from the grumbling, serving as advocates on behalf of the “us” group. At that point, I knew I would never regain my prior status.

I was “them.”

This “us versus them” mentality is a reality of human nature. We find our sense of belonging through shared groups, beliefs, and experiences. It is natural to cooperate more with your own group and to distrust or to oppose groups that are not your own.

I may be a dreamer, but I want something different. I want that place between the “us” and the “them.” I think we can all agree that the system is broken and that we want something different.

So, how can “we” solve this?

A Successful, Collaborative Behavior Intervention Plan

“Behavior is communication” has become a common phrase among special educators, and it’s a good place to start. If behavior is communication, then there is something that the child is trying to tell us. We have to pay attention and examine all of the variables in order to know how to properly support what is needed and to teach that missing skill. Behaviors get our attention, especially when they are of the disruptive or maladaptive variety. And when there are behaviors, they show up across environments. Whenever there is more than one setting, there will be multiple perspectives and insights into what is causing the behavior leading to a range of varied strategies for how to best respond.

Functional behavioral assessments and behavior intervention plans are intended to create a common understanding of the function of the behavior and alignment around the strategies to be used to support the student in gaining new skills and ultimately reducing the frequency or intensity of the behavior. While the variables within each environment may differ, these plans can be a powerful tool that can be utilized in the school, the home, and the community. Yet, these plans can also become a source of tension and confusion for team members. In some cases, the plans get created only to be filed away until the next one is due for review. What is written in the plan can also be up for interpretation and implementation may differ between teachers, caregivers, and other providers.

While working as an administrator at a therapeutic day school, I often served as a liaison between the school team, the parents, and other team members. When there was a concern or disagreement about the approach to a student’s behavior, I often became the mediator. I worked to ensure that everyone’s concern was on the table so that we could work toward common ground. 

One of my greatest challenges involved a young lady with a complex set of educational, medical, and behavioral needs. She had seizures and allergies, both requiring medication protocols. Every aspect of her care required support from an adult for every moment of every day. She had significant communication delays, both expressive and receptive. Even with access to an augmentative communication device, the team struggled to understand her communication. Interpreting her behaviors was a large part of this process. Was she hungry? Was she not feeling well?  Was she bored? It was a guessing game, and everyone had their own interpretation. As you can imagine, the confusion within the team, only led to more frustration for the student. The situation was reaching crisis-level, as the student was showing more and more aggression and self-injurious behaviors.

This student’s extensive team included her parents, a special education teacher, paraprofessional, school psychologist, the school behavior specialist, speech language pathologist, occupational therapist, consulting nurse, a private speech language pathologist, a private behavior specialist, in-home behavior therapist, and psychiatrist. Each team member brought unique expertise and worked with the student in different settings. In the beginning, the team was divided by the differences in each team member’s preferred approach. Some were pushing for applied behavior analysis, while others wanted a collaborative problem solving approach. To the proponents of each, these two approaches were in conflict. So it was a fight to settle on one approach.

In an effort to understand each setting, the school team reviewed videos of the in-home therapy, and the private behavior therapist and speech language pathologist observed in the school setting. The full team reached the conclusion that more information was needed to reach alignment in the plan and approach. Without more information the priorities would remain unclear and implementation of the plan would be hindered. So, in collaboration the private behavior therapist and school behavior therapist refined the data collection tool so that it could be used across settings. This tool improved consistency in what was being measured and reported, promoting communication between providers. The team now had what they needed to complete a thorough functional behavioral assessment and to revise the student’s behavior plan. Through this process each team member became clearer of their role in the implementation of the behavior plan. The data collection tool continued to serve as a mechanism for communication, helping the team know when a review of the plan was needed.

Perhaps the greatest outcome of this scenario was the commitment to communication within the team. While the student’s behavior continued to have ups and downs, the team had a clear plan for how to respond. Updates of the student’s data were sent to every team member on a weekly basis, which also facilitated conversations about challenges, insights, and next steps. Every team member had something to contribute, and there was a clear place and process for sharing these contributions.

A successful and collaborative behavior intervention plan requires consistent communication within the team.  If the team disagrees, “behavior is communication” will only get you so far.