44. Focus on the Positive

I recently posted a story written by a father about his daughter on the Florida Fathers Network page. Of several comments I received, one stood out to me. It reflected that we all need to hear more about positive things and I couldn’t agree more.

girls with limo

A Night to Remember

It is so commonplace for the media to sensationalize negativity about disability and not focus on all the positive things. Granted, there are many negative issues that should be brought into the light and exposed for what they are – and there should be ways devised to ensure they are not repeated – but there are also success stories that do not get shared that would possibly paint people with disabilities in a more positive light. There needs to be a more consistent positive depiction of disability as commonplace and natural, recognizing individuals as part of mainstream society. I would trade inspirational for successful and accepted any day, just to be treated as normal. There is a major difference between normal and average; my disabilities are normal for me but definitely not average to the general population.

It is heartening to see what happens when we do take time to include people with disabilities in events others take for granted and the resulting happiness that comes from it, like this story in the Naples news. But once noble efforts like this have passed and accolades doled out to those who made it happen, all too often the general population returns to its self-serving agendas and individuals with disabilities are once again subjected to inequalities and limited access. Perhaps if society were exposed to more stories of positive outcomes, that might change. There are a multitude of success stories that occur daily yet are not deemed newsworthy because even though they might be about major victories in the daily lives of children with disabilities, they are perceived as minor milestones that others take for granted.

The first step in learning to walk that was never expected to happen, the first words coaxed forth with countless hours of speech therapy – these and so many other skills may have been ones that their parents were told their child would never be able to reach. When a child with a disability surpasses all expectations, it’s big news.

The recognition of the professionals who, every day, show up to work with limited resources, yet manage to achieve amazing results teaching the children others deemed unteachable – that should be front page news.

If we look back truthfully on our lives at the individuals that had at one point had a positive impact, at least one of those will be a teacher. For children with disabilities, from first step, first words, to first job and first apartment – these are the positive stories and accomplishments I think need to be shared for those are the real reason IDEA exists. Although some may call these details mundane, for others they seem miraculous, especially when they were considered in the past to be impossible.

Whenever I am out in the community and I see an individual with a disability working, or just participating in daily living, I have to smile with understanding at the path they had to take to get there. I count them as victorious and another exception to the rule of that what is considered average. By these examples, we know what is possible.

Society fears and rejects what is not understood. To foster understanding and acceptance, disability must become a part of daily life and not an isolated, segregated exception. With every passing year, I hope that change will happen naturally and acceptance will follow as well.

I do see flashes of what could be.

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43. Community Accountability

In regard to disability, I have become convinced that the only sustainable way to achieve equality will not come from a trickle-down effect. As well-meaning as anyone would like to believe government passage of law to be, enforcement is not consistent enough and the penalties are not severe enough for uniform implementation and acceptance. What I have noticed is that nationally isolated pockets of compliance exist based, for the most part, on the involvement of the local populace.  The more involved parents and the community are as a whole, the more likely that individuals are accepted, that services are available, and that there is compliance with the law.

paperfamilyThe first step in bringing about equality, is to make the responsibility for all individuals with disabilities in a community – both children and adults – a shared one. The saying that it takes a village to raise a child rings true, especially in this context. For this to happen requires each community to accept that individuals with disabilities should be visible and included, not just on special occasions for special events, but daily in all community events.  In an effort to provide and protect, much in the way of equality has been sacrificed as isolated, segregated environments were created instead of inclusive, integrated ones.

This can be reflected in much of the terminology we have come to accept in defining persons with disabilities – and it is so hard to overcome labels once they are placed. I am sure someone had well-meaning ideas when adopting terms such “special,” “exceptional,” and “sheltered.” This perceived need to protect, it inadvertently leads to segregation and isolation.

So the answer seems to be simple:  make disability part of mainstreamed life and not a segregated isolated portion of society. It is time that this needs to happen. There has been a promise for decades and it needs to be fulfilled. History has shown with any civil rights movement that there needs to be a consistent, unified, maintained effort to achieve this, as demonstrated by the efforts of ADAPT,  a national grass-roots community that organizes disability rights activists.

Rights are not bestowed they are claimed. It is time to claim disability as part of society that transcends all with no regard for economic status, race, gender, age, or personal plans.  Up until now disability never seemed to receive acceptance until one was personally impacted by it. Disability is not something that happens to others – but is rather something that will eventually happen to everyone.

The following quote from Brown vs the Board of Education from 1954 is so true and easily applied when discussing the education of children with disabilities today over sixty years later:

“Separate educational facilities are inherently unequal.  This inherent inequality stems from the stigma created by purposeful segregation which generates a feeling of inferiority that may affect their hearts and minds in a way unlikely ever to be undone.”    Chief Justice Earl Warren, May 17, 1954

In my chosen profession I speak with families and individuals with disabilities daily. They call seeking resources and assistance regarding a wide variety of situations with the commonality that none are positive in nature.  Over my thirty years of involvement, I have seen what can happen when we do accept disability and include it as part of everyday life as it should be: not special, not separate but part of the whole. When this does happen, the outcomes are inspirational.

“The popular belief is that protests arise when large numbers of individuals are fed up with the injustices of their lives. Actually, that rarely occurs. Rather, people rise up when they sense a whiff of hope.”  Frank Bowe, Ragged Edge

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42. Never-Ending with No Closure Ever

Many years ago roadI entered into this disability advocacy field thinking I could have everything in control within five years. Yes, I mean everything.  As you may have guessed, I couldn’t have been more wrong . I didn’t really grasp the scope of what it was that I had dedicated my life to achieve.  Thirty-plus years after I became part of the disability community, it is sometimes rather heartbreaking to look back and see just how little progress we have actually made.

I know that some will argue that point, but if you look overall and not just at specific pockets of enlightened population, I am sure that you would have to agree with me.

In the big picture, I still see isolation, segregation, and discrimination as a daily part of life for individuals with disabilities. It is disheartening when all of the negativity that exists regarding disability surfaces with such regularity, so much so that society seems to have become numb in the acceptance of it.  “This is just the way it is.”  “It’s the way of the times in which we live.”  “It’s not my problem.”

Society as a whole misses the fact that the prevalence of disability is steadily increasing.  As you read this, the population of individuals with disabilities has grown as more children were born with disabilities and as other individuals became disabled as a result of a myriad of factors.  Currently, more than 15% of the world’s population have disabilities.  Washington Post Report

So do we realize the futility of somehow expecting a universal extinction of disability?  At what point do we address disability as being as inevitable as aging? What then, as the disability community, is the thing we can do?

That answer is: creating sustainable information and support networks that work together.

The history of the disability movement reveals that when we were all able to focus on the same outcomes of equality – and sustained the effort – the goals were achieved.  The inability to maintain a sense of unity long-term within the disability community has always remained the one frustrating factor I have faced.

The one saving grace I can see in all of this, is a paradigm shift away from this being the sole responsibility of mothers and becoming the responsibility of fathers as well. I recently attended a conference and was so thrilled to see couples learning together – not just an isolated few but many – and I do believe that is what has to happen.

Mothers and fathers stepping up and assuming the roles of leadership together may stem the tide and build a foundation for a new disability movement. This would double the effort and would only require that we change the way we think and inclusively look at the entire family, not just assuming that mothers alone must shoulder the burden of responsibility.

I have reached the conclusion that I will pass on, never finishing the work I have started. Despite the effort, it will just never be achieved in the time I have left. Of course I will continue to try to champion this cause which I believe to be so important, but I also know that it will take all of us stepping up and working cohesively together in a sustained manner to actually make a difference.

I see the young and energetic members of the disability community and I smile, knowing they are the future and that somewhere along the way I have made a difference, just as all those who will now follow behind my generation of advocates will make their marks.

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41. Parents as an Untapped Resource

Parents have a vested interest to assure the success of their children with disabilities.  Asking for Help and Support

Better outcomes can be achieved by employing parents to provide parent services within educational systems. The most effective practice in the parent movement has been the building of national networks to disseminate information.  Parents and professionals now have access to evidence based best practices for children with disabilities, nationally, through those networks.  Center for Parent Information and Resourcesfamily

Why are these networks of information not utilized more often?  Why do educational agencies continue to rely on their own structure of district personnel to assist parents in their participation in educational planning, when there are federally-funded networks which are meant for that function?  I believe that in many cases this is due to the perceived potential for conflict when parents are better informed.  The irony is, though, that well-informed parents providing input in a collaborative manner results in the lessening of animosity, rather than the escalation of conflict.

Parents of children with disabilities remain the single largest untapped resource in public school systems.  I believe this approach of welcoming and embracing parents of children with disabilities to act as resources is the answer to establishing long-lasting collaborative parent/school relationships and reducing conflict. The antiquated model of gathering resources in one location and having parents come to the resource has always restricted the availability of information to only those who manage to find the point of access, and the pertinent information is enormous in volume.

A parent’s involvement in disability issues is, unavoidably, an everyday part of their lives.  With the vast wealth of information available to parents through the internet, parents are now able to research and categorize, finding resources, best practices and information that will benefit their children and consequently other children as well.

Once you become a parent of a child with a disability your world evolves to be centered on disability, and over time your peer group soon consists of other parents of children with disabilities – all of whom either have information or are seeking information.

It has been said that “Parents get their best information from other parents.”  Congress has recognized this in the forming and funding of Parent Training and Information Centers (PTIs) nationally.  PTIs projects can only be awarded to “Parent” organizations, defined as non-profits which are run by parents and staffed by parents. PTIs are funded by IDEA dollars, from the same source of money that school districts use to educate children with disabilities.

It’s only logical, then, that the IDEA-funded school district should be routinely disseminating contact information for their IDEA-funded Parent Training counterparts.

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40. Trust Given Is So Hard To Get Back Once Lost.

Trust given is so hard to get back once lost.

In the beginning, with blind trust in the professionals working with our child, there was twolittlegirlsnever a need for conflict because there was an assumption that whatever was being done was always in the best interest of our son.  During the early intervention period (Part C), when our son was so young, the services being provided were more family-centered and the process actually fostered closer relationships with the professionals that worked with our child.  This strong bond and way of working was beneficial to all.

We were so overwhelmed with all that was happening and really had no clue to the reality of the experiences that we would go through once we transitioned from Part C into Part B of IDEA when our son turned three. Transition to Preschool   He made the transition into public school seamlessly and having only the experience of early intervention to reference, we continued to move forward with the same expectations of family-centered services.

I soon learned that public school was more regimented and although I was still welcomed in the building, the degree of participation seemed to be regulated with an expectation of “we are the professionals and we definitely know what is best for your child.”  The older my child became, the greater the demands seemed to become on us as parents, to follow the rules and to trust the professionals to guide us.

For us, this trust was lost due to policies that were established on a district level and by pressure from administrators that ultimately led to what felt like a betrayal.

This is when I learned to see the school system as more than just the building my son went to every day.  The reality is this:  Our local school district is a multi-million-dollar bureaucracy, and in our community the single largest employer.  As with any large employer, there exists a hierarchy of authority – and that hierarchy has a direct effect on the actions of the lower-level front-line personnel – the very people to whom we had given our trust.

We realized that there are times when the local school staff has no control over decisions that are made as they must follow directives that are given by administrators.  We also learned that those personnel are sometimes forbidden to share certain information with us.

This hierarchy exists in every school district so the potential for a loss in communication and trust is a reality all parents must face.  So what should we do?

Establishing accountability for events as they happen will keep you from making incorrect assumptions about individuals and perhaps alienating them from your support team when they have no control over what happens.  Regardless of what events occur, it remains critical to the success of your child that you establish a way of work with all.  I have learned that sometimes all you can do is agree to disagree and move on.

boyinschoolOn the positive side, it is a lesson learned in complacency that should reinforce the need to remain involved and vigilant when it comes to the business of educating our children.  Learn to rely on your own instincts as a parent as most often they are correct.  Learn procedural process and give trust those who have earned it.

If the best you can do is an uneasy truce – though not the most desirable of dynamics – at least you are able to work together to meet the needs of your child.


Posted in Advocacy, Dads, Disability, Early Intervention, Emotion, Fathers, Florida, IDEA, IDEA Information, IEPs, IFSP, Parent Involvement, Parents Training Parents, Public School, Special Education | Tagged , , , , , , , , , | 1 Comment

39. Understanding Chain of Command, Structure and Written Policy

frustratedOften parents will experience frustration because they have identified a problem, carefully documented the course of events, and then failed to achieve resolution because they sought enforcement from the wrong person or agencies.

It is important understand what policies or practices are being applied that are causing the conflict or barrier to the goal you seek.  Once that is established it is the necessary to request a copy of the document and address it with the entity responsible for the writing and implementation. Written or unwritten, spoken or unspoken, if it is something that is routinely done it is a practice and thus becomes policy.  Establishing accountability for the policy identifies who is then responsible for the compatibility and compliance with state and federal law.

It  has been my personal experience that there is a greater success rate addressing written policy with the impact being for all the policy applies to verses individual situations that only impact one at a time.

Without a clear understanding of policy, procedures, and organizational structure parents often experience frustration and simply give up when all they are doing wrong is trying to address the issue with a person or department that does not enforce or implement that policy.  Taking the time to clarify the organizational structure will pinpoint the responsible person to address your issues with.  Unfortunately when parents are unaware of organizational structure prior to making that contact initially will often lead to an agonizing game of being passed from one person to the next while repeating the purpose of your original call over and over again.

Being told no should only mean that we are going to have an opportunity to discuss this further.  It is only when you have exhausted remedies and fully utilized the chain of command that pursing resolution in that direction should be abandoned.

I would encourage you to always try to resolve issues at the bottom of the ladder, but nothing stops a parent from proceeding directly to the top if remedy can be obtained there and there is no procedural requirement to utilize other steps first.

dadschoolIn seeking resolution to a variety of issues you will encounter throughout your child’s education it is important to first establish what is policy or practice and then identify who is the person that can impact the change needed and where to look for that resolution.  Failure to establish this from the start will result in often long periods of time waiting for an answer only to find that the ruling or finding was not favorable because it was not the venue to address it.  One of the most common misconceptions in the chain of command in a school setting is the belief that an ESE department governs a building principal. In most systems principals are only accountable to the superintendent or his appointee.  Often the barrier you are experiencing is building based and not on a district administrative level.

One of the most effective strategies is to always ask these questions. May I have a copy of the policy?  Who wrote the policy?  And Who enforces that policy?

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38. Advocating For Full Inclusion

Naturally occurring supports and services in school, neighborhood, and community are something we use every day in life and the greatest reason for advocating for full inclusion. For most of us being included is a right but for some individuals with disabilities it has become a privilege.

girlsatschoolPublic schools represent the diversity of the community in which one lives.  The schools are where we typically acquire the fundamental building blocks for participation in society.  It is where we learn to socially interact and coexist with tolerance.  Purposeful segregation denies any opportunity to foster tolerances and acceptance in a class room, in a school, or in a community.  Inclusion in all things from the beginning is the precursor to being accepted as a part of the whole community.  Segregation isolation will become a life sentence and will negate any attempt at achieving a quality of life.

Opportunities for participation, often, must be created if they do not exist.  Equal access is a right, and the need is not to create separate, special access, but rather create equal access to all existing opportunities community wide.

Focusing on three things from the beginning helps bring a clearer perspective for a parent. We want our children to be:  1) gainfully employed, 2) live independently, and 3) pursue a quality of life of their own determination.

This simple premise was the catalyst for how I determined my course of action and my boygirlbooksfocus when advocating for systemic change.  I began by seeking an inclusive classroom, then inclusive schools, and now, an inclusive community.  In my own community, I have seen the first two become reality.  The last still remains elusive, but I continue to hope that someday it will be accomplished.

There must be a zero tolerance policy toward disability discrimination. The time for excuses is past.  One cannot claim ignorance with information being so easily accessible. Continued acts of discrimination must not be tolerated.

Until the majority of people realize that disability is a naturally inevitable occurring part of life, and not something unfortunate that happens to “others,” we must remain vigilant toward trends that try, through segregation, to remove civil liberties for individuals with disabilities, and remember that rights are not bestowed they are claimed.

Posted in Advocacy, Dads, Disability, Emotion, Fathers, Florida, IDEA, IDEA Information, IEPs, Inclusion, Least Restrictive Environment, Parent Involvement, Public School, Special Education | Tagged , , , , , , , , , , , | 2 Comments