51. Why not Italy??

I recently heard a mom recite the Emily Perl Kingsley poem, “Welcome to Holland.  This has been the mainstay of describing parental emotions for decades.  When I first heard it, I understood the message as a newbie parent and was also willing to accept that message and remain in Holland.  However, this time, thirty years later, I was struck with a different reaction when hearing it.

I started thinking things like:  Why can’t I go to Paris? and Who says I can’t go there? Why isn’t Italy  accessible if Holland is? and Who do I have to talk with to address this issue? Why hasn’t anybody addressed this issue yet?

The Duomo & Leaning Tower of Pisa, ItalySure, Holland is a nice place with windmills and tulips, but that wasn’t the ticket I purchased and as far as I am concerned, you can put my bags right back on the plane to Italy and issue me another boarding pass because I am not willing to settle for a segregated special place but rather equal access to the same places as my non-disabled peers.

I know I am treading on sacred mommy ground but I do wonder if this is the right message that seems destined to survive the test of time:  that simply because I have become a parent of a child with a disability, I should expect and be entitled to less than anyone else and accept the fact that Italy is only for others and not for me.  I’m sorry but I have never been able to accept that so make room in first class and see you in Italy or anywhere others go as I reject special and embrace equal.

Yes, I am an individual with a disability who is otherwise qualified to do what others do with reasonable accommodations.  Basic civil rights are not bestowed they are claimed.

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50. Exploring the World of Eligibility after Entitlement

take a number sign

Exploring the world of eligibility after entitlement, a place where only the tenacious excel.

I recently helped a friend with a disability apply for adult services. What a rude awakening to a whole other process. There is no lever of enforcement to pull that moves things along any faster. It is “get-in-line-take-a-number-and-wait-your-turn.” Unfortunately, a turn which has no mechanism to be expedited, may never come.

I believe services need to be consumer-driven and outcome-based. I have spent 22 years in advocating and teaching educational rights for children with disabilities and have often been dismayed at the lack of progress.  But that progress has been monumental compared to what has happened to adult services.

I witnessed the frustration of reaching out for service through an agency — not to be denied service — but to be told that the agency does not have enough current staff to even make the determination of eligibility in the first place. And if there were staff available to make a determination, the only possible outcomes would be a.) be denied or b.) be put on a waiting list.

The irony of an individual reaching out for help to get a job — and then being told there is no assistance because they are short-staffed was apparently lost on all but me.

A call to an ombudsman resulted in affirmation that since they were short-staffed there was nothing they could do either.

Where lies the accountability to the people they serve? My friend was told that he would receive a call in two days — but then five days later he was told that they do not have staff to process his application and have no idea when that will happen. When did the services erode like this? This was not the case years ago, when my son was provided the services his Individualized Plan for Employment (IPE) necessitated. How many people now, when reading of services they need, apply — only to be turned away without any help or even a faint promise that it will ever happen?

Yet the agencies continue to exist and open their doors each morning to offer the public false hope of assistance. There needs to be a complete system overhaul and a new age of disability client accountability for the things we are promised. Stop the waiting lists that never grow shorter and acknowledge that what you are doing is ineffective and needs to be changed.

What happened to our services once again points to who was represented when legislative cuts were made. Who became a priority and who did not? Was that determination made based upon the greatest need — or rather who was better represented when the decisions were made?

I am seeing the reality now, of the critical importance of transition planning. Following up on the process is important preparation for when our children age out of entitlements and are left to fend in a world where they have the disadvantage of any level playing field. It becomes so obvious if you have not prepared.

There is a reason IDEA puts such an emphasis on transition and preparing students with disabilities for independent living and employment. http://www.parentcenterhub.org/repository/transitionadult/ By the time a student exits the public school system, they should have acquired, through the IEP process, those skills needed to be gainfully employed, and live independently as possible so they can pursue a quality of life of their own choosing.

I often encourage parents to start thinking of transition as soon as possible after finding out your child has a disability. Start planning from the point of the initial diagnosis. It is never too early to start visualizing what your child’s life will look like as an adult and plan for that eventuality. Of course, as they grow, your vision may vary greatly from theirs, so then it becomes a planning process that you do together. All too often, the wakeup call comes as they age out of the public school system.

If they lack the necessary skills for independence, the new rule becomes “take-a-number-and-get-in-line” often immediately followed by “watch-TV-on-your-parent’s-couch,” which is not at all what we would define as “quality of life.”

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49. Transition, the Natural Progression Toward Independence

The transition process does not just happen the last year of school, I believe it begins at birth. It is what we as parents naturally do when teaching our children to take care of themselves, and that learning process continues when children enter into a public school education future graphicsystem. Everything is in preparation for life and independence. For each goal written into the IEP that begins with assistance, they should always end in independent mastery of a skill – or – the usage of a device which will grant independent access.

Public schools represent the diversity of the community in which a person lives. The schools are where we acquire the fundamental building blocks for participation in society. It is where we learn to socially interact and coexist. It is where we learn tolerance and inclusion. Purposeful segregation denies any opportunity to foster tolerance and acceptance in a classroom, in a school, or in a community. Segregation and isolation can, unfortunately, become a life sentence.

The focus on learning the skills to promote independence should be constant and continuous throughout the time spent in public school. Everything from waiting in line, getting up and arriving at school on time, to recognizing an authority figure, and that there are consequences for our actions, are all skills needed to participate in life. It is an ongoing preparation for independent living that requires careful planning and that drives the skills we need to acquire before exiting a school system and moving into post-secondary settings. The quality of life we experience is a direct result of that preparation.

I recently witnessed a meeting where a budding self-advocate was practicing her skills at an IEP meeting. She was learning to embrace her disability as being part of who she was but not defining who she could be. But as she was testing the waters, she would glance at her mother occasionally, exhibiting a learned behavior of dependence on her mother, to do things that she herself was capable of doing. I saw the mother falter and then catch herself and shift the responsibility back on her daughter. It was a proud day for both of them.

In preparation for independence, there comes a time to take the training wheels off the bicycle, let go of the seat and let them try to use skills you have taught them. Letting go is probably the single hardest thing a parent will have to do. But let go they must, to allow their children to become independent adults and experience the quality of life of their own choosing. I add this because what our children may choose is not necessarily what we may want for them.

As much as we want our children to succeed, there are times that we have to let them try and fail. It is how we learn. Always doing everything for them can create an undesired consequence of dependency and learned helplessness. The goal is to always shift from supported access to independent access whenever possible and as soon as possible.

The bottom line is: No decisions about me without me.

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48. Let’s Go To Court? Not If I Can Help It.

attorneyThere is only one type of individual that OSEP (Office of Special Education Programs) has discouraged from attending an IEP meeting and that is an attorney. While school attorneys are not expressly forbidden from attending IEP meetings, they are strongly discouraged. Question 29 in Appendix A to the IDEA 1997 regulations at 34 C.F.R. Part 300 states:

“The presence of the agency’s attorney could contribute to a potentially adversarial atmosphere at the meeting . . . Even if the attorney possessed knowledge or special expertise regarding the child (Sec. 300.344(a)(6)), an attorney’s presence would have the potential for creating an adversarial atmosphere that would not necessarily be in the best interests of the child. Therefore, the attendance of attorneys at IEP meetings should be strongly discouraged.”

Unfortunately, parents are often ill-prepared for what they will be required to do when entering into litigation. It’s definitely a David and Goliath scenario. I always tried to avoid actions that would bring the district’s attorney into the equation. The price of a stamp usually outweighs the more formal options when seeking a form of compliance or dispute resolution.

Most school systems have seemingly unlimited resources including contracts with law firms that protect the interests of their client, the school district. That includes any special education dispute. They have deeper pockets and their available resources tip the scales in the favor of the school district when it comes to litigation. It’s important to understand that FAPE (Free Appropriate Public Education) is not a guarantee, but an opportunity for accessing an education.

Now, let’s take a minute and ask ourselves exactly who benefits from prolonged litigation. Is it the student? No. The parents? No. The teacher? No. The parents’ attorney? No. They only get paid if they prevail, so their incentive is to resolve the conflict. The school board’s attorney? Perhaps. The district counsel bills by the hour and is paid regardless of the outcome or closure.

I have come to the realization that there are no winners when it comes to litigating education in court. Regardless of who wins, the trust and collaboration are lost. To some, a forced collaboration is better than none at all. The end result of any educational litigation, unless you are seeking private placement, is that you end up working again with the people you just battled in court. Also, note that of all the options available in dispute resolution, the right to request a due process hearing is the only one that doesn’t state “at no cost to the parent.” This is another reason I am in favor of being collaborative and proactive rather than adversarial and reactive. So, the best place to work out disputes is in the building where your child is served and with the school principal where eventually the service that was disputed would be provided.

So, why do I have to become a school-yard attorney to take advantage of things others just take for granted? It’s because of the residual effect of getting the laws in place and then defining their meaning by establishing case law. It’s been done and there is plenty of guidance in place, so why add more litigation? Forced collaboration is not what is best. The best option is to have parents involved at every level, from building advisory boards to district school board meetings. Try using some of your other procedural safeguards and learn to work with educators. And please, move away from the belief that everything needs to be a fight. It just isn’t so. If you are an informed, involved parent following the process of IDEA, there is no need. Parents and professionals working together provide the best outcomes for children. Informed parents make the best choices for their families. All this and not one single lawyer joke! Aren’t you proud of me?

Today I close with this mantra: “Finding ways to work through differences on a school-based level is best. The more parents are involved at the school level, the more successful and meaningful their participation becomes.”

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47. You Have to Do More Than Just Show Up

If you want positive outcomes, it’s important to do more than just show up once a year! Preparation and continued involvement throughout the year are what it takes to see adequate gains. Otherwise, the odds are that you will be disappointed and we all know you don’t want that. So, accepting the shared responsibility of monitoring and supporting your child’s education is the golden rule, I can promise you that.

Imagine that your child’s education is like being on a cruise ship. He is doing well in school and there are no problems. The teachers are great, the school is accommodating, and all seems to be splendidly ship-shape. Then, suddenly and without warning, you sail directly into an iceberg. In order to not quickly sink the ship that threatens to negate the progress and destroy trust with all of those that we assumed were watching over the course we were sailing, your involvement, responsibility, monitoring and support will will keep your ship afloat.

At a minimum, establishing clear communication and monitoring quarterly progress is pivotal to achieving positive outcomes. This ongoing participation and understanding of procedural process are what increase the likelihood of those desired outcomes. Although there is no guarantee that children with disabilities will learn, there is a guarantee that they will have an equal opportunity to learn.

Using the procedural process http://www.parentcenterhub.org/repository/pa12/  is how we do that. More than once I have heard a parent say that they do not have the time to learn the process, despite the offer of free training. Use the training! It will be much easier to make the time now than it will be when your child exits the system of entitlement and enters into post-secondary world of eligibility. What I mean is that it’s easier now than later, when they are thirty and sitting on your couch with no marketable skills or independent living options. A positive outcome would be that he or she is well prepared with job skills, working, and living independently.

The process exists and there are timelines in place to safeguard against a negative outcome. IDEA requires transitional services to be in place by age sixteen. With advance preparation, we have options in case children with disabilities drop out of school. There is a plan in place to make sure they have the skills to be employed and agencies already identified to help make it happen.

Achieving the three important goals of: being gainfully employed, living independently, and having quality of life, requires due diligence on behalf of parents. Learning procedural process set forth by federal law and applying it individually in the manner it was intended to be done will result in the outcomes you seek. IDEA is a wonderful law that has progressed and evolved over three decades to reach the point where it is today. That happened by parental involvement, much of which was expended by parents that never received the benefit for their own children, but resulted in a positive change for so many others.

knight in armorThere are times when I reflect back on the significant impact my role of advocacy had on my child’s education.  One of those happened when out of frustration, I had spent the day on the phone speaking with numerous agencies regarding issues of non-compliance.  At the end of the day I found myself in a long conversation with an attorney from a non-profit advocacy group who perhaps gave me the single most effective piece of advice and I vividly remember her words to this day. “Mr. Hawke, if you are waiting for a knight in shining armor to come and rescue you, forget it. It is not going to happen. If you want the things you need, you have to learn how to do this.”

That single statement hit me like a glass of ice water thrown in my face and launched me down a determined course to follow what she suggested. I couldn’t have been given better guidance as evidenced by my son’s successes!

So let me pass that advice on to you. Step up, learn the process and become involved. Be the difference and do more than just show up. You are your child’s best advocate!

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46. Slaying Dragons: The Art of Picking Your Battles

dragon eyeHow does one remain focused when choosing the direction in which to expend one’s energy?  As much as you might want to take on all comers and issues, there simply is not enough time or energy to do everything.  So what must be done is to prioritize what can be actually addressed.  I have always utilized a series of questions when doing this.

If the answer to any of the following five questions is, “No,” then I consider whether to simply move on:

  • Does the issue directly impact me?
  • Can I do anything to change it?
  • If I do effect change, will it have a positive outcome?
  • Is the change sustainable?
  • Can the change become systemic?

As a parent, I often found myself exerting extreme amounts of energy trying to deal with too many things at once, at a cost to both my well-being and that of my family.  As well-meaning as one’s intentions might be, the ultimate cost can be too great. When I first started on this journey, I read an inspirational poem that illustrated to me that whatever I could contribute would still matter.

I often wonder how it is that conflict in the IEP process still exists today.  IEP Team members coming to the table prepared to fight may have been necessary at one point in the past, but after all this time and litigation there is very little that has not been defined through either the complaint process or by court rulings.  One must only look to the emotions that are part of being a parent of a child with disabilities for the answer. Dealing with these emotions on a daily basis can leave some parents feeling somewhat impatient with others who will never know first-hand, the intensity of feelings that parents experience and the impact that those emotions can have.

So when fighting and slaying dragons, we may be fighting issues or creating adversarial relationships based on perceptions from myths that in reality do not exist.

By establishing clear communication between themselves and school personnel, parents may dispel those myths of fire-breathing dragons. http://www.parentcenterhub.org/repository/letterwriting/

Even if they can only “agree to disagree,” there is no need to sever all communication and declare open season on dragons.  In the world of advocacy, establishing timelines for effectiveness can be just as important as what you choose to advocate for.

The best way to slay dragons systemically is to stop supporting the belief in their existence.  Be a part of the governing system. Become part of the decision-making process on every level. If you are not at the table, your issue will not be a priority consideration.  Become part of your child’s school advisory groups.  Know your school district board members.

Work toward keeping the IEP process non-emotional, clearly documented collaborative business.  Not personal – just business.

On an even larger systemic scale, participate and represent the interests of people with disabilities. Weave disability into the very fabric of your community. I think this is the true course to follow if we are really going to see the dragons of discrimination become and remain extinct.

“Not special and separate but equal and at the table.”

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45. Rebooting Our Systems after Breaks

back to school imageIt’s now October and the school year is well underway.  I hope all you parents out there used this past summer as a time to rest and recharge your batteries as much as possible.  I am sitting here thinking of the events that unfold at the beginning of each school year, starting with the ritual of back-to-school preparations as new clothes, shoes, a backpack, and whatever else is required are purchased.  Along with the giddiness of having them out of the house finally, comes the uneasiness of another school year and worries about how it will unfold as it progresses.

Back-to-school time is the time to pick up what was set aside last year and move forward.  Attending your school’s open house provides an opportunity to meet the teachers and Principal. Also, if you haven’t already, you can find out when your school’s advisory council meets and make plans to attend.

In my experience, I have found that a minimum of two weeks at the beginning of each school year is needed just to get children on the right buses and settled into their new classrooms before stepping back up to the plate to begin monitoring the process once more.  If you haven’t already, now might be the perfect time to refresh your skills and brush up on the IEP.

Often, having competent staff that naturally meets the needs of your child can lull parents into a false sense of security or complacency. The new year may present a different school building and grade level for your child and that will result in a totally different dynamic in his or her education. This is why the procedural process under IDEA must be consistently followed by both the parents and the school district.

It is just good business to be consistent in your approach to the IEP! http://www.parentcenterhub.org/repository/iep-overview/

Investing the time now by being involved will reap benefits tenfold as the year progresses, especially if any future problems arise. Planning ahead requires establishing where you are now, what progress was made to get there, and what services were required to get it done. This is where we start when planning for a new school year. These baselines in services, progress, and outcomes will establish where we begin to build for a new year.

Consistently adhering to the procedural process is critical to reaching the long-term goal of independence that we all strive to achieve for our children. Our vigilance pays off in the consistency of the delivery of services which in turn yields a consistency in progress.

In my personal efforts to advocate for my child, I found that it was much easier to continuously remain involved and vigilant than it was to not be and then have to start over from scratch trying to undo something that occurred when I wasn’t being vigilant.

It is now time to ask a series of questions starting with: Did my child experience a significant regression during summer break that is now requiring an extended amount of recoupment time to regain the skill? Were the goals on the IEP mastered? What are the current present levels in all areas? Now that you have an idea of where you are, you can begin the process of determining where you need to go and what will be required to get there. http://www.wrightslaw.com/info/esy.index.htm


Be prepared to do your “homework” before requesting an initial IEP for the new year. Meet with the teachers and review your child’s progress before you take additional steps. Look at the data and look at your child. The data and your perception as a parent should match. Following this approach of constant parental involvement and monitoring throughout the year will negate the panic parents feel when they realize that the school year is ending and no progress was made, or that regression has occurred during a break in instruction.

Remember, it’s important to take a collaborative, proactive approach rather than an adversarial, reactive one. Parents and professionals working together provide the best outcomes for children and informed parents make the best choices for their families. http://www.parentcenterhub.org/repository/iep-progress/

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