Manifesto: My dream for the Jordan Klausner Foundation

I've remained with The Jordan Klausner Foundation because I've always viewed it as a frame for the ultimate goal: doing good. It seems like it has the correct elements, a good concept and everyone's hearts are in good place. We are, it seems all on one page as to what we want to do and how we want to do it. Yes, the organization has been around for about twelve years and yes, it hasn't been very visible. As always, there are good reasons for it. The staff mostly volunteers their time and arguably, without being a lean professional machine chances are lost and opportunities are wasted. I also think that something happened between now and the time that the foundation was formed. The original volunteers, the parents that  had it started and their kids moved on. Also, years later, the initial enthusiasm of the Klausner family may have been cooled by the harsh reality: It is not that easy to help people, to reach out to those who we may benefit, but they don't know it yet, to find and inspire donors. Initial setup worked when it was about close friends and family coming together for a purpose but is limiting when we need to take the next step, open up and expand. Two concepts are key to what we do and that really speaks to me:"disability" and "community". We will always do things locally, support businesses, marketers and web designers that are from here.

  When I close my eyes I see the conductive education program growing. And I see it only as a beginning. I would like the Jordan Klausner Foundation to become a center, a hub if you will, for disability therapies and awareness. Horses and water worked wonders for me, I would like to see them as part of an inclusive, structured therapy program. As well as music and art therapy, paraffin wax heat treatment and herbal baths and massages to limit the spasticity, manual therapy and working with resistance. We need to find transportation for kids especially if they are not from here and in the future, think about accommodations for families.  I grew up with  cerebral palsy which left me with a lot of self confidence/self image  issues and phobias, so I see a strong need of having a psychologist on board. A legal assistance and civil rights program is a dream pet project of mine that I always hope to fund via a grant from the Florida Bar Foundation. I would like to work with marketers and PR experts to launch a bunch of public awareness campaigns. The problem is not only in how much or how little the disability community is aware of their rights, but how individuals with disability are perceived by the public and how visible they are. I also thought about scholarships for students in advanced degree programs to  help offset problems with standardized testing I have experienced myself. Lastly, I would like for us to be involved with socially relevant art and media projects of fresh up and coming creators.

  A lot of those things cannot be accomplished without money, because for most we can't rely on volunteers to provide them, at least in a structured, continuous manner. To do this, our Foundation needs to change. We may be small, but we have to be professional. That's why I'm seeking out help from grant writers and marketers, because I'm not qualified in those areas. Any non profit needs a continuous stream of funding to hire dedicated staff that will work just on this, all the time not just part time, to make all those things happen for us. What we need now is funding. Writing grant applications has little to do with inspiring stories and visions. It's focused, detailed, technical, repetitive. This is were my experience comes in: I'm not only an attorney, but I was a chairman of a foundation that I started for two years and being a media writer for six years exposed me to enough marketers and PR people to know what needs to happen although I can't do it myself.  We can carry James Klausner's dream further if we are open minded and adapt. But we gotta get started to get started.

Step one: getting politicians to care

We call Jordan Klausner Foundation a "disability 360" organization. To us the school, the rehabilitation, the planned civil rights workshop, new forms of therapy, creating more awareness for the handicapped not only intertwine, but are pretty much one and the same. Our goal is to allow people with disabilities to live independent, fulfilling lives in an accepting environment. To empower them to take advantage of all the opportunities before them. It  starts with children.  To succeed in life you need education and  rehabilitation to rely as little on others as possible for as long as you can. As we grow our needs and goals as well as means to achieve them change. And so do the services we provide to individuals with disabilities. But our mission never does as it all stems from the same idea: to help people the best that they can be. By educating people and making them more physically able we reintegrate them into the society. The more active and visible they will be, the more they will be seen as content as successful, the better perceived they will be.  But it all starts with Conductive Education....

It's been a busy couple of weeks at the Jordan Klausner Foundation. As we always struggle financially and the campus on which our school/therapy center is located was sold to CVS (a US pharmacy plaza chain) we have a year to find a new home. And it gets tricky. We need a building that will be zoned for school and while meeting our size requirements is also able to pass the code inspections. There are only few properties that do that in the city. We can't afford to buy a building and investing a lot of money to renovate a rented space is not really a good investment.

Last week we met with Gainesville's "Mayor of Change" Craig Lowe. James Klausner wanted to try to get the city to donate one of the properties it's not using to the foundation  because however bad the shape it's in is, it will be worth it.  We don't want anything for ourselves. We do it to help Gainesville's children. We hope the city can see the benefits our foundation provides. Not only do we educate some of the most difficult to educate kids that many have give up on, but first and foremost we rehabilitate. By making the children more independent, more able, we assist the State of Florida in its' mission, we help produce more active citizens. We succeed where the government has failed.  A few weeks ago I commented on a statistic that put a price tag on Cerebral Palsy: 900,000 dollars per individual. By helping them be more functional we reduce the extent they rely on governmental services and group homes and we drive that cost down. Our Academy in Gainesville is one of the few centers in the State offering Conductive Education for free. Don't you  think that it's a benefit, an asset to the city?

We can't do anything without politicians. That's why I've been meeting with the Equal Opportunity Director, the mayor, marketers to help us form and spread  the message. The governor is following our  Twits and so was conservative hopeful George LeMieux. But can we make them understand that what we do is for the city, the county, rather the to get things from it? Without money, without a new building we will not be able to carry out our mission. Can they truly comprehend and can we fault them if they do not if that's not their experience? It's a complex problem, but I will meet anyone, go anywhere if only they listen to try to make a change until I'm blue in the face.

Conductive Education: Research and distrust and James Klausner's dream

The Peto Institute has done wonders for me growing up. I've seen countless other kids around me getting off the floor to walk the best they could: with sticks and braces, wiggling from side to side or bending knees. But they were mobile, we all were. Yet, when The Gainesville Sun journalist was writing an article  about me, when looking up any research on Conductive Education (which was the name of the method) all she could come up with was "inconclusive".

When James Klausner established our own Peto-inspired Academy in 2005, he had amazing plans that vanished years later and big dreams that never came true.  In an interview for the "Sun"  from that year he admits that while Conductive Education success with Cerebral Palsy is seen as "anecdotal" he wanted to establish a research facility that will evaluate or prove the method's usefulness using the academic community of our Gainesville neighbor, University of Florida.
It's six year later. We never got involved in any research program, Conductive Education is still facing a lot of resistance from the medical community, the programs are often small and community/family owned in America, not covered by insurance and providers often face financial problems forced to restructure as schools or nonprofits to get any kind of funding. James Klausner might have been a grieving father who lost his cerebral palsy afflicted child, but he was also a scientist.
As I observe new generations of kids getting off the floor I think to myself, why, if we see all this progress, all those children pushing themselves to be better and more able, can't we study it to  show proof. Why does it seem to escape the scientific method?
I come to a number of conclusions. Cerebral Palsy is an umbrella term. Kids that come to us are affected by it in different ways and to a different extent. Depending on how severe the condition is and what abilities it affects, "progress" can mean a lot of things and weighs on the quality of life differently. To kids that don't communicate for example any communication skill is essential. How does it measure up on any scale with assisted walking in kids that did not walk?
Just as they don't start on the same "level" of disability they come to us at different age. CE is understood as most effective when started as early as possible. How can you evaluate and make up for the age, weight, elasticity differences, years of no therapies and neglect?
Kids also come to us having tried other therapies, treatments and methods that may have benefited them and advanced them that CE later built on. How do you properly account for all that happened before?
Lastly, our groups are small and children get in and out of the program a lot. It's not constant enough to fit the scientific method requirement. Additionally, "progress" may happen at any time, not juswt within any pre-determined time period. Not only does the nature of cerebral palsy as affecting the brain  , an organ we don't entirely understand make it a highly individualized condition, but as individuals we all progress on our own schedule and in our own time.

Gainesville and beyond: How to reach parents in smaller areas?

We were overjoyed when Alachua County Today, a popular North Central Florida weekly, decided to turn our press material into a story. Primarily because it reaches readers in smaller towns like Alachua, High Springs, Newberry, Hawthorne, LaCrosse, Waldo, Archer and Micanopy. Getting the word out and media interested in Gainesville is hard enough, while a lot of communities right outside of it never get to hear about us at all. Children with Cerebral Palsy are after all born in towns and cities and villages big and small, families rich and poor, and Conductive Education is something all parents should know about as an option available to them. Our school caters to the entire county, not just Gainesville, the structure our program has is unique in Florida and we often work with children from out of State. The link http://alachuatoday.com/index.php?option=com_content&view=article&id=1616:jordan-klausner-foundation-kicks-off-camp-for-kids-with-cerebral-palsy-&catid=124:healthy-living&Itemid=400

The human factor:It starts with the Conductor

I've had a number of surgeries before arriving in Budapest. A Hospital can be pretty traumatizing for a six-seven year old and some nightmares haunt me 'till this day. Back in the 1980's, at least in Central Europe surgically correcting the hips and then cutting bellow the knee and the Achilles heel was a pretty standard procedure in Cerebral Palsy children, all requiring many weeks in a cast every time. Times were different back then and parents had only limited opportunity to visit, the settings were scary and sterile, and the nights- quiet and lonely. Before my surgeries, to spare me the trauma my mother would lie to me about why and for how long I would be there and that was the reason why I didn't trust her when she told me that Budapest would be a completely different experience. And it was. For once I felt safe, the exercises were engaging and fun and predictable. I found comfort in this predictability- you knew what was going to happen that day, nobody was being taken away for surgery, nobody had to fast, nobody was in pain. Just exercising, singing, and fun. Nobody wanted to cut me open, in fact there was no operating room at all! You perform so much better if you don't have to live in fear of what's happening next. You can relax. And your only goal is to get better.

We all developed personal relationships with conductors, part therapists, part teachers, motivators, educators and organizers. They would even make our sandwiches and serve our meals on the floor. That was the amazing thing about conductors- we used to call them "aunts" in Hungarian because in reality they were everything and anything in between. They even moved the heavy plinths around the room making them stowing them away to get ready for the next session. I remember how some of them gave me gifts, how some tried to kiss me because I was adorable as a child. We cared about these women and they cared for and about us  (I say women because men were only working in the sick wards). I remember how we all cried when conductor named Marika came to say her final goodbyes at night. She returned after her shift as we were sleeping, just to be with us a little longer. It was an experience and a memory for all of us. Even if you don't trust the Peto method and you don't know what it is, consider the role of the Conductor. They have years of training in both education in therapy. They know how to deal with children and they are Cerebral Palsy experts. They often modify routines and exercises because they know what works and what doesn't and they learn to adapt. Back home, rehabilitation wards popped up around the country, but they were in hospitals- they had white walls and hospital beds and although just like in Hungary we called the women "aunts" they were nurses.

We are lucky to have a  Hungarian conductor at our Academy. Her years of experience with Cerebral Palsy children would make her a senior conductor by now. She is an asset an every year she gets offers from other centers in America, but she feels attached to the Klausners and our Florida community. She wants to help local children, although she could easily make more money and be in a bigger facility elsewhere. What a person needs to be a Conductor doesn't always come from a classroom. You have to be a certain type of person. Loving, caring, engaging and loyal. Understanding and motivating. Human. Motherly. The human factor is what I think people overlook the most when they define or throw around terms relating to conductive education. Is it this? Is it that? Perhaps we can all agree it starts at the basic human level. With a Conductor.

Whatever works, works.

My parents would try anything that would make me better. I don't think there's a method or approach that over the years we haven' tried. When I wasn't in Budapest my parents had me go to the swimming pool twice a week, a thing that I hated and was most afraid of. I would go horseback ridding on Mondays and the warmth of the animal combined with the exercises and the smell of the forest relaxed me and made me flexible. I had a modified bike with two large wheels instead of one in the back. My mom became certified in the Doman method that was the rumoured miracle back then. We did the Bobbath, warmth therapy, massages, bioenergy therapists, healers, herbal baths that stained our tub, Japanese massage, low voltage electricity, brain scans even. Our approach has always been include as much as you can. We always had a grab bar and wall bars in the hall and an exercise mattress in the living room. My dad never wanted me to lay idly even as I watch TV I had to kick or push something,  I would stand or walk in my Hungarian braces in a lot of the spare time. My parents  always believed that any kind of therapy required a lifetime of commitment.

 I can only testify to what happened to be and what I benefited from. I'm not here to just blindly advocate for Peto, bu it did make me progress the furhest and the fastest- I ended up walking in braces and with sticks. It feels to me that many people get so caught up in the theory and theory of their little field that they lose all perspective. To me it's never about "mine is better than yours" and I feel like everything that makes a child active, move, do things on its own can only help. This isn't about egos, it's about helping cerebral palsy children. There's this odd sense that different methods compete or exclude each other. I would never tell a parent to give up on something they've been supplementing CE with. Yes, Peto as a method might be more tailored to address neuromuscular disabilities, but we are all individuals and variety is always good. And I'm happy our Conductor shares my sentiments. In an upcoming interview for Andrew Sutton's Conductive World Kata vows she would gladly dig a swiming pool under our Academy. Because if it works, who cares what is and what it's called? Try anything, try everything and do as much as you can.

Cerebral palsy costs over $900000 per person in the US

There's an interesting number contained in a not so recent publication by  Centers for Disease Control and Prevention  (A US public health agency) - "Economic costs associated with mental retardation, cerebral palsy, hearing loss, and vision impairment—United States, 2003" that puts Conductive Education in a different light. The report estimates the cost of people in America at 921,000 dollars per person. This includes not only the costs of treatment and assisted living but also things like potentially speculative things like lost income. There is always a question as to how those numbers come about and what they actually mean, but as an attorney I came to accept that we put numbers on things like death of a loved one, loss of a limb, enjoyment of life and those are pretty standard in tort law. This is not what I wanted to focus on. If Cerebral Palsy comes with such great social cost, maybe something should be done to limit its long lasting effects. Let's take a second look at Conductive Education and its potential ability to turn cerebral palsy kids into functional, independent successful people. The more a person is able to do for herself, the less of a social burden she becomes.

The division between the left and the right in the United States has also been about fiscal responsibility and spending. We are also still in a global crisis and the funds are tight. When you think about it, Conductive Education is something that both Republicans and Democrats should stand behind. It addresses both of their goals: It assists with an important social issue, it empowers the individual and it's cheaper in the log run. And it's not a virtual problem. Florida Governor Rick Scott suspended a lot of services for people with disabilities just a few weeks ago. And I agree that the situation is difficult and the budget needs to be balanced. Conductive Education centers that run as schools like ours are cost effective because we never ask for any disability  therapy based money and our services are free. We do get funded by our student's educational McKay scholarships.

I understand the Governor's motives going in, and quite frankly we want to spare those kids the lifetime of group homes and nursing homes funding for which he suspended in the first place. The earlier it starts the better the potential benefits. A stitch in time saves hundreds of thousands... per person. Think about it. If 2-4 live births per 1000 have CP and the cost of one is 921,000 then the total comes up to a pretty high bill for the State. We can take the cost down. And think of the added benefit of having involved, functional citizens that lead productive lives. Granted, not everyone is equally functional at the end and there are many things to consider but every new skill improves the quality of life. The funny thing- Centers like ours don't require a lot  other than an ability to reach parents with information and perhaps some funds so we can expand and take in more children. I would really love for Florida politicians left and right to come see why this works. Gov. Scott, Senator Nelson and the Republican challenger George LeMieux come to Gainesville. And just a reminder: I would not be an attorney today has it not been for this therapy.