What has happened since we last posted

My name is Stuart Flaum. I am credited with organizing the Disabilities Leadership Council. Over the past couple of years I have not contributed to the blog. However, I have made a difference as to how families across New York State and the country plan for succesful family outcomes.

Since I last contributed to the blog, I have been advocating for families, in particular, across New York State. It is my passion to create communities, with free economic enterprise as the cornerstone for financial security and succesful outcomes.

We also must encourage individuals to become advocates beginning at their teenage years. Advocacy,    develops over time, and the skill improves over time.

Encourage your sons and daughters to count, go the corner store, make mistakes, date, fall in love and vote.

Next week my 20 year old son is called to jury duty : and the grand jury in NYC to boot. Though he doesn't quite understand the full value of serving, I see this as a great opportunity to build self confidence . In addition, he will be recognized first as an individual in the courthouse.....how cool is that ?

More to come on what I promise will be a very exciting relaunch of the Disabilities Planning Council, addressing the issues that move community !

Stuart Flaum

Why are so many parents of individuals with disabilities disappointed with services?

Last week I attended a presentation on transition planning at AHRC on Maiden Lane, downtown Manhattan. I was somewhat startled by the across the board discontent of parents...

The presenters had not finished their first few thoughts before parents of individuals with disabilities were complaining that the services being promoted were not being offered or some variation on the theme.

Why does government delivery of services to individuals with disabilities not have a satisfaction survey? Why are the social service workers not held accountable? Why not explore other models whereby families can seek individualized services...rather than a delivery system so flawed in a bricks and mortar antiquated format.?

If the social service system delivering services to our kids were measured in an objective manner, would service delivery be much improved ? I think , so!

Sports, Hockey and Individuals with Disabilities

For years Stuart Flaum of the Disabilities Leadership Council searched for coaches who had an understanding for both competitive sports and individuals with disabilities. Well, we are very pleased to post this very first in a series of many articles on sports, individuals with disabilities, and their ability to handle TRANSITIONS.





You've Got a Friend in Me

By Nancy K.

Editor's note: The opinions expressed herein are those of the author exclusively.



“Am I going to skate with Anthony today?” Jake asked me on the Saturday while we were on vacation at the end of the summer.

“Do you want to?”

“Yes,” Jake replied.

There is no way to describe the feeling you have when you hear the words “Your child has autism.” My son was 14 months old when he received his official diagnosis. The neurologist advised me to get



my son early intervention, and get it fast! After the initial shock wore off, my husband and I moved into warrior mode. Over the years, Jake received (and continues to receive) countless hours of therapies. We have tried everything from supplements to social skills classes to cranial sacral therapy, and everything in between. He attended a private school program for children with autism. Now at the age of seven, Jake has been transitioned out of his private school into his home district with his peers.

Over the years Jake has tried every sporting activity we could think of. He took karate, gymnastics and music classes. We tried traditional sports, like soccer and t-ball, but Jake did not have any interest and would beg me not to take him. Finally, a friend of ours told us about a special needs ice skating program at Codey Arena in West Orange, N.J. Jake immediately took to skating and was soon asking to play ice hockey. Luckily, in the same arena, there was a special needs hockey team, The New Jersey Dare Devils.

The first few months were a bit rough, to say the least. Jake would spend more time trying to get off the ice than trying to learn the skills. However, when you asked Jake if he liked playing and if he wanted to continue to play, for the first time, he would say “Yes.” Finally, Jake had an activity that he had a passion for, looked forward to each week, where he truly fit in.

As the season progressed, Jake was referring to his teammates and coaches as his friends. The volunteer coaches, junior coaches, management and parents are the most caring group of people you would ever want to meet. Jake made a special bond with one of the junior coaches, Anthony. Each week he would ask me if Anthony was coming. As the season came to an end, I became concerned that Jake would lose some of the skills that he was working on, so I asked Anthony if he would be interested in working with Jake over the summer. I was thrilled when Anthony said he would love to.

Little did I know just how important their off-season skating sessions would become to Jake. Every Saturday, Anthony, a young teenager himself, met us at a local rink to skate with Jake. Each week, not only did we see more and more improvement in Jake's skating, Jake was talking more and more about his friend Anthony. On our last skating session for the summer, we were getting ready to go on our annual trip to Disney World. Jake and Anthony sat in the back of my minivan for a bit and held the most amazing conversation. Jake was recalling all of his favorite things about Disney and telling Anthony all about them. The conversation progressed so naturally. Anthony's father and I just stood back in amazement. Jake was so comfortable with Anthony. On the way home, I asked Jake what he was telling his coach Anthony. Jake responded, “Mommy, my friend Anthony.”

When you have a child who has autism, you live in a world of highs and lows. You live in a world where your child does not have many play dates, if any. You don't take things for granted and little moments are more special than the obvious huge ones. Thank you, Anthony, for what may have seemed to be a little moment, but in actuality, was one of the most amazing days of Jake's life

Spotlight on Parent to Parent of New York State

Today’s Disabilities Leadership Council spotlight is on the organization, Parent to Parent of New York State and its Executive Director, Janice Fitzgerald. This organization creates a support system for parents of children with disabilities by connecting them with other parents who have shared similar experiences. “We cannot underestimate the importance of providing emotional support when a parent begins their journey,” Janice said during our interview. Parents often “feel stressed after their child’s diagnosis,” so the organization aims to show these parents that they are not alone. Parent to Parent is primarily a “navigator,” teaching parents how to “navigate their way through the system” by connecting them to other support groups at no cost.

One of Parent to Parent’s defining characteristics is its system of “support parents.” Generally, the support parents have used Parent to Parent in the past and want to help others in similar situations. According to Janice, there is a training system to become a support parent; one must contact the coordinator of the training center and the coordinator will, in turn, send information for a self-preparation course. To gauge the organization’s success, a letter is sent to ten percent of the families to see if their needs were met.

Although Parent to Parent is “less well-known” than other organizations for people with disabilities in the area, it is unique because its members hail from all areas of New York. Other organizations are mainly centered in New York City, but Parent to Parent reaches all parts of the state, from the Finger Lakes to Long Island. “We have people accessing our organization from rural areas to metropolitan ones,” Janice said. The organization also has few language barriers; all printed material is available in other languages and many of the parents involves in the support program can communicate in more than one language. As Stuart Flaum, Chairman of the Disabilities Leadership Council said, “It is wonderful that Parent to Parent works with all families regardless of language, culture, or disability. There is strength in numbers, and the sharing of information and strategies benefit everyone.” In total, the Parent to Parent contains about 1,200 support parents who offer advice and somewhere between 9,000 and 10,000 who seek assistance. As Janice said, the organization sustains itself because, “There are new babies born every year, so there will always be new parents calling us for help.”

Janice is already looking toward Parent to Parent’s future. She says that in five years Parent to Parent will, “still be there for parents, to help them make it through the emotional impact of having a child with disabilities.” Also, because social networking websites have become so prominent in America, she predicts that the organization will have “more of a virtual presence.” Stuart “applauds Janice for recognizing the importance of social networking—just look at http://especialmatch.com/ for an example of how social networking is making its way into our society.” Janice hopes that New York, as a whole, will “become more supportive” of families with children with disabilities and that there will be “less institutional placement” of children. Janice is also excited about the recent collaboration of Special Needs Family Planning, Parent to Parent, the Kiwanis, and Fordham University, because “more families will be helped.” She believes that their collaboration will “help [Parent to Parent] reach families that we are not already in contact with.” Stuart added, “Fordham University opened new doors for Parent to Parent, the Kiwanis, and Special Needs Family Planning at AXA. Now, families can gather together to see their strengths as opposed to their weaknesses.” For more information about Parent to Parent, please visit their website, http://www.parenttoparentnys.org/.

Spotlight On Heidi Reichel

Today’s Disabilities Leadership Council spotlight is on Heidi Reichel, a registered special education teacher and educational consultant. She currently works with special needs students and instills in them the skills necessary to lead “self-sufficient, independent lives.” In a recent interview, Heidi discussed the problems that result from giving special education children extra, often unnecessary accommodations in schools. “Too little is expected of [special education children],” Heidi said, “They are given accommodations for things that can be taught, like learning how to work within a time frame.” She believes that schools often take the simplest route; they “reach for accommodations before they understand what limits the child.” Schools often restrict a student by not teaching or urging a child to learn. As Heidi said, “If there is something that says a child needs instructions explained, I want [the child] to have the goal to understand directions on their own. I don’t want to limit the children by not teaching them.”

However, Heidi does not oppose all accommodations offered. She simply feels that teachers should be certain that the child truly needs the accommodations before they are offered. Heidi explained that, “Theoretically, a school is supposed to find where the special education child stands with their abilities. Then, the school is supposed to make goals and determine what needs to be allowed for the student.” Despite the rules, schools often act prematurely and give children accommodations in class before their abilities are tested and compared with their peers’ skills. Parents also fight for accommodations for their children; they do not want their children to “get hurt or fail” in the mainstream classes.

According to Heidi, once special education children leave high school and prepare to enter the workforce, they realize the “crippling effects” of having too many accommodations. Often, the children cannot read or write well enough to construct a substantial résumé, or they find themselves unable to finish work on a specific deadline; they become “entitled” and cannot succeed in a world of deadlines and schedules. Heidi says that the best evidence to support her claims are the students she works with. “I have taken students who were in special education and helped them enter the mainstream classes, go to college, and lead a successful life,” she says. “In the same way that I can teach, these kids can learn.”

After years of lobbying for legislation to accommodate children with disabilities, the topic Heidi raises can potentially strike a nerve with parents. However as Heidi says, she “frequently get[s] support from parents she has worked with.” Heidi feels that the special education system is “far from flawless,” and though she does receive opposition from certain school districts, she believes that her points must be addressed. As Stuart Flaum, founder of the Disabilities Leadership Council says, “Heidi shares an interesting perspective on the subject of special education and the goal of the Council is to shed light on differing viewpoints. We don’t want to hide others’ opinions; we welcome and appreciate them.” To learn more about Heidi Reichel, please look at the blog entry below which further describes her opinions.

Accommodating Special Needs Children

The Disabilities Leadership Council recently received a fascinating article written by one of our members, Educational Consultant, Heidi Reichel. The article highlights some of the problems that result from giving special education students accommodations in schools. It also addresses some of the difficulties that special education students face once they leave high school and prepare to enter the workforce. The article is found below.

Toward the close of the last school year there were news articles about special education students who were ‘graduating’ school with IEP ‘Diplomas’ and not prepared for competitive employment. This should not have come as a surprise to anyone. Those students were on alternative assessment. They did not have to sit for any of the State tests that typical students take. They did not do the same coursework. There is no disputing the fact that, those students were not being prepared to lead self-sufficient independent lives. IEP ‘Diplomas’ were not designed for students who had the potential for competitive employment. IEP ‘Diplomas’ are not high school diplomas at all, in fact, students who have received IEP ‘Diplomas’ are still eligible to continue going to high school to pursue a regular high school diploma.

The more insidious problem, however, is that many special education students (often, but not always, classified as learning disabled) are graduating school with actual high school diplomas and are not prepared either. These students passed their classes and exit exams but they did it with the help of special education accommodations such as one to one aides, tests read, scribes, directions repeated and or simplified, and extended time. Perhaps their spelling errors were not to be counted against them or perhaps they weren’t required to fill in the bubbles on Scantron answer sheets. Graduating from high school led these students to believe that they were ready for employment or higher education. Imagine their surprise (maybe I should say shock or horror) when they found that they weren’t able to read or write well enough to fill out a job application or when they could only qualify to enroll in non credit bearing remedial courses at the local community college.

I know that a lot of teachers and parents believe that giving students special education (and 504) accommodations only levels the playing field. However, that would only be true if school was a game and the goal was just to pass the tests and eventually get a diploma. School is not a game. The purpose of school is to educate students so that they have the tools necessary to become successful independent adults. Keeping students on an artificially leveled playing field denies them that opportunity.

“But these kids would never make it without accommodations. You’re setting them up to fail!” I would never set children up to fail and I don’t want others to prevent them from succeeding. What I am advocating here, is going beyond accommodating them all the way to educating them. Teach them how to read, write, fill in Scantron forms, follow instructions and pay attention all by themselves. They will not have someone at their beckon call to help them with these things once they leave high school. Even if their aspirations are low and all they want to do is drive a car, get a job, and go out on dates, they will need to have these basic skills. I have found that in over 90% of cases if students aren’t learning, then they are not being taught (appropriately for them). By the way, it doesn’t matter if a student is being taught with a ‘scientifically proven’ method. If that student isn’t learning then that method is inappropriate for that student.

Heidi Reichel is an Educational Consultant with a private practice in Huntington, N.Y. She is primarily involved in tutoring, remediation, diagnostic educational testing, and advocacy. You can contact her at (631) 423-6215 or by e-mail at Heidi1121@att.net.

Copyright 2009 by Heidi Reichel

My Time, Inc. and Lucina Clarke

Today’s Disabilities Leadership Council spotlight is on the organization My Time, Inc. As stated on its website, My Time, Inc.’s mission is to “empower, educate, enlighten, and uplift parents of children with autism and developmental disabilities.” The Disabilities Leadership Council was fortunate to interview Lucina Clarke, the founder of My Time, Inc. During our meeting, Lucina described her inspiration and aspirations for her organization.

After spending more than ten years as a special education teacher, Lucina witnessed firsthand “the frustration of parents not getting support in raising their children with autism,” and decided to take a stand. She left teaching to “serve the needs of the whole family” and “opened [her] home” to families in need of support and understanding. Lucina applied her knowledge of children with disabilities to teach parents in Brooklyn, New York how to care for their kids while making time for themselves. When she taught, Lucina used to ask herself, “What is being done for the parents [of children with disabilities]?” By creating My Time, Inc., Lucina is now making an impact on families of children with disabilities. She made it her duty to assist parents in any way possible—by teaching them how to balance their personal lives with their parental roles, creating a network of parents, and by “adding a personal touch by giving each family valuable resources to use at home.” Besides assisting parents, My Time, Inc. works in conjunction with churches, schools, and the government to raise awareness about autism and other developmental disabilities. The organization holds numerous fundraisers throughout the year, one of the largest being a community walk at the end of May. Lucina finds community support essential to the success of My Time, Inc., saying, “A collaborative effort can be a successful effort.”

Over the course of the last two years, My Time, Inc. has expanded online to extend a support system to parents outside of the organization’s home in Brooklyn. Now, a network of communication between parents of children with disabilities is being constructed online. The organization’s growth is due in part to funds from government grants and private charities, as it is non-profit and free for any parent, grandparent, or caregiver of children with disabilities.

Currently, Lucina is using the funds raised to construct a community center for the families of children with disabilities. “It will be a community to teach [in] and learn [from],” Lucina said. The center will provide “recreational activities for families, workshops for parents, and day care,” the latter being a source of excitement for Lucina. As she mentioned during the interview, it is very difficult for families of disabled children to find reasonably priced, educated day care providers. For families attending My Time, Inc.’s educational workshops, Lucina plans to provide day care with trained personnel.

Although Lucina is busy working on many projects and fundraisers for My Time, Inc., this has not prevented her from examining the current mental healthcare system in America. During the interview, Lucina addressed the widespread discontent with the state of mental healthcare. In her words, the best way to increase coverage and improve the healthcare system is to “have your voices heard. You must be the advocates for your children.” According to Lucina, the best way to influence the government is to “take a risk” by forming a group to “e-mail Congress or petition.” She encourages change in the disabled community by remaining vocal in local, state, and national government.

For parents of children with disabilities, there “is a fight everyday.” My Time, Inc., under the guidance of Lucina Clarke helps to ease the struggle. As Stuart Flaum, founder of the Disabilities Leadership Council and longtime friend of Lucina said, “She’s an extraordinary person. Lucina is always on the move—speaking with leaders and politicians in Albany and in New York City, while working with schools, families, and volunteers to make the world a better place.” Lucina foresees greater expansion of her organization in the future and hopes that her community center will serve as a “model to create more parent community centers” across the country. For more information regarding My Time, Inc. or Lucina Clarke, please visit the organization’s website, http://www.mytimeinc.org/.