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/.

NYC Reaches Medicaid Deal

The Disabilities Leadership Council recently received an interesting news story from one of our members, attorney Wendy Sheinberg. The article details how New York state and city agreed to pay out $450 million to settle allegations that they submitted false claims for disabled patients to the federal government's Medicaid program. The article can be found at http://www.reuters.com/article/domesticNews/idUSTRE56K5YI20090721

The College Internship Program at the Berkshire Center

Today’s Disabilities Leadership Council spotlight is on the College Internship Program (CIP) at the Berkshire Center in Lee, Massachusetts. According to its website, the Berkshire Center provides “individualized, post-secondary academic, internship and independent living experiences for young adults with Asperger's Syndrome and other Learning Differences.” The program prepares students to live independently in a number of ways. It provides support and guidance for students enrolled in regular college courses, job training and internships, and helps students learn how to manage their own residential arrangements. The Berkshire Center also teaches important social and personal financial skills. The College Internship Program is also offered at three other centers around the country: the Brevard Center in Melbourne, Florida, the Bloomington Center in Bloomington, Indiana, and the Berkeley Center in Berkeley, California.

The Disabilities Leadership Council also had the opportunity to interview Karen Noel, the Center’s Admissions Director. She said that the College Internship Program generally has enough space for all of its applicants. When asked about the program’s financial aid policies, Karen said that financial aid is provided in three ways: “In California, the Berkeley Center is vendorized by the state Regional Center which provides financial aid to regional center clients coving most of the tuition, minus room and board, classes and therapy. The Student Educational Development Fund (SEDF) is a non-profit foundation developed as a means to provide financial aid to students who will benefit from the CIP program and cannot otherwise afford it. [And the] Sallie Mae TuitionPay payment program spreads payments out over 12 months instead of lump sums.” In these tough economic times, it is important that finances don’t prevent students from getting the services and care that they need.

Karen also talked in more detail about some of the services provided by the CIP. She said, “CIP’s goal is to develop a students overall well-being. Career coordination includes individual and group meetings with the intent on placing students in community service, internships and jobs. Socially, students meet one on one with mentors (usually psychology graduate students) to practice various skills in a comfortable environment as well as partake in social thinking classes.” However, according to Karen, CIP does not award diplomas or degrees; it supports students in their pursuits at nearby colleges. She said, “Students leave CIP with improved social and life skills and a better understanding of the strengths and challenges of their learning differences.”

Lastly, Karen explained where students go once they have finished the program. She said, “CIP graduates may transfer to a university, obtain a job, move into an apartment, etc. At the core of the program, CIP works individually with students to provide a foundation on which they can live independently.” The Council believes that the CIP is very important in providing support during the difficult transition from school into adulthood and the workforce, and that it practices the innovative solutions that are critically needed in the special needs community.

To read the full interview with Karen Noel, Admissions Director for the Berkshire Center, please visit http://docs.google.com/View?id=d56tc3v_5g7knj7gw

Blessed with Autism and Christina N. Peck

Today’s Disabilities Leadership Council spotlight is on the organization Blessed with Autism (http://www.blessedwithautism.com/) and its founder, Christina N. Peck. The organization helps parents of children on the autism spectrum recoup the considerable costs of therapy from their health insurance providers. In a recent interview, Christina explained why it is so difficult for parents to get these services paid for by insurance. Most of the providers of these services, which include speech therapy, physical therapy, occupational therapy, and behavioral intervention, are not in any of the health networks set up by major health insurance providers. Since they are out-of-network, parents have to pay for the services up front and out of their own pocket, and can only recover costs if their plans include out-of-network benefits. These costs are especially difficult to recoup if parents don’t have a PPO insurance plan. Christina said, “It is easier to recoup costs from private insurers than from Medicaid; you can go out of network.” Parents with an HMO can also find it tough to get reimbursement; Christina said that these parents “should get new [private] insurance. In the long run, the therapy can cost $90,000 and with this insurance you can get back maybe $50,000 of that.” Christina said that employer-provided PPO plans allow one to recoup many of the costs of therapy. This entire system is made even more difficult by the fact that there are many differences in plans not only from company to company, but even within different plans of the same company!

Christina explained how parents can claim reimbursement for their child’s therapy. She said, “The key is diagnosis codes for the type of therapy. You have to code for the medical condition being treated, not for autism. Quite often, providers don’t even put the billing codes on the bill. Parents must submit the bills and proper forms to their insurance company using codes provided by Blessed with Autism. If you submit a bill that is coded for autism, there is no chance of receiving reimbursement.” Coding for the medical condition means that the bill will be coded for the specific problem being treated, not autism. For example, for speech therapy, the bill would be coded as treatment for a speech impediment, not as treating for autism.

Christina’s book, Blessed with Autism, contains all the details on how to deal with different kinds of insurance and what the different codes and procedures are to deal with every type of therapy and treatment. The book is available on her website, http://www.blessedwithautism.com/. Christina’s hope is that, using the book, parents can complete the entire process on their own. For those parents who need help, Christina’s colleague Yvonne McNamee runs a consultation service through the Blessed with Autism website. Christine said that her main goal is to “empower people to do it themselves.”

Special Needs Organizations: The Brooklyn Center for the Independence of the Disabled

The Disabilities Leadership Council is continuing its series highlighting important organizations in the special needs community. Today’s focus is the Brooklyn Center for the Independence of the Disabled (BCID). According to its website, the BCID “[empowers] persons with disabilities by improving the quality of their lives and fostering their integration into the mainstream of society.” The Center also seeks to ensure that persons with disabilities have their full civil rights. It is highly active in advocacy for individuals with disabilities and in training these individuals to be their own advocates. Services provided by BCID include disability rights advocacy, peer support, resource information and referral, housing advocacy, independent living skills consultation, government benefits information and advocacy, and youth services.

One of the major issues that BCID is trying to work with is transition planning, for young adults transitioning from the school system into the workforce. The Disabilities Leadership Council was able to interview Raphael Rivas, the BCID’s Youth in Transition Coordinator, to try and learn more about the issues facing these young adults. He said that a big problem is that many young adults aren’t aware that they have a disability, whether it be a learning or developmental disability. Raphael said, “They’re not aware of it while they’re in school. Because they don't realize they have a disability, they may not be fully prepared for an interview. They more often than not don't know if they should disclose their disability if they even know that they have one.”

Raphael also explained that the current educational system is inadequate for persons with disabilities. He said that many individuals are getting a diploma called the IEP diploma, which (unlike the GED) is not a substitute for a regular high school diploma. Because of the IEP’s shortcomings, many employers are unwilling to hire students who only have the IEP diploma. Raphael said, “These students are leaving the system lost. They are falling through the cracks and not getting the services that they need.” He said that New York is phasing out the Local High School Diploma. Raphael said, “There is more potential for failure at this point, since students have to get either the GED or the regions diploma to be attractive to employers.” When asked about the current state of transition planning, Raphael said that the system currently in place in New York City is inadequate to serve the needs of the students. He said, “Transition plans in New York City are poor and generic, not tailored specifically to each individual.”

Lastly, Raphael talked about how the system of caring for persons with disabilities will change in the future. He said that, as awareness of these issues increases, more people will become involved in helping to solve the problems. More individuals with disabilities will also become involved in advocating for themselves, which will accelerate the drive towards solutions. Disabilities Leadership Council founder Stuart Flaum said, “I think Raphael really speaks for young people in transition. He really understands the needs of youth in transition, in part because he sees them struggling for success as measured by the higher standards that an employer expects.” The Council invites our readers to comment on the blog, because this issue is going to become extremely significant in the special needs community.

Spotlight On: National Autism Association-New York Metro Chapter

The Disabilities Leadership Council is focusing today on the New York Metro Chapter of the National Autism Association (http://www.naanyc.org/). Unlike many other non-profit organizations, the main focus of the chapter is not on fundraising for families, research, and advocacy. Instead, its mission is to “educate and empower those in the Autism community.” In a recent interview, Sabeeha Rehman, the president of NAA-NY Metro, explained that the chapter is distinct in that “we work closely with families and parents that have been affected by autism. We are a parent-centered group that seeks to educate and support parents.” She also talked about how the chapter provides this support in four main ways. The chapter holds two sessions every month, each with a different purpose. One session is an educational session, in which the chapter brings in a nationally recognized expert to talk about an issue related to autism. Recent issues included the Tomatis therapy system, financial planning, and applied behavior analysis (ABA) treatment. The second session is a Parent Network Exchange Meeting, in which parents participate in a discussion moderated by an expert facilitator. At the latest meeting, the facilitator was an expert in Relationship Development Intervention, another type of therapy for children on the autism spectrum. These sessions are also designed to help parents network with each other. According to Mrs. Rehman, NAA-NY Metro is rolling out a third monthly session starting this September, which will be a support group moderated by a social worker. The chapter also runs a parent mentoring program called NAAvigators, where parents who have expertise and experience act as mentors to families who are new to the autism community. The mentors help them navigate through all the complexities surrounding having a child with autism. Mrs. Rehman said, “This program of one-on-one assistance really helps families cope.”

When asked about how effective the chapter has been so far, Mrs. Rehman said, “We have been very effective. Through our initiatives we have been able to educate parents on a broad range of topics, such as different treatment modalities.” After 18 months of existence, the chapter now has about 600 members, both families and individuals. She also talked about how the organization is active in the media: “We are solicited by the media each time there is a breaking story on autism.” Mrs. Rehman also explained how active the chapter is in lobbying for or against legislation in Albany. While the chapter is restrained by finances from launching big campaigns for or against various pieces of legislation, it does inform its members about pending legislation and urges them to email their local representatives echoing the chapter’s position on it. The chapter is also part of a statewide coalition of autism organizations who pool their resources to support bills already on the floor and try get others introduced.

The NAA-NY Metro Chapter has its own website and blog, where you can get more information on the organization and on past and upcoming events. Disabilities Leadership Council founder Stuart Flaum said, “NAA-NY Metro is very forward-thinking. Their seminars and sessions present outside-the-box solutions, which are the type of solutions we’re looking for too.”

Special Needs Professional: Bruce Lish, DDS

Today’s article is on another important professional in the special needs community. Dr. Bruce Lish is the Chairman of Dentistry at St. Luke’s Roosevelt Hospital in New York City and runs his own private dentistry practice in Brooklyn, NY. Dr. Lish provides specialized dental care for individuals with disabilities. Unlike most dentists, Dr. Lish always employs general anesthesia for routine dental work like cleanings and X-rays. This extra step is necessary to allow him to perform these procedures on some individuals with special needs. Indeed, in a recent interview Dr. Lish said that, “If general anesthesia is not necessary, I don’t do the work. I only see patients that cannot be seen by a general dentist and who need an operating room and general anesthesia.” Dr. Lish said that, as a dentist who works in a hospital, he is uniquely positioned to take advantage of the facilities offered by the hospital and provide care for these individuals. These include operating rooms that are needed to perform some of these procedures.

When asked about his mission, Dr. Lish said, “This population needs quality dental care. Of course, everyone deserves great dental care, but most people are capable of getting it on their own. This population has very limited outlets, and I enjoy being able to provide for this population.” Dr. Lish also noted that it can be difficult to deliver proper dental care to young adults who have moved out of the guardianship of their parents. He said, “It’s our responsibility to take care of those who can’t take care of themselves. These individuals need the care and we’re here to provide it.” Lastly, Dr. Lish noted that, while dental care is important, it is a part of a broader picture of general health and well-being. Individuals with special needs and their families must ensure that they are healthy medically and dentally, in order to lead fulfilling lives. The Disabilities Leadership Council strongly supports Dr. Lish’s work in the special needs community, as a provider of essential services to these individuals. Founder Stuart Flaum said, “The work that Dr. Lish is doing for this community is wonderful. Health and well-being are important not just for individuals with special needs, but for everyone.”

Fourth of July

Due to the holiday, the Disabilities Leadership Council is not posting on the blog today. Happy 4th of July to everyone, and we'll be back with a new post on Monday!

Spotlight On: Mike Radicone and eSpecialMatch.com

The Disabilities Leadership Council is continuing its series highlighting important organizations and individuals in the special needs community. Today we’re focusing on eSpecialMatch.com, a social network for families with special-needs children and organizations active in the world of special needs. The goal of eSpecialMatch.com is to bring families together to share their experiences, and to connect families with providers of important services. Organizations can also post events and updates on the site.

The editors of the Disabilities Leadership Council’s blog were fortunate to have the opportunity to interview Mike Radicone, the founder of eSpecialMatch.com. He has extensive experience in special needs education, having worked as a teacher of children with special needs since graduating from college. Disabilities Leadership Council founder Stuart Flaum said, “It’s wonderful that Mike has found so many ways to contribute to the special needs community. His website is truly innovative, and has done a lot to bring people together.” In addition to running eSpecialMatch.com with his wife, he continues to teach at a school on Long Island in New York. Indeed, eSpecialMatch.com has no other employees; the website more or less runs itself. Mike did say that he tries to “update the site every couple of days, to make sure it is fresh. I make sure that its working, send emails to members, and send out a monthly newsletter. I also keep a running blog on the site.”

Mike originally was inspired to start eSpecialMatch.com when he was searching the iTunes database and the site automatically ordered his results by those that most related to his search. Mike said, “I thought it would be cool to match families that way. Parents would fill out criteria, which would then go into a searchable database. People could then search out database and look for people to match up with.” Mike also said that he used existing social networking sites like Facebook to help him model his site. He said his teaching experience helped him in coming up with the criteria which parents would fill out for the website. Mike says that “I tried to create a broad spectrum for the profiles, so that families could know as much as they could about a possible contact.”

According to Mike, eSpecialMatch.com is a for-profit company. However, all of its revenue comes from advertising, and it is 100% free to join and be a member. The site does not receive outside funding from either the government or other non-governmental organizations.

So far, says Mike, eSpecialMatch.com has been “moderately successful in achieving our goals. We launched 18 months ago and by now we’ve worked all the bugs out and have a fully functioning, working site. We’re currently focusing on getting more members.” eSpecialMatch.com currently has a strong, nationwide base of membership that is concentrated on the East Coast. Mike says that he looks to gain new members in several different ways. He searches the web for other special-needs organizations to trade links with them, to have his website written about in as many places on the web as possible; he has placed an advertisement on Facebook; and he goes to conferences and workshops to give presentations about the site and meet with families and other professionals. According to Mike, this last method is the most effective, as it is the best way to educate people about his site and show that it is open to anyone affiliated with the special needs community. Mike also said that he keeps profiles on a number of different social networking and blog sites: “I use Facebook, LinkedIn, Blogspot, Tumbler, and Twitter. We basically have as many free social networks and blogs you can have, which keep updating to the site.”

Mike has also made sure that eSpecialMatch.com is free from predators and solicitors. The site is hosted on a secure server, and Mike immediately removes any solicitors that are reported by the site’s members. However, people who are unfairly removed can petition to be placed back on the site. Mike says that profiles must be created by a parent or legal guardian, not by an individual with special needs, for the reason of security. Mike fears that these individuals might be preyed upon unless they are deemed capable to run their own profile by their guardians. A profile can be given over to an individual after it is created.

Mike’s ultimate goal for eSpecialMatch.com is to make it a “one-stop shop for anything to do with special needs.” Not only does he envision developing a wide array of professionals who have profiles on the site, he also has allowed members to post book reviews, travel recommendations, and events. In this way, said Mike, “Families with questions about anything can come to our site and get answers for them.”

Spotlight On: Difficulties Faced by Aging Caregivers

The Disabilities Leadership Council is continuing its series spotlighting important issues facing the special needs community. Today, we’re discussing the difficulties facing aging parents of individuals with special needs. These parents must take care of themselves as they grow older, but they must also continue to provide for their children with special needs into adulthood. Issues also arise when the primary caregivers pass away. This event put a great financial strain on the individuals with disabilities who are left behind. It also exacts an emotional toll, as these individuals must cope with a sudden and drastic change in their life.

Fortunately, scientific research is being done into the challenges facing these families. Studies into aging families with a developmentally disabled son or daughter have been conducted jointly by Dr. Marsha Mailick Seltzer of the University of Wisconsin-Madison and Dr. Marty Wyngaarden Krauss of Brandeis University. On Dr. Seltzer’s website, http://aging.wisc.edu/research/affil.php?Ident=60, the stated aim of her research into this field is to “examine the pattern of age-related changes and transitions in these families, how the changes affected the son or daughter with the disability, and the antecedents and consequences of out-of-home placement of the adult child.”

When asked why she chose to conduct this line of research, Dr. Seltzer said, “We became interested in this research topic more than 20 years ago to investigate an unstudied and poorly understood phenomenon: the dual challenge facing aging parents of adults with developmental disabilities…Our goal was to identify factors that led to resilience in these families.” Dr. Seltzer also said that some solutions to ease the difficulties faced by these families have emerged from her extensive research. She said, “First, it is important for families to plan ahead and to involve the entire family, including the adult with disabilities, in this planning process. It also is sometimes helpful for the person with developmental disabilities to move to his or her own home, or move to some type of supported living arrangement, before the parents die, so that both transitions do not have to happen at once… it's important to continue to provide services to those adults who have significant behavior problems no matter what age they are. Indeed, there is a lifelong need for supportive services and older adults have just as much of a need and right to them as younger persons.”

When asked about this new research, Disabilities Leadership Council founder Stuart Flaum said, “I think Dr. Seltzer has recognized that we have an aging generation of parents and it’s compounded by the dynamics of caring for an individual with disabilities. This is a very important conversation for all families to have and I commend Dr. Seltzer for her science-based approach.” Hopefully, with increased knowledge about these problems, new and innovative solutions can emerge, like the ones already proposed by Dr. Seltzer and her team. The Disabilities Leadership Council believes that new scientific developments are critical to our mission, as they are essential to generate better outcomes and improve the quality of life for individuals with disabilities.

To read the full interview with Dr. Marsha Mailick Seltzer of the University of Wisconsin-Madison, please visit http://docs.google.com/View?id=d56tc3v_4fmgv4ccp.

Invitation to Members

The Disabilities Leadership Council is now accepting articles for our blog from members. Any member who would like to be published can simply send his or her article to disabilitiesleadershipcouncil@gmail.com, and it will be posted shortly after. If any members have any topics they would like to see featured on the blog, they can comment on this post and we'll do our best to get an article on the subject as the next post. Thank you!

Spotlight On: Rethink Autism

Today, the Disabilities Leadership Council is continuing its series highlighting organizations which provide services to individuals with disabilities and their families by focusing on Rethink Autism. As stated on their website, Rethink Autism’s mission is to “offer parents and professionals immediate access to effective and affordable Applied Behavior Analysis-based treatment tools for the growing population affected by autism spectrum disorders.” Rethink Autism delivers these tools, which are based on the latest scientific research into ASD, through its website, www.rethinkautism.com. This approach allows for more effective treatment, as a child’s progress can be tracked by numerous individuals (including both family members and professionals) from any computer that has an Internet connection, anywhere in the world. According to its co-founder and CEO, Daniel Etra, the company was founded to “take such science-based best practice programs only available in a limited capacity, turn the model on its head, and use technology and the internet to make these programs available to any family or professional no matter where they are located. We also made sure to remove clinical jargon and translate these programs into a language that’s easily understandable by anyone.” Mr. Etra also said that he decided to start Rethink Autism when, after talking with friends with family members on the autism spectrum, “it became clear what a tremendous problem it is for families to find access to effective and affordable services.”

Rethink Autism is truly innovative, with a totally fresh approach to autism education. For $100 a month, families receive unlimited access to four essential services: a customized Applied Behavior Analysis (ABA) curriculum, video based lessons, automated scheduling, and progress tracking. Parents and professionals use the website to customize programs for their children based on their specific needs. The ABA method is at the heart of Rethink Autism’s offerings. According to Mr. Etra, ABA “is the only treatment methodology recommended by the American Academy of Pediatrics (AAP), the US Surgeon General, the National Institute of Health and other organizations…The problem with ABA is the limited supply of trained professionals and the tremendous cost of such treatment. The AAP recommends a minimum of 25 hours of ABA intervention a week, but the only way a typical family will be able to meet this number is if whoever is physically spending time with the child uses that time to implement intervention exercises. This means that babysitters, siblings, family members, etc. must all be part of the treatment process; and the only way they can do so is to be taught how to implement.” Automated scheduling helps parents and professionals keep track of their teaching curricula at various stages of completion. Through this tool, Rethink Autism will also recommend certain lessons for children. Lastly, progress tracking is a vital tool in the treatment of ASD, and in this field Rethink Autism has excelled. Their website makes it easy to upload the results of lessons in various categories and track a child’s progress in each of them. Thus, it is easy to pinpoint areas in which the child is doing well and areas in which he or she needs improvement. The areas in which the child needs improvement can then be focused on by a therapist or other professional.

Rethink Autism is truly a pioneering company; its approach has totally changed the way professionals think about autism education, and has challenged older thinking about how to most effectively treat children with ASD. Rethink Autism is also unique in putting tools in the hands of parents at a low cost, so that in the same price as an hour or two with a therapist, a family can have unlimited access to a vast array of teaching tools. The Disabilities Leadership Council believes that the work of Rethink Autism advances our own mission, to find solutions for individuals with disabilities. Like the Council, Rethink Autism combines expertise from many fields; Mr. Etra said, “We have assembled an expert team across three key disciplines – video production, technology, and treatment.” Council Founder Stuart Flaum said, “Rethink Autism has moved beyond older, failed methods and has developed effective solutions by combining science and technology.” By employing this approach, the Disabilities Leadership Council hopes to find more solutions to other problems facing individuals with disabilities.

To read the full interview with Daniel Etra, CEO of Rethink Autism, please visit docs.google.com/View?id=d56tc3v_0fsrxs3db

Issues Facing the Special Needs Community: Private vs. Public Education

The Disabilities Leadership Council is continuing our series today highlighting important special-needs issues and education.

Issue: Special Needs Education
Today, the Supreme Court heard and voted on the case of Forest Grove School District vs. T.A. In this case, parents of a teenager with special needs from Oregon sought reimbursement from their local school district for the cost of sending their son to a private school. They argued that, since the local public school had inadequate resources to meet the needs of the student, the school district should cover the $5,200 a month it cost to send the student to a private school. In a 6-3 ruling, the Court upheld the right of the parents to seek tuition reimbursement from the public system. The majority opinion, written by Justice John Paul Stevens, said that under the federal Individuals with Disabilities Education Act, parents of students with disabilities have the right to seek education outside of the public system if it doesn’t provide adequate services, and that the parents also have a right to reimbursement for this private education.

This decision is having significant ramifications for special-needs education advocates. Susan Luger of New York’s Susan Luger Associates is one of the country’s most prominent advocates, who aids families in finding the right educational programs for their children who have special needs. Disabilities Leadership Council founder Stuart Flaum said, “Susan is one of the most intuitive and intelligent advocates for individuals with disabilities I have ever met. I have known Susan for a decade and I cannot think of a family for whom she has not found an effective solution.”

When asked about how this Supreme Court decision impacts her work, Susan said. “It impacts [my work] greatly because the parents of students who have special needs but who have not attended public schools will no longer have to worry about whether they can receive reimbursement. Parents will be able to place their children in the programs that they need, and won’t have to try a failed public system.” However, Susan did also say that the decision does not mean that parents who place their children in private programs will automatically receive reimbursement from the school district. She explained that parents can only receive reimbursement if an independent hearing officer determines that the public programs in place are inadequate to meet the needs of the student. She said, “If the Department of Education can prove that their program can meet the student’s needs, it doesn’t have to pay anything. In most cases, parents do prevail.” The Disabilities Leadership Council hopes that this decision does translate into more effective solutions for students with disabilities, and that it prompts reform in a public school system that Susan described as “totally failed.”

Note: Source material for this post came from the Associated Press’ coverage of the Supreme Court case. The full article is available at http://hosted.ap.org/dynamic/stories/U/US_SUPREME_COURT_SPECIAL_EDUCATION?SITE=AZPHG&SECTION=HOME&TEMPLATE=DEFAULT

Spotlight On: Douglass Developmental Disabilities Center

The Disabilities Leadership Council also plans to regularly feature organizations on our blog that provide help to families and individuals with disabilities. Today, we're focusing on the Douglass Developmental Disabilities Center at Rutgers University in New Brunswick, NJ. The center provides a wide array of services, including school programs, adult and transitional services, outreach services, and research and training. Also provided are examination services for individuals with ASD and other developmental disabilities.

The DDDC also is highly active in scientific research on developmental disabilities. As a part of Rutgers University, the center has access to all the resources of a major research university, and is staffed by an expert research faculty. Both undergraduate and graduate university students conduct research as well. This work is instrumental to advancing the goals of the Disabilities Leadership Council, as it trains the next generation of doctors and scientists in the field of developmental disabilities. Hopefully, through the DDDC and other similar institutions, new scientific solutions can be found to help those with ASD and other similar disabilities.

More information on the Douglass Developmental Disabilities Center, including how to take advantage of their services and how to get involved in opportunities for work and research there, is available on their website at http://dddc.rutgers.edu.

Issues Facing the Special Needs Community: Transitional Planning

Today, we're posting the first in a series of articles highlighting important special-needs issues. These articles also include information about important special-needs professionals.

Professional
Stuart Flaum is the chairman and founder of the Disabilities Leadership Council. While the Council is a fairly new organization, Chairman Flaum has been active in the special-needs world for a number of years. In addition to his work for the Council, he is the co-chair of Autism Speaks' Manhattan Walk, serves on the Planning and Advisory Board of the Glenholme School (a school for children with developmental disabilities in Connecticut), and coaches an elite Special Olympics snowshoe team. Stuart is also active in a number of organizations, including the National Autism Association, NAMI, DOROT, and AHRC. Stuart is also instrumental in helping families plan for their financial futures. He is the founder of the Special Needs Family Planning Group at AXA Advisors, LLC, a group centered on specialized financial planning for individuals with disabilities and their families.

Issues: Transitional Planning
One of the big issues facing individuals with developmental disabilities is the challenges posed by the transition from childhood and the school environment into adulthood. Parents and social workers must aim for the full inclusion of people with special needs into the community; gone are the days when, after high school graduation, people with ASD and other developmental disabilities disappeared into group homes or were otherwise institutionalized. The inclusion of people with developmental disabilities in society is a main goal of the Disabilities Leadership Council, and the concept is also supported by the Special Needs Family Planning Group at AXA Advisors. Individuals and families must make long-term financial plans well into adulthood to ensure that an individual with special needs are well supported for as long as necessary.

The Autism Society of America has prepared information concerning the transition into adult life which covers a number of issues underlying this transition. This document is available at http://www.autism-society.org/site/DocServer/Transition-Preparing_for_a_Lifetime.pdf?docID=10622.

Please comment with your reaction to this document, or with suggestions for future topics and people for discussion.

How to Join the Council

The Disabilities Leadership Council is now accepting new members! To join, send an email to disabilitiesleadershipcouncil@gmail.com. Please indicate in your response your name, phone number, email address, and whether you are a caregiver, a professional, or both. We thank everyone in advance for their support.

Strokes of Genius a Huge Success

On May 21, The Disabilities Leadership Council hosted Strokes of Genius in New York City. Strokes of Genius is an art show designed to exhibit the talents and work of autistic savants. The event was very successful; in the words of one of the event hosts, Dr. Rosa Martinez (above right), “Strokes of Genius was a huge success. I enjoyed meeting some of the artists and their families. Conversations were fascinating and the art was amazing!” The exhibition featured the work of 14 artists. The work ranged from drawings to oil paintings to sculpture. There was also a documentary film, “Sidecars,” starring artist Justin Canha and his student Lyndsley Wilkerson. The most featured artists were Dr. Temple Grandin, Stephen Wiltshire, and Ping Lian Yeak. Dr. Grandin is a professor of animal science at Colorado State University in addition to being an artist and has been featured on 20/20, Larry King Live, and in the New York Times. Mr. Wiltshire has done drawings of many major cities from the air and has his own gallery in London. Lastly, 15-year-old Ping Lian Yeak has generated a great deal of interest globally. He has been featured in exhibitions around the world and will preside over the opening of his own gallery in Malaysia this summer.

At the event, Strokes of Genius co-host and Disabilities Leadership Council Chairman Stuart Flaum (above left) presented Dr. Martinez with an award to recognize her continuing efforts to promote the artwork of autistic savants. Dr. Martinez organizes and curates art exhibitions across the United States to feature these artists, and has worked in the field of autism for 26 years. In the words of Chairman Flaum, “I can think of no one who has done more than Dr. Martinez to expand the possibilities for these artists. It was an absolute delight to host this wonderful exhibition and see the artwork, which was incredible. I hope that every event hosted by the Disabilities Leadership Council in the future is as successful as Strokes of Genius.” Of course, some of this success is due to the tireless work of Flaum, who works with many organizations to promote autism awareness. Not only does he chair the Council, but he also works as a financial strategist at the Special Needs Family Planning Group at AXA Advisors, LLC and is on the Planning and Advisory Board of the Devereux Glenholme School, a special needs boarding school in Washington, CT.

The Disabilities Leadership Council is continuing to work with Dr. Martinez to host other events to showcase the talents of autistic savant artists. More information on Strokes of Genius, including photos of the event and of some of the artwork, can be found at her website, http://www.rcmautismnotebook.com/. Information on future events hosted by the Disabilities Leadership Council will be posted here, on our blog, so keep logging in!

Our Mission Statement

Our Mission

The mission of the Disabilities Leadership Council is to find solutions for individuals with special needs.

To fulfill this mission, the Disabilities Leadership Council seeks to create an association for professionals to share contemporary ideas to meet the current and future needs of individuals with disabilities and their families. Through discussion between experts in many different fields, ranging from government to social and educational services to the financial sector, we hope comprehensive solutions will emerge to the problems faced by individuals with special needs and their families in today’s world.

Our Philosophy

In order to find the most effective solutions to the issues faced by individuals with disabilities and their families, the Disabilities Leadership Council looks to use all approaches and ideas from people of a variety of educational and cultural backgrounds. We look to use both traditional and non-traditional thought processes in developing full-fledged answers, refusing to restrict ourselves to a single set of ideas. The Council also stresses the need for long-term planning for an individual with special needs as opposed to crisis management. This preparation includes financial planning, vocational training, residential arrangements, and provision for long-term healthcare.

Most importantly, the Disabilities Leadership Council firmly believes in personal and family responsibility for an individual with special needs. These individuals and their families must plan ahead to meet their needs and acquire self-reliance, and cannot be exclusively dependent on government assistance.