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.