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

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

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.

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.