Westchester Recap: Special Needs Financial Planning

On Tuesday, May 3, 2011, the Westchester Branch of NAA NY Metro hosted an event centered on a critically important but difficult to face subject - financial planning for your special needs family member. As the numbers of children with autism have increased, so too will the number of adults with autism who need specialized financial arrangements to preserve benefits to which they are entitled but also to allow them to live full and meaningful lives. NAA NY Metro brought together a panel of professionals: NAA NY Metro board member Stuart Flaum, who specializes in special needs family planning with AXA Advisors, spoke about insurance issues. Sheryl Frishman, of Counsel to the law firm of Littman Krooks LLP, spoke about legal issues and trusts. Michael Sanders, President of Clark Dodge Asset Management, LLC, spoke about investments and presented a case study of a special needs family.

Together, this dynamic trio presented families with invaluable information concerning planning for children with special needs as they become adults with special needs. None of us likes to think about these issues - it forces parents to face tough questions, not only their own mortality but also the issue of whether or to what extent their child with special needs will be able to function independently or at what level. As the panel discussed, parents need to look at many issues and are wise to seek professional counsel for this very complicated area of estate and life planning. Because adults with special needs may be eligible for certain governmental benefits, parents need to know that their financial planning efforts may negatively impact their child's eligibility for services he or she very much needs if not correctly planned. Parents need to understand the roles of insurance, investments, and the various trust options that parents might consider in providing for their child as he or she becomes an adult. Moreover, parents need to plan and take action to establish themselves as their adult child's guardian before the child becomes emancipated at age 18. Many parents may not realize that they cannot simply continue to make decisions for their child after age 18, even if the child is unable to do so. Rather, the parent must be legally appointed the adult child's guardian. Failure to formalize the guardian relationship can lead to many difficulties. Moreover, parents need to be aware that their school districts are required to begin planning for transition from educational services to adult services years before a child turns 18. Westchester ARC has many valuable resources on transition planning on their website - simply search "transition" on their site and read up on your child's rights and the district's obligations - many parents are unaware of transition planning, which can be a valuable tool as your child grows up.

Many thanks to our speakers for sharing their wisdom with us concerning this important but very emotional and difficult subject.

Dr. Sidney Baker’s Treatment Options Under the Autoimmune Umbrella

Living the difficult reality of autoimmune diseases becomes even more daunting in face of the barrage of information about their causes and treatments. But at a groundbreaking presentation for NAA NY Metro Chapter in collaboration with Beth Israel Medical Center’s Division of Developmental Pediatrics on April 7, 2011, Dr. Sidney Baker provided a unique perspective, effective treatment options, and hope for those struggling with these diseases.

“Until proven otherwise – all chronic illness is autoimmune,” Dr. Baker said and explained that autoimmune diseases share common roots of problems in oxidative stress, detoxification, and inflammation. Connecting these commonalities in autism, Alzheimer’s, and Parkinson’s is the challenge Dr. Baker is facing every day. “There’s not much light difference between these shades,” he said.

Citing several stories of patients with chronic illness who responded well to his treatment options, Dr. Baker argued for “an approach that focuses on each person as an individual.”
Dr. Baker spoke of a woman he treated for many years. As she grew older, she suffered from dementia and began to wander from home. Dr. Baker explained that nothing seemed to help her, including prescription drugs, until he happened on a recommendation of using a combination of the herb Valerian and Chamomile tea. To his surprise, these natural treatments helped and with their regular use the woman’s wandering stopped. The moral of the story, Dr. Baker said was simple – subtle therapies work!

Dr. Baker shared another story of a 15.5 months old child who had stopped growing, an emergency situation for a toddler. With the right combination of treatments, including, among other things, specific dosages of Trichuris Suis Ova (TSO), and coenzymes and probiotics, the child’s autism symptoms disappeared and he is now healthy and growing.

Cases like these and over four decades of experience led Dr. Baker to form a paradigm that asks two basic questions: 1. Does this person have a special unmet need to get something beneficial? 2. Does this person have a special unmet need to avoid or get rid of something allergic or toxic? Finding answers to these questions is crucial in finding effective treatments.
“Nothing is as hasty as a diagnosis,” Dr. Baker said because it can distract you off of the path to recovery and cure.

Sharing some of his experience from medical school, Dr. Baker recalled that in a case of a child with developmental problems, one of his teachers said, “don’t look for answers.” Someone from the audience asked why a teacher would instruct students not to look for answers. Dr. Baker responded that the teacher wanted to dissuade the future doctors from giving parents “false hope.” He added that experience has taught him that “there is no such thing as false hope.”

Dr. Baker has authored several books and is the Associate Editor of the Journal of Integrative Medicine, and has a private practice in Sag Harbor, NY, focusing on complex chronic illness. Most recently, his research interests include the development of a patented coding system for medical narrative that forms the basis for Autism360.org, a website funded by The Moody’s Foundation providing interchange between individual and collective medical experience and “letting the data talk.”

Reiki with Hilary Mc Cann

Thursday, May 12th
6:30-8:30pm
408 East 79th Street, New York

Reiki is a Japanese healing technique that can be used to relax, reduce stress, and ease pain associated with chronic illness. It also promotes healing. In recent years, Reiki has moved into the mainstream use of alternative medicine alongside acupressure, acupuncture and Tai Chi. Reiki is used in many hospitals nationwide in their complimentary care/integrative care departments as well as being used to treat autism spectrum disorders. Reiki can help alleviate some of the symptoms associated with Autism and it may produce an overall calming effect without the use of drugs. It also does not interfere with other conventional and alternative treatments. Reiki can address sleep troubles, stomach pains, headaches, anxieties and fears.

Reiki is administered by laying your hands on certian points of the body and is based on the idea that an unseen "life force energy" flows through us and is what causes us to be alive. It is a simple, natural and safe method of spiritual healing and self-improvement. Reiki can be used to treat specific illness or for general wellness. This powerful energy healing method can be used on yourself or your child.

There is no fee and no registration required.

Please circulate this invitation to family, friends, and colleagues

Please visit our website for more information www.naanyc.org

NAA NY Metro Adovocates for Philosophical Exemption

The NAA NY Metro Chapter’s representative along with other autism advocates and activist had a private meeting with N.Y. State Assemblyman Richard Gottfried, who chairs the Assembly Health Committee. The meeting was held on 4/17/2011 at the district office of the assemblyman. Those joining in this meeting included John Gilmore, Exec. Director of Autism Action Network, Rita Palma of My Kids My Choice, Mary Holland Esq and Robert Krakow Esq of EBCALA. Lisa Rudley and Khalid Rehman represented the NY Metro Chapter.

Assemblyman Gottfried is very sympathetic to our cause. He currently has sponsored two bills, A00592 and A00593. If enacted, the boll A00592 will “provide protections to parents who decline to have their children immunized on the basis of religious beliefs; will allow a parent to submit an affidavit stating that the parent, parents or guardian hold genuine and sincere religious beliefs”. The bill A00593 will “extend the protections of the medical exemption from mandatory immunizations for students to ensure deference to the professional assessments of physicians and nurse practitioners in the care of their individual patients”.

The group asked the assemblyman to go a step further and support an alternative bill that will be broad based and provide exemption based on secular grounds. The data from CDC shows that in 2009, the rate of vaccination in the States that offer religious and philosophical exemption was not lower than other states or the national average. In fact and contrary to what will seem obvious, the rate of vaccination in the States with religious and philosophical exemption was higher than many States without such laws. This was explained by the fact that when parents are allowed to seek such exemptions, they choose to have their children vaccinated against some serious illnesses, whereas without such exemptions, such parents avoid all types of vaccinations. This data was shared with the assemblyman.

The legal issues of personal choice and inability of families to seek remedies and damages due to defective vaccines were discussed by Mary Holland and Robert Krakow. Dr. Khalid Rehman spoke about lack of informed consent and the impact of mandated vaccines on the immune system of vulnerable children. Lisa Rudley and Rita Palma emphasized that we must be allowed to have choices and that mandatory vaccinations alienate such families, force them no avoid vaccinations. This “all or none” attitude is contrary to good public health policy, a goal that the assembly health committee strives to achieve.

Tips for Air Travel with Your ASD Child

A friend asked for some tips on air travel with his ASD child. One of our board members, who travels far and wide with her ASD son, sent this and I thought it was great and really worth sharing!!

Jet Blue allows you to get a bulkhead, extra legroom seat for about $35 per person each way - worth it! Other airlines may have this service as well or, if you let them know your child is disabled, may assign such a seat to you. Bulkhead might be best if you are at all concerned about kicking the seat in front or snapping the tray table up and down (a favorite of my son's for awhile). Also you can board first or last, whatever suits you best (the extra leg room seating entitles you to priority boarding). If you have lots of carry-ons I would say get on first, to secure space but if not, your child might feel better getting on later. I would definitely call the airline in advance and also talk to them at the gate if you have concerns.

If you think your child be agitated, talk to your MD about possible sedatives (and try them out before the trip -- you know how some sedatives have the opposite effect on some people - the last thing you want is him bouncing off the wall, right?) Portable DVD/iPad/iPod or the like are important but, keep in mind that until a cruising altitude is reached they have to be off so if your child is using it before take off, it will have to go off until they announce. If that transition will be hard, then consider not giving it to him or her until you are in the air. Jet Blue also has seat-back TV (incl. Nickolodeon, cartoon network and the like!) which helps (electronics also have to go off during descent and landing).

Might want to check the TSA re screening etc. Some airports have the nasty new screening machines with the radiation concern. I had us screened by hand when we flew back a few weeks ago because we were put on the line for those machines. They had to separate us b/c I needed a female screener. My son always in my sightline but they screened me first. When they screened him I was very close though not in the screening space (which was roped off). You could also inquire about private screening if you are concerned about your child not cooperating. With regard to the regular x-ray - they want children to go thru alone, so you will need to decide if you going before or after works best or talk to TSA at the airport about another way to do it if you are concerned.

I think advance planning is the key for everyone. Does your child do well with social stories? Those might help prepare him or her too because lots of things he or she has never experienced before will happen! Also if concerned about ears popping - take gum if he chews it (my son won't and always has ear issues flying).

NAA - NY Metro Rings The NASDAQ Opening Bell

On April 18, 2011, NAA NY Metro had the great honor of ringing the opening bell at the NASDAQ Exchange during Autism Awareness Month. A number of NAA Board Members, friends and family gathered for the ceremony. In attendance were: Kim Mack Rosenberg and Henry Rosenberg; Peggy, Rob and Daniel Becker; Stuart and Cameron Flaum; Khalid Rehman; Homeira Kalim; Sujata Setya, Raj Dhanda and Debbie Pieri; Kathleen Reily; and Lisa, Max, Derek, and Lexi Rudley. The broadcast was carried by many media, including CNBC, CNBC India, CNBC.com, Itsaboutfinance.com, Business News Network (Canada), NDTV (New Delhi), Bloomberg, FOX Business, & KTVU (a FOX Affiliate). We also were broadcast on the 7-story jumbotron in Times Square!

NASDAQ made us feel welcome from the minute we walked in the door. Our logo was everywhere, on all the screens and even projected spinning on the lobby floor! In the Times Square studio there were beverages for all as we did a practice run through the ceremony. When the ceremony began at about 9:15, host Jay Heller spoke about the NAA NY Metro chapter and introduced Kim and Peggy. Kim spoke for a few minutes on autism awareness, difficult issues such as wandering and adult services facing families caring for a loved one with autism, and the work of NAA NY Metro and how we hope to reach families in need. then it was time to push the button to ring the bell and open the market. Everyone gathered onstage for the bell ringing, amid much clapping, waving and cheering. We then went outside for a photoshoot on Times Square with our images projected on the jumbotron - a real kick for the kids and adults alike.

You can watch the ceremony here, just look for the April 18, 2011 opening ceremony, and read more about it here.

A big thank you to all who made this happen - it was truly a special day for NAA NY Metro!

Photos are copyright 2011, The NASDAQ OMX Group, Inc.

Westchester: Neurofeedback, A Non-Invasive Brain Training Intervention

On Monday, April 11, 2011, Drs. Mary Jo Sabo and Mala Datta presented "The Neurofeedback Approach to Train the Brain Non-Invasively in ASD and Other Disabilities." This well-attended program was very informative and we present below the materials shared by Mary Jo and Mala, which provide a wealth of information for those interested in learning more about the benefits of neurofeedback. Mary Jo and Mala gave the audience an overview of the history of neurofeedback and the benefits they have been observing in children with autism, ADHD and other developmental challenges. A number of parents in the audience have already been using neurofeedback with positive results in their children.

Drs Sabo and Datta Neurofeedback Presentation 2011
Sabo and Datta Neurofeedback and Autism 2011
Autism and Case Studies Research-1