Wednesday, February 25, 2009

Special Needs Financial Family Planning

On February 24, 2009, NAA-NY Metro was extraordinarily fortunate to have four experts in the field of special needs financial planning present valuable information to our group. Stuart Flaum, Anthony Marchiagiano, and Travis Dauchy -- financial strategists with AXA Advisors and its Special Needs Family Planning Group -- and Wendy Sheinberg, a partner in the law firm Davidow, Davidow, Siegel & Stern, LLP, presented to the group on the very specialized issues concerning future planning for our special needs children. Stuart is an active member of our group (and many other organizations benefiting children with ASD and other special needs) and pulled together this wonderful team of professionals, who not only were incredibly knowledgeable, but also truly caring about children with special needs and their families.

The point that really struck me -- like a sledgehammer -- is that hope for a child’s ability to live independently cannot cloud a parent’s judgment in financial planning for other possible eventualities. We cannot let our hope preclude us from recognizing that our children may need some protections and assistance in their adult lives, particularly when we no longer are here. As parents, grandparents, and caregivers of children with ASD who are fighting so hard, using many different treatment modalities, to improve our children’s health and maximize their potential, we are driven by hope that our children will be able to lead the most independent and fulfilling lives possible. I truly believe with all these efforts many of our children will achieve great independence. However, that is not a reason to avoid wise financial planning. If a parent ignores these financial issues -- hoping that the necessity for special needs family planning will “go away” -- in the end, the child’s well-being could be seriously compromised. Poor financial planning and failure to establish the proper trust vehicles can significantly reduce the funds available to meet a child’s needs and may also result in loss of eligibility for critical governmental programs. The speakers emphasized the need to maintain Medicaid and SSI eligibility, not only for the financial support (which many will need) but also because eligibility in these programs often is a requirement for participation in many community based programs for adults with special needs.

I learned that one size definitely does not fit all in special needs financial planning. There are different types of special needs trusts, depending, for example, on how the trust is funded. Also, there are different ways to structure wills and trusts, some of which offer flexibility, particularly while parents are still alive, to adjust for changing circumstances. In setting up a trust and other means to provide for a family member with special needs, there are specific requirements that must be met as well as pitfalls to avoid. Professional help is advisable to ensure that your plans will properly protect your child. Moreover, it is better to begin planning sooner rather than later. If we wait to plan until a child is older (and the parents too!), we may end up scrambling at a time of crisis to put protections in place and not make the most appropriate or well thought through decisions.

Ms. Sheinberg also spoke about guardianship under New York law. Depending on the circumstances, it may be wise to have a guardian in place so that, when a child turns 18, the guardian is ready. Guardianship of an adult person with special needs can be critical, especially in areas such as medical care, where privacy laws might otherwise prevent the parent or caregiver from having access to important information to allow them to help the person with special needs make appropriate medical decisions. Guardianship also can help prevent a person from being taken advantage of financially by unscrupulous people. Without a guardianship in place, unwinding such transactions becomes difficult, if not impossible.

The speakers also emphasized getting other family members involved in or aware of the future planning for a special needs child so that they can learn the best ways to provide financial assistance and/or gifts to the child. Moreover, it is important to find the right trustees for your special needs trust and it is probably wise to have two trustees, for a built in system of checks and balances.

The AXA team also provided each of us with a “Family Love Letter” -- an easy-to-use format to provide critical background information about your family and your child. This document puts in one place information about finances, medical care, and other key information. Further, Ms. Sheinberg encouraged parents to create a “Letter of Intent” -- what she described as an owner’s manual for your child. Use the letter (or an audio or video recording) to educate people about your child’s likes and dislikes; important people, places or things in your child’s life; areas of interest; special dietary and medical needs; your child’s areas of excellence and areas where they need help -- all the information that would enable someone to provide for your child socially and emotionally, not just financially, if the need to step into the role of caregiver should arise. Make sure those who need the information contained in these tools have copies or know where to find them. Also, update these documents regularly so that they contain the most current information about your child and your family.

Bottom line -- financial planning for your special needs child is not giving up on your hope for your child's independence -- it simply is a smart move, especially in these uncertain financial times!

Finally, many thanks to Stuart and his wife for the wonderful sandwiches and drinks -- they really went above and beyond!


These are resources in the New York area that are recommended by other NAA-NYMetro families. Not every doctor works for every family. One family might love a doctor and another family might not have been helped by the same doctor. These resources are not endorsed by NAA-New York Metro. We cannot guarantee you will like a doctor. The contact information is compiled and updated regularly and are only listed from a parent member of NAA-New York Metro that is happy with their services. Personal recommendations from parents or at a support group are the best way to find a practitioner. NOT all resources will work for every family!! Please consider these as a suggestion for helping you in finding qualified candidates for your child! Feel free to suggest doctors in the comment section.

Kenneth Bock, M.D., FAAFP, FACN, CNS
Rhinebeck, NY 12572
tel: 914-876-7082
fax: 914-876-4615

Comprehensive DAN! Doctor
Marvin Boris, M.D.
Autism Associates of New York
77 Froelich Farm Blvd.
Woodbury, NY 11797
ph: 516-921-3456
fax: 516-364-1844

DAN! Practitioner
Michael Compain
, M.D.
Rhinebeck Health Center
108 Montgomery St.
Rhinebeck, NY 12572
ph: 845-876-7082
fax: 845-876-4615

DAN! Practitioner
Michael W. Elice, M.D.
77 Froelich Farm Blvd
Woodbury, NY 11797
Phone: 516.921.3456
Fax: 516.364.1844

DAN! Practitioner
Stuart H. Freedenfeld
, M.D.
Stockton Family Practice
56 South Main Street, Suites A & B
Stockton, NJ 08559
ph: 609-397-8585
fax: 609-397-9335

DAN! Practitioner
Raphael Kellman, M.D.
860 Fifth Ave.
New York, NY 10021
ph: 646-432-5552

DAN! Practioner
Nancy O'Hara
, M.D.
152 Danbury Rd
Wilton,CT 068497

Comprehensive DAN! DOCTOR, Integrated doctor
Dr. James Neubrander, M.D., F.A.A.E.M. *
15 South Main Street, Suite 6
Edison, NJ 08837
tel: 732-634-3666
fax: 732-634-8008

Comprehensive DAN! Doctor
Lawrence Palevsky, M.D.
Holistic Child Health
220 Fort Salonga Rd., Rte. 25A, Ste. 101
Northport, NY 11768
ph: 631-262-8505
fax: 631-754-2909

DAN! Practitioner
Fred Pescatore, M.D., M.P.H.
369 Lexington Ave.- 19th Floor
New York 10017
Phone: 212 779-2944
FAX: 212 779-2941

Integrated doctor, ALCAT testing, Allergies
Lawrence D. Rosen, M.D.
690 Kinderkamack Rd
Oradell, NJ 07649-1524

Integrative Pediatrician/Green Pediatric Office
Morton M. Teich, MD
Phone: 212-988-1821
Fax: 212-288-9289
930 Park Avenue
New York, NY 10028

DAN! doctor, Yeast/Probiotics, Environmental Allergies


Benjamin Kligler, MD, MPH
Continuum Center for Health and Healing
245 5th Avenue-2nd floor
NY, NY 10016
phone: 646-935-2257

Mark Nesselson, MD
146 W. 95th St.
New York, NY
phone: (212) 662-2230‎
fax: (212) 662-8149

Saturday, February 21, 2009

Spring Cleaning-Mom's Night Out with Geri Brewster and Kathleen Reilly

Geri Brewster, speaker, and Kirstin Boncher
Last Thursday, we held a special night just for the mom's and mom's to be. NAA NY Metro Parent Mentoring Committee members Geri Brewster and Kathleen Reilly from Autism Help at Home spoke to us about natural ways to clean out our bodies for preconception and to prevent illness that may run in our family. They explained some easy and healthy diet habits that can be used to replace unhealthy ones. We were also given an extensive list of toxins to stay away from in our everyday products. I think if is safe to say we all left recharged about our health and ways to keep our family safe.

Autism Associations Meet in Albany To Form Coalition-December 6, 2008

NAA New York Metro chapter participated in a planning meeting to create a state-wide coalition of autism organizations and individuals with the purpose of calling upon State legislators with pressing issues. In attendance were representatives from NAA Metro Chapter, the American Autism Society, Autism Speaks, Autism United, the JCC of Westchester County, and individuals from central and northern New York; and a legislative aid from the Assembly Speaker Mr. Silver, as an observer.

Practical Spirituality workshop with John Mongiovi - January 25, 2009

Seven women gathered this past Sunday to take a workshop on Practical Spirituality. The first thing we learned is that we all had one thing in common, which is either on-going stress or just our share of stressful experiences. John Mongiovi led us through a wonderful journey exploring ancient teachings of healing and stress reduction. He gave us relaxation techniques that are easy enough to incorporate in the busiest person's schedule to help reduce stress. We left the class at the end of the day with a better understanding of how to keep negative thoughts at bay and how to change bad habits over time. This workshop is truly a gem for anyone who wants to focus the mind and relax the body. Thanks again John. For more information on the class:

Dads Night - January 13, 2009

We had our first Dads Night this past Tuesday evening. There were about 20 men who came to the event. The feedback was overwhelmingly positive. Many of the dads have expressed an interest in having us hold the event again, possibly even a few times a year. We are extremely happy that it was such a huge success and we were able to connect a group of men to each other that normally might not meet.

Saturday, February 7, 2009

Holiday Toy Drive Thank You

Thank you to all who donated toys for our first holiday toy drive. We found a home for everyone's gifts with children at the Gramercy School, a program for children with ASD run by YAI. A number of the families of children attending the school face significant financial struggles and your gifts helped to make the holdiay season brighter for them. I cannot tell you how grateful YAI was for your donations and we at NAA are thankful for all of you who, in this difficult economic climate, were able to dig a little deeper to help others.