Candlelight Speech by Khalid Rehman

Khalid Rehman
Chair, Advocacy Committee, NAA NY Metro Chapter
A practicing physician and a grandfather of boy with Autism

Thank you for joining us this evening at the first candle lighting ceremony to celebrate the Autism Awareness Month at the steps of the city hall. As you all know, April is designated as the Autism Awareness month all over the world and April 2nd as the International Autism Awareness Day.

I also want to thank the advocacy committee members, particularly Dara Berger, Kim Mack Rosenberg and Lisa Rudley for making this event possible.

I also want to extend appreciation and gratitude to my Councilman Daniel Garodnick and his office staff for helping us organizes the First Annual Autism Awareness event at the City hall.

Autism is an epidemic and the number of children affected by it is ever increasing. Some years ago, the CDC estimated that 1:150 individuals or about 2.3 million individuals are affected by Autism. We are sure that the number has now increased since that estimate is at least 5 years old.

Autism is a major health care problem that has serious social, health related, financial and emotional impact it has on the lives of millions of such families. Yet not many people know about this.

Let me use HIV-AIDS as an example. Almost everyone has heard about HIV AIDS. Almost every day some prominent elected official, current and past United States Presidents, Senators, actors and celebrities tell us about HIV AIDS and its deadly impact on our society. The CDC estimated that there were 468,000 individuals with HIV AIDS in the USA in 2007.

We all know that HIV AIDs is a serious public health issue. On Monday 20th April 2009, The New York Times devoted its Editorial space to HIV AIDS and called it “A Real Problem”.

Now let me ask you! How many elected officials and celebrities that you know are talking about Autism? How many people are raising the concerns about an epidemic that affects 2.3 million people? That is 5 times as many as HIV AIDS.? Not many. That is why we are having this event. We need to increase the awareness about this epidemic that is threatening one in every 150 children and 1 in every 90 young boys in the world.

We are loosing a whole generation of children to the Autism disorders. That is 2.3 million children and counting. That is the REAL problem and we need to increase the awareness about that.

The society at large, our elected officials and the educators must recognize that this is a real epidemic and must act together to combat it. We must increase funding for research. We must provide resources for early education and therapies and provide adequate health insurance to care for those affected.

We must clean up the environment. We must remove the toxic substances from our soil, air, food, drugs and vaccines. We must eliminate discrimination towards the disabled. We must eliminate abuse in the residential facilities.

Until a cure is found, we must protect our affected children from harm, offer them the best individualized education and behavioral therapies in order to optimize their best potential. The Advocacy Committee in particular and the New York Metro Chapter of the National Autism Association in general are dedicated and committed to be the voice of these children and speak on their behalf till they are able to speak for themselves.

Dr. Mark Freilich: Finding the Right Therapeutic Program for Your Child

Dr. Mark Freilich spoke about how the basis for many autistic presentations are sensory processing problems and regulation problems. Although diagnosis are helpful for getting support services for your child, by having someone look at the child in different settings, often a more specific and successful program of intervention can be implemented. He explained that seeing the child in natural settings (school and home etc.) allows the developmental pediatrician to get a picture of the whole child. With this type of evaluation the developmental pediatrician can look at areas of strength as well as weakness, tell if there is a good or bad fit (between parent/child and teacher/child), and put together a treatment plan that will allow the child to get better over time. Prioritizing short and long term goals and developing what your child is capable of were also things he liked to address in his evaluations. Helping kids recover from their symptoms--rather than finding a "cure" was one topic that came up. And recognizing that the child is a moving target and often the developmental diagnosis will change over time and treatment plans also need to be adjusted was another topic. Dr. Freilich brought an ABA therapist, Tia Marie Smith, and a floortime therapist, Beth Kastner, to explain the difference between ABA and floortime approach.

Mark Freilich, MD
Developmental Pediatrician
drmark@totalkidsny.com
www.totalkidsny.com

Louise Levy: Hearing and Auditory Processing

On Wednesday, March 25, 2009, Louise Levy, a prominent New York audiologist, presented to our group. Louise educated the group about the difference between hearing and auditory processing, as well as the interplay between the two - if you don't hear well, you cannot process information effectively and efficiently; however, just because you hear well, you may not necessarily process information appropriately. Louise also stressed the importance of quick follow up with an ENT for any special needs child presenting with fluid in his or her ears because of lost time if the child is not hearing well - the child is at risk for losing the benefits of speech therapy and other interventions if the child is not hearing (and, consequently, not processing) well. Moreover, Louise discussed the interplay between food allergies/sensitivities - especially dair - and ear issues and noted that, for many children, removal of dairy-containing products can have a very positive impact on a child's ear health.

Louise told parents that a child needs to be developmentally at about age five for formal auditory processing testing but that it is possible, using other evaluation methods, to identify potential auditory processing issues in children for whom formalized testing is not appropriate. Louise then discussed a number of different methods for addressing auditory processing disorders such as Earobics (a computer-based program), listening programs, and devices such as the Phonic Ear, used in classrooms to improve auditory attention by elevating the teacher’s voice above the classroom noise.

Not only did Louise share with us important information about diagnosing and treating hearing and processing issues in children on the autism spectrum, she also gave us many take home hints of games, like Simon Says, that any parent can use to improve processing in their child and in which all family members can participate (and have fun!). Here is a link to her presentation: Hearing and Auditory Processing: It's Importance and Impact on Your Child

Louise Levy, Audiologist
863 Park Avenue
New York, NY 10075
hearlevy@AOL.com
(212) 472-1350

Autism Epidemic Rally in Albany - March 24, 2009

Assemblyman Mark Shroeder addressing the rally

For the first time, autism related organizations throughout NY State came together to rally for the rights of families affected by ASD. On the steps of the Capital Building, with posters raised high and the press covering the event, the coalition put forth its demands:

(1) Oppose budget cuts for special education and early intervention; (2) Support vaccine rights’ legislation including philosophical exemption, religious exemption without examination, and medical exemption; and (3) Support health insurance reform. Speaking for the coalition were Louis Conti, John Gilmore, and Lisa Rudley. Assemblymen Harvey Weisenberg, and Mark Schroeder, Chairman of the Assembly Subcommittee on Autism addressed the rally and declared their full support for the coalition’s demands.

After the rally, the participants met their respective legislators. NAA NY Metro Chapter contingent met with Assemblyman Brian Kavanagh and with Senator Thomas Duane, Chairman of the Senate Health Committee and held an indepth meeting with Ms. Denise Soffel, Executive Director of the Senate Health Committee.

This event was endorsed by NAA New York Metro, Autism Action Network, Autism United Autism One, Autism Society of America-Albany Chapter, Autism Society of America-Bronx Chapter, Autism Society of America-Nassau/Suffolk Chapter, Autism United-Westchester, Generation Rescue, SAFEMINDS, Schafer Autism Report, Talk About Curing Autism, and Unlocking Autism.

For more on the rally, see Fox23 News report and interviews with New York Metro members in The Legislative Gazzette.

Assemblyman Brian Kavanagh with New York Metro members

Khalid Rehman is interviewed by The Legislative Gazette

See photo album for more pictures.

TAX DEDUCTIONS for Families with Special Needs Children

Kim Mack Rosenberg and Mark L. Berger, CPA

It is Tax Time! Are there tax deductions that are particularly helpful to families with special needs children? To answer these and many other questions, NAA-New York Metro Chapter invited Mark L. Berger, CPA, and Kim Mack Rosenberg to its Parent Network Exchange Meeting on Tuesday, March 10, 2009. We had a standing-room only crowd for this timely topic.

Mark Berger is the President of M.L. Berger & Company, Ltd, is a CPA with 20 years of experience. Kim Mack Rosenberg is an Officer of the Board and Treasurer of the NAA-New York Metro Chapter, and a savvy mother of a special needs child, who has done extensive research in this area and has many years of experience in developing a system to organize and document one’s deductions. Mark outlined the tax laws that pertain to individuals with special needs and highlighted the many (sometimes unexpected!) expenses that may qualify as medical tax deductions. Kim translated those principles into the techniques of organizing, documenting and substantiating an effective case for tax deductions.

Mark and Kim provided those who joined us with a number of useful handouts. Mark prepared a list of potential deductions that are relevant to special needs families and Kim provided a write up of her organizational strategies. Mark also provided copies of IRS Publication 502 – a great resource on medical deductions. Kim shared the basic form she uses to track her deductions as well as an annotated copy of an insurance explanation of benefits (“EOB”), showing where to find amounts that insurance might not have paid that may be deductible.

Mark explained that only medical expenses that exceed 7.5% of a family’s adjusted gross income are potentially deductible. The IRS has defined medical expenses in its Publication 502. Many parents were excited to hear that, besides the straightforward medical expenses like doctor’s visits, items like therapeutic schools, therapies, biomedical treatments, transportation related to medical expenses, and a number of other things may be deductible with appropriate substantiating information. Mark discussed with parents some of the limits on these deductions as well as what you need to show that your deductions are appropriate. Parents learned that a number of surprising things might be eligible as medical expenses.

Hands shot up in the audience with many questions about all kinds of expenses parents incur for their special needs children! And what’s the deal with flex spending and deductions? Mark elaborated on Flex Accounts – which, he explained, for some families may be better than the 7.5% deduction. He also emphasized that one has to be careful not to take a second deduction, i.e. any expense credited to a Flex Account cannot be itemized as a tax deduction. Mark also discussed that married couples discuss with their own tax professional whether “Married Filing Separately” status made sense for them – he explained that for some families, this worked out better.

After Mark discussed potential deductions, Kim offered a prescription for “how to prepare for your tax return” and tackle the mounds of documents and receipts that parents amass. The first rule of business: Get a record-keeping system that works for you. Next, file regularly. It doesn’t matter whether you use Quicken or a similar computer program or plastic files from the Container Store – file regularly. And then, back it up, be it on a hard drive, a flash drive, or in cyberspace.

Kim displayed her filing system – a pair of colorful plastic files that she has used for years (they are nice and sturdy) – but she reminded us that, while this worked for her, it was just an idea – we need to experiment to find what is right for each of us, otherwise, you won’t use it. Her large file is compartmentalized for Flex Spending to be submitted, Flex pending, Flex reimbursed, Insurance to submit, pending and paid as well as categories for medical deductions relevant to her family. The small file is for ‘small’ receipts like tolls, cab, groceries, prescriptions, etc. She explained how she processes flex spending and insurance claims -- as each file is processed, the paperwork moves from one compartment to the next, until the item is closed. She can then use these organized documents to make tax time more efficient for herself and her accountant.
She also discussed ways to track mileage, public transportation and taxis, and even ways to figure out whether the deduction for special foods – if available to you – is worth it for your family, since it is a lot of work figuring out the deductible amounts.
Hands shot up again!
Can I store receipts in pdf format?
Yes.
I have a metro card dedicated to medical expenses and I can access my travel log on-line.
Great tip!
I try to use my flex spending for things I am sure insurance won’t cover.
Another great tip!
And there were more questions, tips, and ideas that the audience shared.
Long after the lecture was over, people lingered to exchange ideas, share experiences, trade business cards, and be part of an extended family.
A final note – everyone’s situation is unique and Mark and Kim encouraged us to discuss our specific issues with our tax advisers.
Thank you Kim!
Thank you Mark!

Christina Peck from Blessed with Autism

Tia Marie Smith, NAA-NYMetro VP, with Christina Peck

On Wednesday, March 4, 2009, the NAA-NY Metro Chapter welcomed Christina Peck, CPC. Christina shared with us the way in which her professional life and her family’s needs converged and eventually resulted in her educating other parents and therapeutic and medical care providers on how to navigate the insurance maze. Christina has a Certification in Professional Coding and extensive experience in medical sales. She also has owned a medical billing company. She is the mother of three children, two of whom were diagnosed on the autism spectrum. She first began using her professional background to help her own children get the services they needed covered by insurance and eventually this resulted in her founding Blessed with Autism (www.blessedwithautism.com) to help other families obtain the insurance benefits to which they are entitled under their plans.. Christina has found many innovative ways to help her own children and many others receive insurance reimbursement for such speech therapy, ABA, Floortime, RDI, occupational therapy, evaluations, biomedical treatments, listening programs, as well as some therapy tools, medical devices, and nutritional supplements.

Christina shared many tips with the large crowd and answered many questions. For example, we learned that parents should make a list of all their child’s diagnoses and conditions and make sure your doctors or other providers have documented these conditions. Then make a list of therapies and other services you receive or would like receive. Christina provided the CPT (procedure) codes for many common services for children on the spectrum and these codes are also in her book (available on her website). She suggested calling the insurance company and running down the CPT codes along with your child’s conditions (along with the ICD-9 (diagnosis) codes if you have them from your doctors/therapists) to find “approved duos” – which diagnoses are covered or approved for which CPT codes. Christina also suggested getting a doctor’s letter to document a child’s need for various interventions. She shared important questions to ask your insurer to make sure that you know the full extent of your coverage and ways to make your limits work better for you. While each plan is different, many of her tips had universal applicability. Not every insurer will cover everything a family may want but with Christina’s tips and techniques, parents now have the tools to make sure they can maximize their benefits.


This lively session provided parents with a huge amount of practical advice to empower us to fight for what our children need and deserve!

Pamela's Gluten Free Cookies

A special thanks to Pamela's who donated their delicious gluten free cookies for our group to taste. The Organic Peanut Butter Chocolate Chip Cookies, made with 81% organic ingredients, were my personal favorite. The chocolate lovers among us preferred the Organic Dark Chocolate Chunk Cookies, made with 89% organic ingredients. All of us agreed they were yummy and satisfying and were happy that Pamela's has created an organic line of cookies. They come in boxes or in single serving 2 packs. You can find them on amazon.com or at your local health food store. If you don't find the organic one's locally, ask the store owner if they can carry the organic line, which is healthier for everyone.