One in 68 Children has Autism

QSAC's blog – Guest Bloggers » Guest Bloggers

Some considerations when working on improving communication deficit

November 18, 2013 2:21 pm Published by

Children and adults diagnosed with Autism Spectrum Disorder have persistent deficits in social communication and social interaction across multiple contexts as one of the symptoms. This impairment is usually manifested in lack of social-emotional reciprocity, poor integration of verbal and nonverbal communication and difficulties adjusting behavior to suit various social contexts. Delays in communication usually vary in severity ranging from monotone speech about preferred topic to a total absence of verbal communication. Often individuals with ASD do not effectively perform the single most important task of communication and language, and that is expressing their wants and needs (i.e. making requests, exhibiting mands) and, as a result, they have very little control over what happens to them in their daily lives.

Further, multiple researches has shown that communication impairment is correlated with an increased risk of challenging behavior and reduced opportunities for community involvement and therefore it is understandable why a huge amount of intervention research has focused on developing successful procedures for improving communication skills of individuals with ASD.

 In most cases, the traditional developmental model of language represents the basis for teaching communication and language skills, however in this model, the primary unit of communication and language is the word and words, signs, pictures, or symbols are taught without much regard to the circumstances present during instruction. For example, some expressive language is taught as “labels” (“car”, “table”, “spoon”), some as “answers to questions or responses to statements” (“more”, “fine”, “please”, “hello, my name is___ “) and some as “generalized requests” (“eat”, “drink”, and “break”). For children and adults with ASD, the words, signs, or pictures they learn in one circumstance, don’t tend to occur in other circumstances without additional instruction. In many cases, this result in little to no expressive language or communication responses that are useful or important to the person, in other words, the person does not learn how to make specific requests (i.e. “no mands”).

Very often, this also results in problem behaviors. Individuals begin to communicate by screaming, dropping to the floor, hitting, spitting, kicking, biting, etc. and, if these behaviors result in what the individual wants, even intermittently, these same behaviors function as either specific or generalized requests (“problem mands”) and tend to occur again and again…Then, usually a clinician is asked to conduct a functional assessment in order to develop a plan to reduce the frequency of the problem behaviors and replace these behaviors with more appropriate alternatives. Often, these “replacement” behaviors are either a limited array of receptive skills (following directions or completing assigned tasks) or “generalized requests” for attention, escape, or access to categories of preferred items and activities (i.e. eat, drink, play, more, please, etc.)

When the only “replacement” behaviors are receptive skills, we are teaching poor speakers to be better listeners and when the “replacement” behaviors are generalized requests, we are teaching poor speakers to be non-specific speakers.

Neither is adequate…

Ideal practice should include teaching individuals to make specific requests (SPECIFIC MANDS) and expanded array of receptive skills (following directions, completing assigned tasks, waiting, sharing, and accepting no) (GENERALIZED COMPLIANCE).

In other words we should be teaching poor speakers to be effective, specific speakers who have more control over what happens in their daily lives while also teaching them to be good listeners in a wide variety of commonly occurring situations. Under these circumstances we could expect to see that when individuals have more control and power over what happens in their daily lives they tend to exhibit far lower rate of problem behavior.

Nevena Savic, MA

 

Sports Column: December Highlights [Guest Blog]

December 12, 2012 3:15 pm Published by
by Mike Seligson, QSAC client

MLB: David Wright agrees to a 7 year, $138 million extension with the Mets. Bad news for the Yankees, they will be without Alex Rodriguez for 4-6 months.

NFL: The Patriots clinch the AFC East for the fourth straight year, and ten of the last twelve, due to a win in Miami, 23-16.

Rex Ryan and his Jets won 7-6 over the Arizona Cardinals, thanks to a brilliant move of putting in third string quarterback Greg McElroy, who threw the game-winning touchdown, and benching Mark Sanchez.

It was a not so good game for the New York Giants who played the Washington Redskins on Monday Night Football. In RG3’s MNF debut, the Redskins pounded the ball for over 250 rushing yards, though a positive for the New York Giants is they are still a game up on the Washington Redskins.

NBA: Good news for New York Knicks and Brooklyn Nets fans: The 12-4 Knicks are perfect at home and 2nd in the Eastern Conference. The Brooklyn Nets are 11-5, 3rd in the Eastern Conference.

NCAAF: Notre Dame and Alabama will face off in a clash of the #1 and #2 titans, at the end of a whole month of college bowl games.

NCAAB: The Indiana Hoosiers and the Duke Blue Devils are #1 and #2 in the country. Kentucky took a big nose dive and is out of the top 25 for the first time in the John Calipari era.

Autism Insurance Reform in New York [Guest Blog]

November 16, 2012 4:01 pm Published by

by Andrew M. Cohen, Esq.

As most people know by now, autism is a developmental disorder that usually appears within the first three years of life. It affects the brain’s normal development of social and communication skills. While symptoms can vary in severity, children with autism may have difficulty with speech (both verbal and nonverbal), social interaction, making and maintaining eye contact, pretend play, sensory issues, perseverative behaviors, intense tantrums, and/or repetitive body movements. The Centers for Disease Control and Prevention estimate that 1 in 88 children have autism spectrum disorders (ASDs). While there is currently no cure, autism is a treatable condition.

While more and more health care professionals are aware of the signs of autism, a health care professional experienced in the diagnosis and treatment of autism is usually needed to make an actual diagnosis. To date, some private health insurance companies have been covering the testing and diagnosis of ASDs, however, the majority of insurance companies have not offered such benefits.

When dealing with autism and spectrum disorders, early and intensive treatment usually produces substantially greater long term benefits. Applied Behavioral Analysis (ABA), medications, speech therapy, occupational therapy and physical therapy are commonly used as part of a comprehensive treatment plan. ABA programs are usually done early on in the child’s home, under the supervision of a behavioral psychologist. It is a one-on-one approach, which teaches a variety of skills. The goal is to get the child as close to “normal” developmental functioning as possible. Access to ABA―which has been found to be among the most effective treatments for autism spectrum disorders―has been limited because families are forced to struggle with their ability to pay out of pocket for this treatment.

In the past few years, many states have adopted legislation to include health coverage for these disorders and New York is the 29th state to implement such a law. In 2011, Governor Cuomo signed into law a bill (co-sponsored by Long Island’s Senator Charles Fuschillo, Jr.) that advocates for those with autism and ASDs. This new law is being viewed as one of the most comprehensive autism insurance reform measures in the country. Scheduled to take effect on November 1, 2012, this law provides coverage of “medically necessary” autism therapies, such as ABA, with a maximum annual benefit of $45,000 per covered individual. In addition to covering ABA, the new law will also cover behavioral health services, medications, diagnostic services, psychiatric and psychological services, therapeutic care, and assistive technology (as long as the services are medically necessary and prescribed or ordered by a licensed physician or licensed psychologist). Under the new law there is no limit on the number of visits per year, nor is there an age limitation, thereby extending this coverage to children and adults alike. Furthermore, an individual cannot be terminated from health insurance coverage due to the diagnosis of or treatment for ASDs. It should be noted, however, that these services are still subject to deductibles, co-pays and co-insurance, similar to those imposed on other health benefits. It should also be noted that this new law only applies to state regulated insurance plans. Accordingly, companies with self-funded insurance plans are not required to provide coverage under the new regulations. New York’s Medicaid program, which provides invaluable services to the disabled, does not provide coverage for ABA.

Today, the prognosis for people with autism is much more optimistic than it was in the past, when individuals with a cognitive disability were forced into institutional settings. While those with the diagnosis will continue to face challenges throughout their lives, the hope and goal is to have the greatest number of persons afflicted with autism and spectrum disorders remain with their families, and to enable them to live to their fullest potential within their communities. The severity of the disorder and the amount of treatment and therapy a person receives often determine the prognosis for the future. The ability for many families to now seek appropriate therapy as a covered benefit under their health insurance plans will likely be a welcomed economic relief to thousands of families dealing with these issues.


Andrew is the principal of the Law Offices of Andrew M. Cohen located in Manhattan and Garden City, and he is the father of three daughters, one of whom has multiple disabilities and graces the cover of his business brochure. His practice focuses on Trusts & Estates and Elderlaw, with an emphasis on planning for families with a disabled child. Andrew is a charter member of the Academy of Special Needs Planners, a national organization of attorneys who are dedicated to providing high quality legal services to the disabled community and, in May 2010, he was selected by Exceptional Parent magazine to receive its Maxwell J. Schleifer Distinguished Service Award. Andrew was added to the Long Island Board of Directors of Easter Seals New York in February 2011 and he was an advisor to Parents magazine for its March 2011 commentary on special needs planning. Andrew believes that it is crucial for parents of individuals with special needs to make all of the arrangements necessary to protect and provide for each family member, and he is a frequent lecturer on this topic. Visit www.amcohenlaw.com for additional information about Andrew and his practice.

On the Edge [Guest Blog]

September 6, 2012 7:13 pm Published by
by Jeff Stimpson, QSAC Parent
Photo by Design Trust for Public Space

The tiny elephant sits on the edge of our dining room table next to the “3” scrawled in permanent marker. On the hutch sits the pig, the pirate, and the guinea pig next to the scawled “3A6.” The wooden figure that my son Alex swiped from his Saturday rec program, a blind Chinese man that he called “Uncle Rob,” sits on the right side of the entertainment unit next to the “2016” in black numeric stickers I bought at Staples because I thought Alex deserved a gift. To the left sit the plastic lion and lioness, flanked by the tiger, the big elephant, the rhino and the turtle. 

My wife Jill values all this furniture. The dining room table was her mother’s. The hutch and entertainment unit are Danish Modern and belonged to her beloved aunt and uncle, now long gone. 

The stuffed moose and lobster are next to the “310” on one side of our coffee table. One rubber duck and “1168” in stickers sits on the other. The other sides feature the plastic cat, the plastic salamander and another rubber duck. The lamp table, the walls.
“Alex, cut it out!” 

Autism and Destruction seem to go together like Peanut Butter and Chocolate (Googling “autism” and “destruction” nets 2.2 million hits; “chocolate” and “peanut butter” 26.3 million, but you get the idea.) Alex has had his obsessions: black T’s, khakis, videos and YouYube on the iPad. 

Fine, except the other night at dinnertime when he hovered around the table. “Alex, chicken?” 

No. He bumped me aside and tried to position the tiny plastic elephant right where I wanted my stuffing. “Alex, I’m eating!” He doesn’t eat like we do. If we’d been better parents he would eat like we do now, but we weren’t so he doesn’t. 

He doesn’t hesitate to pull out permanent Marks-A-Lot, either, and scrawl the numbers that mean something to just him beside the plastic animals on the edges. On the walls he uses crayons and pencils, which at least will vanish under Goo-Gone. “Lock up the pencils!” Aunt Julie suggests, taking time out of assisting her blind Chinese husband Robert. I picture a padlocked cage like you see at Michael’s where they keep the X-ACTO knives and the airplane glue. 

On the walls Alex has pasted “Sesame Street” stickers and scrawled numbers. On the door of the linen closet he’s pasted a “1” and a “2” and scrawled what looks like two lines of “R’s”. Is it right that I call it “scrawled?” It makes him sound stupid, which I’m coming to see he’s not. Just unknowable. When we get around to scrubbing the stuff off the walls, we will make him help us. That will make us good parents.

Jeff Stimpson lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such as Autism-Asperger’s DigestAutism Spectrum News, the Lostandtired blogThe Autism Society news blog, and An Anthology of Disability Literature (available on Amazon). He can also be found on LinkedIn and on Twitter @Jeffslife.

Divorce and the Special Needs Child [Guest Blog]

August 6, 2012 3:48 pm Published by

by Andrew M. Cohen, Esq.

It is estimated that approximately half of all marriages end in divorce. The statistics are even more daunting when the couple has a child with special needs. The reasons for this are self-evident: parents are often overwhelmed by their circumstance, and/or they neglect their relationship in attempting to meet the needs of their child. Once the marriage has ended, it is important that the parents, their attorneys and their financial advisors have a full understanding of the complex nature of “co-parenting” a special needs child after the divorce has been finalized.
While custodial rights and visitation schedules remain key components to any divorce litigation, for couples that are going their separate ways and have a child or children with special needs, additional care and planning need to be given to other areas as well. For younger children, this means having an agreement pertaining to special education issues, such as how to best handle an IEP (Individualized Education Plan) and/or finance the costs and expenses of education evaluations, advocates or attorneys. For older children, preparing for their transition out of the education realm should include consideration of employment or life skills programs, living arrangements and Guardianship (petitioning a court to permit parents to continue to make legal, financial and/or medical decisions for the child from that child’s eighteenth birthday and beyond). These are all issues that must be figured out in a cogent and thoughtful manner.

For many children with disabilities, reliance on means based government benefits such as Supplemental Security Income (SSI) and Medicaid are crucial for their ongoing care. Divorcing parents and their family law attorneys must be cognizant of the fact that child support – paid as a monthly income payment to the custodial parent – can have a detrimental impact on the child’s ability to continue to receive his or her public benefits. Alternative strategies should be contemplated to preserve these important benefits. Creative negotiations to have a non-custodial parent pay certain bills and/or expenses in lieu of providing child support income can be considered. Another commonly used technique to preserve and protect government benefits are trusts: a First Party (self-settled) Supplemental Needs Trust or a pooled trust to “shelter” the child support income.
As a final matter, formulating a new estate plan after separation is crucial. All families that have a child with a disability require a specialized estate plan to insure proper and adequate protection of their family members’ financial future, but for a single parent, such planning is even more important. A single parent without a Will is subject to the state’s intestacy laws, which typically provides that the child or children receive everything. Furthermore, a Will (or life insurance policy and/or retirement account which pass outside the Will) which is not properly directed to a Supplemental Needs trust for the special child also jeopardizes that individual’s eligibility for benefits and financial security.
Divorce is difficult for any family, but for divorcing parents who need to continue to “co-parent” their child with a disability, it is crucial that they take the appropriate steps and make the necessary accommodations to meet the needs of their fractured family.

Andrew is the principal of the Law Offices of Andrew M. Cohen located in Manhattan and Garden City, and he is the father of three daughters, one of whom has multiple disabilities and graces the cover of his business brochure. His practice focuses on Trusts & Estates and Elderlaw, with an emphasis on planning for families with a disabled child. Andrew is a charter member of the Academy of Special Needs Planners, a national organization of attorneys who are dedicated to providing high quality legal services to the disabled community and, in May 2010, he was selected by Exceptional Parent magazine to receive its Maxwell J. Schleifer Distinguished Service Award. Andrew was added to the Long Island Board of Directors of Easter Seals New York in February 2011 and he was an advisor to Parents magazine for its March 2011 commentary on special needs planning. Andrew believes that it is crucial for parents of individuals with special needs to make all of the arrangements necessary to protect and provide for each family member, and he is a frequent lecturer on this topic. Visit www.amcohenlaw.com for additional information about Andrew and his practice.

Voice [Guest Blog]

August 6, 2012 12:00 pm Published by

by Jeff Stimpson, QSAC Parent

I’ve hauled Ned and Alex out for a Sunday afternoon. The streets of Manhattan are yellow, empty and hot. I steer the guys toward the shade, figuring this is the kind of street-smarts a good dad imparts. “Shade, guys. Hug the shade. Water’s in Alex’s backpack.” Ned’s wobbly. Alex walks and walks and then breaks into bobs and weaves. I wish he wouldn’t do that. I’m sure he wishes he was home with his iPad. 

“Michael’s?” says Alex, who’s 14 and PDD-NOS. Ned is his younger brother. Michael’s is the crafts store nearby — and despite autism Alex sure knows it’s nearby — where they sell the plastic animals he always and always seems to want. “Yes, Alex, we’ll go to Michael’s as soon as we go to the sporting goods store to buy Ned his baseball glove.” Ned doesn’t have a baseball glove. I had one by Ned’s age. 

“Michael’s?” 

In Michael’s Alex yanks my arm toward the aisle of plastic animals. Thing is, he got a plastic bear yesterday. Tomorrow, while Ned is at baseball, the plan calls for me and Alex to hit clothing stores to find the right cut of narrow pants and shorts that my wife Jill insists — and I agree — that he needs to look anywhere near, God let’s face it, normal. I think yet another plastic animal in our house would be a good reward for good behavior during clothes shopping, and tell Alex so.
“Fireman?” Alex says, holding up a $4 plastic fireman. I thought they just had animals.
“No, Alex. Tomorrow. If you’re good while we’re clothes shopping.”
“Tomorrow…” Alex says. Does repeating words means he’s moving ahead? We bob around this retail environment for a while: Alex fiddles with the idea of making me buy a wooden letter; Ned finds a wooden cruxifix and thinks you drive into the vampire’s heart to kill him. I explain that no, you hold it up and keep the vampire away. I tried to show Ned “The Night Stalker” once. Ned didn’t seem interested. “Alex, let’s go!” 

“Dad,” says Ned, “how about some clam chowder?” He’s referring to the pot of stuff at the next-door Whole Foods. I’m ashamed to admit it as a born New-Englander, but what they call chowder at this next-door retail environment isn’t totally repugnant. “Okay, Ned.” So we go next door into the air conditioning and scoop out chowder. They even have a place to sit down to eat it. “Ned, go find us a seat while I pay.” 

He does. I find him. Four chairs, three of us. In a normal life, that would be enough. “Nooooo!” says Alex.”Nooooo!” I don’t know if it’s the heat or the backpack or that he will eat nothing we eat, but he will not sit down. Ned has his little cup of chowder — I’ve taught him to like the stuff — and I have my big bowl and neither matters to Alex. I tell him to sit down and he bites his own arm. 

“Alex, sit down! I want to eat my lunch!” Doesn’t everyone want to eat their lunch? Isn’t everyone entitled to eat their lunch? “Nooooo!” He bites. He squats on the floor. I feel and yet don’t feel the stares of the people at the table behind us. “Alex, I just want to eat my lunch!” 

Alex doesn’t do lunch. Haven’t I learned the simpliest lesson yet? I haul him outside. He squats on the sidewalk and when I order him to stand up he does and then squats down on the sidewalk again almost immediately. Ned appears. “Alex,” Ned says, “what do you want? Do you want the iPad? The iPad isn’t here. If you want the iPad we have to go home. You have to go home if you want the iPad.”

I’m not sure I can reach Alex anymore. I’ll know Alex 30 years if I’m lucky (at times I feel like I’ll know him 40 years if I’m not). Ned may know him for 70 years, if the love and caring doesn’t evaporate some afternoon on the floor of a place like Whole Foods.
You have to go home if you want the iPad. That is the voice of a parent.
Jeff Stimpson lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such as Autism-Asperger’s Digest, Autism Spectrum News, the Lostandtired blog, The Autism Society news blog, and An Anthology of Disability Literature (available on Amazon). He can also be found on LinkedIn and on Twitter @Jeffslife.

A Program Participant’s Point of View: QSAC’s ‘Fitting Together’ Gala [Guest Blog]

July 10, 2012 8:38 pm Published by
by Lea P. 

Photo Credit: Rahav Iggy Segev

The place to be was Gustavino’s on a rainy and cold June day for the QSAC gala event. Everyone was dressed up and getting pictures taken like celebrities. There were awards given out to recognize a few people in the QSAC community. In addition to the very pretty place and good food, performances were done by amazing singers. Overall, it was a time where the QSAC family can come together.  


After getting VIP reception, drinks and food, there was the first performance by a group called the Broadway Dolls (Tracee Beazer, Hollie Howard and Coleen Sexton, who are all actresses that appeared on Broadway). I recognized Coleen as an actress from the touring production of the musical Wicked which led to my mom and I talking to the other two girls. Tracee was in the original cast of the Tony Winning musical Memphis and she and Hollie did Hairspray together. They performed beautifully and you should look out for their next performance by checking their website or Facebook pages. Next presented was the Anita Smith Scholarship (named in honor of Anita Smith who was a victim in the May 2000 Wendy’s tragedy) to James Wilhelm and Meng Yao Hu. Two time Grammy nominated singer Martha Wash presented the Corporate Leadership Award to Pfizer, Inc., Autism Research Effort. She also got to end the evening with the famous song “It’s Raining Men” which got the audience on its feet. Another standout performer was Katie Shults who was the grand finale winner of Got Talent. A heartwarming speech was given by Duncan and Alison Niederauer who were awarded the Philanthropic Leadership Award. They had mentioned their son who has autism and the journey he has. Alison’s speech was touching and something the audience could relate to. QSAC Executive Director Gary A. Maffei was awarded for his 20 years of services with QSAC. I ran into a lot of people that I know from volunteering at the day school. I had a fun time and congrats to all the honorees that were recognized that evening.

Lea participates in QSAC’s community habilitation program and writes for her school newspaper.

Duties and Responsibilities of a Trustee of a Supplemental Needs Trust [Guest Blog]

June 4, 2012 2:45 pm Published by
by Andrew M. Cohen, Esq.

In a previous article, I wrote about the importance of a Supplemental Needs Trust and how it permits a disabled individual, as the beneficiary of the trust, to gain or maintain eligibility for means based government benefits such as Medicaid and Supplemental Security Income (SSI). Once a trust has its funding, the Trustee (the person or persons appointed as the Fiduciary to manage and administer the trust assets) is then responsible not only for the demanding financial requirements of trust management, but to do so in a manner that considers the disabled beneficiary’s financial, medical, emotional and social circumstances.

From the start, the Trustee of a Supplemental Needs Trust has all of the duties of the Trustee of any trust, including appropriate investment of trust assets, accurate bookkeeping and accounting activities, tax reporting on behalf of the trust and distribution of trust property to the beneficiary or beneficiaries, taking into account current and future needs. In addition, the Trustee of a Supplemental Needs Trust must be careful to factor in the special needs and/or welfare of the disabled trust beneficiary, to insure that the trust beneficiary maintains his or her eligibility for public benefit programs. This is accomplished by administering the trust properly and working closely with agencies, family members, social workers and benefit coordinators to make certain that the disabled person is reaping the maximum benefits from the trust and the best possible quality of life.

Perhaps the most difficult of the responsibilities of a Supplemental Needs Trustee is making appropriate disbursements on behalf of the beneficiary. The highest level of awareness as to how the distributions can affect public benefits is required. It is important for a Trustee of a Supplemental Needs Trust to know that if the trust is used for housing or shelter and/or food, then SSI benefits can be reduced (up to a maximum reduction of one-third). Housing and shelter not only include rent or mortgage payments, home insurance and real estate taxes, but also include heating fuel, gas, electric, water and sewer. “Household” expenses do not include such items as cable, phone, internet, cleaning services, landscaping, newspapers and other non-essential items, each of which can be paid for by a trust. Moreover, there are no limits on the amounts of purchases to be made for the disabled beneficiary for clothing, furnishing, electronics or medical expenses that are not otherwise covered by the government. Trustees also need to be keenly aware of local rules as well. In some counties, a First Party or Self-Settled Supplemental Needs Trust requires court budgeting and/or oversight prior to making any expenditures from the trust.

The above is a concise and far from exhaustive look into the role of being the Trustee of a Supplemental Needs Trust. While the responsibilities and tasks may appear daunting at times, a Trustee has the right and is encouraged to work with a knowledgeable team of professionals (financial, legal and/or accounting) to assist in making sure that the disabled beneficiary is having his or her needs met and enjoying life as fully as possible.

Andrew M. Cohen, Esq. is the principal of the Law Offices of Andrew M. Cohen. The firm concentrates on Trusts & Estates and estate planning, with an emphasis on planning for special needs families and disabled persons. Mr. Cohen has a Juris Doctorate and an L.L.M. in taxation. The firm’s offices are located in Long Island and Manhattan and can be reached at (516)877-0595, (212)244-0595 or on the web at www.amcohenlaw.com.

Government Benefits for Individuals with Autism [Guest Blog]

March 21, 2012 3:41 pm Published by
by Andrew M. Cohen, Esq.
When planning for a disabled person’s financial future, issues of entitlement to government benefits are an inevitable part of the discussion. The law is both complex and extensive with respect to qualifying for and obtaining such benefits. To make matters worse, two of the most common benefit programs, Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI), are each administered by the Social Security Administration; however, these programs offer very different benefits and have very different rules as to who may receive them.

SSI is a federal welfare program that pays monthly cash benefits to the poor and aged, blind or disabled. It was created as a “safety net” to supplement minimum monthly income, but does not pay for medical expenses. The base criteria for obtaining these benefits is that the applicant must be disabled (under the government’s definition) and have available assets of no more than $2,000 in countable resources. There are also significant limitations on monthly income. Prior to the age of eighteen, the income and resources of others in the household are considered in assessing eligibility. Currently, the maximum SSI benefit in New York State is $761 per month. When a person receives SSI benefits, that individual is automatically entitled to Medicaid based services, which include hospital care, physician services, prescription drugs and many programs that run exclusively through the Office of Persons with Developmental Disabilities (OPWDD). These OPWDD services can include family support, case management, respite, housing, supported employment, recreation, vocational training, adaptive devices, as well as day and residential habilitation services. Although the SSI/Medicaid income and resource limitations are highly restrictive and strictly enforced, Supplemental or Special Needs Trusts (discussed in a prior article) can protect the eligibility of the disabled individual for these crucial benefits.
While SSI is a needs-based program, by contrast, SSDI is an entitlement program and has no income or asset limitations. In order to receive SSDI benefits, a worker generally must have worked and paid into the Social Security system for at least ten years prior to his or her disability. The rules are very different if the individual can prove that he or she became disabled at or before the age of twenty-two, in which case the benefits received will be based on the work record of that individual’s parents. SSDI recipients obtain health care coverage through the Medicare program after twenty-four months. Adults with autism may also begin to receive SSDI payments when their parents retire or die. Thus, a disabled individual who has been receiving SSI benefits may later become eligible for SSDI instead. In some instances, an individual with autism may even become dual eligible, receiving a combination of these government benefits.
The one major similarity between the SSI and SSDI programs is that they use the same disability evaluation to determine if eligibility is warranted. This evaluation focuses on whether the individual is capable of being gainfully employed. While the specific criteria that the government uses to determine disability are beyond the scope of this article, it is vital to understand that unless the individual with autism meets the criteria for disability, he or she will not qualify for SSI or SSDI benefits. More information about these benefits can be obtained on the Social Security Administration’s website (www.ssa.gov) or from an attorney who specializes in this area.
Andrew is the principal of the Law Offices of Andrew M. Cohen located in Manhattan and Garden City, and he is the father of three daughters, one of whom has multiple disabilities and graces the cover of his business brochure. His practice focuses on Trusts & Estates and Elderlaw, with an emphasis on planning for families with a disabled child. Andrew is a charter member of the Academy of Special Needs Planners, a national organization of attorneys who are dedicated to providing high quality legal services to the disabled community and, in May 2010, he was selected by Exceptional Parent magazine to receive its Maxwell J. Schleifer Distinguished Service Award. Andrew was added to the Long Island Board of Directors of Easter Seals New York in February 2011 and he was an advisor to Parents magazine for its March 2011 commentary on special needs planning. Andrew believes that it is crucial for parents of individuals with special needs to make all of the arrangements necessary to protect and provide for each family member, and he is a frequent lecturer on this topic. Visit www.amcohenlaw.com for additional information about Andrew and his practice.

Providing for a Child with Autism [Guest Blog]

February 1, 2012 4:19 pm Published by

by Andrew M. Cohen, Esq. 

For many families that include a child with autism, the questions concerning who will take care of the child in the future and where the money to support that child will come from are daunting thoughts. Some parents choose to postpone planning rather than deal with the difficult reality that faces them; however, early, careful planning can secure a disabled individual’s future long after his or her parents have passed away. 
Parents and grandparents who continually put money and other property in the child’s name, even as part of jointly held accounts, could be doing a disservice to that child. A disabled individual is actually precluded from receiving means based government entitlements, such as Medicaid and Supplemental Security Income (SSI), when assets held in that person’s name exceed a specified amount. By contrast,completely disinheriting the child and relying solely on the government is not necessary and hardly qualifies as sound planning. Smart, proper planning is best achieved by creating a scenario that includes full eligibility for the government assistance, as well as whatever private resources the family can leave to provide a more comfortable future for their family member. This best of both worlds approach is accomplished with a Supplemental Needs Trust. 
The Supplemental or Special Needs Trust is often referred to as the cornerstone in formulating a plan to care for a child with disabilities. It is typically established as part of a comprehensive estate plan and funded with an inheritance and/or life insurance products, such as a second to die policy. If drafted correctly, the assets that fund a Trust will provide the “extras” for a beneficiary (the disabled individual) without affecting or disqualifying the beneficiary from those important government programs. The child retains the right to receive these means based benefits because this type of Trust is not considered a countable resource by the government. Once the Trust is established, it’s usually managed by a person known as a Trustee, generally someone similar in age to the disabled individual; there are also organizations and institutions that provide Trustee services. It should be noted that when a Trust is funded with money or assets of the beneficiary, such as a recovery from a lawsuit or a gift/inheritance directly to the disabled individual from another family member, payback rules apply with regard to the government benefits received by a disabled individual over the course of his or her lifetime. 
When properly created, a Supplemental Needs Trust provides a comfortable and secure future for the individual with autism, enhancing the quality of his or her life by providing funding for the “luxuries” in life not supplied by the government, while not affecting that person’s rights to receive government benefits.
Andrew is the principal of the Law Offices of Andrew M. Cohen located in Manhattan and Garden City, and he is the father of three daughters, one of whom has multiple disabilities and graces the cover of his business brochure. His practice focuses on Trusts & Estates and Elderlaw, with an emphasis on planning for families with a disabled child. Andrew is a charter member of the Academy of Special Needs Planners, a national organization of attorneys who are dedicated to providing high quality legal services to the disabled community and, in May 2010, he was selected by Exceptional Parent magazine to receive its Maxwell J. Schleifer Distinguished Service Award. Andrew was added to the Long Island Board of Directors of Easter Seals New York in February 2011 and he was an advisor to Parents magazine for its March 2011 commentary on special needs planning. Andrew believes that it is crucial for parents of individuals with special needs to make all of the arrangements necessary to protect and provide for each family member, and he is a frequent lecturer on this topic. Visit www.amcohenlaw.com for additional information about Andrew and his practice.

ABOUT US

QSAC is a New York City and Long Island based nonprofit that supports children and adults with autism, together with their families, in achieving greater independence, realizing their future potential, and contributing to their communities in a meaningful way by offering person-centered services.

QSAC pursues this mission through direct services that provide a supportive and individualized setting for children and adults with autism to improve their communication, socialization, academic, and functional skills.