Apple’s iPad Proving to be a Boon to Special Needs Families

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Children with speech and communication problems are benefiting from apps designed for the iPad.

“Before she got an iPad at age two, Caleigh Gray couldn’t respond to yes-or-no questions. Now Caleigh, who has been diagnosed with cerebral palsy, uses a $190 software application that speaks the words associated with pictures she touches on the “tablet” device.”

According to the Wall Street Journal, Apple’s $599 device threatens to make obsolete specialized speech machines that can cost as much as $15,000: http://online.wsj.com/article

New Long Island Special Needs Radio Show

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Monday Evenings at 6:30PM EST

Special Needs Long Island is a weekly radio program dedicated to the special needs community on Long Island.  It is a forum where the latest information involving special needs will be provided.  Featured guests are from special needs organizations, professionals practicing in the field, families and individuals with special needs. The program is hosted by Jeff Silverman, Director of Special Needs Planning for the Center for Wealth Preservation in Syosset, New York. He can be reached by e-mail at SpecialNeedsLI@gmail.com or at (516) 682-3363

Tonight’s Special Guest is Me!

Join “Special Needs Long Island,” the radio program focused on the Special Needs Community, as we interview special needs planning attorney Ellen Victor, Esq., this Monday, October 11 at 6:30 p.m!

Questions can be called into Ellen during the show at (631)888-8811.

Ellen is uniquely qualified to answer your questions, as a special needs attorney (http://www.victorlawfirm.com/), blogger (http://longislandspecialneedslawyer.com/), and mother of a special needs child.

Here’s your chance to ask your special needs question of an attorney who focuses on this area of the law — for free.

Questions like:

• Why do I need a special needs trust?

• How do I choose a trustee for my special needs trust?

•Do I still need an SNT if my child isn’t on public benefits?

So be sure to tune in at 6:30 p.m. on Long Island’s WGBB 1240 AM.  For those out of the local broadcast range, or wanting the best clarity, the program is simulcast on the internet at www.am1240wgbb.com

Should We Celebrate Mental Illness Awareness Week?

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The National Alliance on Mental Illness (NAMI) celebrates Mental Illness Awareness Week (MIAW) during the first week in October.  In 1990, the U.S. Congress established MIAW in recognition of NAMI’s  efforts to raise mental illness awareness.

MIAW has become a NAMI tradition. According to NAMI, the week “presents an opportunity to all NAMI state organizations and affiliates across the country to work together in communities to achieve the NAMI mission through outreach, education and advocacy.”

The Good

Honoring the challenges encountered by those with mental illness and celebrating the achievements of loved ones with mental illness is certainly cause to celebrate.  The opportunity to raise awareness of mental illness promotes early intervention and exposes discrimination.  Other organizations also celebrate this week to promote their own interests.  Thursday, October 7, 2010 is designated as Bipolar Disorder Awareness Day.  The National Day of Prayer for Mental Illness Recovery and Understanding falls this year on Tuesday, Oct. 5, 2010.  These organizations believe  promoting Mental Illness Awareness Week is an opportunity to change attitudes and to raise money to promote further awareness.

The Bad

How could raising awareness of mental health and celebrating achievements be negative in any way?  Several strong stances have been taken against celebrating this week.  In an article well worth reading in full, DJ Jaffe suggests that hosting an event to reduce the stigma of mental illness is the wrong way to  look at this.   He states there is no stigma to mental illness, only discrimination.  He suggests that attempting to reduce stigma is detrimental because it diverts attention away from a significant issue; the most seriously mentally ill.

The International Center for the Study of Psychiatry and Psychology, Inc. takes issue with NAMI’s emphasis on psychiatric medication and main stream psychiatry.  They suggest that NAMI’s approach to psychiatric medication used on adults and children may do more harm than good.

What Do You Think?

Raising awareness of mental illness is important to me.  I also believe that mental illness should not be considered a stigma, anymore than race or religion is.  As a parent, I welcome any research into using psychiatry to lower medication use, but resent being made to feel that I am giving a child medication to make my life easier.

Where do you stand on Mental Illness Awareness Week?

The Clean-Up: New York Power of Attorney Overhauled Again

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As of September 12, 2010, New York’s Power of Attorney, having undergone a major revision just last year, has been amended  to clear up the confusion and unintended consequences of last year’s major overhaul of the power of attorney form.  All prior powers of attorney are still valid.

One important change is that revocation of prior powers of attorney is no longer the default provision, instead, in order to revoke a previous power of attorney a note must be inserted in the modifications section.

Powers of attorney serving primarily for a business or commercial purpose no longer need to use the format under the statutory power of attorney law.  The exceptions are enumerated in NY General Obligations Law Section 5-1501C and primarily exclude commercial, corporate and governmental transactions; proxy voting rights; financial institutions, real estate brokers; service of process; and decisions about health care and disposition of remains.

Other significant changes include the removal of the word “major” from the statutory gifts rider, referring now to “certain” gifts as opposed to “major” gifts. This eliminates confusion caused by those who did not find aggregate gifting of $500 annually major.  It is still ambiguous as to whether the rider needs to be utilized to make gifts or changes to interests in real property.

The new rules clarify how the  principal can revoke a power of attorney if the principal cannot locate the agent to give him or her notice.

Finally, the power of attorney can now provide for specific agent successor rules where as before it had been required that every agent be unable to act before a successor would be allowed to act.

Although total revocation of the Statutory Major Gift Rider would have been a better strategy, these amendments go a long  way to clear up some of the confusion caused last year.

Jennifer Aniston, Politically Incorrect?

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In the latest controversy this year over the use of the word retard or retarded, Jennifer Aniston used the word “retard”  self-deprecatingly on Regis and Kelly Live while describing how she plays dress-up for a living. The Oxford English Dictionary defines a retard as a mentally disabled person.  From Wikipedia:  Mental retardation (MR) is a generalized disorder, characterized by significantly impaired cognitive functioning and deficits in two or more adaptive behaviors with onset before the age of 18.  However, every school kid knows it is a hurtful insult meaning stupid and weird.

The Special Olympics Movement issued a statement in response: “Special Olympics is always disappointed when the R-word is used, especially by someone who is influential to society,” the statement reads. “The pervasive use of the R-word, even in an off the cuff self-deprecating manner, dehumanizes people with intellectual disabilities and perpetuates painful stereotypes that are a great source of suffering and negative stigma.”

The organization added, “We hope everyone will take our pledge to stop using the R-word and promote the inclusion and acceptance of people with intellectual disabilities at www.r-word.org.”

Sarah Palin, Rush Limbaugh and Stephen Colbert

Earlier this year, Sarah Palin called for Rahm Emanuel’s firing after it was reported that he’d called  liberal groups opposed to health care reform “f*cking retards,” but she then defended Rush Limbaugh’s use of the same word as satire.  Stephen Colbert later weighed in to Palin’s defense of Limbaugh.

Ian Birrell’s thoughtful commentary asks “When did people with disabilities cease to matter in the battle against bigotry?”  His article enumerates the many uses in popular culture, from the 17 slurs in Tropic Thunder to the Black-Eyed Peas’ song “Let’s Get Retarded.”

Government Use of Terminology

The term is currently under attack by educators and other professionals, believed to cause stigma in both the intellectually and developmentally disabled, and their loved ones.

New York is one of the few states that have not yet removed the phrase from the Office of Mental Retardation and Developmental Disabilities (OMRDD). 44 other states have chosen to use the term intellectually disabled.

Rosa’s Law, a bipartisan bill passed by the Senate earlier this year, and currently being considered in the House of Representatives, would amend language in federal law to remove the term “mental retardation” from federal health, education and labor laws.

Temple Grandin–A Beautiful Mind

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I may be mixing my movies about brilliantly challenged people, but “A Beautiful Mind” is a perfect description for Temple Grandin. If you watched the Emmy Awards Sunday you could not help noticing Temple Grandin, decked out in her cowboy finest.  If you wondered about all the well-deserved accolades, here is Entertainment Weekly’s review about the HBO biopic of Grandin’s life. Those of us in the autism community have long known and admired Grandin, a renowned advocate for both autism spectrum disorders and animal rights, especially cattle.

When I first learned of my daughter’s diagnosis of Asperger’s Syndrome, and began researching this disorder, I was lucky enough to find Grandin’s autobiography.  Soon I was able to breathe again, as I learned just how much someone with this disorder could accomplish.  Grandin earned her doctorate, became a university professor and single-handedly changed the way cattle are brought to the market.

This inspirational winner has been the subject of other films besides the HBO Emmy-award winning documentary.  “The Woman Who Thinks Like a Cow” can be found in its entirety on YouTube. It is worth watching to hear Grandin’s insights into autism from the first person point of view.  Grandin describes how much of what she does is as a result of anxiety and the desire to avoid problems.  This is a concise, clear explanation of why some of our loved ones act the way they do– the intense anxiety they live with daily; the inability to make a decision which might be wrong.  Grandin also discusses what it is like to live with sensory integration issues–how frustrating it is to concentrate with itchy clothing, an annoying sound, the wrong lighting.  It is inspirational to understand everything she has managed to overcome due to her autism and accommodate to achieve all her accomplishments.

Grandin explains that she believes the mind of an autistic person and an animal are very similar.  She states that the anxiety and panic attacks of an autistic person is comparable to that of an animal that is always alert for threats.

But Grandin says that she would never, given a choice, give up her autism.  In this TED interview The  World Needs All Kinds of Minds” , she discusses her belief that major technological advances coming out of Silicon Valley would not have been possible without autistic minds, that the world needs autistic minds to advance.  People with autism, she states, pay attention to details the rest of us miss; that problems with sensory integration also cause autistics to look at the world from a sensory point of view. The autistic mind is a specialist mind.

Temple Grandin, the child without a voice,  has become the voice of reason for autism.

Federal Help for Mentally Ill NY Youth in Custody

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“Until now, the state did not have a single full-time psychiatrist on staff to treat youthful offenders.”  This is the most startling sentence in this NYTimes article detailing the settlement which allows the federal government to oversee four of New York’s juvenile prisons.

New York’s juvenile prisons are the place where troubled kids are locked away to become even more troubled adults.  Children whose parents have lost control of their children can petition the court to have their children declared Persons in Need of Supervision (PINS).

Most of the children in the juvenile prison system are foster children. Many have endured abuse.  The majority of them are on psychotropic medication (via New York Magazine).  Most of the residents of these prisons are diagnosed with a variety of mental illnesses, yet up until now there has not been a single psychiatrist on staff.

The settlement was reached several years after a 15 year old emotionally disturbed youth died after being forcefully restrained by guards.  Investigators reported numerous incidents of injuries after physical force was used to discipline the children, including reports of broken bones, broken teeth and concussions.

Hopefully, besides employing full-time psychiatrists, psychologists and mental health professionals to oversee medication regiments and counseling, the state will continue to shut down these prisons and replace them with smaller centers near the families of the children.

My heart aches for these children.  Given a substandard education and an indifferent upbringing, warehoused with no counseling, they are given no hope of a better future.  Hopefully, the settlement reached today placing these prisons under federal oversight, limiting the amount of physical force guards may use and shutting down and replacing these warehouses with smaller community residences will go a long way to alleviate their suffering and give these children a chance to become productive members of our community.

Divorce and Special Needs Children

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Raising a child with special needs is hard on marriage.  Today, the divorce rate among all couples is over 50%.  Although statistics differ, there is no question that divorce rates are even higher among parents of children with special needs.

When a couple divorces, it is even more important to consider the financial needs of their child with special needs than those of their other children.  Child support charts do not address those needs.  A special needs child often has even more expenses than a child without special needs.  There are all types of therapies: occupational, speech, physical, psychiatric.  There is increased need for paid respite care for the caregiver parent.  There are non-prescription costs of vitamins and other dietary needs.  There are assistive devices, specialized cars, endless items that children with special needs require.

Child Support for Children with Special Needs

For children who are receiving needs-based government services such as SSI and Medicaid, parents and matrimonial/divorce lawyers should consider establishing a first-party self-settled special needs trust.  Child support belongs to the child, not the parent, so the trust cannot be a third party trust.  Child support in New York extends past a child’s 18th birthday until they are 21, whereas the child is an adult for Medicaid purposes in New York at 18.  Establishing an SNT for those years may be essential to getting proper services for the disabled child.

Guardianship

For those children with special needs who will require a guardian, the divorcing parents should consider which parent, if not both, will become the guardian once the child turns 18.

Education

Many divorce agreements call for the parent without physical custody to pay half of a full-time college education.  Those children with special needs who attend college often cannot manage a full-time program and the separation agreement should consider this possibility.  Also, the child may continue to attend college well past their 21st birthday, so this too should be considered when making financial decisions as to education.

Redrafting Your Estate Plan after Divorce

Divorcing parents of children with special needs should retain an attorney with experience in special needs planning.  If you have any questions, please feel free to call me.

The Difference between Medicaid and Medicare

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Previously, I discussed the differences between Social Security Disability Income (SSDI) and Supplemental Security Income (SSI) .  Two other government programs that frequently confuse people, including professionals, are the differences between Medicaid and Medicare.

Medicare

Medicare is a health insurance program for persons over the age of  65 and for those with certain disabilities who receive SSDI. A person must have entered the United States legally and have lived here for five years before becoming eligible for these benefits.

It is extremely important to understand that Medicare does not cover long-term nursing home care.

Medicaid

Medicaid is funded jointly by the federal and state governments.   Under certain circumstances, Medicaid will provide benefits for nursing home care.  In New York and a number of other states Medicaid will pay for home health care for those in need.

Medicaid is for those with low income and minimum resources.  Among those with low income who are eligible are:

  • pregnant women
  • children under 19 years of age
  • people 65 and older, blind or disabled
  • in need of nursing home care

A disabled person in New York would apply for Medicaid through the state agency.  Here in Nassau or Suffolk County, the application is available from the Department of Social Services.

It is a very complex and difficult application.  Many people retain the help of an elder care attorney to aid them in applying for Medicaid.  If you need assistance, please contact me by calling  (516) 223-4800 or by filling out the contact form on this website.