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

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

Should We Celebrate Mental Illness Awareness Week?

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?

Jennifer Aniston, Politically Incorrect?

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

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

“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

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.

Are Schools Prepared for an Increase in Autism-Related Special Needs?

The reported rate of autism spectrum disorders (ASD) has significantly increased and is now expected to affect 1% of children ages 3 to 17, or approximately 1 in every 100 children, according to two recent major studies.  Both the Centers for Disease Control and Prevention (CDC) and a study published in the journal Pediatrics indicate that the reported rate has increased from previously reported levels of 1 in 150 persons.  Even more alarming, boys are four (4) times more likely to have ASD than girls of the same age, which means that the likelihood of having a boy with ASD is around 1 in 60, a staggering number.  The second government study conducted by the Health Resources and Services Administration used data from the 2007 National Survey of Children’s Health.

Some researchers urge caution when interpreting the new numbers, suggesting that the reported increase is due to increasing awareness of the symptoms, as opposed to an actual increase in diagnoses.  Additionally, according to the children’s parents, many of the reported cases are mild forms of the disorder. Controversial author David Kirby questions this theory at the Huffington Post.  He asks if the actual rate of autism in children has not increased, how is it possible that as adults we have not noticed that 1 in every 60 adult males we come across has some form of ASD?  Kirby adds anecdotal evidence from long-term teachers and special education administrators who cite their long years of experience in refuting the notion that reported increases in autism related disorders are merely a function of greater awareness.

As many parents and professionals know, autism and related disorders such as Asperger’s and pervasive development disorder can be a frustratingly difficult diagnosis to make as it can only be made based on behavior instead of by more objective means such as a blood testing.  These behaviors include difficulties with social interaction and communication and are often accompanied by repetitive behavior.

However, whether the increase is due to better reporting or an actual upsurge, better informed parents and doctors mean more parents demanding educational and other services.  As this population ages, there is no doubt that both the government and private sectors must be prepared for an escalation in demand for supportive housing, employment, social and financial support.

According to CNN and the Associated Press, Dr. Tom Insel, director of the National Institute of Health, stated that the federal government is increasing resources to address autism and related disorders, adding millions of dollars for autism research, screening and treatment and adds that President Barack Obama has made autism research a priority.

It is more important than ever to plan for the future of our disabled children.  We should not depend solely on government support to financially support our disabled children, whether diagnosed with an autism spectrum disorder or any other type of disability.  Just as our federal and state governments need to prepare financially for the influx of disabled children into the school and health care systems, parents need to make estate planning a priority to ensure the financial well-being of the disabled population as soon as possible.

Reaching out to the Disability Community-An Important Government Resource

Recently, the federal government moved to the technological forefront with its launch of Disability.gov.  This relaunched website fulfills its stated purpose of Connecting the Disability Community to Information and Opportunities.  Disability.gov successfully uses social media tools to reach out to visitors and encourage interaction.  There are online discussions and a user-friendly way to get answers to questions about such topics as finding employment and job accommodations for disabled individuals.

The new website was launched in conjunction with the 19th anniversary of the Americans with Disabilities Act, and integrates content from 22 different federal agencies.  According to Secretary of Labor Hilda L. Solis, “Far more than just a directory of federal resources, Disability.gov is a meeting ground for Americans to learn, respond and communicate about a wealth of critically important disability-related topics.”

Despite the numerous topics, and thousands of links to federal agencies, educational institutions  and nonprofit organizations, I found getting around the new site easy and enlightening.  A recent interview on Special Needs Truth ’08 between Mark Miller and Kevin Connors, the site’s program director and Department of Labor employee, highlights the difficulty of coordinating the numerous agencies that contribute to the success of the website.

Whether you are a disabled person, family member, caregiver, employer, educator, veteran or simply interested in more information about disabilities, this site is a must follow.

Twitter Updates

One way of receiving information and updates is to follow Disability.gov on Twitter.  Each day, the site tweets new resources and information on one of seven disability-related topics:

  • Monday–benefits and housing resources
  • Tuesday– technology and transportation resources
  • Wednesday– education resources and info
  • Thursday-health related resources
  • Friday–veteran and employment resources
  • Saturday–independent resources
  • Sunday–emergency preparedness resources

Additionally, the site frequently tweets favorite empowering quotes.  Recent ones include:

Ted Kennedy: “The work goes on, the cause endures, the hope still lives and the dream shall never die.”  and Helen Keller: “Life is either a daring adventure, or nothing at all.”

The Government Blogs About Disability Too

Numerous contributors blog about both the resources mentioned above and other topics of interest to disabled individuals and veterans.  One post recently contained a fact sheet for people with disabilities who want to start a business and included resources across the country for people that want to become self-employed.  Another blog specifically targets Youth Programs and recently highlighted a program for Project Search.  Other discussions center around mentoring and intern programs for disabled young people.

According to Kevin Connor, the redesigned website was “tested using a variety of assistive technology software and on various machines with the many different browsers that are available”  to make the site not only accessible, but usable by its many visitors.

If you have not yet visited Disability.gov, I encourage you to take a little time to get acquainted with the various features and tools.  I assure you it will be time well-spent.

Choosing a Trustee for Your Special Needs Trust: Part Three

In Part One and Part Two of Choosing a Trustee for Your Special Needs Trust, I described the numerous duties of  a Special Needs trustee and the different factors that must be considered in choosing the trustee.  In this final post, I offer some suggestions as to how to make that choice in order to fully accomplish the goals you had in establishing the trust to take care of your special needs child both financially and emotionally.

One helpful suggestion is to divide the duties of the trustee into three major categories: financial, personal and administrative.  Think about if the trustee you plan to choose is capable of managing all three of these areas successfully.  If not, there are several strategies a good estate planner can use in order to ensure your child’s SNT is successfully implemented.

Selecting the Right Trustee for Your Special Needs Trust

Family Members

One possible choice of trustee for the Supplemental Needs Trust is a family member.  You may  be thinking of choosing one of your child’s siblings or one of your own.  It is, after all, comforting to know that the disabled individual will always have someone loving looking after him/her.

The biggest problem with placing a sibling (or any other family member) in position as trustee of the disabled person’s financial affairs is the burden it places on both the sibling and the relationship the sibling has with the disabled family member.  One of the most difficult provisions of administering an SNT for a beneficiary who needs to keep their eligibility for government benefits is that for every dollar over $20 the beneficiary receives in cash, the SSI recipient will receive one dollar less.  Should the cash outlay exceed the SSI, the beneficiary is in danger of losing all public benefits.  When a sibling or other family member must be the person to have to deny his brother/sister’s request, this places everyone involved in an awkward and uncomfortable position.

Additionally, many family members will not understand all the different rules that must be followed, and will have to employ financial advisors to help manage the SNT.

Corporate Trustees

Another possibility is a corporate trustee.  In New York, a bank or brokerage house can serve that purpose.  Many clients will balk at this idea, believing a bank to be cold and disinterested.  Many financial institutions have special departments to serve the needs of disabled beneficiaries. If you would like to learn more about corporate trustees that handle Special Needs Trusts, please contact me for more information.

One valid concern about a corporate trustee is monitoring and oversight.  A second is concern over the rapid mergers and recent dissolution of even the largest players in the financial services industry.

Also, many corporate trustees will not accept smaller accounts and take a percentage off the top for administrative services.

Co-Trustees and The Trust Protector

In order to handle all aspects of managing an SNT, you can choose co-trustees, wherein a family member and the corporate trustee manage the trust together.  The SNT should establish what happens in case of a conflict between a corporate and a family member trustee.

Another solution is to name a trust protector in the Special Needs Trust to monitor the corporate trustee.  That person might be a family member, accountant, or a member of a local chapter of NAMI or ARC.  This relieves the family member of the many duties associated with properly administering and investing the assets in the SNT, but allows for replacing the corporate trustee should the corporate trustee be neglecting the trust, investing improperly or merging its existence with another institution that might not meet the needs of the beneficiary.  This also gives the family member an “out” so that they are not seen as the “bad guy” to the disabled beneficiary.

T-E-A-M spells Trustee

The best solution, if practical financially, is to have a team in place.  This team could consist of investment managers, family members, care or case managers, long-term caregivers and most importantly the beneficiary themselves.  Part of the goal, if possible, is to promote independence for the beneficiary and while any direct management of the SNT might cause the beneficiary to lose government benefits, the beneficiary should, if able, certainly be included in the decision making process.

Choosing a Trustee for Your Special Needs Trust: Part One

Choosing a trustee to manage your child’s Special or Supplemental Needs Trust is one of the most difficult decisions you will have to make.  That decision alone often stops parents from taking the next step of setting up an appointment with an attorney who has expertise with drafting Special Needs Trusts.

After all, how can we, as parents, choose who should be responsible for managing both your disabled child’s money and also be in charge of their welfare for what could arguably be the next 60 or 70 or 80 years?  I certainly struggled with this for years.  Both my parents were only children, as is my daughter and her father, and my brother has no children.  That translates into no siblings, cousins, aunts or uncles.  I’ve spent a lot of time worrying about the future, and who will be left to care for and about my daughter after I die.  And while I plan on living for a long time, my hope and expectation is that my child will live many years past my life expectancy.

We automatically look to family members, but I hope to show you that this is not necessarily the best idea or the most practical when choosing a trustee.

The Many Hats a Special Needs Trustee Must Wear

The trustee who administers your child’s Special Needs Trust has many responsibilities:

  • Fiduciary:  Your trustee must dispense funds to the beneficiary in accordance with the provisions in the Supplemental Needs Trust.  That trustee must also invest the trust’s assets wisely in accordance with a number of laws including the Prudent Investor Act.  The Trustee must be able to handle tax matters, to keep good accounts and understand the duties of loyalty and care.
  • Government benefit issues: In addition to the fiduciary responsibility every trust mandates, the trustee of a Special or Supplemental Needs Trust must also have a complete understanding of the rules that govern Social Security, Supplemental Security Income, Medicare and Medicaid.  The trustee may need to understand Section 8 entitlements and rules of the Office of Mental Health (OMH) and the Office of Mental Retardation and Developmental Disabilities (OMRDD).
  • Meeting the needs of your disabled loved one:  The trustee must be able to understand and respond to the needs of your child.  The trustee must be sensitive to your child’s needs and also have an understanding of the special services that are available to support, encourage independence if possible and improve the quality of the life of your child with special needs.
  • Standing in your place:  The trustee can never replace you, but should genuinely care for your child.  For example, if your child should need hospitalization or institutionalization,will there be someone who will visit and ensure your child is not being neglected or abused in any way?  If your child begins to use drugs, or stops taking prescription medication, or going to therapy, or any of a number of signs we as parents know are signs of deterioration, will your trustee also know to watch for these?
  • Immortality: Your trustee must be able to manage the trust for as long as your child needs care.

Clearly, there are many things to think about.  In Part Two of Choosing a Trustee for Your Special Needs Trust, we will examine some of the considerations used to make this extremely important decision.