Special Needs Planning

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Finally! A Treatise on Special Needs Trusts

I am pleased to announce that a treatise on special needs planning has finally been published.  As an author of the treatise, I want to tell you all about it.  It has been published in two volumes by the Continuing Education of the Bar, a California educational publisher.  The treatise will be available on February 29 and can be pre-ordered at www.ceb.com.

Here is how CEB describes the book:

Services Harder to Get

Many of my clients have reported new challenges from Regional Center and other service providers.  These providers are cutting services to the bone in any way they can.  Some Regional Center workers are demanding financial information about the family (which, except the the Family Cost Participation Program, they have no authority to do). 

Other organizations, such as the Social Security Administration, are demanding copies of entire Special Needs Trusts, presumably to look for holes they can exploit.  (I am happy to share with my clients that the SSA has not found any holes in our trusts.)

School District budgets and services, already tight, are getting tighter.

A Boston Globe article on July 5, 2007 shows that this trend is not limited to California but is nationwide.  As agencies face flat funding levels but increased numbers of participants, benefits are squeezed.  We can expect this problem to continue and even grow.

Read on for more about the article and some solutions.

Another study: Genetic Autism Link

Coming just days after a major study on Autism was released by the CDC (see previous blog post), the results of another autism study were announced today.

Read about the study here.  The study found a link between Austim and a specific gene: neurexin 1.  "A previously unidentified area of chromosome 11" was also implicated.  Neurexin 1 is involved with glutamate.  I did a very basic search on google "neurexin 1 gluten" to see if this gene could be linked to the success some people with autism have had on gluten-free diets.  I invite comments from readers who did better in High School Chemistry than me.  Please decipher the google results.  Until then I am encouraged by the number of links,  suggesting there is some connection.

The research was funded by the National Institutes of Health and the non-profit, Autism Speaks.

Autism Speaks is also behind the arresting ad you may have seen recently:

I am thrilled by the dramatic potential to use these results in therapies someday.   I am warmed by the devotion shown by the 120 scientists in Europe and America who collaborated to complete the five-year study that included more than 1,000 families. 

Kudos to everyone involved.  Bravo!

Largest Autism Study to Date Released

Today's USA Today released the initial results of the largest study of autism to date.  The study was also discussed in the Los Angeles Times and other major newspapers.  It was funded and conducted by the US Centers for Disease Control, a controversial player in the debates over autism and vaccines.

The key points:

* The study has found that autism spectrum disorders (defined in the study as including PDD-NOS - pervasive developmental disorder - not otherwise specified) are being diagnosed at the astonishing rate of 1 in 150 children.  (The L.A. Times notes that since the study parameters were different from previous studies it is possible that this does not indicate an increase in autism.)  It is, however, the largest and perhaps most persuasive study conducted to date on the prevalence of autism.

Assisted Living Costs in California $1,300 to $5,500 / month

Each year, MetLife surveys the cost of assisted living facilities in all 50 states.  While the survey is performed by Met's  elder services group, The MetLife Mature Market Institute, the numbers can be helpful for families planning to provide for a person with developmental disabilities who may not be able to live without 24 hour care.

This year, MetLife surveyed three California cities and found a range of $1,300 at the lowest end to $5,500 at the highest end. In Los Angeles, the average base rate was $2,426.  Base rates typically include two or three meals per day, assistance with "activities of daily living," medication management, laundry and housekeeping. 

While assisted living costs are up 17% since 2004, this year's increase was a modest 2.2%.

For families with kids who may not require skilled nursing care but who also may not be able to live at home, these numbers are a good basis for projecting the cost of lifetime care for their child.

To ensure that children receive the maximum government benefits they are entitled to, a special needs trust should be established to provide the child with important quality-of-life goods and services like dental care.  The Special Needs Trust is the gold standard in protecting the child's inheritance when the parents are no longer there to help.

Toy Guide for Special Needs

With the holidays approaching, I know the dread of many siblings of adults with special needs: what am I going to get my brother?!  For parents of children with special needs that question can be even more daunting because their children's development may be advanced in one area and delayed in a another which makes finding a toy that's both challenging enough to be engaging and easy enough to be enjoyed is tough.

Toys R Us is now distributing a guide developed specifically to address choosing the right toys for kids with special needs . 600,000 of the "Toy Guide for Differently Abled Kids" will be printed and available at Toys R Us.  Of the 85 toys listed inside, 79 can be obtained at stores other than Toys R Us.  The guide indicates for each toy, which developmental area it can stimulate.

You can even look at it online right now!

You Can Leave Your IRA to a Special Needs Trust

In a private letter ruling recently, the IRS addressed the issue of transferring an inherited IRA into a Special Needs Trust.  The law around taxation of inherited IRAs and the interaction with trusts has been unpredictable and fast-moving for several years now.

Fortunately, this private letter ruling indicates the direction the IRS is headed on two important questions:

First, the transfer to the SNT was not a taxable transfer for estate and gift tax purposes.  That's great!  It means that if a person with special needs inherits an IRA, we can still do some limited planning without immediate tax consequences.

Second, the trustee was able to stretch out the distributions from the IRA (and therefore stretch out the tax deferral benefits) over the life expectancy of the beneficiary.  Another positive result.

Of course, the best result would have been achieved if the decedent had made the IRA payable to the SNT directly.  That way, court costs, private letter ruling costs, anxiety, and a "pay back to the state" provision all could have been avoided.

Unusual Mom's Advocacy Site

For those of you who enjoy a humorous but substantial approach to advocacy, check out Mothers From Hell 2 .

Announcing The Academy of Special Needs Planners

I am delighted to announce the formation of a ground-breaking organization:  The Academy of Special Needs Planners.

Harry Margolis (Managing Partner of Margolis & Associates, a Boston law firm, and founder of Elder Law Answers ), Vincent Russo (Managing Shareholder of Vincent J. Russo & Assocates, a New York law firm, and past-President of The National Academy of Elder Law Attorneys ) and I have joined forces to create The Academy of Special Needs Planners ("ASNP").  ASNP is a national member organization of attorneys who are dedicated to improving the lives of people with special needs by helping them and their families plan for the future.

The Academy's website connects families with attorneys who are experts in providing legal guidance and services that enhance the lives of their loved ones with special needs.  Our new organiation offers information, education, networking and assistance to our member attorneys, to other professionals concerned with special needs planning, and to families of people with special needs.

As my co-Founder, Vince Russo,  says, "Clients need attorneys who combine compassion with skilled estate planning and knowledge of the public benefits programs on which many individuals with special needs must rely." 

Exciting New Reminder Technology for People with Asperger's and Autism

Does your child or family member with Autism or Asperger's appreciate reminders?  Does he like repetition of social cues, like "make eye contact"?  My brother has a list of things he likes to be reminded of in particular situations.  For example, when he's at the airport, he likes to be reminded, repeatedly, not to make jokes about hijacking.  He gets very worried that he might say something inappropriate.

My parents and I have always acted as his reminder system.  We all know the scripts.  When he asks about an imponderable, like why he gets upset by barking dogs, he wants the answer "Why does Scott hit?"  (Scott was a classmate who, much to Nathan's distress, could not seem to control his hitting.) 

Unfortunately for Nathan, we are not always with him.  This must be one of the reasons he is unwilling to be in stressful situations without family present.

The Boston Globe has written an article on a new technology that helps people with Asperger's and Autism to remember the social cues and scripts using a hand-held PDA.  I think it can be applied to all sorts of reminders.  To read the story, Click Here .  To check out the technology company's website, go to Symtrend.