This chapter is excerpted from a book forthcoming from the Academy of Special Needs Planners.

 

Someday my brother may have a family of one: me.  Nathan is a 33 year old man with autism.  He is high functioning but has severe apraxia and requires round-the-clock care. 

 

Yesterday, my father and I brought him dinner from one of his favorite fast food restaurants.  He didn’t eat with us because he won’t eat hot food until it has reached room temperature.  I could tell he enjoyed our company because he asked questions, told us things he wanted, and laughed at my jokes to him.

 

I know I will have to take care of him.  He will be my responsibility when my parents die.  I had a sister who died but now there is only me, and all of our extended family lives out-of-state.  I would like to move to another state to be with my fiancé but we plan on a long-distance marriage because Nathan needs me here.  It is a big responsibility but I accept it willingly. 

 

I know I will not be as selfless as a caregiver as my parents have been.  I will rely on his paid caregivers to clean up vomit when he is sick.  I will rely on those same caregivers to ensure that he gets out of the house regularly.  But the buck will stop with me.

 

I am human and self-involved like most people, but I don’t resent the burden.  I worry about my ability to handle it.  As a single mom of twins and an entrepreneur, I pray my parents live a long time so that Nathan will not need me until after the twins are grown. 

 

I think my parents understand what they are asking of me but I’m not sure they appreciate my willingness to do it.  They take it for granted that of course I will do it.  Sometimes I wonder if it would be nice to hear them say they appreciate the burden I have ahead of me and my willingness to take it on.

 

Nathan will never appreciate what I will do for him.  He simply doesn’t understand how much is required to keep him in independent living.  He loves my parents, I know, but doesn’t appreciate all they do for him.  How could he?  He didn’t appreciate it when I protected him from mean kids as we were growing up, but then he barely noticed their taunts.

 

As an estate planning attorney with a focus in special needs, it was only natural that I would create my parents’ estate plan.  There is a special needs trust (SNT) and a revocable living trust that splits everything 50/50 between me and Nathan’s SNT.  But my parents wanted to provide more for Nathan.  I advised them to buy a life insurance policy payable to the SNT.  Even though I am a special needs planner, even though I understand my brother’s limitations and my gifts, it would hurt my feelings if their trust split assets in any formula other than 50/50.  So the life insurance policy is a good solution for us and for many of my clients.

 

I know that even with his SNT, Nathan will never enjoy the standard of living that I enjoy.  He lives in a small one-bedroom apartment.  I live in a spacious 5-bedroom house.  He is dependent on others for every errand or outing.  I have the freedom to follow my impulses and desires.  But he has a freedom I never will: the freedom to take care of only himself.

 

The SNT and my care will provide Nathan with a much higher standard of living than he would enjoy without it.  Without it, he could not afford his apartment.  Without it, he would have to choose between food and rent.  Without it, he would not be able to enjoy any of the extras that give his life joy.  For example, Nathan loves to fly; he especially loves the take-offs and landings.  The SNT provides that at least once or twice a year, Nathan is to take a lengthy plane trip with multiple takeoffs.

 

Without my care, Nathan would be left to the supervision of overburdened social and case workers.  Without my devotion, Nathan’s SNT might not provide extras that are not explicitly listed in it.

 

This responsibility I carry is for life.  I am only four years older than Nathan.   He is healthy and should live to life expectancy.  How will I care for him when I am in my 80s?  What will happen to him if I die before he does?  We have the same answers in my parents’ plan that I recommend for my clients:  a corporate trustee with an advocate to oversee the quality of his care.  But, like my clients, I know that will not substitute for family.  It is a fond hope that my small children will grow to take over my role if that ever becomes necessary.  But Nathan is not gregarious, fun and attractive.  He is serious.  He makes embarrassing noises in public.  He has violent temper tantrums.  Will they see through all his behaviors to the loving human being underneath who needs their love and care?

 

There are no easy answers.  One thing I know: as they grow, my children will learn about Nathan’s needs.  As they grow, I will share more with them about what my parents and eventually I need to do to keep him safe and happy.  As they grow, I will let them know how much I appreciate every visit to his apartment, every gift they thoughtfully choose for him, every comment they make about his care and comfort.  Perhaps my appreciation – one of the most powerful forces between people – will be enough.

 

The plan my parents and I have created for him will ensure that Nathan will always have food, clothing and shelter.  He will never be homeless or hungry.  But we want so much more for him.  The limitations of purely legal solutions frustrate me.  Only a combination of legal solutions and creative non-legal approaches can ensure that he always has food and never has a family of none.

The Conejo Recreation & Park District has released its Therapeutic Recreation catalog for Fall 2008.  It includes pages of activities including trips to sporting events, swimming lessons, bowling outings and dances.  For a copy of the catalog or for registration, call (805) 381-2735.  To volunteer, call (805) 381-2739 and ask for Sarah.

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:

The definitive book on planning for persons with disabilities: includes practice tips, sample forms for trusts and petitions, a discussion of family law issues, and a summary of public benefit law for persons with disabilities.

HIGHLIGHTS INCLUDE:

• Overview of estate, personal, and financial planning for children with disabilities 
• Discussion on planning for an individual with disabilities who receives assets from a litigation recovery or from Comprehensive discussion on how family law issues, ethical issues, and public benefits laws affect planning for persons with disabilities
• Detailed information on special needs trust administration issues such as distributions, taxation, termination, accountings, purchase of home, and hiring of caregivers 
• Complete attorney-drafted forms Written by leading special needs practitioners from around the state, this key text is ideal for both beginning and experienced estate planners.
  

The authorship of the book is shared by some of the most prominent practitioners in California and it is an honor to be listed together with them. For the attorneys and technically inclined clients on this blog, this book will fill a huge hole in your library. This is the first of what I hope will become many editions as the book finds an audience and becomes a magnet for state of the art thinking and writing on special needs trusts.

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.

Delays in obtaining services are not limited to government programs.  Private services, such as schools and developmental pediatricians are also overwhelmed.  In Boston, a diagnosis of Autism may be delayed by as much as 9 months, sacrificing much needed early intervention.

"Many people who haven't had the experience assume the hardest part is hearing your child has autism," said Ann Guay of Bedford, whose 12-year-old son, Brian, has the disorder. "But I think the greater challenge is trying to obtain the services you know your child desperately needs." -- Boston Globe

As a firm, we have moved to address this problem by assisting clients with advocacy with the appropriate agency.  Please call us if you are having a problem getting necessary benefits.

The legislature in Massachusetts is increasing funding.  We will be on the lookout for proposed legislation to do the same in California and will let you know how to support that legislation.

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!

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.

* The study continues to take the CDC's long-held position that there is no relationship between autism and childhood vaccinations.

* Prevalence of autism diagnosis rates varied greatly among states included in the study from a low of 3.3 per 1,000 children in Alabama to a high of 10.6 per 1,000 children in New Jersey.  I hope the CDC will investigate whether these wide disparities are due to vaccination rates, diagnosis abilities within the state, environmental factors, or genetic factors, among other potential contributing factors.

* Cure Autism Now and the Autism Society of America have both commented, demanding greater attention to the disorders and increased funding for research and treatment.

* The study looked at 8-year olds in 2000 and 2002.

You can access, download and read the full published results in a pdf on the CDC's website.

I invite your comments on this study to the blog.  I know that my clients and readers -- those parents and professionals dedicated to helping people with autism -- are avid students.  I know those of you who read the full study will find things that other blog readers would like to hear.  Please share.

And please check back for comments here as we do not email comments to blog replies to you.

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.

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!

 

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.

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