This may be the hardest, most important question you will face in the entire estate planning process. If your child is young, the guardianship question is probably harder and more important but this is a close second! I say this not to intimidate you but to reassure you that hundreds of our clients have been in your very position before and every single one of them has found a solution.

We can go into greater detail on any of these in the comments or on a future blog, depending upon demand, but for now we’ll look at a brief overview of your options:

Your Parents: they might be great as a temporary solution but in the natural order of things, they will not live long enough. This Special Needs Trust needs to last for your child’s entire life.

Your Siblings: while they can be a great choice for initial trustee or successor trustee after you, they too will probably not outlast the trust. But they can manage it while we wait for other candidates to, literally, grow up.

Your Other Children: this is a mixed bag. While they are the same generation as your child with special needs, there’s no predicting who will outlive whom. Then there is the burden. You may be counting on you other child(ren) to visit or even to act as Guardian/Conservator to your child with special needs. The job of Trustee, done properly, is an onerous one, fraught with liability. Finally, if your child with Special Needs has more than one sibling you MUST consider family dynamics. Can you name them all as co-trustees, or will that be placing your Beneficiary in the eye of an endless hurricane? If you choose one, how will the other(s) react to “the chosen one” and to the Beneficiary?

Your Special Needs Trust Attorney: in limited cases, I will agree to act as a successor trustee for clients. It often makes sense when naming family does not, and the clients want more personalized attention than a bank can provide. Of course, since I’m mortal, my back up is usually…

A Bank or Trust Company: their minimum trust sizes range from $300,000 to $1M, with the vast majority of banks, brokerage houses, and trust departments either refusing to accept Special Needs Trusts or setting their minimum at $1M. They have one big advantage and that is “deep pockets”; however, in my experience, it’s very hard to get anything out of those pockets because they will not accept a trust that holds them to a standard of accountability that is any higher than “gross negligence“. Gross negligence is very difficult to prove because it goes beyond all kinds of mistakes that no one in their right might would make to mistakes that are just outrageous.

Sometimes a combination makes sense. For example: the estate planning attorney together with the brother of the beneficiary. Then, whichever of them lives the longest with a bank that has a stellar trust department reputation. Then, the bank alone with a Care Manager-style Advocate for the rest of the Beneficiary’s life.

If you find yourself more confused about your choices than before you read this post, don’t be alarmed. That’s just because you realize you have more choices than you thought.

Many a client has resolved an “impossible” situation in my office, not because I have the answer but because I have learned to ask great questions over the years.

So come in, have a cup of coffee with me and let’s take on your toughest choice together. I promise it will be time well-spent.

Yours truly was flattered to be interviewed by Disability Scoop, the first nationally focused online news organization “serving the developmental disability community including autism, cerebral palsy, Down syndrome, fragile X and mental retardation, among others.”

This promises to be a great resource for special needs families. You can read the full interview, which covers everything from special needs trusts to conservatorships to when Supplemental Security Income is available to a person with disabilities, here.

Agnews, opened in 1888, is the oldest in a group of “Developmental Centers” in California. These centers, similar to mental hospitals in feel and quality, have been used to house as many as 20,000 developmentally disabled people at a time. Agnews, in fact, was a mental hospital until 1965.

For many years, avoidance of the Developmental Center as a living arrangement was a primary concern for parents planning the future of their kids with special needs. Adults with special needs who had no place else to go often ended up in these locked, confining and dark centers, alone, with no visitors. Clients who had children with special needs in the 1960s tell me stories of being encouraged to turn their children over to Developmental Centers and pretend they never had them.

But the danger is not over. In many states, Developmental Centers continue operations without any slack, sometimes despite media attention on egregious living conditions. In California, four Developmental Centers remain open and house 2,310 residents. The closest Developmental Center to Westlake Village that is still open is Fairview Developmental Center in Costa Mesa, which has 504 residents. Progress has been made in the provision of a decent quality of life for people who live in Californian Developmental Centers but most Advocates hope to see them all closed as soon as possible.

If you have a Special Needs Trust with our office, you may recall a brief discussion we had over whether your child’s SNT could ever be used to pay for a Developmental Center. Every single client has always said “no.” So I can confidently say that if you have a SNT with us, it prohibits the Trustee from supporting a Developmental Center placement.

If you want to do something to help, support Mary Omoto’s Sacramento organization, California Disability Community Action Network at 1225 8th Street, Suite 480, Sacramento, CA 95814.

If you want to stay on top of the news about Developmental Centers and other Sacramento-related special-needs updates, subscribe to the CDCAN newsletter by sending an email to martyomoto@rcip.com or visit www.cdcan.com.

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.