If you provide care for an elderly relative or a special needs child you know how much work is involved in just getting away for an afternoon or evening, let alone planning for their care if you were to pass away. First you have to find a caregiver qualified to handle your charge’s more demanding needs, then there are lists upon lists of “what if” situations, a strict regimen of prescription medicines, and of course all of the little quirks and routines that must be strictly followed. And after all that, just when you feel comfortable leaving your loved one in the care of someone else… your “babysitter” moves away and you have to go through it all again.

What if there was a way that you could not only keep a record of all details, regimens and instructions, but also an easy way to update and communicate that information to any and all caregivers when anything changed? And would it be too much to ask to have this record somehow linked to all the latest research, resources and best-practice recommendations? Apparently it is not too much to ask, because this is exactly what the new online service, CareGiver360®, claims to provide.

CareGiver360® is the brainchild of Ken Ziel, father of a special needs son, who worried about what kind of life his son would have if anything were to happen to Ken. After much research, Ken started CareGiver360®, “an easy to use, interactive Web service that lets you create a secure Personalized Care Guide to help you manage the care of your loved one. CareGiver360® provides a wealth of caregiving resources through its searchable online library. You can draw upon this valuable resource to supplement your personal experience to create a customized, comprehensive care guide.”

CareGiver360® is a fairly new tool, but it sounds so good one has to wonder why nobody came up with the idea before. We would love to provide our clients and readers with helpful reviews, so if you’ve used the service please leave a comment letting us know how it worked for you. And we ought to mention that the service isn’t free, but at just under $10/month it’s probably not going to break the bank either.

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As an estate planning law firm we often have to take on the role of encouraging our clients to think and talk about difficult and sometimes sad issues. Sometimes, however, we have the joy of sharing something truly heartwarming. This video about autistic high school basketball player Jason McElwain is one of those things.

Many of our clients have children with special needs, and know that a basic estate plan is not going to have what it takes to protect and provide for those special needs after our clients have gone. If you have a child you would like to provide for, please contact our office to find out which may be the best tool for your family.

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Every parent’s first priority is making sure that their child is provided for; that is by far the main issue that brings young couples into our offices, especially if that child is underage—they want to insure that their child will be safe and cared for if that tragic “what if” scenario should ever come true. It’s easier to relax about the “what if” planning once your baby has grown up and doesn’t rely solely on you for food and shelter, love and security. But what if your baby wasn’t going to grow out of that, and would always rely solely on you for those most basic of needs?

This is something that parents of severely autistic children do need to worry about and plan for. What do you do when your child needs you as much at 50 as she did at 5?

The article “ADVICE: Planning for an Autistic Child’s Adult Years” focuses on that very question, and provides help and answers to parents who are trying to make a smooth transition from caring for an autistic child to caring for an autistic adult. This author makes a number of excellent financial recommendations, including signing up for government benefits, looking into long term care insurance, and creating a Special Needs Trust.

“If you have significant assets, consult a financial planner or estate lawyer who can help you set up a Supplemental Needs or Special Needs Trust that will specifically address how your child can benefit from your bequeathal without compromising any governmental aid.”

This sentence is probably the best advice you can get, but the phrase “significant assets” is a little misleading. Special Needs or Supplemental Needs trusts are not just for the wealthy. If you have a house you have “significant assets”. If you have life insurance policies for yourself or your spouse you have “significant assets”. When you’re talking about government benefits, “significant assets” is any amount that will make your child ineligible for those benefits, which can be as little as $2,000!

We know you want to provide for your special needs child at any age. Call our office and let us help.

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Individuals with mental illnesses already have a number of unique challenges to face, and now Time Magazine tells us they have one more terrifying prospect, because, according to Time’s recent article by Kate Torgovnick “on average, people with severe mental illness die 25 years younger than the rest of the population.”

There are many contributing factors to this shocking figure, but one of the main reasons the article gives is that “people with serious mental illness tend to be low on the socioeconomic totem pole and don’t often get the best available health care.”

The real tragedy in this scenario is that it doesn’t have to be this way. With the right planning—either by the individual in question or by loving friends and family—someone with a serious mental illness could still have access to the best medical care. And a special needs trust complete with provisions for an advocate or an advisory committee will provide the beneficiary with further protection; someone to ensure that his or her needs are being met, and any ailments are taken seriously by medical professionals.

With enough education and planning, perhaps we can improve the situations of those with mental illnesses… and change that shocking mortality rate as well.

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Our blog posts this week have focused on how the upcoming election could impact your assets and estate plan, and with our final post of the week it seems prudent to address the impact of the election on special needs families as well.

After Sarah Palin’s speech in Pennsylvania on October 24, there seems to be some confusion over how each candidate’s tax policies would harm or benefit people with special needs. CNN has published a helpful article which briefly discusses the proposed tax plans of both Barack Obama and John McCain, specifically how each would impact a person or family with a special needs trust.

For all the political maneuvering going on at this time, the fact that the concerns of special needs families are being discussed at all is promising. Especially considering that the discussion is taking place in a forum that is likely to reach so many people. Because what is just as concerning as the effects of taxes on special needs trust owners is the huge numbers of people out there with special needs who don’t have trusts all, and whose futures and finances are unprotected.

We hope that this very public discussion will bring awareness to those people who need it, whose families and children would benefit from the protection of a special needs trust. You can’t worry about the effects of taxes on your trust unless you have a trust. And once you have a special needs trust you have an advantage and protection that can’t be matched.

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Our blog this week has included a series of posts about families with special needs children, beginning with a mention of Sarah Palin in Monday’s post, and how she has helped bring the those families into the limelight. It seems appropriate to end our series with a letter written to Sarah Palin, published in the Concord Monitor. A letter from one mother of a special needs child to another.

Betsy McNamara’s letter is honest and eloquent. She writes of the joy she has in her son with special needs, of the hopes she has for his future, and the fear that his life (and hers) will be all the more difficult if the government and local communities don’t take steps to help children and families like hers. The fact that it is written to Sarah Palin seems to be secondary, it could be a letter to anyone in a position of authority, with the potential to understand her plight and help her son.

This letter speaks to all of us, whether or not we have loved ones with special needs. It describes the pure and unlimited love every parent has for a child, and the hopes and fears we have for them from the first day they’re born. Thank you to Betsy McNamara, who with her grace and courage has made our world a little more intimate.

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A Special Needs Trust (or SNT) is a wonderful—and necessary—tool to protect your Special Needs Child’s public benefits, to protect their inheritance, and to provide them with the extra funds they will need to have a home and food and clothing. But some parents still think it’s not enough. They know that something more is needed if their child is going to be truly and comprehensively cared for.

Does this mean Special Needs Trusts are inadequate, or should be avoided? Not at all! Because an SNT goes hand in hand with something called a “Letter of Intent”. Although the SNT carries all the legal weight, the letter of intent (which is not a legal document) will have the greatest impact on the day-to-day life of your child. A letter of intent is your message to the people who will be caring for your child if something happens to you. Consider the instructions you leave a babysitter when you leave your child for just a few hours. What would you want to say to that person if you knew you wouldn’t be coming back?

A letter of intent should address ALL the areas of significance in your child’s life. Here are just a few to get you started:

• A medical history and list of doctors and contact information
• Any allergies your child has
• A list of teachers, therapists, and any other important people
• Your child’s biographical information, including favorite foods and activities, likes and dislikes, best friends, and personality traits
• A rundown of your child’s daily and weekly routine
• Your family philosophy
• And most especially, your wishes for your child’s future

A letter of intent may not carry any specific legal weight, but it serves as more than just a list of instructions for your child’s caretaker, it also provides guidelines for your Trustee, the person who will be deciding how trust funds are going to be spent. The SNT and letter of instruction together provide a comprehensive security net for your Special Needs Child. If you wouldn’t leave her alone in the house, don’t leave her alone in the world. Create something lasting to protect her when you are gone.

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Regardless of your political leanings, it is undeniable that the nomination of Sarah Palin as the Republican Vice Presidential candidate has brought the issues and concerns of parents of special needs children into the limelight. Here at our office, we think that any media attention given to special needs families is for the better.

Most parents of a child with special needs know that they need to plan for that child’s future, but they don’t always know how. Some think that their child will just have to rely on public benefits for the rest of his or her life, some mistakenly believe they can put money into a savings account for the child to use when the parents are gone, and worst of all, some parents will leave their estate to their special needs child as an inheritance.

All of these parents have the best intentions, but none of them are actually doing the best thing for their child. (The creation of a Special Needs Trust to provide for the expenses of the child while still preserving his or her public benefits is most often the best course of action.) Why is this? It isn’t because the parents don’t care; it is because often they just aren’t informed. Accurate information and caring guidance is not always easy for parents of special needs children to find. Not only that, but these parents have much of their time taken up with more immediate tasks: the day-to-day care of a child with intensive and ongoing needs, working with school systems to ensure their child has fair treatment, keeping on top of government paperwork to get the resources they need to pay for necessary medical expenses.

We know these parents have a lot on their plates, which is why we want to help them in every way we can. Call our office for legal guidance, referrals to qualified advisors, suggestions for further resources, or plain old-fashioned support. Let us help you be informed and prepared.

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What is the ideal future you imagine for your special needs child when you look ahead? It might look something like the life of Frank Calloway; living to a contented old-age, spending time with memories of the past and engaged in an activity which brings great pleasure and peace. Most of all, looked after by competent and caring individuals who are truly concerned with his best interests.

But how can this dream be achieved on the $2,000 total assets that Medicaid recipients are allowed to have without losing their government benefits? How can responsible parents safely leave an inheritance to their special needs child? For Frank Calloway, part of the answer to that question is having a special needs trust.

Unfortunately, according to this article by Ryan Ori, not all parents know about the benefits of a special needs trust, or how easy it can be to create one—with the right help. A special needs trust is the vessel that will hold your child’s inheritance (from you or from another source such as grandma or grandpa) without disrupting that child’s government benefits. It gives your child the funds they need beyond the basic living expenses provided by SSI or Medicaid.

If you are interested in this tool, you will need to contact an attorney to help you with its creation. A special needs trust is not the kind of document that can be found in a software package or created from a standard trust template. The needs of your child are unique, and should be addressed as such. And an attorney will know about any state-specific regulations that will affect your trust.

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Autism is the fastest growing developmental disability in the country, according to the Autism Society of America, with a 10%-17% annual growth rate. These are disturbing numbers for parents and parents-to-be, especially when doctors aren’t always aware of the signs and indicators of autism. When doctors aren’t aware, and parents don’t feel secure enough to advocate strongly for their child, autistic behaviors can go unrecognized and undiagnosed for years, resulting in delayed treatment and therapies at crucial developmental stages.

This lack of awareness is evident not only in the United States, but all over the world, and the United Nations General Assembly is working to change it. To that end, April 2nd has been declared World Autism Awareness Day, a day dedicated to helping “raise awareness about autism throughout society and encourage early diagnosis and early intervention.”

Estate planning attorneys know how important it is to raise awareness not only about the signs and indicators of autism, but also about government resources for your autistic child, and how to protect his or her financial future. When your autistic child is receiving government benefits (as he or she may very well be entitled to) even the smallest financial gift or inheritance can endanger those benefits and make your child ineligible. Your attorney can help you avoid that situation with a Special Needs Trust.

Luckily, here in the U.S. we have many excellent resources for family and friends of autistic individuals on either end of the autistic spectrum, including Autism Speaks, AutismLink (with a nice page about Estate Planning Issues), Autism Society of America, and The National Autism Association. These organizations are dedicated to helping families of autistic children, working hard to raise awareness about autism not only on April 2nd, but every day of the year.

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