When You Are No Longer Here

Having read over my posts for the past several weeks I have noticed that I have been a total maudlin pain in the butt. I would like to take this moment to thank everyone for coming back. I was thinking of blaming it on that hormonal descent called menopause. But then figured it was rather disingenuous, much like blaming others for your failings or for your inability to solve the economic crisis. I decided it was whining. I concluded that I won’t pass the buck, but that I do want kudos for recognizing that I have been in one of those moods and that I need to get my head out of my butt.

A topic has come up that I think we as parents need to address. What happens if we die and our children can’t take care of themselves? What kind of planning goes into securing your child for when you are no longer around? Yes, this is much better than I have been. It’s not like I am talking about the Holocaust, healthcare or suing the schools. Unfortunately, however, this topic  is something that we have to talk about and something that is a realistic necessity.

There are several issues here. The first one being guardianship. Now, every parent needs to appoint a guardian for their children no matter what. There is no law in heaven or earth that says we are granted long life. Percentages are on our side, but statistics don’t matter when it happens to you. Make sure the guardians are really going to be someone who understands your child. They should have regular contact with your child and should be kept abreast of changes in your child’s care. Brilliant-computersis is guardian for our children. She gets periodic updates as to doctors, medications and she has been given a copy of our healthcare proxies, power of attorneys and wills.

Now the added issue with special needs children is the fact that there is a possibility that this guardian will actually oversee your child through adulthood. Make sure that they are open to supporting your special needs child as a special needs adult, that they are aware of the extra burden that could bring to their lives. In fact one added burden, other than the day to day care of your child, is the fact that as they age, they may have to appoint a new guardian for your child. You can have a secondary guardian chosen but that doesn’t mean that that person will outlive your first guardian choice. You need to be wholly sure that your child’s guardian has the thoughtfulness to be able to replace themselves with a proper individual.

Please note: a lot of parents think that the appointment of a guardian is not necessary. That family will just step up and that the courts will allow for guardianship despite the absence of paper. The court does not have to allow for anything if it is not in writing. They can appoint anyone they choose to take care of your child, including placing them in foster care. The scary thing is that the courts can override your will too if they think it is detrimental to your child. This is why it is important to hire an experienced estate lawyer to write an ironclad will. Also remember that wills, as with guardianship is on a state by state basis. So what works in one state does not mean it works in another. If you move you need to fix your will. Please whatever you do, do not try to do this on your own with a form.

The next issue is ensuring that they have money to live on, if they can’t take care of themselves. What you would want to explore with an estate lawyer or financial advisor is the creation of a special needs trust. These individuals need to be practiced in not only your particular state law, but in federal tax law as well. A special needs trust is different than a regular trust. Basically a trust is a financial instrument that allows your children to receive income from investments on the principal without violating those monies. A trust has some very basic regulations, but for the most part can have any duration, rules or preconditions for the recipient. The difference with a special needs trust is that it is written in such a way as to prevent your child as being seen to have too much income to qualify for social security disability or Medicaid benefits when they are adults. It is how the money is accounted for and where and to whom it is distributed that is the essential ingredient in the special needs trust.

We do not have a special needs trust. It is a basic trust that stipulates ages, requirements for distribution and what and how property is to be divided between the two boys. However, there is a clause that if either of them is adjudicated incompetent (adults who are unable to care for themselves) then the trust does not dissolve ever. We have not gone the route of a special needs trust as yet. Are we foolish? Perhaps, more like wishful thinking, hoping that the boys will be able to stand on their own two feet.  I’ll let you know if we change our minds in the future. The truth of the matter is that the trust will not come into being until we are dead. It is based upon our life insurance.  As we are the primary beneficiaries to each other’s policies, the secondary beneficiaries are the trust under our respective wills.

This also takes us to another much overlooked issue. What happens legally when your child turns 18? At 18 they are legally adults. They can sign contracts, get a credit card, they are held to an adult standard in court, can own a gun, and go off to war. They can purchase narcotic medications from a pharmacist but they cannot drink alcohol. There are a couple of decisions that you have to make at this time. First is whether or not to start proceedings while they are 17 to have them adjudicated an incompetent. This would allow you o control their health, their money and any major decision they have to make in their lives. This is on a state by state basis, meaning you need again, a good estate lawyer or a lawyer who specializes in the rights of the disabled to tell you which is the best course of action. You need to find out the overarching ramifications of this type of proceeding on your child’s future.  The courts also do not use this lightly. It is not just because a child is immature or slightly developmentally delayed. It is a major step and the courts are required to guarantee that a person’s liberty and freedoms are not arbitrarily restricted. It is not that easy to accomplish.

So if your child is high functioning and you do not want to go the “incompetency” route for any reason what are you to do to protect your child? Well first off, there is a list of estate papers that they need to sign. Many parents, even the parents of neurotypical children, do not realize that once they are 18 you do not get say about their healthcare. Now if you have been going to the same doctor for years and they know you, yes they are prone to listen to you. But the issue is what will you do if there is an accident and your child is in a strange hospital. What if your child does manage to go away to college? The school does not have to inform you about anything to do with your child. The first thing you must do is have your child sign a healthcare proxy, power of attorney and a living will. By the way, you should have all of these too. If your child goes away to college then they need to sign the paper allowing the school to discuss issues with you. If you do not and your child has a breakdown and ends up in the hospital, no one has to tell you. When I first thought that these papers were a necessity for collegeman I called our estate lawyer who told me that she had  had her children sign the same papers when they turned 18 too. Her children are neurotypical.

So I hope this discussion has helped you realize that you may have some work to do. I know that I tell everyone to live in the moment with your special needs child, take each day as it comes and deal with the problem at hand. But sometimes there are some things that you need to be forward thinking about. We as human beings don’t like to think of the inevitability of our demise, but we do need to protect our children. Securing their future takes many forms.


Until next time,

With my head firmly planted back on my shoulders (hopefully),


P.S. I just thought of something totally unrelated to this post but necessary. If you have not already done this- get a medical alert bracelet, necklace, information card for your child. Put their diagnosis, emergency phone contact and a list of their meds on the back. If there is room, their name is also important.

CAVEAT: The following is from my own personal experience. I am not nor have I ever been an estate attorney. Do NOT rely solely on this post for information concerning estate planning for your child. Please consult an expert in the field of estate planning for special needs and disabled individuals. Consult your local Bar Association for recommendations. Additionally, several of the websites on this blog can direct you where to seek appropriate counsel. However, nothing posted on this blog should be seen as an exhaustive list. These are only places to start your search for appropriate counsel. This post is also only about personal preparations for your child. The following does not discuss state programs or opportunities for disabled adults. These opportunities vary by state and should also be addressed with your special needs attorney. Remember though that your child’s transition plan from their k-12 education should address adult state programs in enough time to access these programs before they graduate.

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Elise Ronan
The purpose of this blog is to document the practical and realistic approach taken over the decades to help our two sons grow, and develop in order become all that they are entitled to become as human beings.
Elise Ronan

Elise Ronan

The purpose of this blog is to document the practical and realistic approach taken over the decades to help our two sons grow, and develop in order become all that they are entitled to become as human beings.

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