How to Face the Uncertain Future as a Special Needs Parent 2

How to Face the Uncertain Future as a Special Needs Parent

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There are many things in life that I can face with confidence. In fact, I don’t have many overwhelming fears or phobias. Maybe the same as a few others. I’m not a big fan of heights, open spaces, or large crowds. Other things I don’t mind quite so much. Slugs will send me running in the opposite direction. But there is one thing that scares me more than slugs, heights, large crowds, and open spaces combined. It’s the uncertainty of my autistic daughter’s future. It’s enough to keep me up at night. And it’s one of the few things in life that I cannot predict or control. But now, with thanks to Bloomwell for sponsoring this conversation, I can at least have some peace of mind.

The uncertaintity of my autistic daughter's future frightens me. But now, thanks to Bloomwell, I can have some peace of mind.

Please note that I am not an attorney and I am not authorized to give you legal advice. The contents therein do not serve as legal advice, merely as findings from a parent.

The Uncertain Future of Parenting an Autistic Child

With many children, parents are certain or at least have a good idea, of what their child is going to do in life. The same doesn’t always hold true for autistic children. Though you shouldn’t count them out for anything. Given the right environment, they will thrive and grow. They will surpass all of your expectations and preconceived notions.

My daughter just might do that at some point in her life.

But until she does, I want to make sure that her future is taken care of.

How can I do that though?

Well, I start this process by looking into the steps to take. Things like housing, money, assistance on a daily basis; things that are already in place. I want to make sure that those will still be in place and that she will be provided for.

I’ve looked into setting up a trust, or making a living will. But I also knew that with my limited legal knowledge, there wasn’t much I could do beyond looking into these things.

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Why all Special Needs Parents Need a Living Will

Illness, severe injury and death are delicate subjects that are not easy to talk about. The main thing though is that by preparing in advance you can make sure that you receive the kind – or extent – of medical treatment you want.

If you want to take full advantage of the benefits of living wills, you should at least have a serious talk with your family, your close friends and your doctor. The most excellent approach would be to discuss these matters in a reassuring and factual manner.

The important conversation should include your philosophy about health care and the things you would want done in certain situations. In case your wishes are faced with intense moral opposition from your immediate family and/or friends, you may consider selecting or appointing someone more in line with your point of view as your health care surrogate. In this way, you will be assured that your surrogate will make decisions that are in accordance with your beliefs.

On the other hand, if you want to speak to your family or friends with the proposition that they also create a living will, be sure to prepare a good explanation to back it all up. You should put in plain words the importance of planning ahead and how these documents could be of assistance in very bad situations.

Without living wills, families could be torn apart and wrecked emotionally while trying to reach a consensus about what would be best for their seriously ill loved one. If this possibility seems unbearable for you to picture out, then make your mind up about whether to create a living will or not. You can never tell what will happen to you a year from now, next month, or perhaps tomorrow. So you might as well be safe than sorry for not making the right choice as early as possible.

Taking Care of the Paperwork

Since these documents are supposed to be legally binding, make sure that everything is put in writing. Every state has its own set of policies regarding this matter. The law in one state, concerning living wills, may not be consistent with that of another state.

You can get hold of the proper forms through your doctor or your health care provider. You can also visit various sites on the Internet to procure state-specific forms, complete with instructions on how you should properly fill them out. In addition, a variety of organizations – such as the National Hospital and Palliative Care Organization – also offers appropriate living will forms that are free of charge.

Then again, if you don’t mind shelling out some cash, you may seek advice from an attorney about this matter. This can be a wise move, especially if you have plans of transferring to another state – with a different set of rules concerning such legal documents.

Once you have completed the proper forms, hand copies of the living will to your immediate family members, friends, and family doctor. If you have appointed your own health care surrogate, don’t forget furnish him or her with a copy as well.

On no account should living wills be stashed in a safe deposit box. Doing so will only make it harder for your loved ones to get hold of the document when the need arises.

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What exactly does a Living Will do?

The concept of living wills may not be very clear to a number of people. Some may even equate it with the “last will and testament”, which is a totally different type of legal document. In point of fact, a living will is more analogous to a “power of attorney”.

Its primary purpose is to make it possible for you – the maker or owner – to formulate decisions in advance with regard to medical treatment or life support, and lawfully command the health care team to carry out your wishes in that regard.

Because of the presence of numerous advances in the field of medicine and health care, doctors are now capable of sustaining life – even if it means being in a permanently vegetative condition. This is one of the reasons why living wills have become such a necessity.

Not all people actually like the idea of remaining in an almost lifeless state for an indefinite period of time. More often than not, the notion of extending life even when death is just round the corner seems excruciating for both the family and the patient. It’s like one way of prolonging the suffering.

A living will makes it possible for you to decide whether life-sustaining measures and medical treatment should be continued or withheld. The directive may also include the refusal to take artificial feeding. Aside from that, you may even express other specific wishes before you become incapacitated to make decisions for your health care.

In order for the living will to be legally binding, the appropriate form must be utilized and it must be accomplished in conformity with the state laws on the subject of living wills. A number of states require the presence and signatures of two valid witnesses, the attendance of a Notary Public, or both.

In case the living will form necessitates the appointment of a patient advocate, he or she must not be any of the two witnesses. Your advocate should carry the burden of deciding for your health care and medical treatment in the unfortunate event of your incapacity to make the decision for yourself.

This person is also known as a health care representative. He or she may be a spouse, a daughter or son, a family member, a friend, or any significant person that you absolutely trust.

In essence, a living will becomes effective when the creator is no longer capable of making decisions with regard to medical treatment. It may be in the face of a terminal illness, permanent unconsciousness or coma, inability to communicate, mental incapacity, or vegetative condition.

In the event of any of these situations, the health care provider – a hospital, a hospice, or a nursing home – must be provided with a copy of the advance directive. The instructions contained within the legal document will serve as the basis for the continuation or withdrawal of medical treatment and other life-sustaining procedures.

The health care team, specifically the attending physicians, is legally bound to follow the directives indicated on a living will. However, although it is considered a legal document, the maker may revoke or change the contents of the will provided that it is carried out prior to becoming debilitated.

On top of that, the proper procedures for the revocation of living wills should be followed to make the act official.

What is the difference between a Living Will and a Living Trust

The two terms living will and living trust may seem a bit vague. Oftentimes, people may even use them interchangeably. However, you have to understand that a living will is certainly different from a living trust. Although both may share a number of similar characteristics, you have to know their exact definitions for you to be able to fully utilize them to your advantage.

Living Will

It is a legal document that states your wishes regarding health care decisions in the event of an unfortunate occurrence such as a terminal illness or a permanent vegetative state. This form of advanced directive will only take effect once you have shown evidence of incapacity to participate in the decision-making process with regard to your medical treatment.

Basically, the policies that govern the making and application of living wills are based on state laws concerning the matter. The statutes may hold differing views from one state to another. So be sure to follow state-specific procedures to avoid conflicts since this is, after all, a lawful document.

Other states may not have particular laws pertaining to living wills. Then again, you may take advantage of the option to appoint a health care surrogate in case you become too ill to participate in making health care decisions for yourself. As the name implies, your surrogate will act and decide on your behalf under the mentioned circumstances.

Living Trust

In essence, a living trust is a written lawful document that partly takes the place of a will. It allows you to place all your assets (i.e. residential properties, bank accounts, or stock shares) in a trust to be administered to your advantage for as long as you live. In the unfortunate event of your death, all your properties will be transferred under the names of your beneficiaries.

Most people opt to appoint themselves as the trustee in command of supervising all the assets of the trust. In this fashion, you can still be in control of your properties even though they’ve already been put into a trust. On the other hand, you may also assign a successor trustee – either an institution or a person – to administer the trust’s assets in case you become unwilling or incapable of performing your duties.

So basically a living trust guarantees that your assets will be handled according to your preferences – that is if you become incapable of managing them yourself. In setting one up, you may initially want to serve as its trustee. However, it would be best if you also select a successor trustee while you’re still of sound mind to make the decision.

The trustee may take over the management of all your assets under the mentioned circumstances. And in case you pass away, the successor trustee you have appointed will act similarly to an executor of a will.

The usual functions will include gathering your assets; paying any remaining debts, taxes and claims; and distributing your properties according to your orders. Then again, unlike a will, all of these tasks may be carried out without court approval or supervision.

In comparison to a living will, a living trust is not normally considered a top priority and not everyone would benefit a great deal from it. For instance, a young couple without kids and noteworthy assets do not require the creation of a living trust. People with uncomplicated estate plans may not gain much from it too.

On the other hand, wealthy individuals who prefer court supervision for the management of their estate should steer clear from living trusts.

So you see, a living will and a living trust definitely differ in a lot of ways. The first is usually appropriate for almost anyone, while the latter is typically viewed in a case-to-case basis.

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Kori

Content Creator at Kori at Home
Kori is an autistic mom who also happens to have ADHD and Anxiety. She is currently located in Albany, NY where she is raising a neurodivergent family. Her older daughter is non-speaking autistic (and also has ADHD and Anxiety) and her youngest daughter is HSP/Gifted. As an empath, HSP, and highly intuitive individual, Kori brings her own life experiences as an autistic woman combined with her adventures in momming to bring you the day-to-day of her life at home. Kori provides life coaching services for neurodivergent women (and those who identify as women) as well as Oracle card reading, Tarot card readings, and energy healing.
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