A Cautionary Tale: If I got hit by a bus tomorrow…

By Leslie Broun

One Sunday morning in March, I received a phone call. My best friend, Gertrude, had died in the night. Megan, Gertrude’s daughter, had found the body that morning. Megan has Asperger’s syndrome and at the age of 27, her adaptive functioning levels place her in the eight to eleven year old range. When the police arrived, she was in an hysterical state, threatening to kill herself. She was restrained, put in an ambulance and taken to the hospital. That evening, she was finally seen by a psychiatrist who, after a five minute interview, deemed her fit to go home.

Over the next twenty-four hours, Megan tried to kill herself with any tool or substance she could find. Staying alone at the house with her, I literally had to chase her from room to room either to clean up vomit or to hide anything that could be used as a tool with which she could hurt herself. Finally, I knew then that I couldn’t handle this alone anymore. Megan’s respite worker arrived and, under the pretext of going out for a coffee, took Megan to a different hospital where she was admitted and put under suicide watch.

After two weeks in the hospital, it was arranged that Megan would go to a “safe house” where she would have twenty-four hour supervision. This was a time-limited arrangement (up to two months) and the clock was ticking: What would happen to Megan? Where would she live? How would we work this out?
Indeed, what would happen to Megan? This truly is a cautionary tale that I write in order to warn and advise parents of the absolute necessity for preparation in the event of their death. We hate to confront this issue, but I know that parents of children who have disabilities are tormented by wondering what will happen to their child if they die. Making a plan can save your child from the possibility of an unpleasant and deprived life experience.

Gertrude had taken good steps to ensure that, should anything happen to her, there would be financial resources available for her daughter’s on-going care:

  1. She had composed a will and had it legally written and registered with a lawyer.
  2. The will included provision for the creation of a Henson Trust.  In Ontario, a Henson Trust is a legal and financial construct that ensures that an individual with a disability can receive an inheritance without it interfering with the receipt of their government-issued disability pension. Across Canada, provinces have different inheritance regulations for persons who have disabilities. It is critical to check into one’s provincial laws regarding inheritance and, whenever possible, to work with a lawyer who is familiar with the execution of inheritance laws as they pertain to persons with disabilities.
  3. Years ago, Gertrude had taken out a large insurance policy naming the Estate of Gertrude Horthy as beneficiary so that the money would be able to go directly into the Trust.
    1. Depending on provincial estate laws, find out how the beneficiary should be named.
    2. Consult an insurance broker for whether term or whole life insurance would be the wiser plan.
    3. Check to see if the policy can be released before probate of your will and make sure that your executor knows the status of the policy and its worth.
  4. Gertrude had taken out RRSP’s* every year, which also have gone into the Henson Trust.

Beginning in 2009, the federal government has given citizens the option of saving money through a Registered Disability Savings Plan (RDSP*), a savings plan that is intended to help parents and others save for the long-term financial security of a person who is eligible for the Disability Tax Credit. http://www.cra-arc.gc.ca/tx/ndvdls/tpcs/rdsp-reei/menu-eng.html

*It is important to check the tax implications for all of the financial provisions that pertain to an individual with a disability.”

There are many parents of individuals with disabilities who are not literate in English, who are not affiliated with organizations and who may not know anything about making a life plan for their child in the event of their death. Whenever possible, share this information with persons who need to know.

The Role of Trustee and Executor

As executor and trustee, I initially understood very little of what was expected of me. Fortunately, I am retired and had time available to work on all the business, legal and “Megan matters.” For weeks, I sorted through papers, studying and filling out the many forms involved. There were some things that Gertrude could have done that would have made my job much easier:

  1. Ensure that the executor of your will and the intended guardian your child have a complete understanding of the nature of the child’s disability.
    1. a.Prepare a profile of your child and update it at least once a year.
    2. b.Collect and copy critical documents, such as psychological assessments, medical reports, adaptive functioning assessments.
    3. c.Include several key articles about the disability and discuss its implications for relationships and independent living.
    4. d.Include contact information for the child’s doctors and medical concerns beyond the primary area of disability, such as diabetes or medications, as well as a list of the agencies with which the child is associated.

    The selected executor, trustee and/or guardian must have a full understanding of the expectations of the role. You must accept that with this understanding, they may choose to opt out. Better that than they find themselves, after the fact, in a role for which they are not prepared and cannot continue.

  2. We usually think about our financial affairs as being private – for our eyes only; however, when we have a child who has a disability, it is critical that we keep the intended guardian and trustee fully apprised of our finances (debts & assets) and where the information is kept.Ideally, an envelope or box with copies of all documents, including the will and information about the child, should be kept in a safe place that is known to the family and particularly to the executor.
  3. After two difficult experiences of having Megan live away from home, Gertrude created an apartment for her in the basement of her house. She took Megan’s name off the waiting lists for other housing arrangements.Never take someone’s name off a waiting list. When you put your child’s name on a registry, you may be asked to give a timeline of when you think your child will be ready to access a more independent living situation – two years, three years? There are no guarantees, but this information helps agencies determine their placement schedule. If your child’s name comes up, you are not obligated to accept a placement. You can say no and their name can still remain on the list.

The ultimate goal is to ensure, to the extent possible, the future security of your child who has a disability by the creation of a will, a Trust (where possible) and a plan.

Once a year, meet with those people who would be instrumental in the execution of the plan to discuss any changes to your situation. Let them know your hopes, dreams and wishes for the on-going development of your child. And, on a practical note, make sure that they know where to find your documents.

What Happened to Megan?

The agencies with which Megan was involved were incredibly supportive, but bottom-line: There were no “beds” available. However, Megan’s temporary placement in the safe house gave me the breathing room I needed in which to discover where we stood financially and research alternative placement options, such as private group homes.

Fortunately, Gertrude had a broad network of friends. In the end, a wonderful couple from her church stepped forward and volunteered to consider becoming Megan’s associate family, a construct that can be facilitated through an agency such as Community Living. After two weeks of deliberation and discussion, we came to an agreement and signed a contract. The associate family moved into Gertrude’s house and Megan very happily returned home.

I urge you to make a will and a plan for your child who has ASD or other developmental disability so that your family is prepared and protected in the event of a calamity. Preparation of documents and financial planning for the future of your children may sound time-consuming and difficult, but it’s not. Take the step. Get it done. Your child’s life depends on it.

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