'Ensuring the Future of Your Child with Special Needs'

We have discussed various aspects of future planning for our children and other family member with special needs and I know from my presentations that this is a HUGE issue for families around the Province. As well it should be.

As luck would have it, I came across a great video the a few weeks ago, entitled "Ensuring the Future of Your Child with Special Needs". Upfront warning: the video is lengthy BUT I highly recommend watching the whole thing - it will be well worth your time.

Although American, I would say it is at least 80% straight on accurate for families here in Nova Scotia. And, best of all, the presenters (there are three of them) all have children with special needs, in addition to the professional expertise (a lawyer and a financial planner) they bring to the table. This means that they often speak as parents and when they do - trust me, you WILL relate.

"Unfortunately, doing nothing is an action of its own because eventually the future 

becomes the present ... If we have not planned for that eventuality, it will come 

either way and we will have less time to do something meaningful about it."

~ Keith Coldwell, Failure to Plan

Given that the video is quite lengthy, I though it might be useful to break it down into a Table of Contents, if you will. So here goes:

1. Introduction
2. Set Up
3. Greatest Hindrance to Parents Getting Started
4. First Steps (14:15)
5. Five Steps to Plan:

• Letter of Intent 
• Special Needs Trust
• Advance Directives 
• Guardianship 

     6.  The Importance of Communication

If you are a regular reader of the blawg, you will likely be familiar with some of these terms but perhaps not all.

A Letter of Intent is not a legal document, per se, but rather a placet where you lay out everything you do for your child in the course of a day, as well as their likes and dislikes. Given the trauma that losing a parent can cause (and especially if your child is nonverbal and, thus, only able to make his or her needs known to a few select individuals), this document could prove a very valuable lifeline for your child.

We are all familiar with Wills, of course, and have had the importance of having one drilled into us. And yet I have no doubt that many reading this blawg may still not have one. Let me say this - as important as Wills are for the general population, they are even more important for families who have a member with special needs. And, as pointed out in the video, it is equally if not not more important to ensure that you have your Will drafted by a professional knowledgeable about special needs.

The American concept of a "Special Needs Trust" doesn't have an exact counterpart in Nova Scotia (or, I believe, anywhere in Canada), but the points made as to the importance* of such a trust apply equally to the Henson Trust (also known as an "absolute discretionary trust"). If anyone is leaving any money or property to your child (whether the person does so when they are still alive or upon their death), using either a Henson Trust or having the money deposited directly into the individual's RDSP is an absolute necessity.

Advance Directives - everyone should have a Power of Attorney and Personal Directive (there's that nasty "should" word again) but, as pointed out in the video**, in the right circumstances, these items should also be considered for our children once they reach the age of 19 years.** 

The importance of Guardianship in the right circumstances (a subject we have examined in a fair bit of detail on this blawg) is also discussed***.

And, last but certainly not least, the importance of communication between, not just all members of the child's family, but everyone involved in the planning jprocess. When it comes to individuals working in different professions, it is always important for the left hand to have some idea of what the right is doing.

And when it comes to family members - a great (but sadly true) example of a situation is given where, unbeknown to anyone, a child's grandmother has arranged for a large sum of money to given to the child upon her death. At the time of her death, the grandson had, for many years, been happily living in a residential placement where his care was paid for by the government. Sadly, the inheritance not only triggered a large bill by the state to pay back the funds it had previously expended, but also made the grandson ineligible for the residential placement.

So how do you make proactively make sure such situations do not occur? Well, first you watch the video. Then you implement their concept of a Family Care Notice.

And there you have it, the five steps involved in special needs planning. 

I welcome your questions and any comments you may have on the video.

* The video refers to government benefits being broken down into two pieces - SSI and Medicaid. In Nova Scotia, the government benefits to be referenced in place of SSI are those from the Dept of Community Services, be it from the Services for Persons with Disabilities or a different program. Medicaid issues are, of course, covered under our provincial health plan and thus not relevant to this discussion.

** The video refers to an advance directive as a single document, covering both financial and medical issues. In Nova Scotia, these issues are dealt with in two separate documents; namely, a power of attorney and a personal directive. 

***Please note that although the age of 18 is used throughout the video, the applicable age in Nova Scotia is 19.

"Unfortunately, doing nothing is an action of its own because eventually
 the future becomes the present ... If we have not planned for that 
eventuality, it will come either way and we will have less time 
to do something meaningful about it."

~ Keith Coldwell, Failure to Plan