Summertime!

Recalculating

Alex was born happy, advanced in her milestones. Brilliant parent that I am, I had her educational savings account opened immediately, because she was destined to surpass us all. Wrong - completely wrong destination. At the age of three she had a sudden febrile convulsion due to an ear infection, which developed into her first extended status seizure. She went to the hospital as one child with an apparent destiny, and came home permanently brain injured. That sparkly destiny evaporated into the atmosphere like the droplets of rain on a blazingly hot summer day. No time to grieve – it was time to recalculate the destiny.

The brain injury left her with life-threatening status seizures, severe behavioural issues, damaged motor functions, developmental delays, “perseverant thoughts”, and she was now on the autism spectrum. She was out of control behaviourally. She would bite people, kick holes in walls, lie in the middle of the road when out for a walk, and engage in kamikaze power struggles no one could be prepared for, because these new rules were alien to us.

Eventually, we hit on behaviour management strategies which led to some small advances. It was like having to relearn everything after a stroke. We had no time to address things like autism or OCD or anxiety. It was all about severe behaviour and trying to teach her functional things, like the idea that stabbing her classmate in the leg with a sharp pencil may not be the best way to obtain their attention, or that grabbing the bus driver in a bear hug around her neck while driving was dangerous. She was fearless, she was indecipherable, and her behaviours isolated us. And every time she had another status seizure, we started over from scratch.

At the age of six, her doctor put her on anti-seizure medications that halted the seizures. Great, now could we make some progress? Nope. “Perseverant thoughts” exploded into severe Obsessive Compulsive Disorder when she hit puberty – unfairly delivered at the age of eight. Her compulsions were so severe she would do anything, including hurting people, if necessary, to satisfy these overwhelming urges.

New meds were prescribed at twelve. All of a sudden, the severe behavior evaporated in the same way the sparkly destiny had evaporated. And with all this other stuff under control, Alex finally started learning. She earned awards, made friends, and learned to read and count well enough to play a competitive card game she was passionate about. She had goals, dreams and a future. She wanted to have a job and earn money like adults do, and she volunteered and belonged to two leagues. She pushed her social skills, took classes, worked on hundreds of applications. When she finally added two part-time jobs to her life, she was indescribably happy. She didn’t understand money, so it wasn’t about that. It was about having value and a purpose. She had independence to the point where she could safely come home alone, tend to her own needs, entertain herself, plan her next deck for the Pokémon League, and indulge in her passions. We planned for her to own her home to share with roommates of her choice. There were savings, investments and trusts established to guarantee she could live in the community, because that’s what she wanted.

But out of nowhere, as we were getting ready for Pokémon league on a Saturday in June, 2014 – our typical Saturday activity – Alex suddenly grabbed her ears, face scrunched in pain. People were literally screaming from inside her head. Out of nowhere, without explanation, psychosis erupted. An unwelcome intruder: “The Thief”.

Continued next month

The last article I wrote was about the Disability Tax Credit. I hope it was useful for some. The next thing I'd like to talk about is the Registered Disability Savings Plan. In order to qualify for an RDSP, one first needs to qualify for the Disability Tax Credit (DTC). Once you receive approval for your DTC, you are entitled to set up an RDSP. The RDSP has a few benefits, the largest of which is the grants and bonds that the federal government will put into the RDSP on the beneficiary's behalf. The amount provided is based on income, but it is still beneficial to those in all income brackets. In order to receive the grants and bonds, the beneficiary needs to be 49 years of age or younger, and the government will stop making contributions the year the beneficiary turns 49.

It's also important to understand that this is a program designed for savings for the future, and is not meant for the short-term costs of managing the disability. Once the grants and bonds have stopped being deposited, one must wait a full 10 years before any withdrawals to avoid penalty. If even $1 is withdrawn before that time, all grants and bonds that were paid into the plan must be repaid, so it is certainly to your benefit to leave it alone. You can, however, invest that money into things like stocks and bonds, mutual funds or term deposits in the meantime.

The RDSP may not help cover short-term expenses, but planning for the future is important too. Based on a person's income, the government will deposit up to $1000 each year in the form of a bond (the Canada Disability Savings Bond). The amount of the bond depends on the annual income of the family and can reach a maximum of $20,000 over the lifetime of the beneficiary. There is also the Canada Disability Savings Grant, which could take a yearly contribution of $1500 and boost it by another $3500 up to a maximum of $70,000 over the beneficiary's lifetime.

The money that is put into the RDSP by the beneficiary or their family is not tax-deferred, so unlike RRSPs, they do not offer a tax benefit at the time of deposit. The money that the government deposits as well as any earnings from investment is also taxed, but is taxed at the time of withdrawal. This is rather complex, but a good financial advisor will walk you through how that process works. What people need to know is that the money will be there when their family no longer is.

The sooner the RDSP is set up, the more benefit it will provide. It is also worth noting that for people that are in receipt of AISH, this is considered an exempt asset (since you can't access it) and all payments from the RDSP, when the time comes, are also exempt. So, AISH will not claw back benefits as a result of an RDSP. And even though AISH has an asset limit of $100,000, individuals above the limit can put their additional assets into an RDSP and still qualify for AISH. For some, this could be reason to open an RDSP after the age of 49. For example, if the person with a disability were to inherit a substantial amount of money, that money could be placed into an RDSP and it would not have an effect on AISH benefits. And because no grants or bonds were paid into that RDSP, the beneficiary is then able to withdraw that money without any effect on their benefits with AISH.

I could go on and on about the RDSP, but in the interest of time and space, I will end there. Certainly there is a lot of information available about how this program works, but my goal today is just to make people aware that such a program does exist so they are able to take advantage of it.

BJ Clancy is the founder of the popular Disability Tax Credit and RDSP Facebook group. In this group, BJ and other volunteers can give you the information you need to successfully apply for both of these programs.

From the Autism Awareness Centre Inc. blog:

Becoming an independent adult with ASD involves a large skill set that needs to be planned out over the lifetime of your child. I recently posted an article on establishing clear guidelines around sexuality early on. Money management is no different. Being able to pay for items and stick to a budget is a barrier to successful independence. Many people – even those without autism – can’t manage finances or handle money responsibly, directly impacting their quality of life, and ability to live on their own.

A recent study, “Financial Capabilities Among Youth with Autism Spectrum Disorder,” was conducted through the University of Missouri and was intended to shed light on exactly this issue. The study was conducted by interviewing youth with ASD between 16-25, and found that most individuals not only recognized that financial understanding was an essential part of being independent adults, but also felt very frustrated with their money management skill-set, or lack thereof.

 

Money management is not seen as an important part of the curriculum for ASD children
 

While most of the early years for children with autism are spent in all kinds of therapy and lessons, most of those are around verbal or reading literacy, and normalizing behaviours. For most children, no time is spent at all learning about money.

“Despite the importance of financial autonomy and the increased independence that comes from understanding money, financial management and decision-making often are seen as outside the purview of professionals working with young people with autism,” said Clark Peters, co-author of the study and associate professor in the MU School of Social Work. “Educational programs that include financial literacy in both schools and independent living programs could increase autonomy and quality of life for people with autism.”
 

So how can we help those with autism learn to manage money?
 

As with learning anything when you have ASD the more ingrained it becomes at an early age, the better. It would be excellent if educational institutions recognized the importance of financial planning and incorporated it into early education programs. Until then, parents can help by addressing money as early as possible, just like any of the other life skills you want to help your child develop.

Regions Bank in the United States recently announced its intention to make its 1500 branches autism friendly. Along with employee training, each branch will have a designated quiet area and sensory bags with items meant to help those feeling overwhelmed. There’s a green stress ball and earbuds to help block out sound. Hopefully more banks in Canada and globally will adopt these kinds of measures, but in the meantime here are some things you can do to help your child improve their money management skills.
 

1) Have your child pay for items at the store
 

If you have a quick errand to run, this can be a good time to start allowing your child to pay for small grocery amounts.

Tip for success: make sure it is a store the child knows and feels comfortable in, preferably with a cashier that your child has already met. Choose a time when the store isn’t busy so that neither your child nor other shoppers get frustrated.

2) Give your child an allowance and help them save up for special items
 

While there is some controversy around whether or not your child should be “paid” for chores, most sources agree that giving your child a weekly allowance allows them to earn their own money and begins the idea of savings and budgeting. The key here is to enable your child to come up with a “dream buy”, and then help them save for that item or experience.

Tip for success: try not to judge or influence your child’s choice of item that they want to save for. It doesn’t need to be practical or what you would like. The key here is to give them the inspiration to WANT to save, and then teach them the process of how to do it.

3) Set up a bank account for your child
 

Many banks have free accounts, or special accounts, for children. Helping your child set up an account at a young age allows them lots of time to become accustomed to how a bank account works. Even though many of us bank online, it’s a good idea is to start taking your child at a young age to the bank in person. Get the used to the building, process, and even the individual tellers.

Tip for success: choose banking times or hours when there aren’t many people in there. You can call the bank to find out when that might be. If your child has a favourite teller, ask if you can come in during that time.

Further Reading
 

Life Skills Activities for Special Children, 2nd. Edition

Teaching Math to People with Down Syndrome and Other Hands-On Learners: Basic Survival Skills – 2nd. Edition

Steps to Independence – Teaching Everyday Skills to Children with Special Needs

Introducing Aidan's Vlog

Aidan, a volunteer Office Assistant for Autism Calgary, has launched a video blog. In a series of episodes, he shares his thoughts on autism-related topics and introduces us to Autism Calgary's staff and their office. In one recent instalment, he talks about how people with autism are depicted in TV and movies, and how autism can sometimes be misrepresented in the media. To watch all of Aidan's vlog episodes, visit the Autism Calgary YouTube channel.