A little less convenience goes a long way

I remember hearing a show on CBC radio one evening where they were talking about a ridiculously fit, healthy and long-lived group of people living somewhere in a rural part of Europe (maybe an island?) who were the subject of a study to examine the secret to their longevity. I recall that the researcher described a very rural, challenging, life, where simply getting through the day required a significant degree of physical effort. Without electricity, many household chores were done by hand, entertainment involved gathering as a community (an activity that involved a lengthy walk), and so on. He contrasted this existence with our comparative life of ease, where we routinely drive to and from work (or the gym), buy prepared meals, use remote controls to access our entertainment or, increasingly, carry it around in our pockets in the form of smart phones. For most of us, there are few opportunities for natural exercise, and all too often we actively work to conspire against those opportunities, choosing the comfort and convenience of the car. The researcher said something to the effect that it wouldn't be necessary to recreate the physical environment of the people being studied to gain some of their benefits. He commented that making it just a little harder to get your snacks (having the kitchen on a separate floor from the rec room) or seeking out even slight inconveniences (taking the parking spot farthest away from your destination) would be helpful..

What does this have to do with life with someone with a developmental disability? I'm sure I'm not the only parent who has many, many strategies for making things convenient for my son (and, not coincidentally, for me too). Whether that means ensuring that some situations never arise or smoothing over those unexpected bumps in the road, I unconsciously go about daily life with at least part of my brain attempting to anticipate and deal with inconveniences, changes in routine, or situations that will cause stress or distress. I even notice that I do it to facilitate things I don't particularly want my son to do, which is pretty stupid when you think about it: how much effort did I just expend trying to get an outdated computer game working on his newer laptop when he plays that game way too much as it is?

So I've been trying to move in a different direction, to make things just a little bit harder. One example of making things difficult with a purpose was how I managed to ensure he got in the habit of calling me when he arrived home from school or program to an empty house. The trick? I simply hid his beloved Nintendo DS. Inevitably he'd call me to ask where the DS was, and eventually this turned into him automatically calling when he got home, even when he was no longer looking for that device. He still mostly calls when he wants something, or wants to tell me something, but the habit was formed by making his life just a little bit more difficult. I also strive to let him make his own decisions, to feel the pain of not being able to buy a new DVD because a few days before he chose to spend his money on a different one. Is this often painful for me too, if only because of his complaining and often anger? Of course it is, but I have also observed how each instance makes him just a little bit more flexible. I remember years ago attending a Geneva Centre symposium and hearing a presentation by a young woman with ASD: she said something like "We have to hear 'no, it's not time for that' or 'no, it's her birthday'  or 'not right now', so we can learn that these uncomfortable situations aren't permanent." In our house we call this "making D uncomfortable/unhappy" and yes, sometimes there is yelling and door-slamming and misery (occasionally on both sides), but when we get to the other side, it was inevitably worth it.

Preparing for adulthood - at age 18

WHAT: Get your child a provincial photo card.

WHY: When they no longer have a student ID card, and if they do not have a driver’s license, this can be a useful form of official identification.

WHAT: If your kid has a bank account (alone or jointly with a parent/guardian), check on the details of that account and talk to the bank about alternatives and options.

WHY: Many bank accounts are free for school-aged children and teens, and these may convert automatically to a different fee structure on your kid’s 18^th birthday. Sadly, Canada has no policy that requires banks to offer no-fee or reduced-fee accounts to people with low income. Take the time to educate your banking staff about the limits placed on people receiving ODSP and work with them to come up with a solution that won’t have your kid’s income, which on ODSP is already well below the poverty line, further diminished by banking fees. In my experience, BMO in particular is a bank that has worked hard to be ASD-friendly, and our local branch demonstrated a commitment to find a way to continue a no-free account, at least for now.

WHAT: Help your kid apply for ODSP

WHY: Your kid’s entitled to, and is going to need, the money. Note that the earliest you can apply is six months before your kid turns 18, and an early start is useful. You will need to have a physician involved, so be sure to give your doctor some advance notice.

WHAT: If you live in Toronto, put your kid on the list for Toronto Community Housing.

WHY: They might not be offered housing for many, many years, but it’s better to be on the list and turn it down than to need it and never be on the list. Note that this can be done at age 17.

Adapted programs for post-secondary education

Here are some Ontario colleges that offer CICE (Community Integration through Cooperative Education) programs.

• Fleming College (Peterborough,Lindsay, Cobourg, Haliburton)
• Humber College (Toronto West)
• Lambton College
• Durham College (Oshawa)

Preparing for adulthood - at age 16

WHAT: Contact Developmental Services Ontario and begin the multi-step process necessary for your child to ever receive funding or access to funded services. I’ll have lots more to say about the DSO process in other posts.

WHY: It won’t be fast, and it won’t be easy, but it’s necessary.

WHAT: Begin serious thoughts about life beyond high school. If your child is in a regular academic program and may be pursuing post-secondary options, explore those options: your school’s guidance staff should be able to help. If your child is not a candidate for post-secondary schooling, see the post on practical transition planning for people who need ongoing supports.

WHY:  This is a long and emotional process for everyone. Of course you should start it before age 16, but better late than never.

WHAT: Talk to your kids’ healthcare providers (doctor, dentist, eye doctor, etc.) to make sure they’ll continue care into adulthood or will refer you to someone else who will. If you will need to change providers (for example, your kid is seen by a pediatrician), plan for this transition by visiting the new healthcare provider, possibly without your kid along, to assess how suitable they will be to caring for your kid. If your own doctor is not accepting new patients, see if they have a policy (as my doctor has) of making an exception for family members of current patients.

WHY: This is an important part of transition planning, and you need to build in time for your kid to meet the new provider and get comfortable with them.

WHAT:  Start submitting income tax for them (even if they don’t have any income).

WHY:  A history of their income is useful when establishing an RDSP, and the RDSP government contributions for an adult are based on their income, not your family income; once they turn 18 they will begin receiving quarterly HST rebates, a small but welcome amount of money.

WHAT:  If you haven't already done so, get your kid a debit card and teach them how to use it. (To be safe, you might want to tie the debit card to an account where funds are limited. In our case, ODSP funds go directly into the chequing portion of our son's bank account, and I transfer funds as necessary into the savings portion for access through the debit card.) And of course check with your bank to be sure you understand any transaction fees for debit.

WHY:  Although understanding money is a vitally important skill, most young people use debit cards for routine purchases, and it's very useful to know how to use one. (In our case, we still require our son to use his saved-up cash for optional purchases like DVDs, and have him use the debit card for groceries and other required purchases.)

WHAT:  Begin to understand Ontario's rules for capacity and decision-making.

WHY:  You need to get used to the idea that in two years when your kid turns 18, they will be considered an adult. Period. I hope to write a post in the future about this issue, from a parental (not legal) perspective.



Also see the pre-age 16 post. 

Preparing for adulthood - before age 16

Starting as soon as you can bear it, but preferably before age 16 (perhaps when your kid enters high school), here are some practical activities you might consider.

Some of these are easy, some of them are hard, most of them will take that precious commodity we call "time". And no, I didn't do them all, but I don't regret the time it took out of my life to do them, just that I didn't do some of them early enough.

WHAT: Give serious thought to who is in your kid’s life. Make as broad a list as possible – your kid’s hair dresser, the guy at the gaming store, that great EA from school, the summer camp helper, a friendly neighbour, volunteers at community programs your kid attends, classmates and team-mates, etc. Make a conscious effort to ensure your kid is in circumstances where that list can grow, whether that be through participating in more extra-curricular activities,  joining a group or club,  joining a church or other religious organization, volunteering in the community, etc.

WHY: Professionals and para professionals can help you develop a circle of support, but they’ll rely in part on your identifying people your kid already engages with. And even if you don’t get help developing such a circle, the people on your list are valuable resources you should be aware of.

WHAT: Make a will, including provisions for a Henson Trust and naming a guardian for your kid, preferably working with a lawyer who has experience in this area.

WHY: Life doesn’t always progress as we think it will. It’s not a fun exercise, but it’s a necessary one. Note that guardianship is a tricky issue for dependent adults.

WHAT: Take a look at your employment situation.

WHY: Depending on the level of support your kid will need and your family, financial, and community resources, you may need some flexibility in your work schedule, particularly during the time of transition from school to life.

WHAT: Get your kid a passport.

WHY: It’s a useful piece of formal identification, especially for those who may not get a driver’s license. Note that for purposes of passports, an “adult” is 16 years old.

WHAT:  Get your kid a SIN.
WHY: It’s needed for the RDSP and/or for submitting taxes and receiving ODSP, if they qualify, when they turn 18. 

WHAT: Consider starting an RDSP.          

WHY:  It’s an important way to help secure your kid’s future. Note that I say “consider” because, in my circumstance, we chose to delay opening the RDSP until my son was close to turning 18: since his income is taken into account for the RDSP rules, that means he is getting the maximum government contribution. Consult an expert to make sure you’re making the decision that’s best for you. It was our experience that opening the RDSP before 18 was somewhat simpler, and the parent(s) can remain on the account once that 18th birthday comes.

WHAT: Start teaching your kid to buy and prepare their own food.

WHY:  If your kid qualifies for ODSP when they turn 18, the ability to buy/prepare food can be used to support the claim that they qualify for the “shelter portion” of the funds (assuming they pay you some form of rent while remaining in the family home), which provides them with more money.  Plus it’s useful for life in general.

WHAT: Track down a copy of Connections:  A Guide to Transition Planning or one of the other documents mentioned in the transition planning resources post of this blog and do some of the things those documents recommend.

WHY:  Information in the Connections book about accessing services is out of date, but the rest of the document is very helpful and timely. Lots of checklists and concrete actions you can take.

WHAT: If it’s been a while since your kid had a psychological assessment, ask the school to have one done.

WHY: A current assessment might be necessary to have them deemed eligible for adult supports, services and funding.   

WHAT: Get a sense of your kid’s abilities outside the academic domain (life skills, employment skills). Some of the transition resources in the transition planning resources post in this blog have checklists, and there’s an entire post about skill assessment tools too.

WHY: As parents it is difficult to recognize what our kid can and can’t do outside the domain of school. Having neutral checklists can make the task easier

WHAT: Begin giving your child as much responsibility as possible, including participating in all sorts of decision making that relate to their life (what kind of sandwich to eat for lunch, which shirt to buy, the order in which chores are to be done).

WHY: Particularly for those of us who parent a kid with numerous challenges, it is all too easy to fall into the trap of expediency, doing things for them, making decisions for them that seem routine and harmless. However, it’s difficult to promote independence in someone who hasn’t been given the opportunity to make decisions, and live with the consequences.

WHAT: Help your child become more money-aware. Pay them for household chores or, if you disagree with this approach, find some other way for them to earn money. Set some basic rules for funds received vas gifts: a portion to savings, a portion to savings (and a portion for charity, if you’re so inclined).  Look for opportunities for them to save money for a desired object or item.  As a bonus, if my experience is anything to go by, nothing teaches math skills like a strong desire to buy something for which one has to save.

WHY: The ability to handle money is critical to independence. As with decision-making, we sometimes fail to allow our kids control over their own funds, even if that means they learn some hard lessons: better those lessons are learned young, when there are lots of supports in place.

WHAT: Figure out a way to judge the amount of support your kid needs (1:1, 1:3, 1:5, 1:7, 1:12, etc.). If you can find a way to test this, through community programs, do so.

WHY: The less support they need, the more (and less expensive) the programs available to them as an adult. It’s better to be aware of the challenges now than to be surprised later. Also, this information will be used to match up your kid with funded programs. (To be explained in later articles about the DSO.)

WHAT: Apply for the Disability Tax Credit.

WHY: Even if you feel that as a parent you don’t need or want this credit, it’s a precondition for your kid applying for an RDSP and, once they turn 18 but remain a dependent, allows you to take advantage of ongoing tax credits. Warning: I have no legal or financial experience or training and, by some standards, am pretty much innumerate. Consult a professional.

WHAT: If you live in Toronto, acquire the TTC Support Person Card.

WHY: It allows you or another adult to travel free with your kid. This is, among other things, enormously helpful for TTC training purposes.

WHAT: Review the recreation and other activities, including Parks and Recreation, your kid participates to see if they have any age cutoffs/restrictions and, if necessary, seek out alternatives that will span the teen and adult years.
WHY: In my view, the only secret to successful transitions is to change things a little at a time. The more things you can keep the same after 18 (even if they have to change at age 21), the easier it will be for your kid. 

NOTE: You will notice that “talk to your school about transition planning” is not on this list, although legally your kids’ IEP has to have a “transition planning” page on it once they turn 14. In my experience, schools have enough trouble educating our kids appropriately and although in a perfect world they would have much to contribute to the transition process, that’s not a world I’ve ever visited, let alone lived in.