Hiring a worker

Added Feb 2023: this website (https://www.care.com) claims to provide access to support workers: when you visit the site you're asked a few basic questions and then are presented some candidates you can choose from. There's a fee involved. 

 

First and foremost, take the time to really think about both what qualities you are looking for in a worker and what responsibilities you want them to take on.  You also need to consider the environment in which the worker will engage with your loved one, for example, if they will be going to the gym you probably want someone of the same gender as your loved one. Shared interests are also important, in order to have a positive experience for both. Over the years I've hired people with extensive training and experience and people who've never been a support worker in their life - it really depends on how vulnerable your loved one is. Ask for and check references.

Do one interview without your loved one present, to get a basic sense of the candidate, then do a follow-up interview with your loved one involved. You might also want to negotiate a series of shorter engagements while you assess everyone's comfort level. I ask workers to keep a notebook where they write down what they did and any questions or concerns.  

In the old days, respisteservices.com was the best place to go to find a worker (see below), but it is much less active currently (2020). I have had success putting a classified ad in a local paper and posting ads at community centres. You might also be able to place ads at community colleges or universities. Ideally someone who lives in your general neighbourhood is good, not just because they will be familiar with the community but because you won't have to incur additional costs to pay for transportation (particularly during COVID where you might choose to pay for a worker to avoid public transit). 

Here's the process I generally follow when looking for a worker through respiteservices.com (which, as of 2021, is not the resource it used to be):

I look at the "worker classified ads" on the respiteservices.com website and ask to get the profiles of anyone that seems like a possible candidate. I also ask them to do a search for me based on my criteria (area of the city where I live, hours and days I'm looking for). That gives me a pile of profiles to look
I go through the profiles looking for things that give me some clues as to how close each candidate comes to my wish list. I read over the description of what they've done and try to imagine how that might relate to what I want them to do. For me, I'm less interested in formal training (because I'm confident of my training abilities) but I do like to see signs they've got some creativity and initiative (because I'm not going to be handing them a program to deliver). Because my son has no medical issues I'm less interested in someone with extensive experience with people who have a physical disability, suspecting (unfairly, I'm sure) that they'll be overly protective of my son. I write notes on the profiles and group them: one pile for people I'm not interested in, one for people I am interested in (and because I'm way too organized, I usually put that pile in order from highly interested to not interested at all). I ask my husband to go through the resumes too: a second opinion is very valuableI send an email to the people I'm interested in. I make sure my message covers all the main points: the location, the hours, the pay, the things the worker is expected to do, the environment (e.g. we have a cat), and above all a profile of my son. I keep it short and positive - I want to be honest, but I also want to attract people to the job. I ask people to let me know if they are interested and to send me a resume if they are.
I keep notes on the responses for future reference, even if someone says they aren't available (you really can't rely on the details in the profiles - nobody ever seems to go back and update them when their situation changes). This is very helpful if you need to hire someone again (which you will, for sure) - it saves time to know what they said last time you contacted them.
I set up an interview with my top choices. I prepare a list of questions (sometimes with specific questions for specific people, if I want to learn more about some education they have, or a work experience). I ask for references. I have found it best to time the interviews for 30 - 45 minutes before my son arrives home from school (or for a time when he's out at a program but returning in 30 - 45 minutes) - that gives me a chance to focus on the candidate first without distractions and then observe how they interact with my son (or, worst case, wrap up the interview and send them on their way before he gets home). Like with the profiles, I'm listening and looking for the things on my wish list. It's easy to get side-tracked with interesting things they've done and forget that those might not be particular relevant to your situation. I encourage people to talk about their philosophies and their experiences. I try to assess whether they'll deal with me honestly (not just trying to give the answer they think they should). I get references - and I call them and ask some specific questions, if I can. The biggest thing I look for is how they respond to my son when they meet him and how he responds to them.
I follow up with people who I interviewed (I never tell them in the interview if I'm interested or not - I tell them I want them to take time to think about the opportunity while I think about whether they're a good fit). I make an offer. I don't make them sign a contract or anything - I haven't had anybody just not show up, and unless you plan to sue someone for breach of contract, there's not much use in having one. That said, I do put the requirements (time, payment, requirement to register with Passport or whatever entity you use for claiming worker-related costs) in writing.
You might suggest a trial period of a month, at the end of which you and the worker can both decide whether to continue. You need to discuss and set up any resources the worker will need (for example, I have the worker keep a log book, and I leave notes in it about chores that need to be done, favourite foods, reinforcers, etc.). You might want to establish a schedule for the worker to follow or leave things open, but in a new engagement it's easiest if you give the worker some concrete tasks to engage your loved one in.

It can be hard for a worker to establish a relationship with a child when a parent is right there, but it can be equally hard to leave a vulnerable person with someone new. Some people monitor the home with a camera, which I don't feel is appropriate. You might choose to work from home a few days when a new worker is there. Bottom line: if you don't trust the worker, don't hire them, and be prepared to drop one if there are any concerns or warning signs. 

 

This is all very general advice, and your needs (and those of your loved one) will vary, but as a rule if you put in the work to find a good candidate, do a good job of explaining their responsibilities, involve you loved one in the decision, and do regularly check-ins, all should be well.

An alternative to tracking software

Thanks, I suspect, in part to the demands of the aging population, I've discovered an abundance of devices for tracking and locating vulnerable people, from items that clip on to clothing to something that you can put in the bottom of a shoe! Most work on cellular networks, and I'm sure more come out all the time. We have addressed the need to track our son's movements through using his cell phone because, like NT people of his generation, that darned thing is pretty much always with him.

Following the truly memorable experience of having him lost for a day (!) on the subway (he didn't leave the subway car all day, as far as we can tell, until it went out of service and he was forced off), we got him an Android phone. We also signed up for cell service from Freedom Mobile, which is the only provider that offers service on the TTC: although on-train service can be spotty outside the downtown core, if you get off a train and go to the Designated Waiting Area, our experiments have shown you can almost always get service. (Those locations are also adjacent to where the cab containing the subway driver is, so offer an opportunity to ask for help.)

We also use Prey (https://preyproject.com/), a free app with website that tracks the location of devices: and, as noted above, we're pretty sure that where his device is, that's where you'll find our guy. It can also send an alarm to the phone: presumably that's intended to help you locate a lost phone, but it's also useful for notifying the phone owner. Devon often travels with WheelTrans and although he often calls when he's in the cab, it's still useful for me to check up on where he is, how close he is to home, etc. I confess I sometimes also use it to see how much time I have left to write this blog before he arrives home from whatever outing he might be on!

We're also looking at putting an "I need help" audio clip on his phone that he could play in emergencies: we're worried about him being seen as a weird guy rather than someone who actually needs help, and he's very reluctant to ask for help under pretty much any situation. (Yes, we're working on that too, but it's tricky. I sometimes joke that we need a "friendly stranger" program where people we know and trust but that our kids don't know shadow them through potentially hazardous situations.)

Update: cleaning up some old email and found this article about using Google Maps, which could easily be adapted for tracking purposes:

Our latest approach to building independence and reducing nagging

In a busy four person household, it's easy for Devon to disappear to his bedroom or the basement for a little (OK, a lot) of time spent doing what he likes to do best, including watching his extensive DVD collection, often simultaneously listening to music or watching TV online or whatever. Nagging is unpleasant for all involved, but nobody in this family comes home from work and then just switches to family mode, both parents often have "work-work" to do in addition to all the regular household chores and responsibilities. Devon has a few scheduled activities and responsibilities in the evenings and on weekends, but we were still spending a fair bit of time nagging, and my husband and I often found ourselves stepping on each others toes and/or giving contradictory instructions.

After a bit of trial and error, we came up with the system I'm describing here. We've tweaked it numerous times, but I think we're close to getting it right (or right for us, anyway).

Here's a picture of the system, which is mounted on the door that leads from the kitchen to the basement (or as I sometimes call it, Devon's lair - and yes, he has a perfectly fine, even spacious, bedroom of his own which is apparently reserved just for sleeping).

The blue cards represent "Devon time", each card worth 30 minutes. There's a fixed amount of this time allocated per day. The white cards represent tasks that need to be done. At the top there are two other types of cards: one states the targeted skill (e.g. putting on sunscreen by himself) and the other is intended to represent which parent is sort of in charge for that day (this has not worked so well, but I'm hoping that's a temporary consequence of my husband's new job). 

Some cards have a single action item: "take vitamin", "drink water", "gather books to return to library" or several related action items (all the different tasks involved in getting ready for the day).. Some are daily, a few are day-specific. 

Originally all of the cards were very specific, but I realized that wasn't going to help achieve my goal. I didn't want to, for example, have to determine whether there was laundry to be washed, or whether the dishwasher needed to be emptied, and then put up the appropriate card. Instead, I wanted Devon to make that determination, so now we have cards that more generally list the tasks that are related to an area. The idea is to encourage him to first consider whether the task is needed at all by taking the time to check, rather than having him dash through the chore in order to get back to a desired activity, an urge which has led him to hang dirty laundry on the line or add dirty dishes to a dishwasher full of clean dishes. So the "kitchen" card includes "load or empty dishwasher" and "soak, wash or put away plastic dishes" (which we hand wash): he needs to identify which, if any, activity is needed and then do it. When the task is done, he moves it to the "done" column.

The cards are also helpful in reducing nagging. Devon may claim to have done all his morning bathroom routines, but if I hand him the card or direct him to it so he has to read through the list of those routines, he'll often recognize that there's one that he has missed. This removes the need for us to remind him. They also avoid the issue of having one parent direct him to an activity that has already been done with the other parent.

He's very print oriented so the text-only cards work: others might respond better to pictures (when I need visuals, I like to use the free Picto Selector (https://www.pictoselector.eu/) which offers a lot of low-detail images. 

For the 30 minute break cards, he can use more than one at a time if he wishes. He has a simple kitchen timer in the basement and another in his bedroom that he is supposed to set (they're loud enough we can usually hear them too). When the break cards are used up, that's it: we still get argument, but the cards give us a more neutral way to engage about the matter. (I'm a bit fan of pointing rather than arguing.)

Originally I created a single set of cards and each morning we had to skim through them and select the ones applicable to that day. That turned out to be a considerable pain, so instead I made a full set for each day, with a few seasonal cards as well. Sometimes we'll make a determination not to use a card (for example, there's a "Family walk" card that we might not put up if the weather is terrible, and a "play game" card that we might not use if the day is particularly busy with scheduled events). If it's a holiday or someone is sick, we may leave the chart blank. I'm sure the cards could be prettier, but they do the trick. 

Because my handwriting is appalling, and because we were doing lots of duplicate cards, I used Avery white index cards, which come in sheets of three so you can run them through a printer. (Product code 5388 if you're interested.) You can add the content for the sheets online through the Avery website and save them to a PDF for printing. The online Avery tool sucks: you have to be very careful to select the option to edit each card individually otherwise you risk over-writing all your work. I would have preferred to set up a template in Word or another authoring tool, but since we're using the cards in portrait mode rather than the conventional way I just couldn't get the results I wanted without way too much work. If you were printing landscape you could probably find or create a Word template easily.  

The card holder is one we got from a school supply store: the vertical divider is just a piece of tape we ran down the middle to create a demarcation between "to do" and "done": we couldn't' find anything exactly as we wanted online or in stores. 

We have found this system helps the whole family: would love to hear any other suggestions or if anyone else gives it a try!

Providing and constraining choices: a food court success story

When my kid began attending a program that included a weekly visit to a mall food court, I was a little bit concerned. Although my kid has a somewhat balanced diet, he does love his junk food. The prospect of him capitalizing on the chance to consume his ultimate favourite (KFC) weekly was enough to make me think we'd need to find another program for that particular day, which would not be a trivial exercise. Somehow I hit on the idea of revisiting the old "token economy" systems we used in his youth. I made a list of all the food court outlets that he could conceivably find something he would be willing to eat (this took a little research). I then set out those choices on a grid, with a column per week, and set a general rule of requiring a four week gap between visits to one particular establishment. It looked like this:

I found that as long as he knew it was possible to have his most desired thing, and that there was a specific date he could access that thing, he was willing to make other choices. Each week he'd chose from the list and I'd confirm that he wasn't "double dipping", as it were. Most astoundingly, he began to add possible eating locations to the chart, perhaps because of the choices he observed others making. Has he slipped up? Of course, but only in the early days. I can't describe how happy it makes me to have him report on eating something I honestly never knew he would. It appears that the almost obsessive desire for something can, in him at least, be satisfied by the assurance that it will be possible to have that thing, on a specific date. He may also be making broader choices due to peer pressure (particularly the example set by the group leader, who he very much likes and admires). On a side note, and presumably entirely due to peer pressure, he takes a picture with his phone of all restaurant meals these days. I find it simultaneously hilarious and charming when we eat out together to see him carefully position his food so he can photograph is just so, as if it was a unique dining experience to be recorded for posterity rather than, you know, a chain restaurant's 100% predictable output.. 

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.

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.