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January, 2021

Pandemic Times: Don’t Judge Me

2021-01-18

On Monday after the holidays, Dan looks after our three girls while I sit upstairs in my bedroom office writing a class assignment due in the next few days. He’s being incredibly flexible and generous with his work time, and I am grateful for that, beyond grateful. We had many intense discussions all through the summer, when the kids were home for six months straight, and then the announcement came that the kids would be home at least an extra week after the winter holidays, which felt, to me, like a punch in the stomach. How would the kids feel about staying home again? How would I get all my work done I had to do that week before my residency the second week of January? Most importantly, who would be in charge of the kids and the kids’ schooling that week?

Later that Monday afternoon, I received a call from the girls’ school. The totality of words exchanged is a blur and unimportant, all that matters is the final outcome: Elyse can come back to school for the week. I almost cried.

I’m going to speak for myself here, but maybe sometimes in the parent disability community, we are too afraid of acknowledging that we need help because we’re afraid that somehow makes our kids look bad. Like, all those times we advocated for how capable they are and how they can do so many things (and they CAN), but there are also so many things they need help with, and my god, parents, we can’t do it on our own. I really can’t.

When the school called me and said they would take our daughter, I wanted to weep with relief. I almost did. Why? It’s complicated. She needs the help. She needs one-on-one. We don’t have the time. We don’t want to teach her one-on-one; it causes conflict and inter-personal drama between members of our family. There are only two of us, my husband and I, and we have three kids and a needy puppy. We both have full-time work. Having to homeschool our kids puts a strain on my relationship with my husband and our marriage. Having the kids home for six months put a huge strain on our marriage. We were pushed to our personal limits. And part of that is our kids’ ages. We have a four-year-old, she was three at the time. And part of that is, yes, I fully admit it, having a child with Down syndrome. I’m ready to fully admit it. In the case of my family—and of course I don’t speak for other families on this one—given my daughter’s personality, and by virtue of being our middle child, and because she has Down syndrome and her brain works and processes somewhat differently, there are additional challenges we face in parenting her. We face additional challenges in meeting her needs. At times, these challenges are not small. These challenges aren’t insurmountable, either, but it depends what you have on your plate. These challenges aren’t nothing.

But here’s the part where I get mad, because some jerk is going to say, “see—there! Having a kid with Down syndrome is harder, that’s why we aborted.” Or give some terrible excuse about why kids with Down syndrome should never be born in the first place. To which I would like to respond: Who named you god? Who crowned you king of the species, decider of who lives and who dies? Why do you think you are so special that you get to decide? And why in the hell would you think that just because I find there are challenges in having my daughter with Down syndrome that that would mean I don’t want her here? Why do we discount family? Why do we discount love? Why do we always discount love? Kindness? Goodness? Nature?

The problem is that the laziness inside of each of us wants to simplify the narrative. Down syndrome parenting = hard, therefore, something I would not want. But that story is much, much too simplified. Yes, at times parenting my daughter with Down syndrome is hard, but, hear me out, it isn’t that simple. What I would like to be able to do is to tell you that sometimes it’s hard without you judging me or my child. What I would like is for your support. Not pity or charity. Never pity. Don’t even try me with pity. We are a family endowed in privilege, so please do not give us material things. Just love, please. Emotional support. These are the things every family needs right now and always, but especially families who have kids with disabilities.

And since I’ve mentioned the word privilege, I want to point out that having typical children is a sort of privilege. Don’t use that privilege to look down on others. Use that privilege to help people with disabilities and their families rise up.

And what I would like to say is THANK YOU. Thank you to my daughter’s school for understanding that educating our three kids at home, in front of screens all day, was never going to work for our family. THANK YOU for caring about our daughter with Down syndrome’s education by offering us a better way. Thank you for the choice. Families deserve a choice. Thank you to her teachers and educational assistants for making this work. Thank you to her board for heeding the minister of education’s advice. Thank you to whoever made that recommendation to the minister, that kids with disabilities should have access to one-on-one face-to-face education during the shutdown. Thank you for not making me feel like my child is an after-thought.

Thank you for knowing our daughter well enough to see that, to her, the Zoom platform is really just a giant made-up stage where her actions have no consequences, and so butt dances all day long are perfectly acceptable. And funny faces up close to the screen. Picking one’s nose on camera. And that making loud noises when her sister is trying to learn is fun, and so is shutting the computer screen down when it’s her turn to learn even when there’s a real-live person on the other end trying to teach her, and she’s making mom and dad pull their hair out.

THANK YOU, a huge thank you, to her special education resource teacher who knows that, in the week leading up to my MFA residency, I have a ton of work to do, and that my husband and I might explode if we have one more discussion about responsibilities (Okay, they didn’t know about that last part). Thank you for that feeling of joy bursting from my chest when we got off the phone that somebody cares about us, about our daughter, about me and my work.

Because I know, and if you don’t know this you should, but I know, that it is the mother who will get blamed. If school doesn’t go well, if the kids aren’t on time, don’t show up, it’s the mom’s fault. She is the one who is supposed to be doing everything. And guess what? I’m done. I am so done being fully responsible. My husband has stepped up in the hugest way. HUGEST way. And I want to thank him because he knew and accepted when he married me that I am a person with my own ambitions. I am not a wife who has dinner on the table at 5:30 p.m. sharp, like my grandmother was expected to. That was never the agreement. I am the human who works feverishly, following her passions, as long as I can, then comes down in time to eat the dinner he’s prepared for me. At least right now, that’s the wife and person I am. I’m in an intensive program. I’m building a career. I’m also doing what I love. And when his work got tough, you better believe I was there for him. Let no one forget I stayed home to raise our girls for years. I breastfed our babies. I stayed up through the night. I cooked passable meals. I made school lunches. I am not saying he owes me, but I am saying that he can do it too. Men can care for children too. They can take care of the home. Even when they are working. Women do it all the time. Nobody is saying that’s ideal. My husband is doing it, downstairs, right now. He knew that was part of the deal when he married me, that we are equal domestic partners.

But all of this? Virtual learning. A global pandemic stretching into almost a year. A constant underlying threat to you and everyone you know and love. Nobody was prepared for this. And so we’re just doing the best we can, together. But he’s giving, there is no doubt he’s giving, more of himself than he ever wanted to, and for that I am grateful. And thank you to the school for keeping us a healthy family and for giving us this support. And if you didn’t know this was what we were going through, what many, many young families, in some version or form, are likely going through, then now you do. And if you didn’t know that for some families of kids with disabilities, the challenges can seem to stack up higher, now you know that too. Just don’t judge me or my daughter for it.

A Helping Hand: Disability Employment Services

2021-01-07

Reprinted from 3.21: Canada's Down Syndrome Magazine (Issue #5: The Housing & Employment Issue). Click here to download the full magazine.

After she graduated high school, Danielle Juilfs did all the right things to prepare to enter the workforce. She enrolled in an employment preparation program at Capilano University, where she received training in general work skills, resume writing and job expectations, and engaged in temporary placements to gain experience. Meanwhile, her father Jim was taking her to his office regularly, where Danielle worked with office staff to complete basic clerical duties. She also learned and practiced various bus routes in order to become comfortable traveling independently.

Danielle was ready to take on the working world… but what now?

This is where many families get stumped. How do you go about finding the right position with the right employer – one who is not only prepared to hire a person with Down syndrome, but sees the value they can bring to a business, is prepared to invest in the necessary supports, and provides opportunities to make a meaningful contribution?

Knocking on doors and answering “Help Wanted” ads is a labourious process at the best of times. For a person with an intellectual disability, it’s like finding a needle in a field of haystacks. Fortunately, there’s a better way, and Danielle found it.

Danielle and her family connected with posAbilities Employment Service, one of many specialized Canadian employment service agencies that assist with job placements and workplace integration for workers with developmental disabilities including Down syndrome and autism. Like most such agencies, posAbilities’ service was available free of charge to the family. With their help, it wasn’t long before Danielle landed a job she loves at City Market, where she stocks and organizes shelves, ensures products are facing outwards, and checks the expiry dates of products.

But we’re getting ahead of ourselves. Achieving employment is the end goal of a process that can take anywhere from a couple of weeks to a year or longer. How does one get from the starting line to the finish?

Discovery

Every agency does it a little differently, but each one starts with some kind of discovery process. Long-term success does not come from jamming the would-be worker into the first available job. It requires understanding the person’s goals, interests, strengths, challenges and support needs, and fitting them with an employer who matches well across all these areas.

Sean Wiltshire, CEO of St. John’s, NF-based Avalon Employment, emphasizes the importance of this fit. “By identifying what the employer needs, usually five things, and then finding an individual that has those five, the match goes well,” he says. “The ability to deal with any challenges or issues is much easier because the skill and the need are represented and talked about up front and matched. The employee goes into it knowing that they can do this job because ‘these are the things they want me to do, these are the things I know how to do, and I'm already a success.’ I’m not introducing Bill who has Down syndrome. I'm selling that Bill has a skill, because I heard that this business needs this skill.”

It’s not just about hard employment skills; life experience also comes into play. “People with disabilities usually don't have the same life experiences that the rest of us have,” says Sean McEwen, Director of Operations for Gateway Association Calgary. “By the age of 20, most of us have driven a car, we've gone on vacations with our friends, we've been to a post-secondary institution where we're plotting out a career and relationships and things like that. We don't see that happening necessarily to the same extent with people with intellectual disabilities. And so what I really want to do is look at what are the opportunities they have had and what have they loved about those opportunities, what have they hated about those opportunities? Because a person's values matter a lot when it comes to employment.”

Preparation

After working through the discovery process, attention turns to pre-employment preparation. This can include the development of skills needed to find a job, as well as the skills critical to success after the job has been found.

posAbilities supports clients through each step of the job hunt. “An Employment Specialist works with the job seeker to prepare a resume reflecting how they can benefit an employer,” says Kalena Kavanaugh, Employment Services Manager with posAbilities Association of British Columbia. They also work with the individual to brush up on their interview skills.

At Gateway, they take it a step further. “We actually pay people for their time in the career exploration process,” says McEwen. “This is a very unique thing. The youth employment skills strategy for Canada really has a lot of resources to build the capacity. Part of the employment preparation process is making sure that people understand workplace culture and employer expectations. If there's training that we can get in place for them that we can then add to their resume, it makes them more appealing to employers. Then we go out and hit the bricks and we find them interviews for the jobs they're looking for.”

The amount of support provided in the pre-employment phase depends on the needs of the individual. Some come to an agency ready to roll, having already completed a skill development program elsewhere. Others need more assistance and input prior to approaching prospective employers.

“Gateway Calgary operates the ‘Get Work Program,’ which is an employment service for youth with any type of disability,” explains McEwen. “We help youth go through the usual continuum of identifying, preparing for seeking, acquiring and retaining employment. Everyone goes through the exact same continuum; the level of support we provide during each of those phases would change based on the person's individual needs and type of disability.”

At Avalon, the focus is on the skills the individual already possesses. As Wiltshire says, “We engage with the employer to make sure the right skills are there. But we're going to match you to a job that your skills exist for already.”

Job Matching

One of the big benefits of working with an employment service provider is that they have already done the hard work of building relationships with employers, and educating them on the benefits of hiring someone with a disability. As Kavanaugh says, “Most employers just want to know that the person they are hiring wants to learn the job and do a good job. They don’t always have all the information on intellectual disabilities, so it is our job to educate them so they can better understand all the awesome abilities people have, helping them to create more inclusive places of employment.”

Think of the employment service provider as a bridge between employee and employer. They work both ends to ensure a match that works for both parties. Says Kavanaugh: “Each individual will be supported by their Employment Specialist to look at employment opportunities in community. As an employment service we have relationships with employers who are looking to fill employment opportunities year round, or we may look at jobs that are advertised and assist clients in applying online, as well as going out into the community and enquiring about possible employment opportunities with employers that the individual wants to work for.”

While most agencies work primarily with job seekers, Jamie Millar-Dixon of BC Partners in Workforce Innovation represents the other side of the equation. As an Inclusive Workforce Consultant, she advises businesses looking to hire, helping them discover the competitive advantage that team members with intellectual disabilities can bring to their organization, and connecting them to people seeking employment.

“The way our initiative works is, rather than starting with the unemployed job seeker, and then shopping that person around to see who will hire them, we actually start with employers who have job openings and are committed to being inclusive of people with diverse abilities. When they have an opening, we do a recruitment campaign out to our network of 98 different organizations in BC’s Lower Mainland,” says Millar-Dixon.

This model began as a research project aimed at determining whether this reverse approach is an effective means of creating more employment opportunities for workers with intellectual disabilities. The results have been promising.

Although she’s coming at it from employment demand vs. supply, Millar-Dixon sees this employer-centric approach as being complementary to, rather than in competition with, the traditional social services model. When she recruits on behalf of a company looking to hire, she reaches out to service providers like posAbilities to tap into their pool of eager job hunters. And when families come directly to her, she often refers them to service providers who are in the business of supporting the job seeker. Ultimately, like the agencies, she is focused on finding the best match of employer, job and employee.

Integration

Once the match has been made, the focus shifts to integrating the employee into their new position in a way that sets them up for success. This includes putting in place any accommodations needed by the employee, training them in their job duties, and if necessary, working alongside them until they are comfortable and capable of performing the job on their own.

Different agencies provide varying levels of support around this, so it’s important to do your research before choosing a service provider, to ensure the individual’s needs will be met.

Wiltshire stresses that every situation is unique. “We always say we are here for as much or as little as you need or want. If you want us to come by every day, because this week you're really struggling, we'll come by every day. But normally you only see us once a month. We ask people what they want. We have a client who only calls us when he has his performance evaluation. He just wants us to sit down once a year and support him and his understanding of what they're saying. We always tell the employer we're here too. We don't check in, but if you need us, we’re here 24 hours a day. It gives employers a sense of comfort and the employee a sense of comfort.”

At posAbilities, the structure is more formalized. “Once you have secured a paid job, we will be there to provide the on the job training should you want, work with your employer to assist them in how they can provide any accommodations if required,” says Kavanaugh. “Even when everything is going great we will still be checking in, because we are CARF accredited and under that accreditation we are required to support all our job seekers and their employers for the next three years with check ins that dissipate each year. So in year one, you will hear from us as often as every month; in year two, every three months; and year three, twice. This process helps us to provide support if needed, or just say ‘Hello’ and remind you we are only a phone call away if you or your employer need us.”

The service agency provides a layer of support, not just for the employee, but also for the business that hires them – particularly if they haven’t previously employed people with intellectual disabilities. “They might be nervous because they don't know how to talk to the person,” says Wiltshire. “And that's just something that comes over time. Also, it's giving people the opportunity to both have success and failure and experience and learn. That's how we all learn. Any concerns they have, we tell them we're going to be here. We have lots of history. People trust us because we want the best for them.”

For McEwen, it’s important to help the employer build a culture of inclusion. “We provide to the employer ongoing consulting, information and resources around workplace inclusion and diversity, as well as how to use new employees with disabilities as a bit of a coaching ground for diversity and inclusion. You can call us, you can talk to us, and so can the employee. And we will pay half of this person's wages for the first six weeks as a way to compensate you for the extra training that you might have to put in.”

Kavanaugh concurs. “Ensuring that we have a supportive employer who wants to learn more about diversifying their workplace is the best place to start.” To this end, posAbilities provides Diversity and Inclusion workshops to staff and management free of charge.

A Profitable Investment

There’s no question that hiring a person with Down syndrome can add some complexities for a business. There’s also no question that it’s a worthwhile investment. “The benefits of hiring persons with disabilities are endless,” says Kavanaugh. “Statistics show that a person with a diverse abilities is likely to stay in their job longer, resulting in lower turnover and less downtime in training dollars. Families, friends and relatives of persons with diverse abilities are more likely to be loyal contributors of their spending dollars to businesses that show they hire inclusively. In some cases, a person with a diverse ability may be able to focus on doing a specific tasks for a period of time that other staff just never seem to get to, ensuring that the parts of jobs that often get missed are now getting completed.”

“At Gateway we work with the employer to demonstrate ability,” says McEwen. “If you are autistic, that diversity and that neurodiversity may mean that the employer will have a better organized warehouse, which means they'll be able to find things more quickly, which means they won't waste time, and time is money. We have just helped your bottom line as a business by helping you to understand that diversity is what you need. People solve problems differently.”

McEwen is also owner and operator of RealEyes Capacity Consultants - a national group of consultants that work with service providers and employers to build their capacity around employment inclusion. He makes the case for inclusive employment as an essential strategy of the future. “Over the next 10 to 15 years, twenty five percent of our workforce is going to disappear, and the replacement workers for those people aging out of our workforce are going to be new Canadians, indigenous people, people with disabilities, etc. Diversity and inclusion is actually a sustainable workforce strategy. If you want to survive beyond the next 10 to 15 years as a business, you'll get good at diversity and inclusion.”

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