How #ActuallyAutistic helped me come out as neurodiverse

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National Autism Awareness Month. illustration with text

By Amanda Morin

As we headed into what has been traditionally known as Autism Awareness Month, it’s the first year I don’t feel a pit of dread in my stomach. In part, that’s because of the National Autism Society of America’s push to make April “Autism Acceptance Month.”

I have three children, two of whom are loudly and proudly #ActuallyAutistic, and for many years I’ve wondered what it is we want people to be aware of when it comes to autism? Is it that autistic people like my sons exist? Is it that autism exists? That’s not in question. What is in question is whether other people accept them for the neurodiverse people they are.

But that’s only part of the reason I don’t feel as much dread this year. It’s also because neurodiversity is opening its aperture to include people like me, who aren’t autistic, but share some of the same ways of thinking and learning differently.

The way my extreme difficulty with sensory processing, social anxiety, and thinking differently presents has led to a diagnosis of obsessive compulsive disorder (OCD). But I think it’s possible that under other circumstances, evaluated by a different clinician, in a different time, I, too, would have been diagnosed as having autism.

The specific diagnosis doesn’t matter to me; what matters is being able to say I’m neurodiverse. To stand loud and proud next to my sons to make sure we live in a world that sees neurodiversity through an asset-based lens, not a deficit-based one. A world that recognizes learning and thinking differently is a variation of human experience, and one that recognizes autism is only one of the diagnoses people who identify as neurodiverse carry.

It’s been encouraging to see conversations about neurodiversity starting to include ADHD in addition to autism. They often occur together, but the omission of these types of differences in the realm of neurodiversity has left people like my younger son, who is autistic and has ADHD, subject to people understanding only part of who he is.

That matters not just for him, but also for the one in five people in the U.S. like me, who learn and think differently because they have variations in how the brain processes information. Those variations can affect attention, sensory processing, reading, writing, math, and other skills. On its own, processing information differently may not be a concern, but because of the way our schools, workplaces, and communities are set up, they impact people’s ability to thrive in some aspect of their lives.

These disabilities are invisible in many ways, and the result is that disabled people like me have often been overlooked. There’s still a deep misunderstanding of differences other than autism and ADHD and how they affect people. In fact, according to research done by the National Center for Learning Disabilities, fifty percent of people believe that learning disabilities don’t exist. Forty-eight percent of parents believe incorrectly that kids outgrow them, and thirty-three percent of classroom teachers and educators believe these challenges are just laziness.

Over the past year, it’s been encouraging to see movements for racial, social, and economic justice accelerate to improve the lives of people who have not had equal rights or opportunities for so long. It’s thrilling that the White House named a disability policy director to sit on its Domestic Policy Council, elevating disability to the same policy level as other things that impact everyday life.

Yet for all this progress, as someone who works to promote inclusion, it’s important to me that learning and thinking differences aren’t overlooked in other spaces: corporate diversity, equity and inclusion efforts, progressive education initiatives, and our society at large. Moving from awareness to acceptance is a great start. At the same time, there’s also room to start moving toward action.

So, how do we include other types of neurodiversity in acceptance months and employer-recruitment initiatives without devaluing the tremendous strides the #ActuallyAutistic community has made not only toward acceptance, but also toward celebrating difference?

Personally, I think the answer lies in the question, the same way what has been learned from the fight for racial equality and desegregation informed the disability rights movements in a way that lets us say that disability rights are civil rights, too. It’s because of the work that has come before us that we can begin to make room for other differences in the broader conversation about neurodiversity.

This Autism Acceptance Month, I want to thank the loudly proud autistic community for paving the way for people like me to come out as neurodiverse. I’m ready to celebrate the ways in which we think differently and join forces in pushing forward the assumption that my family and I should be accepted as the neurodiverse people we are.

About Amanda Morin
Associate Director, Thought Leadership & Expertise
Understood

Amanda Morin is an author, parent advocate, and mom to kids who learn differently. She worked as a classroom teacher and as an early intervention specialist for 10 years. In her thought leadership role at Understood, she leads efforts to build internal knowledge about learning and thinking differences, works toward establishing Understood as an authority in the field, and ensures that the organization’s work is evidence-based and reflects unique expertise and innovative perspectives.

Amanda has been working in print and digital media as a writer and editor for over 15 years, empowering parents and educators to affirm the pivotal roles they play in children’s education. She played an integral role in launching Understood.org in 2014. Some of Amanda’s other clients over the years have included Education.com, Parenting Special Needs Magazine, VeryWell (formerly known as About.com), and Popsugar Moms.

During her years as an early childhood educator, she taught kindergarten and worked with infants, toddlers, and preschoolers with disabilities. She provided education and training to parents of children with disabilities and led multidisciplinary teams in developing and implementing Individual Family Service Plans.

Morin received a bachelor’s degree in education from the University of Maine and special education advocacy training from the Council of Parent Attorneys and Advocates. She holds a certificate in Universal Design for Learning from the UDL Implementation and Research Network.

She is the author of five books: The Everything Parent’s Guide to Special Education, The Everything Kids’ Learning Activities Book, On-the-Go Fun for Kids: More Than 250 Activities to Keep Little Ones Busy and Happy — Anytime, Anywhere!, What Is Empathy? A Bullying Storybook for Kids, and Adulting Made Easy: Things Someone Should Have Told You About Getting Your Grown-Up Act Together.

Morin is a member of Matan’s Professional Advisory Board. She and her family reside in coastal Maine.

DEAF AWARENESS WEEK: 3 OF THE BEST FILMS AND DOCUMENTARIES IF YOU’RE KEEN TO LEARN MORE

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Riz Ahmed wearing head phones and looking away from the camera from the film Sound of metal

By Prudence Wade, Independent

It’s Deaf Awareness Week: an opportunity to “promote the positive aspects of deafness, promote social inclusion and raise awareness” around the organizations that support the community.

The tides are changing for deaf representation in Hollywood: Sound Of Metal has been one of the breakout movies of the year, and the upcoming Eternals film features Lauren Ridloff as the first deaf superhero in the Marvel Universe.

In the meantime, you can celebrate Deaf Awareness Week by watching these films and documentaries…

1. Sound Of Metal
There’s a reason Sound Of Metal has garnered so much awards season buzz: it’s a touching, sad, yet uplifting portrayal of a heavy metal drummer – played by Riz Ahmed – who suddenly loses his hearing. As an addict, this loss could send him into a tailspin, so he checks into a shelter supporting deaf recovering addicts. There, he starts to live with his deafness – learning sign language and getting to know deaf children.

It deals with some big issues – such as the arguments for and against cochlear implants (some think deafness doesn’t need to be ‘fixed’) – and the performance of Paul Raci (who is a hearing child of deaf parents) as the shelter’s leader is particularly moving.

Watch on Amazon.

2. Deaf U

Deaf actor and model Nyle DiMarco produced Netflix’s Deaf U, a reality TV show following deaf students at university in Washington DC The show, released in 2020, was groundbreaking for onscreen deaf representation, and even had a 50% deaf crew behind the scenes.

It feels like a classic teen reality TV show, with the characters navigating relationships, sex and dating – but all are either deaf or hard of hearing. DiMarco’s aim was to show the deaf experience is varied, and told Vanity Fair: “There is no one right way to be deaf.” Deaf U was criticised for not fully representing deaf people of colour – to which DiMarco replied: “This show is unprecedented. It’s already an amazing deep dive on the community, but of course we can always do better. We must always strive for better every time we come to the table to create.”

Watch on Netflix.

Click here to read the full article on the Independent.

Cleanlogic bath & body care with inclusivity in mind

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ClenaLogic body and bath products scattered around shower stall

Cleanlogic, the fastest-growing global bath and body care accessories manufacturer, announces a relaunch with new branding and product offerings to provide an enhanced, all-encompassing consumer experience.

Cleanlogic, which saw 180 percent growth in 2020 alone, was built upon delivering innovative, sustainable, inclusive and socially responsible product experiences to consumers-such as featuring Braille across all packaging. These core values drive the brand’s mission- Nice and Clean.

The relaunch incorporates a fresh, bold and modern look featuring a new logo and trend-forward fabric colors. Coinciding with the new packaging, the brand is introducing all-new sensitive skin products and enhanced facial exfoliation products as well as four distinctly enhanced product collections- Bath & Body, Sport, Detoxify and Sustainable – each identified by its own unique color and product enhancements such as charcoal-infused and certified organic cotton material.

Cleanlogic products continue to deliver superior quality and innovation including:
● Stretch Fiber TechnologyTM​, a patent-pending blend of materials that ensures a flexible full body exfoliating experience
● Antimicrobial Protection, which slows the spread of microorganisms such as bacteria and mold
● Dual-Texture Exfoliators, designed with a textured side for deeper exfoliation and a microfiber side to smooth skin

Beyond feeling physically good after using Cleanlogic’s products, consumers can also feel good about investing in a brand that truly takes conscious beauty to heart. “Our mission is to be really good people who make a really good product that gets you really clean,” said Isaac Shapiro, President and Co-CEO of Cleanlogic. “We believe feeling nice and clean is a basic human right and we want our products to reflect this ‘Nice and Clean’ position.”

Inspired by co-founder Isaac Shapiro’s mother, who lost her eyesight as a child, Cleanlogic is a pioneering beauty company in the U.S. and one of the first to feature functional braille on all product packaging as a way to support over 25 million people in the U.S. who are blind or have low vision. Additionally, a portion of all sales are donated to visually impaired organizations including American Foundation For the Blind.
CleanLogic wash glove with soap on it and hand inside flashing a peace sign
As another testament to the brand’s commitment to “be nice and clean,” Cleanlogic is proud to house its own company-owned, Control Union-certified factory for all production that ensures fair trade and fair pay and hiring initiatives. The brand will expand its production footprint to the U.S. by introducing a Philadelphia-based factory later this year, in addition to the original factory in China.

Historically, the biggest barrier to people using body exfoliators was worry about harming the skin. Cleanlogic’s 2021 relaunch sets out to educate the general public about the benefits of exfoliation, including softer, healthier and cleaner skin, all while amplifying the Nice and Clean mission.

The fusion of beauty and wellness is driving the skincare industry and as a result of the pandemic, people are focusing on their skincare routine more than ever before. Cleanlogic leads this movement with products that make your skin feel renewed, refreshed and ready for anything. The entire product portfolio is suitable for all skin types and is offered at an accessible price point starting at $5.00.

Beginning today, consumers can purchase the new Cleanlogic products at www.cleanlogic.com and Amazon.

About Cleanlogic:
Founded in 2001 by Isaac Shapiro and Mike Ghesser, Cleanlogic produces and sells sustainably made bath and body care products to its worldwide customer base. The company is the fastest growing global brand in the bath and body accessory industry and the top brand in that category in the U.S grocery channel. For more information, visit www.cleanlogic.com.

Feeling the Music and Fueling Inclusivity – A Moment with Mandy Harvey

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Mandy Harvey onstage sideview signing in to microphone bright pink show lights in background

If you watch Mandy Harvey perform, one of the first things you notice about the “America’s Got Talent” finalist is her amazing voice. What you might miss is that she’s not wearing any shoes.

“[It’s] so you can feel things better when you’re standing on the stage,” Harvey told NPR news. “You can feel the drums, and you can feel the bass. So, being able to feel the music through the floor, it makes me feel like I’m a part of the band and not just the only person in the room who doesn’t really understand what’s going on.”

This award-winning singer, songwriter and motivational speaker lost her residual hearing at the age of nineteen while a freshman vocal major at Colorado State University. She pursued multiple career options, but returned to music, her true passion. She quickly became an in-demand performer and has released four albums as well as a book about her incredible journey.

DiverseABILITY Magazine had the pleasure of speaking with Harvey about her personal journey, her songwriting career and the impact she’s had on disability inclusivity – both within and without the music industry.

DiverseABILITY: You partnered with Voya Financial and Disability:IN to create and headline a concert that featured multiple artists (musicians, and even a painter, with disabilities) in October 2020 for National Disability Employee Awareness Month, encouraging and highlighting the push to hire people with disabilities and special needs in order to create more inclusivity in the workplace. Why was this event so important to you and what were your considerations as you planned and orchestrated this event? Do you think it had the measurable impact you were hoping to achieve?

Harvey: First and foremost, I wanted to celebrate National Disability Employment Awareness Month, which is incredibly important because it is painfully obvious that a lot of businesses are not inclusive. They’re missing out on having a lot of really talented and amazing workers be a part of their company and team. And so, it was important to me to be able to encourage businesses to hire diversely.

There are a lot of businesses that are already striving, but [there were also] a lot of other businesses that made big commitments to hiring inclusively with the event. So that’s a measurable impact; even if that means one company hired one person – that’s a measurable impact in my life. We had a lot of CEOs make good commitments to change for inclusion, which is amazing.

The other part that was important to me is that I wanted to have a concert that was totally inclusive. With everything going virtual, there’s all these pop-up concerts but most of them are not inclusive or they’re featuring people who are not necessarily living inside of that community. And so, I wanted to allow different people to have the opportunity to showcase their art and to further the understanding that it doesn’t matter if you have an ability or disability, that you are an active contributor to the world, and you have the ability to make a difference.

Mandy Harvey book cover
Photo Credit: Amazon.com

DiverseABILITY: When you imagine inclusive spaces, especially in the music industry, what do they look and sound like? How are they different from what is most often seen and experienced by our society now?

Harvey: For the music industry, having an inclusive environment is so rare that it’s difficult to know what that would look like. I have personally been invited to several concerts where the building ended up providing an interpreter, but the interpreters didn’t have any access to the feed, so they couldn’t understand what the singer was singing. They were not given any materials, so they ended up just standing there and staring at me for the entire concert.

To be able to have different forms of communication throughout a concert, or in the music industry in general, is difficult because it’s one more thing for a company to have to think about — but at the same time, when you don’t think about it, you’re excluding a large pool of people who could be attending your shows and who want to.

Having lyrics available, having an interpreter who actually knows the songs ahead of time and is prepared to be there, even for big corporate events, having some type of audio description or captioning would [all] be amazing and beneficial. And not just for the people who are needing it — how many times has there been a concert or a corporate event where you didn’t understand what they were saying because too many people were talking at the same time? If you could actually see the captions in front of you, you would be more of a participant than you were before.

DiverseABILITY: The song that introduced and catapulted you into the spotlight was your self-written “Try.” It deals a lot with the issue of self-advocacy, which is the very difficult but necessary first step towards achieving anything in life. If you could expand on that song today and its message, now that you’ve traveled and spoken to so many fans who love it and have shared their stories with you, what would you add or change? What would you tell the young woman who wrote that song those years ago?

Harvey: I think that having that first step is so incredibly important, to be brave enough to even contemplate getting up off the floor. However, I’ve written other follow-up songs to “Try” that continue forward with the next stages of what I did — including the song “This Time.” The central idea of that is, “Yes, I’m trying. I keep failing, but I’m going to continue to try. However, because I’m not doing it alone, I know that I’ll be successful.” So, that song is a lot more about gathering a team around you of people who can encourage you when you fail or fall apart, and who can push you past your comfort zone to achieving something beyond maybe what you’re capable of even dreaming in that moment.

I don’t think there was anything that I could have said to that young woman that would have really hit home at the time. I needed to live my experiences, and I would have ignored anything that you said in the midst of that pain anyway. I was told everything, but I needed to find my own path.

DiverseABILITY: There’s a great song by another beautiful artist called “I Was Here” that boldly declares, “When I leave this world, I’ll leave no regrets/ Leave something to remember, so they won’t forget.” What do you want your something to be? When it’s all said (or signed) and done, what does your legacy look like?

Harvey: If I could work towards anything, it would be to continuously be a gracious and compassionate person in everyday life. Yes, I would like to have a ripple effect for change, positivity and inclusion, and to be able to be there for people on a grand-scale, but just being a person who can sit next to somebody and not say a word while they cry has an impact that is a legacy in itself.

“Try” is about understanding that you’re broken and wanting to be different. My new single coming out in March, “Masterpiece,” is saying that I am embracing the parts of me that are broken, and realizing that they’ve made me who I am.

The point of “Masterpiece” is to say that even though you might not know where you’re going in that moment, when you shoot forward in time and you look back on it, you’ll realize how much you’ve learned and how much you’ve grown. And that’s a part of such a big story that I feel people should know about.

I don’t ever want to change that girl who wrote “Try,” and diminish the struggle that she went through because that has changed and impacted who I am and how compassionate I am towards others, so much so that I would never want to take back any part of my past journey. I hope that people can truly embrace their journeys however difficult they may be, and realize that it’s making you stronger.

Mandy Harvey continues to perform around the United States and has been featured on CNN, NBC Nightly News, Canada AM, The Steve Harvey Show and in the Los Angeles Times. In addition to performing and speaking, Mandy has become an ambassador for No Barriers USA with a mission to encourage, inspire and assist others to break through their personal barriers. She published her first book on her life story, Sensing the Rhythm: Finding My Voice in a World Without Sound, in 2017.

TSA To Improve Screening For Travelers With Disabilities

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A TSA worker wears a mask while helping travelers get through a security checkpoint at Miami International Airport.

By Shaun Heasley, Disability Scoop

The Transportation Security Administration is set to start implementing new staff training and screening procedures to better serve individuals with disabilities as they make their way through airports across the country.

Beginning as soon as May, the TSA says that it will educate its officers to look for designations on driver’s licenses and other state identification cards denoting that a person has a disability that may pose a communication barrier.

Several states have updated their laws recently to allow people with disabilities to add what’s known as a “communication impediment designation” in order to alert law enforcement officers of potential issues. U.S. Rep. Dan Kildee, D-Mich., and 11 other lawmakers reached out to the TSA late last year to ask the agency to train its officers on the new driver’s license notations.

“We are updating applicable trainings to ensure that all (Transportation Security Officers) are aware of communication impediment designations and expect to deliver the updated training to the TSOs as early as May 2021,” wrote the TSA’s Darby LaJoye in a response to Kildee.

LaJoye said the TSA is also “discussing the possibility” of integrating communication impediment designations into its credential authentication technology which allows agents to retrieve pertinent information about a traveler by scanning their identification card.

Click here to read the full article on Disability Scoop.

Hearing Loss & Access to Captioned Telephone Service

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man wearing glasses and holding cell phone up to face

Did you know that approximately 48 million Americans experience some degree of hearing loss? Communication is central to all aspects of daily living—including health care, socialization, education, and employment—but without the right assistive tools and technology to facilitate that communication, people with hearing loss often encounter significant barriers. Accessible communication technology is integral to removing these barriers and ensuring the best possible quality of life.

Under Title IV of the Americans with Disabilities Act (ADA), Americans who experience a hearing and/or speech disability have a right to access telecommunications services that is “functionally equivalent” to those relied upon by consumers without such disabilities. One such available service is Internet Protocol Captioned Telephone Service (IP CTS), or captioned telephone service, which is provided for at no cost to users through a program administered by the Federal Communications Commission.

When a person with hearing loss picks up a captioned telephone (or uses a mobile app offered by an official captioned telephone service provider) to make a call, the call is automatically routed through a call center. Once the call is received in the call center, everything the other party says is accurately captioned either through a combination of advanced automatic speech recognition (ASR) technology and a skilled transcriber, or by ASR technology only. The captions are then sent back to the captioned telephone service user’s phone or app in real-time. It’s a vital service that enables people with hearing loss to easily engage in conversations.

Robert Eugene Richardson, a Vietnam veteran and retired attorney who experiences significant hearing loss, has benefited immensely from access to captioned telephone service. “It was a game changer for me,” he shares. “I used it when I worked at legal jobs outside the courtroom. I use it to communicate with my children, and I use it to communicate with my friends and my doctors and other healthcare providers. I use it to stay engaged in my community. I may be retired from work, but not from life. I am still involved, and the ability to connect with people using the phone is critical to this.”

The Clear2Connect Coalition is dedicated to empowering all people with hearing loss to access the communication tools they need to thrive, just as Mr. Richardson does. Comprised of a range of disability, military, and veteran-serving organizations, our goal is to advocate for protecting the quality and accuracy of captioned telephone services so that anyone who needs them can benefit. We know how important it is for people with hearing loss to be able to connect with the people in the families, networks, and communities. Telephone captioning helps makes this connection happen.

VIEW THE VA ACCESSIBLE PDF HERE.

For more information on how to access free captioned telephone service, to learn about Clear2Connect Coalition’s advocacy efforts, and to sign up for their updates, visit the Clear2Connect Coalition website or email them at: info@clear2connect.org.

Employee Self-Advocacy: How To Talk To Your Employer About Your Disability

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Three business people standing in their suits speaking with one another in an office library

By Paula Morgan, Forbes

Not everyone feels comfortable sharing their personal lives with their employers, particularly when it comes to health issues and disability. Legally, you are in no way obligated to disclose your disability to your employer, or even to a potential employer during an interview. It is also illegal for employers to ask about it outright, but once you bring it up, the topic is fair game.

Sometimes, however, it’s necessary to mention your disability to your employer, particularly when you are requesting a reasonable accommodation to help you perform your job better. While it may be a scary conversation, talking about your disability with your employer is an important opportunity to be an advocate for yourself, which is something that all employees should learn how to do.

Self-advocacy is as simple as taking the initiative and having the confidence to talk with your employer about your needs in the workplace. For some, this conversation may center on a deserved raise or promotion, but at its core, advocating for yourself is about communicating what you need to do your best work. Even if you are working with a case manager to find a job that embraces individuals with disabilities, you cannot and should not depend on other people to advocate for you.

We’ve seen the powerful impact self-advocacy has had on our customers here at Allsup Employment Services. One success story that stands out came from an individual who had returned to work at the Post Office after being out of work for a year due to her disability. She struggled to do the heavy lifting required for the job and was about to quit, when she received a letter from her union about the possibility of switching to light duty.

After speaking with one of our case managers about what that would look like and getting a letter from her doctor, she met with HR and the union, who helped her to outline the duties she could do to fulfill the light duty assignment. She has been back at work and thriving for months, all because she made the decision to speak up.

Advocating for yourself begins by having a conversation with HR or your employer, and the best way to start is by framing it in a way that makes your priorities clear: taking care of your health and doing your job well. Use this time to be transparent with your employer. Talk about the challenges that you’re facing and lay out specifically what you believe you need to overcome those obstacles and function at your highest level in the workplace.

Make sure to keep the conversation positive and highlight the correlation between the accommodation you are requesting and the impact it will have on your performance. One of our case managers was helping an individual who was working really hard to manage a job she couldn’t physically do, and her supervisor recognized that, as well as the fact that it wasn’t a good fit. But because of her hard work and dedication, her employer offered her the opportunity to transition into a position that aligns better with her abilities.

Another piece of the puzzle that stops employees from requesting accommodations is the confusion over whom to ask. It’s different for everyone, and it may be more than one person. For some, it could be HR or a manager, but it’s always best to start out having these conversations with your immediate supervisor. Someone with whom you work on a daily basis is in the best position to recognize the great work you’re doing and the workplace obstacles that might be hindering your performance.

Employers will often need to strategize with HR to determine employee eligibility for an accommodation and how to provide it, but in most cases, the biggest obstacle is that the employee doesn’t come forward out of fear. Often the solution could be as simple as a flexible schedule, for individuals who have frequent medical appointments, or an inexpensive piece of equipment to make a desk accessible for use of a wheelchair.

Click here to read the full article on Forbes.

This Fairhaven native actor proves minorities and people with disabilities can take center stage

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Brennan Srisirikul posing in front of an all blue backdrop while sitting in his wheelchair

By Seth Chitwood, Standard-Times

FAIRHAVEN — Brennan Srisirikul knew about the Easterseals Disability Film Challenge, but never had the confidence to submit a film — especially since he’s never made one. But after a crazy year, he knew it was time to go for it.

“With the anti-Asian murders in Georgia, it was personal for me, because I’m a mixed race,” Srisirikul said. “My dad is Chinese and my mom is American.” Srisirikul was born in Bangkok, Thailand and grew up in Fairhaven.

“My race wasn’t really ever something that I thought about,” he said. Srisirikul has cerebral palsy and has been in a wheelchair all his life. “I’m disabled. So, in my mind, for so long, I thought like that was the only thing people saw.”

But, Srisirikul said that during the pandemic he first faced anti-Asian racism. “The first time it ever happened, someone walked up to me and shouted in my face, ’15 Dollah! 15 Dollah!’”

Srisirikul also is a singer and actor. He wanted to create a short film that not only addressed racism but incorporated his background in musical theater. Alas, “BRENNAN! A New Musical, But Actually A Short Film” was born.

The short film stars Srisirikul opposite John M. Costa as Mike, his therapist. They discuss the impact of COVID-19 and Srisirikul wanting desperately to perform because of his new-found confidence for singing. Srisirikul struggled with his singing voice ever since he was 14.

“The most dramatic thing that ever happened to me was puberty,” he said

Click here to read the full article on Standard-Times

Planning for a Lifetime: 5 Key Considerations (and Resources!) for Parents of Special Needs Children

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Woman with a laptop and girl sitting on the floor by a couch looking at a tablet

According to the Centers for Disease Control and Prevention (CDC), developmental disabilities affect approximately 17% of children aged 3 to 17 in the United States. As medical advances have continued, it’s become more likely that children with special needs may outlive their parents. According to the National Down Syndrome Society, the average life expectancy of a person with Down Syndrome is 60 today. In 1983, it was only 25.

JAMA Pediatrics suggests the lifetime costs for caring for a person with autism to be $2.4 million.

As parents and caregivers to children with special needs, we’re faced with challenges most can’t imagine. The University of Wisconsin did a study that demonstrated mothers of a child with autism had stress hormone levels similar to soldiers in combat!

This stress emanates from ongoing worry for the health and safety of your child, guilt that you did something wrong, feeling like you need to be an expert on your child’s physical or cognitive impairment, tirelessly advocating for medical treatments, school programs and accommodations — and paying for it all.

Here are five important considerations, along with resources, for parents of special needs children:

  1. Emotional Well-Being for the Entire Family

Parents of children with developmental disabilities have higher rates of physical and mental health issues than parents of children without these conditions.

Are you taking time to look out for your emotional and physical well-being? Having a child with special needs places enormous stress on a marriage and other relationships. Too often, parents ignore their own mental health issues because they are understandably overwhelmed with caring for their child.

You can find a helpful list of support groups for parents of children with special needs here.

  1. Financial Planning

Planning and getting started early is critical for parents of special needs children.

Understand the ongoing estimated costs to help support your child. Set up a third-party special needs trust before your child turns 18. Inform and invite family members to participate in building financial security for your loved one. Anyone can contribute to the third-party trust and every little bit will help.

If your child is receiving Supplemental Security Income (SSI), paying for food and shelter from a special needs trust will cause a reduction in SSI benefits. That may be a worthwhile tradeoff if it’s the only way to meet preferred housing needs. You can pay for things like personal care, vacations or therapies not covered by Medicaid using the trust.

  1. Estate Planning

When you set up your estate planning documents, take the time to understand how to choose a trustee and trust protectors. The job of the trustee is to act in the best interest of the beneficiaries of the trust by safeguarding the assets of the trust and ensuring those assets are used as required by the terms of the trust.

A trust protector’s job is to supervise the trustee and protect the beneficiaries from any misconduct by the trustee. The trust protector can also perform other duties including replacing the trustee, assuming those powers are granted in the trust document.

The appointment of a trustee and a trust protector are among the most important decisions you’ll make to start building a support system for your loved one. A skilled attorney and advisory team can help make this difficult process less overwhelming and will be indispensable to you and your family.

  1. Living Arrangements

As your child ages, don’t wait to start looking for housing arrangements. You’ll want your loved one to be comfortable with the new living arrangements, and you’ll also want to help when you are able. It may be really difficult for your family, but imagine how much harder it would be to find housing when you’re gone.

  1. Letter of Intent

How will your child be cared for if you were no longer alive or able to do so? One thing you can do is start writing down information about your child that would be helpful to a new caregiver. Doing so is known as writing a letter of intent, and it’s one of the most important documents you can prepare for your child with special needs.

The letter of intent should include an overview of your child, information about daily schedules, diet, medical care, education, benefits received, employment, social activities, religious activities, behavioral issues and even funeral arrangements.

Once you address these issues, you may find comfort in knowing you have taken the time and effort to do your best to plan for the transition your child with special needs may ultimately confront.

Jeff Vistica, CFP™ (Certified Financial Planner), ChSNC® (Chartered Special Needs Consultant), AIF® (Accredited Investment Fiduciary) is the co-founding partner of Valiant Partners, a registered investment advisory firm, located in Carlsbad, Calif. Valiant Partners devotes its practice exclusively to serving the needs of parents with special needs children. Visit valiantfutures.com.

Meet John Cronin: The Founder of John’s Crazy Socks

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John and his dad hugging

During Fall 2016, John Cronin began his senior year of high school and like most high school seniors, John began looking at his options for the career world. He was currently studying retail and customer service, but he also wanted to work in an atmosphere that was creative and enjoyable. Not liking any of the options that were currently available to him, John decided that the best way to find his ideal workplace was to create it himself.

That’s when John decided to team up with his father, Mark Cronin, who created small businesses online. After bouncing around creative business ideas that they could start, John decided that he wanted to start a sock company that specifically sold “crazy” socks.

“I wore crazy socks my entire life,” John said of his choice in business. “They are fun, colorful and creative. They let me be me.”

And thus, John’s Crazy Socks was born, an online sock company specializing in the exact brand of sock that John had come to love himself. The two got right to work in setting up their e-commerce platform, finding sock suppliers to support John’s dream and even shot some commercials that they posted to Facebook.

Despite technical difficulties on their first day, John’s business took off from day one. Orders began piling in from local members of his community who were made aware of the new business from the company’s Facebook videos. With such a positive response, John decided to step up his customer service game and make the first batch of deliveries extra special. He packaged each sock order in a red box accompanied with candy and a handwritten thank you note and made many of the first deliveries personally. As he arrived on the doorsteps of his customers with their orders, his customers began to post their purchases on social media, creating exposure and eventually attracting a larger demographic. In the first month of business, John’s Crazy Socks had shipped over 450 orders and earned over $13,000 in revenue.

But even with the excitement and success that came, the two businessowners decided that they wanted to do more than just sell socks, they wanted to help the organizations that were closest to them. So, from the beginning to now, 5% of all sales are donated to the special Olympics, one of John’s favorite organizations. From there, the duo decided that they wanted to expand their advocacy and create “awareness” themed socks. 10% of profits from these specially-themed socks support awareness efforts for Down syndrome, cerebral palsy, autism, Alzheimer’s, breast cancer and more.

“Everything we do is designed to spread happiness,” their mission statement reads. “The more we can do for others, the more we can make people happy, the better off we are.”

Entering their fifth year of business, John’s Crazy Socks is thriving now more than ever. Their inventory has expanded to include home apparel, mugs, greeting cards, accessories, masks and customizable socks. Customers can even sign up for a sock subscription club that delivers a new pair of crazy socks to your doorstep every month.

Additionally, the business strives to follow its four business pillars: Inspiration and Hope, Giving Back, Socks You Can Love and Making it Personal. Through these four pillars, John and Mark have additionally began to take part in speaking engagements, facility tours and social events where the two men advocate for people with differing abilities, especially in the workforce.

“We learned three things,” Mark said of his business venture with his son, “People want to buy socks; people want to buy socks from John, and this young man and this old man can sell socks.”

To order your own pair of socks and to learn more about the business, visit johnscrazysocks.com.

Online Recruitment of & Outreach to People with Disabilities: Research-Based Practices

LinkedIn
Three people looking at a computer in an office

Effective recruitment and outreach are necessary to improve an organization’s pipeline of qualified applicants with disabilities. EARN’s evaluation of the research literature uncovered important implications in a number of areas, including: online messaging, outreach and recruitment, application processes and accessibility, and establishing partnerships to broaden talent pools. The following is a summary of research-based practices and elements of online outreach that increase the likelihood of attracting individuals with disabilities during the job application process.

Online Messaging

Website features and approaches to online recruitment play an important role in influencing job seekers. Often, a company’s website may be the first step to forming perceptions of person-organization fit. Website messaging can affect how job candidates perceive and respond to online application/selection tools such as personality tests, work samples, and situational judgment tests. The perception of bias can even dissuade applicants with disabilities from applying to positions. Early-stage reactions to a company’s disability messaging can also influence employee decisions to disclose their disability to the employer. Their comfort-level in doing so can serve as an informal indicator of an employer’s success in achieving a supportive and inclusive workplace culture. Applicant reactions can include perceptions of fairness and justice, feelings of anxiety, levels of motivation, and a range of other experiences. Increasingly, researchers have been applying a justice lens to applicant reactions, looking at how interaction with online application/selection processes influence factors like employer attractiveness, applicant intention to accept the position, and whether an applicant would recommend the employer to others. There is growing evidence of additional relationships between applicant reactions and hiring outcomes, including acceptance of job offers, performance on selection tests, and possibly even job performance.

A content analysis of 34 corporate social responsibility reports from organizations nationally recognized for their disability inclusion efforts found that four practices were commonly used to promote disability inclusion efforts:

  • Diversity and inclusion statements
  • Employee resource groups
  • Supplier diversity initiatives
  • Targeted hiring and recruitment plans

Corporate social responsibility plans, in themselves, often highlight publicly desirable organizational practices, and are used frequently for the purpose of marketing and recruiting talent.

A study that analyzed the web content of 30 randomly selected Fortune 500 and Fortune 100 companies rating them for perceived openness to employing people with disabilities reported that several companies exhibited:

  • Message inconsistency
  • A lack of disability awareness
  • Weakly navigable, inaccessible websites
  • Difficult to locate accommodations information and diversity statements
  • Web-based recruiting constraints that exclude or alienate potential applicants with disabilities

Outreach & Recruitment

Disability-focused recruitment plans play an important role in advancing workplace inclusion and overcoming discrimination or bias in the job application process Recommendations from the literature focused on developing more sophisticated career websites that highlight the organization’s hiring goals, include employee testimonials, and give potential recruits deeper insight into the company’s values and policies. Researchers suggest personalizing recruitment processes by allowing candidates to build personal accounts on the website that go beyond an application form or procedure, and engaging in applicant tracking that involves recruiters and other collaborators, rather than relying solely on algorithmic filters. Recruitment practices, corporate advertising, and firm reputation all have direct effects on applicant pool quantity and quality. Organizations with comparatively high existing levels of advertising and reputation, such as more detailed recruitment ads and employee testimonials, are more impactful at broadening applicant talent pools. Technological practices, such as social media recruiting, can also limit talent pools by filtering out qualified candidates with disabilities. In one study of job seekers with disabilities, 50 percent of respondents reported using social media as part of their job search process, but of those, 40 percent experienced accessibility or usability issues, such as features they could not access at all or that were not user-friendly. Research also shows that organizations benefit from frequently auditing their hiring practices for continuous improvement and inclusivity, but this practice does not often occur.

Application Processes & Accessibility

One assessment of job seekers with disabilities’ experiences using eRecruiting tools found that 46 percent of respondents rated their last experience applying for a job online as “difficult to impossible.” Common challenges included complex navigation features, timeout restrictions, confusing or inconsistent instructions, and a wide range of general accessibility issues. Here are some of the things that made eRecruiting tools difficult to use:

Reliance on text embedded within graphics to convey directions or important information

  • Lack of alt text
  • Applications requiring mouse input
  • Lack of closed captioning
  • Inaccessible CAPTCHA
  • Inaccessible upload features
  • Lack of information on how to request an accommodation

Experts recommended that employers approach accessibility from both a usability and a compliance standpoint. They also acknowledged barriers in the areas of technology, logistics, cost, and complexity or unwillingness to approach accessibility challenges beyond the job application form itself. Ideally, accessibility improvements should include processes related to job sourcing, pre-employment testing, digital interviews, and the need to improve or modify the accessibility features of off-the-shelf technology platforms. Read EARN’s Checklist for Employers: Facilitating the Hiring of People with Disabilities Through the Use of eRecruiting Screening Systems, Including AI to learn more about evaluating the effectiveness and accessibility of online recruiting efforts. EARN’s Disability Outreach and Inclusion Messaging: Assessment Checklist for Career Pages is a useful tool to assess your organization’s career page(s) to ensure they appeal to candidates with disabilities and highlight disability inclusion.

Establishing Partnerships to Broaden Talent Pools

A survey of 6,530 supervisors at private, nonprofit, and governmental organizations across U.S. industries identified several employer practices that supervisors perceive to be highly effective for recruiting and hiring people with disabilities. The study indicated that establishing partnerships with disability organizations is a highly effective means of identifying qualified candidates, yet only 28.5 percent of organizations had implemented this practice as a means of recruiting employees with disabilities. Despite the few organizations utilizing this strategy, 75 percent of supervisors reported that this practice would be feasible to implement.

Because HR professionals often play an important role in developing the recruitment pipeline and online recruitment strategies, they should be aware of community agencies that can provide qualified candidates. By collaborating with vocational rehabilitation service providers and local job placement specialists, employers can tailor placement efforts, develop conduits for new talent, and enhance organizational education and knowledge on disability hiring practices.

This can take the form of more formal linkage agreements and long-term partnerships, or simply posting on online recruitment boards/resources aimed specifically at job candidates with disabilities. For more information, visit AskEARN.org.

Source: EARN (Employer Assistance and Resource Network on Disability)

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Air Force Civilian Service

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Upcoming Events

  1. 2021 ERG & Council Conference
    September 15, 2021 - September 17, 2021

Upcoming Events

  1. 2021 ERG & Council Conference
    September 15, 2021 - September 17, 2021