On Disability Employment: Being My Own Boss

Beth her fifth Seeing Eye dog, Luna. It’s their Seeing Eye graduation photo, taken outside the Seeing Eye School in Morristown, NJ in January, 2020I lost my sight five years before the passage of the Americans with Disabilities Act. When I could see, I was the assistant director of the Study Abroad Office at a major university. That all changed when I was diagnosed with retinopathy –a rare disease that damages the retina. Eye surgeries we hope would save my eyesight proved unsuccessful, and when I met with my boss to discuss my return to work, she was evasive, never suggesting I couldn’t come back, only that we should wait a little longer, and that I should make time to learn Braille and develop new daily living skills first. That way, she reasoned, I “wouldn’t embarrass the office.”

After that? She put me off long enough for my employment contract to lapse and she simply didn’t renew it. We never had an honest discussion about the situation. She never voiced her specific concerns, and I never had the chance to assuage them.

After that, persuading other employers to give me a job was an uphill battle. I completed classes to learn how to use a talking computer, and Mike and I started spending our Sunday evenings together scanning the “help wanted” ads in our local newspaper. “Commercial airline pilot, probably not,” he’d tease, somehow managing to lighten up the dark mood that set in when I looked for work. “But here’s one,” he’d say sincerely. “Animal poison control hotline, maybe they’d hire you.”

When I emailed the animal poison control hotline the next morning for details about the job, I didn’t mention anything about my blindness. In their email response, they explained that the job required phone and computer work. Phones and computers are good with me: phones for obvious reasons, computers because any common PC or Mac can be equipped with speech capability.

I wrote back telling them I’d be available for graveyard shift, and they enthusiastically suggested I visit the office to fill out an application.

I was driven to the interview by a friend, and as she helped me with the printed application form you could hear a hushed, angst-ridden conversation in the background. The receptionist came and went. Another woman emerged from the back room, disappeared again, then finally, without so much as greeting me, launched into a shrill speech on how the job required legal forms be filled out for every phone call that comes in. When I explained how I could use my talking computer to create digital versions of the forms, complete them on the computer and print them out, she just sighed. “We’re in the process of computerizing and hope to be done in a few months,” she said. “But right now, it just won’t work.”

A few months passed. Mike spotted the ad in the paper again. I emailed the same contact and asked for another interview. No response.

This sort of treatment happened more times than I care to tell about. I don’t take it personally anymore, but it still can be painful and confounding. I’d love to tell you that all of this has changed since the Americans with Disabilities Act was passed, but current conversations with job-seekers who have disabilities tell me this kind of experience remains more of a rule than an exception. On the face of it, things may seem to have gotten better. And it has, in some ways: since passage of the Americans with Disabilities Act in 1990, the accessibility of public spaces continues to improve. But when it comes to hiring, as with other bigotries, changing the law is one thing, changing hearts and minds is another.

So how did I ever find work? Mike surprised me one Christmas with a talking laptop for home, and I became my own boss. I started writing, submitting my written pieces to magazines and National Public Radio, getting published in bigtime magazines and newspapers and ended up regularly recording essays for WBEZ in Chicago. Those successes boosted my confidence, and I found myself eager to get on with life.

When friends suggested I write a book, I accepted the challenge. A book project would force me to finally gather my cassettes, floppy discs and other computer journal entries together in one place. If I managed to get published, maybe I could parlay my literary success into a speaking career.

My memoir, “Long Time, No See” was published by University of Illinois Press in 2003, and the success of that book led to part-time work giving guest lectures at universities, leading memoir-writing classes for older adults in Chicago, and visiting elementary schools to talk about disability awareness.

In 2005 the Vice President of Digital Communications at Easterseals National Headquarters heard one of my essays on National Public Radio and hired me as a consultant to moderate this blog. I’ve been enjoying this work ever since.

I do all my work as a consultant now. My husband Mike helps me with technology issues, I enjoy mixing my work day with teaching, editing, writing and giving occasional on-line and in-person presentations.

My advice to people with disabilities looking for work? Put yourself out there, try new things, accept challenges. Give employers a chance to see what you’re capable of. After a while, they can’t help but notice.


My Role Model for Disability Employment Awareness Month

I hope you’ll read Peter Sagal’s piece in Chicago Magazine. But if you want a quick take on Jason Benetti, check out this animated video he did for the Cerebral Palsy Foundation.

October is National Disability Employment Awareness month, and it’s World Series month, too. What better time to write this homage to a talented professional with one of the most coveted jobs in sports?

First, here is some background.

Many of the things I take on are difficult to do without being able to see. Some are even scary. I used to keep that to myself, afraid that admitting it would give others license to put me in a disability “box” and assume I have limitations that just aren’t there.

Enter sports broadcaster Jason Benetti, a role model for me since 2018. That’s the year he started doing play-by-play alongside baseball analyst Steve Stone for NBC Sports Chicago. When it comes to living above and beyond the pigeonholes people try to squeeze disabled people into, he’s my guy.

This month, Peter Sagal, the host of NPR’s “Wait Wait…Don’t Tell Me,” wrote a piece about Jason for Chicago Magazine. The title of the story, “The Storyteller of the White Sox, is followed by this fabulous tagline:

If you follow the White Sox, you likely know broadcaster Jason Benetti was born with cerebral palsy. But that’s just the start of his story.

Jason was born 10 weeks early and spent his first three months of life in neonatal intensive care. Diagnosed with cerebral palsy as a toddler, he grew up in a south suburb of Chicago. Both of his parents are White Sox fans, and for Jason, doing play-by-play for the Sox is a dream job.

That White Sox gig is by no means the only broadcasting he does. Not by a longshot. If you’re a sports fan, you might have heard him on ESPN’s alternate “StatCast” telecasts, or broadcasting other Major League Baseball games, or doing NFL games and NCAA basketball, too.

Jason is smart and funny and calls the plays so well that I, his number 1 blind fan, can picture them.

And in his Chicago Magazine article on Benetti, Peter Sagal paints a pretty good picture in words, too. Here’s how Sagal explains the way Benetti — and many other people with disabilities — have to adjust our own attitudes sometimes. From the article:

Jason knows people stare at him. They always have. Jason knows that his legs are oddly curved, that he walks with a full-body hitch in his step, and that his eyes point in two different directions, making people who don’t know him think he’s congenitally stupid. Jason is far too kind to put it this way, and too well mannered, but his remarkable career and potentially unlimited success isn’t a triumph over adversity. It’s a message to everybody who ever called him a gimp, to parents who told their children not to stare, to the flight attendant who asked him three times if he could handle the weighty duties of sitting in an exit row, and, while we’re at it, to the rival Jason beat out for a college radio sports director job who said, on a public forum, “Well, at least he will be a great magazine story.”

Ironies of ironies, Jason Benetti has inspired Peter Sagal to write a great magazine story here. Not one about “overcoming” a disability or working “despite” his disability, but one about his work in a highly-competitive field. When it comes to sports broadcasting, Benetti’s achievements speak for themselves.

My husband Mike, a big White Sox fan, read the Chicago Magazine story out loud to me so I wouldn’t have to hear it online in my talking computer’s robotic voice. When he got to a part where Sagal writes about Jason’s view of the tendency to make poster children out of people with disabilities, Mike said, “You know, I’ve always felt this way, too, but I never would have been able to articulate it like Jason Benetti does!” From the article:

I ask him about his role as a symbol of hope and triumph to the disabled and abled alike. He remains sensitive about it, especially the suspicion — fading but still lingering — that he got his chances to succeed only so he could make everybody else feel better. “You know those video clips where, say, the high school football team lets its disabled manager suit up and take the field and the other team lets him score a touchdown? I have an aversion to those. It’s like dropping food on a country in a famine. It’s nice and a good thing … but what’s going to happen after that?”

The part I myself related to the most came towards the end of the article, when friends from his days at Syracuse University chime in. One of them points out that back in college, Jason tripped an fell more than others did:

And we were walking one night home from a party, and he tripped and fell. And none of us cared — it was very normal. It’s not like he was being bullied by anyone. But that would ruin him for 48 hours. We would have to go home. … He was trying so hard to not have his disability be a factor. When it did, he … got angry.”

The angry part? I’m afraid that’s the part I could especially relate to. When coming back home after a walk with my Seeing Eye dog, I sometimes grope for a while before finding the door handle to get back inside. When crossing the streets here, we aren’t always exactly in the middle of the crosswalk. I know where the mailbox is, but I don’t always find the slot to put the letters in right away. I’m fine with making mistakes like that…unless someone sees me do them. Then I get flustered, worried how they’re judging me, frustrated. I read that last excerpt over again and see that my role model’s old college friend used past tense when mentioning Jason’s reaction: he got angry. That implies he doesn’t get that way anymore. Time for me to make that change, too. As this 2021 baseball season comes to a close, Jason and I have enough to feel frustrated and vulnerable and angry about: the Chicago White Sox didn’t make it past the first round of the playoffs!


Home and Community-Based Services Can’t Wait

Erin Hawley outside on a sunny day

Erin Hawley

I have Muscular Dystrophy which requires full care for all activities of daily living. Through home and community-based services in New Jersey, I am able to live in the community rather than an institution. I have a full-time job at Easterseals, where I work with the national staff as a Digital Content Producer. I also work on video game accessibility and disability representation as a freelance consultant. Beyond work, I spend time with my family and my loving partner of almost 7 years. I love reading and just redecorated my bedroom to look like a Victorian library – a dream I’ve had since I was a little girl. My family just got a Yorkshire Terrier named Madelyn who loves to run around my room and jump on my wheelchair. On the weekends, I play games with my niece who just started 5th grade, and help her with her homework.

I share all of that with you to let you understand my humanity. To show you that I am not just a number on a page, or a statistic. My life has value, as all lives do. If I lived in an institution, I would not be able to do any of the things I cherish. My physical and mental well-being would be in jeopardy. If you truly believed in the pursuit of life, liberty, and happiness for all, then do the right thing and fully fund home and community-based services. We need that funding so people like me, who are disabled and have great plans for their future, can realize those dreams.

This issue doesn’t just impact people with disabilities – it also impacts their loved ones and professional caretakers. Higher wages are needed to meet the demand of people living in the community. We can’t meet that demand if we don’t receive the full funding. Without it, that means even longer waitlists, and even more people dying in institutions. During the height of COVID, we lost so many people living in these congregate settings, making the demand for community care more pressing than ever.

Segregation is injustice. The disability community is paying attention to the vote. Make the right choice not just for us, but for the entire nation – because only a nation that is more just and equal is truly united.



Mature Workers: Hire for the Attitude, Train for the Skill

 A mature worker hanging clothesAn interview with Crystal Odom-McKinney, National Director of Senior Community Service Employment Programs (SCSEP), and Max Zielinski, Assistant National Director of  SCSEP at Easterseals discussing the importance of SCSEP services at Easterseals. Through this transitional employment program, Easterseals partners with community-based non-profit organizations and government agencies (host agencies) to provide participants with training opportunities to update their skills. During time in SCSEP, job seekers work with Easterseals staff to target and achieve personal employment goals. 

What is the Senior Community Service Employment Program (SCSEP) at Easterseals?  

Crystal: The Senior Community Services Employment Program (SCSEP) is a federally funded program through the United States Department of Labor that assists low-income mature job-seekers, 55-year-old or older, in building their skills to becoming employed in the workforce. This government funded program has been around since 1965. Easterseals has been a part of SCSEP for the past 18 years.  

What are some of the best things about hiring older workers? Why should companies consider this untapped market?  

Crystal: Mature workers are reliable, they are dependable, experienced, and trustworthy. They add so much value to any company or organization. That diversity in the workforce is crucial. A lot of times mature job-seekers are cross-trained over the younger generation with the soft skills that are especially important in the workforce such as being extremely punctual, and having interpersonal people skills. That is an area that our mature job-seekers can ace their younger counterparts in.  

Max: Also, their life experiences, just bring a different perspective. Mature job-seekers have been through many different life events, and they just have a different view on things. A company or organization can tap in on that and come at any issue with this different point of view. 

A lot of our folks are very punctual; they will show up maybe 15 minutes to a half hour before they are supposed to be at a meeting. That’s awesome! They bring a zest for being involved. That is a fantastic asset to bring to a company – wanting to be there, wanting to learn.  

Crystal: Hire for the attitude and train for the skill.  

Max: Our folks have great attitudes, and they are very trainable. They love to learn new stuff. They know the importance of learning because that’s how you keep going in life. I look at it this way – they may think they are old, but, from the perspective of the universe, we are all super young.  

Crystal: Mature job seekers want to be active and vibrant; they want to be involved in community engagement. And they want to fulfill that purpose. A lot of careers that our SCSEP participants are closely connected to, during this season in their life, are around community service, non-profit, and social services—because they want to give back. It’s a sense of belonging that they never knew they had. Because they love to give back and they love to help. They really do well in those environments. 

What is your advice to a mature job-seeker who is concerned that their age might work against them while on the job hunt? 

Max: We tell job seekers that you have a lot to offer an employer. Highlight what you bring to the table– years of experience, being on time, dedication to getting the job done. We always tell mature seekers to know that they are an asset, rather than an “older worker.” I always tell job-seekers that it’s a numbers game. The more places you apply to, the closer you get to your launching point. The next job could be a stepping stone to another career! If there is one thing the SCSEP program does, it really works to improve people’s confidence and let them know that they have a lot of self-worth to bring back to the workforce. That confidence is what we work to instill in everybody.  

Crystal: The job market is amazing right now. There are jobs out there. Think about everything that you bring to the table. Your wisdom, your experience and your patience highlight valued assets in the workforce. We hold up a mirror to our job-seekers and tell them this is how valuable you are, and this is what you bring to the plate. 

How has the pandemic affected the employment status of the aging community in the SCSEP programs?  

Crystal: During the pandemic, our Easterseals staff had to pivot to working virtually. What’s more amazing is that our job seekers also pivoted to virtual as well. Many of our mature job seekers learned Teams, and Zoom. Easterseals Oregon has a weekly town hall where over 100 mature job seekers are on Zoom, in the chat box, and actively participating. Our mature job seekers have bounced into a state of resiliency. That was really a testament to how they learned and how they continue to learn. 

Moving forward with the job market, it’s been interesting. Depending on how open your state is, job-seekers are pivoting to a virtual experience. We are working more to make sure their toolboxes are equipped with the skills necessary to become employable, that relates to virtual employment. We have training and workshops on how to show up to virtual meetings, and have a Zoom background. We also have mature trainers who can speak side by side about their experiences in navigating through the pandemic. We have had a lot of successes, but we still have quite a way to go. 

Has the pandemic shown that there is a technology disparity among mature job-seekers? 

Max: Yes. The pandemic highlighted that our population definitely needs more access to technology because, for some of them, getting on to the internet might be an issue. Going forward, we need to make sure we can find funding or find opportunities for folks to get computers. 

In New Jersey, we were really fortunate. We found an organization that was started by high school student – he refurbishes computers, and we were able to get 50 of our participants computers so that they could get on the internet. We are looking to see if we can expand that into our New York program.  

As far as employment, we did have a streak going prior to the pandemic – we were getting a participant a job a day for 5 straight years! When the pandemic hit, we were getting a job every other day. In 2021, we are getting back on track with getting a job a day for our participants, which is exciting. We are keeping our fingers crossed that continues.  

Is there a link between any SCSEP programs and the push for Congress to pass the infrastructure bill that would fully fund Home and Community-based services? Would any of the SCSEP programs be enhanced if this bill were to be passed? 

Max: Improving the internet and cyber infrastructure would open that up to more communities and give our folks more opportunities to get involved, to look for employment, and to be able to be more a part of their communities. In the Build Back Better Agenda, there is funding for the SCSEP programs in there and hopefully it will get through appropriations – keeping our fingers crossed. Moving forward, hopefully there is more funding coming down the pipeline for employment-based programs that SCSEP does benefit from. 

Crystal: Additionally, when infrastructure of our roads is improved, that will enable our job-seekers to be more accessible to opportunities in their communities. 

What SCSEP programs at Easterseals are you most proud of and why? 

Max: All of them. I am proud of all our programs. Since we are a national organization, I look at all of our programs like a family. They all bring different things to the table, but the part that really keeps me motivated and going is getting to share in their triumphs. Meeting with the participants that we serve, and listening to their stories, getting to talk to them, and let them know that we are here at the national level to help. 

What do you hope to see next for the SCSEP programs? 

Max: We are always looking at ways to increase the reach of SCSEP because, with the funding that we get, we are serving probably less than 1% of the population that would be eligible for SCSEP. So, there are a lot of people out there who probably don’t know about the program, or we can’t serve them because we don’t have the funding to do that. It’s kind of a shame because we are the only program that serves older Americans and mature workers.  

The population does seem to be getting older every day. More people are realizing that retiring at 65 is just not the reality anymore. People are living a lot longer now, so you can be engaged and continue on and have a fruitful life.  

What do you want mature job-seekers to know about SCSEP services at Easterseals? 

Crystal: Easterseals is here, and here to stay. We are here to help break barriers as it relates to mature job seekers and get them what they need by whatever means necessary — access to technology, increased access to training, and employment opportunities. We are here to dispel myths and work directly with employers to educate them around the value of mature workers and workers with disabilities, while celebrating our continued victories of employment and training opportunities.


Listen Today: How an Advocate Saw Her Future as a Young Person with a Disability

My 15-year-old author friend Anja Herrman, a.k.a. DJ Mermaid, is going to be on WBEZ, Chicago Public Radio, today, September 22, 2021 at 3:44 pm. A young lady wearing glasses and a cloth face mask with flower printI wrote a post here years ago when a conversation Anja had with her aunt first aired on StoryCorps, and today I’m sorry to report that the national StoryCorps project has decided to permanently close its Chicago StoryCorps booth. Since they first opened in 2013, StoryCorps Chicago has recorded and preserved more than 4,000 facilitated interviews in the Chicago StoryBooth, but that all ends this week, when StoryCorps Chicago is ceasing operations.

But rest assured, there is some good news to this blog post! To honor its official end this week, 10 StoryCorps pieces produced by WBEZ’s talented soundman Bill Healy over the past seven years have been chosen to air again, and guess what? One of them is that conversation Anja had with her aunt back in 2015!

Anja’s five-minute story will play on WBEZ today, Wednesday, September 22, 2021 at 3:44 PM CST. Anja was only nine years old during that conversation, and I have it on good sources (Anja’s mom!) that the piece WBEZ airs today will include a little update from Anja now, at age 15.

I came to know Anja especially well when she was nine years old and learning at home during a casting program (casts on both legs from her hips down to her ankles). She was schooled at home for two months back then, and I was her at-home writing tutor. Many of her completed assignments have been published as guest posts here on our Easterseals National blog, and you can read this post from 2016 to learn how and why she had all her posts back then published under the pen name DJ Mermaid.

A published writer and disability activist these days, Dj Mermaid goes by her real name now: Anja K. Herrman.

Anja was the winner of the Primary Division Playwright Discovery Program at the Kennedy Center in 2019, and a keynote speaker at the #EachforEqual International Women’s Day Event in 2020. Her work has been featured in Magnets and Ladders, Input Magazine, the Disabled Writers blog and the Huffington Post.

Anja uses a power wheelchair to navigate her public school now, she’s learned a lot about ableism in the past six years and is sure to have a lot to say when StoryCorps asks for an update. Join me by tuning in to hear it all on WBEZ in Chicago or asking your smart speaker to “play WBEZ” at 3:44 central time today, Wednesday, September 22, 2021.


The Makings of an Accessible Vacation Resort Experience

My family makes it a priority to take a vacation together every year. Some vacations are smaller (Wisconsin Dells is just a three-hour drive from Chicago, for example), while others have been a little fancier. For about five years now, my parents have allowed significant others to tag along, and this year was my boyfriend Juan’s very first vacation with my family.

This year we’d all decided to go to the Excellence Riviera Cancun. A friend who is blind had his honeymoon there, but his wife could see, so I didn’t honestly think to ask him about how accessible and accommodating the resort was. My parents had been there a few times and spoke highly of the customer service they received there, so my expectations were pretty high.

I feel confident enough traveling with Juan, and I knew we could always ask for help if we needed it, but when my dad made our reservations, he made sure the resort understood that our group included a blind couple. I couldn’t be sure what this might mean in terms of the services that would be provided to us or whether it’d make a difference whether they knew in advance or not. In the end, though, I was glad my dad went ahead and told them.

One of the many things I love about Juan is that he’s a people person and has no problems talking to strangers. I knew he’d be up for this adventure in Cancun.

Another thing I love about him is how thoughtful he is. I’ll give you an example. Juan lives in Houston, I live in a suburb of Chicago, and he flew in to Chicago on his own the day before we were leaving for Cancun so our family and our significant others could all travel from Chicago as a group the next day. And then there’s this: the day my parents and I went to Midway to pick Juan up, he was able to find assistance from the gate so quickly that he was already at baggage claim by the time we’d arrived.

Finding his luggage was easy, too: his mom texted me earlier that morning with a picture of it so my parents knew what to look for.

In Cancun, we stayed in the swim-up suites, which meant each couple had their own private terrace complete with table and chairs, a lounge bed, and a ladder into the public pool. When my mom showed us around our suite (including the terrace), she pointed out a small patch of rocks next to the ladder. What a great landmark! When navigating around the suite, neither of us had our white canes with us. We decided that any time we’d be heading to the lounge bed or the pool, at least one of us would have our canes and see if the patch of rocks would help us get our bearings.

We spent a lot of time out on our terrace. On most mornings, we’d order room service for breakfast and eat outside. Afternoons were spent lounging by the pool, and sure enough, using the rocks as a landmark worked out beautifully. I used my cane in my right hand while holding Juan’s hand in my left, trailing around the table and chairs and the lounge bed before reaching some grass. After a short trek through the grass, we’d come across the rocks, and to the left of that was the ladder. I’d hit the ladder with my cane a few times so Juan would hear where it was.

“Now I have to figure out where to put this,” I thought out loud to myself during our first venture to our side of the pool. I wanted to set my white cane down by our ladder while we were swimming, but I worried someone might move it. Finally an idea came to me. I could fold it up and attach it to the side of the ladder. That way, we’d know the ladder with the cane was the one that led to our suite. No one would be able to move it, and it wouldn’t get lost. This video by Perkins School for the Blind shows how a white cane can be folded up and attached places. This worked out well and served as almost a public service announcement that we were blind. Other guests would approach us in the pool and ask if we needed anything (like a raft to float on, for example). One nice man even came up to us to tell us that the pool was pretty crowded, so if we got turned around there would be several people available to help us. One time I was in the pool by myself, and when a woman saw me climb the ladder and feel for my cane, she came up to me and politely asked, “Excuse me, are you looking for your cane?” What a pleasant surprise! Not only did she call it a cane (normally people call it a stick), but she asked me if I needed help rather than just assuming I did.

The resort also had a coffee shop. Those of you who have read my previous posts here on the Easterseals National blog will not be surprised to hear I was there every day. One morning, Juan and I decided to try and see if someone from the hotel would be willing to escort us there, not wanting to rely on my parents or sisters to walk us. We called the front desk, and when Juan explained we were both blind and asked if someone would be willing to assist us. They said, “Of course!” They were very prompt and at our door in about 5 minutes. This quickly became a part of our morning routine.

The vacation flew by, and he didn’t go back to Houston right away: two days after we arrived back in Chicago, I accompanied my dad to drop Juan off at the airport.

When our friends (his from Houston, mine from Chicago) ask how our trip went, both of us excitedly tell them about the great service, and how this would be an ideal vacation spot for blind and visually impaired individuals. Not only is it great that it’s all inclusive (so once you arrive, there’s so much to do that you don’t need to leave the resort), but the staff is very friendly and more than happy to help.
Our first vacation together (and his first one with my family) was a huge success!!


Caregivers Deserve Better

Beth and Seeing Eye Dog Luna posing in a snowy park, Beth in a long red winter coat.Our son Gus was born in 1986 with significant physical and developmental disabilities. He lived at home with us until he was 16 years old. After that, he was cared for at a group home in Watertown, Wisconsin.

Until December of last year, that is. That’s when my husband Mike and I were notified by the organization who ran Gus’ group home that they would be permanently closing their residential operations, at least partly due to the financial burdens COVID had caused.

We thought Gus would be living under their care for the rest of his — and our — lives. The news that the home would be ending its housing services proved to be an anxious daily worry for months to come.

COVID vaccines were not readily available yet in December 2020. COVID protocol did not allow us to visit Gus in-person then, and Mike and I were already pretty stressed out by living through a year of pandemic-related unknowns. Adding this new unknown — where would Gus live now — nearly toppled us.

A case worker was assigned to find a new placement for Gus, and COVID protocols meant we would not be allowed to visit any of the facilities the case worker found. Not in-person, at least. Our only option was to visit them virtually, and Zoom was the only way to meet and talk with the people who might be caring for our son from here on.

When the case worker found another group home with an opening, I was all for it. It was closer to us than the other one, and I feared we wouldn’t find anything better. But Mike wanted to hold out. He hoped against hope that Gus’ original home would find an organization to take over the house he was familiar with — the one he’d lived in for so long. That would be ideal, Mike said. Gus wouldn’t have to move, and current staff could even be retained.

But why would any organization take over the house Gus lived in during COVID times? Even before the pandemic hit, low pay and hard work had already been motivating staff members to leave for higher-paying jobs. One constant throughout all our son’s years in a community setting: direct-care providers caring for him have always, always been underpaid. Over the years we learned to expect high staff turnover.

Low pay causes instability in the lives of the workers and the lives of the people they care for, and the necessity for social distancing and mask-wearing made this past year even more difficult on the workers and the individuals and families who rely on them.

So I was pleased to hear President Biden had proposed something in his infrastructure plan to help the caregiving community: his original proposal included $400 billion in federal spending for Medicaid’s home and community-based services program, a program our son Gus participates in.

That all changed, unfortunately, when the president and a group of bipartisan senators recently reached a compromise to drop this aid.

But back to Gus. Mike argued that if we held out, didn’t place Gus in a new home, and another organization did take over operations of the house Gus was at, Gus would be likely to keep the same caseworkers, staff, and doctors who already know him. Mike had a good point there. Finding doctors and dentists who are willing to treat people like Gus is not always easy.

And then it happened. On April 28, 2021, we received an email from Gus’ original home announcing that they had agreed to sell to another organization.

Mike almost broke down crying while reading the email out loud to me. “I must have been walking around worrying about it all the time,” he said later. “I guess it was weighing on me more than I thought.”

COVID restrictions were loosening up then, and after a year apart, we could finally come visit Gus again, this time with his house under new ownership.

Typically, we call the house on the drive up to let them know we’re coming — and to be sure they’d be there and didn’t have some outing planned. The day we visited, the house phone was busy. And busy. And busy. Without being able to get through on the phone, we showed up unannounced.

Gus’ house is actually a duplex, with 8 residents, four bedrooms, a living room and a kitchen on each side. That way staff members can toggle between as necessary.

When we arrived that day and rang the bell on Gus’ side, there was no answer. I worried they were out on an outing. Maybe we’d missed him.

Mike went to the other side then, and a staff member opened the door. All the residents were just finishing lunch. Two staff members were usually at each side of the duplex, but this time only one staff member was there to take care of both sides. When Mike explained that we’d tried to call, she apologized and said she’d just realized the phone was knocked off the hook. And the doorbell we’d been ringing? It was broken.

Mike and I went to Gus’ room and found him lounging on his couch, well groomed, and happy to see us. We never found out why only one staff member was there, but we could make an educated guess.

Funding home-and community-based care for the most vulnerable Americans shouldn’t be a partisan issue. Lawmakers need to do everything they can to work this aid back into the federal budget. Caregivers and the people they care for deserve it.


Remote Learning and Higher Education from Home: Benefits for Students with Disabilities

Erin at a table reading a bookErin Hawley, Digital Content Producer for Easterseals and the host of Disability Readathonreceived her master’s degree in English from home. Although her story predates the global pandemic, her experience shows the ways that we can make technology and alternative education formats work for students with disabilities, and not against them.

What did you receive your master’s degree in? 

In a fully remote learning program, which was accessible to me, I received my master’s degree in English with a concentration in Multicultural and Transnational Literatures — which is one of my passions! 

What helped you make the decision to pursue your master’s degree from home?  

When I went to school for my bachelor’s degree in 2001, I lived on campus and drove my wheelchair to and from class every day. While I’m glad I had the campus life experience, it was logistically very difficult for me as I had to regularly navigate flooded or snow-covered walkways with my wheelchair and/or had to leave class early to attend to my medical needs. 

Furthermore, I also dealt with professors who refused to accommodate me in labs (I started off as a biology major!), by not allowing my nurse to assist me with certain class activities. It was, at times, very stressful. I found myself taking fewer classes each semester to make it easier on myself, so, I graduated after 5 years with a bachelor’s degree in English. 

After I graduated, I was not finding any stable jobs that aligned with my bachelor’s degree and I thought getting my master’s degree would open more opportunities. However, I knew that campus life was not a possibility for me anymore since I did not have reliable accessible transportation, and I was over the age of 21 years old resulting in me losing most of my home-care nursing hours through my medical insurance. I require 24/7 care if living by myself.  

Therefore, I started looking for online programs to pursue my master’s degree in English. At first, finding the right online program that would lead to an accessible career for me was difficult. That meant, for a long time, I lived on SSI and any freelance writing gigs I could find. I did not have the financial freedom I wanted, and I hated having to ask my folks to help pay for my student loans. 

I do have to say, in this regard, I am very privileged since a lot of families would not be able to offer financial support to relieve the pressure of student loan debt. Additionally, it’s important to note that a lot of people with disabilities may not be able to live with their parents for a myriad of reasons, whereas I was able to.  

Thankfully, in 2012, I found a reputable University that had a fantastic program where I could pursue my master’s degree in English, fully remote. So, again, with the help of my family and more student loans (I’ve just accepted the fact I will be forever in debt) — I enrolled!  

It was all worth it, because after graduating in 2016, that degree helped me land a fantastic job here at Easterseals as a Communications and Digital Content Producer, where I use my writing and researching skills daily. Additionally, my position is accessible to me, as it is fully remote! 

If receiving your master’s degree from home was not an option, would you have pursued higher education in the physical classroom?  

No, I wouldn’t be able to. Due to the nature of my disability, transportation to and from a campus is difficult. Additionally, I would not be able to live on campus either because I require 24/7 care, and my care hours have been cut due to my age and medical insurance limitations. In a nutshell, on-campus learning is not accessible to me. Remote learning is accessible to me and enabled me to pursue higher education.  

In your opinion, how does remote learning/working help the disabled community? 

My experience that led me to remote work and remote learning is common among the disabled community. Remote opportunities are vital for people like me, who cannot drive, who do not have PCAs, nurses, or a slew of other reasons that make in-person learning/work impossible. Remote options open more opportunities for education and employment to people in the disabled community. 

Remote learning/working is accessible to me and made it possible for me to achieve higher education and gainful employment. 

Unfortunately, accessibility, even when it’s officially regulated, is still largely at the discretion of nondisabled people. Even though I received services and supports from the disability department for my undergraduate degree, I still encountered ableist professors, and had difficulties navigating the campus. 

It’s important to note, that just because it’s possible to learn/work remotely, it doesn’t always mean that it’s automatically accessible. Nothing is ever free of ableism. I urge people with disabilities to constantly advocate for their accessibility needs. This is vital. Additionally, institutions and companies, with and without remote options, must constantly evaluate their accessibility. It’s crucial that institutions and companies have open communication so when a person with a disability advocates for their own accessibility needs, they are met with support and understanding, which leads to change, which leads to accessibility, which leads to progress for all people with disabilities.  

In your experience, do you think there is any difference in the quality of education — learning from home versus in the actual classroom?  

I do! I found remote learning more accessible to my needs, and so I feel like the quality was better. I retained more of what I was studying because I didn’t have to worry about all these extra ableist, inaccessible things that weighed so heavily on me during my undergraduate experience. 

I need to mention that people with different disabilities might not have the same positive experiences as I did with remote learning. Everyone learns differently, and everyone has different accessibility needs. However, in my experience, remote learning was beneficial to my accessibility and learning needs. 

How has technology enhanced the remote learning/working experience?  

Advancements in technology have made remote learning and remote working faster and more efficient for me, personally…. and so much has changed! 

When I was working towards my bachelor’s degree in 2001, I didn’t own a cell phone and Zoom didn’t even exist yet. Even when was pursuing my master’s degree in 2016, Zoom wasn’t a thing.  

In my master’s program, everything was done through message boards and email, which was both great for my physical disability and my anxiety. I was able to take my own notes and use PDFs instead of bulky and heavy textbooks. I was able to attend to my medical needs without missing class. 

Now that we have even more advanced technology, I feel like anything is possible, as long as it’s accessible.  

As noted in the Easterseals Study on the Impact of COVID-19 on People with Disabilities, many disabled people may not have access to broadband internet and technologies needed to pursue remote learning or work. It’s important we, as a society, meet those challenges for full diversity, equity, inclusion, and accessibility. At Easterseals, this is something we are committed to. 

Any thoughts on productivity levels while remote learning/working?  

Distractions at home are sometimes a struggle, which can impact productivity. I found that making lists and sticking to them daily was a huge help in my productivity. Now I probably work too hard! Which is its own problem, but I have since set a strict “no working after 6pm, unless absolutely necessary” rule that helps keep me in check. This is an aspect of self-care, which is so important.  

What are your thoughts on the importance of socializing while remote learning/working?  

I’m a complete introverted homebody, so I don’t mind missing out on a full classroom or office. I know that isn’t the case for a lot of people, which is why apps like Zoom are so vital to staying connected. 

What is your advice on how to best prioritizing mental health while remote learning/working?  

Remember to step outside or away from your desk if you need it. Set working/studying hours and stick to them. Both you and your work will be better for it. 

As the world grapples with the global pandemic, remote learning/working has become the norm. In a post-pandemic future, do you think remote learning/working will be here to stay? Why or why not?  

I really hope it does. So many opportunities became available for people looking for work, especially adults with disabilities. I do hope that young kids can start going back to school safely, because I know many are falling behind because they need that social interaction and one-on-one support in the classroom – but a remote option for college, or even high school students, should always be available. 

What are the key takeaways society can gleam from the experience of remote learning/working? 

The pandemic showed that productivity of remote work is still high, in many cases higher, because folks are more comfortable in their own homes. People don’t have to waste time and stress in traffic. Employee mental and physical well-being leads to success. 

What aspects of remote learning were the easiest to adapt to? What were the most challenging? 

Being able to learn at my own pace in a comfortable environment was the easiest to adapt to.  

The most challenging thing to adapt to while remote learning (and working!) is my loud family who doesn’t quite understand, “shh, I’m working/studying!” Somehow their voices always carry through two closed doors. Sometimes, staying focused amidst that can be a challenge. 


Parents of Kids with Disabilities are Asking Schools to Make up for Lost time

Two open books in a libraryA story I heard on NPR’s Morning Edition was heartbreaking for me to listen to. Parent after parent interviewed for the story reported that during the pandemic their children with disabilities went months – and in some cases, more than a year – without receiving the special education services they need to learn. This also supported by a recent Easterseals study about the impact of COVID-19 on people with disabilities. From the responses of those surveyed, almost all children with significant disabilities (93%) have missed milestones due to the pandemic compared to around half (54%) of their non-disabled peers.

Our son grew up with severe cognitive, developmental and physical disabilities. Gus is 35 years old now and lives in a group home, and the skills he does have – he can push himself around using a wheelchair, he vocalizes, and he recognizes our voices when we come to visit him – are all thanks to the dedicated teachers and therapists who worked with him day after day at the public schools he attended over the years. So I could easily believe what family members were saying to NPR reporters: without the usual access to educators, therapists and in-person aides, they’ve seen their children slide backward. From the story:

More than 7 million school children receive special education services nationwide – at least they did before the pandemic. The services covered things like speech, occupational and physical therapy and behavioral counseling. But when schools closed in the spring of 2020, many of these vital services stopped. And more than a year later, in some places, they still haven’t fully restarted.

Parents interviewed for the story said they are demanding help, arguing to judges, state departments of education and even to the U.S. Department of Education that schools are legally required to do better by their students with disabilities. “In complaints filed across the country, families say their children have lost ground, and schools need to act now to make up for the vital services kids missed.”

The story ends with reporters pointing out that schools are insisting they did the best they could, and they’re pledging to families that during the new school year they’ll provide some make-up services in good faith. In the meantime, advocates are pushing back, saying that after 15 months, many children are still waiting for the help they’re legally entitled to. “And in the middle are families, frustrated and confused,” reported NPR’s Cory Turner, concluding that parents of these students are, “certain of nothing but that they want the best for their kids.”

I know exactly what they mean, and I can’t imagine what these past 18 months have been like for them. Well, actually I can imagine. I’m glad they survived it all so far, and I appreciate their willingness to talk about it all on NPR. I hope the policy makers, the boards of education, and people all over the country were listening.


31 Years After the ADA Became Law, It Is Time to Think Differently About Inclusion

historical photo of a protest attended by people with disabilities, people using wheelchairsToday marks the 31st anniversary of the landmark Americans with Disabilities Act of 1990 (ADA). As we honor this historic legislation and the progress we’ve made since, we also find ourselves at a difficult and transitional time in the world. For children and adults with disabilities – who represent some 61 million Americans – there is no doubt they have been disproportionately impacted by the pandemic, especially when it comes to healthcare equity, education, employment, and financial stability. Further, for disabled people of color, these hardships are only compounded.

Even before the pandemic, people with disabilities were already at a societal disadvantage. Historically under-reported and discounted, the disability community has long faced discrimination in:

  • Employment, with many employers not understanding the talent, skills and potential of people with disabilities.
  • Healthcare, with limited access to quality healthcare and a lack of general understanding or training by the medical community to adequately support their unique needs; and,
  • Society, with outdated and hurtful stigmas still rooted in the culture of our neighborhoods, schools and workplaces.

If we are to truly build back and move forward, we must ensure the people most affected by this tragic year receive the most support, with innovative, responsive and quality services and resources. Simply put, now is the time to urgently address these systemic barriers, once and for all.

Our communities are beginning to reopen, with many people starting to recover. For people with disabilities, the barriers to mend are much more complex and more urgent. To get to the core of these challenges, Easterseals commissioned Accenture to conduct a comprehensive national study to better understand COVID-19’s impact on the disability community. The findings are undeniable.

Take education, for example. Almost all children with significant disabilities (93%) have missed milestones due to the pandemic, compared to around half (54%) of their non-disabled peers. The first five years of a child’s life are the most critical time in their development, with these crucial years setting the trajectory of their entire lives.

People with disabilities are three times less likely to be employed, with this gap growing even wider during COVID. Additionally, the digital divide is acutely impacting people with disabilities. They are much less likely to use the Internet, have home access to broadband, or own a computer – the lifeline for all of us through this time.

Bottom line, if our communities do not properly address the inequities people with disabilities face during this emerging post-pandemic, it will have devastating short- and long-term consequences on their quality of life and wellbeing. Not to mention the negative and financial impact on society at large. Now, after 30+ years with the ADA, it’s time to reevaluate our approach to inclusion. Like any form of progress, critical gains don’t happen in one fell swoop – it’s going to take our continued effort, energy, and action to make our modern world more equitable, inclusive and truly accessible. We can no longer afford to look the other way and not recognize this important demographic of our society. We can, should, and must do better.

As a leading nonprofit provider of outcomes-based services, we are launching a comprehensive, nationwide strategic effort to modify, expand, and amplify our services to meet the very pressing and evolving needs of people with disabilities.

We cannot do this alone. We need employers, educators, government officials, community leaders, and local organizations to step up, drive solutions and do more to advance equity for all in our communities. Only when we do this together, will we ensure every single American is valued equally.