As our elected leaders in Washington squabble over the important details that should be included in the massive and impactful Infrastructure Bill, thousands of Americans with disabilities hold their breath. 

You see, this is the first time we have hope for the future for our immediate healthcare needs. 

Nearly 800,000 people – elderly and disabled – are waiting for home healthcare. 

An 80-year-old grandmother is caring for her elderly husband with dementia. 

A 60-year-old mother is caring for her 30-year-old son with quadriplegia. 

The last example is personal. I’m 32 years old. I have a spinal cord injury. I rely upon my 62-year-old mother for almost around-the-clock care. While we have a wonderful home healthcare agency that provides us with a nurse throughout the day, we have no evening coverage. We haven’t for 15 years. 

My mother – the strongest woman I’ve ever met – has been my evening caregiver for 15 years. Each night after she puts me to bed, I think to myself how “this is not fair,” and “we need extra help.” 

Unfortunately, home healthcare workers (RN’s, CNA’s, HHA’s) are paid incredibly less than what they could make at a hospital or a nursing home. In a world where home healthcare agencies are struggling to hire and maintain a full staff, it’s especially hard to staff evening care. So, we have gone without. 

Amplify my situation by 800,000 people. Amplify my situation by the 800,000 brothers, sisters, mothers and grandparents that will have to care for their family members. Remember that many of these people in need of care want to participate in society, independently, and continue or pursue employment. 

Personally, I work two jobs. My day job as a Diversity and Inclusion Outreach Specialist at Old National Bank, working to create a more inclusive atmosphere for people with disabilities in our company and the communities we serve. And, a part-time job as a City Councilman for the City of Evansville. 

I’m not special. I’m just a guy who has been provided enough care and opportunity to be successful. Yet, thousands of individuals just like me don’t have the care to get out of bed every morning. They don’t have the care to get them to their doctors’ appointments. Their family members don’t have a reprieve. 

Now back to the infrastructure bill. Do a quick Google search on the definition of infrastructure. “The basic physical organizational structures and facilities needed for the operation of a society or enterprise.” I don’t believe there is much argument that home health services directly amplify the operation of our society. 

Let’s help the almost 1 million people who simply want to participate in society. Let’s pass an infrastructure bill that is deeply thoughtful and will make an impact, likely on someone in your family. 

Contact your Senators, urge them to include funding for home healthcare. Contact your Congressman, do the same. Or, share this blog with a personal story, and educate your neighbors and friends on these important issues. We are all in this together, and if we advocate, share stories, and appeal to the hearts of people – we can make an impact. 

I 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.

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!

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.

 An 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.