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.

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. I 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.

Freepik

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!!

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.