In a lot of ways, Leah is like any other child. She has favorite toys, is eager to explore new things and is a bundle of joyful, rambunctious energy. Unlike most children, she was born with Joubert Syndrome, a rare condition characterized by underdevelopment of the cerebellum, low muscle tone and delayed development and speech.
Leah began receiving our early intervention services just after her first birthday and meets with her therapists four days a week. Such intense intervention means a lot of hard work for Leah, but her joyful resiliency through it all has infused her parents with great optimism for her future - that Leah will one day walk, talk, run and play sports.
At the start of therapy, her parents could not imagine her walking before the age of two or three years. At 20 months old, the family was shopping for gait trainers to help her begin walking. Her parents are incredibly pleased with the rate of development Leah has shown since starting physical therapy. Every week there is progress and they continue to set new milestones for her development. As her mother puts it, “we were thrown a curve ball in life, but I think we are knocking it out of the park.” At Easterseals, we couldn’t agree more. Through our early intervention program, Leah is receiving the therapeutic support she needs to reach her fullest potential and her parents are receiving the support they need to make it happen.
Thursday, December 2, 2021, 12:12 PM
In celebration of National Special Education Day, Team Easterseals is in conversation with Erika Wat…
In celebration of National Special Education Day, Team Easterseals is in conversation with Erika Watson, the National Director Childhood Development, Education, and Equity at the Easterseals National Office.
What is National Special Education Day? Why is it critical that we observe it?
National Special Education Day was first celebrated in 2005, which was the 30th anniversary of the Individuals with Disabilities Education Act (IDEA). It is important to acknowledge Special Education Day because nearly 14% of all public-school children—7.3 million children—receive special education services guaranteed to them by IDEA.
That is 7.3 million reasons to honor the hard work, the wins, and the possibilities of young people on their unique pathway toward fulfilling their potential. It is important that we observe this day to bring attention and awareness to the special education system to ensure that the most vulnerable students among us have access to everything that they need to be successful. It is important to highlight the children, people and families that are beneficiaries of this work.
What is The Black Child Fund at Easterseals?
The Black Child Fund was launched by Easterseals in the aftermath of George Floyd’s murder and the BLM movement from summer 2020. The Black Child Fund is focused on the intersectionality of race and disability and aspires to disrupt systems of educational inequity and improve long term outcomes for BIPOC youth with disabilities.
Easterseals aspires to be a thought leader and convener of people, ideas, and resources aimed at mitigating disparities that exist for BIPOC youth with disabilities in educational outcomes and social indicators of health and wellbeing.
What are the disparities that Black students and Black students with disabilities face in education? How is The Black Child Fund working to end those disparities?
Black students are the largest population in the special education system, and the most underserved. About 14% of all public-school students receive special education services. Of that 14% the largest percentage of those students identify as Black/African American. Despite being over-represented in the special education system, outcomes for Black children receiving special education services lag behind those of every other group. For example, 72% of all special education students graduate high school with a regular diploma. However, only 65% of Black children who receive special education services graduate high school with a regular diploma.
While disability does not occur more frequently in the Black community, Black children are often over identified as having behavior problems or not being school ready thus creating a pipeline of Black students into the special education system that often does not serve them equitably.
The Black Child Fund seeks to elevate the cultural competence of special education advocates, teachers, and practitioners so that all professionals serving BIPOC students with disabilities are doing so through a culturally responsive lens.
Why is this work important to you?
This work is important to me because I fundamentally believe that education is the most powerful lever that we have to disrupt the effects of generational poverty within communities of color. Full Stop. Period.
If I can be even more pointed about it, it is the education of not all young people, but specifically the education of girl children because when we change the trajectory of our own lives, we then change the trajectory of our children’s lives. If you really want to disrupt the effects of generational poverty, educate young girls of color.
What is a milestone of special education that you are most excited about? Why?
The willingness of people and institutions to have a reckoning with the racial injustices of our current system. I believe that the soil is fertile and now is the time to have hard conversations about racial inequalities. People are open to hearing, taking action and wanting to be a part of the change that we want to see in our culture and in our communities.
Where must special education improve?
We must do a better job of educating BIPOC youth with special education needs. Culturally inclusive and culturally responsive pedagogy must become ubiquitous within the special education system.
What do you see next for the education system to ensure education is available and equitable to all children with disabilities?
My hope is that meaningful funding will follow all the goodwill and good intentions. Small ideas that are working well in pockets still need a larger platform. We need resources so that we can scale them to benefit all children.
How has the pandemic shaped the experience for children with disabilities and their education? What has changed for them, and what issues are most pressing as we continue through the pandemic?
There is no doubt that all students suffered academically as a result of COVID. Learning loss for all students is real. Access to services has been the prevailing challenge through the pandemic and this problem persists even though students are back to in-person learning.
The number one problem that we saw as a result of the pandemic was that 3-5 million K-12 students received no formal education at all starting in March of 2020 through the fall of this year when we went back to in-person schooling.
It has been nightmarishly hard for everyone to manage education through COVID, and special education populations have felt this more acutely then just about any other unique group. When general education gets a cold, special education gets pneumonia. And I would suggest that special education in poor and rural communities is where the pandemic has done its biggest damage.
It has been nightmarishly hard for educational growth and attainment. The learning deficits are tremendous. We are seeing catastrophic numbers in educational outcomes in the special education population during the pandemic because students have been fundamentally disconnected from education and services that are provided through the local education authority.
What if I’m a student with an Individualized Education Plan (IEP)? That means I am not getting any of the services that my IEP suggests that I have. So, not only am I not getting formal education, but I am also not getting my speech therapy, I am not getting my behavioral therapy, I am not getting all the educational services that my IEP suggests that I need.
Educators and administrators are working hard to try to figure out how to solve these problems for our children, and there are not a lot of easy solutions and pathways to success, and access to opportunities when you layer on issues of poverty,
We haven’t recovered. I can’t say what special education looks like coming out of COVID, because we’re not out. We’re still figuring it out.
What message do you have for parents? What do you suggest for resources via Easterseals and/or otherwise?
Find your tribe. I would love for Easterseals to be a part of everybody’s tribe. Our services are either free or pretty cost neutral even if you are uninsured or use Medicaid. These services are available to everyone.
Also, consider a special education advocate. You can reach out to Easterseals to find a Special Education Advocate in your community. These are people who know the system very well and who can be your ombudsperson in those conversations that you have with your school administrators about your students’ IEP or 504. Special Education Advocates are a fountain of knowledge and a wealth of resources, and they connect you to other resources in your community. If you do not have a Special Education Advocate, get one!
I also encourage parents to reach out to Easterseals or other organizations to find an affinity group for yourself so that you can learn to become the strongest, most effective advocate for your child possible. In doing so, you will also teach your child to become a strong and effective self-advocate.
Also, always remember that the squeaky wheel gets the grease. Don’t be afraid of being a constant presence at your child’s school, and in your teacher’s email inbox. You are their partner, and no one knows your child better than you. You need to work with your education partners to make sure that your child is getting everything they need at school, and that you are doing everything at home to make sure that there is a consistent focus on education both at home and at school.
Your child should not feel that there is one set of expectations at home and another set of expectations at school. You want to have relationships with your educators and school administrators.
Learn to be an advocate for your child, and this will teach your child to be a self-advocate.
Anything else you would like to add?
I encourage more people to reach out to Easterseals. We are here to help. We want to bring more people into this tent. Right now, there is a big tent and there are not enough of us in it. The best way to make progress is to bring in more people and more resources into the tent. Let’s get to work!
Thursday, November 18, 2021, 11:36 AM
Tonight, Thursday, November 18, 2021, I will be one of four women with disabilities on an hour-long …
Tonight, Thursday, November 18, 2021, I will be one of four women with disabilities on an hour-long free Zoom panel sponsored by the Skokie Public Library:
Self Advocacy and the ADA–Online Event: Personal Perspectives, Challenges, and Success Stories
Thursday, November 18, 2021
7:00 pm – 8:00 pm
What does self-advocacy look like when navigating the world with a disability? Four panelists from different fields share stories of how they’ve advocated for reasonable accommodations.
Panelists will share lessons learned and provide tips on fighting for more fair and just treatment in the workplace and beyond.
The three panelists with me are Deirdre Keane, a teacher/librarian who was born with a hearing loss and got a cochlear implant during her freshman year in college; Michele Lee, an experienced finance professional who uses a wheelchair; and Tina Childress, a late-deafened adult with bilateral cochlear implants. The four of us will each be given 10 minutes to tell a few personal stories of advocating for ourselves, leaving time afterwards for discussion and questions. My plan is to talk fast and describe three experiences, one a success, another a collaboration, and the third a failure:
The hour-long panel is free, it will be hosted on Zoom on Thursday, November 18 at 7pm CST, and you can register for it here. There’s a spot on the registration form to enter a library card number, but a library card number is NOT required to register. You can attend free of charge even if you are not a member of the Skokie Public Library. Questions? Call the library at 847-673-7774.
Monday, November 15, 2021, 11:04 AM
Last year, right around this time, I wrote a post about what COVID taught me about long-distance rel…
Last year, right around this time, I wrote a post about what COVID taught me about long-distance relationships. I’m happy to report that one year later we are still going strong! I’m extremely thankful for that, and with Thanksgiving less than 2 weeks away, I’m thankful for a whole lot of other things, too.
For me, this pandemic has been a real paradox. It has brought a lot of hardship and loss, but it has also expanded my horizons. The biggest positive change? So many things I’d been doing in-person I now do virtually. No more worries about transportation, finding the right street address, getting turned around in crowds. For that, I am very thankful. Now here’s a list of other things I remain thankful for as we continue to experience this global pandemic:
So, while I am in no way saying I’m thankful that we are in a pandemic, for me, it does help to sit back and realize that good things have come out of it, too. Teaching myself new apps, gaining more respect for Uber drivers, making new friends, trying new things. I have a lot to feel thankful for, and I hope that on the days that things seem uncertain and the world seems scary, you can find some silver linings, too.
Friday, October 29, 2021, 1:34 PM
Ben Trockman is the Diversity and Inclusion Outreach Specialist at Old National Bank, a long time le…
Ben Trockman is the Diversity and Inclusion Outreach Specialist at Old National Bank, a long time leader in the Easterseals community, and an ambassador. He shares with us his thoughts on National Disability Employment Awareness Month and why companies must include disability in their diversity and inclusion efforts.
What is your current position at Old National Bank? Did I hear you have another job as well? Describe your position and how your disability has or has not played a role in your career development.
Which job should I describe? My career as a Diversity and Inclusion Outreach Specialist at Old National Bank (ONB), or my job as a Councilman in the City of Evansville!? (He said with a smile)
At ONB, I serve as a Diversity and Inclusion Outreach Specialist, where I work to create a more inclusive atmosphere for people with disabilities both within our company and the communities we serve.
I run point on Achieve Ability, a program that pairs aspiring professionals with disabilities with leaders at ONB for a 10-month mentoring relationship. Our goal with Achieve Ability is to empower people with disabilities through a deep and meaningful relationship with a leader at Old National Bank.
Yep, that’s right, I’m also an elected official! I’ve always been interested in local government. I’m also an incredibly competitive person. So, when the opportunity presented itself to run for a City Council position – I was in. Not only am I able to utilize my passion for advocacy to benefit the people of the First Ward (whom I represent) I was able to harness my competitive nature to beat the other guy in the election!
I certainly wouldn’t be in my career in the Diversity, Equity, and Inclusion space without the experience of my disability. But, I’m certain the obstacles and opportunities I’ve experienced as a person with a disability has served as a positive attribute to help our company become more inclusive.
And, as a person with a disability, I’ve learned that advocacy is crucial to make progress, but also to be able to survive. I’ve advocated for inclusion at the Statehouse in Indiana, and with lawmakers in Washington DC. Therefore, I believe my disability has naturally made me – I think – into a better and stronger advocate for myself and the people I serve in the First Ward as a Councilman.
What is National Disability Employment Awareness Month (NDEAM)? Why is NDEAM important?
National Disability Employment Awareness Month is the time to promote inclusion of people with disabilities in the workforce. It is the best time of the year to share success stories, demystify myths, and inspire companies and their leaders to become more inclusive.
For the employer community, some can brag about how inclusive their workforce is already, and some can utilize this month to learn from the leaders in the industry by reading stories and attending webinars. The best and most inclusive minded employers, they use this month to share their best practices while learning additional ways to double down on the progress they’ve already made.
For the disability community, it’s a time to reflect on how far we’ve come, but also collaborate and push to make even more progress. It’s a time to share your story and use your voice for good.
What are some of the best things about hiring people with disabilities? Why should companies consider this untapped market?
We are problem solvers.
We navigate a world that was not created for us. Whether that’s as a person in a wheelchair trying to access public transportation, or a person with a visual impairment trying to complete online assessments. We have found a way to do and accomplish, each and every day. We are resilient.
As a manager, wouldn’t you want to employ problem solvers? Creative minds? I sure would!
Why is disability inclusion in the workforce crucial?
As 1/5 of the world’s population, and at a time when there are more job openings then there are candidates to fill them, employers should realize that people with disabilities, those who they might have counted out for certain positions previously can and will make a meaningful contribution.
We are fathers, daughters, and nieces. We are travelers, customers, and teammates. We are a large part of society that understands adversity. If you include us, we will help you solve problems, we will help you better connect to potential clients, and we will welcome you in as friends and family.
If you’re not including people with disabilities in your workforce, you’re missing a customer. You’re missing a contributor. You’re missing a relationship that could change the way you operate.
Can you talk about the importance of self-advocacy in life, in the workplace, and while on the job hunt?
Our society is not entirely trained to work with and understand people with disabilities. We do life a little differently. So, we must be our own advocates to teach others about what we need to be successful.
As a personal example, in life I must advocate my needs to my caregivers, whether family, friends or a home healthcare worker. I must kindly instruct them to scratch my nose, to check if a shoe is put on correctly, or how to properly restart my computer after it crashes. It happens! It’s advocacy.
While on the job, I find myself teaching my manager and coworkers about what life is like for a person with a disability. What I can’t do. What I can do. Yes, I sure can do that, boss. We live in a society that generally makes assumptions about people’s capabilities, whether you have a disability or not. Luckily, I work for a very empathetic manager and company, but I know that doesn’t happen everywhere.
Whether it’s personal or professional, you must speak up, and be a strong advocate. Because, if you don’t, you might get a pressure sore on your foot where your toe was curled under but didn’t feel it. If you don’t, then you won’t get the appropriate assistive technology you need to be successful on the job.
The life of a person with a disability is a life of an advocate.
What is your advice to a person with a disability who is seeking employment and is concerned about facing ableism while on the job hunt?
Be you. Be bold. If the employer doesn’t accept you for who you are – you don’t want them anyway.
There has been an equality reckoning in the last decade, specifically in the last three years. Companies are committing time and resources to diversity, equity, and inclusion (DEI) – and it’s transformational. If you’re applying to a company that doesn’t have a DEI focus, then you’re looking at the wrong company!
Now more than ever you have the power to seek a quality company. You have the power to prove your abilities. Be you and everything else will fall into place.
How do you think the pandemic has affected the employment status of people with disabilities? Is there a silver lining here?
There is absolutely a silver lining. Society now fully accepts virtual meetings!
That means that a sarcastic, passionate quadriplegic from Indiana can participate in a business development call with a potential partner in Minnesota – no questions asked. True story!
Prior to the pandemic, there is no way I would be asked to handle business development relationships, as the old school rule was coffee, lunches, and dinners. Lots of travel. Now, one of my colleagues can be in a room 2000 miles away visiting with a lovely not-for-profit, while I’m up on the big screen making jokes. It’s a new way of developing relationships and is tremendously beneficial for people with physical disabilities. The travel nightmare is no longer such a serious detriment to fulfilling my career.
Overall, employers have realized that remote work works. As we know, people with disabilities – specifically those with mobility challenges – have issues with access to reliable transportation and in many cases reliable caregivers. Therefore, it can be a difficult task to travel to work as consistently as an able-bodied human. Sometimes caregivers get sick. Sometimes caregivers don’t show up. Life happens.
My employer, Old National Bank has been incredibly flexible with me throughout the pandemic. I’ve been able to work at home when I needed, and that’s been life changing. ONB’s flexibility has even included times when my home health crew was sick or was a close contact. The flexibility of remote work has made it easier for me – and many others – to continue to participate fully in my duties at ONB.
Heck, even the Evansville City Council adopted a policy for remote meetings!
Can you tell me a bit about your relationship with Easterseals?
I wouldn’t be where I am today without Easterseals!
Not only have I used Easterseals for physical therapy since my injury, which has kept me healthy and motivated, I had a life-changing experience as a National Ambassador for Easterseals in 2012.
As an ambassador, I traveled across the US to advocate on behalf of Easterseals, and people and families of those with disabilities. It was a lesson in public relations that I wouldn’t soon forget. At a time when I was still in college, figuring out what I wanted to do with my life, this experience helped me realize I wanted to be in a position of advocacy, and a role that worked to influence people positively.
I certainly wouldn’t be my role at Old National Bank without Easterseals, and I likely may not have pursued a career in local government without the advocacy experience with Easterseals.
Speaking of jobs, during my ambassadorship, I created a nice bond with the public relations team at Easterseals. They realized a public relations job would be a nice fit before I had my public relations epiphany. After I completed my studies in PR & Advertising at the University of Southern Indiana, Easterseals offered me a summer internship in the PR department. The relationship came full circle!
I also served on the board of Easterseals Southwestern Indiana from 2012-2018.
So, what’s my relationship? I’d say Easterseals is in my DNA.
What do you want the world to know about working with and hiring people with disabilities?
We can be great managers, great employees, and great friends. Just like anyone else!
Most importantly, don’t be afraid to ask questions. Most people with disabilities are willing to answer even the “silly questions.” I would so much rather someone ask a question and learn – whether it’s an easy answer or a complicated one – then have someone walk away just wondering.
Ask questions. Engage. Collaborate. We are just like anyone else trying to be successful in the world!
Wednesday, October 27, 2021, 12:56 PM
As our elected leaders in Washington squabble over the important details that should be included in …
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.