How is life different for adults who have siblings with developmental disabilities, many who have assumed – or will assume – primary caregiving responsibilities for their brother or sister with disabilities?
Easterseals Siblings Study sheds light on the experiences of sibling caregivers as well as insight on the services and supports they need:
80% of survey respondents say they have a close relationship with their sibling with a disability and that this relationship enhances their life;
Nearly 50% say their parents currently house and provide caregiving for their sibling with a disability while 14% say their sibling lives with them and another 23% say they are already the primary caregiver;
75% of primary caregivers say caring for their sibling is a full-time job, and 30% say they don’t receive support – emotional, physical or financial help – from other friends and family;
Of respondents expecting to take on the role of primary caregiver in the future, 80% say they are comfortable taking on this role but they are much more likely to say they are emotionally prepared than financially prepared (60% vs. 33%).
Easterseals will use these findings to raise awareness of and advocate for the life-long services and supports families and caregivers need – working to lessen disparities and bridge the gap for people living with developmental disabilities across the country.
Easterseals thanks MassMutual for making the study possible. As an Easterseals national corporate partner, MassMutual is committed to serving children and adults with disabilities through its exclusive Special CareSM program, a solution that gives families living with disabilities access to more information, specialists, and financial strategies that can help improve their quality of life. Learn more about Special Care here.
Why Having a College Plan is So Important For Disabled Students
Tuesday, August 27, 2024, 10:00 AM
By Dom Evans When I was in high school, I didn’t understand that my guidance counselor should …
By Dom Evans
When I was in high school, I didn’t understand that my guidance counselor should be helping me figure out what colleges I wanted to attend. I believe this was largely because of ableism. My guidance counselor would occasionally see me, but never specifically to talk about my future, probably because he didn’t think I had much of a future.
I also got the feeling that he thought because I handled so much of my life on my own, this was just another area I could figure out myself.
Since the time I was four, I knew I wanted to be an actor. As a teenager, I was heavily involved in theater and acting and had quite a lot of experience and training. I should’ve been looking at schools like NYU, USC, or UCLA. I should’ve been training and preparing for auditions.
Instead, I was floundering — I was stagnant in my approach to contacting schools. I got an offer to apply to Fordham, and I did, getting into their theater program. I was offered a chance to audition but my family believed I couldn’t go to school outside of Ohio if I wanted assistance from Ohio’s Bureau of Vocational Rehabilitation (BVR).
Nobody told me about BVR either. I’m not quite sure how I got connected with them, but they were also supposed to help me figure out my collegiate goals, and they told me I shouldn’t even bother applying outside of Ohio. The only problem was, there were better schools for what I wanted to do outside Ohio and I should have found a way to go to them — scholarships or something else.
In the end, I first went to Bowling Green State University, 30 minutes from my house. I then transferred down to Wright State University, which was a few hours from my house, but much more physically accessible. Both schools had pretty good theatre programs, but because of my ADHD, it was near impossible for me to figure out auditioning, and with WSU in particular, I wasn’t even prepared for auditions when I was finally scheduled to do so. I didn’t practice the way I should have, or invest time in working out what I needed to do for my audition. I believe this is because of executive functioning issues that were never addressed.
So, what ended up happening was that it took me SEVEN years of schooling to get my degree, and I went to three different schools. I spent a little time at the University of Michigan-Flint, also in their theatre program. By the time I transferred back to WSU, I was no longer pursuing theater. I was studying film. My goals had changed because my life had changed and that was partly because of my disability.
I had been injured multiple times and no longer had the capacity to be a working actor, so I decided to go behind the screen. Again, I had to figure everything out alone. My guidance counselor didn’t treat me like my peers because, like everyone else, he just did not know what to do with me because of my disability. Unfortunately, there’s nobody there to hold your hand and walk you through the process when you are disabled in most situations, and because of that I feel a lot of us miss out on a lot of opportunities.
I probably wouldn’t have gone to any of the schools I went to except for University of Michigan, if I had an actual choice. When you require homecare, when you can’t travel without assistance, these things all make it difficult to go to school far away. That being said, disabled people can do it. There were many people at WSU who came from different areas because the school was physically accessible to wheelchair users.
What really needs to happen is that when you are in high school, starting around junior year, you need to figure out what you want to do. Do you want to go to college? Do you want to go to a trade school? Sometimes going to college can help you figure out what you want to do, so if you are not sure what you want to do, go for a year and explore different classes.
If you do have a goal, what are the best schools for what you want to do? Do you have the grades to get into that school? If you do, what requirements for your disability are you going to need to accommodate? Can that school handle those accommodations? These are the first questions you need to ask yourself. There are questions I desperately wish I had asked myself or someone else had asked me. I believe I would have wasted less time in school if I had a better plan.
Once you figure those things out, what is your plan? You should obviously visit the school. Don’t attend a school you haven’t visited, especially if you are disabled. Once I got to WSU and I realized how physically accessible it was, I knew that It was going to be a breeze getting around. That was never a problem and I was able to become independent because I was able to live on my own on campus at WSU.
If you need homecare, that is something you need to figure out. Most states will allow you to still get your homecare if you are going to school somewhere else as long as your family/guardian is still living in the state that is providing the homecare. However, you’ll want to figure out home care issues before heading to college because having to figure it out while you’re going to school is a total headache
After you have visited, you should definitely talk to disability services and make sure they know who you are. Make sure they know what you need them to help you with in terms of accommodation. You may have to give them paperwork and something from your doctor so they can offer you services. It’s good to get that done as soon as possible.
If you have a major that you are going to declare, you also should reach out to the department. They need to become familiar with you and your accommodations. I always met with or emailed teachers if I could before class to let them know who I was and hash out anything I needed from them before classes began.
A lot of planning for college when it comes to being disabled is preparation. I didn’t understand I needed preparation and my education suffered as a result. It took me longer to graduate and figure out how I could accommodate myself.
Reach out to your guidance counselor now to help you with all of this rather than waiting until your senior year when they may not have the means or knowledge to help you figure out your past forward through higher education.
Dom Evans is the founder of FilmDis, a media monitoring organization that studies and reports on disability representation in the media. He is a Hollywood consultant, television aficionado, and future showrunner. His knowledge and interest on disability extends through media, entertainment, healthcare, gaming and nerdy topics, marriage equality, sex and sexuality, parenting, education, and more. He was also featured in Season 1 of Everything You Know About Disability is Wrong, an Easterseals podcast.
How Mandatory Travel Makes Higher Education Inaccessible
Monday, August 19, 2024, 1:50 PM
By Mids Meinberg You’ve managed to overcome a wide variety of structural barriers and have successfu…
By Mids Meinberg
You’ve managed to overcome a wide variety of structural barriers and have successfully enrolled at a university. The course work is manageable, if time consuming, and navigating the campus is more difficult and draining than anticipated. Still, you’re doing as well as you can in facing the wide variety of obstacles that appear in front of you every day. You’re not excelling, but you’re surviving. Then one of your courses, an elective that you were very interested in, springs a new requirement on you: a project that counts for a quarter of your grade, that will require you to leave campus.
Meinberg
For most students, leaving campus is a relatively simple task. Even those that can’t drive or don’t have a car have the tools available to seek assistance from their peers. For disabled students, asking for this kind of help is significantly more difficult, even impossible, depending on the accessibility needs of the specific student. A non-ambulatory wheelchair user requires specifically outfitted vehicles that most college students will not have. Someone with persistent social anxiety or autism may find it difficult to ask for assistance from their peers.
Even in those universities located within cities or within broader metropolitan areas, the campuses are rarely directly connected with the public transit networks of those cities. When I attended Rice University, I had multiple times where I was required to go off campus, but I struggled with each of them, adding to the difficulty of my developing depression and lack of a support network.
For an art history course, I was assigned to a group that set out to do a survey of low-income Houston architecture. The other members of the group were older and more established at the university than me, and ultimately, I did not contribute to the group project despite my best intentions. I simply did not have the social tools to navigate the gap in experience as mediated by my growing social anxiety to ask for the assistance from the group members that would allow me to participate as required.
Also, an acting course at Rice required me to attend multiple off-campus live theater shows. While I managed to attend one toward the end of the semester because acting courses inherently open up routes of conversation and establish bonds, attending only one was insufficient for the course’s requirement. Requiring off-campus show attendance was particularly striking because of the high quantity of on-campus productions. Forcing students to go beyond their capability when there were perfectly valid, if less professional, options available within the expected boundaries was unnecessary and alienating.
In contrast, at Stockton (which I attended later in life), I had only a single mandatory activity that had me leave campus. However, this was a group activity that was scheduled with the aid of the course’s professor, thus creating a structured place to discuss group transportation. Everyone was willing to carpool anyone, so my inability to drive did not leave me on the outs from participating. Stockton’s acting courses also required a student to see two productions, but allowed for on-campus shows thus making it so much easier to meet that requirement.
For many disabled students, especially since the outbreak of COVID-19, even attending university on-campus is impossible. The risks associated provide massive barriers to entry, even in those cases where the campus is technically accessible. In response, many have turned to online programs to provide the safety that they require, allowing them to participate in upper education while still remaining in a fully accessible environment.
Yet, fully online programs become rarer and rarer the higher the degree being pursued. According to an interview with Erin Hawley, there are no fully online PhD programs for her degree. She earned a Master’s degree in English via an online program at East Carolina University, but has failed to find opportunities to attain her doctorate. For other areas of study, like creative writing, it can be difficult or even impossible to find even a BFA program that is fully online.
Instead, the more common structure for the pursuit of online degrees is a limited residency program. A limited residency program is mostly online, but has a fraction of the semester (usually two weeks) take place face-to-face on campus. The benefit of a limited residency program is that they allow students to meet with their professors and peers in person, serving as the basis for the ongoing work that the student will do at home for the rest of the semester. Limited residency programs are of the highest value to students who are also working, allowing for them to take a relatively short time away from their jobs while continuing their education.
“I’ve wanted to pursue my doctorate for over 9 years, but haven’t found a single English program that doesn’t require me to board an airplane – something that’s impossible for me because I can’t fly with my modified wheelchair or transfer and sit in a standard airplane seat,” Erin said. “This inaccessibility shows how ableism often works in tandem. Airplanes and long-distance travel are not accessible, which makes academia not accessible for me. We need change that addresses how systematic inequalities compound to make easy tasks for anyone who isn’t disabled impossible for those who are.”
Obviously, this structure makes for immediate accessibility concerns. A short time on campus will be as difficult for a disabled person as a long time, as the physical and social barriers that exist in the space will be immediately apparent. In addition to the difficulties on campus, transportation to the campus is a major obstacle itself for many disabled people. Planes are rarely accessible for even ambulatory wheelchair users, and are very expensive. Long car rides bring their own issues, especially for disabled people who cannot drive. The transportation issue is exacerbated by the short time spent on campus, as it means these difficult trips will happen in closer proximity to each other. This does not even broach the expenses associated with bringing a caretaker along for two weeks away from home.
Telecommunication technology is more advanced now than ever before in part because of advances made to accommodate for the COVID-19 pandemic. These tools make it so that the benefits of limited residency programs can be met technologically rather than spatially. Fully online programs should be more widespread, no matter the degree, as they provide the greatest accessibility possible.
We have the tools available to allow disabled people to engage in higher education at all levels and in all fields. All that is needed is for society to accept the changes that are needed to bring these programs to the forefront.
Mids Meinberg is a writer and game designer working out of New Jersey. They have an AA in Creative Writing from Brookdale Community College.
How Easterseals Oregon’s SCSEP Program Connects Older Adults to Employment
Thursday, August 15, 2024, 2:57 PM
By Grant Stoner Employment is a crucial aspect of the human experience. From a young age, people att…
By Grant Stoner
Employment is a crucial aspect of the human experience. From a young age, people attend schools to train specific skills, work jobs to bolster their knowledge, and spend years hoping to establish savings for retirement. Yet, for many, the need to work and seek employment does not end in your 50s or 60s. In fact, for some, it’s only the beginning.
Easterseals Oregon understands the importance of helping individuals find employment opportunities. Through theSenior Community Service Employment Program (SCSEP), Easterseals, in conjunction with the state of Oregon, assists those 55 and over within 34 of the 36 counties to develop necessary skills that allow them to either return to the workforce or enter it for the first time. Speaking with Easterseals,Kathryn Gerhards, Director of Employment Services at Easterseals Oregon, explores the importance of SCSEP, what services enrolled members can access, and even some personal stories from staff and former members.
Why SCSEP Matters
Despite the existence of state and federal programs like Social Security and Medicare and Medicaid, older Americans may lack the appropriate funds for necessities like housing, food, and clothing. Further, with an increase in the evolution of technology and digital services, many older adults struggle to even enter the workforce at all. Gerhards explains the role of SCSEP, noting that not only does it provide employment, but also teaches them how to thrive in the digital age.
“Through SCSEP, participants are placed in internship programs in their county,” Gerhards said. “These internships are hosted by non-profits and federally funded programs. While placed, participants receive coaching and supervision to gain skills that they can use towards employment. During their placement participants work on things like computer comfortability, soft skills, time management, etc. while in a supportive environment. This allows them current experience to add to their resume and gives them a current reference while job seeking.”
Aside from providing technical skills, SCSEP gives members a vital tool regardless of occupation – confidence. Being able to comfortably and confidently enter a new position is beneficial, especially for seniors that not only understand their desired role, but how to navigate the modern era. SCSEP teaches members to embrace modernity which is vital for any job.
“Almost more importantly, these placements also allow job seekers to be and provide value to their internship program,” Gerhards said. “This increases their confidence and gives them a place to belong. This program is funded by the Department of Labor. This funding allows participants to receive a stipend for every hour that they train. This stipend provides more financial breathing room while they job seek, which gets them back on their feet while they work towards securing unsubsidized employment.”
Crucial Services
Since its establishment, Easterseals Oregon has assisted thousands of mature job seekers through SCSEP. Gerhards explains that every year, approximately 500 individuals are serviced throughout the state of Oregon. And since SCSEP is a national program, members can move to a different state and continue to receive services. For a total of four years, participants can access a bevy of tools through numerous workshops and partnering organizations that ultimately bring them into the workforce.
“SCSEP participants engage in platforms like GetSetUP and IBMSkillsBuild,” Gerhards said. “We also offer financial literacy through Chase Bank. Through our Business Advisory Committee (BAC), participants also get resume reviews, have access to resume templates, and more. We also are co-located with Worksourses (OneStops) around the state that give them access to local programs like STEP that provide additional support.”
Internships and partnered assistance are not the only forms of assistance available to older adults. Gerhards explains that throughout the entire four-year process, Easterseals Oregon continuously works with each member to refine their skills and help them find employment. “While not at their internship placement, participants also receive support from ESO staff through resume coaching, access to training, job leads, support services and more while they travel their SCSEP journey.”
Success Stories
For each individual enrolled within SCSEP, there are countless stories of success, both with seeking employment, as well as finding a sense of purpose and community. Through the four-year program, mature workers are consistently entering the workforce to once again receive livable wages. One example proves that even at the age of 81, you can still find joy in your work.
“The SCSEP program enrolled me at a point in my life where I was close to being unemployable due to my age and years of looking after my mother rather than continuing as an Insurance Agent,” a SCSEP participant said. “This worked out so well that I was hired by ESO-SCSEP in 2017 as a Data Entry Specialist and Program Assistant. This has given me an increase in salary and the satisfaction in knowing that my efforts are constructively helping older people participate in the economy and realize improved lifestyles. Now at 81, I enjoy the things I do to make SCSEP a viable organization and assist so many elders to actively live healthy and worthwhile lives.”
As mentioned before, SCSEP helps to establish confidence after tragic moments in an individual’s life. For many people, reentering the workforce can be a traumatic experience, especially after, in some cases, needing to completely rebuild — like one participant at Easterseals Oregon.
“The participant who after a life-long career in catering, lost everything after a traumatic injury,” a member of Easterseals Oregon said. “Her house, her business, and in her own words, ‘her entire sense of self.’ Within three months, she is housed and training at a food bank, writing grants, creating recipes based on available food donations, and facilitating inter-agency collaborations to improve food security for Benton County.”
For participants and employees within Easterseals Oregon’s SCSEP, providing a second chance is an invaluable resource for so many individuals. Whether it’s personal moments or nationwide traumatic events like the COVID-19 pandemic, everyone deserves help during their time of need. And for one Easterseals employee, providing mature workers with the confidence to rebuild is a powerful experience.
“We are assisting people not only with reaching sustainable employment, but we are also helping them navigate a world that has become dismissive of their lived experiences, technologically complicated, and often feels overwhelming,” they said. “We remind them of their value. We guide them on how to reconnect with their capabilities. We introduce them to the tools they can use to learn new skills, and the impact is exponential when they start believing in themselves.”
Connect with us on social media