The Arc logo

When People With Disabilities Are Forced to Choose Between Love and Needed Benefits: Marriage Penalties

/in , , , /by

This Valentine’s Day, as many as 6 million couples will choose to celebrate their love by becoming engaged. But for many people with IDD, this dream of marriage forces them to choose between love and necessary supports to live independently.

When Jen Met Eddie…

Jen and Eddie at an advocacy event.

Eddie and Jen first met while planning an Oregon self-advocacy event in 2006. They both noticed each other across a table and shared with friends that they thought the other was cute. Eventually, Eddie and Jen started getting lunch together and going out – and decided to become girlfriend and boyfriend.

At lunch one day, Eddie popped the question for the first time to Jen. She asked him to come to Christmas with her and ask for her parents’ permission. At Christmas, Eddie popped the question again. “I got on one knee and asked her hand in marriage. It was quite nice.”

Both Eddie and Jen are long-time professional self-advocates and knew of the Social Security and Supplemental Security Income (SSI) marriage penalties. The marriage penalties are punitive rules that cut benefits and limit savings for married couples who rely on critical Social Security SSI benefits.

While they wanted to get married, Eddie and Jen were terrified of what getting married would mean for their lives.

Jen, who has a spinal condition that requires 24-hour medical assistance, explains, “I would lose my Medicaid and have to pay out of pocket for medical needs, and I don’t earn enough to pay out-of-pocket for medications or other medical equipment.”

Eddie, who lives in an adult foster home, adds, “It would impact me significantly if I lost my benefits. I would have no money to live on…. I would have no place to live, [as the rental costs in my county are very high].”

In the end, Jen and Eddie decided not to pursue a legal marriage—and this has meant giving up dreams, big and small.

Both Eddie and Jen wanted to foster a child and become parents, and they believed that they would be great parents to a little boy or girl. However, without a legal marriage, this dream seemed far away. Now in their late 40s, they are not sure if it could ever happen.

And, while Eddie and Jen are committed to each other, not having a legal marriage means not having the legal backing to make medical decisions for each other if needed. According to Jen, “we’d like to [be able to] make medical decisions for our partner.” But, without the legal standing, Eddie and Jen may not be able to do this.

For the past several years, Eddie and Jen have been advocating to remove this unjust rule that no couple should have to deal with.

 “It’s an unfair [rule] that has been around forever. We should be able to [get married and not worry about our benefits], just like everyone else. People don’t understand that people with disabilities are just like everyone else. We pay taxes, we work, [and] we contribute to society.”

Jen and Eddie’s story is one of many. Married people with disabilities often experience penalties that force the couple to give up necessary benefits to marry. This may mean taking a pay cut, working less, or having to quit a job altogether.

No one should have to decide between being legally married and getting the support they need to live in the community.

Click Here for Inclusion: Staying Connected During COVID-19

/in , , /by

For people with intellectual and developmental disabilities (IDD), a fully integrated life in the community often depends on not only people-powered supports like direct support professionals and job coaches, but on the technology to facilitate skill building, social connection, and much more.

As the COVID-19 pandemic swept across the world and shut down entire communities, people with disabilities saw many of those connections and daily routines come screeching to a halt.

Seeing the desperate need for solutions, Comcast NBCUniversal stepped up to quickly provide support where it was needed most. Comcast generously provided grants with flexibility so chapters of The Arc could make the most impact in their fight to safely prevent isolation and support overburdened families. This allowed our chapters to explore new and innovative ways to engage families in the community, at times reaching more people than in the past.

In Larimer County, Colorado, Sam and his mother found themselves stuck at home together and sharing her work laptop. Sam was able to use the laptop for high school classes and his social life—but because his mom also needed it for work, his usage was limited. On top of that, he was not able to download everything he needed for school. The other devices in the house were either no longer able to connect to the internet, out of storage, or not exclusively his. The lack of access prevented him from participating in Zoom calls with his fellow high school classmates and put him behind not only socially but academically. Sam and his mom felt frustrated and left behind, as so many others have during this pandemic.

Through the support of Comcast NBCUniversal, The Arc of Larimer County was able to help Sam and his mother by providing Sam his own new laptop to use however and whenever he wanted. He was finally able to reconnect with his friends virtually and have a sense of independence with having something of his own, giving him something positive as he toughs out the continued isolation wrought by COVID-19.

And Sam’s not the only one thrilled with his new computer! His mom says, “This will be a great stress relief, an answer to prayers. We have been actively looking and trying to make do with my work computer and the one we have to return. Thank you so much for helping our family in this tough time.”          

On the East Coast in Philadelphia, Eloisa Maglaya found herself facing the same challenges. Prior to COVID-19, she was very active in the community and enjoyed attending a variety of events. But once she was home with few options to safely socialize and stay active, she found herself feeling isolated and frustrated. This all changed with the tablet given to her by The Arc of Philadelphia. With her new tablet, she is able to:

  • Maintain a daily routine
  • Stream virtual Zumba classes (her favorite pre-pandemic activity) and stay active
  • Watch movies in her native Tagalog Philippine language
  • Learn how to navigate app usage directions, stream her favorite videos, and better use the device features with the help of her direct support professional
  • Stay updated on COVID-19 safety procedures 

The positive effects of Eloisa’s tablet have been immeasurable. Her family and The Arc’s staff have reported seeing her more joyous and happier!

Comcast NBCUniversal’s support extends far beyond chapter funding. They are leveraging their media platforms to raise public awareness of the impacts of the pandemic on people with IDD—including through multiple segments on the TODAY Show, expanding internet access to low-income families and school districts through Internet Essentials, and advancing accessibility with technology like the voice-activated remote control, X1 eye control, and a dedicated service center for customers with disabilities.

In our hyper-connected world, technology was already what kept us connected from day to day. But as we limit physical contact to stay safe, digital access has become more vital than ever. For people with IDD—who have had to fight for decades for the chance to be included in their communities—access to the digital world ensures that progress is not lost and they can remain connected and engaged with the people and activities they love most.

These grants and more are made possible by:

Comcast logo featuring rainbow icon above the text

The Arc@Work logo

The Workplace in 2020: How Employers Can Support Jobseekers With Disabilities

/in /by

This is the second of a two-part series that The Arc@Work will publish this month to speak on the new and emerging challenges faced by workers with IDD and how employers, disability services agencies, and individuals with intellectual and developmental disabilities (IDD) can work together on creating solutions that create inclusion and workplace equity.

In the first part of this blog series, we discussed how hard the disability labor force has been hit by the pandemic and the various barriers that now face these individuals as they look for work. At the same time, the fact that many companies have had to either temporarily or permanently cut staff as a result of COVID-19, which means that employers will be hiring as the economy begins its slow climb back up to its pre-pandemic levels. Now is the perfect time for employers to assess where they stand in their disability inclusive culture and recruiting strategies. Below is a list of considerations and strategies that employers can consider to mainstream disability-inclusion in rebuilding their staff.

Make your online job application accessible. One of the first barriers that many job candidates encounter in the process is an inaccessible online job application process. Web accessibility is a growing field and there are now several resources for web developers to use to learn how to develop accessible job descriptions and webpages and test their accessibility after the fact. Accessible job descriptions are screen reader compatible, are in plain language and use the The World Wide Web Consortium’s Web Content Accessibility Guidelines 2.1.

Cut out limiting language from your job description. Are all the stated job functions essential to performing the job?Have you ever put a physical requirement on a job, like being “able to lift 40 lbs repeatedly” or “needs to be able to stand for long periods of time”, but neither were actual requirements for the job? While these functions are sometimes included in boilerplate or standard job description language, these are also very real barriers for some applicants with disabilities. You must take a moment to identify and separate out the essential functions of the job from the non-essential functions of the job prior to beginning your recruiting efforts. You will then better be able to convey which parts of the job are actual versus desired skills and capabilities. Your business may be missing out on top talent by using standardized job description language that doesn’t actually apply to the position in question. Make sure that your job descriptions do not use limiting language or include physical “requirements” that are not appropriate for the job.

In the same vein, it is also important not to list having a valid driver’s license as a job requirement if driving is not an essential part of the job. Some individuals with disabilities are either unable to drive or do not have a valid driver’s license and either take public transportation to work or are driven by a family member or caregiver. It is important not to limit individuals by listing this as a requirement unless driving is an absolutely necessary part of the job.

Your job description should also state that individuals with disabilities are encouraged to apply and reasonable accommodations will be provided. This will not only be reassuring for prospective applicants with disabilities, but using these terms in your job description will also help your job application show up among the top results in a search on popular job boards like Indeed or Idealist.  

Ensure that your interview process is equitable and accessible to people of all abilities and communication styles. Many recruiters and HR professionals subscribe to a standardized approach to recruiting and interviewing job candidates for open positions. For hourly positions, this may take the form of an initial phone screen interview followed by an in-person or virtual interview. The phone interview is where many people who communicate differently, have a processing delay or a cognitive disability, or are deaf or hard of hearing may encounter barriers. Interviewers who take dozens of phone screening calls a day may get the impression that a person who speaks or communicates differently may be doing so out of disinterest in the job. This, in turn, can cost a candidate with a disability a fair shot at employment. One of the small ways to accommodate job candidates with disabilities is by offering alternative formats for interviews. Recruiters can offer a phone screen as a default option but also offer to either connect via a teleconferencing platform or an in-person interview based on an individual’s preferences and strengths.

Be intentional about recruiting individuals with disabilities. It is important for employers to remember that maintaining a diverse workforce creates competitive advantages and positively impacts the bottom line in the long-term. This is especially true for new or reopening businesses: committing to inclusive hiring from the outset and establishing your brand as an inclusive employer in your community will boost your brand among your target consumers. In order to reach and provide a bridge for job seekers with disabilities, recruiters should seek out the support of local disability service agencies to identify and recruit qualified job seekers. Partnering with these agencies can also inform an employer’s approach to making sure that new hires abide by OSSHA COVID-10 safety protocols at work.

Follow local government and OSHA guidelines for safety but allow for flexibility. It’s critically important that all employees feel safe enough to return to work. Employers should continue to follow the work safety guidelines provided by OSHA and the CDC as they reopen to guarantee employee well-being.

It is also important to ensure that employees are able to meet those standards and are not adversely impacted (such as individuals with sensory difficulties, individuals who have social awareness difficulties, and others). Speak to your employees that may have issues meeting these safety requirements and think creatively on alternatives to these protocols that better suit people with disabilities. For example: if an individual has trouble wearing standard issued masks with thick fabric, help them find an alternative mask that better suits their needs. If an employee has trouble with social distancing, place them in a role that requires less customer interface.

Make remote work a standard option—even after COVID stay-at-home restrictions are lifted. One of the few positives that have emerged from the pandemic is popularization of remote work as an alternative to in-person work. Numerous articles have emerged since the pandemic began on how remote work has become a boon for workers with disabilities because of the absence of commuting (primary barrier) and the built-in accommodations in the individual’s home.

There is a case of a tech company that has at least two hundred individuals with autism on staff whose CEO has said that remote work has actually improved productivity and communication among staff. The remote work option, though, is only available to individuals whose job requirements can be met via remote work. Not all individuals have this opportunity.

Staying connected and encouraging the feedback loop. Another key success that has emerged from an increasingly remote workforce has been the emergence of alternative modes of communication that employees and managers can use to stay connected. Watercooler conversations have been replaced with tools like Slack, which have been traditionally used in the tech industry. In-person meetings are now taking place over Zoom, Webex, or Microsoft Teams—the latter of which has built-in accessibility features such as AI generated live captioning. Training is key for everyone to access these platforms.

Improve digital accessibility. While remote work is a great accommodation, it is also important to guarantee access and participation of employees with disabilities in the company’s virtual spaces and meetings. Employers should make sure that virtual meetings are accessible (closed captions, ASL interpreters, recording meetings when possible, providing written materials before meetings and summaries after, etc.) and should invest in making shared documents and spaces accessible as well.

The Arc@Work works with public and private sector companies to either create disability-inclusive hiring programs or build upon existing initiatives. Through our work, we’ve placed more than 1000 individuals with disabilities into jobs at a 97% retention rate. We’ve also supported more than 500 businesses become more disability-inclusive. Wherever your company might be in your disability inclusion journey, we’re here to help. Contact us to set up a free consultation now.

Headshot of smiling woman with red hair in front of flowers and bushes

The Power of Belonging: A Community Comes Together

/in /by

By Rachel Baker

R. Baker

Our community of Midland, Michigan, is a community that works hard to create inclusive opportunities for everyone. This past January, The Arc of Midland received a grant to organize and execute our first MLK Day of Service project. With the help of over 175 volunteers, we packaged and delivered food to over 1,000 people on one of the coldest days of the year.

The 175+ volunteers braved the cold to help direct traffic and deliver food. One man, Tom, came to receive food and ended up volunteering the entire day!

“I had no intentions of staying to help, but once I saw everyone working together to help people like me, I had to stay and be a part of giving back to the community that was giving to me.”

The Arc of Midland is lucky to be widely supported by many businesses, clubs, and organizations in our community that pitched in on this effort. The Great Lakes Loons (a local Minor League Baseball team) played host to the chapter’s Day of Service event. Not only does the team provide a safe, accessible, and welcoming environment for everyone to enjoy, but they also employ many people with disabilities throughout the year.

Another crucial partner was Hidden Harvest. Since 2016, we have partnered together through a variety of programs and projects—including a free pantry stocked weekly and supporting the community together when a fire ravaged an apartment complex where many people with disabilities and seniors lived. During this year’s MLK Day event, they provided food assistance, transportation, volunteers, and logistics for packaging of the food.

The Arc of Midland’s MLK Day work brought thousands of people together in service to build a stronger community. Together, every partnering organization, volunteer, and person receiving assistance honored Martin Luther King Jr. and his vision of belonging. 

MLK blog image

A woman smiles in front of a storefront window, wearing a yellow shirt, turquoise necklace, and a ponytail

Perseverance in Planning: The Value of Building an Inclusive Volunteerism Program

/in , , /by

Building an inclusive volunteering community can be stressful, but it is often incredibly rewarding as well! This year, we asked Erica Delma from Holly Ridge Center to share her journey as a grantee of The Arc’s Martin Luther King, Jr. Day of Service project through a letter to herself. She spoke about finding meaningful work for her clients, the partnerships that blossomed because of volunteering, and the spirit of helping others that has lasted long after the events are over.

Dear 2018 Erica,

I know that the last few months since you applied for the MLK grant have been a roller coaster of emotions. As Development Director of Holly Ridge Center, you are responsible for attracting, growing, and stewarding resources to further the important work the Center does in our community. When the opportunity presented itself to apply for funding to develop inclusive volunteer programs, you thought it was a great match for the Center’s focus on inclusivity and finding people with autism meaningful places in the community. When you realized the focus would be on addressing food insecurity, an issue that you have been passionate about for years, you could not have imagined a better fit. And, one day you got the notice – you got the grant!

I want you know that you are joining a group of people and organizations throughout the country who are equally passionate. And, I want you to know that The Arc staff will be there to help you every day to be successful and navigate challenges.

You will get an opportunity to work with multiple community partners that will blossom into deeper relationships. You will add in even more partnerships with Meals on Wheels, the Kitsap Rescue Mission, and other service organizations.

On MLK Day, you will host a very successful volunteer fair at the Marvin Williams Center. Many people will tell you how eager they are to work with you in the future. The volunteers you support will have more opportunities in the community, and they will be eager and excited to do more and help others.

Thank you for your enthusiasm and energy for connecting the dots to promote inclusivity, volunteerism, the spirit of Dr. Martin Luther King Jr., and addressing food insecurity. There will be work nights and even longer days, but all your hard work will pay off!

Sincerely,
2019 Erica