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Benefits Of…. Employment

In support of October being Disability Employment Awareness Month, I originally wrote an article about the Myths around employment, disability, and benefits. When I was done, it seemed more like a fact sheet. A colleague encouraged me to write and share one of my many examples instead. Though some might find this information confusing (or even boring), I think it a much-needed conversation.

When I was a teacher, transition coordinator, and state-wide trainer, I often heard from parents and students that they couldn’t work because they would lose their Social Security Income (SSI) or Social Security Disability Insurance (SSDI) benefits. On top of that, they worried about losing health benefits, often provided through Medicaid.

Some would see this is an ‘excuse’ not to work. I saw it as sincere concern about how families might support the many needs an individual with a disability might have, and how benefits allow them to provide them. It is also a tribute to the misinformation that is rampant around individuals with disabilities entering the workforce.

Early on in my career, I learned to utilize those who knew much more than I did and connect them with families and individuals to help with the issues around going to work. In this story, a Benefits Information Network (BIN) counselor is key.

I worked with ‘Jennifer’ and her family for several years. She was a great worker, had many positive job experiences in school, and (in my opinion) was ready to enter the workforce. Jen lived with her mom, who was a single parent with 3 children at home. Jen’s SSI benefits supported the family in meeting Jen’s needs, including the fact that mom could only work part time and take care of her children. After bringing in a BIN counselor and working with Vocational Rehabilitation, Services, what we ALL learned was this (I upgraded the numbers to reflect 2020):

  • If Jen worked 20 hours a week, making $10.00 an hour, she could earn $800.00 per month
  • She currently receives $800.00 a month in SSI benefits. (which is why someone might think – why work, it’s a wash)
  • Since Jen isn’t involved in what Social Security calls “substantial gainful activity” (SGA), which means she makes more than $1260.00 a month, she ‘technically’ can keep her income and still receive ½ of her SSI payments.
  • Jen now has meaningful employment, earns her own income ($800.00 a month), and receives approximately $400.00 a month from her SSI making her total monthly income $1200.00.

This is a very simplistic take on a very complicated system that looks different for everyone. I only scratched a tiny surface. HOWEVER, whether you are looking at SSI benefits or SSDI benefits, an individual’s combined income from work and benefits is always higher than benefits alone (find more information at: https://www.ssa.gov/pubs/EN-64-030.pdf) . It is so important that we educate ourselves, the individuals we serve, their families, and potential employers on how employment may, or may not, impact benefits.

Indiana is an Employment First state; we don’t want a ‘misconception’ to interfere with potential employment. We need to help everyone see that when gainful employment is an option, everyone benefits!

Patti Hays, CEO

From the CEO: Work Inclusion

Recently, I was asked to rate the level of inclusion for our community, on a scale of 1-10. The question prompted a lively discussion with some of our staff. We are part of a city that has been embracing of the concept of accessibility and we acknowledged that this is a work in progress.

 

True accessibility and inclusion for people of all abilities comes when everything is accessible to everyone at all times. Everyone, always, everywhere.

True accessibility comes when no one feels like an “other”.

It is when we all travel the same path; one that is traversable by all.

True inclusion is integral and intentional. It is anticipatory rather than reactionary.

We are rich in resources with disability providers, arts working towards inclusive performances, recreational options with a commitment to adaptive programming and initiatives supportive of enhanced employment opportunities.

There is no checklist for how to make an inclusive community. It cannot be boiled down to a simple “to do” list.

With true inclusion there is no “us” and “them”. In schools there is no “special ed” and “general ed”. Universal design is in every building where accommodations do not need to be made for employees with disabilities. Large employers are scaled up and have work forces of widely varying abilities rather than just individual businesses doing a good deed for a single individual. We are on the path to meeting this vision.

October is National Disability Employment Awareness month (NDEAM). If you are an employer and want to help us on this path towards a more inclusive community, there are many resources available to you this month. Here are a few for consideration.

Our group gave Fort Wayne a “6”…but let me explain. We are doing better than most other cities but that isn’t enough. AWS Foundation and those we work with have high expectations. We all have visions of what is ideal. We also know how far we have come. We tell stories of what life was like for the person with a disability earlier in our careers. Many of us knew of institutionalization, segregation & marginalization much greater than what we see just 30 years after ADA.

Fort Wayne has NEIDAC (northeast Indiana disability advocacy coalition) bringing together dozens of agencies with a voice of advocacy for those with varying abilities. The City of Fort Wayne and Allen County have organized the Disability Council with similar goals.

Providing opportunities for competitive integrated employment for those of all abilities is a critical keystone for the construction of a truly inclusive community. NDEAM reminds each of that and I encourage each of you to consider how you can help…help us self-score as a more welcoming and inclusive community.

Voting with a Disability

Your vote ensures your perspective is considered in the determination of our public officials at the federal, state, and local levels. Individuals with disabilities need to be included in that decision. All Indiana citizens, minus a few considerations, have the right to vote. This involves individuals with disabilities. Better yet, you have the right to access voting by any means needed. So, what are your options?

In-Person Voting

If you are willing and able to show up on November 3rd, go for it! You can also vote early at the locations, dates, and times determined by your county’s election board. The Help America Vote Act of 2002 requires that there be at least one accessible voting machine at each polling location. You are also entitled to assistance either from a friend or relative, or two poll workers (one from each political party). If you bring someone to assist you, make sure they remember to bring their ID too.

Voting by Mail

You may be uncomfortable receiving assistance at the polls or unable to physically make it to your polling location. That’s okay! Individuals with disabilities are eligible for absentee voting by mail. The first step is completing the absentee ballot request form which can be found at https://indianavoters.in.gov/MVPHome/PrintDocuments. You can mail that request to your county’s election board (a list of locations by county will be attached to the form). The request for an absentee ballot is due by 11:59 pm on October 22. Once the request is submitted, you will receive your ballot in the mail. It is better to request your ballot as soon as possible as the mail does take time. Once you receive your ballot, fill it out and mail it back to the election board, or hand deliver it to their office, by Noon on November 3. Remember, the ballot must be in their office by this deadline, please mail it with as early as possible to ensure it makes it there in time . The United States Postal Service suggests two weeks.

Voting by Traveling Board

If you do not wish to mail in your ballot, you are entitled to have a traveling board of a bi-partisan team come to your home with your ballot. A member from each party is present to ensure everything is processed fairly. You can fill out your ballot yourself, or with the assistance of a family member/friend/caregiver, or the traveling board team, then hand the ballot to the team to take with them that day to be counted. If you are unable to sign the ballot yourself another person present can do this for you. The person signing for you must write their name and address on the ballot as well. If you are able to make a mark, it is recommended to do so. You can find the form to request a traveling board vote at https://indianavoters.in.gov/MVPHome/PrintDocuments, which must be submitted to your county’s election board by noon on November 2.

Whichever method you choose, get out there and vote! The deadline to register to vote is October 5 and you can do that online at https://indianavoters.in.gov.

Patti Hays, CEO

From the CEO: A Community that Celebrates People as They Are

My grandmother was born in 1891. When she went to the small Ohio schoolhouse her teacher observed her pick up the pencil with her left hand.  Each day thereafter her left hand was tied behind her back and she was forced to write with her right hand. Those who were left-handed were believed to be unlucky, dishonest, and even stupid. My grandmother was different and that was unacceptable.

How far we have come. Or have we? Now as in 1897, we all have confirmation bias. We search for and favor those like ourselves. Bypassing critical conscious thought, we are attracted to those who are similar. This is a field of expanding study with many corollaries but in that school in 1897, the girl who was left-handed was the one who was different and for that there was an attempt to correct her defect.

Ask anyone who is left-handed and they will tell you that they have had a lifetime of challenges. The world is built for the 90% of us who are right-handed. Scissors, desks, guitars, and even a computer mouse are all created for the right-hand dominant person. In my years of hiring, I am drawn to the lefties. I have found them to be more creative and better problem solvers because they have had to find new ways of doing things all their lives.

Overcoming confirmation bias is a continual process. It is only with repeated consistent and positive exposure to a diverse population that we can override those unconscious actions. It is more than just inviting everyone to the party. It is assuring that everyone feels respected and valued. That is the difference between diversity and inclusion.

The issues we deal with as a society today are not as simple as left or right handedness. Diversity today is different cultures, abilities, religions, sexual orientation, races, genders, and more. For some of us it is about us. For all of us it is around us.

Churchill said “The world, nature, human beings, do not move like machines. The edges are never clear-cut, but always frayed. Nature never draws a line without smudging it.” Are you the one who sees “different” as needing to be changed or ignored? Can you open yourself to greater exposure to that which is different with the goal of celebrating people as they are?

Patti Hays, CEO

From the CEO: Power of Words

One of my oft repeated quotes is from Maya Angelou:

“Do the best you can until you know better. Then when you know better, do better”

July 26th will mark the 30th anniversary of the Americans with Disabilities Act, a transformational law that continues to protect those with disabilities from discrimination. After 30 years, many of us know better and are trying to do better and still many fall short with their words and thoughts.

What is the power of a word? That old “sticks and stones adage” is wrong…words can harm. While the tongue may have no bones, there is little doubt that its actions can strike the sharpest blows.

It is hard to believe the words used as descriptors in previous generations we would categorize today as derisive. Below are the words used to categorize levels of abilities just 100 years ago.

Idiots—Those so defective that the mental development never exceeds that of a normal child of about two years.
Imbeciles—Those whose development is higher than that of an idiot, but whose intelligence does not exceed that of a normal child of about seven years.
Morons—Those whose mental development is above that of an imbecile, but does not exceed that of a normal child of about twelve years.
— Edmund Burke Huey, Backward and Feeble-Minded Children, 1912

Huey was a recognized 20th century psychologist, but use of these words today would guarantee labeling him as a bully.

Some buildings remain in use today of the Fort Wayne Asylum (later School) for Feeble Minded Children. When the original 1889 school on State Street was demolished in 1983 a single small pillar of the entrance was preserved. Today it stands to remind us of its existence and is marked with a plaque referencing a once “place to learn to be productive citizens”.

Typical of the language of 1983, the students of the school were referenced as “mentally retarded children and adults” on that same plaque. In the mid-twentieth century the words “mentally retarded” with categories of mild, moderate and profound, were created to replace those used by Huey above. It wasn’t until October of 2010 that Congress passed Rosa’s Law. Rosa was an 8-year-old Maryland girl with Down Syndrome who was bullied and taunted by the “R” word.

With Rosa’s law came the requirement that person first language and the more respectful “intellectual disabilities” be used by all federal agencies.

Thanks to Rosa and many others, today we know better on the power of words. AWS Foundation asks you to join us to erase those two outdated words on Monday July 27th at 10am. The bronze plaque will be moved from that brick column to become part of the collection of the Fort Wayne History Center. A similar plaque will take its place but will instead reference the previous home for “children and adults with intellectual and developmental disabilities”

“Words are the clothes thoughts wear.” –  Samuel Beckett

Patti Hays, CEO

From the CEO: Christina’s World

Seeing the news of Betsy Wyeth’s recent death prompted me to go back and view one of my favorite of her husband’s paintings, Christina’s World. On their first date, Betsy introduced her future husband, Andrew Wyeth, to a neighbor, Christina Olsen. This introduction would lead to a friendship between this emerging American artist and middle-aged woman that would last a lifetime.

Christina Olsen had a degenerative disorder that stopped her from walking. She refused to use a wheelchair and instead propelled herself forward with the strength of her arms dragging behind her lower body. In the now famous painting, she was shown in a field she often visited, adjacent to her home.

Image of Andrew Wyeth's painting, Christina's World. It features a woman crawling in a field toward a farmhouse on a hill.

Christina’s World by Andrew Wyeth (1948)

I have looked at this picture literally thousands of times and what I see with this recent inspection is an image of loneliness. It may be the current isolation we are all experiencing right now with our responsible sheltering in place, but I am suddenly struck by how very lonely and abandoned she appears in this painting.

I am reminded that the most severe punishment one can receive is that of solitary confinement for it is with that isolation that one can “break”. The lack of communication from others, the loss of the sense of time or even a disorienting confusion about the days of week can push the strongest of individuals over the edge.

After decades of a culture that allowed for physical segregation and emotional isolation from the rest of the community, many individuals with disabilities have experienced opportunities for greater integration. Just as we were seeing greater progress with employment opportunities and enhanced access to social elements of our communities, we must now comply with the directives to shelter in place.

COVID-19 has shown little greater threat to a population than to those in congregate settings; settings such as nursing homes, prisons and group homes. For an individual with a disability, co-morbid conditions add to the lethality of this virus, perhaps as much as five times that of the general population. At this time there are very limited options for many with disabilities to safely leave their residence.

During the May AWS Foundation Board Meeting, the directors recognized the efforts some in northeast Indiana who have worked to minimize that sense of isolation.  You see, while many of us could work from home, hundreds of caregivers continued to report to work each and everyday to care for those who needed them and trusted they would be there.

For many who care for those in group homes or other settings, it was more than a job. Those caregivers willingly isolated themselves when they were not working to help ensure they were not increasing the risk of a shared exposure to the virus. Services were often provided and equipment purchased for which there would likely be no reimbursement. Through a divided grant of $550,000, AWS Foundation recognized the sacrifice and continued advocacy of those eleven nonprofit agencies.

In describing Christina’s World, Andrew Wyeth said, “The challenge to me was to do justice to her extraordinary conquest of a life which most people would consider hopeless,” he wrote. “If in some small way I have been able in paint to make the viewer sense that her world may be limited physically but by no means spiritually, then I have achieved what I set out to do.”

This isolation will not last forever. As I write this, we are seeing a cautious testing of lessening restrictions. There is still a vulnerability for many but I am optimistic that we will find our way back to the path towards a more inclusive community after this detour. I would ask you to consider the image of Christina’s World and challenge yourself to help us get back to that path of inclusion over isolation.