From the CEO: Why I Work at AWSF

In my years with AWS Foundation, first as a board member and then as CEO, I am often asked why I am so involved with our mission. I have never been directly responsible for the care of a family member with an enduring disability. I have cared for patients with disabilities, but 8-hour shifts in a hospital with access to Hoyer lifts and needed equipment is not the same.

I  recall my mother telling stories of her oldest brother spending long months in the hospital with severe Juvenile Rheumatoid Arthritis as a child. Her only sister saw two of her four children die as young adults with a form of muscular dystrophy. My cousin had Legg-Perthes and wore a leg brace that allowed him to stand without damaging the head of his femur….but none of these had a significant direct impact on my day-to-day activities.

My final answer usually includes a reference to growing up in a middle-class household with a clear expectation of giving back. I remember days of hearing the rhythmic sounds of a typewriter in the living room as my mother copied books to a larger font for the visually impaired, one page at a time. I would canvas our neighborhood in Western Pennsylvania to collect enough dimes to fill a card for The March of Dimes campaign with my sisters. I remember the card with a picture of a child in leg braces and the excitement as I filled each slot as the day progressed. At Halloween, the collection was for UNICEF, and the neighbors gave all the same. March of Dimes ad

One of the highlights of the summer vacation was getting the requested packet from the Muscular Dystrophy Association (MDA) for the backyard carnival. For those who did not grow up in the 60s, this was part of the annual Jerry Lewis Day MDA telethon. Before the big Labor Day event, kids were encouraged to organize backyard carnivals for other kids to collect the price of a ticket and the fees from the games. Homemade costumes, lemonade stands, and games with prizes of recycled toys and trinkets would likely yield a bag of coins that would be delivered to a local collection spot.

None of this was seen as work or a mandated consequence for some selfish act. It was always just a part of who I was and who my family was. “To whom much is given, much is required.” (Luke 12:48). My family of six was blessed with health, and we were responsible for giving back to our community. Philanthropy is that desire to promote the welfare of others; to focus on quality of life and the public good.

I believe our three children have grown up with a similar sense of giving. One reads to children in local schools. One serves on a board of a nonprofit, and none can pass a red kettle or a Girl Scout selling cookies without reaching into their pocket. Each in their own way knows they are responsible for giving back.

I have realized that  I work with AWS Foundation because of that sense of responsibility and maybe even a little about the joy and pride of knowing the outcomes of those backyard summer carnivals.

Resilience by Joni Schmalzried

‘You can’t wait until life isn’t hard anymore before you decide to be happy.’ (Nightbirde)

 Wow. I heard that first thing one morning, had a good cry, then tried to get back to my work at hand.

Man with Down syndrome, wearing glasses, side hugging a woman wearing glasses while they smile at the camera.

Joni with her former student, Josh O’Neill.

Shortly after that (on the same day, in fact), I had the wonderful opportunity to spend time with one of my very first students from 1984 (he is no longer 5, and I am no longer 21). Later in the day, I spent time reflecting on both the quote and my student, as well as the hundreds who came after him.

This isn’t intended to be a ‘sappy’ piece for the newsletter and isn’t intended to portray people with disabilities as superheroes. I want to reflect on  resilience – falling off the horse time and time again but still getting back on and withstanding or recovering from difficult situations. I especially like the ELL (English Language Learners) definition of resilient…being able to return to an original shape after being pulled, stretched, bent, or pressed. During my career in the field of disability, I have encountered some of the most resilient people I have ever known.

Having a disability presents obstacles that many of us do not have to face – mentally, emotionally, educationally, socially, and physically. When I think about the students (and families) that I have known over the years, the barriers they sometimes faced seemed insurmountable. Jason who had Muscular Dystrophy and knew that his life span was limited. Sam, who had a brilliant mind, but no verbal language to share it with us. Jamal, who had a spinal cord injury at age 17 and had to learn to use a wheelchair, switches to communicate, and depend on others to support his daily need. The countless number of students who had both the desire and ability to work, with no one to hire them; the ability to live independently, but no safe and affordable housing to live in; the desire to get from point A to point B, but no way to get there. These were all individuals who embodied resilience – being bent and pushed but not losing shape in the long run.

What each of these students and families taught me, and should be a lesson to all of us, is that though having a disability can present adversity, can be painful and difficult at times, and can consume an inordinate amount of time – it is not the sum of a person. It does not pre-determine the entirety nor the outcome of a life.

For most of us, becoming resilient takes a lifetime. I know I am still working on it daily. For those born into barriers and challenges, resilience often becomes the fiber of their being, without having the luxury of ‘waiting until life isn’t hard anymore.’

Elon Musk standing on the Saturday Night Live set in an all black suit, smiling

From the CEO: Embracing Neurodivergence

I remember watching the first Saturday Night Live in college, and over the years, there have not been many episodes that I have missed.

Earlier this month, I watched as Elon Musk disclosed on SNL that he had been diagnosed with “Asperger’s.” Let us set aside the discussion regarding the validity of Asperger’s as a diagnosis. What should we make of this public act of disclosing a diagnosis of autism? Was it newsworthy because we heard it from this high-profile businessperson?

Simon Baron-Cohen, professor of Psychology at Cambridge University, Director of their Autism Research Center, and author of the book: Patterns Seekers: How Autism Drives Human Invention, recently spoke about the increasing incidence of the diagnosis of autism and the link between autism and the capacity for invention.

Cohen has done extensive research trying to better understand autism. Some of his findings include:

• Those who work in STEM have more autistic traits than those who don’t
• Those with an aptitude for recognizing systems are more likely to have autistic traits
• There is a genetic connection with both those with autism and those with systemizing ability
• He states that the gene for autism is driving invention

Thomas Edison was believed to have autism. He had an aggressive approach to learning. Edison had 100 plus patents to his name, and even as a child he, was experimenting. He read books in the order they were on the shelf. He was focused on patterns and was obsessed with Morse code (a system of patterns) and even named his children Dot and Dash. He isolated himself in his home. He was not good when dealing with people, but he had great attention to detail and a single-mindedness that resulted in many inventions.

What happens if we encourage autistic people to use their strengths and to feel valued? While autism may restrict an individual from joining the US military, one country has a specific unit of autistic soldiers. This ability for pattern recognition is used to detect potential terrorist activity in reviewing aerial photos. We need to embrace neurodiversity. We may find that by accepting differences, we empower a person to confidently “speak up” when a pattern that may result in a solution to a problem is identified. How many individuals are, like Musk, hesitant to publicly disclose a greater comfort with systems and patterns than with relationships with people?

Are we doing enough to encourage disclosure? How many people are living each day camouflaging their autistic traits? Camouflaging is the attempt to mask those behaviors that are consistent with, in this case, autism, with the desired outcome to pass as neurotypical. Whether in autism or any other “nonmainstream attribute,” this masking is physically and mentally exhausting to one’s wellbeing.

The rate of diagnosed autism is rising. As a region desiring to nurture and recruit STEM businesses and their employees, we need to anticipate more students with autism. There will likely be families where both parents in STEM fields have children with characteristics of autism. As research grows to understand autism and its genetic links, increased diagnosis follows.

There is a link between autism and the capacity for invention. The ability to recognize what neurotypical people may not see lends to a skill in problem-solving, discovering new approaches to familiar tasks, or showing people a different perspective on the world.

Albert Einstein was non-verbal until four years old. His difficulty with social interaction hampered his success in school. Sir Isaac Newton was often described as reclusive. He would become so obsessed when he worked that he would forget to eat.

Nikola Tesla, described as more brilliant than Edison, had an extreme sensitivity to lights and sounds and an obsession with the number three.

With her intense focus on climate change, Greta Thunberg takes on world leaders to act before it is too late.

Edison, Einstein, Newton, Tesla, Thunberg, and Musk all demonstrated autistic traits, including avoiding social contacts, obsessive tendencies, and varied sensory issues. But those autistic traits including the ability to intensely concentrate, visualize abstract concepts, and recognize patterns, resulted in life-changing inventions and approaches.

What are we squelching when we encourage the child to behave in a neurotypical fashion? What can we yield as a community if autistic traits are recognized, disclosed, and nurtured?

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AWS Foundation Announces $1,298,762 in Grants

Fort Wayne, IN ─ The AWS Foundation recently awarded $1,298,762 in grants to 22 non-profit organizations that benefit individuals with intellectual, developmental and physical disabilities in northeast Indiana. These organizations include:

 

Blue Star Recyclers: $30,000 for Midwest recycling operations creating jobs for individuals with disabilities.

Boys and Girls Club of Fort Wayne: $10,000 for sound reduction paneling and $135,706 for the Inclusion Coordinator position.

Camp Red Cedar:  $100,000 for operating support

Community Transportation Network: $200,000 for specialized transportation support.

Down Syndrome Association of Northeast Indiana: $20,000 for the iCan Bike program.

Early Childhood Alliance: $22,348 for early intervention services.

Easterseals Arc of Northeast Indiana: $50,000 in operating support.

Family Voices Indiana: $55,000 to support restructuring efforts.

Fort Wayne Ballet: $7,500 for one sensory friendly performance.

Greater Fort Wayne, Inc.: $165,200 for the disability employment initiative.

Huntington County Community Schools Corp.: $4,999 for the Chillville sensory room.

Judy A Morril Recreation Center: $8,258 for automatic door installation.

L.I.F.E. Adult Day Academy: $60,000 for operating support.

Little River Wetlands Project: $35,000 for the extension of accessible floating trails at Eagle Marsh.

Lutheran Social Services: $35,000 for LSSI Works.

Otis R Bowen Center: $10,000 for Silas Solutions software.

Super Shot, Inc.:  $12,751 Family exam room and sensory items.

The Lighthouse: $5,000 for training for staff to work with individuals with disabilities.

Turnstone: $200,000 in operating support.

Visually Impaired Preschool: $47,000 for early childhood intervention.

Wellspring Interfaith Social Services: $10,000 for the Older Adult Program.

YMCA of Greater Fort Wayne: $75,000 for adaptive services.

From the CEO: The Hill We Climb

February is Black History Month. On social media we have been posting in recognition of the actions of several inspiring African Americans in this country’s history of disability advocacy. In January, however, a new young voice was heard.

Even if you didn’t watch the presidential inauguration, I suspect you have heard about the breakout young poet, Amanda Gorman, who delivered the traditional inaugural poem. Many lines from the almost six-minute recitation entitled “The Hill We Climb” have been requoted.

The one I have seen most frequently is this:

“For there always is light,
If only we’re brave enough to see it
If only we’re brave enough to be it.”

When rereading her poem, a different line stood out for me. In referencing the desire to “form a union that is perfect,” she attempted to describe how we form that more perfect union that is referenced in the preamble to The Constitution. The line that stood out to me was:

“To compose a country committed to all cultures, colors, characters and conditions of man.”

In this line, she humanized the battle of the oppressed. She empowered those with the desire to make our country better for everyone. She encouraged us to “leave behind a country better than the one we were left with.” The vision and eloquence of this 22-year-old young woman reveal wisdom well beyond her years.

We were all encouraged to “lift our gazes not to what stands between us but what stands before us.”

That is what AWS Foundation strives to accomplish each day. We are tied together as a community. We know there are systemic inequities. Indiana continues to lag the national average in age to diagnosis for the child with a disability, and it is still more for the non-white Hoosier child. How can we help with the inequities in front of us? AWS Foundation desires to drive real change for individuals with enduring intellectual, developmental, and physical disabilities.

During February and the days that follow, I encourage you to look at what stands before you and make one life a little better. No act is too small. Now, more than ever is the time to reach out, albeit figuratively, and be a light to someone.

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AWS Foundation Announces Vantage Grant for Disability Service Providers, Awards $450,000.

Fort Wayne (January 26, 2021) – AWS Foundation launches a new Vantage Grant awarding a total of $450,000 to six select disability service providers in the first round of evaluation. Each received $75,000 to identify and explore significant barriers they face and find a path toward solutions that can transform how they serve the disability community in Northeast Indiana. The organizations funded were: Arc of Noble County, Carey Services, Cardinal Services, Easterseals Arc of Northeast Indiana, Pathfinder Services, and Turnstone. During round two of the Vantage Grant process, these organizations will present potential solutions to the barriers they identified for the opportunity to receive additional funding to implement their plan to meet community needs.

“Even under normal circumstances, direct service providers rarely have time or personnel to explore how they can transform their organization,” says Patti Hays, AWS Foundation CEO. “We created the Vantage Grant as an opportunity to look beyond daily demands and explore barriers that challenge the very nature and way that programs and services traditionally support the disability community.”

AWS Foundation invited eleven disability service providers to identify a barrier their organization, and those that they serve, currently face. In the first phase, organizations submitted a concept proposal to receive $75,000 for discovery and analysis. Six award recipients will work for six months, both internally and with consultants and stakeholders, to take a 360-degree look at their barriers and identify potential solutions.  Each will submit a final proposal to AWS Foundation in July that will result in the opportunity for additional funding to implement their proposed plans.

Five additional pre-selected organizations not previously included in the selection process will be eligible to submit a Vantage Grant proposal in the fall of 2021.

Chief Program Office of AWS Foundation Named to Mutz Philanthropic Leadership Institute

Indiana Philanthropy Indianapolis, Indiana — Joni Schmalzried of AWS Foundation has been selected as a member of the inaugural class of the Mutz Philanthropic Leadership Institute. Launched by Indiana Philanthropy Alliance in 2021, the Mutz Institute provides a leadership training experience to skill-up professionals serving in board and executive roles at foundations, corporations and social impact organizations across Indiana.

Dr. Schmalzried successfully completed a competitive application process to gain one of 24 spots in this year’s class. “I am honored to be a member of the inaugural class of the Mutz Philanthropic Leadership Institute. I look forward to learning from both experts in the field of Philanthropy and my classmates across the state as we vision ways to impact our communities.”

The Mutz Institute is named for former Indiana Lieutenant Governor, past Lilly Endowment Inc. president, IPA founder, corporate CEO and Indiana visionary John M. Mutz.

“The Mutz Institute will serve as a pipeline for the transformational philanthropic leaders Indiana needs now and in coming times,” said Jamie Merisotis, CEO of Lumina Foundation, one of the program supporters.

Go here for a full listing of those accepted into the class of 2021 Mutz Philanthropic Leadership Institute: https://tinyurl.com/yy7qxlhs

About John M. Mutz

Born in Indianapolis, John M. Mutz is a graduate of Northwestern University, where he earned both a bachelor’s degree and master’s degree in advertising and business management. He had a long career in business, including managing a chain of restaurants and serving as president of PSI Energy (now Duke Energy). Elected to the Indiana House of Representatives in 1967 and to the state Senate in 1970, he was instrumental in introducing the set of legislative reforms that came to be known as Unigov, the creation of IUPUI and the White River Park Commission, among others. From 1980-1988, he served as the 45th Lieutenant Governor, serving under Governor Robert D. Orr. Mutz later served as president of Lilly Endowment Inc. and chairman of the Lumina Foundation board of directors.

About Indiana Philanthropy Alliance

IPA is a powerful network of foundations, corporations and other social investors working together to lead change, improve lives and lift communities through effective philanthropy. Members hold $21 billion in assets, make over $850 million per year in grants and are located in all 92 Indiana counties. In 2020, IPA celebrated thirty years as a nonprofit membership association.

The Mutz Institute is a program of the IPA. Classes begin in January and meet once a month until October. For more information, visit www.inphilanthropy.org/Mutz.

 

COVID 19 Vaccine image

From the CEO: Doing Our Part

“Do with less so they have enough.”

Growing up as the daughter of parents of The Greatest Generation, I heard this battle cry at family gatherings packed with aunts and uncles. Stories of World War II, or as my uncles called it, “the war to end all wars,” were common. My uncles served in the Air Force, Army, and Navy and fought in the Pacific and European theaters. My father’s oldest brother lost his life in Italy.

Virtually every aspect of American life of the 1940s was focused on winning the war. Every citizen worked to do his or her part to support the Allied troops. It was each American’s civic responsibility to sacrifice for the front line. Women’s contributions to the war effort were most visible primarily on the home front.

I heard stories of victory gardens, gas rations of four gallons a week, and ration coupons for sugar, butter, meat, and oil. Recycling didn’t start with the first Earth Day in 1970. During World War II, fats and grease were returned to butchers to be rendered and processed for ammunition. Paper and cardboard were needed to pack military shells and for cartons to ship K-rations to troops.

Women really did draw lines up the backs of their legs to give the appearance of stockings with seams because silk was required to make parachutes. “Use it up, wear it out, make it do or do without” was the message to all citizens, and to comply with that message was to exhibit patriotism.

Today the front line is in our community. The troops are nurses, doctors, respiratory therapists, pharmacists, health department employees, all healthcare providers. Our soldiers include first responders such as firefighters, paramedics, police, and EMTs. Teachers, grocery store staff, direct-service professionals, and medical assistants are on the front lines and doing their part in this war.

My mother remembered being a young girl sitting in her house in western Pennsylvania with blackout curtains on windows and lights extinguished. Today’s children will one day describe virtual classrooms on computer screens, no graduation parties or football games, and long lines of cars awaiting food to be loaded into the trunk.

Until now, our weapons in this war were limited. Last year we were armed only with masks, hand sanitizer, and our ability to gauge six feet of distance, tactics that many people refuse to use. But in 2021, we are fortunate to have another weapon in our arsenal. We can now attack the root cause of the enemy that has erased the pre-pandemic life we knew in January of 2020.

The American death toll in World War II was a devastating 407,316. In the war against COVID-19, casualties will soon exceed that count. It took the D-Day invasion and the atomic bombs dropped in Japan to bring an end of the war of my mother’s youth. Our invasion has begun. Healthcare workers and the vulnerable elderly are being “armed.” Soon it will be your turn. The end to this global fight is at hand. You can join the assault by merely rolling up your sleeve.

Everyone is in the battle against COVID-19. Our sacrifice for the front-line troops will be to keep using the weapons at hand until we are called to serve. We all dislike masks, but we can wear them a bit longer. Savings accounts, small businesses, restaurants, theaters, concerts, tourism, and more have been ravaged, but they will return, and you can help the recovery. When it’s your turn for the vaccine, you will have the opportunity to show your patriotism against this war. Roll up your sleeve and “pass the ammunition.”

In Indiana, disability support professionals and the clients they serve are in the 1A round of vaccine eligibility. I am proud to be part of a state that recognizes the difficulty in protecting the health of the person with a disability as well as that of the individual providing the care. Avoiding the spread of COVID in these situations is difficult and too many with disabilities have comorbidities that put them at great risk if they would contract the virus. There are now thousands of vulnerable who will be towards the front of the line getting this needed vaccine.

If you are uncertain when it is your turn, call 211 or go to ourshot.in.gov.

Indiana Institute on Disability and Community to Administrate State-Wide Disability Resource Database FINDER

From Indiana University Bloomington:

BLOOMINGTON, Ind. – For those with disabilities and their families, trying to navigate a complex web of services, programs, and other disability-related community resources can be daunting. In November, IU’s Indiana Institute on Disability and Community (IIDC) partnered with AWS Foundation of Ft. Wayne, IN, to implement Indiana Disability Resource FINDER as part of its library information and referral services.

With guidance from nonprofit organizations, disability-focused state agencies, and Indiana families, FINDER was launched in 2019 through an initiative funded by AWS Foundation. FINDER is a free comprehensive online tool specifically designed to connect people with disabilities, family members, and professionals with disability-related programs and services. It supports local communities anywhere in Indiana.

“Research has shown that locating information about disability services and resources is a major hurdle for community stakeholders and disability professionals. As a state-wide tool, FINDER assists in making information accessible and geographically relevant for all Hoosiers,” said Derek Nord, IIDC director. “Through our extensive work across Indiana that touches on all stages of life, the IIDC is excited to expand FINDER’s reach to make it the go-to resource.”

FINDER provides 24/7 access to community services, is easy to use, and supports first-time users with a step-by-step guide. For more experienced users, it has advanced search features. Regardless of how information is located, search results are immediately available, can be saved for future use and shared.

“As Indiana’s Center of Excellence in Disabilities, IIDC is the perfect partner to administrate the FINDER program and take it to the next level,” said Patti Hays, CEO of AWS Foundation. “Combined with IIDC’s leadership and specialized skills and experience, FINDER provides the latest technology to expand collaboration and develop new partnerships to help empower parents, teachers, caregivers, and others to find answers to disability-related questions and become a more informed advocate.”

Service providers, community advocates, and medical professionals regularly contribute to FINDER, keeping the information current, relevant, and practical. FINDER supports the right for people of all abilities to freely choose how they wish to live their lives to the fullest.

About IU Research

IU’s world-class researchers have driven innovation and creative initiatives that matter for 200 years. From curing testicular cancer to collaborating with NASA to search for life on Mars, IU has earned its reputation as a world-class research institution. Supported by $854 million last year from our partners, IU researchers are building collaborations and uncovering new solutions that improve lives in Indiana and around the globe.

About AWS Foundation

Founded in 2007, AWS Foundation supports a wide range of organizations and service agencies in northeast Indiana, working to develop a community in which people with enduring intellectual, developmental, and physical disabilities are engaged fully and meaningfully in all aspects of community life.

 

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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!