Family Voices Heart to Heart Conference

Join Family Voices Indiana for its 2018 Heart to Heart Conference, Friday, May 11, at the Allen County War Memorial Coliseum in Fort Wayne. Heart to Heart is a day of learning and support for families of children and youth with special health care needs and the professionals who serve them. Conference topics include funding care and services, waivers, transition to adulthood, special education and more, all presented by parents with first-hand experience caring for a child with special needs. Attendees also will have time to network and visit exhibitors at the conference and AWS Foundation’s disABILITIES Expo. Register now, or email conference@fvindiana.org for more information.

9th Annnual disABILITIES Expo

Join us for the 9th annual disABILITIES Expo on Saturday, May 12th, 10am – 3pm. This year boasts the same fun with even more opportunities to learn about programs and services for those with disabilities in Northeast Indiana. You’ll find old favorites and new additions to enhance your experience. With performances, activities, art and exhibitor booths, there’s something there for the whole family.

Anyone can learn to play tennis with Turnstone’s tennis clinics. They will offer adaptive stand up tennis for those with physical disabilities, adaptive tennis for those with intellectual or developmental disabilities and wheelchair tennis. Our popular art exhibit and sale will feature beautiful work from many of our areas best artists with disabilities. You won’t want to miss performances by the many talented groups that come back every year. If you love animals, we always enjoy our favorite therapy dogs from Canine Companions and this year we are welcoming Mark’s Ark for a hands-on experience! Most importantly, we have over 110 exhibitors ready to tell you everything you need to know for a healthy, fully enriched life in our community for those with disabilities.

You can learn more at disabilitiesexpoindiana.org. Don’t miss your chance to have all of your resources in one place and enjoy a day with family, friends and lots of fun. We hope to see you there!

From the CEO: Labels

It was two months after my college graduation.  I was an RN on an orthopedic trauma floor and we received a call from the emergency room. They wanted to transfer us a patient with a broken femur…wanted to.  The problem? Bessie. She was 100 years old and putting up a fight.  My shift was scheduled to end soon, and a combative patient admission was not a welcome thought.  Still, we mobilized staff, got equipment, orders and everything we would need to provide care. We braced ourselves for a challenge.

Onto the floor came Bessie Gesheimmer…I will always remember her name.  As it turned out, her fight against the admission was really a fight to see the kick off of the Pitt v Penn State Game. And when she walked out of the hospital on a new hip, I was full of stories about her childhood in Germany.

That “100 year old Fx R hip” taught me about labeling and judgement.

When I went into her room, I expected to find a combative, agitated and (likely) senile patient with a hip fracture. I assumed she would have little likelihood of being discharged anywhere but a nursing home.  Instead, I found a gentle woman who, like me, loved the Pitt Panthers. We shared many of my lunch breaks. I heard about her immigration, her work in a family bakery, her children…and she kept me up to date on football scores during my shift.  We connected, and it turned out that we had a lot in common.

When we label someone blonde, short, boy or elderly, it can help us distinguish each other.  But with these names also comes personal histories, feelings and expectations.

What about labels like Quadriplegic?  Autistic?  Blind?  Disabled?  While they help define parameters for data collection, funding or interventions, they don’t define the individuals they name.

We measure each other, observing, comparing, ordering, sequencing.  Taller/shorter? Younger/Older?  But…how many of us want to be described by a single word?  For a person who has a disability, that single word (and all that is unspoken) limits and perpetuates the tyranny of low expectations.

I labeled Bessie as a “100 year old fractured hip” and prepared myself for the challenges that accompanied those words. Had I held that mindset, without being open to seeing more, I would have missed knowing one of my favorite patients in my nursing career.

May 12 is our ninth disABILITIES Expo at the Memorial Coliseum.  There is no single word to define what can be witnessed there. Vendors will provide options for enhancing abilities and maximizing attributes.  Entertainers will be defying stereotypes demonstrating amazing skills with music, dance and art.  Athletes will showcase their physical abilities.  It will be a welcoming and inclusive community that is 100% judgement free.

I think Bessie would have loved it. (GO PITT PANTHERS!)

Sensory Kits

 

AWS Foundation, in partnership with the Allen County War Memorial Coliseum, Embassy Theatre, Arts United and the Fort Wayne TinCaps to provide Sensory Friendly Kits at events to individuals of all ages with sensory needs.

 

Fort Wayne (March 28, 2018) – AWS Foundation, in collaboration with the Allen County War Memorial Coliseum, Embassy Theatre, Arts United and the Fort Wayne TinCaps, to provide sensory friendly kits at events available to individuals of all ages with sensory needs. The kits are designed to support individuals and families when attending events where loud noises, bright lights and unfamiliar surroundings can make it difficult to enjoy the experience. Sensory friendly kits are available to check out on request and are recycled for use by others at future events.

 

“Every member of our community should have equal opportunity to enjoy the many wonderful events and venues Fort Wayne has to offer,” says Tom O’Neill, AWS Foundation Board Chair. “For this to happen, individuals with sensory challenges need a variety of adaptive tools to help with loud noises, bright lights and close spaces. The goal of this sensory friendly kit is to provide much needed support to individuals and families so they can have the best possible experience when attending an event.”

 

Patti Hays, CEO of AWS Foundation states, “In celebration of AWS Foundation’s 10th Anniversary, we have developed these sensory friendly kits to advance efforts to be a fully inclusive community. While each partner venue is “ADA Compliant” it’s important to recognize that many disabilities do not affect physical access or mobility. To be inclusive and fully accessible, adaptive tools to support sensory needs are necessary. While we are kicking off the program in March as part of Disabilities Awareness Month, it’s important to understand and support the needs of those living with a disability every day of the year.”

 

Sensory friendly kits will be available beginning April 1st at Allen County War Memorial Coliseum, Embassy Theatre, Arts United and the Fort Wayne TinCaps games along with many other events held at Parkview Field. Inquire at guest services to check out a kit. AWS Foundation sees this ongoing program as another opportunity to address unmet needs of individuals with disabilities in the community and hopes that participation will spread to other venues throughout the area.

 

Mike Nutter, TinCaps Team President stated, “When AWS Foundation approached us with this opportunity we were excited to have this resource available to our fans. We pride ourselves in being able to accommodate as many attendee needs as possible and this will be an important addition to what we’re able to offer at Parkview Field, thanks to the generosity of AWS Foundation.”

 

Sensory friendly kits contain noise reducing headphones, several small fidget items, a communications deck, identification wristband, a weighted comfort item and sanitizing wipes. Each item was chosen to answer needs identified by individuals and families when attending an event in a public venue.

 

“We are thrilled to be involved in this community-wide effort to make the guest experience more inclusive and friendly to those with sensory disabilities,” said Randy L. Brown, CVE, Executive Vice President & General Manager of the Memorial Coliseum. “Welcoming more than one million visitors per year to an extraordinary variety of events, we look forward to serving guests with these new kits.”

 

“The sensory friendly kits provide an invaluable support for families attending events at the Embassy Theatre. We are excited about this project and very thankful to AWS Foundation for creating the kits,” said John Hughey, Embassy Theatre’s Marketing Director.

New Faces

AWS Foundation has two new team members! PJ Thuringer, previously working for the City of Fort Wayne, is our new Real Estate Property Manager. He will help us ensure our homes are well maintained and up to date. Jenny Snyder joins us from East Allen County Schools as our new Program Officer. Taking on the Education & Employment, Transportation and Housing initiatives, Jenny is a valuable addition to our grantmaking process. If you see these two be sure to congratulate them on the new positions!

Our System Navigation Initiative

Researchers from the Centers for Disease Control and Prevention (CDC) show the occurrence of babies born with intellectual, developmental and physical disabilities at 13.87%. Signs show that the number of cases being diagnosed with a disability is increasing compared to a decade earlier. While researchers work to understand how best to reduce risk factors, in most cases after diagnosis it is left up to parents to understand the options available to support their child’s needs. However, locating and understanding community resources and funding eligibility can be difficult under the best of circumstances. That’s why AWS Foundation has made system navigation a top initiative. We want to bridge the information gap bringing families, caregivers and support organizations together, creating more opportunities that could best improve health outcomes and quality of life.

Working with more than 40 families and 70-plus area service providers, we’ve continued to hear how they invest countless hours searching for information, placing calls and trying to network with others in similar situations. A number of non-profits spend a substantial amount of time maintaining information beyond the programs and services they provide. We believe that a comprehensive system designed to bring those individual efforts together under one umbrella is a more effective solution, saving everyone time and resources by bringing synergy to overcome challenges.

There are many great organizations working diligently to assist others to navigate the system. It’s an ever growing and expensive challenge with which many struggle. AWS Foundation’s greatest strength is funding. By championing the system navigation initiative, encouraging collaboration and reducing duplication of efforts, we believe establishing a vibrant online system with support staff presence to guide people to resources and information is within our grasp.

If you would like to learn more about the system navigation project, go to AWSFoundation.org/who-we-are/#priority_initiatives or contact Vicki Lee Johnson at vjohnson@awsfoundation.org.

From the CEO: Early Diagnosis

My husband and I enjoy going to movies and try to see each of the Oscar nominated films at this time of year. 2017 had some great films but the winner of the Best Live Action Short Film award, The Silent Child, was the one I watched the day following the broadcast last month.

I found the movie on Amazon Video and watched its brief 21 minutes. I was sitting alone, so no one heard my feelings escape my heart through my tears.

The character in the movie was diagnosed as hearing impaired in her first year of life, but the family made no efforts with sign language until she approached school age. The story goes on to profile what is described as “one of the loneliest disabilities” and the avoidable struggles that deaf children face.  When Libby is given the gift of communication by a social worker, she moves from a world of isolation to the one that is inhabited by others. She finds play, friends and happiness.

The writer’s father lost his hearing when she was a young girl and she saw the isolation and lack of inclusion of those who live in that silent world. She knew of the challenges of mainstreaming the hearing impaired student if there was no specialized support available.  It is a beautiful short film illustrating the joy of the child when someone reaches out and shares the tools necessary for her to be a more included member of her family as well as her small village.

Any condition, including disabilities, when diagnosed early, has the potential for better future quality of life for the individual than a diagnosis delayed. The age to diagnosis for some intellectual and development disabilities in Indiana is twice the national average!  In the movie, Libby’s family knew of the diagnosis but delayed their actions. That delay contributed greatly to her isolation and intermittent behavioral problems. How do we improve not only the time to diagnosis but the path for interventions as well?

As you will read in this newsletter, we are working with statewide resources to help expedite navigating the path for families who are in search of answers to their questions regarding early diagnosis and access to interventions and support. AWS Foundation has funded additional grant dollars to address these areas over the years to provide family peer support, education and to provide access for information for people of all abilities with our annual Disability Expo. But there is still much to be accomplished.

In the meantime, I would challenge you to consider how you might be able to invade that world of isolation that can be the normal for too many with disabilities. Is it a smile and a greeting? Try introducing yourself and asking their name. Is there an event where an invitation might be extended? It might be to invite them to join you at the next movie you see.  Pass the popcorn.

Disability Awareness Month

As we approach Indiana’s Disability Awareness Month in March, it’s a great time to reflect on the way we treat individuals with disabilities.  If your response to that thought is not “just like everyone else,” you may need to rethink your approach.

Ask yourself these questions. Do you avoid eye contact when passing a person with a disability? Do you act overly cautious when around someone with a disability?  Do you instinctively help someone with a disability without first being asked for your help or asking if your help is needed? If your answer was yes to any these questions, here are some tips.

  1. Don’t make assumptions. People with disabilities are capable of doing most everything the rest of us can do. If you see someone struggling, ask if they want your help, don’t just jump in as if you know they can’t complete the task.
  2. Don’t be afraid. A person with a disability is not sick. They are simply differently abled. Make eye contact, smile and say hello, just as you would anyone else.
  3. Follow the “golden rule.” You know the one: Treat others as you would like to be treated. If you do that, then you can’t go wrong.

Whether it’s a coworker, classmate, neighbor or stranger, we have the opportunity to meet people with disabilities every day. Take the time to get to know them. They can bring a new perspective into the workplace and you may find you have common interests. The best part, you could make a new friend.

Patti Hays

From the CEO: Disability Awareness

In January, many of us watched President Trump’s State of the Union address. We saw many invited guests stand and be recognized during his hour plus speech. What I later learned was that each member of Congress is also allowed to invite a guest. Senator Cory Booker from New Jersey invited a Deferred Action for Childhood Arrivals (DACA) recipient and Representative Jim Bridenstine from Oklahoma invited Bill Nye (The Science Guy!).  Many of the invited guests were opportunities for members of Congress to showcase their concerns regarding sexual assault, immigration, Puerto Rico relief and other timely issues.

Senator John Neely Kennedy from Louisiana brought Calvin Franklin.  The Washington Post highlighted this inspirational story the next day.  Calvin is a member of the custodial staff in the Russell Senate Office Building. They met two years ago, soon after Calvin started his job. Senator Kennedy was one of the first ones who stopped and talked with him in his new job acquired through the local Goodwill’s AbilityOne Program. Calvin wants to be a Firefighter but has a learning disability and is scared to try.

Kennedy acknowledged Calvin’s hard work saying he…”deserves a front row seat to history unfolding”. March is Disability Awareness Month.  Who do you know who works hard and deserves that front row seat?  Perhaps, like Calvin, they are looking for a better job but are afraid to try. I would challenge you to introduce yourself. Learn their story. Ask about their dreams.  Perhaps you, like Senator Kennedy, can make a new friend and help them be a part of history.

Calvin Franklin with Senator Kennedy (photo from Franklin’s Twitter)

New Year’s Resolution: Inclusion

Most of us have had the feeling that we didn’t belong at some time in our lives. Whether you were a gawky adolescent struggling to find your identity, or working in an environment in which your personality does not fit. For people in a minority group, this feeling is ever present. People feel isolated from society, especially individuals with disabilities. It is getting better, but we have a long way to go. AWS Foundation is dedicated to making Northeast Indiana an inclusive community for individuals with disabilities through advocacy and grantmaking.

ADA  requirements are the bare minimum a business or organization must do to accommodate individuals with disabilities. Yet people are still excluded. It takes special building design considerations like placing the elevator next to the stairs, programming that makes adjustments for those with special needs and advertising that includes individuals with disabilities without making them stand out. Science Central’s Special Abilities Days makes extra accommodations for sensory sensitivities such as lower noise levels, increased light in dim areas and extra staff create a safe and inviting environment for an enjoyable experience. The Northeast Indiana Regional Partnership has done a fantastic job including individuals with disabilities in the diversity of their promotional materials.

With the creation of the City-County Disability Advisory Council, the greater Fort Wayne area is moving in the right direction for inclusion. We see a growing number of organizations making efforts each year. Our challenge for you in 2018 and beyond is to think about what you can do to create a more inclusive community. Feel free to run your ideas by us and together we can make a difference in the lives of individuals with disabilities.