At Home with a Disability

As children we dream of what we want to be when we grow up and of all the places we will go. For many, this dream includes where we will live and what our home will look like. Coming of age and moving out of the family home is seen as a rite of passage to adulthood but for someone with a disability, their dream of independence can bring added challenges. For them, leaving the family home may not be an option.

The stark reality is that of everyone with intellectual and developmental disabilities in the United States, it is estimated that 89% are supported by family members with only 13% receiving support services while residing outside of their family home. While the Indiana Medicaid Home and Community Based Services (HCBS) Waiver program provides individualized supports to assist individuals, it’s estimated that 75% of those living at home do not receive any support services. This means that a family member must provide for all of their loved one’s needs for their lifetime. As parents and other family caregivers grow older, their need for help and support becomes even more urgent.

When it comes to caring for a family member, most people think about the need to care for elderly parents. But a parent taking care of a child who is unable to move out on their own is often more long term and comes with its own unique challenges. Parents in their 70s and 80s continue to struggle to care for their adult child. In many cases, their child is not eligible to enter a Community Integration and Habilitation Waiver Program until the death of their parents as their primary caregiver, until their parents are over 80 years old or until they are unable to care for their child and there is no other family member to care for them.

That’s why AWS Foundation is working to increase access to housing for individuals with intellectual and developmental disabilities and their families that reflects their personal needs, wants and abilities. We understand why it’s important to support grant making to organizations providing home modification programs such as NeighborLink that give individuals and families the ability to age in place, offer assistive equipment or upgrade areas of their home. For aging parents and individuals living with mobility impairments, behaviors or sensory issues, a home with universal design features such as stepless entrances and wider doorways, an open floor plan, specialized lighting, hard flooring and accessible bathroom features are not just convenience items but may be required for daily living.

We believe that every individual should have the opportunity to live in the home of their own choosing that supports their desire to live as independently as possible. Whether an individual’s dream is to navigate their family home without assistance or, if they do have the opportunity to live independently, working to expand shared living opportunities, AWS Foundation wants to help.

AWS Foundation Announces $1,514,122 in Grants

Fort Wayne, IN ─ The AWS Foundation recently awarded $1,514,122 in grants to 19 non-profit organizations that benefit individuals with intellectual, developmental and physical disabilities in Northeast Indiana. These organizations include:

Bowen Center: $15,000 for Autism Center Certification.

Children’s Choir of Huntington County: $10,000 for the Joyful Songsters Inclusive Choir.

Citilink Access: $50,000 for on-demand Access service.

East Allen County Schools: $10,032 for TeachTown social skills curriculum for special needs elementary school classrooms.

Fairfield Elementary School: $10,000 for Pedals for Success classroom sensory equipment.

Fort Wayne Civic Theatre: $14,000 for Project “Lights Up!” productions.

Fort Wayne Youtheatre: $6,000 for Backstage Insight program.

Greater Fort Wayne, Inc.: $7,600 for two 2018 Leadership Fort Wayne scholarships for individuals with disabilities.

HearCare Connections: $25,000 for low-income hearing loss clinic and related services.

Indiana Deaf Camp Foundation: $5,000 for camper scholarships.

Junior Achievement: $30,000 for functional skills curriculum development and volunteer training.

Life Adult Day Academy: $30,000 for fire sprinkler system.

McMillen Health: $25,000 for Varied Abilities Days health and wellness programs.

NeighborLink: $30,000 for home maintenance and repair services for individuals with disabilities.

Passages: $70,000 for the Spotlight Avenue performing arts program and $20,000 for Creative Abundance arts program.

Turnstone: $114,490 for sports, recreation and wellness for youth and adults with intellectual and developmental disabilities; $1,000,000 to help fund the Phase 2 Construction Project shortfall.

Visually Impaired Preschool Services: $17,000 for early intervention services in Northeast Indiana.

Woodside Middle School: $10,000 for a sensory room.

YWCA: $15,000 for inclusive playground equipment.

The 8th Annual disAbilities Expo Was a Success!

We’re glad that so many of you chose to participate in this year’s disABILITIES Expo. This one-stop resource makes it convenient for individuals and families to connect with others, learn answers to so many important questions and understand what’s available to improve quality of life for those living with a disability. AWS Foundation is proud to provide financial support for this valuable resource that helps so many in our community. Whether attending, performing or an exhibitor, we hope the day was productive for you.

On behalf of the Expo Planning Committee and AWS Foundation, thank you to those individuals and organizations that helped people with disabilities explore opportunities, expand possibilities and experience everything!

 General Attendance: 1254

Volunteers: 49

Exhibitor Booths: 114

Performances: 10

Sports Exhibition Games: 2

Patti Hays

From the CEO

“People are more than just the way they look.” (Madeleine L’Engle)

I received a vacation booklet in the mail last month and tossed it away, even though it highlighted a few trips that my husband and I have considered. He asked why I dismissed it so quickly and I said “the pictures were all of old people…I want a more active trip”. Now, I have long passed the point where I could be considered in my youth, but I knew that I was looking to join a group of people who were not all retirees with great grandchildren. I was looking for an image that represented how I saw myself. I wanted to fit in and belong.

Imagine being a person with a disability and seeing every commercial, every store insert, and every vacation brochure filled with only able bodied individuals…no one like you. No one visually impaired, no one in a wheelchair, everyone with four functioning limbs and no one with one of the myriad of diagnoses and syndromes who make up 20% of the country’s population. Advertisements are more diverse than what I saw growing up, but today’s more diverse ads primarily address racial diversity….until recently.

Photo by Steve Vorderman

Look now at the ads and catalogs from local manufacturer Matilda Jane or perhaps Target, Nordstrom or Gap. These and many more companies are redefining diversity. Fashion companies are leading the movement and there is one powerful woman who is helping to shake things up….Katie Driscoll and her non-profit organization Changing the Face of Beauty (CTFOB). She knows that people with disabilities are the biggest untapped minority in the world and thus is encouraging all companies to show people of all abilities in their advertising. http://changingthefaceofbeauty.org/

Photo by Kera Cervoni

AWS Foundation was able to do one small thing to help advance Katie’s vision earlier this year. With our disABILITIES Expo in May, we held a CTFOB head shot photo clinic. One of the obstacles in getting people with varying abilities in advertising and stock photography portfolios is the barrier of getting possible models in front of advertisers. With a wonderful group of volunteer photographers, 37 area young people were able to get professional head shot photos completed at nominal cost to themselves. Through Changing the Face of Beauty, these images will be shared with modeling and advertising agencies to help identify a larger pool of models; models who may not match that traditional image of “perfection”.

A special thank you to all the volunteers who helped make this special event possible. Each of you moves us one step closer with providing a more accurate portrayal of special needs people and promotes inclusion and awareness. Just as I wanted to see a person like myself in that vacation brochure so does the person with a disability seek the image of the person like themselves as a consumer, an athlete, a student, a musician, as a member of their community as portrayed by the media.

 

Thank you to our CTFOB volunteers:

Photographers:

Michelle Snyder, Erica Brown, Steve Vorderman, Kera Cervoni, Jill Kocian and Bonnie Manning

Hair, Makeup and Clothing Experts:

Abby Miller- Matilda Jane Trunk Keeper

Sarah Richendollar- Hair Styling

Alicia Lewis- Noonday Jewelry

AWS Foundation, in partnership with the Fort Wayne Fire Department, to offer Safety Kits Free to Families of Children with Special Needs

Fort Wayne  – AWS Foundation, in collaboration with the Fort Wayne Fire Department, will offer free Safety Kits to families of children with special needs. The kits are designed to safeguard against wandering and other dangerous situations involving children with intellectual or developmental disabilities. Intended to assist family members and caregivers with prevention and when in emergency situations, safety kits are available daily between the hours of 8:00 AM to 8:00 PM at all 19 neighborhood Fort Wayne Fire Stations located across the city.

“Kids with special needs can be prone to wandering, to place themselves in dangerous situations and are much more likely to be bullied than others,” says Tom O’Neill, AWS Foundation Board Chair. “The goal of this safety kit is to provide families with a variety of tools designed to help prevent a potentially harmful situation from occurring and to give them more resources if an emergency occurs.”

Patti Hays, CEO of AWS Foundation states, “The foundation developed the safety kit to proactively protect children with special needs who are among the most vulnerable members of our community. We’ve asked the Fire Department to help us distribute them because the local firehouse is a vital part of every neighborhood and plays a critical role should there be an emergency. We want kids to recognize it as a safe place and firefighters as their friends should they need help.”

Initial production consists of 2,000 kits. AWS Foundation sees this as a starting point as they work to better understand the unmet needs of children with disabilities in the community that could benefit from receiving a kit. The kit is designed to address a number of safety concerns from wandering, bullying and seclusion to safety prevention methods both at home and school.

Several items contained in the kit are produced by companies that employ individuals with disabilities with employment being one of AWS Foundation’s five community initiatives. The kits were assembled by FWCS students with special needs as part of the Scherer Resources vocational skills training program located at Anthis Career Center. The program prepares high school students with special needs as they transition from the school environment to work and community life.

“We’re fortunate to live in a caring and giving community that values and appreciates all residents,” said Mayor Tom Henry. “The City of Fort Wayne and the Fort Wayne Fire Department are honored to be part of this collaborative effort to make a lasting and meaningful difference for individuals with special needs.”

One of the biggest concerns expressed by caregivers who tend to people with cognitive problems is how to keep them safe. In children, wandering is a risk associated with many conditions, such as autism spectrum disorder, Down syndrome and head injuries. A study by the Interactive Autism Network found that 49% of children with autism are prone to wandering from safety. A family may first become aware of wandering behavior when they are faced with the fact that a child has left the home, yard or their side unattended. Many children with a cognitive disability do not grow out of a tendency to wander as they enter adulthood. The Special Needs Safety Kit for Kids provides information and tools for prevention and to help families to develop a safety plan should there be an emergency.

“The Fort Wayne Fire Department’s commitment to this community doesn’t stop at the emergency response.  Prevention is a very important part of our mission to save lives and participating in this initiative will hopefully prevent injuries to some of our most vulnerable citizens,” says Fire Chief Eric Lahey. “The Fort Wayne Fire Department applauds the good work of AWS Foundation.”

Special Needs Safety Kits for Kids will also be available to families of children receiving developmental specialty care at Lutheran Hospital or Parkview Hospital.

Dual Diagnosis in the ID/DD Population

CEO Patti Hays was invited to write an article for the LookUp blog by The Lutheran Foundation.

We look for patterns in our surroundings.  Cave men looked for patterns of behavior in the animals they hunted.  Our understanding of the solar system was from those who looked for patterns in the change of the moon and the night sky.  Successful investors look for the patterns in the economy to predict stock market performance.   From earliest man to present day, problems are solved, solutions theorized and opportunities are found by those who see the patterns.

 

To read the full article, click here.

Fort Wayne Museum of Art

Exhibits featuring artistic images, works and reflections of living with disabilities.

The Fort Wayne Museum of Art is presenting a trio of exhibitions featuring the work of artists who have forthrightly addressed, in varying ways, the effects of physical and mental disability on the creation of art. With major support provided by AWS Foundation, the exhibits on display March 11-June 11, 2017, include two solo exhibits by contemporary photographers working in the United States and an exhibit of artists from the FWMoA permanent collection.

Sharon, the photographic story of a father’s experiences raising his severely disabled daughter, meticulously traces the profound struggles internationally-acclaimed contemporary photographer Leon Borensztein faced while raising Sharon. Shown together for the very first time, this collection of more than 40 black and white photographic prints communicates the strength of Sharon’s spirit and invites us to consider the power of unremitting love.

The second exhibition, Expressions of Existence, will take its cue from art history and from the FWMoA permanent collection showcasing the work and careers of artists throughout history who have explored the ways in which their disabilities have affected their creative work. The work in this exhibit, which spans the years 1797 to 2013, is not a display of disability but an expression of all lives which are at once comparable and contrastable—synchronous but separate. This exhibition includes works by Jackson Pollock, Wesley Neal Rasko, Marie Laurencin, Chuck Close, Ginny Martin Ruffner, Andy Warhol, and Francisco Goya, among others. This exhibition’s didactic materials will be supplemented by Braille text.

Finally, the series will conclude with an exhibit of the work of Timothy Archibald and his son Eli, who has autism. ECHOLILIA is an eleven-image curation from a larger body of work that was published in the identically titled book (Echo Press, San Francisco, CA, 2010. 70 pp., 43 color plates). Taken at their home in El Sobrante, California, these primarily unstaged images intimately narrate a tense but respectful artistic and personal relationship between father and child, when the two are learning to understand the meaning of autism and the importance of awareness.

Each exhibit’s labels will be printed in font that is easy for individuals with dyslexia to read as well as presented in Braille. Planned programs for this series of exhibits include an artist talk and tour on April 8 from 10:30am-12pm with Timothy Archibald and his son, Eli, with a deaf interpreter present. The talk/tour is free with FWMoA admission. On May 4 at 12:15pm Chief Curator Charles Shepard and Curator of Special Collections Tiffany Street will lead a gallery tour of all three exhibitions, with a deaf interpreter present. The tour is free with FWMoA admission.

On April 29, a tour for the vision impaired will take place.

These exhibitions are organized by the Fort Wayne Museum of Art, led by Chief Curator Charles Shepard, and Curator of Special Collections Tiffany Street. Sharon is co-organized by the Fort Wayne Museum of Art and the San Luis Obispo Museum of Art.

For more information visit www.fwmoa.org or call the Fort Wayne Museum of Art at 260-422-6467.

Patti Hays

From the CEO: Disability Awareness

French artist Henri Matisse was purported to have said “It has bothered me all my life that I do not paint like everyone else.” The brilliant mind that brought us impressionist images like The Dance and The Dessert and who, when left bed ridden at the end of his life, switched to paper cuttings, was troubled because he was different. What beauty we would have lost if Matisse had “painted like everyone else.”

March is Disability Awareness Month.  It is the opportunity for us to appreciate our differences and advocate for equity. We all want to be connected, authentic and competent. Too many with disabilities, as it was for Matisse, may feel “less than”.  What can you do to help build a more welcoming and inclusive community for individuals with disabilities?

Acknowledge! I remember as a girl my mother reprimanding me “not to stare” when I saw a person with a disability. The wheelchair was intriguing to me but in following her well-meaning directive, I looked away. A smile and greeting might have opened the conversation, benefitting us both. We can all help with the feeling of connectedness by just communicating.

Remember to speak directly to the person with a disability, not their companion. Don’t assume that the person doesn’t have the ability to see, hear, comprehend or respond to you. If you don’t understand what has been said, a simple “I’m sorry, I didn’t understand” is the best response. Allow time for a response as well. If it is possible that they did not understand your comments, rephrase rather than just repeat.

Ask! If you want to be of help, remember to ask first. To say “may I be of some help?” rather than to step in and do something for the person, is more respectful of their sense of competence. Touch, as with any stranger, is appropriate only when invited. That goes for the wheelchair, a service animal, or any other mobility device that might be used.

Awareness!  Words such as crippled, handicapped or retarded are offensive. Remember, it is person first language…a child with autism (not “an autistic child”) or a woman with a disability (rather than “the disabled woman”). If you make a mistake, apologize. Don’t allow your fear of making a mistake contribute to someone feeling isolated.

Be aware of your environment. Are doorways, elevators, hallways, and aisles clear and is accessible seating available at all times? If you have ever used crutches or pushed a stroller, you have perhaps appreciated easy access.

Is your business or place of employment welcoming to people with disabilities? Is there a provision for an employment application not online? Is the individual encouraged to identify their disability without consequence? Unemployment for the disability population is more than three times that for the able bodied and neurotypical population. Authenticity comes from employment.

Advocate! Above all, be an advocate. It isn’t uncommon to be relatively unaware of the issues of people with disabilities. It may only be that when someone close to you has to manage in a world not designed for them that you gain a little more of an understanding. Or, it might be when a story hits the media as it did earlier this year when four young people in Chicago restrained, taunted and abused a young man with intellectual disabilities.  Not only did law enforcement react but we saw a national uprising.

ACT! Each of us, regardless of our varying abilities, has something to contribute. Each of us “paints” in our own manner and fashion. How do we find our place in the world…and help everyone else find theirs?

Disability Awareness Month 2017

Disability Awareness Month aims to bring attention to the positive impact people with disabilities make in our communities and promotes a message of inclusion and acceptance for everyone.

This March, AWS Foundation, along with individuals, businesses and organizations across the state will be promoting the theme of this year’s campaign which emphasizes that people with disabilities want to be treated just like anyone else.

“Too often, people with disabilities are called inspirational for simply living their daily lives and doing activities like going to work, playing sports, or taking care of their yard,” said Christine Dahlberg, executive director of the Indiana Governor’s Council for People with Disabilities. “These individuals don’t want to be objectified or treated differently, such as when the undefeated high school wrestler lets a competitor with Down Syndrome win. They don’t want to be the subject of someone’s college essay or featured in an inspirational Facebook meme. They are people with complex lives, hopes and dreams, and just want to be treated like everyone else. The Council applauds AWS Foundation for joining in the important effort to spread awareness.”

As in previous years, Disability Awareness Month 2017 will be celebrated with community-based activities carried out by thousands of advocates and people with disabilities throughout the state. Activities include mayoral proclamations, art contests and awareness campaigns in schools, government agencies and businesses.

For more information about Disability Awareness Month 2017 activities and how you can participate, call Andie Mosley at 260.207.5796.  If you would like to order free Disability Awareness materials from the Governor’s Council, visit indianadisabilityawareness.org or contact the Council at council@gcpd.in.gov.

disABILITIES Expo Sponsors & Exhibitors Wanted

Make plans to sponsor, be an exhibitor or attend this year’s disABILITIES Expo in May. Why not do all three?

The 8th annual disABILITIES Expo is a one day event scheduled for Saturday, May 13th at the Fort Wayne Memorial Coliseum. It’s a great opportunity for individuals with disabilities, families, caregivers, service and product providers and advocates to connect, network and learn.

Becoming a corporate sponsor is a great opportunity to publicly show your support for the disability community. Register as an exhibitor to spotlight your products and services that benefit those living with a disability. Your participation is needed to make this event a success.

The disABILITIES Expo provides individuals of every age and stage of life with helpful information on a wide range of topics. In addition to an abundance of helpful products, services and ideas, the day is filled with activities, entertainment, and hands-on experiences designed specifically for individuals and families affected by a disability.

Each year, volunteers, provider agencies, advocates and others from across northeast Indiana work to make the expo possible. We are proud to be the presenting sponsor for eight consecutive years and continue to be overwhelmed by the crowd’s positive feedback and enthusiasm. We hear the excitement of exhibitors and attendees as individuals discover and take advantage of new opportunities that can help improve quality of life and overall health. Individuals and exhibitors come back year after year to benefit from the wealth of information, products and services available all in one place.

We all know how much advertising your business or nonprofit can cost. Leverage this popular event to your advantage. The disABILITIES Expo features a full day with individuals who plan to spend the day enjoying activities and performances, learning about service and program opportunities, and walking away with a bag of information to use throughout the year. Event day attendance is free to the public. The Memorial Coliseum does charge a $5 parking fee. To be a sponsor or register for a booth, click here now or visit www.disabilitiesexpoindiana.org to learn more.