annualreport2014
Words from our ceo
Look back. Look forward. But live in the moment. “When we least expect it, life sets us a challenge to test our courage and willingness to change; at such a moment, there is no point in pretending that nothing has happened or in saying that we are not ready. The challenge will not wait. Life does not look back.”
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f you were born with a disability or have a child with a disability, then you are familiar with that moment. The devastating and wondrous reality of disability does indeed challenge our courage and willingness to change. Among the bravest people I’ve ever known are people with disabilities and their parents. Looking BACK to the enchanted past (“pre-disability”) is at best useless sentimentality and at worst, emotional paralysis. The forceful truth of disability compels us to live in the moment, to develop daily habits of being that first permit us to survive. In time, these daily and momentary struggles lend us the strength to stretch beyond survival. We carry our lessons proudly, like battle scars, and develop high expectations for ourselves, our children and our society. In essence, we begin to look FORWARD. And with a heightened sense of self and the capacity to dream, we realize what we knew from day one: “If I want this dream to come true, then I must LIVE in this present moment.” These ideas (looking back, looking forward and living in the moment) are nothing new under the sun. Facebook and Pinterest are full of such platitudes. And, without shame, The Council embraces these high-brow notions! We incorporate these ideas into our programs, our grants and into our daily conversations with our families. In fact, we are launching a project called: “Art as Memory: Suffering, Liberation, and Redemption.” We are recruiting people with disabilities and their
– Paulo Coelho
families to share their life’s story, stories that may include a painful past, milestones of liberation or the peaceful maturity of redemption and forgiveness. The bravest people I know indeed have stories to tell. And we will use the medium of Art, to help our friends tell those stories. We are recruiting professional artists from many disciplines: oral history (storytellers), painting, ceramics, fiber arts, digital arts, performance art… you name it. Thanks to the generosity of the Kentucky Foundation for Women, Kentucky Arts Council and Louisville Metro, we anticipate an ambitious and vibrant project. Our hope is that this history project can be sustained for many years. Telling your story is advocacy. It empowers the speaker and it empowers the audience. Knowing our history and embracing the present is likely our best path toward a happy and dignified future. Please join us. No matter how you choose to communicate (“non-verbal” folks strongly encouraged to apply!), we will find a creative outlet and medium to help you tell the story. With warmth & gratitude,
Donovan Fornwalt, CEO
governmental affairs
Supreme Court reviews request for records of two men who died in state’s care
Adult protection registry represents a major triumph Long-awaited legislation becomes a reality after six-year push After six long years, a historical step forward in protecting our vulnerable adults in Kentucky from abuse and neglect has finally been achieved with the passage of a law creating an adult protection registry. On July 15, this important new Kentucky law – designed to protect vulnerable adults from caregivers with a substantiated history of abuse, neglect or exploitation – went into effect. Advocates and advocacy groups throughout Kentucky, including The Council on Developmental Disabilities, the Commonwealth Council on Developmental Disabilities, Protection & Advocacy and others, worked for years to make the Adult Protection Registry a reality. We are grateful to all the families, self-advocates, friends and key lawmakers who joined in
this fight and made their voices heard during the 2014 legislative session. The legislation, sponsored in the House of Representatives by Rep. Ruth Ann Palumbo of Lexington and in the Senate by Sen. Sara Beth Gregory of Monticello. creates an adult protection registry to help families and employers in the adult care profession determine whether a prospective employee in a caregiving role has any substantiated findings of adult abuse, neglect or exploitation. Under the new law, the Cabinet for Health and Family Services will maintain a central registry of such findings substantiated on or after July 15, 2014. The registry can be accessed by caregiving facilities, private family employers and groups that accept volunteers who work with
vulnerable adults. All “vulnerable adult service providers” in the state – including adult day care programs, assisted living facilities, long-term care facilities and hospitals, hospice programs and home health agencies – are required to check whether a prospective employee, independent contractor or volunteer has any substantiated findings of abuse, neglect or exploitation in cases where their duties would involve one-on-one contact with a resident. Gov. Steve Beshear, who signed the registry into law, said, “Vulnerable adults and seniors often can’t speak out when they’re being mistreated, and many don’t even know when they are being taken advantage of financially. This law protects them from prospective caregivers with bad records.”
David Tachau
Policy&ADVOCACy
The Council was founded 62 years ago by pioneering parents seeking services to meet the unique needs of their children with developmental disabilities. Today, this legacy of advocacy continues to inspire our work. Our Governmental Affairs Program monitors public policies, legislation and regulations that impact people with disabilities. We work to amend and propose policies and laws that will best serve the interests and needs of individuals with disabilities and their families.
Louisville attorney David Tachau recently represented The Council on Developmental Disabilities in a hearing before the Kentucky Supreme Court in which The Council is seeking access to state records in the deaths of two men. The Council requested records on the death investigations of two disabled men who died while in the state’s care in 2009. The Council’s history and mission require that we speak on behalf of our most vulnerable citizens, and Mr. Tachau did an outstanding job representing our interests as an advocacy organization. The two men at the center of the case – Richard Tardy, 61, and Gary Farris, 59 – died after changes occurred in their living arrangements. Tardy died within a few months of being moved from his home at the Bingham Center in Louisville to a group home in Somerset. Farris died after being transferred from Oakwood, a state-run care facility in Somerset, to a community home. While The Council sought to review the investigation records under the Open
Records Act, the Kentucky Cabinet for Health and Family Services denied access, citing its obligation under a different state law to disclose only to government agencies with a legitimate interest in the case. Franklin Circuit Court and the Kentucky Court of Appeals upheld the Cabinet’s decision, but we are heartened by the fact that the Kentucky Supreme Court has taken up the case for review. At a hearing in August, the Justices were engaged and asked many questions, which Mr. Tachau fielded with clarity of purpose, revealing excellent legal preparation. Courier-Journal reporter Tom Loftus, who covered the hearing, interviewed CEO Donovan Fornwalt afterward. “The folks we are most concerned about actually do not have families — like these two men — live most of their lives in a state institution,” Fornwalt said in the interview. “To claim that only government entities have a right to review records when a ward of the state dies in state custody, really concerns us. It’s the fox guarding the hen house.” The Court will likely issue a ruling within the next few months. We wish to express our gratitude to Mr. Tachau for providing his services pro bono in this important case.
KY Self-Advocates for Freedom
ricci to lead state board Karen Ricci, staff support specialist for The Council and advisor to the Self-Advocacy Connection of Metro Louisville, was recently elected board president of the state organization, Kentucky Self-Advocates for Freedom. Karen is actively involved in disability advocacy throughout Kentucky. “It has always been my passion to help people with disabilities to achieve their fullest potential,” Karen says. “Having grown up with a disability gives me a unique perspective into the challenges faced by individuals with disabilities.”
Council receives prestigious Imagine Award The Council on Developmental Disabilities was recognized with a 2014 Imagine Award for its work on behalf of people with disabilities during an awards banquet in March. The Imagine Awards, presented by the Rauch Foundation, celebrate those who are committed to making a better community and world for people with disabilities. Three awards are presented annually, recognizing the accomplishments of an individual with a disability; an organization that works on behalf of individuals with disabilities; and a volunteer/community leader. The Council was recognized with the organization award for its work on behalf of people with intellectual and developmental disabilities throughout the region for more than 60 years.
Thank you to the following individuals, who were honored in May by The Council on Developmental Disabilities, for their advocacy efforts.
HOPE-VISION-VOICE AWARD MaryLee Underwood, Public Policy Advisor for the Commonwealth Council on Developmental Disabilities; Sen. Sara Beth Gregory, who sponsored Senate Bill 98, and Shannon McCracken, who runs Commonwealth Case Management, for being vocal proponents who worked tirelessly for the passage of the Adult Protection Registry legislation.
WALTER WARREN SELF-ADVOCACY AWARD Courtney Cooper, for lending her voice and sharing her personal experience to bring attention to the need for an abuse registry. Courtney Cooper and MaryLee Underwood
Greg Rankin, Donovan Fornwalt and Traci Reister Hardy pose together after the awards presentation.
A program of The Council on Developmental Disabilities
Weber Gallery
Vision. Voice.
Hope.
G ALLER Y
Weber Gallery is an inclusive visual arts venue that brings together professional artists and artists with disabilities for joint exhibits. Weber Gallery is a program of The Council and is housed on the first floor of the Council offices at 1151 S. Fourth St. in Old Louisville. It is a social change art gallery that works for every artist. The gallery has been a tremendous success, hosting hundreds of visitors and engaging the participation of more than 60 local agencies since its inception.
Introducing Ehren Reed We’re pleased to welcome artist Ehren Reed to the Council team as director of Weber Gallery. Ehren is managing Weber Gallery, curating exhibits and providing artistic vision. She also has primary responsibility as lead artist/project manager for our Art as Memory project (see next page). Ehren is a graduate of one of the most respected liberal arts colleges in the nation, Kenyon College. She also graduated from the California College of the Arts, where she received a BFA with High Distinction in Painting and Drawing. Ehren comes to us with a wealth and breadth of experience. She spent 14 years as a professional artist and educator in the San Francisco Bay Area and has exhibited her work in a variety of venues nationally. Before that, she served as a development officer for the Bay Area United Way. In addition to grant writing, real world arts training and lots of positive energy, Ehren has lots of experience volunteering for groups that serve artists with disabilities (like Studio Works and Creative Diversity). To reach Ehren, email her at ehrenereed@gmail.com or call the Council office at 502.584.1239.
Danny Lane, Kevin Craw and Dennis Johnson were honored with the Courage Award for their service and commitment to Special Olympics. Danny and Dennis have been coaching for many years, and Kevin competes in a variety of sports and represented Kentucky as a member of the Louisville Flyers flag football team at the 2014 National Games.
Special Olympics exhibit honors spirit of courage In partnership with Special Olympics Kentucky (SOKY), Weber Gallery hosted Champions, an exhibition featuring inspiring photographs from SOKY’s archives, highlighting the courage and determination of Special Olympics athletes. The exhibit was open to the public Aug. 29-Sept. 19. In addition to photographs, the exhibit included a variety of juried works by regional artists of all abilities around the themes of athletics and sportsmanship. This exhibit marked the Council’s first partnership with Special Olympics Kentucky, and we were thrilled to join forces in a celebration of the achievements of individuals with disabilities. A special VIP preview event was held in conjunction with the exhibit, where Special Olympics athlete Kevin Craw and coaches Danny Lane and Dennis Johnson were honored for their service and leadership. Thank you to our Silver Sponsor, Eclipse Bank, and to our in-kind sponsors, Old 502 Winery and Gumby’s Catering, for their support and to Metro United Way and Metro Louisville for supporting Weber Gallery.
‘Art as Memory: Suffering, Redemption, Liberation’
Art & oral history project will bring stories of the disabled out of the shadows In fall 2014, The Council embarked on an exciting project titled Art as Memory: Suffering, Redemption, Liberation – an art and oral history project designed to engage and empower Kentuckians with disabilities. This project is a collaborative effort involving artists, writers, digital media students, social-service agencies and individuals with disabilities, serving to share the life experiences of our For more constituents through visual information or art (collage-making, painting, to participate bookbinding, etc.), digital mein the project, dia, oral histories and other contact creative forms of expression. Ehren Reed at Our constituents have ehrenereed@ compelling life experiences gmail.com or to share. As individuals with call 502.584.1239. disabilities, some have lived through institutionalization, abuse, prejudice or marginalization. In just a few decades, our society has witnessed dramatic shifts in policy and attitudes toward people with disabilities, and these changes will be reflected in the stories shared through this project. Artists, writers and documentarians will partner with project participants, giving
them a chance to express personal histories or experiences through the medium that speaks to the individual’s needs and interests. We’ll also invite family members to help in creating these stories. The project will culminate with an art exhibit at Weber Gallery in 2015 as well as a film and short documentary videos. Ehren Reed, director of Weber Gallery, will serve as project manager. The Council is also partnering with Dr. Brenda Jo Brueggemann, a professor and Director of the Composition Program at the University of Louisville, who has extensive experience in disability studies, video production and organizing art exhibits. Dr. Brueggemann will collaborate with her U of L colleagues and digital-media students to produce the project’s documentary components.
Volunteer of the Year
Photographer Dale Arnett Thank you and congratulations to our friend Dale Arnett, who was recently recognized as The Council’s Volunteer of the Year. Dale has a passion for photography and for documenting life, and he gives of his time and talents regularly as event photographer for The Council. Dale’s photographs of Louisville’s neighborhoods were featured in an exhibit at Weber Gallery in October 2013. As Dale wrote in his artist’s bio: “Engineer… attorney… photographer… autistic. Yes, I am all these labels. And yes, I am more than all these labels.” We’re pleased to note that Dale will serve on The Council’s Board of Directors starting this summer.
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The “Art as Memory” project is made possible with funding support from the Kentucky Arts Council and The Kentucky Foundation for Women.
Expressive arts program getting great response The Therapeutic Expressive Arts (TEA) program, a joint effort of the Council’s Family Outreach program and the Weber Gallery, is off to a rousing start. The program is designed to help individuals with disabilities overcome emotional and mental difficulties by engaging with, and expressing themselves, through the artistic process. Art therapist Alicia Criswell, who holds her master’s in art therapy from the Adler School of Professional Psychology, guides students and encourages them to engage with their feelings through the creative process.
Sarah Schmitt of the KAC with artist Sheldon Campbell From Jan. 17 to Feb. 28, Weber Gallery hosted the identity exhibit – a show curated by the Kentucky Arts Council. The exhibit featured wonderful works in a variety of media by artists with disabilities from across the Commonwealth.
spring carnival
Through our Family Outreach & Support program, we provide families with information, guidance and support as well as training on such topics as Medicaid waivers, guardianship, financial planning and educational advocacy. The Council offers special events and support groups to bring families together for networking and fellowship with others sharing a similar journey. Our Family Outreach events include a spring carnival, fall festival, family movie night, annual picnic and holiday open house.
Launched in spring 2014, our Sibling Outreach & Support (SOS) program is a peer support and educational program for children and teens who have a sibling with a disability. It is a safe place for siblings to share, make new friends and express their feelings with peers who understand. Participants receive support, learn about their siblings’ disabilities and learn coping skills for when they feel stressed or frustrated. Clay artist Candy Wheat shared her time, talent and supplies with our siblings to launch the program in March with an art class and pizza party. In May, teen sibling Mia Long shared her wisdom with younger participants and helped facilitate expression through games. We are looking forward to serving more siblings at our upcoming SOS meetings.
mission moment
Nearly six decades later, mother finds she can still rely on Council for support Younger kids participated in games and exercises to express themselves at a recent Sibling Outreach & Support meeting.
Laura Jean Wood Perez, Director of Family and Hispanic Outreach for The Council, has hit the ground running in her new role. Laura Jean is overseeing La Familia Primero (Family First), a newly launched Family Outreach initiative designed to provide intentional and active outreach to underserved Hispanic children and families in the Louisville Metro area who could benefit from The Council’s services. Laura Jean has met with leaders at La Casita Center and Kourageous Kids and has participated in
several community events. She is working to build relationships and raise awareness of our programs and services among members of all cultures in our community, with an initial focus on building relationships with Hispanic-serving organizations. Laura Jean is bilingual (English-Spanish) and her background includes working with the Hispanic immigrant community in the Northern Virginia/Washington, D.C., area, for 15 years. She is a graduate of The Council’s LEAD Training program and serves as an active LEAD Parent, mentoring other parents of children with developmental disabilities in her community of Radciff, Ky. Since the birth of her grandson,
Vision. Voice.
Outreach director cultivating new relationships Hope.
family outreach
SOS gives siblings a place to share their feelings
La Familia
Primero
Bryce, in 2008, Ms. Perez has been his primary caregiver. She has spent years researching and seeking out information, training, therapies and advocacy resources for Bryce, who has multiple developmental disabilities, and has created a plan of intervention and a system of care that empowers Bryce to overcome daily challenges. We are glad to have Laura Jean aboard and are grateful to Brown-Forman for providing funding to support this initiative.
Council expands training for parents, providers Emily Kirkham, Director of Educational Outcomes, facilitated some new offerings in 2014 to broaden our training support to families, caregivers and professionals. One of these offerings was a free daylong workshop on Behavior Training held on Nov. 4 at The Council office. This workshop was designed for people who engage
with, teach, care for and treat individuals with developmental disabilities. The morning session focused on “Understanding and Addressing Challenging Behaviors,” while the focus of the afternoon was on “Understanding the Functional Behavior Assessment and Behavior Intervention Plan Process for Program Planning.”
Our workshop leader was Jaime Flores, a Board Certified Behavior Analyst who has 14 years of experience working with individuals from age 3 to 85 with challenging behaviors and multiple diagnoses. Jaime is the Executive Director and Director of Behavior Services for ResCare Behavior Services for the state of Indiana and Illinois.
By Mona Wilkerson Director of Family Outreach & Special Events
Each day I take calls from parents needing support services for their son/daughter. Most recently, I received a call from an 82-year-old mother who was inquiring about guardianship for her 62-year-old daughter. When I met with Mrs. Royse, I was most impressed with the compassion she had for her daughter with developmental disabilities. I understand those feelings well, since I also have a daughter that is special needs. Mrs. Royse shared her connection with The Council, which began more than 56 years ago when her daughter attended the Stevens School. Mrs. Royse told me when she needed support services for her daughter, The Council was there and, now at this juncture in her life, she needed us again. I was touched by her testimony and assured Mrs. Royse I would personally assist her with attaining guardianship for her daughter from start to finish. Mrs. Royse was relieved and asked if I would accept a hug from her, which I gladly obliged.
family fun fest
new board members We are pleased to welcome the following new members to The Council’s Board of Trustees.
Dale Arnett
Rebecca Grau
Ashley Haynes
Dr. Henry Hood
Mylantha Williams
THE COUNCIL’S 2014-2015 BOARD OF TRUSTEES Officers:
Richard Bush, Current President Matthew Holder, MD, First Vice President Adonna Wickliffe, Second Vice President Dave Fowler, Treasurer Missy Kinnaird, Secretary
Trustees, Term Expiring 2017 Dale Arnett Rebecca Grau Ashley Haynes Dr. Henry Hood Mylantha Williams
Trustees, Term Expiring 2016 Don Edlin Robert Napolilli
Trustees, Term Expiring 2015 Damian Barthle Liz Kimble Debi McMurray Beth Sproul Kenisha Thompson
special events
special events 2014 annual meeting & Picnic
Sue Hasken, Jenny Ebendorf, Anne Ebendorf and Mona Wilkerson, Director of Family Support and Special Events for The Council, pose after the awards presentation.
Ava Hughes admires the whimsical artistic creations displayed at Art from the Heart.
Mike Bush & the Allstars perform a howling good rendition of Werewolves of London at the annual picnic.
art from the heart 2014
Anne & Jenny Ebendorf named Heroes of the Heart
Above: Dan and Lisa Maltese Left: WAVE-TV personality Dawne Gee, event emcee, with acclaimed photographer Dan Dry
Each year, The Council on Developmental Disabilities hosts an annual fundraiser to celebrate our mission and to express our deep gratitude to our dedicated families, supporters and constituents. The 12th Annual Art from the Heart gala, held for the first time at a beautiful new venue, The Parklands of Floyds Fork, brought together more than 175 people in March for an evening of art, auctions, fabulous food, fun and, most important, a chance to gather in support of the cause of improving the lives of children and adults with developmental disabilities. Anne Ebendorf and her daughter, Jenny Ebendorf, were recognized with the 2014 Heroes of the Heart Award. Anne and her husband, Tom, became involved with The Council after Jenny’s birth in 1972. Jenny was born with Down syndrome, and Anne’s doctor did not offer any encouraging words and recommended institutionalization. Anne and Tom ignored his advice and began seeking out local support.
“I joined the Council and it was a life-changing experience for my family,” Anne wrote of her experience. “With the help and guidance and support of other experienced parents, I quickly dismissed the negative advice of our doctor and took on the leadership role as an advocate for individuals with developmental disabilities. With the encouragement of April DuVal, we created the ‘Parent Outreach’ program designed to offer resources and support to new parents of children with developmental disabilities. ... My involvement with the Council has been a very rewarding experience, and it is my heartfelt belief that every family should have the opportunity to experience the joys of raising a child with developmental disabilities.” Sue Hasken, a manager at Kroger, made the Heroes of the Heart presentation to Jenny, who has worked for the Kroger Co. for many years.
The Smith Family
Mona Wilkerson, center, poses with event volunteers. Daniel Noltemeyer catches up with Council CEO Donovan Fornwalt.
Thank you to our sponsors & donors
Come out swinging at Persimmon Ridge on Columbus Day Join us on Monday, Oct. 13, for The Council’s HopeVision-Voice Golf Scramble, an annual fundraising event that helps fund our services, training programs and Family Outreach programming and events for children and adults with developmental disabilities and their families. This year’s scramble will take place at Persimmon Ridge Golf Course, which is ranked one of the most challenging golf courses in the region. The natural lay of the land allowed golf course architect Arthur Hills to create a masterpiece of golf course design, which won the prestigious Golf Digest 2007 Outstanding Design award. The 18-hole championship layout takes you through woods, over creeks, around lakes and through a 120-foot elevation change.
Golf Scramble
Each year, we are fortunate to benefit from the generosity of sponsors, volunteers and artists in our region in putting together Art from the Heart. One of those friends is artist Albert T. Nelson, a Kentucky native (shown above) who took up sculpture as a pastime after serving in the Navy during the Vietnam era. Thirty-five years and hundreds of creations later, he is among the top artists in the region. For this year’s live auction event, Nelson donated his sculpture Love Finds a Way, crafted from oolitic limestone with inset Blenko glass, a piece dedicated to the strength and grace of the human spirit. We are grateful to all those who give of their time, talents and resources to support our mission.
Karen, Bob and Robbie Napolilli
When: 7 a.m. to 2 p.m. Monday, Oct. 13 (Registration at 7 a.m.; shotgun start at 8 a.m.; lunch and awards will follow) Where: Persimmon Ridge, 72 Persimmon Ridge Lane, Louisville Registration: $125 individual, $500 foursome Contact: Mona Wilkerson at 502.584.1239 or mwilkerson@councilondd.org