From the Director
Dear Council Members & Friends, I am honored to announce the selection of Donovan Fornwalt as the Council’s next Executive Director.
Donovan has worked for the Council for fourteen years, serving as the Council’s Director of Governmental Affairs, and has been instrumental in expanding the funding of the developmental disability service system within our community and state. He is a graduate of Berea College, a passionate advocate for those with disabilities, and committed tot he Council’s mission and vision. The Executive Committee of the Council worked diligently in the selection process, and the Board of Trustees confirmed it’s decision to hire Donovan as the Council’s sixth executive director at its April 30th board meeting.Donovan will assume his new responsibilities on June 1st. I believe that our membership and constituents will join the board and staff in our enthusiasm about new leadership and our commitment to supporting Donovan.
The year of transition for the for the Council and for me personally has been an interesting and sometime challenging time. Change is always challenging, and I’m so grateful that together we have managed the transition and our united in our optimism for the future of the Council. The Council-its families, its volunteers and leaders, its staff-has been a major part of my adult life and the lives of my children. It has been a gift. I have been blessed by the people we serve, the mission of our work, and the vision to which we all strive. It has been an amazing 43 years, and I wouldn’t trade it for anything! Thank you all.
I am especially pleased to be able to turn over the reins of leadership to my friend and colleague, Donovan Fornwalt. I will watch with pride as he leads the Council through the next couple of decades. With you help and his talent, the Council will continue to grow and make a difference in the lives of children and adults with developmental disabilities in our community.
Introducing Donovan Fornwalt
The search for a new director is over. A good number of fine candidates responded to the search committee and participated in the selection process prescribed by Council policy. In June 2012, Donovan Fornwalt will step into the Director’s seat, and April DuVal will retire after 43 years with Council on Developmental Disabilities.
Director-Elect will Succeed April DuVal on June 1, 2012
Many goodbyes have been said and heartfelt expressions of gratitude and goodwill conveyed to April, with more still to come, and the measure of her impact is literally incal- culable. But now it is time to introduce the upcoming director to those who are familiar with the Council but may be unfamiliar with Donovan Fornwalt.
Donovan Fornwalt has been the Director of governmental Affairs & Disability policy for the Council since 1998, and maintains that position until June 1st. His long history of disability advocacy began in 1994 when he was director for Advocacy and legal rights for the Center for Accessible living in louisville. even in these early days he demonstrated his proclivity for strategic successes by lobbying successfully for the first funding increase for the personal Care Attendant program since its inception in 1984.
Prior to joining the staff at the Council, Donovan served as the principal assistant to then-Senate Majority Floor leader David Karem, where he was responsible for health and disability policy, staffing the rules Committee, and serving as liaison to the Senate Caucus and the Office of the Senate president.
Besides extensive experience on a broad, statewide scale that requires both savvy in the national arena and ability to navigate Kentucky and Medicaid finance systems, Donovan brings a personal perspective to his role as executive director. in addition to serving as an advocate for his own family members with developmental disabilities, he has been a family home provider for a young man with developmental disabilities for nineteen years, who long ago became friends with Donovan and his children.
Highlights of his accomplishments during his tenure at the Council include:
Kentucky Delegate to the president’s Committee on Mental Retardation, Washington, D.C.
- An international Collaborative of advocates, legislators, and policymakers. Participated in the PCMR committee planning and drafting of the framework for House Bill 144 and Fiscal Year 2000-2002 Budget Request.
Successful Lobbying Results; 300% Increase in SCL Funding since 1998.
- House Bill 144 (2000 Regular): $50 million in additional funding for the SCL Medicaid Waiver Program;
- House Bill 449: Strengthened the rights of appeal for parents and residents of ICF/MR facilities:
- House Bill 488: Guarantees freedom of choice for people with disabilities who use Medicaid transportation services;
- House Bill 269 (2003 Session): Helped secure $34.8 million additional funds for SCL Program- despite a $450 million Medicaid deficit and General Fund shortfall.
Co-founder of the Coalition for Quality and Choice.
- Unique short-term collaboration of 53 service providers, advocacy groups, churches, business and civic organizations committed to improving the fiscal effort on behalf of people with developmental disabilities. Coordinated all media events, legislative strategies and negotiations with the Executive Branch. Developed mission, briefings, and membership.
NEW NAME, SAME GREAT PROGRAM
FAMILY OUTREACH & SUPPORT PROGRAM
A powerful tool for purposeful living is the ability to embrace and celebrate change. Change is never easy, and we have to be willing to move out of our comfort zone, think differently and take risk, not allowing fear or limited thinking to keep us from growing and learning new things.
As we move forward and embrace the changes that are taking place here at the Council, we continue to celebrate and be inten- tional about our commitment to family, outreach, and support.
The Parent Outreach program has begun its transition as we look to a new director with the recent retirement of Susan lawrence. part of that transition is a name change from the parent Outreach program, to the Family outreach & Support Program, with Pamela McDaniel as the new Director. the name change will reflect our focus on providing quality outreach and support to the diverse population we serve.
As we embrace this change and celebrate all that it brings, we welcome your continued support in the mission to initiate positive change on behalf of individuals with developmental disabilities. The Family Outreach & Support program will continue to serve families through information, support, and friendship; trainings and workshops on current topics of interest; our quarterly newsletter “The Outreach Connection”
Now offering Expressions Café every Tuesday, parents or families are welcome to drop in our office and receive resources, infor- mation, or support for any need. expression’s Café offers an iep Clinic the 3rd tuesday of the month, allowing participants to bring their child’s IEP and receive individualized help.
Family Outreach continues to collaborate with FinD@Kentucky Youth Advocates. we are proud to announce thirteen new leAD (leader education & Advocacy Development) parents who gradu- ated on April 24th from our leadership Development program. Our initiative is entitled “parents helping parents.” (See the related LEAD parent article on Page 13.)
if you would like more information contact our office at 584-1239 or visit our program.
Art From The Heart 2012
Your very BIG hearts made this year’s even most successful! Frank Giacolone was presented with the “Heroes of the Heart” award for his 59 years of service to the Council and contribution to enrich the lives of this with developmental disabilities. We also gave recognition to our Founders and Leaders: Bob Boyle, Council’s current president and son of Council Founder, Catherine Boyle. The Leaders: Natalie Semaria, anne Ebendorf, Cheryl Etherton, Marilyn Werst, Dona Jarvis, Lois Hart, Glen Kalley, Damian Barthle and Craig Johnson. The evening was not complete without giving recognition to april DuVal for her 42 years of leadership and service to the Council; she is indeed a pillar of inspiration!
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Update: Governmental Affairs & Disabilities
In the depths of one of the most difficult budgets in recent memory and certainly the most contentious (Senator Williams vs. Governor, House vs. Senate, death of Casino gaming bill and redistricting), our interests were not only protected but there were some modest investments in the ID-DD service system.
|Budget: $7.5 Million to support 300 additional SCL placements (Fiscal Year 2012-13)
Opposition from the Nursing Home lobby and from influential DD providers has proven to be a major barrier.
PROFILE: KAREN RICCI
Life is complex and we all must be flexible or be broken.
When a person comes along who, after a little observation, evokes a reaction of astonish- ment in nearly everyone who crosses her path, any editor with a forum feels a compulsion to write about her. the jaded world needs exposure to someone like Karen Ricci.
To get a picture of Karen, think about the life-affirming exuber- ance that children can bring to a room. Most adults, over- whelmed with looming responsibilities, have experienced the unexpected refreshment that follows an encounter with happy children at the end of a hard day. Suddenly you are smiling, living in the exhilaration of the moment, enjoying an infusion of new energy. Few people retain that contagious positive energy once they are out of the family nest, flying solo, meeting the world head-on. getting on with the pressing business of living tends to mask the underlying wonder of each day.
Karen is a rare grownup who has retained that wide-eyed sense of wonder, even after being knocked to the floor over and over by life’s hard fist. She is very frank about her own disability, feeling that openness is vital to acceptance. As a child with a disability struggling in school, Karen was the victim of repeated bullying so brutal that it drove her to a dangerous state of despair. Sometimes even the acceptance of those closest to her seemed faltering.
Knowing her burdens, when Karen was a high school senior, her father wrote her a letter containing the quote, “Life is complex and we all must be flexible or be broken.”
Later, as a married woman, Karen received the greatest gift of her life, a sweet baby girl named lydia, born in 1999. when lydia was diagnosed at eighteen months with autism and epilepsy, Karen became a fierce advocate. when her marriage ended, Karen knew that she and lydia would hold on together. She became involved with the Council’s parent Outreach activities, where she met pamela McDaniel, today’s director of the Council’s Family Outreach program.
In 2005, lydia died. She was six years old.
Somehow, through everything, Karen’s light remains on, still radiating life’s joy. it is obvious that lydia is always with her—Karen talks about her every day. Casual conversations will remind Karen of a lydia story, which Karen will tell with laughter and enthusiasm, in pure celebration of lydia’s life.
Those who hear Karen’s story and watch her volunteer day after day at the Council, willing and able to lend a hand at anything, marvel at her disposition. Karen takes the grunt jobs, the hour- after-hour phone jobs, the tedious and the mundane, the jobs with a learning curve that would cause most of us to balk—everything we hate or can’t get to—with the same smiling cheer. She has rescued event catastrophes, pulling sweating program directors out of jams with last-minute fill-ins. She compliments everyone, expresses her gratitude for learning opportunities, and is the Council’s greatest cheerleader. Her goodwill leaves tracks all over our offices.
Stop in and meet her. You’ll leave feeling good.
extra ORDINARY PEOPLE
I try to make the viewer ‘wake up’ to life as we know it. – Benjamin Cohen
Opening Reception Friday, June 15, 2012, 5:30 – 9:00pm.
Free to the Public ~ Artists in Attendance ~ Exhibition June 15 – July 27, 2012
Supported in part by DAIL (KY Department of Aging & Independent Living)
NEW WEBER GALLERY EXHIBIT: ORDINARY PEOPLE
Anything But Ordinary
Ordinary, everyday people. we see them everywhere. going to work, riding the bus, shooting the breeze, hanging around, swarming like ants. they live, they die, they’re replaced by other ordinary people—no big deal.
This is the cynic’s outlook, whose own self-image is somehow always outside these lowly masses. After all, who admits to being ordinary?
Ben Cohen questions the very concept of ordinary people. He has been studying people for 89 years, and he thinks they are all a very big deal. He revels in the ordinary splendor of everyday people, and sees the sublime. with paper and pastel he tells a story, and, suddenly, we are able to see the “extra” in the ordinary.
Weber Gallery likes people, too, and so we are packing in this work in a fully loaded effort to provide a wide-angle sampling that does justice to the pastels and watercolors that have been described as expressive realism, impressionistic, or even semi- abstract.
People going about their business, picking out vegetables at the market, fretting about their weight, even examining their toenails— these minor moments become significant in Cohen’s art, and the wildly exuberant colors become metaphors for the real vitality of their lives.
Ordinary people will showcase the work that reflects the extraor- dinary vitality of this remarkable man’s life, who will be 89 years old when he comes to louisville from new Jersey for the exhibi- tion’s opening.
Cohen grew up in the lower east Side tenements of new York City in a Yiddish-speaking immigrant household. His rich boyhood included serving as a craps game look-out for Mafia mobsters. He was shocked to learn later that his neighborhood had been considered disadvantaged, saying “we had the best of anything you could imagine.”
His artistic talent was recognized very early, and he was invited to join a grownup life drawing class at such a tender age that
he was embarrassed to look at the model.
As a young man Cohen served in the army in world war ii, landing on Omaha Beach in normandy in 1944, and freeing a nazi concentration camp in the midst of the mission. last year, well over a half century later, he was astounded to be contacted by the French government and presented the legion of Honor Chevalier—the equivalent to our Medal of Honor—for his heroism.
After the war, Cohen settled in with the USO hostess he couldn’t forget, and he and Shirley raised two sons, one of whom, Bruce Cohen, is a familiar staple of Old louisville. Ben’s art has served him and his family well. He worked as a designer of toys, jacquard sweaters, catalogs, commercial products and illustrations. But, now, he has the freedom to work from his own studio and “do it for the fun of it.”
Cohen’s studio, jammed to the rafters with stacks of pastels and watercolors, illustrates his compulsion to create. “i can’t even imagine a life without art,” he says.
Ben Cohen’s credentials include the pennsylvania Academy and the pratt institute of nYC. He is a signature member of the pastel Societies of America, the west Coast, and new Mexico, and the philadelphia water Color Society, among others.
“My mission is to glorify the ordinary, the things we all take for granted. i’m not about intellectualizing or being obscure. My goal in art is to be accessible…,” Cohen says, making him a perfect fit for weber gallery, which makes a point of full inclusion and diversity, highlighting outstanding artists with disabilities.
Weber Gallery is thrilled to include intriguing and complementary perspectives in works by Julie Baldyga and Donna Sherley of Stu- dioworks, and trent Altman, which will fully round out the Ordinary people exhibition.
LEADERSHIP & TRAINING UPDATE SPEAK ACTIVITIES
Joe Macbeth, executive director for the National Alliance of Direct Support Pro- fessionals (NADSP), was in attendance at the Louisville region’s SPEAK DSP Rec- ognition Event and provided a defining presentation to those in attendance. Joe has worked in the field of intellectual and developmental disabilities for almost thirty years—beginning as a Direct Support Professional. The initial concept of the NADSP was created in the late 1990s by a small group of committed profession- als that included John F. Kennedy Jr. when he was involved with the New York State Consortium for the Study of Disabilities.
Macbeth is recognized as a national leader in the advocacy of and advancement of the direct support profession. He sits on the boards of the American Network Community Options & Resources (ANCOR) Foundation; the Alliance for Full Participation (AFP) and the Council on Quality and Leadership (CQL). He is also involved with AIEJI, an international organization that promotes the work of social educators. He lives in Altamont, NY.
The National Alliance is dedicated to advancing the profession of direct support. Over the last fifteen years, the NADSP has promoted the development of a highly competent and ethical direct support workforce that supports individuals in achieving their life goals.
To date, its contributions include: The Code of Ethics; Nationally Recognized (USDOL) Direct Support Professional Competency Areas; A national, portable and voluntary competency-based Credential and Apprenticeship Program for Direct Support; the first national membership and advocacy organization for direct support profes- sionals; and the Moving Mountains Award that recognizes national best practices in direct support development, which SPEAK received in 2007.”
SPEAK is the Kentucky Chapter of NADSP. for more information on NADSP go to www.nadsp.org
A Sampling of Thoughts & Notes from the Many Grateful Supporters of April DuVal
‘April is like her name – sometimes stormy but usually nurturing, to enable tender shoots and blossoms to grow. She inspires, surprises, and never quits – So we are ready for the heat.’ ~ Lisa Steiner
‘April DuVal was the single reason that I am privileged to work with people with disabilities in Louisville. Christmas time 2002. She recruited and recommended me to the Community Living Board. I got the job!! Thank you, April. Love you!!!’
Community Living, Inc.
‘When I think of April the following adjectives come to mind ready, up for, inclined, spirited, plucky, resolute, determined, and gutsy. All characteristics that have served her and those who she has advocated on their behalf well. She will be missed!’ ~ Beth Richardson
EVENT DATE AND TIME:
Saturday – June 23, 2012
Start time – 8am Shotgun
$75 per golfer or
$300 for foursome with cart
DEADLINE FOR ENTRY:
June 15, 2012
Contact: Mona Wilkerson (502) 584-1239
Mulligan’s & Red Tees
Long Run Golf Course
1605 Flat Rock Road
Louisville, KY 40245
Ph. (502) 245-9015
Editor’s note:LEAD (Leader Education & Advocacy Development) is a Family Outreach program with the Council that promotes empowerment of parent/guardian advocates. (See related article) Amy Smith exemplifies an outstanding LEAD parent. she wrote this article for Autism Awareness Month for the “State Journal,” and speaks s the mother of Brandon, her five-year-old son-and for many other such parents. Amy works for the Kentucky Department of Revenue
Autism affects nearly one million Americans, who live with it daily. there is an old saying among the autism community:
“if you have met one person with autism, then you have met one person with autism.”
The reason families understand this quote so well is that every child is different in how their autistic characteristics manifest. there are varied degrees of severity, symptoms and at what age the child is diagnosed. Many families can see there is a difference in their child, but families must rely on the help of professionals to achieve a formal diagnosis.
Some children with ASD are non-verbal or rely on assistive tech- nology devices to speak for them, while some children on the spec- trum speak far beyond their years at an early age. Despite where a child is on the spectrum, they are capable of learning concepts and living a functional and successful life.
Many children that are diagnosed on the spectrum also suffer from sensory overload. it is typical for a child to go into a grocery store and take in the bright fluorescent lights, the rainbow of colors that fill the produce section, the smells of baked goods and fresh flowers lingering in the air, the conversations going on around them and the clang of carts in one solitary moment.
Can you imagine having to take all of that in and then feel unaware of how you fit into the scenario?
Many times, that has been my child and i have been that parent. i have seen my son become very upset at the thought of the grocery store. the lights hurt his eyes, the sounds hurt his ears and the smells make him uncomfortable. Still, in the midst of a meltdown, i have to be the one to help my child cope, protect him from the criticisms of other shoppers and still get the groceries we need.
To someone who doesn’t know my son has autism, it might look like the tantrum of a spoiled child. that assumption is not reality. i might have had that assumption, too, before autism became a reality for me.
When my son was diagnosed, i sought an intensive, early inter- vention program. it was difficult at first to discover what worked for my son, but once we achieved a successful program, he began making significant gains.
Today, a trip to the grocery store is a basic trip without melt- downs. it took years to overcome the obstacles he faced when he walked into any store. now, he understands some of his sensory needs and has ways of coping with the anxiety that his sensory overload causes. He is an intelligent, funny, charming and loving child who wants to have friends, and someday he wants to be a doctor.
I am his mother and like any parent, i want the best for him. it is part of my job to ensure he has the tools to be successful. i am proud of the progress he continues to make.
As a parent of a child with autism, i want people to understand that children with autism are intelligent and have something to contribute to the world. parents do not want pity, but we are not opposed to compassion. we want our children to be loved and accepted into a community, like any parent.
If you see a light blue ribbon or a puzzle piece ribbon, please ask about autism. Families wear it for a reason, and we wear it with pride. we look into our children’s eyes and see hope. we would like for others to do the same.
You wouldn’t be reading this newsletter if people with intel- lectual and developmental disabilities were not important to you. You care. You worry about someone: your child, your sister or brother, or your friend’s, neighbor’s, or relative’s child or sister or brother. Maybe you are just the exceptional person whose connection with people with disabilities is simply the love and concern of a fellow traveler in this particular space and time we call life.
You care about the future of this world, even after you are no longer in it.
Leaving a legacy through planned giving will provide you with the knowledge that the impact of your love will be felt long after your death. Your good deeds do not have to die. thoughtful plan- ning now can ensure that the Council can continue to grow and expand as the only advocacy organization that serves all people with developmental disabilities in Kentucky—whatever their age, whatever the source of the disability, wherever they live. Most importantly, thoughtful planning now can ensure that opportunities, inclusion, and joy will continue to grow and expand in so many lives because of you.
As an added bonus, planned giving may even:
may be expected from the current income
Charitable giving is not only for the wealthy! there are many types of planned gifts, trusts, and bequests, both large and small. planned giving need not be complicated. if you are interested in learning more about leaving a legacy to the Council on Developmental Disabilities, please call Donovan Fornwalt at 502.584.1239.