State seeks comments on Medicaid waiver recommendations by June 15
The message at a recent town hall meeting about recommended changes to state programs for people with disabilities was loud and clear:
“Send an email, send an email, send an email!”
That’s what Jill Hunter, deputy commissioner with the Kentucky Department of Medicaid, told people gathered at the Ralph Rush Center in Florence on May 11.
“Your ideas and thoughts matter,” she said.
The town hall in Florence was one of 10 such meetings held around the state in May to share updates and gather feedback on preliminary recommendations to improve the state’s six 1915(c) Medicaid waiver programs. Those programs are designed to help people with disabilities gain services and supports that allow them to live in their homes and communities rather than institutions.
At this time, Hunter said at the meeting, the state does not plan to reconfigure any of the waivers. The state will continue to seek comments and questions from those affected by the waivers, Hunter said, adding that those on waiting lists for waivers also are encouraged to send comments and questions. Navigant Consulting, Inc., hired by the state to study the waivers, will use that information to issue final recommendations this summer.
Comments and questions should be directed to MedicaidPublicComment@ky.gov. by June 15 to be considered in the final recommendations. For a summary of the preliminary recommendations, email project manager Lori Gresham at lori.gresham@ky.gov.
The state also plans to compile and share with the public a list of Frequently Asked Questions from the comments received at the town halls and through emails. Hunter stressed the importance of “stakeholder engagement” and said the state will take its time and ask good questions in the review and recommendation process.
The state began assessing the waiver programs more than a year ago. In April 2017, Kentucky hired Navigant to study the waivers and recommend ways to improve them. In the fall, the state held 40 focus groups across Kentucky to gather comments from waiver participants as well as caregivers, family members and providers. Navigant also assessed each waiver and interviewed state staff.
From that work, Navigant created its preliminary recommendations, which were presented at the town halls. The recommendations address issues that include ease of understanding and use of the waivers, participants’ needs assessments, budgets based on individual needs, payment rates for providers, case manager training, and improved participant experiences.
The six waivers are Home and Community-Based, Michelle P., Supports for Community Living, Acquired Brain Injury Acute, Acquired Brain Injury Long-Term, and Model II, which is for individuals who are dependent on a ventilator for up to 12 hours a day.
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Changes may be in store for the various Medicaid waivers that help provide care and services for people with disabilities. Regarding those possible changes, a state advocacy group is asking for public input.
The Commonwealth Council on Developmental Disabilities is conducting an online survey of people with developmental disabilities and their families as it prepares to make recommendations to the state. The Council, which operates out of Frankfort and comprises members from around Kentucky, strives to empower individuals so that they achieve full citizenship and inclusion in the community.
About the waivers, the Council wants to know what works well and what needs improvement. Surveys should be filled out as soon as possible, preferably by the end of this week. You can find the survey here or at https://www.surveymonkey.com/r/6QVZQ2X.
The survey was prompted by plans of the Kentucky Department of Medicaid Services to assess the state’s waiver system. These waivers are Home and Community Based, Michelle P., Supports for Community Living, Model II, Acquired Brain Injury and Acquired Brain Injury Long Term Care.
The waivers provide extensive services for the elderly and disabled. Services vary by waiver and include physical and occupational therapies, respite, nursing, behavioral supports, community living supports, personal care, employment supports and others.
The Bean Bash – a down-home, big-hearted October tradition at Turfway Park in Florence – gets under way this weekend. It’s an event filled with family, friends and co-workers, food, auctions and entertainment, all coming together to help children and adults with disabilities in Northern Kentucky.
The weekend starts with painting and poker Friday night. Volunteers fire up the kettles for the Bash’s signature bean soup early Saturday morning before the start of the Bean Bash Dash, a 5K walk/run. Soup’s on at 1 p.m., and served with it are cornbread, coleslaw, tomatoes, hotdogs, chips, ice cream and soft drinks, all included in the $5 admission. Children under 12 are free.
This will be the event’s 43rd year. That’s a lot of years. And a lot of beans.
To learn more about the event, and all those beans, I talked with Bean Bash President Donnie Martin, who first got involved with the Bash about 10 years ago as a bartender. He moved on to oversee the Texas Hold ‘Em tournament for a few years and is now in his third year as president. Here’s a condensed version of our conversation supplemented with information he sent me.
Bean Bash President Donnie Martin
Q: I have a daughter with special needs, and I was touched by how many of her friends we’ve seen at the Bean Bash over the years. It’s a huge event but has a welcoming, close-knit feel – like a church festival or something similar. How would you characterize it?
A: It’s a very similar atmosphere as a church festival, but with a lot more wonderful items to be won in the silent and live auctions. Everyone is welcome, from the most able-bodied athlete to those with special needs who may not often get to special events like festivals.
I greatly enjoy seeing the clients of the specials needs charities in attendance for a couple reasons. First I’m glad to see so many of them out and about, and I hope that helps them see they are not alone and that many others go through what they go through. Second I hope the Bean Bash opens other people’s eyes by introducing them to people with special needs that they may not have experienced before.
I grew up with a step sister with special needs. When we first met I didn’t understand why she was the way she was. That wasn’t easy to handle at 7 years old. Some people reach adulthood with little to no interaction with a person with special needs. Years ago, families with special needs children were shunned, embarrassed, and often hid or abandoned their children with special needs. Now they have options, and the Bean Bash supports local charities that provide those options.
Bidders browse tables at the Bean Bash silent auction. The auction raises money for BAWAC, New Perceptions, Redwood and Special Olympics of Northern Kentucky.
Q: How much money does the Bean Bash raise?
A: Last year the event brought in a record $121,250. Some money came out of that to cover costs, but we try not to pay for much. Donations from local businesses and individuals keep our expenses down. I would guess we have less than $5,000 in expenses and that might be high.
We support four local charities that serve people with disabilities: BAWAC; New Perceptions, which was added last year; Redwood; and Special Olympics of Northern Kentucky. Each organization collects auction items and receives the proceeds from those. The Bean Bash board’s portion – money from the door, donations, live auction items, and extra events like the 5K and poker tournament – is divided evenly among the charities.
Q: What’s new at this year’s Bean Bash?
A: We were looking for an event to complement the Texas Hold ‘Em tournament on Friday night and decided on a Wine and Paint event, sponsored by Wine & Canvas of Florence. The cost is $45, which includes supplies and step-by-step instructions to create a piece of artwork to take home. A glass of wine or a cocktail, light food, and admission to Saturday’s Bean Bash are also included.
The Wine and Paint will start at 7 p.m., the same time as the Texas Hold ‘Em tournament. Both will take place on Turfway’s third floor. Registration for the Wine and Paint ends Wednesday, Oct. 5. Participants can register at www.beanbash.org or contact Becky Price at 859-760-3951 for group discounts and pricing. The $75 online preregistration for the Texas Hold ‘Em ends Thursday, Oct. 6. Players can register at the door for $85. The door to both events opens at 6 p.m. on Friday.
We’ve never stayed open after the live auction, but this year we’re having an after-auction concert by popular local band Doghouse. The band has quite a following, so we’re hoping the concert will bring more people out.
Another exciting addition is an employment drive. During the Bash, FedEx will be set up to accept applications for full- and part-time jobs at FedEx Ground in Independence.
Bean Bash by the numbers:
Years held: 43
Organizations helped: 4
Guests expected: more than 2,000
Volunteers: about 300
Bowls of soup: nearly 2,000
Pounds of dried beans: 200
Large pans of cornbread: 40
Hot dogs: 1,200
Bags of chips: 1,000
Gallons of Ice cream: 50
Q: The Bean Bash added a trap shoot last year as an additional way to raise money. How did this year’s trap shoot go?
A: It went well, especially since the rain held off. We had 25 shooters in the tournament, and raised about $1,000. Last year we held the trap shoot on a date after the Bean Bash. This year we did it beforehand, on Sept. 17. We had a lot more people come out this year, and we hope to keep it growing. It was sponsored by the Crittenden AAA Gun Club and held at the Lloyd Wildlife Management Area.
Q: Where do the Bean Bash volunteers come from?
A: We have students who volunteer from many schools including Boone County, Cooper, Ryle, Notre Dame, St. Henry, Covington Catholic, and Immaculate Heart of Mary. Other volunteers include the charities’ employees, Boone County Business Association members, local pageant winners, news personnel, local celebrities, and family and friends of the Bean Bash board and charities.
Q: Who are the people on the Bean Bash logo?
A: The face on the right represents former State Representative Bill McBee, who founded the Bean Bash as a political fundraiser in 1974. The other face is that of Stevie McBee, Bill’s son, who had special needs. Stevie inspired organizers to transform the Bean Bash into a fundraiser for charities serving people with disabilities. Stevie died in 2009, and Bill in 2011.
Many people thought for years that the Bean Bash was a political event, but it has been a charity fundraiser since 1975. No campaigning is allowed.
Q: How is that soup made?
A: The beans get soaked the night before, and the cooks arrive before 6 a.m. to fire up the kettles. Sand goes down on the parking lot, and cooks build fires to set the kettles over, using air deflectors to help regulate the heat. Piles of wood are out there for the cooks to feed the fire. The health department is out there to make sure everything is set up right.
When the water is boiling, the ham hocks go in. Once cooked, the hocks come out and the ham is cut off, chopped and set aside. Next go in the beans, white pepper and onions to cook. Eventually we throw in the ham from the hocks and extra ham. Sometimes hot sauce gets put in, sometimes it doesn’t – it’s always a matter of opinion depending on whose out there cooking.
The soup is cooked for hours in the same cast iron kettles and stirred by the same wooden oars we’ve used for years. They probably have their own special seasoning. One seasoning that’s not added to the beans is salt. We stopped using that years ago, so if you like your beans salty, you need to use the salt packets offered with the meal.
Usually a couple of generations of people come out to cook. Several of the bean cookers started out as kids helping their fathers. They use the lessons they learned as kids to bring their youth into the world of community service.
Volunteers cook the bean soup in cast iron kettles and stir it with oars.
Bean Bash 2016 Schedule of Events
Friday Oct. 7
6:00 p.m. Registration Open
7:00 p.m. Wine and Paint event begins
Texas Hold ‘Em Tournament begins
Saturday Oct. 8
10:00 a.m. The Bean Bash Dash 5K registration opens
11:30 a.m. The Bean Bash Dash 5K begins
1:00 p.m. The Bean Bash begins, admission $5.00 (kids under 12 free)
1:00 p.m. Silent auctions begin / All charities have items for auction
2:00 p.m. Live music begins
4:15 p.m. First silent auction table closes (Redwood)
4:30 p.m. Second silent auction table closes (Special Olympics NKY)
4:45 p.m. Third silent auction table closes (New Perceptions)
5:00 p.m. Fourth silent auction table closes (BAWAC)
5:00 p.m. The 43rd Bean Bash remarks and presentations
5:30 p.m. Live auction begins
7:30 p.m. (estimated) Doghouse rocks The Bean Bash
I have an aunt who has been instrumental in an organization called Ms. Wheelchair Kentucky for years. I’d heard about it through the family grapevine on occasion but never really knew much about it. Then I started this blog.
Aunt Pat, or Pat O’Bryant to most people, asked me to help get the word out about the upcoming pageant in Louisville. So I looked into Ms. Wheelchair Kentucky to find out what it’s all about.
I found out that Ms. Wheelchair Kentucky is all about education, advocacy and opportunity. The organization gives women in wheelchairs a means to educate society about the achievements and needs of people with disabilities. It gives them a platform to advocate for change to improve the lives of people with disabilities. And it gives them the opportunity to branch out into the world.
I also found out that the pageant, which is not a beauty pageant, has a strong Northern Kentucky connection.
But first, Aunt Pat wants you to know some things:
She wants you to know that the organization needs contestants. Now.
She wants you to know that the application deadline for the pageant is Monday – but if you need more time, especially to get together the $400 fee that helps pay for the pageant, just let her know. “We will work with them,” she said.
She wants you to know that contestants should be US citizens aged 21 to 60 who have lived in Kentucky for at least six months and who use a wheelchair or cart for all of their mobility outside the home.
She wants you to know that contestants should be accomplished and articulate because the winner must be able to communicate with the general public, the business community and elected officials.
The Ms. Wheelchair Kentucky pageant will be held Nov. 5. The pageant venue recently changed; it is now Jefferson Community and Technical College at Broadway and Second St. in Louisville. The winner of the state pageant goes on to compete in Ms. Wheelchair America, which will be held Aug. 14-21 in Erie, Penn.
Aunt Pat, also known as Pat O’Bryant, Kentucky state coordinator of the Ms. Wheelchair America Program
Aunt Pat knows a little about these competitions. While talking with her, I learned that her husband, a.k.a Uncle Tom, used to be the president of Ms. Wheelchair America. And then Aunt Pat was the executive director of the national organization some time after that, in addition to working as the Kentucky state coordinator.
“They’re my heroes,” Aunt Pat said of the contestants. “The things they overcome …[are] unbelievable.”
Now, about that Northern Kentucky connection: Robbin Head, of Burlington, lived in Louisville when she was 38 years old and suddenly found herself with a disability.
She was goofing around with her husband one day when he picked her up from behind in a playful bear hug and her vertebrae fractured. She eventually found out that she had severe osteoporosis and was told it was not a matter of if her vertebrae would fracture, but when. The injury left her paralyzed.
This woman – who had joined the military at 18, had married and lived all over the world – now needed a wheelchair to get around.
Three years after her injury, in 1998, a vocational rehabilitation counselor working with Head in Louisville suggested she enter the Ms. Wheelchair Kentucky pageant. It was the first year for the pageant after an independent delegate from Kentucky, Terri Cecil, won Ms. Wheelchair America and came home to start a state organization.
“The Ms. Wheelchair pageant is what really helped me discover and more understand the world of disability,” Head told me when we spoke on the phone recently.
Head didn’t win that year, but she entered again. She was crowned Ms. Wheelchair Kentucky 1999 and went on to compete in Ms. Wheelchair America. While she didn’t place in the national competition, Head relished spending the week with so many other women in wheelchairs.
“It was probably one of the most rewarding experiences that I have ever been to in all of my life,” she said. “It made you feel like you were really part of a community again and part of actually the real society because you didn’t feel like you were the only one sitting there in a wheelchair.”
Robbin Head, Ms. Wheelchair Kentucky 1999
After her Kentucky reign, Head, who moved to Northern Kentucky in 2000, served as the state organization’s president for six years. More recently, she’s in her sixth year as the pageant’s head judge. As you might expect, she speaks highly of the program and encourages women to participate.
“It’s a way to be in touch with not just being a woman in a wheelchair but a woman of the world,” Head said. “It makes you feel like you’re part of something more than just being yourself, that there’s a place that wants you as a woman or as a person with a disability to use your voice and to use your experience to help others.”
Ms. Wheelchair Kentucky strives to give voice to the needs of those with disabilities of all kinds, whether they are mental, physical or both, she said. The organization, she said, educates the public about special needs and “why we are different and yet very much the same as the able-bodied community.”
If you know a woman in a wheelchair who might be interested in this effort, please get them in touch with Aunt Pat. You can email her at patobryant@bellsouth.net. You can call her at 502-394-9160. You also can visit the Ms. Wheelchair Kentucky website to find out more. And if you think this is a great program and want to support it, Aunt Pat is always looking for sponsors.
Aunt Pat is not the type of person who needs anyone to speak for her, but I’ll go out on a limb here as her niece and say this: Aunt Pat thanks you.
My family and I once found ourselves on the road from Louisville to Lexington in the midst of a snow storm. Flakes fell fast and thick and covered the painted lines that marked lanes and edges of asphalt. Wipers brushed snow off the windshield, and we looked out onto a landscape with no clearly defined road. Except for one clue: travelers before us left tracks in the snow. As the snow deepened around us, we slowly and carefully followed those tracks, grateful for their help in finding our way.
I think about that long-ago trip today, when, on this special needs journey, I’ve been fortunate to meet others who have gone before us through a storm. They’ve helped us figure out how to get an IEP, find respite services, apply for Medicaid, administer the ketogenic diet, obtain guardianship. The list goes on and grows with each passing year, and I am filled with thanks for those who leave tracks for us to follow, who share their advice and experience, who help us find our way.
Valerie Whisnant understands what I’m talking about. When her son, Zack, received his autism diagnosis more than a dozen years ago, someone introduced her to Mothers of Special Children of NKY, a group that’s all about helping moms of children with special needs find their way. Still, she didn’t know what to expect at the first meeting she attended.
“You’re scared to death to be there,” she told me, recalling those early, questioning days of a diagnosis when life is filled with uncertainty. “You don’t have any clue what you’re doing. I mean, it’s all brand new.”
Not to worry. The meeting was good, and Whisnant clicked with other moms. “I’ve been a part of it ever since,” she said. “I gained a lot of friends. I was part of something again. Zack was part of something.”
Now Whisnant is one of four officers of Mothers of Special Children of NKY, serving as the correspondence secretary. We talked recently about the group and its mission.
Any mom, any diagnosis
Mothers of Special Children of NKY welcomes any mom, grandmother or female guardian of a child with any diagnosis, Whisnant said. The group offers emotional support, especially to those just learning of their child’s diagnosis. Those can be difficult days when families may feel alone in their struggles, but MSC lets them know that others have been through similar challenges and understand what they’re facing.
The group offers practical support too, she said, as moms share experiences regarding resources and programs to help their children. The moms in the group have a wide range of experience – from those with young children learning about school services and applying for Medicaid to those with older children who are dealing with guardianship applications and transitioning to adulthood, Whisnant said. To provide targeted help, she said, the group connects moms whose children have similar diagnoses.
“There are a thousand journeys going on in one group,” Whisnant said of the situations members face. “There’s no road map, there’s no manual. It’s just us … it’s everybody helping each other with information.”
So it seems these moms do more than leave tracks in the snow for others to follow. They gather behind fellow travelers and help push them through the storm.
Traveling companions
MSC offers a few ways to join in on the journey:
Its webpage is mscnky.com. The page introduces visitors to the group and its officers and includes contact information.
A Yahoo group enables moms to connect with each other online. Here also the group makes announcements and keeps members informed about community events for people with special needs. To join, go to groups.yahoo.com, search for MothersofSpecialChildren and click on it. You will need a Yahoo email account.
A Facebook page, Mothers of Special Children of NKy, allows members of the closed group to ask questions and share information.
Members meet the second Thursday of each month for support dinners at Northern Kentucky restaurants. Locations are announced on the group’s Facebook page.
Whisnant said the group’s official membership on its database hovers around 50 as new people come and older ones go. The database tracks member residences, contact information and diagnoses so the group can connect new moms with members in similar situations to answer questions or share concerns.
The group’s Facebook page, though, has a lot more members, Whisnant said. Begun in 2013, the page had 129 members at last check. The dinners are smaller gatherings, with attendance ranging from three to more than a dozen. The group, which has existed for decades, used to have a formal meeting structure but found that the dinners attracted more members, Whisnant said.
“You can come and just listen,” she said. “Some want that. Others want to engage right away and want to share their experiences.”
Colleen Bracke began attending MSC meetings when her son Ryan was four weeks old. He’s now 29 and has Down Syndrome. Another son, Sammy, is 27, has spina bifida and is on the autism spectrum.
You can come and just listen. Some want that. Others want to engage right away and want to share their experiences.
“It was a huge life-saver for me,” said Bracke, noting that she’s not the type of person who asks for help. The support and information she received, along with the friendships she made, helped her cope with her family’s challenges, she said. “I know I cried on a lot of shoulders.”
Bracke also helped others. The group used to have a phone line, and for years it came into her house, she said. While she’s not as involved now that her sons are older, MSC’s impact has been long-lasting. “Some of the women I am closest to come from that group,” she said.
Over the years Whisnant has noticed how members cycle in and out of the group according to need. Also, as members gain experience, knowledge and a support system, their role in the group changes, she said. “You go from getting information to giving information.”
MSC is all about making a difference in lives – first your child’s, then other families’, Whisnant said. “If we can help any parent in any way, that’s what we’re there for.”
Showing the way. Like tracks before us in a snow storm.
As we forge ahead – whether our journeys take us through snow storms or the challenges of caring for someone with special needs – we leave hope along the road. Maybe without even realizing. As we follow the tracks left by those before us, we leave new marks. We keep the path fresh. We show others that the road does not end. The world does not end. We help others find their way.
Update: As of Oct. 6, this group will meet at the new time of 6 p.m. to 7 p.m.
I’ll never forget the first talent show my daughter performed in. She was maybe 11 years old when she stood on stage at epilepsy summer camp and recited a song she had learned in preschool, complete with finger movements, about a caterpillar who turned into a butterfly. To finish up her act, she turned a cartwheel.
The crowd went wild.
The crowd went wild for each act, and the performers beamed their pride and delight, as if they all were caterpillars turned to butterflies.
Ever since that talent show, I’ve been a fan of stage work for children with special needs. Now a program in Northern Kentucky brings the pride and delight of the performing arts to teens of all abilities. The program is called Dramakinetics – a word that names a method as well as an organization.
Dramakinetics, the method, uses movement, music and drama to encourage participants to express themselves creatively. While doing so, participants build confidence and friendships and learn new skills and information. Educator and religious sister Jannita Complo created Dramakinetics in 1974 for her doctoral dissertation at Wayne State University in Michigan. The program guides teachers in using the arts to teach academics and help students express themselves.
Dramakinetics, the organization, operates out of Cincinnati, offering performing arts activities to help children, teens and adults of all abilities reach their creative potential. The instructors work with schools and organizations and also offer instruction for home school students. Founder Pam Shooner, an educator and local performer, incorporated the non-profit organization in 2007.
In this video, Shooner talks about the program. “You can learn anything through Dramakinetics,” she says. “That’s why I believe in it.”
Earlier this year, Dramakinetics made its way across the Ohio River to offer a teen group called Creative Chaos. Instructors guided participants to create community productions infused with their particular interests. For instance, one session produced a play that included a queen, princesses, One Direction music and a villain. (Full disclosure: My daughter was in it, and it was brilliant!)
Dramakinetics hopes to grow in Northern Kentucky. Here’s a bit from the website: “This class will not only introduce the students to the various aspects of theater but also encourage them to have confidence in their creative ability and the courage to be themselves. We are very excited to see what this group will put together!”
The next session starts Thursday. Here are the basics:
Ages: 13-20
Place: Stage One at First Church of Christ, 6080 Camp Ernst Rd., Burlington, KY 41005
Time: 7 p.m. to 8 p.m.
Duration: The ten-week session runs from Sept. 8 through Nov. 17.
Cost: $17 per class, $170 for the session. A $10-discount applies if the cost for the session is paid in full by the first class.
This blogging journey just took an exciting new turn! Thanks to the people at Skyward and the Center for Great Neighborhoods, I’ve received a grant to upgrade Special Needs Northern Kentucky. To top it off, the grant includes money for a community celebration to launch the improved blog.
The grant is part of the myNKY Nano Grant Program, which awards up to $250 each to projects that propose creative ways to strengthen communities.
While Special Needs Northern Kentucky has had steady traffic from readers connected to its stories, the grant money will pay for changes aimed at making the blog easier to find on the internet. I hope the upgraded blog will create a larger community around the stories of people, events and organizations working to improve the lives of individuals with special needs in Northern Kentucky.
Here’s a bit from my grant application:
“The special needs community is far-reaching and diverse. … My [upgraded] blog would create a web of understanding, connections and support. It would strengthen community by bringing information from around the region into one place. It would open possibilities and provide hope to families who may often feel isolated. It would create understanding in the wider community by bringing these stories to light.”
Well, that’s a tall order. But there seems to be some mysterious drive urging me on. I can explain it about as well as I can explain how to get this blog to show up on search engines. Even while applying for this grant, I felt it. I read over information about the application for weeks, maybe months, and then, as if a kind stranger came along to push my stalled car on a lonely road, I began to move. I wrote my application on deadline day.
I got the full grant amount, and I plan to begin posting on the upgraded Special Needs Northern Kentucky in September. I am not the least bit tech savvy, so I am giving myself plenty of time to make the changes.
As for the community celebration, I’ll update you when the details are finalized. The grant program requires recipients to include in their project a free, publicly accessible element. The grant is also tied to a geographic location — in my case, the Florence area, since that is where I work — so I plan to organize a fall gathering at a local park for families and others with ties to the special needs community.
I plan to organize a fall gathering at a local park for families and others with ties to the special needs community.
In the meantime, I want to thank readers for reading my posts, sharing them and leaving comments. I want to thank those who have signed up to follow the blog. My blog site tracks the number of visitors, and I admit that I check those stats often. (It’s all anonymous, though I can see what country visitors are in.) Your visits are the fuel that keeps me going.
I want to thank the people who’ve talked with me for interviews. Thanks for sharing your stories and trusting me to tell them. It’s an honor. Thank you for inspiring me with your spirit, enthusiasm and hard work.
And I want to thank the people at Skyward and the Center for Great Neighborhoods for the work you do to strengthen Northern Kentucky. Thank you for awarding grants that encourage creativity and build a sense of community. Thanks for helping me travel this road.
The Aubrey Rose Foundation is looking for models to grace the runway in its Grand Finale of the American Girl Fashion Show.
Beginning Saturday, girls ages 4 to 13 are invited to “model calls” in Northern Kentucky and Cincinnati. The fashion show, begun in 2004, brings a love of American Girl dolls and fashions together with a passion for helping families of ill children.
The foundation got word in the spring that American Girl has decided to discontinue the fashion show after 2016, so the Grand Finale – to be held Dec. 2-4 – will be the last show in the Cincinnati area.
The show usually hits the runway in April, as it did earlier this year at Music Hall in Cincinnati. Around that time, organizers got word from American Girl’s corporate office about the end of the shows, which are held across the country to raise funds for charities.
Even though they were just finishing up April’s show, the people at the Aubrey Rose Foundation got busy and made plans for a final show to be held at Northern Kentucky University’s BB&T Arena.
Organizers hope to go out in style. The fashion show is the foundation’s biggest fundraiser, bringing in more than $100,000 annually, said Nancy Hollenkamp, Aubrey Rose co-founder and executive director. “The bigger and better the show is, the more help we can give,” she said.
Money raised from the show goes to help families with severely ill children pay their medical bills. Aubrey Rose has given families more than $1 million in the past 14 years, according to its website. Its mission includes the entire family with efforts to lift them up emotionally as well as financially.
The fashion shows are a joyful way to help. Girls model American Girl fashions and carry American Girl dolls. They walk the runway, making their turns with big smiles and maybe a few nerves while announcers describe their clothing, cameras snap and the audience applauds.
My daughter modeled several years ago. As I sat in the audience and enjoyed my American Girl tea party, which is included with a ticket to the show, the scope and beauty of the project astounded me. Organizers efficiently moved hundreds of people in and out of the venue for seven shows over a weekend. I remember lots of flowers around the raised runway. The commentary was a mini-history lesson as girls modeled the historical outfits. And the models seemed full of pride and joy, especially at the end when they were called together onto the stage for a rose ceremony.
The event, though, is more than a weekend. It’s a four-month experience.
First come model calls. Here girls and their families learn about the Aubrey Rose Foundation and what modeling for the show involves. The girls get registered and are measured so that organizers can determine what outfits they will wear.
Model calls are meant to be a fun experience, Hollenkamp said. Each girl gets a passport to get stamped as she moves from station to station, completing activities. There’s a runway to walk, a selfie station, a posing station.
The main criteria for prospective models is that they be able to wear girls’ sizes 4 to 16. Because the fashion show is a fundraiser, models donate $100 to participate. The money is due by Sept. 25, and Aubrey Rose provides support if girls want to raise the funds. For their donation, each model gets $100 worth of raffle tickets that are entered into a drawing for an American Girl product.
Grand Finale model calls start Saturday at Tri-County Mall in Cincinnati in the former space of Men’s Wearhouse, near the mall entrance closest to Sears, and continue there on Sept. 17. Model calls at Newport on the Levee are slated for Aug. 27 and Sept. 10 in the former IMAX Theater space.
To register for a model call, you can click here and hover over the Models tab on the top, then click Model Login from the drop-down list to create an account or access one already established if your model was in a previous show. Here you can select a time and place for a model call. Last I checked, available times ranged from 10 a.m. to 2:30 p.m. depending on location.
Next on the list is Model Fits and Pics on Oct. 22 at Tri-County Mall. That’s when models try on their outfits and sit for a photo shoot with a professional photographer. Each model will receive a free 4×6-inch photo and the option to purchase a 10-pose photo CD for $50; the purchase includes all rights to use the photos however you like.
In October and November, models also will have the chance to learn from professionals how to rock the runway. Details for runway workshops are upcoming.
Models are assigned to shows based on outfits, sizes and availability. Show assignments will be announced on Oct. 3.
It’s a lot to take in. As a model mom years ago, it seemed a bit daunting at first. But each model has her own web page to keep track of activities, which I found very helpful. On the Aubrey Rose website, you can find answers to the most frequently asked questions.
If you can’t find the answer you need there, I’ve found the people at Aubrey Rose to be responsive, reassuring and helpful. My daughter has special needs, and the volunteers were great about making her experience – and mine – comfortable and fun.
In her honor
Nancy and Jerry Hollenkamp started their foundation in honor of their daughter Aubrey Rose, who died Nov. 10, 2000, two days before her third birthday. In her short life, Aubrey spent months and months in the hospital and required five major surgeries, including heart and double-lung transplants, to treat rare and complex medical issues that began when she was born six weeks early with two holes in her heart.
Aubrey was the third child, the baby of the family. So when the Hollenkamps talk about helping to lift a family out of the complexities that occur when a child has a serious illness, they speak from deep, personal experience. Always, they say, Aubrey had a smile and happy spirit. The Hollenkamps want to share that spirit through their foundation.
To find out more about the foundation, its programs and Aubrey’s story, click here.
Here’s a link to information about applying for financial aid from the foundation.
The last hurrah
Over the years, the fashion show has brought many rewards in addition to the money it has raised.
“The kids love why we do the fashion show. They embrace that,” Hollenkamp said. “And that’s the neatest thing to see the kids knowing that they are helping us help the (other) kids. They get it so much.”
Hollenkamp also has enjoyed seeing the models grow throughout the years. Some of the girls modeled for as many as six years and then became commentators at the show. “That has been just wonderful,” she said.
The news about the show’s end wasn’t easy to take. “It crushed me. When American Girl called me, it crushed me,” Hollenkamp said.
The American Girl Fashion Show began nationally in 1992 as a way to help nonprofit organizations use the popular American Girl brand to raise money for children’s charities while providing a memorable experience for participants, wrote Susan Jevens, associate manager of public relations with American Girl, in response to questions I emailed. Aubrey Rose has been a “valued partner for 13 years and has made a significant impact in helping families care for children with life threatening illnesses,” she said.
About 62 shows are held annually, and the concept has proven successful over the past two decades, Jevens said. However, she said, many host organizations have begun to have trouble meeting fundraising goals. In response, American Girl is exploring a fashion show format to be held at its retail locations to support local children’s hospitals.
“American Girl is proud of its long history of giving back to communities and pleased to continue offering an updated version of the program to help children in need,” Jevens said.
Hollenkamp remains hopeful that her organization will find other means of supporting its mission. “When one door closes, another door opens,” she said. “I can’t wait for you to see what’s in store next.”
To the parents and models, Hollenkamp says thanks for the support all these years. “We’ll miss seeing them every year,” she said, “but we’re hoping that whatever we come up with next that they can embrace us again.”
For other ways to support the Aubrey Rose Foundation, visit its website at www.aubreyrose.org. There you’ll find information about the following:
Fireworks Spectacular on Sept. 4 aboard the Belle of Cincinnati for the Western & Southern/WEBN Fireworks Presented by Cincinnati Bell.
Let’s Dance for the Heart of It! Gala on Nov. 11 at the Hilton Cincinnati Netherland Plaza.
Above and Beyond Doctor of the Year Award, which is seeking nominations until Sept. 16 for top doctors from Kentucky, Indiana and Ohio who specialize in treating children with an emphasis on heart, lungs or general pediatrics.
Writerly Sew, which embroiders shirts and apparel for businesses and organizations and gives all proceeds to ARF.
When you walk through the doorway of Room 227 at New Perceptions in Edgewood, you step into a world of possibilities.
Paintings, sketches, sculptures and other works of art line shelves, sit on tables and are propped along walls. Canvases, clay, wire and art supplies of every kind fill cabinets, drawers and other shelves. It’s a colorful, inspiring room, busy but not cluttered.
This is the home of Art Abilities – where imagination reigns and creative magic happens.
On a recent Tuesday morning, Erick Winburn dipped a brush into pale blue and green paints. He leaned over a sculpture and dabbed the paint onto clay that he and his buddy and fellow artist Billy Bach had pinched and placed to represent water. Driftwood and rocks Winburn had collected sat amid the clay water. Perched on the driftwood was a fisherman he had fashioned out of wire and spray painted.
Finding ways to use diverse materials is one of the reasons Winburn likes the Art Abilities program. “It challenges me,” he said. The wire can be hard to work with, but “it’s worth it in the end.”
His inspiration? “I like to fish, myself, and I just thought it’d look cool to make.”
The 16 artists who work here, all adults with developmental disabilities, are a busy bunch. They paint, sculpt and sketch for the world outside their doorway.
“We have lots of hands going,” instructor Peg Kendall said while showing me around the studio. “We always have the mind-set to have pieces in the community.”
Erick Winburn’s fondness for fishing inspired the work-in-progress he sits beside in the Art Abilities classroom at New Perceptions.
Winburn’s sculpture, for instance, will be on display at the New Perceptions Annual Dinner on Aug. 23 at Receptions in Erlanger. Each artist “has a goal to be in the community themselves,” Kendall said, “so having their work in the community is an extension of that.”
Kendall’s enthusiasm for her students is apparent as she talks about them and their work. “They are the most motivated and creative people,” she said. The program doesn’t follow a curriculum. Instead the artists decide what they’re going to learn. “It comes from the heart,” Kendall said, “and it comes from them.”
With pride Kendall ticks off the community events the artists are preparing for. For the annual dinner, Kendall plans to display 25 to 30 pieces, enough to represent as many of the artists as possible. Currently eight pieces from the studio are entered in a show at Art Beyond Boundaries, a gallery on Main Street in Cincinnati that showcases and sells the works of local and regional artists with disabilities. On Aug. 5, that show will end and a new show will begin with, Kendall hopes, seven or eight pieces from her studio.
“They are the most motivated and creative people.”
The artists also will show their works at Art in the Park in Bellevue on Sept. 10. At Art on the Levee in Newport, visitors can find wire sculptures, similar to Winburn’s fisherman, for sale throughout the year.
Wire sculpture is a favorite among the artists, Kendall said. The studio started producing the sculptures about five years ago after researching and finding that no one else in the area was creating them, she said. The sculptures require fencing wire, rebar wire or “whatever we can lay our hands on.”
The artists, sometimes collaborating on the same sculpture, twist the wire into figures – a wire ball for the head and wire columns for the trunk, arms and legs – and then give them a job to do. Three wire figures, for example, appear to be rappelling on the wall outside the Art Abilities door.
Tim Adams creates a piece at the pottery wheel.
In addition to paintings and sketches, program participants also work on tile mosaics, ceramics and engravings in glass and wood. Thanks to a recent grant from the Elsa Heisel Sule Foundation, the studio has added a pottery wheel and airbrushing equipment.
“We very much try to cater to their interests, even if it’s Pittsburgh Steelers junk,” Kendall said loud enough to get a reaction from Winburn and Bach, both fans of that other football team from that other city.
It’s all good-natured ribbing. A sense of camaraderie spreads easily through the room like paint on canvas.
“I love it,” Bach said when asked his opinion of the art program. He enjoys being in the studio, making friends and “being around that woman right there,” he said, pointing to Kendall.
Billy Bach recently finished this canvas painting. His next project will be a painting of Batman.
Bach recently finished a collage-type painting, and for his next project, he’ll paint Batman to fulfill a request from a customer. The studio occasionally gets requests for work, which encourages the artists, said Kendall, who is also the assistant manager of The Learning Center at New Perceptions.
When an artist sells work, half of the money goes to the artist and half to the Art Abilities program. Often the artists donate their half back to the program by using it to buy supplies, Kendall said. “They can see the difference they’re making.”
In addition to visual arts, Art Abilities also teaches sign language and music, including drums, piano and guitar. “Art Abilities is an all-day party,” Kendall said.
After visiting this all-day party, images of the artwork and the people have stayed with me. For some reason, though, one surprising image keeps coming to mind – the doorway to the Art Abilities room. Maybe it has stayed with me because it seemed so open and welcoming. Maybe I think of it because it stands in contrast to the many closed doors people with disabilities may encounter. The students who walk through this doorway have other doors opened to them – doors to creativity, to relationships with fellow artists, to the larger community. Open doors. Open hearts. Art Abilities.
The Art Abilities program is offered to adults 21 and older with a developmental disability. The potential participants also must have a Medicaid waiver. For more information and program availability, please contact Marlayna Cooney at mcooney@newperceptions.org.
Top photo: A variety of works by Art Abilities students are displayed at the 2015 New Perceptions Annual Dinner.
Photos provided by New Perceptions.
About New Perceptions
I’d heard of the organization for years but wasn’t sure about what it offered. Development Director Emily Prabell broke it down for me with the following brief history and overview:
New Perceptions was founded by a group of concerned parents in 1952 to offer services that were scarce in the community at that time for children with special needs. Thanks to parents who wanted the best for their children, individuals with intellectual and/or developmental disabilities receive opportunities for education, growth and employment in a normalized setting to help each person reach his or her maximum potential.
Our Children Services program offers home-based and on-campus specialized therapeutic intervention – occupational, physical, and/or speech – for a variety of developmental needs. An eight-week summer program, Bridging the Gap, offers unique small-group therapy with a focus on sensory movement, social communication and therapeutic school-readiness.
Services for adults include Supported Employment, The Work Center and The Learning Center. Supported Employment offers in-depth, one-on-one support from employment specialists. Participants learn job skills, how to get a job, and techniques to cooperate with coworkers and supervisors to best succeed on the job.
TheWork Center provides employment at the New Perceptions campus in parts assembly, kit assembly, collating, bagging, labeling, rework and packaging jobs for small items. Participants learn diverse work skills and increase independent functioning skills.
TheLearning Center, new in January 2015, offers adult participants educational opportunities in three supportive settings. The Adult Learning Classroom offers structured learning in topics such as comprehensive reading, life skills reading, life skills math, cooking, health and current events. Adult Day is a relaxed setting for individuals who need greater one-on-one support in learning life skills. Activities are planned and led by staff throughout the day. Art Abilities is open to students who want to learn skills and/or express themselves through art such as sketching, water color, wire design, guitar, piano and sign language.
Young baseball players in blue jerseys and caps sat on the aluminum stands in the Saturday morning sun at Lincoln Woods Park in Florence. After a huddle in the infield that ended with the collective shout of “Team!” the players had just walked off the field of the season’s final game.
Parents, relatives and friends clapped and cheered as Coach Greg Ashcraft stood before the stands and called each player by name. Ashcraft tried to say a bit about the players, maybe how long they’d been in the league or how much they’d improved, as he presented trophies to celebrate a season well-played. Cameras snapped and players beamed as they shared their trophies with their fans.
The scene seemed familiar enough for this time of year. But each player on this team has special needs that might prevent him or her from playing on a traditional baseball team. So they came to play here — Bambino Buddy-Ball.
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The faces. When I think of the Bambinos, I think of faces full of joy. Bright eyes and big smiles when players catch a ball or connect for a solid hit. I think of faces strong with determination. The intent and focus when players dart for first, kick up dirt as they round the bases, and bound onto home plate to punctuate their score.
This spring marked the fourth season in our area for Bambino Buddy-Ball, a division of Northern Kentucky Baseball. It was the fourth season to experience the excitement of America’s pastime and to learn what it means to belong to a team. The fourth season to play the game with joyful determination.
My daughter has played Buddy-Ball for two seasons, so I’ve watched a game or two. The faces of fellow fans are something to see too – full of excitement, pride and hope. All these great expressions on all these faces caused me to wonder about the league. What’s its past? What’s its future?
To find out, I talked with Ashcraft. One of the lucky people who turned his love of sports into his vocation, Ashcraft makes his living training and coaching youth athletes in the area. For NKB, Ashcraft is a utility player. He plays administrator, sitting on the organization’s board of directors and overseeing the Bambinos. He plays coach, guiding Bambino players during Saturday morning games. And he plays baseball dad, cheering on daughter Grace, one of the Bambinos.
Bambino Buddy-Ball gets its name from one of the many nicknames of legendary baseball player George Herman “Babe” Ruth. It was established in 2000 by the national Babe Ruth League, with which NKB is affiliated. The young Northern Kentucky division has been in a building phase. Word is spreading, the division is growing, and this season, Ashcraft said, 55 players wore the Bambino patch on their uniform.
Team photo by Pawsat Pro Photo.
It takes a community
Marketing is a key to growing the Buddy-Ball division, said Ashcraft, who came on board two years ago. Through his involvement in the community, Ashcraft spreads the word about the Bambinos in an effort to reach new players and find corporate support and sponsors. A Step Ahead Pediatric Therapy sponsors the Bambinos, helping NKB to offer Buddy-Ball at no cost to its players.
Ashcraft relies on a lot of people for help. “I couldn’t do it without volunteers,” he said.
Other NKB teams come out to the Bambino fields each week to help as buddies and coaches. The volunteers signed up with enthusiasm this season, Ashcraft said, noting that when he sent out a volunteer list with open spots, it got filled immediately. Each Saturday, 20 to 24 volunteers were needed.
A Saturday morning during the Buddy-Ball season is a family affair for the Ashcrafts. Along with Greg and 12-year-old Grace, daughter Hayley, 20, and son Grant, 10, put on their blue shirts and head out to the field. Hayley coaches the younger Bambinos with her dad, and Grant helps as a buddy. Wife Kym watches from the stands.
Baseball binds the family together, Hayley said. “We’re all going to be there, no matter what.”
For the Bambinos, “having fun is all that really matters.”
Hayley told me she’s worked a lot with children with special needs throughout her life, including volunteering with Special Olympics swimming. That work seemed a good fit for the former high school swimmer, but because she wasn’t a baseball player, she wasn’t so sure about coaching when she started last year. “My dad just kind of roped me into it,” she said.
She found herself at ease soon enough. She saw the energy the players had and how excited they were. “It changed my life,” she said. For the Bambinos, “having fun is all that really matters.”
Looking to the future, one particular challenge for the program is limited facilities. The Bambinos play on dirt fields, which can be uneven and difficult for players with walkers and wheelchairs or other mobility issues. There are other leagues for ballplayers with special needs, such as the Miracle League in Cincinnati, that play on synthetic turf. Ashcraft would like to see those kinds of fields on this side of the river for the growing special needs population in Northern Kentucky.
Along those lines, Ashcraft continues to appeal to the community and corporations for support. “We want to continue to make it grow,” he said. “We can make it successful here.”
A love of the game
It may be an odd question when we live in the Cincinnati Reds backyard, but I asked anyway: Why baseball?
“They feel like they’re a part of something,” Ashcraft said of the players. “The experience to get out on a field … and just have that moment to be in the limelight.” It’s an amazing experience, he said, and he hopes the players learn, that even more than winning, “it’s about going out there loving the game.”
In Bambino Buddy-Ball, everyone hits, everyone fields, no one sits out and no one gets out. The players might warm up and work on skills before being divided into teams to take turns at bat and in the field. This season the division played on two fields – one for younger players who hit off a tee, and one for older players hitting machine pitches and off a tee.
Bambinos range in age from 4 to 18, though exceptions may be made, and they are placed on teams according to their age and skills. Buddies help according to need. Some players want a buddy next to them at all times, even running the bases with them. Other players are more independent, but generally everyone gets paired with a buddy in the field. If parents aren’t sure which team is best for their children, Ashcraft evaluates their skills and places them where they will grow as players and have fun.
My daughter certainly enjoys being a Bambino. Anna, 17, said she feels proud and excited to play baseball, especially because she’s following in the footsteps of an older brother. “We get to catch and stuff and we bat,” she told me the morning of the season’s last game after I asked to interview her. “When I bat I have to try to hit it hard and quickly. Sometimes I miss and sometimes I don’t miss and I run to the bases when I hit.”
She also likes being on the field with the volunteers. “There was the Red Dragons that helped us,” she said. “I have a couple of people that are boys that run with me.”
Bambinos line up to shake hands with their buddies after Saturday’s game. Photo by Susan Cline Photography.
Missie and Don Lunnemann appreciate the interaction with peers that their 12-year-old gets while playing Buddy-Ball. “Jake loves working with the other kids,” Missie said as she stood with her husband near the field before the game. The buddies benefit from the experience too, she said, because they get to know the players, see their abilities and talk baseball with them.
Jake has become more social over the past couple of years, Missie said, and Buddy-Ball has helped. Don agreed, adding, “Experiencing a typical athletic sport is very good for him as well.” The couple also praised Ashcraft. “I appreciate Greg’s dedication,” Don said.
Ashcraft champions baseball’s ability to instill confidence and increase independence. He works hard, he said, to encourage independence among the players and their parents. For some parents, this is the first time to turn their child over to someone else, to sit back and watch. For the players, baseball creates memories of accomplishment that they can rely on to bolster confidence in other areas of their lives, he said.
Ashcraft’s most memorable moments on the field swirl around the expressions on the players’ faces and the heart that they bring to the game. He takes joy in their joy when they hold and swing a bat by themselves, when they experience the success of hitting the ball. He enjoys watching them in the field, even when they’re playing in the dirt.
For all of us who love children, it’s an amazing privilege to watch a child grow. Ashcraft said he’s rewarded with that each week during baseball season. And then there’s the impact on the parents. Parents have told him, “I never knew my child could do that.” These are the home-run moments of the job.
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As Saturday’s trophy presentation came to a close, Ashcraft encouraged the players to keep practicing and working hard. He told them to invite others they meet to come out to play with them in the spring. The players climbed down from the stands and prepared to leave the ballpark. No one seemed concerned about wins and losses, outs or hits. They just seemed happy to have had a chance to put on a uniform and play baseball.
Babe Ruth once said, “Never let the fear of striking out keep you from coming up to bat.” As for the players leaving the field on Saturday, they are all great Bambinos.
Find out more
Go to Northern Kentucky Baseball at nkbaseball.com for more information on its Bambino Buddy-Ball division or contact Greg Ashcraft at gashcraft86@gmail.com.
I have an aunt who has been instrumental in an organization called Ms. Wheelchair Kentucky for years. I’d heard about it through the family grapevine on occasion but never really knew much about it. Then I started this blog.
This blogging journey just took an exciting new turn! Thanks to the people at 
The show usually hits the runway in April, as it did earlier this year at Music Hall in Cincinnati. Around that time, organizers got word from American Girl’s corporate office about the end of the shows, which are held across the country to raise funds for charities.
Here’s the show schedule for the big weekend:
Aubrey was the third child, the baby of the family. So when the Hollenkamps talk about helping to lift a family out of the complexities that occur when a child has a serious illness, they speak from deep, personal experience. Always, they say, Aubrey had a smile and happy spirit. The Hollenkamps want to share that spirit through their foundation.
Special Needs Northern Kentucky 