Council seeks input

State to assess waivers

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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.

For more information about Medicaid waivers in Kentucky, visit http://chfs.ky.gov/dms/mws.htm.

For more information about the Commonwealth Council on Developmental Disabilities, visit http://www.kyccdd.com/.

Picnic full of fall fun

Organizing a community event was unknown territory for me, a little daunting but worth exploring. I knew one thing: I wanted to invite families who deal with special needs. Whole families. So that everyone would feel accepted and understood.

I also wanted to have an outside event, so I reserved a park shelter. The one good date available was just before Halloween, so pumpkins and costumes seemed a natural fit.

The result? Picnic in the Park with Pumpkins.

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I didn’t know how many people to expect. I hoped at least one person would come. About 50 people did.

Thanks to all the families who spent this past Sunday at South Fork Park in Florence. We enjoyed sunshine and a warm breeze. My grill master husband cooked up hot dogs and bratwursts. People set up chairs and blankets and gathered under the shelter to talk and eat.

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We talked about families, schools and concerns about health, medicine and resources. We played yard games, listened to my nephew rock his guitar and broke into a sing-a-long of “Shut Up and Dance with Me.” Superman, a pirate and various other characters were spotted on the playground and basketball courts. Families visited the park’s creek and walking trail.

The day was one of beauty, relationship and wholeness.

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A grant I received from the myNKY Nano Grant Program helped make this great day possible. A big thank you to the people at Skyward and The Center for Great Neighborhoods! They are all about creating community. If you want to know more, I wrote about the program in a previous post.

As one family was leaving the picnic, a man and I talked about how getting out of the house can be a challenge but how valuable the effort is. There was talk at some point in the day of this becoming an annual event.

As I continue on this blogging journey, that might be a road to explore.

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A story of thanks

As promised in yesterday’s post, Share your stories of thanks, here’s a column I wrote for The Kentucky Enquirer in 2013. Written, in part, to raise awareness about epilepsy, it needed a little editing to suit today’s purpose, but it still stands as a thank you letter to the community. Your story may look nothing like this, and that’s fine.  I offer it as an example only if you need one.

Please refer to yesterday’s post for guidelines to submit your stories of thanks. The deadline is Nov. 11. Contact me if you have any questions. I look forward to reading your stories!

A particularly good day

Epilepsy lives at our house. We’ve asked it to leave, begged even. But it is a stubborn, cold-hearted monster that makes life challenging, to say the least. So when a particularly good day happens upon us, I soak up the warmth for as long as I can.

A recent Saturday was a particularly good day.

I headed into a bustling Boone County weekend with my daughter, Anna, who has a severe epilepsy called Dravet syndrome and associated special needs. Often when I’m with her, we are movie characters caught in slow motion while everything around speeds past. She moves at her own pace, and I’ve learned, agonizingly, that no amount of rushing or pleading will change that.

Sometimes the slow pace is the residue of seizures. They occur mostly in her sleep these days, but in her early years they struck all over Northern Kentucky, dropping her to the floor or the ground at school, church, the bowling alley, restaurants, playgrounds, soccer fields, the library, swimming pools, dance class.

On that particularly good day, though, not a seizure was in sight.

Our first stop was the office of the Boone County Cooperative Extension. Here Four-H agent Christy Eastwood took time out of her morning to work with our St. Timothy Church group of families who have children with chronic physical, intellectual or behavioral challenges. The group gathers regularly to support each other and have fun, and on this Saturday Eastwood played games with us to teach about food groups, how germs spread and proper hand washing.

Then she showed us how to layer vanilla yogurt, granola and apple pie filling into a sweet and crunchy parfait. As she shared her knowledge, patience and enthusiasm, Eastwood gave us time to relax and enjoy each other.

The parfait didn’t fill Anna’s tummy, so next we scooted into a booth at a Burlington Pike restaurant for lunch with friends, including another girl with a type of epilepsy that slows life down.

Our attentive and kind-hearted waitress quickly realized that we sat apart from the lunchtime bustle swirling around us. She waited patiently while the girls decided on chicken nuggets and grilled cheese.

“Do you have any coupons?” she asked.

We did not. But she did. And she gave us two for the girls’ meals.

I still can see that waitress’s smile.

Next on this unusually busy day, Anna and I headed to Introduction to Martial Arts for Special Needs, a class offered through Boone County Parks & Recreation.

We walked into the echoing Maplewood gym in Burlington and met instructors from Tri-State ATA Martial Arts. Master Marge Templeton and instructor Chris Jones worked with Anna on kicks, punches and the use of nunchucks. They spoke gently, offering instruction, encouragement and praise, especially at the strength of her kicks. Anna was so proud of herself that she burst out laughing.

Yes, our recent Saturday was a particularly good day, a day warmed by the kindness of strangers. I wonder if the people we met that day have any idea that their patient acceptance of a child is a true gift to the child’s parents. I wonder if they realize how much gratitude grows from their simple acts. Maybe now, they do.

Share your stories of thanks

green-traffic-lightHave you ever been driving along and suddenly felt moved to offer up a special thank you?

Maybe it was a day when you were running late and somehow you hit all green lights along Dixie Highway. Maybe you were trying to turn left out of the bank to cross five lanes of US 42, and suddenly traffic cleared. Maybe that pothole that always jarred you on your way to school or work or the grocery finally got filled.

What about on your special needs journey? Have you ever felt a rush of gratitude when a day seemed easier to navigate, when opportunities were more accessible, when life – for an amazing moment – hummed along smoothly.

As Thanksgiving approaches, I invite you to share your encounters with gratitude as you’ve traveled the special needs road.

Maybe your gratitude was prompted by a person who made the journey less stressful, more enjoyable. Maybe it was a place or an organization that made all the difference. Maybe an event filled you with a rush of thankfulness.

A moment, a year, a stranger, a dear

You might write about a moment. You might write about a year. You might write about a passing stranger, a dear teacher, a doctor who wouldn’t give up. You might write about a random act of kindness or an achievement long fought for.

Whatever you write about, please follow these guidelines:

  • Tell a story with a Northern Kentucky connection.
  • Tell your story in 700 words or fewer.
  • Submit your story by Nov. 11, 2016.
  • Send your story in a Word document to angie.mimms@gmail.com.

Don’t stress about spelling and punctuation. Don’t worry about anything that might hold you back. Just tell your story from the heart.

I’ll select at least three stories to share on Special Needs Northern Kentucky in the days leading up to Thanksgiving. Several years ago, I wrote a column for The Kentucky Enquirer expressing thanks for a special day on our journey. I’ll share that tomorrow as an example of what such a story might look like.

I believe that when we focus on the good things in life, we create more good. When we focus on gratitude, we feel more grateful. My hope is that our stories can be a way to give back to our community – to honor the people, events and organizations that have helped us along the road. My hope, too, is that in sharing our stories, we lift readers up, remind them they aren’t alone, and provide hope for their journeys.

I look forward to reading your stories!

Join us for fall fun

Here’s the update I promised in an earlier post, Special Needs NKy awarded grant, about the community event that’s part of the myNKY Nano Grant program. I hope you can come out and enjoy the day!

Picnic in the Park with Pumpkins

Sunday, October 30, 2016

South Fork Park in Florence

2 p.m. to 5 p.m.

Families dealing with disability or special needs are invited to gather at the park shelter for food, treats, games and music. Enjoy a playground, walking trail, basketball and volleyball courts and lots of open space to play.

You are welcome to wear your Halloween costumes. Bring chairs or blankets if you’d like to spread out.

Please RSVP with the number in your family by Tuesday, Oct. 25, to angie.mimms@gmail.com.

Bean Bash cooks up fun, raises funds

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.

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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.

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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?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.

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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

Photos provided.

Ms. Wheelchair KY seeks entries

ms-wheelchair-kentuckyI 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.

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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.”

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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.