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 firstname.lastname@example.org.
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.
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.
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.
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 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.”
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 email@example.com. 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.
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:
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.