BCBDD Archive News
Special wish granted for a special boy
T-L Photo/ROBERT A. DEFRANK Rachel Johnson with son Grayson at St. Mary’s Community Center Tuesday as they visit the St. Clairsville Rotary Club.
By ROBERT A. DEFRANK
Times Leader Staff Writer
ST. CLAIRSVILLE — The generosity of area residents and businesses is helping grant a wish to a brave little boy.
Four-year-old Grayson Johnson of Freeport was at the St. Mary’s community center Tuesday with mother, Rachel, and older brother, Joseph. His father, Ken Johnson, was at work. The St. Clairsville Rotary Club made a donation to A Special Wish foundation to send the Johnson family to a beach vacation at Edisto Island in South Carolina Aug. 4 – 10. It will be Grayson’s first visit to the beach and his first vacation.
Rachel Johnson said the beach visit would be a welcome opportunity to rest and meet far-flung family members.
“He recently had open-heart surgery, four weeks ago,” she said. “He was granted a special wish and we chose to do a beach vacation. … We have family that live in South Carolina. We thought it’d be nice to visit family and relax as a family. … Just to be together as a family and rest and enjoy the serenity at the beach.”
Rachel Johnson said her son has been undergoing major surgery since his first six months of life. She said that Grayson was born with Down syndrome and three congenital heart defects, two holes in his heart, and other heart issues. Grayson was also born with Hirschprung disease, which affects the bowel.
“When he was born, he had 75 percent of his large intestine removed,” she said.
She said Grayson’s surgeries and other treatments took place at the Cleveland Clinic, meaning a great deal of travel and expense.
“Our lives are always so busy. Doctor’s appointments and the kids are busy and active,” she said.
“Since Grayson’s been born, we haven’t had the opportunity to have babysitters or people to watch him. My husband and I don’t get a lot of opportunities go go out together we haven’t had a vacation since Grayson was born. We’ve not been able to afford one or be able to go somewhere and just have help with him.”
“He’s very active,” she said. “Besides the medical expenses, he requires a lot of care. It’s more work than it is fun to go do stuff, so this special wish that’s being granted is a huge blessing. … An opportunity to be together and celebrate him getting past all this stuff.”
She said they will also visit Splash Zone, a water park on the island.
Rachel Johnson said they were referred to A Special Wish by Travis ‘the Terror’ Clark of St. Clairsville. The professional boxer has been working with Grayson on physical therapy and he has also helped A Special Wish in prior projects.
“We got close to Travis, and Travis really took a liking to Grayson. He called me one day after a Saturday session of personal training and let us know he wanted to nominate Grayson for a wish,” she said. “We’ve definitely been in contact with a few other families who have children going through similar surgeries and similar struggles, and that helps as a parent, knowing that someone else is going through the same thing and they understand.”
“I want to thank the Rotary Club and the Special Wish foundation. I think it’s incredible that people help and are so giving to strangers,” she said. “Hopefully we’ll be able to pass it forward to another family in the future.”
Alicia Freeman, executive director of A Special Wish, said one of her goals is to help their mission by establishing connections to the community.
“We’re grateful that Travis referred the family to us,” Freeman said. “Travis thought Grayson would be a perfect candidate for a wish and it worked out, and we’re very grateful and blessed that the St. Clairsville Rotary Club could donate and help sponsor this special wish for Grayson.”
Freeman said while the rotary club was the primary donor, some additional funding for the wish was still needed.
“I feel confident we will be able to fulfill the entire wish before they leave,” she said.
Freeman said the Rotary Club’s fundraising activities have benefited many in the community.
“We were very grateful we were on the club’s fundraising list,” she said. “They put a lot of work into raising those funds to donate back into the community.”
Doug McMullin, president of the St. Clairsville Rotary Club, said it was not his organization’s policy to release share the precise amount donated, but added they hold yearly fundraisers with the goal of making donations to worthy causes.
“Throughout the year we raise approximately $70,000 which we then just distribute throughout the community and internationally as well. We became aware of (A Special Wish) and it met all of our giving principles,” he said. “We were happy to help this family out…A Special Wish is the perfect candidate for us as a club to help. We’re able to give to them directly, they’re able to benefit from that directly, and I hope we’re able to do this again.”
Freeman also commended A Special Wish’s corporate partners, Belmont Savings Bank, Hoagy’s Heroes charity riders, Home Savings Bank, Harvey Goodman Realty.
“They are just wonderful to us,” she said.
“If anyone knows a child or a family that could use a wish, please reach out to use. We would love to help as many families as we can in the Ohio Valley,” she said.
For more information, to donate or to refer a child or family, call 740-449-2063 or visit www.spwishov.org.
Advocates Visit with State Rep
A number of self-advocates from Belmont County visited with State Rep. Don Jones (R-95th District) when they attended DD Awareness and Advocacy Day on March 5, 2019 in Columbus. These members of People First Belmont County Chapter discussed several issues with their legislator, including the need for more transportation options and more funding in the state budget for Direct Support Professionals,
who help people with daily living. Pictured with the legislator, from left: Pat Jobb of Martins Ferry, Greg Hocking, Fairview; Rep. Jones; Tommie Lindell of Barnesville, and Mary Lou Kent, advisor of People First.
Belmont DD Board Receives Three-Year Accreditation
The Belmont County Board of Developmental Disabilities has been accredited by the Ohio Department of Developmental Disabilities for the quality of services provided to county residents.
A six-member team from the state department completed a comprehensive review in November that included interviews with individuals and families who receive supports. A three-year accreditation was earned, the maximum possible term.
Superintendent Stephen Williams credited the successful review to the way the Board views what it does.
“Relationships are the foundation of quality supports and that is our focus in everything we do,” Williams said. “We recognize the uniqueness of every person and family served and that means we are better able to help them get what they want out of life.”
The Board coordinates supports for more than 500 eligible children and adults with developmental disabilities. Supports include early intervention (birth to age three), school-age assistance, transition from school to work (ages 14 to 22), job-related training and employment, residential, transportation, and respite.
BHN Superintendent Receives Leadership Award
Stephen L. Williams, Superintendent of the Belmont, Harrison and Noble County Boards of Developmental Disabilities, has received the 2018 Kenneth Legats Visionary Leadership Award from the Ohio Association of County Boards of Developmental Disabilities.
The award is presented annually to an executive who, over a career of more than 20 years, has shown high ideals, vision, and moral leadership in the administration of services for people with developmental disabilities.
Williams received the award at the OACB 35th annual convention in Columbus on November 30, 2018.
“I am humbled and grateful to be recognized in this way, but awards aren’t individual in nature,” Williams said. “I have a great team that strives to provide the best possible service to the people we support.”
In the nomination, Williams was described as “a thoughtful and passionate leader who is focused on building teams, enhancing relationships and ensuring success for the future. Through his humor, calm and focus, he brings out the best of those around him and always leads with an eye on the future and long-term success.”
Williams began his career with the Belmont County Board of DD in 1988 as a case manager, working in various leadership positions through the years until being named Superintendent of the Belmont, Harrison and Noble County Boards of Developmental Disabilities (BHN Alliance) in 2012. He is the only superintendent in Ohio who serves as superintendent of three county boards of developmental disabilities.
COUNTY BOARDS OF DEVELOPMENTAL DISABILITIES
County Boards of DD Mark 50 Years of Support
The Ohio Legislature created a unique and vital resource for people with developmental disabilities in 1967 and that resource continues to be a lifelong support 50 years later.
Always There 50 YearsOhio’s County Boards of Developmental Disabilities are celebrating their 50th Anniversary in 2017. The year-long theme - Always There - reflects the continuity of support, promotion of opportunity and history of partnership county boards have offered to the people they serve throughout the past, in the present and in the future.
Throughout the next year, the Belmont, Harrison and Noble County Boards of Developmental Disabilities (BHN Alliance) will be sharing stories of what people are achieving in their community.
“Our goal with any effort like this is to build awareness and understanding around what people with disabilities are achieving and how we are there to support their efforts,” said BHN Alliance Superintendent Stephen Williams.
County Boards are responsible for the coordination and funding of quality supports and services people need and this can begin at birth and continue throughout a person’s entire life. Supports funded or provided by the county boards include early intervention for infants and toddlers with developmental delays; transition services to help young adults successfully move from school to work; job-related skill training and employment for adults; and personal growth, residential and transportation services.
Williams noted that some people have intensive needs requiring constant care while others are more independent, living, working and contributing to their community with minimal supports from the County Board.
“We believe in the inherent right of all people to make their own decisions about what they want out of life,” Williams said. “Our mission then is to be there as a support as they seek what matters the most to them.”
The BHN Alliance is a partnership between the three county boards that share a person-centered approach to identifying, coordinating and delivering supports to more than 700 eligible children and adults in Belmont, Harrison and Noble counties.
Wellness initiative kicks off this fall
The Wellness Fund is a reimbursement grant designed to support the wellness goals of people with disabilities across Belmont, Harrison and Noble counties.
The fund operates as a grant. People choose what they would like to do, sign up and pay for the activity and then submit receipts/paid invoices to the County Board for reimbursement. It’s that simple.
The Wellness Fund provides reimbursement for activities like:
Fitness facilities / gyms / pools
Weight loss programs [Weight Watchers, Jenny Craig, etc.]
Healthy Cooking Classes
Smoking cessation programs
Registration fees for healthy walks/runs
Fitness classes like yoga, Zumba and others
Community team activities like softball, Pickleball, etc.
“The people we support are interested in healthy living and the Wellness Fund will provide a means for them to get active by joining community-based health and fitness activities,” said BHN Alliance Superintendent Stephen Williams.
If you are a person served by the Belmont, Harrison or Noble County Boards of Developmental Disabilities and would like to learn more, contact the Service and Support Department at 740-695-7433.