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down syndrome

Richard Hoey’s son Kevin lives in a Central Islip residential home, and he said its high time facilities like his son’s receives targeted testing. Photo from Hoey

Port Jefferson resident Richard Hoey’s son Kevin lives in a Central Islip residential home for the developmentally disabled. Kevin is diagnosed as intellectually disabled with Down syndrome, autism, behavioral disorders and is developmentally delayed. His mobility is confined to a wheelchair. Due to the ongoing coronavirus pandemic, 21-year-old Kevin has been largely confined to the facility. Family has only been able to communicate with their son via video chat, in which Hoey said Kevin’s attention span is “minimal.” 

“Kids in residential homes, they are all not able to protect themselves.”

— Richard Hoey

“Look to see him, he doesn’t recognize inside that little square TV screen,” Hoey said.

The issue, the parent said, is simply not knowing. Though he said the facility, Eaton Knolls, one run by United Cerebral Palsy of Long Island, has largely been communicative of current goings-on, two staff and one resident have tested positive for the virus. Though staff has been wearing personal protective equipment, they have been “low on the totem pole” in receiving masks and gloves.

“Kids in residential homes, they are all not able to protect themselves,” Hoey said. “They have no idea the dangers with sneezing, coughing or licking things. And they’ll never have any idea about it.”

The Port Jeff resident and his family have created a Change.org petition saying that Gov. Andrew Cuomo (D) should take similar action to Massachusetts and mandate testing at long-term care facilities, such as residential, veteran and nursing homes, for all staff and residents. 

The petition, change.org/p/andrew-m-cuomo-save-my-son-s-life-new-york-group-homes-need-mandatory-covid-19-testing, has already raised over 1,000 signatures since it started Friday, May 1.

The site is operated through the New York State Office for People with Developmental Disabilities, which sets the rules and regulations for facilities such as UCPLI. 

Camille Schramm, the director of development and public relations for UCPLI, said her company, which was mandated to close every service except for the residential homes since March 17, has struggled to get their hands on the necessary PPE. Through donations and requisitions they’ve managed to procure enough masks and gloves for now, but they have struggled to receive the necessary number of gowns.

Otherwise, facilities like hers “should be in the top 10” of long-term care organizations that need targeted testing. Residents cannot simply go to the local pharmacy to get tested, a plan the governor said is currently in the works. Many have major communication problems and mobility issues. Many are confined to wheelchairs.

UCP would not release the number of people at their 31 facilities who have tested positive for the virus, citing resident and family confidentiality, though she said they have fared better than others in the field.

“We’ve been hit, but not as hard as some of the other agencies on the Island due to the safety protocols and precautions we have in place,” Schramm said. 

Currently, the policy for staff who present symptoms isthat they are sent home for at least two weeks and they require a doctor’s note to be allowed back in. After learning of a positive case, UCPLI brought in a company to clean and sanitize the facility, which Schramm said is “costly, especially considering the number of homes we have.” 

For residents that start to show symptoms, they are self-isolated in their rooms. Though if they start to display problems with breathing, they are sent to hospitals where many remain because many also have compromised immunities. 

“They are part of an underserved demographic population that are very challenged by something like this,” Schramm said.

At the end of March, Massachusetts deployed National Guard technicians to long-term care facilities to attempt to test all workers and residents across the state, though things have only ramped up since then. After an April 27 $130,000 state funding plan, the National Guard has completed more than 28,000 tests at 525 care facilities in Massachusetts, according to The Boston Globe. Though the Bay State is ranked 10th in overall nursing home population, currently New York is ranked at the top with over 101,000 patients.

The OPWDD issued a statement saying testing is being prioritized for people receiving supports from OPWDD or service providers who display symptoms, adding that the state “continues to expand testing opportunities as new tests and locations become available.”

“OPWDD is taking the threat of COVID-19 to the people we support and the broader community very seriously and has activated our emergency response team to closely monitor all reports of possible contact within our system across the state,” the statement read. “All staff are fully trained on infection control practices and OPWDD has released guidance to staff and voluntary provider agencies regarding visitation, PPE use and quarantine protocols at our facilities. OPWDD monitors levels of PPE in all of our community residences, both state and provider operated, and has created a 24-hour emergency services number for providers and staff to contact when issues arise.” 

Residential facilities, mostly nursing homes of adult care facilities, have come under severe scrutiny since it was revealed a huge portion of COVID-19-related deaths have come from these places that house some of the most at-risk populations. As of May 5, New York State reported nearly 20 percent, or 4,813 deaths, in New York have come from these locations. Suffolk County has suffered 593, but many suspect COVID-19 deaths have gone unreported at these locations, and deaths may be even higher.

Hoey said targeted testing is the best way to stymie the growing number of deaths at these facilities.

“That will knock down the death rates,” he said. “The only reason [Cuomo is] not doing it because there’s no pressure for him to do this. “

By Melissa Arnold

Brittany Schiavone has a long list of things she loves to do, including acting, singing, dancing and riding horses. But these days, her biggest passion is giving back to others.

Schiavone, 30, is among more than 400,000 people in the United States living with Down syndrome. According to the Centers for Disease Control and Prevention, Down syndrome is a genetic disorder caused by an extra copy of chromosome 21. Down syndrome can lead to learning, muscular, cardiac and digestive problems, to name a few.

Today, one in every 600 babies in America is born with Down syndrome. Since 2016, Brittany has sent care packages to families around the country that welcome babies with Down syndrome to let them know they’re not alone. Her organization, Brittany’s Baskets of Hope (BBOH), has delivered more than 800 baskets to families in 49 states and Puerto Rico.

Brittany’s mother, Sue Schiavone, remembers struggling firsthand with the reality of Brittany’s diagnosis and uncertain future.

“Everything about my pregnancy and delivery with Brittany was typical,” said Sue, who lives in Huntington and also has an older son. “At the time, screening for Down’s wasn’t as advanced as it is today, so I didn’t have a diagnosis for Brittany prior to her birth. I knew something was wrong right away — she was adorable, but very floppy.”

Sue added that while she worked as a special education teacher, she had limited experience with Down syndrome at the time. “We learned pretty quickly that Brittany had Down’s, and it put us on a totally different road. I want to say we weren’t devastated, but we were. We took some time to come to terms with it, but ultimately we rallied and worked to help Brittany be the best person she could be.”

The Schiavone family became a part of the broad-reaching but tight-knit Down syndrome community, where Brittany was connected to early intervention therapies and other resources. As time went on, she blossomed into an outgoing, bright and happy girl who loved performing. Later on, as part of her own self-directed care program, Brittany went to work part-time at a clothing boutique. She liked the job, she said, but would soon be inspired to try something new.

“I was on a break at my job and I watched a video about people helping babies with Down’s. I wanted to do that,” Brittany said.

At home, Sue said Brittany became insistent about doing something to help families like theirs. “She just wouldn’t let the idea go.”

In 2014, Brittany founded BBOH as a 501(c)3 nonprofit organization. With help from talented family and friends, legal paperwork was filed and social media websites took shape — all with Brittany calling the shots.

Each care package is either personally delivered or mailed by Brittany and contains a hand-crocheted baby blanket, a Down Right Perfect onesie, some pampering products for new parents, Brittany’s story in her own words and educational material about Down syndrome.

 BBOH has exploded in popularity recently, primarily through word of mouth. Thanks to a nomination from family friend and BBOH team member Ashley Asti, Brittany was selected as one of 10 finalists in the L’Oreal Paris Women of Worth national competition. The internationally known makeup company, L’Oreal Paris, began the Women of Worth event to honor those who go above and beyond, selflessly volunteering their time to empower others. 

Asti got to know the Schiavone family when Brittany hired her to work on healthy eating and good nutrition. “Brittany was 25 at the time, and I really admired how driven she was,” Asti said. “How many people at 25 know their purpose and have the courage to live it so fully?” 

She eventually stopped working for Brittany, but the two remained close friends. Earlier this year, Asti saw an ad for Women of Worth while scrolling through her Facebook news feed. “I thought, ‘Wow, this is a big deal,’ and I really felt called to nominate Brittany. When I stopped to consider what a Woman of Worth should be, she immediately came to mind,” she said.

Brittany received a $10,000 prize for being chosen as a finalist and is now enjoying some time in the spotlight.

“I was so excited when I found out,” she said. “There were lots of interviews, and L’Oreal sent a camera crew. I wasn’t nervous about it; I just said, ‘Let’s do it!’ We got our makeup done, it was a lot of fun.”

Now, Brittany is looking for the community’s support to help her win the grand prize of $25,000 by voting for BBOH online now through Nov. 14. The winner will be announced on Dec. 4 at a star-studded gala in New York City.

All of the prize money will be used to benefit BBOH by covering the cost of care package materials and shipping, as well as the creation of a dedicated office space for BBOH in the Schiavone’s home. They are also working toward helping families outside of the U.S. receive baskets, which is in great demand but still too costly for the organization, Sue said.

“Brittany’s Baskets of Hope gives people that have babies with Down syndrome hope and joy, and it makes me really happy to help them,” Brittany said. “I want everyone to know that people with Down syndrome can do anything — really, really anything.”

To vote for Brittany, visit www.lorealparisusa.com/women-of-worth. To learn more about Brittany’s Baskets of Hope, donate to the cause or to request a care package, visit www.brittanysbasketsofhope.org.

Photos by Nilaya Sabnis

 

Cody Carey, on right, is biking cross-country with fraternity Pi Kappa Phi to spend time with people of all ages dealing with disabilities through dinners, dances, kickball games and more. Photo from Cody Carey

By Kevin Redding

Cody Carey wanted to do something a little more adventurous this summer than work double shifts at a local restaurant. So the Miller Place-bred junior accounting major at Ohio State University decided to strap on a helmet, hop on a blue Giant Defy road bike and push himself further than he ever thought possible.

Joined by 29 other members of the Pi Kappa Phi fraternity from all over the country, Carey, 21, is currently on a 67-day, 4,000-mile bike ride from Seattle, Washington, ending Aug. 12 in Washington, D.C., with scheduled stops along the way to spend time with people of all ages dealing with disabilities through dinners, dances and games.

Cody Carey meets disabled people on his cross-country Journey of Hope. Photo from Cody Carey

The Journey of Hope is an annual fundraising bike excursion hosted by the fraternity’s national philanthropy, The Ability Experience, since 1987 that raises funds and awareness for people with physical and mental disabilities — ranging quadriplegia to Down syndrome to autism.

“It’s incredible to see, especially with everything in the news about students today and this next generation,” The Ability Experience Chief Executive Officer Basil Lyberg said. “It’s very encouraging to understand the power that young people have to impact their communities and that they’re not just talking the talk, they’re out walking it. And in our case, riding across the country.”

Split among three teams of cyclists, each team takes on a different route that ultimately converges in D.C. Individual riders are required to raise $5,500 to contribute to an overall goal of $650,000, and Carey, the only Ohio State student on the ride this year, has already raised $5,799 through an online campaign.

He said members of the fraternity, which spans colleges and universities across the country, are encouraged to participate in the ambitious experience and he knew it was something he would regret not doing.

“I wanted to take myself out of my comfort zone and do something that’s essentially life-changing and that I’ll never forget,” Carey said. “This experience has definitely made helping people even more of a strong value of mine. Everybody should help anybody they can on a daily basis.”

Cody Carey finds some time to sightsee on his trek. Photo from Cody Carey

Since embarking June 6 on the Journey of Hope’s TransAmerica route, Carey and his fellow cyclists have pedaled through seven states, including Idaho, Montana, Wyoming and Colorado, hitting the road each day at 6 a.m. and wrapping up in the early afternoon. The riders generally sleep on gym floors and YMCA’s within the towns they visit, and travel an average of 75 miles per day. During a 12-hour bike rides, the athletes aren’t allowed to listen to music for safety reasons. Carey laughed about the long rides, and admitted there are parts of home he misses.

“How much I miss my bed,” he said. “There’s lot of chatting with the others, lots of silence, and lots of wind.”

He has ridden through sprawling peaks and snow-capped mountains in Montana, crossed over valleys in Jackson Hole, Wyoming, past cornfields in Kansas and said he has loved “taking in the big, beautiful country on two wheels.”

But for Carey, nothing compares to the experience of meeting locals from each state during the ride’s friendship visits. After a morning of pedaling, cyclists visit local groups supporting people with disabilities and take part in a long list of activities, from drawing with kids to playing wheelchair basketball and kickball to having lengthy conversations with teens and adults who face challenges every day.

“It’s been extremely heartwarming,” he said of the visits. “Many of the organizations say it’s like Christmas when we come by. We just make sure the adults and kids are having a great time. You don’t realize everything you have until realizing it can be taken away like with the people we’ve met that have suffered injuries, and with those who are disabled their whole life.”

Referring to the impact it has had on his fellow cyclists, he said, “I’ve never seen a group of guys cry as much as I do now.”

He recalled a special moment in Casper, Wyoming, when a man who recently suffered a brain tumor relayed a resonating message.

Cody Carey meets disabled people on his cross-country Journey of Hope. Photo from Cody Carey

“We were all about to get up and go play some games over in a park when he stood up and sat us all back down to tell us not to stress over the little things in life,” Carey said. “Because, he said, you can wake up one day and have something like what he experienced happen to you and your whole life could change. He told us to enjoy every second we have as we are, which was really touching coming from a guy now considered disabled. It kind of just pointed out all the stupid things we stress about in our regular lives.”

Preparation for the journey consisted of getting on a bike just a week and a half before heading to Seattle, Carey admitted, but being an athlete during his days in Miller Place provided him with much-needed mental stamina. He played soccer, which he competed in at a national level, and lacrosse, too.

“I’m so excited for him, he’s always been in terrific shape and he probably has thighs the size of tree trunks now,”Carey’s mother Elizabeth Hine joked. “I’m proud as heck of him. Between seeing the country and all the people, he says this is the best summer he’s ever had.”

Just two days into the cross-country ride, Carey said the group logged 125 miles over 24 hours while passing through Mount Rainier National Park in Washington state.

“Everyone on that route, except one person who suffered hypothermia, finished, and at the end of it we all looked at each other and said, ‘That’s the hardest thing we’ve ever done in our lives,’” Carey said. “We all say that our bike is our disability and we have to overcome it each day.”

John Cronin smiles with a pair of socks from John’s Crazy Socks. Photo from Mark Cronin

By Victoria Espinoza

For one father-son duo, the secret ingredient to success is socks. John Cronin, a 21-year-old Huntington resident diagnosed with Down syndrome, was trying to figure out what he wanted to do with his life after he graduated from Huntington High School, when John’s Crazy Socks was born.

The two-month-old business venture has already seen success, and Cronin and his dad Mark Cronin are continually coming up with new and unique ideas to set John’s Crazy Socks apart.

“We opened the store Dec. 9 and expected a trickle of sales,” Mark Cronin said in a phone interview. “Instead we were flooded with sales. It turns out John is a social media star.”

The co-founders shot and uploaded a variety of videos to the company’s Facebook page, starring the 21-year-old who has become the face of the business.

John and his father Mark Cronin smile. Photo from Mark Cronin

“Those first couple of videos we put up, which were spur of the moment, had 30,00 views,” the elder business partner said. “People were spreading them all around Huntington. So people flooded us and in fact on our first weekend we ran out of inventory.”

John’s Crazy Socks now ships nationally and internationally, and for local residents shipping may be the most enjoyable part of ordering from the company. Cronin hand-delivers local orders, which his dad said is an extra treat for customers.

“Word spread through social media that John would show up to a house to do a delivery, and whole families would come out to greet him and take photos,” he said.

Cronin said it’s one of his favorite parts of the business.

“I really like going to do home deliveries,” he said in a phone interview.

Aside from a friendly face with a new order of socks, patrons also receive a hand-written thank you note from Cronin as well as some Hershey kisses.

“We’ve learned a lot and saw there is a real opportunity here,” his father said. “We’re spreading happiness through socks, and it’s a way of connecting with people. The more people we can make happy the better off we will be.”

The team also gives customers two coupons with each purchase.

“We want to make it a great experience for people to buy from us,” Cronin’s father said.

John Cronin smiles with a customer during a home delivery. Photo from Mark Cronin

He said the duo has high hopes for John’s Crazy Socks, as they intend to become the world’s largest sock store, offering more sock styles and designs than anyone else. When the company started in December, they offered 31 different styles of socks. Today they offer more than 550 different styles.

It’s not just different colors and concepts customers can find at John’s Crazy Socks. They also sell socks with meaning behind them. Cronin designed an autism awareness and a Down syndrome awareness sock, as well as a breast cancer sock, and a Special Olympics sock. Cronin’s father said a portion of the proceeds from each specialized sock goes to national and local charity groups working towards finding a cure or to advocating for the groups, depending on the cause.

A blue whale sock was created for the Cold Spring Harbor Whaling Museum, and there are many other personalized socks to come.

For Cronin, socks represent self-expression.

“I really like socks,” he said. ‘They’re fun and they can fit your own personality.”

The elder Cronin said he’s enjoyed many aspects of starting the business with his son.

“I love bringing joy to people, the little things we get to do to just wow people,” he said. “We live in this increasingly complex world, and we can connect with people and say we hear you and we can make you happy, and that’s awesome. And it’s great to be able to do something with my son.”

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The news is in my blood. If you don’t believe me, check the name of the person who writes the column on the same page and who started this business 40 years ago — go Mom!

And yet there’s far too much blood in the news these days. It’s not enough that storms and natural disasters kill: People are murdering each other in stomach-churning numbers.

It’s heart-wrenching to read about the losses in our country and around the world. Far too often, headlines about senseless violence fill the news.

News organizations shouldn’t ignore these horrific acts, because we want to know what’s going on in the world, what we need to do to stay safe and what other people are doing and thinking.

It seems to me that there are things we can do. We can give blood. Why? We might save someone’s life, we might give someone a vital supply of something we can’t grow in a field, pull from a river or manufacture in a laboratory.

Recently, I met a woman who had been donating blood to her father for two years. He was sick and he needed blood on a regular basis. After he died, she continued to give blood. She said her father received blood from other people besides her during his illness, and she wanted to give back to a system that improved and extended his life.

Do we read about her? No, generally, we don’t, because it’s a small act of kindness and social awareness that doesn’t get politicians angry and doesn’t cause people to write messages to each other over the Internet. It’s not an opportunity to resort to name calling: It’s just a chance to save lives.

We can also volunteer to make our communities better places. We can be a big brother or big sister, or we can find a charitable organization that provides caring and support for families that have children with special needs. My Aunt Maxine had Down syndrome and gave so much more than she ever took.

Sure, she dominated the airwaves with her husky voice and, yes, she sometimes said and did things that made us roll our eyes, but, more often than not, she displayed the kind of unreserved love and affection that jaded and vulnerable adults find difficult to display. When Maxine laughed or did something extraordinarily funny, like sharing a malapropism, she laughed so hard that she cried. Nowadays, after she died, we find ourselves sharing tears of joy when we think of how much she contributed to our lives and to the room.

When the big things seem to be going in the wrong direction, we the people can commit random acts of kindness. Yes, we can and should pray for each other. It certainly can’t hurt, regardless of whether we’re Christian, Jewish, Muslim or any other religion.

We can also take the kind of actions that define who we are and that show our character. We are living in a world after the Brexit vote and after the failed coup attempt in Turkey. We may not know what to make of all that, but we can decide who we want to be.

We can’t stand on a platform, the way all the former Miss America contestants of bygone days used to, and wish for “world peace,” because that seems naive. And, yet, we can hope that small acts, committed in the name of counterbalancing all the negative news, echoed and amplified across the nation, can turn the tone.

We are fortunate enough to live in a place where we can shape the world in a way we’d like it to be, one community and one random act of kindness at a time.