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At a cocktail party in late 2007, 30 parents were invited to Sue and Jeff Hall’s home in Hilton Head Plantation to hear an idea. All those in attendance had children with a variety of intellectual and developmental disabilities. All those in attendance were worried about what would happen to their children when they were no longer able to care for them. On that night they talked about their fears and they talked about the lives they hoped their children would have in their absence. From there, a plan started to take shape. What if we built our own community where our children could live happily and safely among their own friends? What if we were nearby to help them transition to a more independent life? And what if we did that right here in the Lowcountry? Eight years later and their dream is closer than it has ever been.
Many parents with children of special needs see their responsibility as something that has been bestowed upon them. This child is theirs for a reason
— a higher power made sure of that.
David Green first felt that in January 1983 when he steered his Chevy Citation onto Route 28 just outside Pittsburgh.
The roads were wet, and it was just after rush hour.
Green and his wife, Paula, were on their way to the children’s hospital where their nine-day-old son, Paul, had been transferred and where he was recovering from surgery to remove an obstruction in his intestine.
They had not seen their baby since the operation.
The couple pulled onto the busy expressway at a point known as the Mae West Bend, a hazardous curve where a number of crashes had occurred over the years. There they found themselves neck-and-neck with an 18-wheeler that was attempting to merge a short distance ahead.
Green had a choice: Speed his way to the front of the big-rig or get overtaken by the vehicular giant.
He tried his hardest to pass.
He almost made it.
The truck clipped the back of the Greens’ small car, and the couple were sent spinning across the highway and over the median.
The car came to a complete stop, amid oncoming traffic.
This is the end, they thought.
But it wasn’t.
Green, shaking and feeling the full brunt of adrenaline, turned to his wife and managed to get out a few unsteady words.
“God,” David told Paula, “must really want us to be this little boy’s parents.”
Paul, they would later discover, is autistic.
Over the years, they have faced many challenges that have prompted them to remember the message they received on that day 33 years ago.
But perhaps no challenge has been as serious as what’s to come.
The Greens, who now live in Bluffton, are on the younger end of a growing population of local parents and families who are in their 60s, 70s and 80s, but still car-pooling, still singing songs, still using silly voices to bring their adult children joy and still issuing regular reminders on how to act in this situation or that.
As both they and their children grow older, these parents are not only wondering who will take care of their adult children after they are no longer able to, but who will do so with the love, care, diligence and compassion they’ve given their children thus far.
Today there is no good answer for them.
Housing for the developmentally disabled is limited in South Carolina and considered inadequate by many of the parents, people who see their role as caregivers as a special responsibility given particularly to them.
It has taken determination, strength and patience to raise their children — kids who are deemed “different” and “other,” who face medical challenges, whose care requires endless waiting lists, complicated paperwork and slow-moving bureaucracies, and whose protection means always questioning whether the people in their lives are abusive or predatory.
It has taken hope, perseverance and a love that inhabits every cell of their being.
Should their parents die or become too ill to care for them, it is possible these special needs adults could be pulled from the lives they know and be sent to live elsewhere, whether with other relatives or among strangers in the first state- or county-run home that has an opening for them.
Wherever that may be.
To the Greens, the Halls and Susan Doubles, this was an unbearable thought and an unacceptable option.
In the fall of 2007, Jeff Hall turned to his wife, Sue, and said, “What if something happens to me? What would you do?”
Their close friend Skip Doubles had just died.
Skip and his wife, Susan, had a daughter, Ericha, who is developmentally disabled.
The idea of leaving his own family with special needs rudderless terrified Jeff.
The Halls had moved from Virginia to Hilton Head Island in 1997 so their son Jeremy, who is autistic, could attend Programs for Exceptional People.
They were used to assessing Jeremy’s needs and considering what would be best for him, but they had not yet talked about the worst.
They began to consider the options.
“No one would know his day-to-day life (if something happened to us),” Sue Hall, now 66, said. “No one would know him as well as we do.”
Jeremy, then in his 30s, had a good life on Hilton Head, and what made it that way were his friends and the programs that were available as well as having a job.
One option would be for him to live with his older brother in Virginia, who was married at the time and had a family of his own.
“I didn’t want to be a burden to my brother or nephew,” Jeremy said. “I don’t want to be a burden to anybody. That’s not a life.”
A group home would make the most sense, but there were none south of the Broad River at that time. With the housing market the way it was, it didn’t seem likely new ones would pop up in the near future.
Jeff Hall focused on what worked for his son and his son’s friends and came up with a concept for a neighborhood that was at first called Sand Hill.
That is when the Halls invited their friends, parents in the same boat as them, over for cocktails in late 2007.
We’ve got this idea, they told them. Talk centered around keeping their children protected, and their second hope was keeping kids connected to the community.
Everybody was enthusiastic about the idea of creating a neighborhood for their children.
But no one came to the second meeting.
“They agreed it needed to be done, but they didn’t want to do the work,” Sue said.
A few parents, including the Greens and Susan Doubles, continued to work on the idea, though.
They met at 9 a.m. every Wednesday at Atlanta Bread Company on Hilton Head to educate themselves on the in’s and out’s of taking on a project like this and to educate others on the issue.
Shortly thereafter, Jeff Hall died unexpectedly at age 61.
It was one year and one week to the day that he asked his wife, “What would you do?”
This is what she did — it’s what she had to do: Sue and Jeremy Hall packed a few suitcases and left town for a while. Living without Jeff in the home they had shared was too much for them at the time.
Both were sad, and Jeremy fell into a depression.
They traveled. They spent time with family. Sue paid to have an extension built onto her older son’s home where Jeremy could live just in case.
In their absence, Susan Doubles and the Greens forged ahead with the plans for a neighborhood, which would now include homes for retirees and families seeking a meaningful community experience.
When Sue Hall returned to Hilton Head about a year later, she rejoined them.
To this day, the original trio of families is deeply involved in making their dream a reality.
“Osprey is pretty much my life,” they’ve all said in different ways.
“I hope my child dies before I do.”
The thought is grim, but it’s not an uncommon one in the special needs community, according to Bill Love, executive director of Beaufort County Disabilities and Special Needs Department in Beaufort, who has tried to allay it in his work overseeing the county’s day service and residential programs.
“‘Nobody can take care of my child the way I can,’” he said of parents’ mind-sets. “It’s a real fear of theirs.”
Lisa Willingham, a single mother in Bluffton whose 26-year-old son Taylor Burch is legally blind, said there isn’t a day when the worst doesn’t occur to her.
“All the time I think about it. I could die tomorrow. I could get in a car wreck or find out I have cancer. He so depends on me,” she said. “He’s the love of my life, and I wouldn’t have it any other way.
“But he has nightmares about it too.”
Willingham, like many, wants the neighborhood built yesterday.
But, according to Osprey Village’s board president Jerry Manuel, a Hilton Head resident who has 40 years of experience running county and state departments of special needs, a project like Osprey can take up to 10 years to pull off.
In December, Osprey Village signed a contract to buy a 38-acre plot of land on Bluffton Parkway near Buckwalter Place.
The land is close to a grocery store, a bowling alley, the Bluffton Police Department headquarters and a number of restaurants.
The board plans to close on the purchase in May and is working to secure financing in the meantime. They have also applied to be certified as an official special needs service provider with the state of South Carolina.
“We’re close to having the place we want, the building we want, and people are telling us they want this,” Manuel said.
Susan Doubles is slowing down.
She is 76, though her bright personality and ability to connect with others make her seem much younger. She smiles a lot and says “sweetie” even more.
She doesn’t seem like a grandmother — which she is — but rather like a mom of a pre-teen, coordinating fundraisers, driving here and there, hosting sleepovers and dinner parties and reminding her daughter to pat down her ruffled hair.
It’s something that bugs Ericha, who is developmentally disabled.
“I’m not going to change, Mom,” she said after one request for a hair-pat.
Like her mother, Ericha is a social butterfly. She’s had small jobs here and there over the years. She attends day programs, is a cheerleader and works out three times a week at Reebok CrossFit on Hilton Head, which has classes specially designed for special needs adults.
She loves crafting and tracing pictures that she then colors in.
And she has a wide group of friends.
There are Sally and Lauren and Michelle and, of course, Jeremy.
Paul Green calls her every evening at 6:45 p.m. to find out what she ate for dinner and did she have dessert and what is she going to watch on television.
They also gossip.
“She’s my honey bun,” Paul said.
Susan Doubles has four other children and is used to commotion and packed schedules.
But she has been doing this for more than 50 years.
A friend once said to Susan, “Do you know how dysfunctional your life is?”
At the time, Susan was working and taking care of Ericha and Skip, who was quite ill with cancer.
“I said, ‘Really? I don’t think so.’ ”
It didn’t occur to her that other people’s lives weren’t spent in the total service of others.
These days, she’s feeling it though.
“I have to take naps in the afternoon sometimes,” she said. “Physically, I’ve hit a wall.”
She thinks Ericha will transition to Osprey Village just fine, but is worried about her own adjustment.
Susan has only ever known this life.
“I’ve never been alone,” she said, but she is looking forward to being able to visit her other kids and to being a grandmother to her grandkids. She would also like to cross off a few places on her travel bucket list.
The plan for Ericha has been that she’ll rotate among each of her siblings, who live in Florida, New York, Texas and on Hilton Head, when her mother can no longer care for her.
For Susan, this is Plan B.
“She’d never have a life,” she said. “You can’t establish a core group.”
Plan A is Osprey Village, where Susan can make sure Ericha is settled and among her own friends.
Susan imagines Osprey Village to be an idyllic place where neighbor looks out for neighbor, and where caregivers, retirees seeking purpose and families looking for community can live together.
“Oh,” she says excitedly, “we’ll have potlucks and barbecues. The kids can have movie nights.”
Sue and her son, Jeremy, are buddies.
They like to laugh, and they enjoy each other’s company.
But both know that a difficult transition is coming.
On some days Jeremy is more than OK with that.
“He fires me,” Sue laughs. “He’ll tell me I’m fired or tell me to go to my room. I’ll say ‘Fine. Can I get unemployment benefits, then?’ ”
For Sue, it’s important that Jeremy be set up with future arrangements sooner rather than later. She knows that their lives can change at any moment.
Seeing Jeremy settled in his new home would give her the peace of mind she’s sought for eight years.
On a recent Saturday she turned to Jeremy to hear his answer to the very question that’s haunted her. What would you do if something happened to your mom right now?
“I don’t know. I don’t know about that. I don’t know what I’d do.”
Osprey Village will be a community where adults with special needs can live independently alongside neighbors who take an interest in their lives and well-being.
Initially, six homes, a community center and trails will be built. The long-term plan includes more homes and 30 apartments. One-fourth of residents will have special needs. The other residents will include caregivers and relatives, retirees and families who are looking for a community that incorporates volunteer work.
State- and county-run group homes have long waiting lists. And the concept of intergenerational “intentional neighboring” to serve vulnerable communities is a fairly new one that has not yet been extended to adults with intellectual and developmental disabilities. Organizers hope the Osprey Village template will be replicable across the country.
Other ways it’s different: Organizers hope to make potential residents go through full background checks.
Osprey Village will be a beautiful place to live for people of all walks of life with a common bond that brings them together. There will be a special connection between residents as they share in the vision of a community that meets the needs of adults with developmental disabilities
Osprey Village will be designed from the ground up to encourage healthy interaction for all people. Structurally and symbolically, a front porch represents an invitation to engage with the neighborhood on a personal level. This “good old fashioned” neighborhood experience will help encourage neighbors to look out for neighbors, heart to heart and porch to porch.
At Osprey Village we want to maximize the potential for independence of those with disabilities. Conversely, it’s the interconnection of a united community that provides the greatest opportunity for inclusion and empowerment. Together we can move forward.
Join us in support of Osprey Village as we seek to lessen the effects of disability by connecting our abilities together and improving all of our lives in the process.