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Changing Perceptions of Disability, One Latte at a Time

April 10, 2018

Kennesaw Georgia’s New Independent Grounds Cafe

 

Independent Grounds Cafe Champions People with Special Needs

Story and Photographs by Robin Rayne/ZUMA Press

©2018 All Rights Reserved

Kennesaw, GA — Gretchen Fuchs greeted her customer at the Independent Grounds Cafe with an engaging smile that lit up the room.

“Welcome! How may I serve you?” she asked.As the petite barista steamed the milk for her customer’s order, owner Lorna Heid leaned against a gleaming espresso machine and watched with pride, convinced her café can change the way people view those with developmental disabilities — one latte at a time. The 48-year-old single Kennesaw mom employs a mix of baristas and cashiers, several of whom are, in her words, “differently-abled” because of intellectual or developmental challenges. A few employees experience autism. Several more have Down syndrome, cerebral palsy or other challenges. Heid also hired a few staffers without a disability.
Independent Grounds Cafe Champions People with Special Needs

“We all have something, don’t we? We’re all special in our own way,” Heid said, her eyes twinkling.

She calls it the ‘coffee shop with heart’ and wants to help customers better understand the world of those living with special needs, as well as provide rewarding and fun jobs for her staff.

Heid’s 17-year-old daughter, Emma, is one of the café’s servers. She has a developmental disability and was the inspiration behind the café venture.

Independent Grounds Cafe Champions People with Special Needs

Emma Heid chats with a customer at the cafe

“I wanted to create a place where Emma can work and love it,” she said. Her daughter, now a sophomore at Kennesaw Mountain High School, contracted meningitis as a baby that caused brain damage and developmental delays, challenges she has worked to overcome. 

“As a parent you spend years dreaming about what your child can accomplish, but as a parent of a special needs child you often find yourself tempering those dreams. I wanted to show the community what Emma and all her peers can truly accomplish.” 

Heid briefly considered purchasing a fast food franchise so her daughter would always have a place to work, but was discouraged by the required investment and previous business experience.“About the same time, I saw a video about this woman who has two children with Down syndrome in North Carolina. She opened a coffee shop and hired servers with disabilities. I thought that was something I could do,” she said. Heid said she knew she would have support from the special needs community, especially here in Georgia. 

“Emma’s been in gymnastics since she was two years old and doing the Special Olympics. I knew the girls and young women she did gymnastics with would make great employees. I knew some of her fellow students at Kennesaw Mountain High School would make great employees. Their personalities would shine in a place like this,” she said.

Heid said her biggest problem was navigating the licensing requirements to open her business.  “A lot of hoops to jump though,” she said.

She remembered an older house in Kennesaw’s Legacy Park that had once been an ice cream shop.“Emma had her second birthday party here. It had been vacant for nearly four years when Emma and I stopped to see it. We visited just as a maintenance fellow was finishing up some work. I said, ‘I want this place,’” she said.

Heid left her insurance defense paralegal career in December. She leased the house off Jiles Road, completed her business plan, secured the state license, hired the café’s employees and learned everything she could about the art of making coffee. The café opened in early March.

 AN AUTHENTIC COFFEE EXPERERIENCE

 “I had to do a lot of research about the best espresso machines. They are very complicated and expensive, but I wanted it to be an authentic coffee experience for our customers. I didn’t want my employees to just press a button and a drink comes out. I told them ‘this is a real coffee shop and you are doing a real job. We are training you to have real skills.’ They have to know how many shots of espresso go into each drink, what flavors to add, the difference between a latte and a cappuccino, all these things,” Heid said. 

Independent Grounds Cafe Champions People with Special Needs

Gretchen Fuchs at the barista bar

The café’s machine is identical to those used throughout Europe, she said. The coffee beans come from a supplier in Smyrna who imports unroasted beans from several countries. 

“He knows his beans are ‘fair trade’ and of excellent quality,” she said. “He blends them and roasts them at his shop. The machine we have steams the milk perfectly and pulls the espresso shots. It allows our staff to make the drinks on their own, be creative, and serve a really good coffee.”

The menu consists of a variety of coffee and espresso-based drinks as well as pastries. The café provides free Wi-Fi and sells t-shirts and travel mugs as well as its own private blend of coffee beans. There are a variety of smaller rooms available for quiet conversations, study, work or just a place to read a book while enjoying their brew, with the subtle aroma of freshly ground coffee beans filling the house. The staff is cheerful and playful, clearly loving their jobs, their coworkers and their customers.

“Every employee brings something fresh to the team,” Heid said. “I have each employee try all the different jobs to see what they like best.”

Independent Grounds Cafe Champions People with Special Needs

When Meaghan Brox, 30, applied for a job, she hoped for work that was more challenging than wiping tables at a fast food franchise. “I didn’t like my job anymore. It didn’t challenge me. I worked there for 11 years,” Brox said.

Heid said she knew Brox was capable of more. 

 “She loves her job here. She’s so excited that she gets to greet her customers make drinks for them, and she keeps track of every drink she creates,” Heid said. 

Parents of special needs children must constantly make adjustments to their lives, Heid said. 

“When Emma was a baby, I went to mom groups, taking her to physical therapy, occupational therapy and speech therapy. We weren’t just doing play dates, we had doctor appointments and specialists.”

Once her daughter was in kindergarten, Heid realized life would take a path far different from what she envisioned. Independent Grounds Cafe Champions People with Special Needs

Lorna Heid, center, with a few of her valued staff

“As inclusive as the schools try to be, there’s only so much they can do,” she said. “As they get older you think about what they are going to do in life — how will they perform into society, will they be independent, or will they live with me?” Heid said. “Emma loves little kids and they love her. She’s like a ‘little kid whisperer.’ I always thought she could work in a day care place. But the day care would need to accept Emma’s limitations, and understand there were things she could do but there were things she couldn’t do or recognize.”“This café is a place where Emma can really take it and make it her own. The beans are even named after her — a private label from our supplier called ‘Emma’s Brew.’Independent Grounds Cafe Champions People with Special Needs

Meaghan Brox and Gretchen Fuchs prepare customers’ coffee orders

Independent Grounds Cafe Champions People with Special Needs

 GIVING HOPE

 Customer Nicolette Elommal lives near the café.  “As the mother of a special needs child, this café gives me hope,” Elommal said.  “It’s warm and cozy and welcoming, but what I love most is what it represents. My son is on the Autism spectrum and he’s pretty severe, but I’m hopeful for my son’s future.”

Heid is willing to share her café’s business plan with parents of special needs children in other communities so their children will always have a place to work.  “It could serve as a model,” she said.Heid’s younger daughter Katelyn, soon-to-be 15, looks forward to working at the café with her sister over the summer. “Siblings of special needs children sacrifice a lot, just as the parents do. I wanted to do this for both my children as well as for myself,” Heid said. “I wanted to show them that woman can do just about anything.”

Heid hopes other business owners will consider hiring more employees with disabilities. 

“It won’t affect their business negatively. It will only enhance their business, maybe even give them an edge,” allowing people with disabilities to become part of their communities, she said. As her business grows, Heid said the café’s hours will likely expand into evening hours. “I’ll need to hire more staff. I’ll need college students too. We’re all about inclusivity here, and we’re all a team.”

Independent Grounds Cafe Champions People with Special Needs

Emma Heid proudly displays the coffee blend named after her, ‘Emma’s Brew.’

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Erika’s Long Road Back

March 18, 2018

Erika's Journey Home: The slow road to recovery from a brain tumor

Story and Photos © Robin Rayne Nelson/ZUMA Press

Erika Jones’ hand trembled as she gripped the pen to write a “K” on a sheet of paper taped to a table. Her attempt was slow but determined. “You’re doing it, Erika, keep doing it! Trace that K!” therapist Celeste Whirt cheered.

 Jones was relearning how to write her name at the age of 32. It was a small step on a long road to recovery from surgery that removed a brain tumor five months ago. 

 Jones was discharged from Shepherd Spinal Center in Atlanta in late January after several months of intensive physical therapy. She returned to live with her parents in Marietta and is now totally dependent on them for her care.

Joyce and John Jones continue to adjust to their new reality of caring for their brain-injured daughter. They are retired and living on fixed Social Security Disability incomes. Both have serious health issues of their own.

Erika's Journey Home: The slow road to recovery from a brain tumor

Joyce Jones, 64,  was an executive recruiter before a colon cancer diagnosis forced to leave her career in 2004. John Jones, 77, is a former bus driver for Cobb County Schools and former business owner.  They relocated to Georgia from Michigan in 1994 and attend Transfiguration Catholic Church in Marietta.  Erika Jones is a 2003 graduate of Lassiter high School and attended Middle Georgia College and Chattahoochee Technical College.  Prior to her illness she worked in marketing and media production in Norcross. She is the Jones’ only child together.

Erika's Journey Home: The slow road to recovery from a brain tumor

“Our lives were turned upside down,” Joyce Jones reflected.  “But I am committed to caring for my baby until the day I die.” “Her doctors called it a meningioma,” she explained.  “It was on the front part of her brain and around her spinal cord. They said it had been growing for at least ten years and had actually squeezed and moved her brain over. They were surprised she didn’t have headaches and vision problems earlier.”

The surgery left Erika Jones paralyzed on her right side and unable to walk. “Her speech is mostly babbling. She’s unintelligible except for a few words. She can say ‘Hi’ and ‘I love you,’ and she can nod her head to communicate ‘yes’ or ‘no.’ Her comprehension of what we’re saying wasn’t very good a few months ago, but she understands more now,” Joyce Jones said.

Erika's Journey Home: The slow road to recovery from a brain tumorErika Jones smiles and bops her head when she hears her favorite music. That gives her mother hope in the midst of uncertainty and fatigue from caring for both daughter and husband.  Their former sunshine-drenched dining room in now a bedroom for their daughter. It is large enough to accommodate a hospital-style bed and an electric lift that helps Joyce Jones move her daughter from bed to wheelchair and back several times a day. 

A large television was installed near her bed so Erika Jones has something to watch during the day. Speech and physical therapists visit several times each week to work with Erika Jones, who spends most of her day in her wheelchair or a recliner chair in the family room. 

Erika's Journey Home: The slow road to recovery from a brain tumorShe’s always strapped into her chairs to keep her from falling if she dozes off, “ Joyce Jones explained. She sponge-bathes her daughter, feeds her and routinely changes her diapers. She spends hours every day doing range-of-motion and other strengthening exercises Erika Jones’ therapists showed her. She is on constant lookout for bedsores and skin irritations. 

“I sleep at night on the sofa nearby so I can hear Erika if she moves, but I don’t sleep much,” she said. “Our bedrooms are actually on the second floor but it’s impossible to navigate with a wheelchair,” she explained. “John 

sleeps upstairs. He relies on oxygen because of his emphysema and doesn’t have much strength.” 

 “Our dining room was carpeted before Erika came back to live here. A friend bought sheets of thick plywood and screwed them down over the carpet so we would have a hard surface for Erika’s heavy bed, her wheelchair and the lift. That made it much easier to move things around,” she said.

Erika's Journey Home: The slow road to recovery from a brain tumor

A relative purchased a new multiple-position hospital-style bed and had it shipped from California for Erika Jones’ bedroom. Shepherd Spinal Center staff contributed the electric lift. One friend donated a large supply cabinet where Erika’s Jones’ extra diapers and bed pads are stored. Another friend installed colorful curtains in the doorway to provide privacy. A team of neighbors takes turns in supplying meals every few days to the Jones home. “We have such kind and loving neighbors. They’ve been bringing meals ever since this happened so I could just focus on caring for Erika,” Joyce Jones continued. 

“I couldn’t bear the idea of Erika living in a nursing home. She’s our daughter and we will do everything we can to help her get better right here. She wouldn’t get that love in a nursing home,” Joyce Jones said, wiping a tear. Erika Jones has had a number of visitors since her return to her parents’ home, including friends from her AAU basketball team who learned of her situation from a Marietta Daily Journal story in January. “She lights up when she sees her old friends,” she said.

Erika's Journey Home: The slow road to recovery from a brain tumor

Speech and language pathologist Whirt visits Erika Jones several hours each week for therapy that helps her relearn to speak. She guided Erika Jones’ hands to write her name on a recent session, encouraging her to push through the struggle as she helped her express herself verbally.

“She really wants to do things for herself. To Erika, the sounds she makes are words.  Erika has aphasia from injury to the part of the brain that controls speech.  She  knows what she wants to say but the words can’t get out. They are garbled. I’m certain that becomes very frustrating for her,” Whirt said.

“Our brains have this amazing ability to regenerate, especially at Erika’s young age. I work with Erika to help her find the right words. She can continue to improve for many years and nobody really knows how far she can go. 

I think one of the best things to help Erika is more visits from her friends. I’m sure she gets lonely,” Whirt said.

She expressed her concern for Erika’s Jones’ mother as well. “Just being able to leave the house for an hour or two with a friend while someone watches Erika is a big help.” 

Erika's Journey Home: The slow road to recovery from a brain tumorJoyce Jones admitted the constant caring for her daughter has chipped away at her own health.

“I know I’ve lost some weight. My friends are worried. I know I need help to care for her. Even using the Hoyer lift, it hurts my back to move her. We hope to have a home health nurse come several hours a day soon. We still hope to remodel the main floor bathroom, adding a shower that can accommodate her wheelchair. Until then, I’ll keep giving her sponge baths in her room,” Joyce Jones said.

After Erika Jones’ story was published in a local newspaper, readers contributed nearly $13,000 to a GoFundMe account to help with her expenses. Joyce Jones and her husband will use those funds toward a used van, modified to accommodate a wheelchair. 

“John hopes to sell our car and Erika’s car so we have enough for the van,” Joyce Jones said. “Erika’s therapists come to our home for now, but we’ll need to drive her to daily outpatient physical therapy in Decatur a few months when the home visits end. We’ll need to take Erika for doctor visits too.” “I can’t predict the future. Her doctors are very good but they can’t predict how she will do either. We just take it one day at a time,” she said.

Friends set up a GoFundMe site to help the family with Erika’s care expenses.  https://www.gofundme.com/%20%20erika-strong

Erika's Journey Home: The slow road to recovery from a brain tumor

 

‘ Our lives turned upside down’ as brain tumor emerges in a young woman

February 26, 2018

Brain tumor turns family's lives 'upside down'Joyce Jones give kiss of encouragement to daughter Erika before a physical therapy session.

Story and Photographs © Robin Rayne Nelson/ZUMA Press All Rights Reserved

Tears welled in Joyce Jones’ eyes as she watched Shepherd Spinal Center therapists help her daughter Erika Jones stand for the first time in months.

“This is a milestone,” Joyce Jones said, struggling to keep her emotions at bay. 

Her daughter was recovering from surgery four months earlier to remove a massive tumor that left her with brain damage, paralyzed on her right side and unable to walk or speak more than a few words.

“Our lives turned upside down this past October. Erika is my only child. She’s 32 and was in perfect health — or so we thought,” said Joyce Jones, who lives near Lassiter High School with her husband John Jones.

Their daughter was on the way home from work when the seizure occurred. She managed to drive to a Dunkin’ Donuts parking lot before slumping over on the wheel. A customer saw her and called 911, she said.

Paramedics broke into her car and rushed the 2003 Lassiter High School graduate to Northside Hospital where tests revealed a massive brain tumor that was nearly the size of a softball.

“Her doctors called it a meningioma. It was on the front part of her brain and around her spinal cord. They said it had been growing for at least ten years and had actually squeezed and moved her brain over. They were surprised she didn’t have headaches and vision problems earlier,” Joyce Jones explained.

“It took the surgical team ten hours to remove it,” she said. “Swelling on her brain forced the surgeons to do a second operation the next day. She had five more in the weeks after that. Now she has a shunt in her brain for the excess fluids, a G-tube in her abdomen to help with feeding and a tracheostomy so she can breathe. “

Erika lived with a roommate for several years but returned home last year while she looked for a place of her own. “She was just about to move into an apartment and live on her own when this all happened,” Joyce Jones explained.

“She had her new furniture purchased. It was going to be that next weekend. But that’s all changed now.”

Erika Jones was transferred to Shepherd Spinal Center in November. She remainsparalyzed on her right side and is unable to walk. Though she has significant cognitive deficits, she manages to say a few words. “She can say ‘Hi’ and ‘God’ and ‘I love you,’ and she still smiles. The Erika I knew is coming back,” her mother said. “I can see that feistiness. She is a fighter.”

Brain tumor turns family's lives 'upside down'

Erika Jones has physical, occupational and speech therapy five hours a day, six days a week. She wears a foam helmet to protect her head and awaits another operation in a few weeks to replace bone in an exposed area on her skull.

Her mother spends hours every afternoon at her daughter’s hospital bedside before returning to her family’s Marietta home. On this day, she had good news to share with her husband John Jones, retired bus driver for Cobb County schools whom students and friends called “JJ.” “I knew this was not going to be a walk in the park,” Joyce Jones continued. “But thinking back to when Erika was being wheeled into the operating room, she wasn’t fearful.

She never cried. She said she knew it was all in God’s hands and he would lead the surgeons. Today the therapists got her in a standing frame and raised it up so she could stand up and lean on the tray. I know it was hard for her but she’s doing it.”

Brain tumor turns family's lives 'upside down'

That her daughter was awake and smiling was in itself an answer to prayer, she said. “Before they removed the tumor doctors said she could have a stroke during the surgery. I remember praying, ‘Dear God, please let her wake up and be able to do some things. I don’t want her in a nursing home.”

Joyce Jones and her husband are hopeful their daughter can be released from Shepherd Center at the end of January and return home.

What comes next has them both intensely anxious.

“Her doctors said recovery will be a slow process and they said I’ll need to be patient. We’ll need to adjust to our ‘new normal,’ but JJ and I really have no idea what that will be like,” she added. “Her doctors can’t say if she will ever walk or drive again. It may take years.”

“Erika’s brain injury was devastating and tragic,” explained Dr. Anna Elmers, M.D., a physical medicine and rehabilitation specialist at Shepherd Center who supervises Erika’s therapy. “She will be dependent and need 24-hour care, seven days a week for the foreseeable future. It will be quite expensive.”

“Erika will need help in all parts of her day, including feeding, bathing and dressing,” according to Ali Harris, Erika’s primary physical therapist at Shepherd Center. “She has what is known as ‘global aphasia.’ She doesn’t always comprehend what people are saying to her and she’s not able to express herself verbally,” she added. She may be able to walk again in time, she added.

The bedrooms in the Jones’ two-story home are on the second level. They hope to convert their first-floor dining room into a bedroom for their daughter, but need plumbing and carpentry help in expanding a first-floor bathroom to accommodate her wheelchair.

“I lay awake at night worrying if Erika will recognize this is her home. We’re going to make this a comfortable place for her. We considered selling and relocating to a single-level house but we didn’t want to leave our friends in this neighborhood.

Many have offered their help in caring for Erika,” Joyce Jones explained. “We will need their help.”

Erika Jones’ health insurance from her job as a music production assistant will cover the costs of a hospital bed and portable hydraulic lift for a while, she said. Jones hopes to arrange for Social Security disability and Medicare coverage in the coming days.

“I’m 64 years old. John is 77 and recovering from back surgery. He’s weak from emphysema and diabetes and he’s on oxygen. Erika weighs 190 pounds and I don’t think we are strong enough to lift her in and out of her bed and wheelchair, even with the lift,” she said.

A skilled care facility is not an option, she emphasized. “Our daughter needs to be home where she can get the love and care she needs. We have a few weeks to get ready before she comes home. A neighbor, a niece and one of Erika’s close friends have volunteered to help care for her.”

The couple worries about finances, as they are on a limited, fixed income. 

“We’ll need money for diapers and pads for Erika and a lot of things Medicare won’t cover. I’m not sure how we’re going to meet those expenses,” Joyce Jones explained. Her daughter will need a wheelchair-accessible van for trips to doctors and physical therapy that will continue in Decatur for the foreseeable future, she explained. Insurance will not provide transportation, and the type of van Erika requires cost at least $30,000, she said.

Brain tumor turns family's lives 'upside down'

“This is a life changing event that nobody planned and they definitely didn’t budget for in life,” explained Nancy Hornsby, a family friend who arranged a Go Fund Me account to help with Erika’s support expenses once she returns home. She hopes to raise at least $70,000. “Erika had a full time job and paid her own bills. Now her parents are trying to make sure her outstanding bills are paid as well as take care of their own obligations. Joyce and JJ are unemployed and living off retirement income,” she said.

“There is a long road ahead for all of us involved with Erika, probably much longer than any of us choose to realize,” Hornsby said.

What may help Erika Jones recover as much as anything costs nothing. “She used to play ball for the AAU, the Amateur Athletic Union,” Joyce Jones recalled. “It would be good if some of the girls she played with could come to visit her once she’s home. I know that would bring a smile to her face and help her heal.”

As another physical therapist worked with Erika on an electrical stimulation cycle designed to restore function to her stiff right leg, Joyce Jones collected her coat and bag. The day’s therapy was nearly done and her daughter would soon be transported back to her hospital room with her mother close behind.

“Erika and I were the best of friends, like partners in crime. She used to call me15 times a day, and there were times I kidded her about that. ‘You just called me an hour ago,’ I remember saying to her,” Joyce Jones recalled.

“But now I wish with all my heart she could pick up the phone and call me.”

Forced to Wear the Yellow Star: A Holocaust Survivor Remembers the Horror

February 26, 2018

Robert Ratonyi, Holocaust Survivor

ROBERT RATONYI, 80, was a 6-year-old boy in Budapest, Hungary in 1944 during World War 2

 

Story and Photographs ©Robin Rayne Nelson/ZUMA Press All Rights Reserved

Kennesaw, Georgia — Robert Ratonyi can still see the piles of watches and wedding rings at the entrance to the ‘Big Ghetto.’ 

He remembers the fear that gripped him as he watched armed Hungarian soldiers — sympathizers of Nazi Germany — bark orders to hundreds of Jewish women and children around him on a cold October night. 

It was 1944, in war-ravaged Hungary. German troops had invaded the country to continue with their mission to deport – and ultimately exterminate — millions of European Jews. 

Ratonyi, now 80, is one of an ever-dwindling number of Holocaust survivors. He shared his tale of horror and survival with a standing-room-only crowd at Mt. Paran Christian School Tuesday night. Ratonyi was six years old that year. His father had been shipped off to a labor camp two years before. He and his mother had been rousted from their Budapest flat in a “Yellow Star House” for Jewish families at 3 a.m. by local police. They were lined up with hundreds of other Jews and escorted to the entrance of a fenced resettlement community in the town’s old Jewish quarter, he said. 

“One by one, each person was ordered to leave their money and valuables in a pile on the sidewalk as they passed through the narrow gate. I will never forget that,” Ratonyi continued. 

Robert Ratonyi, Holocaust Survivor

He shared how he held tight to his mother’s hand. Once he and his mother passed through the gate, armed Hungarian soldiers pulled them apart and shoved his mother into a line with hundreds of other women. 

“She turned back to me, crying as they led her away. She couldn’t speak. She just cried. The children, we were all crying,” as our mothers were led away, he said. 

His mother was forced to march with thousands of other Jewish women to a labor camp more than 120 miles away, across the border in Austria. Nearly 4 of every 10 women died along the way. Recalling that vivid scene in his mind brought him to the edge of tears. 

“This is not a pleasant thing to talk about. Every time I do I’m transported back to that time,” he said. “It’s not an easy thing to do, but I do it because I have an obligation. When you hear a first-hand account it gives a different perspective from what is often taught in the schools.” 

Ratonyi was born in 1938, “the year of Kristallnacht, the German name for ‘Night of the Broken Glass,’” he said. “It was two days of riots in Vienna and Berlin. More than a hundred Jews were killed, 30,000 Jews deported, 1,000 synagogues destroyed and 30,000 Jewish businesses destroyed,” he told the Mount Paran audience. 

By 1944, most Hungarian Jews knew what was going on with Jews in other countries, he said. They learned of mass numbers of Jews in Germany, Poland, Czechoslovakia and Austria who were stuffed into rail cars and delivered to concentration camps throughout German-occupied countries. 

“They knew what was coming,” he said. 

Every Jew six years and older was required to wear a yellow star-shaped patch on their outer garments, he said. Though his mother dutifully sewed stars on his jacket and hers that marked them as Jews, he was too young to grasp the significance of the symbol. 

“The only thing I knew about being Jewish was that we celebrated Jewish holidays at my grandparents’ place. Neighbors, kids I played with, they celebrated Christmas. That’s how naïve I was,” he said. “People in Budapest hoped the war would end before German troops invaded and occupied Hungary, but those dreams were crushed,” he said. As German troops took control of Budapest, Ratonyi said he “quickly lost his innocence. I learned being Jewish had consequences,” he told the crowd. 

He shared his tale of survival as Allied Forces bombed the town. “There were American bombers by day and British bombers by night,” he recalled. He took shelter in a cellar with his mother during the bombing raids. “I learned the whistling of the bombs and the blasts that followed early on,” he said.

 Ratonyi described how his mother pleaded with a local Protestant pastor to convert him to Christianity. She begged the pastor to provide documents that proved he was not a Jew. 

“But the answer was no. There were strict laws against that,” he said.

He told of his heroes, including his mother’s friend who found him alone and frightened in the ghetto and managed to deliver him to his grandparents. It was a small flat that eventually became a refuge for aunts and cousins as the German occupation continued, he said. 

One relative was able to secure papers that kept them safe for a while. His cousin scoured bombed-out buildings at night for items that could be bartered for food. Ratonyi told of surviving on one small can of soup per day, of bomb-ravaged buildings and blown out windows, of sleeping next to others for warmth in a bitterly cold winter, and how his extended family moved from one flat to another and then another just to stay alive as 1944 turned to 1945. 

He described how hundreds of Jews were rounded up by German soldiers, marched to a place near the Danube River and executed, their bodies falling into the water – and how his cousin saved his family from a similar fate.

“Miklos, my cousin, was very bold. His job was to find anything of value in the ruins that could be exchanged for food. One day he noticed a crumpled piece of cloth in a stairwell. It was an armband, just like the ones used by the Arrow Cross party, the facist militia who were Nazi sympathizers. Miklos stuffed it in his pocket,” Ratonyi said.

Later that day as his cousin return to the ghetto, he came across several dozen Jews held at gunpoint in the courtyard. Ratonyi was among them. 

“There were three members of the Arrow Cross militia holding us, two young men and an older man with guns.  It was a shakedown for anything of value the soldiers could use to barter for food. It was near the end of the war and they were desperate,” he said. “It happened a lot. Those who had nothing to give were usually taken to the bank of the river and shot,” he explained.

“Miklos realized what was happening. He pulled the armband from his pocket and put it on. He walked up to the older soldier and said, ‘These are my Jews.’ The old man looked at him and glanced at the armband. “Very well. You deal with them,’ the old man said as he walked away. My cousin saved our lives that day. He was 14 years old.”

Robert Ratonyi, Holocaust Survivor

 He told of unimaginable horror as German soldiers, “with great efficiency,” dragged 500,000 Jews from their homes in Budapest and surrounding areas, stuffed them into cattle cars and shipped to work camps or death camps.

Many from his extended family did not survive the Nazi’s ‘final solution,’ he said. The day Budapest was liberated by the Red Army in 1945, he said “I was too weak to even watch from the window as the troops entered the area. After we were liberated, we didn’t know for several months if my mother survived the labor camp,” he said. “When they brought her back she had typhus and diphtheria. She was skin and bones. I said, ‘That’s not my mother,’ she looked like a skeleton,” he recalled. His mother eventually recovered.

“A bomb didn’t kill me. I didn’t get sick or die of hunger. But the greatest contributors to my survival were my heroes — my friends, grandparents, cousins and family members.” 

Ratonyi hopes that sharing stories of the Holocaust can avert the danger of history repeating itself.

“It’s important for me to tell my story. There are those who deny the Holocaust, but there’s no point in arguing with them. I don’t know how to deal with them,” he said. He raised the question to the audience: “How could such Nazi atrocities happen in the middle of the 20th century — in an enlightened, educated and civilized Europe?”  

“The answer teaches a valuable moral lesson,” he continued, when 500 million Christians in Europe stood by and said nothing as Nazi Germany’s plan to exterminate millions of Jews proceeded. 

Ratonyi shared Martin Niemöller famous condemnation of those silent bystanders:

‘First they came for the Communists, and I didn’t speak up because I wasn’t a Communist. Then they came for the Socialists and Trade Unionists, and I didn’t speak up because I was neither.

“Then they came for the Jews, and I didn’t speak up because I wasn’t a Jew.

“Then they came for me, and by that time no one was left to speak up for me.” 

The lesson, Ratonyi said, is to never tolerate apathy or indifference to the suffering of others. 

“We should always speak up when we see injustice or prejudice inflicted on other human beings,” he said, concluding with Santayana’s quote: “Those who cannot remember the past are condemned to repeat it.”

Medically Fragile, Going Homeless, and a Broken System

August 10, 2017

Sarah Allen and her medically fragile son Aidan struggle with a state Medicaid system that refuses to obey federal law to provide adequate in-home nursing care for him.

But that pales in comparison to her larger worry: Sarah and Aidan will be without a home and separated in a matter of weeks.

Its wasn’t supposed to go this way. Sarah was happily married and pregnant. Now, she will need to find a shelter somewhere. Her son may become a ward of the state and placed in a nursing facility. They’re hoping for a miracle.

©  2017 Robin Rayne Nelson/ZUMA Press  

All rights reserved

Medicaid rules force single mom to be untrained nurse for her toddler son with serious disabilities.

Sarah Allen gets her son’s meals primed in a pump that delivers a constant flow of the liquid directly into his stomach though a ‘G-tube.’

Marietta, Georgia — Sarah Allen primed the pump for her toddler son Aidan’s gastrostomy tube.  She tried to stay focused. She couldn’t let her anxiety and fear get the better of her, even though the reality of losing what precious little she had – including her son – occupied her mind relentlessly. 

In six weeks, Sarah and her medically fragile child will be homeless and likely be torn apart.

The now-single mom has few resources and no place to go once she’s forced to leave the small house where they’ve been living for the past nine months.  While Sarah could find a women’s shelter, her son’s complex medical condition would be too much of a liability for a shelter to accommodate. Aidan would be likely become a ward of the state and be relocated to foster care or a nursing home. 

 

Medicaid rules force single mom to be untrained nurse for her toddler son with serious disabilities.

Aidan’s daily meals and medications are liquid and constantly flowing from this bag into his stomach.

Aidan was born with cerebral palsy. He has a number of neurological and developmental issues due to a cytomegalovirus, (CMV) a common but not well-recognized virus that can be devastating to unborn children. He is nonverbal and unable to crawl or walk. His vision is limited. He has difficulty swallowing. He requires high-calorie liquid nourishment through a portable pump and tube that leads directly into his stomach, feeding him continuously for 20 hours a day.

Medicaid rules force single mom to be untrained nurse for her toddler son with serious disabilities.

Sarah and her toddler son laugh and giggle as they get ready for the day

Aidan’s complex medical needs require 24-hour care and supervision. Though not a trained  nurse, Sarah is Aidan’s primary caregiver. Other than brief respites when a registered nurse or certified nurse assistant comes to their home to help, Sarah is constantly by Aidan’s side. 

It is Sarah’s full-time job, and one that she never leaves. It is a job that pays nothing, which means Sarah has no income. They live on food stamps and $860 a month in child support and Social Security benefits because of Aidan’s disability.

Before Aidan was born, Sarah married a man she thought she knew. She considered him to be her soul mate.  Sarah was working and looking forward to a happy family life together. “Things were perfect,” she recalled. Several months after their wedding, Sarah was pregnant, eagerly anticipating her role as a mother. After years growing up in an abusive, dysfunctional, drugs-and-alcohol drenched family, “I finally had my family,” she said.

That dream came to an abrupt detour when a doctor’s exam detected serious medical issues with their unborn son. Aidan was considered ‘high risk.’  

Medicaid rules force single mom to be untrained nurse for her toddler son with serious disabilities.

Aidan lays in his mother’s lap as she cleans her son’s mouth with a glycerin swab. He is not allowed to eat anything by mouth.

“The perinatologist encouraged me to terminate my pregnancy. I was told he would likely not survive birth. If he did, he would be born deaf, blind and disabled.” Aidan would likely experience multiple seizures, the doctor told her. 

Sarah refused to terminate the pregnancy. “I had to give my son a chance at life,” she said. 

Aidan’s father left soon after that for job training in Germany. “He was supposed to come home in six weeks. He never did,” she said.  

Aidan was born with the umbilical cord around his neck. He has several brain malformations, with lesions and scars throughout. He suffered a stroke. He has enlarged ventricles, liver and spleen. He has hundreds of seizures every day and his vision is seriously impaired. He doesn’t crawl or walk, and is wheelchair dependent. He is non-verbal and eats with a G-tube throughout the day, she explained. 

Now 28 years old, abandoned by her husband and the life she thought she had — with a medically fragile infant who needed constant care — Sarah moved from place to place and tried to get on with her life. 

“I knew I had to find a way to support us. I didn’t have anyone to watch him, so working a regular job wasn’t possible. I had to be able to drop what I was doing at any time to tend to his seizures so working specific hours from home online wouldn’t work. SSI takes almost 40% of your income anyway, so the money wouldn’t have been much.”

“I came to the conclusion that being an online student would not only enable me to gain an education, but I could also use the student loans for living expenses,” she explained. 
Sarah thought it was a good idea at first. 

Medicaid rules force single mom to be untrained nurse for her toddler son with serious disabilities.

Exhausted from lack of sleep, Sarah tries to rest on a sofa while keeping a close eye on Aidan. He can lay on his tummy but so far is unable to crawl.

“I was able to put down my books and tend to him when he needed it. But then my grades began to suffer. I failed a class. I wasn’t sleeping and it was taking its toll. In order to receive loans, you have to be a full time student. Being a full time student with a normal child is different because your child can go to daycare, a family member or a friend. They don’t need special training for their care. But being a parent to a medically fragile child and being in school full time is an entirely different story. Standard day cares won’t take him.”

There used to be daycare centers in Georgia for medically fragile children, staffed by registered nurses who could provide the required care while parents worked. Cuts in Medicaid funding caused those centers to close in 2015. 

Sarah applied for what is known as ‘Section 8’ public assistance housing but was turned away.  “There was at least a three-year waiting list,” Sarah recalled. “I understand. There are lots of handicapped people who need housing. I just wish these wait lists were a thing of the past.”

She met a man through an online dating service. As they talked over lunch, Sarah shared her story. “That relationship didn’t go anywhere, but he offered this house to me as a place for Aidan and me to live so wouldn’t go homeless,” she said. Small and clean, it was accessible by Aidan’s wheelchair and not far from a hospital.

“We had a home. I could take care of my son. We didn’t have much but we survived,” Sarah reflected.

Though Aidan’s doctor prescribed a consistent and sufficient level of in-home nursing as a medical necessity for Aidan, the Georgia Pediatric Program (GAPP) that manages that support consistently ignored those orders. That support is funded with Medicaid dollars.

“I fought and fought for it, but only received 8 hours per week. Sadly, the 6 nurses I went through in 4 months were no-show or very late for every shift,” she said.  “It became extremely stressful, inconvenient and time consuming to have to train a whole new nurse all over again. After joining a few Facebook support groups for special needs, I learned that’s sadly very common,” she continued.

Medicaid rules force single mom to be untrained nurse for her toddler son with serious disabilities.

Aidan gets a workout on a large rubber ball as part of his weekly physical therapy.

Because of his cerebral palsy, Aidan is reliant upon assistive equipment. He receives weekly physical, occupational, and speech therapies through private companies who take Medicaid. 

“Sometimes he needs supplemental oxygen.  I always keep a suction machine and pulse oximeter nearby, just in case. He sleeps with me, or at least very close to me, because he requires monitoring 24 hours a day, seven days a week. I haven’t slept a full night since he was born. He feeds at a slow rate continuously because he can’t tolerate a lot of food in his stomach,” she explained

.Medicaid rules force single mom to be untrained nurse for her toddler son with serious disabilities.

Aidan is covered by Medicaid for medical bills and disability equipment. They receive EBT food stamps from the state.  Aidan’s special formula costs are covered by Medicaid.

But she is frustrated and angry with the state system that many observers say is woefully broken.

“I need help to care for Aidan. I’ve pleaded for more hours for nursing care. I can’t do it alone like I have been,” she added, noting that he own health is not good either. Sarah’s father died of congestive heart failure. Though she appears to be a vibrant and energetic young woman, Sarah was diagnosed with serious heart issues herself.  

Serving Aidan as his primary caregiver without adequate help is placing her physical and emotional health at risk and that affects Aidan as well, her doctor told her.

The program’s most recent review of Aidan’s case reduced his in-home care to eight hours a week.  

Medicaid rules force single mom to be untrained nurse for her toddler son with serious disabilities.

Wearing a backpack with the ever-present pump and tube connect to Aidan, Sarah encourages her son to enjoy the specially-adapted swing at a nearby park.

“I guess they figure as long as I’m caring for Aidan, they don’t need to,” Sarah said. “I’m a full time nurse without a nursing license, keeping track, grinding up and administering all his medications and working 20 hours a day without income because that’s what my son needs. And the state agency that’s supposed to help simply won’t do what the laws say they must do.” 

“I’m wearing out. I’m performing nursing level care and it is very scary because I could mess up,” she added.

Children are entitled to receive care so that their medical condition does not deteriorate, notes Ruby Moore, director of the Georgia Advocacy Office.

“In-home skilled nursing services are one of the many federally mandated services that enable children to remain at home with their families thereby avoiding the risk of placement in an institution,” she said. 

“The Department of Community Health conducts periodic reviews of hours provided and regularly decreases hours of skilled nursing — contrary to doctor’s prescriptions, “she continued.  

“The arbitrary reduction of a child’s skilled nursing services puts the child at risk for unnecessary medical complications, including death or institutionalization,” she cautioned.

While families have the right to appeal the reduction of services, they often are not sucessful as they cannot afford a lawyer, she noted.  “In failing to provide children with the right to necessary medical care, the State is putting the children and the State of Georgia at risk,” she said. 

Medicaid rules force single mom to be untrained nurse for her toddler son with serious disabilities.

Medicaid rules force single mom to be untrained nurse for her toddler son with serious disabilities.

Headed home after an afternoon outing at a park.

Children subject to these arbitrary decisions are at risk of becoming wards of the state or at risk of entering nursing facilities at government expense.  “As the state is liable for violating the rights of these children, Georgia is at risk for greater liability as a result of its implementation of these willful and irresponsible practices,” she continued.

Meanwhile, Sarah takes life day by day, entertaining her son as best she can with free trips to a local park where they could walk in the fresh air.  A television in the small living room pulls in a scratchy signal from one of the few broadcast stations in Atlanta. Sarah can’t afford to pay for cable television or internet. She’s built some of the furniture in the house herself. Sarah struggles with loneliness and isolation. She longs for friends she can “hang with, someone to just call up and talk,” she said. 

But even when  — or if – the state provides more hours for in-home care, Sarah can’t really leave for more than an hour or two at a time.

“Registered nurses and CNAs are not allowed to lift more than 40 pounds by themselves, so it takes two people,” she said. Sarah’s own heath problems are both a concern and restriction. 

Still, she tries to remain hopeful.

Medicaid rules force single mom to be untrained nurse for her toddler son with serious disabilities.

Sarah tries to stay focused on her son’s care, though the two will soon be forced to leave their home. They will likely be separated.

“I am extremely thankful that we have a roof over our head.  But the owner needs to sell this place in a matter of weeks.  I don’t know where we will go. Maybe God will find a way to give us a home of our own, for the first time in both our lives.” 

“I still wake up with a smile on my face. I have a happy toddler to love for as long as I can,” she added.” I may not have him forever, but I want him to be happy for the time he is here. I want my son to know love and live in a home  — not an institution.”

RN4_2947

Sarah and Aidan share hugs on their front porch.

Faces of the Waiver

July 11, 2017

Individuals with developmental disabilities depend on Medicaid waivers for any quality of life. Thousands in the U.S. are served by the waivers, but thousands more are on waiting lists. Proposed cuts and caps to Medicaid would be devastating for all of them.

By Kip Grosenick and Robin Rayne Nelson

©2017 ZUMA Press All Rights Reserved

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Comer, Georgia — Pam Walley knew it was bad news as soon as she heard the nurse’s cry from her daughter’s bedroom. 

“I think Callie’s leg is broken,” nurse Lori Cain said as she gripped Callie’s thigh with both hands, hoping to immobilize it. 

Pam rushed to her daughter’s bedside and frantically called 911 for an ambulance.  Pam knew by the look on her daughter’s face that her pain was excruciating.  “Your thigh isn’t supposed to be moving in two directions,” Pam recalled. The bone had apparently snapped as Lori was lifting Callie from her bed to get her dressed for a visit to a local swimming pool. 

“It wasn’t anyone’s fault, or anything specific that caused the break,” Pam explained later. “Callie has osteopenia that causes very brittle bones.” 

 Pam and her 22-year-old daughter live in a rural community outside Athens, Georgia with Pam’s husband Richard, who lives with a disability from an accident several years earlier. 

Faces of the Waiver:  Medicaid Waivers Provide a Lifeline for Those with Disabilities

While nurse Lori Cain holds Callie’s thigh to keep it immobilized after her femur snapped, Pam Walley calls for an ambulance to take Callie to the emergency room.

Faces of the Waiver:  Medicaid Waivers Provide a Lifeline for Those with Disabilities

Callie rests in the trauma room after being treated with morphine for her pain. Pam Walley listens as a nurse explains her care plan.

Callie recently finished high school and received her diploma, which she has displayed on her desk. In many ways, Callie is a typical young woman who enjoys manicures and the occasional bit of gossip about the other girls in her community. Pam is clearly proud of the fact that her daughter made it to the high school prom with a date: a typical high school activity made possible because her Medicaid-funded caregiver was present to provide the medical support she needed.

Callie uses gestures and her eyes to communicate. She was born with spastic cerebral palsy and epilepsy, and needs support in a number of areas of her life.  She is legally blind and uses a wheelchair.  

“Callie is the strongest, bravest person I have ever met in my life. I don’t think many tough, grown men could endure what she’s enduring,” Pam offered.

She is committed to giving her daughter the best life possible, as full and as meaningful as she can muster.  

 

Callie requires skilled nursing care at home, funded largely from a Medicaid waiver for individuals with developmental disabilities.

 Those funds may be in jeopardy if proposed cuts to Medicaid are approved in legislation currently under congressional consideration.  

 Pam’s anxiety is palpable as she considered what might have happened had she been by herself with Callie, without a nurse to help manage the broken leg situation. “It would have been disastrous,” she said. 

 “The Medicaid waiver gives my daughter a far better quality of life because of the care it provides. If Medicaid is cut back, Callie and thousand like her will suffer unimaginably,” she explained. 

 Under ordinary circumstances, Callie needs to be turned every two hours. “This broken leg prohibits that kind of movement. Where she is right now, she just wants to be still.” That’s exactly what her doctor ordered.   “The moving is awful, but once she is still again, she’ll give us a smile that I swear is to reassure us.”  

 Pam admits she has her hands full as she helps Callie live a full and meaningful life. “It can become overwhelming at times.”  Her unabating love for her daughter means there are many hats she must wear to give Callie the highest quality of care possible.  “Sometimes I feel like a doctor, a nurse, a social worker, a lawyer, an insurance agent and a politician. I just wanted to be a mama,” she said.    

 Callie’s Medicaid waiver currently provides funding for 121 hours a week of skilled in-home nursing care.  Pam often fills in two shifts a day to care for her daughter when scheduled caregivers call in sick – or just aren’t available. That is in addition to her part-time job in the school system that helps support the family.  Some of Callie’s medical and prescription costs are covered by Pam’s insurance coverage from her job — for now. 

Faces of the Waiver:  Medicaid Waivers Provide a Lifeline for Those with Disabilities

 Pam Walley prays as she comforts her daughter Callie in the Emergency Room at Athens Regional Hospital after her leg was broken.

 With so much on the line, she is watching carefully as the politicians in Washington, D.C. talk about re-crafting national healthcare policies.  “With a number like $800 million being tossed around as potential cuts in Medicaid, I’ve had about enough. When you look at my daughter’s face and know that Medicaid funds are what is keeping her alive, it is much harder to be impressed with saving $800 million.” 

   

 
Like many men in Dalton, Georgia, Lance Stephens is a fierce University of Georgia Bulldog fan. A self-described ‘hamburger connoisseur’  who likes to brew his own beer, Lance also cherishes a night out on the town with his girlfriend.  “I have a good life,” he says with a big smile as he reclines in his motorized wheelchair that supports his thin legs, atrophied from cerebral palsy. “Or CP for short, as they call it,” he says.  Lance is unable to walk, but talking isn’t a problem. He has his opinions, which he happily shares. 

Faces of the Waiver:  Medicaid Provides a Lifeline for Those with Disabilites

Lance Stephens with his host home family, Wendy and Kevin Curtis. “I have a good life now. I hope they don’t mess with Medicaid waivers. My life depends on it,” he says.

Lance doesn’t dwell on his physical limitations. “I can do a whole lot for myself,” he adds. “A whole lot.” 

Lance has lived in a host home for the past seven years with housing sponsors Kevin and Wendy Curtis and their two sons. Their home has been modified to accommodate Lance’s wheelchair, including a long ramp from the parking area to the house, with open spaces and wide doorways inside. Lance has a spacious private room that he keeps tidy and well swept.  He thoroughly enjoys Wendy’s southern cooking and shares Kevin’s love of sports — though not for the same teams.  

 Lance knows his life with the Curtis family could quickly fall apart if Medicaid funds that make it possible are cut from federal and state budgets. 

 “These politicians just ought to stay out of it, this Medicaid thing. People’s lives depend in it, including mine. I’m on it for a reason,” he says. 

Faces of the Waiver:  Medicaid Provides a Lifeline for Those with Disabilites

With his host family Wendy and Kevin Curtis and support coordinator Angela Mackler, Lance Stephens jokes about his favorite sport team, the University of Georgia Bulldogs. Kevin and Wendy are strong University of Tennessee Vols fans.

Faces of the Waiver:  Medicaid Provides a Lifeline for Those with Disabilites

Faces of the Waiver:  Medicaid Provides a Lifeline for Those with Disabilites

Lance uses a dry mop to keep his spacious bedroom clean and tidy. “I can do a whole lot for myself,” he says.

One thing Lance insists on sharing when first meeting someone is listing the many places he has lived in his 48 years. It is a mix of hospitals, group homes, apartments and shared living arrangements.  Many were less than pleasant experiences. “I’ve had a rough life,” he says. 

 “Lance feels like this is his house,” says Wendy, with a loving smile.

With his host family Wendy and Kevin Curtis and support coordinator Angela Mackler, Lance Stephens jokes about his favorite sport team, the University of Georgia Bulldogs. Kevin and Wendy are strong University of Tennessee Vols fans. “The unfortunate reality for Lance – and thousands more like him — is that all the years of hard work to secure a good living arrangement could be in jeopardy if the current cuts in Medicaid proposed by congress become a reality,” she explains. 

 “We’re known as home providers. We opened up our house to Lance and one other person with disabilities in exchange for the Medicaid money offered,” Kevin said.  Managing the home and providing what the two men need for a higher quality of life is the Curtis couple’s full-time job. “It’s not a whole lot of money,” he adds,”that’s not why we’re doing it.”

Kevin Curtis had a massive wooden ramp constructed outside his house to accommodate Lance and his motorized wheelchair.While Lance can do much for himself, there is still a lot of work for those who care for him. Kevin counted a dozen people involved in providing Lance with the care he needs to thrive in his community. Some of them are immediate members of the Curtis family, like their sons, who are not paid.  Others include professional caregivers like the one who accompanies Lance on his outings, and a support coordinator who supervises his care and well-being.  

“There’s lot of moving pieces and a mountain of governmental bureaucracy, both state and federal, to manage,” notes Kevin.  “A world without Medicaid to cover the myriad of costs required to keep Lance healthy, stimulated and alive borders on the unthinkable.” 

 Lance nods in total agreement. “I would be living in an old folks home,” he says. “My life would be miserable. It would be a living hell.”   

Faces of the Waiver:  Medicaid Provides a Lifeline for Those with Disabilites

Kevin Curtis had a massive wooden ramp constructed outside his house to accommodate Lance and his motorized wheelchair.

_____________

 
 
“The whole system of caring for the disabled is in big trouble,“ observes Vaughn Calvert, retired father to 41-year-old son John, who experiences autism. John was born with intellectual challenges that give him the mental ability of a four-year-old child, he explains. With the help of the Georgia Options organization, which provides teams of caregivers for around-the-clock support to those with developmental disabilities, John is able to live in his own apartment in Athens, Georgia.

Faces of the Waiver:  Medicaid Provides a Lifeline for Those with Disabilites

John Calvert enjoys a splash in his apartment complex swimming pool, as direct support staffer Joshua Hall watches

Faces of the Waiver:  Medicaid Provides a Lifeline for Those with DisabilitesJohn Calvert  sorts his laundry in his apartment. John lived at Central State Hospital in Georgia for 14 years before it closed. He was born with intellectual disabilities that left him with a mental ability of a young child. Now 41, John lives in his own apartment with direct support staff to keep him safe, well-nourished and active. That support comes from Georgia Options, a non-profit organization that supports individuals with developmental disabilities, and Medicaid waiver funding makes it all possible. 

Faces of the Waiver:  Medicaid Provides a Lifeline for Those with Disabilites

Dinner time in John’s apartment, as support staffer Joshua Hall works on the day’s notes.

 Previously, John lived for 14 years at Central State Hospital, a massive institution in the middle of Georgia that was once known as the state’s lunatic asylum. It was closed several years ago by federal mandate. Vaughn knew his son needed to be in a place where he could live his own life, but  a nursing home was not the answer.  

“John lives in his own place. He’s his own man,” Vaughn says. “John gets out in the community to go shopping. He visits the local library.  He sees movies and visits a  local YMCA where he swims and plays basketball.” John is also an avid horseman and rides once a week at a local stable that specializes in accommodating people with disabilities.

Faces of the Waiver:  Medicaid Provides a Lifeline for Those with Disabilites

John loves horses and enjoys time at the Butterfly Dreams stable near Athens, Georgia

Faces of the Waiver:  Medicaid Provides a Lifeline for Those with Disabilites

Time on the basketball court with his friend and support staffer Josh Hall

Faces of the Waiver:  Medicaid Provides a Lifeline for Those with Disabilites

John and his sister Laura spend an afternoon in a nature preserve in Athens, Georgia

He rested easier several years ago when John first began living more independently. He believed his son’s care was in good hands. The current Medicaid storm on the horizon has him deeply worried, and he often has sleepless nights. “It’s struggling already, so I think if you decrease Medicaid funding the system will implode for sure,” he says. 

“Our families are in the position that they have to constantly fight from the minute their kid is born to their last breath,” says Rena Harris, who directs Georgia Options. “They can’t rest.  Our families are exhausted.” 

 “The system is not working now, who in their right mind thinks taking money away from it will make it better?” Callie’s mom argues.

 Government agencies use a complicated formula involving clinical assessments to determine who among  thousands of developmentally disabled people are the most needy and eligible for Medicaid. For individuals living outside the walls of institutions, a waiver is required.

 While nearly 12,000 Georgia residents are currently provided with waiver funds, another 8,700 individuals have been approved for the waiver but must wait for funds to open up. The list continues to grow, with only a few hundred approved each year.

 “People with disabilities have the same right as everyone else — to live full and meaningful lives in the community, “ notes Talley Wells, an attorney and co-director of the Disability Law Project at the Institute on Human Development and Disability at the University of Georgia. 

“In 1999, the United States Supreme Court affirmed this right in its landmark Olmstead decision.  It held that requiring someone to receive services in an institution or nursing home is disability discrimination when that person can live at home with supports.” 

Olmstead is often compared to the Brown v. Board decision due to its impact in outlawing segregation of people with disabilities in institutions and requiring integration of people with disabilities in the community.  A Medicaid waiver is often essential to ensuring this integration because it provides what people with disabilities need to live, work, and participate in community life,” he adds..

 If there is any upside in this, it is the opportunity that comes from having Medicaid in the headlines, notes Rena Harris. 

 She is optimistic that many people care about vulnerable citizens but don’t understand what cuts to Medicaid mean. “If we can educate them on what this means and who will be affected, then we might be able to effect change.”  

 She warned against underestimating the community affected by the proposed cuts. “The disability community and self-advocates and people who love them and support them are fierce,” Harris continues. 

“My daughter is a very squeaky wheel even though she’s non-verbal,” Pam Walley adds. “It is incumbent on the rest of us to unite our voices so Callie and others like her can have their message heard.”

Stephenie, At Last

June 14, 2014

Happiness is difficult to define for a person who doesn’t fit neatly into society’s conventional concept of gender. Transitioning to the preferred gender is sometimes the only solution to resolving dissonance between one’s internal identity and how society perceives them. It is especially challenging for older individuals who have lived with the discord for most of their lives — but ultimately decide they must be true to who they are, often at great personal cost.

Stephenie Viewweigh was able to live her last years in the gender she always knew she was. She died Friday, June 13th, 2014.

Stephenie at Last: Transition is an 'Inside Job'

  Story and Photographs © 2014 Robin Rayne Nelson/ZUMA Press

All Rights Reserved

East Point, Georgia –Stephenie Vieweigh would never forget the bitter, metallic taste of the rifle barrel in her mouth. Her finger was on the trigger — and she was pulling it.

“I couldn’t go on living a lie, unable to be who I really was,” she explained.

It was six years ago on a late-summer morning near Turtletown, Tennessee, a small mountain community near the Georgia and North Carolina borders.  Stephenie was sitting beside her kitchen table in the house she built a few years earlier. 

“My friend Dan from the local Alcoholics Anonymous group had stopped to visit. Nobody locks their doors in that town, there just wasn’t any reason to. Dan just walked in the door as I was taking what I thought would be my last breath. He saw me and in a split second grabbed the gun out of my mouth. I just sat there, sobbing, unable to talk,” Stephenie remembered.

“He kept asking, ‘What’s up? What’s wrong?’”

“Everyone in that town only knew me as Stephen. The real me — the person I was in my head, my heart and my soul — was Stephenie. I told him, ‘I know I look like a guy but I’m a woman. I got stuck in the wrong body. I think like a woman. I have the emotions of a woman.  I perceive life in a feminine manner. I’ve known all this since I was about six years old.’”

“I said, ‘If I couldn’t live my life as the woman I knew I was then I didn’t want to go on living. I couldn’t be ‘her’ where I was. I couldn’t not be ‘her.’ The physical, emotional and spiritual pain was more than I could handle.’”

Stephenie’s friend had never heard about transgender, transsexuals or gender identity issues. “I don’t know anything about what you’re saying, but you need to get hold of a therapist. Now,” Dan insisted. He unloaded the rifle and took it with him. He left the bullets on the table.  “I’m sure Dan was bewildered by what he had witnessed. He kept his distance from me after that. I never saw him again.”

steph1

“For as far back as I can remember, I wrestled with knowing I had the wrong body. It was a bad joke that I couldn’t do anything about. I was never male, I just looked like one for most of my life,” said Stephenie, now 69.  As Stephen, she served four years on a destroyer in the Navy and is a Vietnam War veteran. She also earned college degrees in architecture and computer-aided design. “I lived in Indiana, Florida, Tennessee and now Georgia. I worked in construction as a painting contractor, carpenter, framer, plumber, and even as a county computer technician. I presented a male façade as Stephen during the day, but my brain always knew different.”

“For several years when I lived in Florida I’d come home after working all day, get dressed in something pretty and drive thirty minutes to Tampa. I’d visit friends, go to restaurants and just interact with people as Stephenie. Some nights I stayed out until one or two in the morning.   I was always terrified of being discovered,” she continued.

That gender struggle was stuffed down deep when, as Stephen, she met a woman and married. That secret-self had to remain a secret.

“My wife owned a ladies’ consignment shop. My job was to maintain the place. I’d go in after hours, look through all the fabulous clothes and shoes and get dressed while I worked on whatever the place needed. If my wife ever suspected, she never said anything.”The couple moved to Tennessee a few years later and built a home, but the marriage didn’t survive.  “It had nothing to do with my gender issues, though,” she explained.

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Her need to be Stephenie soon emerged stronger than ever. “I returned to living as Stephenie all the time while I was home. I started on hormones but never really saw any change in how I looked. I saw the same ugly mug in the mirror every day. I kept sinking deeper and deeper into depression,” she said.  “I remember tying a rope around my neck several times while sitting in the loft, thinking it would be better to be dead.”

There was no place to go outside of her home. The closest town was more than 90 minutes away.  “Some nights I’d just get dressed in slacks and a blouse and drive around those mountains at midnight when everyone else was asleep, hoping nobody recognized me.”

A recovered alcoholic with 26 years of sobriety at the time, Stephenie thought she could cope with the gender discord.  “But after decades of this torment in my head, I just didn’t want to go on living,”  she said.

A few days after her suicide attempt, Stephenie located a therapist in Atlanta to help her understand gender incongruity. They emailed back and forth several times a day for a few weeks.  “Finally, I found the courage to drive down and see her in person.  We connected right away. I saw her once a week for a few months. I didn’t feel like blowing my brains out anymore.”

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After several months of sessions, the therapist persuaded Stephenie to move to Atlanta and begin living full-time in her preferred gender. “I couldn’t go on the way I was.  I‘d lost my house in foreclosure and didn’t have any place to live,” she explained.

Two weeks later, her red pickup truck loaded with boxes of clothes and a few personal items, Stephenie left rural Tennessee for a new life in Atlanta.

“As soon as I got out of my driveway, I felt free. There was this huge sense of relief. It was all about coming unattached to what I’d been attached to. It was more than just Tennessee, it was my whole life up to that point. It was exciting and extremely scary. I’d heard all these stories about transgendered people getting stabbed, mugged, beat up or shot.”

“I suppose I’m what some people call a ‘late bloomer,’ but age doesn’t really have anything to do with it. I reached a point where I either had to be Stephenie or be dead, but I’d come through too much in my years of sobriety to be dead because of this,” she continued.

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“I made the decision to push through my fears. I allowed myself to open the door and get on with my life. At 63, I was finally going to be the real me in front of everyone. I wasn’t going to lie any more.” she said.  “That decision saved my life.”

Stephenie rented a succession of bedrooms in and around Atlanta, hoping to find work to supplement her limited Social Security income.  It didn’t worked out as she’d hoped. Last year she was robbed at gunpoint in the house where she was living. “They took my rent money, food money, my purse, makeup, computer, my car, my ID, everything. But I’m still alive,” she said.

 “When I came to Atlanta, the public’s awareness of transgender was nothing like it is now. When I got here there were lots of stares and whispers. I got all caught up in being accepted by other people. I relied on how other people viewed me. If other people liked me and accepted me then I could like me. I relied on other people’s comments to know how to feel about myself. It hurt in the beginning because I wanted to go from  Stephen to Stephenie at 100 percent. I wanted everything to be wonderful.”

“I also got caught up in the commercialism of being a woman — the right clothes, the right hairdo, the right makeup. That’s all outside stuff. It has nothing to do with who you are as a person,” she said.

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She calls transitioning an ‘inside job.’ 

“It’s not about other people putting their arm around you and telling you you’re okay. My transition succeeded the day I accepted exactly who I am, what I look like and how I present myself.  When I realized that, I said, ‘Yippee, I can do this!’  If there are those who point and snicker or show disrespect, I don’t pay them any attention these days,” she said.

“If people like me, that’s fine. If people like how I’m dressed or how I wear my makeup, that’s fine.  If they don’t, that’s fine, too. They have that choice, just like I have that choice. My voice is a bit rough and I know I’m never going to be what society calls pretty, but I don’t need other people to validate my own sense of who I am. These days hardly anyone addresses me as ‘sir,’” she added.

“I know my face isn’t beautiful, but so what?  To who?  Take the makeup off a lot of those models and see what they look like. Women have bought into the lie that they are only what they look like.”

 Stephenie limits herself to one meal a day out of habit and financial necessity. Her Social Security check goes for rent, utilities, food, cell phone service and car insurance, with enough left to buy peanuts for her neighborhood squirrels. She manages to make weekly visits to a local AA meeting and drives thirty miles each way to a gender support group every few months.

Tall and thin, Stephenie exudes an unwavering confidence in her internal sense of identity, though she has as no funds for a legal name change. Her driver’s license still reveals her birth name and sex.  Her prominent bust is the result of silicone breast forms. “They look, feel and jiggle just like real boobies.They just come off at night,” she joked. “I don’t have money for doctors, hormone therapy or sex reassignment surgery, but I’m too old for all that now anyway,” she said, wistfully.

“Transgender stories are all over the newspapers and television now. Maybe we’re not totally accepted yet but society is much more aware of our struggles these days,” she said.

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 “An old friend from Florida managed to find me a few months ago on the Internet. We actually dated many years ago. I told her about my transition to Stephenie and what my life had come to. She was very accepting.” 

“She invited me to come live with her. We’ll share the food bills and utilities and I’ll have enough money to live on. It will be great to be with my friend, away from all the crime in Atlanta. I can start living instead of just existing.”

 “At last I can have my license changed to read ‘Stephenie.’  Maybe I’ll see some other friends from back then, once I get moved,” she said.  “I’m sure we’ve all changed a lot — maybe some of us more than others.”

~~~
Stephenie got herself to central Florida in late January to live with Kip, her friend from years ago. Her life seemed to be starting a new chapter, even as she approached her 70th birthday.
She’d been in Florida only a few weeks when she began coughing. It grew steadily worse. “You’re sick, you need to go to the doctor,” Kip told her. 
The doctor’s diagnosis was blunt. “You have lung cancer,” he told her. She was admitted to the hospital, where further tests revealed a brain tumor as well.  It was Stage 4 cancer.  He suggested radiation treatments to keep the tumors small, at least for a while. “I guess I shouldn’t be surprised, with all the cigarettes in my life,” Stephenie said. 
Once she was released from the hospital, Stephenie learned she was no longer welcome at her friend’s house.   With no money, no transportation and no place to live, a hospital social worker directed her to a modest group home that provided a bed and meals.
 Stephenie had to present as Stephen in order to move there. It was a matter of survival. 
'Vacation Rental' Group Home Abuses Sick Elderly
The home was in the country, miles from town, her doctor or any stores. Her hair and beard had grown long and grey. Her makeup, heels, blouses and dresses were stuffed into a duffel bag. Stephenie had gone underground. It was a painful re-transition.
Her roommate was Robert, a former realtor from Palm Beach who had lost his wife and now had spine problems. The cramped room they shared lacked heat or a working air conditioner, but they were afraid to complain. They were both one step away from being homeless. 
“It was horrible,” Stephenie said. “There was one toilet for eight people, and it didn’t work very well.  We are macaroni and cheese or rice and beans most days.”
The owners had placed a lock on the refrigerator door to keep the residents from between-meal nibbling. They also drove their residents to a bank on the first of every month to cash their social security checks. The owners took most of it, leaving Stephenie and her housemates with a just a few dollars for personal necessities. The home had been investigated numerous times for suspected abuse, but the owners were never convicted. 
After several months, Stephenie called the county’s adult protective services out of fear and hunger. Investigators managed to get her designated as a ward of the state.  She was relocated to another home with honest and compassionate caregivers, Valerie and Howard.
Stephenie began radiation treatments and ate heartily to regain her strength. “Being here with these people, it’s like heaven,” she said. “The food is wonderful and they are very nice to me. I even have my own room,” she said.  She was grateful — and hopeful.
Stephenie continued to present as Stephen. “I didn’t want to cause problems or answer questions,” she said. “I know who I am so it doesn’t really matter, does it?”
Questions briefly surfaced when Valerie helped her unpack her duffel bag of clothes and found only the blouses, slinky dresses and designer sandals. “They were just some clothes a friend gave me because she owned me some money,” was Stephenie’s explanation.  The couple managed to find some used men’s shirts and jeans for Stephenie to wear. Neither Valerie nor her husband mentioned her wardrobe again.
Stephenie’s cancer grew despite the radiation treatments. A few weeks after she had been relocated, she suffered a massive seizure. Then, a large blood clot caused her leg to swell with excruciating pain a few days later. Stephenie was soon back in the emergency room,  then readmitted to the hospital. 
She was transferred to a nearby hospice center the following week. 
“I’ve had a full life.  I know I’m terminal.  I’m ready to get out of here. At least I got to live as Stephenie for a while,” she said, pensively.
As Memorial Day approached, her doctors ordered  morphine to ease the pain in her chest from the quickly advancing cancer. She slipped in and out of consciousness as the drug took effect.
Valerie and her husband  eventually learned the truth about Stephenie’s gender identity
“Well, that certainly explains the clothes,” Valerie said.  “I’m going to call her Stephenie from now on. Oh, how I wish I’d known this before. We could have made her a lot more comfortable. I feel bad that she thought she had to hide who she really was.”
The hospice center’s social worker agreed. “It’s our mission to make our patients as comfortable as possible,” she said. Even though Stephenie was quickly approaching the end and wasn’t able to talk much, she could hear what others  were saying in the room, the social worker explained.
“Hearing is the last thing to go. I know she can hear us so I’ve instructed the nursing staff to address Stephenie by her preferred name and gender from now on.”
A few days before she died,  Stephenie told Valerie of a conversation with her roommate who was a Baptist pastor. They talked about God. Stephenie was afraid of dying alone.
“She wanted to know for sure if God was real,” Valerie explained. “She and the pastor talked a long time. Late that night, their  room filled with a beautiful light. Steph said she knew Jesus was there. She felt overwhelmed with love and she knew God was real. The next morning the pastor asked if something happened during the night. Stephenie told him what she’d seen.  “I know, I felt it too,” he told her.
Valerie offered to shave Stephenie’s  beard so she would be more comfortable as herself, but she declined. 
“I guess it doesn’t really matter, God loves us no matter how others see us. And there is no gender in heaven. We leave these bodies behind,” Valerie said to her. “It’s our spirits that go to Heaven.”
~~~
Stephenie died on a gentle June morning. Valerie sat beside her and prayed as soothing flute music played softly from a CD player she’d brought with her.  She held Stephenie’s hand for more than an hour as life slowly slipped away.  Then there was her final breath. The room became still. 
“She had no family, but she died knowing she was loved,” Valerie said, wiping tears from her eyes. “She didn’t die alone.”
Back at the house, Valerie began the sad task of sorting through Stephenie’s personal effects still in her bedroom.  She planned to donate her wardrobe to a nearby thrift store that supported the local Humane Society.  “She had twenty pairs of heels and sandals and nearly as many purses stashed in her duffel bags, as well as the dresses and blouses. I know Stephie wanted to help care for the animals who didn’t have a home.”
Valerie found some papers among Stephenie’s possessions that indicated she’d purchased a casket and a burial plot years ago in St. Petersburg. A local funeral home offered to drive her remains to the cemetery and take care of the burial. “Her grave will remain unmarked.  I guess she decided she didn’t need a stone,” Valerie said.
As Valerie packed Stephenie’s clothes for the charity, she kept an eye out for the small token that Stephenie treasured — the one inscribed, ‘To Thine Own Self Be True.’  She wanted to hold onto it.
“That was Stephenie. She was finally true to who she was —  even if she didn’t look like it in the end,” she said.
“I learned a lot about gender and accepting people for who they are,  just loving people as they are,” Valerie added. “I’ll miss her.”
 © Robin Rayne Nelson
All Rights Reserved