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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.”

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One Comment leave one →
  1. Jane Grillo permalink
    July 12, 2017 6:36 am

    Thank you for showing the stories of these real people and their families. Medicaid is vital to them and not just a partisan waste of taxpayer dollars. I hope that showing these stories will help others who do not live with a person with a disability understand that these lives matter.

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