Tangible Value

ROMA KIDD REFLECTS ON A LIFETIME OF SERVING INDIVIDUALS WITH DEVELOPMENTAL DISABILITIES AMID SOCIETY’S EVOLVING ATTITUDES, AND HOW LIFE ON A FARM SET HER ON A MISSION. NOW, SHE’S IN THE FIGHT OF HER LIFE.

Photographs by Brad Arender | Article by Michael DeVault

Roma Kidd remembers her childhood in rural Mississippi with a fondness and love for the life she had growing up. Theirs was a working farm, and the work was hard. But there was something about her youth that stuck with her.
Her family owned a farm in Mississippi, south of Laurel on the edges of the Piney Woods region. It was in this idyllic setting that she grew up, amid towering pines and sun-soaked hills, playing chase on the property and working alongside her parents and siblings to make sure the farm kept running.

“We all had chores, from whenever we were old enough to walk, but it wasn’t made up work,” Kidd says. “It was real work, and what we were doing had a tangible value. Even as little kids, the chores weren’t contrived. We could see how what we did fit in with everything else that was going on.”

Gathering eggs in the morning meant eggs for breakfast and cakes for dinner. If someone failed to gather the eggs, then that meant no breakfast, no cakes. The same was true for butter, for vegetables, and a host of other activities that directly related to her family’s well-being.

“As a result, we knew the work we were doing was important, and we understood it was intrinsic to our life,” she says. “And the games we played! We had so many great memories and such fun as children. But always, there were chores, and we knew they were important.”

From these daily tasks, Kidd’s parents instilled in her at a young age the belief that all contributions, no matter how small, are important. Moreover, everyone could contribute. It was a lesson she would carry with her the rest of her life, first to college and then, eventually, into the field of special education.
She graduated from the University of Southern Mississippi with a B.S. in psychology, with plans to pursue a doctorate and enter clinical practice. But first, she had to earn the money to pay for it. With a minor in childhood development, Kidd secured a job at a residential facility for children born with developmental or cognitive impairment – euphemistically called a “state school.”

This was 1970, and the field of special education was just beginning to evolve. Doctors still routinely counseled families to place children with developmental disabilities in state facilities – and then tell their family and friends the children had died. State schools were where many of those children ended up. At a facility near Ellisville, some 1,100 children lived out their lives. Kidd’s job was to teach ten children in the morning and again in the afternoon. She found the work challenging.

“I was only going to be there long enough to get back in school and get that doctorate in clinical psychology,” she says. But then there were her students and the work she was growing to love at the state school. “I soon, soon determined my heart was in the field of special education and that, what I really love, is educational psychology.”

From her classroom, Kidd could see how the young minds she had been tasked with nourishing processed information – and more importantly, how they processed it differently. Each child could learn concepts and practices, but each also learned differently than their classmates. Those ten children in her first class triggered a lightbulb. If these kids could be taught complex concepts, what about the other children at the facility.

The other children.

Kidd was one of just three teachers at the facility, instructing between them a total of thirty students. But what of the other 1,070 or so children homed there? This was 1970, after all.

“Those thirty children were the only ones who had any programming at all,” Kidd says. “The others were stuck in large dorms that were pretty inhumane.”

Kidd wasn’t the first teacher to realize her students and people like them could learn, could develop the skills necessary to become a part of society, and more importantly, to remain in their families. By the early 1970s, psychologists had begun to examine methods to improve the lives of the “mentally retarded,” as they were then known. Money from state and federal agencies had begun to flow to state facilities like the one where Kidd worked.

“Suddenly, the place was just alive with people who had degrees in all kinds of things – speech pathology, physical therapy, nursing – and we all started to learn from each other,” she says. They formed working groups around individual residents and groups of residents, and they made observations. Now, instead of a “state school” where families were encouraged to leave children with developmental challenges, the place became a lab with a mission: find out how to better the lives of the people they were there to serve. “What we learned was that the people who lived in that big residential school could learn. They could learn, they could do things that people previously thought they weren’t capable of doing.”

Occupational training led to vocational training. They could not only learn concepts like numbers, but they could learn to keep a check register, to dress themselves or tend themselves in the restroom. They could learn independence and self-reliance.

“It was extremely exciting to see folks who had been thought not to be able to feed themselves suddenly learning to feed themselves – and to do all sorts of other things!” Kidd says, her enthusiasm infectious and revealing just a glimpse of the pace the world of caring for people with special needs was changing. In fact, even the terminology was changing.
In the early 1900s, doctors had three classifications for children born with developmental or cognitive disabilities. They labeled them imbeciles, idiots and morons, each label carrying with it a different set of stigma based on the perceived level of abilities or inabilities of the patient they were examining. By the mid-1970s, the individuals were said to suffer from mental retardation – an upgrade, Kidd notes, over the previous terminology.

“It added a different picture, an improved picture, for these people,” she says. “Today of course, that label has taken a very negative connotation, and we’ve now moved to intellectual disability or developmental disability, which is even more encompassing.”

This subtle shift in vocabulary may seem irrelevant, but Kidd points out that’s hardly the case. In fact, she says, the changing labels signify the titanic shifts society is experiencing when it comes to people with developmental or intellectual challenges.

“Words will reflect the thinking of our society,” Kidd says. “Perhaps the most important thing we can do as individuals is not worry so much about the words we use – but rather how we are thinking about people and how we are treating people, because I guarantee you, tomorrow someone is going to come up with a better word, a better turn of phrase to describe people.”

Turns of phrase weren’t the only ways care for developmentally disabled children was changing. With the watershed realization that these kids could be taught, could in fact learn, so too changed the belief for how families should respond to the birth of special needs kids. Instead of sending kids off to state homes in secrecy and shame, the stigma began to evaporate and care providers began to focus on helping families create nurturing environments for their children.

“We all started to learn from families, and that was the beginning of the whole idea of people being able to remain in their communities with the support they needed,” she says, placing special emphasis on support.

She left Ellisville for a job at a diagnosis and evaluation center, another state facility where she assessed children and helped to develop programs to assist children and families to better integrate kids into their community. This was a novel approach to people with developmental disabilities, she notes. She also points out that the best practices of the day weren’t necessarily born out of hatred or even fear. Instead, she notes that the idea of homing these children came from “very kind people who thought folks with developmental disabilities didn’t need to be exposed to the harshness of the world.” What first seems a gentle notion in theory in practice becomes a nightmare.

“What they didn’t understand was that those institutions were far harsher than anything the world had to offer,” she says. “It was a sad mistake.”

Thankfully, people like Kidd were intent on correcting the mistake, rectifying the damage that had been done, and building a network of support to ensure it never happened again. At the same time, they also undertook the herculean task of educating the public about people born with developmental challenges, and that meant helping these people confront their fears.

Having compassion for the people she serves is one thing. But Kidd also exhibits that same compassion for society as a whole, where people often recoil from people with intellectual and developmental disabilities. She points out that the reaction people have when they see someone who is different from themselves is completely natural and is, in fact, the result of evolution. The only way to change that fear is to make sure people become conditioned to seeing the differences, acknowledging them and learning to accept and trust them. On that front, Kidd notes the world has come a long way.

“We’ve moved out of that stage of fear, because people are no longer hidden away,” she says. “They’re in society, and there are opportunities for people to interact. The way you kill fear is through interaction.”

For many, those fear-killing interactions begin in elementary school, where children with developmental and intellectual disabilities attend classes with other children. For others, the interactions happen in the workplace or in restaurants and grocery stores. These interactions take place because of people like Kidd, the trust of the families they support and the work of organizations like ARCO, the non-profit Kidd has led for more than 34 years.

After more than a decade of working in Mississippi, Kidd met her future husband, Bob, and they married. Soon it became apparent that they needed to relocate to northeastern Louisiana, to Rayville, where Bob’s aging parents needed assistance and support. Kidd remembers coming to northeast Louisiana and discovering her job at ARCO.

“I thought I had died and gone to heaven, because in Louisiana, the families had coalesced and lobbied the state to create a whole office around disabilities,” she says. “In those days, it was called the Office of Mental Retardation, or OMR.”

Working with state officials in OMR, families with children who had developmental disabilities had secured state funding to help build support networks through which families and their children could get the support they needed to keep kids at home, to help develop their skills, and to put them on a path to independence. Working in Mississippi, Kidd and her colleagues had learned these individuals were capable of far more than anyone had previously thought possible. Through that, she also realized these were people with goals and dreams and, perhaps most importantly, with the abilities to achieve those dreams. All these families and their children needed were the specialized tools necessary to achieve them, and in Louisiana, groups like ARCO were there to give them those tools.

“Families have a clear vision of what they want for their sons and daughters,” Kidd says. “Whether a child is born with a developmental disability or a brain ready to be a doctor, the family wants independence for their child, a life with self-worth and self-actualization in which their children have dreams, grow those dreams and ultimately realize them. That sounds like something that’s almost unachievable, but it’s not. They want their children to have good, everyday lives. They want them to do things that are normal and regular, with their friends, and to have the support they need to do that.”

The secret to the success of these efforts is the word, “support.” For some, that can mean as little as a gentle reminder to take medicines at a certain time. For others, that could mean mobility assistance.

“These families guard and respect their sons and daughters, and they want them to have a life that is their own,” she says. That means another sea-change in society’s view of individuals with developmental disabilities and their families. The idea that these kids can never leave home is quickly evaporating. “We’re showing these parents that they, too, can look forward to an empty nest, that their sons and daughters can grow into independent people and lead the lives they want for their kids.”

Achieving this vision requires a partnership between the families and. the support providers to help their family members achieve these goals, and so much more. It’s a highly specialized field in which training is paramount. And therein lies the challenge.

The money that had begun in the 1970s to flow into support organizations through Medicaid and state programs had begun, by the 2000s, to dry up. At the same time, the strings attached to receiving state funding continued to increase both in number and complexity. Where once organizations had enjoyed robust funding and the freedom to develop plans of action for clients and families based on the needs of the family, the specter of bureaucracy began to threaten ARCO’s ability to perform its critical mission effectively.

This strain is euphemistically called “compliance,” and for non-profits like ARCO, compliance increasingly means taking time away from providing support and developing the skills and knowledge necessary to serve individuals with developmental disabilities, and spending that time on attending to paperwork that has little to do with the organization’s mission, all under the near-constant threat of an agency recouping money ARCO has already spent. The strain can, at times, seem almost unbearable.

If the strain attached to those dollars wasn’t enough of a challenge, shrinking state coffers have also had a marked impact, completing a one-two punch of sorts for organizations that provide support. There is less money, and it’s harder to spend than it was just 10 years ago. Kidd puts it in direct terms.

“We are paid less today than we were in 2008, when minimum wage went from $5.15 to $5.85,” she says. “What we are paid by Medicaid to perform these services is less today than it was then.”

The danger for ARCO and other organizations lies in the complexity of Medicaid reimbursements, the complex rules governing how much a provider can “bill” for services provided to its clients. Thirty years ago, Medicaid and programs like it funded the cost of services and development of new employees and programs. Today, the reimbursements don’t cover the hourly wage of employees, much less the costs of administering the program, developing new programs to face emerging challenges or training new employees.

And because wages in the industry are low, there are always new employees.

“The result is an extraordinarily high turnover rate,” Kidd says. “People who have good intentions and good hearts, who want to do this, but simply cannot afford to do this. That’s our challenge. That’s what steals our time.”

Maintaining the level of support and achievement groups like ARCO has reached is the problem that keeps Kidd up at night. As a non-profit, ARCO can solicit both state and private funding. Over the years, the group has raised money from the community, and that money has funded additional training for employees, developed new programs and initiatives and helps recruit top talent in the field. That’s not the case anymore.

“Today, we use that money to make payroll,” Kidd says. “Today, we need help just meeting the minimum standards. We are no longer able to be what I think a non-profit needs to be – a model of what could be done if we do things the right way.”

As an elected representative for northeastern Louisiana, State Sen. Mike Walsworth is one of the legislators tasked with appropriating the money for groups like ARCO throughout the state. During the legislative session, people like Walsworth must weigh how to spend the tax dollars the government has collected. It’s a delicate balancing act, and it requires people advocating for their constituents. On this front, Walsworth calls Kidd a fierce champion for the community she represents.

“People with developmental disabilities know no greater champion in Baton Rouge than Roma Kidd,” he says. “She’s ferocious in her advocacy for these individuals.”

But like ARCO, the state has dealt with consistently diminishing coffers. Fewer dollars are coming in both from state taxpayers and the federal government, which appropriates the majority of Medicaid dollars to the states. Each year, the Legislature undertakes the delicate task of balancing the state budget and addressing as many of the state’s needs as possible. While Louisiana receives a sizable distribution from the federal Medicare program, 60 percent of those dollars are required to go into particular programs. The remaining 40 percent is divvied up between a host of other “discretionary” programs – optional services that include organizations like ARCO. From the beginning of the year until the Legislature gavels into session, representatives from thousands of organizations come to Baton Rouge to vie for a share of that money.

“Without Roma and people like her, people who bring this message to the Legislature, who advocate for this community of people and their families, there’s a very real chance that those dollars would go somewhere else, to fill some other need,” Walsworth says. “She’s here, on the ground, fighting for ARCO and for the people they’re helping. And that work isn’t just for northeast Louisiana, either.”

Walsworth notes that Kidd is a respected advocate around the state, and legislators from around Louisiana know her and hear her message every year. For Kidd, these financial challenges mean she has to divide her time between leading her organization and fighting for its survival.

Over the years, she’s assembled a remarkable team of support providers, administrative staff and community volunteers. That team includes her husband, Bob, a professional videographer whom Kidd credits with giving her “all the time in the world” to do the job she is so passionate about. Long hours are the norm for Kidd and her staff — and the hours are getting longer. Every year, they face new challenges in funding and new threats to the future. And every year, so far, they’ve met those challenges.

For more than 40 years, she’s been that fierce champion, and while she knows there will come a day when she is no longer filling this role, that day is still “down the road” somewhere. Right now, she has one goal she wants to accomplish before she moves on. For now, she’ll continue the fight for funding and the march towards a better understanding between society and people with developmental and intellectual disabilities.

“I want to make sure, before I go, that the work we’ve done continues, that the network of support we’ve created will still be there when I’m gone, that the ground we’ve gained won’t be lost,” she says. “Whether that’s three years, ten years, who knows.”