The Register Citizen (Torrington, CT)
One family, generations of disabilities
Constants in household include medications, diagnoses, monthly checks
PEMISCOT COUNTY, MO. » The food was nearly gone and the bills were going unpaid, but they still had their pills, and that was what they thought of as the sky brightened and they awoke, one by one. First came Kathy Strait, 55, who withdrew six pills from a miniature backpack and swallowed them. Then emerged her daughter, Franny Tidwell, 32, who rummaged through 29 bottles of medication atop the refrigerator and brought down her own: oxcarbazepine for bipolar disorder, fluoxetine for depression, an opiate for pain. She next reached for two green bottles of Tenex, a medication for hyperactivity, filled two glasses with water and said, “Come here, boys.”
The boys were identical twins, William and Dale, 10. They were the fourth generation in this family to receive federal disability checks, and the first to be declared no longer disabled and have them taken away. In days that had grown increasingly tense, as debts mounted and desperation grew to prove that the twins should be on disability, this was always the worst time, before the medication kicked in, when the mobile home was filled with the sounds of children fight-
ing, dogs barking, adults yelling, television volume turned up.
And so went another morning, loud and chaotic, right up until the moment someone dropped the puppy.
As it fell the four feet to the ground, the trailer suddenly quieted. The four children stopped fighting. The two adults stopped yelling. Then the weeks-old puppy hit the scuffed linoleum floor, whimpered softly, and events, no longer suspended, began to unfold again.
“It’s dying,” Dale said, looking at the cocoa-colored dog, which had gone limp. “It’s dying. It’s dying.”
“It might have snapped its neck,” Kathy said.
William looked at the puppy, then at the medications collected above the refrigerator, then at his mother, Franny, who wasn’t saying anything.
“Mommy, give him some medicine to keep him alive,” William said. “He’s dead,” Dale said. “Give him some pain medicine!” William said.
“Your puppy just died,” Dale said.
“Give him some pain medicine!” William said again.
Talk of medications, of diagnoses, of monthly checks that never seem to cover every need — these are the constants in households like this one, composed of multiple generations of people living on disability. Littlestudied and largely unreported, such families have become familiar in rural communities reshaped by a decades-long surge that swelled the nation’s disability rolls by millions before declining slightly in 2015 as older beneficiaries aged into retirement benefits, according to interviews with social workers, lawyers, school officials, academics and rural residents.
How to visualize the growth in disability in the United States? One way is to think of a map. Rural communities, where on average 9.1 percent of working-age people are on disability — nearly twice the urban rate and 40 percent higher than the national average — are in a brighter shade than cities. An even brighter hue then spreads from Appalachia into the Deep South and out into Missouri, where rates are higher yet, places economists have called “disability belts.” The brightest color of all can be found in 102 counties, mostly within these belts, where a Washington Post analysis of federal statistics estimates that, at minimum, about 1 in 6 working-age residents draw disability checks.
As the number of working-age Americans receiving disability rose from 7.7 million in 1996 to 13 million in 2015, so did the number of households with multiple family members on disability, climbing from an estimated 525,000 in 2000 to an estimated 850,000 in 2015, according to a Post analysis of census data. The analysis is probably an undercount.
A separate Post examination of census data found that households reporting at least one disabled adult are three times as likely to report having a disabled child, too, although most households affected by disability report only one disabled member. Multigenerational disability, The Post found, is far more common in poor families.
“I’ve been aware of it my whole professional life,” said Michael L. Price, a demographer who retired from the University of Louisville in 2013. “In eastern Kentucky and other rural areas, you’re more likely to have intergenerational households, not just two but three generations. You have grandparents, very young grandparents, living together with grandchildren or in close proximity. And families don’t separate, so it sets it up not only for the next generation, but for two generations, that ‘This is what’s there, this is what you’re dependent on.’ “
Other experts, however, say the phenomenon has little to do with generational dependence. “I hesitate to use a term like ‘culture.’ It’s not a specific, measurable metric,” said Kathleen Romig, an analyst with the Center on Budget and Policy Priorities, who studies disability in the United States. “Certain things like toxic stress or nutrition or preterm births or parental depression or genetics” offer a more revealing context for understanding generational disability.
And yet others say it’s about money.
Ruth Horn, director of social services in Buchanan County, Va., which has one of the country’s highest rates of disability, has spent decades working with profoundly poor families. Some parents, she said, don’t encourage their children academically, and even actively discourage them from doing well, because they view disability as a “source of income,” and think failure will help the family receive a check.
“It’s not a hard thing to limit a person,” Horn said, adding: “It’s generations deep.” **** For this family in Pemiscot County, crowding around their dazed puppy, the momentum was beginning to waver. The boys, who started receiving benefits after their premature birth, had recently lost them as the government stepped up its periodic reviews, which rose from 925,000 in 2010 to 2.1 million in 2016. Now their grandmother and mother, certain the twins were autistic, were trying to convince the government that it had made a mistake. They knew it wouldn’t be easy but hoped that a psychological assessment of the children, due any day now, would provide just the proof they needed. In their minds, it had come down to this: Prove the boys were autistic, get the checks back and climb from crushing poverty into manageable poverty.
Kathy set the puppy down on the kitchen table, and it took a wobbly step, then another.
“I’m going to name you Miracle,” she said softly. “Because it’s a miracle you’re alive.” Now came reality. This month, reality was a $600 electricity bill that included late payments. An additional $350 for the mortgage, $45 for water, $300 for cellphones. Then $98 for cable television, $35 for Internet service, $315 for furniture bought on credit, $35 for car insurance and $60 for life insurance.
Kathy sat with a notepad that said “Live Like Your Life Depends On It” and did the math. Their monthly checks totaled $2,005 - $1,128 less than when the twins received benefits - and bills would consume all of it except $167. There wouldn’t be enough to whittle down her payday loans. Or to settle up with the school for her granddaughter’s cheerleading. Or to pay her lawyer for a divorce from her fourth husband.
“Short,” she sighed, and more and more she was feeling that way about everything in her life. Her daughter, Franny, born with a mild version of Down syndrome known as mosaic and an IQ of about 75, couldn’t help manage the house, so Kathy had to make all of the decisions, and sometimes she didn’t know whether they were the right ones. The twins kept misbehaving, and she didn’t know how to get them to stop, so she yelled at them. She took the family to McDonald’s because they liked it, even though she knew they couldn’t afford to eat out. She went through more pain pills than she needed, and every few weeks, when those pills ran low, like today, she returned to the doctor for more.
“Can I make a food list?” the twins’ older sister, Kaitlyn, 12, asked as they got ready to go to the pain clinic.
“When the food stamps come in,” Kathy said, knowing that wouldn’t happen for two weeks.
With Dale away with a relative, she loaded the rest of the family — Franny, William, Kaitlyn and Bella, 4 — into the their dented Ford Taurus and started the engine. Rubbing her right forearm, she drove out into a county of endless farmland, where the poverty rate is more than twice the national figure, life expectancy is seven years shorter than the national average and the disability rate is nearly three times what it is nationally.
Disability characterized her family’s story, too. Kathy’s father, an illiterate laborer, had gone on disability after damaging an arm while working on a manhole. Franny went on it next. Then Kathy, who had dropped out of high school and had her first child at 15, hurt her shoulder working at a gas pump hose factory. Several denials and applications later, and after the twins started collecting benefits, Kathy began receiving disability, too.
She looked in the rearview mirror. William was in the back seat, sleeping.
“Franny, what’s wrong with William?” she asked.
“You’re not hurting, are you, William?” Franny asked her son a little while later.
“He’s depressed, is what he is,” Kathy said, ascribing his mood to not being able to play video games.
There was a time when Kathy hadn’t given much thought to mental health. But after ADHD was diagnosed in the twins and they were medicated for issues at home and school - “always on the go,” one teacher recalled — she started looking into other behavioral disorders to better understand what was wrong. She became convinced that her grandsons also had bipolar disorder and obsessive compulsive disorder because they threw fits and wanted the dishes stacked just so. And when they placed toy cars in a straight line - a possible sign of autism, she had learned - she thought they were autistic. Then, to her, it wasn’t just the boys but also her adult children, her other grandchildren and herself. Everyone, it seemed, suffered from something.
“I tell you, there’s only one fork I eat with,” her daughter-in-law said one night over dinner. “And it’s got to be this one.”
“That’s autism,” Kathy said.
Kathy steered into Kennett, one of the biggest cities in the area with a population of 10,932, and passed the Social Security office. She thought of the dozens of times she had gone in there, appealing denials, or picking up papers for Franny, or contesting the government’s decision to remove the twins from disability, and felt frustrated again. How could they not see how disabled the boys were? How could they take what little they had? Couldn’t they understand that she was raising this family alone and that she needed more help - not less? A few days after William’s check was taken away, she created an online fundraiser. “I’m disabled and need help,” she wrote, but after receiving several comments from neighbors telling her to get a job, she took it down.
She pulled up to the pain clinic, past a slogan that said, “Where Life Just Gets Better,” and followed Franny and the kids inside. “Y’all be good now,” she whispered, settling the children beside a sign listing 26 possible side effects of narcotics before noticing a woman she knew.
“First time seeing you in here,” the woman said.
“Really? I come every month,” Kathy said.
“I do, too,” the woman said. “So, how you doing?” There was a pause. “Pretty good, I guess,” Kathy said, shrugging slightly. “Raising grandbabies.”