Dee Shaffer made a choice years ago.
She would step out of her own life and devote her hours, energy, money -- everything she had for the rest of her days -- to Brian, her firstborn, her severely autistic and disabled son.
She would search for help from medical professionals, and if she couldn’t find it, she would take on the responsibility herself. She would challenge anybody, including state officials and agencies, who would deny him the kind of care she is convinced he needs.
More than 33 years of this devotion to his cause, this is what her life has become.
She is lucky to get four hours sleep in the night. On a recent Friday in November, she was awake with him until 5 a.m., when he finally fell asleep, and then up with him three hours later.
She eats mostly what he eats, which is limited, because even the cooking smells of anything his body can't tolerate can cause a serious allergic reaction. The possibility of welts, internal and external hives, anaphylactic shock, grand mal seizures, pain.
She closely monitors and logs what goes into and what comes out of his 6-foot-2, 175-pound body.
She washes their clothes, dishes and bodies in lye soap, the old-fashioned cleaner made of pig lard and lye she orders from the Stuhr Museum in Grand Island.
She filters the air and water that runs through their home, with multiple, expensive machines, and lugs an air purifier when they have to venture outside the house, such as to a doctor's appointment.
She vacuums, a lot, and steam cleans the laminate floor in their house that was built specially to meet his needs.
She talks to him, and then listens to the few words he can say back to her, taking her joy from the small gestures of love he can show her.
Her time is his time. His father left long ago, when Brian was 9. They don't communicate. She explains it this way: He couldn't deal with his son's disability.
Her relatives don’t come around much either. Because of his allergies to many fragrances, visitors pose a danger with the smells of soaps, hair and laundry products they bring with them.
“Nobody wants to change, and nobody wants to reduce what they have to do just so we can be around,” she says. “This disability requires responsibility of others. That’s basically what it boils down to. People find it offensive when I tell them that what they have on is causing us harm.”
She doesn't feel comfortable leaving his care to anyone else, even for a few hours.
“I feel more content just to stay home and take care of my child. I know at least that he is getting the best of what is available to keep him safe.”
Brian has been diagnosed with myriad problems. Autism. Developmental disabilities. Multiple chemical sensitivities. Congestive heart failure. Food intolerances. Scoliosis. Ninety-seven allergies, many of them to fundamental substances found in food, medicines, including pain medications, and products people use every day.
But for the most part, Shaffer says, "he floats along pretty good, as long as he is not subjected to the things that we are told to avoid.”
* * *
In the basement of the Ashland home Shaffer had built to accommodate Brian's disabilities -- with nontoxic or the least toxic materials, special stairs -- are two photo collages, one of Brian and one of his brother, Curtis, who is grown and married, living and working in the Kansas City area.
Looking at Brian’s photos, if you didn't know what was brewing inside the body of the smiling toddler with soft brown hair, you'd think him quite normal.
"Oh, he was such a pretty baby. Such a pretty baby. Just darling," his mother says smiling at the boy in the blue onesie -- the first grandchild on both sides of the family -- propped on his mother's lap.
The mother sensed early on that something was not quite right with her son. He had to be resuscitated at delivery, and from the beginning, he avoided her face.
Mentally, he is still a young boy, in a man's body, lost by age 5 to the world of autism, a spectrum of disorders that impair development of social interaction, communication and behavior.
His hands move constantly, fingers flicking at the air. To relieve his anxiety, he chews on sheets, clothing, any piece of cloth he gets his hands on. He hums.
He is the boy in the bubble, but his bubble has its chinks.
* * *
Over the years, Shaffer has learned the ways of a warrior, enlisting the help of doctors, speech and occupational therapists, and other medical professionals in her fight. Only a few, she believes, have understood Brian and his special needs.
Today, she works with a small team of doctors and relies on alternative medicine to help relieve Brian's pain. She recently found a doctor in Kansas City who treats patients with autism and allergies. Under his care, she is seeing improvement. She has hope for the first time in a long time.
She also has sought help from the state.
In 2006, Shaffer, a licensed practical nurse, registered dietitian and licensed medical nutrition therapist, asked to be her son's paid caretaker, to be able to keep him safely at home.
State Sen. Cap Dierks agreed to introduce a bill (LB635) in 2007 that would provide financial compensation for care-giving family members. But the Department of Health and Human Services stepped in and offered -- in lieu of legislation -- to hire Shaffer as her son's primary caregiver and pay her 18 hours a day as a private-duty nurse.
The agreement continued for a few years, but after Dierks left office, it began to break down. When the department switched to a managed care company, she had to reapply to be his primary caregiver.
The department said she no longer could, by state law, be paid for her son's care. It censured Shaffer for practicing outside the scope of her professional license -- using acupuncture to relieve her son’s pain. It conducted a random audit of her medical license.
This year, the Legislature passed a bill (LB1083) clarifying that currently licensed nurses could be hired to provide care for family members.
But Shaffer has not received any payment for her son's care for more than a year, and he has received no other skilled nursing care from the state, despite doctor recommendations and appeals of the decision.
And this week, she learned that state managed care officials have decided they will not pay for the three appointments Brian has had with the Kansas City specialist, Dr. Jeremy Baptist, even though she was told by a worker in the referring physician’s office that Medicaid-managed care provider Coventry Health Care verbally preauthorized the visits.
Officials say state Medicaid funds can’t be paid outside Nebraska, even though it paid for lab work Baptist did with an Illinois laboratory.
Now, Shaffer could owe $3,900 she doesn’t have.
Recently, Omaha Sen. Bob Krist intervened on Shaffer's behalf, meeting with HHS chief executive officer Kerry Winterer, a representative from Coventry Health Care and a state Medicaid official.
They told him they had been working with Shaffer to try to get Brian services but have been unsuccessful, he said.
The bottom line, Krist said, is that the agreement was broken when the state changed its definition of medical necessity for Medicaid coverage. Since Brian doesn't meet the state's criteria, it will not pay for the type of treatment he needs, Krist said.
Medical necessity is defined as health care services and supplies that are medically appropriate and meet a list of criteria including being cost efficient, consistent with scientifically based guidelines, and required for means other than the convenience of the client or his or her physician.
None of the people making the decisions has ever met Brian or talked to his mother, Krist said.
He believes Brian to be among 3 percent of clients who don't fit normal medical necessity definitions.
"He is in critical need of critical care, and we can't give it to him because we can't fit him as a square peg into a round hole. And I'm appalled," Krist said.
If the state had to put him in an institution or hire someone else to care for him, it would cost a lot more money and could be life threatening to him, he said. As his paid caretaker for five years, and under Shaffer’s close supervision, Brian has avoided the trips to the hospital emergency room he used to have so frequently. And hospital and doctor visits have dropped dramatically.
In the end, Krist said, the state has agreed to look for options. But a lot depends on a hearing that will take place in January with state Medicaid Director Vivianne Chaumont to decide the medical necessity question.
With no income, Dee and Brian Shaffer are living off her retirement money.
“When it’s done, it’s done,” she said. “We’re facing the street then.”
But giving up is not an option.
“He has the right to his life. … So I will give everything I have for my son. Because his life is worth mine.”