Local Family A Casualty Of State Cutbacks

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It seems each day brings a new heart-wrenching story about people experiencing a severe health crisis and losing all or part of their insurance coverage.

The United States is one of only two developed countries in the world without some form of socialized medicine; the other is South Africa and that may have changed since the end of Apartheid.

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Cori Kendall (right) thumbs through letters from the county declaring what is deemed "not medically necessary" for the care of her son, Saxton. Nurse Debi Goldberg (left) has cared for Saxton for the last three-and-a-half years.

This leaves Americans to fend for themselves and falling through the cracks may mean a death sentence.

The Kendalls of Payson are one such family, and they are at the mercy of the Arizona Health Care Cost Containment System (AHCCCS) -- Arizona's Medicaid health care program. Their 9-year-old son, Saxton, is covered under the county's long-term care program.

Saxton suffers from a rare and little understood muscular disease called Neuro-fibro Muscular Disproportion. With very little muscle function, Saxton is completely dependent on machines to survive. He relies on a ventilator to assist him with breathing 24 hours a day. He is unable to walk or lift his arms above his shoulders, and is fed through a tube in his stomach called a "Mickey Button."

With her son confined to a wheelchair and respirator, Cori Kendall organizes her day around providing him with the 24-hour assistance he requires. Since she also helps her husband, George, run his moving and packing business, having assistance from a nurse and a certified nursing assistant has enabled the family to give Saxton the best possible care.

Nurse Debi Goldberg has cared for Saxton for the last three-and-a-half years. Goldberg works four 10-hour shifts, while the remaining days of the week are covered by nursing assistant Gladys Garner, who drives an hour each way from her home to care for Saxton.

Both women are not only health care providers, but Saxton's friends. Being housebound, Saxton has few opportunities to have social interaction with people outside his family. Goldberg and Garner spend hours interacting with Saxton, reading to him, playing games with him, assisting him with homework. The Kendalls believe this level of care has been crucial in Saxton's improvement and progress.

This assistance the Kendalls depend on is now in jeopardy. Cori recently received a form letter from AHCCCS Long-Term Care Headquarters in Florence, stating that the 30 hours provided by Garner, the nursing assistant, were "not medically necessary."

The Kendalls were stunned, but they've received these letters before.

Two previous letters declared this about a wooden tray that fits over the arms of the wheelchair, allowing Saxton a place to rest his arms, and the sterilized water used to clean the equipment. AHCCCS said they could boil water or add bleach.

"The county has sent us letters like this before, but no cuts as drastic as this," Cori said, "I don't understand how they could call the work that Gladys does ‘medically unnecessary?'"

According to AHCCCS, the definition of "medically necessary" is: a covered service provided by a physician or other licensed practitioner of the healing arts and within the scope of practice under state law to:

a. Prevent disease, disability, and other adverse health conditions or their progression; or

b. Prolong life

The Kendalls are adamant that Garner's 30 hours are, by definition, medically necessary. It is hard to believe otherwise when Cori describes a typical day of care for Saxton.

Unable to walk, Saxton must be bathed and dressed and taken to the "commode" several times a day.

"He has a very small bladder, and bowel problems, so sometimes he is there for up to two hours. He can fall right off so he has to be supervised," Cori said.

Beyond the personal attention and physical assistance Saxton requires, is the tremendous task of equipment upkeep.

"One hundred pieces need to be sterilized everyday or Saxton can get sick with pneumonia," Cori said.

Saxton's severe asthma and allergies require that his room and wheelchair be cleaned daily.

Throughout the day, Goldberg or Garner administer up to 16 medications to Saxton and give him breathing treatments for his asthma. Because he can't clear his throat, he gets "mucus plugs" in his trachea that must be suctioned out immediately or he could suffocate.

Then comes the feedings. Saxton is on a strict diet of pureed foods that are poured into a tube and enter his stomach through his Mickey Button. Cori allows him a little yogurt once a day "to give him an element of normalcy."

If Saxton leaves his home, his ventilator and oxygen must go with him. Cori must also have a suction machine in case Saxton gets a mucus plug while they're out.

"It requires two people because I can't drive and monitor Saxton, or suction him if he starts choking on mucus," she said.

When Goldberg and Garner leave, Cori and George begin their night duty.

"We have monitors around the house so we can hear Saxton. I get up several times a night to turn him and make sure his equipment is working," Cori said.

Many children as disabled as Saxton are institutionalized. Not long after their son was diagnosed in his first year of life, Cori and George Kendall were encouraged to consider placing him in "Los Niños," a facility for children such as Saxton.

"We could never do that. Saxton has made more progress than his physicians ever thought he would because of the care we give him. Doctors told us he would die or be retarded," Cori said.

"Lots of people put their kids in institutions -- those who don't have the drive or the patience to do it," George said. "But statistically, children do a lot better with the kind of care we give Saxton."

According to Cori, part of the problem is that Saxton's particular diagnosis puts him in a category of disability with the blind and other disabilities not requiring life support.

Goldberg agrees, saying that children with disabilities are often thrown "into a melting pot" rather than being looked at individually.

The Kendalls feel so passionately about losing Garner, they have decided to fight the county. They have filed a grievance with AHCCCS and hope that they will get the 30 hours of assistance back.

"We are tired of fighting with AHCCCS. We don't abuse the system and are tired of being penalized for caring for our son at home," a teary-eyed Cori said.

"I am a proud person," George said. "I don't like taking hand-outs, but we cannot afford Saxton's medical bills. I don't want to embarrass anyone, I just want what we need for our son. He's the one who will suffer the most."

The strain and exhaustion show on their faces, but their resolve for their son and each other remains strong.

"Only 5 percent of marriages last after the first year of caring for a disabled child. We just celebrated our 10th wedding anniversary," Cori said

As the Kendalls continue their battle with AHCCCS over the 30 hours of assistance from their beloved nursing assistants, they have one request: "Not one person from Gila/Pinal Long-Term Care has ever laid eyes on our son. We invite the doctors and administrators who are making decisions about him to come and meet Saxton and see what we do here," Cori said. "Maybe they'd change their minds about what is ‘medically unnecessary.'"

Someday, Cori hopes to spend more time advocating for families engaged in the same struggle to get adequate resources for the care of a disabled child.

Leisure time for Cori, is a long way off.

For now, she said, "we just want our 30 hours back."

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