Helping Hand for ‘Fragile Children’ : New Mexico-Federal Program Eases Parents’ Burden

Mico Padilla was a baby when his parents noticed that he wasn’t growing and developing at a normal rate.

“I remember once when he was about 9 months old, I went to a laundry and a woman accused me of not feeding him,” said his mother,Elizabeth. “That used to happen a lot.”

Today, Mico--short for Dominico--is 13 years old. He weighs 32 pounds and stands a little more than 3 feet tall. His mental abilities are that of a 7- or 8-year-old.

Shortly before his fourth birthday, Mico was diagnosed as having chronic renal failure. Doctors determined that he was born with kidneys that failed to develop. His mother also said an aluminum-based medication doctors prescribed for Mico years ago was toxic to his system and invaded his bone and brain.

He also has fragile bones, an ulcer and suffers seizures. He has learning problems and his ulcer medication triggers side effects that impair his memory.

At one time, Mico’s bones were so fragile and caused him so much pain his parents could not hold him and had to lift him off his bed with a sheet.

For years, Elizabeth Padilla and her husband, Fabian, struggled to care for Mico themselves. With three other children and mounting medical bills, it was not easy.

Statewide Program

About two years ago, thanks to a statewide program for children with chronic life-threatening illnesses, the Padillas received a helping hand.

Mico is one of 30 children enrolled in the Medically Fragile Children’s Program, which enables families with chronically ill and developmentally disabled children to care for them at home.

The 2 1/2-year-old program, administered by the state Human Services Department, is funded 30% by state Medicaid and 70% by federal Medicaid.

Ibby Jeppson, chronic illness projects coordinator with the Assn. for the Care of Children’s Health in Washington, D.C., said the New Mexico program is unusual in that parents--not doctors or bureaucrats--were instrumental in its development, implementation and now its evaluation.

“New Mexico is also unique in that it has a very effective coalition of professionals, parents and legislators working on behalf of children,” she said.

The University of New Mexico Mental Health Center in Albuquerque provides the program’s case management through its developmental disabilities division. Four case managers--three nurses and a social worker--line up health-care providers, visit the families and help parents determine the type of care the child requires.

Mico was one of the first children enrolled in the program. Today, a home health aide spends three days a week caring for him at the family home in the rural hamlet of Tome, south of Albuquerque.

His parents say the program has provided them with a much-needed respite, easing their frustrations and freeing up time to spend with Mico’s older sister and two younger brothers.

It also has eased much of the financial burden.

Elizabeth Padilla estimates that Mico’s medical bills--including five bone operations in two years and two parathyroid operations in a year--totaled nearly $200,000.

A child enrolled in the Medically Fragile Children’s Program can receive up to $3,000 a month, and also becomes eligible for Medicaid, said program director Georgia Cleverley of Santa Fe.

Insurance Used

The program first makes use of parents’ insurance, Cleverley said. If the parents have no insurance or have exhausted their coverage, a special Medicaid provision pays for the child’s care.

“It costs about $15,000 a month to maintain a child in the hospital,” she said. “If we can maintain a child at home for $3,000 a month, it greatly reduces the cost to taxpayers.”

The program goes a step beyond physical care, also paying for medical supplies, family counseling, therapies and other services.

It provides Mico with physical and occupational therapy and buys round-trip air fare twice a year so Mico, accompanied by one of his parents, can be examined by a doctor at the UCLA Medical Center.

“The philosophy is that if we can take the child out of a hospital or institution and put him in his home with his family, then his quality of life, no matter how short it is, is vastly enhanced,” Cleverley said.

Dr. Stan Handmaker, an Albuquerque pediatrician and director of the UNM Mental Health Center developmental disabilities division, said the program’s benefits are two-fold.

“First, the family is able to provide care most of the time, but gets a respite,” he said. “Parents can do it up to a certain point, but sometimes they need time off to recharge their batteries.

“Second, it provides for a much more nurturing environment, rather than the child being away from the family in an institution-type environment. A lot of technological advances have kept children alive. Now what are we going to do? Are we going to keep the child in the hospital for the rest of his life?”

The program began at the grass-roots level when a young mother, Tammy West of Albuquerque, fought for government and private aid so her infant daughter could be cared for at home.

West’s daughter, Nicole, suffered from cerebral palsy, blindness and retardation, caused by a lack of oxygen at birth.

West and members of a statewide parents support group, Parents Reaching Out, took their cause to the Legislature and were successful in persuading legislators to launch the Medically Fragile Children’s Program.

Nicole died in 1983 at the age of 22 months, two years before the program was implemented in New Mexico.

10 More Children

This year, program staffers plan to ask the Legislature to allocate enough money so they can enroll 10 more children in the program.

Shelley Carter, who manages the program from her UNM office, said about 100 children in New Mexico are medically fragile--meaning that they have chronic life-threatening conditions, require an extraordinary amount of care and often are dependent upon technological devices to sustain their lives.

Children like Mico.

“It was very hard for us to find anybody to watch Mico in the daytime,” Padilla said. “There are not that many people willing to come over and take care of a kid like Mico. I saved 43 days of sick leave and I used just about all of them to take care of him when he didn’t feel good.”

After staying home for years and caring for Mico, his siblings and an ailing grandmother who has since died, Elizabeth Padilla, 39, began teaching special education at a Los Lunas elementary school.

Fabian Padilla, 38, quit his job teaching high school horticulture and agriculture last year to care for Mico, farm the family’s land and raise cattle.

“Without the program we’d have to find somebody to stay here and we’d both have to work,” Fabian Padilla said. “Things would have been different if we would have had this years ago. Definitely.”

The program provides either skilled nursing care, in which a registered nurse or a licensed practical nurse helps care for the child, or personal care, in which an attendant or an aide helps out.

More than 80% of the children enrolled in the program require skilled nursing care--someone who can administer medication, give oxygen, handle intravenous feeding, suctioning and tube feeding, Cleverley said.

An advisory board, chaired by West and made up of parents, doctors and federal health personnel, oversees the program.

Plan of Care

Once a child is accepted, a case manager helps develop a plan of care by discussing the child’s needs with the parents and the child’s health-care providers.

All those involved in that care--parents, nursing agencies, therapists, special education teachers, physicians and the case manager--together draw up and sign the plan.

The case managers visit the families at least once a month and talk with them on the phone regularly, sometimes daily.