Sara Rosenbaum, policy director for the Childrens Defense Fund, has said, "Nobody, but nobody, understood quite how large the need for long-term care was." She could have been referring to the case of Patrick Jones, 14 months old, of Monrovia, Calif., born three months prematurely, weighing 2 lbs. 6 oz.
"He's hydrocephalic, but without needing a shunt so far. He has bronchial-pulmonary distress -- dysplasia -- and needs 24-hour oxygen and suction by a machine and breathing treatments," said his mother, Mona Petersen. "Patrick also feeds through a tube in his stomach."
"Who would have known a situation like this would have happened? I was overwhelmed," said his mother, who has three other children with no special health problems.
Yet, she said, Patrick is mentally normal. With luck and good treatment for the next two or three years, he could eventually outgrow most of his problems, except for severe asthma which will require lifelong treatment.
Patrick has been under treatment as an in-patient at Huntington Memorial Hospital for all but 14 days of his life, at a cost of "at least $600 a day," Petersen said, which works out to over $200,000 so far.
To pay for such treatment, Petersen, a divorced woman, would have to be a millionairess or have the best gold-plated health-insurance a generous employer could provide. But her income is about $12,000 and she does not have private health insurance. Luckily for the family, there is Medicaid, called Medi-Cal in California. Medi-Cal has been paying the bills and will continue to do so. State officials say Medi-Cal outlays of this type for children in Patrick's condition are not uncommon.
Petersen wants to move Patrick home and have Medi-Cal help pay for care there, which would also cost similar amounts. With the aid of Marilyn Holle of Protection and Advocacy, Inc., a publicly funded agency for persons with various types of disabilities, she is trying to force the state to allow that. Medicaid rules -- mindful of the costs of extending coverage to large numbers of persons already being cared for at home -- generally favor paying for such cases if the patient is in an institution but not at home. "He needs siblings, he needs to bond with a mother who lives him dearly . . . We're not going to lose him," said Petersen. Subhed Here Another California child with severe disabilities, identified only as Sarah (officials are not free to make the family name public) has been cared for at a rehabilitation hospital in Los Angeles for seven years, since soon after birth, for a crippling muscular condition that left her unable to walk, feed herself or use the bathroom by herself. Yet she is bright, able to talk, can move her fingers and could perform intellectual tasks using a computer keyboard. The cost there is also about $500 or $600 a day, or $180,000 a year for seven years so far.
"We support cases like this in many rehab hospitals," said Frank De Bernardi, Medi-Cal chief of field services. And "we've got about 85 cases statewide being cared for at home" under special rules -- children severely damaged in driving accidents, diving accidents, needing ventilators to breathe, having ALS (Lou Gehrig's Disease) or multiple sclerosis. "Some of these children are taken care of for several years at $500 a day," which amounts to over $180,000 a year. Even so, they usually die young.
Another Medicaid case, typical for disabled and older people, involves long-term nursing home care for Gerry Nichols of Cincinnati, 50, severely disabled in a plane accident and then an auto accident, for whom the state of Ohio pays about $20,000 a year for a nursing home, according to Gregory French, director of Pro Seniors, an advocacy group for older persons.
In Maryland, five typical Medicaid long-term nursing home-cases in Montgomery, Baltimore and Anne Arundel Counties, involving physical or mental disabilities and illness, have cost the state over the past two years, respectively, $44,977, $45,912, $36,904, $36,615 and $32,367, for nursing home and related medical and pharmacy costs. "Our average cost for a day in a nursing home is $58 -- $1,600 a month," said Nelson Sabatini, deputy secretary of the Maryland Department of Health and Mental Hygiene. He said that of state outlays of $1.2 billion for Medicaid, about 30 percent goes for nursing homes and 40 percent for inpatient hospital costs but "a lot of that is for the same kind of people."