'Technology-Dependent' Youths' Needs Unmet
WASHINGTON--The nation's health-insurance system is failing thousands of "technology dependent'' children whose medical needs tax the ability of parents, schools, and insurers to pay for them, a new Congressional study concludes.
The study is the first national examination of "medically fragile'' children--a small but growing population who survive through the use of expensive medical equipment or nursing services.
Such children would likely have had a short life expectancy 25 years ago, according to the report, but recent medical advances have enabled many of the more than 17,000 technology-dependent children nationwide to survive--and even to attend school--with the aid of ventilators, intravenous feeding, and other sophisticated medical devices and services.
The study was prepared by the Office of Technology Assessment, a nonpartisan research arm of the Congress. It was released last Thursday during a meeting of the Task Force on Technology Dependent Children, a panel created by the Congress last year after the case of a 3-year-old Iowa girl dependent on a ventilator came to national attention.
In that case, Katie Beckett, who had lived in a hospital since birth, could not go home to live with her parents because state and federal laws prohibited Medicaid from paying for less expensive, at-home nursing care. Her plight came to the attention of President Reagan, who cited it as an example of inefficiency and inflexibility in a government bureaucracy.
Of particular concern to teachers and school administrators, however, is the question of how to educate children such as Katie Beckett when they reach school age. (See Education Week, March 11, 1987.)
In the report, the growing problem is characterized as "almost an afterthought.'' The study points out that virtually no state or federal guidelines exist on how to provide for the medical needs of such children in school, who should pay for those services, and who is legally liable for ensuring that the children are properly cared for at school.
"A lack of resolution of these issues could needlessly prevent many technology-dependent children from attending school,'' the O.T.A. concludes.
The O.T.A. study adopts a narrow definition of the technology-dependent child. Children who require the use of urinary catheters, colostomy bags, or renal dialysis, for example, are not included. If the O.T.A. definition were expanded to include that group and others who need less frequent and less sophisticated medical services, the population would swell from 17,000 to more than 30,000, the report says.
But, even with such a narrow definition, the population of technology-dependent children has grown markedly in recent years. Experts say the number could continue to increase as a result of medical advances, the appearance of new severe chronic diseases, such as acquired immune deficiency syndrome, and a widening acceptance of "more aggressive'' medical techniques that save those who might otherwise die from disease, accidents, burns, or premature birth.
"The trend poses serious questions: How and where shall we care for these children, and who will pay for that care?'' said Representative Tom Tauke, the Iowa Republican in whose district Katie Beckett lives. He requested the O.T.A. study last year.
The families of technology-dependent children often exhaust the lifetime limits of their private insurance coverage--as much as $1 million, in some cases--in just a few years. And, when that occurs, they may be unable to buy the additional coverage they need for their "high risk'' children, according to the report.
In most states, the O.T.A. says, Medicaid can assume the child's medical costs only after the family has become impoverished.
Public and private insurance coverage is even more limited for children cared for at home, where the technology-dependent child might fare better, many parents and physicians contend. For example, Medicaid, in most states, does not routinely pay for full-time home nursing and other complex medical services, according to the report.
Since Katie Beckett's situation came to light in 1981, the federal government has changed its Medicaid regulations and now permits states to waive some rules on home care. However, some states have not made use of such options. And, in states where waivers exist, they are time-consuming to obtain, the report says.
"Consequently,'' the O.T.A. concludes, "some children have remained hospitalized even when their families are able to give them good, lower-cost care in the home.''
Because federal special-education laws have charged the schools with serving many of the children in this population, school systems may offer yet another way to pay for the medical services of technology-dependent children, according to the O.T.A.
The report addresses the role of schools in serving these children in a separate appendix, described by one O.T.A. researcher as "almost an afterthought'' to the report's central discussion of insurance coverage.
However, in discussing the schools' role, the authors predict that the growing presence of technology-dependent children in the schools may lead to some legal and emotional battles.
"Public schools, pressed for funds, may often be reluctant to pay for additional full-time nurses and special transportation vehicles and to assume legal liability for medical care during school hours,'' the report says. Public and private insurers, meanwhile, may increasingly look to shift more of the financial burden for such services to the schools.
In the end, the O.T.A. says, schools may resort to "giving these children occasional home visits to avoid the extraordinary nursing costs and potential lawsuits''--an alternative that the O.T.A. implies is inadequate.
Currently, 13 of the 50 states surveyed by the researchers have no written guidelines on providing such services in the schools. An additional 13 states provide guidelines only for administering medications to students, and 18 states have guidelines covering some, but not all, medical services for their technology-dependent students. Only 6 states had guidelines for every service such students might require, the report says.
"Clear federal and state policies on this issue could greatly aid in minimizing total costs, encouraging education in the environment most appropriate to the individual children ... and preventing the emotional and financial stress of legal battles,'' the report concludes.
Copies of the report, "Technology-Dependent Children: Hospital v. Home Care,'' are available for $4.75 each by writing the Superintendent of Documents, U.S. Government Printing Office, Washington, D.C. 20402; or by calling (202) 783-3238. The G.P.O. stock number is 052-003-01065-8.