Next week, in Macomb County, Mich., a group of school officials and parents will sit down to decide how to educate an 8-year-old boy who is unable to move his arms and legs or breathe without regular cleaning of his trachea.
The survivor of a near drowning, the boy is at the center of a dilemma for the Macomb County schools that tests not only the limits of federal laws protecting the handicapped, but also the district’s technical and financial capacity to carry them out.
And, like his “medically fragile’’ counterparts in classrooms across the nation, the Michigan boy’s fate may rest ultimately with the answer to a question posed by one special-education consultant to the state’s education department: “Where does educational responsibility begin and medical responsibility end?’'
That question, said Foster J. Eid, is being asked with increasing frequency, as schools are called on to serve a growing number of pupils labeled “medically fragile,’' “chronically ill,’' or “children with complex medical needs.’'
Some simply need a companion to watch out for them as they walk down the hall. Others must carry respirators, or come to class on gurneys.
“When the handicapped-education laws were written 10 years ago, I don’t think anybody imagined that we’d have kids with this kind of machinery showing up at the school door,’' said a federal special-education official.
But showing up they are, bringing with them a new set of unclearly defined responsibilities for school administrators.
According to those familiar with the Macomb County case, the participants at next week’s special-education hearing are likely to argue over the best way to transport the boy to school, the school’s liability for any medical complications resulting from its care, and responsibility for paying the attendant needed to suction his tracheostomy tube.
“If we’re ever sued for liability on this,’' said Robert Wilson, the district’s assistant superintendent for special education, “it’s going to be for not doing it right, and not for doing it at all.’'
According to some, however, the “medically fragile’’ are children for whom traditional programs--whether basic educational services, special education, or home tutoring--may not be enough.
Finding a solution that addresses the legal, medical, and educational quesions involved in such children’s schooling, special educators say, may await greater public awareness of the scope of the problem.
In the absence of any data collection on the national level, no one has produced a reliable estimate of the number of “medically fragile’’ children, experts say.
Ten years ago, they say, many of these children would not have survived the car accidents, premature births, or catastrophic illnesses that led to their condition. But advances in medical technology have helped save the lives of such children, the experts note, and, in many cases, have enabled them to lead a nearly normal existence.
Moreover, they add, children who survived with serious impairments a decade ago were often kept at home or placed in institutions.
“For years, you’d see a child who needed a respirator 24 hours a day and never imagine that child in school,’' said David E. Greenburg, president of the Council of Administrators of Special Education, at a meeting last month. CASE, a division of the Council for Exceptional Children, is addressing the problem of providing medically related services to children in a series of seminars across the country.
In recent decades, Mr. Greenburg said, two trends have combined to move medically fragile children out of the hospitals and into the classrooms.
First, he said, beginning in the 1970’s, medical and mental-health-care professionals began to promote the “deinstitutionalization’’ of patients who were considered able to function outside medical facilities.
On the heels of that movement, he said, came the federal mandate to “mainstream’’ handicapped children and place them in the “least restrictive’’ educational environment possible.
In addition, he said, the financial incentives in the Education of the Handicapped Amendments Act, P.L. 99-457, passed last fall, have provided the federal government with the leverage needed to persuade states to serve handicapped children from infancy onward. (See Education Week, September 24, 1986.)
Special educators at a recent CASE conference predicted that this federal mandate to serve handicapped infants and preschoolers--a group thought to include a disproportionate number of “medically fragile’’ children--would push the issue to the forefront, providing some answers to questions that have become increasingly troubling to educators.
To Serve Or Not?
Though some argue that the schools’ responsibility to provide medically related services is unclear at best, some school officials across the country say they have “bent over backwards’’ to accommodate “medically fragile’’ children.
At a CASE seminar last month in Tampa, Fla., for example, a group of special educators from Albuquerque, N.M., described a program in that city’s public schools that provides comprehensive services for between 700 and 800 medically fragile, profoundly retarded, and emotionally disturbed children.
The district operates the program at 12 school sites, each staffed by a teacher, one or two aides, and a nurse. In addition, a staff of 40 occupational and physical therapists provides assistance at all program sites.
Some of the children enrolled in the program have to be fed through tubes, according to Nadynne Myers, a diagnostic coordinator in the schools. Others, suffering from heart problems, must be monitored by an aide at recess. Aides also clean tracheal tubes for students, she said, and burn victims and children with muscular dystrophy are among their students.
“We probably see more children with syndromes than most pediatricians do in a lifetime of practice,’' Ms. Myers said. Unlike programs in most school systems, the Albuquerque program is financed almost entirely by the state, at a basic funding level of $500 per pupil and $1,200 per pupil for each additional service performed.
In Montgomery County, Md., the schools have hired an aide to walk a girl with “brittle bone’’ disease to her classes and make sure that other children do not bump into her, said Thomas O’Toole, director of special-education programs there. In all, he said, the school system provides special medically related services to “about a half dozen’’ youngsters.
“I think special-education administrators are saying, ‘Yes, all kids should be able to go to school,’'' said Mr. O’Toole.
But, in the courts, as well as in non-legal disputes with parents, many school officials are resisting the pressure to provide medically related services to such children.
“I guess we happen to think schools have gone too far in the medical world,’' said Mr. Wilson of the Macomb County, Mich., school system.
“We’re not sure it’s our duty to do this,’' he said, referring to the case of the eight-year-old boy whose tracheostomy tube must be cleaned almost around the clock by a trained attendant.
If the district ends up providing such service, he said, it will be doing it at the order of a state-level hearing officer or a judge.
The courts and federal law have been relatively consistent in ruling that schools have some legal obligation to provide some medically related services to handicapped children, according to Stephen B. Thomas, a professor of education law at Kent State University.
The landmark decision on that question came in 1984 when the U.S. Supreme Court decided that Texas’s Irving Independent School District had to provide clean, intermittent catheterization to Amber Tatro, a child suffering from spina bifida. (See Education Week, August 22, 1984.)
In that case, the Court held that catheterization was not a “medical’’ service under federal laws governing the education of the handicapped. The primary federal statute--the Education For All Handicapped Children Act, P.L. 94-142--requires schools to provide medical services only for “diagnostic and evaluative purposes,’' not for maintenance.
Catheterization, the Court said, was a “health-related’’ service “that was necessary to aid a handicapped child to benefit from special education.’'
The distinction between health-related services needed to benefit from education and medical services needed to maintain functioning, however, has been blurred in several lower-court decisions.
In one case, for example, a court held that providing the services of a nurse to administer medication to a child through a section of the small intestine and disperse a saline solution into the lungs was a “medical service,’' and thus not the school’s responsibility.
But, the confusion has come, according to educators, when children not legally defined as handicapped have needed special medical services to attend school.
Such a case, said Mr. Thomas, reached the U.S. circuit court in Hawaii in 1984. It involved a student who needed to have her tracheostomy tubes cleaned during the day so that she could attend regularclasses. The court ordered the state education department to serve the child.
“When any child reaches a point where he has chronic absences, you have to agree that the child’s health condition is impairing his educational status,’' Mr. Greenburg of CASE said. “Then, I think you would have to agree that the child is indeed handicapped.’'
Paying For Services
The primary reason for some school officials’ reluctance to serve these children is the great expense of doing so. An attendant, for example, may cost a school system $13,000. More specialized help is even more costly.
“People are scared to death,’' said Naomi Karp, a program specialist for the U.S. Education Department’s national institute on disabilities and rehabilitation research. “All they see is dollar signs. They don’t think of the children.’'
To ease the fear, the Trans-Allied Medical Educational Services Inc. was founded in 1982. Owned by 55 schools in Flossmoor, Ill., the nonprofit organization processes and tracks insurance claims made by schools against a parent’s insurer or Medicaid.
In order to help pay for a physical therapist, for example, a school district would, through TAMES, file a claim with the insurance company of the student’s parents. If the company pays only 80 percent of the cost, the district, rather than the parents, would pay the remainder.
According to Marvin Roelofs, one of the group’s founders, consortium members have used the service to pay for audiologists, psychotherapists, physical therapists and numerous other services--at average savings of 30 to 60 percent.
TAMES was among the first such services to be formed, and is currently helping set up a similar system in four Pennsylvania school districts.
“The biggest difficulty we have is convincing educational systems that it’s O.K. for them to get into the claim-processing business,’' said Mr. Roelefs.
“The insurance carriers say: ‘We knew this was coming. What took you so long?’''
In addition, Mr. Greenburg said schools were beginning to learn that Medicaid--the federal health-insurance program for low-income patients--can help pay for a number of these services.
Such procedural maneuvers are new to school administrators, who, according to Mr. Greenburg, are still struggling with the question of whether to allow “medically fragile’’ children into their classrooms. But, he added, schools have “come a long way in realizing the kinds of services that can be provided.’'
What is needed now, Ms. Karp said, is for “somebody to bite the bullet and say, ‘Yeah, this is a population we have to serve and let’s sit down and do it.’'
A version of this article appeared in the March 11, 1987 edition of Education Week as Medically Fragile Students Pose Dilemma for School Officials