By Virginia Fuller, R.N. This article originally appeared in 'Caring' magazine, Vol. XIV, No. 2, Summer 1998

In this tumultuous time of restructuring of health care facilities, very little attention is given to the need of long-term care for medically fragile children. While managed care, subacute care, and home care are generally all seen as viable and cost-effective alternatives to controlling the unacceptable cost of extended acute care, these alternatives are not viable for this group of children. State and federal government bodies have not addressed the needs of this small group of health care recipients, and unfortunately the children cannot fit into the systems that have been addressed. Nursing homes as a rule don't accept children because they specialize in geriatrics and not pediatrics.

Certainly each of the current alternatives to acute care make sense in that there must be health care settings in which the long-term medical and nursing needs of children can be met in a cost-effective fashion, however, these alternatives don't address the special needs of this small group. Both managed care and subacute care presume that the recipient can be cared for in a setting outside of the acute hospital more cost effectively. The fallacy in this presumption is simply, where will that be? home care presumes that, with support, parents can care for these children at home but fails to take into account the fact that many of these either have no parents at home or have parents who are not capable of providing the level of care that must be given. Subacute care does not provide long-term care indefinitely.

Michael is a crack baby born with multiple medical problems necessitating no less than five surgeries in his first two years of life. Michael at three is still unable to eat due to esophageal anomalies and is fed by a gastrostomy tube. Although his colostomy may be closed at some time in the future, he currently uses an appliance that others must change for him periodically. Michael doesn't walk and, unfortunately, may never do so as a result of the contractures formed during his first two years. Michael also doesn't talk, although he does display an interest and curiosity in his surroundings, and there has been some evidence with the noises that he makes that he has a definite interest in making his needs known.

Tamika is not as fortunate. The post-arrest anoxia that she suffered at birth has left her in a persistent vegetative state with little indication that she will improve. Frequent bouts of pneumonia and uncontrolled seizures makes one wonder how she managed to survive these first eighteen months. Her daily routine consists of frequent suctioning to prevent aspiration pneumonia and passive range of motion (PROM) to prevent contractures.

Malehka is a fourteen year-old albino with normal intelligence, but she has severe degenerative juvenile rheumatoid arthritis that requires close medical supervision because of the medications she is now on. She needs daily PROM and weekly physical therapy to slow down her disease process.

Where Are These Children?

Michael and Tamika, unfortunately, are still at the State Development Center. Although identified among the group that the legislature has mandated must be placed in the community, they simply have nowhere to go. Malehka has bounced around in the foster care system for a while, but because foster parents and group homes could not meet her medical demands, she is back at home exposed to neglect and both physical and sexual abuse.

Who Will Care for These Children?

In California in 1991, regulations were drafted for a new category of health care facility: Intermediate Care Facility for the Developmentally Disabled-Nursing (ICF/DD-N). The draft regulations generated much excitement, with the expectation that a specific category of health care facility was being defined that would address the need for nursing care of medically fragile children.

The regulations were adopted but were unfortunately rescinded just as quickly, leaving the small group of facilities that have been licensed as ICF/DD-N in limbo and the larger group of clients with no place to go.

Perhaps California's effort should be applauded in recognition of the need for specialized services, and indeed, specialized facilities for meeting the needs of these children. Unfortunately, the lack of progress in the years since, as well as the assumptions inherent in the promulgation of the ICF/DD-N regulations has in all likelihood done more harm than good. In planning to meet the special needs of these children, one must first look at the level of cared anticipated. By definition, the medically fragile children are in need of professional nursing support for chronic conditions. Most of the children have distinct and complicated nursing needs. These needs do not fit into the definition of intermediate care, which is identified as care requiring skilled nursing and supportive care on a less-than-continuous basis. These children need care on a continuous basis, not only because of their medical status, but because of their age.

The ICF/DD-N classification further identifies this type of facility as for the developmentally disabled (defined as a person with a disability attributable to mental retardation, cerebral palsy, epilepsy, or other neurologically handicapping condition.) Although this definition does fit some of these children in that they often have a disability attributable to a "neurologically handicapping condition", the presumption that needed services are typical of those required to treat mental retardation are false.

By classifying the needs of this select group of children as both "of intermediate level of care" and "for the developmentally disabled". California has created a bias against the main issue: caring for all medically fragile patients in an appropriate setting. Definition as intermediate care restricts the funding for nursing care to an unacceptably low level. Intermediate care facilities can be certified only for the Medicaid program, resulting in a set fee reimbursement rate. This situation does not provide the flexibility needed to ensure that the needs of the children can be met cost effectively, which would encourage private entrepreneurs with medical/nursing backgrounds to fill this void in many communities. As well, identification as developmentally disabled defines the children as clients of the State Department of Developmental Disabilities (DDS) and compartmentalizes them into a rehabilitation program that may or may not be indicated.

This classification also adds a layer of regulations to those already imposed by the Department of Health Services Licensing and Certification that many prospective providers have found impossible to meet. In addition, it denies funding to many medically fragile children who are not necessarily developmentally disabled because the California Code of Regulation (TItle22, Section 51343.1 and 51343.2) stipulates that Medi-Cal will reimburse the provider for his/her services only if the patient/client meets the following criteria:

a) he or she must be developmentally retarded, b)he or she must have a medical condition that requires skilled nursing care, c) he or she must be evaluated and approved for authorization by a Regional Center. Regional Centers are private prime contractors of DDS who - with no apparent accountability to a higher authority - have jurisdiction to serve DD clients in their designated county/counties. The Law is exclusionary and discriminates against children who do not suffer from mental retardation, but need care just as badly. Additionally, this law gives a private enterprise a monopoly; in other words, they have the power to decide which providers will participate in this program (regardless of credentials, qualifications and current licensure) and which children will receive this highly sought after service.

The acute care hospitals and the state institutions remain burdened by retention of these children whose needs they are poorly suited to meet. Yet there is no alternative. More than ever, this is a time for collaboration. If the problem of caring for these medically fragile children is to be solved, the providers and the regulatory agencies must work together to find a solution. That ICF is not an appropriate level of care and DD is not an appropriate classification has become obvious with the impasse of the past seven years. Subacute care would seem to be an appropriate category based upon the needs of these children, yet subacute remains to be defined. Without a doubt, a new category of facility must be defined that encompasses the cost effectiveness of long-term care, yet recognizes the special needs of the children.