The purpose of this correspondence is to inform you of the activities that have taken place with regard to the recommendations
emanating from the Surgeon General's Workshop on Children with Handicaps and Their Families, convened in Philadelphia
on December 13 and 14, 1982.
Workshop participants recommended that steps be taken to: (1) define the
scope of the problem; (2) develop model standards; (3) develop systems of
regionalized care; (4) improve financing of care; (5) identify areas of abuse potential; (6) incorporate into training curricula
principles of care for children with disabilities; and (7) support research in the care of children with disabilities.
These recommendations are congruent with the existing policies, programs, and
activities of the Public Health Service (PHS). The Division of Maternal and Child Health (DMCH) is the unit responsible for
monitoring, encouraging, supporting, and evaluating the PHS activities in collaboration with other agencies in both the public
and private sector that address the seven recommendations of the Workshop. These activities are summarized here for your information.
I. Defining the Scope of the Problem
The publication and dissemination of the Surgeon General's Workshop report in February and the National Conference on
Chronic Illnesses in Children held in April by the Vanderbilt University Institute for Public Policy Studies have increased
the public awareness of the scope of the problem of children with handicapping and chronic conditions. While the prevalence
of individual disorders is generally known, prior to the Workshop there was little information available regarding the ventilator-dependent
child. The Workshop stimulated a study in Illinois by the Crippled Children's Services (CCS) Program on the number of
these children living in hospitals or at home. Based upon responses from 86 percent of the hospitals contacted, more than
120 children had required ventilator support for at least four weeks during the previous 12 months. Another 18 children had
been discharged to home ventilator support. Pennsylvania is the only other State known to have this
type of information.
Recent reports have indicated that the actual prevalence of chronic illness has been increasing over the last 20 years. Although
several theories have been suggested for this phenomenon, the reasons for the growing number of babies born with some physical
or mental defect is not known. A study being conducted by the Health Policy Program of the University of California at San
Francisco is currently investigating the increase over the last 25 years in the number of days of limited activity by children.
The DMCH is currently making plans to convene a panel in September to
further investigate the epidemiology of handicapping and chronic conditions of young children.
II. Developing Model Standards
This recommendation emphasized the need to develop models and standards that would be innovative, focus on the needs of the
family, and reflect concern for the quality of life for each disabled child. In keeping with the spirit of the recommendation,
two grants have been awarded to Iowa and Michigan. The Iowa project will investigate and analyze the variety of interactions
occurring between health care professionals and children with disabilities, in order to: (1) determine an organizational framework
to define those individual health care interactions; (2) determine principles of care to act as guidelines for those interactions;
(3) delineate standards to guide the delivery of specific health care services for children with
disabilities; and (4) publish and disseminate the results. The Michigan program, focusing on children with diabetes, will
establish standards of care and develop a regionalized community health support system involving providers, voluntary and
State agencies and the Maternal and Child Health (MCH) Services Block Grant mechanisms.
III. Developing Systems of Regionalized Care
Three grants have been approved to develop systems of regionalized care
with a focus on ventilator-dependent children. These grants have been awarded to Illinois, Louisiana, and Maryland. The intent
of all three projects is to transfer children from institutional settings to home or homelike settings through the use of
multidisciplinary teams. The Maryland project, for example, will combine existing local, State and regional organizations
to establish a private, non-profit organization to facilitate the discharge of ventilator-dependent children. All three projects
focus on the need to develop and sustain a community-based support system. The projects are concerned with comprehensiveness,
continuity of care and cost effectiveness. These projects will also help define the scope of the problem by providing new
data on the numbers of children with this problem. We should learn also about some of the long-term consequences on children
and their families.
In addition to these three projects, grants have been awarded to six States, Colorado, Georgia, Hawaii, Illinois, Ohio, and
Texas, to facilitate the development of regionalized juvenile arthritis centers. A grant has been awarded to New York to develop
a system of data collection and coordination of care and services to children with chronic illnesses in selected regions of
the State. This system will then be replicated throughout the State in an effort to provide comprehensive, cost-effective
services with followup care for all chronically ill children.
A work conference on interagency collaboration was held in June to share
expertise around common issues and problems related to improving the quality
of life for handicapped children and their families. This conference was sponsored jointly by the Department of Education
and the Department of Health and Human Services and coordinated by the Georgetown University Medical Center's Child Development
The conference was an outgrowth of three interagency collaboration projects that were funded at the Federal level by the Headstart
Bureau, the Special Education Program (SEP), and DMCH to stimulate State support for local collaborative activities between
health, education, and social service organizations.
In Iowa, a new type of integrated evaluation and planning clinic was created and became the model for community teams using
public and private resources from health, education, and other agencies.
These grants reflect the intent of the third recommendation: to match the needs of disabled children with available resources
in order to develop a system of care that addresses the social, educational, and health issues facing families of children
with chronic handicapping conditions.
IV. Improving financing of Care
While all seven recommendations from the Workshop are important, the issue
of improving financing of care for children with disabilities is critical in order to assure that the needs of children can
be met in the face of limited resources. To this end, a workshop on the financing of health care was held May 11-13, 1983
in Washington. The purpose of the workshop was to develop materials for the State Directors of MCH and CCS to enable better
use of resources in providing for and financing health care of handicapped children. There were three stated objectives: (1)
to provide a basis for State CCS programs to use in reviewing their leadership role in developing programs; (2) to identify
problems with gaps in coverage from third party payers and to define ways to increase coverage to improve the extent and quality
of services ; and (3) to define creative and innovative ways to improve the availability of care and services from all sources.
A report on the outcome of this workshop is in press and will be available later this year.
In addition, a meeting was held on June 14, 1983 with the Health Care
Financing Administration to discuss the following: (1) reimbursement for
ambulatory care of patients with chronic diseases; (2) reimbursement of
comprehensive evaluations; (3) psychosocial problems that are not addressed by reimbursement mechanisms; and (4) the need
for a better understanding about and reimbursement for care at home. These issue areas were developed as a result of the
past success of the hemophilia program which is based on the idea of ambulatory care and are useful as examples of improved
patient outcome, and reductions of inpatient admission, length of hospital stay and total health care costs. The financing
of health care for handicapped children and those with chronic conditions continues to be a concern of the Administration.
V. Identifying Areas of Abuse Potential
This recommendation calls for the elimination of unnecessary, duplicated or inappropriate services to assure quality care
and to control costs. These issues have been addressed to some degree in the grants mentioned earlier dealing with the development
of model standards and regionalization of care. It is important to note that increased utilization of either services or products
does not necessarily indicate abuse. In the case of self infusion, for example, under the hemophilia program of ambulatory
care, the use of blood products has increased. Comprehensive care is presented as controlled care in which both children
and their parents must qualify through psychosocial screening and training in self infusion. Blood product is prescribed
only if a log of usage is accurately maintained at home and reviewed periodically by program staff. In this instance, the
potential for abuse is reduced through monitoring by qualified professionals, and by the development of standards of care
while continuing to provide children and their parents with Information and optimal services. This model from the hemophilia
program will be useful in the development of other programs for ambulatory care to prevent potential abuse.
VI. Incorporating Principles of Care for Children with Disabilities Into Training Curricula
On June 27, 1983, an ad-hoc committee was convened to further the development of collaborative efforts between DMCII and SEP
to determine the needs in providing training for professionals and parents with the focus on children in the O-3 age range
with discernible handicapping conditions. Participants included pediatricians, obstetricians, neonatologists, perinatologists,
special educators, parent advocates, and media specialists.
The DMCH has awarded a grant to the National Center for Clinical Infant Programs for a project designed to assist 10 selected
States in their efforts to improve services for at-risk and disabled children and their parents in the first three years of
life. This project (Project Zero to Three) will use meetings, consultations, technical assistance, and consensus building
as tools to begin construction of a framework for knowledge sharing.
A conference, "Education of Pediatricians for the Ongoing Care of Children
with Special Health Needs," was held in New York, July 26-28, 1983. Small
working groups examined the role of the pediatrician with respect to: (1) the
care needs of children with special health problems; (2) ways in which current educational patterns foster or obstruct the
development of individuals to carry out these roles; and (3) directions for enhancing pediatric training in the future. The
conference brought together individuals in leadership positions in a variety of fields who can contribute important perspectives
to improving the training of pediatricians to deal with the needs of this population. A summary statement from the conference
will be available in early Fall. In addition to participants, the statement will be sent to Chairmen of all Pediatric Departments,
selected Foundations and other interested parties.
At the present time, grants are being reviewed in DMCH in the area of continuing education. The call for these grants emphasized
the need for the incorporation of principles of care for children with disabilities into training curricula.
VII. Supporting Research in the Care of Children with Disabilities
In keeping with the intent of this recommendation, the Vanderbilt University Study identified five broad areas of research.
These areas are: (1) basic biomedical; (2) clinical studies; (3) developmental and psychosocial; (4) clinical epidemiology;
and (5) health services. This study suggests that future research be conducted using a non-categorical approach with multidisciplinary,
collaborative, and longitudinal studies of the areas of the interaction between these five research areas.
A more detailed description of these activities will be included in the one year followup report to participants. It is clear
that the recommendations are valuable and have stimulated activities in program development and policy discussion to improve
the quality of care and services to children with chronic and handicapping conditions and their families.
Thank you for the part you have played in the planning of the Workshop and
the formulation of these recommendations. I look forward to your continued
participation in this important endeavor.