DEPARTMENT OF HEALTH & HUMAN SERVICES

The Surgeon General of the
Public Health Service
Washington DC 20201

August 15, 1983

Vince L. Hutchins, M.D.
Director, Division of Maternal and

Child Health

Department of Health and Human Services
Parklawn Building, Room 6-05
5600 Fishers Lane
Rockville, Maryland 20857

Dear Dr. Hutchins:

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.


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  Recent reports have indicated that the actual prevalance 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
th.e. 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 occuring 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.

Ill. 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 Karyland 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.


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  In addition to these three projects, grants have been awarded to six
States, mlorado, Georgia, Hawaii, Illinois, Ohio, and Texas, to facilitate
the development of regionalized juvenile arthritis centers.  A grant has been
awalded 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 Center.

  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
cmated 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

resour-ze s.  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
matelials 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 mle in developing pn>grams;
(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.


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   In addition, a meeting was held on June 14, 1983 with the iiealth 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.


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  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 pattern6 foster or obstruct the development of individuals to
carry out these roles ; and (3) direction6 for enhanc,ing pediatric training in
the future.  The conference brought together individuals in leadership
positions in a variety of field6 who can contribute important perspective6 to
improving the &raining of pediatrician6 to deal with the need6 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 Foundation6 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 di6abilities 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 area6 are:
(1) basic biomedical; (2) clinical studies; (3) developmental and
psychosocial; (4) clinical epidemiology; and (5) health services. This study
stiggests that future research be conducted using a non-categorical approach
with ~~tidi6ciplin6~, collaborative, and longitudiM1 studies of the areas
of the interaction6 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 recommendation6
ire 'valuable and have stimulated activitie6 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.

Sincerely yours,

C. Everett Koop, M.D.
Surgeon General,