Achieving and Measuring Success: A National Agenda for Children with Special
Health Care Needs
Provide and promote family-centered,
community-based, coordinated care for children with special health care
needs and to facilitate the development of community-based systems of
services for such children and their families.
Since 1989, this agenda has been the foundation
of State Title V programs for Children with Special Health Care Needs
(CSHCN). Endorsed by more than 70 professional and voluntary organizations,
the agenda calls for the development of systems of care for CSHCN that
are family-centered, community-based, coordinated and culturally competent.
Documenting and measuring systemic changes
in terms of meaningful indicators, however, has been challenging.
The long-term outcome of systems development
is that all families are able to access health and related services along
the continuum of care in a manner that is both affordable and meets their
needs; policies and programs are in place to guarantee that children have
access to quality
health care; providers are adequately trained; financing issues are equitably
addressed; and families play a pivotal role in how services are provided
to their children.
A long-term national goal was articulated
in Healthy People 2000: National Health Promotion and Disease Prevention
Objectives (also included in the 2010 edition) as follows:
Increase the proportion of states and territories
that have service systems for children with or at risk for chronic and
disabling conditions as required by Public Law 101-239.
Six Critical Indicators of Progress
Medical Home. Once identified, children with special health care needs require a medical
home: a source of ongoing routine health care in their community where
providers and families work as partners to meet the needs of children
and families. The medical home assists in the early
identification of special health care needs; provides ongoing primary
care; and coordinates with a broad range of other specialty, ancillary,
and related services.
Insurance Coverage. Families must
have a way to pay for services. The Childrens Health Insurance Program
(CHIP) has begun to address the issues of children who are uninsured,
but the problem of under insurance remains a major concern for CSHCN and
their families. In addition the range of wrap-around services needed by
families requires the availability of private and/or public health insurance
that covers a full range of needed services.
Screening. Infants and children with
high risk health conditions must be identified early in order to help
assure that they and their families receive the care and assistance to
prevent future morbidity and promote optimal development. Advances in
brain research, the Human Genome Project, and
increased effectiveness of early intervention have expanded our capacity
to identify children with special health care needs and offer an opportunity
for early intervention.
Organization of Services. In order
for services to be of value to CSHCN and their families, the system has
to be organized in such a way that needs can be identified, and services
provided in accessible and appropriate contexts, and that there is a family-friendly
mechanism to pay for them. Thus, effective organization of services is
a key indicator of systems development.
Families Roles. Families are the constants
in the child's life and are pivotal in making any system work. Family
members, including those representative of the culturally diverse communities
served, must have a meaningful, enduring, and leading role in the development
of systems at all levels of policy, programs, and practice. Family voices
must be heard and families should be at each table in which decision making
occurs. Thus, the involvement of families is a key indicator of systems
development.
Transition to Adulthood.
Youth with special health care needs, as adults, must be able to expect
good health care, employment with benefits, and independence. Appropriate
adult health care options must be available in the community and provided
within developmentally appropriate settings. Health care services must
not only be delivered in a family-centered manner, but must prepare individuals
to take charge of their own health care and to lead a productive life
as they choose. The broad definition of children with special health care
needs includes those who have or are at increased risk for chronic physical,
developmental, behavioral, or emotional conditions who require health
and related services of a type or amount beyond that required by children
generally.
Critical Indicators for Measuring
Success
in Achieving the National Agenda
The National Agenda for Children
with Special Health Care Needs builds on past experiences and success
to assure that policies and programs are in place to guarantee that:
- children have access to quality health
care services are coordinated
- providers are adequately trained
- financing issues are equitably addressed
- families play a pivotal role in how services
are provided to their children and
- children grow up healthy and ready to
work.
These changes must occur in ways that will
provide optimal outcomes for children with special heath care need and
their families. As the next step in the implementation of this agenda,
six national outcomes have been selected as critical to guide efforts
within the Division of Services for
Children with Special Health Care Needs.
Core Outcomes to be Achieved
- All children with special health care
needs will receive coordinated ongoing comprehensive care within a medical
home.
- All families of children with special
health care needs will have adequate private and/or public insurance
to pay for the services they need.
- All children will be screened early and
continuously for special health care needs.
- Services for children with special health
care needs and their families will be organized in ways that families
can use them easily.
- Families of children with special health
care needs will partner in decision making at all levels, and will be
satisfied with the services they receive.
- All youth with special health care needs
will receive the services necessary to make appropriate transitions
to adult health care, work, and independence.
A Call for Action
MCHB is once again asking all of
our partners to join us in a common effort to develop and improve community
based systems of care for children with special health care needs and
their families. As we work towards achieving these outcomes, each partner
in this collaborative effort can contribute uniquely to this agenda by
helping to document and measure success in the following ways.
Families:
We call upon families to be knowledgeable and effective users of health
and related services. Families, as the constants in their children's lives
are, critical informants with respect to whether a systems of services
is appropriate, accessible, affordable, acceptable and effective in meeting
their needs. As such, families of all types, cultures and socioeconomic
levels must be able to participate in all aspects and at all levels of
measuring the success of thais agenda. Effective family coalitions and
family/provider networks across the country have provided data about the
informational needs of families and their satisfaction with services,
as well as provided training to families around health care, financing
and advocacy.
Communities:
We call upon communities to assist states in documenting the degree to
which all children with special health care needs have access to a medical
home, including early and continuous screening; the degree to which services
are organized in ways that are appropriate, affordable, accessible, acceptable
and effective; and the degree to which families participate in all levels
of decision-making. Community coalitions have been formed to address issues
within the national agenda and they have been instrumental in helping
to develop measures and models of service systems that work collaboratively
with families. Communities now must help us by participating in collaborative
efforts to collect data on the six key indicators in ways that allow common
measurement across communities and enhance the ability of the state to
report progress on a statewide basis.
States:
We call upon states to continue to carry out their legislative responsibilities
to develop community systems of services, to provide or arrange for uncovered
services, and to measure progress in systems development. Through block
grant reporting, states can begin to document progress using the indicators
listed here. By partnering with a diverse variety of families, communities,
policy councils, providers, and others, states will ensure that systems
are truly responsive to all families and their priorities.
Service
Providers: We call upon service provider networks to assist in efforts
to document and evaluate the spectrum of existing systems of identification
and referral to help ensure that data systems are linked and coordinated
in ways that create more effective, technologically appropriate, and modern
methods for identifying children. Data systems need to be responsive to
the complex issues of confidentiality and privacy while preserving ways
to share data. As important partners in the service system, all providers,
including those in education, child care, and health, can provide important
information and data to document the range and the coordination of services
for families with children with special health care needs.
Managed
Care: Managed care entities are an important source of information with
respect to insurance coverage and costs, as well as the utilization and
types of services provided to families of children with special health
care needs. As with all service providers, linkages with other data systems,
confidentiality issues, early identification of children with special
health care needs within managed care settings, and provision of appropriate
care within a medical home needs to be documented within these settings.
Federal
Partners: In concert with families, federal partners must collect and
report on these six indicators, aggregating information from communities
and states across the country to help inform us of our progress as a nation.
The ongoing process of measuring progress in implementing the National
Agenda for CSHCN, by measuring our success in achieving intermediate outcomes,
and narrowing the gap between the vision and the reality, must be coordinated
at the national level.
Through collaborative action, we will be
better able to monitor our progress, communicate the value of our efforts,
and focus our limited resources on those activities that will best ensure
enduring systems of care for CSHCN and their families within the ever
changing health care environment.