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Children
and Youth with Special Health Care Needs
 Purpose
of the Project
The National
Center for Cultural Competence (NCCC) has a project dedicated
to children and youth with special health needs and their
families. The purpose of the Children & Youth with Special
Health Care Needs (CYSHCN) Project is to assist state Title
V Maternal and Child Health and CSHCN programs to design,
implement and evaluate culturally and linguistically competent
service delivery and support systems.
The project
is funded by the Division of Services for Children with Special
Health Care Needs (DSCSHCN), Maternal and Child Health Bureau
(MCHB), Health Resources and Services Administration (HRSA),
U.S. Department of Health & Human Services, (DHHS).
The work
of the project is within the context of the Healthy People
2010 goal 16-23: Increase the proportion of territories and
states that have service systems for children with special
health care needs. Six core outcomes, developed by MCHB and
a broad range of key stakeholders, are used to measure progress
toward this goal and to address barriers to community living
consistent with the President's
New Freedom Initiative.
The New
Freedom Initiative charges the HRSA's MCHB with developing
and implementing a plan to achieve appropriate community-based
systems for children and youth with special health care needs
and their families (as specified in "Delivering on the Promise" under Solution
III. C, New Freedom Initiative).
Specific
barriers for children and youth with special health care
needs that need to be addressed include access to: (1) comprehensive,
family-centered care; (2) affordable insurance; (3) early
and continuous screening for special health care needs, and
(4) transition services to adulthood.
Families
of children and youth with special health care needs are
often impacted by the complexity and organization of services
which influences access and satisfaction with services received.
Inherent in this Healthy People 2010 goal and New Freedom
Initiative is the need for service delivery and support systems
to be culturally and linguistically competent. A special
focus on family and youth perspectives is
featured on this
page.
Goals of the Project
Under the current cooperative agreement, in consultation with
the federal MCHB, the NCCC's CYSHCN Project has the following
goals:
- To incorporate cultural and linguistic competency into strategies
to implement, measure and monitor the six core outcomes for
community based system of services for children and youth with
special health care needs and their families. in achieving
the Health People 2010 goal, and carry out the New Freedom
Initiative Plan.
- To assist the state Title V CSHCN programs and MCHB discretionary
grantees fulfill the vision of MCHB that:
- there is equal access for all to quality health care
in a supportive, culturally competent environment, which
is family- centered and community-based;
- health disparities by racial, ethnic and economic status
will be eliminated; and
- MCH/public
health agencies will exemplify the highest standards
of excellence by employing a highly qualified,
diverse workforce; and providing a respectful and supportive
work environment.
What
We Do
The CYSHCN Project conducts a number of ongoing activities to
meet its goals including:
- Networking and information exchange among state MCH and CSHCN
directors, regional consultants and related constituency groups.
- CYSHCN Project National Advisory Committee
- Encouraging linkages among state MCH and CSHCN directors,
regional consultants, and state and local program representatives
to maximize resources and enhance the development of culturally
and linguistically competent systems of care for CSHCN and
their families.
- Participation in meetings, workshops and conferences,
advisory boards and work groups, multimedia conferences
(video, telephone, Web-based), at the national, regional,
state and local levels.
- Contribution of articles and products to existing newsletters,
publications and Internet sites of a broad range of constituency
groups concerned with children and youth with special
health care needs and their families.
- Providing training, technical assistance and consultation
to state MCH and CSHCN Directors and programs serving children
and youth with special health care needs and their families.
- Developing and disseminating products and
materials specifically designed to promote culturally and linguistically
competent systems of care
Resources
and Links
Federation
of Families for Children's Mental Health
This site
has a number of publications supporting family-centered practices,
including:
- Tips
For Developing Sustainable Family-run Organizations
- Principles
for Family Involvement
- Principles
of Family Support
- Involving
Families in Policy Group
New - the Catalyst Center's State-at-a-Glance Chartbook on Coverage and Financing of Care for Children and Youth with Special Health Care Needs
The LEP
Toolkit (PDF) contains promising
tools to assess the hospital quality and
safety
in communicating with primarily Spanish
speaking children and families & promising
models to improve quality and safety-related
communication (based on problems reported
in focus groups and surveys by the families
themselves). The Toolkit has been developed
by the Child
and Adolescent Health Measurement Initiative
(CAHMI) at
Oregon
Health & Science
University
(
see the "Spotlight
On" section to navigate to the toolkit)
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