Families of children and youth with special health care 
needs have the same hopes and dreams as all families, but 
many have difficulty getting the services they need. 

Now more than ever before, communities need to create a 
comprehensive system of services that meets the needs of ALL 
families, including those families having children and youth 
with special health care needs. 

Likewise, family-centered care, family-professional 
partnerships and cultural and linguistic competence need to 
be integrated into service systems to improve the quality of 
health care, increase access to services, and reduce health 
disparities. 

As part of the President’s New Freedom Initiative and 
Healthy People 2010, states and communities are working to 
implement six outcomes to help build a "community-based 
system of services" for families, especially for parents of 
children and youth with special health care needs. Here's a 
brief look at these six outcomes. 

First, families must be active partners in decisions that 
affect their children's health and well being. Families 
report that providers sometimes forget to seek their input 
or don’t recognize their expertise. Families also are needed 
as partners to improve services, policies and procedures 
that affect the health and well-being of children and 
families. 

Second, pediatricians and other primary care providers 
should work with families to provide a "medical home". 
Medical homes provide a regular source of high quality, 
continuous primary health care, and referrals to specialty 
care. Medical services should be coordinated with the 
child’s educational, social, and other community-based 
services. Medical homes address the needs of the whole child 
within their family's culture. 

Third, families need an adequate source of insurance and 
financing to pay for primary and specialty care, equipment, 
therapies, hospitalizations, and medicine. Lack of insurance 
or limited coverage causes financial hardships for families, 
presenting them with difficult choices about their 
children’s needs. A comprehensive system that includes 
adequate, affordable health insurance will assure that all 
children with special health needs have access to the full 
array of benefits and services they need. 

Fourth, early and continuous screening is important for all 
children. Although newborn screening tests are performed in 
hospitals, follow up evaluations are needed to make sure 
children don't "fall through the cracks." Periodic 
developmental screening for all children, in coordination 
with the child’s medical home, can help to identify problems 
early and prevent secondary conditions. 

Fifth, services need to be community based so that families 
can use them easily. Confusing rules and paperwork can be 
difficult. Because children and youth with special needs 
often require services from different agencies, community 
systems need to identify barriers to accessing services and 
ensure that they work together in a way that makes sense for 
the family. When these needs are met, families report that 
they are more satisfied with the services they receive. 

And sixth, now more than ever, youth with special health 
needs can make a successful transition to adult life. This 
means that community services are coordinated to help youth 
move from the pediatric to the adult health care system, 
from secondary to post-secondary education, and toward 
employment and self-sufficiency. 

While all six goals are important, a comprehensive system is 
more than a set of six independent efforts. These six goals 
must be interconnected at the community level and cannot be 
fully achieved in isolation from one another. Together, the 
achievement of these goals will ensure that all families can 
benefit from an effective community-based system of services 
and supports.