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AMCHP Resources

Standards for Systems of Care for Children and Youth with Special Health Care Needs - DRAFT TOOLS


DRAFT Standards Orientation Tool:

DRAFT Standards Assessment Tools:

To Assess ALL Standard Domain Areas in One Tool: (best to print and complete by hand)

To Assess SINGLE Standard Domain Areas In-Depth:

Use these directions for any of the In-Depth Tools:

Fillable and Savable PDF Versions (to complete electronically):

Print-and-Complete on Paper Versions (to complete by hand):


External Resources
 

Family/Professional Partnerships

National Center for Family/Professional Partnerships works to increase leadership capacity and promote knowledge and measurement of family-centered care through the Family-to-Family Health Information Centers and communities of learners.  

National Center for Cultural Competence works to increase the capacity of health care and mental health care programs to design, implement and evaluate culturally and linguistically competent service delivery systems.  

National Consumer Center for Genetic Resources and Services works to enhance access to quality information, the sharing of quality and vetted resources, peer-to-peer partnership, and organizational development resources in order to achieve parity in access and to increase the quality of care.   

Early and Continuous Screening
Sickle Cell Disease Newborn Screening Program National Coordinating and Evaluation Center supports grantees in their activities and efforts related to outreach, education and genetic counseling for health care providers, affected individuals across their lifespan, their families, and the general population.  

National Center on Hearing Assessment and Management works to ensure that all infants and young children with hearing loss are identified as early as possible and provided with timely and appropriate audiological, medical, and educational intervention.

National Newborn Screening and Genetics Resource Center provides State newborn screening programs with expert consultation and technical assistance, resource development, education and training, and collaboration with stakeholders. 

The National Center for Children’s Vision and Eye Health advances and promotes children’s vision and eye care, and provides leadership and training to public and private entities. 

Health Insurance and Financing
Catalyst Center conducts policy research to identify and evaluate financing innovations, disseminate findings broadly using multiple modalities and provide technical assistance on health care financing policy and practice. 

National Maternal and Child Oral Health Policy Center seeks to enhance knowledge, build capacity and expand the community of individuals promoting the oral health of MCH populations. To learn more about opportunities in health care reform for oral health in CSHCN populations, download their issue brief.

Easy to Use Community Services
National Center for the Ease of Use of Community-Based Services will advance policy and practice solutions that improve the ease of use of community based services by developing a state leadership network, promoting partnerships and recognize leading communities. 

Regional Genetic and Newborn Screening Service Collaboratives National Coordinating Center serves as the bridge between the regional collaboratives and MCHB, consumer and professional organizations, researchers, public health organizations, and policy makers. 

Medical Home
National Center on Medical Home Implementation works to ensure that all children, including children with special health care needs, have access to a medical home by enhancing and providing resources, tools, technical assistance and support. 

Health Care Transition
National Health Care Transition Center works to assure that youth with/without special health care needs receive care in a medical home that provides family-centered/youth activated transition preparation, planned transfers from pediatric to adult health care and respectful partnerships. 

Community Circle of Care is a team approach to supporting and serving children and youth with serious emotional and behavioral challenges.

Condition Specific
National Center for Project Access provides national leadership on improving access to comprehensive, coordinated health care and other services for children and youth with epilepsy. 

National Coordinating Center for Sickle Cell Disease Treatment Demonstration Program provides technical assistance, collects and analyzes data, and implements activities required by the program’s authorizing legislation to grantee networks.  

State Public Health Autism Resource Center is working to increase the capacity of state Title V agencies to enhance services and supports to children, youth and families with Autism Spectrum Disorders.  

The Genetics in Primary Care Institute offers resources to increase primary care provider knowledge and skills in providing genetic-based services.

Traumatic Brain Injury Technical Assistance Center supports the efforts of the Federal Traumatic Brain Injury Program by providing technical assistance and information to grantees and assisting the States as they seek to establish system change. 

Data Resources
Data Resource Center for Child and Adolescent Health works to advance the effective use of public data on the health and health-related services for children, youth and families; includes national and state-based data from the National Survey of Children’s Health and the National Survey of Children with Special Health Care Needs.  

The Newborn Screening Clearinghouse is a central repository of current educational and family support and services information, materials, resources, research, and data on newborn screening. 

The National Database for Autism Research (NDAR) is an NIH-funded research data repository that aims to accelerate progress in autism spectrum disorders research through data sharing, data harmonization, and the reporting of research results.

Key Findings: Trends in the Prevalence of Developmental Disabilities in U.S. Children, 1997-2008 present results from a 12-year retrospective longitudinal study on developmental disabilities.