Children and Youth With Special Health Care Needs: A Profile

The following questions can help Title V CYSHCN programs approach their needs assessment process in alignment with The Blueprint for Change Children and Youth With Special Health Care Needs: A Profile article.

For questions that align with other critical areas of the Blueprint, see Connecting your Needs Assessment with the Blueprint for Change.

What is the prevalence of special health care needs (SHCN) within our state/jurisdiction using the latest data from the National Survey of Children’s Health (NSCH) or other data sources?

Area of Title V Needs Assessment
MCH Population Health and Wellbeing	Title V Program Capacity	Title V Program Partnerships, Collaboration and Coordination
✓

Describe the sociodemographic and health-status related characteristics of Children and Youth With Special Health Care Needs (CYSHCN) and their families within our state/jurisdiction.

Area of Title V Needs Assessment
MCH Population Health and Wellbeing	Title V Program Capacity	Title V Program Partnerships, Collaboration and Coordination
✓

Critical Area of Blueprint
Health Equity	Family and Child Well-Being and Quality of Life	Access to Services	Financing of Services
✓	✓

Describe the proportion of CYSHCN that are served in a “system of care” within our state/jurisdiction.

Area of Title V Needs Assessment
MCH Population Health and Wellbeing	Title V Program Capacity	Title V Program Partnerships, Collaboration and Coordination
✓

National Performance Measure
Medical Home	Transition	Bullying
✓	✓	✓

Critical Area of Blueprint
Health Equity	Family and Child Well-Being and Quality of Life	Access to Services	Financing of Services
	✓	✓

What percentage of families of CYSHCN and YSHCN in our state/jurisdiction are partners in decision-making at all levels, and what are the sociodemographic characteristics of those that are vs. those that aren’t?

Area of Title V Needs Assessment
MCH Population Health and Wellbeing	Title V Program Capacity	Title V Program Partnerships, Collaboration and Coordination
✓		✓

National Performance Measure
Medical Home	Transition	Bullying
✓

Critical Area of Blueprint
Health Equity	Family and Child Well-Being and Quality of Life	Access to Services	Financing of Services
✓	✓

What percentage of CYSHCN in our state/jurisdiction receive coordinated, comprehensive, ongoing care within a medical home, and what are the sociodemographic characteristics of those that are vs. those that aren’t?

Area of Title V Needs Assessment
MCH Population Health and Wellbeing	Title V Program Capacity	Title V Program Partnerships, Collaboration and Coordination
✓

National Performance Measure
Medical Home	Transition	Bullying
✓

Critical Area of Blueprint
Health Equity	Family and Child Well-Being and Quality of Life	Access to Services	Financing of Services
✓		✓

What percentage of families of CYSHCN in our state/jurisdiction have adequate private or public insurance, and what are the sociodemographic characteristics of those that are vs. those that aren’t?

Area of Title V Needs Assessment
MCH Population Health and Wellbeing	Title V Program Capacity	Title V Program Partnerships, Collaboration and Coordination
✓	✓

Critical Area of Blueprint
Health Equity	Family and Child Well-Being and Quality of Life	Access to Services	Financing of Services
✓		✓	✓

Are services for CYSHCN in our state/jurisdiction organized so families can use them easily and are satisfied with the services they receive, and what are the sociodemographic characteristics of those receiving easy to use community-based services vs. those that aren’t?

Area of Title V Needs Assessment
MCH Population Health and Wellbeing	Title V Program Capacity	Title V Program Partnerships, Collaboration and Coordination
✓

National Performance Measure
Medical Home	Transition	Bullying
✓

Critical Area of Blueprint
Health Equity	Family and Child Well-Being and Quality of Life	Access to Services	Financing of Services
✓	✓	✓

What percentage of YSHCN in our state/jurisdiction receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence; and what are the sociodemographic characteristics of those that are vs. those that aren’t?

Area of Title V Needs Assessment
MCH Population Health and Wellbeing	Title V Program Capacity	Title V Program Partnerships, Collaboration and Coordination
✓

National Performance Measure
Medical Home	Transition	Bullying
✓	✓

Critical Area of Blueprint
Health Equity	Family and Child Well-Being and Quality of Life	Access to Services	Financing of Services
✓	✓	✓

What are the barriers within our state/jurisdiction to a well-functioning system of care for CYSHCN and their families?

Area of Title V Needs Assessment
MCH Population Health and Wellbeing	Title V Program Capacity	Title V Program Partnerships, Collaboration and Coordination
✓	✓	✓

National Performance Measure
Medical Home	Transition	Bullying
✓

Critical Area of Blueprint
Health Equity	Family and Child Well-Being and Quality of Life	Access to Services	Financing of Services
✓	✓	✓	✓

Last Updated

07/16/2024

Source

American Academy of Pediatrics