Children & Youth with Special Health Care Needs

Maine’s Children and Youth with Special Health Care Needs sits within the Maine Centers for Disease Control, Division of Disease Prevention and sits within the Title V- Maternal & Child Health.

The Mission of Maine’s Children and Youth with Special Health Care Needs is to improve the health and quality of life for children with special health care needs and their families.

Maine’s Children and Youth with Special Health Care Needs services aims to provide and promote family-centered, coordinated care, and facilitate the development of community-based systems for children and families.

CYSHCN Vision

We envision a State where all Children and Youth with Special Health Care Needs will:

• Enjoy a full life, from childhood through adulthood.
• Experience systems that support their social, emotional, physical health and wellbeing.
• Have dignity, autonomy, independence, and active participation in their communities.
• Engage in a system that supports families as partners in care and shared decision making.

Service Goals

The Maine Children and Youth with Special Health Care Needs services thrive to provide and promote family-centered, coordinated care, and facilitates the development of community-based systems for children and families.

All children and youth with special health care needs will:

• Be screened early and continuously to determine child specific needs and have access to culturally appropriate referral resources.
• Have adequate private and/or public insurance to pay for the services they need.
• Have geographic and timely access to primary and specialty services.
• Receive coordinated ongoing comprehensive care within a medical home.
• Be provided access to comprehensive home and community-based supports.
• Receive the services necessary to make appropriate transitions to adult health care, work, and independence.

Children are screened early and continuously for special health care needs.

In Maine babies born at birthing hospitals or birthing centers are screened through:

• Newborn Bloodspot Screening
• Newborn Hearing Screening
• Critical Congenital Heart Disease Screening

If your child’s screen is identified as having screened positively for any condition that could lead to developmental delays, the State of Maine Law indicates that the Maine CDC Maternal and Child Health Program, must make a referral to Maine’s Early Intervention Services through Child Development Services (CDS). Therefore, families may be contacted by CDS to conduct further assessment of your child’s needs and development so that they can receive services.

National Standards for Systems of Care for Children and Youth with Special Health Care Needs Version 2.0 identifies four Foundational Standards for Systems:

• Children and families of CYSHCN are active, core partners in decision making in all levels of care.
• All services and support for CYSHCN are implemented and delivered in a culturally competent, linguistically appropriate, and accessible manner to best serve CYSHCN and their families.
• Insurance coverage for CYSHCN is accessible, affordable, comprehensive, and continuous.
• All care provided to CYSHCN, and their families is evidence-based where possible, and evidence-informed and/or based on promising practices where evidence-based approaches do not exist.

2020-2021 National Survey of Children’s Health Survey - Maine Results

Indicator Question Asked	Maine Answered Yes	Maine Answered No	US Data Answered Yes
Well-Functioning System of Care Does this child receive care in a well-functioning system?	17.1%	82.9 %	13.7%
Family-centered care If this child received care during the past 12 months, did they receive family centered care?	85.2%	14.8%	82.7%
Medical Home Percent of children with special health care needs, ages 0 through 17, have a medical home.	47.4%	52.6%	42%
Adequate and Continuous Insurance Percent of children, ages 0 through 17, who are continuously and adequately insured.	68.6%	31.4%	63.6%
Health Care Transition Percent of adolescents with special health care needs, ages 12 through 17, who received services necessary to make transitions to adult health care.	33.8%	66.2%	20.5%
Health Care Access and Quality During the past 12 months, was there any time when this child needed health care, but it was not received?	93.3 % did receive needed health care	6.7 % did not received needed health care	8.8% did not receive needed health care
Indicator Question Asked	Maine Answered Never	Maine Answered Sometimes	Maine Answered Always/Usually
Health Care Access and Quality During the past 12 months, how often were you frustrated in your efforts to get services for your child?	60.1%	34.5%	5.4%