Children and Youth with Special Health Needs
A Summary of Activities and ResultsDecember 2010
Children and Youth with Special Health Needs (CYSHN) is a state health department program accountable for the successful performance of core public health functions on behalf of children and youth with special health needs, their families and communities.
Children and youth with special health care needs (CYSHCN) are those who have (or who are at increased risk for) a chronic physical, developmental, behavioral or emotional condition and who also require health and related services of a type or amount beyond that generally required.
Estimates of children with special health needs in Minnesota range from a minimum of 160,000 up to 200,000. One in every five Minnesota families with children has at least one child with a special health need.
The vision of CYSHN is "Ongoing Improvement of Community-Based Systems Serving CYSHCN and Their Families." CYSHN provides state-level leadership in partnership with families and other stakeholders to achieve this vision through emphasis on, and expertise with, Quality Improvement concepts and techniques that focus on the following six national priorities for children and youth with special health care needs.
- Parent partnerships in decision making and family-centered care
- Access to enhanced primary care within a medical home
- Access to adequate funding for health care
- Early and continuous screening to detect and address health and developmental conditions as early as possible
- Well organized, community-based systems
- Transition to adult health care, work and independence
Information, Referral and Follow-up
Connecting children and families with necessary services and resources is an essential public health service provided by CYSHN. Activities include:
- Linking families and health professionals to needed services and information through the toll-free Information and Assistance line (1-800-728-5420).
- Developing and/or disseminating state, regional and local resource guides such as the Central Directory of Early Intervention Services.
- Providing health information and information about specialized services to families of children with, or at risk for, chronic illnesses and disabilities.
- Follow-Up linking families with resources and services whose infants have been diagnosed with metabolic or endocrine disorders, infants with confirmed hearing loss and infants identified with a birth defect through the Birth Defects Information System (BDIS).
Throughout 2009, there were over 150,000 page views of CYSHN’s more than 900 web pages of information.
- There were over 36,000 visits to web pages related to specific health conditions
- More than 10,000 visits to pages with financial resources information
- Nearly 9,000 visits on eligibility for early intervention and early childhood programs
- Over 6,000 visits to pages related to topic specific fact sheets such as bullying and social isolation
- Over 4000 visits to pages related to transitioning from pediatric to adult care.
While the web is a powerful for disseminating information of general interest about CYSHCN to their families and the public, some information, referral and follow-up care is specific to individual needs and concerns:
- The Newborn Metabolic Screening program initiates and maintains contacts with approximately 150 families and their physicians per year.
- The Early Hearing Detection and Intervention Program currently serves over 300 families of children with permanent hearing loss and gains about 130 new families each year.
- Every physician of a newborn with conductive hearing loss is contacted for follow-up
- The CYSHN information and assistance line responds to more than 500 calls per year.
- Thirty percent of the callers need help with financing for health care services
- Thirty percent needs assistance locating needed medical, diagnostic and related services
- Thirty five percent of the calls are related to a child with a health condition that is physical in nature; 28% are related to a child’s developmental disability or autism; 15% are related to a child’s mental health issues.
CYSHN distributed a number of public awareness materials in 2009.
- More than 80,000 developmental wheels describing developmental milestones in and interesting and easy to follow format in four different languages were distributed in 2009.
- The family of each infant born with one of 44 conditions identified through the birth defects program receives information about services and resources available to their children.
Addressing the needs of children with chronic illnesses and disabilities can be an overwhelming challenge for families, professionals and communities. CYSHN provides:
- Technical assistance and resources for primary care professionals through efforts such as CYSHN's medical home initiatives, trainings for mental health professionals and suicide prevention efforts.
- Training is available on a variety of topics such as health care financing (MAZE), identification and management of specific disorders or conditions such as Fetal Alcohol Syndrome and others.
Early Hearing Detection and Intervention Learning Collaborative
Seven regional teams comprised of 47 members are building capacity in their regions to reduce the number of infants who are lost to follow-up and children who are at risk of or have a hearing loss through the EHDI Learning Collaborative which uses the IHI Breakthrough Series Model for Improvement.
Community Partnerships Collaborative for Autism and Developmental Disabilities
CYSHN developed and implemented a curriculum designed to improve communication, family partnerships and collaboration among parents, physicians, screening programs and special education. A collaborative learning quality improvement model was initiated and seven parent / professional quality improvement teams of at least 5 members each participated in the collaborative
- Over the past five years (2004-2009) nearly 5,400 people have been trained in 240 trainings designed to provide information on a variety of funding streams available in Minnesota.
- Estimates of the transfer of knowledge (or reach) these trainings have on the number of children with special health needs potentially impacted by each trainees is 130 children to each trainee. If only 25% of those potentially impacted actually benefit from the information provided, nearly 177,000 CYSHCN and their families have benefitted from the MAZE training over a five year period.
DC 0-3: The CYSHN program continues to partner with the Children's Mental Health Services Division at the Minnesota Department of Human Services (DHS) to provide statewide trainings on the DC: 0-3™ diagnostic criteria as a method to increase local capacity of mental health professionals for service provision to young children. DC: 0-3™ is a taxonomy that allows a more child friendly diagnostic classification system that can be converted to the DSM-IV classification system for purposes of reimbursement thereby decreasing financial barriers to mental health services.
- To date, 2,500 professionals have been trained in the diagnostic criteria specifically and infant mental health generally.
Early intervention Minnesota has a history of serving many fewer children than would be anticipated to be eligible for Part C – Early Intervention.
- Since the rule change broadening the eligibility criteria, CYSHN has provided training, technical assistance guidance and materials to health care and early intervention providers relevant to health conditions with a high probability of resulting in developmental delays at school age through an estimated 100 individual case consultations and 20-30 group presentations per year.
Screening and Early Identification
Identifying chronic illness and potentially disabling conditions early in life promotes positive long-term outcomes. In addition to the Newborn Screening, Early Hearing and Birth Defects activities described above, CYSHN activities also include:
- Technical assistance to local agencies implementing the Infant Follow Along Program for children birth to age three.
The Follow-Along Program (FAP): The FAP is a cooperative arrangement between the MDH and local FAP managing agencies. Most local health departments (93 percent) provide periodic tracking and monitoring of the health, development, and social emotional development of children birth to three through the FAP. More that two thirds of the local health departments provide universal tracking. This involves offering the service to all families, regardless of risk. The remainder provide tracking for children with risk factors. The FAP also provides anticipatory guidance and education to families about the development of their child and information on healthy development including activities to do with their children to encourage typical development and healthy behaviors.
- 33,338 children were enrolled FAP in 2009.
- Of the more than 146,000 developmental domains screened during 2009, over 5,600 developmental concerns were identified.
- Of the 12,000 social-emotional screenings completed in 2009, 354 concerns were identified
- More than 8,000 referrals for needed services were made in 2009 by FAP providers
Monitoring Health and Well-being
CYSHN is responsible for monitoring and reporting the health and well-being of children and youth with special health needs. Particular attention is paid to:
- Demographics and types of conditions
- Service use and need
- Financing health services
- Quality of service delivery
- Differences and similarities compared to same aged peers
- Long-term outcomes for those identified early.
POLICY DEVELOPMENT AND PLANNING
Community partnerships are essential if services and systems are to achieve intended outcomes.
- CYSHN district consultants are located throughout the state to provide specialized consultation and support to enhance positive outcomes for children/youth with special health needs and their families.
- CYSHN staff and programs at all levels have worked to support the development of and on-going relationships with child serving organizations at both the state and local levels.
Systems and services designed to meet the needs of children and families, must consider the needs of children with chronic illnesses and disabilities. CYSHN staff:
- Engage in the development, coordination and support of state and local systems for children with special health needs including Minnesota's Interagency Early Intervention System (Part C) and Minnesota's System of Interagency Coordination (MNSIC).
- Serve in an advisory capacity to a variety of policy-making bodies to assure the interests of children with special health needs are considered.
- Successfully led the Pediatric Medical Home Initiative in Minnesota for six years.
- Have extensive staff expertise with the IHI Breakthrough Series and the Model for Improvement.
- Staff groups such as the Newborn Hearing Screening Advisory Committee and the Newborn Screening Advisory Committee to advise the Commissioner of Health and make recommendations to improve the system of care and meet the intent of applicable state statutes.