Section III.E.2.c State Action Plan Narrative by Domain

 

MCH Population Domain: Children with Special Health Care Needs

 

National Performance Priority Area: Medical Home

 

Increase the Utilization of Medical Home – 2020 Annual Plan Narrative (October 1, 2019 – September 30, 2020):

 

A medical home is not a building or place; it extends beyond the walls of a clinical practice. According to the National Center for Medical Home Implementation, “It is an approach to providing comprehensive primary care that facilitates partnerships between patients, clinicians, medical staff, and families.” The medical home recognizes the family as a constant in a child's life and emphasizes partnership between health care professionals and families. This type of care is the gold standard for all individuals but becomes increasingly important for individuals with chronic conditions or a special health care need. To achieve the optimal outcome for children and youth with special health care needs (CYSHCN), the process requires looking at the child as a “whole”, and not as a symptom, condition or a disease. For comprehensive care to occur successfully, it must address all needs, including but not limited to: medical, social and behavioral, educational, and financial. Linkage to additional resources outside of the medical home is also needed, including timely and appropriate referrals to therapies and family support. It is well known that CYSHCN experience a variety of disparities and that these disparities are worsened by system fragmentation and missed opportunities to provide successful care coordination.

 

The Evidenced-based Strategy Measure (ESM) originally chosen will continue to evaluate the degree of care coordination education and/or training throughout the state conducted by state-level staff and grantees. This number more than doubled from Federal Fiscal Year (FFY) 2017 to FFY 2018, jumping from 262 individuals educated and/or trained in care coordination to 698. Significant increases are expected to continue each year. To better evaluate the care received by CYSHCN served by the North Dakota Department of Heath’s (NDDoH) Division of Special Health Services (SHS), technical assistance from the National Center for Maternal and Child Health (MCH) at Georgetown University was obtained, and two additional ESMs have been added. One ESM will measure the percentage of clients utilizing medical home contract services with special health care needs, as these individuals will receive the greatest benefit from being served within a medical home. The other ESM will measure the impact of family support contracts by evaluating family satisfaction with services provided by Family Voices of North Dakota.

 

According to the 2016-2017 National Survey of Children’s Health (NSCH), 47.1% of North Dakota CSHCN are served in a medical home, compared to 43.2% in the United States (U.S.) and 78.9% of North Dakota families indicated they had a personal doctor or nurse. Provider shortages and other access issues in North Dakota, not unlike other rural states, may be contributing factors for those that don’t. Some communities rely heavily on locum providers to meet the needs within their communities. Using locums to provide care and follow-up may mean that patients are seeing a different provider each time they are seen in the clinic. Although families may have a consistent primary care setting, a consistent medical provider is sometimes lacking. Most North Dakota families with CYSHCN who responded to the survey felt that their child’s care was family-centered (87.1%). This implies strong family involvement within the clinic setting. Since families are often care coordinators for the child with a special health care need, it important they are being recognized as an important partner in providing optimal care to keep their child safe and healthy. The care coordination subcomponent of the medical home measure continues to be an area of concern for North Dakota (67.2%). Although this is still above the national average of 61.8%, it will remain a priority focus area for SHS in the coming year.

  

Total: All children who receive coordinated, ongoing, comprehensive care within a medical home (Indictor 4.12)	(ND) 52.8	(US) 48.6
Component: Usual Source of Care for CSHCN	87.0	83.0
Component: Personal Doctor or Nurse for CSHCN	78.9	79.8
Component: Family-Centered Care for CSHCN	87.1	82.4
Component: Referrals if needed for CSHCN	79.0	72.6
Component: Care Coordination if needed for CSHCN	67.2	61.8
0-5 Years for CSHCN*	58.6	42.7
6-11 Years for CSHCN*	55.7	41.0
12-17 Years for CSHCN	35.1	45.4
CSHCN	47.1	43.2
NON-CSHCN	54.0	49.8

*--Interpret with caution   Note: All data was rounded to one decimal point.

 

SHS continues to build infrastructure for medical home within North Dakota. Existing partnerships will continue with organizations such as Blue Cross Blue Shield of North Dakota, Family Voices of North Dakota, private health systems, and federally qualified health centers. SHS has also brought new partners to the table (e.g. North Dakota Center for Rural Health, Community Health Association of the Dakotas, etc.) via quarterly Skype meetings of the North Dakota Medical Home Committee, which will continue to serve as an opportunity for professionals throughout the state to share ideas, trainings, and projects being undertaken that have a focus on medial home core components. Through combining work efforts, duplication is avoided and more wide-ranging influence on the system of care throughout the state is achievable.

 

Data will continue to be one of the cross-cutting drivers influencing SHS work efforts. Results from the NSCH will be used to prioritize goals for the CYSCHN domain. State data gained through other means (e.g., public and private payers, grantees, family support organizations, etc.) that was not able to be obtained through the national survey will be utilized to enhance programmatic goal setting after the MCH Five-Year Needs Assessment.

 

Relationships will be strengthened with North Dakota Medicaid, which is a major factor in improving a state-wide system of care for children and youth with special health care needs. A revised long-standing Memorandum of Understanding will be finalized between North Dakota Medicaid and Title V by December 30, 2019. In addition, North Dakota Medicaid staff will actively participate in the annual SHS Medical Advisory Council meeting, where issues with eligibility for various state services, reimbursement issues, and gap-filling services for Medicaid-eligible children are discussed amongst state-level staff, various medical professionals, and other pertinent partners.

 

To gain more traction for medical home and other system enhancing work efforts, SHS has shifted its focus to address the pediatric population as a whole. All children can benefit from a medical home, including those with special health care needs. The Well-Child Check Collaborative that was formed through the Blue Alliance Program, a managed care program through Blue Cross Blue Shield of North Dakota, exceeded its goals of increasing the well-child check rate in North Dakota Blue Alliance clinics by 5% in ages 0 to 15 months and ages 3 to 6 years. Although these goals were surpassed, the group will continue to meet quarterly to establish new goals and work together on other pediatric medical home work efforts. Non-branded educational materials endorsing Bright Futures Guidelines and aimed at education about appropriate well-child care will continue to be made available by the NDDoH, both hard-copy and electronically. The SHS Division Director will also participate in a quality improvement project aimed at improving the rates of screenings through the state’s Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program, North Dakota Health Tracks.

 

Potential new projects will be explored with the Centers for Disease Control and Prevention North Dakota ambassador for the Learn the Signs. Act Early Program and work around developmental milestones and pediatric preventative care. To increase range of individuals obtaining information on various topics such as medical home, care coordination, and pediatric preventative care, SHS will redesign a portion of the new NDDoH website to include newly developed or revised electronic resource materials and make them more available to families or professionals. The newly enhanced website will also provide linkage to the National Resource Center for Patient/Family-Centered Medical Home and other national centers of excellence to ensure access to most current and reputable resources for care coordination and medical home.

 

With funding from SHS, Family Voices of North Dakota will continue to provide care coordination trainings to families in various locations throughout North Dakota. Through these trainings, families will learn how to develop a care plan for their child, improve relationships with their medical team, work with insurance, and learn how to navigate the complex system of care for children with special health care needs. This coming year, SHS staff will also partner with Family Voices of North Dakota to organize a state-wide training event for interested professionals to improve capacity around care coordination and family centered care. By learning how to bring families to the forefront of their child’s care, medical providers will be better equipped to address the child’s needs more comprehensively and effectively. It is also important that this training is culturally competent and considers the social determinants of health and existing health disparities within the state that may have an impact on the delivery of care. Collaboration with the Health Equity/Maternal and Child Health Partnership Coordinator and various family leaders will ensure disparate populations are engaged in work on behalf of CYSHCN and their families. Links to NDDoH trainings and other resources, such as those from the National Resource Center for Patient/Family-Centered Medical Home will be made available on the new NDDoH website, to assure that families and providers have access to current and reputable information on care coordination and medical home.

 

The MAVEN system that is currently used for disease surveillance is being adapted and customized for use by SHS and other NDDoH programs. The system is expected to replace an outdated database and enable the division to share portions of the care coordination process electronically with local county social service staff. The MAVEN system will increase overall efficiency for several programmatic functions within SHS. An in-person training for local county social service partners, eligibility workers, and county directors that determine eligibility and provide care coordination for SHS clients, will take place in the fall of 2020.

 

Funding opportunities will continue to be made available to grantees for medical home quality improvement projects. This assistance is expected to support expansion of medical homes and enable care coordination to take root in a variety of settings. During this funding cycle, SHS staff will continue to monitor and provide technical assistance to the Northwood Deaconess Health Center (NDHC) Pediatric Medical Home System Improvement contract that was awarded to coordinate services and assist families utilizing the NDHC rehabilitation services. Medical home project grantees will also play an important role on the North Dakota Medical Home Committee, since they will be able to offer lived experience with the implementation process in their facilities. Members of the committee will also assist SHS to improve the application process in an effort to expand the number and type of medical home applicants going forward.

 

Feedback was solicited from key partners (e.g., physicians, families, Family Voices of North Dakota, county social service workers, clinical coordinators, other state agencies) to ensure that upcoming activities will advance medical home within the state. Of those that responded, it was agreed that activities in the annual plan are well thought out, achievable, and identified future potential partnerships. SHS staff will continue to solicit feedback to assure the needs of the families and community partners are met and that service improvements and innovative practices are addressed.

 

Cross-cutting implementation strategies at the heart of all SHS programs include: care coordination, collaboration, data-informed decision, and information and education.

 

Additional critical partnerships/initiatives include:

• North Dakota Medicaid – partnerships will be further enhanced with programmatic areas that provide financial help and care coordination to clients.
• Family organizations – family engagement is a priority in the medical home model. Information and educational opportunities on medical home and care coordination will be disseminated and/or provided through family support organizations.
• State Systems Development Initiative (SSDI) – SSDI will support analytical and data needs (e.g., performance measure data and analysis of national survey data).
• Bright Futures – Bright Futures materials such as the “Recommendations for Preventive Pediatric Health Care” will be disseminated to partners and families. These guidelines emphasize the importance of continuity of care in comprehensive health supervision.
• Medical home partners – Examples include payers, providers, associations such as the North Dakota Chapter of the American Academy of Pediatrics, health system representatives, care coordinators such as local county social service staff, universities, and family organizations such as Family Voices of North Dakota.

 

See Section III.E.2.b.ii. Family Partnership narrative for details regarding levels of family engagement in health and healthcare.

 

MCH Population Domain: Children with Special Health Care Needs

 

National Performance Priority Area: Transition

 

Increase the Number of CSHCN Receiving Transition Support – 2020 Annual Plan Narrative (October 1, 2019 – September 30, 2020):

 

Transition is defined as the movement, passage, or change from one position or state to another. This occurs for all children but may be more difficult for children and youth that have special health care needs. This is of importance as youth and young adults begin to transition from a pediatric health system to an adult health care provider. Often this requires leaving a pediatric provider that has cared for the child and family with a very hands-on approach for managing their medical needs and a substantial amount of care coordination. As the child ages, it becomes very important for the family and child to start planning for this change early so that their needs can be met prior to the youth turning 18 years of age, when many leave home for college, work, or other out-of-home living situations. The preparation time required is different for all children. In many situations, a portion of the planning occurs in the clinic to promote a seamless transition into adult health care. Transition readiness is important for all youth and young adults.

 

The original Evidence-Based or Informed Strategy Measure (ESM) selected to monitor transition impact in North Dakota focuses on increasing the number of CYSHCN receiving transition support.  In North Dakota, this has been defined as the number of individuals who have received education and/or training on health care transition. The number of individuals who have received education and/or training specific to CYSHCN is expected to have an overall impact on receipt of care in a well-functioning system. During Federal Fiscal Year (FFY) 2017, 433 individuals received education and/or training. This current year, it has nearly doubled in number to 781 receiving education and/or training. This was primarily provided through the North Dakota Department of Health’s (NDDoH) Division of Special Health Services (SHS), County Social Services, Family Voices of North Dakota training opportunities, conference presentations to the North Dakota Association of Community Providers and the Federation of Families, and transition tool kit distributions to medical providers. To better evaluate the care received by children and youth with special health care needs (CYSHCN) served by the North Dakota Department of Heath’s (NDDoH) Division of Special Health Services (SHS), technical assistance from the National Center for Education in Maternal and Child Health, at Georgetown University, was obtained. This upcoming year, one ESM will be added to evaluate the percentage of transition aged youth receiving transition assessments at contracted multidisciplinary clinics. The goal of this will be to better gauge the level of transition activities occurring with patients and families. Although all youth benefit from transition activities, CYSHCN generally require a higher level of preparation for transitioning to adult health care. The multidisciplinary clinics offer services to all individuals at no cost, regardless of residence, insurance coverage, income and socioeconomic status. Non-English-speaking individuals will continue to be offered interpretive services to assure understanding of the child’s condition and plan of care.

 

Data from the 2016-2017 National Survey of Children’s Health (NSCH) indicates that 21.4% of adolescents in North Dakota with a special health care need received services necessary to make the transition to adult health care, as compared to 16.7% in the United States (U.S.). There is a noticeable difference in the level of transition support CYSHCN received in North Dakota based on gender, with 24.7% of females receiving transition services compared to 17.8% of males. This is consistent with trends being seen nationally as well. Much of the data that pertains to North Dakota has too low of numbers to accurately report. 

 

 

Data from the 2016- 2017 National Survey of Children's Health — Transition (age 12-17 years)
	Non-CSHCN		CSHCN
	ND	US	ND	US
Percent of adolescents who received services necessary to transition to adult health care	23.4	13.9	21.4	16.7
Component #1: Children who had time alone with health-care provider at last check-up (time alone with provider)	44.6	36.1	41.0*	45.8
Component #2: Provider worked with child to gain skills to manage health/health-care and understand health-care changes at age 18 (active work with child)	52.7	57.4	63.5*	70.8
Component #3: Provider discussed shift to health-care providers, if needed (anticipatory guidance)	27.1*	16.5	11.6*	17.3

*--Interpret with caution    Note: All data was rounded to one decimal point.

 

A North Dakota Post-School Outcomes Survey is conducted annually by the North Dakota Department of Public Instruction (NDDPI) for students with disabilities in accordance with the State Performance Plan. This is a six-year plan that requires that state education agencies, such as the NDDPI, report on different indicators through the Annual Performance Report. As such, Indicator 14 measures the percentage of all students who are no longer enrolled in a secondary school, had Individual Education Plans (IEPs) in effect at the time they left school, and were:

A. Enrolled in higher education within one year of leaving high school. B. Enrolled in higher education or competitively employed within one year of leaving high school.

C. Enrolled in higher education or in some other postsecondary education or training program; or competitively employed or in some other employment within one year of leaving high school. Of these students with disabilities, 191 of the 689 exiters completed this survey for a response rate of 27.7% percent in 2016-2017. Health insurance status and living situations were also assessed in this survey, with 79.8% of those interviewed indicating that they had health care coverage and 61.5% being covered under their parent’s insurance. In addition, 55.6% continued to live with their parents one year after high school, while 30.2% lived independently. This survey is done through telephone calls.    

 

Staff will remain actively engaged in the NDDPI’s Transition Community of Practice, which includes a diverse group of stakeholders (e.g., representatives from special education, independent living centers, vocational rehabilitation, family organizations). This upcoming year, partnerships with multidisciplinary clinic grantees will be strengthened and technical assistance provided around health transition best practices. Staff will actively seek out and engage with new partners (e.g., Youth Empowering Social Status (YESS), State Superintendent Student Cabinet, etc.) to explore and gather input on potential new SHS transition activities. These new partnerships will ensure a focus on transition for all youth and young adults, including those with special health care needs.

 

Data will continue to be one of the cross-cutting drivers influencing SHS work efforts. Results from the NSCH will be used to prioritize goals for the CYSCHN domain. State data gained through other means (e.g., public and private payers, grantees, family support organizations, etc.) that was not able to be obtained through the national survey will be utilized to enhance programmatic goal setting after the MCH Five-Year Needs Assessment.

 

Grantees receiving funding to provide multidisciplinary clinics will continue to gather information by using the “Transition Readiness Assessment Survey” for youth and parent/caregiver to assure that those attending the clinics are being assessed for transition readiness as they move into adulthood. These clinics will continue to be made available to all families at no out-of-pocket cost. Some of these clinics also offer travel reimbursement for families traveling long distances. This helps to ensure that barriers are eliminated for disparate populations that may have difficulty accessing care. At the state-coordinated cleft lip and palate clinics, staff will continue to provide written feedback in the child/youth’s medical report to provide guidance to the youth and family in areas of transition that may need to be strengthened over the next year. Appropriate transition information and resources will be made available that is targeted to specific age groups (e.g., 14-15, 16-17, and 18-21 years of age). The compiled recommendations received from the multidisciplinary cleft lip and palate clinic staff will be analyzed and disseminated to the families and providers so that appropriate transition planning can occur. 

 

State-level staff will provide technical assistance and recommendations to multidisciplinary clinic teams regarding transition guidelines and activities being implemented. Two site visits to contracted clinics will occur at least annually to assure quality services are being delivered and programmatic contract requirements are being fulfilled. Special attention will be given to the financial component of the clinics through the completion of a financial risk assessment by grantees. This will indicate whether funds are being spent appropriately for the CYSHCN population.

 

To reach a larger population of youth, SHS will continue to disseminate transition toolkits to medical providers. New methods for outreach will include development of a more patient-centered transition toolkit that will be disseminated via all local public health units that are completing adolescent Health Tracks (EPSDT) screenings. By utilizing partners in local public health, a more population-based health focus will be addressed. The intent is to cast a “wider net” to provide important health transition information to all children, including the CYSHCN population.

 

To increase the range of individuals obtaining information on various topics such as transition, care coordination, and pediatric preventative care, SHS will redesign a portion of the new NDDoH website to include newly developed or revised electronic resource materials and make them more available to families or professionals. The newly enhanced website will also provide linkage to Got Transition and other national centers of excellence to ensure access to most current and reputable resources for care coordination, medical home and transition.

 

SHS staff will participate in the biannual planning process for the NDDPI’s Transition Conference, which is an important training event for a variety of partners. Efforts will focus on incorporating health transition content into presentations, identification and/or support of conference speakers, etc.

 

Feedback was solicited from important partners (e.g., physicians, families, Family Voices of North Dakota, county social service workers, clinical coordinators, other state agencies) to ensure that upcoming activities will advance transition within the state. Of those that responded, it was agreed that activities in the annual plan are well thought out, achievable, and identified future potential partnerships. SHS staff will continue to solicit feedback to assure the needs of the families and community partners are met and that service improvements and innovative practices are addressed.

 

Cross-cutting implementation strategies at the heart of all SHS programs include: care coordination, collaboration, data-informed decisions, and information and education.

 

Additional critical partnerships/initiatives include:

• North Dakota Transition Community of Practice – This committee provides opportunities for collaboration with school personnel, vocational rehabilitation, Developmental Disabilities Program Managers, State Council on Developmental Disabilities, and many others who are working with transition-aged youth.
• SHS County Social Service staff – County staff are SHS’s local partner in providing care coordination, including health care transition. 
• Family Organizations – Family engagement is a priority in implementing successful health transitions.  Information and educational opportunities on transition will be disseminated and/or provided through family support organizations.
• North Dakota Medicaid –Opportunities to educate youth receiving Medicaid about transition to adult health care can be explored.
• State Systems Development Initiative (SSDI) – SSDI will support analytical and data needs (e.g., performance measure data and analysis of survey data).

 

See Section III.E.2.b.ii. Family Partnership narrative for details regarding levels of family engagement in health and healthcare.

 

Additional strategies and/or activities that reflect ongoing efforts and support the overall system of care for the CSHCN population, but do not directly align with these priories include:

 

Coordinated Services Program – Provides services and resources that support coordinated management of specific chronic health conditions. Services include:

• Metabolic Food – Provides formula and low-protein modified food products for individuals with Phenylketonuria (PKU) and Maple Syrup Urine Disease (MSUD).
• Multidisciplinary Clinics – Services that provide access to pediatric specialty care and enable families to see many different medical providers and health care professionals in one place at one time. The eight types of clinics available through SHS include:
  • Asthma 
  • Autism
  • Cleft Lip/Palate
  • Developmental Evaluation
  • Metabolic Disorders
  • Myelodysplasia
  • Neurodevelopmental Coordinated Care
• Cardiac Care for Children – Provides an initial examination by a participating pediatric cardiologist and routine tests for children with cardiac conditions in addition to linkage and referral services.
• State School Nursing - Supports school nursing initiatives and promotes the connection between health and academic achievement by ensuring nursing care is safely and effectively delivered to schools, particularly in rural communities.

Financial Coverage Program – Helps families pay for medical services for eligible children, youth, and young adults who require specialty care to diagnose and treat their chronic health conditions. Services include:

• Diagnostic Testing and Evaluation – Provides coverage for services that promote early diagnosis of SHS-eligible medical conditions.
• Treatment – Provides coverage for services to children with chronic health conditions who meet medical and financial eligibility criteria.
• Russell Silver Syndrome – Provides coverage for growth hormone treatment and medical food.

 

Newborn Screening and Follow-up Program – The goal of this program is to identify conditions at an early age when treatment and intervention can prevent health problems, support early development, and save lives. Newborn screening consists of three simple tests:

• Blood Spot – Includes laboratory screening tests and follow-up services for nearly 50 genetic/metabolic conditions to identify infants that may be at risk for disorders included in the testing panel.
• Hearing – Screening tests using specialized equipment are conducted to identify newborn infants who are deaf or hard of hearing so appropriate intervention services can be started as soon as possible.
• Critical Congenital Heart Disease – Screening that checks newborns oxygen levels to help identify serious heart defects.

 

Children with Special Health Care Needs System Enhancement Program – Improves health outcomes of children with special health care needs (CSHCN) by advancing a quality, comprehensive system of care that promotes the healthy development and well-being of children and their families. Six core outcomes that describe the system of services for CSHCN include:

• Family Professional Partnership
• Medical Home
• Adequate Health Insurance
• Early and Continuous Screening and Surveillance
• Easy to Use Services and Supports
• Transition to Adult Health Care