2020 Application Year Report

NPM 11: Percent of children with and without special health care needs having a medical home.

Objectives:

• Increase by 2% the number of families who have access to a pediatric clinician with effective medical home practices in place by July 2019.
• Increase by 2% the number of families who have access to patient and family centered care coordination by July 2019.
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Strategies:

• Develop trainings and strategies with the New Mexico Child Health Improvement project for pediatric providers to improve care integration and cross provider communications using evidenced based tools such as the shared plan of care.
• Develop strategies with the New Mexico Child Health Improvement project to provide training to pediatric providers on care coordination and how to integrate the Title V CYSHCN care coordinators into their practice.
• Collaborate with the Family to Family Health Information Center to recruit family leaders to provide input to Medicaid and the Managed Care organizations to the overall system of care, specifically care coordination and family-centered care.
• The Title V CYSHCN program and the Medical Home portal staff will continue with outreach events to promote use of the Medical Home portal by primary care providers, families and other interested stakeholders by providing relevant and timely content and community resources to improve the care for CYSHCN and their families.

System of Care for Children and Youth with Special Health Care Needs

Children’s Medical Service (CMS) will continue to support the medical home concept in New Mexico through discussions at professional meetings and conferences and continuing work on the Medical Home Portal (MHP), which provides accurate and comprehensive information on health information and community resources for families in English and Spanish. The CMS Program Manager will continue to participate in the Medical Home Portal Advisory committee. This committee will be meeting to review portal metrics, usefulness and to provide input into additions that would be helpful for New Mexico families.

To support updates to the portal resources, CMS will enter a contractual relationship with the Center for Development and Disability (CDD) Information Network for three years. The CDD Information Network provides information and referral, tip sheets, library materials, and other resources to individuals with disabilities, families, physicians, educators, and other professionals in New Mexico.  The CDD Information Network maintains a database of over 4,000 resources, each including agency/program names, contact information, website, what services they provide, eligibility information, etc.  This data is stored in an information and referral software known as ReferNet.  Updates for each service provider and/or program are requested and made regularly. 

Since 2013, the CDD Information Network has shared its resource data with the Utah MHP, which has extracted a subset of those services to be included in the MHP’s services database.  The MHP provides information, tools, and other resources for physicians, families, and others who care and advocate for children with chronic and complex conditions.  The Utah MHP has developed a tool to facilitate importing and updating data maintained within the ReferNet software used by the CDD Information Network.  This partnership assists CMS to continue making information available about New Mexico community services for Children and Youth with Special Health Care Needs (CYSHCN) to families and the healthcare providers who care for them through the MHP.  A series of PEDX talks sponsored by the NM Pediatric Society will occur over the next year to promote use of the MHP with pediatricians across the State.  These activities address the strategy to promote the use of the MHP.

Care Coordination and Quality Improvement

CMS will be entering into a contract for a second year with the Center for Development and Disability (CDD) at the University of New Mexico Health Policy Program to expand the first-year work around care coordination. The first component of the project will focus on identifying Health and Other Disparities for CYSHCN by analyzing existing data. The goal of this component of the project is to identify information from existing data sources which can be used to document health and other disparities faced by CYSHCN by analyzing data from the combined 2016-2017 National Survey of Children’s Health (NSCH). Activities will include preparing an analysis plan to identify the data that will be used in the analysis and conducting appropriate analysis on the NSCH. 

The second component of the project will be to collect self-reported data on the impact of CMS. The goal of this project component is to augment the data collected in the first component with self-reported quantitative and/or qualitative data from CMS clients, their families, CMS staff and others identified by CMS.  This data will address the perceived impact of CMS services on health-related and other quality of life indicators.  Activities will include developing a client impact survey to be sent to families that will be available in both hard copy and online formats; analyzing data from the survey; and developing a needs assessment survey instrument for parents that will be disseminated on a statewide basis.

The final component will be to provide additional analysis of the encounter data. The goal of this component is to undertake additional analysis of the dataset captured in FY2019 on encounters by CMS Social Workers. Activities will include entering data on race, ethnicity, gender, county, and age supplied by CMS in the de-identified dataset and analyzing the data to identify health and other disparities based on these variables. This analysis will assist to further define the role of care coordination for CYSHCN and the value that the Title V program brings to the medical home. It will also assist in laying some groundwork for the upcoming needs assessment.

CMS will continue to closely monitor the impact of the 1115 Medicaid Waiver. Some of these changes include: care coordination enhancements, patient-centered medical homes and integrative behavioral/physical health homes, changes to eligibility, and cost sharing. With a new administration, there could continue to be changes and updates, which may affect care for CYSHCN. Feedback on the impact of the waiver will be obtained directly from families that the CMS staff work with and through the family organizations CMS partners with who collect data from stakeholders through their outreach and education events on access to medical care and services. The Managed Care Organizations will continue to play a key role in terms of access to care, especially specialty care for CYSCHN.

To address care coordination for CYSHCN in the overall state system, the New Mexico Quality Improvement Partnership will initiate improvement activities regarding coordination of health care and social services for children in New Mexico who have disabilities and chronic medical conditions. Uncoordinated, fragmented care is a contributing factor to poor health outcomes in the pediatric population of children with special health care needs.  There is an increased demand for services for CYSHCN and families at all levels, necessitating health care from multiple organizations and programs. Initiatives for this multiyear project include improving the coordination of care across service providers for CYSHCN in partnership with the medical home, and improving the transition of youth with special health care needs from pediatric to adult care in accordance with the National Training Center “Got Transition” evidenced-based practices. Activities will include:

• A plan to increase the percentage of patient/family engagement receiving care consistent with the American Academy of Pediatrics (AAP) Bright Futures Guidelines for evidenced-based approaches to care coordination and to provide input to affect the state plan for coordinated services for CYSHCN in the medical home;
• A plan to increase primary care physician (PCP) engagement with CMS social workers and youth with special health care needs and their families as part of the care team around the transition from pediatric to adult medicine based on evidenced-best practice, as referenced in the National Consensus Framework for Systems of Care for Children and Youth with Special Health Care Needs (cyshcnstandards.amchp.org);
• Establishment and maintenance of a care coordination consortium to be a source of information, resources, tools, expert advice, and peer learning and support for pediatric and family practice staff, managed care organizations, Medicaid, family organizations, Title V staff and other service providers who focus on coordinating care for children, with an emphasis on those with chronic conditions and special health care needs and the family- and patient-centered medical home approach.

An initiative for the Newborn Hearing Screening program designed to reduce loss to follow-up of newborns who do not pass their hospital screen is also included in this project.  This initiative will focus on 1) increasing health professionals’ engagement with and knowledge of the Early Hearing Detection and Intervention (EHDI) system; 2) improving access to Early Intervention (EI) services and language acquisition; and 3) improving family engagement, partnership, and leadership within the EHDI programs and EI systems.  The Newborn Hearing Screening program is utilizing a Learning Community model in Sandoval County New Mexico to test changes that can be utilized statewide in hospitals, audiology offices, and primary care provider practices. The Newborn Hearing (NBH) and Newborn Genetic Screening (NGS) Programs will continue to include the medical home during follow-up when an infant is identified through newborn screening.

The NGS program will continue its work with the Mountain States Regional Genetics Collaborative (MSRGC) project that is assessing access to resources and care for families that have a child with a genetic condition and live on tribal lands. This project is parent-driven and targeted at families from underserved regions of the state. The annual MSRGC conference will be held in Albuquerque in the fall of 2019, and the work of the NM State team will be highlighted. There has been a focus on using telehealth to improve access to genetic services for families in rural areas and especially tribal lands and the goal for this upcoming year is to pilot a metabolic outreach clinic in the northwest part of the state utilizing telehealth.

CMS was asked to participate in the first cohort of an Action Learning Collaborative (ALC) with the National Resource Center for Patient/Family Centered Medical Home. The goals of the ALC are to: strengthen systems of services in states; increase cultural competency; and increase health equity in vulnerable and underserved populations of CYSHCN. The state team consists of the Title V CYSHCN Director, AAP representative, a pediatrician, a family representative, and a Medicaid representative. The ALC will begin in the summer of 2019 and last 10-12 months.

To continue to address access to pediatric specialty care in the upcoming year, CMS, in partnership with University of New Mexico Department of Pediatric and Neurology, will increase the number of multidisciplinary pediatric specialty clinics in rural areas of the state by six neurology clinics due to increased need. Clinics currently include cleft palate, nephrology, endocrinology, pulmonary, cystic fibrosis, neurology, cardiology, gastroenterology, and genetics. CMS medical social workers will continue to follow CYSHCN through the multidisciplinary pediatric specialty outreach clinics, as well as assuring that specialists’ recommendations are communicated to the local (community-based) primary care providers.  Without these specialty clinics, many CYSHCN would not be able to access this care.

CMS is also participating in an Integrated Care for Kids grant application, due in the summer of 2019.  If we get this grant it will enable us to demonstrate a new model of care that should hopefully increase access to care for all children in northern NM, while integrating physical and behavioral health and raising the visibility of the CMS program and the work of the medical social workers.

The Birth Defects program will continue it surveillance and outreach to families with birth defects on the twenty-three core birth defects identified by the CDC. The program will continue to work on developing educational materials around each of the diagnoses as well.   Families are linked to community services, CMS social workers, and primary care.

Babies identified with a Neonatal Abstinence Syndrome (NAS) diagnosis code will continue to be reported through Birth Defects Surveillance from all birthing hospitals. Even though NAS is not a birth defect, it is an increasing problem in NM that puts babies at potential risk for birth defects and medical complications. CMS will continue its partnership with Children, Youth and Families in implementing the state plan for Comprehensive Addiction and Recovery Act (CARA )2019, which includes training on Care Plans for all newborns and tracking of these care plans. This is a multi-agency statewide effort to address the needs of children with NAS and to improve the statewide system for children born exposed to substances.

The Title V program will continue to strengthen the existing family networks to help families with CYSHCN be fully prepared, mentored and connected to meaningful opportunities of program and policy partnership and ensure that the Managed Care Organizations (MCO), Medicaid, and state polices that can affect CYSHCN are guided by patient and family voices.

Best practice for care coordination of CYSHCN involves collaborative patient and family-centered care. To continue to address these principles, CMS will sustain family participation in the Maternal and Child Health (MCH) Collaborative, NM Interagency Coordinating Council (ICC), Newborn Hearing Screening (NBHS) Advisory Council, Early Hearing Detection and Intervention (EHDI) meeting, and Association of Maternal and Child Health Programs (AMCHP) Conference.  CMS will maintain contracts with family organizations to ensure that families partner in decision-making at all levels; the scope of work includes participation in local, state and national meetings/conferences, training for staff/families, and an advisory role regarding policy.

CMS will continue to meet with family organizations to discuss ways to improve efforts to ensure that families partner in decision-making at all levels and are satisfied with their care.  Parents Reaching Out (PRO) and the NM Title V CYSHCN program are committed to supporting New Mexico families with children and youth with special health care or education needs, especially those who may be isolated due to language, citizenship status, or geographic location.

We work with diverse cultural, ethnic, and linguistic populations with varying citizenship status within the state of New Mexico. Organizations with whom we partner include: Education of Parents of Indian Children with Special Needs (EPICS), Hands & Voices, Growing in Beauty (Navajo), and Navajo Family Voices. The Navajo Family Voices contract will include support for Navajo families to participate in various activities to promote traditional wellness and resiliency. Trainings specifically around cultural competence entitled “Cultural Signals” will be provided to CMS staff at various locations in the state to assure that all staff receive this training.

CMS will continue to provide funding to PRO to support the family leadership training meeting which will be held both in Albuquerque and in Las Cruces to improve access to families in the southern region of the state. Funding is also provided to EPICS for their family leadership training conference, which focuses on Native American families and attracts over 400 participants annually. The Hands & Voices chapter in NM will also continue to be funded for family-to-family support during early identification of hearing loss in infants. In the summer of 2019 the CARE project will be in New Mexico. The project is a family retreat that is organized and funded by CARE for up to 10 families who have a child, birth to age 4, who is deaf or hard of hearing. The retreats are 2-3-day experiences of informational seminars, family to family bonding time, social activities and break-out groups for moms, dads, siblings and children that are deaf or hard of hearing to build community, advocacy and resiliency.

CMS will also continue its partnership with the state’s lead agency for child welfare, the Children, Youth and Families Department (CYFD).  The CYSHCN/Child Protective project aims to provide CYFD staff with an efficient means to improve overall care of children with chronic medical conditions on their caseloads. CMS social workers provide consultation and co-management for this population as they are specially trained in care coordination for children with chronic medical conditions.  In this partnership, the social workers provide the link between specialty care, patients, primary care offices and dental practices in the local communities. CMS staff in the Regions will continue to provide education and outreach to local CYFD staff to maintain this partnership as there is frequent staff turnover. The CARA collaboration at the state level also provides opportunities for joint trainings and has greatly improved inter-agency communication.

NPM 12: Percent of adolescents with and without special health care needs, ages 12 through 17 who received services to make transitions to adult health care.

Objectives:

• By July 2019, increase by 2% the number of pediatric and pediatric specialty care practices who report that they have written a health care transition policy and/or process to help youth with special health care needs prepare and plan for transition to the adult physical and behavioral health care systems.
• By July 2019, establish a baseline number of youth and their parents/guardians in the Title V Children and Youth with Special Health Care Needs (CYSHCN) program Children’s Medical Services (CMS) who report that they have the knowledge and tools to talk to their doctor about transition and be engaged in the planning process by July 2019.

Strategies:

• Provide training on transition and the Six Core Elements to a successful transition to CYSHCN and their families at the annual parent leadership conference sponsored by Parents Reaching Out (PRO) and EPICS (Educating Parents of Indian Children with Special Needs) and with youth with special health care needs (YSHCN) in the CMS program.
• Collaborate with the Family-to-Family Health Information Center to recruit family leaders to provide input to Medicaid and the Managed Care organizations to the overall system of care for CYSHCN around transition to adult health care.
• Develop quality improvement projects with the NM Child Health Improvement project to engage pediatric providers to increase their understanding of transition and implement processes into their practices based on the evidenced-based model developed by Got Transition.

Transition Training and Quality Improvement

For FY20, CMS social workers will continue to initiate a transition assessment and develop a plan of care for youth starting at age 14 to address youth knowledge and ability to manage medical conditions. This plan also includes education around the use of health care services, daily living activities, what areas they continue to need assistance with or anticipate needing assistance with, living arrangements, transportation, recreation and social relationships and future education and/or employment planning.

CMS social workers will work with the youth to identify adult providers that will assume care during the transition process and assist in addressing health care financing. The social workers will assess eligibility for expansion Medicaid for YSHCN who are 18 to assure continuity of insurance coverage.  For youth that are not eligible for Medicaid or private insurance, the social workers will continue to transition these YSHCN onto the NM High Risk Pool at age 21. The High Risk Pool offers a low-income premium plan that charges monthly premiums based on a sliding scale fee.

Activities related to assisting youth transition to an adult health care provider can still be challenging in many areas, so this will be an ongoing project to work on. The contract with the New Mexico Quality Improvement Partnership (NMQIP) will assist the Title V program with the strategies identified to meet the objectives for improving transition process for youth. The contractor will conduct a needs assessment with CMS staff and providers this year to identify barriers, successes and other areas were improvements could be made when transitioning YSHCN to adult medical care. Part of the goal with this new project will be to work on partnering more closely with the adult providers (either medical home or specialist) through a warm handoff or other strategies to be identified through a Plan, Do, Study, Act (PDSA) approach. This focus on individual community needs is the basis of a successful transition.

CMS had been working on revising a tool that the social workers have been using for many years called the CHUMS. It is wallet sized and holds several inserts where the youth can document their medical conditions, medication, emergency contact numbers, doctors etc. It can be easily updated and brought to appointments to facilitate information transfer from the youth to the providers. It has been very popular with families. In the upcoming year, the CHUMS prototype will continue to be tested and revised.  It has also been translated into Spanish, so that version will be tested also. There have been requests for different formats of CHUMS that will be worked on as well in 2020.  The transition booklets that CMS gives to youth have been updated and this year we will update the Spanish version.

CMS social workers will continue to receive training and support around transition planning with youth, which includes a focus on utilizing the transition care plan in the CACTUS data system to develop specific tasks with timelines and persons responsible for completion for transitioning youth. Our goal is to see better utilization of the care plan by CMS social workers and youth and inclusion of behavioral health needs as well as physical health needs. Trainings on the data system occur monthly and are facilitated by the CMS training specialists along with super users among the staff.

CMS will continue to support the work of the Medical Home portal which does house information on transition and which will be shared with partners and stakeholders as a resource statewide. A PedX talk sponsored by the NM Pediatric Society is being planned for fall 2019 to introduce the Medical Home Portal to pediatricians during their monthly lunch time training meetings.

Partnerships/Family organizations

A transition track at the annual family leadership conference sponsored by the NM Family to Family Health Information Center/Parents Reaching Out, in Albuquerque and now in Las Cruces, will continue to be supported through funding and professional presentations to train families who have CYSHCN.  Transition training is also part of the annual family leadership conference sponsored by EPICS, a parent organization that is geared towards Native American families. CMS will continue to provide funding to EPICS as part of parent leadership training and helps the program serve as a liaison to Native American families in New Mexico. CMS is developing a relationship with the newly formed Navajo Family to Family Health Information Center/Navajo Family Voices and will enter a contractual relationship with them this upcoming fiscal year. A focus will be integrating transition best practices into their curriculum and their work with families and YSHCN on the Navajo Nation. This is an exciting new partnership as we know that there is a dearth of resources and support for families with CYSHCN on the Navajo Nation.

CMS will continue to utilize the Project ECHO Health Care Financing clinics to address challenging issues related to transition. This will be done to highlight the needs of transitioning youth and elicit feedback on policies and practices that have been effective. CMS social workers and other staff will present cases to the ECHO participants to highlight the needs of YSHCN and seek input on solutions.

A new partnership with the Office of School and Adolescent Health (OSAH) in the Department of Health, Health Systems Bureau has been developed and efforts will begin to collaborate on transition education for all youth in NM. OSAH engages in adolescent health promotion and disease prevention activities directly and through collaboration with public and private agencies across New Mexico. OSAH staff guide policy development on school and adolescent health issues and are involved in workforce development and trainings for those providing services to New Mexico youth. They also provide on-going technical assistance and training to school health personnel. NM has an extensive school-based health program. The Adolescent Health Coordinator in OSAH has developed a tool kit under the Title V program, and the goal this coming year is to combine our work around transition to help inform and improve this process for all youth in our state.