2019 Annual 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.

 

Strategies:

• Utilize licensed social workers to provide care coordination that includes connecting clients to a medical home and ensuring continuity of care among pediatric and subspecialty providers caring for CSHCN.
• 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 Children and Youth with Special Health Care Needs (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.
• Promote use of the Medical Home Portal (MHP) 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

The focus of the work by the CMS Title V program is to improve the system of care for Children and Youth with Special Health Care Needs (CYSHCN) with a focus on the components of the Medical Home. Children’s Medical Services (CMS) has continued to provide leadership around care coordination that is family-centered and culturally competent for CYSHCN.  According to the National Survey of Children’s Health, in New Mexico while more CYSHCN have at least one health care provider and a place they usually get health care compared to the national average, they face significant disparities in other areas of the medical home model. Ninety-seven percent of CYSHCN have health insurance but in NM far more (61%) than nationally (47%) are insured through public plans such as Medicaid and Indian Health Services.  Twenty-seven percent of CYSHCN had at least one annual visit to an emergency room compared to 18% of children who did not, and 31% of CYSHCN reported having problems getting health care referrals versus 14% of non-CYSHCN. New Mexico CYSHCN also face greater economic hardship than non-CYSCHN, with 54 % of these children living with families with incomes under 200% FPL as opposed to 48% nationally. 

 

CMS employs licensed medical social workers trained in the provision of care coordination for CYSHCN in New Mexico, helping to bridge the gaps in the healthcare system and link families to needed services. This coordination of care across settings leads to an integration of services, which decreases health care costs, reduces fragmentation of care, and improves the experience for the patient and family.  CMS care coordinators worked with practices to connect clients with a medical home and to ensure continuity of care across specialty providers and the medical home.

 

In addition to working on CYSHCN accessing a medical home, CMS social workers and CMS management continued to work to improve three of the core outcomes for all CYSHCN clients.  These outcomes are: 1) families partner in decision making and are satisfied with the services they receive; 2) families of CYSHCN have adequate private and/or public insurance and financing to pay for the services they need; and 3) services for CYSCHN are community based and culturally and linguistically competent. 

Best practice for care coordination of CYSHCN involves collaborative patient and family-centered care. For example, the American Academy of Pediatrics (AAP) identifies the following desirable characteristics of coordinated care within a Medical Home: (1) a plan of care is developed by the physician, child, and family in collaboration with other providers and agencies; (2) all pertinent information about medical care and use of services is accessible to the care team while protecting confidentiality; (3) families are linked to support groups and other resources; and (4) the plan of care is coordinated with educational and community organizations to ensure goals of the care plan are addressed. 

 

Children’s Medical Service (CMS) continued 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 is a member of the Medical Home Portal Advisory committee which is a multistate stakeholder group. This committee meets 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 entered a contractual relationship with the Center for Development and Disability (CDD) Information Network for three years. The CDD Information Network provides information and referrals, 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 occurred over the past year to promote use of the MHP with pediatricians across the State.  

 

Care Coordination and Quality Improvement

CMS continued its partnership 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 focused on identifying other health disparities for CYSHCN. The goal of this component of the project was to identify information from existing data sources which was used to document health and other disparities faced by CYSHCN by analyzing the combined 2016-2017 National Survey of Children’s Health (NSCH). Activities included the development of a policy brief based on NSCH data. The brief was entitled: “Achieving health equity for children and youth with special health care needs in New Mexico”. The brief identified five system-level issues that need the attention from the public sector and public health community. These issues include: Explore How care coordination can be enhanced to maximize participation in programs to reduce the effects of poverty on families with CYSHCN; Find Ways to Increase Access to Medical Homes and Specialty Care for CYSHCN;  Investigate the Intersection of Children with Special Health Care Needs and Adverse Childhood Experiences, Including Coordination of Services; Ensure That Programs and Services for Children with Special Health Care Needs are Culturally and Linguistically Appropriate;  Consider How Best to Meet the Health Needs of Parents of Children with Special Health Care Needs. This brief was disseminated widely to Public Health leaders and elected officials.  Plans are in place to produce two more policy briefs to further explore the intersection of adverse childhood experiences and disability. A summit was being planned for late 2020 with thought leaders in the field of disability and health care to explore the results of the analysis and develop policy recommendations to legislators; however, it will now occur in 2021 because of delays due to the extra work from the COVID pandemic.

 

The second component of the project was to collect self-reported data on the impact of the CMS program and the care coordination provided by the social workers. The goal of this project component was 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.  The data collected addressed the perceived impact of CMS services on health-related and other quality of life indicators.  Activities included developing a client impact survey to be sent to families that was available in both hard copy and online formats; analyzing data from the survey; and developing a needs assessment survey instrument for parents that was disseminated on a statewide basis.

 

The final component of the overall project was to provide additional analysis of the encounter data. The goal of this component was to undertake additional analysis of the dataset captured in FY2019 on encounters by CMS Social Workers. Activities included 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 assisted to further define the role of care coordination for CYSHCN and the value that the Title V program brings to the medical home. It also assisted in laying some groundwork for the needs assessment. The overall conclusions from this analysis was that the care coordination provided by the CMS social worker improved the health and well-being of CYSHCN and their families. The majority of the families that the CMS program  work with are also complex medically and psychosocially and value the holistic work of the social workers to address their needs.

 

To address care coordination for CYSHCN in the overall state system, the New Mexico Quality Improvement Partnership (NMQIP) initiated 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 included 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 included establishment and maintenance of a care coordination consortium to be a source of information, resources, tools, expert advice, and peer learning and support.

 

The consortium includes multiple stakeholders such as 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. The consortium began to meet monthly and discussed topics such as defining care coordination from the perspective of the Title V program, Managed Care Organizations (MCO), and Medicaid waiver programs; how to develop a care map when working with families; and the development of the safe plan of care as part of Comprehensive Addiction and Recovery Act (CARA).

 

NMQIP also led an initiative for the Newborn Hearing Screening program designed to reduce loss to follow-up of newborns who do not pass their hospital screen.  This project  focused 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 utilized 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 continued to include the medical home during follow-up when an infant is identified through newborn screening. This close collaboration helps to assure the infants don’t fall through the cracks and receive the services required.

 

The NGS program continued 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 was held in Albuquerque in the fall of 2019, and the work of the NM State team was highlighted. There has been a focus on using telehealth to improve access to genetic services for families in rural areas and especially tribal lands. The goal for the upcoming year was to pilot a metabolic outreach clinic in the northwest part of the state utilizing telehealth. Due to contracting issues however, this pilot is being pushed into to 2020.

 

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 were 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 began in the summer of 2019 and lasted 10-12 months. The work of the team was to implement a screening tool in the pediatric practice to screen for social determinants of health. The team selected the Survey of Well-Being of Young Children (SWYC). The practice had already been screening for food insecurity and was willing to expand screening for other issues. The ALC is coached by quality improvement (QI) experts to use the Plan Do Study Act (PDSA) process to test small changes and holds monthly coaching calls. If a screen is positive for one of the processes being tested, the practice is to refer the family to the Family to Family Information Center for resources. This is an on-going project and the end result is that the team hopes to create a tool kit to share with other pediatric practices across the State.

 

The Birth Defects program continued surveillance and outreach to families with birth defects of the twenty-three core birth defects identified by the CDC. The program continued 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.

 

CMS also continued its partnership with the state’s lead agency for child welfare, the 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 provided consultation and co-management for this population, connecting specialty care, patients, primary care offices, and dental practices in the local communities. CMS staff in the Regions continued to provide education and outreach to local CYFD staff to maintain this partnership as there is frequent staff turnover.

 

Family Partnerships

CMS continued 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.  The scope of work for these contracts includes participation in local, state, and national meetings/conferences, training for staff and families, and an advisory role regarding policy. Organizations with whom we partnered include: Education of Parents of Indian Children with Special Needs (EPICS), Hands & Voices, Growing in Beauty (Navajo), the Mescalero Apache Early Childhood Program, and the Asian Family Resource Center. CMS continued to provide funding to PRO to support the family leadership training meeting which was held both in Albuquerque and in Las Cruces to improve access to families in the southern region of the state. Funding was 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  also continued to be funded for family-to-family support during early identification of hearing loss in infants.

In the summer of 2019, the CARE project was 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. This retreat was successfully held and served 8 families.

 

A new Family to Family Information Center was established on the Navajo Nation. Navajo Family Voices and CMS began a collaborative relationship. The Navajo Family Voices contract included support for Navajo families to participate in various activities to promote traditional wellness and resiliency. Trainings specifically around cultural competence entitled “Cultural Signals” was provided to CMS staff and managers. The two agencies also participated in joint outreach activities to medical providers at Indian Health Services and at a youth summit held in the spring of 2019 to discuss services and support for CYSHCN and their families by both agencies.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

2019 Annual Report

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:

• Increase by 2% pediatric and pediatric specialty care practices who report that they have a written health care transition policy and 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 2020.
• Establish a baseline of youth and their parents/guardians in the Title V Children and Youth with Special Health Care Needs (CYSHCN) program 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 2020.

 

Strategies:

• The Title V program will 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 Education for Parents of Indian Children with Special Needs (EPICS) and with Youth with Special Health Care Needs (YSHCN) in the CMS program.
• The Title V program will collaborate with the Family to Family Health Information Center to recruit family leaders to provide input to Medicaid and the Managed Care Organizations (MCO) to the overall system of care for CYSHCN around transition to adult health care.
• The Title V program will 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.
• The Title V program will use transition plans to guide conversation with youth and educate them about how to take charge of their own health and life planning.

 

Transition Training and Quality Improvement

In 2019, Children’s Medical Services (CMS) continued to enhance foundational program activities to improve medical transition for Youth with Special Health Care Needs (YSHCN).  According to the National Survey of Children’s Health 21.7 % of New Mexico YSHCN reported having received services for transition to health care compared to the national average of 18.9%. Since 2002, CMS has had an established transition program for YSHCN. Transition guidelines and transition plans were developed by the CMS Transition Team over several years. CMS staff in all five regions of the state utilize the Transition Plans, which have been reviewed by several CMS social workers and YSHCN to assess effectiveness.  The plans have been helpful in raising issues such as employment, secondary school, medical management of their chronic health condition and inspiring youth to think about transition.  They also assist teens in identifying their own needs.

 

CMS social workers are required to use this plan for transitioning youth aged 14-21, ideally as part of the CMS renewal process.  We recommend that transition planning occur every other year for youth aged 14-17 and that the written plan be updated every year for those 17 and older, at the discretion of the social worker.  The transition plan is designed to be reviewed and discussed in person with the client as a tool for promoting conversation about transition topics.

 

CMS social workers complete a transition assessment for youth starting at age 14. This assessment addresses youth knowledge and ability to manage their medical condition, 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, social relationships, and future education and/or employment planning.

 

For medical transition, CMS social workers work with the youth to identify adult providers that will assume care from the pediatric providers during the transition process and assist in addressing health care financing.  NM participates in the Affordable Care Act (ACA) Medicaid expansion, and this has been very beneficial to YSHCN who are 18 because it enables many of them to move onto the expansion coverage when they age out of Medicaid/Children’s Health Insurance Program (CHIP). For youth that are not eligible for Medicaid ACA or private insurance, the social workers transition these YSHCN onto the NM High Risk Pool at age 21. The High-Risk Pool offers a low-income premium plan that offers monthly premiums based on a sliding scale fee.

 

Behavioral health care has been identified as an increasing need for CMS clients, so the transition plan was updated to include questions around behavioral health such as depression, substance use, and suicidality. The CMS social workers have also been trained in ASPYR (Alliance for Suicide Prevention and Youth Resilience), focused on screening and assessment for suicide, building safety plans, and enhancing youth coping skills. This was in response to a recognition that depression, suicidality, and other mental health disorders can have a great impact on YSHCN, and staff requested assistance in becoming more effective and prepared to manage these issues. All staff have been trained in Mental Health First Aid and receive on-going training on working with lesbian, gay, bisexual, transgender, and questioning (LBGTQ) youth.  All of these trainings add to the skill set and cultural competency of the CMS work force to help address transition issues.

 

Assisting youth with the transition to an adult health care provider can still be challenging in some areas of the state. CMS social workers have close working relationships with pediatric providers but feel limited in their connections with adult providers. The program continued to work on partnering more closely with the adult providers (either medical home or specialist) through a warm handoff to help bridge the gap between pediatric and adult providers and to improve the transition and transfer process. The goal was to increase satisfaction of the provider, youth, and family with the transition process.  CMS provides training and mentoring for social workers and medical providers to help providers understand the benefits of partnering with the CMS social worker as well as to help the social worker be comfortable in this role. Many communities have family medicine physicians as primary care providers, which can ease the transition process. This focus on individual community needs is the basis of a successful transition.

 

CMS social workers continued to receive training and support around transition planning with youth. The data system, CACTUS, has integrated the transition assessment and includes a care plan that is co-developed with the social worker and the youth to highlight areas of work that need to be focused on to assist with a successful transition. Regional staff meetings that occur monthly continue the focus on different aspects of transition and social workers earn continuing education units towards their social work licenses by attending these meetings.       

 

The CMS Management team continues to review the materials from Got Transition, the national center that supports evidenced-based transition methodology and other transition resources, and to incorporate questions and processes into the transition plan. As a best practice, the CMS statewide program manager attends webinars and trainings that are sponsored by Got Transition and shares this information with the CMS Management team.

 

CMS has a 2-year contract with the New Mexico Quality Improvement Partnership (NMQIP) who have been assisting the program with provider outreach and awareness. The contract with the NMQIP has assisted the Title V program with the strategies identified to meet the objectives for improving transition process for youth. The contractor conducted a needs assessment with CMS staff and providers this year to identify barriers, successes and other areas where improvements could be made when transitioning YSHCN to adult medical care. Part of the goal with this new project was 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. Unfortunately, it continued to be difficult to implement any direct quality improvement (QI) projects with medical providers, so the QI team focused on how CMS can improve transition work directly with their clients and the providers that they are transitioning from-to.

 

CMS had been working on revising a tool that the social workers have been using for many years called the Client Health Updated Medical Summaries (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. This year, the CHUMS prototype continued to be tested and revised.  It has also been translated into Spanish, so that version will be tested. 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 includes a Spanish version. NMQIP are also Leadership Education in Neurodevelopmental and Related Disabilities (LEND) faculty and the program was fortunate to be assigned a LEND trainee who leads this project and product completion.

 

Statewide/Policy Activities

The New Mexico Care Coordination Consortium is also a vehicle that is being used to provide education and training around youth transition best practice. The consortium began meeting monthly in 2019 and includes participation from MCO care coordinators, school social workers, family organizations, disability advocates, CMS staff, and many other organizations that work with YSHCN. There has been interest with this consortium to spend more time working on youth transition especially from the MCOs.

 

CMS also continued to support the work of the Medical Home Portal (MHP) through participation on the advisory committee. The MHP does house information on transition and acts as a resource statewide. The MHP has received a lot of attention this year from early childhood stakeholders and the NM Pediatric Society. This has led to considerable efforts around outreach events in many communities to promote the use of the Medical Home Portal. The Medical Director of the MHP held a PEDX talk for NM pediatricians to orient them to them MHP including the chapter on transition.

 

Collaboration and training with the Family to Family Health Information Center

A transition track at the annual family leadership conference sponsored by Parents Reaching Out (PRO) the NM Family to Family Health Information Center (F2F) was supported through funding and professional presentations to train families who have children and youth with special health care needs to be advocates for their children and improve understanding of the health care system. A second conference in Las Cruces, in the southwestern part of the state, was sponsored this year as well as the main conference in Albuquerque.  Families throughout New Mexico and some CMS staff members attend this conference.  CMS presented on transition using the Six Core Elements at the PRO conference in Las Cruces this year, which was well received by families in that region.

 

Transition training is also part of the annual family leadership conference sponsored by EPICS (Education of Parents of Indian Children with Special Needs), a parent organization that is geared towards Native American families. CMS continues to provide funding to EPICS as part of parent leadership training and helps the program serve as a liaison to Native American families in the state. These conferences attract over 400 attendees and include families with CYSCHN from other Tribes across the country.  EPICS has started a webinar series on transition as well. CMS will continue to maintain partnership and collaboration.

 

Several years ago, CMS developed a DVD entitled “What Comes Next” which follows three YSCHN through the transition experience and highlights the need for interagency collaboration, which is still relevant today. A curriculum guide accompanies the film and creates a springboard for interaction and discussion with conference participants. The DVD and audience discussion during the presentation continues to raise numerous issues that parents had on issues such as guardianship and the role of their youth’s primary care physician in initiating transition planning. This feedback is helpful in planning subsequent training sessions.