2021 Report

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

Objectives:

-     Increase access to specialty medical care for children and youth with special health care needs by 2%.

-     Improve the system of care coordination for children and youth with special health care needs that is provided by different agencies across the State.

Strategies:

-     Improve access to a family-centered medical home for all CYSHCN by partnering with family organizations that provide parent trainings and advocacy efforts to promote parent/professional partnerships.

-     Explore alternative methods to provide specialty care to CYSHCN in underserved regions of the State.

-     Improve collaboration between the Title V CYSHCN program, Medicaid and the Managed Care Organizations.

-     Promote the use of high-quality care coordination for CYSHCN utilizing the standards developed by the National Consensus Framework for Systems of Care for CYSCHN.

ESM. Number of family trainings completed by partnering organizations that promote parent/professional partnerships.

ESM.  Number of trainings to parents and professionals around care coordination and family centered practice based on the National Framework for Systems of Care.

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

Children’s Medical Services (CMS) continued support to New Mexico’s community-based family organizations who provide leadership and training to parents and guardians for Children and Youth with Special Health Care Needs (CYSHCN) around advocacy and access to supports and services for their children. This includes assuring access to a family-centered medical home. This support aligns with the strategies to improve access to a family centered medical home.

CMS partnered and strengthened 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 (MCOs), 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 sustained family participation in the Maternal and Child Health (MCH) Collaborative, Mountain States Regional Genetics 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. These meetings continued to be remote during this funding cycle. CMS funds contracts with family organizations to ensure that family’s partner in decision-making at all levels and that their needs are met. The scope of work includes participation in local, state and national meetings/conferences, training for staff/families, and an advisory role regarding policy.

Within our vast and diverse state, the aim is always to reach all families, 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 Parents Reaching Out (PRO), Education of Parents of Indian Children with Special Needs (EPICS), Hands & Voices, Growing in Beauty (Navajo), and Navajo Family Voices.

CMS provided funding to PRO to support the annual family leadership training meeting. Lessons learned from the pandemic is that remote opportunities may improve access for families who might not be able to attend due to transportation, need for respite and other barriers. These conferences support the Title V initiatives by training families on what coordinated care should look like and how to access resources if they are experiencing challenges. This year the conference remained remote over a series of 21 workshops. The audience was a cross section of families, self-advocates, CMS staff and other care coordination agencies. Trainings included how to successfully transition a young adult with special health care needs to adult medicine, how to advocate for their child’s needs, especially when it comes to funding issues, what tools families can use to work successfully as a partner with their child’s health care team and other shared resources and supports that might be available in their communities. There were also trainings on the New Mexico Medicaid Waivers, care mapping, SSI from a parent perspective and a workshop on vaccines as part of the “catching up on childhood vaccines” campaign as well as information sharing on the Covid-19 vaccine. The PRO team which includes our Title V Family Delegate and a staff member that meet with families in the neonatal intensive care unit at the University of New Mexico hospital had over 968 one on one interactions with families needing assistance. Our Title V Family Delegate is involved in over 200 state and national campaigns directed at improving systems for CYSHCN. These include various health equity councils, American Academy of Pediatrics (state and national), Medicaid advisory boards, Title V/AMCHP initiatives, and many more health care related committees.

  Funding was also provided to EPICS for their family leadership training conference, which focuses on Native American families with special needs children and attracts over 400 participants annually. This conference also supports the Title V initiatives by honoring Native American traditions and values and the unique challenges around accessing care on tribal lands. EPICS is in the forefront on providing consultation, information, resources and impartial information to families of children with disabilities and special needs. The attend Native American focused meetings on disability in collaboration with city and tribal leaders and Indian Health Services across the State. They have a program to train parents to be parent ambassadors and enhance skills and knowledge about IDEA, Pat C & B, EHDI, assistive processes and self-care.  The Hands & Voices chapter in NM was also funded for family-to-family support during early identification of hearing loss in infants. They partner with EPICS to hold back to school events in the major metro areas for Deaf and Hard of Hearing students and their families. This initiative addresses coordination of care and early access to services.

A contract was maintained with Navajo Family Voices. This partnership focuses on support for Navajo families to participate in various activities to promote traditional wellness and resiliency. By utilizing traditional wellness practices as a culturally respectful approach, staff have seen some success reaching out to families that have CYSHCN who have not been accessing services. Trainings specifically around cultural competence were hoped to be provided to CMS staff at various locations in the State to help us improve our service delivery for indigenous families, but this deliverable was not achieved this year. Partnership focused on continued Covid-19 recovery and resiliency. A series of videos and narrative were collected from families across the Navajo reservation describing what the Covid-19 vaccine means to them. The video series can be found here:

Every video received is now put together in a single hour-long film <https://gcc02.safelinks.protection.outlook.com/?url=https%3A%2F%2Fyoutu.be%2F_f4y4Zho16E&data=04%7C01%7CSusan.Chacon%40state.nm.us%7Cbc81dea122a84c72dc3d08d9c664f841%7C04aa6bf4d436426fbfa404b7a70e60ff%7C0%7C0%7C637758960442367372%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C1000&sdata=OA%2BHnfX1l0g2t7DemRNbVtIuAcZ8geX9We5x7MvPuXs%3D&reserved=0>  at https://youtu.be/_f4y4Zho16E <https://gcc02.safelinks.protection.outlook.com/?url=https%3A%2F%2Fyoutu.be%2F_f4y4Zho16E&data=04%7C01%7CSusan.Chacon%40state.nm.us%7Cbc81dea122a84c72dc3d08d9c664f841%7C04aa6bf4d436426fbfa404b7a70e60ff%7C0%7C0%7C637758960442367372%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C1000&sdata=OA%2BHnfX1l0g2t7DemRNbVtIuAcZ8geX9We5x7MvPuXs%3D&reserved=0

 This has been shared on our Maternal and Child Health webpage.

Improve access to pediatric specialty care

An initiative for the Newborn Hearing Screening (NBH) program designed to reduce Loss to Follow-up of newborns who do not pass their hospital screen focused on 1) increasing health professionals’ engagement within and knowledge of the 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 systems.  The Newborn Hearing Screening program finalized the details to launch a tele-audiology program in the Northwest region of the state. There is a dearth of pediatric audiologists in NM and there has been great interest and support in piloting tele-audiology in Gallup. This is a joint project with NBH (Title V), Indian Health Services, a local community hospital, the Navajo Nation, the NM School for the Deaf and the University of New Mexico Audiology program. Improvements in data collection will also help with the early identification and referral into services for infants with congenital hearing loss. The tele-audiology subcommittee utilized established communication networks in partnership with hospitals and local physicians to share information and collaboration with identified pediatric providers who were members of the McKinley County (Gallup) Tele-Audiology Committee and the tele-medicine marketing workgroup to educate families, community members, early intervention partners, and stakeholders on this new form of service delivery and the opportunities to overcome barriers to care.  In the promotion of this new service delivery, information was included on the spoke and hub strategy and the specifics regarding where new opportunities for care in the local community are created.  Information included the benefits of tele-audiology to families and the ability to obtain pediatric audiology specialty care within the local community and the reduced need for travel to UNMH in Albuquerque, thus providing savings in time, cost, and potential exposure to COVID-19.  The first official patient is expected to be scheduled summer of 2022.

The Newborn Genetic Screening program continued its work with the Mountain States Regional Genetics Collaborative (MSRGC) project New Mexico team that is assessing access to resources and care for families that have a child with a genetic condition and live in rural and underserved areas. This project is parent driven and targeted at families from underserved regions of the state. There has been a focus on using telehealth to improve access to genetic services for families in rural areas, and especially on tribal lands.  Telehealth was utilized effectively during the height of the pandemic and continues to be used for follow-up and other consultation needs. Other project initiatives included distributing the Ether Danlos Syndrome algorithm developed to by the Regional Genetics Collaborative to primary care providers to ease the backlog of referrals to the lone NM geneticist and assist primary care providers in diagnostics and appropriate referrals.

Babies identified with a NAS (Neonatal Abstinence Syndrome) code are continue reported through Birth Defects Surveillance from all birthing hospitals. Even though NAS is not a birth defect, it is noted that many of these babies are at risk for birth defects and medical complications. CMS strengthened its partnership with the Children, Youth and Families Department in implementing the state response to the federal Comprehensive Addiction and Recovery Act (CARA), which includes training hospitals and medical providers on Plans of Care on all newborns and tracking of these care plans. This is a multi-agency statewide effort to address the needs of children and families and improve the statewide system for children born exposed to substances. The CMS Coordinator assigned to this project continues to build expertise and a network of community partners to support families in recovery and to provide wrap around services to improve outcomes. CMS social workers function as care coordinators for infants identified through a plan of care and do not have designated insurance coverage or are receiving health care solely through Indian Health Services.

New Mexico is a largely rural state with most pediatric specialists located in Albuquerque at the University of New Mexico Health Sciences Center (UNMHSC). High poverty rates, lack of transportation, and other socio-economic conditions can make accessing specialty care prohibitive for many families outside of the Albuquerque metro area. In partnership with UNMHSC, CMS facilitates over 160 multidisciplinary pediatric specialty clinics in rural areas of the state including cleft palate, nephrology, endocrinology, pulmonary, neurology, and genetics. CMS medical social workers 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. With the pandemic affecting us all in March 2020 the Public Health offices were quickly closed to non-staff and provision of medical services halted. CMS worked with UNMH to move all specialty care visits to telehealth. CMS helped to facilitate these appointments and continued to provide care coordination. In July 2020 CMS was one of the few programs allowed to re-open partially to begin providing in person specialty visits. Protocols were developed and implemented to maintain safe Covid-19 restrictions. Over the past year these clinics continued mostly in-person, but lessons learned from the pandemic has enabled staff to quickly switch to tele medicine if needed. Anecdotal information from families however indicates a preference to the in-person visits.

Barriers to Specialty Care

We had hoped to conduct a needs assessment in partnership with Title V Epidemiology and Community Based Family Organizations, such as PRO and Navajo Family Voices, to improve understanding of barriers to accessing specialty care including out of pocket costs. This could assist CMS to better inform our state leadership and policy makers on gaps and solutions. Due to conflicting priorities and staffing issues this assessment was not developed. The issue of access and out of pocket costs is a recurring theme and will be re-visited during the next work plan year.

CMS will work to strengthen the partnership between Title V and Medicaid efforts to improve systems of services, integrate health care services and supports, and leverage resources for CYSHCN and their families. The Title V/Medicaid Interagency Agreement provides a mechanism to establish dialogue and partnership.  Most children in NM are Medicaid eligible and thus Medicaid policy drives the pediatric health care system. There are three Medicaid MCOs and New Mexico has benefited from the Affordable Care Act (ACA) as a Medicaid expansion State. This has helped close the gaps in health care access for youth aged 18 and older who had historically transitioned into a system with limited health care financing. Most children in the state are covered by a Medicaid plan. CMS social workers prioritize continuous coverage for CYHSCN and work with families to maintain eligibility and enrollment.

In 2018, Medicaid implemented the revised 1115 Waiver and awarded contracts to 3 MCOs, one of which was new to the state (Western Sky/Centene). Key components of the 1115 Waiver include: care coordination enhancements, cost sharing, patient centered medical homes and integrative behavioral/physical health homes. The Title V program had developed key partnerships with the MCOs. CMS continued to monitor the Medicaid activity as the MCO a CYSHCN is enrolled in can significantly affect access and ability to have health care needs met. There are established partnerships and with Medicaid and the MCO’s which include joint projects which assists with communication and advocacy efforts.

NM Medicaid is also undergoing a complete overhaul of its information system with a new project called MMIS 2020. CMS is linked programmatically to Medicaid rules and statues and has been invited to participate in several workgroups such as billing and claims, provider enrollment, and reports. One of the goals is to create a data warehouse that can be accessed by agencies. CMS will continue to participate on workgroups and provide input on the needs of CYSHCN and their families. The building of this system continues.

Care Coordination and Quality Improvement

To address care coordination for CYSHCN in the overall state system, the contract with the New Mexico Quality Improvement Partnership was maintained. This project includes improvement activities to address the coordination of health care and social services for children in New Mexico who have disabilities and chronic medical conditions. Complex and uncoordinated care is a contributing factor to poor health outcomes for CYSHCN.  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 promotion and maintenance of the NM 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. The standards developed by the National Consensus Framework for Systems of Care for CYSCHN and Bright Futures are utilized as evidenced-based recommendations to be used by entities providing care coordination. Monthly meetings are held with a focus on building relationships between providers, and families and increasing access to information for both. This includes reviewing and discussing each domain from the National Consensus Framework and how it aligns with each agency’s work.  It is a collaborative learning process.

Children’s Medical Services (CMS) continued to support the medical home concept in New Mexico through the Medical Home Portal (MHP), which provides accurate and comprehensive information on health information and community resources for families and medical providers in English and Spanish and many other languages under Google translate. The CMS Program Manager participates in the Medical Home Portal Advisory committee. This committee is a consortium of States utilizing the portal who review the metrics, usefulness, and accuracy of portal information pages to the University of Utah staff who manage it. The goal is always to provide input into additions that would be helpful for New Mexico families.

CMS maintains a contractual relationship with the Center for Development and Disability (CDD) Information Network to support the MHP through their Information Network. 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, 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. The CDD staff in collaboration with the PRO family liaison staff begin holding demonstration and information webinars again this funding year and provided over 20 trainings to promote understanding and use of the portal. This partnership assists CMS to continue making information available about New Mexico community services for CYSHCN to families and the healthcare providers who care for them through the Medical Home Portal.  The New Mexico Pediatric Society is a supporter of this initiative and a representative from the Society participates in the monthly stakeholder meetings.

Children’s Medical Services (CMS) continues to provide leadership around care coordination and youth transition that is family/youth-centered and culturally competent for CYSHCN.  CMS employs licensed medical social workers (LMSW) trained in the provision of care coordination for CYSHCN from birth to age 21 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. In rural areas, CMS is seen as the only program that addresses the needs of CYSHCN. The CMS program, with its revenue source from Medicaid billing, focuses efforts on maintaining staffing in all regions of the State, and defends the need and value of the work of the LMSW in their communities to upper management.

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.  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.  The work of CMS promotes these goals. With the height of the coronavirus pandemic behind us, we reflect on all we have been through as well as lessons learned. The program will take some time to review as we were quickly forced to change our practices, switch to telehealth and other methods of delivering care. We forged new partnerships with non-traditional agencies, such as emergency managers, first responders, food banks, churches and many others. Those of us in the CYSHCN community did find ourselves at different “tables” and these new relationships can only benefit our work as we strive for more comprehensive integrated care.