NPM 11: Increase the number of CSHCN who receive regular ongoing comprehensive health care within a medical home.

Based on the 2023 MCH-JS, 53.1% of CSHCN age 0 to 17 in PR have a medical home. Previous studies showed a 24.7% for 2010 and a 30.8% for 2014 (PR-CSHCN Survey).

The PR-CSHCN Program has advanced in the selection of strong and evidence-based strategies measures (ESMs) for medical home thanks to the MCH-Evidence Center. Now we have two emerging evidence ESMs connected to medical home, and one moderate evidence ESM connected to HCT. The four CSHCN domain ESMs were evaluated by the MCH-Evidence Center as strong quantifiable measures. 

ESM 11.1: Percent of families at the CSHCN Program who report that they “always” have a care coordinator or other professional available to help them find the services they need.

This measure is linked with the goal of ensuring an enhanced care coordination system at the CSHCNP to improve health care accessibility and integrated services, and to support the expansion of the medical home community at the seven health regions of the island. The ESM has increased during the last three years as follows: 74.6 for 2021, 75.2 for 2022, and 80 for 2023. Last year’s increase may be related to the recruitment of more care coordinators and quality improvement activities at the RPCs.

ESM 11.2: Percent of families at the CSHCN Program who “totally agree” that their child has a better health status thanks to the efforts of the care coordinator to help them access the needed services.

Through this ESM we pretend to understand the perceptions of families about the impact of care coordination services in their child’s health. This measure is linked to the quality of the care coordination services. Results for this ESM may help future strategic planning. The measure baseline was established in 2022 (58%), and showed a slightly, not significant decrease for 2023 (57.4%). 

ESMs have served as a guide for SAP’s decision making. There are other tools that serve as a guide to continue advancing the system of care for the CYSHCN and their families. One of these tools is the Blueprint for Change. With the input from diverse stakeholders, the MCHB identified a set of core principles in 4 critical areas: health equity, family and child well-being and quality of life, access to services, and financing of services. Although different, the four areas are interconnected, and one may influence the other. The PR-SAP’s strategies for NPM 11 (care coordination, family engagement, and family support) may impact at least three of these critical areas in the following ways: 1- care coordination is a key element for the increase of access to services for CSHCN and their families; 2- the growth of family engagement and leadership in the system may impact health equity in the long term; 3- family/professional partnerships and family support may result in an increase of family’s well-being and for that matter, the health and well-being of the CYSHCN.   

From: A Blueprint for Change: Guiding Principles for a System of Services for Children and Youth with Special Health Care Needs and their Families

For the application year, efforts will continue focused on care coordination quality improvement, family engagement and participation, family to family support, improved communication between PCPs/pediatricians and PR-CSHCN providers, and the quality of tele health services.

Meetings with care coordinators will be carried out to hear their experiences and barriers when performing their work, and their participation as members of the health care work team. Special attention will be given to their experiences with the initiative to identify families’ needs using the Family Needs Survey and providing support accordingly. Strategies to inform families will also be addressed. Their inputs will help assess care coordination at the program, identify areas that need improvements, detect workforce development needs, and have better informed decision-making. In addition, other topics will be provided to them such as a refresher of Title V, the impact of care coordination in the health care system, and health equity.

A special activity is being developed which consists of each FESA giving a presentation to their co-workers, including health care providers, about their experiences as a mother of a CSHCN. The purpose is to continue increasing consciousness and responsiveness in the staff about how family representatives are a key component to help them develop family-professional partnerships, and to support them during significant moments with families, such as a family with a recent diagnosis for the child. In addition, information will be provided to staff about health equity, determinants of health, and the levels of family engagement.

Meetings with FESAs and care coordinators will be carried out to explore the possibility of achieving shared plans of care for identified families with children with complex and/or multiple conditions and services that may benefit from this tool. This activity comes as a recommendation from last year’s annual report reviewers. Also, education will be provided to FESAs on family-professional partnerships as well as on data registration to improve the reports about the number of CSHCN and families that are impacted by educational activities and support services at the program. The lack of registered information generates an underreporting by the program.

The PR-CSMND together with the PR-MCAD will develop educative activities and family engagement conversations to be afterwards coordinated for the entire Title V staff. Personnel related in some way to Title V will also be included in this grand activity. The goal is to increase staff awareness about family engagement and to prepare staff to be an active part of including families to participate at all levels. The core Family Engagement Work Team which is comprised of two epidemiologists, three evaluators, a cultural anthropologist, and a family representative, will develop the activities’ logistics during application year. It is expected that more than 350 staff members will be impacted through this activity.  

Together with the QIC and with the support of our psychologists, will try to identify mechanisms to increase integration with mental health services for CSHCN families that need it. Mechanisms may include the identification and promotion among families of how to access mental health services. Families who face chronic stressors related to the caregiving responsibilities of children with complex conditions may have significant psychological and emotional effects, leading to mental health issues. The management of these stressors requires effective coping strategies and may need the access to appropriate resources that promote mental well-being. By acknowledging and addressing family stressors, families can experience improved outcomes.

The Telehealth Program coordinator is developing a survey for the PR-CSHCN health care providers who use tele health. The purpose is to better understand their experiences and needs. It is expected that the survey will be administered during the application year. The results will be used to better understand how the program helps increase access to care, to identify barriers, and to increase efficiency. The Telehealth Program is following the governmental decisions about tele health waivers in case there are changes to be made at the program.

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

The 2023 MCH-JS showed that 22.2% of YSHCN 12 to 17 years of age in PR had a successful health care transition. Previous HCT studies showed a 24.5% in 2010 and 24.7% in 2015 (PR-CSHCN Survey). This may indicate that successful HCT continues to be a weakness in the PR health care system for YSHCN.

The PR-CSHCN Program has advanced in the selection of strong and evidence-based strategies measures (ESMs) for medical home thanks to the MCH-Evidence Center. Now we have two emerging evidence ESMs connected to medical home, and one moderate evidence ESM connected to HCT. The four CSHCN domain ESMs were evaluated by the MCH-Evidence Center as strong quantifiable measures. 

ESM 12.1: Percent of YSHCN who receive care at the RPCs and has completed a transition readiness assessment.

This measure is linked with the goal of increasing the number of YSHCN who have a successful transition to an adult health care provider at the program. The transition readiness assessment is the 3rd core element of the Got Transition model. The readiness assessment gives information to the health care provider about how ready the YSHCN is to start developing the health transition plan together. The MCH Evidence Center found no similar strategy in the established evidence for this NPM. However, the center found that it aligns with Innovation Hub’s Youth and Young Adult Transition, and with Medicaid Managed Care programs using the Six Core Elements of HCT. This measure has decreased during the last three years (71.8% for 2020 data; 71% for 2021 data; and 70.4% for 2022 data). Although the decrease is not significant, the measure has not met the expected objectives and will be addressed during application year.

ESM 12.2: Percent of YSHCN at the CSHCN Program who has a transition action plan in place after completing a transition readiness assessment.

This measure is linked with the goal of increasing the number of YSHCN who have a successful transition to an adult health care provider at the program. By tracking this measure, we monitor the number of YSHCN at the CSHCN Program that are ready for transition and have a transition action plan in place. This is the 4th core element of the Got Transition model. The measure baseline is from year 2021 (57.1%) and showed an increase of 2.6% in 2023 (60%). 

For the application year, efforts will be focused on informing physicians about HCT and HCT processes, educating families, and continue with HCT quality improvement strategies at the PR-CSHCNP.

Physicians are a key component of the health care system. Their knowledge and support to HCT processes will increase the possibility of successful transitions for YSHCN. For that reason, a survey was developed and implemented to collect information about physicians’ perspectives and knowledge about HCT. Findings have been shared with the PR-F2F Center, and with the State Council on Developmental Disabilities (CEDD, Spanish acronym). This served as the starting point of conversational brainstorming on the development of strategic collaborations which will continue to be defined during application year. Findings will also be shared with the PHF and any other interested stakeholder in order to continue encouraging these conversations.

A meeting will be coordinated with the PR-CSHCN Program’s pediatricians to discuss the HCT survey results and how to provide HCT tools for both community pediatric physicians as well as those physicians who serve the adult population. In addition, the program’s referral form for community adult physicians will be discussed. This comes as a concern from some of our pediatricians who believe the form should be adapted and updated. 

The development of HCT educational material for youth, including YSHCN, will be discussed with the Youth Advisory Council and with the PR-F2F Center. The F2F center already has developed educational material, as well as the beautiful diagram shown below. This diagram will be presented to the HCT committee as a possibility to be adapted and shared with families and YSHCN at the RPCs.

 Another HCT tool to be used during the application year is PACMA, acronym for “Puente al Cuidado Médico Adulto”, or “Bridge to Adult Health Care” in English. PACMA is an initiative of the PHF and the Medpeds Residency of the School of Medicine, University of PR. It consists of a web page that provides educational and practical content to adolescents and young adults who received care at the University Pediatric Hospital of the Medical Center of San Juan, have chronic health conditions and are soon to turn 21 years of age (https://www.pacmapr.org/ ). This webpage has comprehensive information about HCT addressed to families. Information about how to access PACMA will be shared with the PR-CSHCN Program staff so that in turn, they share it with families and YSHCN.

After five years of implementing the Got Transition model at the RPCs (2018-2023), the six core elements of Got Transition will be evaluated again to assess progress and changes from the baseline which was collected in 2018. This activity has been delayed, especially because of the Covid-19 lockdown, and it has been planned to be implemented during the application year. The same measurement tool will be used: “Health Care Transition Process Measurement Tool”. This tool scores each of the six core elements.

The HCT committee will continue their meetings to monitor and assure HCT quality improvement at the program. For the application year this includes the revision and update of HCT forms and protocols.

SPM 1: Decrease the age when children at risk for autism spectrum disorders receive their first diagnostic

Based on 2020 data, approximately 1 in 36 children in the US is diagnosed with ASD (CDC-ADDM 2023). Boys are four times more likely to be diagnosed with autism than girls. Most children are diagnosed after age 4. Thirty one percent (31%) of children with ASD have an intellectual disability (IQ <70), 25% are in the borderline range (IQ 71–85), and 44% have IQ scores in the average to above average range (IQ >85). Autism affects all ethnic and socioeconomic groups. Minority groups tend to be diagnosed later and less often. Early intervention is the best opportunity for healthy development and benefits across the lifespan.

Based on the 2023 MCH-JS, the prevalence in PR of ASD in children 3 to 17 years of age is 4.7% (1 in 21). This shows a continuous increase in ASD prevalence when compared to the 2019 MCH-JS (3.1%; 1 in 32), and previous PR-CSHCN surveys (2.5%; 1 in 40 for 2015; 1%; 1 in 100 for 2010). If these data were comparable, it would translate in an average increase of .3% per year.

During present year the PR-DOH was awarded a grant to be part of the CDC-Autism and Developmental Disabilities Monitoring (ADDM) Network. Currently the network consists of 14 states and the jurisdiction of PR. With the technical assistance of CDC, the network reviews health and education data sources of a selected geographically contiguous area to identify and abstract data from cases diagnosed with ASD or other developmental disabilities. The purpose is to track the number and characteristics of 4- and 8-year-old children with ASD or DD in multiple and diverse communities. Through this systematic record review activity, we expect to have more data about ASD in PR within the next years.

Plan for the application year related to SPM 1 will focus on strategies to decrease the waiting lists for ASD evaluations at the PR-CSHCN program. The ASD diagnostic protocol at the program has been revisited to identify and implement strategies that will help comply with the mandate of completing the diagnosis process within 90 days from the referral date. Meetings with the QIC and with key program’s staff will be carried out to discuss how to continue addressing the increasing demand for diagnostic evaluations and how to reinforce evaluations for children less than 36 months of age. Efforts to continue and expand collaborations with the Part C Early Intervention Program will continue to increase the access to early intervention in children less than 36 months diagnosed with ASD or who present the ASD early signs, even if not still diagnosed.

A challenge to be addressed during application year is that the CSMND staff member responsible to coordinate SPM 1 activities was moved to the new PR-ADDM to help implement and coordinate the project. Mrs. Nancy Nieves-Muñoz was the person in charge of programming the education activities for health care providers and other professionals who treat ASD, reinforce CSHCN program’s staff on ASD, promote the use of the Autism Registry, coordinate the distribution of educative material among other activities. As the PR ambassador for the CDC-Learn the Signs. Act Early, Mrs. Nieves-Muñoz will continue to promote ASD early identification and intervention among families and professionals. On the other hand, to continue the implementation of strategies and activities as well as identifying additional mechanisms for SPM 1, an ASD committee will be created during application year. We expect to have representatives from key entities such as the AAP (PR Chapter), Puerto Rican Pediatric Society, Medicaid, Part C Early Intervention Program, Autism Centers, PR-ADDM, health care professionals who serve ASD population among others. This committee will be allied to the BIDA Law Steering Committee.  

 SPM 2: Decrease Prevalence of Neural Tube Defects at Birth
The PR-BDSPS continues using surveillance data to identify at risk population. NTDs pregnancies is one of the most important populations at risk identified by the program. NTD prevalence in PR decreased from 16.0 (per 10,000 live births) in 1996 to 6.0 in 2002. Folic acid intake is recommended in PR since 1994 and enriched grain products were implemented in 1998 (Garcia, 2008). However, in the past twenty years NTDs prevalence in PR has been inconsistent. (See figure below).

NTDs prevalence globally range between 0.3-199.45 (per 10,000 live births).  In America the median prevalence of NTDs from 1990 to 2014 was 11.5 (per 10,000 live births) (Zaganjor, et al 2016). Estimates shows that folic acid consumption and fortification of foods can reduce NTDs prevalence do 5.0-6.0 (per 10,000 live births) (Zaganjor, et al 2016).

According to the “Pregnancy Risk Assessment Monitoring System” (PRAMS) in PR, only 20% of women in 2017 and 2018 reported to have folic acid intake every day before pregnancy. The percentage of folic acid consumption during pregnancy was 85%. This data evidence that health promotion in this matter is needed. 

The PR-BDSPS will continue linking surveillance data, birth, and death records. The PR-BDSPS receives vital statistics data sets and databases for livebirths and death records. This information is used for statistics calculations, data linkages, case ascertainment and to complete missing variables. The PR-BDSPS coordinator/epidemiologist also has access to the birth certificates view-only platform to corroborate the information reported in the case abstraction forms.

The PR-BDSPS is working in an educational campaign of folic acid intake using the PR Department of Health webpage and social media such as: Instagram, Facebook, and Twitter. As part of this campaign the program seeks to promote folic acid intake to prevent NTDs using internet and other virtual sources to impact more people. Also, as part of this campaign the program will update educational material on folic acid intake, birth defects prevention and NTDs.

Identifying pregnancies that have been affected by NTDs can help target prevention and education efforts for future pregnancies. The PR-BDSPS has a strong primary prevention strategy for this population where the mothers are contacted by the program’s social worker (SW) to provide orientation about how to reduce the risk of a recurrent NTD-affected pregnancy. This strategy will be continued.

The PR-BDSPS will continue the publication of the PR-BDSPS Biennial Report. The Report presents the prevalence of birth defects under surveillance and is distributed to collaborators, health care professionals, medical specialists, social workers, and nurses throughout Puerto Rico. It is also published in the PR-DOH webpage. The PR-BDSPS also provides data for the National Birth Defects Prevention Network (NBDPN) biennial report and fulfills data requests from the public, health professionals, hospitals and other agencies requesting birth defects statistics for presentations, small community grants, thesis, and research projects among others.