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

The medical home model is promoted by the AAP as primary care with the goal of addressing and integrating high quality health promotion, and acute care and chronic condition management in a planned, coordinated, and family-centered manner. The CSHCNP contributes to the medical home neighborhood by communicating and connecting with primary health clinics, identifying CSHCN and family needs, and providing service coordination and support. The CSHCNP continues to implement activities to impact the public health system in areas like access to care, health care services integration, family-centered care, and quality of care. Following is a description of activities and strategies for the medical home priority, based on MCH essential services.

Providing access to care

Navigating the health care system can be difficult, especially for families whose child has recently been diagnosed with a chronic condition. Adequate care coordination can result in enhanced families’ interactions with the health care system. Service coordination is a continuous activity at both the central and regional levels of the CSMND and CSHCNP. At the central level, the PR-BDSPS Service Coordinator refers families to the CSHCNP, Part C Early Intervention system, and care providers such as the Spina Bifida and Hydrocephaly Association, the Down Syndrome Association, the Technology Dependent Children Program, and the Jarcho Levin Team. PR-BDSPD nurse abstractors also refer cases as necessary. The PR-HDDDTP Service Coordinator gives support to the PR-Neonatal Screening Program (PR-NSP) coordinating confirmed cases of core RUST. She also refers cases diagnosed with genetic conditions to the Medical Genetic Clinic at the University Pediatric Hospital, Medical Center. At the regional level, Title V Service Coordinators continually offer care coordination services to families with CYSHCN.

A Registry for Technology Dependent Children was created in 2017 as a response to Hurricanes Irma and Maria. At the moment, a total of 170 families have been identified and registered. A Service Coordinator was recruited to give follow-up to this population. He takes care of identifying families’ needs, link them to needed services, and has offered support to develop individualized emergency response plan for each family.  

In January 2017, the Zika Health Care Services Program (ZHCSP) funds were awarded to the PR Health Department by CMS to support the Department’s efforts to provide and expand health care services to all pregnant women and of childbearing age, infants, and men adversely or potentially impacted by the Zika Virus infection. All strategies and outcomes are aligned within four components: 1) increasing access to contraceptive services for women and men, 2) reducing barriers to diagnostic testing, screening and counseling for pregnant women and newborns, 3) increasing access to appropriate specialized healthcare services for pregnant women, children born to mothers with maternal Zika virus infection, and their families, and 4) improving provider capacity and capability. The CMS-ZHCSP was transferred to the CSMND in April 2018, under the leadership of the Title V-CSHCNP. Under this Program, a contract with the UPR Medical Sciences was signed in July 2018 to conduct 4 to 6 monthly clinics at the Metropolitan RPC for each of the following disciplines: general pediatrics, pediatric infectious diseases and pediatric neurology. This contract was recently amended to conduct up to 8 clinics, adding the Ponce and Mayaguez RPC for pediatric neurology and pediatric infectious diseases.  The amendment is effective from July 1, 2019. A Service Coordinator was recruited to give follow-up to clinics’ appointments.

Since June 2017, ZAPSS Data Managers run weekly queries to identify families that have moved out of PR. When families move to another USA jurisdiction, ZAPSS staff contacts the jurisdiction’s epidemiologist to report the case and the woman and infant’s laboratory test results. ZAPSS staff also notifies the Zika MCHB Services Program Lead Service Coordinator so that they can tract the family and help them connect with services at their new location. The Lead Service Coordinator also notifies the ZAPSS Coordinator of families that have moved to ensure the ZAPSS database is updated. In the event that a family decides to return to PR, the Lead Service Coordinator and/or the referring jurisdiction’s epidemiologist will notify the ZAPSS Coordinator. As of May 2019, 413 families that moved out of PR, and 84 who returned to PR were identified. As part of the activities of a new project, the ZAPPS’ Social Worker is communicating with all families that relocated after Hurricane Maria to corroborate their current residence, if they are still off the island, if they plan to return, and if a pediatrician served the infant while they were in PR. This project began in April 2019.

Quality Improvement

Quality of care is an essential component of the medical home model. Well-planned protocols and processes are necessary to continually enhance quality of care. On June 1, 2018, thirteen (13) CSHCNP pediatricians and State level staff met with the CSMND Director to discuss how to improve protocol processes and forms at the RPCs for CSHCN and for infants/children born to possible Zika positive pregnancies. The ASD protocols were also discussed.

Clinical appointment non-compliance is a common cause of failed medical action. The CSHCNP assessment on family compliance with clinical appointments during July to September of 2016 revealed a range from 27% to 45% of absenteeism and a Program’s general rate of 33.25%. Services assessed were pediatrics, nutrition, audiology, psychology, social work, physical therapy, occupational therapy, and speech and language pathology. Visits to the pediatrician resulted in the highest rate of absenteeism (45%) followed by nutrition and physical therapy (37% and 33%, respectively). During 2017, an appointment reminder system was implemented at the RPCs in an effort to reduce family absenteeism rates. Service coordinators and social workers, as well as health professionals (physical and occupational therapists, speech pathologists, psychologists and nutritionists) are revising their family appointment agenda and giving a reminder call 48-72 hours previous to the appointment. Natural year 2017 resulted in a 2% reduction of absenteeism rates (31.15%). Natural year 2018 had an increase of 1% (32.08%). Visits to pediatricians continues to be one of the highest (42.5%). Currently, each RPC is developing a format to collect data on reasons why families may be absent. This is a developing activity to better understand families’ barriers to comply with appointments. This activity will continue during the coming year.   

 

One of the accomplishments of the Quality Improvement Committee (QIC) was the creation of RPCs work teams composed of health care providers representing some or all of the RCPs and who have been meeting during the year. These meetings encourage dialogue among health professionals and colleagues, and help increase quality and integration of services within RCPs. Work teams which met during the last fiscal year are composed of physical and occupational therapists, speech pathologists, social workers, psychologists and RPCs administrators. They have developed a Procedures Manual for each of the disciplines that includes pertinent objectives and operational processes, flowcharts and formats. Six meetings were carried out between February 7 and April 6, 2018. The State level is supporting and facilitating these meetings. This activity will be continued during the application year.  

The QIC continues to meet at least quarterly to discuss the updates of the QI Work Plan and share experiences within RPCs. Completed QI Work Plan activities are: the development and implementation of Clinical Procedures Manuals per health discipline, a Service Coordination Manual, a Procedures Manual on Information to Families and a Transition to Adult Health Care Manual. Activities that are continuous are: maintain a clinical appointment reminder system, inform and empower families, and give follow-up to the processes to implement the EHR and Tele-Health systems. The QIC also achieved the completion of an Administration Procedures Manual for the CSMND. The Manual includes the Operational Plan for Emergency Management which was developed by the Readiness and Coordination Office for Public Health Response, PR-Department of Health. The QIC is composed of RPCs medical directors and administrators, key service coordinators and social workers, the CSHCNP Family Representative and two families. The QI Work Plan continues its focus on the five State priorities for CSHCN and their families.    

Partnerships and collaborations

To enhance the medical home, the National Academy for State Health Policy (NASHP) promotes the collaboration between key agencies like Medicaid, Title V, Early Intervention and the Department of Education. The CSHCNP understands the importance of developing collaborations with the PR- Health Insurance Administration (PRHIA). The PRHIA was created under Act #72, on September 7, 1993 to negotiate and contract health insurances to serve GHP eligible citizens. It also has the responsibility to monitor and evaluate the services offered by the insurance companies in order to ensure compliance, quality and cost effectiveness. Two meetings have been carried out with the PRHIA’s Specialist in Clinical Issues to identify opportunity areas for the enhancement of medical home. As of April 10, 2019, topics discussed are the enhancement of data sharing, and the identification of strategies for a better understanding of care coordination and case management for the CSHCN population. The PRHIA has also expressed interest in incrementing their staff’s knowledge on Title V. This is a cutting edge activity and meetings will continue during the application year. Other agreements underway are directed to: include all the participants of the Autism Special Coverage in the PRDOH Autism Registry, include children diagnosed with hearing loss under the GIP special coverage, and add counseling psychology as a discipline qualified to diagnose ASD.

Partnering with other programs and agencies continues as a key activity to strengthen programs’ capacity, enhance integration, and support the delivery of comprehensive, coordinated health care for CSHCN and their families. Collaboration with the PR-FQHCs continues for health care coordination for infants born to mothers with laboratory evidence of possible Zika virus infection during pregnancy. This is done through the dissemination of available services, guidance to families, training of professionals and families, and referrals of cases to RPCs. The Division shared a digital version of the Passport to Health with the PR Association of Primary Health to be printed and distributed among their 75 Centers throughout PR. One of the PR-UNHSP’s key collaborator is the San Gabriel School for the Deaf, which provides support to families, assuring timely and appropriate early intervention services. The Demographic Registry Office collaborates with the Program by sharing newborns’ demographic information that helps reduce the lost to follow-up. Collaboration with the PR Academy of Audiology helps promote the PR-UNHSP among audiologists and increase awareness about the importance of documenting and communicating the diagnostic evaluation results to assure the appropriate early detection and intervention. Another collaborative agreement was developed between the CSHCNP and APNI. Through this agreement, APNI collaborates with the developmental monitoring and health services promotion to families of infants and children born to mothers with laboratory evidence of possible infection by the Zika virus during pregnancy, by means of the disclosure of available services, orientation to families, training of professionals and families, and referrals of cases to the RPCs.

Family Participation

Thirteen (13) Family Engagement and Support Advocates (FESAs) were contracted thanks to the MCH Zika Services Program funds with the main purpose of enhancing family engagement, informing families, supporting parents navigating the health system, and participating in the CSHCN Program quality improvement activities. All FESAs are either a mother of a CSHCN or had a lab result of possible Zika infection during pregnancy. This is the first experience in the CSHCNP at the RPCs to work with families as part of their staff. Most FESAs started working in September, 2017. In addition to their roles, they have integrated other activities such as coordinating educational and social activities for families, and helping with siblings while families talk to health professionals. During last fiscal year, they developed or supported a total of 13 activities with topics as bullying prevention, suicide prevention, family empowerment, respite and friendship. Currently, the CSMND Specialist in Health Education is training them to improve their logistics when developing these kind of activities. FESAs have resulted to be a great support to CSHCNP staff, and health care providers are referring to them the families identified in need of support.  On June 23, 2018, the FESAs participated as presenters in the conference, “Arboviral Diseases Diagnosis and Clinical Management, after the 2016 Zika Epidemic, 2018 Update” to share their knowledge and experiences. The scientific component of the activity was organized by the CSMND. The plan for the application year is to continue including this staff as subject experts in the CSMND sponsored educational activities.

Workforce capacity development

Professional, qualified and multidisciplinary workforce is vital for an effective public health system. Ensuring such a workforce requires constant training and education. The CSMND’s goal is to maintain a well-trained and prepared staff, but also, to reach out to health professionals outside the Division. This has been done participating in external activities such as symposiums and professional annual conferences.  

A workshop about medical home was held on April 26, 2018 for all CSMND service coordinators and FESAs at the American University in Bayamón. Main purpose was to increase their awareness about the medical home model. Service Coordinators and FESAs meet monthly to discuss protocol processes, receive trainings, share family support activities and discuss cases. Workshops on medical home elements will continue to be carried out as necessary.

Family-professional partnerships are a key element in promoting the health and well-being of children. These partnerships enhance communication between professionals and the family, improve information sharing and increase the effectiveness of shared decision-making. However, many health professionals still work under an outdated paradigm. To address this, a Family Inclusion Committee was created with the purpose of increasing family participation and family-professional partnerships within the Title V staff throughout the Island. The main strategy was to educate Title V regional staff on the importance of family participation, because this staff works directly with families. The Committee was composed of two MCHD Social Workers, the MCHD Cultural Anthropologist, the CSHCNP Evaluation Specialist, the CSHCNP Family Representative, and two community family representatives. The team agreed on a Family Inclusion Work Plan that included a workshop about family-professional partnership developed by the MCHD Cultural Anthropologist. The workshop promotes the perspective of families as allies, not simply as beneficiaries. Family inclusion workshops were carried out at each health region, for a total of seven workshops. With the title, “Inclusion of Families in Title V”, the workshop consisted of four (4) sections: 1- workshop’s objectives and Title V refresher, 2- families as valuable resources of the public health system, 3- understanding the different approaches of health care providers towards families, and 4- a think tank on family participation opportunities at each professional’s work environment.  A team composed of the Family Inclusion Committee members, MCH Youth Advisory Council members, and four CSHCNP FESAs carried out the presentations. During 2018, the workshops were provided on: February 21 and 28; March 7, 14, 21, and 28; and April 11. Two hundred seventy six (276) staff attended the workshop.  

A workshop on best approaches to CSHCN families was carried out on February 16, 2018 to CSHCNP health professional staff. FESAs participated by sharing their experiences as CSHCN mothers and by performing a role-play. Forty three (43) health professionals and service coordinators attended this workshop.

 

 

 

The ZAPSS Pediatric Consultant and the CSMND Health Educator carried out a third round of educational visits to birthing hospitals. Information shared was related to the Zika administrative order (#388), birth defects possibly associated with Congenital Zika Infection in infants born to a mother with possible Zika virus infection during pregnancy, correct measurement of head circumference, pulse oximetry, and the distribution of the Intergrowth-21st Guide. From August through September 2018, fourteen (14) birthing hospitals and two RPCs were visited, reaching one hundred thirteen (113) health care professionals, primarily nurses. This activity continues during the present year.

Other educational activities are summarized in the table below. These activities were carried out by Title V Central Level staff. Educational activities carried out by Title V CSHCNP regional staff are not included in the table.

 

 

Strengthening access to care: educating and informing families

The CSHCNP has a history of collaborative agreements with the PR-Parent Information and Training Center (APNI). APNI is a non-profit organization that has served families for over 30 years. Its staff is comprised of families with CSHCN. At the moment, APNI is working in collaboration with the CSHCNP under the HRSA project: “Optimizing family support to families of children with or at-risk of congenital Zika Virus infection”. The main purpose is to reach-out to families and educate them on prevention and protocols for the health follow-up of this population. On September 27, 2018, a workshop on the medical home model and on how to navigate the health care system was provided for families. The workshop included information on how to develop a collaborative relationship with their child’s primary care provider, how to participate in decision making related to their child’s health, and how to navigate the health care system to obtain the services their child needs. This activity was carried out in the PR Autism Center for six families. Currently, this activity is being carried out for other sites on the Island. Workshops about other topics are also being offered to families through this collaborative agreement.

There is evidence about the need of CYSHCN families to access information on a variety of topics such as how children grow and develop, child’s condition, supporting child’s learning and development, managing child’s behavior, services available for the child in the present and in the future, and transition to adult life. To address this need, QIC members created a Procedures Manual to Inform Families. From February 26 to May 1, 2018, a total of eight meetings were held with staff at the seven RPCs and the two Autism Centers to discuss the Manual. In addition to informing families, the protocol address the promotion of services that are available at the seven RPCs and the two Autism Centers. Currently, a needs assessment is being carried out among CSHCNP families to identify specific information needs with the purpose of coordinating educational activities and discussions with families. The list of possible topics includes matters of interest for youth with special health care needs and their families. 

The CSMND has developed multiple written material for families to be distributed at health fairs and other community activities. This is a strategy of health promotion and education to the general public that can result in the improvement of the health status of families and communities, including families with CSHCN. Families’ knowledge about existing services and supports at the community level also leads to an increase in access to care. The CSMND Health Educator is a key collaborator in the coordination of educational activities and in identifying community activities and fairs where Title V staff may have the opportunity to participate.

Last year, the Division participated in eight community health fairs and two workshops for the general public where at least 650 people participated. The workshop “La importancia de los beneficios de la vitamina ácido fólico” (The Importance of the Benefits of the Folic Acid Vitamin), was given on July 10 and 11, 2018 at Plaza Las Americas, the largest shopping center in the Caribbean. Seven (7) health fairs where Title V central staff shared a table with written material were in Fajardo, Adjuntas, Hato Rey, Santurce and Isla Verde from April to September, 2018. The CSHCNP at Fajardo led the community health fair, “Feria de Salud y Divulgación de Servicios: Autismo”, on April 20, 2018 with the collaboration of the Fajardo Municipality. This activity was carried out at the Plaza in the Center of the town. Fifteen (15) public and community entities and programs participated, some of which were: Fajardo WIC Program, Fajardo Launch Project, Puerto Rican Epilepsy Association, Department of Health Community Reach Out, and the Department of the Family.

Below is a table of some of the educational material distributed at community activities during last fiscal year. It is estimated that more than 40,000 brochures and written material have been distributed to CSHCN families and the general public during the last fiscal year.  

 

 

Evaluation

Family-centered care and continuous quality improvement is also about listening to family voices. Families have always participated in the CSHCNP needs assessments and surveys. However, strategies are being developed so that families may have continuous access to express their satisfaction, and provide inputs, concerns and recommendations about the Program. A Family Survey was implemented at the CSHCNP to collect information on: 1) CSHCNP family centered care, 2) access to CSHCNP services and 3) family satisfaction. The survey was distributed at the RCPs from February to August 2018. As of August 23, 2018, a total of 489 families had participated in the CSHCNP Family Survey, of which 255 were families with CSHCN. Of the 255 families, more than 90% of families reported they are receiving information regarding health services for their child, and how to access services, including pediatric specialists at the CSHCNP RPCs. Regarding community support, and health insurance or other financial support, a smaller percent of families, 76.5% and 78.4% respectively, reported they are provided the needed information. Close to eighty percent of families (87.6%) reported easily or very easily obtaining information and support from CSHCNP staff, 88.1% reported being satisfied or very satisfied with the support received, and 94% agreed that they feel more skilled and confident to manage their child’s condition after the CSHCNP intervention. Ninety six percent (96%) agreed that Program staff make them feel as part of the team and decision making, 96.1% reported they are carefully heard by staff, and 92.1% agree that Program staff consider their difficulties and try to facilitate access to services. Most frequently reported barriers were: parking fees and food costs (24% and 22%), having to miss work (20.4%) and time in the waiting room (16.2%). Barriers differ within RPCs.

An open question for recommendations was answered by 111 families. Most frequent recommendations were: 1- to shorten waiting time to be attended by the pediatric specialists, 2- provide toys, music or other entertainments for children while they wait, 3- improve infrastructure and appearance of some of the CPs, 4- lower parking costs (especially when the family spends hours in the CP).

Family Survey results were reported to the QIC on September 21, 2018. Next, the Evaluation Specialist and the Auxiliary Director visited the seven CPs from November 9 to December 4, 2018 to present the results to all CSHCNP staff who work directly with families. A total of 161 health and social providers went to the presentations.

 

Increase the number of CSHCN aged 12 to 18 years who receive adequate support and services for their transition to adult health care (NPM 12)

Health care transition is the process of changing from a pediatric to an adult model of health care, and the medical home model is the ideal platform to support this process. Changing doctors is never easy, much less for a teenager with a chronic condition and new to advocating for his/her own health care. YSHCN and families need support and guidance during this process. The Got Transition model is a best-practice model that aims to improve transition from pediatric to adult health care. The implementation of this model at the CSHCNP started on March 2018.

The Transition to Adult Health Care Sub-Committee is part of the QIC. It was created to identify strategies to improve the transition process at the CSHCNP. It is comprised of CSHCNP social workers, service coordinators and two family representatives; a total of 13 members. In August 2017, this group completed a Transition to Adult Health Care Procedures Manual based on the Got Transition six core elements. The Manual also contains a transition plan of care for families of YSHCNs who lack potential for independent adult life.

Between September 14 and December 13, 2017, five meetings were carried out with RPC staff to present and discuss the Manual, educate about the six core elements, and inform about the roles of youth, parents, pediatricians, other health care providers and the adult health care provider during the transition process. A total of 116 health providers, social workers and service coordinators attended these meetings.

The implementation of the six core transition elements began with special focus on the first two core elements: 1- transition policy and 2- tracking and monitoring. An electronic copy of the transition policy was sent to all RPCs directors. Each RPC has posted the policy in visible places for families to see, and are sharing it with families who have CSHCN 14 years of age or older. Tracking has been a challenge for all of the RPCs because of the hundreds or thousands of hard copy health records of children with the possibility of being within the target ages. Implementation of an EHR system is still in process, so each RPC is creating its own strategies to track cases, and all RPCs are capturing YSHCN that visit the Center. From March 1 to September 30, 2018, RPCs received a total of 441 YSHCN visits, and have conducted 121 transition readiness assessments (27.4%). Of the 121 cases, 38 are between the ages of 19 and 21, 58 are between 16 to 18 years old, and 25 are 14 or 15 years of age. Some RPCs are not yet collecting information on the number of cases unable to contact. This implementation process will continue during application year.

In order to monitor progress of the six-core transition element implementation, a survey was carried out among CSHCNP providers for a baseline measure. The Health Care Transition Process Measurement Tool for Transitioning Youth to Adult Health Care Providers was adapted and administered at the seven RPCs between February and March 2018. A total of 80 CSHCNP providers participated. The measurement tool has indicators with assigned weights for each core element, and collects the participants’ perceptions about the indicator at their work-place. Each core elements is scored depending on the participants’ answers for each indicator (yes or no),. The first core element, “Transition policy”, resulted with a score of 9.4 out of 16 (59%). The second core element, “Tracking and monitoring”, resulted in a score of 3.72 out of 7 (53%). The third core element, “Transition readiness assessment”, resulted in 46% ; “Development and implementation of transition plan” resulted in 40.4%, “Transfer to adult health care” resulted in 46.3% and “Finalizing the transfer” resulted in 32.9%. Health providers’ perceptions varied greatly depending on their duties. Social workers and service coordinators tend to perceive a higher degree of core transition elements’ compliance in comparison to other health care providers.

 

The Transition to Adult Health Care Sub-Committee continues its efforts to enhance transition processes. Three months after Hurricane Maria, the Sub-Committee returned to its regular meetings, and now are working on strategies to address the following identified issues: 1- lack of YSHCN knowledge in topics like sexuality, health habits, decision making, and budget management of YSHCN and their families; 2- barriers to transition to an adult health care provider of YSHCN who live out of the metropolitan area; and 3- health care providers better understanding about matters pertaining to YSHCN. The Sub-committee invited the CSMND Health Educator to help them in the development of strategies to address these issues. This activity will continue during application year. 

The Sub-Committee developed two brochures on transition to adult health care. One is addressed to pediatricians and the other is addressed to families. Its purpose is to increase awareness on the processes of a successful transition and the services and supports offered at the RCPs on transitioning. The brochures are being distributed to families at the RPCs and in educational activities where the CSMND participates.

Combined Internal Medicine & Pediatrics (Med-Peds) is a residency leading to Board Certification both in Internal Medicine and Pediatrics. A physician trained in Med-Peds can care for the newborn to the geriatric patient, which makes them ideal health providers for the YSHCN health care transition process. In July 2014, a Med-Peds Program was inaugurated at the School of Medicine, Medical Science Campus, University of PR. CSHCNP Auxiliary Director and Evaluation Specialist coordinated a meeting with the Director of the Medical Science Campus Med-Peds Residency, Dr. Arelis Febles, and her assistant Dr. Lisette Lugo. The meeting was held on June 20, 2018 with the purpose of discussing possible agreements in the area of transition to adult health care providers. Formal agreements were unable to take place because the program had only two students who have just graduated and are planning to pursue other subspecialties out of PR. However, both physicians offered the following: 1- transition should be a curriculum requirement for medicine students, 2- pediatricians should provide support to the adult health care provider who will follow-up their patient, 3- families and YSHCN should be educated on the difference between the pediatric and the adult health care settings.

The Inborn Errors of Metabolism (IEM) Clinic for the adult population was created under State Law #139, August 8, 2016, beginning operations in August 2017. It is located at PR Medical Center and provides bi-monthly health care, prevention and treatment to the PKU population. When newborns are confirmed with an IEM in PR, they are usually referred to the CSHCNP where they can be monitored until 21 years of age. With this new clinic the CSHCNP, as well as the PKU Patient Society, have the opportunity to refer PKU youth for follow-up after their 21st birthday. From August 2017 to May 2018 the Clinic has served 36 PKU patients. The IEM Clinic is composed of a team that includes a Geneticist, a Family Physician, a Clinical Psychologist, a Social Worker, two nurses, a team of nutritionists, and a staff of three for administrative and organizational purposes. Puerto Rico has nearly 60 cases of PKU.  

The Metro RCP Social Worker coordinated three educational activities on April 4, May 11 and June 26, 2018 to educate families on diverse topics including the health care transition process. Dr. Mitchlery Cardona, Clinical Psychologist, the Vocational Rehabilitation Program, APNI, Hogar Ruth for Domestic Violence Prevention and Special Education Program collaborated in providing orientation. Information on sexuality and transition to adulthood was also provided. A total of 54 families participated in these activities.

Decrease the age when children at risk for Autism Spectrum Disorders receive their first diagnostic evaluation

CSMN Division staff integrated the priorities of the Autism Spectrum Disorders Steering Committee (ASD Steering Committee) with the strategies presented in the State Action Plan for October 2017 to September 2018: 1- Continue the distribution of educational material to health professionals to increase awareness of early signs of ASD and promote the use of ASD screening tools, 2- Continue the distribution of educational materials about developmental milestones and early signs of ASD to families in general, 3- Continue the promotion of ASD screening at 18 and 24 months of age among health providers, as mandated in PR-EPSDT, 4- Continue the promotion of the ASD Registry among health providers and the importance of registering patients with positive ASD diagnosis, and promote the use of the “Screening Certification Form” among pediatricians, PCPs and other health care providers.

The ASD Steering Committee, created by Law #220 of 2012, Law for the Well-being, Integration and Development for People with Autism (Ley BIDA, Spanish Acronym), under the leadership of the Title V CSHCNP, developed an Action Plan for the Act’s implementation based on the following processes: development of alliances, analysis and planning, evidence-based paths designs, clarification and procurement, and quality services provision. The ASD Steering Committee’s 2017-2018 work was focused on the following priorities strengthening early identification and diagnosis of children with Autism Spectrum Disorders (ASD), strengthening the ASD Registry, identifying evidenced based practices for planning for interventions, competencies for first responders and establishing mechanisms so that professionals who work with children with ASD and their families comply with their discipline’s competencies. At the same time the CSMN Division continued working toward lowering the age at which children with ASD are diagnosed.

The efforts and activities directed toward these priorities are presented below.

Early Identification and Diagnosis of ASD

This ASD Steering Committee’s priority corresponds to the following State Action Plan strategies: Continue the distribution of educational material to health professionals to increase awareness of early signs of ASD and promote the use of ASD screening tools; Continue the distribution of educational materials about developmental milestones and early signs of ASD to families in general; Continue the promotion of ASD screening at 18 and 24 months of age among health providers, as mandated in PR-EPSDT; and promote the use of the “Screening Certification Form” among pediatricians, primary care providers and other health providers.

To promote the early identification of developmental delays and ASD, the booklet called “Passport to Health” (Pasaporte a la Salud), that was developed by the PRDOH with the purpose of informing families about children’s growth and development and of warning signs for developmental delay and ASD from birth to five years of age, continues to be distributed to families when they register their newborn at their local Demographic Registry Office. This booklet was revised to include information of the Procedures for the developmental surveillance of infants and toddlers born to mothers with laboratory evidence of possible ZIKA virus during pregnancy during their first three years of life. The booklet also includes the “Screening Certification Form” and provides contact information if families have concerns concerning developmental delay or risk for ASD.

In February 2018, the CSMN Division applied for and was awarded the Puerto Rico Act Early Ambassador Liaison to the CDC’s Learn the Signs: Act Early Initiative. This Initiative aims to improve early identification of developmental delays and autism by promoting parent engaged monitoring so children and their families can receive the services and supports they need as early as possible. The PR Ambassador established the following goals: 1-Support developmental surveillance and screening services for infants and toddlers born to mothers with laboratory evidence of possible Zika infection during pregnancy at the CSHCN Program Regional Pediatric Centers, and 2- Systematically integrate LTSAE materials in other programs that provide services to young children and their families, such as: Community Health Centers, WIC, EHS/HS, Child care centers and MCH Home visiting programs. To meet these goals CSMN Division staff distributed materials and provided workshops on early identification and the use of the Passport to Health, CDC Learn the Signs. Act Early materials including the Milestone Tracker at the PR Medical Association’ Annual Conference Pediatricians and Psychologists professional conferences, the PR Private Child Care and Development Centers’ Annual Conference; to EHS/HS Grantee Health and Nutrition Managers, the staff at the 11 Regional Offices, Family Participation and Support Advocates, and to the Service Coordinators at the 7 CSHCN Pediatric Centers.

The protocols to guide the early identification and diagnosis of children with ASD based on recommended practices and following the AAP algorithm were revised to include counseling psychology as a discipline qualified to diagnose ASD. Meetings were held with PRHIA to discuss and agree on the provisions of said protocol. The protocols were approved and signed by the Secretary of Health on April 2, 2018. The early identification guide was revised to include these protocols.

On April 26, 2018 all Service Coordinators from the 7 CSHCN Regional Pediatric Centers were trained on the administration of the M-CHAT-R/F screening tool.

To support awareness of ASD early signs and the use of the early identification and diagnostic protocols, the ASD early identification guide (Guía para la Identificación Temprana del Trastorno del Espectro del Autismo: Vigilancia, Cernimiento y Diagnóstico) which includes the protocols for early identification (Protocolos Uniformes para la Identificación Temprana del TEA: Vigilancia y Cernimiento del Desarrollo 0-66 meses) and diagnosis of ASD (Protocolos Uniformes para el Diagnóstico del Trastorno del Espectro del Autismo) were published in the Parent Information Center’s (APNI) web page, www.apnipr.org .

Since May 2018, the CSHCN Division has 27 Arbovirus Health Educators assigned to 60 WIC clinics throughout PR. They provide follow-up and support to families of infants and toddlers born to mothers with laboratory evidence of possible Zika infection during pregnancy and encourage families to participate in the CSHCN Program Regional Pediatric Centers Surveillance and Service Coordination Protocol. These educators provide support to families on the use of the Passport to Health, the “Screening Certification Form” and the implementation of the developmental and ASD monitoring with the Act Early Materials and the Milestone Tracker.

Staff from the CSMND continues to participate in the Central Council of Project LAUNCH (Linking Actions for Unmet Needs in Children’s Health) activities. Project LAUNCH serves the municipalities of Fajardo, Vieques and Culebra. One of Project LAUNCH’s initiatives is the early identification of developmental delays and that children receive developmental and ASD screening as established by PR-EDSPT and the ASD (Surveillance and Screening) Protocol.

The CSHCN Division has established a collaborative relationship with the PR Community Health Centers (Section 330). The Division shared a digital version of the Passport to Health for the PR Association of Primary Health to print and distribute among their 62 Centers throughout PR. Additionally, Division staff initiated training on the importance of providing information on developmental milestones and early identification of developmental delays to families in order to strengthen their participation in the surveillance of their children’s development. Centers’ nursing, pediatric, social work, psychology, community liaisons, service coordination, and health education staff participated. Participants received CDC’s materials in Spanish and explored how to use them and the Passport to Health to support early identification. The training also oriented on the services provided by the Division and the referral process for ASD diagnostic evaluations through the Divisions’ 7 Regional Pediatric Centers and 2 Autism Centers. The first training was held on September 11, 2018 for staff from centers of the Metro Region. Trainings for the remaining Regions were programmed for: October 23, 2018 (North Region), November 15, 2018 (West Region), and December 11, 2018 (South Region).

Autism Registry

CSHCN staff continues promoting the Autism Registry among health providers, and of the importance of registering their patients diagnosed with ASD.

The Autism Registry was implemented in April, 2016. The Registry collects the following information: demographics, age when ASD signals were observed for the first time, ASD diagnosis, date of diagnosis and severity, diagnostic tools used, and health professional that made the diagnosis, and comorbid conditions, among other information. It is continuously improved based on feedback from users.

A brochure, directed to parents, informing on the Registry has been distributed to all the Regional CSHCN Centers, the Special Education Services Centers, Early Intervention Programs, Early Head Start and Child Care Centers and the Parent Training and Information Center. The brochure is on line and can be downloaded. The Autism Registry is continuously improved based on feedback from users.

In order to increase the number of providers who diagnose ASD, staff from the CSHCN Division participated of the Asociación de Psicológos de Puerto Rico Annual Convention on January 26 and 27, 2018. A summary of the ASD Diagnostic Procedures was distributed to all participants. During the Convention Psychologists who carry out ASD diagnostic evaluations were able to open their account in the Autism Registry.

On July 7, 2018 staff from the CSHCN Division met with the Special Education Associate Secretary of the PR Department of Education (DOE) to present the ASD Diagnostic Procedures and the Autism Registry. The Associate Secretary agreed to amend the contracts of the corporations that provide ASD diagnostic services to the DOE so as to include compliance with the DH’s Diagnostic Procedures and Autism Registry. As a result of this meeting, on August 8, 2018, an orientation on the ASD Diagnostic Procedures and the Autism Registry was given to the psychologists that carry out diagnosis of ASD of the DOE’s largest corporation. The psychologists were also able to open their account in the Autism Registry.

The CSHCN staff submits a monthly report of the number of children diagnosed and on the number of diagnosis registered.

The PR Parent Information Center continues to distribute the Autism Registry brochure at the education and health community based activities in which they participate.

A collaborative agreement is underway with PRHIA to include all the participants of the Autism Special Coverage in the PRDOH Autism Registry. Additionally, ongoing orientations to parents of children diagnosed with ASD and professionals that carry out diagnostic evaluations continue to be offered during the application year at health fairs, professional conferences and DOE and PRDOH activities.

The following ASD Steering Committee priorities do not directly correspond to the State Action Plan’s October 2017 to September 2018. However they support the development of systems of services for the population with ASD.

Assessment for Planning Interventions

A Sub-Committee of the ASD Steering Committee developed a Procedures for assessment for planning interventions (Protocolo del Avalúo Interdisciplinario Dirigido a la Planificación de Intervenciones). The Procedures was approved by the ASD Steering Committee and signed by the Secretary of Health on April 2, 2018. On March 2018 the Sub-Committee also completed a guide for assessment for planning interventions for children and youth with ASD (Guía para el Avalúo Dirigido a la Planificación de Intervenciones para Niños y Adolescentes con el Trastorno del Espectro del Autismo). The Guide was distributed to 1,900 and can be downloaded from the Parent Information Center’s web site.

Professional Competencies

Trans-disciplinary and specific competencies were developed and approved by the ASD Steering Committee for the following disciplines: special education, speech and language pathology, speech and language therapy, occupational therapy, physical therapy, social work, medicine, odontology, nursing, psychology, rehabilitation counseling, nutrition/dietician and audiology. In order to establish a mechanism that assures that professionals continued education meets the established competencies for professionals and paraprofessionals who work with individuals with autism across the lifespan a request was made to the Secretary of Health to emit an Administrative Order for the following disciplines: audiology, odontology, nutrition, nursing, speech and language pathology and therapy, occupational therapy, physical therapy, medicine, and psychology. This Administrative Order should state that the examining boards for the aforementioned disciplines must require that the professionals that they certify and license meet the established professional competencies.

Competencies for first responders were developed and approved by the ASD Steering Committee. With the purpose of disseminating the competencies, meetings were held with the 911 Office and the Fire Fighters Academy.

Decrease Prevalence of Neural Tube Defects at Birth

The AAP, as well as many other health societies and associations, endorsed the recommendation that women at reproductive age consume 400 mg of folic acid daily to prevent neural tube defects (NTDs). There is scientific evidence that folic acid supplementation before conception can prevent 50% or more of NTDs such as spina bifida and anencephaly. For women who have previously had an NTD pregnancy, CDC recommends increasing the intake of folic acid to 4000 mg per day, beginning at least 1 month before conception and continuing through the first trimester. Implementation of these recommendations is essential for the primary prevention of these birth defects. The consumption of folic acid is an evidence-based practice, and the PR-BDSPS continues its promotion for the use of folic acid in women of reproductive age. The surveillance system also uses the data collected to identify populations at risk of congenital defects.

The PR-BDSPS continued its neural tube defects (NTD) prevention activities through diverse educational and promotional strategies. Materials on folic acid were disseminated at community based health fairs and educational activities. From October 2017 to September 2018, the BDSPS participated in fifteen (15) community based health fairs reaching over 1,900 individuals where 5,000 copies of educational materials were distributed. These health fairs were held all over the island: Intercontinental Hotel, Residencial Monte Hatillo, Plaza Kids and Food Festival at Plaza Las Americas, Community Health Fair at Cataño and Juan Pachin Vicens Auditorium in the Ponce Region. The remaining ten community health fairs were held in the municipalities of Adjuntas, Cataño, Caguas, Ceiba, Fajardo, Juncos, Juana Diaz, Rio Grande, and Toa Alta.

The CSMND Health Educator offered presentations and lectures regarding birth defect prevention and the recommended folic acid consumption to over 240 students of 6 university and colleges, and 13 elementary and high schools in different municipalities, reaching over 600 students. The Health Educator worked closely with three FQHCs community primary health care centers: COSSMA, Salud Integral de la Montaña and Health Pro Med. As of February 2018, the Health Educator had offered three (3) educational lectures to 33 patients waiting for their appointment.

Continued activities included the distribution of the brochures “How to Prevent Birth Defects” and “Congratulations, Mom”. The first one is continuously distributed to couples seeking a marriage license, and the second is distributed during infants’ registration at the Demographic Registry Office.

The PR-BDSPS Social Worker continued contacting families with NTD affected pregnancies to provide orientation, recurrence prevention counseling, and to offer coordination services and referral to community and parents supports groups such as: My Down Syndrome Friends (MASD), Spina Bifida Association, Association of Parents of Children with Disabilities (APNI), and Jarcho-Levin and Trisomy 18 family support group. During last fiscal year 94% (143/152) of mothers interested in receiving services relevant to their child's needs were served. Surplus funds were used to purchase educational material, such as information sheets, system forms and office materials for the BDSPS nurses. During this reporting period, 100% of the interested families were successfully referred.

The BDSPS continued working closely with PR Maternal and Fetal Medicine (MFM) specialists. A dedicated medical records abstractor actively obtained the ultrasounds and amniocentesis results where birth defects are identified. This active case-finding strategy allows for the rapid identification of any potential case of birth defects, as well as, fetal deaths and terminations.

The PR-BDSPS 2017 Annual Report was released on January 2018. Since it has relevant data, such as demographic information and prevalence maps, the report is being distributed to health professionals at all 37 birthing hospitals and other sites. During year 2018, approximately 635 Annual Reports have been distributed.

Increase data capacity and improve services through the implementation of health information technology (EHR and tele-health) at the RPCs.

In December 2017, the Government General Budget Office (OGP) rejected the request to contract the selected healthcare technology company SabiaMed to implement the EHR system. In order to complete the project, it was integrated with a similar project in the Medical Services Administration (ASEM), which is part of the Department of Health. The new company is called Meditech. A Memorandum of Understanding was agreed upon until the Meditech services contract was completed by the end of 2018. A re-assessment for needed hardware at the RPCs was carried out and the following equipment was acquired: 18 printers, 7 receipt printers, 117 UPS Battery Backup, 117 CISCO Units, 117 Computers, 4 Laptops, and 117 Smart Net Cisco. The CSMND contracted a Specialized Programmer and two Information System Technicians who are currently working with the Meditech staff. Equipment installations and technological configurations were carried out in each Pediatric Center; a total of seven configurations were completed last year. Currently, the installation and configuration of desktop computers was completed for all nine centers, including an additional 44 portable computers for the MCBH-Zika administrative staff and clinical Tele-medicine staff. This process is also authenticated by staff from the Office of Computing and Technological Advances (OIAT, Spanish acronym), of the DOH.

An equipment needs assessment was carried out for the Tele-health system. Comparisons of software, hardware, prices and demonstration of the best available equipment and services in the market, as identified at the American Tele-Medicine Association (ATA) 2017 Annual Conference, was performed. A Standard Operating Procedures (SOP) Manual was developed based on the recommendations at the ATA Annual Conference, including the processes to evaluate the Telemedicine Project, and the development of documents such as the Informed Consent, family satisfaction surveys, data quality and connectivity assessment. A job description for a Tele-Presenter was developed, interviews with potential tele-presenter candidates were carried out and a candidate was selected and recently contracted. Currently, the process of office and technological equipment acquisition to prepare the Telemedicine rooms is taking place.