The Office for Genetics and People with Special Health Care Needs (OGPSHCN) administers Title V funds specific to children and youth with special health care needs (CYSHCN)

 

In 2008, HRSA's Maternal and Child Health Bureau (MCHB), together with its partners, identified six core outcomes to promote the community-based system of services mandated for all children with special health care needs under Title V. These outcomes gave us a concrete way to measure our progress in making family-centered care a reality and in putting in place the kind of systems all children with special health care needs deserve[1]. The six core outcomes were:

• Families of children and youth with special health care needs partner in decision making at all levels and are satisfied with the services they receive;
• Children and youth with special health care needs receive coordinated ongoing comprehensive care within a medical home;
• Families of CSHCN have adequate private and/or public insurance to pay for the services they need;
• Children are screened early and continuously for special health care needs;
• Community-based services for children and youth with special health care needs are organized so families can use them easily;
• Youth with special health care needs receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence.

 

In previous years, OGPSHCN has used these six core outcomes as a framework for activities and for the 2021-2025 MCH Block Grant needs assessment reporting cycle, Maryland identified, “ensuring optimal health and quality of life for all children and youth with special health care needs and their families by providing services within an effective system of care in alignment with the six core outcomes” as a continued State Priority. However, those six core outcomes have been revised and updated over the years. Beginning with the FY2022 annual report and moving forward through FY2023 and beyond, revised and updated outcomes will be discussed.

 

In 2014 the National Consensus Framework for Improving Quality Systems of Care for Children and Youth with Special Health Care Needs project released a core set of structure and process standards for systems of care for CYSHCN adding cultural competence as a seventh outcome and introducing 10 core domains for system standards[2]. Version 2.0 of the National Standards for CYSHCN, released in 2017 as a result of a partnership between The Association of Maternal & Child Health Programs (AMCHP) and the National Academy for State Health Policy (NASHP) organizes the standards into eight core domains and introduces four Foundational Standards for Systems of Care for CYSHCN.[3] As stated in the report, “These four principles are the foundation for all standards in each domain, and should be in place to ensure a comprehensive, quality system of care for children and youth with special health care needs.”[4]

 

Foundational Standards for Systems of Care for CYSHCN:

• Children and families of CYSHCN are active, core partners in decision making in all levels of care.
• All services and supports for CYSHCN are implemented and delivered in a culturally competent, linguistically appropriate, and accessible manner to best serve CYSHCN and their families. All written materials provided to CYSHCN and their families are culturally appropriate, provided in the primary language of the CYSHCN and their family, and in a manner and format appropriate for children and their parents or caregivers who have limited English proficiency, lower levels of literacy, or sensory impairments.
• Insurance coverage for CYSHCN is accessible, affordable, comprehensive, and continuous.
• All care provided to CYSHCN, and their families is evidence-based where possible, and evidence-informed and/or based on promising practices where evidence-based approaches do not exist.

 

Core Domains for System Standards

• Identification, Screening, Assessment, and Referral
• Eligibility and Enrollment in Health Coverage
• Access to Care
• Medical Home
  • Pediatric Preventive and Primary Care
  • Medical Home Management
  • Care Coordination
  • Pediatric Specialty Care
• Community-Based Services and Supports
  • Respite Care
  • Palliative and Hospice Care
  • Home-Based Services
• Transition to Adulthood
• Health Information Technology
• Quality Assurance and Improvement

 

In 2022, the Blueprint for Change: A National Framework for a System of Services for CYSHCN was released via a special supplement to Pediatrics. The Blueprint for Change is the result of work led by the Maternal Child Health Bureau (MCHB) in partnership with families, health professionals, and other stakeholders. In the Blueprint, four critical areas are addressed: health equity, family and child well-being, access to services, and financing of services. In FY23, OGPSHCN will spend some time evaluating and assessing how the Standards of Care and the Blueprint are related and how to integrate our current work.

 

SFY2023 is an ideal time for OGPSHCN to shift to the updated standards of care for CYSHCN as a programmatic blueprint, as the last few years have exposed the need for adjustments to internal organizational structures and refreshed program strategies.

In SFY2020 and SFY2021, OGPSHCN engaged in an intensive review of the internal process for awarding grants. In SFY2022, OGPSHCN and the Bureau began the work of assessing current programs and developing forward-looking strategic plans. This will continue and expand in SFY2023

 

HRSA identifies its key strategic goal for children and youth with special health care needs as creating an effective system of care to allow for optimal health and quality of life for all CYSHCN and their families. An effective system of care ensures:

• Families are partners in care
• Screening occurs early and continuously
• Families can easily use community-based services
• Children and youth have access to an accessible family-centered, comprehensive medical home
• There is adequate insurance and funding to cover services
• Families and providers plan for transition to adult care and services.

 

The State of Maryland identifies the objective for this population as improved health through comprehensive, coordinated care for CYSHCN and support for successful transition to adult health care.

 

For the 2021-2025 Five-Year Action Plan, the Maryland Steering Committee selected Medical Home (NPM 11) and Health Care Transition (NPM 12) as the National Performance Measures (NPMs) for children and youth with special health care needs. These NPMs include children and youth with and without special health care needs crossing both CSHCN and Child Health population domains.

 

One of the many challenges in improving health systems for CYSHCN when there are so many opportunities for improvement is creating a set of goals, benchmarks and measures of success that is SMART (specific, measurable, achievable, relevant and timebound). In discussing plans for SFY2023, Maryland will primarily look at the Foundational Standards for Systems of Care within the context of the selected National Performance Measures and will secondarily look at those core domains for system standards not named as performance measures but still foundational to provide effective systems of care for CYSHCN. Thirdly, Maryland will explore ways in which to integrate the four critical areas addressed in the Blueprint for Change to ensure access to a well-functioning system of services for CYSHCN.

 

MEDICAL HOME

 

Medical Home

According to the 2018-2019 National Survey of Children’s Health, 44.9% of children ages 0 to 17 with special health care needs had a medical home, compared to 46.4% of children ages 0 to 17 without special health care needs.

 

NPM 11: Medical Home

The strategy selected for this NPM is to encourage implementation of the Medical Home model in pediatric primary care practices through education and training opportunities. OGPSHCN will explore the possibility of providing a continuing education course on Medical Home Implementation for MDs, PAs, NPs, nurses, and other medical providers, with a focus on engaging providers-in-training and early career providers.

 

In addition, discussions will be sought around expansion, replication, and sustainability of medical home-focused initiatives currently underway by current OGPSHCN grantees who were awarded under the 2020 competitive request for applications. Specific topics for these discussions include patient/family-centered care, sustainable care coordination and/or case management and shared plans of care between primary care providers and specialists.

 

Looking at the Foundational Standards for Systems of Care, in the context of the medical home model:

 

Children and families of CYSHCN are active, core partners in decision making in all levels of care (shortened to Family-Professional Partnership)

 

A great deal of effort in the past has focused on educating families about the Medical Home system of care, however, the reality is that families are more of a recipient of the medical home framework once it has been implemented and have very little control of how, when or even if, a given provider can and will adopt this framework. Awareness of the existence of the concept is important, but awareness alone will not increase its implementation within the provider community. OGPSHCN will endeavor to engage providers-in-training and early career providers to inform and educate about the medical home, and also to provide some practical tips on how to implement a medical home in their practice.

 

This does not preclude educating family members. Rather, the shift is in educating family members on factors they can control: recognizing good medical care; engaging in clear and respectful communication, and effective advocacy for their CYSHCN.

 

In FY20/21, OGPSHCN drafted and posted the newly revised competitive RFA previously discussed with the explicit requirement that all proposed projects ensure family members have a meaningful role in grant-funded activities. This requirement continues in FY23 and beyond. As current grantees enter their third and final year of funded project activities, OGPSHCN begins drafting the scope of work for grant projects beginning in FY24. Again, Family-Professional partnership will take center stage. 

 

OGPSHCN's dedicated Parent Resource Coordinator departed in late 2019, which posed a challenge for delivering parent perspective training and providing FPP resources. However, OGPSHCN saw an opportunity to integrate Family Professional Partnership into all facets of the work. All too often, a single family member is identified and the box for family engagement is checked. OGPSHCN wants to see the family voice fully incorporated into all facets of program development, implementation and administration. Without the conscious, valued, and sustained involvement of family, none of the other goals will ever be fully and meaningfully accomplished. Collaboration with those with lived experience is essential to determining what is needed, why needs are not currently being met, and what can be done to address those needs. Family Professional Partnership is not a separate outcome but is the very foundation upon which all other desired outcomes can be achieved.

 

OGPSHCN will continue to seek opportunities to provide family sensitivity trainings to internal and external partners who serve CYSHCN, as well as trainings for families on resource identification and advocacy, and will also identify additional opportunities and strategies to integrate the family voice.

 

All services and supports for CYSHCN are implemented and delivered in a culturally competent, linguistically appropriate, and accessible manner to best serve CYSHCN and their families. All written materials provided to CYSHCN and their families are culturally appropriate, provided in the primary language of the CYSHCN and their family, and in a manner and format appropriate for children and their parents or caregivers who have limited English proficiency, lower levels of literacy, or sensory impairments. (Shortened to Cultural Competency)

 

Maryland Title V humbly changes this foundational standard to read: All services and supports for CYSHCN are implemented and delivered in a culturally respectful, linguistically appropriate, and accessible manner to best serve CYSHCN and their families. Through an equity lens, we acknowledge that “cultural competence” is an improbable accomplishment. The word “competence” itself implies proficiency; an end to learning. But can one be competent in a culture one is not a part of? The standard we aspire to and will endeavor to demonstrate is one on cultural humility. This implies respect for others’ culture as well as a mindset of continuous learning.

 

The clinical setting naturally comes with a power imbalance, but through a shared decision-making model, the strengths each party brings to the table are recognized and respected. In FY23, OGPSHCN will develop informational materials and learning opportunities on shared decision making in the context of the medical home (shared decision making between provider and patient/family) and in the context of health care transition, discussed further below.

 

One of the frameworks around which Title V is structured in the Health Equity Framework. The health equity framework looks at class, race/ethnicity, gender, sexual orientation, and immigration status and recognizes how institutional and structural inequities can create unequal living conditions. The unequal living conditions can then shape the health behaviors and health outcomes. Thinking about this framework in the context of CYSHCN, intersectionality - how race, class, gender and other characteristics intersect with one another to overlap and create different forms of discrimination - adds another layer of complexity for families of CYSHCN and for YSHCN navigating the journey to adulthood. Through existing and planned outreach and education efforts to providers and families, OGPSHCN has the opportunity to inform about factors contributing to, or impeding, health equity as well. In FY23, OGPSHCN will explore how to integrate discussion and learning opportunities on health equity into existing learning opportunities.

 

OGPSHCN boasts fact sheets and resource information on multiple individual diagnoses as well as the medical home model in general. In FY23 and beyond, OGPSHCN will implement a schedule to review and edit all public-facing and internal fact sheets and presentation materials, including website materials.

 

In addition to considerations of accessibility related to limited English proficiency, lower levels of literacy, or sensory impairments, OGPSHCN recognizes the need to modernize communication approaches. Some programs are still using communication methodologies established 20+ years ago; it is time to consider not only ‘modern’ communication methods, but post-COVID communication methods and needs. In FY23, OGPSHCN will explore the utilization of increased electronic communication and record-keeping.

 

Insurance coverage for CYSHCN is accessible, affordable, comprehensive, and continuous. (Shortened to Insurance Coverage)

 

Federal and State legislation dictates much about insurance coverage, however, there are some areas OGPSHCN can impact through outreach and education. In FY23, OGPSHCN will endeavor to ensure CYSHCN have access to continuous health coverage, all benefits they are eligible to receive, and relevant care where they learn and live. Through enrollment in the Children’s Medical Services Program, uninsured/underinsured CYSHCN have specialty care paid for and, in some cases, private insurance purchased on their behalf. This will continue in FY23.

 

Additionally, through restoring previous relationships and forging new partnerships among community-based organizations, healthcare providers, sister State programs and local health departments, OGPSHCN can increase awareness of resources across the board, which will increase access to benefits and care for CYSHCN and their families. Specific to those families, insurance and other benefits navigation is complex and often difficult to understand. Through outreach and education to families, this confusion can be alleviated within the confines of providing general information applicable to all programs.

 

All care provided to CYSHCN, and their families is evidence-based where possible, and evidence-informed and/or based on promising practices where evidence-based approaches do not exist. (Shortened to evidence-based care)

 

Evidence-based care or Evidence Based Health Care can be defined as, “the integration of the best research evidence, clinical expertise and the patient’s unique values and circumstances.[5] This approach to health care embraces the concepts of family professional partnership wherein a clinician “uses the best evidence available, in consultation with the patient (evidence-based patient choice), to decide upon which option best suits the patient.” OGPSHCN will continue to educate on best practices for family-professional partnership.

 

Sub-categories within the Medical Home Core Domain for System Standards include:

• Pediatric Preventive and Primary Care
• Medical Home Management
• Care Coordination
• Pediatric Specialty Care

 

Care Coordination has long been a focus of OGPSHCN’s efforts, however in recent years this focus has wavered. Defining care coordination (as opposed to case management), determining the current landscape of care coordination, and developing feasible, sustainable plans for care coordination in consideration of the many carried needs of CYSHCN, and their families seems an almost insurmountable challenge. Two of OGPSHCN current grantees are doing some exciting and innovative work around the medical home and care coordination which can potentially be expanded. OGPSHCN will endeavor to further develop and refine the role of care coordination and case management within the context of future grant requests for applications, with a focus on outcome measures, quality improvement, and sustainability of local care coordination services. 

 

In 2022, the National Academy of State Health Policy released National Care Coordination Standards for CYSHCN Implementation Guide to outline the core system-level components of high-quality care coordination for this population. OGPSHCN will use these standards as a guide to further inform care coordination activities in FY23.

 

Collaboration among multiple partners is key in providing care to CYSHCN and pediatric specialty care is no exception. It is imperative that pediatric primary care and specialty

providers are able to communicate and collaborate without leaving the CYSHCN and their family feeling like they are playing a game of “telephone.” A relatively easy mode of collaboration that can be as high-tech or low-tech as needed is to establish a shared plan of care.[6] In FY23, OGPSHCN will increase provider and family use of shared plans of care.

 

HEALTH CARE TRANSITION

Health Care Transition. In 2017, 15.3% of children in Maryland received services necessary to transition to adult health care, compared with 14.2% nationally. 21.6% of children and youth with special health care needs received services necessary for transition to adult health care, compared to the national average of 18.9%.

 

NPM 12: Transition

The strategy selected for this NPM is to increase and enhance parent/family education and training around HCT. Internally, OGPSHCN will explore strategies to engage families in the transition process for their youth with special health care needs. Provider knowledge and willingness to treat is essential for successful transition, but only with the concentrated efforts of engaged families and youth will we truly see an increase in the measures. Similar to plans under Medical Home, discussions will be sought around expansion, replication, and sustainability of health care transition-focused initiatives

underway by current OGPSHCN grantees who were awarded under the 2020 competitive request for applications. Specific topics for these discussions include increasing adult provider willingness and capacity to provide quality care for youth with special health care needs, increasing family awareness of transition benchmarks, and increasing health care and school-based professional awareness of transition benchmarks.

 

Looking at the Foundational Standards for Systems of Care, the context of Health Care Transition:

 

Family-Professional Partnership

Without the engagement of an involved adult, successful health care transition (HCT) for our YSHCN is unlikely to happen. While there are systems and structures in place to support HCT through certain provider offices, and to support transition to adulthood in general through school, those systems are overwhelmed and inefficient. A goal for FY23 is to revitalize parent/family training around HCT. While the focus of efforts around the Medical Home may rest within the provider community, the focus of activities around HCT awareness would ideally rest with the family. There are numerous challenges to successful health care transition — including a dearth of adult providers willing to see youth and adults with special health care needs — but families not knowing how, when, and why to focus on transition efforts is also a significant challenge and one that might be tackled more effectively within OGPSHCN's scope of influence.

 

In years past, the HCT Program within OGPSHCN convened a Health Care Transition Leadership Team, produced fact sheets, and engaged in meaningful partnerships with stakeholders. While some of those efforts continued in more recent years, staffing issues and other internal challenges have led to a decline in HCT-focused activities. In FY23, OGPSHCN will explore how efforts around HCT can take the forefront again, beginning with efforts to solicit input from families, youth and adult self-advocates. The Center for Chronic Disease Prevention and Control within the Maryland Department of Health coordinates the Disability Health Inclusion Advisory Council, on which OGPSHCN holds a seat. In FY22, that Advisory Council established a transition of care workgroup to impact successful health care transition for disabled youth. The advisory council includes family-led organizations and self-advocates. Additionally, The Association of Maternal and Child Health Programs (AMCHP) partnered with Title V Block Grants and Got Transition® to develop AMCHP’s Implementation Toolkit for National Performance Measure 12. The toolkit provides various relevant resources and tools Title V programs and public health professionals can use to address NPM 12 and encourage successful youth transitions to adult health care. The toolkit explores five strategic approaches, which include: 1) youth and family education and leadership development, 2) health care professional workforce development, 3) care coordination, 4) communications and 5) social media, and 5) measurement and assessment. In FY23, OGPSHCN will review this tool to aid in the design and implementation of training programs.

 

Educating families is only part of the equation; we must also educate and empower youth to take charge of their own health outcomes. Many years ago, OGPSHCN designed and offered a Health Care Notebook for caregivers and for youth. In FY23, OGPSHCN will explore electronic medical record keeping systems specifically for youth/young adults, particularly in consideration of varying intellectual capacity.

 

Cultural Competency (i.e. Cultural Humility)

 

Efforts to demonstrate the standard of cultural humility extends to health care transition. The shared decision model is applicable not only to the medical home (shared decision making between provider and patient/family) but to HCT as well. Supported decision making has long been considered an alternative to guardianship for adults with disabilities. In FY23, OGPSHCN will explore how information from The National Resource Center for Supported Decision Making[7] and other organizations, as well as feedback from self-advocates, can be incorporated into HCT materials. As previously noted, OGPSHCN boasts fact sheets and resource information on health care transition. Along with plans to review medical home fact sheets, OGPSHCN will implement a schedule to review and edit all public-facing and internal fact sheets focused on HCT.

 

Insurance Coverage

 

The Children’s Medical Services (CMS) Program pays for specialty care for children and youth who are uninsured or underinsured up to age 22. The eligibility age cutoff can be extended to age 25 in certain circumstances. There are very few safety nets for these young adults after enrollment in the CMS Program terminates. In FY22, the Program began sending a letter to families prior to enrollment termination with health care resources for their adult child. In FY23, additional resources will be added to the information being sent to families. OGPSHCN will also explore opportunities to educate this cohort of families and youth with whom we already have a strong connection on insurance and other benefits navigation.

 

Evidence-Based Care

 

Throughout FY23, OGPSHCN plans to conduct more statewide presentations on best practices related to health care transition. The focus will be on early-career providers to increase the capacity and willingness of adult providers to see youth and young adults with special health care needs.

 

In FY23, OGPSHCN will also explore a collaboration with the Adolescent Health Program within the Maryland Maternal and Child Health Bureau to review resources related to sex education for CYSHCN. Special health care needs and disabilities can have significant impact on sexual health and increase the risk of victimization. Researching evidence-based best practices concerning sex education for CYSHCN will be the first stage of educating and informing providers, parents and youth.

 

 

ADDITIONAL CORE DOMAINS FOR SYSTEM STANDARDS

 

• Identification, Screening, Assessment, and Referral
• Eligibility and Enrollment in Health Coverage
• Access to Care
• Community-Based Services and Supports
  • Respite Care
  • Palliative and Hospice Care
  • Home-Based Services
• Health Information Technology
• Quality Assurance and Improvement

 

Identification, Screening, Assessment, and Referral

OGPSHCN houses several Programs related to identification, screening, assessment and referral, including: Newborn Screening (NBS) Follow up; Critical Congenital Heart Disease (CCHD) Screening; Birth Defects Reporting and Information System (BDRIS); Sickle Cell Long-Term Follow-Up; and Early Hearing Detection and Intervention (EHDI). The aforementioned Standards for Systems of Care for Children and Youth with Special Health Care Needs Version 2.0[8] lists numerous factors needed for success in this standard. OGPSHCN will review these factors in FY23 to determine where Program improvements can be made and/or where outreach to providers or other stakeholders would be warranted.

 

In the area of Newborn Screening Follow-Up, OGPSHCN has begun development on an educational webinar providing technical assistance on specimen collection to reduce the number of unsatisfactory specimens. 

 

One area needing significant attention in FY23 and beyond is refusal and loss to follow up for certain screening programs. One can surmise several factors contributing to increased refusal for certain screenings and assessments over the past several years. In FY23, OGPSHCN will assess the current status of refusals and loss to follow up in current programs and develop plans to determine causes and enact strategies to reduce those numbers.

 

Eligibility and Enrollment in Health Coverage

Thinking about factors involved in eligibility and enrollment in health coverage that are within OGPSHCN’s sphere of influence, in FY23, outreach and education to families will focus on insurance and other benefits navigation. Additionally, OGPSHCN will explore increased partnership and collaboration with Maryland Medicaid to inform and ensure best practices for CYSHCN enrolled in Medicaid Managed Care Organizations. With the renewed Community of Care Consortium, discussed elsewhere, OGPHSCN will provide a forum for health coverage providers and other stakeholders of the CYSHCN community to interact.

 

Access to Care

Access to care involves CYSHCN having geographic and timely access to primary and specialty services.

 

Through the CMS Program, access to specialty care on an individual level is directly supported for enrolled CYSHCN. On a more-systemic level, The Maryland Community of Care Consortium for CYSHCN (COC) served as a forum for learning, networking, and communication among various stakeholder groups for years. The COC was coordinated by The Parents’ Place of Maryland (PPMD) through grant funding through FY20. COC work was not included in the FY21 competitive RFA and discussions between OGPSHCN, Bureau and Administrative leadership are ongoing to plan and implement continuation of the COC. This has been a challenge over the last year; one OGPSHCN hopes to address in FY23. The COC was a valuable statewide collaborative effort that enhanced access to care by sharing information and resources among multiple stakeholders. In rebuilding the COC, OGPSHCN will look at the previous structure, but also consider current needs and technology in a post-COVID world. The Florida Family Leaders Network brings together family leaders from across the state who work or volunteer at local regional or state level - with healthcare systems, agencies and government offices, community based or family run organizations. Organizations and systems like this will be assessed to determine how we can integrate their successes into Maryland Title V for CYSHCN.

 

Additional opportunities for information sharing and collaboration will be afforded to OGPSHCN grantees with the long-awaited implementation of grantee meetings in FY23. This has also been a challenge over the last year.

 

The aforementioned efforts to ensure a shared plan of care for CYSHCN will additionally enhance the capacity of system stakeholders to provide care no matter where the CYSHCN present themselves.

 

Finally, a significant “silver lining” of the COVID-19 pandemic has been the increase in telemedicine/telehealth. Providers rapidly shifted to what had previously, for years, been an emerging practice. The shift was so rapid that an assessment of the current state of telemedicine in Maryland would be beneficial. Upon the outcome of that assessment, OGPSHCN can determine what additional educational and advocacy efforts are needed.

 

Community-Based Services and Supports

Strategies to impact access to care will have the added benefit of impacting community-based services and supports. However, to truly provide comprehensive home and community-based supports, OGPSHCN will additionally pursue collaborative opportunities with health systems, and community agencies including family organizations, education, Early Intervention (Part C), Special Education, child welfare, mental health, and home health care organizations. Through the aforementioned Community of Care Consortium, stakeholders such as these will have the opportunity to interact with and learn from each other.

 

Sub-categories within the Community-Based Services and Supports Core Domain for System Standards include: Respite Care, Palliative and Hospice Care and Home-Based Services. While OGPSHCN has encouraged grantees to focus on some of these categories - respite care, specifically - those efforts have declined in recent years. In FY23, OGPHSCN will review components of success for each of these standards and determine the best next steps.

 

Health Information Technology

Several years ago, OGPSHCN developed a Health Care Notebook and a Maryland Youth to Young Adult Care Notebook. These care notebooks were designed for parents and caregivers of a child with special health care needs and provided a helpful central tool to store all of a child’s health care information. The care notebooks allowed parents and caregivers to provide any health information about their child, including reports from recent doctor’s visits, recent summaries of hospital stays, current school plans, test results and informational pamphlets to new providers. Additionally, parents and caregivers could provide pertinent information about their child that they felt a paid caregiver might need. At the time of development, they were invaluable record-keeping, organization and information-sharing tools. In 2022, however, the idea of carrying around a binder full of papers is outdated and, in the case of youth, unrealistic. In FY23, OGPSHCN will review the care notebooks to update for current needs and technology options, including ensuring that youth with special health care needs play a role in creating their own care notebook.

 

Quality Assurance and Improvement

Effective quality assurance and improvement requires data.

OGPSHCN recently inherited the management of an existing agreement between Maryland’s Office of Quality Initiatives and the University of Maryland, College Park Epidemiology Doctoral Internship Program. In FY22, doctoral interns focused on sickle cell data, assessing hospital utilization, and morbidity and mortality among young adults with sickle cell disease and sickle cell trait. Analysis of Maryland data will allow for comparison with national data and permit identification of priority needs for young adults with these conditions. In addition, sickle cell analyses will serve as a template for analyses of all CYSHCN and for specific conditions. In FY23, this relationship will continue. In addition to the opportunities afforded by that agreement, OGPSHCN will invest time and efforts into data capacity, creating opportunities for data sharing and data linkages among partners and stakeholders. With increased data, OGPSHCN can develop additional measurable objectives.

 

Overarching internal goals for FY23 and Beyond

Many plans for FY23 and beyond for OGPSHCN are overarching goals pertaining to program assessment, refresh and redesign. Through necessity (staffing changes, network security incident) and desire, FY22 has brought numerous opportunities to evaluate the structure of OGPSHCN, its programs, and the processes by which those programs are run. Frankly, Title V CYSHCN programs have stagnated in the last few years. In many respects FY23 will be a year of assessment and planning across all programs, with the evaluation and possible reconfiguration that began in FY22 continuing to focus on innovative and modern program design and implementation.

Beginning with a comprehensive review of current literature and best practices, and culminating in a determination of priorities, strategies and measures of success, FY23 should be a year of significant change for OGPSHCN.

 

Structural changes

In FY23, components of the OGPSHCN organizational structure will shift. Some due to staffing challenges and some due to a very intentional review of staff capacity and ideal structure. OGPSHCN plans to hire and onboard a new CYSHCN Title V manager, a new Medical Director and a new epidemiologist, as well as a new EHDI program manager within FY23.

 

Measures of Success

Goals regarding measures of success are two-fold; one specific to internal programs and processes, and the other specific to OGPSHCN Title V-funded grantees.

 

Development of measures for NPM 11 and NPM 12

In FY23, OGPSHCN will assess data needs and availability related to medical home and health care transition specifically. Through the aforementioned contract with University of Maryland, a review of data available through Maryland’s Health Services Cost Review Commission[9] regarding health care transition for CYSHCN has already begun. A detailed data request to Maryland Medicaid will also be submitted after consideration of what data fields would be most beneficial. Through this data, OGPSHCN will be better able to determine accurate baseline numbers for Maryland CYSHCN, thereby more accurately identifying needs and assessing the value of planned strategies and interventions.

 

Program Assessment and Evaluation

As a result of aforementioned opportunities to evaluate OGPSHCN programs and the processes by which those programs are run, certain programs have been asked to implement new or increased tracking systems in FY22. This review and expansion of tracking mechanisms will continue in FY23. In order to determine if OGPSHCN programs are reaching targeted populations, data must be collected on stakeholder outreach and contacts. Additionally, evaluation tools will be developed and implemented for education and training opportunities to determine value and effectiveness.

 

Grant Management 

Services provided by grantee organizations vary by design. OGPSHCN endeavors to keep scopes of work in requests for applications as broad as possible to allow community-based organizations and local health departments to design projects that will reflect the needs of the communities they serve. Each applicant is asked to submit their plans to evaluate program efforts within their initial application and to update theri evaluation plan in any non-competitive applications. This allows grantees to design their own program, however, it also allows them to tell the State how they will measure success. In future requests for applications, OGPSHCN will endeavor to include a more explicit statement of work and evaluation measures. The State Title V office should and will tell grantees how success will be measured and have them provide the needed information.

 

In FY23 OGPSHCN will continue to monitor and review reporting requirements from all grantees to ensure fidelity to Department goals and grant agreement scopes of work, while also planning for future iterations of the request for applications to be posted and the work that needs to be done across the state.

 

Collaboration

An important goal in FY23 will be to establish or maintain connections to other State offices, community-based organizations, local health departments, provider organizations, and more.

 

The Community of Care Consortium (COC) will afford OGPSHCN an opportunity to liaise with multiple stakeholders across many categories. The first step in re-introducing the COC will be to conduct an internal assessment of partners and stakeholders to be invited. The first task of the newly re-formed COC will likely be to conduct a more thorough partnership assessment of sorts to determine additional stakeholders who should be invited to participate.

 

An additional requirement for FY21 grantees and continued with the FY22 grants was the establishment of routine grantee meetings to discuss topics identified as priorities by OGPSHCN. Much of the planning for these meetings took place internally during FY21, with the intent to implement fully in FY22, however, planning and implementation was stalled due to internal challenges. In FY23, grantee meetings will begin. Genetic Center grantees funded to provide support to the newborn screening follow up program will have their own meetings to discuss challenges and opportunities specific to their work, while other grantees will meet to discuss topics such as: social return on investment;

addressing health and wellness equity; performance measures and outcome measures; and grant work intersections with OGPSHCN’s programs and opportunities for complementary activities.

 

OGPSHCN also hopes to host a more structured “all-grantee” meeting that will require the attendance of each grant’s Project Director, along with one CYSHCN or family member who is a contributor to the grantee’s project. Maternal and Child Health Bureau and Prevention and Health Promotion Administration leadership will also be invited to these ‘all-grantee’ meetings.

 

Collaboration with other state offices and agencies serving the same population is already happening on some level through sponsoring or serving on certain advisory councils and committees (e.g. Disability Health Inclusion Advisory Council and Transition of Care Workgroup), but it will be important in FY23 to map missing partners and establish connections. For example, the Maryland Health Care Commission (MHCC) is an independent regulatory agency whose mission is “to plan for health system needs, promote informed decision-making, increase accountability and improve access in a rapidly changing health care environmental by providing timely and accurate information on availability, cost and quality of services to policy makers, purchasers, providers and the public.” The MHCC oversees the Patient Centered Medical Home (PCMH) workgroup. OGPSHCN will endeavor to connect with MHCC in FY23.

 

In FY23, OGPSHCN will also continue to have leadership representation on the Maryland Community of Practice for Supporting Families and Charting the Lifecourse Framework (MD-CoP), which is coordinated by the Maryland Department of Health’s Developmental Disabilities Administration. The goal of the MD-CoP is to “build capacity across and within the state to create policies, regulations, systems and practices to enhance the lives of people with intellectual and developmental disabilities and their families enabling all people to live, love, work, play, learn and pursue their aspirations in their community.” This collaborative effort will help to improve policies, programs and practices around HCT, workforce development and more. There are additional opportunities for partnership with the Developmental Disabilities Administration that will also be explored in FY23 and beyond. 

 

Opportunities to collaborate with organizations at the national level will also be explored. OGPSHCN had reached out to The Catalyst Center to discuss technical assistance options for the Children’s Medical Services Program previously. This will be an item for follow up in FY23.

 

Family-Professional Partnership

Family-Professional Partnership is perhaps the highest priority for OGPSHCN. OGPSHCN wants to see the family voice fully incorporated into all facets of program development, implementation and administration. Without the conscious, valued, and sustained involvement of family, none of the other goals will ever be fully and meaningfully accomplished. Collaboration with those with lived experience is essential to determining what is needed, why needs are not currently being met, and what can be done to address those needs. Family Professional Partnership is not a separate outcome but is the very foundation upon which all other desired outcomes can be achieved.

 

As the lead agency on Family-Professional Partnership (FPP), OGPSHCN will assess how to increase FPP within State systems, as well as providing training and support to external stakeholders. In FY23, a review of evaluation tools will be conducted with plans to evaluate the current status of internal FPP, determine areas of relative weakness and develop strategies to increase FPP. Depending upon the results of the evaluation and staff bandwidth, OGPSHCN hopes to introduce Leading by Convening[10] to staff, including Maternal and Child Health Bureau Staff. This “blueprint for authentic engagement”[11] provides a framework to engage stakeholders. The companion, Serving on Groups[12] can also be shared with family members wishing to serve on a decision-making group, whether within OGPSHCN or not.

 

In addition to Leading by Convening as a professional development opportunity, OGPSHCN staff will continue to engage in other opportunities for learning and enhancing family-professional partnership.

 

Since her onboarding, the OGPSHCN Deputy Director has served as the Title V Family Delegate; In FY23, OGPSHCN will identify a new family delegate outside of the Title V agency. OGPSHCN leadership will additionally seek out pathways for targeted recruitment of specific groups (e.g., a parent/caregiver of a CYSHCN or a former CYSHCN) within the framework of approved state hiring practices. This will provide a foundation for future recruitment efforts which have proven challenging in the past.

 

A word about COVID-19

COVID-19 has had a profound impact on the entire world. Children and youth with special health care needs represent a population that may be at increased risk for complications with COVID-19. Children with chronic conditions, disabilities and those with medically complex conditions are especially vulnerable.

 

The Developmental Disabilities Administration (DDA), a sister State administration, has gathered informational materials and developed guidance for community-based services in response to COVID-19. The DDA is working with the Maryland Department of Health (MDH) Administrations and the Maryland Department of Disabilities (MDOD), as well as Maryland and National Advocacy Organizations to inform and support people in services, family members, direct support professionals and providers. OGPSHCN supports the efforts of the DDA and will seek opportunities to collaborate and disseminate information in FY23.

 

There have been some unforeseen benefits from COVID-19, including increased availability of telehealth/telemedicine. Telemedicine has been a component to successful access to care for CYSHCN for years. In FY23, OPGSHCN will assess the current state of telemedicine in Maryland and determine what additional educational and advocacy efforts are needed.

 

Emergency Preparedness

As we've seen during the pandemic, people with disabilities are often left out of disaster preparedness and response, compounding the risk to CYSHCN and their families.

 

The Partnership for Inclusive Disaster Strategies is a “disability-led organization with a focused mission of equity for people with disabilities and people with access and functional needs throughout all planning, programs, services and procedures before, during and after disasters and emergencies.”[13] In FY23, OGPSHCN will assess the current state of emergency preparedness for CYSHCN and their families in Maryland and determine the best next steps. 

 

Looking forward

Finally, while the current grantees resulting from the FY21 competitive RFA should remain in effect until June 30, 2023, now is the time to assess the needs of the communities we serve and discuss desired edits to applicant scopes of work beyond FY23. The recent Maternal and Child Health strategic plan and the recent Needs Assessment will aid in this effort, as carefully review of reporting requirements from all grantees. The last year or two were a bit of a turning point for OGPSHCN grants administration. This has been a difficult transition on many levels, but the fervent hope is that with more focused attention to a truly competitive process and a strenuous application review process, we will see innovative and sustainable programs that can change the landscape for CYSHCN in Maryland for the better.

 

If there were one phrase to describe OGPSHCN efforts in the past years and continuing into FY23, it would be “increasing capacity.” Ultimately, the goal is to increase the capacity of staff to effectively and efficiently serve the people of Maryland - particularly CYSHCN and their families, to increase the capacity of providers to provide care for CYSHCN within a medical home, and to increase the capacity of families to support their CYSHCN now and in the future while allowing for as much independence as possible.

[1] Core Outcomes: Key Measures of Performance

[2] Standards for Systems of Care for Children and Youth with Special Health Care Needs

[3] National Standards for Systems of Care for Children and Youth with Special Health Care Needs, Version 2.0 Informational website

[4] National Standards for Systems of Care for Children and Youth with Special Health Care Needs, Version 2.0 report

[5] Bhargava, K., & Bhargava, D. (2007). Evidence Based Health Care: A scientific approach to health care. Sultan Qaboos University medical journal, 7(2), 105–107.

[6] National Resource Center for Patient/Family Centered Medical Home

[7] The National Resource Center for Supported Decision Making

 

[8] Standards for Systems of Care for Children and Youth with Special Health Care Needs Version 2.0

[9] Health Services Cost Review Commission

[10] Leading by Convening

[11] Cashman, C., Linehan, P., Purcell, L., Rosser, M., Schultz, S., and Skalski,S. (2013). Leading by Convening: A Blueprint for Authentic Engagement. Alexandria, VA: National Association of State Directors of Special Education.

[12] Serving on Groups

[13] The Partnership for Inclusive Disaster Strategies