National Performance Measure  #12:

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

 

ESM:  The percent of young adults with special health care needs, ages 18-21, who identify an adult health care provider at discharge from the Title V program.

 

Objectives:

 

• By May 15, 2023, increase the number of pediatric health care practices that adopt transition policies from a baseline 31 providers (out of 44 respondents to the survey) identified in May 2022.
• By June 30, 2023, 70% of CSHCN enrolled in Title V programs, ages 14–20 and/or their family caregiver, who identified a transition goal in the previous year, will meet at least one of the previous year’s goals.

 

Strategies:

 

• Communications and Social Media
• Health Care Professional Workforce Development
• Measurement and Assessment Data Improvements
• Other Workforce Development including Title V staff, family support, MCOs, youth, families, etc.
• Transition Readiness Assessment Questionnaire

 

Data Analysis

Effective transitions from pediatric to adult health care promotes continuity of developmental and age-appropriate health care for youth with special health care needs (YSHCN). However, several years of national, state and community studies continue to indicate that most YSHCN and families may not receive the support they need in the transition from pediatric to adult health care. The 2019-2020 National Survey of Children’s Health (NSCH) identified that 23.8% of NH’s children with special health care needs received services necessary for transition.  Although this is down from 27.8% in the 2017-2018 NSCH, it still slightly exceeds the nationwide rate of 22.5% for YSCHN.[1]

 

BFCS has been and will continue to use the SMS and PIH databases to collect data, and monitor program efforts regarding health care transition. Currently, the system allows all coordinators to record transition encounters as “TRAQ sent” and/or “TRAQ completed.” It also allows goals to be entered and tracked for reporting. Although a system update is not an option given lack of DoIT support for the application, a relatively new DoIT Business Analyst will continue to work with BFCS’ Data Analyst, to make modifications to data reports that will enable staff to improve reporting on transition-related data in FY2023. Users and program managers have identified the need to standardize data entry. A user’s guide and corresponding training will be developed and ready for implementation by all contract and state staff effective July 1, 2023.

 

While several concerns have been raised about the integrity of the existing data and reporting functionality, funding will need to be identified in order to obtain a new data system. In FY 2023, DLTSS leadership will explore options for adapting existing systems, such as New Heights, the enterprise case management system for NH DHHS, to replace the SMS/PIH database.

 

Title V Specific Activities

The Bureau for Family Centered Services (BFCS) will work to increase knowledge and the application of evidence-based and informed health care transition approaches to youth health care transition. In its second year, the Youth Health Care Transition Services Project (YHCTS) contract, NHFV will aim to ensure effective transition from pediatric to adult health care for the continuity of developmental and age-appropriate health care for CYSHCN ages 14‑21, their families, caregivers, family support and health care coordinators, and health care providers and/or practices. Activities in this contract will continue to focus on providing support for transition to adulthood, within pediatric and adult health care settings, and across the system of care for CYSHCN. The action plan identifies the following activities that will be used to achieve the project’s purpose:

 

• Maximize access to care coordination either via practice-based resource or in collaboration with external coordinators.

• Conduct staff training based on staff self-assessments and regarding patient and family-centeredness, cultural competence, and implicit bias as part of ongoing staff development.

• Support quality assurance and monitoring efforts that advance transition activities.
• Enhance access to care relative to Medicaid Managed Care contracts.
• Facilitate incorporation of the evidence informed six core elements of transition into health care practices, in accordance with Got Transition™ recommendations – through practice-based technical assistance.
• Participate on the team that reviews data base improvements and data upgrades.

 

BFCS will continue active participation in the state’s Transition Community of Practice (CoP) in which NHFV serves as the YHCTS contractor and a BFCS Nurse Consultant (NC) represents healthcare transition for CYSHCN. This commitment assures that the health perspective is infused into all transition planning for youth with disabilities moving into the adult service system. Through participation, at state and local levels, the NC, who has a special interest and dedication to this topic, will continue to expand her ability to assist youth and their families’ transition from youth to adult health care services and independence. She will continue to attend and facilitate the NH CoP state meetings as requested and participate in the Summit Planning Committee. She will represent BFCS, YSHCN and their families at the annual Transition Summit, a statewide opportunity for training, collaboration, and networking focused on post-secondary outcomes for students. The NC will participate in regional transition fairs when time allows and serve as an internal resource for DHHS staff, contractors and families, providing shared information and training opportunities.

 

Care Coordination and Family Support

BFCS will continue to incorporate evidence-informed health care transition processes for YSHCN into care coordination and family support services offered primarily through community-based contracts. Two full time DHHS health care coordinators will continue to provide these services through FY2023, after which they will move into new roles and all Title V care coordination will be provided through contracts with community-based agencies. In addition to utilizing the frameworks recommended by Got Transition®, BFCS will use the National Care Coordination Standards for CYSHCN to guide the redesign of the service delivery system for FY2024 that includes health care transition services. Guidance will also include the recommendations provided by NHFV’s “Review of the National Standards for Care Coordination for CYSHCN: A quality improvement initiative for BFCS Health Care Coordinators” staff led BFCS health care coordinators (HCC). This report was generated following a detailed training and review of the National Care Coordination Standards for CYSHCN, and self-rating of their work in comparison to the Standards (June 2021), which included a domain on transition of care.

 

In the coming year, there will be an emphasis on educating BFCS staff to improve their ability to evaluate the Transition Readiness Assessment Questionnaire (TRAQ) surveys completed by youth and families, in order to identify needed resources and education. In partnership with BFCS, NHFV, the YHCTS contractor, will provide training to all coordinators and nurse consultants to support the distribution, data collection, and the expectations for consultation related to the TRAQ and health care transition.

 

BFCS will rely on these activities and efforts to inform the development of program guidance for coordinators to assure contract compliance and successful interactions with YSHCN and their families. Current contracts require that all YSHCN enrolled in Title V programs, ages 14‑20 years and/or their family caregiver, receive an annual TRAQ survey, consultation with a coordinator to identify a goal, and review progress toward meeting the previous year’s goal. The TRAQ helps serve as a guide and directs communication and conversation to the sometimes uncomfortable or awkward discussions and the creation of a workable and individualized transition care plan. Training will be provided in conjunction with this guidance, using a variety of methods including presentations at monthly coordinator meetings, in-person and virtual topical trainings and webinars, conferences and team meetings.

 

New Hampshire Family Voices, (NHFV), will continue to provide core materials related to the National Care Coordination Standards for CYSHCN to BFCS staff and contractors such as the Toolkit developed in FY2022. As part of the YHCTS project, they created a hard copy toolkit (with flash drive back up). In FY2023, they will create a “virtual toolkit” that contains not only tools, but serves as a compilation of tools, allowing coordinators to support youth and families in choosing tools that work for them; as it is not a one-size-fits-all process! One of the many benefits of the collaboration with NHFV is to assure the family perspective is considered when determining program guidance and instruction for implementation, in accordance with the guiding principles of the National Care Coordination Standards for CYSHCN.

 

Measurement and Assessment

In order to measure and assess the success of this new guidance, BFCS Evaluation Specialist, Data Analyst and program leadership will work with DoIT to review the current data collection capability of the SMS/PIH database. Following this review, the team will make recommendations for improvements and either adapting the system or reporting requirements. One early recommendation is to include a feature in which the Coordinator can check a box when a YSHCN identifies a goal during consultation and another when they achieve a goal during a transition planning encounter. The resulting data will supplement the information collected during annual satisfaction surveys, biennial needs assessment, and family focus groups. 

 

Systems Building

Health Care Professional Workforce Development

The CYSHCN Director and Clinical Program Manager will continue to work with Medicaid on projects related to Managed Care Organization (MCO) contract oversight, quality improvement and evaluation in order to assure access to and continuity of care. This will include promoting the Standards for Systems of Care for CYSHCN 2.0 (Standards) specifically those that address facilitating care transitions and transition to adult care. MCO contracts require that they develop and make available support services for the health care professional workforce, which include, at a minimum a training curriculum, in coordination with DHHS that addresses clinical components necessary to meet the needs of CYSHCN.

 

As part of the YHCTS contract, NHFV will continue to work with the MCOs, the Clinical Program Manager and Nurse Consultants, to promote and provide technical assistance in support of health care transition policy development and implementation. In addition, newly created Nurse Consultant positions will begin working with providers, including Area Agencies, to provide clinical expertise to care coordinators and service coordinators relative to supporting CYSHCN and their families.

 

Communications and Social Media

NHFV offers communication tailored for YSHCN and families including on the Health Care Transition webpage https://nhfv.org/projectsinitiatives/health-care-transition/. Resources will continue to be made available to promote health care transition information through a variety of social media platforms including Facebook, YouTube, and Twitter, that are all available as links on the webpage.

 

The YEAH Council (Youth for Education, Advocacy and Health Care) also creates and shares transition related content on their webpage https://yeahnh.org/ and via a variety of social media platforms including Facebook, YouTube, TikTok, Instagram, and Twitter. In FY2022, they created three podcasts, which will be described more fully in next year’s report. They plan for additional ones for the series “Health Care Transition Matters.” They will also utilize written publications including NHFV newsletter, Pass It On, to disseminate health care transition information and the website, Health Care Transition - New Hampshire Family Voices (nhfv.org), will be used as a repository for information and resources. 

 

NHFV will also continue to convene quarterly Youth Health Care Transition Advisory group meetings with diverse stakeholders including youth and family participants, BFCS, and primary health care practices. They will continue to see representation from each of the three MCOs in FY2023. In conjunction with the Advisory group, NHFV will develop methods for outreach to stakeholders and providers.

 

NHFV, coordinators, youth and families, the NH Chapter of the American Academy of Pediatrics, the NH Pediatric Improvement Project and other community-based partners will continue to network. Such relationships help increase potential outreach to health care providers and practices to encourage policy adoption and technical assistance. Documenting and reporting on transition policy adoption will be done using a tracking document.

 

While YHCTS will continue to conduct outreach and provide technical assistance to practices about the importance of policies and overall uptake of Got Transition™ six core outcomes, practices are losing their independence as they are absorbed by larger entities and face staffing challenges of their own. The reality is, it becomes more difficult to get these policies in place and more importantly, to have them utilized in a manner that truly informs transition planning. This was part of the reason NH opted to engage in systems building that infused health care into the transition planning across the continuum of care (within schools [Community of Practice]; Health Care Coordination and Family Support, and more directly engaging youth and families).

 

This endeavor will help raise awareness about the importance of making well-planned and informed decisions about health care as youth approach adulthood. This is significant for the client as well as the family/caretakers and helps provide assurance that important and needed services will continue despite changes in providers, Medicaid, Medicaid MCO’s or private insurance. Promotion of transition policies in the upcoming year should increase the number of TRAQ forms completed and enhance consumer awareness and access to adult health care. NHFV will disseminate annual surveys that address questions and concerns and help identify families’ needs and experiences on an ongoing basis.

 

Throughout the COVID-19 Public Health Emergency (PHE), health care and family support coordinators could not conduct in-person visits and adapted to using Zoom technology to meet with families and partner agencies when providing consultation and setting transition goals. Fortunately, in-person visits are slowly resuming as face-to-face meetings with a youth’s team builds relationships that have been lacking throughout the initial pandemic crisis.

 

Care Coordination and Family Support

The Bureau for Family Centered Services (BFCS) is eager to face the challenges of the next fiscal year. The biggest undertaking is the major re-design of service delivery, which includes the blending of the Health Care Coordination and the Partners in Health family support programs. This process involves the development of a new scope of services for community-based health care coordination with new guidelines and contractual obligations for vendors, revised data collection procedures and staff training. BFCS will continue to incorporate evidence-informed health care transition processes for YSHCN into care coordination and family support services offered primarily through community-based contracts.

 

In addition to utilizing the frameworks recommended by Got Transition®, BFCS will use the National Care Coordination Standards for CYSHCN to guide the redesign that includes health care transition services. Guidance will also include the recommendations provided by NHFV’s “Review of the National Standards for Care Coordination for CYSHCN: A quality improvement initiative for BFCS Health Care Coordinators” staff led BFCS health care coordinators (HCC). This report was generated following a detailed training and review of the National Care Coordination Standards for CYSHCN, and self-rating of their work in comparison to the Standards (June 2021), which included a domain on transition of care.

 

Two full time nurse health care coordinators will continue to provide these services through FY2023 after which they will move into new roles and all Title V care coordination will be provided through contracts with community-based agencies. Those state employees previously providing nurse health care coordination will take on a consultant role to help strengthen the system of care for CYSHCN. The Program Specialist III Coordinator will become the advisor, trainer and technical assistance expert working in collaboration with the Program Manager and the clinical team to support the regional contract agency staff in FY2024. These regionally based programs will provide enhanced health care coordination services, aligned with the National Care Coordination Standards for CYSHCN that includes family support.

 

The new scope of services will eliminate the need for duplicative application, intake and goal setting and leverage other state and federal funding, along with Medicaid, for improved efficiency and quality of services. This redesign process requires new thinking, open mindedness, skill and great attention to many details, e.g.., staff qualifications, family need, financial resources, and interagency collaboration etc. The RFP for the new program is anticipated for release in January 2023 with an implementation start date of July 1, 2023. 

 

One of the most important components of this process is to be mindful of family perspective and impact as policies, procedures and services are redesigned. Health Care and Family Support Coordinators, stakeholders, providers, and parents/families have been reviewing and offering feedback related to these efforts. As a key partner, NHFV will not only participate, but will provide guidance for development of a communication plan to assure incorporation of family-friendly and sensitive information, throughout the process. Their continued role as the Youth Health Care Transition Services Project contractor will be integral to the development of guidance related to that specific part of the new scope of services.

 

In order to succeed with the redesign process, BFCS will continue the work in FY2023, by process-mapping the steps of care coordination and family support, including application, eligibility determination, communication, care planning, goal setting, data collection/reporting, resources/funding, transition, and evaluation. The Systems of Care for CYSHCN Specialist with BFCS will engage the MCH Workforce Development Center for technical assistance with engaging stakeholders across the system including community-based agencies and providers. The purpose of this request will be to increase awareness of the process, provide clear understanding of the goals, and to encourage proposals for the FY2024 contract.

 

As the team identifies each step of the CYSHCN and/or his family’s journey, there are numerous “moving parts” to consider. Title V CYSHCN in NH hopes to create a model that can be scaled up moving the focus from direct service to helping others develop similar systems with BFCS as the conduit. The procedure and this process will continue to be a group effort and an ongoing project with all staff sharing their thoughts and ideas and suggestions. 

 

If activities are successful, NH will see an increase in the number of YSHCN who have a transition plan in place prior to their 21st birthday.

 

 

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State Performance Measure #2:

Percentage of families enrolled in BFCS programs who report access to respite. 

 

Objective:

To increase the number of families reporting access to respite care when needed from 62% to 75%, on the Bureau for Family Centered Services Needs Assessment & Satisfaction Survey, by 2025.

 

Strategies:

1. Re-determine the needs of families regarding respite
2. Collect and analyze data to support policy development and funding for respite
3. Review Relias trainings to support updated best practice standards
4. Re-engage the Caregiver Integration Team and assess the capacity to continue with environmental scan and strategic planning.
5. Include respite screening and access in Quality Improvement projects  
6. Attend the ARCH national respite conference
7. Assess the capacity to influence other sectors necessary to achieve goals

 

Background

Access to respite services has historically been identified as a priority area through several different assessment methods. In response, the Caregiver Integration Team (CIT) was formed to address access to respite and other respite quality improvement activities. The CIT developed a Charter, mapping out the goals over the next five years including a framework to guide systems change. The CIT made progress on identifying assessments, collaborating across department agencies, identifying needs and beginning to collect standardized information. In 2020, the COVID‑19 Public Health Emergency (PHE) affected the CIT’s ability to complete its plan in several ways including:

 

• Shifting of families’ needs and priorities away from respite
• A reduced workforce
• Re-allocation of resources

 

Due to the nature of the COVID‑19 virus and health guidelines recommending quarantine and isolation, families reported shifting from requesting provider respite services to utilizing natural family supports. The DLTSS Continuity of Operations Plan, or COOP, included reallocating resources including the DHHS workforce and activities. Staff were directed to prioritize core services as well as provide assistance within call and emergency centers and with vaccination efforts.  

 

Although the qualitative and quantitative information indicates less need for respite, BFCS is not confident that it accurately reflects the new normal and additional obstacles that families are now facing. As State Fiscal Year 2023 moves forward, NH will take this opportunity to re-assess where respite services fall within the needs of families. The following activities will help BFCS determine how to move forward with supporting the needs of families regarding respite services.

 

Re-Determine the Needs of Families Regarding Respite

During the pandemic, many families reported not wanting respite caregivers to enter the family home and instead used natural supports to provide respite or stayed home the majority of the time, to avoid contracting the virus. As the COVID‑19 virus evolves, it is important to re-assess the needs of families and its impact on respite needs. Re-determining respite needs through annual surveys, needs assessment conducted with the Council for Youth with Chronic Conditions (CYCC), and through family interactions/experiences will be planned throughout FY 2023.

 

Collect and Analyze Data to Support Policy Development and Funding For Respite

New data and a more in-depth analysis of data is required. The Bureau for Family Centered Services successfully hired a Data Coordinator whose skills are to collect and analyze data in an organized way to better understand the unique needs of families. Although New Hampshire is a small state, the needs of families across the regions differs. NH plans to reassess, collect, and analyze data from 2020 and after to understand how the pandemic impacted family’s needs. This information will help inform agencies and drive practice on the regional level to understand and respond to the needs of their community. NH intends to assess current needs, put a plan in place and implement the plan.

 

 

Review and Update Relias Trainings to Reflect Best Practice Standards

New Hampshire’s respite trainings are available on the Relias training platform, supported by BFCS, to provide opportunities for BFCS staff, contractors and the community providers. Although identified as a strategy in previous years, due to staff vacancies and competing priorities related to COVID‑19 PHE, these trainings have not been updated. BFCS’ quality improvement project will result in a reorganization of some staff positions. Individuals will be identified to review training content to ensure content provided in trainings is relevant and consistent with best practice recommendations. 

 

Re-engage the Caregiver Integration Team (CIT) and Assess the Capacity to Continue

Although the Caregiver Integration Team has been on hiatus for over two years during the COVID‑19 PHE, BFCS leadership is committed to engaging and participating in lifespan respite activities in NH. A reconvening will be scheduled in the fall of 2022, to discuss the feasibility of the previous plan for environmental scan and strategic planning given the reality of limited capacity and workforce challenges. In order to continue with this work, executive level sponsorship, funding, and staff will need to be identified to facilitate the work. Increasing access to respite requires system improvements including the availability of competent and well-compensated individuals to build the respite workforce.

 

Include Respite Screening and Access in Quality Improvement (QI) Projects   

Program Managers, coordinators and leadership will incorporate respite needs assessment into quality improvement activities as an ongoing strategy to identify and respond to the needs of families with CSHCN. With a newly reclassified position, a Program Specialist will work with managers to determine how assessment of respite needs can be incorporated into a standardized screening and assessment framework for CSHCN enrolled in Health Care Coordination and Family Support programs. New Hampshire Family Voices and other community stakeholders will be included in all QI activities to ensure families remain the center of improvement activities. Information and Referral (I&R) and financial assistance will continue to be available to assist with needed respite services.

 

Attend the ARCH National Respite Conference

The Bureau plans to send two representatives to the ARCH 2022 National Lifespan Respite Conference to learn about the most recent practices regarding respite access, care and information sharing. Ideally, a family representative from NHFV will join the travel team to provide the family perspective. Following the conference, BFCS will share best practices and success from other states and organizations with stakeholders, in an effort to consider options including re-thinking traditional respite care and possible ways to adapt to new changes.

 

Respite as a Title V Priority

Since the reported demand for respite has declined since before the PHE, BFCS will review the results of the CYCC Needs Assessment (Fall 2022), conduct a subsequent survey (Spring 2023), and engage community stakeholders throughout the year, to determine whether respite continues to be a priority for NH families with CSHCN. Throughout the process, BFCS will continue to provide limited resources and referrals to families enrolled in Health Care Coordination and Partners in Health Family Support who identify respite needs. Finally, in FY 2023, BFCS will explore the factors influencing the availability of respite services within the Title V programs and consider new strategies to address the needs of families with CSHCN,

 

 

[1] Child and Adolescent Health Measurement Initiative. 2019-2020 National Survey of Children’s Health (NSCH) data query. Data Resource Center for Child and Adolescent Health supported by the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB).Retrieved [07/25/22] from [www.childhealthdata.org].