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 #12.1:  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 July 1, 2021, increase the percentage of CSHCN enrolled in Title V programs, ages 14–20, who completed a TRAQ (transition readiness assessment questionnaire) in the past year, by 5%.
• By July 1, 2021, 60% of CSHCN enrolled in Title V programs, ages 14–20 and/or their family caregiver, will identify at least one transition goal in consultation with their Health Care Coordinator.
• By July 1, 2022, 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:

 

• Health Care Professional Workforce Development
• Care Coordination
• Communications and Social Media
• Measurement and Assessment

 

Data Analysis

BFCS will use the SMS and PIH databases to collect data. Currently, the system allows for the health care coordinator to record transition encounters as “TRAQ sent” and/or “TRAQ completed”. A system update will be required to add options to record “Transition goal identified” and “Transition goal met”. Instructions will be provided to health care coordinators to require that an encounter note be included in the documentation that identifies the goal.

 

On July 1, 2020, BFCS identified, 62 of the 452 (13.7%) YSHCN enrolled in Title V programs, ages 14–20, completed a Transition Readiness Assessment Questionnaire (TRAQ) in the past year (7/1/19 – 6/30/20). This will be used as the baseline for FY 2021 reporting.

 

According to the Medical Home Project Needs Assessment, of the 46% who identified that their child was at least 14 years of age, only 22% reported having discussions of how or when transition to an adult provider would occur. This is consistent with the 2017-2018 National Survey of Children’s Health data for NH, which identified that 21.5% of children with special health care needs received services necessary for transition (defined as having time alone with a provider, a conversation of the transition to occur, and actively working to address needed skills).[1]

 

Systems Building

Effective transition from pediatric to adult health care promotes continuity of developmental and age-appropriate health care for youth with special health care needs (YSHCN). Yet years of national, state and community studies continue to demonstrate that most YSHCN and families do not receive the support they need in the transition from pediatric to adult health care. Improvements are needed to raise awareness of youth and their families that maintaining health and continuity of care are important to attaining broader adult goals.[2]

 

BFCS will continue to support statewide transition readiness efforts through the Medical Home Project contract with NH Family Voices (NHFV) through June 30, 2021. Since 2013, work has been focused on fostering statewide medical home planning as it relates to children, including children and youth with special health care needs, through identification of support from policy and legislative efforts and providing Health Care Professional workforce development activities.

 

The Project will promote a health care transition policy for all practices, whether it outlines the transition of care from a pediatric practice to an adult practice, or from a pediatric model of care to an adult model of care within a family practice setting. The efforts of NHFV’s Project will continue to be guided by an advisory group of diverse stakeholders, with youth and family participants, as well as representation from NH Medicaid (including all three Medicaid Managed Care Organizations), BFCS, NHFV, and primary care practices. Efforts to further enhance membership with a commercial insurance representative and an additional primary care champion will continue to be a goal for this coming year. The Project will continue to track transition policy adoption within practices and will target outreach to practices to encourage uptake and offer technical assistance in order to further advance the adoption of processes that support successful transitions to adult primary care for all youth.

 

In SFY 2021, BFCS will develop an RFP to procure a new contract for SFY 2022 focused on providing support for Transition to Adulthood for both pediatric and adult health care settings. The action plan that correlates with identified strategies will be requested during the procurement process and at minimum include the following:

 

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

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

• BFCS/PIH Transition Readiness project review from 2020 and additional training and provide technical assistance (TA) as needed
• Support quality assurance and monitoring efforts that advance transition activities and 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 TA

 

BFCS acknowledges the importance of the state’s Transition Community of Practice (CoP) and commits to having a Health Care Coordinator (HCC) participate, to assure the health perspective is at the forefront of transition activities for youth with disabilities moving into the adult service system. Through her participation at state and local levels, the Coordinator will expand her ability to assist youth and their families’ transition from youth to adult health care services and independence. She will represent BFCS and YSHCNs at the annual Transition Summit which is a statewide opportunity for training, collaboration, and networking focused on post-secondary outcomes for students. The Summit presentations will be focused on topics of Collaboration, Transition for Specific Populations, Supported Employment or Skill Development Activities and Programs, and Transition Related Initiatives. The HCC will continue to facilitate CoP state meetings as requested and participate in the Summit Planning Committee. Although the annual Capital Region Transition Fair was cancelled in April 2020 due to the COVID‑19 Emergency, the HCC plans to participate in 2021.

 

Title V Specific Activities

The Bureau for Family Centered Services (BFCS) works to increase knowledge and the application of evidence-based and -informed health care transition approaches through education and training to health care professionals. In 2021, BFCS will continue to support NHFV training for Managed Care Organizations (MCOs) that will include transition of youth from pediatric to adult health care. The CYSHCN Director and Clinical Program Manager will continue to work with Medicaid on projects related to 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.

 

To promote coordination and collaboration related to children with medical complexity, BFCS will continue to contract with a community-based organization to offer consultation to health care professionals and parents through a Complex Care Network (CCN), to continue to expand the unique and impactful efforts (refer to parent testimonial below) of the interdisciplinary clinical evaluations for medically complex children.

 

The Developmental Pediatrician for the Complex Care Network has been accepted to the Harvard bioethics department and her capstone effort will be focused on ways to increase clinicians’ comfort level with medically complex children, providing ethical anticipatory guidance and supporting families’ informed choices. Most recently, she and BFCS leadership engaged in a discussion with the Catalyst Center to present this model to the CoIIN to Advance Care for Children with Medical Complexity (CMC).

 

Future MCH site reviews of Title V funded Community Health Centers will also gather data regarding medical home and transition policies.  However, as of this time, full on-site reviews have been put on hold since the COVID 19 pandemic. Virtual site visits including this type of data gathering are being conducted.

 

MCO contracts require that they develop and make available support services for the health care professional workforce, which include at minimum a training curriculum in coordination with DHHS that addresses clinical components necessary to meet the needs of Children with Special Health Care Needs. In SFY 2021, BFCS will seek technical assistance from the Catalyst Center to help provide a foundation for MCOs to develop this curriculum, in alignment with evidence based/informed practices and the Standards. 

 

BFCS will also incorporate evidence-informed health care transition for YSHCN into care coordination. In the coming year there will be an emphasis on educating staff to effectively evaluate completed and returned Transition Readiness Assessment Questionnaire (TRAQ) surveys in order to identify resources and education needed by youth and their families. In partnership with NHFV, training will be provided to all BFCS Health Care and Family Support Coordinators to support the distribution, data collection, and the expectations for consultation related to TRAQ.

 

BFCS will develop and establish program guidance for coordinators and to be incorporated into contracts that requires that all CYSHCN enrolled in Title V programs, ages 14–20 and/or their family caregiver, will receive an annual TRAQ consultation that includes identification of a goal and review of progress toward meeting previous year’s goal. Training will be provided in conjunction with this implementation. 

 

In order to measure and assess the success of this new guidance, BFCS will need to work with DoIT to create a new data indicator and add it to the web-based application used by Coordinators to collect data. The proposal will include a feature in which the Coordinator can check a box when a YSHCN identifies a goal during consultation and another when he/she achieves a goal during a transition planning encounter. The resulting data will round out the information collected during annual satisfaction surveys, biennial needs assessment, and family focus groups. 

 

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

 

In response to the COVID‑19 Emergency and subsequent restrictions on in-person activities, the Parent Information Center and NHFV recently established Transition Chats on Zoom.  Using this platform, a Transition Consultant provides a unique opportunity for families and students to learn about topics that include transition assessments, planning for post-high school, student-led IEPs and goal planning.

 

*   *   *   *   *   *   *   *

 

State Performance Measure #2:

Percentage of families enrolled in the Bureau for Family Centered Services (BFCS) programs who report access to respite

 

Objectives: To increase the number of families reporting access to respite care when needed from 62% to 75%, on the BFCS Needs Assessment & Satisfaction Survey, by 2025.

 

Strategies:

1. Explore options to increase public awareness of, access to, and availability of respite care providers including  those for families of CYSHCN with emergency respite needs
2. Collect and analyze data to support policy development and support for respite
3. Support updated competency-based training modules for respite care providers
4. Maximize the opportunity for intra-agency collaboration through the Department-wide Caregiver Integration Team (CIT).
5. Facilitate availability of respite resources for families through NH ServiceLink/NH Care Path.
6. Screen families and caregivers of CYSHCN for respite care needs and make them aware of available respite services in their community
7. Inform and assist families to access available respite services which may be provided in a variety of settings, on a temporary basis, including the family home, respite centers, or residential care facilities.
8. Explore transportation as a barrier to accessing out-of-home respite.

 

Data Analysis

New Hampshire will continue to collect and analyze data to support policy development and support for respite through the activities of the CIT and by conducting an environmental scan and/or needs assessment of the supply and demand for respite for CSHCN. Data will also be collected from BFCS programs’ annual family satisfaction survey, from families receiving services, when providing Information & Referral (I&R) and through Family-to-Family Health Information Services. Program Mangers will work together with Coordinators to develop screening protocols to assure that each family is assessed for respite needs. New data points will be added to the existing systems used by providers of BFCS services to capture information collected from newly developed screening protocols.

 

Systems Building

BFCS continues to maximize the opportunity for intra-agency collaboration through the Department-wide Caregiver Integration Team (CIT). As the convener of the CIT, BFCS will continue to use strategies for partnership development and stakeholder engagement and the framework of the National Standards for Systems of Care for CYSHCN v2.0 to advance NH’s respite infrastructure. Although the CIT Charter received enthusiastic support from the Associate Commissioner, progress was delayed in February 2020, due to the COVID‑19 Emergency.

 

The purpose of this integration team is to evaluate, strategize and implement system changes to support family caregivers. These team members will collaborate to identify system strengths and gaps in order to improve supports and services. The objectives of this integration team include but are not limited to:

 

• A multi-year plan to advance respite for family caregivers with a detailed set of activities that will lead to the implementation of that plan;
• Engagement in an ongoing network of state and community leaders engaged in similar work; and
• Access to a network of peers committed to collaborating and sharing resources to facilitate planning that will improve policies that support family caregivers.

 

The Team’s purpose and objectives align with the Standards for Systems of Care for CYSHCN 2.0, Social Services Block Grant (SSBG) Statutory Goals, and other state and federal guidelines. This includes but is not limited to the NH State Plan on Aging and the 10-year Mental Health State Plan to encourage thriving lives of the individuals and families in our communities.

 

Title V Specific Activities

BFCS will continue to provide free, confidential Family-To-Family services to families and professionals caring for children with chronic conditions and/or disabilities through a contract with NH Family Voices (NHFV) through June 2021. Through participation in meetings with state agencies and local and professional organizations, they ensure that the needs of CYSHCN and their families are adequately represented in system design and service delivery including that for respite.

 

BFCS will explore options to increase public awareness of, access to, and availability of respite care providers for families of CYSHCN such as the NH Family Caregiver Support Program which offers respite grants for grandparents and other relative caregivers who are 55 years of age and older. The respite grant funds help to provide occasional breaks for relatives by paying for child care, camp, structured after-school activities, or homemaker services.

 

Although NH no longer subscribes to the NH Provider Link as a way to search for respite providers, Coordinators are able to facilitate availability of respite resources for families through NH ServiceLink/NH Care Path. The newly hired CYSHCN Systems Specialist will explore and identify alternative methods for finding support for caregivers including a potential collaboration with Child Care Aware® of New Hampshire.

 

Recent needs assessment activities indicate that the lack of a trained and well-compensated workforce remains a significant problem for families seeking respite from the day-to-day requirements of caring for a child with special health care needs. In 2019, BFCS identified the need for updated competency-based training modules for respite care providers and will seek new ways to provide training to potential providers and to promote options for respite. To accomplish this, BFCS will continue to support the NH Lifespan Respite Provider Certification training through ReliasTM Learning, review the training materials, identify any required revisions, and arrange for updating as needed. This was planned for FY 20 but due to staff turnover, remains incomplete. The CYSHCN Systems Specialist will also lead the work on exploring e-Learning options for respite care providers and coordinators who work with families to provide appropriate referrals and information on selecting providers.

 

BFCS will continue to address the areas identified as “unmet needs” for respite through flexible funding options, designated campership/respite funds, and the exploration of family strengths and community supports. BFCS will also explore transportation as a possible barrier to accessing out-of-home respite.

 

In the coming year, BFCS will engage families and family organizations including NHFV, in the planning process and enhance data collection and analysis of its Information and Referral services in order to better inform and assist families to access available respite options which may be provided in a variety of settings, on a temporary basis, including the family home, respite centers, or residential care facilities.

 

[1] Child and Adolescent Health Measurement Initiative. 2017-2018 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 [04/03/2020] from [www.childhealthdata.org].

[2] Pediatrics November 2018, 142 (5) e20182587; DOI: https://doi.org/10.1542/peds.2018-2587