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 (discontinued)  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.

ESM 12.2 (new) The percent of young adults with special health care needs, ages 14 to 21, who achieve a goal that was set following completion of the Transition Readiness Assessment Questionnaire (TRAQ).

Objectives:

• By July 1, 2021, 60% CSHCN enrolled in Title V programs, ages 14 to 21 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 to 21 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
• Other Workforce Development including Title V staff, family support, MCOs, youth, families, etc.
• Care Coordination
• Communications and Social Media
• Measurement and Assessment

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). 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. The 2018-2019 National Survey of Children’s Health data identified that 26.4% of NH’s 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), a rate that continued to exceed the nationwide rate of 22.9% for YSCHN.[1]

Throughout FY 2022, care coordinators continued to use the SMS database to collect data and monitor program efforts regarding health care transition. A system update to add options to record “Transition goal identified” and “Transition goal met” was postponed from 2021, due to the COVID-19 Public Health Emergency (PHE) and staff turnover/vacancies. Despite the delay, the BFCS Data Analyst continued work with the DHHS Project Management office and DoIT to conduct an Operations Review of the BFCS data systems during which some concerns were raised about the integrity of the existing data and reporting functionality.  The project was scaled back as priorities shifted and the final approach was a facilitated series of meetings focused on learning how to manage an older database system, cross walking common variables and knowledge transfer. Recommendations were made to support specific budgetary investment in a new system that would provide the following:

• Both case and document management
• Ability to export full datasets
• Basic reporting functions
• Comprehensive data conversion plan
• Access to users outside the state network
• Linkages with other major systems at DHHS for data quality purposes

The CSHCN Director would use these recommendations during the 2024 - 2025 biennium budget process.  In the interim, it was determined that there was insufficient documentation of procedures to onboard new staff properly and the Planning Analyst needed to understand the data. A reverse engineering process was recommended in addition to further training. A plan was made to standardize data entry and develop a user’s guide and training for all staff.  

Because of these inconsistencies and delays, data analysis for this measure was especially challenging and a new ESM was established to better align with the work being done by health care coordinators to support youth health care transition in NH.  In FY 2022, 56 of 146 (38%) of YSHCN[2] enrolled in BFCS programs completed a TRAQ, a slight decrease from 56 of 146 (40%) in FY 2021. Of those who completed a TRAQ in FY 2022, 21 (38%) identified a goal following consultation with a Health Care Coordinator and eight YSHCN (38%) met this goal within one year. Youth’s goals were primarily focused on learning more about their health condition and managing their own medications while families’ goals were often related to guardianship and services after the age of 21.

Systems Building

Through the Youth Health Care Transition Services (YHCTS) contract, awarded to NH Family Voices (NHFV) in FY 2022, BFCS provided statewide services to YSHCN, their families, caregivers, family support and health care coordinators, and health care providers and/or practices. Activities in this contract focused on providing support for transition to adulthood, within pediatric and adult health care settings, and across the system of care for CSHCN.  NHFV provided activities designed to accomplish the following:

• 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 workforce 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.

NHFV, as the YHCTS contractor, and one of the BFCS Nurse Consultants, Kelley Rozen, RN, participated in the state’s Transition Community of Practice (CoP) to assure that the health perspective was infused into all transition planning for youth with disabilities moving into the adult service system.  Through participation, at state and local levels, Ms. Rozen was able to assist youth and their families’ transition from youth to adult health care services and move toward greater independence.  In addition to monthly attendance, she facilitated several CoP state meetings and participated in the annual Transition Summit Planning Committee. As the representative of BFCS and YSHCNs at the annual Transition Summit, Ms. Rozen was an integral part of this statewide opportunity for training, collaboration, and networking focused on post-secondary outcomes for students with disabilities. She also attended the quarterly Youth Health Care Transition Services Advisory Committee meetings with community stakeholders, led by NHFV. The Annual Transition Fair for 2022 was cancelled, due to the COVID-19 PHE.

The Youth Health Care Transition Services contract provided opportunities to increase the knowledge and the application of evidence-based and –informed health care transition approaches. The contractor, NHFV, provided health care professional workforce development across systems of care who served youth of transition age, included health care providers, Managed Care Organizations, health care coordinators, and family support coordinators. These activities enabled service providers to broaden opportunities for youth and families to access the supports needed to ensure smooth health care transitions.

BFCS also incorporated evidence-informed health care transition processes for YSHCN into care coordination services provided through a community contract and by state health care coordinators. Staff utilized the frameworks recommended by Got Transition® and the National Care Coordination Standards for Children and Youth with Special Health Care Needs (The National Academy for State Health Policy, 2020) to guide their work. Program staff and managers referred to the 2021 recommendations developed through a review of the National Standards, led by NHFV Associate Director, Sylvia Pelletier, to inform program planning.

NHFV staff consulted with members of the Youth Health Care Transition Services Advisory Committee regarding health care coordinators’ concern about asking families to complete the TRAQ when the child/youth was unable to complete them independently. Family members and the providers agreed with the importance of the use of the TRAQ, but also the importance of framing the conversation with sensitivity. Training was arranged for August 2022 to assist Coordinators with having difficult discussions.

In 2022, BFCS staff were trained to evaluate the Transition Readiness Assessment Questionnaire (TRAQ) surveys completed by youth and families in order to identify needed resources and education. NHFV provided training to all BFCS Health Care and Family Support Coordinators to support the distribution, data collection, and the expectations for consultation related to TRAQ. Trainings and educational opportunities included the following:

• Kearsarge Transition Night
• Guardianship
• Supported Decision Making
• Parents Leading the Way
• Health Care Transition 101
• Health Care Transition: Goal Setting Workshop

In addition to offering training opportunities, NHFV staff attended trainings on a variety of topics including, but not limited to health care transition to maintain their own skills and ability to support staff and families. Trainings were presented by entities such as the Lucille Packard Foundation, Catalyst Center, Family Voices, Got Transition, RAISE Center, NASHP, and National Resource Center for Patient and Family Centered Medical Homes, among others.

NHFV staff converted the “Transition Toolkit” (previously hard copy with a USB flash drive) into a virtual toolkit, compiling tools and resources for coordinators and families. A workgroup comprised of representation from BFCS staff and coordinators met monthly and provided feedback on materials development.  Several of the materials were piloted with families. Each issue of the Pass It On newsletter contains an article on health care transition. A podcast series, “Health Care Transition Matters” has been created, with three episodes fully edited and transcribed.

BFCS developed and established program guidance for coordinators that were subsequently incorporated into contracts requiring all CYSHCN enrolled in Title V programs, ages 14 to 21 and/or their family caregiver, to receive an annual TRAQ consultation that includes identification of a goal and review of progress toward meeting previous year’s goal. Training was provided in conjunction with this implementation. 

In order to measure and assess the success of this new guidance, BFCS worked with DoIT to create a new data indicator that was added it to the web-based application used by coordinators to collect data. One recommendation was to include a feature in which the Coordinator can check a box when an YSHCN identifies a goal during consultation and another when he/she achieves a goal during a transition planning encounter. The resulting data would round out the information collected during annual satisfaction surveys, biennial needs assessment, and family focus groups. As previously stated, an analysis of the 2022 data revealed the need for additional training since data entry was inconsistent across programs & providers. 

The CSHCN Director and Clinical Program Manager continued work with NH 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 included promoting the Standards for Systems of Care for CYSHCN 2.0 (Standards) specifically those that address facilitating care transitions and transition to adult care. The Clinical Program Manager and Nurse Consultants, were available to provide technical assistance to the MCOs in support of health care transition policy development and implementation, however, there was little interest from the MCOs in 2022.   

NHFV staff actively participated in the BFCS monthly Health Care Coordinator’s meetings, answering health care transition related questions that were primarily focused on the implementation of the TRAQ. In addition, they offered communication tailored for YSHCN & families including the Health Care Transition webpage https://nhfv.org/projectsinitiatives/health-care-transition/.  Resources were available promoting health care transition information through a variety of social media platforms including Facebook page, YouTube, and Twitter that were all available as links on the webpage.  The YEAH Council (Youth for Education, Advocacy and Health Care) also created and shared transition related content on their webpage https://yeahnh.org/ and via a variety of social media platforms including Facebook, YouTube,  Instagram, and Twitter.

In 2022, the Parent Information Center and NHFV continued to offer Virtual Transition Chats, which provided an opportunity for families and students to learn about a variety of topics relevant in transition planning; including health care transition, planning for post-high school, student-led IEPs, decision-making and goal setting. 

Throughout the COVID-19 PHE, health care and family support coordinators could not conduct in person visits and adapted to using Zoom and Teams technology to meet with families and partner agencies when providing consultation and setting transition goals. It became clear that in-person meetings with youth and their team was important in building relationships and BFCS Coordinators were eager to return to using this method, following Universal Best Practices[3].

In their 2022 annual report, NHFV expressed concern that potential loss of coverage following the end of the PHE may create further barriers for youth attempting to transition to adult providers of care. Program staff and Health Care Coordinators promoted and encouraged Medicaid redetermination despite the temporary hiatus on disenrollment and continued to work closely with NH Medicaid and the Bureau of Family Assistance throughout the unwind.

*********

State Performance Measure #2:

Percentage of families enrolled in 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 Bureau for Family Centered Services Needs Assessment & Satisfaction Survey, by 2025.

Strategies:

1. Explored options to increase public awareness of, access to, and availability of respite care providers including those for families of CSHCN with emergency respite needs.
2. Collected and analyzed data to support policy development and support for respite.
3. Unable to conduct a comprehensive environmental scan of respite needs and resources.
4. Supported competency-based training modules for respite care providers, but were unable to update.
5. Unable to maximize the opportunity for intra-agency collaboration through the Department-wide Caregiver Integration Team (CIT).
6. Facilitated availability of respite resources for families through NH ServiceLink/NH Care Path.
7. Screened families and caregivers of CSHCN for respite care needs and make them aware of available respite services in their community.
8. Informed and assisted 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.
9. Did not explore transportation as a barrier to accessing out-of-home respite.

Data Analysis

NH continued to collect and analyze data to support policy development and support for respite through implementation of Health Care Coordination, Family Support, and Information & Referral.  However, due to other priorities at the Department-level, the Caregiver Integration Team (CIT) was not re-instated and budget cuts in FY 22 and 23 eliminated “special projects” funding that was planned to conduct an environmental scan. 

The Council for Youth with Chronic Conditions (CYCC) contracted with Community Health Institute (CHI) to conduct a needs assessment with findings including families’ lack of access to the services they need due to lack of  eligibility and availability. According to the report, 

Seventy-nine percent of survey respondents said they did not have reliable access to respite care, defined as when a professional caregiver gives someone a temporary break (as short as a few hours) from primary caregiving (n=53). Ninety percent of survey respondents also said that their child received no form of outside child care such as the type offered through after-school programs, a babysitter, or a child care center (n=49). High cost and an inability to find providers that could manage their child’s condition were the most frequent reasons for being unable to obtain child care. The lack of these types of care was also cited in focus groups and key informant interviews as well as an inability to obtain any or adequate in-home nursing services. As one provider explained, “A lot of families, in terms of respite . . . just don’t have a break just because nobody feels competent to take care of them. And nursing care, how many families have 40 hours, and they’re lucky to get five or 10?”[4]

Data was also collected from BFCS’ programs’ annual family satisfaction survey, from direct communication from families receiving services, when providing Information & Referral (I&R), from reports from the Council for Youth with Chronic Conditions and through Family-to-Family Health Information Services. Families continued to report anecdotally, that the lack of a trained and well-compensated workforce was a significant problem when seeking respite from the day-to-day requirements of caring for a child with special health care needs.  When asked, only 21% of those responding to the CYCC survey indicated they have reliable access to respite care (n=53). (Carlisle, Lopera, Robert,, Spaulding, & Trojnor-Hill, 2022)

Program Mangers worked with Health Care and Family Support Coordinators to develop screening protocols to assure that each family was assessed for respite needs.  A data entry and collection evaluation was planned as part of Quality Improvement “Lean” process review.  One of the goals was to help determine new data points and data reporting methods that could be used to improve data quality within the existing systems. The main outcome of the review was to invest training and time into the Data Analyst who needed a greater understanding of the data in the system, before making any improvements to the system. The Data Analyst left the position early in FY 2023 and the new Data Coordinator has an exceptional understanding of the data and the system.

The PIH data system continued to have barriers to collecting and reporting on accurate information related to respite supply and demand. Anecdotally, in their 2022 annual reports, most Partners in Health Family Support programs noted that there were little respite needs within the last year despite some encouraging respite for self-care. In addition, all ten regions, statewide, reported issues of limited availability of respite providers. Once again, the CYCC report indicated that 33% of those responding, were unable to get the respite help they needed (Carlisle, Lopera, Robert,, Spaulding, & Trojnor-Hill, 2022).

Since CSHCN are often eligible for Bureau of Developmental Services (BDS), communication with NH’s Area Agencies for Developmental Services’ Family Support Coordinators and Family Support Councils continued to explore the need for respite. Family Support Council funding is intended to support individuals or families with challenges they face due to their or their child’s condition in accordance with the He-M 519.04 categories that include environmental modifications (Emods), respite, crisis intervention, workshops/trainings, social interactions, family networking, etc. Discussions throughout the year included appropriate invoice documentation of council funds within each category for supporting families.

The below chart shows a wide percentage range of Family Support Council funds used within each region for respite to support families.

To understand the respite needs for caregivers of CSHCN who are not served by BFCS programs, NH planned to procure a contract for a vendor to conduct an environmental scan and  analyze data on the need for and availability of respite resources across the state; beyond those served by BFCS.  While this is an ongoing goal, it was not completed in FY 2022 due to biennial budget cuts to “special project” that was directly related to the COVID-19 Public Health Emergency (PHE).

Systems Building

BFCS was unable to reconvene the Caregiver Integration Team in FY 2022, primarily due to workforce issues and the Division’s prioritization of the redesign of the Developmental Services System following a review of the overall Department’s operations and programs, conducted by Alvarez & Marsal – Public Sector Services (A&M) in FY 2021. The intent of the review was to identify opportunities for DHHS and its programs to more effectively and efficiently support the citizens of New Hampshire including CSHCN.

As BFCS worked with BDS and with families and stakeholders throughout FY 2022, staff requested input about the need for respite.  Through participation in meetings with state agencies and local and professional organizations, NHFV assisted the Department by ensuring that the needs of CSHCN and their families were adequately represented in system design and service delivery including that for respite.

Title V Specific Activities

As BFCS explored options to increase public awareness of, access to, and availability of respite care providers for families of CSHCN it was evident that increasing the pool of qualified providers is needed to avoid additional frustration of family caregivers. 

Coordinators are encouraged to refer families (needing respite) to NH ServiceLink/NH Care Path, https://www.servicelink.nh.gov/index.htm. In FY 22, BFCS met with the Charting the Life Course Team, including the state lead for ServiceLink, and others in DHHS to strategize about ways to improve the coordination of resources for families, including caregivers of CSHCN. 

In FY 2022, the CSHCN Systems of Care Specialist was responsible for coordinating the Quality Improvement project to redesign the Health Care Coordination and Partners in Health (PIH) programs and was unable to dedicate time to explore and identify alternative methods for finding support for caregivers.  However, through this process, NH learned more about the needs of families and stakeholders relative to respite and she was able to make some recommendations for data collection to help better understand the need for respite as we unwind from the COVID-19 PHE.

BFCS continued to support the RELIAS training platform for training needs for respite care providers. Annual maintenance of the training materials is still needed to provide revisions and arrange for updating as needed.    

Respite for families with children with special health care needs continues to be a challenge.  Funding can be applied for through Area Agency or Partners in Health family support programs however, there can be a long wait list and these funds are limited.  Families report to the health care coordinators, that it is hard to find their own provider for respite. The In-home Support Waiver through the Area Agency can be helpful yet there is also a wait list for this needed service.  COVID-19 further complicated the lack of respite issue when the pandemic emerged in NH in March 2020.  The public health issue of COVID-19 stay at home order canceled services for those who did have respite funding and in-home waiver. This continued in FY 2022, as in-home providers are still very difficult to secure.  There continues to be an LNA shortage for home care respite in NH but some families were able to obtain skilled nursing services.   

Cedarcrest Center is located in the southwestern part of the state offering children with complex medical and developmental needs a healthy, safe environment where they can grow to their fullest potential.

The Center provides a warm home-like setting where children are surrounded by caring, dedicated staff who encourage and nurture them every moment of the day. Cedarcrest Center’s short-term stay option is designed for those times when families caring for a child with complex medical and developmental needs at home, need access to respite care for a few days, a week or even a month. Each short-term stay at Cedarcrest Center is developed collaboratively with a child’s parents or guardians, primary care physician and specialists, and the Center’s medical director and director of nursing services. During a short stay, children are included in all aspects of the residential program, with participation in school programming at the discretion the local school district.

Workforce remained a concern for families throughout FY 2022; with families continuing to face challenges filling Medicaid-approved nursing hours, finding respite care providers and/or hiring direct support professionals. Flexibilities afforded to families during the public health emergency to be compensated for unfilled staffing hours (whether as PCAs for a portion of unfilled approved nursing hours or waiver staff positions) have helped to compensate families for the work they are doing. However, this work made it difficult to maintain employment outside of the home and impacts caregivers stress levels in the end.

BFCS continued 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). In their annual report, NHFV reported that families had difficulty accessing respite, but it was rarely the main purpose of a call. Families reported being told there is no funding, or report they have funding but no staff. While some families who have children with medical complexity were able to access Cedarcrest for respite, others are not.  Families whose children are medically complex but ambulatory and/or have behavioral needs beyond what can be managed by Cedarcrest continued to find it very difficult to secure respite providers who can safely support their child. NHFV provides information to clarify funding options for respite, describe methods used by families to find providers, and encourage families to connect with one another (such as via the Facebook group) to find creative solutions during the current workforce shortage.

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 continually works to engage families and family organizations including NHFV in the planning process to enhance data collection and provide analysis of its Information and Referral services in order to better inform and assist families to access available respite options.  NH strives to provide and maintain respite services to serve 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. 2018-2019 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 [04/23/2021] from [www.childhealthdata.org].

[2] Youth with Special Health Care Needs (YSHCN) are those ages 14 to 21 years.

[3] State of NH Governor Economic Reopening Taskforce, April 2021, Universal Best Practices, https://www.covidguidance.nh.gov/, accessed 20 August 2021.

[4] Carlisle, A., Lopera, A., R. K., Spaulding, R., & Trojnor-Hill, T. (2022). NH Council for Youths with Chronic Conditions 2022 Families Needs Assessment. Concord.