National Performance Measure #11:

Percent of children with and without special health care needs, ages 0 through 17, who have a medical home.

 

Evidence Based or Informed Strategy Measure #11.1:

The number of primary care provider practices who have adopted a transition policy.

 

Objective:

To increase from 50.9% (2016-2017 FAD baseline) to 56% the percent of children with special health care needs having a medical home by 2024.

 

Strategies:  

 

• Improvement of family partnerships with primary care providers.
• Collaboration with the NH PIP.
• Support and advocacy of embedding Medical Home components into Medicaid Care Management contracts/quality indicators.
• Outreach and education to families, public agencies, and providers to improve Medical Home awareness and understanding.
• Support for integrated care coordination including planning and support for transition.
• Facilitate incorporation of the evidence informed six core elements of transition into medical homes, in accordance with Got Transition™ recommendations.
• Facilitate the involvement of youth with special health care needs, through a selected vendor, to improve health care transition to adult medical services.
• Facilitate a Medical Home Advisory Committee through a selected vendor.

 

 

Data Analysis

 

The primary data for this indicator comes from National Survey of Children’s Health (NSCH).  As the smaller sample size in the 2017 survey limits the ability to review data for subgroups, the combined 2016-2017 data set is used for this report.

 

NH continued to outperform the nation on this measure for all children, with 50.9% of children with special health care needs and 60.1% of children without special health care needs identified as receiving care meeting medical home criteria.[1]

 

However, a disparity in access to a medical home continues to be reported by NH families who have children with more complex health care needs or who qualify based on mental health criteria.[2] While this is an issue that warrants continued attention these populations have reported slight increases in access to Medical Homes when compared to the data from the NSCH 2016 reporting. The data from 2016 compared to 2016/2017 reflected an increase from 46.4% to 48% for CYSHCN with more complex needs and an increase from 37.1% to 42.2% for CYSHCN who met mental health criteria. Unfortunately, the overall population of CYSHCN reported a slight decrease in access to Medical Homes with a rate of 52.3% in 2016 and 50.9% in 2016/17. These changes are small enough that the significance is unclear until we are able to compare to the results of the next NSCH.  

 

 

NH continues to perform better than the nation, on measures regarding health care transition particularly among youth without special health care needs. However, the data clearly identifies a need for continued efforts in this area.[3]

 

 

 

In addition to the data available via the National Survey of Children’s Health, a review of the Medicaid Consumer Assessment of Healthcare Providers and Systems (CAHPS) data compiled by the Agency for Healthcare Research and Quality (AHRQ) was conducted. NH data from the 2016-2017 CAHPS demonstrated that children covered by Medicaid experienced increased ability to obtain needed care from a doctor’s office after hours, on weekends and holidays, with families (78.9%- 85.2%).[4]

 

 

This report in improved access is important, as it matches a priority identified in the Medical Home Project’s survey of parents conducted as part of a needs assessment in the spring of 2019. When asked to rate core components of a medical home (access, continuity, comprehensiveness, coordinated, culturally-competent, family-centered), access was identified as most important by over 49% of the participants. 

 

The parent survey confirmed that awareness of the term medical home continues to be a challenge, with 65% of respondents reporting they were not familiar with the concept. When a definition was provided, 63% affirmed that they would identify their child’s practice as a medical home. Parent responses to questions designed to identify the presence of medical home components suggest this is the case, as illustrated by the following:

 

• Over 97% of families reported their child’s provider usually or always listened carefully to them, spent enough time with their child, explained things in a way that was easy to understand,  showed sensitivity to their family’s values and customs and helped them feel like a partner in care.
• Over 87% of families reported that they are at least somewhat satisfied with communication among their providers, with 86% reporting the use of after-visit summaries and 40% reporting the use of shared care plans.
• While 40% of families indicated that they could have used extra help coordinating care for their child in the past twelve months, only 6.35% of families reported that they never received as much help with coordination as they wanted.

 

Confirming again a need for continued work on health care transition, over 75% of parents whose child receives primary care in pediatrics, and is over the age of 14, stated that the provider had not yet discussed when or how transition to an adult provider would occur. 

 

Systems Building

 

SMS has supported medical home improvement through a competitively bid contract for over a decade. NH Family Voices (NHFV) was again chosen as the vendor to lead these efforts, with a contract awarded in November of 2017. The contract efforts focus on increased awareness and adoption of medical home, with a variety of activities guided by an advisory group comprised of a diverse group of stakeholders, representing patients, families, providers, community-based agencies and payers. The Medical Home Project Advisory Committee (MHPAC) was actively engaged in the development of a needs assessment regarding medical home in this reporting year. The MHPAC identified key questions, stakeholder groups and key informants, and outlined a process for data collection. The goal is to determine the story behind the data, to identify the needs of stakeholder groups for information, training, and optimal means of distribution thereof. The project anticipates the start of data collection in the early spring of 2019. NH Family Voices facilitates information sharing and education statewide as a component of the scope of service in the contract with SMS. The NH Family Voices website has a page dedicated to the Medical Home project where individuals, families, providers and policy makers can access information such as the “How do I create a Medical Home for my child with special healthcare needs” and a podcast with the Medical Home Project Coordinator that was posted in FY 18. 

 

 

 

 

Practice-Based Technical Assistance

NHFV continues to support practices seeking to enhance efforts for patient and family engagement through the Medical Home Project. However, the majority of practice based technical assistance efforts in this reporting period addressed health care transition, an area of need supported by results on both the NSCH and on the Medical Home Project needs assessment. Practices were supported to incorporate Got Transition’s recommended Six Core Elements of Health Care TransitionTM to the fullest extent possible.

 

Beginning in July of 2017, NHFV worked with a core team at Concord Pediatrics, consisting of a pediatrician, a nurse, and the office manager at Concord Pediatrics to develop a transition policy and process for their practice. As an independent practice, without an electronic medical record system, operationalizing the process required consideration of office flow and potential burden which create barriers to successful implementation. The practice reviewed the draft transition policy provided by Got Transition, and adopted with minor revision. In addition, interventions were targeted for three age groups (14, 17, and 21). At each target age, a readiness assessment (Transition Readiness Assessment Questionnaire -TRAQ) will be administered, and a handout will be given, containing a copy of the transition policy, and tips appropriate for that age. These materials were tested, receiving positive feedback from youth and families. Full implementation commenced in January of 2018. Additional resources were gathered into a toolkit, which was tested from March -June 2018. Results of this testing informed the creation of a transition toolkit for SMS programs.

 

 

Beginning in March of 2018, Dartmouth-Hitchcock assembled a large team to work on the Pediatric to Adult Medicine Transitions Project. The Project aims to develop a uniform transition policy and process across all primary care. Previous efforts within the Dartmouth-Hitchcock system were site-based, rather than system-based, and were not as successful as hoped due to insufficient adult primary care capacity. A new system-wide primary care alignment, improved capacity in adult primary care and enhanced access to the adolescent patient portal have created an optimal environment. NHFV was invited to participate in this process, and to share materials created for Concord Pediatrics. Dartmouth-Hitchcock branding of the documents has occurred, with additional revision of the documents likely. Intervention ages suited to their system (12, 16, and 19) have been chosen, and plans for how this will be embedded into EPIC (Dartmouth Hitchcock’s electronic medical record) have been identified. Pilot testing will commence in the late fall of 2018-spring 2019.

 

Statewide Partnerships and Collaborations

The NH Pediatric Improvement Partnership (NH PIP) is a state-level multi-disciplinary collaborative of private and public partners dedicated to improving child health through the use of measurement-based quality improvement processes in primary care settings. NHFV, SMS and MCH representatives serve on the steering committee, which serves in an advisory capacity to NH PIP staff, providing insight regarding strategic priorities as well as emerging needs.

 

SMS continues to be an active member of the NH Transition Community of Practice. This group was initially comprised of stakeholders within the education system, but has now engaged community and related service agencies. SMS has taken a leadership role in integrating health into transition planning across systems.

 

Membership in the Medical Home Project Advisory Committee (MHPAC) was greatly enhanced by the incorporation of former members of the NH Healthcare Transition Coalition, but key stakeholder groups were still unrepresented. To more effectively provide guidance regarding insurers, the group has been further enhanced by representation from two of the Managed Care Organizations (MCOs) contracted with NH Medicaid (Well Sense, NH Healthy Families), and from NH Medicaid. NHFV is working with partners at the NH PIP to identify a representative from commercial insurance. Recruitment of additional family members and providers is ongoing.

 

The YEAH Council is a youth driven group of individuals with special health care needs and / or disabilities. With support provided by a staff member at NHFV, this group develops materials, conducts trainings, and provides input regarding the needs of youth to the Medical Home project. A YEAH Council member and the NHFV staff member who facilitates the Council participate on the Medical Home Project Advisory Committee. To improve awareness of medical home and health care transition, members of SMS, YEAH and NHFV often co-present sessions at transition fairs and workshops across the state.

 

The CYSHCN Director has worked collaboratively with Medicaid on several projects related to MCO oversight and evaluation in order to insure access to care and that include;

 

• Having established a list of pediatric subspecialists that will be used to monitor for MCO network adequacy.
• Annual review of MCO Provider Handbooks.
• Review of MCO candidate’s for the mandatory Special Needs Coordinator position, to verify that they meet position requirements as outlined in the contract.
• Quarterly review of MCO Appeals reports to identify any performance issues that need to be addressed for vulnerable populations including CYSHCN.

 

Title V Specific Activities

 

Title V chose the existence of transition policies within primary care practices as an Evidence-Based or Informed Strategy Measure (ESM). To gather baseline data for this measure, NHFV supervised a LEND intern, providing guidance in the development of the tracking tool, the creation and launch of a survey (via Survey Monkey) and the entry of data. The intern encountered low provider response rates, and limited success with follow up phone calls. What was successfully obtained, coupled with data from the newly added questions via Maternal and Child Health contracts with Community Health Centers serves as the baseline measure. Input from providers regarding optimal means to obtain feedback will be sought during the Medical Home Project needs assessment, and may shape future methods to gather this data.

 

Community Health Center Activities

MCH added language on transition and transition policies to two of its CHCs site visit tools. Site visits are facilitated every other year. Additionally, transition policy language was added to the administrative tool, which the CHC fills out prior to a site visit. The incorporation of these changes provides an additional source of data, especially related to Medical Home/Transition for all children not just CYSHCN, as well as opportunities for both improved uptake in transition policies, and education regarding the importance of such processes.

 

Health Care Coordination

NHFV staff supported SMS program coordinators in the development and initiation of a process to formally address health care transition with all enrolled youth and families, starting at the first annual application update that occurs after the youth turns 14. The process relies on the use of TRAQ readiness assessments, for both youth and parents. The assessments, and results thereof, provide the framework for discussion with families and goal setting for skills building. Data regarding the distribution and collection of assessments for this first full year has been quite variable, and lower than desired, with some programs recording attempted distribution rates of 18% and others of 64%. Staff vacancies and turnover partially account for lower distribution rates. The results highlight the need for more training as well. In May of 2018 a change was made to improve distribution; readiness assessments are automatically printed when an update application is generated for a youth over the age of 14.

 

 

 

SMS continues to prioritize efforts regarding Health Care Coordination through a network of contracted community-based and state-based coordinators. These SMS Health Care Coordinators (HCC), work in collaboration with coordinators sited within primary care offices, tertiary care centers and MCOs. The concept of a remotely located, part-time health care coordinator position in the northern most region of NH was developed this fiscal year. The role will offer a presence and familiar resource to families in an area of the state that has limited resources and access to services. It is envisioned that this will provide a link to families in search of programs and services for their children with special health care needs.

 

SMS Health Care Coordinators meet monthly as a group to collaborate, share resources, discuss cases and concerns. These meetings serve as a forum for the coordinators to bring issues to the table, work through difficult situations and resolve problems together that will best benefit the families served.

 

In recognition of the value offered by such a practice, a joint meeting of agencies that provide services to children with special health care needs was held in March of 2018. The meeting gathered SMS health care coordinators, Partners in Health and Area Agency family support coordinators and members of NH Family Voices. Discussion centered on the Standards of Quality for Family Strengthening and Support, and an opportunity for discussion of common barriers, brainstorming and collaboration, building the strength of the network that serves families.

 

SMS has offered interdisciplinary Neuromotor Clinics for many years, indeed it is the last of these clinics supported by Title V. However, over the last several years the Neuromotor Clinic capacity has declined significantly and a Network that was comprised of five (5) separate locations has contracted down to one site. Contributing factors to this change were workforce limitations, in particular Pediatric Orthopedics as well as scheduling and transportation issues for families. In FY 18 a contract was awarded that successfully launched the Special Medical Services Complex Care Network. This program was fashioned in order to meet the needs of families that were formerly followed by the Neuromotor Programs as well as for families and providers of CYSHCN who were in need of special consultation.

 

The Complex Care Network (CCN) utilizes a three-pronged approach to provide consultative and direct services to NH children with complex medical needs. The CCN focuses on education (workforce development) activities for community–based providers; consultation from experts on individual children’s needs/concerns; and specialty clinics for children with complex health care conditions. The Complex Care Network team is comprised of a developmental pediatrician, pediatric physical therapist, an educator and a coordinator (additional specialist can be involved as needed such as psychology, nutrition, etc.). The team constitutes a resource with vast knowledge, assisting families, schools, and other health providers in answering questions, coordinating medical services, and acting as both a referral source and resource. Here are examples of services and supports offered by the Complex Care Network in its first year:

 

SMS continues to enhance public health services and systems, identify and support enabling services, and offer gap filling direct services to assure that CYSHCN have access to needed specialty care. The public health services and systems work is the responsibility of the SMS state office, particularly the CYSHCN Director and CYSHCN Systems Specialist along with the contracted work of NH Family Voices. The enabling and direct services are primarily supported by contracted services include Child Development Diagnostic Clinics, Neuromotor Interdisciplinary Clinics, Nutrition and Feeding & Swallowing Consultation, Psychiatry Consultation, Health Care Coordination (both contracted and state office staff), and NH Family Voices as the Family to Family Health Information Center.

 

*   *   *   *   *   *   *

 

State Performance Measure #2:

Percent of children enrolled in SMS who report access to respite

 

Objectives: To increase the number of families reporting access to respite care, when needed, from 61% (2014 baseline) to 70% on the SMS Satisfaction Survey by 2020.

 

Strategies:

 

• Analysis of available data to support policy development and support for respite
• Facilitation of Statewide Respite Coalition (through January 2018)
• Exploration of options for increasing public awareness of access to and availability of respite providers
• Supported competency-based respite provider training modules
• Maximized the opportunity for intra-agency collaboration as a result of the creation of a new Division of Long Term Supports and Services that has agencies who serve families in need of respite across the lifespan.
• Identified shared activities that could be implemented with the Bureau of Community Based Military Services to support families’ respite needs.
• Facilitated the availability of respite tools for families through NH ServiceLink/NH Care Path.

 

 

Data Analysis

 

The 2010 Title V Needs Assessment indicated that respite was one of the top ten priorities for families caring for CYSHCN in NH. Despite a concerted statewide effort to improve access to and availability of respite services, it has continued to be one of the least available services and has been identified frequently and consistently as an unmet need across SMS and Family Support programs and services.

The data for this indicator comes from the Effectiveness of SMS for NH’s Children & Youth with Special Health Care Needs Bi-Annual Survey and Needs Assessment Report. In 2016, results indicated that only 62.3% of the 424 individuals, who responded to the survey and identified respite as a need, were able to access care when needed. The 2018 Bi-Annual Survey results were surprising, as more than 50% fewer individuals indicated a need for respite than did in 2016. However, since the overall response rate to this question was also lower a more accurate comparison is that of the % of question respondents who indicated a need for respite. In 2016 the % indicating a need for respite was 70% and in 2018 the % was 42%. A possible explanation for this difference is that families self-select whether or not to answer the survey and it may be that there were simply fewer families who answered who also needed respite.

In 2018, the Bureau initiated a new Information and Referral feature to the database that will provide new information in 2019, about respite needs of individuals and families not receiving SMS or PIH services.

 

 

Systems Building

 

Background

In 2009, SMS was the first children’s agency to be the recipient of a Lifespan Respite grant. Several state and community agencies worked in collaboration with SMS on grant activities, including the Bureau of Elderly and Adult Services (BEAS), Bureau of Developmental Disabilities (BDS), Bureau of Behavioral Health (BBH), Division of Children and Youth and Families (DCYF), National Alliance on Mental Illness–New Hampshire (NAMI-NH), New Hampshire Family Voices (NHFV), and the College of Direct Support (CDS). These partners became the NH Lifespan Respite Coalition (LRC) along with other stakeholders who meet, monitor and guide respite efforts.

 

In July 2017, NH applied to ACL for the Lifespan Respite Care Program: Advancing State Lifespan Respite Systems Grant. The proposal was prepared in partnership with the LRC and key stakeholders to expand and maintain a statewide coordinated lifespan respite system that builds on the infrastructure currently in place. The goal of proposed project was to improve the delivery and quality of respite services available to caregivers of individuals with disabilities by expanding and coordinating existing respite systems across the state. In addition to applying for the grant, core members of the LRC advocated for funding of a dedicated state-level staff to promote the provider training and use of the registry. Unfortunately, NH was not selected to receive the award.

 

Statewide Respite Coalition

Membership in the LRC decreased and the remaining members indicated that NH Provider Link and the website were difficult to maintain and manage without dedicated staff. The Family Support Systems Administrator attended Take Off with Respite – 2017 National Lifespan Respite Conference, in Huntsville, AL, in October 2017, seeking new strategies to bring back to New Hampshire’s struggling Coalition. Energized with ideas from other states, the Administrator presented a plan for strengthening the LRC. Despite the proposal and support offered to hold a strategic planning event, the core members were discouraged by the inability to secure immediate funding for a coordinator and the discontinuation of support for the NHProvider Link from its host agency. The LRC co-chairs announced the disbanding of the Coalition as of January 2018.

 

Interagency Collaboration

Following this decision, DHHS staff who are responsible for and/or interested in the topic of caregiving met to discuss the increased need across DHHS for resources to support caregivers.  The group discussed ways to explore, inform, and coordinate activities in this area. Relevant DHHS staff, program representatives, and external stakeholders shared information on activities and resources, and discussed next steps. However, without a strong lead for this work, a second meeting never occurred.

 

SMS continued to work toward System Standards for Respite Care, using the Standards for Systems of Care for CYSHCN, such that respite, both planned and emergency is available to all families and caregivers of CYSHCN. Despite NH’s respite work having been at a systems level under the earlier Lifespan Respite grant, lack of resources and capacity resulted in a deterioration of this infrastructure and there are still unmet needs reported by families across the Family Support System for CYSHCN.

 

Respite continued to be an agenda item at Family Support Service Coordinator and Family Support Coordinator meetings, in order to promote the importance of respite and provide updates and guidance on how to share information with families about available respite services and help them to access them. Families receiving services through SMS programs were screened for respite care needs as part of the application and intake process. Some agencies provided a list of potential providers and helped families locate someone and others left the search up to the family.

 

Training

SMS & PIH continued to support the training needs and opportunities for respite care providers throughout 2017 through the web-based training application accessible on the http://www.nh providerlink.org/ (also referred to as the Respite Locator). NH Lifespan Respite Provider Certification training consists of online courses through ReliasTM Learning. This is a self-guided learning tool, which contains up to five courses for each competency. Courses range from the basic knowledge of being an in-home provider to diagnosis-specific courses for all age groups. The course work includes, but is not limited to patient rights and responsibilities, cultural diversity, infection control, HIPAA Regulations and documentation, and a variety of training on specific health conditions. In FY 2018, the web-training application access point was the SMS state office and training modules on Cultural Competence for the DSP, Respecting Cultural Diversity in Persons with IDD, were added to ReliasTM Learning

 

Public Awareness & Access/Availability

The goal for FY18 had been to strengthen the Lifespan Respite Coalition, continue to support and improve public awareness of the NH Respite provider locator and to analyze available data to support respite policy development. However, the inability for the LRC to secure funding and locate a new VISTA volunteer significantly contributed to the ultimate dissolution of the Respite Coalition. The ongoing use of the Respite Locator had been possible due to a more formal partnership with one of the Area Agencies. Unfortunately, that partnership was discontinued by the Area Agency but the SMS state office was able to resume responsibilities for linking interested providers to the ReliasTM Learning for training.

 

 

Title V Specific Activities

The CYSHCN Systems Specialist, as the lead for respite activities during the reporting period, surveyed the members of the LRC to assess the degree to which individuals were engaged in the work of the Coalition. In addition, the Systems Specialist offered information and resources from the ARCH National Respite Network and Resource Center and explored options for improving the NH provider registry through Rewarding Work (organization that hosts a website with Respite Locator) to meet the needs of families.

 

The Rewarding Work Respite Locator provided a resource for families and organizations throughout New Hampshire; however, the data showed that few people were using it.

 

The Family Support & Systems Administrator is the NH respite point of contact (as identified on the ARCH website) and fielded approximately 19 calls during the reporting period where the caller indicated respite as an area of concern. The Administrator’s primary referral recommendation for families/caregivers was to contact NH ServiceLink/NH Care Path.

 

SMS’ organizational placement in the state’s Division of Long Term Supports & Services (DLTSS) promoted the coordination and improvement of statewide respite services. The Bureau of Developmental Services’ network of Area Agencies and SMS’ Partners in Health program both provide Family Support services including respite. The Family Support & Systems Administrator continued to provide administrative oversight for Family Support, which lent itself to additional coordination and integration of statewide respite services under DLTSS.

 

*   *   *   *   *   *   *

[1] Child and Adolescent Health Measurement Initiative. 2016-2017 National Survey of Children’s Health (NSCH) data query. Data Resource Center for Child and Adolescent Health supported by Cooperative Agreement U59MC27866 from the U.S. Department of Health and Human Services, Health Resources and Services Administration’s Maternal and Child Health Bureau (HRSA MCHB). Retrieved [05/27/19] from www.childhealthdata.org. CAHMI: www.cahmi.org.

[2] ibid

[3] ibid

[4] NH Department of Health and Human Services. Bureau of Quality Assurance and Improvement. Report generated on Jun 01 2019 at 11:28. [http://medicaidquality.nh.gov]