The Maternal and Child Health Program (MCH) strives to improve the health, quality of life, and well-being of children and youth with special health care needs (CYSHCN) and their families. The Fiscal Year (FY) 20 Needs Assessment findings led Texas to select three priorities for our program improvement efforts: medical home, health care transition, and community inclusion.

NPM 11: Percent of children with and without special health care needs having a medical home.

According to 2018-2019 National Survey of Children’s Health (NSCH) data, CYSHCN makes up over 17% of children age 18 and younger in Texas. This is slightly less than the nationwide percentage of children for this age range with special health care needs (18.9%). The same data identified 45% of Texas CYSHCN receive care in a medical home compared to 42.3% of CYSHCN nationwide. The Joint Principles of a Patient-Centered Medical Home describe a medical home as a place CYSHCN experience health care where the provider knows them well, care is comprehensive and continuous, and families are valued partners on the care team. In FY23, MCH will lead, fund, partner, and support continued efforts to improve care coordination for CYSHCN and their families, increase the percentage of CYSHCN having a medical home, and help families establish emergency health care plans (if needed).

 

The CYSHCN Caregiver and Young Adult Outreach Surveys, two components of the MCH needs assessment activities, monitor the state’s ongoing progress toward meeting CYSHCN national and state performance measures. The surveys evaluate families’ and young adults’ experiences with accessing health care, care coordination, and emergency preparedness planning. In FY23, MCH will distribute the FY21 Outreach Survey findings through agency-developed fact sheets, presentations, and a comprehensive report. Concurrently, and in partnership with family-serving organizations, MCH will develop and distribute the FY23 Outreach Survey in both English and Spanish. MCH anticipates gaining a better understanding of the barriers families encounter when trying to find CYSHCN-specific care and how disparities and community level drivers can hinder access. The results will inform future Texas MCH initiatives.

The statewide Medical Home Learning Collaborative (MHLC) will continue meeting quarterly through webinar to promote patient-centered medical home principles. The MHLC brings together health care professionals, case managers, community organizations, parents, and other interested stakeholders to increase knowledge, exchange resources, and advance best and evidence-based practice implementation. In FY23, MCH will lead meetings centered on specific topics presented by a subject matter expert. To measure quality, MCH will distribute a post-meeting survey to collect input for future presentations and assess:

• Whether knowledge of the featured topic increased;
• If educational needs were met;
• Whether the resources shared were helpful; and
• If participants plan to apply learnings, and if so, in what ways.

MCH will update MHLC members through monthly communications and share new resources, recent publications, upcoming events, and learning opportunities to advance the medical home model.

To improve understanding of the medical home, MCH will continue disseminating the following informational resources in both English and Spanish:

• “Every Child Deserves a Medical Home: A Guide for Families”;
• “What is a Medical Home? A Guide for Providers”; and
• A CSHCN Services Program’s health care benefit fact sheet.

All materials are downloadable through the Texas Department of State Health Services (DSHS) website. To expand reach, MCH will exhibit at multiple events to disseminate health and medical home resources including the health care benefit fact sheet. Through Granicus (a government customer experience management software platform), MCH will create email messages pertinent to medical home and track the number of subscribers, opens, and clicks to evaluate reach efforts.

The CSHCN Services Program’s health care benefit, partially funded by MCH, pays for medical care, family support services, and related services not covered by Medicaid, Children’s Health Insurance Plan, private insurance, or another party. These services are provided to eligible CYSHCN up to age 21 and people of any age with Cystic Fibrosis. The program provides services that honor and respect families’ cultural beliefs, traditions, and values. In FY23, MCH will monitor the number of CYSHCN who are provided health care benefits, removed from the waitlist, and/or receive time-limited services. MCH will also meet monthly with Texas Health and Human Services Commission (HHSC) staff who administer the program to strengthen collaboration and stay informed on current activities.

The Texas Institute for Child and Family Wellbeing (the Institute) at the University of Texas is developing an MCH-funded curriculum based on best practices to improve and standardize case management services delivery. The training consists of nine chapters:

• Trauma-Informed, Strengths-Based, and Family-Centered Care;
• Disparities and Cultural Humility;
• Data, Documentation, and Quality Assurance;
• Practice Tools;
• Disaster Planning;
• Care Coordination and Medical Home;
• Transition to Adulthood;
• Care for the Caregivers and Siblings; and
• Self-Care and Safety for Case Managers.

In FY23, the Institute will:

• Conduct trainings, provide technical assistance, and offer follow-up support for participating case managers on practice model implementation;
• Collect and analyze data from case managers and other sources to understand perceptions of the training’s effectiveness;
• Measure case managers’ concept retention;
• Evaluate the practice model, including conducting family and staff qualitative interviews;
• Develop tools to assess how precisely case managers follow the model in practice; and

• Utilize administrative data to show outcomes captured in state data systems.

MCH will continue to fund community-based organizations and Public Health Region (PHR) case management staff to assist CYSHCN and their families learn about medical home services, access primary care providers, develop emergency preparedness plans, and connect with needed services. Community-based contractors provide case management (CM) and/or family supports and community resources (FSCR) in each PHR. All CM and FSCR contractors will continue meeting quarterly with their PHR case management supervisor to increase collaboration and prevent service duplication.

MCH’s 8 CM contractors and PHR case management staff work 1:1 with CYSHCN and their families to conduct an initial intake evaluation including a family needs assessment, develop an individual service plan, and monitor progress. To facilitate CYSHCN’s access to a medical home and support care coordination in FY23, CM contractors will:

• Connect families with primary and specialty providers, mental and behavioral health services, dental care, medical transportation, and other health-related services;
• Help families find and apply for affordable health coverage to pay for care; and
• Assist families with developing preparedness plans and registering with their community emergency responders.

MCH’s 14 FSCR contractors provide gap-filling services for CYSHCN and their families that vary by individual contractor based on community needs. In FY23, FSCR contractors will:

• Host educational events for families to learn about the importance of a medical home, health and wellness, and self-care;
• Partner with first responders to host at least two emergency preparedness events for CYSHCN and their families; and
• Educate first responders on evidence-informed practices to support people with disabilities.

MCH will continue requiring CM and FSCR contractors to provide culturally responsive medical home services that encompass multilingual translation and interpretation. To reduce health disparities and advance health outcomes for families, CM and FSCR contractors will conduct 2 outreach activities, at minimum, during each quarter of FY23 to underserved populations. Examples of qualifying activities include:

• Presenting and/or exhibiting at an event in rural or other underserved areas;
• Collaborating with organizations working to improve outcomes for underserved populations; and
• Serving on a community board or group that addresses issues impacting underserved populations.

 

Each fall, MCH hosts a training to provide CM and FSCR contractors technical assistance on the Texas Title V program and how their activities contribute to advances for CYSHCN and their families. MCH will hold the FY23 event with the following objectives:

 

• Hear parent stories highlighting help received from contractor services and how the relationship benefited their CYSHCN and family;
• Offer learning sessions on topics contractors request to support their professional development;
• Give contractors opportunities to network with each other and exchange program ideas for replication; and
• Provide MCH Title V CSHCN performance measure technical assistance and review contract reporting requirements.

 

Additionally, MCH will convene contractors quarterly through webinar to provide program updates, facilitate discussion to address systemic challenges families experience, and share ideas for solutions.

 

The federal Health Resources and Services Administration (HRSA)-funded Mountain States Regional Genetics Network (MSRGN) is 1 of 7 regional networks in the nation helping people with heritable disorders and their families access care and appropriate genetic expertise. To improve availability of services and quality care for children with genetic disorders and their families, the MSRGN Texas team will identify clinics to serve as “genetic champions” to educate, equip, and empower pediatric and primary care providers to better serve children, youth, and young adults who are, or may be, impacted by a genetic condition. The Texas team will also build partnerships to improve genetic counselor and geneticist connections through outreach and resource sharing to families, clinicians, and other professionals serving CYSHCN. MCH will aid these efforts by:

• Supporting MSRGN Texas team activities to identify needs, gaps, and opportunities to improve awareness of the state’s genetic services;
• Participating in monthly meetings, network webinars, and the annual MSRGN Genetics Summit; and
• Serving on the Hope for Families subcommittee to improve provider messaging and the experience of families when learning their child has a serious illness or disability.

Texas Health Steps’ (THSteps) award-winning online provider education program offers free continuing medical education courses for primary care providers and other health professionals. The modules include updated clinical, regulatory, and best-practice guidelines for a range of preventive health, oral health, mental health, and case management topics. In FY23, MCH will provide subject matter expertise, as requested, on course development and share new and updated modules through the MHLC and other forums. To monitor provider participation, MCH will track specific modules’ completion related to medical home:

• Building a Comprehensive and Effective Medical Home;
• First Dental Home;
• Culturally Effective Health Care;
• Advancing Health Equity in Texas Through Culturally Responsive Care;
• Recognizing, Reporting, and Preventing Child Abuse;
• Transition Services for CSHCN;
• Adolescent Health Screening; and
• Autism Spectrum Disorder: Screening, Diagnosis, and Management.

The Texas Primary Care Consortium (TPCC) strives to address health disparities, lack of health care access, and promotes the medical home model in Texas. The annual TPCC Summit is a space for dialogue and collective learning among professionals from diverse backgrounds to improve the health of Texans through person-centered, accessible, coordinated, and equitable primary care. To support the TPCC in FY23, MCH will:

• Serve on the annual summit steering committee and attend monthly planning meetings;
• Collaborate on efforts to improve health care access and quality in Texas; and
• Work with the TPCC to build and improve strategic partnerships for shared and sustainable impact.

The Complex Care Redesign Partners (CCRP) project builds on the Collaborative Improvement and Innovation Network (CoIIN) for Children with Medical Complexity (CMC) successes that concluded in FY22. The new 2-year CCRP initiative brings together Texas’ CMC CoIIN team partners to test a new care model to improve the health, well-being, and quality of life for CMC and their families. To achieve better outcomes for the target population, minimize costs, and increase provider efficiency and satisfaction, the project wants to:

• Empower primary caregivers as equal partners in care plan development;

• Bring the child, family, and child’s entire care team together for a twice-yearly “Whole Child Visit” to develop a shared care plan centered on what matters most to the family;
• Test an alternative payment model that integrates multiple service providers (e.g., specialists, home health) in a single visit; and
• Collect and analyze data from multiple sources including outcome measures developed by the clinic’s Family Workgroup and surveys of care team well-being.

In FY23, the Dell Children’s Medical Center’s Children’s Comprehensive Care Clinic, guided by a Family Workgroup, will build on the CMC CoIIN’s accomplishments and remain Texas’ innovation site. As an active partner, MCH will:

• Serve on the project’s core team;
• Promote meaningful family engagement in all project initiatives;
• Provide ongoing project activity support, as requested;
• Contribute to the development of research papers, presentations, and other materials to disseminate findings; and
• Identify opportunities to scale project learning.

NPM 12: Percent of children with and without special health care needs who received services necessary to transition to adult health care.

Findings of the 2018-2019 NSCH identified 18.6% of CYSHCN in Texas ages 12 through 17 received services necessary to transition to adult health care. This is a significant improvement from the 2016-2017 NSCH survey results (8.5%) as Texas is beginning to approach the national average of 22.9%. In the 2019 Title V Caregiver Outreach Survey, 76% of respondents with transition-aged youth 12-17 did not feel prepared for their child’s transition to adulthood. Respondents most often reported they had not prepared for their child’s transition in multiple areas including health care, postsecondary education, and addressing legal needs. Texas will continue raising awareness and conducting educational activities for families and professionals to increase the number of CYSHCN who receive services necessary to transition to adult health care.

MCH will disseminate transition to adulthood-specific findings from the FY21 CYSHCN Caregiver and Young Adult Outreach Survey to stakeholders and the public through an agency-developed comprehensive report, data factsheet, and presentations. To identify service gaps, MCH will develop the FY23 Outreach Survey to assess respondents' experiences with transition planning including the move from pediatric to adult-based care. MCH seeks to better understand the barriers CYSHCN and their families experience transitioning to adulthood and if community drivers and disparities compound these challenges. MCH will partner with stakeholders to distribute the survey and the findings will guide MCH efforts to improve transition outcomes.

The Transition to Adulthood Learning Collaborative (TALC) is a statewide forum for sharing:

• Transition planning strategies;
• Knowledge, resources, and upcoming events;
• New publications and funding opportunities; and
• Updates on state and national initiatives.

TALC brings diverse partners together including parents, clinicians, educators, case managers, and community-based organizations through quarterly webinars. MCH will continue leading the TALC meetings to advance knowledge in all transition areas: health care, higher education, employment, and independent living. In FY23, each meeting will feature an expert on a transition-related topic. To improve meeting quality, MCH will survey attendees to gather input on future meeting ideas and assess:

• If knowledge of the presentation topic and available resources increased;
• Whether participants’ educational needs were met;
• If the resources shared were helpful; and
• How participants plan to apply learnings.

In FY23, MCH will make improvements to the post-meeting survey questions and measure changes in knowledge.

MCH provides subject matter expertise and support to numerous state partners by offering presentations to increase health care transition knowledge and understanding. Participants include families, case managers, health care providers, and other professionals. MCH will work with self-advocates, parents, educators, and other professionals to develop and deliver presentations to increase understanding of:

• The importance of intentional health care transition planning;
• How families and school teams can partner to incorporate health care transition planning into Individual Education Plans;
• Available tools and resources to help families prepare for transition; and
• Steps families can take to support their child’s good life now and in the future.

 

MCH will continue distributing informational resources in both English and Spanish to advance understanding of health care transition:

• “What is Health Care Transition? A guide for families”;
• “What is Transition? A guide for health care providers and other professionals”; and
• Got Transition’s publications including the Readiness Assessment for Students and the corresponding Sample Goals for the Individual Education Plan.

The materials are downloadable through the Texas DSHS website. To expand reach, MCH will exhibit at multiple events, collaborate with the Texas DSHS’ Communications team to develop social media posts related to health care transition, and track:

• Impressions and reach;
• Engagement, likes, and reactions;
• Retweets and shares; and
• Saves and comments.

Through the Granicus platform, MCH will create email messages pertinent to health care transition and track the number of subscribers, opens, and clicks to measure reach efforts.

Community-based organizations and PHR case management staff funded through MCH will continue assisting CYSHCN and their families to learn about and actively plan for the transition to adulthood. MCH will continue requiring CM and FSCR contractors work to improve families’ understanding of health care transition and increase intentional planning for the move to adult-based care.

In FY23, to improve health care transition outcomes, CM contractors will:

• Administer health care transition readiness assessments for all youth, ages 12 and older, and their parents;
• Promote health care self-management;
• Educate families on pediatric practice and children’s hospitals’ age limit policies;
• Develop and keep updated an individualized transition plan based on the priorities determined by the youth and family; and
• Provide linkages to adult services.

FSCR contractors will:

• Collaborate with youth, families, and community partners to plan and host in-person and virtual transition fairs and workshops;
• Host and/or co-host education events for youth, families, and professionals to learn about transitioning to adult health care, higher education, employment, and independent living;
• Partner with state and local organizations, such as the Texas Workforce Commission, to offer vocational rehabilitation services training to engage a wider audience and engage families in rural areas; and
• Share information on opportunities to learn more about transitioning to adulthood, including the Texas Parent to Parent’s (TxP2P) Pathways to Adulthood program.

MCH expects the number of CYSHCN and their families who learn about and prepare for the transition to adult-based care to grow because of PHR staff and contractor efforts.

The annual Chronic Illness and Disability Conference: Transition from Pediatric to Adult-based Care scheduled for October 2023 will bring together national and international thought leaders to share expertise on how to better facilitate successful transitions from pediatric to adult health care. MCH will serve on the conference’s advisory group to contribute ideas for the 2023 and 2024 conferences. MCH will fund scholarships through TxP2P partnership for youth, young adults, and parents to attend. MCH expects results from the conference evaluations to indicate increased provider knowledge on how to implement practice changes to further health care transition planning.

The Health Care Transition in Schools initiative brings several state Title V staff and Got Transition team members together to advance health care transition planning in partnership with school teams. MCH will attend meetings to strategize and exchange resources on incorporating health into school transition planning. MCH will identify new ways to expand health care transition planning in school and engage more state CYSHCN programs.

SPM 1: Percent of CYSHCN and their families who participate in social or recreational activities with families who have children with or without disabilities.

The Americans with Disabilities Act (ADA), signed into law in 1990, conveys America’s commitment to confirming people with disabilities are fully integrated and included in all aspects of daily life. All families and children benefit from a sense of belonging in their communities. For CYSHCN, inclusion provides equal access to community activities and offers benefits of friendships, peer models, and teaching others to accept differences.

 

According to the 2019 Title V Parental Outreach Survey, 55% of respondents reported feeling isolated because of their child’s disability and a third did not feel a sense of belonging in their community. The same data showed that four out of five CYSHCN did not have access to inclusive day care or afterschool programs and over 70% did not have access to inclusive preschool. Additionally, 26.2% of respondents reported needing respite care and not receiving it. The top three most common barriers to receiving respite care were: finances, lack of providers, and not knowing about respite care.

 

In FY23, MCH will disseminate results of the FY21 CYSHCN Caregiver and Young Adult Outreach Survey specific to community inclusion through an agency report, factsheet, and presentations. To assess whether families experience a sense of belonging in their communities and/or isolation, MCH will develop and distribute the FY23 Outreach Survey in partnership with stakeholders. MCH aims to better understand inclusion barriers and whether disparities and community level drivers are contributing factors. To support family and young adult acceptance in their communities, MCH will use the findings to improve inclusion pathways.

 

In FY23, MCH plans to elevate family voice and lived experience by launching a Family Engagement Learning Collaborative (FELC). To increase the family perspective in all MCH programs, awareness of the importance of meaningful family engagement at all levels, a family-centered approach to services, and develop family leaders, the FELC will:

• Provide education and leadership development opportunities to empower families to be active participants in the planning, development, and evaluation of MCH materials, programs, and policies;
• Foster an environment built on mutual trust and respect to improve communication and information sharing among families, community stakeholders, and state agencies;
• Involve families who represent the diversity of the MCH population from both rural and urban communities to address health disparities, intersectionality with community level drivers and partner to improve health outcomes; and
• Collaborate closely with the state’s Title V Family Delegate to keep informed of national Family Voices activities and implement evidence-based practices into MCH’s family engagement efforts.

 

MCH created resources in English and Spanish to promote acceptance of CYSHCN and their families in all aspects of community life:

• “A Guide to Community Inclusion” brochure to increase awareness of the benefits of inclusion, what inclusion looks like, and advance inclusive practices; and
• “Communicating with and About People with Disabilities” with guidelines for using language that is accurate, neutral, and objective.

Texas MCH will track distribution of materials through its website and at in-person events along with a list of the CM and FSCR contractors who partner with families throughout the state to promote inclusion. To message the public on the importance of belonging and acceptance, MCH will utilize the DSHS social media platform and email distribution lists.

 

In FY21, MCH led development of a training module to increase community health workers’ (CHW) knowledge on the CYSHCN population and the needs of families. MCH will promote this training to educate CHWs throughout the state on ways to encourage the inclusion of people with disabilities in the community. To evaluate the training’s effectiveness and generate ideas to meet additional educational needs, CHWs will have the opportunity to complete a post-training survey.

MCH will continue to fund community-based organizations and PHR case management staff to support CYSHCN and their families’ inclusion in community life, decrease isolation feelings, and strengthen the family unit. Major activities include linking families to resources to meet basic needs, facilitating parent to parent networking, hosting social and recreational activities, and offering respite for parents and caregivers. In FY23, CM contractors will help CYSHCN obtain wheelchairs and other durable medical equipment and provide linkages to inclusive events to facilitate increased community access. FSCR contractors will advance inclusion by:

• Collaborating with local organizations to host social and recreational events that are welcoming to CYSHCN and their families;
• Providing respite, support parent and sibling groups, and linkages to basic needs resources to strengthen the family safety net;
• Offering parent networking and leadership development opportunities; and
• Giving families free vouchers to visit museums, zoos, concerts, and other inclusive recreational activities.

To improve identification of CYSHCN and their families who may not be receiving needed services and supports, contractors must conduct direct outreach to minority populations at least twice per quarter. MCH anticipates these contractor efforts will strengthen community partnerships and help underserved CYSHCN and their families learn about and access needed services.

The CM and FSCR Family Experience Surveys offer families the opportunity to provide anonymous feedback on contractor services received. Both the CM and FSCR surveys assess if families:

• Feel supported when they have questions or concerns about their child;
• Feel included in decision-making about their child’s care and respected for their culture and traditions;
• Encounter barriers to receiving agency services; and
• Receive help to connect with other parents and links to needed resources and services for their child’s care.

The FY23 CM survey will evaluate if families feel the contractor provided:

• Help to create an individual service plan and timely follow-up;
• Assistance to develop an emergency preparedness plan; and
• Resources to support community inclusion.

The FY23 FSCR survey will assess if families feel the contractor offered:

• Opportunities to feel included in the community;
• Helpful information; and
• Quality services overall.

To support contractor efforts to improve service delivery and address programmatic issues noted in the surveys, MCH will:

• Analyze and share findings with each individual contractor on a quarterly basis;
• Provide technical assistance to help contractors better meet the needs of families; and
• Identify areas to improve the survey questions and response rate to better capture what matters to families.

MCH expects to see contractor programming and service delivery improvements based on the survey findings.

During FY23, Texas MCH will partner with the following statewide committees in varying capacities to identify needs, gaps, and opportunities to strengthen systems to advance community inclusion:

• Texas Council for Developmental Disabilities;

Policy Council for Children and Families;

• Community Resources and Coordination Groups Statewide Workgroup; and
• OLE! (Outdoor Learning Environment) Texas.