NPM 11: NPM 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, children and youth with special health care needs (CYSHCN) made up over 17% of children under the age of 18 in Texas. In the 2019 Title V Parental Outreach Survey sent out by the CSHCN Systems Development Group (CSHCN SDG), respondents reported that 61.8% of parents and guardians organized their child’s care themselves, suggesting that a significant portion of this population was not receiving comprehensive care coordination from health care providers. The same data showed that more than half of respondents had a plan for a medical emergency (63.2%) and a natural or man-made disaster (53.1%). Still, a large portion of this population had not planned for emergencies.
The CSHCN SDG within the Maternal and Child Health Unit (MCH) partnered and supported multiple state and national initiatives to increase the percentage of CYSHCN families’ knowledge about the medical home model and improve care coordination in FY20. Key family-focused activities included participation in the Health Resources and Services Administration (HRSA)-funded Collaborative Improvement and Innovation Network (CoIIN) to Advance Care for Children with Medical Complexities (CMC) project and serving on state and national workgroups.
Texas participated as one of ten state teams in the 4-year CMC CoIIN, which launched in 2018, to improve the quality of life for CMC, the well-being of CMC families, and increase the cost-effectiveness of care. The Children’s Comprehensive Care Clinic at Dell Children’s Medical Center (the Clinic), a dedicated practice serving only children with medical complexity, was the site for innovation in Texas. Nearly 400 clinic patients were part of the project’s cohort. In addition to MCH and Clinic staff, the Texas team included families of children seen at the clinic, Texas Parent to Parent, practicing clinicians, Medicaid managed care organizations, the CEO of a Federally Qualified Health Center, health systems researchers, policy experts with the Dell Medical School at the University of Texas, Children’s Hospital Association of Texas, the Texas Health and Human Services Commission (HHSC) Medicaid division, and other key stakeholders.
Specific aims of the Texas CMC CoIIN Team focused on:
- Meaningful engagement and support of CMC and their families to increase shared decision-making;
- Streamlining the multitude of required annual assessments for service eligibility to eliminate redundancies and inefficiencies;
- Utilizing technology to promote a shared care plan; and
- Improving efficiencies in accessing durable medical equipment, private duty nursing, therapies, and sub-specialty care at the Clinic.
Major FY20 Texas Team CMC CoIIN accomplishments included:
- Rapidly advancing clinic operations and family support in response to the pandemic. The clinic shifted family support services to an online platform and hosted virtual town halls, both in English and Spanish, to answer COVID-19 questions and dispel misinformation. The child life specialist at the Clinic engaged siblings through virtual activities.
- Piloting the Family Engagement in Systems Assessment Tool (FESAT) at the Clinic. Findings identified the need to expand the CMC CoIIN family workgroup to better represent the diversity of the Clinic population. In response, the family workgroup developed and began implementing an action plan to increase membership of families of color.
- Conducting 1:1 interviews with Clinic families, including Spanish-speaking families, to assess experience and satisfaction with Clinic services. Family workgroup leaders administered the surveys to solicit open, honest feedback.
- Collaborating with providers to establish a streamlined, integrated interdisciplinary virtual clinic visit.
The Mountain States Regional Genetics Network (the network), a multi-state HRSA-funded collaborative, focused on helping ensure that people with heritable disorders and their families have access to genetic expertise and quality care. The Texas team included family members, Texas Parent to Parent, nurses, genetic counselors, public health professionals, the state geneticist, MCH staff, and other interested stakeholders. Primary activities to expand awareness of genetic resources in Texas included:
- Developing and distributing COVID-19 information to families with children with genetic conditions;
- Exhibiting at the Texas Pediatric Society’s (TPS) annual conference and advertising on the TPS website;
- Targeted advertising to families on Facebook; and,
- Expanding genetics content on Navigate Life Texas, a state-based website developed by and for families.
CSHCN SDG and the Executive Director of Texas Parent to Parent served on the legislatively mandated Texas Policy Council for Children and Families (Council) in fiscal year (FY)20. The Council worked to improve the coordination, quality, efficiency, and outcomes of services provided to children with disabilities and their families through Texas’ health, education, and human services systems. Most Council representatives were family members of youth and young adults with special health care needs. Legislation requires the Council to include at least one adolescent or young adult with a disability under the age of 26 receiving services from an HHSC agency. Additional members included community, faith, business, and other organizations providing services to children. The Council worked in FY20 to develop its biennial report, Recommendations for Improving Services for Children with Disabilities, for submission to the Texas Legislature and HHSC leadership in the fall of 2020. Medical home recommendations included strengthening emergency preparedness planning to ensure continued access to vital services during disasters or other large-scale events impacting families of CYSHCN; easing eligibility requirements for the state’s Medicaid Buy-In program; and creating opportunities to enhance telemedicine in response to COVID-19.
CSHCN SDG funded community-based organizations and Public Health Region (PHR) case managers throughout Texas to help CYSHCN and their families in varying ways such as improving access to services and increasing the understanding of complex CYSHCN systems. The program also funded a health care benefits program for CYSHCN which was administered through HHSC.
CSHCN SDG awarded two types of contracts to community-based organizations for a 5-year grant cycle: Case Management (CASE) and Family Support and Community Resources (FSCR). CASE contractors worked in partnership with CYSHCN and their families to assess needs, develop service plans, provide linkages to state and local resources, and coordinate care. FSCR contractors helped CYSHCN and their families by providing a wide range of services and activities in response to community needs. Services and activities included respite assistance, educational workshops, recreational and fitness programs, parent to parent networking, and crisis prevention.
A new 5-year cycle for CASE and FSCR launched in FY20. CSHCN SDG selected 13 community-based organizations to contract through a competitive application process. One organization did not have a contract with CSHCN SDG in the previous cycle. Two contractors had CASE contracts only, five contractors had FSCR contracts only, and six contractors had both contract types. After finalizing funding awards, CSHCN SDG confirmed case management services were available in all regions of the state and identified two PHRs without FSCR contractors. To address the gaps, CSHCN SDG contacted health departments and hospital districts in both areas to gauge interest and solicit additional contractors. Subsequently, CSHCN SDG awarded contracts to three local health departments to ensure FSCR services would be provided in all eight PHRs. FSCR contractors now provide services in 136 of the 254 counties in Texas.
MCH also funded PHRs to provide case management services to families of CYSHCN, ensuring services were available in every county. PHR staff, in addition to the community-based CASE contractors, coordinated care for CYSHCN and their families. In FY20, CSHCN SDG contractors assisted 1,004 clients and PHR staff assisted 1,849 clients with comprehensive case management services.
In the first quarter of FY20, CSHCN SDG developed separate FSCR and CASE family experience surveys to better assess each contractor program. Previously, the survey was the same for both contracts. The new FSCR family experience survey gauged contractor responsiveness to family inquiries, respect for culture and traditions, quality of linkages to needed resources, facilitation of parent-to-parent connections, and support in helping families feel included in the community. Additionally, the CASE survey measured family satisfaction with service plan development, emergency preparedness planning, timeliness of follow-up, and shared decision-making for their child.
- Accessible, family-centered, comprehensive services (92%)
- Coordinated services (88%)
- Culturally effective services (93%)
- Continuous services and overall satisfaction (95%)
To increase the survey response rate from FY19, CSHCN SDG informed contractors of return rates, satisfaction scores, and respondent comments quarterly in FY20. COVID-19 prevented CSHCN SDG from sending contractors additional printed surveys to distribute to families. Contractors who no longer had printed surveys had to revise ways to distribute surveys via text, email, and Quick Response (QR) codes. Many families lacked access to the Internet and technology which had a negative impact on the number of responses to the survey.
COVID-19 significantly impacted CASE and FSCR contractors in their ability to assist families. Contractors had to close offices temporarily and limit in-person interactions while transitioning to virtual platforms to connect with families and coordinate care. Providing services remotely presented challenges and unexpected opportunities. Contractors stated it was hard to follow through with goals and planning because families repeatedly canceled appointments due to additional challenges with COVID-19. Families lacked technology capabilities, which made it difficult for contractors to get documents electronically signed. To assist with these new challenges, CSHCN SDG hosted bi-weekly COVID-19 huddles virtually for contractors to network, share ideas, and find solutions to the issues they faced. Web-based events provided the opportunity for contractors to reach a wider audience. More information on emergency funds and changes due to COVID-19 can be found under SPM 1.
According to World Atlas, Texas is the leading state in natural disaster frequency. Floods, wildfires, tornados, hurricanes, hailstorms, sinkholes, erosion, and drought all occur in Texas. CYSHCN and their families are particularly vulnerable and therefore emergency preparedness planning is a priority of CSHCN SDG. Community-based contractors are required to help families plan for emergencies.
In FY20, CSHCN SDG contractors helped 1,183 clients with emergency preparedness planning. Assistance included developing or updating current plans, organizing medical information electronically, and distributing emergency kits. The kits included a flashlight, fire extinguisher, and first aid supplies. Due to COVID-19, contractors adapted emergency preparedness information to include shelter-in-place information, which was previously not included, and plan to incorporate this information into future training programs. Contractors also helped families register with the State of Texas Emergency Assistance Registry (STEAR) to alert local preparedness planners and first responders of potential needs for additional assistance during an emergency. The FY20 CASE family experience survey results showed that of the 79% of respondents assisted with an emergency plan, 100% felt better prepared for an emergency or disaster after CASE helped establish a plan.
As COVID-19 began impacting communities, contractors also educated families on social distancing and mask wearing protocols. Contractors shared information about testing sites and encouraged families to follow the Centers for Disease Control and Prevention’s (CDC) recommendations, referred communities to the DSHS COVID-19 website, and monitored local health department updates.
CSHCN SDG contractors promoted family education on medical home services by hosting conferences, workshops, and camps for youth with chronic health conditions throughout the year. Several contractors held in-person conferences in the first half of FY20. Due to the pandemic, spring and summer conferences changed to online platforms and one contractor hosted a virtual camp. Although these events were hosted online, families had opportunities to engage with health and wellness professionals and learn about available community resources. Featured topics included COVID-19 updates, mental health services, healthy cooking, personal hygiene, puberty, first aid training, domestic violence awareness, and an overview of the CSHCN Services Program administered by the Texas Health and Human Services Commission (HHSC).
Specific CSHCN SDG contractor-led activities are described below.
- Texas Parent to Parent, the statewide parent network, held two in-person regional parent conferences, prior to the pandemic, to empower parents in managing the issues and challenges of caring for CYSHCN. These regional conferences were a collaboration between Texas Parent to Parent, local parent groups, school districts, Education Service Centers, and others. A total of 80 parents, 18 professionals, and 1 self-advocate attended these events, which included 45 breakout sessions and 45 exhibits. Presentation topics covered children’s mental health and the dangers of restraint and seclusion. Due to the pandemic, Texas Parent to Parent canceled its annual statewide conference and hosted a summer series of virtual workshops instead. A total of 320 parents and 48 professionals attended the series that included sessions on mental health and emergency preparedness amid the pandemic.
- Any Baby Can of San Antonio held numerous in-person events prior to the pandemic with 303 attendees participating. The contractor offered bi-weekly adaptive fitness classes; a workshop to help parents navigate the pre-teen, teen, and young adult years; and a 4-part series on autism, behavior supports, and reinforcements with visual strategies.
- Paso del Norte Child Development Center, located in El Paso, continued to offer a Leadership Academy for Families. The academy is a seven-week program provided in English and Spanish to parents, family members, and caregivers of CYSCHN as well as community members. Topics covered in the course included a history of disability, the special education process in Texas, advocacy, emergency preparedness, transitioning to adulthood, social services, assistive technology, and family dynamics. In FY20 Paso del Norte offered an academy specific to families whose children have autism and attention-deficit/hyperactivity disorder (ADHD). Due to COVID-19, classes went from in-person to virtual and each topic was split into 2 sessions.
The CSHCN Services Program (CSHCN SP) administered by HHSC received Title V funds to provide health care benefits to children younger than age 21 who have special health care needs and any individual with cystic fibrosis. In FY20 1,574 eligible clients received a benefit, of which 1,442 did not have any other health insurance coverage. There were 547 clients on the waitlist in FY20. There were 407 clients pulled from the waitlist that received a CSHCN SP benefit throughout the year. Beginning in FY20, CSHCN SDG met monthly with the HHSC CSHCN SP to stay informed on changes and activities in the health care benefits program.
CSHCN SDG facilitated the Medical Home Learning Collaborative (MHLC), which meets virtually every quarter to increase knowledge and share best practices on medical home. In FY20 the MHLC facilitated presentations on person-centered planning, trauma-informed care for CYSHCN, assessing family-centeredness and family engagement, and managing autism in the medical home.
In 2018, CSHCN SDG surveyed certified community health workers (CHWs) in Texas to identify gaps in knowledge regarding services and supports available to families of CYSHCN. Results showed that CHWs were not informed on available resources or the unique needs and challenges of CYSHCN families. In FY20, CSHCN SDG developed an introductory training module to expand the capacity of CHWs to assist families of CYSHCN. The training aimed to ensure that CHWs will have greater knowledge and understanding of:
- Challenges and needs of CYSHCN and their families;
- Resources on health care funding options for CYSHCN in Texas; and
- How to advance community inclusion of CYSHCN and their families.
In FY20, CSHCN SDG distributed “What is a Medical Home”, a brochure CSHCN SDG designed for health care providers and other professionals working with CYSHCN and their families. Due to the pandemic, distribution was down from previous years as events were canceled and staff, working remotely, were unable to mail resources to contractors. All materials remained available to download from the MCH CSHCN’s website.
In FY20, MCH funded an academic institution and community-based organizations throughout the state to improve the quality of case management services and expand the knowledge base of providers on medical home.
CSHCN SDG contracted with the Texas Institute of Family and Child Wellbeing (TXIFCW) at the University of Texas School of Social Work to develop a practice model to ensure provision of high-quality, family-centered, and culturally sensitive case management services for CYSHCN and their families. The National Care Coordination Standards for CYSHCN served as a guiding foundation for the model. The project, launched in the beginning of FY20, will be implemented in three phases, each lasting approximately one year:
- Phase I: Conduct an environmental scan and needs assessment
- Phase II: Design the practice model and train case managers
- Phase III: Continue technical assistance and program evaluation
As part of Phase 1, TXIFCW conducted an environmental scan to identify established standards and quality measures and examine how CYSHCN case management services are currently being implemented across Texas. For the needs assessment, TXIFCW collaborated with CSHCN SDG and MCH Epidemiology to develop and conduct stakeholder interviews to identify strengths and gaps in current case management practice. CSHCN SDG community-based contractors and PHR staff recruited stakeholders from all regions. The interviews included caregivers receiving CYSHCN case management services, case managers working with CYSHCN and their families, case management supervisors, DSHS staff, and community-based contractors. Interviews were initially planned as in-person focus groups but shifted to a remote format due to COVID-19. CSHCN SDG added questions to the interviews and surveys to ask about how COVID-19 affected services and supports for CYSHCN. TXIFCW also recruited participants for a Practice Model Advisory Group through CSHCN SDG community-based contractors and PHRs. TXIFCW plans to establish the group in FY21 to solicit input and expertise from CYSHCN case management staff, stakeholders, and families on the development of the case management practice model.
Throughout FY20, CSHCN SDG contractors provided education to providers on the importance of a medical home for CYSHCN, the medical impact on the daily lives of CYSHCN and their families, and on-site clinical care learning. Specific details of contractor activities are below.
- Texas Parent to Parent continued offering their Medical Education (MEd) program in FY20. The program was developed to give medical students and residents a deeper understanding of the experience of families who have a child with chronic health care needs. In FY20, 76 students and 107 residents participated in the MEd program. Participants attended a home visit, a school visit, and a communication skills interview. Due to the pandemic, fewer students participated than in previous years, in-person home visits were suspended, and the program was not offered in the 4th quarter.
- The CHOSeN Clinic, located in Houston, provided students the opportunity to visually learn about the primary care management of children and young adults with multiple disabilities in the medical home setting. The clinic offered the in-person clinical experience to social work interns, psychology interns, dental residents, and Leadership Education in Neurodevelopmental Disabilities (LEND) fellows. The clinic provided the learning experience to 24 full residency interns; 8 Internal Medicine and Pediatrics providers comprised of Fellows, residents and practicing physicians; 1 pediatric Genetics intern; 3 Child Neurology interns; 6 dental residents; and 30 LEND Fellows. Each day, 2-3 students participated in the program to obtain hands-on experience on how to manage care of the CSHCN population.
The Texas Primary Care Consortium Annual Summit, a partnership between the Texas Health Institute and the Texas Medical Home Initiative, included presentations on primary care, building a medical home, population health, meeting the needs of underserved communities, and more. CSHCN SDG served on the Steering Committee. In FY20, the Steering Committee made the decision to postpone the conference due to COVID-19.
CSHCN SDG promoted Texas Health Steps’ Online Provider Education (THS-OPE) modules on medical home. THS-OPE’s award-winning online program offers free continuing education courses for primary care providers and other health professionals (https://www.txhealthsteps.com/). In FY20, 509 individuals completed “Building a Comprehensive and Effective Medical Home”; 923 individuals completed “First Dental Home”; and 3,608 providers completed “Culturally Effective Health Care”.
- ADHD: Screening, Diagnosis, and Management
- Autism Spectrum Disorder: Screening, Diagnosis, and Management
- Texas Medicaid Services for Children
CSHCN SDG attended the quarterly STAR Kids Advisory Committee meetings to stay informed on developments in Texas’ Medicaid managed care program for children with disabilities and special health care needs. The legislatively mandated STAR Kids program provides services for children with disabilities who have Medicaid coverage. The STAR Kids program requires a health home, care management, and comprehensive coordination of acute care and long-term service benefits. Several members of the CMC CoIIN team served on the STAR Kids Advisory Committee.
CSHCN SDG attended statewide meetings promoting primary and preventative health care. The Texas Pediatric Society is a professional nonprofit organization of physicians who care for children and Texas medical school students. The Texas Pediatric Society Annual Meeting was held in October 2019, where CSHCN SDG exhibited.
CSHCN SDG participated in the State Developmental Screening Workgroup (DSW). A goal of DSW for FY20 was to identify gaps in stakeholders represented in the group. Membership of the DSW expanded to include Special Supplemental Nutrition Program for Women, Infants, and Children; a Family Representative from Texas Parent to Parent; Easter Seals of Rio Grande Valley; Paso del Norte Children’s Development Center; United Way of San Antonio & Bexar County; United Way for Greater Austin; Help Me Grow North Texas; and North Texas Area United Way. In FY20, the DSW:
- Explored opportunities for creating a statewide data system to house screening data and allow providers access to results;
- Conducted a statewide crosswalk of developmental screening and monitoring initiatives for project alignment and collaboration opportunities; and
- Agreed to support the state of Texas application to the Act Early Response, a COVID-19 project funded by the CDC and the Association of University Centers on Disabilities.
Performance Analysis: Increasing awareness and access to a medical home remained CSHCN SDG priorities. The MHLC, CMC CoIIN, Texas Primary Care Consortium, and other major state initiatives continued to help improve recognition and implementation of the medical home model. For the percentage of CYSHCN and their families who are provided education and support about receiving care within a medical home, the FY20 data point was 2,740 which is below the baseline established in FY15 (5,754). MCH will continue to identify opportunities through our partners and findings from the CYSHCN Outreach Survey. CSHCN SDG met and surpassed the goal to increase the percentage of providers of CYSHCN who are provided education and support on medical home. In FY20, 509 providers participated in the THS-OPE’s medical home module, which is much higher than the baseline established in FY15 (313).
Challenges/ Opportunities: Limited staff capacity, constraints on families’ challenges with sustainability, and the pandemic impacted collaboration with medical home initiatives statewide. MCH continues strategizing to increase involvement of clinical stakeholders with varying strengths, needs, interests, and expertise to expand supports for CYSHCN and their families. There is a significant opportunity to educate clinicians and other providers about supporting CYSHCN families within the medical home. The continuation of FY20 projects into FY21 will allow MCH to target specific health care professionals, such as case managers and CHWs. The STAR Kids Medicaid managed care program for CYSHCN requirements for improved care coordination.
NPM 12: Percent of children with and without special health care needs who received services necessary to transition to adult health care.
According to the 2018-2019 NSCH, 18.6% of CYSHCN in Texas ages 12 through 17 received the services necessary to transition to adult health care. This is a significant improvement from the 2016-2017 NSCH survey (8.5%) and beginning to approach the national average of 22.9%. In the 2019 Title V Parental Outreach Survey, 76% of respondents with transition-aged youth 12 through 17 did not feel prepared for their child’s transition to adulthood. Texas continued 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.
The CSHCN SDG partnered on state and national initiatives in FY20 to increase the percentage of CYSHCN and their families knowledgeable about health care transition. Primary efforts focused on families included participating in the Big 5 States and the Policy Council for Children and Families.
In FY19, Texas established the Big 5 State Learning Collaborative with their counterparts in California, Florida, Illinois, and New York. Before the pandemic halted travel in FY20, the Title V CSHCN Director, the Title V MCH Director, and the MCH Unit Director met with Learning Collaborative representatives from other states in Albany, New York. During the meeting, the Learning Collaborative identified the need to collectively address challenges and barriers related to transition to adult health care that children with special needs experienced in large states.
CSHCN SDG and the Executive Director of Texas Parent to Parent served on the legislatively mandated Policy Council for Children and Families (Council). The Council works to improve the coordination, quality, efficiency, and outcomes of services provided to children with disabilities and their families through Texas’ health, education, and human services systems. The majority of Council representatives are family members of youth and young adults with special health care needs. Additional members included community, faith, business, and other organizations serving children. The Council worked to develop recommendations for its biennial report to HHSC leadership and the 87th Texas Legislature for submission in the fall of 2021.
CSHCN SDG required CASE contractors to complete transition readiness assessments for all clients older than age 12. Case managers worked with families to identify and plan strategies for achieving transition goals related to adult health care, education, employment, independent living, and financial needs. In FY20, CSHCN SDG contractors provided 1,465 transition readiness services for CYSHCN.
MCH also funded PHR staff to provide case management services to families of CYSHCN through a statewide network of regional offices, ensuring services are available in every county. PHR staff conducted 860 encounters with clients to provide transition resources and 887 encounters to assist with permanency planning.
- MCH funding supported Texas Parent to Parent’s Pathways to Adulthood (PTA) workshops throughout Texas which introduced parents to transition planning. The workshops highlighted all major areas of transition: medical needs, education, legal issues, long term support services, personal support networks, and creative approaches to employment and housing. In-person PTA workshops were held during the first half of FY20. Due to COVID-19, the workshops changed to virtual events for the second half of FY20. A total of 329 parents and 180 professionals (e.g. medical professionals, education professionals, social workers, and transition specialists) attended the 8 in-person and 6 virtual PTA webinars.
- Due to COVID-19, Texas Parent to Parent canceled its annual statewide conference and hosted summer series of virtual workshops attended by 320 parents and 48 professionals. Transition-related sessions, translated into Spanish, addressed special education issues during the pandemic and planning for financial needs now and in the future.
- The Heart of Central Texas Independent Living Center in Temple promoted transition readiness by partnering with local high schools, Temple College, and the Texas Workforce Commission Vocational Rehabilitation staff to plan the inaugural Temple Area Possibilities Job Fair. The fair provided career information for students with disabilities in high school or students older than age 18 participating in post high school transition programs or attending college.
- West Texas Rehabilitation Center in Abilene partnered with Parent Resource Network’s PEN Project, a parent training and information center serving Texas Parents with children and youth with disabilities, with an in-person workshop "Agents of Change: Preparing Youth with Disabilities for Transition into Adulthood.” A panel of young adults shared their personal experiences during high school and after graduation.
- Any Baby Can of Austin canceled their annual summer camp due to COVID-19. Camp Grey Dove, a virtual camp, was held instead. The camp theme was Everyday Heroes and split participants, 41 children from 21 households, into small groups based on age. Any Baby Can of Austin sent each household the materials needed to participate in camp activities. The camp included sessions on transition, emergency preparedness, COVID-19, basic first aid, and provided opportunities for inclusion. One transition-focused session, "Confidence for Heroes", targeted transition-age youth and focused on developing confidence and independent living skills needed for transitioning to adulthood.
- Any Baby Can of Austin also held an online event “Special Health Care Needs Transition Age Youth and Parents: A conversation and Virtual Resource Fair” that 41 people attended. The event featured 8 organizations, resources, and services available in the contractor’s 10-county service area. A Family Engagement Specialist from the University of Texas at Austin facilitated a panel of youth and parents. Two parents from Texas Parent to Parent participated in the panel.
MCH supported efforts to help families better prepare to transition from pediatric to adult health care by partnering with the school team and incorporating health into Individual Education Plans. The CSHCN SDG presented “Parents as Partners in Health Care Transition” to families, managed care service coordinators, transition specialists, and educators at a workshop hosted by the CSHCN SDG community-based contractor, Sharing Hands, located in Midland.
CSHCN SDG facilitated the statewide Transition to Adulthood Learning Collaborative (TALC). Members include parents, caregivers, providers, educators, social workers, representatives from community and managed care organizations, partners with academic centers, and state agency staff. TALC met quarterly to share knowledge, new resources, current initiatives, and implementation strategies to advance understanding of all aspects of transition, including moving from pediatric to adult health care. Featured meeting topics addressed planning for improved transitions to adulthood in the areas of education, employment, housing, and long-term family and community support.
In FY20, CSHCN SDG distributed “What is Health Care Transition,” a resource developed by the program in FY17. The informational brochure, available in English and Spanish, was created to help families and providers learn about health care transition and the importance of actively planning for the move to the adult system. CSHCN SDG also distributed “What is Transition” to health care providers and other professionals working with CYSHCN and their families. Due to the pandemic, distribution was down from previous years as events were canceled and staff, working remotely, were unable to mail resources to contractors. All materials remained available to download from the program’s website.
The CSHCN SDG participated as a subject matter expert for updates to the Texas Health Steps Online Provider Education module “Transition Services for Children and Youth with Special Health Care Needs.” CSHCN SDG promoted the module through its quarterly TALC meetings. CSHCN SDG also required all CASE and FSCR contractor staff who were funded by MCH to complete the course. A total of 1,146 individuals completed the module.
Prior to the start of the pandemic, CSHCN SDG gave the following presentations on health care transition:
- “Including Health in Transition Planning - Improving Outcomes for Students” at the Leander Independent School District’s Community Symposium for the district’s special educators and vocational rehabilitation staff.
- “Partnering with School Teams to Plan for Health Care Transition” for United Health Care’s transition specialists supporting the STAR Kids managed care program.
- “Time for a Check Up: Integrating Health into Transition to Improve Post-School Outcomes” and “Volunteering for Victory: Creating Opportunities for Community Engagement and Building Skills for Success for Students with High Support Needs” for transition specialists, educators, students, and families at the Texas Transition Conference.
For the first time, CSHCN SDG exhibited at the Texas School Nurse Organization’s annual conference. The event provided opportunities for networking and sharing ideas on how school nurses can advance health care transition planning with students. As a follow-up, the Texas School Nurse Organization in Education Service Center’s Region 13 invited the CSHCN SDG to present “The School Nurse: Essential in Planning for a Healthy Transition to Adulthood.”
Additional efforts in FY20 to increase understanding of the importance of planning for the transition from pediatric to adult care included:
- Exhibiting at the annual Partners in Prevention conference;
- Attending Association of University Centers on Disability meetings on health care transition;
- Attending Texas Parent to Parent’s Parent Advisory Committee meetings to guide its new Central Texas Transition Center; and
- Attending quarterly meetings of the MCH Adolescent Health Workgroup.
Performance Analysis: Efforts to promote quality transition services, training, and technical assistance opportunities for families, contractors, service coordinators, social workers, educators, and other interested stakeholders continued. The FY20 data point for the increase in percentage of CYSHCN and their families who are provided education and support about transition from pediatric to adult health care (Objective 1) is approximately 61.5% below the baseline. The data point for Objective 1 is below the baseline due to an overall decrease in the number of case management clients served by CSHCN SDG CASE contractors. The FY20 data point for tracking the increase in the percentage of pediatric and adult providers who are provided education and support on transition from pediatric to adult health care (Objective 2) is approximately 5.7% above the baseline (1,084) as 1,146 providers participated in the THS OPE module.
Challenges/Opportunities: Too few adult providers, insufficient payment for transition services, lack of understanding of the importance of planning, and provider reluctance to initiate conversations about health care transition contribute to poor outcomes for Texas youth. CSHCN SDG continues to forge strategic partnerships with educators to promote the inclusion of health care transition goals in school-based planning.
SPM 1: Percent of CYSHCN and their families who received the supports and services necessary to be included in their communities.
According to the 2019 Title V Parental Outreach Survey, 55% of respondents reported ever feeling isolated because of their child’s disability, and more than a third of respondents 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. In FY20, CSHCN SDG conducted and funded a variety of activities aimed to support the inclusion of CYSHCN and their families in Texas.
MCH led several projects aimed at removing systemic barriers to support the inclusion of CYSHCN families in community life and strategically advance family engagement. Key initiatives included developing a project to improve nutrition outcomes and reduce health disparities for CYSHCN and creating a new Family Engagement Specialist position focused on family engagement.
In FY20, MCH participated in the National Maternal and Child Health Workforce Development Center’s (MCH WDC) 2020 Cohort. The Texas MCH WDC Cohort team included MCH child health, MCH adolescent health, CSHCN SDG, a health disparity subject matter expert, family partners for youth and CYSHCN, and a representative from PHRs. The 7-month learning opportunity involved collaborating with the Center to design and implement a health transformation challenge and strengthen workforce skills. To accomplish these goals, the team decided to create a series of presentations incorporating parent/caregiver and individual/youth nutrition and healthy eating strategies, including specific strategies for CYSHCN.
CSHCN SDG and the Executive Director of Texas Parent to Parent served on the legislatively mandated Policy Council for Children and Families (the Council). The Council works to improve the coordination, quality, efficiency, and outcomes of services provided to children with disabilities and their families through Texas’ health, education, and human services systems. A majority of Council representatives are family members of youth and young adults with special health care needs. The Council worked to develop recommendations for its biennial report to HHSC leadership and the 87th Texas Legislature. Inclusion recommendations addressed unmet needs in accessing respite, mental health services, trauma-informed care, and crisis intervention services to help ensure children with disabilities grow up in families in their communities and not institutions.
In FY20, MCH began monthly professional development meetings aimed at increasing staff awareness and understanding of health disparities. The team strategized to identify ways to reduce health disparities throughout the MCH domains.
Title V leadership maximized an opportunity to advance family partnerships in all MCH population domains by creating a Family Engagement Specialist position within the Child and Adolescent Health Branch. The new role was designed to support and promote meaningful family engagement in all MCH programs to better address family needs, gaps in support, and emerging issues. Responsibilities included:
- Promoting inclusion of the family perspective in all MCH programs;
- Mobilizing partnerships with families, existing statewide parent and family support organizations, health care providers, policy makers, community stakeholders, and state agency staff to advance awareness of the importance of engaging with families at all levels;
- Assisting to establish and sustain a family-centered approach to services;
- Conducting outreach and consulting with external partners to increase family involvement; and
- Building capacity for family engagement and leadership.
Featured CSHCN SDG contractor activities that focused on inclusion are described below.
- Sharing Hands, located in Midland, partnered with local organizations to create opportunities for CYSHCN to participate in community sporting events. The contractor partnered with The Midland Soccer Association implement “TOPSoccer,” an inclusive program for youth of all abilities ages 5 through 19. Youth with disabilities were paired with a volunteer “buddy” to help get into position, focus, and follow the coach’s directions.
- Bryan’s House, located in Dallas, provided inclusive opportunities for CYSHCN and their families by connecting with the National Basketball Association (NBA). The NBA invited children with Down syndrome to be guests at a Dallas Mavericks game to raise awareness of the condition. The children received a VIP welcome on the court and met with the players. One player gave the contractor free tickets for a family of six to attend future home games.
The FSCR contractors provided respite for families. A total of 713 clients received a total of 22,124 hours of respite.
Due to COVID-19, some of the FSCR and CASE contractor activities were canceled which resulted in unused funds. Guidance from the DSHS Contract Management Section allowed contractors to divert unspent funds directly to families impacted by the pandemic. These 1-time emergency funds totaling $310,844 made it possible for families in crisis to pay for food, clothing, housing, utilities, furniture, transportation, phone, laundry, supplies for the home, medical supplies, and other basic needs. A total of 794 families received the emergency funds. Throughout the pandemic, case managers helped families access food pantries and food vouchers. Case managers also negotiated suspension of disconnection notices and fees with utility services, landlords, mortgage companies, and cell phone carriers.
The CSHCN SDG partnered on initiatives to increase the percentage of CYSHCN and their families able to access resources and services to support their active participation in community life by serving on multiple state councils.
The Title V CSHCN Director and program staff represented DSHS as voting members of the Texas Council for Developmental Disabilities (TCDD). TCDD, created by the Developmental Disabilities Assistance and Bill of Rights Act, was established to develop a comprehensive system of services and supports to help people with disabilities achieve their potential for independence. TCDD’s mission is to create change so that all people with disabilities are fully included in their communities and exercise control over their own lives. Representatives from disability organizations, University Centers for Excellence in Developmental Disabilities, and state agencies serve in governor-appointed positions together with self-advocates and family members. Quarterly meetings focused on state and federal policies and practices impacting people with disabilities.
In FY20, CSHCN SDG participated on the TCDD Project Development Committee which identifies unmet needs and makes recommendations to TCDD on grants to fund to meet those needs. The projects supported TCDD’s strategic state plan goals and addressed a variety of needs. Projects to advance opportunities for people with disabilities focused on competitive employment, higher education, health and fitness, positive behavioral interventions and supports, local advocacy networks, leadership training, strengthening communities, and cultural competence and sensitivity. CSHCN SDG participated in discussions regarding the development of TCDD’s FY22-FY26 state plan.
The Texas Early Learning Council (TELC) serves as Texas' state advisory council as required by the federal Improving Head Start for School Readiness Act of 2007. The Title V CSHCN Director was appointed to TELC in FY20. TELC utilizes its breadth of stakeholder representation to increase coordination and collaboration across state agencies and local program and service providers to improve the quality of, and access to, early childhood services across Texas. In FY20, TELC led a statewide birth-five needs assessment and strategic plan as part of Texas's Preschool Development Grant project.
The CSHCN SDG led efforts to increase the percentage of providers knowledgeable about the needs of CYSHCN families and effective ways to promote community inclusion.
FY20 began a new 5-year contract cycle for the CSHCN SDG community-based contractors. Early in FY20, CSHCN SDG hosted a 2-day in-person training for contractors to review contractual requirements, quarterly reports, state and national performance measures specific to CYSHCN, needs assessment activities, and provide technical assistance on financial reports. Contractors received travel reimbursement for transportation, lodging, and meals. The training provided participants the opportunity to network and better understand each other’s activities. Contractors learned about statewide support available to families through Texas Parent to Parent and the Sibshop facilitator trainings offered by Sharing Hands.
The feedback from post-workshop surveys was positive. Contractors reported they found the sessions informative and helpful, and especially appreciated the opportunity to connect with each other.
CSHCN SDG partnered with Texas A&M AgriLife Extension and the TCDD to develop a Childcare Inclusion Workshop series. The team designed the workshop series to provide child care providers and professionals with the knowledge and educational resources necessary to implement child care inclusion strategies for children with developmental and intellectual disabilities. The series consists of eight weekly online courses and webinars. AgriLife Extension and the TCDD plan to issue mini-credentials to those who complete the workshop.
Outdoor Learning Environment Texas is a statewide initiative that promotes healthful, nature-based outdoor spaces at early child care and education programs. A healthful outdoor environment helps preschool children be more physically active while they play, discover, and connect with nature. CSHCN SDG brought an inclusive lens to this initiative and advocated for intentional inclusion through appropriate language, outreach materials, and policy.
- Reviewed and updated the website and informational resources in English and Spanish for individuals and families seeking services;
- Reviewed and updated the 2020 training plan for new CRCG leaders and members;
- Created a webinar series for CRCG members that included focused technical assistance on using telehealth platforms and hosting virtual meetings in response to the COVID-19 pandemic;
- Developed the biennial legislative report on local CRCG outcomes and systemic barriers;
- Strategized to address gaps in CRCG leadership due to the pandemic and recruit new leaders; and
- Developed and presented the CRCG of the Year recognition award.
CSHCN SDG attended the Texas Respite Advisory Committee (TRAC) meetings to monitor initiatives and identify respite opportunities for families of CYSHCN in the state. The TRAC was established by the HHSC Executive Commissioner to assist the agency in:
- Developing strategies to reduce barriers to accessing respite services;
- Improving the quality of respite services; and
- Providing training, education, and support to family caregivers.
Quarterly meetings were held in combination with the Aging and Disability Resource Center Advisory Committee to address shared interests and promote collaboration.
Performance Analysis: The 5-Year Needs Assessment and annual outreach surveys informed programmatic direction and confirmed that respite remains a vitally needed service. MCH staff and contractors continued efforts to improve access to community-based services and help families navigate their way through complex systems. The baselines for both objectives were established in FY17. Future annual reports will continue tracking the progress CSHCN SDG has made toward achieving these objectives.
Challenges/ Opportunities: COVID-19 significantly impacted inclusion efforts and access to respite throughout the state. Ongoing barriers to living successfully in the community for CYSHCN included negative attitudes towards people with disabilities, accessibility and access to adaptive technologies, absence of free or low-cost inclusive activities, inadequate supports and services for children with behavioral challenges, and lack of short-term community-based crisis services to prevent institutionalization. Respite was not readily available or affordable for many CYSHCN families. Program staff and contractor initiatives including parent networking, sibling support, and educational training/workshops helped strengthen families. Ongoing partnerships with external stakeholders will allow for development of future early childhood trainings focused on inclusion. The ability to provide emergency funds to families impacted by the pandemic allowed contractors to pivot to the needs of their communities.
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