For Children and Youth with Special Health Care Needs, New York (NY)’s Title V Program selected NPM 12: Percent of adolescents with special health care needs, ages 12-17, who received services necessary to make transitions to adult health care. This NPM was selected because it was voiced as a key priority by youth with special health care needs and their families, reinforced by state-specific population health data. Families reported that only 15% of Children and Youth with Special Health Care Needs receive care in a well-functioning system, and less than 18% of youth ages 12-17 with special health care needs received services necessary to make transitions to adult health care. This is consistent with findings from NY’s Care Mapping process conducted in 2017-2018, and with findings from the community listening forums conducted for this application. This NPM also aligns directly with NYS Prevention Agenda goals and interventions related to support for Children and Youth with Special Health Care Needs.

 

In addition, NY’s Title V Program established one SPM for this domain, SPM 2: Incidence of confirmed high blood lead levels (5 micrograms per deciliter or greater) per 1,000 tested children aged less than 72 months. This SPM was developed to reflect the state’s longstanding commitment to eliminating childhood lead poisoning as a key public health problem in NYS. It is responsive to cross-cutting priorities voiced by families related to safe and healthy environments to support children’s development, and access to comprehensive, high quality health care services. It is also responsive to specific concerns shared by families regarding challenges in accessing and coordinating medical care and related services for children with special health care needs. It builds on critical public health investments and capacity to prevent, identify, and address lead poisoning in NYS, including recent amendments to state public health law, as discussed further below.

 

Three specific objectives were established to align with this performance measure:

 

Objective CYSHCN-1: Increase the percent of NYS adolescents with special health care needs, ages 12-17, who received services necessary to make transitions to adult health care by 5%, from 17.8% in 2017-2018 to 18.7% in 2021-2022 (National Survey of Children’s Health).

 

Objective CYSHCN-2: Increase the percent of children with special health care needs (CSHCN), ages 0 through 17, who receive care in a well-functioning system by 5%, from 15.2% in 2017-2018 to 16% in 2021-2022 (National Survey of Children’s Health).

 

Objective CYSHCN-3: Reduce the incidence of confirmed high blood lead levels (5 micrograms per deciliter or greater) per 1,000 tested children aged less than 72 months by at least 5%, from 3.55 per 1,000 children tested in 2018 to below 2.89 in 1,000 children tested in 2022 (NYS Child Health Lead Poisoning Prevention Program Data).

 

Strategy CYSHCN-1: Engage youth with special health care needs (YSHCN) and their families in state and local efforts to improve systems and practices for supporting Children and Youth with Special Health Care Needs.

 

Families and youth need to be directly involved in program and policy planning and implementation in meaningful roles at all levels. This is consistent with the Title V program’s longstanding commitments to family-centered care/family-professional partnerships and positive youth development. This is a theme woven into all Children and Youth with Special Health Care Needs-serving Title V programs.

 

For example, the Title V Program contracts with three federally designated University Centers for Excellence in Developmental Disabilities (UCEDDs), or Regional Support Centers, to provide training and technical assistance to Local Health Department Children and Youth with Special Health Care Needs programs and to conduct family engagement. The Regional Support Centers are required to employ a family/parent liaison that is a parent with a Child with Special Health Care Needs, a critical component of the Regional Support Centers’ work with families with Children and Youth with Special Health Care Needs and Local Health Departments. Family liaisons bring firsthand experience, perspective, and knowledge of barriers and gaps in care to all aspects of Regional Support Centers’ activities, including meeting with families and resource gathering. Family liaisons are responsible for conducting family engagement sessions with a prescribed set of questions to gauge the needs of families with Children and Youth with Special Health Care Needs and they use this feedback to inform educational materials and trainings for Local Health Departments. 

 

In addition, the 2020-2025 Local Health Department Children and Youth with Special Health Care Needs program contract period includes deliverables to address family and community engagement at many levels. The Local Health Department staff involved families of Children and Youth with Special Health Care Needs in work groups, committees, task forces, and/or advisory committees to improve the system of care for Children and Youth with Special Health Care Needs, involve families and Children and Youth with Special Health Care Needs in local planning activities, such as the Community Health Assessment, and use feedback from families of Children and Youth with Special Health Care Needs to develop training for Children and Youth with Special Health Care Needs staff and providers.

 

Finally, the state’s sickle cell disease contractors at three Hemoglobinopathy Specialty Care Centers work directly and exclusively with youth with Sickle Cell Disease and their families to provide support services. This includes peer support groups, system navigation supports, and self-care services. Hemoglobinopathy Specialty Care Centers conduct peer support groups to gauge barriers to care and transition for youth and young adults with Sickle Cell Disease. Peer support groups also provide opportunity for advocacy and linkages with other individuals and families living with Sickle Cell Disease. Transition Navigators at Hemoglobinopathy Specialty Care Centers engage youth with Sickle Cell Disease to promote and support the transition from pediatric to adult care provider, ensure compliance with appointments and medication, self- management, and preventive health care including non-medical mechanism for pain management and understand what barriers youth experience in caring for themselves. 

 

The Title V Program led the following specific program and policy activities to advance this strategy over the 2021-22 reporting period:

 

CYSHCN-1.1: Maintain at least one dedicated family representative on the state’s Title V Maternal and Child Health Services Block Grant Advisory Council and engaged all Council members in updates and discussions related to Children and Youth with Special Health Care Needs program activities.

 

There is one parent representative from Parent to Parent on the Title V Maternal and Child Health Services Block Grant Advisory Council. Children and Youth with Special Health Care Needs Program engage council members in updates and discussion related to program activities. On April 7th the Children and Youth with Special Health Care Needs Program shared the Health Information Document with NYS Parent to Parent. On June 9th, the three Coordinating Care and Supporting Transition for Children, Adolescents and Young Adults with Sickle Cell Disease contractors presented to the Title V Maternal Child Health Services Block Grant Advisory Council. On October 12, 2021, Children and Youth with Special Health Care Needs staff presented to the NYS Maternal and Child Health Services Block Grant Advisory Council about the overview of our Children and Youth with Special Health Care Needs data for years 2018-2019 findings.

 

CYSHCN-1.2: Collaborate with advocacy groups like Parent to Parent to understand the needs of Children and Youth with Special Health Care Needs and their families, facilitated information sharing, and promoted Local Health Department Children and Youth with Special Health Care Needs programs.

 

Title V Program leadership, Kirsten Siegenthaler, Title V Director, and Suzanne Swan, Children and Youth with Special Health Care Needs Director, participate quarterly in the Council on Children and Families Commissioners’ Cross-Systems Work Group. The Cross-Systems Work Group reviews care coordination for and placement of youth with developmental disabilities. The group focuses on managing extreme cases of long hospital stays, youth placement in care settings outside the home, and increasing efficiencies in the process where possible. In 2022, parents and caregivers who have navigated the process will be added to these meetings on a quarterly basis.

 

Children and Youth with Special Health Care Needs staff attended the 2021 NY State Birth to Five (NYSB5) Virtual Conference held October 15, 2021. They had over 115 individual attendees, 6 presentations and a kick-off with keynote speaker, Richard Gonzales is the federal project officer who is responsible for the Preschool Development Grant Birth through Five (PDGB5) projects nationwide.  

 

Information about free webinar on “Question and Answers Discussion Group for parents of children and adults with Fetal Alcohol Syndrome Disorder” presented by NYS Parent to Parent on January 21. 2022 and March 28, 2022, was shared with Local Health Department Children and Youth with Special Health Care Needs staff.

 

CYSHCN-1.3: Support Regional Support Centers to employ parents of Children and Youth with Special Health Care Needs as family/parent liaisons. Regional Support Centers and parent liaisons conducted surveys, family engagement sessions and family forums to assess and share family needs and apply results to inform family resources and technical assistance for Local Health Department programs.

 

The family specialists for the Regional Support Centers continued to work in every aspect of this project to ensure that the family perspective is a priority. They provided support to families by developing educational materials and family engagement plans with the Local Health Department Children and Youth with Special Health Care Needs staff.

 

The family specialists collaborated to develop resources for Children and Youth with Special Health Care Needs families such as:  a Health Conditions guide which outlines the 27 most common special health care needs conditions (according to the National Survey for Children’s Health) intended to provide technical assistance and resources for local health departments to serve families of Children and Youth with Special Health Care Needs.

 

In addition, the Regional Support Centers staff developed a social media flyer for the Local Health Department staff to adapt and share in their county. Family specialists also supported the Regional Support Centers in the development of a Children and Youth with Special Health Care Needs Resource Directory that will be made available online to provide families, Local Health Departments, and health care providers with current information about state-wide services and supports. Resource Directories are available on each of the three Regional Support Centers’ websites and are continually updated to ensure they are a reliable source of information.

 

CYSHCH-1.4: Support Regional Support Centers to develop a Children and Youth with Special Health Care Needs Resource Directory that will provide families and health care providers with current information about services and supports.

 

Title V staff supports the Regional Support Centers staff in the development and accessibility of the Resource Directory to the public. NYSDOH Title V staff met with the Council of Children and Families staff to discuss opportunities for collaboration. We are developing a Memorandum of Understanding with the NYS Council on Children and Families to add the Children and Youth with Special Health Care Needs directory to their Multiple System Navigator. Title V staff support Local Health Department Children and Youth with Special Health Care Needs programs to involve Children and Youth with Special Health Care Needs and their families in work groups, committees, task forces or advisory committees, local health assessment and planning activities, and other systems development work. Regional Support Centers staff used feedback from families of Children and Youth with Special Health Care Needs to develop training for Children and Youth with Special Health Care Needs staff and providers.

 

NYS Children and Youth with Special Health Care Needs Program keeps track of Local Health Departments’ quarterly reports involving Children and Youth with Special Health Care Needs and their families in work groups, committees, task forces or advisory committees and other Local Health Department assessment and planning activities. Some of these activities have been delayed at Local Health Departments due to their role in COVID-19 response.

 

Title V staff provided regular and as-needed technical assistance to Local Health Departments throughout the reporting period.

• On May 12, 2022, a Back-to-Basics webinar was presented to the Local Health Department, Regional Support Centers, and NYSDOH Regional Office staff. A follow up email with the Back-to-Basics webinar slides, recording and fiscal contract documents, updated Questions and Answers was sent on June 16, 2022.
• The Regional Support Centers presented on the Family Engagement Report on June 21, 2022, focusing on the Lessons Learned from the families of Children and Youth with Special Health Care Needs.
• On September 21, 2022, Children and Youth with Special Health Care Needs staff presented on the statewide NYS Children and Youth with Special Health Care Needs data for 2019-2020.
• The Regional Support Center staff presented a webinar about monkeypox in September 2022 in response to requests from families of Children and Youth with Special Health Care Needs.

 

CYSHCN-1.5: Support Local Health Department Children and Youth with Special Health Care Needs programs to involve Children and Youth with Special Health Care Needs and their families in work groups, committees, task forces or advisory committees, local health assessment and planning activities, and other systems development work. Use feedback from families of Children and Youth with Special Health Care Needs to develop training for Children and Youth with Special Health Care Needs staff and providers.

 

As described above, the Title V Program contracts with the state’s three UCEDDs, which are referred to as the Regional Support Centers, to provide training and technical assistance to Local Health Department Children and Youth with Special Health Care Needs programs and to conduct family engagement. The Regional Support Centers employ a family/parent liaison that is a parent with a Child with Special Health Care Needs.

 

During this reporting year, these meetings were all virtual, and not in-person as intended, due to the COVID-19 public health emergency. Qualitative data from family sessions was compiled and presented to families and a Family Engagement Report was made available to all Local Health Departments. Information from that Report was also used to present to Local Health Department Children and Youth with Special Health Care Needs programs on a quarterly call in 2022. Regional Support Centers also conducted Needs Assessment surveys with each county, as available, to gather feedback and determine gaps and barriers, type of technical assistance needed, and what resources are available in each community. Counties then had the option to establish work plans to help meet their community engagement goals with assistance from the Regional Support Centers.

 

Local Health Department Children and Youth with Special Health Care Needs program contract period includes deliverables to address family and community engagement at many levels. The Local Health Department staff involved families of Children and Youth with Special Health Care Needs in work groups, committees, task forces, and/or advisory committees to improve the system of care for Children and Youth with Special Health Care Needs, involve families and Children and Youth with Special Health Care Needs in local planning activities, such as the Community Health Assessment, and use feedback from families of Children and Youth with Special Health Care Needs to develop training for Children and Youth with Special Health Care Needs staff and providers

 

CYSHCN-1.6: Engage the New York State Association of County Health Officials to promote and bolster Local Health Department Children and Youth with Special Health Care Needs programs to raise awareness of Children and Youth with Special Health Care Needs services and reach and serve more families.

 

The Children and Youth with Special Health Care Needs Director shared the Health Information Document resources with the New York State Association of County Health Officials in April 2022 and they in turned shared with the Local Health Departments. The Children and Youth with Special Health Care Needs Director shared information about the increase in funding for the Children and Youth with Special Health Care Needs program with staff from the New York State Association of County Health Officials to encourage local health departments that have not historically participated in the program to consider the opportunity for their community.  The Children and Youth with Special Health Care Needs Director met with the New York State Association of County Health Officials Executive Director to provide an orientation to the state’s Children and Youth with Special Health Care Needs program on June 1, 2022.

 

CYSHCN-1.7: Support Sickle Cell Disease programs at three Hemoglobinopathy Specialty Care Centers to provide supports by and for youth with Sickle Cell Disease, including peer support groups, system navigation supports, and self-care services.

 

As described above, the state’s three Sickle Cell Disease contractors support youth with Sickle Cell Disease and their families. They provide peer support groups, system navigation supports, and self-care services. Hemoglobinopathy Specialty Care Centers conduct peer support groups to gauge barriers to care and transition for youth and young adults with Sickle Cell Disease. Peer support groups also provide opportunity for advocacy and linkages with other individuals and families living with Sickle Cell Disease. Transition Navigators at Hemoglobinopathy Specialty Care Centers engage youth with Sickle Cell Disease to promote and support the transition from pediatric to adult care provider, ensure compliance with appointments and medication, self- management, and preventive health care including non-medical mechanism for pain management and understand what barriers youth experience in caring for themselves.

 

The Sickle Cell Disease contractors utilize Got Transition® which is a federally funded national resource center on health care transition. The information posted on the NYS Children and Youth with Special Health Care Needs website page was reviewed by their staff: Patience White and Peggy McManus. They provided feedback in October 2021and minor changes were made based on their recommendations.

 

Children and Youth with Special Health Care Needs staff attended the webinar “Improving Health Care Transition through Tele-Transition Services” on October 26, 2021. The webinar highlighted a new video and social story about how to engage in tele-transition services to help you transition from a pediatric provider to an adult provider.

 

The Hemoglobinopathy Specialty Care Centers participated in a virtual full-day conference with the Sickle Cell Advisory Consortium of NY for professionals, clients, and families in November 2021.

 

On March 15th, 2022, Sickle Cell Disease contractors hosted a Sickle Cell Disease Grand Rounds for physicians, nurses, social workers, other health care professionals, and community-based organizations. Updates about bone marrow transplant, hydroxyurea use, and adherence issues were discussed.

 

On June 9th, 2022, the three contracted Hemoglobinopathy Specialty Care Centers presented about their work and experiences implementing the Coordinating Care and Supporting Transition for Children and Adolescent/Young Adults with Sickle Cell Disease program to Title V Maternal Child Health Services Block Grant Advisory Council meeting.

 

Information about the updated 2022 transition coding and new pediatric to adult transition counseling code in the ICD-10-CM Codes as well as the reimbursement tip sheet were shared with the Sickle Cell Disease contractors on 6/10/22.

 

On July 28th, 2022, Department of Health staff met with the staff from the three Hemoglobinopathy Specialty Care Centers to discuss the program and hear about their feedback, successes, and challenges.

 

A Request for Application for Adolescent Transition Services for Sickle Cell Disease was released on 10/06/2022, with anticipated start date of 10/01/2023.

 

The three Hemoglobinopathy Specialty Care Centers regularly share information through their quarterly reports on various Performance measures. The three Sickle Cell Disease contractors reported that there was an increased number of clients who were compliant in keeping appointments, medication adherence, self-management, and preventive health care including non-medical mechanisms for pain management.  Appointment reminders, flexibility in scheduling, availability of transition navigators, home visits and tele-health visits have positively impacted compliance. In addition, virtual support groups and webinars resulted in greater attendance and an increase in interactions among participants.

 

During this reporting period, additional funding through special legislative appropriations was available to five Sickle Cell Disease organizations – three Hemoglobinopathy Specialty Care Centers with existing state funding and two community-based organizations (CBO). Title V staff engaged with the NYSDOH Office of Health Insurance Programs (i.e., the state’s Medicaid program), on a Medicaid Redesign Team for Sickle Cell Disease outcomes, including community partners, clinicians, and experts in Sickle Cell Disease. The team generated a list of recommendations for Medicaid to reduce costs and hospitalizations for patients with Sickle Cell Disease. The most feasible and potentially impactful recommendation was care coordination for Sickle Cell Disease to be identified as a single qualifying condition for enrollment into Health Homes serving children.  This will promote effective treatment that can reduce symptoms, prolong life, and improve well-being for children, youth, and young adults with Sickle Cell Disease. Based on the recommendations of the committee, the Centers for Medicare and Medicaid Services (CMS) State Plan Amendment (SPA) #21-0026, was approved and includes Sickle Cell Disease as a single qualifying condition for Health Homes Serving Adults and Health Homes Serving Children, effective March 24th, 2022. NYS Medicaid has established the Sickle Cell Disease Health Home Managed Care Organization Subcommittee with intention of following the Medicaid State Plan Amendment progress as well as to plan and troubleshoot implementation. The subcommittee’s activities also include the development of informational materials, promotion of Health Homes, and identification of capacity issues. Title V staff serve on the subcommittee.

 

CYSHCN-1.8: Collaborate with other Title V and Division of Family Health adolescent-serving programs, including School-Based Health Centers, Comprehensive Adolescent Pregnancy Prevention, and ACT for Youth Center for Community Action to identify additional opportunities to meaningfully engage adolescents in program and policy development that impacts Children and Youth with Special Health Care Needs.

 

On May 3, 2022, Children and Youth with Special Health Care Needs staff attended “What's Great in the State-A Celebration of Children's Mental Health” at Glens Sanders Mansion.  The 2022 What's Great in Our State celebration, honored the individuals, communities, schools, and organizations across NYS that are making a difference in the field of children and youth mental wellness. Along with the awards, the event featured a keynote address Justin Michael Williams. Children and Youth with Special Health Care Needs staff promoted the Health Information Document at this event.

 

On May 5, 2022, the Office of the Medical Director presented at the annual Leadership Education in Neurodevelopmental and related Disabilities meeting, Westchester Institute of Human Development learning poster session which was hosted virtually. The purpose of the poster session was to have the Leadership Education in Neurodevelopmental and related Disabilities trainees meet with NYSDOH Title V program directors, staff, and other state agencies to share about their team research projects related to Children and Youth with Special Health Care Needs and their families. On July 20, 2022, the Bureau of Women, Infant and Adolescent Health 2022 hosted a conference at which all the programs overseen by the Bureau attended. The Title V Children and Youth with Special Health Care Needs staff participated in the roundtable presentation, "Beginning a Discussion: Delivering Sexual Health Education Programming to Youth with Special Needs,” along with program staff from Staten Island University Hospital’s Comprehensive Adolescent Pregnancy Prevention program staff. The presentation was well received. St. Lawrence County Comprehensive Adolescent Pregnancy Prevention program staff, who deliver programming to autistic youth, attended training. Staff participate monthly in the Sickle Cell Disease Health Home Managed Care Organization subcommittee meetings led by the NYSDOH Office of Health Insurance Programs to provide insight and feedback on children and young adults with Sickle Cell Disease. Serve on the NYS Developmental Disabilities Planning Council and the Individuals and Families Committee to promote inclusion of Children and Youth with Special Health Care Needs-specific focus to the NYS Developmental Disabilities Planning Council’s agenda and policy portfolio. The NYS Developmental Disabilities Planning Council membership includes parents of Children and Youth with Special Health Care Needs from around NYS who are directly involved in decision-making regarding funding opportunities and policy development. 

CYSHCN-1.9: Engage a youth representative in work with the NYSDOH Office of Health Insurance Programs/Medicaid Program on the Medicaid Redesign Team II work group regarding best practices for transition care.

 

This work as reported in the prior reporting period culminated in the inclusion of Sickle Cell Disease as a single qualifying condition for eligibility for the NYS Medicaid Children’s Health Home program, which provides comprehensive care management services. Title V program includes leadership and youth from the state’s three Sickle Cell Disease contractors in this work.

 

In this reporting period, Title V staff presented to NYS Sickle Cell Advisory Committee on NYSDOH Sickle Cell Disease program, the NYSDOH’s Office of Health Insurance’s Medicaid Redesign Team II Work Group and the work being done related to the addition of Sickle Cell Disease as a single qualifying condition for the Medicaid Health Home Serving Children in October 2021.

 

CYSHCN-1.10: Serve on the NYS Developmental Disabilities Planning Council and its Individuals and Families Committee, to promote inclusion of Children and Youth with Special Health Care Needs-specific focus to the Council’s agenda and policy portfolio.

 

The Title V Children and Youth with Special Health Care Needs Director presents the Children and Youth with Special Health Care Needs program ongoing at the quarterly NYS Developmental Disabilities Planning Council and its Individuals and Families Committee meeting to promote the inclusion of Children and Youth with Special Health Care Needs specific focus for the Council’s agenda and policy portfolio.

 

Strategy CYSHCN-2: Enhance care coordination, including transition support services, for children and youth with special health care needs.

 

The Institute of Medicine identified care coordination as a key strategy to improve the effectiveness, safety, and efficiency of the U.S. health care system, improving outcomes for patients, providers, and payers. The 2019-2020 National Survey of Children’s Health data for NYS show that about 71.7% of all children, and 52.5% of Children and Youth with Special Health Care Needs age birth to 17 years who needed care coordination services received effective services. Preparing for and supporting the transition from youth to adulthood is especially important for Children and Youth with Special Health Care Needs and their families. Only 19.1% of youth ages 12-17 with special health care needs received services necessary to make transitions to adult health care, highlighting the need for more specific attention to program and systems improvements in this area. Within this overall measure, there is variation in individual components of transition services. About 62.8% of Adolescents with Special Health Care Needs had a chance to speak to their health care provider alone at their last preventive check-up. While 76.2% of adolescents with Special Health Care Needs reported that their health care provider actively worked with them to gain skills to manage their health, health care, and understand changes in health care happening around age 18, only 15.9% reported that their doctors discussed the shift to a provider who treats adults, if needed.

 

Title V staff identified supports to help youth and families coordinate care, including a specific focus on transition services, to improve efficiency, quality, health outcomes and patient satisfaction. Children and Youth with Special Health Care Needs often require specialty medical services across multiple providers and service settings and may experience multiple transitions as they develop and "age out" of specific programs or services, move across service and community settings, and become more independent growing from children to youth to adults. Care coordination services and more informal transition supports can be critical for Children and Youth with Special Health Care Needs and their families to manage their health and family needs during key periods of change and over time.

 

The Title V Program led the following specific program and policy activities to advance this strategy during this reporting period:

 

CYSHCN-2.1: Provide funding and program guidance to Local Health Department Children and Youth with Special Health Care Needs programs to work with medical providers, childcare providers, and local school systems to improve communications between service providers to assist families with the referral process and support the transition of Children and Youth with Special Health Care Needs from pediatric to adult health care.

 

Community outreach remains an issue for most counties due to their role in COVID-19 response.

The following support and guidance were provided:

• For the Children and Youth with Special Health Care Needs database that was created in the Health Commerce System, there were weekly meetings to discuss the details of the Children and Youth with Special Health Care Needs survey which is the tool the Local Health Department staff utilize to collect about their encounters with Children and Youth with Special Health Care Needs and their families.
• On October 4, 2021, Leanne Fusco and Linsey Coyle, directors from Special Olympics New York shared information with the Local Health Departments about Special Olympics New York sports programs events as well as health initiative and local volunteer opportunities.
• On February 17, 2022, the Children and Youth with Special Health Care Needs program sent out a document of frequently asked questions that came up to a webinar on Health Commerce System data submission to the Local Health Department. included in this email was that went out back in December 2021. Also attached was the NYSDOH Children and Youth with Special Health Care Needs Program Local Health Departments Question and Answer 2021-2022 (Grant Year 2).
• On March 9, 2022, the NYSDOH Office of Health Insurance Programs (i.e., the state’s Medicaid program) and the NYS Office for People with Developmental Disabilities (OPWDD) did a presentation on Health Home Serving Children providing the Local Health Departments with information about how to refer a child to the program and answered questions for the Local Health Departments.
• In April 2022, the Bureau of Child Health distributed the re-designed Health Information Document. which enables Children and Youth with Special Health Care Needs and their families to collect, maintain, and organize health information to be shared with health care providers and other professionals. In April 2022, The Health Information Document was also shared with the NYSDOH Office of Health Insurance Programs, Regional Office staff, Lead Program and Adolescent Health programs, the Division of Family Health, and Sickle Cell Disease partners. In April 2022, the Bureau of Child Health is overseeing work to translate the Health Information Document into French and Urdu. The Health Information Document is posted on the Children and Youth with Special Health Care Needs web page and available in thirteen languages.
• On May 12, 2022, the Children and Youth with Special Health Care Needs program staff presented the Back-to-Basics webinar to the Local Health Departments staff and reinforced the engagement of medical providers, schools, and daycare providers.
• On May 30, 2022, the Children and Youth with Special Health Care Needs program staff met with the Regional Office staff to regroup as a team since Regional Office staff have resumed pre-covid routine responsibilities.  The team met again, on September 26, 2022, to discuss roles and responsibilities to support the Local Health Departments Children and Youth with Special Health Care Needs staff.
• On June 16, 2022, the Children and Youth with Special Health Care Needs Program staff sent the Children and Youth with Special Health Care Needs data submission training resources to the Department of Health Regional Office Staff.
• On October 6, the Children and Youth with Special Health Care Needs program presented to the Local Health Departments on the Back-to-Basics webinar and reinforcing the engagement of medical providers, schools, and daycare providers.

 

The Local Health Departments Children and Youth with Special Health Care Needs programs were notified September 14, 2022, that effective October 1, 2022, funding in the amount of 3.2 million dollars for a total of $5.2 million dollars will be provided to Local Health Departments Children and Youth with Special Health Care Needs programs. The enhanced funding will support additional staff time dedicated to the program and related administrative responsibilities, as well as related non-personal services such as travel, space, and operating expenses. The number of Local Health Departments that implement the Children and Youth with Special Health Care Needs program increased from 49 to 52 counties with the 2022-2023 contract year which began October 2022.

 

CYSHCN-2.2: Continue to support three University Centers for Excellence in Developmental Disabilities, or Regional Support Centers to support youth, families, and Local Health Department Children and Youth with Special Health Care Needs programs. Regional Support Centers will identify resources and develop a comprehensive resource guide for Local Health Departments and families; provide technical assistance to Local Health Departments; conduct family engagement opportunities; identify webinars or professional development for Local Health Departments; develop training and education materials; facilitate communication among Local Health Departments; and identify barriers, unmet needs, and opportunities for Children and Youth with Special Health Care Needs and their families. As described in the previous strategy, families and youth are deeply involved in guiding this work.

 

CYSHCN-2.3: In collaboration with the Regional Support Centers, facilitate professional development and information sharing between Local Health Department programs related to transition, including a webinar on Got Transition®’s Six Core Elements.

 

The Regional Support Centers presented a webinar Planning for Transition to Adulthood which included two parents sharing their experience with the transition process and their children with additional needs on 12/16/22.

 

CYSHCN-2.4: Administer Children and Youth with Special Health Care Needs Support Services, a gap-filling supplemental program that provides reimbursement for specialty health care services for severe chronic illness or physically handicapping conditions in children who meet county financial and medical eligibility criteria. Note: Effective April 2020, NYS public health law was amended to modernize the name of the former Physically Handicapped Children’s Program to Children and Youth with Special Health Care Needs Support Services. This change corrects outdated terminology and directly aligns Children and Youth with Special Health Care Needs Support Services with Title V terminology and programs.

 

While (99%) of NYS’s children are insured, according to the New York State Profile of Children and Youth with Special Health Care Needs, 2019-2020 report, families continue to experience financial challenges meeting the needs of their Children and Youth with Special Health Care Needs. The Title V Program provides funding for direct services through the Children and Youth with Special Health Care Needs Support Services. In 2022, nineteen (19) children received an evaluation and 71 received treatment services funded through Children and Youth with Special Health Care Needs Support Services. Services included durable medical equipment (22%), orthodontia (17%), enteral formula and specialty foods (16%), medications (16%), medical surgical (12%) and physician office (8%). The racial distribution for these Children and Youth with Special Health Care Needs are 64 White and 1 Black; and for ethnicity there were 2 Hispanics, 14 Other and 9 Unknown. 

 

CYSHCN-2.5: Provide grant funding, evidence-based strategies (Got Transition®) and technical assistance to Hemoglobinopathy Specialty Care Centers to support successful transition to adult services for young adults with Sickle Cell Disease, including but not limited to transition policy, tracking and monitoring, transition readiness and planning, transfer of care, and transition feedback and completion.

 

See CYSHCN Activity-1.7 above for details about activities. State funding is allocated to three Sickle Cell Disease contractors at Hemoglobinopathy Specialty Care Centers. The Sickle Cell Disease contractors utilize Got Transition® which is a federally funded national resource center on health care transition.

 

CYSHCN-2.6: Support care coordinators at Hemoglobinopathy Specialty Care Centers to help patients with Sickle Cell Disease with appointments, scheduling, education, peer support and other health care transition services.

 

These providers serve as “transition navigators,” to assist the adolescent make a successful transition to an adult hematologist or other adult medical care provider. They also focus on providing these adolescents with the skills they need to successfully transition to adult care as evidenced by evaluation of readiness and follow-up post transition for satisfaction with care.

 

Title V staff worked to update the quarterly reports and held a call with the three grantees to review new reporting tool and year data summary. Year 5 of the Coordinating Care and Supporting Transition for Children/Adolescent and Young Adults with Sickle Cell Disease (Grant Period 2018-2023) started on 07/01/2022.

 

CYSHCN-2.7: Facilitate collaboration between Title V programs serving youth, including School Based Health Center and Comprehensive Adolescent Pregnancy Prevention programs, to inclusively address broader health needs of Children and Youth with Special Health Care Needs including social emotional health, oral health, healthy relationships, and sexual reproductive health.

 

Title V staff are working to develop list of Adolescent Health programs located at sites with School Based Health Centers. Adolescent health programs, which include Comprehensive Adolescent Pregnancy Prevention program, Personal Responsibility Education Program, and the Sexual Risk Avoidance Education program, were surveyed to identify sites that overlap with School Based Health Center programs. The survey results were combined with the list of School Based Health Centers to develop a comprehensive list.

NYSDOH has a contract with Cornell University’s ACT for Youth Center for Community Action. ACT for Youth presented a three-part webinar series on Adolescent Mental Health in August 2021. The presentation was attended by many programs outside of Adolescent Health Unit, including School Based Health Centers staff. Title V staff are working together to expand access to these opportunities within the various programs and across the NYSDOH, including the Regional Offices.
 

CYSHCN-2.8: Provide subject matter and technical support to NYS Medicaid Program to implement enhanced care coordination and transition support services for Children and Youth with Special Health Care Needs through Medicaid’s Health Home Serving Children, including integration of eligible children also receiving services through the Early Intervention Program, referral of Children and Youth with Special Health Care Needs to Health Homes, and transition from Children’s to Adult Health Homes. 

 

In 2020, the Title V Program participated with the NYSDOH Office of Health Insurance Program staff on site visits to twelve designated Health Home Serving Children agencies. There were five anticipated visits remaining that were to take place in the Summer 2020 before the pandemic but were put on hold until January 2021 with a new virtual site visit process in place. A review of agencies’ policies and procedures is conducted the week prior to the virtual site visit. Children and Youth with Special Health Care Needs staff will provide technical support in reviewing the policy and procedures of each of the Medicaid Health Homes. Staff has provided subject matter and technical support on enhanced care coordination and transition (i.e., transition, language) support during the review of the records during the site visit. 

 

The following site visits took place in 2022: the week of October 18, 2021, Community Care Management Partners; Sunriver was the week of November 15, 2021; January 10, 2022 was Institute of Family Health; the week of February 2, 2022 was Central New York (CNY); the week of March 7, 2022 is Adirondack Health Institute, and the week for May 23, 2022 is Encompass Health Home and the Greater Rochester Health Home Network was the week of June 6, 2022. Coordinated Behavioral Care (also known as Pathway to Wellness) was the week of September 12, 2022.

 

The Children and Youth with Special Health Care Needs staff had a webinar on 5/12/22, to provide information the Local Health Departments on Sickle Cell Disease as a single qualifying condition for Medicaid’s Health Home Serving Children.

 

Enrollment data is for the time of 10/1/2021-9/30/2022: the number of children enrolled in Health Home Serving Children for this time period is reported to be 49,945 unique members, an increase from the 43,285 children enrolled in Health Homes Serving Children for the last year.

 

Strategy CYSHCN-3: Support comprehensive public health efforts to prevent, identify, and manage childhood lead poisoning.

 

Studies show that no amount of lead exposure is safe for children. Even low levels of lead in blood have been shown to affect a variety of adverse health effects including reduced growth indicators; delayed puberty; lowered Intelligence Quotient; and hyperactivity, attention, behavior, and learning problems. Children under six years old are more likely to be exposed to lead than any other age group, as their normal behaviors result in them breathing in or swallowing dust from old lead paint that gets on floors, windowsills, and hands, and can be found in soil, toys, and other consumer products. NY has more pre-1950 housing containing lead paint than any other state in the nation, with approximately 43% of all of NY’s dwellings containing lead-based paint.

 

Effective October 2019, NYS Public Health Law (§1370) and regulations (Part 67 of Title 10 of the NY Codes, Rules, and Regulations) were amended to lower the definition of an elevated blood lead level in a child to 5 micrograms per deciliter (µg/dL), from the previous level of 10 µg/dL. Health care providers in NYS are required to assess or test all young children in accordance with public health regulations, to confirm and report test results, and to ensure appropriate follow-up evaluation and management as needed. Local Health Departments are required to ensure follow up including environmental management based on the child’s blood lead level. The Title V Program supports supplemental grants for lead poisoning prevention programs in Local Health Departments, as well as Regional Lead Resource Centers based in academic medical centers to provide outreach and education to health care provider and families, technical assistance, individual case consultation and treatment of childhood lead poisoning. These programs are administered by the NYSDOH Center for Environmental Health. These Title V-funded program elements complement other components of the state’s comprehensive public health approach that also includes laboratory testing and reporting, surveillance, outreach and education, and neighborhood-based primary prevention and healthy housing initiatives.

 

The Title V Program led the following specific program and policy activities to advance this strategy over the 2021-22 year:

 

CYSHCN-3.1: Provide continued grant funding to Local Health Department Lead Poisoning Prevention Programs and a statewide network of Regional Lead Resource Centers to support enhanced regional and local efforts to reduce the prevalence of elevated blood lead levels in children birth to 18 years.

 

All 58 NYS counties are offered grant funding, and 56 accepted funding. The three approved NYSDOH Regional Lead Resource Centers are as follows: Kaleida Health/Oishei Children’s Hospital sub-contracted with University of Rochester Medical Center (Western Region), the State University of New York (SUNY) Upstate Medical University sub-contracted with Albany Medical Center (Central/Eastern Region), and the Children’s Hospital at Montefiore (Metro/Hudson Valley Region).

 

CYSHCN-3.2: Work with Lead Poisoning Prevention Programs, Regional Lead Resource Centers, and other partners to ensure that all blood lead test results, including testing done in permitted/registered laboratories and point of service testing conducted in health care provider offices, are reported to the NYSDOH within the timeframes required.

 

Staff worked with Lead Poisoning Prevention Programs, Regional Lead Resource Centers, and other partners to ensure that all blood lead test results, including testing done in permitted/registered laboratories and point of service testing conducted in health care provider offices, are reported to the NYSDOH within the timeframes required.

 

All Regional Lead Resource Centers perform on-site and virtual education sessions with practice manager staff to ensure laboratories and health care provider offices are reporting all blood lead results analyzed by point of care devices to the NYSDOH. Email correspondence is used regularly for follow-up to ensure completion of enrollment process for reporting blood lead results to the Lead Poisoning Prevention Programs.

 

CYSHCN-3.3: Through the Regional Lead Resource Centers, support the provision of outreach and education to health care provider and families, technical assistance to providers and Local Health Department programs, individual case consultation, and treatment of lead poisoning among children, pregnant women, and newborns, including chelation treatment where indicated.

 

During educational sessions, guidelines and regulations are discussed to confirm understanding of reporting expectations and what the data reported is used for by Local Health Departments.

 

Regional Lead Resource Centers connected labs to NYSDOH Lead Poisoning Prevention Programs to enroll for reporting. Local Health Departments reach out with lab issues to NYSDOH Lead Poisoning Prevention Programs. The Regional Lead Resource Centers supported the provision of outreach and education to health care provider and families, technical assistance to providers and Local Health Department programs, individual case consultation, and treatment of lead poisoning among children, pregnant women, and newborns, including chelation treatment where indicated. The three Regional Lead Resource Centers provided outreach and education to over 948 physicians during the 2021-2022 program year, technical assistance to providers and Local Health Department programs, individual case consultation and treatment of lead poisoning was conducted over 939 times, and chelation treatment was performed 63 times.

 

CYSHCN-3.4: Through the Local Health Department Lead Poisoning Prevention Programs and Regional Lead Resource Centers, promote clinical prevention and screening practices in accordance with state requirements.

 

The Local Health Department Lead Poisoning Prevention Programs and Regional Lead Resource Centers promoted clinical prevention and screening practices in accordance with state requirements, including:

• Routine blood lead testing for all children at age one year and again at age two years.
• Assessment of all children ages six months to six years at every well visit for risk of lead exposure, with blood lead testing as indicated by risk assessment.
• Provision of anticipatory guidance for all families about lead poisoning prevention as part of routine care.

 

CYSHCN-3.5: Through the Local Health Department Lead Poisoning Prevention Programs and Regional Lead Resource Centers, ensure that all children with elevated blood lead levels received appropriate evaluation and management.

 

The Local Health Department Lead Poisoning Prevention Programs and Regional Lead Resource Centers ensured that all children with elevated blood lead levels received appropriate evaluation and management, including:

• Confirmatory venous blood lead testing for capillary screening results > 5 µg/dL.
• A complete diagnostic evaluation that includes a detailed lead exposure assessment, nutritional assessment, and developmental screening.
• Medical treatment, as needed.
• Referral to the appropriate Local Health Department for environmental management.

 

CYSHCN-3.6: Through the Regional Lead Resource Centers, increase capacity and sustainability in local health care and public health systems by engaging health care providers and professional medical groups in leadership roles within regional or community coalitions focused on the prevention and elimination of lead poisoning.

 

During the 2021-2022 program year, the three Regional Lead Resource Centers participated in over 100 regional and community-based lead poisoning prevention coalition meetings. A NYS Lead Advisory Council meeting was held on April 20, 2022. Various topics were discussed including Childhood Lead Poison Prevention, CDC reference value, LeadCare II accuracy at low values, and COVID’s impact on lead testing.

 

Strategy CYSHCN-4: Apply public health surveillance and data analysis findings to improve services and systems related to health and health care for children and youth with special health care needs.

 

Title V staff continue to assess all available data sources to inform public health improvement strategies related to Children and Youth with Special Health Care Needs. A recently drafted summary document titled “New York State Profile of Children and Youth with Special Health Care Needs, 2019-2020", which updates the program’s current 2018-2019 summary, may serve as one starting point for additional work in this area. This report explores the demographic, health, and functional difficulty profile of the NYS Children and Youth with Special Health Care Needs population, determines the impact that having special health care needs has on children and families, and identifies areas in most need of improvement to ensure NYS Children and Youth with Special Health Care Needs receive care in a well-functioning system. As additional data become available, Title V staff will update this report, make it available through the NYSDOH public website, and share it with Children and Youth with Special Health Care Needs contractors, partner organizations like Parent to Parent and the New York State Association of County Health Officials.

 

The Title V Program led the following specific program and policy activities to advance this strategy during the 2021-22 year:

 

CYSHCN-4.1: Complete a careful analysis of the revised National Survey of Children’s Health when available to assess available measures, trends, and other updates related to Children and Youth with Special Health Care Needs in NYS.

 

Title V staff completed a careful analysis of the revised 2019-2020 National Survey of Children’s Health when available to assess available measures, trends, and other updates related to Children and Youth with Special Health Care Needs in NYS. Key findings included that 39% of Children and Youth with Special Health Care Needs live in households with income below 200% of the federal poverty level. About 8.8% of Children and Youth with Special Health Care Needs have their daily activities greatly affected by their health condition(s); 13.3% of Children and Youth with Special Health Care Needs ages 6-17 missed 11 or more school days in a year, compared to 3.3% of NYS children without Special Health Care Needs; and nearly half (45.2%) of Children and Youth with Special Health Care Needs ages 6-17 had trouble making or keeping friends. Families of Children and Youth with Special Health Care Needs report higher out-of-pocket medical expenses, have trouble paying medical bills, spend more time coordinating their child’s health care, and report reducing or stopping work due to their child’s health. In 2019–2020 the five key components indicating a child meets medical home criteria showed only 40.8% of care met the criteria, compared to 50.6% of children without Special Health Care Needs.

 

CYSHCN-4.2: Collaborate with the U.S. Census Bureau to conduct an over-sample of NYS 2022 National Survey of Children’s Health for NYS to allow for enhanced sampling of Black/African-American, Hispanic, including Children and Youth with Special Health Care Needs.

 

Title V staff collaborated with the U.S. Census Bureau to conduct an over-sample of NYS 2022 National Survey of Children’s Health for NYS to allow for enhanced sampling of Black/African American, Hispanic, and Children and Youth with Special Health Care Needs populations. 2022 survey data will be available in fall 2023. 

 

CYSHCN-4.3: Analyze and report on available Children and Youth with Special Health Care Needs data for NYS, including data from the National Survey of Children’s Health, share reports with Local Health Departments and other stakeholders, and post on the Department’s public website.

 

Title V staff analyzed and reported on available Children and Youth with Special Health Care Needs data for NYS, including data from the National Survey of Children’s Health, share reports with Local Health Departments and other stakeholders, and post on the Department’s public website. 2019-2020 NYS Profile of Children with Special Health Care Needs report is posted (https://www.health.ny.gov/community/special_needs/docs/cshcn_profile_2019-20.pdf)

 

CYSHCN-4.4: Develop and implement plans for updating the current data reporting methods (quarterly and annual reports) of Local Health Department Children and Youth with Special Health Care Needs programs and Sickle Cell Disease care transition programs to NYSDOH Title V program. Analyze and share relevant data collected from programs to improve services and inform larger program and policy work related to Children and Youth with Special Health Care Needs.

 

Title V staff developed and implemented plans for updating the current data reporting methods (quarterly and annual reports) of Local Health Department Children and Youth with Special Health Care Needs. Analyzed and shared relevant data collected from programs to improve services and inform larger program and policy work related to Children and Youth with Special Health Care Needs.

 

NYSDOH Children and Youth with Special Health Care Needs continues to collect data from Local Health Departments. A new data collection went live on the Department’s Health Commerce System on October 1, 2021. All NYSDOH Children and Youth with Special Health Care Needs staff received training on the Health Commerce System. A data submission guide and training materials for the Local Health Departments were written and updated when indicated. Also, Local Health Department trainings were conducted on 9/20/21, 9/28/21, 9/30/21, 12/13/21, 12/20/21, 1/10/22, 1/25/22, 2/17/22, 2/28/22, 3/17/22, and 4/14/22 before and after launching the data system. In addition, Training topic survey sent to Local Health Departments on 3/4/22 and a FAQ was designed and is continually updated as more questions come in.

 

Children and Youth with Special Health Care Needs program staff and data team staff conducted one-on-one trainings with Local Health Departments to answer questions and review the Children and Youth with Special Health Care Needs data collection survey. Staff used the data gathered from the Children and Youth with Special Health Care Needs programs to identify specific areas for further improvement and to inform improvement activities. 

 

An analysis of the Local Health Department Children and Youth with Special Health Care Needs data for 2019-2020 program data demonstrated that of the 1,217 Children and Youth with Special Health Care Needs children were served, 52.42% had Medicaid, 26.29% had commercial insurance, 6.9% had Child Health Plus insurance, 11.42% had other insurance, and 1.81% had no insurance reported. Additionally, 5.34% of children had Supplemental Security Income (SSI). Sixty-five percent of Children and Youth with Special Health Care Needs served were White, 12.9% African American, 2.22% Asian or Pacific Islander, 0.99% American Indian or Alaska Native, 5.01% more than one race, 0.66% other race, and 13.39% unknown race; 11.75% of children were Hispanic. The percent of children reported to have a primary care provider was 98.85%, which is an improvement from the 98.43% in 2018-2019 data. An optional data field for type of financial assistance needed by families for aspects of care was added. Among those responded (n=38, 3.12%), 50% needed assistance for a service not covered by insurance, 23.68% for a service exceeding the limit of the benefit package, 18.42% needed help with co-pays, 5.26% for deductible costs, and 2.63% for premium costs. In addition, information about referrals from the state’s Early Intervention Program was included. Approximately 26.48% of Children and Youth with Special Health Care Needs were referred by Early Intervention Program which is similar to last year (26.34%). There were 21 children referred to HH in 2019-2020, compared to 33 children the year before.

 

The annual Children and Youth with Special Health Care Needs data that is collected from all the Local Health Departments was compiled and corrected for errors. A webinar was held September 21, 2022, to report on the statewide Children and Youth with Special Health Care Needs findings. An individual county data report was sent to each county and the webinar included guidance on how to read the individual report. The report serves as a program quality improvement tool as well. The Children and Youth with Special Health Care Needs data profile report included allocated funds, funds spent, the estimated number of Children and Youth with Special Health Care Needs percent and actual number of children served. In this webinar, staff also informed Local Health Department that Sickle Cell Disease is approved as a single qualifying condition for Health Home eligibility. Lastly, the Regional Support Centers gave an update on their work and family sessions.

 

Strategy CYSHCN-5: Apply a health equity lens to Title V activities to address social determinants of health and reduce disparities that impact the health and well-being of children and youth with special health care needs.

 

As noted in other domains, maternal and child health outcomes are impacted by the social determinants of health, or the conditions in which people are born, live, work, play, learn, and age. The social determinants of health include factors like socioeconomic status, education, community environment, employment, social supports, and access to health care services. Systematic differences in the distribution of power and resources due to racism and other biases are root causes of inequities in access, availability of services, and quality of care. All ten priorities that emerged from community members' input during the Needs Assessment revolve around the social determinants of health and inequities. These factors and inequities impact the health outcomes of both individuals and entire communities.

 

Many NYS families of Children and Youth with Special Health Care Needs are struggling with poverty, transportation, access to care (including availability of specialists), and sometimes employment, as many caregivers reported having to decrease hours worked or leaving jobs altogether to care for their children and coordinate care. Families facing day-to-day challenges like these may be less able to seek and use programs, or to take advantage of opportunities to provide feedback to Local Health Departments or Regional Support Centers. NYSDOH, Regional Support Centers, and Local Health Departments need to meet people where they are, provide multiple methods and means for Children and Youth with Special Health Care Needs and their families to engage, and ensure that a diverse population is being recruited and retained by Local Health Departments.

 

The Title V Program led the following specific program and policy activities to advance this strategy over the 2021-22 year:

 

CYSHCN-5.1: Support local Children and Youth with Special Health Care Needs programs based in Local Health Department, with coverage increasing from 49 to 52 counties beginning October 2022.

 

Support local Children and Youth with Special Health Care Needs programs based in Local Health Departments, with enhanced funding in the amount of 3.2 million dollars for a total of $5.2 million dollars. The enhanced funding will support additional staff time dedicated to the program and related administrative responsibilities, as well as related non-personal services such as travel, space, and operating expenses. The number of Local Health Departments that implement the Children and Youth with Special Health Care Needs program increased from 49 to 52 counties (this includes upstate and NYC) with the 2022-2023 contract year which began October 2022.

 

The pandemic had a serious impact on Title V Children and Youth with Special Health Care Needs staff’s ability to support local Children and Youth with Special Health Care Needs programs. Children and Youth with Special Health Care Needs staff were reassigned to COVID-19 response activities including the COVID-19 hotline, negative call center, positive call center and running the Mass Vaccination Site(s) (Point of Dispensing).

 

Also, many Local Health Department Children and Youth with Special Health Care Needs staff were pulled into COVID-19 response which made them unavailable to administer the Children and Youth with Special Health Care Needs programs and impacted their ability to provide support to Children and Youth with Special Health Care Needs and their families.  For example, outreach was limited. Information was still provided as best as possible through mailings or Facebook or telephonically. Information about local free food distributions and mental health support, suggestions on activities to do during COVID-19, and safety information related to COVID-19 were posted on many Local Health Department websites.

 

 

The Regional Support Centers’ family engagement report highlighted the impact of COVID-19 on families of Children and Youth with Special Health Care Needs. Some of the themes that emerged from families around COVID-19 were disruptions to services and evaluations, increased isolation, increased anxiety and fear, increased exhaustion and stress, mixed experiences with virtual services, lack of staffing, increased mental health needs, financial difficulties, and noted positive outcomes of COVID-19 measures.

 

CYSHCN-5.2: Work with the Regional Support Centers and Local Health Department Children and Youth with Special Health Care Needs programs to integrate health equity into written materials, communication, outreach, and referrals for Children and Youth with Special Health Care Needs and families, all of which will reflect the ethnicity and diversity of the community, including engagement strategies. Health literacy will be supported by providing information in multiple languages, at appropriate reading levels and abilities, as available.

 

Worked with the Regional Support Centers and Local Health Department Children and Youth with Special Health Care Needs programs to ensure that health equity is integrated into written materials, communication, outreach, referrals, and engagement strategies and reflects the diversity of the community. Health literacy was supported by encouraging counties to provide information in multiple languages, at appropriate reading levels and abilities, as available.

 

As stated above, the Health Information Document was updated during this reporting period and posted to the Department of Health’s Children and Youth with Special Health Care Needs web page. The Department of Health translates important health related materials into the 12 most commonly spoken languages in NYS – Spanish, Chinese, Russian, Yiddish, Bengali, Korean, Haitian Creole, Italian, Arabic, Polish, French and Urdu.

 

“Community Integration Webinar | Children & Youth with Special Health Care Needs” was presented by the Regional Support Centers on 10/7/21. This webinar provides education on how to support Children and Youth with Special Health Care Needs in the community, such as recreational settings.

 

On December 7, 2021, the Children and Youth with Special Health Care Needs staff attended the Log-in2Learn: School of Hard Knocks: The Impact of the Pandemic on School Children and Their Families. Children and Youth with Special Health Care Needs staff learned learn about issues affecting student mental health and well-being from Donna M. Bradbury and Bonnie Catlin from the NYS Office of Mental Health's Office of Prevention & Health Initiatives.

 

On 12/8/21 the Regional Support Centers presented a “Children and Youth with Special Health Care Needs Family Forum” by engaging families of Children and Youth with Special Health Care Needs through discussion groups and interviews. The Regional Support Centers learned about families' needs and experiences across NYS to improve Children and Youth with Special Health Care Needs Programs at NYS Local Health Departments.

 

On December 12, 2021, the Regional Support Centers did an interactive webinar called “What Matters: MI + Quality Improvement to Reduce Assessment Burden” which focused on reducing assessment burden through motivational interviewing and quality improvement strategies. This webinar aims to support Local Health Department staff in completing the Health Commerce System Data Collection Form when communicating with Children and Youth with Special Health Care Needs and their families.

 

On December 23, 2021, a parent advocacy webinar was conducted by the Regional Support Centers in Spanish on “Barreras a la Integracion Comunitaria” (Barriers to Community Integration).

 

On January 4, 2022, the Regional Support Centers presented on “Children and Youth with Special Health Care Needs Project – Years 3,4, and 5: Comprehending the Technical Assistance Process and Project Calls” a webinar to understand the Children and Youth with Special Health Care Needs Project technical assistance process and review the different types of calls held through the project. This was presented again on February 7, 2022.

 

May 12, 2022, the Children and Youth with Special Health Care Needs 2020-2025 workplan was re-introduced to the Local Health Departments during the Back-to-Basics webinar.

 

In collaboration with the Dental Unit, a survey had been sent to all Local Health Departments that ended 5/13/22 regarding an opportunity to receive oral hygiene kits to families of Children and Youth with Special Health Care Needs.

 

On June 24, 2022, the Children and Youth with Special Health Care Needs staff attended “Systems of Care & Healthy Mental Development: Effective Strategies to Support Children and Youth with Special Health Care Needs in the Medical Home Episode 1” which featured the Nebraska Partnership for Mental Healthcare Access in Pediatrics and the University of Michigan Child Collaborative Consultation Program. Participants learned how these two programs addressed access to behavioral and mental health care for Children and Youth with Special Health Care Needs, in addition to the key partners and collaborators that support their respective programmatic efforts.

 

On June 30, 2022, the Children and Youth with Special Health Care Needs staff attended the Episode 2 of the “Systems of Care & Healthy Mental Development: Effective Strategies to Support Children and Youth with Special Health Care Needs in the Medical Home”. This episode featured pediatricians Marian Earls, MD, MTS, FAAP and Richard Antonelli, MD, MS, FAAP. They discussed how pediatricians and the medical home can support behavioral and mental health care for Children and Youth with Special Health Care Needs.

 

On June 29, 2022, Children and Youth with Special Health Care Needs Director and Assistant Director joined the inter-departmental Adverse Childhood Experiences (ACEs) workgroup. This group discussed the high incidence of Adverse Childhood Experiences among Children and Youth with Special Health Care Needs.

 

September 28,2022 Docs for Tots. Dr. Liz Isakson presented Mental Health and Developmental Milestones webinar.

 

The Regional Support Centers are developing: Who are Children and Youth with Special Health Care Needs video vignettes.

 

CYSHCN-5.3: Develop and implement data collection systems that allows Local Health Department Children and Youth with Special Health Care Needs programs and Sickle Cell Disease care transition grantees to identify, track, and address disparities.

 

On September 20, 2021, our data team conducted a training session on the Children and Youth with Special Health Care Needs Health Commerce System data submission for the Local Health Departments. In conjunction with a live demonstration of the database, this webinar provided information on Children and Youth with Special Health Care Needs survey questions, data entry, and questions that were added or modified.

 

A new Children and Youth with Special Health Care Needs data collection tool has been developed using the Person-based Electronic Response Data System (PERDS) application in the NYSDOH’s Health Commerce System. This Children and Youth with Special Health Care Needs data collection tool new was rolled out on October 1, 2021. Trainings and technical assistances are provided to Local Health Departments as needed. In preparation for the new data collection tool, we had many meetings about making minor changes such as adding gender identity options, adding all 10 languages, and asking the parent what their primary language is and what’s the child’s language is. Also, the transition section was revised to include if the child is between age 14 and 21 and if yes, the skip pattern would take them to 2 other questions on transition: 1) “Did child receive information needed for transition to adult health care?”, and 2) “Did your child receive services necessary for transition to adult health care?”.

 

The Person-based Electronic Response Data System on Health Commerce System is a secure online system supporting the exchange of health information by Local Health Department Children and Youth with Special Health Care Needs program staff. State program managers and Local Health Department Children and Youth with Special Health Care Needs program staff can access data in a timely manner to identify, track, and address disparities among Children and Youth with Special Health Care Needs.

 

For Sickle Cell Disease care transition contractors, a quarterly tool was updated and circulated among the grantees. On quarterly conference calls, grantees were oriented on the updated tool and data summary.

 

CYSHCN-5.4 Partner with key stakeholders such as Parent to Parent, Local Health Departments, and Regional Support Centers to identify and share best practices to address racial justice and health equity.

 

Title V staff partnered with key stakeholders such as Parent to Parent, Local Health Departments, and Regional Support Centers to identify and share best practices to address racial justice and health equity.

 

The Regional Support Centers produce a newsletter for Local Health Department Children and Youth with Special Health Care Needs Program staff and partners called Children and Youth with Special Health Care Needs Clips. The newsletter features professional development opportunities, upcoming events, and recent research. Some examples include:

• A Roadmap for Collaboration among Title V, Home Visiting, and Early Childhood Systems Information on Disability & Intersectional Identities.

• Habla con especialistas en salud y en discapacidades del desarrollo sobre la vacuna del COVID.

• Multiple Webinars by Parent to Parent of NYS: Grandparents Raising Grandchildren with Special Needs, Residential Parent Group, and Family Empowerment Program.

• Information on a Workshop on Guardianship & Future Care Planning; ¿VACUNARSE O NO VACUNARSE?; Encontrar Una Dirección Significativa y Sostenible Como Familia: webinar on Parents of Children with Disabilities Join The Legal Battle Over Masks in Schools.

 

Other work included engaging or participating in:

• Learning from Patients to Provide Accessible Healthcare and Effective Communication for Patients who are Blind or have Low Vision.
• NYS Office for New Americans: Empowering New American Parents in the Early Identification of Disabilities in Children.
• The American Association on Intellectual and Developmental Disabilities (AAIDD) webinars.
• 2022 Statewide Epilepsy Conference.
• Presentation: ADHD Risk Factors - Identified, Explained and Addressed

 

In October 2021, Title V director attended the Food Insecurity Symposium which aligns with our Title V priorities. 

 

On November 3, 2021, Children and Youth with Special Health Care Needs staff attended the NYS Pyramid Model Visioning Session. This provided the State Leadership Team members, time to review the original vision for the Pyramid Model Initiative and reflect on the accomplishments and lessons learned. It provided an opportunity to explore new and broadening areas of opportunity for the initiative. 

 

The Regional Support Centers had Elevatus Training on Developing an Effective Sexuality Policy for Your Agency on October 18, 2021, to the Local Health Departments. Many NY agencies for Individuals with I/DD do not have sexuality policies that help support professionals to address this topic. Professionals have expressed concerns about whether they can and should communicate with individuals about sexuality or not and if it could cause them to lose their job. This webinar was designed specifically for NY agencies and addressed the importance of a sexuality policy, what needs to be included in a policy, NYS Office for People with Developmental Disabilities (OPWDD) recommendations, strategies for gaining policy buy-in and barriers to buy-in, as well as specific consideration for developing a policy that supports both individuals and the support professionals in their lives.

 

Information about “Transgender Affirming Primary Care Webinar” held on November 17, 2021, was shared with the Local Health Department staff.  Health Resources and Services Administration Region 2 (which is New York, New Jersey, Puerto Rico, and the U.S. Virgin Islands) held the webinar in collaboration with Mt. Sinai NYS HIV Primary Care and Prevention Center of Excellence. The course provides an overview of the most appropriate language, best practices, and key terms to use when providing quality healthcare services to patients that identify as transgender or non-binary. With the use of case studies, audience members were walked through various barriers that impact access to care that is specific to the trans and non-binary communities.

 

In addition to the strategy updates above, the Department has taken great strides to incorporate health equity and racial justice throughout a wide variety of Title V activities, not limited to the activities within this strategy. In July 2022, the Department announced several reorganization efforts, including the creation of the Office of Health Equity and Human Rights. 

This new office will address health disparities and work to improve diversity, equity, and inclusion within the Department. The Office of Health Equity and Human Rights will be a resource for programs across the Department as we work towards common goals of equitable health for all New Yorkers.

 

As described in the Women and Maternal Health section, a new Bureau of Health Equity and Community Engagement was created within the Division of Family Health to address disparities highlighted in the COVID-19 pandemic and build a foundation for future epidemic responses. More information about this new bureau in future annual reports and applications for the 2022-23 program year.

 

The Division of Family Health convenes a cross-division Racial Justice Work Group. All members of the Work Group were assigned to COVID-19 activities during this reporting period. During that time many of the members were conducting health equity activities as it relates to COVID-19. Staff were in involved in the contact tracing community support response, vaccine equity task force, training of the contact tracing workforce on equity and diversity, NYS Birth equity improvement project and the Together We Can Inclusion project. During this time staff reviewed some NYSDOH Request for Applications to ensure a health equity lens was incorporated during development.

 

In October 2021 the work group reconvened to resume heath equity efforts within the Department and will recruit new members. With so many new staff in the Division of Family Health, the primary focus of the work group will be training all staff to ensure internally we all have a universal understanding of health equity, health disparities and social determinants of health. Staff are currently seeking to work with the NYSDOH AIDS Institute health equity coordinator to collaborate efforts and learn from one another.

 

The NYS Title V Program established one Evidence-Based Strategy Measures (ESM) to track the programmatic investments and inputs designed to impact NPM 12:

 

ESM CYSHCN-1: Percent of individuals ages 14-21 with sickle cell disease who had transition readiness assessments completed, among those who were served through the Sickle Cell Disease Care Transition program and kept a routine medical appointment.

 

Data for this measure will come from Sickle Cell Disease Care Transition contractor reports. The baseline value for this measure, from the 2018-19 program grant cycle was 40.3%. The program exceeded the improvement target of 5% for 2022, to reach 42.3%. The data for 2021-22 indicates that 65% had transition readiness assessments completed among those who were served through the Sickle Cell Disease Care Transition program and kept a routine medical appointment.