![IHSIS](/sites/default/files/styles/custom_square/public/project-image/337_AdobeStock_66651439.jpeg?h=b167af74&itok=I6wCbpQT)
Initiatives
Improved Hearing Screening and Intervention Services (IHSIS)
A series of collaborative improvement projects to increase the rate of documented follow-up and intervention services for infants with hearing loss.
![alt](/themes/scott/images/project-variations/variation-a-light-moss-crop.png)
Status: Complete
The multiple collaborative projects ran from 2010 to 2013.
- Who: Early Hearing Detection and Intervention (EHDI) offices representing 28 states, the District of Columbia, Puerto Rico and the U.S. Virgin Islands, in collaboration with parent partners, audiologists and other healthcare professionals and advocates.
- Funder: This project was funded by the Health Resources and Service Administration’s Maternal and Child Health Bureau.
- Our Role: Facilitated Breakthrough Series learning collaboratives to apply quality improvement methodology to improve the systems of care for children with hearing loss.
What IHSIS Project Participants Say
Working with NICHQ has been a very rewarding experience … A partnership with families has been a hallmark of what the Maternal and Child Health Bureau has done for years, but NICHQ really demonstrated how important those partnerships are.
![SmileyFace](/sites/default/files/styles/custom_square/public/testimonial-image/SmileyFace_Icon_350x350_11.jpg?h=555bb598&itok=e3BOrqxP)
Being involved with NICHQ has been a career-changing and life-altering experience in many ways. Quality improvement methodology is not additive to my work, it influences how I do my daily work.
![ElizabethSeeliger](/sites/default/files/styles/custom_square/public/testimonial-image/Elizabeth-Seeliger.jpg?h=ffc2dd3a&itok=7hkU2Hk8)
At the beginning we thought that it'd be another project or another thing to do in our list of things we're supposed to do. But actually what I've learned is this is a better way to do things—a faster, better and effective way. You have to have a goal and objectives. When you work through the process we've been learning at NICHQ, everything is very efficient.
![SmileyFace](/sites/default/files/styles/custom_square/public/testimonial-image/SmileyFace_Icon_350x350_7.jpg?h=555bb598&itok=xHtvJsAE)
Prior to the working with NICHQ, we had had some broad areas of focus for our plan for the year, but really had no strategy or mechanism for testing whether a change that we implemented was an improvement. And we’d always implement statewide before knowing if the change was beneficial. I’ve seen other participants in NICHQ projects make a similar shift and now think about how things are possible instead of impossible.
![ElizabethSeeliger](/sites/default/files/styles/custom_square/public/testimonial-image/Elizabeth-Seeliger_0.jpg?h=4c409409&itok=IQcqGXnS)
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Disability Pride Month
July is Disability Pride Month. AmeriDisability, defines disability pride as accepting and honoring each person’s uniqueness, and seeing it as a natural and beautiful part of human diversity.
Disability Pride Month takes place each year in July, with the first celebrations occurring in Boston in 1990, the year that the Americans with Disabilities Act (ADA) was passed. Disability Pride recognizes disability as fundamental to a person’s identity and something of which they can be proud. This year’s theme, which comes from The Arc’s National Council of Self-Advocates, is “We Want a Life Like Yours.” The Arc states that the theme reflects “the disability community’s dreams for life experiences that are too often denied.”
An individual with a disability is defined by the ADA as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment. According to the Centers for Disease Control and Prevention (CDC), 27 percent of the U.S. population has some kind of disability — that's one in four people.
Join NICHQ in celebrating and empowering all people living with disabilities, this month and beyond, and share a collection of helpful resources and strategies to improve systems of care for children and youth living with special healthcare needs (CYSHCN), their caregivers, and families.
![Mother with son with special health need talking to provider](/sites/default/files/styles/custom_square/public/text-and-image-side-by-side-image/iStock-639794740.jpg?itok=WcWnCwRt)
Resources for Healthcare Professionals
There are a variety of miles to cover and turns to take on the journey of effective engagement and inclusion of a Patient/Family Partner (PFP) onto a work group, advisory council, Quality Improvement (QI) team, or other clinical or health systems initiatives. Pre-planning is likely needed in advance of inviting PFPs to join in on the journey. This roadmap provides a framework for effective engagement and inclusion of a Patient/Family Partner (PFP) onto a work group, advisory council, Quality Improvement (QI) team, or other clinical or health systems initiatives
Reducing Missed Clinic Appointments: People with rare diseases, such as sickle cell disease, experience unique challenges, such as maintaining scheduled appointments. Watch a series of helpful webinars about reducing missed appointments, and download our patient/caregiver infographic that suggests some steps to find solutions and help make getting to appointments easier. This project was funded through the Patient-Centered Outcomes Research Institute (PCORI).
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Resources for Transition from Pediatric to Adult Care
Health care transition is the process of changing from a pediatric to an adult model of health care. There are significant differences between adult and pediatric health care model, which can make transitioning from pediatric to adult care challenging for any young person, but those challenges are often amplified for children with special healthcare needs.
- Care mapping is one of a variety of tools and strategies health professionals can recommend to improve the process of transition from pediatric to adult care for children and youth with special health care needs.
- Learn strategies that providers can use to improve the experience of care for young people living with SCD and enhance the process of transition from pediatric to adult care.
Looking for more resources that support transitions in care? Read 4 Strategies for Transitioning from Pediatric to Adult Care for People Living with Sickle Cell Disease and Improving Transitions in Care Saves Lives.
![Latinx father lifting up daughter with developmental disability](/sites/default/files/styles/custom_square/public/text-and-image-side-by-side-image/iStock-1384357134.jpg?itok=c0dcMZoK)
NICHQ Initiatives Focused on CYSHCN
Improving Care for Children with Special Healthcare Needs: NICHQ is leading a learning and action network (LAN) for seven Statewide Networks for Access and Quality (SNAQ) teams to support a high-quality system of care in Florida that serves all children and youth with special healthcare needs, regardless of insurance status and location.
Improving Sickle Cell Disease Care - Hemoglobinopathies Coordinating Center: NICHQ, with partner organization Abt Associates, is supporting a Hemoglobinopathies National Coordinating Center (NCC) to help SCD treatment demonstration program grantees — including community and federally qualified health centers — address structural and systemic barriers in their regions and implement evidence-based SCD care.
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Before Birth & Beyond
Before Birth & Beyond: Improving Care in MCH is a new equity-focused NICHQ podcast dedicated to discussing pressing issues in maternal and child health through the lens of shared learning, action, and impact.
Before Birth & Beyond: Improving Care in MCH
S2. E4: Benefits of Care Mapping for Providers, Caregivers, and Children and Youth with Special Healthcare Needs
June 27, 2024 SEASON 2 EPISODE 4
S2, E4 Show Notes
EPISODE 4 SUMMARY: On this edition of Before Birth and Beyond, we discuss Care mapping and other strategies and tools to support the transition from pediatric to adult care for children and youth with special healthcare needs. Care mapping is a process that guides and supports the ability of families and care professionals to work together to achieve the best possible health outcomes. Tune in as we explore the benefits of care mapping for improving communication with providers, patients, and caregivers.
Main Story: Benefits of Care Mapping for Providers, Children and Youth with Special Healthcare Needs, and Caregivers
SEGMENT SUMMARY: Care mapping is one of a variety of tools and strategies health professionals, can recommend to improve the process of transition from pediatric to adult care for children and youth with special health care needs. The Florida Children’s Medical Services Learning and Action Network (FL CMS LAN), led by NICHQ in partnership with the Florida Department of Health, recently focused quality improvement efforts on various areas of transition from pediatric to adult care. On this episode, we're joined by Sandra Widland, NICHQ project director, Linda Starnes, Florida Children's Medical Services Title V Statewide Family Leader, and Elsie Garcia, FL CMS LAN Craniofacial Statewide Networks for Access and Quality Family Partner.
RELATED LINKS:
- Care Mapping: A How-To Guide for Patients and Families
- Care maps: De-medicalizing children with medical complexity
- Enhanced Support During and After Transition from Pediatric to Adult Care Needed for People Living with Sickle Cell Disease
- Preparing Children with Special Healthcare Needs for Transition of Care
- Improving Transitions in Care Saves Lives
- GOT Transition
Why I Work in MCH
Gabe Soto has served as NICHQ’s Accounts Payable Coordinator since 2022. Gabe, who recently expanded his family, shares how working at NICHQ has impacted his parenting experience and offers advice to MCH organizations seeking to create more initiatives dedicated to supporting fathers and partners in honor of Men's Health Month.
Learn more about Ana and the rest of NICHQ’s team at https://www.nichq.org/about/team.
![Before Birth & Beyond Header](/sites/default/files/styles/custom_hero_image/public/hero-image-with-circle-image/CAMPAIGN%20-%20MARCH%202023%20-%20EMAIL%20HEADER%20%282%29_0.png?itok=UaoR3QoB)
Before Birth & Beyond
Before Birth & Beyond: Improving Care in MCH is a new equity-focused NICHQ podcast dedicated to discussing pressing issues in maternal and child health through the lens of shared learning, action, and impact.
Before Birth & Beyond: Improving Care in MCH
S2. E3: Empowering Black and Brown Women to Share their Experiences of Care
April 25, 2024 SEASON 2 EPISODE 3
S2, E3 Show Notes
EPISODE 3 SUMMARY: Recognize National Minority Health Month with NICHQ! This year's theme is: Be the Source for Better Health: Improving Health Outcomes Through Our Cultures, Communities, and Connections. Tune in to our latest episode to hear from Kimberly Seals Allers, creator of the IRTH app who shares how IRTH works with communities and hospitals to improve health care quality for Black and brown women and birthing people.
Main Story: Empowering Black and Brown Women to Share their Experiences of Care
SEGMENT SUMMARY: In this episode of Before Birth & Beyond, we sit down with Kimberly Seals Allers, creator of the IRTH app, to discuss the importance of collecting and sharing data to transform the health system and mprove the experience of care for women and birthing people in Black and brown communities.
TAKE ACTION: Download the IRTH app – Apple | Google Play
RELATED LINKS:
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Learn more about the IRTH app
- Explore resources from IRTH
Why I Work in MCH
This month, we’re joined by Dana West, Ph.D., Associate Project Director of Equity, who shares how her upbringing and research in sexual and gender minorities led her to a focus on health equity and maternal and child health.
Learn more about Ana and the rest of NICHQ’s team at https://www.nichq.org/about/team.