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.
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).
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.
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.
