Summary: Children in America today are at an unacceptably high risk of developing neurodevelopmental disorders that affect the brain and nervous system including autism, attention deficit hyperactivity disorder, intellectual disabilities, and other learning and behavioral disabilities. These are complex disorders with multiple causes—genetic, social, and environmental. The contribution of toxic chemicals to these disorders can be prevented. Approach: Leading scientific and medical experts, along with children’s health advocates, came together in 2015 under the auspices of Project TENDR: Targeting Environmental Neuro-Developmental Risks to issue a call to action to reduce widespread exposures to chemicals that interfere with fetal and children’s brain development. Based on the available scientific evidence, the TENDR authors have identified prime examples of toxic chemicals and pollutants that increase children’s risks for neurodevelopmental disorders. These include chemicals that are used extensively in consumer products and that have become widespread in the environment. Some are chemicals to which children and pregnant women are regularly exposed, and they are detected in the bodies of virtually all Americans in national surveys conducted by the U.S. Centers for Disease Control and Prevention. The vast majority of chemicals in industrial and consumer products undergo almost no testing for developmental neurotoxicity or other health effects. Conclusion: Based on these findings, we assert that the current system in the United States for evaluating scientific evidence and making health-based decisions about environmental chemicals is fundamentally broken. To help reduce the unacceptably high prevalence of neurodevelopmental disorders in our children, we must eliminate or significantly reduce exposures to chemicals that contribute to these conditions. We must adopt a new framework for assessing chemicals that have the potential to disrupt brain development and prevent the use of those that may pose a risk. This consensus statement lays the foundation for developing recommendations to monitor, assess, and reduce exposures to neurotoxic chemicals. These measures are urgently needed if we are to protect healthy brain development so that current and future generations can reach their fullest potential.
A majority of individuals with intellectual and developmental disabilities need the support of a family caregiver. In the USA, more states are transitioning to a managed care model to provide long‐term services and supports (LTSS) and family caregivers are vital partners in the successful management of LTSS. This study's purpose is to illustrate the lived experience of receiving LTSS in a managed care model from the family caregiver perspective. In‐depth semi‐structured interviews were completed with 16 caregivers in four states with Medicaid managed LTSS (MLTSS). The themes include the importance of the family caregiver as supported and active partners in the provision of MLTSS, the family caregiver experiences with care coordination and access to services in MLTSS, and the family caregivers’ overall impression of MLTSS. Results indicate caregiver advocacy is critical to coordinating needed MLTSS and family support services help caregiver's maintain their vital role in the MLTSS system. Access to services and care coordination in MTLSS varies depending on state of residence. Some caregivers experienced less flexibility in the provision of services and supports and limited access to services making it more complicated for them to feel supported in their caregiving role. Care coordination in MLTSS was largely seen as paperwork processing function. Family caregivers can provide a wealth of knowledge from lived experiences on best practices for MLTSS. Given the move to more home and community‐based services, the role of the family caregiver as an active partners in MLTSS will remain the reality for many individuals with IDD. Family caregivers are a key component in MLTSS and more needs to be done to encourage their involvement in the design and oversight of MLTSS. More research is needed to explore best practices for effective stakeholder engagement in the provision of MLTSS.
This article discusses the history of the grassroots movement led by self-advocates and their families to replace the stigmatizing term "mental retardation" with "intellectual disability" in federal statute. It also describes recent and pending changes in federal regulations and policy to adopt the new terminology for Social Security and Medicaid.
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