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Navigating Caregiving and Support Systems
This chapter explores the emotional and practical challenges faced by parents of special needs children, particularly in hiring caregivers and navigating waiver programs for care support. It highlights disparities in available services across states, the importance of peer and mentor support, and the need for systemic change to improve care services. Additionally, the conversation addresses the delicate balance between planning for the future and coping with the realities of loss, advocating for a collective societal approach to support families in need.