Challenges Faced by Families Supporting Individuals with Profound Intellectual and Multiple Disabilities: Implications for Person-Centered Services

Background: Families caring for a relative with profound intellectual and multiple disabilities (PIMD) experience substantial physical, emotional, social, and financial burdens. The complexity of care requirements, combined with fragmented health and social services, often results in chronic stress and reduced quality of life for both the individual with disabilities and their family. Objective: This paper examines the challenges faced by families supporting individuals with PIMD and identifies key elements required for effective and person-centered services. Methods: A narrative review of family experiences, service provision issues, and examples of good practice was conducted, drawing on published evidence and professional observations. Results: Families frequently provide intensive care for many hours each day and often coordinate support from multiple professionals whose services are poorly integrated. Common challenges include inadequate access to adult services, discrimination, low societal expectations, insufficient respite care, and difficulties during the transition from childhood to adulthood. “Despite these barriers, individuals with PIMD can achieve meaningful participation and an improved quality of life when appropriate support is available. Effective services are characterized by individualized, person-centered approaches that recognize family expertise, promote collaboration across sectors, support communication, and provide adequately trained caregivers. Technological innovations and personalized funding models offer promising opportunities to enhance autonomy and quality of life.