Care is required for most individuals living with ASD throughout their lifespan. The tasks of care can range from hands on daily living assistance to help managing life skills and finances. Care is provided by a variety of individuals, and much of the care is given by informal caregivers. Day programs, respite services, employment opportunities, and housing all require a range of skilled care providers. Many individuals need help throughout their lifespan but it is often difficult to find affordable and competent staff to work with people with ASD and to help families. Even where adult services exist staff often do not understand the needs or type of support required and families struggle to find and retain good respite providers. The costs of providing quality care are high. Ensuring the availability of skilled workers may be an issue compounded by challenges of aging informal caregivers, increased longevity of ASD individuals and competing demands for care from an increasing seniors population.
The objectives of this project were to examine the costs of caring for individuals living with ASD, to examine the labour market issues related to availability of care providers and to review provincial government websites for promising Canadian policy or programming to address the high costs of care.
Methods: Caregiver literature was reviewed to locate research pertaining to care tasks and costs across the spectrum. Three case studies were created representing three individuals on the spectrum, care tasks and costs were estimated for each. Key care issues and gaps were identified. These gaps in service were used to focus internet searches for Canadian policies or programs that existed to address the problems.
Results: Each individual across the spectrum receives a range of care throughout their lifespan. Care is provided by a variety of paid workers and informal caregivers. Regardless of who is providing the care, the costs to care can be as high as $5.5 million over the lifespan of value for caregiver time above the costs of care for a neurotypical individual. Costs of care will reach this level for severe and profound ASD individuals and may decrease for less severe cases. However, costs may be even higher than $5.5 million if aggressive behaviours are present (2 caregivers required, male providers, and highly trained behavioural staff) and in complex cases (those with co-existing mental health conditions and physical disability).
Conclusions: Standard costs of care previously calculated underestimate the total cost of caregiving time. This project increases awareness of the high costs of care and broadens the policy discussion needed to begin to address how to care for individuals living with ASD over their lifespan.
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