Why does the burden of supporting a family with intellectual disabilities continue throughout life? Reality and direction of improvement in support for families with disabilities

When the child grows up and becomes an adult, will the care of the parents also end? This is often not the case for families with children with intellectual disabilities. The data points out that there is a lifelong burden of support for families with disabilities, and there is a problem with the structure that has been entrusted to individuals and families only. Let's take a look at that reality and support direction.

What does the burden of support look like for a family with intellectual disabilities?

Data show that the upbringing of children with intellectual disabilities does not end in childhood but often leads to lifelong care until after adulthood. Parents' share of daily support, education, career paths, and preparation for old age continues to grow.

This burden should be understood as a family affair, not only in terms of physical fatigue, but also in terms of economic hardship and psychological stress, affecting the lives of the entire family, including siblings.

How does a family-oriented culture increase the burden?

There is a strong family culture in our society that holds families accountable for the care of people with disabilities. The data explains that public assistance has evolved late and that the burden has been concentrated on families.

It's worth pointing out that we need to shift the perception that society shares care responsibilities, as it makes it difficult to ask for support if care is just part of the family.

책이나 논문을 읽을 때 핵심 문장 하나만 옮겨 적어도 정리가 훨씬 수월하더라고요. 학교 도서관의 학술 데이터베이스 사용법을 한 번 익혀 두는 것도 좋을 것 같아요.

What did the quality of life study focus on?

While past research has focused on the deficiencies and functional limitations of individuals with disabilities, more recently, attention has shifted to the circumstances surrounding people with disabilities and the quality of life of the entire family. This change also borders on the difference between the medical and social models of disability.

In other words, there is a growing view that access to change the environment is more important for families to live healthily together than access to curing a person with a disability.

What are the limitations of the current support system?

As shown in the table, the problem is not only in one area, but also across objects, resources, regions, and systems, so it is difficult to sufficiently ease the burden on the family with only partial supplementation.

In what ways can we improve in the future?

These resources can help you expand who you support, expand your budget and workforce, and bridge gaps between regions. In particular, the maintenance of the social welfare delivery system, in which the central government, local governments, and field institutions share roles and cooperate, is a key task.

• Relaxation of support criteria tied to income and disability
• Expanding family support staff and institutions
• Improving service access in non-metropolitan areas

When organizing them into tasks, the logic is naturally followed if they are organized in the order of the reality of the burden of dependency, the cultural background, changes in the research perspective, the limitations of the system, and the direction of improvement.

References: Poston, D., Turnbull, A., Park, J., Mannan, H., Marquis, J., & Wang, M. (2003). Family quality of life: A qualitative inquiry. Mental Retardation, 41 (5), 313–328. A caring society preserves family life.