Living Under Pressure: A Child's Disability and the Family

Living Under Pressure: A Child's Disability and the Family

Families under pressure

Children living with a disability or chronic illness come in all shapes and sizes. So do their families. A child’s disability or illness can bring a family closer together and uncover new strengths and perspectives.1 But there’s no denying that it can also come with some serious challenges.

On average, caregivers of children with a rare disease spend 53 hours per week on care, and those caring for a child with an untreatable condition spend even more time - a whopping 65 hours per week. As a reminder, a full-time job is 40 hours per week. And unlike other families, families of children with a severe disability often need to provide care throughout adulthood. In a survey of American parents caring for an adult child with intellectual disability, 25% of caregivers spent more than 60 hours per week providing caregiving. 

Careers off track

Caring for a children with a disability or serious illness often pushes careers off track, particularly for women. Based on Census Data, a family with a child with any disability (not necessarily severe) earns 23% less than other families. One study of mothers caring for long-term sick children found that nearly half had left their job to care for their child. Even in a country like Denmark, with extensive government support for families, mothers of disabled children are 50% less likely to advance to top management positions than other mothers. 

And, although a child’s disability can bring a family closer together, it often does not. In fact, in many cases it can lead to a family breaking apart. For example, a study of parents of children with autism found that parents were 70% more likely to divorce. 

Lifetime costs of severe disease and disability

Several studies have brought it all together to compute the overall costs to families. The lifetime cost of caring for a child with severe autism and intellectual disability is estimated at $2.85M (adjusting for inflation), much of which is shouldered by the family. In fact, non-medical costs (including lost income of parents) for a child under 18 with a rare disease that falls on the family are estimated to be $46,000 per each year.

Juno Child Insurance is designed to support families like these so that a child’s disability or illness does not lead to severe financial strain on the family—and so that resources are available to help the child feel cared for and reach their full potential. The benefits are paid in cash so that families can have full flexibility on their use—whether to supplement income, hire additional help, or pay for specialized therapy. This flexibility supports the career aspirations of both parents, and combined with the support and guidance by our advocates, helps the whole family live healthier and happier lives.

Read more about Juno Child Insurance in What is Child Insurance.

Juno is the first company to bring child insurance to the United States. Juno provides up to $500,000 per child in addition to support services to families of children with a severe disease or disability.

1 Several of us involved in building Juno are parents of a child with a disability, and several others involved have multiple decades of professional experience with children with disabilities.