Caring for a child with disability is obviously expensive, but there are hidden costs that are rarely taken into consideration by lawmakers, which leaves families with a crushing financial and emotional burden they usually have to handle on their own.
Lesser Known Financial Costs
Parents of children with severe mental or physical disability have to put up with hidden costs of which policy makers are often not fully aware. For instance, a family with a child with mild mental health issues must spend an additional £49.31 per week to be able to maintain its current living standard. The extra costs may easily jump to an extra £81.26 per week, if the child is severely mentally impaired.
Overall, living costs when raising a disabled child are up to eight times higher than the living costs of families with no disabilities. The additional costs primarily go to extra equipment, clothing, bedding, medication, utilities, and various premiums.
The financial burden of raising a child with complex needs can be all the are greater if one caregiver must work part-time or renounce work altogether to have more time to care for the child. It is estimated that one third of families raising a disabled child need to take out a loan to be able to put food on the table at some point. A decade ago, just 4% of those families had to resort to loans to pay for food.
That means that having a child with disability can increase a family’s risk of sliding into poverty exponentially. As of now, nearly two in five families with disabled children have access to at least one type of income-related benefit. By contrast, just one in 10 families without disabilities needs such benefits.
What’s more, children with disabilities are more likely to be born to poor families, single-parent families, and single-income households. Financial hardships may get worse in such families especially because mothers often have to choose between their job and their disabled children due to poor access to quality childcare.
Seventy-two percent of surveyed mothers of disabled children said that they had to put their career on the back burner or give up work altogether to properly care for their children. When asked why they hadn’t resorted to childcare, 39% said they couldn’t afford it while 33% said they hadn’t found the right person for the job due to lack of experience. Ninety-two percent of U.K. mothers agree that it is harder to find the right specialist to care for a disabled child, with 86% complaining about the poor quality of available childcare opportunities in the U.K.
Hidden Emotional Costs
Caring for severely disabled children can take a huge toll on one’s mental health especially if there is no immediate and constant support. Many parents of children with special needs report high levels of stress and worry, worsening depression, and feelings of frustration, isolation, guilt, anger, helplessness, and grief. Some parents have admitted to sometimes feeling jealousy of the “uncomplicated” lifestyle of people with healthy children.
The chief causes of parental angst and burnout when caring for a child with disability include lack of support, isolation, financial worries, confusion, lack of education, and lack of understanding from other people.
Although there is a silver lining to parenting a disabled child like building more resilience, “becoming a better parent,” steadily morphing into a stronger and better self, and meeting exceptional people who can help you shine despite the hardships, the negative impact of caring for children with severe disability continues to be overlooked or dismissed.
For instance, severely life-altering conditions such as cerebral palsy may require 24/7 care if the child is completely disabled or mentally retarded. Parents’ frustration can quickly build up as there is little to no time left for self care.
Caregivers’ risk of developing mental health issues, including high levels of stress and depression, is swept under the rug as many of these parents reach the point of burnout without even knowing it. Lack of a proper support system is often cited as a main cause of these caregivers’ emotional distress.
Parenting a child with a disability can take a heavy toll on parents and caregivers both financially and emotionally. But unfortunately, governments and society as a whole have little to no consideration to this type of parental distress. Without support, parents with disabled children can quickly slide into debt and mental health issues.
Fortunately, there are things these parents can do to make their lives easier, like building a strong support system, accessing the right government programs, and hiring the proper help to address their time and financial constraints.
For instance, there are specialised lawyers who are ready to provide legal support to families severely impacted financially by extreme disability such as cerebral palsy. There are also professional caregivers that can help mothers to both pursue their careers and raise their disabled children without sacrificing their sanity. There are solutions, you just need to be aware of the problem.
Photo credit: Josh Appel on Unsplash