• Opinion
  • November 5, 2018
  • 7 minutes
  • 0

Parents of disabled children face impossible choices. Paid family leave can make them easier

Opinion: Paid leave can increase workforce participation and ease household budget worries

This opinion piece was written by Lynda Lahti Anderson, a researcher at the Research and Training Center on Community Living at the University of MinnesotaIt appears in our early childhood newsfeed.


You and your partner are expecting. You waited to conceive until you were well established at work, budgeted carefully and discussed balancing care needs with job demands — all so you could contribute to the workforce while caring for your new baby.

Then you find your child has a disability. She requires twice the care you planned for. No one else can give your child the care that you can, but no one else can provide for her economically like you can, either. What would you do?

Right now, in most US states, there’s no good answer. But there could be — adopting paid leave policies for parents whose children have disabilities has been proven to work for both families and the economy.

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A parent’s dilemma

Vicky and Rob, a couple who faced this dilemma are the parents of three children.  They both worked outside of the home after having their first two children.  It was tiring, but they managed.  Their third child was diagnosed with an intellectual disability and autism.  Vicky and Rob found that meeting the needs of their youngest child made working nearly impossible.  Vicky and her husband faced work days that were interrupted by the need to go to medical and therapy appointments, pick their child up from school if he was having a difficult day, attend care coordination meetings or miss work when out-of-school care providers didn’t show.

The family decided that Vicky would stay home to manage their son’s care, because Rob’s job provided important health insurance benefits.  The decision has alleviated some of the day-to-day stress of balancing the needs of their children, but the tight budget causes Vicky and Rob worry.

All parents of children face challenges balancing work, child-rearing, and family responsibilities.  However, parents of children with disabilities often perform caregiving duties related to their child’s disability, beyond what is typical for child-rearing.  These extra caregiving responsibilities often come with difficult choices, and financial consequences. On average, families that include a person with a disability have annual incomes 30% lower than families where no one has a disability.   Parents of children with disabilities report a wide range of lost economic opportunities including not taking jobs, leaving the workforce, cutting back on work hours and turning down promotions.

According to an analysis of data from Canada, 68% of mothers were affected by these decisions as compared to 11% of fathers.  In the short term, cutting back or stopping workforce participation can cause families financial distress. In the long term, particularly in the United States, where health insurance, retirement plans and Social Security pay-outs are tied to work, these lost economic opportunities disproportionately affect women and can affect their economic well-being in their retirement years.

Is leave the answer?

Creating paid family leave policies is one way to address this problem.  Workers and caregivers consistently report that having paid leave would be beneficial. Studies show that paid leave policies are beneficial to employers because they reduce turnover rates, increase productivity and increase employee loyalty and morale .

Analyses of California’s paid family leave program found that it supported unpaid caregivers who were working to better balance work and care responsibilities.  Paid leave also encouraged unemployed caregivers to join the labour force, with a long-term increase in labour force participation of 14%.

Paying parents to provide disability-related support for their children with disabilities can also alleviate some of the economic impact of parenting children with disabilities.  In the United States, for example, children with more severe disabilities may qualify for long-term supports and services such as personal care assistance that is provided in the family home.  Some individual states in the United States allow parents to be paid for some of this care.  It addresses the shortage of direct support caregivers, recognises the expertise parents have related to their child’s needs and alleviates some of the financial burden of raising a child with disabilities (which ultimately reduces the need for more expensive out of home care).

Providing paid leave to parents can offset the indirect financial costs of raising children with disabilities.  Paid leave policies can also benefit employers and increase workforce participation leading to overall economic benefits. Policies allowing parents to be paid for providing disability-related supports acknowledge the value of the unpaid care provided by families of people with disabilities, and has the potential to alleviate the direct support workforce shortages. — Lynda Lahti Anderson

(Picture credit: Pexels)

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