Parents with special needs children in the United States are facing significant challenges owing to a lack of adequate childcare support, leading to career disruptions and even pushing some out of work.
In the US, parents of children with special needs pay for physical, occupational, and behavioral therapy, and can apply for Supplemental Security Income (SSI), which is federal income support. Without this support, parents must shoulder the burden of expensive services. This severely impacts children from lower-income households.
Additionally, appointments for their children often conflict with standard company work hours. Parents with special needs children, therefore, are caught in a hamster-on-a-wheel situation where they require high-paying occupations for essential services yet are unable to work as frequently as they would want.
Lisa Hernandez, Esq., an education and employment attorney at Smith Eibeler in New Jersey says that the services to help parents work and balance the demands of caring for a kid with special needs depends on the age of the child.
In New Jersey, if a child is disabled enough, the child may qualify for PerformCare, which provides a family-centered, community-focused single point of entry for the state’s eligible children and families, in order to obtain available behavioral health and developmental disability services.
Her son has autism, developmental disabilities, and verbal impairment, which impacts his level of independence. Yet, he was not disabled enough to get services, Hernandez says.
“The state will provide some respite care for a certain number of hours to some families. Some people have used it to help with their scheduling when they cannot be in more than one place at a time. It doesn’t help a lot of people,” Hernandez says, adding: “Ideally, a family will not need to supplement what is provided by public schools, but that doesn’t always work out well, especially for children with intellectual disabilities… I don’t know of any resources directly towards just helping parents balance the schedule of getting stuff for their kids versus just being at work.”
While Hernandez was working and in school to pursue a PhD, her son was born prematurely. When he came home from the hospital, she had to leave the PhD program and quit her job, just so she could take him to appointments. Her son had more medical complications and too many appointments with specialists and doctors for Hernandez to be able to work.
“When someone has to do that (leave work to care for a child with special needs) and wants to get back into the workforce, you’ve lost tons of earning potential and promotional opportunities. You are 10 and 15 years behind where you would have been. If you are unable to pay to outsource all of your childcare to another adult, so [that] you can work, there is no other option,” Hernandez adds.
Dan Harris, CEO and founder of London-based Neurodiversity in Business (NiB) – an industry forum that seeks to improve the inclusion of neurodivergent people in the workforce, says that unlike the US, in the United Kingdom, the local authority has an obligation to provide any unmet needs and social services to children with special needs.
Harris notes that parents, who must balance their work responsibilities with the care involved with raising a special needs child, should be transparent with their employer, and that proactively offering flexibility is the biggest way that parents of special needs children would be able to work.
“There is a socioeconomic point… for (many) others if in retail or manufacturing, you don’t have that flexibility. There needs to be a recognition of that,” he underlines.
The issue of supporting a special needs child with many appointments has also affected Chakshu Saharan, a volunteer for NiB.
For children with milder needs, they are often overlooked.
Saharan said that she was working full-time. In the last five years, her son was diagnosed at the age of five with autism.
“It was very hard. I want to go back to work, but I can’t. I need that flexibility. Anytime I’m not around if I have to pick up my other son from school, or if there is a disturbance in his routine, he’s not happy. I’m again in quite a dilemma. I want to go back and find my career, but I am grounded by needs,” she underscores.
Some households also often find it challenging to arrange child care due to low-wage occupations, which include little notice for work hours, frequently changing schedules, and last-minute shift changes.