Thanks to Sheryl Sandberg’s 2013 book “Lean In,” the long-term effects that off-ramping to care for a baby can have on a new mom’s career progress and earning potential have been widely discussed. But what happens when a child’s period of high needs extends far beyond infancy? Today one in 12 workers in the United States has a child with a disability, according to MassGeneral Hospital for Children. Thirty percent of parents of children with special needs quit their jobs or significantly cut back in order to provide care for their child, according to a survey conducted by the federal Maternal and Child Health Bureau. More than 40 percent of families with one or more special needs child report experiencing significant financial stress, says the Maternal and Child Health Journal. The combination of these circumstances leads some parents to turn to self-employment and entrepreneurship, either in addition to or as a replacement for traditional employment.
The period following a child being diagnosed with a disability may seem like a particularly stressful time to start a business, but in some ways it makes a lot of sense. There is always risk involved when you leave the establishment and strike out on your own — particularly if you rely on your job for health care benefits. But for parents of special-needs children, who may quickly use up sick days and vacation time caring for the child and then be fired when one too many crises occur, there are risks anyway. If your child has special needs and you are struggling to find a work-caregiver balance while staying on top of medical bills, becoming your own boss may be a solution. Here’s why.
Take Matters Into Your Own Hands
The Sweetwarter Spectum project in Sonoma, Calif., was started by the family of a young man with autism, who realized that even if their son lived with them for the rest of their lives, they still had to plan for his future when they were gone. So with the help of several other families, they created this unique residential facility for adults on the autism spectrum to live and thrive in long after their parents are capable of caring for them.
In my case, I saw a real need for more services and easier access to information for families living in rural and underserved areas, based on my own experience with my daughters. So I co-authored a book with the head of our therapy program, Dr. Kristen Byra, BCBA-D, called “Help! My Child Has Autism: A Parent's Guide to Start, Fund and Maintain an Evidence-Based Intervention,” to share what we have learned about funding and building home-based programs. But we kept running into moments where one of us said, “I wish someone would build an app that did this, or had a system like that.” If you need something that doesn't exist, you just might be the best person to build it. And so ABLE Interventions was born.
Make the Most of Limited Time
Caring for a disabled child can become a full-time job. When a child is diagnosed with autism, the family is suddenly hit with a full schedule of appointments, procedures and therapies. The gold standard level of ABA therapy alone is 25 to40 hours per week. Add to that speech therapy, occupational therapy, physical therapy, social skills groups, and when the child turns 3, special-needs preschool. This level of time commitment on the parent's part makes it difficult to maintain traditional employment. Some parents cut back to part time, but often one parent gives up work entirely. Working from home as a freelancer or entrepreneur can allow the caregiving parent to generate income on her own schedule while continuing to take care of her child.
Create a Sustainable Future for Loved Ones
For parents of typically developing children, there comes a time when they grow up and go out into the world, either to college or into the workforce, and ideally a large part of your financial commitment to them is done. In the case of children with disabilities, the time when they age out of school services can be even more difficult than when they were young. Adult disability services vary widely from state to state and city to city. While there are some fantastic vocational training programs that do help members of the disabled population to find employment in certain areas, there are also startling statistics that show a bleak picture. For example, it is reported that 91 percent of adults with autism are unemployed. In the face of this, some families are creating companies themselves where their child can be employed and their strengths can be utilized. Lori Ireland, founder of Extraordinary Ventures, is a shining example. With a strong base of support from other parents, she founded a company that could employ her child, and others like hers, so that they could enter the workforce and live a productive and fulfilling life.
Jen Turrell is a member of the DailyWorth Connect program. Read more about the program here.