There are over 20 million families in the United States who have a loved one with special needs, and that number is growing. For example, the number of reported cases of autism (one of the most common disorders) has doubled in the last five years. Other conditions like Down syndrome, Fragile X, and cerebral palsy are also on the rise.
Families with a child or loved one with special needs know firsthand how difficult it can be to find the right care arrangements. On average, they pay more for care, take longer to find providers, and experience twice the amount of care crises each year.
We founded the State of Care Index to shed light on the difficulties special needs families face. In our most recent report, we’ve highlighted the struggles these parents go through while searching for care.
One Care.com member told us, “The biggest challenge is the cost. We rely on one income. Babysitters for children with special needs cost as much as my husband’s wage. We really never have a babysitter because of it.”
The State of Care Index found that families with children with special needs pay 45% more per hour of child care. That’s a huge burden. Families, on average, pay $12,445 a year for child care (that’s 14 percent of their annual income), but those with children with special needs often pay more. This puts stress on the family budget and adds even more pressure on parents to provide.
Special Needs—Special Training
Parents of children with special needs desperately want them to be cared for by trained, experienced professionals. In our survey for the State of Care Index, we asked parents to rank the top three factors they look for when selecting caregivers. We found that “special needs training” ranks first, even about other criteria like cost or First Aid training. And yet, it can be very difficult for parents to find care providers who have this kind of specialized training.
“Parents of special needs children face greater day care obstacles because a lot of day cares do not have staff with proper training,” said one parent we surveyed.
Another parent echoes the sentiment, “The biggest challenge is finding someone who is willing and competent to provide care for two children with special needs. We have never been successful in maintaining placements for my kids in child care centers or child care in someone else’s home due to my children’s behaviors and high needs. Child care staffers are not well-trained although they are well-intentioned."
Work Impact—It Takes Time
In the July edition of the State of Care Index, we focused on the overall cost of care. In the November edition of the State of Care Index, we asked parents to talk about the impact their caregiving responsibilities have on their jobs and careers.
Not surprisingly, special needs families reported caregiving had a great impact on their work. On average, they experienced 11 care crises each year—twice the amount of other families. Overwhelmingly, parents solved these care crises (where a child fell ill or acted out) by either adjusting their work schedules or missing work altogether.
We also discovered that parents of children with special needs take more time to find care providers. Nearly 40 percent of these parents take more than 12 hours to research and interview new babysitters, nannies, or child care centers.
“The biggest challenge is the amount of time it takes to interview, select, and hire a caregiver,” said one parent.
It was sad to hear (and completely understandable), but 64 percent of parents in special needs families believed their caregiving responsibilities had negatively impacted their work performance.
When I started Care.com, I wanted to make it easy for families to connect with the caregivers they need. We launched our special needs service almost exactly one year ago. I’m happy to say today that we’re currently helping tens of thousands of families across the country find the often-elusive care they need for their children and relatives with special needs.
If you’re a parent of a child with special needs, I’d love to hear about the challenges your family faces when finding care. What advice do you have for other parents in similar situations? Leave a comment to share with the Care.com community.