New benefit offers education help to parents of special-needs children

Joanne Burke can’t count the number of hours she spent researching special-needs law and preparing for meetings with educators and therapists about her daughter Gabby’s individualized education plan. Gabby, eight, was born with spina bifida, a birth defect that happens in utero when a baby’s still-developing spinal column doesn’t close all the way. When she was four, Gabby was also diagnosed with a rare form of epilepsy, which caused steep cognitive regression. Today, Gabby primarily uses forearm crutches to get around and attends third grade at a public school.

It is families like Burke’s that led Adam Goldberg to launch myEdGPS, a company that helps parents of children with special needs map out an education plan for their child. It’s a program that can be offered as a standalone employee benefit, and it is also being offered through Bright Horizons, a provider of child care services as part of that company’s suite of employer offerings. The Bright Horizons program, Special and Exceptional Needs, powered by myEdGPS, will be exclusively offered to companies with more than 3,500 U.S. employees by College Coach, a division of Bright Horizons specializing in providing answers to education concerns.

Many employees – perhaps more than most employers realize – have children with special needs. Debra Schafer, founder and CEO of Education Navigation, a company that offers parents of special-needs children help navigating the school system, says estimates vary but that between 8% and 14% of an organization’s workforce is caring for a dependent with special needs. The Centers for Disease Control and Prevention, meanwhile, says that about one in six children in the U.S. have some type of developmental disability, including attention deficit hyperactivity disorder, autism, learning disabilities and other developmental delays.

Also see: Navigating through special-needs education

Yet, despite the prevalence of children with special needs, the level of support offered to working parents has not kept pace. Less than three in 10 families report they receive a support service through a public or private agency, including employers, according to a MetLife Center for Special Needs Planning report.

And nearly two-thirds (62%) of employees caring for dependents with special needs say their exceptional caregiving responsibilities have affected their work, according to the Boston College Center for Work & Family. Goldberg estimates working parents lose up to five hours a week running around to various doctor, therapist and teacher appointments, to say nothing of the hours they spend filling out paperwork, figuring out who’s paying for what and researching care, medical and education options.

Flexible working hours are likely the most important workplace benefit that allows parents of children with special needs remain productive. Indeed, Burke’s employer, an automotive parts supplier based in Michigan where Burke lives with her husband and Gabby, has been very supportive of her need for flexibility. They’ve offered Burke a flex-time schedule where she starts at 6:30 a.m. and leaves the office by 2:30 p.m. to collect Gabby from school. And, when she returned to work after Gabby was born, she was able to work from home on days when Gabby had multiple medical appointments.

Other benefits include telecommuting, leaves of absence, employee assistance program resource and referral services, emergency and backup dependent care, and even manager training about the issues facing employees who care for children with special needs – all can go a long way in helping employers support these workers. And, as competition for talent intensifies, offering these types of benefits can become an important way for employers to differentiate themselves and attract parents who are looking for these benefits.

Education benefits

When Gabby was ready to go to school, Burke spent countless hours attempting to figure out the family’s options. While she investigated sending Gabby to a private school, in the end, the private school could not handle Gabby’s multiple needs. Through the public school system, Gabby has access to physical and occupational therapy, as well as speech therapy.

“It's just a lot of juggling. It's almost like having two full-time jobs at once,” says Burke. “The case management aspect of it can be pretty heavy at times. It's not all the time, but if there's any sort of medical issue going on, it can take up a lot more time and effort to manage all of that at once.”

After years of providing private consulting services to parents who could afford to pay for it, Goldberg, who holds a masters’ degree in education with a concentration in assessment, realized that “we were turning away 95% of folks who couldn’t afford to pay for these types of private services,” he says. “This really was the manifestation of my burning desire to democratize the model and be able to scale it through technology so that we could have an impact on millions of children and their families out there.”

Goldberg likens myEdGPS to TurboTax for special education because when parents first enter the online system, they’re asked a series of questions, a virtual intake of sorts. Then, depending on how far long parents are in their journey, the system serves up a series of roadmaps designed to guide parents and give them the necessary information, depending on what their needs and goals are.

They system also includes a virtual binder that can be accessed on any mobile device to help manage and store all the documentation involved. There’s also a calendar feature, which Goldberg says is particularly useful since different states have different timelines for when certain documentation needs to be provided and to whom.

“Once the system knows your child is being educated in Ohio, for example, and you request an evaluation, the system knows to alert you that within X number of school or calendar days, based on Ohio regulations, that you should expect to hear a response back from the school and then it goes to the next step in the timeline,” he explains.

The system also includes a behavioral tracking journal for parents and a letter generator “so that you can get it right the first time when you’re requesting an evaluation from the school or an independent evaluation of the school, or requesting a team meeting to address an issue,” says Goldberg.

Bright Horizons is currently piloting the program with a handful of companies, says CEO David Lissy. It’s included in the company’s core offerings but employers can also customize the program to include in-person education onsite and/or live webinars.

And apart from helping employers with productivity issues, Goldberg says myEdGPS offers the opportunity for tangible savings on health care expenses.

“What most people don't know -- including parents, administrators, and especially employers -- is that the knee-jerk reaction is to go to the medical plan if you suspect something's going on with your child, without any knowledge that you can actually get some of these same exact services from a school,” he explains. “That's a federally mandated system. The two systems [health care and education] really don't talk to each other that well. What we're doing is we're helping empower these parents to be able to understand what their rights are and how to go about it, step by step, finding the right help in the right ways through schools.”

For example, an employee has a five-year-old child who may not be hitting certain developmental milestones. The parent’s first instinct is to take the child to the pediatrician, who then refers the child to a series of specialists. Each visit requires the parent to take time off work, the medical plan incurs costs and the employee may have co-pays to deal with.

“The reality is, at the very beginning you should also be requesting an evaluation through school, because it's free if you ask for it in the right way,” says Goldberg, adding that there’s a whole host of related services, including speech language therapy and some behavioral therapies, that are within the legal construct of the Individuals with Disabilities Education Act.

“All of this fundamentally is supposed to be free and in very many cases overlap with those medical services,” he says.

For Joanne Burke, who researched all of daughter Gabby’s educational and therapeutic needs herself, a service like myEdGPS would have been invaluable. “If I had access to a resource like this it would free up valuable time to address other issues,” she says. “The law is complex and learning how it affects our daughter as well as learning about accommodations and assistive technology is constantly in the back if my mind.”

Education care at work: West Pharmaceuticals Services

When West Pharmaceutical Services, a medical device company headquartered in Exton, Pennsylvania, surveyed employees at its corporate head office, it found that roughly 8% of the 400 employees at that location were interested in either receiving more information about special-needs education or receiving immediate help to navigate the school system for their special-needs child.

The company brought in Debra Schafer, CEO and founder of Education Navigation, a firm that helps parents advocate on behalf of their special-needs children. She calls her services "education care," and the benefits are designed to increase the engagement and productivity of employees with children in need of specialized support and/or education services in school.

"Employers understand the elder care arena very well. They don't understand, necessarily, the education arena and that it's typically 12-plus years of an employee's life cycle that they're dealing with these issues," says Schafer.

Consultants with Education Navigation will come in to organizations and conduct workshops, lunch-and-learns and webinars, as well as offer one-on-one consultations with employees. The firm's services are also available as a voluntary benefit.

West Pharmaceutical Services pays for up to three hours of services from Education Navigation as an employee benefit. It's money well-spent, says Bethany Barnes, HR benefits specialist.

"People are really appreciative, knowing our company wanted to help them," she says. "A lot of employees just didn't know where to go when they needed these types of services -- they were overwhelmed."

West Pharamceutical Services has since expanded access to Education Navigation's services to two of its other locations in Pennsylvania.