Ellen M. is a 47-year-old single mom whose 4-year-old son is diagnosed with pervasive development disorder not otherwise specified, a disorder on the autism spectrum.
While he's very verbal, he sometimes struggles with expressing his needs. He has behavioral issues and several other medical issues such as extreme far-sightedness and gastrointestinal problems.
Ellen works full-time in a public sector job she's held for 25 years. Her son's numerous medical and school appointments mean she's away from work a lot, something her colleagues struggle with - even though she's earned the time off and is always accessible by email and phone. Because her son looks physically normal, her co-workers don't understand why she has to spend so much time out of the office. She uses her sick days and other earned time off when she has to shuttle her son to and from various appointments.
Fortunately, she has a family-oriented supervisor who understands and accommodates her needs, but she says she sometimes gets flack from her co-workers who tell her, "You're never here."
According to Centers for Disease Control and Prevention estimates, an average of one in 110 children in the U.S. has an autism spectrum disorder, or ASD. ASDs are reported in all racial, ethnic and socioeconomic groups, yet are, on average, four to five times more likely to occur in boys than in girls.
When a child is diagnosed with an ASD or attention-deficit disorder or attention-deficit-hyperactive disorder it falls on parents to deal with the fallout and advocate on their child's behalf.
It requires a lot of time and energy. And for working parents, such a diagnosis means they might be less productive at work. They're worried about their child or they're having to leave early to get the child at school because of a behavioral incident, or they're away from work because they're ferrying their child to medical appointments, which often occur during business hours.
"It's a new reality when your child is diagnosed and you're expected to advocate on their behalf," says Ellen. "It's very difficult."
Helping people navigate the educational needs of a child diagnosed with special needs - everything from autism to ADD and ADHD - is one of the reasons Debra Schaefer founded Education Navigation, a company that helps parents advocate on behalf of their autistic children.
She calls her services "education care" and it's a voluntary benefit designed to increase the engagement and productivity of employees with children in need of specialized support and/or education services in school.
Her goal is to increase the competence and confidence of parents so they're able to effectively advocate for their children from preschool through college.
As a former HR director, Schaefer has a keen understanding of the challenges employees face when juggling work responsibilities and children, especially ones with special needs.
She saw a void in the market and started coaching parents in a private practice about special education, working with them nationwide on a variety of education issues - everything from an early intervention with a child newly diagnosed with autism to a high school student diagnosed with ADHD and dyslexia transitioning to college.
Schaefer sees education care, much like child care and elder care, as another benefit employers can offer that will help maintain their competitive edge.
"It became apparent that one of the ways we can help employers help their employees is by driving these services into corporations as an employee benefit," she says.
Education Navigation will survey organizations to give HR and CEOs an idea of the numbers of employees who are either directly affected by autism and related disorders or who simply want to learn more about the topic.
At InterDigital Communications, a 325-employee organization based in King of Prussia, Penn., a voluntary, confidential survey by Education Navigation found that about 11% of employees at the wireless technology company had children or grandchildren with special needs.
"I knew of a couple of employees who had children with special needs but on the whole, most employees don't mention it to their employer unless they really need help with something," says Sharon Vernot, senior manager, payroll and benefits with InterDigital.
Education Navigation offered a voluntary lunch 'n' learn session to interested employees at InterDigital.
The program was very well received, says Vernot, with between 30 and 50 employees attending the session, which was made available via video conference to the company's New York office.
One employee even asked if she could send her husband to the session since she was travelling at the time.
Another attended because her neighbor has a child with special needs, while another employee went because of her nephew.
Many employees might not feel comfortable talking about their special-needs children for fear of discrimination, but Vernot believes that offering the session "makes us proactive. I think it makes us a good employer that we're even willing to recognize it and not push it under the rug like it doesn't exist."
Ellen says she would love for her employer to offer something like Education Navigation, if only for the simple fact that it might help educate her co-workers.
"People are ignorant about the amount of time I have to be out of the office," she says. "It would be beneficial to the company because when you have a happy workforce, you have a productive workforce."
In addition to lunch 'n' learn sessions, which can be tailored to specific topics based on the survey results, Education Navigation can provide what it calls onsite navigator services.
Specialists can visit the worksite a half-day or full day per month and employees can schedule appointments with them to go over any issues and develop an action plan. The company can also coordinate email, phone or Skype sessions for employees during evenings and weekends.
Education Navigation will also offer assistance in setting up employee support groups. Schaefer says that after lunch 'n' learns, employees are often shocked to discover how many of their colleagues are dealing with special-needs children and want to create some kind of support group.
The company will also set up voluntary benefit packages whereby employees can purchase a certain number of support hours from Education Navigation with a preferred provider rate.
And while employee assistance programs do a good job of providing employees with elder care, child care and even education care resources, they may lack the navigational aspect that working parents require.
"Many EAPs do address issues related to special education needs or special needs," says Schaefer. "Yet, for parents of children in special education there's the need for individualized, targeted support and navigational assistance - more so than perhaps in other areas where general information might be helpful," she adds.
For example, to qualify for special education a child must have an individualized education plan from the school district.
These IEP documents can be lengthy, full of jargon and overwhelming for parents. Or, a parent is asked to attend meeting to try to have their newly diagnosed autistic child deemed eligible for special education, but the parent is unsure how to prepare for the meeting.
"You can see how it can become a crisis situation very quickly," says Schaefer. "Employers have the ability to provide employees with supports and services to help."
Types of ASDs
There are three different types of autism spectrum disorders:
1) Autistic disorder (also called "classic" autism.) This is what most people think of when hearing the word "autism." People with autistic disorder usually have significant language delays, social and communication challenges, and unusual behaviors and interests. Many people with autistic disorder also have intellectual disability.
2) Asperger syndrome. People with Asperger syndrome usually have some milder symptoms of autistic disorder. They might have social challenges and unusual behaviors and interests. However, they typically do not have problems with language or intellectual disability.
3) Pervasive developmental disorder - not otherwise specified (also called "atypical" autism.) People who meet some of the criteria for autistic disorder or Asperger syndrome, but not all, may be diagnosed with PDD-NOS. People with PDD-NOS usually have fewer and milder symptoms than those with autistic disorder. The symptoms might cause only social and communication challenges.
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