Guest Blogger, Linda Roundtree–“Fit” and Parents of Kids with Special Needs

Note from Cali: Please welcome Linda Roundtree, of Roundtree Consulting, as our first guest blogger! With her years of experience and passion for this field, I am honored to have her share her insights. Thanks, Linda!

Every year Working Mother magazine publishes a list of the “100 Best Companies for Working Mothers.” This year they added a question to their application about workplace programs and benefits to support employees caring for children with special needs. A great move considering these national trends:

• 1 in 5 households with children includes a child with special needs
• 13 percent of children have a disability
• Nearly 20 percent of children experience symptoms of a mental health disorder over the course of a year; 5 percent are considered to have serious emotional disorders
• 1 in 12 employees has a child with special needs

By broadening their Best Companies application, Working Mother has further challenged employers to assess needs, seek out best practices, and provide additional resources to employed parents of children with special needs.

But what are the real issues faced by these parents? Don’t all parents have the same challenges? Perhaps what most distinguishes parents of kids with special needs the most from parents of typically developing kids is the intensity and complexity of work and life arrangements they make on a daily basis – arrangements that often get more complex as the years go by. I know about this first hand.

My 8-year-old son, Alex, has Down syndrome. When he was born he presented a complex variety of life-threatening medical problems. During his first years of life Alex was admitted to the hospital more than 20 times. Over the years, my husband and I have adjusted our personal and work lives to meet his emergent and evolving needs. I’ve changed jobs, teleworked from hospital rooms, turned down a promotion, curtailed travel, shifted work hours daily, and started my own business – all in the pursuit of finding the best work and life fit.

Others have far greater challenges. One study found that 48% of parents had to quit work altogether to care for a child with special needs and 27% of parents had their employment terminated because of work disruptions due to care responsibilities.

The issues behind these employment outcomes are complex and time consuming. In addition to dealing with medical concerns, parents struggle to obtain information about early intervention programs, fight for healthcare coverage, secure appropriate child care, advocate for their child’s rights within the school system, and make legal and financial decisions regarding things like guardianships and special needs trusts. For single parents and lower-wage workers, the struggle is compounded.

So what can employers do to help? Plenty of very simple things:
• Visit www.nichcy.org and www.massgeneral.org/ebs for helpful resources. Add links to these sites from your intranet.

• Survey employees to find out how many have children with special health care needs or disabilities. Or add a question to your annual employee opinion survey. Ask what types of resources or support would be helpful.

• Partner with your Employee Assistance Program (EAP) to provide easy access to resources and referrals targeted to children with special needs.

• Publish an article in your employee newsletter about available support at your company – perhaps share an employee’s personal story.

• Include information on the prevalence of children with special needs in new supervisor training. Create talking points for managers about how to respond when employees disclose that they have a child with special needs and how to help them access corporate resources.

• Offer flexible options such as reduced work hours, opportunities to scale back hours and/or responsibilities for a period of time and then ramp back up, ongoing schedule flexibility, spur of the moment flexibility or time off, ad hoc teleworking, and paid sick time to care for children.

• Provide Web-based tools to help employees compare healthcare plan options including employee contributions, co-pays, deductibles, and coverage limits.

• Ensure comprehensive healthcare that includes coverage for:
 Developmental therapies including physical, occupational and speech (most plans cover only rehabilitative therapies)
 Mental health disorders
 Medication/anesthesia for routine dental exams (some children with special needs require sedation)
 Adult children with disabilities

• Offer seminars in the workplace that provide information and resources for parents on topics such as accessing federal and state programs, setting up a specials needs trust and preparing for the future, and understanding your child’s rights in the public school system (www.nichcy.org provides state-by-state resource lists).

• Offer opportunities for parent networking groups to organize and meet at company locations. Expand an existing employee affinity group for people with disabilities to include parents of children with disabilities.

What experiences do you have providing support for employee parents of kids with special needs? Do you have any best practices to share? What other ideas do you have about ways to support parents? We’re interested in your thoughts.