Tuesday, October 28, 2008

Workplace Disclosure and Children with Special Neeeds: A look at some research

Disclosure - my last post talked about how and when to inform people in the community about your child's disability. But what about people in the work place? Do you tell co-workers and Human Resources about your child's disability, and if so, when? Before you are hired? After? And how much do you share?

For those of us with less "traditional" employment, is our decision to work outside of the nine-to-five work world our way of dealing with the disclosure dilemma, by essentially avoiding it? How many of us work at home to optimize flexibility? And in doing so, are we letting potential employers off the hook?

Researchers at the Portland State University Research and Training Center on Family Support and Children's Mental Health have studied what they coin "Dilemmas of Disclosure" for both parents and human resource professionals. Their findings are summarized in the power point presentation: Caring for a Child with a Disability: Dilemmas of Disclosure for Parents and Human Resource Professionals.

This presentation includes some telling quotes from parents on the disclosure issue:

“Honesty with my employer. That has been the main
strategy and working very, very hard when life is
going well to make up for the times when I have to
be out from work.”

“I do try to be up front with selective people about
this. Some people I tell about my son’s emotional
disorder; to others I just say that my son has a chronic
illness that sometimes requires hospitalization.”

“All I’ve been able to do is explain to my employer
the reality of my life with an autistic child. Some have
understood and others have absolutely not!”

These Portland State researchers have also written a comprehensive article on the topic of workplace supports (and the shortage of them) for families who have children with special needs. This research in outlined in Disabilities and Work-Family Challenges: Parents Having Children with Special Health Care Needs on the Sloan Work and Family Research Network web site.

Fellow moms, please weigh in on this. If you are employed at a work place, how do you deal with the disclosure issue, along with the need for flexibility? Those of you with alternative work arrangements, how big a motivation is autonomy and flexibility? And for those moms who currently do not work "for pay" (because we ALL WORK) - would you be more willing or able to work if there were comprehensive protections and supports for employees who are parenting children with special needs?


Anonymous said...

I haven't had a chance to look at the research (and since I don't work out of the home), I can only tell you what my husband did.

When we were going through the diagnosis process, he did tell his boss, who was very understanding and concerned (this was before, it was such a widely diagnosed condition). She was concerned not only for him, but also for me (which was nice).

Obviously, when he changed offices and moved down here, the whole office knows. In fact, we wouldn't have moved if we didn't have the services available that we do here. There was also another partner (in his current office, not the one he moved into) who has a daughter with Down's, so he has been sort of a mentor to my husband (how to balance a special needs child, work, etc).

Overall, the office is understanding. They know we can't do certain things and that we have a unique situation. I think it is a different culture than even five and a half years ago, someone always knows someone else with autism. We even did a fundraiser for the autism walk that we did at the office (they had a 'dress down' day and donated $5 to dress down).

I think it depends on your situation (ie. are you the stay at home spouse or working) and how 'flexible' your schedule is.


Pam said...

Hi, When my son was small I shared more about him, but looking back, it seems like all the employees who had small children talked about them at least some. Now I don't often share, partly, because if I get into a long discussion it slows my pace and the frustrating thing is, care is hard to get for young adults and so I have to use my time efficiently. I do get sad about missing out on lunches out with other staff which once in my work life I did. Now it is mostly work home work home over and over. Pam

thailandchani said...

Even though I am not a mom, I'll weigh in on this one. When it comes to disclosing anything in a workplace setting, I'd definitely keep it to "name, rank and serial number". It's not a friendly, family environment where anyone should feel safe disclosing anything that could be ultimately used against them.

And, no, I'm not insanely paranoid. I've just been through enough and have seen others go through enough that I believe personal disclosures should be saved for friends and family.


Carol said...

Katie, Dan's work place also knows about Sayer and I think it helps Dan. Plus, the coworkers have a monthly hike and Dan brings Sayer. That gives them a chance to see him and know him a bit. The nice thing is the hikers are friendly and look out for Sayer, so Dan feels supported.

Carol said...

I'm not sure I could keep that much of my family life out of the work place, thailandchani. But I have had work situations where people have shared too much and too often, and that can be really uncomfortable.