Work-Family Issues for Employed Parents of Children with Disabilities
Judi Casey May 14th, 2008
Last week, the Sloan Network hosted its annual panel meeting on the topic of “Work-Family Issues for Employed Parents of Children with Disabilities.” Every year we convene a small invitation-only event to promote active discussion about important work-family issues from diverse disciplinary perspectives. Although considerable attention has been paid to the work-family issues of working parents, the unique needs of parents of children with disabilities has not received significant attention. Did you know that 13.9% of children under age 18, approximately 10.2 million children in the US, have special health care needs (Dept. of Health and Human Services, 2008)?
Twenty attendees from the US and Canada participated in the panel meeting. Conversations focused on the following areas:
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What research exists about the unique work-family needs for working parents of children with disabilities? What additional research is needed to inform us and move our understanding forward?
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What legislation has been created to address the needs of working parents with disabled children?
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What have workplaces done to respond to employees with disabled children? What best practices exist?
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What are the next steps for research, organizations and policy? Have could we move forward to ultimately provide more supports for these families?
We had many interesting discussions about these issues, and are currently working on an executive summary of the meeting. I’ll be sure to share some of our thoughts in the upcoming months. We will also add resources to the Sloan Network that focus on this issue, including a Work and Family Encyclopedia entry and a Topic Page. If you have any input to share about the unique work and family needs for employed parents with children with disabilities or specific resources to share, please let us know.
no doubt its really hard to fulfill both the responsibilities at the same time as both want full concentration. There should be some law regarding this issue which will give the parents of disabled childs some relaxation.
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Thank you for the focus on this issue. I always say that being a parent of children with disabilities is like being in a special club that you did not know you would join and cannot leave. It is a different task that impacts each aspect of a parent’s life. How workplaces can help in a positive way is a good question.
[...] Sloan Network recently hosted a panel meeting on Work-Family Issues for Employed Parents of Children with Disabilities. Today, we distributed a [...]
This is such an under reported issue - parents of children with special needs have two and three full time jobs depending on the nature of the child’s disability. If it is health related that’s one - special education and non compliance is number 2 and one’s “regular” job is number 3.
While the EEOC is starting to recognized care taking responsbility as a addendum to gender and disability discrimination - what is really needed is a statute which protects parents of children with disabilities from discrimination and adverse work actions because of his/her child.
Parents of kids with special needs are acutely aware of how others perceive any accommodation given and often work harder because of it. Unfortunately, managers often see this as “child care issues” and abuse of sick leave. I work for a state civil rights agency (of all places) and have faced harrassment because of my son’s needs because of a change in administration. This isn’t Johnny has strep or Susie has the flu - my son has serious medical issues which often require hospitalization - FMLA is great - we have extended benefits pursuant to a union contract - but its still un paid. As a single parent this is not acceptable.
I would love to contribute both as a parent and an attorney.
I’m out of work on leave now for my child who has a disability. The leave is unpaid. I’m a single parent and I need help ASAP! This is my second unpaid leave this year. I don’t know what to do.I can’t even go to work like I need to. If you have any resources, please help. I feel like I’m going to explode!
Thank you for your note, Chanel. We hear your concern and the urgency of your message. We are developing a Topic Page “Parents Caring for Children with Disabilities” to raise awareness, dialogue, and state and work-level policy changes on this very issue. The strain of caring for a child with a disability, especially within an employment situation that might not adequately accommodate family needs, is a common yet hidden problem that negatively effects both employment and poverty rates. The Topic Page will be available later this month and will offer readings, links, statistics, and other information related to this issue.
There are a couple of resources you might turn to right now. The Federation for Children with Special Needs is a center for parents and parent organizations working together on behalf of children with special needs and their families. They operate a database, which should assist you in connecting to resources, agencies, parent groups, and advocates in your community. Family Voices is another national organization founded to improve family-centered health care for children and youth with disabilities and chronic conditions. We suggest that you visit this site and then select your state to find the contact information for the chapter nearest to you. We wish you well in finding the support you need, and thanks again for contacting the Sloan Network.
[...] Sloan Work and Family Research Network today released an action plan generated from a panel meeting in May on Work-Family Issues for Employed Parents of Children with Disabilities. The Sloan Network hosts [...]
I am a supervisor for an agency in my state under the the Division of Vocational Rehab. I have three disabled, special needs children and you would think that of all agencies, mine would be better versed in the needs of parents with special children. I find it impossible to take any vacations like most people do because I don’t have the leave built up. I end up using both my annual and sick leave as I earn it just to deal with the chaos that comes up on a regular basis. I am being harrassed by my supervisor. She is saying “you really need to build up your leave hours.” “I am beginning to sense some resentment from the other supervisors because you are not here a lot.” I am appalled! When I am here I work harder, take more assignments, do job assignments which are not mine, cover for those fortunate people who can build up leave when they are gone for a week or more at a time, etc, etc, etc. In the 7.5 years here, I have worked every day around Christmas while hte rest of the agency is gone, with the exception of last year when I was so sick I couldn’t even have my own Christmas dinner. I NEVER submit my timesheet with time off without leave- in other words, all time used is time earned. Addtionally, in the 7.5 years here, I have had to go on FMLA twice just to cover the therapy apts my children have required. My childrens disabilities are well documented and the people in charge are very well aware of the cirsumstances….yet this supervisor says “I know you have valid reasons for not being here, but you really need to be here.” My beef is that I AM here a lot more than I’m not and the leave I earn and use to take care of my family issues should be MY leave to use as I see fit. I don’t see how someone can acuse me of abuse of leave if I have earned the leave to begin with. If I could have all the chaos and problems that arrise just wait until one week of the year, or two or three, and use it all at one time, no one would notice…but the problem is the needs DON’T WAIT. I am a professional woman who has a masters degree and who is trying very hard to NOT go on welfare….to make my own way and take care of my own kids. The problem is that there is a predjudice and ignorace in the workplace- that assumes that we asked for this (disabled kids) somehow. What a crock of crap. Who would ask for this? Isn’t it enough to bear that we have this problem to begin with? There really needs to be a FEDERAL mandate which not only protects working parents of disabled kids from harrassment and discriminitation, but also rewards them!
Why should parents of disabled children get special treatment, alot of single parents struggle. I feel like the disabled child should get all the benefits they deserve because they are unable and go out and do for themselves but as a parent of any child it always a challenge and parents of disabled people have to learn that you have to deal with the ups and downs and make it work. Whether your child has special needs or not you still have to do what you have to do like the rest of us without special treatment.
Nancy, I think that a good supervisor/manager will offer support to their employees for whatever issue or situation they are dealing with - elder care, divorce, death of a loved one, cancer treatment or caring for children with a disability. It is the job of the supervisor to provide an environment where an employee can be successful at work which includes resources, training, advice, feedback etc. As part of that task, I think that the supervisor should inquire about whether there is anything that they can do to help the employee to do their job as well as if there is anything that they can do to make their life easier, while maintaining their productivity. This is not providing “special treatment” but rather helping an employee to do their job well so they can optimally contribute to their organization.
This can be a bit tricky for parents caring for children with disabilities for 2 reason. First, there are a lot of myths and misconceptions about what it can mean to care for a child with a disability. The demands can result in financial difficulties (e.g., unreimbursed medical costs, inability to find caregivers), exiting the workforce and considerable stress on the parents and siblings. In addition, parents may be unwilling to disclose their family situation as they can face a “dual stigma” (see Rosenzweig and Brennan, 2008) where they are judged to be inadequate parents and poor workers due to their family situation. For more information about these unique challenges, please see our topic page at: http://wfnetwork.bc.edu/topic.php?id=40 or our December 2008 Network News at: http://wfnetwork.bc.edu/The_Network_News/54/The_Network_News_Interview54.pdf
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I think that for many the issues of extended leave for hospitalizations and such is a huge issues….but for many many more it is the numerous doctors appts, IEP’s, therapies and so on. Managers are supportive to a point but when hit with upset co-workers who don’t understand or think that it is fair (even though you are more than pulling your weight at work…and have everything covered). Faced with the comments and frustration of co-workers seems to be a large issue - how do they handle this fairly - how do they keep morale up in the office? Keep those co-workers from getting frustrated and angry when the parent of a child with special needs has to come in late or leave early at least once a week or every other week. Then on top of it you add in the illnesses of any of their children or themselves.
It is very very difficult! It is hard on the parent trying to juggle it all and trying not to seem “special or different”, trying to keep their job…trying to not miss too much time without pay. So the parent is often faced with the stress of being laid off or fired…there are no protections that I can find to help us…I am crunching numbers to see if I can make it by “going into the system”…because I am at a point where I am continually loosing pay (like many other parents out there) for time off, struggling to meet the basic bills…and in my mind almost neglecting my responsibilites as a parent….do I postpone this appt or that appt? Can I miss work for this or that? I want to work … and be successful but I have been bypassed now for promotions…and even demoted once (without a pay cut) due to the outlook of others on the need to care for my special child ….
Thank you for your comment, Sue. You articulated well the struggle that is faced by many working parents caring for children with disabilities. I can see how hard it would be to prioritize the work-family juggle when there are unexpected illnesses and competing demands. And then on top of that, to have co-workers who are less than supportive of your situation. Several other comments from this blog post echo your concerns.
We agree that this is an important issue and that awareness and information is critical. Since this post, I wrote about our year long efforts to create a dialogue on this issue and to provide resources at:
http://wfnetwork.bc.edu/blog/wrapping-up-the-2008-panel-meeting-on-work-family-issues-for-employed-parents-of-children-with-disabilities
I hope they are useful to you.
As the parent of a child with special needs, I know the demands of raising a special needs child is very different from raising a child without these needs. For example, cleaning poo off the walls and rugs for four years, talking with insurance companies for hours a day, meeting with schools just to get the teacher to talk to my son, worrying about what happened at school when my son can’t talk and the teachers don’t tell me he’s been hit, bribing the crossing guard with cookies to find out what is going on at school, explaining to my son why the boy across the street won’t play with him and why his mom, an elementary school principal, shut the shade when he tried to talk to this boy who is the same age, being hit and slapped and kicked when he is sick, watching untrained staff at the doctors office yell at my son when has waited for an hour for an appt., watching uneducated coaches tell me son to either sit and watch or just go in, hearing that no one wants to be with our family because they’re afraid of saying the wrong thing. There are many many moments of joy. I just felt the need to explain some differences that do, in fact, merit respect and understanding.
Other differences with raising special needs children are waiting for results of EEGs, finding a dentist, a barber, a doctor, and other professionals who “get” my son, finding, training, and keeping babysitters that are not pitying my son or afraid of him, keeping up with expenses like speech therapy, occupational therapy, social work, physical therapy, special swings, locking the house from the inside, fences around the yard, dealing with police on a regular basis when we moved into our new house, being unable to go to the gym, the home depot, grocery store, anywhere that is too loud when he was young, driving an hour each way, every day for a year to check out his new $250 a day, private pay school, living in a townhouse across from this school until we sell our house because my back can’t handle the 4 hour daily drive, being yelled at and stared at in public so much that i don’t even notice it anymore, i could go on forever. Special needs moms are not the same and can not be compared to anyone.
I am a single mother of a special needs child. with intensive needs. I live in Vermont. I am pleased with level of funding available to support my son’s special needs but it does not change the challenge of earning a living with a child like this. There is one solution that could help. Parents who can be accountable should be allowed to be there own child’s paid care provider. I am aware that some states are now allowing families to use personal care attendant money and respite money to pay themselves if they want to provide the care in lieu of outside help. This needs to become a national option.
I currently make much of my income working for other families and their special needs children providing care while my state pays someone else to care for my child. I want to care for my child who is so severely disabled. When I am with him he has a special security and a voice no one else can give him. I protect him and I teach with the motivation that only a parent has. I am trying so hard to find a way to make this happen. Does anyone have any information that could help me?
I need to add that the single parent who is struggling only needs to live with a child like mine for a short period of time to realize the extreme extra challenge of having such a child. It is not comparable to caring for typical children.
Kathleen, there is a pilot program in Vermont which allows for the hiring of friends and some family members. Although the program does not allow parents to be the hired worker for children under 18, it does provide you with more options including the ability to purchases needed goods and services to assist with the care of your child. The program in VT is called C3. Additional information is available online at http://www.ddas.vermont.gov/ddas-programs/programs-cpcs-default-page. For general information, contact the Children’s Personal Care Program at 888-268-4860. TTY: 866-410-5781, option 1, then enter 36255.
A very challenging issue. Disabled children can be very expensive to care for, which can in turn create more of a need for employment. There is clearly a lack of resources out there for parents of children with special needs, regardless of whether such resources originate with an employer.
I can also see how some parents and non-parents would take issue with their employer providing a disproportionate amount of benefits to certain families. Such a viewpoint may seem cold-hearted–a bit of compassion is always nice–though in issues of policy things get sticky when one focuses on both micro and macro implications.
Can workplace and family ever be completely compatible, or does it always come down to making choices and setting priorities? Hard to say, though it appears there is wiggle room for both.
NANCY, I CHALLENGE YOU ANY TIME TO TRY TO LIVE “NORMALLY” WITH A CHILD WITH A DISABILITY, ESPECIALLY A SEVERE ONE.YOU WOULD FEEL LIKE YOU DESERVE AN AWARD AS WELL. THERE ARE LAWS TO PROTECT PEOPLE WITH DISABILITIES IN THE WORK PLACE, BUT NOT PARENTS OF CHILDREN WITH DISABILITIES. THAT I DON’T UNDERSTAND. CURRENTLEY, MY WORK IS SWICTHING THE WAY SCHEDULING IS DONE. BASED ON YOUR AVAILABILITY, THERE ARE TIME SLOTS. IF YOU DO NOT FIT INTO A TIME SLOT, YOU DON’T GET ANY HOURS. FOR 4 & A HALF YEARS I’VE WORKED 7AM-3PM, WHICH MY FAMILY HAS SUPPORTED CHILD CARE FOR ME BECAUSE NO ONE PAYS FOR CHILD CARE, ONLY RESPIT CARE(NOT INTENDED FOR WORK).NOW, I MAY ONLY RECIEVE 16 HOURS IF I AM LUCKY.I AM A VALUABLE PLAYER IN MY DEPT., BUT I FEEL NOW LIKE I AM EXPENDABLE.I SHOULDN’T HAVE TO FEEL THAT WAY.
These comments are very resourceful for me. I am currently a business owner in New Orleans with a 2 year daughter looking for a preschool for my child, who does not have a disability, its hard. So, I’ve decided with the help of my sister and bestfriend to open a preschool. The best part is Its going to be an inclusive preschool focused on children with disabilities(mild to moderate disabilities). It was hard for me so I know it is hard for someone with a child with a disability to find a preschool. Inclusion teaches children and adults some great life lessons in accepting others and ourselves as unique individuals with unique strengths and needs. Another one of the benefits of inclusive child care is increased sensitivity toward individual differences. Inclusion preschool are definitly need. I want to make a difference!!!!! it not an easy job!!!!
What a wonderful idea! I am thrilled to learn that you are opening an inclusive pre-school. Please keep us posted on your progress and some of your successes and challenges.