There are nearly 17 million unpaid caregivers of children with special needs in the United States, many of whom say they have no choice but to provide an average of 30 hours per week of care, a national study of caregivers finds.
Caregivers of children with special needs tend to be women with an average age of 40.6 who take care of a child experiencing autism, mental or emotional illness, Down syndrome, developmental delays, asthma, attention deficit disorder or other medical conditions, according to the report Caregiving in the U.S. 2009 from the National Alliance for Caregiving.
Nearly half of these caregivers say they have no choice about providing the care, which often includes overseeing the child’s condition, helping others know how to deal with the child, advocacy, administering treatment or therapy, providing medication, handling financial issues, monitoring a special diet, arranging services or assisting with daily living skills like getting dressed or bathing.
Most caregivers are parents who are assisting a child age 10 to 17. Caregivers are most likely to be women, about half of whom are married.
Those with learning disabilities and educational issues are most likely to need the assistance of a caregiver, followed by those with emotional or mental health problems and individuals with physical conditions. Nearly 60 percent of kids who need the assistance of a caregiver are boys.
On average caregivers are on duty 29.7 hours per week, but a quarter of caregivers say they provide over 41 hours per week of care. As a result, 60 percent of caregivers say they don’t spend as much time with family and friends. They also report experiencing financial difficulties.
All this work is taking its toll, with caregivers of kids reporting that they are in fair or poor health at twice the rate of other adults.
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Is the not present divorced parent asked to help cover the cost/ time of support for children with special needs?
and isn’t there prenatal testing so parents can make (granted very hard) choices about whether to have a disabled child or not ?
Maybe there should be more information on the real costs, not only money, available to pregnant parents?
I’m not saying don’t take care of all who are here, but i am saying choices and considerations should be clear.
And I am saying religious organizations who, surprisingly, offer the least aide to those with disability, child through adult, while encouraging the births should step up to the plate.
I enjoy caring for my child. Although challenging at times, I find it extremely worthwhile and a priority in my life. My husband and I are a team. We do not view this as a burden but a blessing. It does take a lot of planning, communication and creativity to be caregivers/ parents for a child with special needs. We are ensuring that we do not burn out and are in it for the long haul by taking care of ourselves too.
It is very financially draining and time consuming. You have to plan,schedule,anticipate, budget and make choices every day that are unique to your situation. Our life has changed dramatically. In some ways it has gotten extremely complicated and in others very simple. Through it all love, faith and respect have persevered. We are committed to our child’s care and get a sense of wonder I cannot describe when our child achieves something others would probably take for granted. Our child is valued and loved. I am lucky to have a Church Community that is just as in awe of what our child’s accomplishments are as my husband and I are. God Bless.
I don’t understand the findings of this study.
The study says,
“[caregivers] provide an average of 30 hours per week of care…Most caregivers are parents who are assisting a child age 10 to 17.”
But, a parent of any child ages 10-17 is going to spend considerable time taking care of that child. It’s no secret that we special parents provide a much more intensive level of care and that we spend more actual time directly on our children than those who have kids who pretty much take care of their own hygiene, feeding, and general daily activities.
And it’s good to see studies like this being done. But, I’d like to know the difference —
— how much MORE time do we spend on our kids than parents of normal children do?
— HOW does our caregiving differ from theirs? For example, both kinds of parents may say “we spent an hour helping our child with their homework” but parent A was merely overseeing the homework that the child was doing, perhaps while cooking dinner with the child doing homework at the kitchen table, but parent B was sitting with the child tediously, patiently going over every element of the homework with the child. Or as another example, parents say “I got my son/daugthter ready for bed” and we all know that for parent A this means overseeing and directing the child to brush teeth, get PJs on etc, but for parent B it might mean undressing a child, changing a diaper, putting the PJs on, brushing the child’s teeth, etc.)
We use the same language as parents of normal children do, but our actual work is so much more intensive.
We need studies which break down these activities by task and by the level of work and involvement of the parents. Maybe this study did this and there’s more detail on it somewhere, but here’s what my fear is;
Other parents of normal children read something like this and say “Hell, I spend more than 30 hours a week taking care of my kids…why are these people griping so much?
When my daughter was about 3 years old, I was telling a friend who also had a small child that I was so exhausted from taking care of my kid and she laughed and said “join the club.” But I knew that she didn’t “get it” and so I challenged her and we swapped kids for a day. Let me tell you…taking care of her little boy was a walk in the park compared to taking care of my little girl. At the end of the day, she returned my daughter and said “I take it all back — what you do every day and what I do every day to take care of our kids is *worlds* apart different.”
That’s what I want one of these studies to show.
Does that make sense to anyone out there?