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Caregiving A Job Unto Itself, Study Finds

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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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Comments (5 Responses)

  1. macdoodle says:

    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.

  2. Therapymom says:

    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.

  3. Thur Annfin says:

    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?

  4. DidderBoddersDaddy says:

    @macdoodle:

    Yes; the not present divorced parent is indeed asked or commanded to help cover the cost/time of support for –any– children, not just children with special needs.

    Yes, in –some– cases there are prenatal tests to determine whether or not something is wrong with the child while that child is still in the womb. Sadly, my wife’s pregnancy indicated no abnormalities whatsoever during the full term she carried my youngest child, her first child. (my second child, my oldest had no problems and is completely normal; well, she’s actually probably above average where intelligence is concerned, and physically healthy as well.) The fact is this, there was no prenatal test available then and there is no prenatal test available at present that can detect a rare condition like my daughter has, which is suspected to be a micro-deletion of a chromosome arm; the location of which has yet to be discovered in the human genome, which by the way is actually quite complex regardless of what some people think.

    My wife and I divorced a couple of years ago and I’m a single dad taking care of my youngest now, and I’m not going to lie, it is a struggle and this story is accurate. When I read it, I knew this study was a scientific study that was backed up by data that was collected and analyzed and processed in a scientific method (processed scientific data = confirmed+verifiable = factual information).

    However and hypothetically, if I had known while my wife was pregnant that something like this was wrong with my daughter and we were given the choice to terminate the pregnancy, I would not have even considered it an option; especially after knowing and loving the child, she is the sweetest and most loving child that I know. And I know there are sweet kids out there, maybe sweeter than she is, but I haven’t met one yet; not saying I won’t, I just haven’t yet… She is an absolute joy to be around 95% of the time, and the other 5% she is having her standard and typical “kid” moments just like all kids have — regardless of whether or not they have a label stuck to their back that has “Normal Child” written in bold and stamped “Pre-Approved for Birth”.

    Spend a little time learning about Developmental Disabilities and how much effort parents like me invest in the love for our little ones, and then spend some time around a child with special needs and get to know him or her. Being a parent helps a little bit as well, and it is obvious you are not.

  5. jerri says:

    I work on call 24/7 i care for my granddaughter whom has cp–shes beaten the odds drs says ..we just had her 21 st bd in jan… total care… somedays are easier than others..shes 5’6 and 160 lbs… not bad until she decides not too help lol….budget cuts in my state have reduced her personal garments down too 100 per month the states saying can only change her every six hrs or 3.3 times per day….aha NOT!!! I buy what state wont pay for…have been buying her Insure clinical strength drinks sence jan (her BD) at 4 per day costs around 200-300 ok… then her FS were cut because i get small amout of 125 for her xtra needs from ddd fund..ok…on top of all of these state says she only needs 365hrs care amonth hummm ok..budget cuts are hard on us but will get by somehow… I cant work another job because she need the care and i cant afford too pay anyone….so any suggestions here? so wanted her too get a vacation but nows it just holding on too paying morgage her needs and the basics….I not bitter but just sad…. Ive had her by myself sence she was 8yrs old..want too do so much more for her just trying too figure out how???when iam not careing for her i am doing all the other things like house work laundry paying bills, given up on yardwork lol…then maybe if lucky get 2-4hrs sleep per day… and thats not typical more like 2-3…too say least I am wondering if those PPl who decide my fate.. could do what i do 24/ 365 days a yr….vacations aha 2 in 21yrs 4 days ea others were hospital overnights lol….Just wondering/????.

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