Thursday, January 29, 2009

Not so pretty: New National Study on Financial Burden of Raising Children with Disabilities


What impact does having a special needs child have on a family's financial well-being? This is a frequently debated question with limited data to lead the way. However, a recent national study of the financial burdens on families raising disabled children sheds some important, and sobering, light on the subject.

"Material Hardship in U.S. Families Raising Children with Disabilities" is a study recently published in the journal Exceptional Children and written by Susan L. Parish and a few of her colleagues at the University of North Carolina -Chapel Hill School of Social Work. These researchers analyzed data from a 2002 national survey, using specific economic hardship measures to compare families with and without children with disabilities. The full study can be found via a link on Dr. Parish's web site here A summary of the research can also be found at the UNC School of Social Work Fall 2008 Contact magazine article link here. Below is the "Cliff Notes" version.

The study compared families below and above the federal poverty line (a controversial concept itself outside the parameters of this post), on these specific measures: Stability of telephone services, medical hardships, food hardships and housing hardships. The study verified what we likely already know: families at or near the poverty line who are raising disabled children face severe hardships in all these areas.

However, the research also showed that "a substantial proportion of middle-class families raising children with disabilities experienced material hardship." (p.88). The researchers were surprised to find that many higher income families are also struggling. Such families, due to their income levels, are ineligible for assistance and support available for lower income families. Yet, they still incur extra expenses that do not burden other families with "typical" kids.

I think we know what some of these costs are - therapies ,therapies, therapies, durable equipment, special medicine, educational tools, adapting homes for special needs, medical costs. And there are also lost wages of parents who need to care for children, higher costs of recreational opportunities and child care, and more.

What does this mean? It means that many middle-class families raising children with disabilities are running out of food at the end of the month, have to choose between therapeutic interventions and paying their phone bill, must move frequently because of financial problems [and our kids need stability - ouch!], and forgo preventative health care because they can't afford it. What is so frightening is that this study was conducted BEFORE the current economic downturn.

POLICY IMPLICATIONS

What are the policy implications? Instead of reporting what the researchers suggest I'm asking you readers to recommend what can and should be done. My next post will discuss the journal article's policy recommendations but I'm curious about your take. Also, please share how having a child with a disability impacts your families financial well-being. I also know I left out some of the extra costs we families incur.

13 comments:

Anonymous said...

Thanks for posting this story!

Michelle Rogers
Director of Communications
UNC School of Social Work

Carol said...

Wow - you have a good Google Alert system, Michelle! I am actually a UNC-School of Social Work alumni and was thinking about contacting the school to let them know about my post but you beat me to it.

I also know a few DD advocates who could use this data for their advocacy at the state level; I'll make sure they get the link, too.

Anonymous said...

Interesting article....Hmmm, I don't know where to start....the list is long on the financial 'burden'.


Katie

Anonymous said...

As I was working this morning,I wonder if society as a whole understands the impact of autism on their financial burden (it was the economist in me this morning...ie. if 85% of our marriages end in divorces, then that means that a large amount of our families are on welfare and thus needing public assistance, WIC, etc...)

So therefore, the pennies that society pays for services is really 'chump' change in compared to everything else.

Man, I am thinking WAY too microeconomically and macroeconomically :)

Sorry, for my diversion....

Katie

Mia said...

Thanks for writing this. So many people have no idea how affected families are financially by special needs related items. They say it, but don't really think it, know it, understand it.

It always amazes me that the people who need help the most are the ones society seems least willing to assist...or make assistance essentially "easy" to get.

Pam said...

Hi, thank you for posting this timely and important topic. For us, having a young adult with a developmental distability means more: more laundry (he often wets the bed and is messy), more hot water (a hot bath is a favoriet calming actiivey), more gas (a ride in the van is a favorite outing), and more child care for longer; barring a miracle, our son will never be able to be left without an adult caregiver. A huge extra expense too is dental care. Our son needs general anethesia even to fill a cavity. Ugggh. Notice that I listed no special equipment or therapy in my list; just survival takes extra money. Looking forward to your further coverage, Pam

Carol said...

These are great comments; I so appreciate all the examples. I just got back from a farmers market conference so my head is more full of vegetables and marketing strategies than special needs right now, but I'll compile the list and include it in my next post.

Pam said...

Hi Carol, I love farmers markets, all those fresh veggies are great for us. So let an eggplant roost for a little while in your thoughts.

Moving on, another expense for families is the severe lack of care opitons for our loved ones, especially after age 12. Many, many parents (usually the mom) want to work, are able to work, but cannot find reliable care.....at any cost.....for their child with a disablity so they end up at home. I worked full time whtn our children were small and I have terrible memories of days gone bad when sitters would not show, etc. etc. In this area, care often runs 9 to 15 dollars an hour, again, when you can find it, so in many cases when the parent does find work, the net earnings are miniscule. Or, worse for children, many specail ed parents take jobs in schools such as staff assistant because the hours are the same and end up being truly burned out as work and home life start to look the same.

Hang in there and keep up the advocacy/discussions/good work, Pam

babs m said...

With our Aspie in particular, we never know which day the school will call to tell us he's just done something inappropriate or violent. We also have three days a week with therapists coming into the home. So my husband and I both have chosen to work part time, where, in a family of our size, we fall just inside the SSI radar with two diagnosed children. (If we only had one we wouldn't qualify.) This way, we have a chance of being much more available to deal with issues and time tables.

But because of our two we are also not "soccer parents," and won't be. We can't commit to giving our non-autistic son what many of his peers have--baseball, basketball, other team sports with practices and places to be and practices to meet. I think that's a cost that's hard to quantify.

Carol said...

That's a great point, Barb, the opportunity cost to our "typical" kids.

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Carol said...

Thanks so much for the feed back!

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