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.

Help - I'm imprisoned by my Gmail

It's finally happened; the only way I can write a blog post today is to NOT open my Gmail account. Clearly I am not following the advice of Julie Morgenstern in her book Never Check E-Mail in the Morning. Morgenstern writes "E-mail is not evil. It is just a little dangerous." Mmmn...debatable?

Alas, I've become one of those persons who has too many e-mails to keep track of, on too many topics. I pride myself on having lots of "conversation folders" for different issues but they seem to have mutated in recent months. On some days I'm even what Morgerstern calls a "Power e-mailer" - someone who receives more than fifty e-mails a day and sends out a minimum of twenty. Who-hoo - too bad this doesn't come with a power salary.

As I sit here in the library writing this I am realizing how rarely I have been reading books lately, compared to other times in my life. And I'm spending more time on the computer than ever before. As Police Chief Marge Gunderson said in the great Coen brothers' movie Fargo, I think they may be, you know, connected.

No, I'm not going to write about strategies for managing your e-mail and not letting it take over your life. Efficiency strategies are like diet tips. You know you need to eat more vegetables and less Doritos. Doing so is another story.

So instead, I'll share my resolution for the new year: Less screen time, more book time. Wish me luck. Maybe there's a novel about a group of Facebook friends who meet nefarious ends after they ignore a certain person's friend request.....

Watching the Inauguration in the OTHER Washington

The Hilton hotel in Vancouver, WA was thousands of miles away from the Washington Mall but it felt almost like "being there" to me. Dan and I watched the inauguration with friends at the bar of the hotel, in front of a flat screen TV more frequently used to show Blazer games.

Over breakfast and coffee, we watched Obama take the oath, heard Aretha sing, listened to Elizabeth Alexander's poem and stood like the millions there as we sang the national anthem along with the U.S. Navy Band Sea Chanters.

Tears flowed from us all, I think, along with huge cheers and loud clapping at key moments. Wow. I just kept saying wow. That first time I heard Obama introduced as "the 44th president of the United States" - I don't think I'll ever forget that proud, ecstatic feeling.

And, back at home, just when I thought my tears were dry, I came upon this story about Kakamega, the very town Dan and I lived in during our Peace Corps experience 20 years ago. Yvonne Chaka Chaka, a South African singer who was popular in Kenya "back in our day" gave a free concert in Kakamega to celebrate "Obama Day" and promote a much-needed anti-malaria campaign. Wow, again. Talk about the circle of life.

For more photos for the Daily Nation, Kenya's newspaper, see this story: "Kenya awaits Obama's inauguration"

Fight or Fight? or "Oh, no, it's family day at the museum"

Sunday afternoon at the science museum. It seemed like the best laid plan. My friend "T" and her son "J" would meet up with Sayer and I and cross the river over to OMSI, the great science museum in Portland. Our family has been an OMSI member for years, and on our last trip as a foursome, "T" joined as well.

So, membership cards in wallet, we set off. Our first sign that something was different was the traffic guard pointing us to the overflow parking lot for the overflow parking lot. Mmmn? Was it a new exhibit? Our question was soon answered by the "Family Day" banner.

Family Day is the first Sunday of the month, we found out, with deeply reduced admission fees. Let me say right off that I think family days are very important and a great way to reach out to people who may not otherwise be able to enjoy a cultural attraction. That said, as a mothers of a child on the autism spectrum, my heart beat quickened and my hands started to sweat. Crowds, noise and autism - a precarious combination.

The museum was packed. The kids actually handled it fairly well, but I was on high-level alert the entire visit to make sure Sayer could cope with the excess stimulation. His attention span was even briefer than usual, and he and I made the circuit of his favorite spots pretty quickly. Not quite like going to the Met by myself and gazing for minutes at a Monet.

Since we were all members with unlimited admission, we didn't feel bad that we didn't stay as long as we usually do, or get to see a show at the planetarium (they were sold out). Luckily, we were able to lure the boys out with the promise of a trip to Ben & Jerry's for ice cream. Good thing - I needed some Cherry Garcia to recuperate. My own tolerance for noise and crowds is decreasing as I get older.

When Sayer and I got home, I finally relaxed, well, OK, fell into a deep nap. "T" and I both agree to avoid OMSI visits the first Sunday of the month in the future. Sometimes the greater good and instinct for individual survival collide!

A List of 100 Things: Which ones have you done? Which do you most want to do in 2009

As this new year starts, I wonder how many new and exciting experiences will come my way in 2009. Given that the first day of the year featured a trip to McDonald's indoor playground and a work out at the gym, the thought crossed my mind: Is that all there is?

Luckily, I remembered seeing this list of 100 Things in China's Brilliant Spectrum Child blog. The idea is to mark those things that you have done. For bloggers, it's a way for readers to learn a bit more about you; and for everyone it's well---fun. Below, I have marked those that I have done in blue, and I welcome you to try. Just copy into Word and reformat to black, and then mark those things that you have done.

I have…
1. Started my own blog
2. Slept under the stars
3. Played in a band
4. Visited Hawaii
5. Watched a meteor shower
6. Given more than I can afford to charity
7. Been to Disneyland/world
8. Climbed a mountain
9. Held a praying mantis
10. Sung a solo
11. Bungee jumped
12. Visited Paris
13. Watched lightning at sea
14. Taught myself an art from scratch
15. Adopted a child
16. Had food poisoning
17. Walked to the top of the Statue of Liberty (and me a native New Yorker)
18. Grown my own vegetables
19. Seen the Mona Lisa in France
20. Slept on an overnight train
21. Had a pillow fight
22. Hitchhiked
23. Taken a sick day when you’re not ill (ah, the things you do when you are 22 and the New York City party scene beckons)
24. Built a snow fort
25. Held a lamb
26. Gone skinny dipping
27. Skied a marathon
28. Ridden in a gondola in Venice
29. Seen a total eclipse
30. Watched a sunrise or sunset
31. Hit a home run
32. Been on a cruise
33. Seen Niagara Falls in person
34. Visited the birthplace of my ancestors
5. Seen an Amish community
36. Taught myself a new language
37. Had enough money to be truly satisfied
38. Seen the Leaning Tower of Pisa in person
39. Gone rock climbing
40. Seen Michelangelo’s David
41. Sung karaoke (Guitar Hero counts!)
42. Seen Old Faithful geyser erupt
43. Bought a stranger a meal at a restaurant
44. Visited Africa
45. Walked on a beach by moonlight
46. Been transported in an ambulance
47. Had my portrait painted
48. Gone deep sea fishing
49. Seen the Sistine Chapel in person
50. Been to the top of the Eiffel Tower in Paris
51. Gone scuba diving or snorkeling
52. Kissed in the rain
53. Played in the mud
54. Gone to a drive-in theater
55. Been in a movie (documentary)
56. Visited the Great Wall of China
57. Started a business
58. Taken a martial arts class
59. Visited Russia
60. Served at a soup kitchen
61. Sold Girl Scout Cookies
62. Gone whale watching
63. Got flowers for no reason
64. Donated blood, platelets or plasma
65. Gone sky diving
66. Visited a Nazi concentration camp
67. Bounced a check
68. Flown in a helicopter
69. Saved a favorite childhood toy
70. Visited the Lincoln Memorial
71. Eaten caviar
72. Pieced a quilt
73. Stood in Times Square
74. Toured the Everglades
75. Been fired from a job
76. Seen the Changing of the Guards in London
77. Broken a bone
78. Been on a speeding motorcycle
79. Seen the Grand Canyon in person
80. Published a book
81. Visited the Vatican
82. Bought a brand new car
83. Walked in Jerusalem
84. Had my picture in the newspaper
85. Read the entire Bible
86. Visited the White House
87. Killed and prepared an animal for eating
88. Had chickenpox
89. Saved someone’s life
90. Sat on a jury
91. Met someone famous (maybe....he said he was Charlie Daniels but I'll never be 100% sure)
92. Joined a book club
93. Lost a loved one
94. Had a baby
95. Seen the Alamo in person
96. Swam in the Great Salt Lake
97. Been involved in a law suit
98. Owned a cell phone
99. Been stung by a bee
100Ridden an elephant

This exercise reassured me that I have got quite a few experiences under my belt, and it also got me to think about what I'd like to try to do in 2009. So, I picked a few things I'd like to add to my list of things in 2010:

The one thing I'd most like to do in 2009 but likely won’t, although you never know:

Visit the birthplace of my ancestors

Three things I’d like to do before 2010 that are more doable:

Join a book club

Get flowers for no reason

Play in the mud

What items top your "want to do" list for 2009? I'm curious to know!