09. March 2015 · Comments Off on An open letter to the New Hampshire House Finance Committee · Categories: advocacy, money and finance, parent education, video

Here is a letter I provided to the NH House Finance Committee today.  It could have been written in 2013, 2011, 2009, 2007, 2005, 2003, 2001…  You get the idea.  I have tremendous respect for advocates who have been at this for far longer than I.

The video that the letter refers to appears at the bottom of this post.

From:              Gary M. Dietz
Subject:          Wait List / Transition Funding / Developmental Services
Date:               March 9, 2015 (although it could be any year from past decades)

Dear New Hampshire House Finance Committee Members,

I am writing in support of level or even increased funding of the wait list (now called transition funding). My rhetorical outreach is similar to many of the folks you will hear in person today. But my outreach also has political overtones.

Back in the late 1980’s, our state made bipartisan commitments to fund community-based supports for those with developmental disabilities. Not only are community based supports more effective, more humane, and family and community centered, they are less expensive than other supports.

Yet every two years we must come to these “begathons” to remind our elected leaders of past promises, economic sacrifices made by families, and to discuss what government – even a small government – should be doing as a safety net for individuals and families.

I encourage you to watch a short video I put together that describes the political and economic reasons funding the wait list and developmental services makes sense. You’ll note that the date on this video is March 2011, almost 4 years ago to the day. Some of the facts may be slightly out of date, but it just as well could have been March of any of the two year periods before it for the past 30 years. You see, these are our realities. And your vote every two years impacts real families. Families who also understand what family values are.

You can find the video here. (I assure you it is not a slideshow filled with emotional photos of children, although those too are important to watch.) Rather, it contains opinions that I hope will inform your policy making.

Thanks for your time and support. Feel free to reach me at the number above at any time.

Gary Dietz

 

 

 

Hi,

The May 2013 issue of Money magazine has an article by Jeff Howe (twitter @crowdsourcing, his writings are easily googleable) titled Paying for Finn.  The article gives a stark picture of the financial issues an upper middle class family faces to effectively care for their son who experiences autism. Whether you think you’ll like the article or not, I encourage you to read the whole thing before reading this rest of this entry.

Negative Response?
My response exists because I was utterly shocked at the level of anger aimed at the author in some social media and blogs.  I don’t want to quote too many of the angry notes, but here is a short selection.

  • “The way this is written  makes it sound like Finn’s disability is an inconvenience to his family.” From the Ollibean.com blog (Ed. 20-May-2013 article seems to have been retracted)
  • “When people speak this way about their children, and in a public forum, it makes me wonder why social services, child protective services or whatever agency is responsibly for child safety, are not monitoring these families to ensure the children are safe from being murdered by their parents.” From a Facebook comment on the Ollibean.com blog
  • “I am quite disgusted with the fact that this man has such anger and resentment towards his son. … Grow up and stop whining.” From a Facebook comment on the Ollibean.com blog
  • “The parent in the article is clearly disgusted by his son and does not even consider his child human!” From a Facebook comment on Karla’s ASD Facebook page (April 23, 2013 post)

I think I understand some critics’ perpectives, though I don’t agree
If I can summarize some of the responses I read, the critics are essentially saying that this father is seriously stressed out, blaming his son for the travails of his family life, and a seriously spoiled upper-middle-income man. I think some more savvy commenters are saying that perhaps Money/CNN editors were editing the piece to be a bit sensational.  (I’ll grant them partial credit on that one.)  Some commenters saw Jeff as wanting to “fix” his son. And while I am sure that some commenters did, it is clear to me that many didn’t read the whole article.  And I think that many critics missed the bigger thesis or at least the larger opportunity this article presented to the general (non-parents of kids with disabilities) population.

With that said, here’s my defense of Finn’s dad, Jeff Howe.

This was a Money magazine article – so the article was about money
This article was not in Physical Therapist Monthly or Autism Daily or a psychology or sociology journal or even in a general newspaper.  It is a magazine about money and a magazine for the most part targeted at middle to upper class people!  So, Jeff’s article was about money.

I understand that there could be jealousy at play. Jeff does do well compared to most Americans.  But regardless of income, if you look at the multiplier needed to raise a child with intense special needs without any outside assistance, even someone with a $100K+ salary could go bankrupt very fast. In my personal case, in the first few years of my son’s life, I spent over $30K per year above and beyond any school or external assistance to keep him safe and included and on the path to thriving.  (Those personal funds are long gone.)

And now, since my son is in a specialized school, should those local, state, and federal supports for that school disappear, his annual school and services bill would be over 3 times my last full-time pre-tax salary.  Not what would be left over after I paid other family expenses, but rather at least 3x my entire pre-tax income!

Maybe Jeff didn’t say it well, but one thing that the general public (not parents of children with disabilities) need to know is that “personal responsibility” is great – but when your child’s minimal needs are 1.5x to 10x or more than your complete family pre-tax income, there is a problem.  And this multiplier is in play whether you make $25K per year or $100k or more!

Jeff loves his child, did you read the whole article?
Here are few things Jeff said in the article.  I am not sure how anyone read the entire article came away thinking he thought his kid was a monster. (Again, I acknowledge some concerns about word choice, but not the thesis that Jeff is evil.)

  • “Despite it all–the broken glass, the tantrums, the bitemarks, the feces Pollacked across his bedroom wall–I quite love my sweet, strange boy.”

I am sorry, but that is a beautiful sentence.  It tells a general population the true horrors of a tantrum and that there is intense love there despite them.  I hear the criticism – that autism (and additional challenges many of us know well) aren’t all about tantrums.  But this is Jeff’s authentic experience to date of his son.  And there is intense love there despite it!  Let’s give Jeff props for his point in his family’s journey.

  • “There were other concerns. His eyes were deeply crossed and his legs hung funny. He lacked muscle tone.  The issues were ‘global. ‘ Later that afternoon we went to our local coffee shop to talk.  Alysia [his wife] cried.  I didn’t.”

I promised myself I wouldn’t talk about gender for this article, but that one needs to be addressed.  Not about money between moms and dads.  Not about how day to day issues are split.  That sentence sums it up and hones in on my empathy for Jeff.  It is hard for a dad to cry and mourn when you are learning about your child’s challenges.  You don’t feel like you should.  So you don’t.  Especially in public. Except for when you do.  This theme, this simple sentence is something I want to explore with other dads as one the the themes of my upcoming book. (Caveat:  I fully realize that some moms don’t cry and some dads are like waterfountains.)

  • “We’ve reached the point where our house, basically, is Finn’s trust fund, meaning we’ll be able to apply the proceeds from the sale of that to his care. That, of course, assumes that we won’t still need a big house to take care of him as an adult and that we can make enough money by downscaling to make a dent.”

Some of the critics callously say that if Jeff thinks Finn is too hard to take care of, he should give him up.  One even said we need to check up on people like Jeff to make sure they don’t murder their children!  What I see is a dad struggling to make the best decisions he can. These decisions include  the one biggie we all, as parents of kids with severe disabilities, make.  How much of a sacrifice must and will we make to our own old age, our own marriages, our own lives in order to ensure our children are comfortable for their whole lives.

He’s trying to show people (people who are NOT us in the community of parents of kids with disabilities) a bit of our reality.  If he, and the editors, had to use a bit of politically incorrect language or dire language to paint that picture, please forgive them as their goal was laudable. Jeff has as much love for his child as any of us do.

Jeff’s “Alien” metaphor in the introductory paragraphs
Some of the criticism, and I suspect readership dropoff, occurred in the first three paragraphs.  Jeff used a metaphor of his son as an ET on a baffling planet.  It didn’t really bother me, because I knew what he meant and what his intentions are.  Perhaps you’ve read the piece Welcome to Holland? Well, I personally find that its simplified metaphor of traveling on vacation to the wrong place by accident minimizing to my family’s experiences.  However some people find that the Holland piece really useful.  And if it is useful to some families, then I am all for it! So I find it hard to understand why are some criticizing Jeff for using a different, but equally valid metaphor.

Jeff wants to effectively help his son.  The third paragraph in his article closes with him saying “The best we can do is help our alien child negotiate the baffling planet on which he’s found himself.” I can see how someone could be offended by this, but I’m not. I think it is kind of good writing to try and convey these feelings to the uninitiated.

Criticism of ROI (return on investment) on your children
Some critics honed in on the ROI word and paragraph. This is what Jeff said:

“Now we’re plagued by perpetual guilt that we could — should — do more for our son. But like a lot of families with a disabled child — even families like ours, with some means — we’re faced with a Sophie’s Choice: If we empty the bank for therapy for our disabled child, it necessarily means not spending as much on his ‘neurotypical’ older sister. It’s an awful thing to contemplate: No parents should be forced to compute the ROI on their kid.”

Some commenters said there was no financial impact at all on their families (God bless them!) Others said that Jeff was boiling his child down to a monetary value. Others even criticized Jeff’s spending on therapy as him trying to “fix” his son.  (I think that last opinion is an outlier even in the parents of kids with disabilities community.)

Jeff is saying that no parent should have to contemplate funds for one child versus another.  He talks about it as a Sophie’s Choice.  Bottom line is that all families make decisions like this whether consciously or organically by just “letting them happen.”  I find it difficult to see how people have turned this into Jeff saying that a child has an ROI.  In fact, it is just the opposite – it is a Sophie’s Choice.

Getting the word out to general public, or talking to ourselves?
Ultimately, I think the criticism comes into play because many commenters on this article are steeped in the life and language and experience of parenting a child with disabilities.  That culture is great (I live it!  I get it! My peer parents are my heros and inspiration!) However, I think this article was written to a general population.

I think that it is important in any advocacy and education piece to meet the target audience where they live.  At the end of the day, I think it is important to get the word out about our challenges to the general population.  We would be better off to focus on the implications of Jeff’s thesis: “Look how hard it is for Jeff’s family financially, and they make really good money! Imagine what a single mom or dad that made $30K a year or is unemployed would have to do!”

Bottom line for me
Remember that the Money article was not written in or for a support group or a disabilities focused publication. Yes, some word choice or sentences probably could have been recast.  Yes, other parents, perhaps older ones with more experience or parents with fewer financial means or parents with a different cultural background would have approached the article differently.  Perhaps you’ll write one!  I would love to hear other detailed, authentic experiences about the money issue.

Submitted with warmth, respect, and admiration,

Gary

EDIT 15-May 1:40pmEST: For those of you visiting (thanks for stopping by!) there is a great public discussion going on about this topic on Jeff Howe’s Facebook page.  Use this link to get there.

 

 

Hello friends,

Welcome to the Dads of Disability blog.  This blog is here to document the journey I am continuing on writing a book about fathers children that experience disabilities.  The other day at the 2013 New Hampshire Family Support conference, I shared a vision of this book project with some other fathers like this:

If we provide a new or even an experienced father of a child with a disability a book that could help them cope even a little bit better; manage issues knowing that others have come before; or see that they are not alone in having feelings and experiences that not only did they never expect to have, but that they may be ashamed of; well, then we would have a great tool for those dads. Would you share stories like this with me so I can share them with other Dads in a book?

Does this simple vision make sense to you?  How could I adjust it?  Remember, although I have been working on this project on a slow burn for a while, it is moving into gear.  If you have opinions, just let me know!  Read through some of the other pages in the top menu in this blog and visit often.  And don’t forget that the main web page is located at www.dadsofdisability.com  The address of this blog is blog.dadsofdisability.com

You can always email me at gdietz@garydietz.com or fill out this form to be notified when the Kickstarter project begins, to let me know you are interested in buying when available, or to share a story!

Thanks for your support,

Gary