Kintropy In Action

I originally wrote the following response as a please-publish commentary for The Oregonian.  It was not published, but, hey, that's the advantage of having a blog, right?

The context was that The Oregonian had published a series of articles and letters regarding public school drop-out rates and special education.  The letter that really drove me nuts came from a fomer special-education assistant who had the following to say (Oregonian, Friday, April 11):

"When I became Tigard School District's first special education assistant in 1979, I worked in a program that was a huge success. We taught the kids with a program that put mainstreamed students in regular classes with modified work from the special education teacher (other students didn't have to know) and those who needed it were in contained special classes, except for physical education and electives.

We taught them to ride the bus, cook and [perform] other living skills. Those with emotional problems had special coping-skills classes. We had special math, English, science and social studies classes at levels students excelled at.

We didn't have any severely handicapped students who were there merely for socialization.

By the time I retired in 2000, we had "mainstreaming" and an overload of students being integrated merely for social time. This took time from those who were able to learn.

Severely disabled students who should be in a specialized environment created to teach them skills they need are now in public schools where they languish.

The federal law giving them the right to a "free and appropriate" education has harmed, not helped, all special education students. It is time to rethink the system.

DONNA NESBITT Tigard"

Here was my response:

Special education isn’t a place.  It is a set of services that support a child’s academic learning and self-empowerment.  I should know.  I am a former special education student.

My parents had chosen this school to support my older brother who was born with spina bifdia and a cognitive disability, but when I was evaluated, I, too, earned special education services.  A string-the-beads fine motor skills test was my ticket to adaptive physical education.  It capped a long string of observations my parents, one of whom was a special education teacher, had made about my sensitivity to touch, speech delays, and motor skills:  I had an (albeit undiagnosed) disability.

My IEP, however, didn’t constrain me to a self-contained classroom; it provided me with individualized supports.  For speech, I spent a little time working with a speech therapist.  For exercise, I left my homeroom classmates and joined my friends in adaptive physical education.  For reading, I moved to my older sister’s classroom.  That’s right:  by kindergarten, I was devouring books well above my grade level.  My IEP comprehended both my disabilities and my strengths and placed me accordingly.

I was not a burden on the system; neither were my classmates.  We supported each other.  I remember learning the art of conversation from Vince.  He typed into the keypad attached to his wheelchair’s arm; it spit out a ticker-tape like message.  I had to wait patiently for my turn to speak.  I would read his message aloud and respond.  He would smile, maybe vocalize, and start typing again.  We conversed.  We were equals. 

It amazes me that much of what we had right in the 1970s is still being debated, and in some cases discarded, here in 2008.  The fundamental guarantee of a free and public education carries an Animal Farm-like asterisk that some kids are more equal than others.

To me, this segregation of children is unacceptable.  In addition to all my personal history, my four-year-old daughter, Hannah, was born with a cognitive disability.  We had an opportunity to place Hannah in a self-contained preschool thirty minutes away.  We passed.  Instead, we worked with our IFSP team and our local preschool to lay a path for Hannah’s inclusion with her peers and her community.

Who knows what the future holds for my daughter, Hannah?  All I know is that the system I benefited from in the 1970s, where each student was “special” and supported according to his strengths and needs, had it right.  That is the map I am using to navigate the special education maze with my daughter.  Through it, I look forward to helping her employ her free and public academic education to discover and develop her strengths.

***

-- Dad 

Posted by Dad at 01:51 AM | Permalink | Comments (3) | TrackBacks (0)

Freeing my mind from rehashing the inane ABC debate, I went on a policy search tonight.  My targets:  special education and, indirectly, policy principles regarding people that experience disabilities.  My grandfather, my older brother, my daughter, and I all have multiple disabilities:  kind of a four-generation tradition.  Given that tradition, this policy-focused research seemed like a good place to shake off the non-issue mass media barrage of the last few weeks.

After searching each candidate’s website for disability-oriented content, principles, experience, and policy, in my opinion, Senator Obama wins, hands-down.  Here are my overviews by candidate:

Continue reading "Fourth-Generation Viewpoint: The Candidates' Disability Policies" »

Posted by Dad at 02:38 PM | Permalink | Comments (0) | TrackBacks (0)

It's 3:00 a.m..  The phone is ringing, incessently.   The kids are peacefully asleep in their beds.  Mom anxiously works her way through their rooms, verifying they are safely tucked in, undisturbed.  The world is in crisis, waking someone in the White House who must respond –

Really?  Mom's making the rounds because Something In The World Is Happening (isn't it always)?

It's much simplier here at our house.  About an hour earlier, it's not the phone ringing that wakes me; it's the buzzing alarm.  Time to swap nursing shifts with Janette.  Soon after, Janette is yawning medicines given and when-kids-fell-asleep times into my waking brain.  As she heads to bed, I am verifying that g-tubes are not leaking formula into the bed, clearing the humidifier line of excess water, and making sure Hannah's trach is securely in place.  I'm walking across the hall to Gabriel's room, rewrapping him in the blankets he's managed to kick away, lulling him back to sleep.

Sure, in an hour, a hypothetical call might route from some distant country into the President's House.  He's got staff to handle that, though, doesn't he?  And the next President will do, too, regardless of who he or she is.

I would feel safer, in fact, if the President were picking up the phone, rather than waiting for it to ring.  Maybe he or she would call in advisers, leader of Congress, and develop and implement universal access to quality health care, a reassessment of military missions and expenditures in lives and money, a progressive and sustainable tax and welfare system.

I know.  I'm dreaming a bit myself right now, aren't I. 

But I imagine 3 a.m. Commerical Mom might agree with me.  She didn't get a 3 a.m. call:  not really.  She and Hubby had sat at the dinner table that night, after putting the kids to bed, discussing the Basics:  jobs, grocery and gasoline costs, house payments, a school report card, medical bills.  All of that had stirred around her subconscious, producing a big, heart-pounding nightmare.

She made the rounds to verify that The Big Bad Nightmare was just that.  The kids were safe.  The house was intact.  She and Hubby still had jobs.  No medical, debt, or other crisis had chewed up her loved ones.  Not yet, anyway.  She could tip-toe back down the hallway and crawl back into bed.  Tomorrow would be another day.

-- Dad 

Posted by Dad at 01:15 AM | Permalink | Comments (2) | TrackBacks (0)

I confess.  I am a political junkie.  Polls, pundits jabbering, primary election results, the 24/7 he said/she said:  sign me up.  Give me your tired, your poor....  while you're at it, your data, and, most importantly, the methodology behind your data, too.

After Iowa, Barack was annoited the winner; Huckabee was the surprise spoiler.  Tonight, after New Hampshire, Clinton is declared the "surprise" winner (really?  a surprise after pre-Iowa caucus polls?); McCain, the Comeback Kid.

Some perspective, news outlets.  Please?

Let's look at the Election Map, folks.   Iowa has 7 electoral votes; New Hampshire, 4.  There are 538 votes from the College available, and it takes 270 to win the general election.  In the Primary Season, it makes more sense to see what percentage of total votes available have been claimed.  That percentage would be (drum roll, please):  2%.

Based on that 2%, I predict.... nothing.  Yes, there is a school of thought that these early primaries can predict national trends, but all I keep hearing on the news are "surprise," "comeback," "wow, who would have pictured that?"  It seems the tv news outlets are more interested in influencing events via the "story" than dispassionately reporting the news, real news, as it develops. 

So, yeah, I'll keep watching, but with an eye on the real data and vote count.  I'll continue to particpate myself in politics, committees, and advocacy for issues I care about.  And I'll wait patiently to cast my vote here in Oregon for the candidate of my choice.

-- Dad

P.S.  I'm sure someone will point out the difference between delegates to the Parties' conventions verses votes in a general election, but I think the Electoral College helps greatly in keeping things simple and in relative scale.

For those interested in a different scale, though, according to the DNC site, there will be ~ 5,000 delegates for the Democratic Convention in Denver.  Total delegates from Iowa + New Hampshire is 57 + 30 = 87.  Out of ~ 5,000 total delegates, that amounts to ~ 2% also.  Interestingly, some of the delegates are not assigned to caucus or primary winner:

"Most (around four-fifths) of the delegates will be 'pledged' to candidates based on their state's voting in the primary, so the nominee could be known in advance. However, there are complicating factors, such as delegates that have not pledged their allegiance to a candidate, as well as rules governing how delegate votes are allocated when candidates drop out of the race. Once a candidate locks up a majority of the delegates, he or she can receive the party nomination." - DNC website

Makes the winner harder to call, particularly if the race remains close through Super Tuesday and the poorly named "Super Duper Tuesday."

-- Dad (again) 

Posted by Dad at 08:14 PM | Permalink | Comments (0) | TrackBacks (0)

Take two stories from CBS television this long weekend (both of which were introduced as "special kids" stories). 

The first highlighted a cheerleading team:  The Destiny All-Stars.  Under the banner "Cheers From The Challenged," reporter Jeff Glor embraced the story of Chole, a 14-year-old girl who experiences autism and Down's Syndrome.  He pointed out:

"Chloe, who's 14 years old, has a developmental disability. But on the 'Destiny All Stars' cheerleading team, that's nothing unusual, because everyone does...."

Apparently, this separate-but-unequal cheerleading concept is catching on:

"Destiny, which is based in Gaithersburg, is riding a nation-wide wave that has doubled in size in the past year. There are nearly 160 squads of special-needs cheerleaders in 34 states. Dr. Allen Crocker, an expert in the field, says the program bucks society's tendency to leave kids with disabilities behind."

The story was constructed to push all the usual buttons. 

• The problem:  Chloe didn't interact well before joining the squad.  She was lost among her typical peers.  
• The cure:  Separate Chloe from her typical peers.  Put her on a cheerleading squad for kids with developmental disabilities.  Chloe blossoms, progressing socially and developmentally.

Heartstrings pulled.  Message delivered.  Segregation heals all.

Contrast this with a story during the Thanksgiving football games on the same network about Katy Marchman.  Katy is a huge Baltimore Ravens fan; she also has a diagnosis of Angelman syndrome. 

In this story, though, the reporting team focused on how big a football fan Katy is.  Katy gets excited about going to a game.  Katy keeps a scrapbook of team photos and likes to look through it.  Katy uses her voicebox board to cheer during the game.  Her family and the team itself supports her as needed, but Katy's owns her fandom.

Katy, in other words, is a person, first (actually, a FOOTBALL FAN first).  And that isn't special; it's just how things should be.

-- Dad 

Posted by Dad at 09:49 PM | Permalink | Comments (2) | TrackBacks (0)

In 2004, Hannah arrived on her own schedule.  By that, I mean early – emergency early.  Her body had drawn its own ultrasound map, slowing and then ending growth somewhere toward the end of the 2nd trimester.  When she was born, we didn't know what to expect.

Over the next six months, we figured out much of the medical stuff.  We moved from feeding syringe and breathing triage at three months to trach and ventilator care at six months.  When Hannah became ventilator dependent, she qualified for in-home nursing care through the Oregon MFCU Medicaid waiver program.  Suddenly, we had support.  Nurses trained us.  We became expert, one-patient RTs.  And we got to raise our daughter at home with our family.

As our life stabilized (that is certainly a relative term), Janette and I wanted to give something back.  Here we were, getting fantastic support that allowed us to keep our family intact and healthy; we owed someone something.  Janette wanted and needed to continue to focus on Hannah; I decided to go out foraging for that something.

That's where Partners In Policymaking came in.  In late 2005, I was accepted into the Partners program.  I traveled down to Salem once a month and jumped into Disability Advocacy and Leadership 101 with my classmates.  We listened, learned, and shared.  We built skills that would help us understand and influence policies that impact people and families that experience developmental disabilities.

I graduated in September 2006.  I looked for ways to use my newfound knowledge and enthusiasm back in the community.  Some of my efforts faltered; some succeeded.  Several continue.

In big and small ways, many in our Partners 2006 class have also found ways to contribute since graduation.  Some graduates advocate for educational and community inclusion.  One speaks at local schools, describing her own experience growing up in those schools.  Two started and lead the popular & growing All Born In conference each year.  Several serve on the board of Self-Advocates as Leaders (SAL).  One graduate even serves as a State Representitive.  All of us, I think, continue to develop ways to contribute.

Maybe you would like to contribute, and you are looking for a way to get started.  Well, if you live in Oregon, the Oregon Partners In Policymaking program is accepting applications for the 2008 session.  To learn more, click here. 

The deadline for receipt of applications is November 23, so apply ASAP.  If you are wondering if this is for you, don't just take my word for it; listen to what some other Partners' graduates have said:

Q:  "What was your favorite aspect of Oregon Partners in Policymaking?"

Answers:

"The constant messages that our kids have rights and futures that are worth fighting for. Knowledge that we are not alone. Highlights: Kathie Snow, Michael Remus, David Pitonyak, George Braddock."

“An amazing, empowering program for advocates who wish to learn their way through legal, moral, and ethical maze the government and different programs stick us in."

"Focusing on the BIG PICTURE, or the problem instead of the symptoms. I didn’t realize how caught up I was in day-to-day and not trying to improve...."

More graduates speak. 

Quick link:  APPLICATION to OREGON PARTNERS IN POLICYMAKING (NOV 23rd deadline!)

Leave me a comment or email me at info@kintropy.com with any additional questions about my experience with the program, and I'll be happy to reply.

-- Dad 

Posted by Dad at 08:51 PM | Permalink | Comments (0) | TrackBacks (0)

*** Disclaimer:  See below for my retail rant - my commentary for the week.  I know:  with our family life, I have a lot more to focus on.  It was a long week, though, and poor customer service & retail operational design drives me nuts after 13 years in music retail management. ***

Netflix, I am sorry.  I strayed tonight. 

Walking through Fred Meyer with my family today, I saw endcaps and face-outs filled with strong DVD new releases.  Rather than add them to our Netflix queue and wait patiently for them to arrive by mail, I impulsed.  I ran to our local Blockbuster, found three of the new releases I wanted, and headed to the counter to checkout.

Fortunately for you, Blockbuster still doesn't get it.

They purged my customer file.  Because I've been a loyal Netflix customer (well, until today's faux pas) and because I haven't rented from Blockbuster for awhile, they removed me from both their current and old customer database.  The clerk apologized briefly, pushed me to the McDonald's-grill-order-line equivalent, and handed me an application to fill out.

I admit I didn't take the high road.  I really wanted these movies:  Transformers (Gabriel and me), Surf's Up (whole family), and the new Fantastic Four (kind of whole family).  I filled out the form, grumbling all the while.

When the manager came over to process my form, he asked what the problem was.

"You purged my file:  makes it kind of inconvenient to give you money."

"How long since you rented with us?"

"Six months or more."

"That's why.  We purge customer records after six months of inactivity.  We have tens of thousands of renters; we can't keep them all on file."

Oh, okay.  So it's my fault.  I'm part of Blockbuster's acceptable attrition.  The manager's version of customer service was to explain why my behavior was incompatible with Blockbuster's system, not try to win me over as a returning customer.

My brother and I managed retail stores and operations for over a decade each.  My first non-family retail job was as a video and music clerk at The Wherehouse.  I walked the floors.  I knew all our regular customers.  We shared movie and music tips with each other.  They came in and asked for my recommendations.  I sold lots of rentals and music, helping people find stuff they'd be interested in.  A kid saw me in a pizza place once and yelled out, "There's the Wherehouse Man!"  No joke.

Based on that experience, this is not how you win over a customer.  I self-identified myself as a Netflix subscriber returning to rent from Blockbuster on a trial basis for one night.  Having put a customer through a similar re-application, I would have

1. Apologized for the inconvenience
2. Said thank you for filling out the application and for returning to Blockbuster
3. Offered a mid-week only coupon for a free movie for the trouble (a customer service smile + guaranteed return business that will probably develop into a nice rental stream)

But, no, the computer system kicks people out.  Attrition is okay.

Blockbuster:  a couple of clues.  You can't afford to lose returning customers.  Computer memory is cheap.  A more sophisticated profiling system would have identified me as a 4+ DVD renter a week (that would pay for a pretty nice computer upgrade BTW).  Your systems may not retain rental history over x period, but you should hang on to every customer like your retail life depended on it.  According to the Trades, it does.  While you're at, walk the floor & know your product.  Desk jockeys can take in money, but don't generate any.

So, yes, I was still weak.  I rented the movies, but Blockbuster hasn't won my allegance.  We'll shelve the cards on returning the movies and update our Netflix queue. 

It would be great, Netflix, if you could figure out a way to scratch the impulse rental itch, though.  Maybe take a page from the RedBox book and set up stations for subscribers at every FedEx/Kinkos (shipping + hot title rentals on the spot)?   Just an idea.

In the meantime, we'll pop our finished movies back in the mail & receive our next items quietly (and pretty quickly, I might add - just not same day).  

Thanks for listening.  Keep up the good work, Netflix.

-- Dad

Posted by Dad at 05:19 PM | Permalink | Comments (0) | TrackBacks (0)

For we Oregon voters with mail-in ballots freshly in hand, I recommend checking out City Club of Portland's Measure 50 analysis and recommendation.  This very clear and thorough document does a great job of dispelling the myths surrounding this issue.

In addition, if you didn't catch it on KOPB, City Club sponsored a Measure 50 debate (link to mp3).  Representitive Sara Gelser did a great job of laying out the sponsors' case for Measure 50, and, to be fair, J.L. Wilson came well-prepared to present the "No" position.  I enjoyed high school debate, and I thought both participants did well.

Speaking of Rep. Sara Gelser, she had a fantastic freshman year in the Oregon Legislature.  Kudos to her important legislative effort on behalf of families and individuals that experience disabilities.  Passage of HB 2406 - a bill that opens up home nursing support for kids beyond those that are technological dependent (our matching criteria in MFCU) - was a huge win for our community. 

This will be a huge help to some of the families I know.  Having support at home often allows families to stay together at home:  an important win for everyone.  See her introduction of the bill on the House floor. 

Thanks for all your work, Rep. Gelser!

-- Dad 

Posted by Dad at 01:46 AM | Permalink | Comments (2) | TrackBacks (0)

Last week, I turned on the radio.  The KOPB Fall Fundraiser had started.  I listened to the hosts banter back and forth, encouraging people to call and pledge.  I waited patiently for the news to return. 

At the top of the hour, I was rewarded.  Serious Broadcaster relayed the news, covering Iraq, Iran, domestic politics:  all things NPR.  The local news person gave the Oregon headlines.  And then they returned.  The Fall Fundraiser.  Costs $20,000 a week for an NPR show.  Please call.  Give anything.  Give everything.  Just call.

The radio's lit face grinned at me.  Its dials stared at me.  C'mon, it said, you can contribute more.  Yes, you paid up during the last fund drive, but if you pay more now, they'll go away... eventually.  Phones bbrringed endlessly from its speakers: an erratic, analog heartbeat that proved how destitute the patient was (analog phones?  all they can afford are analog phones?).

That was last week.  For the price of an expensive cup of coffee, you can support.... 

I bided my time, each day testing my luck, seeing if I could sneak up on the radio and enjoy content without pledge breaks.  Each day, I was defeated.

Today, Tuesday, the Fundraiser continued.  I did what I had to do; I pulled the plug on the radio.  Its grin faded slowly to a black grimace.  I, an NPR and KOPB supporter, had silenced the pledge drive.  I needed to hide my crime.

Having no floorboards under which to hide the radio, I could only turn away from it, mentally discard it.  At first, I was successful, but my crime ate away at me.  My hunger for news expanded in my stomach.  Softly at first, then louder, I could hear the ringing - that analog bell ringing!  Ringing and demanding!

I'm sure everyone around me can hear it ringing.  Yes, I did it!  I turned off the radio.  Won't the ringing stop?  Please... pledge and make it stop!

-- Dad 

Posted by Dad at 09:24 PM | Permalink | Comments (0) | TrackBacks (0)

Commentary Disclaimer:  The following commentary reflects my own views on Measure 50 only.  If you are an Oregon voter, I encourage you to research the Measure yourself with the help of the offical Voter's Pamphlet and text of Senate Bill 3

Opponents to Measure 50, like the Oregonian's David Reinhard and Big Tobacco, like to point out the following:

• Yes, smoking is bad BUT
• More taxes for cigarettes suppress cigarette use
• Less cigarette use means less tax revenue
• Therefore, one should not support Measure 50, the Healthy Kids initiative, because revenue will dry up and come out of your, general taxpayer's, pocket

Additional arguments run something like a) most money will not go to the Healthy Kids program anyway, b) amends the perfect as-is Oregon Constitution, c) unfair to the smoking-addicted poor.

Alice, your mirror is ready.  Wonderland is waiting.  All you have to do is close your eyes, walk through the smokey glass, and pop out on the other side where the caterpillar puffs freely and health care is unnecessary (unless, of course, the Queen of Hearts comes looking for your head).

Back to reality:  let's start with taxes.  According to the Federation of Tax Administrators, Oregon's last cigarette tax change occurred in January, 2004; we reduced the cigarette tax per pack by ten cents to $1.18.  How much does the cigarette tax add to a pack of cigarettes in Vancouver, Washington?  $2.025 (7/1/2005).  Matching our northern neighbor doesn't seem completely out of line, particularly if it increases revenue in a state overly-dependent on a single revenue source:  income taxes.

But will Measure 50, if passed, reduce smoking rates and increase revenues?  Using data from a California cigarette tax price increase in 1999, Dr. Hai-Yen Sung summarized his team's findings as follows:

"Over the period 1999 through 2002, the combined effect was to reduce cigarette consumption by 2.4 packs per capita per quarter (1.3 billion packs total over the 4-year period) and to raise state tax revenues by $2.1 billion.... 

Conclusions. A major increase in price through taxation and the MSA provided a strong economic disincentive for smokers in a state with a low smoking prevalence. This effect could be reinforced if part of the MSA payments were devoted to tobacco control programs."  (Hai-Yen Sung, PhD, "A Major State Tobacco Tax Increase, the Master Settlement Agreement, and Cigarette Consumption: The California Experience"; American Journal of Public Health, vol 95.6, June 2005.

I wouldn't claim that Oregon is a state with a "low smoking prevalence."  Anyone who has wandered through Pioneer Square or our bars can take issue with that.  I do think, however, the report above and data from the Campaign for Tobacco-Free Kids successfully links increases in cigarette taxes/prices to a decrease in smoking frequency (at minimum) and an increase in revenue.

So now we have some new money.  Is it true that the Healthy Kids program doesn't receive every penny from Measure 50?  On this point, opponents are correct.  The Oregon Legislative Fiscal Office analysis shows that the estimated 2007-09 extra tax revenue would be $194.5 M.  Of that, the Oregon Healthy Kids Program (OHKP) would receive $133.1 M; Oregon's Tobacco Use Reduction Account, $19.5 M; the Rural Health Revolving Account, $2.1M; Safety Net Clinics, $5.6M.  In the 2010-11 period, OHKP will receive 90% of the funding in total.

Check my math.  I'll wait. 

I'll bet you found a gap of $34.2 M for 2007-09.  This is part of approximately $68 M left aside from 2007-2011 to "help safeguard the program from variations in caseloads, medical inflation, and modest declines in tobacco revenue."  Wow, the Legislators thought ahead and built in a backup plan!  This represents a giant leap forward for the give-everyone-their-money-back Kicker state. 

The pie charts on t.v., of course, don't break the data out the same way.  They fragment the OHKP, essentially arguing that expanding the Oregon Health Plan (OHP) Standard (severely contracted for years), providing partially-subsidized, private insurance options for kids living between the 150% to 300% Federal Poverty Level, supporting rural health initiatives, funding safety net clinics, and administrative costs for the OHKP have nothing to do with OHKP.  Seems like kids (or their parents on OHP Standard - see here for stats on parents with coverage and its impact on kids) might need a private insurance option, live outside Portland metro, and use safety net clinics, especially those located in and around schools. 

As far as amending the sacrosanct Oregon Consistitution? Janie Har of The Oregonian reports that we've already done that 240 times.  Given that one of those amendments was to protect the right to sell alcohol by the glass (1952), I think the Constitution will survive if we pass Measure 50.

Lastly, it is true that higher cigarette taxes will impact the poor disproportionally.  Given that

"Tobacco use cost Oregonians $1.8 billion in 2000. The direct cost to the healthcare system alone in Oregon was nearly $900 million, and every pack of cigarettes sold costs our economy $7.18—$3.45 in medical costs and $3.73 in lost productivity due to premature death and disease." Oregon Statewide Tobacco Control Plan, 2005-2010

I would hope that additional outreach can be accomplished by Oregon's Tobacco Use Reduction Account programs in all communities and economic levels.  Imagine offsetting the negative impact of smoking's health care costs by insuring more kids and increasing anti-smoking programs.  I think we can do more help than harm by raising the cigarette tax a mere $0.845 a pack, don't you?

-- Dad 

Edited for clarity on OHP Standard 10/21/07 (Dad) 

Posted by Dad at 05:25 PM | Permalink | Comments (2) | TrackBacks (0)

"Your insurance company recommended putting Hannah in an institution.  I said, 'No, these parents are taking their daughter home!'"  The hospital social worker paused.  "Besides, there aren't any around that will take a child on a ventilator."

I was speechless.  An institution for Hannah?

For three months, we had been working to save Hannah's life.  An institution, outside the hosptial itself, wasn't part of the picture.  All of our energies were focused on supporting Hannah, keeping her company, letting her and her brother know they were loved.  We wanted her back home.  We wanted to be a family again.

I was reminded of this episode last weekend when Janette and I sat down to watch Where's Molly?, Jeff Daly's documentary about his sister.  Mr. Daly's almost three-year-old sister, Molly, disappeared one day, committed to Fairview Training Center in Salem, Oregon, by his parents.  This was the state warehouse for kids and adults with cognitive and behavioral disabilities.  At its peak, Fairview housed thousands of people.

It is easy to look back on that time, the 1950s-1960s, and make excuses.  They didn't know better then.  Societal pressures were great.  Today we think ourselves more evolved, civilized.  The 1950s seem quaint and primitive by comparison:  ancient history.

I thought that, too, in 2004, talking with this social worker.  An institution?  I hadn't even thought that was an option.  It seemed, well, ancient history, medieval.  We were taking Hannah home.  We weren't saints; just parents.  With the help of a Medicaid waiver program, MFCU, we were going to raise our family, our entire family, at home.

Later, I met people who didn't get the same level of support we did.  They struggled to keep their kids home.  Some succeeded; some didn't.  In the end, at least one person I met, after years of struggling to make things work at home, institutionalized her child.  I understood how she got to that decision, how painful it was.  Our family was lucky to have the support we had.

Community-based support today is much more common, but the institutions still exist.  In 2006, according to the Institute on Community Integration's August 2007 report, 173 large institutions (> 16 people) were still being operated in 41 of 50 US states.  Total resident population with develpmental disabilities:  37,711. (Alba, Prouty, Bruininks, Lakin; pg 33). 

One of them, the Eastern Oregon Training Center, operates here in my home state.  Last year, after much discussion, the state chose to keep this institution open for up to four more years.  Many of its residents have lived their entire lives there.  It seems cruel, some argued, to disrupt and break-up their community.

The Eastern Oregon Training Center had 43 residents in June 2005; 40, in June 2006.  The difference in that year?  Three residents died  (Alba, Prouty, Bruininks, Lakin; pg 30). 

Posted by Dad at 06:07 PM | Permalink | Comments (2) | TrackBacks (0)

And what do you do?  You pee on the flag-painted fire hydrant. 

As evidenced by patriotic outlets like Fox News, this is an international incident.   

I know where this is going.  Yes, we are fighting them Over There, so they won't follow us Home.  We're making progress.  Just give it some time.

But the Enemy is cunning.  He has been home with us the entire time, wagging his tail, pretending to go, catch the ball!  catch the ball! while conspiring with his currish pack.

Soon, our dog park will be overrun.  French Poodles will lift their chins at us while lifting their legs on our Stars and Stripes.  Street mutts with matted hair and peace-sign tattoos will gather en masse on the lawns nearby.  They'll chant "Arf!  Arf!  Arf!", demeaning themselves and all those brave people that have sacrificed themselves for the flag lapel pins, truck tire flaps, and, yes, fire hydrants that bear our Nation's Symbol.

German Shepherds, fitted with helmets and riot grrrrr, will march on the unlawful assembly.  Initially, there will be chaos and a lot of yelping, but the Shepherds will restore order, honor, and dignity.

We, Hillsboro, recently chosen as one of the best places in the US to retire, will return to our cramped, newly manufactured homes, our televisions, our Starbucks, satisfied and proud.  We will sleep soundly, with the help of prescriptions, knowing that our democracy is safe once more.

-- Dad

Posted by Dad at 09:50 PM | Permalink | Comments (0) | TrackBacks (0)