A Dozen Reasons Not to Love the Better Care Reconciliation Act of 2017

Here is a link to the Congressional Budget Office Score on the latest Senate proposed Better Reconciliation Act of 2017.

https://www.cbo.gov/system/files/115th-congress-2017-2018/costestimate/52941-hr1628bcra.pdf

If you don’t have time to read all 22 pages, here are some highlights (This is simply copied and pasted. My own editorial comments are in bold type.):

1) Compared with the June 26 cost estimate for a previous version of the legislation, this cost estimate shows savings [to the federal deficit] over the next 10 years that are larger—as well as estimated effects on health insurance coverage and on premiums for health insurance that are similar.

2) enacting this legislation would reduce federal deficits by $420 billion over the 2017–2026 period. This is about $100 Billion more than the previous version. Good news for the deficit.

(Bad news for the disabled [like my son, Matt], the elderly in nursing homes, and children born into or living in poverty through no fault of their own who will be subsidizing this deficit reduction plan by the cuts to their Medicaid health care and services.  Very brave of the Republican Senate to do that. Very brave.)

3) The largest savings would come from a reduction in total federal spending for Medicaid resulting both from provisions affecting health insurance coverage and from other provisions. By 2026, spending for that program would be reduced by 26 percent.

4) In 2026, for people who are made newly eligible under the ACA (certain adults under the age of 65 whose income is less than or equal to 138 percent of the federal poverty level [FPL]), Medicaid spending would be reduced by 87 percent, from $134 billion to $17 billion

5) This one is my personal evaluation, and I am sourcing a bar chart in the report.  The June 26 version shows a cut of $772 Billion in Medicaid.  The July 20 version shows a $756 cut in Medicaid.  PLEASE, FOR THE LOVE OF GOD, DO NOT LISTEN TO SENATOR LAMAR ALEXANDER WHEN HE WILL MOST LIKELY SUGGEST THESE NUMBERS MEAN “THE NEW PROPOSAL INCREASES MEDICAID SPENDING BY $16 BILLION”)

6) The increase in the number of uninsured people relative to the number under current law would reach 19 million in 2020 and 22 million in 2026

7) Under this legislation, in 2018, average premiums for benchmark plans for single policyholders would be about 20 percent higher than under current law,

8) under this legislation, 64- year-olds could be charged five times as much as 21-year-olds, CBO and JCT expect, compared with three times as much under current law—resulting in higher premiums for most older people.

9) For many lower-income people, the net premiums paid in the nongroup market under this legislation would be lower than those under current law if they purchased benchmark plans, but the plans would require them to pay a greater share of their health care costs.

“We will lower your premiums” the Republican Senators told us.  What they didn’t tell us: “The deductibles and copays will be much higher for all of you.”

10) For older people not eligible for premium tax credits, net premiums (after taking into account the tax savings from paying premiums from a health savings account) could be more than five times larger than those for younger people in many states, rather than only three times larger under current law.

11) Under this legislation, for a single policyholder purchasing an illustrative benchmark plan (with an actuarial value of 58 percent) in 2026, the deductible for medical and drug expenses combined would be roughly $13,000, the agencies estimate.

12) Because a deductible of $13,000 would be a large share of their income, many people with low income would not purchase any plan even if it had very low premiums.

If you are an “older American” – say, just a few years shy of being eligible for Medicare; if you are a family member of a person with Developmental Disabilities; if you are poor or working poor, or if you are a Christian, and simply aware of Jesus’ cry for the poor and a Christian’s call to be for the same thing Jesus is for, then you might want to call your United States Senator and let them know you oppose this legislation.  Offer a word of encouragement to them. One hundred bright Americans elected to deliberate and write legislation that builds up our great nation should really be able to come up with something better than this. (202) 224-3121

What He Saw

My father’s backyard view.

This is the last picture I took of my dad in his home. June 3, 2016, my mom and I brought him home after a three-day stay in the hospital for a mild heart attack. He would go back to the hospital the next morning and would go to his eternal rest less than 24 hours after that.

I remember after he drove his power chair up the ramp of his home, instead of going straight through the sliding glass door that leads from the deck into the house, he pivoted to where he could see this magnificent view (that this photograph barely even captures). It made me grin to think this was the first thing he wanted to do after getting home from the hospital – take in this view that he had experienced for 60 years. So I tried to capture with a picture one of the things that he loved.

As I look back now, on this anniversary of my father’s death, I can’t help but reflect on all the things that he saw in his almost 91 years of life. This particular view of his beloved Old Hickory lake changed almost by the hour. The clouds one can see in this picture would eventually transform into the backdrop for a multi-hued sunset of gray and rose and blues and flecks of gold sparkling on the water. My mother reminds us that every day they woke up and looked outside, the lake provided them a new and different vista.

It seems that most every thing my father saw was filled with possibility and new potential. I can hardly remember a discouraging word coming from his mouth. About the only times I remember him raising his voice at me was was for parental guidance that was wholely deserved. However, I do remember him (surprisingly) fussing at his grandchildren on occasion. It was when he heard them say: “I can’t!” He would respond with a firm: “Don’t ever say ‘you can’t.'” And he would leave it at that. I think even as youngsters they got it – that this man who had walked with a brace from the time he was 7 years old, and whom they had witnessed not being slowed down a single step by that “handicap,” was gently reminding them that sometimes it is nothing but our attitude that gets in the way of our achievement.

My dad was amazing at seeing things the way they could be and should be, and then figuring out a way to get involved in moving his vision as close to reality as he could. He did that as a PTO dad, as a State Legislator, as a member of the city planning commission, as a leader in his church.

He was also amazing at seeing things that would never be and loving them just the same. When Leann and I were expecting our third child I had already decided if it was a boy I was going to name him John Mathias Steinhauer, IV. But I was not naming him after me. I was naming him after my dad. A few hours after Matt was born, and we discovered he had Down syndrome, I was really torn about what my father would think about having a retarded grandchild named after him. I never asked my dad what he thought about that. I didn’t have to. He was always as proud and involved with Matt as any of his seven grandchildren. What he saw was “one of his grandchildren.” He didn’t see the imperfections and obvious differences that the world would see in Matt.

If I see half the things my father saw – the way he saw them – I will be OK.

Between the Light and the Darkness

Advent Light

On a crisp November afternoon I found myself between the light and the darkness.

There is an official name for the celestial version of that condition: “dusk.” I needed to be there as I installed outdoor Christmas lights. In that place between light and dark, I would be able to see what I was doing, as well as being able to see the lights themselves.

Alone with the silence, I found myself quiet and still enough to reflect on the great empty space that had come upon me over the Thanksgiving Holiday, due to the absence of my sweet father after his death in the late spring.  Standing in the shadows of my house that blocked a setting sun, holding a tangled wad of Christmas lights, I was surprised to catch myself not fretting over having to spend extra time getting the green-wired-mess straight.  Instead, I was fretting to myself over my friends and family who have made this journey before me.  “Why didn’t you tell me it would hurt like this?” I asked all the faces I could think of who had experienced a “first Thanksgiving” (or Christmas) without Mom or Dad.  In the same instant I was asking myself: “Why did you not know it would be this way – you who have prayed for, and walked with, people on this same journey as their pastor?”

Shaking my head seemed more appropriate than shaking my fist.  And I quickly remembered having the same feeling after my first grandchild, Emaline, was born – that feeling when I understood there are some life experiences for which words fall short of showing the way for another to know the truth.

In the almost six months of having to go through all those hard “first-time-without-Daddy” annually occurring events, this had been the hardest yet.  After his death on June 5th, Father’s Day came around exactly two weeks later, and soon on the heels of that sad reckoning was what would have been his 91st Birthday on July 23rd.  Maybe I was still so numb from his death that I was somewhat protected from the deep sorrow in those first “first-time” experiences. When my birthday rolled around in early November, I was quite sad that I didn’t get my annual birthday lunch at Nashville’s German restaurant, The Gerst Haus.  My dad always took me and his dear lifelong friend, Lucien Swint, for lunch (our birthdays were close together).  Afterwards we would explore their boyhood stomping grounds, by driving slowly through East Nashville, with the two of them narrating a play-by-play of who lived in every house, and the memories that resided on what seemed like every street corner and old building.  It was an annual tradition rich with meaning for me.

Dictionary.com defines the adjective “dusk” as “tending to darkness.”  I understand the thinking behind that being the possible description of an adjective, but I really think “tending to darkness” should be a verb. It adequately describes my feelings on that afternoon of hanging lights.  I was indeed “tending to darkness” – the darkness of my own soul and spirit.  But because “dusk” is that liminal place between daylight and dark, while I might have been “tending to darkness,” I seemed to be “leaning to light.”

I thought about some other “firsts.”  I thought about what my dad might have felt like the first time he got to hold me after I was born.  I thought of the first time he went to one of my school plays, and the first time he heard me sing and play my guitar in public.  I thought of the first time he got to see me hold my own child for the first time.  I thought of the first time he got to see me lead worship as an ordained Lutheran pastor.  The sun kept going down and the coming of dark could not be avoided. But maybe because I had spent that day in the reality of Advent hope, my spirit was no longer tracking step-for-step with the declining sun.

Advent is a four Sunday season of the church that begins the liturgical year.  Some people think about it as a “countdown to Christmas,” but in reality, it is a season to reflect on the expectant waiting and preparation Christians  are called to do until the return of Jesus Christ at the end of the age.  In churches that observe the liturgy, one will see altars and pulpits draped with blue fabric, and the clergy vestments will include blue stoles.  There will be a wreath of four blue candles, and in some churches perhaps one might see banners and other decorations bearing the blue of Advent.  It is a “blue” season, and as it turns out,  it seems that description could be taken literally and figuratively.

Advent occurs over the very days that the daylight hours grow to their shortest and darkest.  There is scientific evidence that a lack of sunlight can impact and magnify feelings of depression. Like my own experience, this is the time of year when many people experience the exact opposite emotion of all that is being advertised, talked about, and promoted in the malls and TV commercials: joy, happiness, celebration.  It is a time when, for some people, it is very easy to find one’s self in a “blue” mood.

The color “blue” is used for Advent because it is known as a color that represents “hope.” Perhaps there is no better reason to hope, in this season of Advent, than to reflect on the promise of Christ’s return and what that will mean for all who find themselves in darkness this time of year.

There are two passages from the book of Revelation that offer great hope:

“See, the home of God is among mortals. He will dwell with them as their God; they will be his peoples, and God himself will be with them;  he will wipe every tear from their eyes. Death will be no more; mourning and crying and pain will be no more, for the first things have passed away” (Rev. 21:3b-4 NRSV).

And,

I saw no temple in the city, for its temple is the Lord God the Almighty and the Lamb. And the city has no need of sun or moon to shine on it, for the glory of God is its light, and its lamp is the Lamb. The nations will walk by its light, and the kings of the earth will bring their glory into it. Its gates will never be shut by day—and there will be no night there (Rev. 21:22-25).

No tears, no darkness.  That’s enough for me to hope for on a crisp November afternoon.

 

Father Teacher

There is so much I want to say at the death of my father – an amazing, kind, gentle and loving man.  I could point you to the several hundred word articles written about his life after he died that were published in local papers and social media.  I could point you to a beautifully done TV news story about his time with FDR at Warm Springs, GA, when he was a 7 year old boy, that aired on the day after he died.Happy Father's Day II

When my dad was diagnosed with some significant heart problems in the last few days of his life I really thought I would have some weeks left to be in his presence. I had already decided that for Father’s Day I would publish a poem that I wrote for him 15 years ago on my blog.  It seemed to be even more true after the ensuing decade and a half since its creation.  Instead, the Father’s Day recognition was offered as a brief Eulogy for him at his funeral on Wednesday, June 8, 2016.

While I hope the images of a “parent/child” relationship are universal enough for anyone to appreciate, there is one stanza that was written out of an experience that only a handful of people witnessed, and so I will share that experience with you here so you may listen to the poem with greater clarity.

The summer after my freshman year in college, when my dad was serving in the Tennessee State Legislature, he and his colleague and good friend, Rep. Jack Burnett, took their families to Nassau, Bahamas, for a week at Paradise Island Resort.  In addition to me, my high school aged sister and my junior high aged younger brother were present.  The Burnett family included two daughters that were about my brother’s age.

Upon checking in at the hotel my dad asked the clerk if he could recommend a good “family oriented” show that we might experience.  “Of course!  The ‘Bahamian Review’ is in our own hotel and it includes dinner and a great floor show!” the clerk replied.  “And it is ‘family’ oriented?” my dad confirmed.  A couple nights later the two families, dressed in our fine dinner wear, were seated at a long table that accommodated the dozen of us.  The table butted right up against the stage, so one could not ask for a better seat in the house.

After a wonderful meal the house lights went down, the show orchestra began the overture.  Spotlights swirled around the large room full of dinner theater attendees and as they swept across the stage I sensed something was moving from the ceiling above.  My brother was sitting with his right shoulder against the stage, and I was directly across the table from him.  As the stage lights began to come up, I looked above to see two giant bird-cage-like contraptions on each end of the stage and in addition to the feathers and glittered costumes there were two beautiful women wearing nothing from the waist up!

As this situation became apparent to the rest of the table I could see my mother “look” at my father with a: “this is a FAMILY show?” look in her eyes.  The only way my brother and I could avoid the tension between my mother and father (and the embarrassment of having all the young females in our group see our blushing faces) was just to keep staring at those cages and those naked women inside them.  As I shared with the family and friends gathered for my father’s funeral, when I told this story there, if looks really could kill, then we would have all been gathered in the summer of 1974 for my father’s funeral, and we would have been begging his friends with political connections to get permission for his widow and (our mother) to be released from jail (where she was being held for justifiable homicide) long enough to attend the funeral.

My life is full of fun stories because of my dad.  My life is full of good memories and deep wisdom because of my dad.  I am grateful and glad.  But today my heart hurts in realizing this is the first Father’s Day in 60 years that I will do it without my Dad.

I love you Daddy!

Father Teacher

I’ve spent a fair fortune in recent years,

          to hang a paper in a frame,

to add some letters behind my name,

that would tell the world

I have learned.

But now I know to the “nth” degree,

the greatest lessons were given me

by a loving

     living

                   legend…

my Daddy.

You taught me how to shake a hand

   and look somebody in the eye.

You taught me how to open my mouth

   and speak distinctly.

   Did I?

You taught me how to avoid a fight;

 it served me well,

 not a single black eye.

You took me to exotic places

and showed me

   dancing naked ladies.

(That your life was spared

for another day on the beach

 was perhaps

  the greater miracle!)

You’ve lived your life in such a way

  that to mirror yours would be OK.

And now the turn is mine alone

to pass these lessons to my own.

My greatest hope when I do,

is that I pass them the largest part

of what I learned from you.

Matt Steinhauer – Father’s Day, 2001

Growing Roses

Roses
I’ve never tried to grow a rose,
but from those who do
I hear
a challenge awaits. 

The soil must be right,
the shears sharp
the sun bright
the trellis straight.
 
All these pieces put into place
in right order
and right space,
might yield
a bursting fragrant bloom,
petals soft to touch,
color to catch your eye
quick before it’s gone.

I’ve never tried to mother a child
but from women who do
I see
a challenge awaits.

The love must be right
the discipline sharp
the smile bright
the truth straight.
 
All these pieces put into place
in right order
and right space
might yield
a healthy happy life,
returned hugs to hold onto,
words to wash the worries away,
quick before they’re grown.

Growing roses
is like growing children.
You get back
what you give them.
 
Matt Steinhauer

Good Days in the Life of a Downs Dad

This essay was first published in the Op Ed section of The Tennessean newspaper in September of 2006. I wrote it in response to a news story reporting a decline of births of Down syndrome babies due to prenatal testing that led to terminated pregnancies. I wanted expecting parents to know what they might be missing.

I am not a medical ethicist or an activist for the disabled. I am a father of a son with Down syndrome. Since the birth of my son, and the September 3rd article about the decline in birth rates of babies with Down syndrome, it has been 4249 days. It has been that many days since our family received the news and made the assumption that our third child and first son would bring us years of hardship and challenges because he came to us with that extra chromosome on what should have been the twenty-first pair. We probably cried that many tears upon hearing the news. But I have also learned at least that many lessons in life and love from my son in the almost 12 years he has graced our lives with his presence. Let me share just a few of them with you.

Me and Matt on the night of his graduation from Station Camp High School in May of 2014.

Me and Matt on the night of his graduation from Station Camp High School in May of 2014.

“I’m sick of you, I’m sick of this trip, and I’m sick of Aunt Edna!” That quote from Chevy Chase’s “Vacation” movie was delivered by Matt while he was standing in our kitchen, having a particularly frustrating day. It brought peals of laughter from Mom, Dad and his teenage sister. It is one of many pieces of internalized movie dialogue Matt will deliver at the most appropriate time in either English or French (since he enjoys interchanging the language and subtitles on the DVD’s he watches).

He came home from school last week (he is a main-streamed fifth grader) “on strike” because he was skipping down the hall. I noticed one time that Matt also skipped down the sidewalk into school every morning after he got out of the car. I have wondered many times, while observing him, why none of the other children were skipping and how old one must be to be “too old” to skip? Can you imagine how much better place the world would be if the U.S. Congress was required to hold hands and skip around the Capitol each day before they began their sessions?

When he was about five years old he called me over to the kitchen table, where he was eating his Rice Krispies, and asked me to “listen.” I bent down and positioned my ear near the bowl and exclaimed, “Wow, Matt! What do you hear?” Expecting the reply of “Snap, Crackle, Pop,” I was humbled to hear his incredible insight: “It’s raining in my cereal.” Listen to a bowl of Rice Krispies some time and then listen to the rain beat against your windshield in the car in a rain storm. You will be amazed.

Within hours of his birth I wrote in my journal: “I am able to hide all of my imperfections behind the façade of my relatively normal brain and body. Matt’s imperfections just hang out there for the world to see. I wonder which of us is worse off?”

Yes, there are challenges, and questions about the future and our life is changed because we have a special needs child. If I could choose now to have Matt “normal” or with Down syndrome, I would choose to have him just the way he is. He may have “less” than typically developing children in some areas, but he has so many talents, so much sensitivity to the world around him, and brings more gifts to our life than some “brilliant” adults I know. This letter may not change the course of the trend in possible terminated pregnancies, but if just one expecting parent reads it and says “yes” to bringing another child like Matt into the world I will be 4249 times grateful – and so will they!

Last Dance

My brother, Steven, rightly claims that he got the first dance with my first daughter, Kerra. As I recall, we were at a family wedding reception when he picked up my toddling daughter and grinned while informing me: “Looks like I’m getting the first dance with Kerra!” He reminds me of that just about anytime we are at a wedding and there is dancing involved.

I have recently been revisiting my journals that I have been keeping for almost 25 years, and was given a gift to relieve some of the sting of not having had that first dance with Kerra.  Whatever cards and notes and written memorabilia I collect during a particular season of journaling goes into a pocket of the cover of that journal, or simply tucked into the inside cover when my journal has no pocket.  I came across an undated “Thank You” from Kerra, and it referred to “that extremely sweet note” that I had written her.  In her note to me she shared: “The thought of you even chaperoning my dance in middle school made me want to kill you guys! Even though it was just dancing! But to let you come in and dance! (Ha ha) what a change.”  She continued: “I also was honored to have my last dance of the junior prom with my father.… I will remember this prom forever though. Thanks for the dance. XOXO I love you.”

It made me smile on many levels. Kerra has given us our first granddaughter, Emaline, and it is just fun and rewarding to think on her life transitions from middle-school-paranoia of the highest order – one’s father threatening to “hang out” at a middle school dance – to high school proms, to marriage, and finally to motherhood. The writing gods rewarded me with the details of what transpired to cause our writing each other. As I leafed through the volume of my journal where I found the note, I came upon an entry in April 2004. I wrote from Washington DC, where I was ironically chaperoning a middle school trip with my younger daughter, Lindsay.

From my journal: Kerra had told us about a week before prom (this past Friday night), parents of officers were expected to help with decorating. So Leann and I arranged to be present and help her do that. What we didn’t know until just 24 hours or so prior to the event was that we also had to help tear down at 11:45 PM!  I lovingly and jokingly told her, “Okay, but I get the last dance!” She laughed and said “Okay.” 

OLYMPUS DIGITAL CAMERA

OLYMPUS DIGITAL CAMERA

Friday night (we weren’t supposed to be there until 11:45) she called me about 11:15 to ask where we were, and to say she and her date we’re ready to go and that they already played the last dance and I missed it and she wanted to dance with me! So we hustled over to Vanderbilt Stadium Club and found Kerra. She got the DJ to play one more slow song and we got to dance! I was so happy and delighted and almost “lost it” as we stepped out on the dance floor – her looking radiant and beautiful in her aqua blue gown and her hair fixed so pretty. I made it through about half the dance before I had to turn it back over to her date to finish the dance so I could go back and collect my thoughts. I hope she knows how much I love her and appreciate her asking me to dance with her!

++++++

There were a couple more things in the thank you note that I did not mention. One of them was Kerra’s admission of crying when she read my note to her. Because she was honest with me about that, I guess I should be honest with her – that when I dictated my journal entry into this blog post, I had to stop about three times. Would you like to guess why? There are many thoughts and ideas, much musing and pondering that I could share on this blog. It seems that I devote most of it to writing about my children. The truth is that I will never be able to share all that I have learned from them by being their father – there’s just not enough white space to write it all.  The other truth is I could write every day for the rest of my life and never express the joy and gratitude and thanksgiving that I have at being given my beautiful children: Kerra, Lindsay, and Matt.