Leisa A. Hammett

Autism: The Financial Fiasco

Despite my self-pledge to post less and keep it lighter this holiday, today's post today is published in honor of the thousands of Tennesseans living with disAbilities who receive minimal but important funds from The Family Support Program, which is currently on the chopping block with Gov. Bill Haslam and the legislature raising the ax over the alter of some of our state's most disenfranchised citizens. SHAME! We are raising our voices. We are writing letters. I have volunteered to speak and meet. Join us and believe that we will be heard....

Let's talk money. Let's talk green....

When I tell our story--our meaning both the personal and the autism community--sometimes I insert the financial hardship that this pervasive and enigmatic disAbility poses. It's time to expound on that. Right now. Right here....

If you are living outside of our community, from the outside looking in: Did you know that it's very common for a family of a child with autism to mortgage their home one, two, even three or more times just to pay for things like, oh, say...helping your child learn to talk? That is why when I sold my house, then, still co-owned with Grace's father, a year-and-a-half ago, there was virtually zero equity to pull out and invest forward. Virtually pennies.

Yet, I have also often stressed it is a privilege to go onto debt. Huh? Yeah, we were able to refinance our home. We were able to borrow. We found ways to fork over $20K to pay for speech therapies when insurance denied us our state rights and shut the funding flow. Privileged because having worked one year (1999-2000,) as an Autism Society of Middle Tennessee parent representative, I saw the spectrum of parental finances. Like the single mother who works the night shift at the local convenience store. The parent who lives in a trailer. 

 

My behavior therapist friend serves rural clients who are indigent or nearly and  receive state funded health insurance from TennCare. Ironically--but not begrudgingly--so many of the rest of us go broke and can't afford that quality of care. I have friends who make decent salaries who have done less well than my family in securing out-of-pocket services. Our children's futures and our own are at risk as a consequence. We all bear scars from the battleground of profit-mongering insurance companies. Companies such as Blue Cross Blue Skrew and others live on to slay more poor schmucks and build new multi-million corporate headquarters and fatten the wallets of share holders!

We families with children who have autism are upper middle class. We are middle class. We are lower class. Financially, we are rich, poor and the levels in between. Financially, like our children, we are packed in all along the spectrum.

And then there's the upper class. I have friends in those greener pastures, too. Early on, by observation, I figured that a family had to earn about $500,000 annually to be able to live as they would normally--affording the vacations and other luxuries they would still enjoy if they did not have autism inhabiting their lives.  That said, I've watched these same families lay out inordinate expenses for in-home employees, special treatment rooms and inordinate amounts of exorbitant therapeutic equipment. They did blink at the costs to providing the optimum for their children.

I am grateful that one of these friends sternly and kindly reminded me: I and other parents might look longingly at what they can afford for their children and the rest of their lives, but they, like us, still struggle with autism. Money does not make the disorder go away--try as some might. And that is one of the reasons, I, and others theorize (and have observed) that the wealthy are one of the parent groups that often have the most difficulty accepting the diagnosis of autism. A magic wand, a perfect potion to make it all go away--cannot be bought. It does not exist. (Oh, yeah, yeah, one percent, diagnosed with milder form PDDNOS who get diagnosed before two and receive intensive early intervention. One percent. Speech difficulties or learning disAbilites still remain though a label is erased.)

Lest I sound scarcity minded here, anyone reading The Journey with Grace for any length of time, I hope, knows that I feel blessed with the Gift of my daughter in all that she is, in all the challenges that she brings, that I am gifted with the privilege of being her mother and that I am given the Gift to Live this beautiful (and challenging!) experience of Life! I feel blessed. I have a rich life--knowing that love and happiness are not bought. There's a roof over our heads and food on the table. I am Grateful.

None of that, however, makes financial challenges associated with autism disappear. And it's important to talk about it. I am at THIS end of the journey, or rather this juncture--because that's just the point. It's not an end here on the periphery of Adulthood. It's the beginning. A beginning with a severely diminished set of services and potentially even greater financial demands.

Again, I am privileged to have been supported by my daughter's father for many years to have mothering be my primary role. It was only in the last decade that I returned to my writing persona. This summer was a rude reminder of the serious challenges to working outside the home full time and consciously parent a child on the autism spectrum, especially one more involved more severe, such as my own. Very humbly and with great admiration I bow to the many mothers who do. I know that many have no other choice.

Our little kids with autism grow up. They become adults. They need jobs but many cannot work full time. If we recognize that we, as their parents will not live forever, despite our most earnest intentions, that some of us unapologetically do not want co-habitation with our children to last forever, then our children as adults also need housing. And help within that housing. Who pays? Certainly not Tennessee. In most cases. Three thousand families await acknowledgement that we exist and we must first qualify with a dual diagnosis of intellectual disAbility to receive Medicaid Waiver services.

Financially? It's a fiasco....

Here's a list of previous posts from "The Journey with Grace" featuring Autism parent friend and singer-songwriter Tammy Vice. I am pleased to insert that little bit of happy into this otherwise dark and real post. And that's just it. If we choose to live fully, we parents of children with disAbilities do find ways to embrace happiness. The state could do it's job and make it more universally easy to meet our many financial challenges.

Occupy Nashville

Dear Occupy Nashville, Thank you for fulfilling your civic duty, for telling your truth, for standing up for the little guys--most of us are they little guys. Thank you for being passionate, for being brave, for sacrificing for those of us who just cannot. Thank you for being peaceful, for honoring the Spirit of our uber friendly city. Thank you for giving voice to and living the change that must come. You are powerful, you are appreciated. Enjoy the scones and the clementines, Leisa A. Hammett, Sunday afternoon, Dec. 4, '11

Honestly? I wasn't sure quite what to make of the Occupy Wall Street movement at first. Or, for quite awhile. Especially when I learned it was a melange of political facets. But, over time, I began to digest the essence of the message and I applauded but stayed away even though many I knew were going there, some inviting me to join them. As a mother, I could not risk arrest. But Sunday, at the suggestion of a friend, I was able to deliver some grub to the hungry, grateful protesters.

I believe it is not coincidental that this American movement has formed now at the cusp of 2012. I have come to believe that 2012 is a precipice of change that must come, whether it is Arab Spring, routine environmental rape, corporate greed, or lack of consciousness on ALL OF OUR parts. I was interested to learn that many Europeans are fascinated by the Occupy movement. I gathered it was seen as a bit ironic that we, the land of plenty, the champions of democracy would have such unhappy campers (no pun intended) akin to much of the rest of the world, at least to the degree that is demonstrated by Occupy protesters nationwide. This, and 2012, are about the little people; the abused; the physical earth--even--demonstrating with its' own from of violent protest, saying, yelling: ENOUGH IS ENOUGH! We must have equality! We must have justice. For. Us. All...And. That. Is. Consciousness Rising!

Special thanks to my new friend Peter Burr, chairman of the Williamson County Democratic Party, for escorting me to Nashville's Legislative Plaza Sunday afternoon. I have walked the beautiful pathway to our state's capitol many times in my own pilgrimages to lobby our legislators on behalf of the rights of individuals with disAbilities, such as my daughter. I have stood listening to stump speeches by democratic party leaders. I have gone simply to admire and photograph the outdoor ambiance, architecture and statuary there. I have browsed the tables and booths of our city's beloved Southern Festival of Books. But, today, the view was different. Colored tents lined the periphery, and mostly young people, some of the most economically disenfranchised in our country right now, along with older compatriots, scattered about the plaza. I enjoyed the opportunity graciously granted to photograph the movement. Rock on, Folks! Power to the Little People! All 99 percent of us!

4YG

 

Sharing this via my amazing friend author Whitney Ferre @ CreativelyFit.com. If you're lucky enough to be in the lovely Pacific Northwest, Whitney, formerly of The Creative Fitness Center and Rumours Gallery and Wine Bars, packed her bags and moved there from Nashville this summer. (Sniff.) She's available to travel, speak and teach and via online classes for the rest of us, nonetheless. I'm enrolled in one of her classes now.

A little more about this video from the website www.fouryearsgo.org: "Take a stand to change the course of history. Humanity is on an unsustainable path, headed in a direction that no one wants—and there is limited time to turn things around. At the same time, the solutions and technologies to address this crisis already exist. What is missing is the commitment and will to act. FOUR YEARS. GO. is about generating that will."

Called to Love, Compassion & Community...

"And it is my hope that each one of you may experience the incredible gift of the friendship of people who are poor and weak, that you, too, may receive life from them. For they call us to love, to compassion and to community." --Jean Vanier

I'd say that Eunice Kennedy Shriver experienced that gift and lived boldly with love and compassion for the disAbility community. My post on her 2009 death and her remarkable contributions is here.

The photo of Shriver by David Lenz, above, was recently put on view and commissioned by the National Portrait Gallery, as part of the First Prize, Outwin Boochever Portrait Competition 2006.

Purple Healthcare 4 Autism: Some Things are Neither Red or Blue

"Jus' telling our truth," candidly explained my autism parent friend about the blog post featuring her family's healthcare plight. I cannot even recall now how I discovered the blog post excerpted with permission  below....Late 2010, I featured creative autism advocate Tammy Vice performing one of her songs about her journey with autism in a blog post entitled "Know the Hope."  Vice has even written a song about the issue below, called The Medical Insurance Blues, sung and performed--of course--blues-style.

Says Vice: "I've been very clear that I am not pushing anyone's political agenda.  I am speaking as a mother who wants real healthcare for her child.  This is how I would explain it to Morgan.  Some things are not only red or blue.  Heathcare is purple. In the disability world, we see things in a different light,...sometimes piercingly bright.  And if we don't talk about what we see, it will continue to be overlooked."

Wrote Vice, passionately urging legislators to support the Affordable Care Act--and why we need to all work together to protect this incredible progress we've made: “As a mother, I am asking you to please work together to protect health reform for my family.

photo of Tammy & Morgan Vice by Rebekah Pope from our book, From Heartache to Hope: Middle Tennessee Families Living with Autism

"My husband has worked at the same dealership for 11 years.  Each year we felt more helpless. While the price of our group coverage continued to rise and the deductible steadily went up from $500 per person to $5000 per person, the benefits actually decreased.  Because our daughter has autism, we had no other option but to stay in the group plan.

"This year the group coverage went up another $200 a month.  We found ourselves in a place where it was beyond what our budget could bear. And with the loss of the Chevrolet franchise at that dealership, my husband was forced to look for employment elsewhere.  This left us without group insurance, but thanks to health care reform, insurance companies could no longer turn down our daughter.

"In Tennessee, the insurance company was allowed to charge a 300% markup on Morgan because of the autism. The individual plan we were able to purchase actually costs us over $100 less than what the group coverage was charging for a similar plan with that same insurance company.      

"We still have a long way to go to get health care, the fact that we are no longer subject to a lifetime max that could bankrupt us, and the fact that our daughter can no longer be denied for coverage – gives us more control and freedom in our health care. Please don’t let this reform be taken away and give the control and freedom to deny and bankrupt us back to insurance companies.

Writes blogger Justin Wilkin: Tammy and her family aren't alone. In fact 2,800,000 Tennesseans have pre-existing conditions who, because of the Affordable Care Act, can no longer be denied by insurance companies access to the insurance that helps pay for their medication, treatment, preventative care, etc.

[...]This year, the Affordable Care Act [protected families] by eliminating all lifetime limits on how much insurance companies cover if beneficiaries get sick and bans insurance companies from dropping people from coverage when they get sick. The Act also restricts the use of annual limits in all new plans and existing employer plans this year, until 2014 when all annual limits for these plans are prohibited. This means even if you don't have a pre-existing condition - you now have more control and freedom over your own health care than you ever had before - thanks to the Affordable Care Act."

...But we all know that this is not a done deal and that...and I WILL be political...Republicans threatened to undo this Good. Let's follow Vice and speak up for Purple healthcare....

Campaign for Mental Health

Olutoko by Kathy Tupper, one of 27 artists featured in the book: Stories of Hope in Recovery and the Healing Power of Art from the Creative Arts Project of the Middle Tennessee Mental Health and Substance Abuse Coalition. Find the book at Twist Gallery and Gallery F.

 

I've been hit up. You? What I mean is spring's here and my wallet's getting thinner. But, actually...it feels good. This time a year my friends come a'callin', asking me to ante up for some very worthy causes.  Marathons for Tennessee Women's Theatre Project, Hooping the Half Music City Marathon for breast cancer awareness, Big Brothers, Big Sisters walk-a-thons, even a gulf coast photography/sailing expedition for the health of America's waterways. I keep a little tithing account. Ten percent. Just for these requests....

Two of my favorite people, one I featured here, and then my friend Sita Diehl came knocking on my virtual wallet for the same cause. Both passionately. So passionate was Sita for her cause, I'm sharing it with you because I think You need to hear what she has to say:

"When confronted with mental illness, it feels like the end of the world.  I know many NAMI [National Association for Mental Illness-Sita & my other friend's cause] members who, based on their hard-won wisdom, take the time to listen and care, offering information and encouragement to others who struggle with confusion and grief.  When individuals and their families are fortunate enough to get effective treatment and can pull together to support recovery, the person affected by mental illness has a much easier time moving forward into a fulfilling life.  NAMI support groups and educational programs have brought healing and insight to hundreds of thousands of families.

"But we have a lot further to go.  I also know many people who don’t get effective treatment, whether because it doesn’t exist yet, or they don’t have adequate health care coverage, or they don’t want to face it. Through advocacy for research, public funding and private health insurance parity, NAMI is making an impact even in these financially troubled times.  NAMI Walks, [Sita's cause for which I pulled upon the purse strings,] raises public awareness of how common and treatable mental illness is and spreads the word that recovery is very possible." [End Quote]

My friend Sita gets around. So much so I can't seem to keep pace with all her personal and professional endeavors to do good in our needy world. When I asked for an update, here's her reply:

"My title is Director of State Policy and Advocacy although under it all, I'm still a Mother from Hell.  Now is the time to act because widespread reductions in state and federal funding.  In Tennessee alone, TennCare will reduce community mental health funding by $25 million in FY [fiscal year] 2012 unless the legislature votes to restore the proposed cut, which would deal a critical blow to a system already weakened to the point of collapse. [Italics mine.] Federal enhanced Medicaid dollars will run out June 30, 2011 causing reverberations throughout the country similar to Tennessee, but much worse in some places. We thought mental health would be minimally affected this year when [Tenn.] Gov. Haslam presented his budget. Turns out the 1.5% TennCare provider rate cut comes ON TOP of the 7% narrowly averted last year with Medicare clawback funds (doncha just love the phrase 'clawback'? Snaaaarl! Hospitals and most types of physicians won't have rate cuts because of the continued 4% 'hospital coverage fee,' but mental health providers, transportation providers, home health, etc. will get the full 8.5% rate cut.

"This is the sound of doors being closed and windows shuttered.  Very sad....

"So if any of your blog readers have friends and neighbors in the Tennessee General Assembly, urge them to do whatever is necessary to keep TennCare whole."

And in the meantime, it's not too late to sponsor Sita. Won't you?

http://www.nami.org/walkTemplate.cfm?section=NAMIWALKS&template=/customsource/namiwalks/walkerpage.cfm&walkerID=151434    

 

Seeing Ourselves Through Unique Lenses: Holgas, Dianas & Exhibit

Who says photography isn't art? Does anyone still dare utter such poppycock these days? I'm in love with photoblog Chookooloonks. (Surprise.) Through the blog's photo-essayist creator, Karen Walrond, also author of The Beauty of Different, I've learned about some uber cool women across the country (many of them "the love bomb"). These women with whom I'd love to hang write thoughtfully, photograph beautifully and send out other forms of gentle love and inspirational art via the blogosphere.

So, when Nashville artist activist friend Andee Rudloff sent me news of a Holga photography exhibit sponsored by a current, yet another congressional-budget-cut-threatened-arts-organization--VSA--it was time to give that long-intended shout out to some of those bloggers whose work I admire and who also use toy cameras. They'd be Portland, Oregon's Andrea Jenkins of Hula Seventy. Nearing publication of this post, I couldn't find many examples, at quick glance of Holga photography on her site. I confess, it's been too long since I browsed there. (Starting a new household has altered my blogosphere habits.) A tweet confirms she does shoot with the camera I'd never heard of before I discovered the wonder of photoblogs out there on the wild web. Here's a google search about the camera and many mentions of Andrea. Regardless her blog is full of cool, especially the visual kind. Also of note for old-style yet fresh camera art, is Jenkin's lovebomb friend and amazing writer, storyteller and photographer Jen Lee of Brooklyn, NY. Known for piercing vulnerability in her writing, she illustrates her work with another camera which I'd never heard of, the Diana. (I blame my ignorance on the fact that I'm doing good to shoot a standard Olympus back in film days and now Canon and Nikon. Period.)

Back to Rudloff, who has roots in Bowling Green, Ky., where the VSA Kentucky ArtsACCESS Gallery today opens Seeing Ourselves: Photographs of Safe Haven. The exhibit features 22 color and black-and-white photographs taken by members of homeless families while living at the Safe Haven Family Shelter, including the one featured here. The exhibition provides insight into the human side of homelessness and was originally organized by the Frist Center for the Visual Arts in Nashville.  A photography workshop using Holga cameras will be facilitated by Rudloff, the exhibition curator, on Sat., April 16 from 9:30 a.m. - 12:30 p.m. at the ArtsACCESS Gallery.  The workshop fee is $25 and includes use of a Holga camera and disc of photos.  (The Seminar Slut may just have to tramp up there.)

"The photographs selected for Seeing Ourselves represent life patterns and happenings that are experienced by people, with and without disabilities, living in a variety of circumstances," said Rudloff who is the Frist Center's community relations manager. "Instead of simply documenting the conditions of homelessness, the images remind us that we all share common hope, dreams, and goals."  The photographs were taken by the residents of Safe Haven who were provided with a Holga 120N camera and invited to create images that reflected their thoughts and feelings about their lives now and in the future.

Exhibit organizers elaborate that the Holga 12N is a toy-like camera that uses medium format film to create 2 1/4 x 2 1/4 inch negatives.  Holga enthusiasts believe that flaws in the camera's plastic lens and body mechanics give images an appealing look.  Light leaks, vignetting, loss of sharpness, and other "imperfections" produce interesting colors, perspectives and unique effects to create works that transcend straightforward documentation.

Like Tennessee's award-winning chapter, VSA Kentucky provides arts education and inclusion programs for children and adults with disabilities throughout the state and offers an under-served population equal opportunity to explore the arts in a way that is fully accessible. And, also like Tennessee, VSA Kentucky is a member of the international network of VSA, an affiliate of the Kennedy Center for the Performing Arts.

Do you, like me, think it's crucially important to keep access to arts programs, such as those offered by Tennessee and Kentucky VSA organizations, the NEA and in our public schools? I know you do. Please spare a few moments to fill out this easy peasy online form to voice your important beliefs to your U.S. congressional representatives: http://paa.convio.net/site/Advocacy?s_oo=cbnd7-XV4i-n6tqoSouZEw..&id=329  (Thank you!)

A Celebration of Love

On the first Friday of February, a night of deep-black sky and a rude, coat-clutching chill, my heart was bathed in warm, joy-infused love as I attended my first commitment ceremony.

photo: cancunlover15

This is Nashville. Never. Ever. Ever. Short on musical talent. There's the folks who Made It Big. The folks still Making It Big. The folks who are About To Make it Big. The folks that Want to Make It Big and are Almost There But Not Quite. The folks that perform back-up to the Folks that Made it Big and are Making it Big. And the folks that Never Quite Make it Big because it's awfully dang hard to Make It Big in a City with so much Big Talent.

They were all there that night. Starting with the bag pipe processional with incredible acoustics in this incredible chapel. A female reverend and three other women draped in gorgeous silver and black long shawls, one groomsman sporting a short, gray pony tail topping his black suit, followed by the couple at the end, wearing black suits and red, satin vests and walking hand in hand. As observers, we watched. We listened. We rocked. We soared. We grooved. Our hearts and souls consumed the manna of wisdom and beauty from spiritual traditions of many cultures. Ancient and contemporary poems and scriptures were read in Native American, Gaelic, German and Spanish. The ceremony was an-hour-and-a-half long.

And though no public credit was given, I squeezed one hand of Husband 2.0's, with Grace sitting ever-so patiently in between us, and knew that we were there Friday night observing two life partners honor their 11-year commitment in this public ceremony because one of them had married us last July. Our friend and minister had said that until it became legal in this Buckle of the Bible Belt for a gay couple to say "I do," he'd waste no time on a ceremony for his un-legalized union. But, preparing our ceremony, he came to think differently. It was time to publicly honor his own union.

Here is what my friend wrote on the back of their 8x10 four-page program (italics and underlining mine): "While we know we are 'preaching to the choir,' it can't go unsaid that after this celebration of love, we will not be receiving the more than 1,100 federal rights and protections afforded married couples. These rights and protections include such important opportunities as filing our taxes jointly, receiving each other's pensions or inheritance without an enormous tax penalty; taking unpaid leave to care for one another should we become sick or injured and receiving spousal or surviving spouse benefits under Social Security. They are not special rights. Granting these valuable protections and privileges to same-sex couples does not undermine anyone else's relationship...."

It was a joyous and love-filled occasion to know that 250 of us filled the chapel to supported our friends' earnest partnership.The reception following was simple but perfect. Beve, a super-cool mobile coffee shop, served up the most perfect hot beverages.  And, double shout out to the Flourgirls who baked TEN cakes of every flavor that could please any sugar-lovin' pallate and for doing the right thing after a previous vendor refused the couple's business to "make a stand against two consenting men choosing to commit their love and lives to each other."

Times, they are a'changin. But not without resistance. Too often cloaked in prejudice, ignorance and misguided religiosity. Once again I'm reminded of Eckart Tolle's words in A New Earth. I paraphrase: as we journey into the next portal, there will be great resistance to keep things the same, status quo....

We see this in Politics. In Religion. Inssues of Race. And, in matters related to Equality.

Once again, as in all these matters, including disAbility, I'm reminded:

We. Are. ALL. ONE.

And so it is....

No Assumptions, Plz. Myth Busters R Here

Assumption Number One:

Yes, I've been Divorced. No, he was not/is not a scoundrel. No, I was not left Desperate. Destitute. Or, Deeply Depressed from The Big D.  We had a healthy, peaceful, professionally mediated Divorce. We conducted ourselves like adults and did not forget that our number one concern was the amazing child we co-created. Yes, Divorce, nonetheless, is very Difficult.

Assumption Number Two:

The Mother-in-Law is not a Witch. Yes, I've remarried. And yes, we have a different-looking family. It includes my Mother-in-Law. If you know me, you know I don't make flippant decisions nor did I get into this arrangement lightly. Yes, there are challenges. Life is challenging.

Assumption Number Three:

I am from the South so I believe like you. I may have grown up with you, gone to the same Baptist college as you and even once-upon-a-time the same church as you....This is about all I'll say right now, this post, this week. But I've written plenty about my spiritual journey on this blog here. My pilgrimage has been fleshed out so far and feels wonderfully authentic, unique and whole to me. Same goes for politics.

Assumption Number Four:

Yes, I have a child with autism. Well-intentioned people who wish to empathize with me, frequently make assumptions about what my life must be like. I'd appreciate a check-in first. Instead of assuming the worst of my autism experience, what about a generic inquiry, such as: "How is that for you?" Or, "What's that like?" I do not mind talking about our journey. I am not ashamed. I embrace my daughter, her autism, my life....If you inquire about her "placement" on the spectrum, I'd appreciate as one person asked me at a conference this weekend: "I realize it's a wide swath. How is she doing?" "Or, where is she on the continuum?" (Instead of an assumption.) I will readily tell you, regardless, that she is moderately severe and minimally verbal. Please do not follow up with: "Oh." Or, worse: "Oh, I'm sorry." I am not sorry. This is my Life. It's not all "Bad." I have a wonderful Life.

Number four is particularly fresh for me right now because I was asked this at least four times just this weekend during a weekend. I appreciate empathy. Just kindly find out first if I or others want or need to receive it, please. Thanks.

Any other Myths out there for Busting here? I'm working on busting what growing older looks and feels like....You?

MLK, 2011

I am reminded today of this post from two years ago on the cusp of the United States' first black president's adminstration. Lore has it that the following sentence was a viral text among the black community during Obama's campaign:

"Rosa sat so Martin could march. Martin marched so Obama could run."*

----------------------------------------------------------------------------------------------------------------

...Amen.

"Let Freedom Ring."

God Bless America!

...And, All The World's Nations!!

 

*AMENDED VERSION: See first comment, below.