TAKE ACTION--an important post if you live in TEXAS!

I figured this was the best way to spread the word to our friends and family in Texas who have at least a passing interest in anything that might be related to the DS community. 

I received the following information from the Down Syndrome Association of Houston on proposed rate cuts for certain services and supplies provided by Home Health Agencies and Outpatient Rehabilitative Facilities provided by Medicaid.

The programs that are threatened with having funding cut are not ones that we currently use for Mara, but are ones we may need one day when she is no longer covered under our insurance.  We've signed her up for the wait lists of a number of these Medicaid programs already, as the wait time on those lists ranges from approximately seven to twelve years.  These programs may provide her with anything from housing in a residential/assisted living facility to covering various medical services and supplies, such as her glasses, orthopedics, speech, occupational, and physical therapies.  I know there are so many people out there who rely on these programs to maintain their standard of living right now and I am frightened to think of what this would mean for us (and, particularly, Mara) if we were at that stage.  I also think about the people being served by these programs now who didn't have as many opportunities or access to interventions that Mara has had, due to either our socio-economic status or the fact that she was born in 2011 and not twenty or even ten years earlier.  I think of how these programs provide people with so many crucial and necessary services that enhance their lives.  If you live in Texas and have the time and desire to send an email, please do so before Monday.   I'm happy to forward along the missive I just sent out if you'd like me to send it to you.  You can tinker with it to personalize it a bit and then send it out.

Thanks,
Catie

Oppose Proposed Rate Cuts!

Texas Medicaid Rate Cuts Will Have Devastating Affect on Persons with Disabilities

Rate Hearings are Scheduled for MONDAY (November 21^st)

Submit Written Comments —Details Provided Below

WHAT?
The Health and Human Services Commission (HHSC) is conducting rate hearings on November 21^st regarding Proposed Payment Rates to be effective January 1, 2012.  The Proposed Payment Rates slash rates for multiple, critical Medicaid services and supplies, including:

·         therapies (speech, physical, occupational) provided by Home Health Agencies and Outpatient Rehabilitative Facilities. 

To see the complete list of Medicaid services and supplies to be affected, go to: http://www.hhsc.state.tx.us/rad/rate-packets.shtml 
WHAT DOES IT MEAN FOR INDIVIDUALS/FAMILIES?
The proposed payment rates are significantly lower from current rates and there will be devastating outcomes for thousands of Texans.  Consider the following:

·         SERVICES PROVIDED BY HOME HEALTH AGENCIES & OUTPATIENT REHABILITATIVE FACILITIES—Payment rates for services provided by these entities are also being slashed (i.e. colleagues have calculated a 35% rate cut to Outpatient Rehabilitation Facilities and up  to a 45% rate cut to speech therapy).  The affected services include: therapies (speech, occupational, physical), psychology, dental, podiatry, durable medical equipment and many more.  While the services and supplies will continue to be in the Medicaid “service array,” the severity of the rate cuts will translate into fewer providers being available and willing to provide the services and supplies to children and adults in Medicaid.  Without the availability of these critical community based Medicaid services and supplies, thousands will be left with no other option that to seek care in emergency rooms and, even worse, institutions.

WHAT CAN YOU DO?
It is critical that you express your opposition to the proposed payment rates Monday (11/21).  In addition to stating your opposition to the rate cuts, it is even more important that you share your story in order to describe to HHSC how the draconian rate cuts will negatively affect your life or the life of your loved one(s).  Remember to include the following items in your letter:
         ·         State your opposition to the proposed rate cuts for     critical Medicaid services and supplies

·         Describe the services and supplies your receive and that will be affected by the rate cuts 

·         Describe what would happen if the rate cuts go into effect on January 1^st:

o   Will your provider be unwilling/unable to see you or provide the services and supplies you need? 

o   How will your health, safety and welfare in the community be negatively affected?  (Will you lose the skills you’ve acquired so far? )

o   Will you have to seek care from more expensive setting, such as an emergency room, nursing home or other state institution (State Supported Living Centers)?

SEND YOUR LETTERS TO: ESTHER.BROWN@HHSC.STATE.TX.US
 

Letters Regarding Rate Cuts to SERVICES PROVIDED BY HOME HEALTH AGENCIES & OUTPATIENT REHABILITATIVE FACILITIES MUST BE SUBMITTED TO HHSC BY MONDAY, NOVEMBER 21^ST. 

WHY IS THIS HAPPENING?
The Health and Human Services Commission (HHSC) is proposing the new, and much lower, payment rates in accordance with certain legislative mandates imposed via the state budget approved by Texas Legislators during the most recent legislative session (82^nd Texas Legislature, May-June 2011).  In the state budget, HHSC is directed via special instructions knows as “Riders,” to do the following:

·        Implement a budget cut of $88.3 million (state funds) in Durable Medical Equipment. This includes rate cuts and additional cost containment initiatives to durable medical equipment, and selective contracting for incontinence supplies.

·         Implement rate cuts in the new biennium (2012-13) that are in addition to the rate cuts implemented in fiscal year 2011.  These rate cuts include a 10.5% rate cut to Medicaid durable medical equipment, as well as rate cuts to multiple Medicaid program provided under the auspices of HHSC, the Department of State Health Services and Department of Aging and Disability Services.

·         More importantly, the health and human services agencies are directed to implement certain Medicaid Cost Containment Initiatives totaling $705 million in state funds or $1.7 billion in state and federal funds.   These initiatives have led to reductions in service plans for individuals in certain Medicaid Waiver Programs and include “Medicare Equilization.”  As it has been explained to us, Medicare Equilization occurs annually and consists of lowering or increasing Medicaid rates to match, as closely as possible, Medicare rates.  It is important to note that equalization efforts often result in the reduction of Medicaid rates. 

 

Thank you for taking action!

If you have any questions feel free to contact Tamara Ishee (governmentaffairs@dsah.org).

So cute, it's scary!!...and a 31 for 21 post!

Some pics from the Zebra Zone Halloween parade and Fall Festival, starring Miss M and Mr. A as Wonder Woman and a fireman!!

We missed the DS Association of Houston's Gathering of Friends today (Aidan took an epic nap and woke up too late), which we were bummed about, so I figured we'd post another link to our Buddy Walk page--almost a month away!!!

The Divine Miss M!

oh my goodness...and a 31 for 21 post

I'm assuming Mr. A learned his new catchphrase at school...

So, I've dropped the ball on my 31 for 21 postings, and the month is almost over.  My bad.  I just finished reading a book called A Good and Perfect Gift, which is a memoir written by a mom whose daughter has Down syndrome.  I was struck by how many of the author's experiences with this whole journey were so similar to mine...many were very different, as we are obviously very different people, but it was both striking and comforting how much of it resonated with me.  One passage in particular I liked was this one, which discusses an idea called "responsive parenting,"which I think relates not simply to children with disabilities/special needs, but "average" children as well.
Here's the passage:
"...most parents of kids with disabilities focused on their child's weaknesses.  Instead we should try to identify Penny's strengths and help her grow into these strengths.  That way she would maintain interest and enjoyment as she played, and we would recognize how capable she really was.  Ideally, the process would begin a happy feedback loop, where progress was made not because of fighting to get to the next goal, but because of getting to know our daughter as an individual who could do things in her way, in her time." (Amy Julia Becker)

I hope that I'll be able to keep this in mind with BOTH of my children--I know from my own personal experiences as well as those I've had teaching that kids are more willing to learn, able to remember things better, and profit more from something if they are interested in it, involved in it, and receive positive feedback on it.  Charts and averages don't give me a real indicator of my children's worth, just as an IQ test doesn't really tell me what they do and don't "know" or how smart they are; the happiness and feeling of self-satisfaction that lights up their eyes is what I hope to gauge their accomplishments by!

As my rascal boy said, oh my goodness.... I love them so!  Now off to iron--tomorrow is school picture day!

Eye Update and 31 for 21 Post! (Sub-title: The Agony and the Ecstacy)

Well, I meant to write a whole big celebratory post when Mara got her contacts.  I didn't find time to do it.  Apparently my hubris caught up with me!  She DID get the contacts and was doing really well with them.  We lost one of them one night for a few hours until I found it, miraculously, on a seat.  However, between our two eye doctors (one deals solely with the contacts, the other is the ophthalmologist who performed Mara's surgery, and it seems like ne'er shall the opinions of the two meet), the fit was in question--one thought they were too small, the other thought they were too big.  A smaller one was ordered for one eye.  Long story short, they have now both fallen out and cannot be found.  Boo!  We're ordering another pair and we're going to see how that goes (perhaps a sign that they were too big?  Who knows--girlfriend rolls and scootches on her belly like crazy, so there's no telling how or when they fell out and if making them smaller will help!)  We figure we'll try it once more and see how it goes. 

In the meantime, Miss Mara has been rocking her glasses, which she can't stand (but looks so cute in!)  They are just very stiff and unyielding so today I went to try to get her a pair of MiraFlex, which are those cute colored jelly-like specs you see on most little kids.  She just barely fits into the smallest pair of Solo Bambini, which are named "itsy bitsy"--pretty apropos (I laughed when I saw they just added a new style to the line--"The Rascal").  We ordered them in a very, very cute pale pink...and I must say, they may be even cuter than the last pair.  She was actually awake for this sizing, and was sitting up tall, staring through the empty rims!

I assume they'll still annoy her, but they should be more comfortable, as they do fit her better!  Oh, and they come with a croakies-like strap, so bye-bye, homemade bra strap! (The ladies at the eye store did compliment my ingenuity--if only the hot pink embroidery floss I used to keep them on wasn't fraying, it would have looked much more professional!)
 

'Till then, stay tuned for the next episode of The Amazing Adventures of Mister A and Mara B!

amazing adventure: rolling!

amazing adventure: riding the escalator!

thrills and chills at the train show!

non-stop action--and laughter--with grandma, who can always get our little mama to laugh!

Love, Squared and 31 for 21 Post #3!

Soo, I've obviously dropped the ball on my "31 for 21" blogging--I've always been a procrastinator but I assure you this is in no way indicative of my love, affection, and dedication to my children!  (Obviously!  I mean, spending too much time blogging would, inherently, be taking away from time with my children...I only don't feel guilty now because they are both passed out asleep and I'm on my third glass of wine...KIDDING!  KIDDING!  I'm not drinking, they are asleep).  Annnyway, here is my DS posting:
http://today.msnbc.msn.com/id/44703812/ns/today-today_health/t/down-syndromes-rewards-touted-new-test-looms/
This is a link to an article that a number of people sent me, most recently my father, that I liked.  It discusses the results of a study about quality of life for the families of individuals with DS, as well as those individuals themselves.  The results were overwhelmingly positive (obviously why I liked the article, while I figure it has to be somewhat biased--those families with higher-functioning children from a higher economical bracket were the overwhelming respondents, so it doesn't tell the whole story) for the parents and siblings of people with DS.  My fave line, though, was this:  "A third study evaluating how adults with Down syndrome felt about themselves reports 99 percent responded they were happy with their lives, 97 percent liked who they are, and 96 percent liked how they looked."  That's what I like to hear!  Wouldn't it be nice if so many other studies found similar numbers in our so-called "normal" population?!?!

Tell you what--I'm pretty happy with my life, who I am, how I look, and very certainly, the two little creatures I helped to create!  And now, I present photographic evidence that they feel the same way!  (Although Aidan's costume could indicate both delusions of grandeur slash wanting to be more than just a mild-mannered two year old boy...)  Watch the video at the end for some really good footage of Mara B smiling and laughing--Grandma and Pop-Pop managed to capture it while we were off gallivanting in Seattle!

Okay, so maybe this doesn't exactly illustrate her happiness, but damn, isn't she beautiful?!?

I absolutely adore this little man--he is so amazing and he makes everyone he meets happy!

life is good

Ranch Weekend 2011 and 31 for 21 Post #2!

Below are some pictures from the fourth annual 5K Ranch weekend in Brenham, TX (at least I think it's the fourth one--I do remember being there without children, which would make it four summers ago...).  While we missed some of the regulars, we had a fabulous time with everyone, especially since the weather cooperated.  Mister A had a great time running around with his buddies Isaac and Isla Mae, while Mara B and Bobby bonded, babbled, and held hands--until her big brother shoe-horned his way in...Mara B, your future boyfriends are in for it!  Thanks to the Faulks for having us and we can't wait to do it again next year!! 

Mara B is saying, "Whoa!  What is this outdoors air?  So foreign!" as she lets the wind waft through her pudgy baby fingers!

A devious pair of rascals!  Aidan eats all of Isaac's leftovers!  (aka anything with cheese or eggs)

Eskimo kisses

A noble oak

The two cowboys contemplating the day's events as the sun sets

Little boys are like puppies--you bring 'em to a new place, they must first run around  and get the lay of the land!

Beautiful sunset

Mara B has turned her head because she is NOT speaking to her brother--she can't believe he had  to butt in on some serious courting between her and Bobby!

A shot from before her overprotective brother hopped in to rescue her!  Get used to it, babydoll!

This is me, drinking coffee...alone...both babies are napping...ahh...

Elvis P, post-run

I finally kinda-sorta captured a smile from my little Cabbage Patch kid!

And a belly laugh!

Just a good, old-fashioned afternoon snuggle...

An idyllic scene (Isaac and Isla are planting sunflower seeds...we all can't wait to see what grows next year, if Bear doesn't eat it!)

Some serious dirt-dumping--future landscape architects?

The outlaws, hanging out during happy hour

While my lovely lady and I relaxed outdoors!

Can we say, "Wrapped around his finger already?"

There is SO much dirt that needs to be moved at the ranch--so glad A was there to do it!

The Papas and their girls!

Himself, once again in mid-stride

While Isla Mae happily snaps pictures, Mr. A surreptitiously gobbles up her sunflower seeds!

Luke, swarmed by the paparazzi

My posse

A mouthful of sunflower seeds--no wonder Bear is sticking so close to him!

Hats off to the ranch life!

Lights out after all of that hard-ranch livin!

Today's DS post!
Down Syndrome is the most frequently occurring chromosomal disorder, and  is not related to race, socioeconomic status, nationality, or religion (we like a disorder that doesn't discriminate!)
Individuals with DS are more like other people than they are different, except for that pesky extra chromosome. While the severity of cognitive and physical impairments varies from individual to individual, researchers are learning that the level of cognitive impairment is lower than previously thought and now characterize it as mild to moderate, with early intervention proving to be vital to their physical and cognitive growth.