Tag Archives: Florida services

Letter to the Governor

June 16, 2015

 

Office of Governor Rick Scott

State of Florida

Lend Your Voice To Naples Equestrian Challenge Riders

Naples Equestrian Challenge (NEC) has an extraordinary opportunity to expand its equine-assisted activities and therapy programs, but we need your help and support!

Save Early Steps

‎The end of session is getting close and we still need the House to fund Early Steps with $6.9 Million to help more than 45,000 Florida families annually. Take some time today to call the Health Care Appropriations Subcommittee Chair Rep. Matt Hudson {(850) 488-1028} and Vice Chair, Rep. Richard Corcoran {(850) 488-8528}. Let them know that you want to see Early Steps funded at $6.9 Million! Help them understand how much Early Steps means to you and encourage them to view the Save Early Steps Facebook page to see the many family stories that have been posted. With your help we can Save Early Steps!!

Medicaid Covers Diapers, Still Great News Worth Sharing!

Medicaid Covers Diapers!  As well as programs which mirror Medicaid such as Title XXI which currently serves Riley for children who qualify.  Yes, some of you are saying to yourselves, “this is old news, where have you been?”  Some others are wondering  if I have lost my mind, because battles have gone on for years over diapers and not gotten anywhere.  Finally, in 2010 the complaintants started to win!
Effective September 1st, 2010, Florida Medicaid has begun covering disposable incontinence diapers for children ages four (4) through twenty (20). While we finalize the promulgation of the coverage and limitations criteria for these products through the Durable Medical Equipment and Medical Supplies Coverage and Limitations Handbook,please open and reference the Policy Criteria for Disposable Incontinence Briefs, Diapers, Protective Underwear, Pull-Ons, Liners, Shields, Guards, Pads,Undergarments”
Why, you ask do I mention this now?
Well, I’m glad you ask!
Diapers.  Perhaps as a parent of typically developing child you bemoaned the cost of diapers. Imagine a lifetime of purchasing those diapers in an ever increasing size and amount.  For my family, just a year ago, it was becoming impossible to meet the monetary demand and even just having the great supply needed on hand.  It was one of the many expenses of having a special needs child that could not be brought under control.
This past week I discovered just how easily special needs families may be left out of the loop.  First of all, If your special needs child is older than three years old, you are already well schooled in the fact that Medicaid flatly has refused to cover diapers and supplies for years despite continuing court cases leveled at the organization.  When finally, Medicaid was defeated in court,they did not go to all their consumers and invite them to purchase diapers on them.  I had opportunity to spend an afternoon with another special needs mom. In conversation, she mentioned her stress about diapers and needing more.  I let the mention pass the first time thinking she was recalling the financial stress of diapers from last year at this time.  The conversation returned again to diapers.  Yes, diapers is a popular subject among the special needs caregivers… little wonder.  The next time we spoke of diapers I did say something about the relief she must have not that Medicaid covers diapers,knowing her son had the coverage.  The look on her face stated clearly that I had lost my mind, everyone knows and has always known that Medicaid will not cover diapers.  Yes, I told her, it does now.  Immediately, we pulled up a medical supply company and made a request.  By the end of the day, 200 diapers were to be shipped out to her front door courtesy of Medicaid.  I do believe she was close to tears for the sheer emotion of this change by the time I left her.
Special needs families are so easily isolated. They do not sign up and involve themselves more than necessary.   It takes all of their energy to simply get through the day.  This describes my family as well.  So, I asked myself, how did I know about and take advantage of this incredible news?  Then I remembered.  Riley’s PIC social worker had made the announcement to us and I took advantage of it that very day.  I do believe my response was a wild dance in the middle of my living room.  Now I hoard diapers everywhere, when our entire supply is not used in one months’ time, I hide it for later.  Our country’s budget problems is something I am keenly aware of and I am not going to be suddenly caught without diapers ifI can help it.   How fortunate we are to have an organization looking out for our interests.
The stash beneath Riley’s hospital bed.
How unfortunate it never occurred to me to share this amazing news one year ago.  So, who cares if you sound foolish,it is so easy for special needs families to miss important news: Go tell everyone you know that “Medicaid Covers Diapers!”  Someone out there is going to be indebted to you for this little statement and very great news.
Please go out and share the news.
We are all special… by Stacie Wiesenbaugh

NEC Horse Show #2

It has been a very full week.  Yesterday was a wonderful today with so many birthday wishes, facebook is so much fun with all the attention on birthday’s.  Finished up the day collecting Riley from Camp Sunshine at Karl J. Drews then onto his horseback riding class at Naples Equestrian Challenge.  His instructor for the summer, Miss Robin, conducted an end of class song from all the families and volunteers present to sing “Happy Birthday” for me.  We headed off home, worrying car problems, but we’ll think about that tomorrow.  Chinese for dinner, our usual choice for celebrations.

Below Riley returns from the ring a little hot and tired.

Ronan had his last day of riding camp, it is an integrated program for special needs and typically developing riders.  I watched his second horseshow of the summer and took lots of pictures as instructed to share with Daddy.

Another camper receives his trophy!
Nick gets a cleanup before the day is over.
Then we headed out to visit Miss Rebekah and her family for a playdate.  Then up north again to collect Riley and by then we had all had it.  Perhaps tomorrow I’ll plan a real post, but I enjoyed sharing the experience in pictures for a change.
Please visit another blogger, Stress Relief for Caregives, she loves horseback therapy too!
by Stacie Wiesenbaugh

A letter from United Cerebral Palsy Regarding Medicaid

Friends,

Medicaid is under attack, and as supporters and members of the disability community, our voices must be heard. Mark Perriello, the new CEO of American Association of People with Disabilities, and I met with leaders in the White House yesterday to discuss potential cuts to Medicaid. We took several families, whose daily lives depends on Medicaid for support, to tell their stories.  They included:

  • Anna Liebenow, who has Multiple Sclerosis and relies on an aide to help her in and out of a wheelchair every day. Without Medicaid support, Anna is unable to volunteer, work, and lead a full, independent life.  With significant cuts to Medicaid, she’d stop working and stop paying taxes. That certainly won’t help our economic recovery.
  • Micah Hetrick is 22 and has Down syndrome. He recently received his high school diploma and volunteers in his local library. He has the assistance of a provider through Medicaid. Without this support, Micah’s mother, Sue, is forced to stay at home and is unable to work full time.
  • Linda Guzman is raising her 17-year-old son, Javi, while working full-time.  Javi, who has autism and Ehlers Danlos Syndrome, receives services through Medicaid, including medical care, an aide to be with him while his mother works, and training in the life skills he needs to achieve greater independence and reach his potential. These families put a human face on the issue, and show that this is not just about dollars and cents, but real lives.


Many people wrongly view Medicaid as “a huge government welfare giveaway to lazy people.” In fact, more than 8 million people with disabilities and their families benefit from Medicaid. What will happen to Anna, Micah and Javi if these services are cut?

The level of cuts range between $100 billion to $770 billion!! With Social Security and Medicare back on the negotiating table, Medicaid, which lacks a powerful constituency, will be lost in the fog. Our voices must be heard!

Please read more about this issue and join the conversation.  Millions need your help.

Please make a contribution today and keep us in the fight while sending a powerful message to Washington.

Thank you for your support.

Sincerely,

Stephen Bennett
President and CEO

And I also share off subject a Jack Black Video

Miami Disability Expo 2011

Masquerading

At the age of three, Riley began school due to the necessity for intervention services through IDEA.  Once Riley entered the school system’s Exceptional Student Education (ESE) I had the opportunity to focus on Ronan, just a year old at the time.

Santa Cruz Island Sea Lion’s by John Buck circa 2002.

Something happened that I had not experienced in three years; I could freely accomplish a task without the production and worry for Riley’s well-being.  Ronan became my constant companion .  It sounds a little more freeing than it really was because my mental state never stepped away and I was truly exhausted and listened closely for the school calls to my cell phone.  However, this could be valuable time for Ronan  I signed him up for Music Together an entire two miles away from Riley’s classroom.  Eventually we ventured even farther for Kindermusic at Naples Philharmonic.
Is there really such a creature as a “typically developing sibling?”  How can that be possible where the childs’ home life and family completely revolves around the needs of another.
How strange these sessions were to me.  At that time we still took turns to get Riley through every moment of the day and night.  My eyes were so tired I viewed the entire scene through a blur and it took every bit of strength I had just to get us there.  My child laughed and played alongside other children.   I had so little left in me it was a challenge to appreciate those very precious moments of my son’s joy.
Strangely, the other parents in the room did not seem to notice that we had nothing in common with them.  We were masquerading.  We were pretending to be a normal family for those very few moment of our lives.  We were so far from the family we appeared to be.
This feeling of pretense has never left me.  Without Riley by my side I am committing a deception on all those around me.

5th Annual VSA Florida Young Soloist Program

http://myemail.constantcontact.com/5th-Annual-VSA-Florida-Young-Soloists-Program.html?soid=1101500125910&aid=QVHZ80mDHDE

Diapers are everything and Day Number Six

What goes on with Riley’s healthcare coverage is inexplicable.  A few months back he was granted Medicaid out of the blue.  An application on his behalf had not been made in nearly a year.  Don’t mistake me… I’m grateful to have it for Riley.  Medicaid has been crucial to his well being.  And oh so happy that Medicaid finally sees fit to provide diapers.  I simply don’t understand why they give it to take it away three months later when the next application really was due.  Back to Title XXI… I hope.   Now Title XXI will share diapers too.  It’s all ok.  Just strange processes and clearly an ever dwindling budget.  Have diapers… I’m satisfied. 
Poor little Riley is on day six of the most recent illness.  Tomorrow is all about therapy.  Hope that happens.  He feels much better at the moment…. due to Miss Donna for dropping by for massage.

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