NODCC Newsletter 
 May
 2015 

Thank you for your support of the NODCC! Our mission is "to enhance the quality of life and promote opportunities for individuals with a disorder of the corpus callosum and to raise the profile, understanding and acceptance of these disorders through research, education, advocacy and networking."

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May is Better Hearing and Speech Month!  

 

That means during May several organizations promote ways for individuals with communication disorders to improve communication techniques through tools and/or treatments.  The American Speech-Language-Hearing Association (ASHA) is committed to providing information to patients and professionals on ways to improve communication for a better quality of life.  Click on www.asha.org to find many resources about speech and language.

Kristine Lamb is an elementary school-based speech therapist.  Her May blog entry includes several great resources regarding speech and hearing.  Here is a portion of her blog:


"Did you know?retrieved from http://www.speakingofspeech.com/uploads/Week_1_BSHM_did_you_know.pdf

 

Did you know that delayed speech development is one of the most common symptoms of developmental delay in children? It occurs in 5-10% of all children.

 

Did you know that there are many factors that contribute to or cause communication disorders or deficits? A hearing loss, illness, injury, and congenital or psychological conditions are just some examples of such contributing factors.

 

Did you know the impairments that a Speech Language Pathologist can treat include voice, fluency, language and articulation disorders?

 

Did you know that because the structures used for speaking are the same structures used for chewing and swallowing, an SLP can also treat various feeding and swallowing disorders (often referred to as dysphagia)?"

 

Read more of Kristen Lamb's blogs at http://livelovespeechkl.blogspot.se/?m=1

 

Hearing impairments can impact children and adults in many environments.  School can be especially difficult. www.kidshealth.org  provides a special needs fact sheet for parents and teachers on what can be done to improve learning for children with hearing difficulties.   Cut and paste this link in your browser to access the checklist and find links to more information.  http://kidshealth.org/parent/classroom/factsheet/hearing-factsheet.html .

 

 

Disorders of the Corpus Callosum Awareness Day

July 2, 2015

We are looking forward to our first Disorders of the Corpus Callosum Awareness Day! To help celebrate the day we have some additional merchandise to help raise awareness.

 

Orders received by June 5th will be guaranteed to arrive before July 1st and will have free shipping!

 

 https://squareup.com/market/national-organization-for-disorders-of-the-corpus-callosum

 

 

This Months Apps!

 

Smarty Ears- is a family of apps that promote speech and language skills.  Apps cover a wide range of skills including:  language and vocabulary, articulation and phonology, social skills, and reading comprehension.  These apps are a bit pricey but well created.  They can be purchased through the iTunes store.

 

Have You Heard - is a quirky little kids interactive book app illustrating how rumors can start when information is misunderstood. As Farmer Blue's shopping list is passed along from animal to person, the items change depending on how the listener interpreted the message they heard much like the party game "telephone". The story and illustrations are cute; however the interactive elements are minimal. I was hoping to have something to interact with on every page. The narrator has a strong Australian accent and some of the vocabulary may be unfamiliar such as the use "gumboots" for "rain boots".  It is a cute app and the memory game at the end is good for targeting auditory memory of the story elements. The surprise item at the end definitely fits the bill.  Currently available through iTunes for $.99.

 

Book Recommendation

Sometime we need something that acknowledges the difficulties of parenting a special needs child yet honors our love for them as well.  A Special Kind of Love (Osborn and Mitchell) has stories as well as comments from the authors.   It also includes pictures of children and has a spiritual application throughout.

A Special Kind of Love by Susan Osborn and Janet Mitchell (January, 2004):  All children are special, but some children have special needs. Where do the parents of a "special-needs child" go for comfort? What other individuals do they know who share their daily struggles, while watching their child try to "fit" into a normal world? A Special Kind of Love: For Those Who Love Children with Special Needs is written for these moms, dads, grandparents, foster parents, and extended families who live with these children on a day-by-day basis. This book is also designed for teachers, doctors, social workers, friends of the family, and pastors who work with these children.

Laws & Links

 HIPAA HELP

 

While many of you are probably familiar with the privacy protections that the federal Health Insurance Portability and Accountability Act commonly known as HIPAA brought to your health information, you may be less familiar with the rights that patients received under HIPAA and the follow-up statute, Health Information Technology for Economic and Clinical Health ("HITECH").  This article will explore two of them.

 

You Right to Access Your Records - A Patient (and when I say patient, that includes the parent or guardian of a minor or incompetent patient) has the right to request access to their health information which includes both looking at the original records or obtaining a copy of their records on paper or in electronic format (a CD for example)in accordance with what the patient prefers and requests.  In addition to gaining access for themselves, they may also request access or a copy of their records (paper or electronic) be provided to another person or company that the patient designates.  There are some limits on the records that can be accessed.  For example psychotherapy notes are not available for access.  Normally, the heath care provider has 30 days to provide the patient with the requested access to or copy of their information, but they do have the right to deny a patient's request for access for a few specific reasons.  They must notify the patient of the denial and their reasoning within 30 days of the request for access.  Some of those reasons for denying access include the provider's belief that providing such access may cause substantial harm to the patient or another person.  If that is the reason given though, the patient may request to have that decision reviewed by another health care provider who was not involved in the original decision to deny access. 

 

While a health care provider may charge for providing copies of your records, those charges have to be based on their actual cost in making and providing the copies to you, but they cannot include a record retrieval fee.   A patient can also request a summary explanation of the records, but additional charges can be applied by the provider to that service. 

 

Opting-Out of the Patient Directory - Patients have the right to ask that they not be included in a patient directory when they are admitted to the hospital.  That means that if anyone calls or comes to the hospital and asks if you are a patient and/or what room you are in, the hospital will not be able to tell them that information.  It allows you to control who does and who does not know if you are in the hospital. 

 

Look for more information on your rights under HIPAA in the coming months. 

 

The Achieving a Better Life Experience ("ABLE") Act allows for the creation of tax free savings accounts for disabled individuals that could be used to assist in the payment of disability related expenses.  The Act was passed by the U.S. House of Representative on December 3, 2014.  It was passed by the Senate on December 16, 2014 and signed into law by the President on December 19, 2014.  States will be responsible for administering the ABLE Program, but no ABLE accounts can be established until regulations are issued by the U.S. Department of Treasury.  It is anticipated that states will begin to accept applications for ABLE accounts by the end of 2015.     



 New York Gathering

Plans for a New York family gathering on July 18, 2015 in Corning NY. Click on the link below for additional information.

www.alittlebitofsprinkles.com


Texas Gathering
Plans for a Texas family gathering on June 13, 2015 in Austin TX. Click on the link below for additional information.

Southern California Gathering
Save the date for a gathering in Fullerton, CA on Sunday August 8, 2015. As soon as we have additional information we will pass it along. For more information contact Barb at [email protected].

We have heard from families in Washington who would like to have a regional gathering in 2015. As soon as we have additional information we will pass it on to you. If you are interested in organizing a gathering in your area please contact Barbara at [email protected] and she will help get you started!

2016 NODCC Conference

We are very excited that plans for the 2016 DCC Conference are under way. If you are in the Chicago area and would like to join our Conference Team please contact Barbara Fonseca at [email protected].

Mark your calendars now to attend the NODCC's Disorders of the Corpus Callosum Conference in July 22-24, 2016! More details to come!