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September 2012  

 
The NC Family to Family
Health Information Center
A Project of the Exceptional Children's Assistance Center
Home to Family Voices of NC
 

  

 Flu  

Influenza 
  

 Why are children at higher risk for getting the flu?

Children are more likely to get the flu or have flu-related complications because their immune systems are still developing. A recent Centers for Disease Control (CDC) study shows that treating children with the flu can be  costly.  Each year in the U.S. an average of 20,000 children under the age of 5 are hospitalized for flu-related complications. During the 2011-12 flu season, 26 deaths in children were reported to CDC. Severe flu-related complications are most common in children younger than 2. Young children, 6 months to 5 years, are at risk of  febrile seizures. Children with chronic health conditions such as asthma and diabetes have an extremely high risk of developing serious flu-related complications

 

�Por qu� los ni�os corren mayor riesgo de contraer la influenza?

Los ni�os tienen m�s probabilidades de contagiarse de influenza o tener complicaciones relacionadas con la influenza ya que su sistema inmunitario a�n se est� desarrollando. Un estudio reciente de los CDC muestra que el tratamiento para ni�os que padecen influenza puede resultar costoso. Todos los a�os en los EE.UU. un promedio de 20,000 ni�os menores de 5 a�os son hospitalizados por complicaciones relacionadas con la influenza. Durante la temporada de influenza 2011-12, se informaron 26 muertes de ni�os a los CDC. Las complicaciones graves relacionadas con la influenza son las m�s comunes en ni�os menores de 2 a�os. Los ni�os peque�os, entre 6 meses y 5 a�os, tienen alto riesgo de sufrir convulsiones febriles. Los ni�os con enfermedades crónicas como por ejemplo el asma y la diabetes tienen un riesgo extremadamente alto de desarrollar graves complicaciones por la influenza.  

 

Prevention

Vaccination is the best way to protect yourself from the flu. There are additional steps you can take to keep yourself and your family healthy this flu season.

  • Everyone 6 months of age and older should get vaccinated against the flu.
  • Take everyday precautions, like washing your hands, to protect your health.
  • If you are exposed to or caring for someone with the flu, talk to your doctor about preventive antiviral medications.
Prevenci�n

La vacunaci�n es la mejor manera de protegerse de la influenza. Tome en cuenta estas pautas adicionales para mantener a usted y su familia saludables durante esta temporada de influenza.

In This Issue
Newborn Screening
Discrimination Outcry
About NC F2FHIC
How to Join a Webinar

September is National Newborn Screening Awareness Month

 

According to the American College of Medical Genetics and Genomics, newborn screening and appropriate support and treatment improve health and saves lives. Testing all newborns for a 'core panel' of 29 genetic and congenital conditions helps identify serious complications.

 

Newborn screening tests take place before a newborn leaves the hospital. Most tests use a few drops of blood from pricking the baby's heel. A hearing test involves placing a tiny earphone in the baby's ear and measuring his or her response to sound.

 

Babies are tested to identify serious or life-threatening conditions before symptoms begin. Such diseases are usually rare. If a screening test suggests a problem, the baby's doctor will follow up with further testing. If those tests confirm a problem, the doctor may refer the baby to a specialist for treatment.  Following a doctor's treatment plan can save a baby from lifelong health and developmental problems. 

 

 

Discrimination Outcry

 

Two recent, high-profile cases of organ transplant denials are alleged to be due to the developmental disabilities of the individual seeking transplants.  A national outcry of discrimination has arisen from the denials. As a result, fourteen advocacy groups, members of the coalition known as the National Disability Leadership Alliance, are asking the U.S. Department of Health and Human Services to issue legal guidance to the nation's organ transplant facilities regarding their responsibilities under disability rights law. The group is also urging families to file civil rights complaints with HHS if they feel that they've been wronged by transplant decisions.

 

The parents of Amelia Rivera made national news when they said Amelia was denied a kidney transplant because of her intellectual disability. Children's Hospital of Philadelphia has since reversed its decision, and Amelia will receive a donated kidney from her mother when her own fails. In the wake of the immense outcry over Amelia's story, legislation was passed in New Jersey that would penalize any hospital that denied a transplant to a patient on the basis of intellectual disability.

 

In August, the family of Paul Corby said that Corby's autism diagnosis was cited when he was turned down for a heart transplant. His mother has taken her plea for a reversal to www.Change.org and is asking others to sign on in support of a change in the denial decision.

 

"This is clearly a very grave civil rights issue," said Ari Ne'eman, president of the Autistic Self Advocacy Network, who, with other advocates, met with top officials from HHS's Division on Transplantation late last month to ask that the agency take action. "We're talking about discrimination that is grounded in no medical justification. This is based on subjective decision making about quality of life," Ne'eman said.

 

Under the Americans with Disabilities Act and Section 504 of the Rehabilitation Act, health care providers are barred from discriminating against patients based on disability, members of the alliance say. However, the group of advocates is concerned that many providers may not be aware of the law. 

Save the Dates!!

 

Thursday, October 4, 2012: Bayada Pediatrics presents the 3rd Annual Special Needs Trade Show to be held at the Charlotte Motor Speedway in Concord, NC from10am to 4pm. It will consist of vendors who specialize in services for children with special health care needs as well as their families. To learn more about it call 704-549-1700 or follow the link below: 

 

Special Needs Trade Show

 

Saturday, October 20, 2012:  Innovative Approaches of Surry County presents the 2nd Annual Celebration of the Exceptional Child (Resource Fair) to be held at Elkin Municipal Park in Elkin, NC from 10am to 1pm. This will be a fun-filled day for families with games, activities, music and more. For more information, please contact Sharie Ray at 336-401-8501.

About NC F2FHIC

 

NC F2FHIC is a project of ecac, the Exceptional Children's Assistance Center and is funded by the US Department of Health and Human Services, Health Resources and Services Administration (HRSA). The goal of the NC F2FHIC is to help keep your child healthy by promoting regular medical care and to make the most of the benefits that are available for your child with special health care needs. 

The Family-to-Family Health Information Centers provide information and guidance to families raising children and youth with special health care needs (CYSHCN), professionals, and others around six national performance measures. These are 

  1. Families and professionals partner at all levels of decision-making.
  2. Families have access to comprehensive health and related services through the medical home.
  3. Children receive early and continuous screening, evaluation, and diagnosis.
  4. There is adequate public and/or private financing of needed services.
  5. Community services are organized so that families can use them easily.
  6. There is successful transition to all aspects of adult health care, work, and independence.)

 


How to Join us for a Webinar!

 
To join  a HIC webinar or for additional information, call Yolanda toll free at
1-800-962-6817
 ext 335.
There are two ways to participate in a webinar:

(1). You can join us as an individual at your computer listening  over the phone using our toll free number .

(2). Or, you could bring together parents and/ or staff and view the webinar as a group in a large room such as the media center or computer lab using a speaker phone.
 
If you have questions give us a call! 

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