Established Status Epilepticus Treatment Trial at Nemours

June 8, 2015

Do you have a child who experiences Established Status Epilipticus? Then you need to know about the Established Status Epilepticus Treatment Trial, ongoing now at Nemours DuPont Children’s Hospital in Wilmington DE, as well as other children’s hospitals across the country.

Seizure Study Enrollment Opportunities

Nemours duPont Hospital for Children’s Emergency Department is participating in a nationwide emergency seizure study titled Established Status Epilepticus Treatment Trial – ESETT.

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The goal of the study is to find the most effective anti-seizure medication to stop prolonged seizures. Any patient over 2 years of age may be eligibile for the study. Once enrolled on the study, a patient would receive one of three commonly used medications to stop the seizure.

What is Established Status Epilepticus?

Status Epilepticus (SE) is defined as a seizure or recurrent seizures that last more than five minutes without stopping or the person waking up. A person whose seizure does not stop after receiving a full dose of anti-seizure medicine is considered to have Established Status Epilepticus (ESE).

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There are approximately 120,000 – 180,000 episodes of SE each year in the United States. About one third of SE patients continue to have a seizure that will not stop and are considered an ESE seizure.

Why Have an ESE Treatment Trial?

Emergency Department care of Established Status Epilepticus (ESE) is not always the same across all hospitals. Doctors use their best judgment, but it is not known which treatment will work best. The best possible outcomes for patients with ESE are likely to depend upon a treatment that rapidly stops their seizure.

The purpose of the ESETT study is to find out which of three commonly used medicines given to a patient in the Emergency Department for ESE – phenoytoin, valproic acid, or levetiracetam – is safer and more effective for stopping the seizure.

What are Possible Benefits of an ESE Trial?

It is not known which treatment is best for treating Established Status Epilepticus. A person enrolled in the study may receive a better medicine to treat their seizures.

People who experience an ESE type seizure in the future may also benefit from the knowledge gained by this ESE Treatment Trial study.

Learn More About the Nemours ESETS Trial

Please visit www.nemours.org/ESETT or email ESETT@nemours.org to learn more about this opportunity to improve how ESE is treated in the Emergency room.

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The Established Status Epilepticus Treatment Trial (ESETT) study is part of the Neurological Emergencies Treatment Trials (NETT) and Pediatric Emergency Care Applied Research Network (PECARN) Networks. Both Networks are funded by the National Institutes of Health (NIH).

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Health Insurance Marketplace Information You Want To Know

November 5, 2014

Do you or someone you know plan to use the Health Insurance Marketplace to purchase health care coverage in 2015? Are you prepared to navigate the Marketplace to find the health insurance plan that best fits you and your family needs?

Health Insurance 2015

Here is a short guide to changes and improvements at Healthcare.gov and the Health Insurance Marketplace to help you successfully navigate the Health Insurance Marketplace and find your best-fit health insurance.

Healthcare.gov – A New & Improved Website

The Healthcare.gov website has gone through a complete makeover just in time for the 2015 Enrollment period. The website has been updated and revised, making it much simpler for first-time users to navigate the site and complete the enrollment process.

One vital improvement? Most first-time applicants will be able to use a shorter, simpler online enrollment application, with fewer pages, mouse clicks and questions to navigate. This not only streamlines the application process, but should result in less applicant frustration.

Check out the new and improved Healthcare.gov website for yourself.

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Para le gente que habla espanol – QuidadoDeSalud.Gov.

New Insurance Providers To Choose From

The Health Insurance Marketplace will have several new health insurance providers selling plans for the 2015 coverage year. To date, there has been a 25% increase in available health insurance providers, giving Marketplace applicants more options to find a health insurance plan that best fits their health care needs.

More health insurance providers is a win-win for everyone! Not only will consumers have more options and more choices for 2015, additional health insurance providers also means more competition. More competition can lead to potentially better pricing options for consumers and possibly saving them money on their 2015 plan purchases.

Most People Can Find an Affordable Plan

The Marketplace provides health care plan options at a variety of price levels, allowing most customers to find an affordable plan to match their needs. Last year, most adults with low-to-moderate incomes (less than $28,725) who applied for insurancee were able to find a plan with a premium less than $125 a month for individual coverage.

The same results are expected this year. Using the Marketplace is a good way to ensure you and your family will have 2015 health care insurance, at prices you can afford.

Are You Ready for the 2015 Marketplace Insurance Enrollment?

The Healthcare Insurance Marketplace is only open for a limited time, so mark your calendars. You don’t want to miss those key enrollment dates if you plan to purchase 2015 health insurance through the Marketplace.

Other information to help you better prepare for the 2015 Marketplace insurance enrollment include:

And, if you plan to use the Marketplace for your 2015 health insurance, consider signing up to receive important Open Enrollment news and updates. By registering for either email or text notifications, you can keep on top of key enrollment dates, pricing and plan information.

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With this information, you are now ready to complete your 2015 Health Insurance Marketplace enrollment.

We Are Here To Help

Delaware Family Voices is here to help answer your questions before, during and after the Open Enrollment period. Please contact us and let us know how we can help you.

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Images from Healthcare.gov.


Medicaid Managed Care and Mental Health 2014 Call Schedule

February 3, 2014

Do you have questions or concerns regarding your Delaware Medicaid Managed Care or Mental Health Care organization? Consider joining Delaware Family Voices, other families, and a wide variety of Delaware health care professionals in our monthly Medicaid Managed Care and Mental Health conference calls.

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These parent run conversations provide you the opportunity to ask questions, air grievances, or simply listen and learn. Our non-adversarial discussions are designed to help resolve your medicaid health care and mental health questions and concerns

The 2014 Medicaid Call Schedule

Calls are held the second Tuesday of each month from 11:00 am to 1:00 pm, EST, with the focus rotating monthly between Medicaid Managed Care and Mental Health coverage.

Medicaid Managed Care Call Schedule

Medicaid Managed Care calls address questions and concerns of families of children and youth with special health care needs who receive Medicaid Managed Care benefits. Families and representatives from Medicaid, Delaware Physicians Care Inc., United Healthcare and other agencies participate in these calls. The 2014 call dates are:

February 11th
April 8th
June 10th
August 12th
October 14th
December 9th

Medicaid Mental Health Care Call Schedule

Medicaid Mental Health calls address questions and concerns of families with children and youth who have mental health and behavioral/emotional needs. Families and representatives from the Division of Prevention and Behavioral Health Services, Disability Law, Medicaid, Delaware Physicians Care Inc., United Healthcare and other agencies participate in these calls. The 2014 call dates are:

March 11th
May 13th
July 8th
September 9th
November 11th

Note: Do you have specific Medicaid questions, concerns or issues that you would like addressed during a call? If possible, please email Delaware Family Voices prior to the call. It will help us be better prepared to help you as well as ensure we have the necessary professionals available during that month’s call. Please place either ‘Medicaid Managed Care’ OR ‘Children’s Mental Health’ in the subject line of your email.

NOTE: Monthly calls are focused on either Medicaid Managed Care or Mental Health coverage, however you can ask your Medicaid question regardless of the monthly call focus.

How To Participate In a Call

Mental Health Panel Calls

All calls begin at 11:00 am EST and last until 1:00 pm. Calls may end earlier if all questions are answered.

To join a call, follow these dial-in instructions.

Dial 1-800-391-2548
Enter Participant Code: 53192759#

You should now be connected into the call.

For additional information, instructions on how to participate, or to be added to the call reminder list, contact Ann Phillips at annp@defv.orgor refer to the Medicaid Managed Care / Mental Health Calls Flyer.

Need Help Now?

Call us! You don’t need to wait for the Medicaid calls to voice your concerns or ask for assistance. Families are encouraged to call Delaware Family Voices whenever they have medical or mental health questions or concerns. Please call 302-669-3030 for immediate assistance.

Delaware Family Voices

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Delaware Family Voices is a 501 C3 Non-profit organization. Consider Donating to our organization and help support Delaware families in need.

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QuestionBox image via JaredCherup at Flicker.

Medicaid Managed Care And Mental Health Calls – July to December 2013

July 8, 2013

The July through December 2013 schedule of Medicaid Managed Care and Mental Health calls is now available.

Managed Care Panel Calls

Join Delaware Family Voices, other families, and various health care professionals in monthly parent-managed conference calls on Medicaid, managed care and mental health concerns.

Through these call-ins, families and professionals work together to address questions and issues families might have regarding mental health, Medicaid, and managed care. Representatives from the Division of Prevention and Behavioral Health Services, Disability Law, Medicaid, Delaware Physicians Care Inc., United Healthcare, and other agencies will be available during the calls to personally address your questions and concerns.

Panel calls are held the second Tuesday of each month from 11:00 am to 1:00 pm, EST.

Medicaid Managed Care Calls

Do you have an issue or question regarding your Managed Care organization? This parent run bi-monthly call provides you the opportunity to ask questions, air grievances or simply listen and learn more about Medicaid managed health care.

2013 Managed Care panel call dates are:

August 13th

October 8th

December 10th

Mental Health Care Calls

The Mental Health Care Panel call address the needs and concerns of families with children who have mental health, behavioral, or emotional needs. This bi-monthly call provides families the opportunity to ask questions related to children’s mental health and behavioral needs.

2013 Mental Health panel call dates are:

July 9th

September 10th

November 12th

Participating In a Panel Call:

All panel calls start at 11:00 am EST and typically run until 1:00 pm. To join a call, follow these dial-in instructions.

Mental Health Panel Calls

Dial 1-800-391-2548
Enter Participant Code: 53192759#

You should now be connected into the call.

Do you have specific questions or concerns about your child’s Medicaid, managed care coverage, or mental health issues that you would like addressed during a call? Email Delaware Family Voices prior to the call date. This will provide us the opportunity to better address your question or concern.

For additional information, instructions on how to participate, or to be added to the call reminder list, contact Ann Phillips at annp@defv.org, or refer to the Managed Care / Mental Health Call In Flyer.

Need Help Now?

Call us! You don’t need to wait for a panel call to voice your concerns or ask for assistance. Families are encouraged to call Delaware Family Voices whenever they have medical or mental health questions or concerns. Please call 302-669-3030 and we will provide you with immediate assistance.

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Delaware Family Voices is a 501 C3 Non-profit organization. Consider Donating to our organization and help support Delaware families in need.

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Delaware Family Voices Launches New Website!

June 13, 2013

It’s a whole new look for Delaware Family Voices online. Check it out!

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A New Design, A Valuable Resource

The Delaware Family Voices redesigned website has made it’s debut. This new and improved website is a treasure trove of information and resources on a wide variety of topics important to you and your family. Find helpful links, valuable resources, and tips of all kinds, all right at your fingertips. Website pages include:

The new website also includes dedicated online request for information options for each of our Programs, making it even easier for you to contact us with your specific needs.

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Bookmark the website, then check back frequently for fresh, new and relevant information.

Helpful information is all around us. If you have a resource you think we should consider including on the website, let us know. Help us help others!

We are confident you will find the new Delaware Family Voices website a valuable resource, but if you do find an error or a link that doesn’t work, please let us know. Launching a brand new website is lots of work, and we are still tweaking and fine-tuning the website.

So come on over, stop by, check out the new website, and get to know this valuable resource.

Our Website Is Your Website

Would you like to share your story about how Delaware Family Voices helped you? Let us know! The website includes a whole new feature dedicated to our families. Leave us a message if you would like to take part in a photo or video display that will be featured on the website. More details will follow shortly about this exciting volunteer activity.

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We encourage family involvement in all our projects, including the website. And remember – Delaware Family Voices is here to help you with your medically complex child’s health care and behavioral health needs. Call us with your questions.

So what do you think? Do you like our new online home? Let us know in the Comments section below. We’d love to hear from you.

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Delaware Family Voices is a 501 C3 Non-profit organization. Consider Donating to our organization and help support Delaware families in need.

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Join The Effort – Speak Now For Kids Family Advocacy Day

March 26, 2013

Do you have a child receiving health care at a children’s hospital? Would you like to let your congressional representatives know just about how important your children’s hospital is in the care of your child? Have your voice heard! Attend the Speak Now For Kids Advocacy Day this June.

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Speak Now For Kids Family Advocacy Day

On June 19th and 20th, patients and families from children’s hospitals across the United States will gather in Washington DC for the ninth annual Speak Now for Kids Family Advocacy Day.

Join other families and children’s hospital representatives as they meet with our country’s lawmakers with the like-minded goal to advocate for and raise awareness of children’s health issues.

This is your opportunity to tell your congressmen and women how important your children’s hospital is for you and your family. Families attending the Speak Now event will have the opportunity to share their stories with legislators and the media, and to discuss just how important children’s hospitals are to all children.

See what families who attended last year’s event had to say.

Speak Now For Kids Event Highlights

Speak Now for Kids opens on Wednesday, June 19 with a jam-packed day of fun activities, interaction with the local media and educational meetings to prepare families for their day on Capital Hill. Top off the day with a celebratory dinner, complete with music and family friendly activities sure to keep the kids entertained. Mingle and meet other like-minded families while enjoying a relaxing night of food and fun.

Thursday morning, June 20, families and hospital representatives will head to Capital Hill to meet with legislators and their staff. This will be everyone’s opportunity to share their own stories, and to let legislators know the importance of quality child health care. Lunch will be served in one of the Senate Office Building.

For complete Advocacy Day program details, go to 2013 Children’s Hospital Association Speak Now For Kids Advocacy Day, where you will find hotel and travel information, schedule of events and links to registration forms.

Speak Now Is Your Opportunity To Be Heard

Are you interested in attending the Speak Now for Kids Advocacy Day? Registration for the event is now open. Families interested in participating should contact their children’s hospital and ask to be connected with the hospital department that handles federal affairs. You can also call Speak Now directly at 703-797-6011.

All registration materials must be submitted no later than April 5, 2013.

Learn more about the Speak Now For Kids Advocacy Day and how you can join this effort.

“Nobody can tell the stories of children’s hospitals better than those who serve and are served by children’s hospitals.”

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Speak Now is an event sponsored by the National Association of Children’s Hospitals And Related Institutions (NACHRI) and the National Association of Children’s Hospitals (NACH), a part of the Children’s Hospital Association.

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Delaware Family Voices is a 501 C3 Non-profit organization. Consider donating to our organization via United Way #12691.


A Healthy Life Without Limits Health Fair 2013

March 13, 2013

Do you have a child with special health care needs? Would you like to learn more about resources available in Delaware that could assist you in the care of your child? Would you like to connect directly with the people at organizations that can help?

Then you might want to attend A Healthy Life Without Limits, A Health Fair for Children with Special Health Care Needs, Saturday April 6th.

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A Health Fair for Children With Special Health Care Needs

This collaborative project between United Cerebral Palsy of Delaware and The Brain Injury Association of Delaware is specifically designed to connect families to the help and services they need to better manage their children’s care. While at the health fair, you will be able to learn more about services available throughout Delaware as well as talk directly with the organizations themselves.

Don’t miss this must-attend event! It’s free to attend and open to the public. There is no need to pre-register. Specific event details are:

Saturday, April 6, 2013
10:00am to 4:00pm
DoubleTree Hotel
700 N. King Street
Wilmington, Delaware

Delaware Family Voices will be at the event, so come on over and see how we can help  you and your family.

For more information email info@ahealthylifewithoutlimits.org or call 302-764-2400.

Will you be attending the 2013 A Healthy Life Without Limits Health Fair?

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A Healthy Life Without Limits is presented by United Cerebral Palsy of Delaware and The Brain Injury Association of Delaware, and is made possible with a grant from Family SHADE.

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Delaware Family Voices is a 501 C3 Non-profit organization. Consider donating to our organization via United Way #12691.