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.

Established Status Epilepticus

 

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).

Established Status Epilepticus

 

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.

Established Status Epilepticus Trial at Nemours

 

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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).


Proposed Changes to Delaware’s Special Education Funds – A Call To Action!

May 28, 2015

Do you have a child with disabilities attending a Delaware public school? Then you may want to take action now, before your child’s special educational needs are put in jeopardy.

Calling All Delaware Families of Children With Disabilities!

The Delaware General Assembly is considering action that could result in the diversion of funds currently used to educate children with disabilities in our public schools. Contact members of the General Assembly’s Joint Finance Committee today and urge them not to take these funds away, so that the education of our children with disabilities is not jeopardized.

Delaware Special Education

Proposed Budget Change to Special Education Funding

The General Assembly’s proposed budget bill has language in its fine print that would allow some of the state’s school districts the “financial flexibility” to take money that is currently given to the districts for specific purposes, and instead use it for any purpose that the school district sees fit.

This is called Flexible Funding and could impact many Delaware public schools and the children with disabilities who attend these schools.

The Impact of Flexible Funding on Special Education

While some special education funds are protected from this Flexible Funding initiative, basic special education funds — the state special education dollars that are set aside for education of students with less severe disabilities — are included in the initiative and would be available for schools to allocate elsewhere.

The majority of students with disabilities in our public schools are educated with these basic special education funds.

Delaware Students With Disabilities

School districts receive these extra basic special education funds based on how many children with disabilities they report attending their schools. These extra funds were created by the state for the purpose of ensuring that students with disabilities, who are more expensive to educate, receive the educational resources necessary to help them fulfill their potential.

State budget approval of Flexible Funding will be detrimental for many students with disabilities!

Contact Your Delaware Representatives Today!

It is irresponsible, and ultimately harmful to children with disabilities, to allow schools to spend those dollars on other needs. The legislature’s Joint Finance Committee is considering the state’s budget bill right now, so we urge you to contact the members of the committee to let them know how important the preservation of special education funding is to you.

Delaware Special Education

When contacting a committee member, use the wording, Flexible Funding, to reference the special education funding in question.

The members of the Joint Finance Committee are listed below. Contact them today and voice your concerns.

Joint Finance Committee Chairs: 

Joint Finance Committee Members:

If you are concerned about the educational needs of students with disabilities, please send a letter and/or an email stating your disagreement to Flexible Funding to your representative NOW!

We Are Here To Help

Please contact Delaware Family Voices if you have any questions about the Flexible Funding issue, or would like guidance on how to have your voice heard. Our goal is to ensure the State hears all voices, and understands those issues vital to families of children with special needs.


Be Heard! Disability Day is April 2nd!

March 17, 2014

Wednesday, April 2nd, 2014 is Delaware’s 7th Annual Disability Day in Legislative Hall

Are you the parent of a child with special needs? Do you have questions about disability services offered in Delaware? Do you want to know more about how the state can assist you and your child?

Would you like to talk with your state legislator about living with disabilities in Delaware, to help him better understand the needs of a person with disabilities?

Then you need to attend Delaware’s 7th annual Disability Day in Legislative Hall.

Disability Day Delaware

Disability Day at Legislative Hall is your opportunity to hear what the state can do for people with disabilities. It is also your opportunity to ask questions, and to discuss in greater detail the needs of people with disabilities living in Delaware.

The Disability Day Agenda

Disability Day attendees will learn more about the state’s current position in a wide range of topics relevant to people with disabilities.

  • Family Support Waiver
  • Dental Care Insurance
  • Community First Choice Option
  • Money Follows The Person
  • Personal Attendant Services Funding
  • Transition Coordinators
  • Source of Income Discrimination
  • Disability Law Program – Special Education Advocacy
  • Accessible Transportation
  • Building Infrastructures and Supports Needed to Phase Out the Issuance of Subminimum Wage Certification

Details about each agenda item can be found at 2013-2014 Legislative Priorities. These legislative priorities also make excellent talking points during conversations with state legislators.

Disability Day Event Details

When: Wednesday, April 2nd, 2014

Time: 11:00 am to 3:30 am

Where: Legislative Hall, 411 Legislative Ave, Dover Delaware

Note: You must provide a valid photo ID such as a driver’s license to enter Legislative Hall.

Questions about Disability Day? Call the DDC office at (302) 739 – 3333.

Schedule Your Legislative Appointments Now

Are you interested in talking with your Delaware legislator about disability issues? Schedule an appointment now for Disability day to discuss your top disability issues directly with your legislator.

Delaware events

You are highly encouraged to schedule appointments in advance to secure time on Disability Day with your legislator. These links can help you navigate through the process of how to contact your legislator and schedule an appointment:

Remember – Your Voice Does Matter!

Your legislators are ready and waiting to hear from you. Yes, your voice really does matter!

Delaware Disability Day 2014

Check Disability Day at Legislative Hall for additional information on Disability Day and Delaware Developmental Disabilities Council for other upcoming DDC meetings and events.

Hope to see you there!

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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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Images:Delaware DDC and Bruno Buontempo via Flickr (Megaphone)


Partners in Policymaking – Making a Difference For Those With Disabilities

December 2, 2013

Are you the parent of a child with developmental disabilities, or a young adult with developmental disabilities?

Would you like to have an impact on public policies that could impact people with developmental disabilities? The opportunity to work side by side with State public policy makers to impart positive change?

Then you might want to consider the Partners in Policymaking program.

What is Partners in Policymaking?

The Partners in Policymaking is a program designed to give a voice to parents of children with developmental disabilities and young adults with developmental disabilities, empowering them to be a part of state-wide policy changes for people with disabilities. The program’s goal is to teach these parents and self-advocates the power of advocacy, and change the way people with disabilities are supported, viewed, taught, live and work.

Partners in Policy Making

Through the Leadership Training Program, Partners learn to become community leaders, and to work side by side with State public policy makers. Partners are provided with up-to-date information, education, and the skills necessary to help make change in public policy relative to the people who need and use disabilities services.

Check out the Partners in Policymaking Brochure for additional details.

NOTE – Applications to participate in the 2014 Partners in Policymaking are due by Friday, December 20, 2013.

Who are the Partners?

Partners in Policymaking are typically parents of children with developmental disabilities or young adults who have developmental disabilities. Each year Partners are selected to participate in the program through an application process.

Families with Disabilities

There is no fee to become a Partner in Policymaking. Additionally, the program pays for participants’ lodging and meals as well as other related expenses, while attending training sessions.

What Are the Expectations of Partners?

The goal of the Partners in Policymaking program is to learn information, strategies and skills to help further state public policies that affect people with disabilities.

Partners are expected to attend each of the eight two-day training sessions. Sessions are held monthly from February through September, and run from noon Friday until later Saturday afternoon.

Topics of discussion include:

  • History of Disability Movements
  • Inclusive Education
  • Community Supports and Supported Employment
  • Vision for Future and the Planning Process
  • Assistive Technology
  • Local, State and Federal Policy and Legislative Issues
  • How to Meet Public Officials and give Legislative Testimony
  • Community Organizing
  • Working with the Media
  • Holding Effective Meetings

For more information about Partners in Policymaking in Delaware, contact the Developmental Disabilities Council at 302-739-3333.

Delaware DDC

Ready to Be a Partner in Policymaking?

Partners in Policymaking are ready to take a stand and help implement change for those with developmental disabilities.

Are you ready to become a Partner? Download the 2014 Application for Participation and submit your application today.

NOTE – Applications are due by Friday, December 20, 2013.


Upcoming Parent to Parent Workshop: Support Parent Training

September 23, 2013

Would you like to become a trained Support Parent? Then attend Delaware Family Voices’ upcoming Parent to Parent Workshops.

What is The Parent to Parent Workshop? 

The Parent to Parent workshop is designed to train parents of special needs children to become a Support Parent. Once a parent has completed the Support Parent training, he/she can then be matched with parents of children with similar special health care needs, disabilities or mental health issues, providing them with much needed emotional support.

Support for Disabilities

Parent to Parent Workshop Details

The Parent to Parent Workshop is a two part training program dedicated to providing potential Support Parents with the training and information they need to be effective Support Parents to Referred Parents. The following workshop dates are open for enrollment:

Parent to Parent Workshop Part 1:

Monday, September 30th
9:00 am to 2:00 pm

Parent to Parent Workshop Part 2:

Thursday, October 3rd
9:00 am to 12:00 pm

Workshop Locations:

 Delaware Family Voices office
222 Philadelphia Pike, Suite 11
Wilmington DE 19809

Note: You do need to attend both Part 1 and Part 2 to complete the Support Parent training program.

Please RSVP by Thursday, September 26th to Delaware Family Voices. Questions? Call Erica Schetter at 877-235-3588 or email her at p2p@defv.org.

Child care reimbursement is available on request and a light lunch will be provided.

For additional information, refer to the flyer, Parent to Parent Workshop.

What is Parent to Parent?

Parent to Parent USA is a nation-wide organization dedicated to providing emotional and informational support to families of children with special needs. Delaware Family Voices is the approved Parent to Parent organizations for the state of Delaware. Learn more about the Parent to Parent program at P2PUSA.

Parent to Parent

We look forward to seeing you at the Parent to Parent Workshop. Please contact Erica if you have any questions.

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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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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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