Happy 4th of July!

July 2, 2013

From the Delaware Family Voices family to your family, wishing you and yours a happy, safe, fun 4th of July weekend!

Happy Independence Day!

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Where will your 4th of July celebrations take you?

We are all enjoying family time. How about you? What are you doing for your 4th of July? What’s your favorite July 4th activity? Let us know in the Comments section below.

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Statue of Liberty image from DerekJensen via Wikimedia Commons. Fireworks images from bayasaa and NigelHowe via Flickr.


Join DE Family Voices At Our Open House!

June 19, 2013

Delaware Family Voices is hosting an Open House on Tuesday, June 25th, 2013. Join us for a day of snacks, fun, information & networking. Take a tour of our new office space, meet and get to know our staff, and how we can help families.

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Everyone is welcome! We encourage families and professionals alike to stop by and get to know all we have to offer.

DE Family Voices Open House Details:

When: Tuesday, June 25th

Time: 11:30am-4:30pm

Where: 222 Philadelphia Pike, Suite 11, Wilmington, DE 19809

Please use outside entrance (Facing Giorgi Kitchens).

For further assistance with directions, please call Delaware Family Voices at (302) 669-3030

If you have old Delaware Family Voices brochures, kindly bring them with you. We will swap them out for new brochures that reflect our new address and phone numbers.

We hope to see you on Tuesday!

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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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Child Health Day

September 29, 2011

Monday, October 3, 2011 is National Child Health Day. This year’s theme is Helping Children Lead Healthy Lives. The Health Resources and Services Administration (HRSA) has created a website for National Health Day. You can access the website by clicking here. The following is a message about National Child Health Day from Jon L. Nelson, Acting Associate Administrator for Maternal and Child Health:

I wanted to let you know that next Monday, October 3, 2011 is National Child Health Day.  This year’s theme is Helping Children Lead Healthy Lives.  A HRSA website was created at to feature important resources that assist families in finding health care services.  Resources featured on the website include the 311 Prenatal Hotline, Insure Kids Now, Family-to-Family Health Information Centers, Text 4 Baby, Find a Health Center Locator and the Maternal and Child Health Program. 

On National Child Health Day, we will feature the services within MCHB and HRSA that serve the health and well-being of children.   And for that reason, I would encourage you to share the website with your grantees.  Upon visiting the website, grantees can download the Child Health Day Badge.  The badge gives grantees the ability to link to the website.  It is our hope that we can reach thousands of families to assist them in finding vital health care services.  Thank you for helping us get the word out about this day and the resources available to our children.

On this 83rd annual celebration of Child Health Day, HRSA reminds you of maternal and child health programs that help children lead healthy lives everyday.

3-1-1 BABY for Prenatal Services

800-311-BABY (2229) En espanol 800-504-7081
Every year nearly one million American women deliver babies without receiving adequate medical attention. If you are pregnant, programs in your State can help you have a healthy baby.

3-1-1 BABY for Prenatal Services


Insure Kids Now!

Children enrolled in Medicaid and State Child Health Insurance Program plans may still face significant challenges accessing health care, especially oral health care. This website connects families with their State programs and with oral health providers who accept the plans.

Insure Kids Now!

Find a Health Center

HRSA-supported health centers provide affordable primary care to children and adults, whether or not they have health insurance. With more than 8,100 sites, health centers are in every State, the District of Columbia, Puerto Rico, the U.S. Virgin Islands and the Pacific Basin.

Find a Health Center

Family-to-Family Health Information Centers

Family-to-Family Health Information Centers in every U.S. State and the District of Columbia provide information, training, technical assistance, and peer support to families of children with special health care needs. National Center for Family ♥ Professional Partnerships helps families locate services.

Family-to-Family Health Information Centers

Text 4 Baby

Text the word baby to 511411 (envia bebe al 511411) for free weekly text messages that will support you through pregnancy and the first year of baby’s life. Topics include prenatal care, labor signs and symptoms, nutrition, breastfeeding, safety, infant and child development, and more.

Text 4 Baby

Title V Maternal and Child Health Program

The Nation’s oldest Federal-State partnership, for more than 75 years, has provided a foundation for ensuring the health of the Nation’s mothers, women, children and youth, including children and youth with special health care needs, and their families.

Title V Maternal and Child Health Program


CDC Survey Announcement:

September 14, 2011

From Family Voices:

If you are a family of a child with special needs,  CDC would like to hear from you!   

Dear Family Members:

Family Voices  is partnering with the Centers for Disease Control (CDC) in a campaign to learn from families of CYSHCN about their knowledge, attitudes and beliefs related to influenza prevention and treatment.

Please take time, right now if possible, to complete a brief survey (about 15 minutes).

To access the survey in English, please go to:

http://www.orau.gov/caregiver-flu-survey/

 

 

To access the survey in Spanish, please go to:

http://www.orau.gov/caregiver-flu-survey/Spanish-Version/

Your knowledge, opinion, and experiences are very important and will help CDC in their work to improve the health and well-being of all children with special healthcare needs.   Your responses will remain anonymous.

More information about this survey may be found in the CDC Invitation letter athttp://www.fv-ncfpp.org/files/5413/1548/8799/CDCInvitationSurvey.pdf.

Please contact Nora Wells (nwells@familyvoices.org) with any questions about this effort.


Event Announcement: Got Transition Radio Show

September 14, 2011

The first Got Transition Radio Show will be held through GoToWebinar on Wednesday, September 28th from 3:00- 3:30pm. If you have any questions about joining this webinar please contact us and we will be able to assist you.

From the National Health Care Transition Center:

Got Transition Radio Episode 1: Why this, why now- and what does it mean for me?

Has this ever happened to you?

Did you go away to college and in the first month had to go to a health clinic and then realize, “Wait… I don’t even know how to make my own appointment?”

Have you been in school and needed to take your meds during lunch but just didn’t feel like leaving your group to go see the school nurse?  Did you figure it out or just simply skip your lunchtime dosage?

As you transition to a time of your life when you are more independent, this includes taking charge of your own health.  This is called Health Care transition and it’s a big deal!   That’s what this Radio Show is all about.

Whether you are a young person trying to figure out this whole transition thing, a parent trying to support your kid, or a healthcare provider who wants to make sure your patients are getting the most from your care, don’t miss this opportunity. You will be a part of some fresh, honest discussion, and have a chance to share, learn, and get your questions answered!  Health is a big deal!


From National Family Voices: Please Share Your Experience and Advocacy Stories with the Genetic Alliance

July 26, 2011

This week, Genetic Alliance, in partnership with Family Voices and The Arc launched an online questionnaire  that allows experienced family advocates to share their advocacy journey, including how they developed certain skills and created the opportunities to influence systems. We will turn those experiences into stories that will inspire and encourage others to take action to improve lives and enrich communities. By collecting these stories into a publication and identifying the common themes, readers, who will be family members or individuals recently diagnosed with a genetic condition, chronic disease, disability and/or special health need, will begin to understand how to influence their own path in advocacy.

 

This online questionnaire will close on Friday, August 19.Parents (biological, adoptive, or foster), siblings, grandparents, other relatives, caregivers, and those with a health condition or disability are all welcome to participate. More details about the questionnaire can be found on the survey landing page: http://bit.ly/qii6iK 

 

There is such a wealth of knowledge by families that needs to be shared and we certainly hope that you will take a few minutes out of your busy day to either complete the survey or assist and encourage others to do the same. Advocacy has always been about getting the information needed and then turning it around so others can benefit too. Parents are tremendous experts and each parent that has ever struggled to access systems of care or education understands why providing information to someone else grabbling with the same issue is invaluable.

 

We hope you will consider participating so other families may benefit from your story!


Delaware Reaches Settlement With DOJ, Restructures Mental Health Services

July 18, 2011
“On July 5, Delaware officials reached a settlement with the U.S. Department of Justice (DOJ), outlining mandatory reforms in the provision of mental health services at the Delaware Psychiatric Center. Settling a 3-year DOJ investigation that found Delaware in violation of the Americans With Disabilities Act and the U.S. Supreme Court’s 1999 Olmstead v. L.C. decision, the agreement will reduce the number of patients at the facility from 160 to 125. The agreement also requires the state to provide individuals with community-based mental health services where possible, as well as support services, including a peer support recovery network and housing assistance. By January 2012, the state must also establish a mental health crisis team, capable of statewide crisis response within 1 hour. State officials estimate implementation of the agreement will cost approximately $4 million in the first year.”