Next Parent To Parent Workshop Is Almost Here!

April 30, 2013

Are you the parent of a child with diabetes, a chronic respiratory condition, or a chronic cardiac condition? Would you like to help other families with similar chronic medical issues?

Consider training to become a Support Parent and be a part of a network of families supporting families. Learn how to effectively share your knowledge and experience to help support other families who are dealing with similar situations.

Help Others – Become A Support Parent!

Delaware Family Voices (DEFV) is the only organization in Delaware approved by Parent to Parent USA  to participate in the national Parent to Parent program. Through Parent to Parent Workshops, we provide the training and skills necessary to become a Support Parent.

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Once trained, Support Parents are then matched with families with similar circumstances. Support Parents help these families by providing them with emotional support and guidance as they navigate their child’s diagnosis. Learn more about the program through the following three resources: Introducing The Delaware Parent Partners ProgramHelp Us Help Parents Become A Parent Partner, and Parent to Parent USA.

Don’t Miss Our Next Parent to Parent Workshop!

Delaware Family Voices’s next Parent To Parent Workshop is just around the corner. Register now and learn more about the Parent To Parent program and how you can become a Support Parent.

When: Tuesday, May 7th
Time:  9am – 2pm
Where: Easter Seals Building- 61 Corporate Circle New Castle, DE 19720

A light lunch will be provided and child care reimbursement is available.

Kindly RSVP by May 3rd  to Ann Phillips at (302) 221-5360 or annp@defv.org. Class size is limited.

Please call Delaware Family Voices at (302) 221-5360 with any questions.

Hope to see you at the workshop.

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

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Image from Parent to Parent USA.

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Brain Injury Across The Lifespan – A BIAD Conference

February 28, 2013

Do you or someone you know, have a brain injury? Would you like to learn more about the latest brain injury information, connect with others experiencing similar situations? Consider attending the 22nd annual Brain Injury Association of Delaware (BIAD) conference, Brain Injury Across The Lifespan, April 4th and 5th, 2013, Wilmington DE.

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Doug Smith – Featured Keynote Speaker

Listen to keynote speaker, former NHL player Doug Smith, as he recounts his recovery from a broken neck and spinal cord injury. Learn how he fought back from quadriplegia to walk once again.

All registered attendees will receive a copy of his book, The Trauma Code. Doug will also be hosting the workshop, Internalizing Your Performance, during the conference breakout sessions.

2013 Brain Injury Conference Schedule

The conference will begin the evening of Thursday, April 4th, and will conclude Friday evening, April 5th, with the Diamond Dinner. The specific dates and times of events are:

– Thursday, 7:00pm to 8:00pm – Mix and Meet Reception

– Friday, 8:30am to 4:00pm – Brain Injury Conference

– Friday, 6:00pm to 9:00pm – The Diamond Dinner

NOTE Change of Conference Location: All activities will be held at the Doubletree Hotel, in downtown Wilmington. The exact address is 700 N. King St., Wilmington, DE.

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BIAD Conference Breakout Sessions

Choose from the following breakout sessions running through out the conference on Friday:

Child/Teen Track: Sessions on Interactive Metronome, Recreation after a Brain Injury, and Brain Injury and Child Abuse.

Mid-life Track: Sessions on Rational Psychopharmacology, Technological Recovery Tools, and Delaware Rehabilitation Services.

Elderly Track: Sessions on Vision, Concussion, and TBI.

Quality of Life Track: Sessions on Harnessing Your Passion after Brain Injury, Internalizing Your Performance, and Sibling Life.

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BIAD Conference Registration Details

There is a fee to attend the conference. If registering by March 31st, survivor, family member and student fees are $40 for BIAD members and $65 for non-members. The BIAD member professionals fee is $75, $100 for non-members. After March 31st, registration fees increase to $90 for survivors, family and students, $125 for professionals.

Need assistance with the registration fee? A limited number of scholarships are available for individuals with brain injuries and family members. Contact BIAD for details at 1-800-411-0505.

Need a hotel room? Reserve a room at the Doubletree Hotel by March 1st to receive the discounted conference rate of $109. Call the hotel directly at 302-655-0400.

Learn more about the conference and how to register in this flyer.

Conference Questions? Call BIAD at  1-800-411-0505.

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A Healthy Life Without Limits

Don’t forget to also attend the Healthy Life Without Limits health fair on Saturday, April 6th, for families and children with special health care needs. More details about this partner event can be found at A Healthy Life Without Limits.

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


Help Us Help Parents – Become A Parent Partner

February 21, 2013

Delaware Family Voices provides information to families of children with special health care needs. We are parents just like you who are raising our own children with special healthcare needs. Delaware Family Voices also supports our families and the professionals who serve our families by offering workshops and training sessions.

Parent Partners Delaware

Delaware Family Voices is currently working on a project to assess the unmet needs of families of children with chronic health conditions in Delaware. Our goal is to identify resources for these families, and to increase the number and availability of community organizations and systems to better serve these families. To fulfill our work under this grant, we have created the Parent Partners Program.

Who Are Parent Partners?

Parent Partners are the parents of a child or youth with one of the following medical conditions:

– Any type of diabetes

– A chronic respiratory condition

– A chronic cardiac condition

The child may have additional co-existing conditions, but we are initially focusing on these three conditions as representative of all chronic conditions.

Support groups for Kids with disabilities

What Does A Parent Partner Do?

A Parent Partner will have several responsibilities, including:

Complete the training program to become a Support Parent in the Parent To Parent program. More details about the program are found below and at the Parent To Parent USA website.

Distribute materials about the program to medical offices and other places where families of children with chronic medical conditions are likely to be.

Support the work of the Parent to Parent Coordinator by promoting the Parent to Parent program and training for Parent to Parent volunteers.

Help collect information from other families about the unmet needs of their children with chronic health conditions.

Help identify the availability of resources for families.

Provide recommendations to service providers, policy makers, and others on strategies to address these unmet needs.

Parent Partners who have full participation in the Parent To Parent program may receive a stipend of up to $250 plus travel expenses. Parent Partners who participate at a lower level may receive reimbursement for travel expenses.

Parent  To Parent Support Group

How Can You Help?

By becoming a Parent Partner! We would love to have you join us as a Parent Partner as we implement this important project.

Delaware Family Voices is in need of Parent Partners to represent all three Delaware counties. If you are interested, and would like to learn more about either the Parent Partner program or Parent To Parent, please contact Ann Phillips, Executive Director of Delaware Family Voices at (302) 221- 5360.

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What is The Parent To Parent Program?

Delaware Family Voices hosts the Delaware chapter of the Parent to Parent USA national program, which is dedicated to supporting families of children who have a special health care need, disability, or mental health issue. Through the use of one-to-one “matches,” the program brings together experienced Support Parents and parents of newly diagnosed children (Referred Parents). Support Parents provide support and guidance to the Referred Parents as they navigating their way through their child’s diagnosis and treatment plan.

Support Parents and Referred Parents are matched as closely as possible by the child’s diagnosis and other factors to ensure the best possible advise and help are provided to the Referred Parent. A Support Parent’s goal is to help a Referred Parent with adjusting to the new diagnosis and the family’s “new normal.” Support Parents provide a listening ear and emotional support as well as a means of locating relevant resources in a way that only a parent who “has been there” can provide. For additional information about the Parent To Parent program, please refer to the Parent To Parent website.

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

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Images from Parent To Parent USA.


Federation of Families Is Coming to Delaware

February 15, 2013

Do you know a child or adolescent who struggles with emotional, behavioral or mental health issues? Are you searching for assistance, and don’t know where to turn? Would you like to connect with families who are also coping with similar issues? Perhaps the National Federation of Families For Children’s Mental Health and Delaware Family Voices can help.

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Through a grant awarded to Delaware Family Voices, we will be working with the National Federation of Families For Children’s Mental Health to create a Delaware chapter of Federation of Families. Delaware Family Voices is currently searching for families to become involved with the Delaware chapter and help us establish this much needed resource in Delaware.

What is Federation of Families?

The National Federation of Families For Children’s Mental Health is a family-run organization with chapters throughout the United States, whose focus is on the issues of children and youth with emotional, behavioral, or mental health needs, and the families who care for these children.

Emotional, behavioral and mental health needs can affect families from every corner of society. These needs know no boundaries, affecting people at all income and educational levels, geographic locations, and racial, ethnic and religious groups. They affect single parent as well as two parent families, birth families to adoptive and foster families. Members of The Federation represent this very diverse group.

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What can the National Federation of Families Do For You?

At the national level, members of National Federation work to develop and implement policies, legislation, funding, and services for families affected by emotional, behavioral and mental health issues.  The organization emphasizes advocacy, giving families a voice in what they need to care for their children and youth mental health needs.

Specifically, the National Federation helps family by:

Providing advocacy at the national level for the rights of children and youth with mental health challenges.

Providing leadership and assistance to the nation-wide network of Federation of Families organizations, including the Delaware Family Voices chapter.

Working with other organizations to transform national policies on mental health care for children and youth with mental health challenges, and the families that care for them.

The organization’s website is also chock full of helpful resources for families and their children. Topics include:

Resources for Families – Find definitions, fact sheets, newsletters, and other helpful information about mental health issues. Learn more about connecting with others through webinars, conference calls, and the community forum.

Resources for Youth – It’s all about youth empowerment here! This section is specifically for youth and youth leaders to learn more about taking charge of their own mental health concerns.

Resources for Certified Parent Support Providers – Learn more about what it takes to become a certified parent support provider.

Browse the Publication Database for articles, fact sheets and other information across all topics related to children and families coping with mental health challenges.

By working with families who know all too well the toll mental health challenges can take on the whole family, the National Federation of Families hopes to improve the lives of everyone coping with these challenges.

How Can You Help?

Parents are the driving force behind a successful Federation of Families chapter, and to bring this program with all it’s wonderful resources to Delaware, we need parent partners. Delaware Family Voices will work with these parents to provide them with the tools and training they need to become effective parent partners with Federation of Families.

Training for parent partners will include organizational development, non-profit management, community development, business practices, financing of services, sustainability, leadership development, resiliency in children and families, and EPSDT mandate for children.

A parent partner can contribute at any level of support. There is something for everyone who wants to help create the Delaware chapter, from administrative to peer support, to note taking and sharing your story. Parent partners are the voice to empower other families and create system change.

Would you like to learn more about the Delaware chapter of National Federation of Families? Would you like to become a part of the effort to improve the lives of children with mental health issues? If so, please contact Peggy Prygon at 302-221-5363 or email her at peggy@defv.org.

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Click on this link to learn more about the National Federation of Families and it’s mission. Because children’s mental health matters.

Need assistance and don’t live in Delaware? You can either call Peggy and she can help get you to the resources you need, or you may contact the National Federation of Families directly via this Contact Form or 240-403-1901. You can also search the Find A Local Chapter page to locate possible resources in your area.

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


Apply Now For Delaware Junior Partners in Policymaking 2013 Program

January 23, 2013

Are you or someone you know between the ages of 15 and 22, with a developmental disability, or is an advocate for another person with a developmental disability? If so, then consider joining the 2013 Delaware Junior Partners in Policymaking summer program!

What is Junior Partners in Policymaking?

This exciting week-long summer program is designed to meet the changing needs of young adults with, and without disabilities, as they move towards independence. Participants in the program are a diverse group of young adults between the ages of 15 and 22, all sharing a common interest in the rights of people with disabilities.

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Throughout this week-long program, participants attend a wide variety of classes on a vast array of topics, including:

  • The importance of self-determination
  • How to advocate for yourself
  • Your rights in and out of school
  • Laws that affect the treatment of individuals with disabilities
  • How you can impact public policy
  • How to plan for the future that you want

The week concludes with a trip to Legislative Hall, where participants are given the opportunity to put into practice the wealth of information and skills they have learned throughout the week. Many state legislators will be available for participants to meet with and discuss issues important to them. This is a great time for participants to advocate for the rights of people with disabilities.

Participant who complete the program will be awarded a Certificate of Participation, great for resumes and college applications.

Junior Partners in Policymaking Program Details:

The Junior Partners in Policymaking was created by the Delaware Developmental Disabilities Council and is presented by the Center for Disabilities Studies at the University of Delaware. The week-long session will be held as follows:

When: Sunday June 16 to Friday, June 21st, 2013

Where: University of Delaware Newark campus

Participants will live on campus for the duration of the program. All classes are held on the University of Delaware campus, and the program ends with the trip to Legislative Hall, in Dover.

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Young adults interested in attending the program shall meet the following criteria:

  • Be between the ages of 15 and 22
  • Want to know more about disability advocacy
  • Live in Delaware now and at the time of the program

The Application Process:

Prospective participants need to complete the 2013 Junior Partners in Policymaking Application form and mail it to:

The Center for Disabilities Studies
Attention: Jr. Partners
461 Wyoming Road
Newark DE 19716

All applications must have an actual signature on the application form. Electronic submissions cannot be accepted.

If you have any questions about the program or the application process, please call Grace Wesley at 302-722-7066 or email her at jrpartners@udel.edu.

NOTE: Applications must be submitted by February 14th.

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Does the Junior Partners in Policymaking sound like something you or someone you know would like to participate in? Download the following information for additional details and dates for upcoming informational meetings.

2013 Junior Partners in Policymaking Course Description

2013 Junior Partners in Policymaking Brochure

2013 Junior Partners in Policymaking Informational Meetings

Don’t forget – applications are due February 14th!

Have you, or someone you know, participated in previous Junior Partners in Policymaking programs? Share your experiences with us!

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All images from The Center for Disabilities. University of Delaware.


An Apple Event for Kids With Autism

November 11, 2012

Do you or someone you know have a child or adolescent on the autism spectrum? Would you like to explore how an Apple touch screen device might benefit someone with autism?

Do you already own an Apple iPad or iPod? Would you like to learn more about applications that could help a child or adolescent with autism?

Are you confused by the number of Apple products and apps that can assist someone with autism? Would you like to talk directly with an expert who can help guide you to what might best fit you and your child’s needs?

Are you a teacher or therapist working with children on the autism spectrum? Would you like to learn more about how Apple devices and apps could benefit your classroom or therapy sessions?

Is your child on the autism spectrum easily overwhelmed by crowds? Wouldn’t it be nice if you could bring your child into the Apple store when it was closed to the general public?

If you answered yes to any of these questions, perhaps we can help!

Join Delaware Family Voices, Autism Delaware and The Apple Store for a Special Event

Delaware Family Voices and Autism Delaware have partnered with the Apple Store in Christiana Mall to create a store event dedicated to children and youth on the Autism Spectrum.

During this special event:

  • The Apple Store will be open exclusively to children with autism and their parents.
  • The store will be closed to the general public for the duration of the event.
  • Only those who have pre-registered for the event will be in the store.
  • Trained Apple Experts will be on hand to answer questions and demonstrate products and apps.
  • You and your child will be able to explore Apple products in a safe and quiet environment, no crowds, minimal noise.

Learn how Apple touch screen devices and apps can benefit children on the autism spectrum, including meeting communication, sequencing, social skills and other autism spectrum needs.

Teachers and therapists are also invited to the event. Explore how Apple devices may be viable tools in the academic environment.

Event Details:

Where: The Apple Store, Christiana Mall, Delaware

When: Tuesday, November 20th

Time: 8:00am-9:30am,

Note: Pre-registration is required.

This is a sensory friendly event. Pre-registration is required and space is limited.  Please contact Delaware Family Voices at 302-221-5362 or familysupport@defv.org to register or to learn more about this event.

Come join us Tuesday, Nov. 20th. Learn how an Apple touch screen device can benefit a child or adolescent on the autism spectrum.

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Apple iPad images from Apple.com.


Introducing The Delaware Parent Partners Program

September 10, 2012

Delaware Family Voices (DEFV) is dedicated to helping families of children with chronic medical conditions. As an ongoing part of DEFV’s effort to support these families, through a grant awarded to the Department of Public Health, and in partnership with Family SHADE, DEFV has created the Parent Partners Program.

What is the Parent Partners Program?

The Parent Partners Program is designed to identify and access non-medical resources to further assist families with chronically ill children. Resources from emotional support to insurance assistance to recreational opportunities, and more, can make major improvements in the challenging lives of these families.

DEFV supports families of children with special health care needs to become informed, experienced, self-sufficient advocates for their children and themselves.

DEFV also stresses a family-centered approach to help families better cope with their children’s health condition. The Parent Partners Program is an extension of this approach. The program’s primary goals include:

  • Assist DEFV in assessing the unmet, non-medical needs of Delaware families of children with chronic health conditions.
  • Identify and access resources for these families.
  • Make valuable resources available to as many families as possible.

Through this program, DEFV and trained Parent Partners will work together to identify resources for these families as well as work within the local communities to develop specific organizations and systems to better serve the families.

Who are Parent Partners?

Parent Partners are parents of a child or youth with special health care needs (CYSHCN), and in particular, parents of children with any type of diabetes, a chronic respiratory condition or a chronic cardiac condition. The child may have additional co-existing conditions, but the initial focus will be with these three chronic conditions. They will serve as representative of the much larger, diverse group of CYSHCN.

What are the roles of a Parent Partner?

Parent Partners will:

  • Complete the Support Parents training in the Parent to Parent** training program offered by DEFV.
  • Complete a survey on the unmet non-medical needs of children with special health care needs.
  • Assist DEFV in the distribution of the survey to physicians and to other parents of CYSHCN.
  • Participate in at least one focus group discussion.
  • Assist DEFV in the collection of information from families on the unmet needs of CYSHCN and the availability of resources for these families.
  • Assist DEFV in developing recommendations to address these unmet needs in preparation for presenting to local service providers, policy makers and others.

Parent Partners may receive a stipend as well as travel expenses for their participation in the Parent Partner program.

Who can be a Parent Partner?

Do you live in Delaware and have a child with one of the following chronic medical conditions?

  • Diabetes, any type
  • Chronic respiratory conditions
  • Chronic cardiac conditions

If so, would you consider becoming a Parent Partner, and help DEFV support other Delaware families with children with chronic medical conditions?

If you, or someone you know, might be interested in becoming a Parent Partner, please contact Kerry Doyle-Shannon, the Parent to Parent Coordinator for Delaware Family Voices, at p2p@defv.org, or #302-221-5361.

**Additional details for the Parent to Parent Program: Parent to Parent is a national program that provides emotional and informational support to families of children who have special needs, most notably by matching parents seeking support with an experienced, trained “Support Parent.” DEFV is the Delaware branch of the national Parent to Parent program.

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Images from the Parent-To-Parent website.