Join Us! October Parent Respite Co-Op Meet & Greets

October 6, 2014

Delaware Family Voices is hosting two special Parent Respite Co-Op opportunities this October.

What is the Parent Respite Co-Op?

The parent-run Respite Co-Op is a free child care exchange for parents of children with special health care needs in New Castle County.

Respite Co-Ops

Join us at one, or both, of our October meetings to learn more about this Respite Co-Op opportunity and the unique way you can receive respite care.

October Respite Co-Op Meeting Details

The Parent Respite Care Exchange Co-op is hosting two October Meet and Greet events. Don’t miss this opportunity for a night of networking with other parents, meeting the children, refreshments, and fun.

1. When: Monday, October 13 from 6:30 – 8:00 p.m.

Where: Easter Seals Blg – Large Conference Room, 61 Corporate Circle, New Castle DE 19720

2. When: Saturday, October 18 from 4:00 – 6:00 p.m.

Where: Ebenezer United Methodist Church, 525 Polly Drummond Rd.,  Newark, DE 19711

RSVP required to Peggy Prygon at 302-669-3032, or via email at peggy@defv.org.

Link to event flyer, Parent Respite Co-Op Meet & Greets.

Hope To See You There!

Join us this October for the opportunity to connect with other families with similar needs, and a chance for the kids with hang out with other kids.

See you soon!

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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.

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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.


Family SHADE – Helping Families With Special Healthcare Needs

February 8, 2013

Family SHADE

Did you know that one in five households with children include a child with special health care needs?

Who is the “Child With Special Health Care Needs?”

A child with special health care needs is one who has or is at an increased risk of chronic physical, developmental, behavioral or emotional conditions. This child might require additional health and other related services above and beyond what would typically be required by children of an equivalent age.

So who is the child with special health care needs? She’s the one with a chronic illness, disability or behavior health issues. He’s the one with severe asthma, autism, ADHD, cebebral palsy, cystic fibrosis, diabetes, Down syndrome, sensory impairment, sickle cell anemia, spina bifida. A child with special health care needs comes from all walks of life, across all demographics and income levels, all ethnicities.

Are you the parent or guardian of a child with special health care needs, or know someone who is? Are you in search of assistance, a way to connect with others, a way to find resources to better the lives of these children?

Family SHADE can help!

Family SHADE’s primary objective is to enable, empower and enrich families of children with disabilities and chronic health conditions.

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What is Family SHADE?

Family SHADE is the Support and Healthcare Alliance Delaware – an alliance of organizations, agencies and families whose purpose is to work together to better the lives of children with special health care needs. Family SHADE provides families with the information they need to manage their child’s special health care needs, helping these families navigate through the multitude and sometimes confusing resources that can assist their children.

Effective family support requires a multi-faceted, family centered approach to caring for these children. Family SHADE members are committed to ensuring that parents, siblings, and extending families have the resources, information, and social and emotional support they need to care for their children.

Delaware Family Voices is a proud member of Family SHADE!

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What Services Can Family SHADE Provide?

Through the Family SHADE website, you can do all the following:

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Through a phone call to Family SHADE, you can speak directly with parents who understand what you might be going through. You can receive information and referrals to the resources you need to better manage your child’s special health care needs.

Who Are The Family SHADE Members?

The Family SHADE members represent a broad range of organizations and individuals, all of whom strive towards a common goal – to work together to advance the purposes of Family SHADE, and to improve the lives of children with special healthcare needs.

Family SHADE members come from all walks of life, and typically have a connection to these children through one of the following categories:

Organizations and Agencies – that serve children with special health care needs in Delaware

Family Members and Guardians – of children with special health care needs, or self -advocates, living and receiving services in Delaware

Emerging Adults – who have special health care needs, living and receiving services in Delaware.

Family SHADE members are people like you. People who’ve “been there.” People who want to make a difference in the lives of children with special healthcare needs. For a complete list of organizations that work under the Family SHADE alliance, click on this link.

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Families Know Best

Not sure if a membership in the Family SHADE alliance is for you, but you still want to help? Consider becoming a member of the Families Know Best parent advisory council and help Family SHADE better serve children through monthly, confidential surveys.

Contacting Family SHADE

Interested in learning more about Family SHADE? Perhaps become a member of the Family SHADE Alliance or Families Know Best? Call 1-855-755-SHADE (7432) and speak directly with a Family SHADE member.

You can also contact Delaware Family Voices at 302-221-5362 and we can help you find the information you need.

Now’s a great time to check out Family SHADE’s newly launched website!

Family SHADE – Enable. Empower. Enrich.

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


Announcing the 2013 Managed Care and Mental Health Care Call-In Schedule

January 3, 2013

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The January through June schedule for the Delaware Family Voices Managed Care and Mental Health conference calls is now available. The calls will continue to be held on the second Tuesday of each month and will be from 11:00am to 1:00pm, EST. Specific dates and topics of discussion are as follows:

January 8 – Mental Health

February 12 – Managed Care

March 12 – Mental Health

April 9 – Managed Care

May 14 – Mental Health

June 11 – Managed Care

Other call details have not changed, and are detailed below.

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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.

Delaware Family Voices hosts monthly conference calls to provide families and professionals the opportunity to work together and 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 these calls to personally address any questions and concerns.

There are two different call types:

Mental Health – To address questions and issues families might have related to children’s mental health and behavioral needs. If you have questions about the child mental health system, obstacles to finding care, or need guidance in navigating these services, join us for the opportunity to speak with others on children’s mental health issues.

Medicaid and Managed Care – To address questions and issues families might have with Medicaid and the managed care system. These parent-run calls provide you the opportunity to ask questions, air grievances or simply listen and learn more about the Medicaid and managed care organizations.

How to Participate in a Call:

Please note that all call-ins start promptly at 11:00am EST and will typically run until 1:00pm.

Anyone may join a call by following these dial-in instructions. The call-in procedure is the same for each call:

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

At this time, you will be connected into the call.

If you have questions or concerns about your child’s Medicaid, managed care coverage, or mental health issues and would like it addressed during a call-in, please email your concerns prior to the call-in date. This provides us with the opportunity to be better prepared in addressing your questions or concerns.

For additional information on future call-ins, instructions on how to participate, and to be added to our call reminder list, please contact Ann Phillips at annp@defv.org.

Check out the Managed Care / Mental Health Call In Flyer for additional information.

Have questions now?

You don’t need to wait until a call-in to ask for assistance. Families are encouraged to call Delaware Family Voices at any time with medical or mental health questions or concerns. Please call 302-221-5360 and we will provide you with immediate assistance.

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Enjoying The Holiday Family Gathering With Your Special Needs Child

December 19, 2012

Holidays can be stressful for anyone, let alone for a child with special needs and his family.

Attending holiday family gatherings can be especially stressful for these children and their families. What should be a time filled with wonder and merriment, can quickly fade to disappointment, perhaps even meltdowns and the need to leave early.

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Tips to a Less Stressful Holiday Gathering

We at Delaware Family Voices understand, and would like to share with you our tips to help you have a less stressful, more fun-filled, holiday family gathering.

Prepare your child in advance

Help reduce potential anxiety by explaining why you are going to the gathering, as well as review expectations while there. Show him photos, tell him social stories, outline the plan of where and with whom you will be. Think about other ways to minimize surprises that might set your child off. Providing details in advance that can calm your child might just be the ticket for a calm, enjoyable gathering.

Prepare the relatives before you arrive

Call in advance of your arrival. Explain your child’s unique differences, including why certain actions may cause her stress. Discuss how to best communicate with your child, as well as what to do if your child appears distressed and you are not immediately available. For example, if your child cannot tolerate scented candles, ask if they may not be lit while your child is present. If your child does not like to be hugged or kissed, ask relatives to wave.

Discuss your child’s differences with the other children

Consider explaining your child’s differences with the other children at the gathering, especially those who may not know him. Be prepared with simple, age appropriate explanations of your child’s disability, abilities, and interests. Also provide ideas that would encourage other children to include your child in their play when appropriate.

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Review where the gathering will be held

Make sure your child will be physically comfortable while at the gathering. If your child requires a wheelchair, review how your child will get around during the gathering and if there are any modifications that can be made. Will the dinner table accommodate her wheelchair? Are there any particular hazards that could easily be removed for the duration of your visit? If needed, discuss any concerns with the hosts prior to your arrival. This will help avoid an unpleasant situation during the gathering.

Avoid food meltdowns

Review the menu with the hosts – then bring alternative choices if your child won’t eat what is being served. Alert the hosts if there are any food issues. Help them to understand why your child might be eating a sandwich or only rolls and mashed potatoes instead of enjoying that tremendous spread they spent hours preparing.

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Don’t fight the fashion fau-pax

If your child has clothing issues or sensitivities, don’t force him to wear that fancy outfit if it means a potential crisis. If a collared shirt is going to cause friction, let it go. If buttons will become a fidgety issue, forgo shirts with them. Letting her dress in comfort might help everyone enjoy the event longer.

If a formal family photo is planned, perhaps bring that button-down shirt or collared dress to be worn only for the few moments it will take to snap the photos. Just be sure to prepare your child before it’s time to put on that special outfit, letting him know that it can removed as soon as the photographer is finished.

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Establish a graceful exit plan before you arrive

Go to the gathering with high spirits, but have a contingency plan for if things get out of hand. An exit plan can be as simple as a phone call or text from a trusted friend or family member. Perhaps a special “call and rescue me” text from you to trigger that person to call, allowing you to graciously bow out of the gathering. If the gathering isn’t too far away, consider taking two cars, allowing some members to remain behind.

Your escape might only need to be a few moments away, after which you and your child can return to the party.  If your child is calmed by yoga or breathing exercises, or other exercise, take him to a quiet room or outside for a break. Consider taking a walk outside if you see your child needs time to unwind.

Bring your own activity supplies kit

If your child finds solace in an iPad or other electronic device, bring it, even if the gathering is considered a “device-free” event. If possible, include a new app or a new game to stimulate your child’s interest for a longer period of time. If loud noises might be an issue, bring noise-cancelling headphones, perhaps playing your child’s favorite calming music. Other kids might prefer coloring or drawing in a quiet room.

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Volunteer to watch the kids

Keeping an eye on the kids might allow you to intercept a potential meltdown before it happens. Keeping on top of possible triggers and redirecting potential situations that could set off your child can prevent an outburst as well as provide for a great opportunity for all the kids to interact in a fun and enjoyable way.

Another alternative is to have a trusted teenager or young adult who knows your child well, to keep an eye on your child and her interaction with the other children.

Stay calm in the face of negativity

It can be hard to remain cool when someone seems to be criticizing your child or questioning your parenting skills. In such situations, it is even more important to stay calm, as oftentimes your child will pick up on your stress. If needed, graciously walk away, take a walk outside, find somebody else to talk with. Just do your best to remove yourself, and your child if involved, from the negativity. Don’t let the situation damper your holiday fun.

Limit your child’s time at the gathering

Determine in advance how long you believe your child will remain comfortable in the social setting. Then, make your plans around this schedule. Also consider informing the hosts prior to your arrival that you might only be able to attend for a limited time. This can help prevent hard feelings if the hosts note your early departure.

Most of all, trust yourself!

You know your child best. If something doesn’t “feel right” then follow your parental instincts. If you need to leave early to prevent a melt-down, then do so, even if others are attempting to convince you otherwise. In the end, do what’s best for you and your family.

Congratulations!

When you get home, take a few minutes to rest and congratulate both yourself and your child on his accomplishment. Consider rewarding your child for her good behavior. Then sit back and enjoy the rest of the holiday!

A heartfelt Thank You goes a long way

Don’t forget to send the hosts a thank you note. This will go far in showing the hosts your appreciation in how they helped accommodate your child as well as help smooth the way for future gatherings.

Do you have any tips you’d like to share with us? Something you have found especially helpful? Please share in the Comments section below.

Happy Holidays to One and All!

From our house to yours, we wish you a very merry, happy, and stress-free holiday season!

Ann     Carrie     Kerry     Peggy     Carol

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Additional resources for handling holiday stress:


Meet Peggy Prygon and The Statewide Family Healthcare Initiative

December 13, 2012

Delaware Family Voices was recently awarded the Statewide Family Healthcare grant. The purpose of this grant is to address the needs of children and families with mental health needs, and to serve as a catalyst for positive system changes in children’s mental health care.

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Delaware Family Voices also recently hired Peggy Prygon. Peggy joins the DEFV staff with the primary objective of managing the Statewide Family Healthcare grant. As project coordinator, Peggy’s role is to advocate for families of children with healthcare needs, and to help them navigate the healthcare system.

2012DecPeggyImgPeggy is the mother of two children, one of whom has developmental disabilities. Formerly an elementary school teacher with special education experience, Peggy has also worked as a market research assistant and in library circulations.

Here are Peggy’s own words on joining Delaware Family Voices and taking on the Statewide Family Healthcare project:

“I am enthusiastic about my new position at Delaware Family Voices. I am excited to have the opportunity to implement the goals of our Statewide Family Healthcare grant. Our hope is that family driven care will be established, allowing families to share an equal role and partnership with physicians and clinicians in determining what is best for their children and what services will be provided.”

The Statewide Family Healthcare grant will also enable Delaware Family Voices, lead by Peggy, to develop the Delaware chapter of the Federation of Families for Children’s Mental Health.

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The Federation’s mission is to ensure that:

  • Families have access to effective and competent care for children with special mental health care needs, and
  • Family driven care is upheld, giving families, parents and caregivers of children with mental health needs a full partnership in the decision making of their children’s care.

Most importantly, the Statewide Family Healthcare Initiative grant will help Delaware Family Voices foster positive system changes for families and children affected by mental health challenges.

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We are excited to have Peggy join Delaware Family Voices. Her presence will enable us to expand our mental health programs and further assist Delaware families. Please join us in welcoming Peggy.

If you have any questions about the Statewide Family Healthcare grant or the Federation of Families program, please contact Peggy at peggy@defv.org or (302) 221-5363.


Managed Care and Mental Health Conference Calls

October 3, 2012

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.

Delaware Family Voices hosts monthly conference calls to provide families and professionals the opportunity to work together and 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 these calls to personally address any questions and concerns.

There are two different call types:

Mental Health – To address questions and issues families might have related to children’s mental health and behavioral needs. If you have questions about the child mental health system, obstacles to finding care, or need guidance in navigating these services, join us for the opportunity to speak with others on children’s mental health issues.

Medicaid and Managed Care – To address questions and issues families might have with Medicaid and the managed care system. These parent-run calls provide you the opportunity to ask questions, air grievances or simply listen and learn more about the Medicaid and managed care organizations.

How to Participate in a Call:

The call-in schedule for the remainder of 2012 is as follows. Please note that all call-ins start promptly at 11:00am EST and will typically run until 1:00pm.

October 9th – Medicaid and Managed Care

November 13 – Mental Health

December 11 – Medicaid and Managed Care

Anyone may join a call by following these dial-in instructions. The call-in procedure is the same for each call:

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

At this time, you will be connected into the call.

If you have questions or concerns about your child’s Medicaid or managed care coverage, and would like it addressed during a call-in, please email your concerns prior to the call-in date. This provides us with the opportunity to be better prepared in addressing your questions or concerns.

For additional information on future call-ins, instructions on how to participate, and to be added to our call reminder list, please contact Ann Phillips at annp@defv.org.

Check out this flyer for additional information.

Have questions now?

You don’t need to wait until a call-in to ask for assistance. Families are encouraged to call Delaware Family Voices at any time with medical or mental health questions or concerns. Please call 302-221-5360 and we will provide you with immediate assistance.