Advocacy

As parents, we know our child best. Please know that your 'gut' instinct is often right. It's important to partner with your medical professionals to address any concerns you may have. Medical professionals want to do a good job but it's important for us to remember that they don't always have all of the answers since they are just one piece of the 'puzzle' for understanding complex feeding issues.

As frustrating as it may be not to have all of the answers right away, try to work with them to figure it out. However, it is important to feel as if your physician is listening to you and is open to working with other medical professionals to help you and your child understand how to manage difficult issues. If you do not believe you are receiving the support you need, it is okay to seek a second opinion until you have a good fit.

Just remember, typically when a child doesn't eat it isn't because they are being defiant or 'behavioral' - they are actually trying to tell us something doesn't 'feel' right. It may be pain, a sensory issue, a fear of eating based on a bad experience, etc. The important thing to note is that whatever the underlying cause, it is very 'real' to them. It is their way of telling us something is wrong and it's our job to help them figure it out and we need to feel supported along the way.

In order to help parents and caregivers be better advocates for children with potential feeding issues and to earlier identify areas of concern, P.O.P.S.I.C.L.E. Center® has partnered with internationally recognized feeding experts to create the Early Identification Infant and Child Feeding Questionnaire. Our questionnaire will provide families with an opportunity to articulate their concerns based on the questions and answers within the tool. In turn, physicians and medical professionals will have more history because the tool provides a printable summary highlighting the particular issues of most concern. The parent and their medical professionals can discuss the results and partner together to formulate an appropriate and supportive plan to maximize potential better outcomes for the child and family as a whole.

To access the P.O.P.S.I.C.L.E. Center Early Identification Infant and Child Feeding Questionnaire© Click here

A Focus on Public Awareness

It's unimaginable that there are infants and young children who have difficulty eating, or that a child will actually starve themselves to avoid the pain they experience while trying to eat. P.O.P.S.I.C.L.E. Center's® goal is to provide as much data and information to families and medical professionals as possible, and we aren't just talking about picky eaters. There are many underlying medical, physical and emotional conditions affecting children who struggle to eat. In creating public awareness, the following are key topics to consider:

• Early identification is the key to prevention and an important first step in appropriate assessment and intervention
• Every child and family deserves integrated, coordinated care facilitated by their primary care physician
• There are many effective approaches to care and treatment, and no single approach meets the needs of all children and families

Insurance Coverage

Currently, insurance coverage varies greatly from provider to provider. It is critical that insurance companies provide a variety of comprehensive treatment options. When seeking treatment, families are faced with many challenges such as:

• Insurance companies provide only a limited number of sessions per year
• Critical specialists such as nutritionists and psychologists are not covered
• Team treatment is not covered
• Insurance companies often don't cover intensive pediatric feeding programs because they are considered experimental, investigational or unproven

Eligibility for State Funded Early Intervention Services

Every state offers a variety of early intervention services for children. If your child is struggling in a variety of areas they may qualify for early intervention in their state. Currently in many states, having a pediatric feeding issue does not qualify you for early intervention services. These services are critical for a variety of reasons:

• Feeding is often a symptom of a greater underlying medical diagnosis and it's important to pursue what is going on that is impacting a child's ability to eat
• Eating effects all aspects of a child's development
• Development of feeding skills are acquired in the first two years of life, therefore, earlier intervention is critical

Meeting these milestones is necessary for future growth and development. P.O.P.S.I.C.L.E. is collaborating with a team of internationally-recognized feeding experts to develop a summary of the prevalence of feeding issues and how this is impacting our children and their futures. It is our desire that this information can be used to approach insurance companies, legislators, and researchers to affect change for these children. We anticipate this information being available by late 2012. Please continue to check back with us on progress.

In the meantime, please click on examples of letters you can leverage to pursue receiving support for your child.