Connor living life to the fullest!
You Are Your Kid's Voice: A Parent's Guide to Advocating
by Rachel Nichols
by Rachel Nichols
I am my son's voice. I am his advocate. It's a tough job. The hours are long and the pay sucks. It involves hours of research, driving, phone calls, and appointments. I didn't get two college degrees to be a personal assistant to a one-year-old. However, it's the best job I've ever had. My boss and the rewards are amazing. I'm great at my job because I have to be; the consequences are too great if I'm not.
Focus: Advocacy and Awareness
by Traci Nagy
Before I had my son, Lucas, I didn't give feeding tubes much thought. I didn't know anyone on a feeding tube and I never thought of infants and children needing them. Like most people, all I knew about tube feeding was Terri Schiavo and the association of feeding tubes with the end of life. That was it.
by Jill Flinton
Having a child with medical complexity is difficult enough. Having a difficult insurance company does not help. But having insurance--of any type--is a must. So how do you get what you need without driving yourself crazy?
I have successfully argued $10 co-payments to $1,750 lab tests using the procedures discussed below. The key is knowing what services were provided, what was billed, and what you are responsible for. I have a three-ring binder with all the Explanation of Benefit (EOB) statements, prior approval letters, letters I have written, and receipts from providers.
I am a parent of two children with special needs. However, my advocacy has been through Breath of Hope, an awareness organization I helped found in honor of my child, Cecilia, who fought valiantly for 38 days and chose wings over feet.
As a parent, I have had to advocate for my children. My daughter, Cecilia, was born in 1999 and died after a 38 day fight for her life with congenital diaphragmatic hernia. I also have a son, Noah, who has been diagnosed with Asperger Syndrome. Fortunately, there are many resources and organizations for Autism Spectrum awareness. Through my work experience, I have been a plan administrator for health plans and understand probably more so than the average person how to move through the systems. I have given families information that has helped them advocate for their children and work the system to obtain the best possible care for their children. Eventually, I helped to form Breath of Hope, an advocacy and awareness organization for congenital diaphragmatic hernia.
Being in the hospital is stressful for everyone, and it can be incredibly stressful for the parent staying with the child in the hospital. Despite your own high level of stress--which I can attest sometimes approaches insanity--it is vital to focus on the needs of your child. You are the only person whose entire attention is directed toward your child, and you must advocate for your child to get what your child needs.
Hospitals are busy places that are commonly underfunded and understaffed. Your child's nurse may be taking care of as many as six patients at once, and the resident physician, nurse practitioner, or attending may be caring for as many as 15 or more patients. While ideally all of the people caring for your child while inpatient will be intimately familiar with her needs, diagnoses, medications, and problems, it is often difficult for this to happen. As a result, you need to advocate carefully and effectively for your child to ensure her needs are met while inpatient.
Specialty Article
Diaper and Incontinence Product Coverage Through Medicaid and Insurance
New Year's Resolutions: Let's Get Organized!
One of the largest daily expenses many families face is probably one most people would not think of: diapers. Unlike the average typically developing child, children with medical complexity or other special needs often require diapers and other incontinence products for their entire lives.
Diapers may cost families $120 a month or more, and wipes, disposable underpads (chux), and other incontinence products may add substantially to the cost. Most--but not all--children with private insurance do not receive coverage for diapers. All children enrolled in Medicaid programs in every state are entitled to diaper coverage. Unfortunately, many states have made it difficult for children to receive this benefit even though they are clearly entitled to it.
Feature Article
by Karen Scallan
No more drowning in piles of paper. It's time for New Year's resolutions and a great time to think about getting your child's health records organized. Have you ever misplaced an important number? Left the doctor's office and remembered something you wanted to tell the doctor AFTER you left? Did your child's IEP go missing right before a big meeting?
Organized records help you review the history of your child's care, appeal an insurance decision and provide a resource for answering the teachers' and doctors' questions. Most importantly, organized records are easier to access in case of an emergency.