Happy spring from Keva (3.5), Tavish (5) and Adrien (5)!
All three are diagnosed with chronic lung disease of prematurity and airway obstruction.
Give Me Some Damn Oxygen!
by Sarah Ince
When you are the mother of a child who is medically complex, you realize quickly that insurance companies are going to be causing you a lot of work, worry and stress. We had dealt with things with my son, who has a rare interstitial lung disease called NEHI, since he was about six months old.
In his nearly five years of life, we had to appeal decisions on a molding helmet for his misshapen head, RSV shots for him when he kept getting hospitalized with every cold he was coming down with and various billing issues. Although annoying because they took a while to get resolved, we were confident claims were going to get paid eventually due to the plan we were on. Getting his oxygen approved was another matter entirely.
Getting Paid to Care for Your Child
I’d like you to meet Kari, a fabulous nurse and the mother of a child
with multiple special needs. Kari needs to work part-time to help
financially support her family. During the hours she works, her
daughter requires nursing-level care due to GJ feeds, frequent seizures,
and other medical needs.
If Kari doesn’t work, her daughter
does not receive any nursing, and obviously Kari doesn’t receive any
pay. But if Kari does work, a nurse has to come to her home and take
care of her daughter while she is at work.
The irony is that Kari
is a pediatric home care nurse. She goes to another family’s home to
care for THEIR child while a nurse comes to her home to care for her
daughter. Yes, you read that right. Her state does not allow her to be
paid as a nurse for her own daughter, so she must leave her daughter at
home and go provide care for another child.
Medical Strollers for Kids Who Walk
by Brandi Gioia
One of the biggest issues facing parents of children with special needs
is getting insurance companies to cover necessary equipment that makes
our children’s lives a little bit easier. I have two children with
special needs, and while my insurance company has been very
accommodating in covering most of their needs, the most difficult item
to get covered was a special needs stroller. The reason it was so
difficult to get covered is that my boys can walk…most of the time, as
long as we are not walking far.
I have three boys, and my two
youngest have a diagnosis of mitochondrial myopathy. This causes them
to lack endurance required for longer outings, so we decided when my
middle son was about three to look into getting a stroller through
insurance.
Moses* lives in Pennsylvania and has a GJ tube, congenital heart disease, and some mild motor issues. He receives 84 hours per week of nursing care. Megan* lives in Illinois and has a GJ tube and severe cerebral palsy. She is not eligible for nursing care and receives only four hours of respite per week. How can children with such similar levels of need receive such different levels of service?
States are given lots of latitude in creating Medicaid waiver programs, respite programs, and other similar programs. They are able to designate their own criteria for admittance into each program, and there are no federal standards as to what levels of medical complexity, technology dependency, or medical fragility require nursing care and respite. As a result, the amount of nursing and/or respite a child receives varies dramatically based on his or her state of residence and insurance status.
In order to get a better understanding of what services children are or are not receiving, we undertook a brief survey of families who either receive nursing/respite or believe they should receive nursing/respite. Surveys were completed for 95 individual children. Questions were asked to determine how many hours of care each child received, what type of provider worked those hours, and how medically complex each child was.
by Tracy Reed
It was a cold and snowy January day much like any other. The phone rang, and I walked over to pick it up. I noticed on my caller ID it was the number from the children’s hospital we travel to, and so I picked it up. I was expecting it to be a normal reminder call, since we were close to the date to go see urology for our daughter Maggie.
Little did I know that this call was going to be much different than past phone calls. It was one of the nurses from the urology department letting us know that our visit had been denied, and that they could suggest another doctor in our area. I sat there almost speechless, fully expecting this to be an insurance issue. Then I cried.
Medical Food Coverage and Legislation
For many families, their greatest monthly expense is the cost of formula used for tube feeding or specialized oral feeding. Children with a wide range of digestive diseases, metabolic conditions, allergic or inflammatory disorders, swallowing problems, craniofacial abnormalities, and other diseases or conditions require these specialized formulas as their full or partial source of nutrition. Unfortunately, in many cases, insurance does not cover the cost of formula. For some children on the most specialized formulas, the cost may be as much as $1000-$2000 a month, just for formula.
In most cases, these children have no other options other than formula to meet their nutritional needs. But because formula is typically associated with healthy infants, and parents are typically expected to shoulder the costs of feeding their children, many insurers refuse to pay for formula, even when it is highly specialized and extremely expensive.
by Allison Swets
The apps vary in price range, focus or scope and usability. Which ones you choose will depend greatly on the user and your budget. Thankfully, the choices are many and growing all the time. And if you are so inclined you could create your own app! Parents just like us who have a child with communication difficulties create many of these apps.