Desperate for advice

[katoolus]

I don't really know where to begin so I guess I'll just try and give the "cliff notes" version of my family and our needs.  

My daughter Becca just turned 6 on August 1.  She was diagnosed with Autism at age 3 and is completely non-verbal.  We aren't fully sure where she is on the spectrum as communication is very difficult.  We live in Colorado where the state has only 75 slots in their Medicare Autism Waiver so we were put on the waiting list for Becca shortly after her diagnosis.  She finally got into the Autism waiver program but unfortunately she was already 5 and the program ages everyone out at age 6.  In the meantime we have her on another wait list for a different program and we were lucky enough to get her into a transitional program where she qualifies for medicare in the interim but that's about it.  When we got on the waiver we were given a variety of different services including home healthcare to be done by a CNA which I am one so I was paid to do several care plans for Becca during the day which was such a huge help to our family.  We just received word that medicare is denying all payment to the Home Healthcare agency saying that Becca doesn't qualify medically for care.  This is devastating because now that she is on medicare full-time we were counting on this service and income for the family.  

Now here's more info, Becca is starting to have increasingly violent outbursts that last longer in duration than ever that are sooooo hard.  She bites herself, anyone within her reach, hits, pokes, pinches and for a 6 year old has incredible strength, willpower, determination and can do serious damage.  She is getting very destructive with property and I'm worried that if this behavior continues that she will be kicked out of the respite daycare we put her in periodically and I'm worried about the upcoming school year.  We took her to her pediatrician yesterday who referred us down to Children's Hospital to a developmental pediatrician (which is where we took Becca originally for her diagnosis).  That appt won't be for several weeks.  So here's where I need help, advice and recommendations.

Obviously the doctor will diagnose her as she or he sees fit, but I'm wondering if there is a diagnosis (secondary to autism which hasn't helped us much in the way of receiving services) that would benefit Becca better that we could sort of bring up the doctor.  However I'm worried that if it is considered a "mental illness" such as Manic depression or something on that note that it won't be any help to us for services.  

Physically Becca is pretty healthy although she does have ezcema.  The problem is that she needs constant supervision and needs assistance with everything from feeding, dressing, bathing, etc (all the activities of daily living).  Is there anyone in similar circumstances who has found a loop hole to get the services they need or has any advice for me?  Becca is so hard to handle and I'm pretty much the only person who takes care of her throughout the day and then I have help from my husband in the evening.  I can't keep this up much longer especially under the financial strain we are under.  Losing that CNA paycheck but still doing all the work was an enormous blow to our family.

[beachcomber]

Welcome to the SN forum. I'm sorry to see you're struggling to find appropriate services for Becca. I live in Canada so don't have much to offer in the way of practical advice. I just wanted to welcome you aboard.

[Linda on the move]

hello and welcome to the forum.

What is her school situation? In most places, the primary services for school aged kids are available through school.

(more from me later, I gotta run)

[KimPM]

The eczema indicates that she may have food allergies or sensitivities that are contributing to the behavior issues. My son's behavior deteriorates when he eats any of the 13 foods he's sensitive to. He also has a specific tree pollen he's sensitive to, and during that pollen season the behavior also deteriorates.

[Emmeline II]

We just received word that medicare is denying all payment to the Home Healthcare agency saying that Becca doesn't qualify medically for care.

Do you know what the medical qualifications are (the actual law/regulation) and how she does not qualify? Does the Home Healthcare agency have any experience/advice on appeals? Sometimes it comes down to how the processor interprets qualifications.

I would file an appeal and document who/what/when/where/how you sent the appeal and the most specific/restrictive confirmation of receipt the post office offers. I'm not familiar with the medicare bureaucracy to be more helpful but perhaps if you post on TAO you might find someone that either works in the bureaucracy or is more familiar with it from a patient point of view who doesn't happen to post here.

I would also ask the hospital to call if there is a cancellation for an earlier appointment.