Monday, March 2, 2015

Self Funded Employers and Autism Insurance

I had considered myself fortunate when it came to health care for our son.  For  12 years we never had an issue and never had to fight for services.  We were always covered. Until.... my husband's employment changed, along with the health coverage,..and of course they are self-funded and not mandated to have autism coverage. How is that fair?

I have been getting yet another "forced" education in something I really never had an interest in.

IF your employer has a "self-funded insurance plans" or "cafeteria plan" they are NOT subject to the state laws and mandates.  They get to pick and choose the coverage they want.  Now this MAY change.  Somewhere in the near future ALL plans will be mandated.  When is the "near future though?"...

Shocked me to hear that some companies even still believe that Autism isn't a medical disorder and that behavior therapies should be the responsibility of the parents and the school!!

The current employer for has over 200k employees,  with the statistics in Autism it's hard to believe  that there isn't one other person affected by it in this company?

I have tried calling Human Resources (HR) Department to see if not having the Autism Insurance Benefit is an it was an oversight? It wasn't.... and asked if  they would be willing to make and "exception" for us put a rider on our policy.... They won't.

Here is some other information I have found online to help convince your company to think about adding this to their coverage...We didn't have luck. Hope you will...

Autism speaks has this great Self Funded employer tool kit to download featuring a presentation and sample letters.

Of course I have been working with our school as much as I can for access to a BCBA there are only so many hours they will allow but I will take anything.

 I have applied for state insurance (ours is masshealth) as a secondary and "only" with a $800 premium a month (on top of the primary insurance we have now)they will cover autism services.  ha!

Because of this problem with self funded companies, many children (as mine has) suffer greatly.

I  would love to hear of any experiences out there, anything from frustrations to success story's  and advice... comment below of email me at

Friday, February 13, 2015

Poem: To All Mothers

I found this note tucked away in a book I had back in 2010.  No idea where I printed it from but it is signed on bottom from "Patricia" the grandma to "Trisha".  I thought I'd share because this is so beautifully written....hope you enjoy it as much as I do...

To all the mothers... 

Here's for all the mothers feel a vast emptiness when they touch the tummy, cause the baby should still be growing there. Instead they are fighting for life, miles away in a NICU. 

The mothers who hear the noise outside in the hallway, and know it's feeding time and babies are going to mothers, but not hers. 

To the mothers who know why the nurses eyes don't meet hers when they come into the room. 

To the mother who clutches the Polaroid picture, and tries to remember exactly how her child looked, as she briefly caught a glance, of a tiny body beneath tubes and wires, being wheeled out in a Plexiglas box, to the waiting ambulance. 

For all those 'difficult' mothers, who just are not appeased, until they fully understand the child's next test, diagnosis, treatment or surgery. 

To the mothers who make a 'milk run' driving 150 miles in the rain, at 2 am, because the hospital has called and told her the baby is going on formula, cause they are running out of breast milk. 

For the mother who have the hospital number in speed dial. 

To all the mothers who go home to an empty nursery, and nursery stays empty for months. 

For the mothers who wait for the special day when they can finally place the child into their very own crib. 

For the mothers who cry that very night, out of relief, and fear at the awesome responsibility that such a fragile child brings. 

To those mothers planning a nursery, who adapt their dreams, and don't see all those tubes, and wires, but see those cute little pooh bears, and their own precious child asleep in the crib. Who don't notice when others recoil at the shock of all the technology involved. 

To all the mothers who adapt a changing table into an equipment table. 

To all those mothers bodies have adjusted to endless nights of false alarms, but easily awaken to check it out anyway. 

For all the mothers who can't take a shower because an alarm might go off, and they couldn't hear it with water running from a shower. 

To the mothers who settle in for a bubble bath, only to jump out seconds later, to check the child, cause something just didn't sound 'right.' Dripping wet find either the fear was unjustified, or they need to grab a robe, and call 911. 

For all the mothers who can tell the paramedics the fastest route to the ER isn't the way they are planning on going, and convince them she is right before they pull out of the drive. 

For all the working mothers (is there any other kind)? Who spend their days with endless chores & responsibilities, but awaken in the night, routinely, without the use of an alarm clock, because it's time for a medication, or treatment. 

To those mothers who know where the hospital showers are located, how to sleep in a lounge chair, and how to reapply a monitor lead and then notify the nurse that the lead came off, but she replaced it. 

To those mothers who have no important initials behind their name, but will challenge those who do to THINK, and care. 

To all the mothers who refer to PICU as her 'winter home.' 

The mothers who rock their babies to sleep, and the ones who long too. But are told by a nurse "you can't over stimulate the child right now." 

To the mothers who live one day at a time. 

To the mothers who can tell their own mother they can't come into PICU while the doctor is there "cause you talk over me." 

For all the mothers who listen as grandma says she is sorry, she didn't realize it, and promises to not speak but instead will write her concerns down, for the mother to talk to the doctor about later. 

To the mothers who allow grandma to stay, after all. 

To the mothers who never mention it again. Because she knows it is out of love, not disrespect. 

Grandma will listen, her promise will not be broken. 

by Patricia...Grandma to Trisha Tracheomalacia, tracheoesophageal fistula, BPD, hydrocephalus, and seizure disorder. BiPAP via trach dependent, G-tube/ fundo