I am a father of a 14 year old boy who has been on this waiver practically his whole life.  He is ventilator-dependant, deaf/blind, has a g-tube for feeding, an ostomy bag for his intestinal waste, spinal cord rods from his neck to his tailbone, is essentially immobile and has to wear braces on his hands and legs to prevent twisting and deformity of those bony structures.  He also has a wonderful personality and is an incredible blessing to us and many who know him.  I hope that most parents in similar situations throughout Virginia would be able to express that same sentiment.

Unfortunately, the reality of being a parent and caretaker of such a child comes with numerous sacrifices and challenges unknown to those outside that special world.  The Tech Waiver has been a significant benefit to those in our situation as it has enabled us to keep our son at home by financially covering the significant costs related to home care.  For this, all who benefit are obviously extremely grateful.  However, while the current framework of the waiver is, at its core, a great thing, there is an issue that needs to be rectified.

Different children require different levels of care.  For those children who are deemed significantly affected by DMAS, they are qualified to receive 16 hours of nursing care per day for a total of 112 hours per week.  This is wonderful except for the fact that nurses miss shifts for various reasons.  When this occurs, parents either miss work during the day or end up missing sleep at night.  To remedy the hours of missed work and rest, there is an accommodation to allow for the making up of missed nursing shifts based on the total hours the child has already qualified for as entrance into this Waiver benefit.  The current DMAS format for this allowance states that nursing shift hours can be made up within 72 hours, or now even a week.  However, a parameter is in place which provides for this allowance only if the total nursing hours used do not exceed 16 hours in a 24 hour period.  This begs the obvious question -  what if you have a significantly impacted child who receives 16 hours a day of nursing coverage as a matter of course already?  When is it possible to make up the missed nursing hours?

This is the crux of the issue.  Why is it that the children and family caretakers who are most impacted medically are not able to make up the hours for which they have already qualified?  My wife and I have tried to root out an exact answer for this question, pursuing conversations and contacting people supposedly informed and in positions of influence within DMAS.  Yet, we still have not heard why this "rule" is in place.  In fact, it has appeared to be something that, not only is unworthy of discussion, but also is not going to be considered for possible examination.  We had been told once by an employee of DMAS that this restriction was a federal law.  Even after some brief research, we found that was not the case.  So, if this is 16 hour a day maximum is not a law, then what is it?  We are not asking for any more financial coverage from our state, only the flexibility to use our allotted hours as it fits our family needs...on a weekly basis instead of a daily one.

Why would this issue not be something that could be easily remedied?  What is this parameter's function as it relates to this issue?  There has been a suggestion that some parents might "stockpile" their hours if this stipulation was not in place.  If parents have 112 hours to use in a week, I am not sure how stockpiling for a few days would benefit them over the course of a week.  However, it might allow them to catch up on sleep or work on certain days, it might allow them to have more nursing coverage on days where they work long shifts (e.g., fireman, nurse, doctor, military personnel, etc...) and less on days they are off.  

Yet, let's say a particular family does not manage themselves appropriately under the framework of a more flexible allowance of hour usage.  Is the answer to restrict the entire system in order to control a few who need greater supervision?  Ask any class full of children who have to miss recess because of the misbehavior of just two classmates, and they will tell you that is unfair.  If DMAS indeed had a dilemma of any kind with a relative minority percentage of this population, isn't it their job to manage, supervise and intervene via the case managers who work directly with the families?  If someone shows themselves to be incapable of following the rules in place, then they indeed might need greater restriction from the governing body of DMAS.  But, to disallow flexibility and real, meaningful assistance to the large percentage of families who are working so hard and giving so much for their children, it is simply not right.

Finally, this government body of DMAS operates under the power of the taxpayers in this state.  As a recipient of this help from our fellow citizens, I am humbled.  This whole experience has only been tarnished by the surprising difficulty found as we have pursued an answer to this question of weekly usage of alloted hours versus a daily one.  When these types of issues seemingly have no stated origin, it tends to appear that like most other things in life, it must revolve around money.  Yet, we are not asking for any more, simply what is deemed appropriate for us according to the state's own measure.

The irony is that, as far as using those hours to make up missed nursing shifts, a family who receives 16 hours of nursing care a day would almost never be able to make up the total lost hours of even one, not to mention more than one missed shift in a week.  Mainly, just finding nurses able to fill more hours is a major issue.  Secondly, as a family there are only certain times when you may be able to catch up on sleep, work, errands, other life stuff...  Having these times match with one's pool of nurses who may be available for that case is often a challenge to say the least.  Yet, having the freedom to try and manage our lives the best we can with what we have is all that is being asked.

Please take the steps necessary to best serve the population to which you have been put in a position to oversee.  Allow the flexibility of nursing hour usage for families receiving 16 hour a day nursing coverage to be alloted and manipulated on a weekly basis without the restriction of a 16 hour a day cap.

Thank you...