Let me first start this posting the same way I started it last year……. As a mother whose son has been on the Technology Assisted Waiver for many years, I’m so thankful that this service is available to him.  However….

…. I continue to be frustrated by the restrictions still placed on the PDN offered to families – specifically those receiving 16 hrs/day.  Even more frustrating is the lack of explanation around what seems to be an arbitrary decision about the ability to make up missed shifts.  After contacting DMAS on numerous occasions, there has yet to be an explanation as to why the previously proposed changes to PDN cannot be made.  There has been no legal reason given.  If there’s no law preventing these proposed changes, then we’re left to use our imagination as to the real reason they were excluded.  As with many big decisions, one might assume it has to be financial in nature.  However, in this case, there does not appear to be any negative financial impact.  Allowing families to make up previously authorized PDN hours that are missed within a week’s time adds NO ADDITIONAL COST – even if the made up hours result in more than 16 hrs/day! 

I appreciate that the aggregate of PDN hours needs to be 16 hours within a 24-hour period in order to be below the financial threshold for the cost of institutionalization.  But basic math shows that, for example, if 8 of the 16 PDN hours from one day are missed (16-8=8) and those missed hours (8) are evenly applied across let’s say the next 2 days (16 reg hrs + 4 make-up hrs = 20 total hrs and 16 reg hrs + 4 make-up hrs = 20 total hrs)  the total for the 3 days (the first day with the missed shift – 8 hrs -  and the two with the make-up hours – each @ 20 hrs) in the end is THE SAME AS 16 hours per day.  (8+20+20=48 versus 16+16+16=48)  It seems as though DMAS is only taking into consideration when PDN hours go above 16 hrs/day and conveniently forget when missed shifts are subtracted from the 16 hrs/day.  Thus, in aggregate, this still equals 16 hrs/day.  And suggesting that respite hours can be used in this instance is unfair and not the intent of those hours. 

Since on the surface the making up of missed shifts doesn’t appear to have a negative financial impact, it again forces us to speculate as to why these changes were not made.  It makes one question if perhaps the budget for the waiver is based on the expectation that a certain number of shifts will be missed and not made up…….hmmmmm…….

Another frustration comes from the Town Hall Agency Background Document under the Public Comment section, where I believe several of the agency’s responses are inaccurate/incomplete.  For example:

1.  A physician commented ‘suggested that the PDN hours be regulated by the week instead of daily’.  The agency response was ‘this change has been incorporated’.  Nowhere in the updated regulations does it appear that families can now use their hours on a weekly basis instead of a daily basis.
2. ‘One of the individuals expressed concern that the agency’s regulations were developed without input from families who have children served by this waiver.’  The agency response was ‘DMAS worked with affected providers and a representative group to formulate the proposed stage regulations’.  I appreciate that DMAS included ‘affected providers’, but what about the affected recipients on the waiver?  Families were most obviously left out of this ‘representative group’ that was comprised of the following:  1 rep from Maxim Health Care, 2 reps from The Pediatric Connection, 1 rep from Virginia Association for Home Care and Hospice, 1 rep from Pediatric Services of America, 1 rep from Interim Health Care and 1 rep from Carillion Home Care.  In addition, 4 reps from DMAS were included.  Yet another way DMAS has shown that input from the families on this waiver are not taken into consideration or valued.

DMAS has questioned why more families on the waiver haven’t commented on these changes.  I would suggest that it’s because you never notified them that these changes were coming.  We receive regular correspondence from DMAS about a variety of authorizations and we have regular appointments with our DMAS nursing supervisor…..how difficult would it have been to use one of those avenues to inform families of these changes?  As someone who has been anxiously awaiting the review of these regulations (10 years!) and been proactive in tracking down the status, I still found the process challenging and at times difficult to navigate.  (even after soliciting the support of our local Delegate to assist in the process)  Most families who are on this waiver are already overwhelmed by their daily responsibilities and the thought of tackling another large initiative is just too much to consider.  Services provided by DMAS are meant to support the families in need, not create additional obstacles.

Finally, I’d like to point out that while many of the comments posted are not from primary caregivers, they are from people who have seen firsthand how missed shifts and the inability to use PDN hours in a flexible manner have an impact on the lives of the families on this waiver.  They are the co-workers who cover for us when we have to miss work due to a canceled shift during business hours, they are the family members who offer to make us dinner because we’re too exhausted at the end of the day after being up all night from a missed shift, they are the supervisor at work who helps you create a flexible work schedule when the day nurse has to end her shift 2 hours early unexpectedly, they are the neighbors who drive your other child to softball practice because you don’t have nursing coverage in the evenings – they are our support where the waiver has left an unnecessary void.

I will again offer to meet directly with anyone in DMAS who is willing to have an open discussion about the struggles families face and collaborate on how best to address these concerns.

Sincerely,

Beth Gillum
Primary Caregiver