My name is Kyron and I am the mother of a 14 year old developmentally disabled child, Katherine. Katherine had a stroke before she was born and has had multiple issues since. Since 2001 Katherine has been hospitalized in acute care psychiatric facilities 7 times in order to maintain her safety and the safety of our family and to try and stabilize her medications. There have been all types of diagnoses that she has been given. It doesn’t really matter – the consistent consensus is that whatever is going on with her is specific to the brain injury she suffered at birth and therefore the medications will help to some degree but it is unlikely they will ever completely “cure” her.

 

We have sought out all types of behavioral interventions, therapies, etc. in an effort to get her the help she needs. We want Katherine to have as productive and fulfilling a life as possible. We have sought out private therapists, consulted psychiatrists, developmental pediatricians, behavioral specialists, neurologists and on and on in an effort to find a way to maintain her within the community. We sought treatment in an out of state facility since no Georgia psychiatric facility would take her with the dual diagnosis of Mental Retardation and Mental Illness.  Finally we were told we would have to seek out residential care for her.  When confronted with the reality that there was no other option available but to place her in a residential facility, I put aside my anguish in the hopes that I was doing what was best for Katherine and it would give her the best hope long term. In the interim the behaviors only grew more difficult.  The residential facility suggested I call the GAO and also call the Regional MHDDAD office to let them know that Katherine’s situation was changing and that we were in desperate need of services or she would require institutionalization. We were apparently one of the lucky ones. People at Columbus Community and the GAO were helpful and got us emergency supports. Without that assistance we would have been completely on our own in an unsafe situation. Thankfully, Katherine was already on the short term waiting list for an MR waiver spot and  some allocations were becoming available in only a couple of weeks.

 

When we were told that Katherine had qualified for a waiver spot we were of course elated. It was our hope that we would FINALLY be able to get some help to make Katherine (and our) life better. Imagine our surprise when we were notified after this that not only was the Medicaid Katherine had the “wrong” kind of Medicaid, but that it would not qualify her for waiver services and that the emergency support we had would be pulled at the end of August, then only a few days away. How is it that only now was someone figuring out that the Medicaid my daughter had didn’t entitle her to waiver services? How is it that having determined that she was most in need could the response be “oh well, moving on”?  While no one at Region actually said those words, their inaction and failure or refusal to provide any information that would allow us to understand or fix what was making Katherine’s Medicaid was “wrong” spoke for them. The only explanation they would give, either to me or to individuals advocating for Katherine was a code number which theoretically proved her ineligibility. The meaning of that code was not given to us, nor could we find any explanation of it by doing Google searches.

 

Why is it that the staff that is supposed to check eligibility can’t actually fully check it? Why does this mysterious code not show for people charged with qualifying a child for waiver services? Why could her previous case manager at DFCS not see this mysterious code from HER access to the system? This basic step would save time and issues for Katherine and all children (not to mention man-hours which equals money that could be redirected to consumers) What had to be done to get this child the services she is so desperately in need of? This sounds like it should be simple but it is anything but.

 

Since the staff at DHR are supposed to be helping people it would seem to me that the communication and information sharing would be streamlined. It is anything but streamlined. It barely exists. Despite several calls no one could find out a) what the code meant or b) anyone who could actually see it in their information screen. After several calls what they were able to find out was that I actually had to go back to DFCS and “reapply” for “waiver Medicaid” which I did.  Even though I have done this I still have no idea what this code means or why it is blocking my daughter from receiving vital services. Why is there no interagency cooperation? Why when all of these individual departments of the larger agency (DHR) are supposed to be working for the best interest of their “consumers” are they either unwilling or unable to work together to expedite a crisis case? Why does a child who has been determined to be most in need get put on hold and have needed services pulled from them because someone can’t expedite a review in status of Medicaid? Why can’t someone at least look at the situation and see what is possible? Why when a child’s situation is so critical and unstable is the prevailing attitude within the agency “sorry, but procedure is procedure, and it is not my job to find out what is wrong or to find out what is the cause of the problem and work to find a solution.” When we went to the Medicaid office we were basically told just this and that they had up to a month to process this crisis case through. How could this POSSIBLY be??

 

So that you don’t think I don’t have a greater understanding, please know years ago in New Jersey I worked for the Department of Human Resources there. I understand that there is ALWAYS a story, a crisis and that generically if you responded to each crisis, day to day would never occur and you would be log-jammed for decades. What I’m suggesting is NOT a response to each crisis from the outside but an interdepartmental cooperation that would be unseen by the everyday consumer. It would be the ability for an employee from DD or MH to call DFCS and say “Hey, I have a consumer here who has Medicaid but it’s classified this way. What do we have to do and how can we expedite it so that they can access these services? Is it even a possibility? What can I provide you that in terms of information that might make this a decision you can make?” Honestly, the perception from this mother’s perspective is that no one cared enough to try aside from Katherine’s advocates. This appears to be a systemic case of a terrible combination of indifference, apathy and inability to work within the existing system.

 

Despite advocacy by myself and others on Katherine’s behalf, at this time Katherine’s emergency services have been cut off for one week now and we are no closer to having an answer to any of this or an answer to whether or not the waiver spot will be maintained in the interim.  We are trying to work through these issues that currently stand in the way of her getting the care she needs. As of this writing it has been over six  weeks since the initial notification of Medicaid issues with no discernible resolution or explanation of where we are in this crisis. How long any of this process will take is anyone’s guess and meanwhile Katherine and our family struggle to keep our heads above water, if that’s even possible.

 

There is a very real possibility that without these emergency services, and without this waiver we won’t have a choice but to revisit residential or institutional solutions. It would break my heart, but I’m not sure what else to do to maintain everyone’s safety and maybe get her the help she needs.

 

While I hope that the absolute minimum that comes from my letter is that no other family goes through what we have, my obvious hope is that this situation is resolved in Katherine’s best interests and that there is some way to help us avoid what seems to be the probability of having to place our daughter into some type of residential or institutional setting instead of maintaining her in the more desirable home setting.

 

Very Truly Yours,

Kyron

McDonough, GA