Wed, May 30, 2012 at 4:48 PM
From: Crystal J. De la Cruz
To: Tommy.Tucker@ncleg.net
Re: DMA 2011 Public Comment Documents on CAP I/DD
Dear Senator Tucker
My sincere apologies for the delay in following up after our May 15th visit. I'm sure you can appreciate the sentiment when I say I've been "running around like a chicken with my head cut off."
I greatly appreciate your time and attention in meeting with [name stricken] and I regarding Medicaid Waiver concerns for the DD populations, their families and the wonderful providers who have kept us all afloat throughout this rocky journey. I recognize that this is not an easy time for NC and I do not envy your job as a Senator, so it means a great deal that you are open to having a dialogue. I sincerely believe that you want to see this baby put to bed and sleeping safely and soundly, so to speak, and I do admire your unwillingness to compromise your character... and that is why I sought to meet with you.
No, it's not an easy life raising a child with profound special needs - in fact, unimaginable to most, but I can tell you one thing with the utmost certainty: at the end of the day, it's our special folks who keep it real and truly put life in perspective. That is why I do what I do because I am the mother Isabel needs me to be. I firmly believe special people were not born to be tested, rather to serve as litmus to the rest of us.
And that's why I maintain that there's so much more to these issues than fiscal accountability; besides Merriam-Webster defines accountability as: "the quality or state of being accountable; especially : an obligation or willingness to accept responsibility or to account for one's actions" Who among us are least accountable, least responsible for this mess than our special populations?
Several members have expressed that they haven't heard from many parents. I keep pointing out that it is not an easy feat for many of these folks to pack up their kids with all their meds, supplies, sensory items, and equipment and travel hours away for a 30 minute - an hour meeting and well, most don't have the time nor vacation time because they use it all going to appointments with doctors and specialists. --Most of us do the very best we can with what we got and sometimes there's no extra left over. And sometimes when we do let the laundry or dishes go or forgo a shower to take the time to sit down and write a letter, send an email - pleading for help, it falls on deaf ears.
Families need a little more acknowledgment than a pat on the head. Some of us are quite knowledgable, some are professionals in the field, some of us have really great ideas and we've been navigating system after system after new-and-improved system - but we are each experts in what we know. We need and deserve the respect of being heard by our Governor, the General Assembly and the administrators of entities entrusted to assure order and means in the survival of those they serve.
I am polishing up additional materials for you that I hope to send later today regarding our prior visit and conversation, though meanwhile I wanted to share with you the attached documents forwarded to me by fellow parent Mary K. Short who finally received them yesterday from Brad Dean at the DHHS Office of Public Affairs. Attached are the Public Comment response records from 2011 regarding the 8M CAP I/DD Clinical Policy proposals posted from 5/12 thru 6/26 and from 7/28 thru 8/11 -- a total of 540 comments; 618 pages. Pretty interesting reading. And this is what's missing - the human element.
Comments were made from across North Carolina by many parents and caregivers sharing heartfelt details of their lives as well as professionals, providers, and advocates in the DD field who know well the devastating impact such changes and service cuts would have not only on the recipients and families they serve and care for, but on their small businesses, their livelihood and the lives of staff they employ as well.
My sincerest hope that our elected officials - our Governor and members of the North Carolina Senate and House of Representatives - aspiring candidates, policy-makers, Health and Human Services administrators, LME's, MCO's, and other stakeholders and powers that be take the time now to hear that voice as our lives are in your hands... not merely the quality of our lives but rather our ability to live.
I know I'm asking a lot of you to sit down and skim through a 'book' like this but I also believe you want to assure this thing is done right; currently it's not. There's far more at stake than our State's broken-back budget - A budget crisis which cannot be rectified by plugging the dike with our finger and hoping for the best. Hoping there's not another crack - if we cement this model as it, the levee will break.
Thank you again for your time and attention and thank you in in advance for your considerations and efforts toward improving our State and our lives.
Sincere regards,
--
Crystal J. De la Cruz - Hopper
Mother, Advocate & Concerned Citizen
When we allow the value of human life to be determined by capital gain, when we sacrifice the well-being of the most innocent among us to compensate our own shortcomings, and when we judge the worth of our most fragile, not by their character nor intention, but rather their abilities – We Are in Crisis.
http://no2nchb916.blogspot.com/
"The moral test of government is how it treats those who are in the dawn of life . . . the children; those who are in the twilight of life . . . the elderly; and those who are in the shadow of life . . . the sick . . . the needy . . . and the disabled."
--Hubert H. Humphrey
2 attachments
20110512-0626 NC-DHHS-DMA Public Comments 8M CAPIDD.doc [598K]
20110728-0811 NC-DHHS-DMA Public Comments 8M CAPIDD.doc [2786K]
