07 June 2012

Legislative Correspondence to Rep. Bill Current


Wed, May 30, 2012 at 3:51 PM
From: Crystal J. De la Cruz  


Dear Dr. Current,

My sincere apologies for the delay in following up after our May 15th visit. It was a great pleasure meeting you and getting to know a bit about you as a person; I'm so glad the time afforded us a chance to chit-chat. Both [name stricken] and I were moved by your deeply-rooted integrity and moral compass. I dare say the world could use more people like you Dr. Current and your family is very lucky to have you. 

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. 

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. 

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.

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. These 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.

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 with a book like this but I also know you understand the importance of the messages inside. Thank you again for your time and attention and thank you in in advance for your considerations.

Kind 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]