15 March 2012

email to Joint Caucus Leader Marilyn Avila

Republican Representative Marilyn Avila, from Raleigh, NC, has served 3 terms in the NC House of Representatives representing District 40 of Wake County. Currently, she serves as the Joint Caucus Leader for the House and is Co-Chairman on the Appropriations Subcommittee on Health and Human Services (Standing). She filed for re-election on February 17, 2012.

March 15, 2012
Sent via email:

To: Joint Caucus Leader, Representative Marilyn Avila [Marilyn.Avila@ncleg.net] with re-forwarded 02/25 email to Members of the NC House and attached letter and enclosures to Governor Perdue following the 03/13 Joint Legislative Oversight Committee Meeting on Health and Human Services:


Dear Joint Caucus Leader Representative Avila,

I wanted to follow up and thank you for taking the time to speak with me briefly Tuesday and allow me to introduce myself at the Joint Legislative Oversight Committee meeting on Health and Human Services. Though I am not among your direct voting constituents, I continue to reach out as a concerned North Carolina citizen, disability advocate, and mother of a beautiful, innocent daughter with profound special needs who, along with her family members, will be directly and critically affected by the implementation of NC House Bill 916 (now SL 2011-264) if allowed to proceed as intended.

I realize the enormity of the issues at hand regarding the State's exhausted budget and I understand that there are no easy answers for the predicament we as a State have placed ourselves. It is truly frightening on many levels... Realistically, I understand that this train cannot be turned around this late in its travels; it has, after all, been moving in this direction for quite a few years. Though I sincerely believe the destination can be changed.

I am just a mother and advocate; I am only an expert in the life of my child and my role as her mother and protector, and as such am also at a loss for perfect solutions, however, I know very well what the answers are not, because I live it every day. Of all the citizens of North Carolina, special populations are the least responsible for the State's economic crisis; it is truly heart-wrenching that they, as the most innocent and fragile among us, will once again pay the price for the ill-intent and misdeeds of those who should have protected their needs and interests.

Beyond my personal trials, I feel it's worth consideration that the impact of this new waiver's full implication upon our already strained economy is a topic that should be addressed... The reality of job loss for existing case managers as well as the many small provider agencies which will likely not be able to sustain themselves without the reimbursement rates for case management services. And of course, the effects of these changes upon the CAP workers we families depend upon for survival who already make next to nothing for the invaluable duties they perform, assuming we've found a good one... which I'm afraid goes back to personal trials.

From your website, key issues, and bio, It’s clear you are a woman of honorable priorities and values. You stand firm in your beliefs that every citizen deserves the opportunity to prosper, receive a quality education, have their family values protected, and that hard-working law-abiding citizens and their families should not be forced to sacrifice opportunities nor the fruits of their labors to those with no legal right to partake. I can appreciate your position on each of these issues and commend you on your plight.

As a taxpayer and the wife of a small business owner, I can certainly support your desire to protect our rights to provide for our family without struggle. I can appreciate wholeheartedly your agenda that all parents have the means to provide the best possible education for our children in hopes that they will one day become productive, compassionate leaders who shall make the world a better place for generations to come...

Though, how do I explain to my endearing typically-developing five year old that he has choices and rights when his sister does not? How do I teach my young son respect for life and honor of family when the State of North Carolina is sending the message that she is not as valuable and is therefore less deserving? How do I tell him that we, as a family, cannot have the same opportunities as other families because we are limited by the supports we receive for his sister but that it’s not her fault?

And what do I say when he inevitably asks, “Why?”

Perhaps this wasn't the intention, but ultimately this was the message delivered in June of 2011.

Please find attached, my letter and enclosures to Governor Beverly Eaves Perdue sharing our story and explaining, in more detail, the concerns shared by many families across our state regarding NC's new Medicaid Waiver plan. I appreciate your taking the time to read my words as I have put forth considerable time and effort into providing an intimate portrayal of the needs and challenges for our family - a situation not so dissimilar to many many other North Carolinians. I sincerely hope that you will contact me at any time should you have any questions and if I can in any way be of assistance in this matter.

I respectfully request a written response relaying your position and intentions regarding North Carolina's Medicaid Waiver plans for families across the State under House Bill 916. I would like to be kept abreast of any developments, actions, investigations, decisions, changes, and the like, relating to North Carolina's restructuring of the 1915(b)(c) Waivers under HB 916, services and supports, and the implementation of those services and supports. I also would very much like the opportunity to time to meet with you in person; if you could please have someone from your office contact me to set up a time that is convenient to you, I would be most grateful.

Thank you in advance for your time and attention on this vital issue detrimental to so many – the most vulnerable of North Carolina’s citizens and the families who love them.


Sincere regards,
--
Crystal J. De la Cruz - Hopper
Mother, Disability Advocate, & Concerned NC Citizen
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