Showing posts with label advocacy. Show all posts
Showing posts with label advocacy. Show all posts

01 December 2012

Arc NC Action Alert!


There are three important federal matters that require your immediate advocacy!
Don't Go Over the Fiscal Cliff!

What's the Issue? If the deficit negotiations are not complete by January 2nd, the country faces steep automatic budget cuts ("sequestration") on everything from Defense to IDEA and Head Start, Vocational Rehabilitation, Section 811 housing among others. It would hurt all Americans, including those with intellectual and developmental disabilities. Click here to learn more...


What can I do? Send a letter to Senators and Representative telling them that sequestration is not an option. It's easy, just click below, enter your zip code, and our system will automatically generate a message that's ready to send. We encourage  you to personalize the pre-generated message.

Click Here to Send a Message to Your Senators and Representative!

Ratify the Convention on the Rights of Persons with Disabilities!
What's the Issue? The United Nations Convention on the Rights of Persons with Disabilities (CRPD) empowers individuals with disabilities across the globe to be independent and productive citizens while treated with respect and dignity by outlining rights of citizens and responsibilities of their home countries.   Based largely on US law, the CRPD would not change our laws or cost any money.  Instead, ratifying the CRPD would give the U.S. the opportunity to provide technical assistance and guidance to over 125 countries in a meaningful way. Click here to learn more...
The Senate may take up the CRPD as early as TODAY.  Senators Burr and Hagan need to hear from you now.
What Can I do? Sen Hagan has said she supports ratifying the CRPD, but Sen. Burr's position is unknown. Send a letter to Sen. Burr urging him to vote in favor of ratification of the CRPD. It's easy, just click below, enter your zip code, and our system will automatically generate a message that's ready to send. We encourage  you to personalize the pre-generated message.

Stop H.R. 2032!
 What's the Issue? H.R. 2032 is a bill that would place restrictions on the ability of state Protection and Advocacy Agencies (such as Disability Rights NC) to bring class action lawsuits on behalf of individuals with disabilities in intermediate care facilities, effictively creating a seperate type of 'justice' for people with I/DD. This bill is opposed by The Arc, Disability Rights, The American Bar Association, and many more. It's primary supporter outside of Congress is a group called Voice of the Retarded. Click here to learn more...
What  Can I do? Contact Rep. Howard Coble (R-NC), a co-sponsor of the bill, and let him know that this bill is NOT in the best interest of people with intellectual and developmental disabilities. It's easy, just click below, enter your zip code, and our system will automatically generate a message that's ready to send. We encourage  you to personalize the pre-generated message.

14 August 2012

FAN Stewards of Children Workshop 9/8

Stewards of Children Workshop

Where: Freedom House, 102 New Stateside Dr., Chapel Hill, NC 27514

When: Saturday September 8, 2012 from 9:00 AM to 12:00 PM EDT


Dear Friend of FAN:

Recent headline news about the trial of Penn State coach Jerry Sandusky who sexually victimized children entrusted to his care has caused parents across the country to question the safety of their kids when in the care of others. And they should be concerned. Statistics reveal that 1 in 4 girls and 1 in 6 boys are sexually abused before their 18th birthday.

Children with special needs have a higher rate of victimization than non-disordered children.

In an effort to help parents and other interested members of the community learn more about child sexual abuse, the Family Advocacy Network (FAN), a program of Mental Health America of the Triangle, proudly presents a training from Darkness to Light, "Stewards of Children: Confronting Child-Sexual Abuse With Courage." The training will be facilitated by Amy Martin-Jewett, RN, Saturday, September 8th, 9:00am to 12:00-noon at Freedom House Recovery Center, 102 New Stateside Dr., Chapel Hill.

Child safety is every adult's responsibility. In this workshop, participants will learn:

  • how to prevent abuse
  • how to recognize warning signs
  • how to react responsibly when it occurs

This workshop is offered free of charge. Donations are gratefully accepted. Training materials and refreshments will be provided. Stewards of Children is an initiative of the Chapel Hill-Carrboro YMCA, partnering with FAN and other area organizations in an effort to maximize opportunities for trainings throughout the community.

Registration is limited to 25 participants. Registration will discontinue when maximum registration is reached or on Thursday, September 6th, whichever comes first.



Please let me know if you have any questions about the workshop. I look forward to seeing you on September 8th.

Sincerely,

Georgia Gamcsik, Family Advocate
Family Advocacy Network (FAN)
a program of Mental Health America of the Triangle
georgia@mhatriangle.org
919-942-8083

26 July 2012

NC Fails at DOJ Settlement, but has a Plan!

22 Years Ago Today...

Thu, Jul 26, 2012 at 7:59 AM
From: Vicki Smith, Executive Director of Disability Rights North Carolina
Re: State fails to settle with DOJ but announces 8 year plan



FOR IMMEDIATE RELEASE


[ view the DRNC Press Release ]


DOJ Update
NC Secretary of Health and Human Services, Al Delia, will announce the details of an 8 year plan to develop services for 3,000 individuals with mental illness in living in Adult Care Homes to more integrated setting appropriate to their needs later today. 


The State and USDOJ have been in confidential negotiations for the last year. At the table were representatives from the Governor’s Office, Department of Health & Human Services, and the Attorney General’s Office. Little information was shared about discussions until today’s announcement that the parties have failed to reach agreement but the state is moving forward with a plan. However, the General Assembly’s inclusion of $10.3 million in the 2012 - 2013 Budget to begin implementation of any settlement was seen as a sign that resolution was near. The announcement will also include acknowledgment by the State that it was unable to reach a settlement agreement with USDOJ, largely because of disagreement regarding an enforcement mechanism.


Our Response

“We are disappointed that the State was unable to come to an agreement to resolve our complaint with USDOJ,” said Vicki Smith, Executive Director of Disability Rights NC. “It is reassuring to have the State acknowledge the enormity of the unmet needs of people with mental illness and their plan to increase supported housing, supported employment and other services. However, the plan outlined by the State lacks a binding agreement, one which once and for all commits the state to fulfill the promises we’ve heard today. “ 

The Department of Justice may still pursue legal action against the state. Whatever steps the USDOJ takes next, Disability Rights NC will continue to address this situation. 

North Carolina has failed to:

Develop a meaningful Community Integration Plan as required by the 1999 Supreme Court’s Olmstead Decision including policies that provide incentives for community based services and placements;

Adequately fund the state’s Mental Health Trust Fund;

Develop community based services as hospital beds were closed, instead it relied on an industry that was neither designed nor competent to promote the recovery and inclusion of people with mental illness in the community; and

Most importantly, the State failed to focus first and foremost on the interests and needs of people with mental illness. It lost sight of its purpose - protecting the health and safety of all its citizens while providing essential human services.

What a way to celebrate the 22 anniversary of the signing of the ADA into law.

Take a look at this short video:  http://youtu.be/6ieH8FE9Dhw

“Let the shameful wall of exclusion finally come tumbling down.”

More information as it develops!


Vicki Smith
Executive Director
Disability Rights NC
2626 Glenwood Avenue, Suite 550
Raleigh, NC 27608
Phone: 919-856-2195
TTY: 1-888-268-5535
Fax: 919-856-2244
vicki.smith@disabilityrightsnc.org


Disability Rights NC is the state's protection and advocacy system. 

Disability Rights NC is a 501 (c)(3) organization. Donations support our efforts to promote a clear and independent voice for North Carolinians with disabilities. If you are a state government employee, you can support Disability Rights NC through the State Employees Combined Campaign (SECC). Please use code # 1544.

This transmission is intended for the sole use of the individual or entity to whom it is addressed, and may contain information that is privileged, confidential and exempt from disclosure under applicable law. Any dissemination, distribution or duplication of this transmission by someone other than the intended addressee or its designated agent is prohibited. If your receipt of this transmission is in error, please notify us by telephone (919) 856-2195 or return e-mail to the sender. Please delete all copies of this message and any attachments.

13 July 2012

NAMI NC 2012 Annual Conference


The Next Step…Where Do We Go From Here?

October 19-20, 2012

Jane S. McKimmon Center – 1101 Gorman St., Raleigh NC

We are very excited about our agenda this year and hope that you will join us! Please share this opportunity with your co-workers, families, individuals living with a mental illness, youth, school personnel, etc. We hope to see you there! CEUs will be available again this year – don’t miss out, REGISTER NOW!

Keynote: Major General and Carol Graham. The Grahams have dedicated their lives to suicide prevention after losing their son Kevin, 21 to suicide and their son Jeffery, 24 in combat, all within the same year. The Grahams will speak about Suicide Prevention and the dangers of untreated depression (Read more).

Other guests include:
  • Clark Flatt from The Jason Foundation, will speak on Youth Suicide.
  • Dr. Sara Lisanby, Department Chair of Duke University’s Department of Psychiatry and Behavioral Sciences, will present New Advances in Brain Stimulation.
  • Bill and Bonnie Kinschner will share How to grow an affilaite and outreach efforts Using FaithNet materials.
  • NAMI IOOV Presenter and Author will share tips on how to live with Anxiety.
  • Beth Ann Russell will discuss the challenges of living in recovery with schizophrenia

Workshop topics include:
  • Public Policy Overview
  • Meeting the Media – how to stell your story
  • Presentation by The National Child Traumatic Stress Network
  • Managed Care Waiver
  • Retaining Employment
  • Military Mental Health
  • What to do if your child is arrested.
  • And much more!


* For more info, please see NAMI NC's website.

14 June 2012

Legislative Correspondence: A Blast From the Past...

Mary K. Short is a strong and active advocate and the parent caregiver of an adult DD recipient with profound needs. She fights tirelessly for the rights of her daughter, Katie and other special families, as well as a great deal of time keeping folks informed! See below legislative correspondence regarding some of the same issues regarding DMA's 8M Clinical Coverage Policy from 2007. Posted with Mary's permission.


Mary and her daughter live in NC House District 88 and Senate District 42. Her daughter is being served by Smoky Mountain LME.

From: MaryKShort@aol.com
To:  Representative Nelson Dollar <nelson.dollar@ncleg.net>,
House Speaker Thom Tillis <Thom.Tillis@ncleg.net>
BCC: MaryKShort@aol.com
Sent: 5/30/2012 9:14:34 P.M. Eastern Daylight Time
Subj: 2007 email that is still timely!

Dear Speaker Tillis and Rep. Dollar:

I was "cleaning" old mail on my computer. Look what I found. I hope you both can see the ridiculousness of the NC Innovations Waiver having the same 40 hour policy that I was writing to you about in 2007 and I hope you can put an end to this ridiculous policy once and for all.

Additionally, I have received copies of the Public Comments that were made to DMA's Clinical Policy 8M CAP-MR/DD last June/July/August. There are over 500 comments. I have told you both before that only 1091 parents are paid to provide Home Supports out of the 10,000+ on the CAP-MR/DD waiver. It is astounding that most of those comments are families BEGGING DMA to not eliminate Home Supports. Yet, that is precisely what DMA did. It looks like about 500 out of 1000 felt strongly enough to actually WRITE an email. I already gave Sen. Daniel's LA (Andy) the Word documents from a thumb drive I brought with me to Raleigh today. (I only received the documents yesterday.) I am in the process of looking into a web site where I can post the documents and where they can be read rather than downloaded onto a computer. (My families will appreciate that!) I will send an email to everyone after I have that done. I also have to read ALL of it ... I skimmed all the pages.

Mary K. Short
828-632-5888 or 704-451-4144 (cell)
___________

From: Representative Nelson Dollar <Nelsond@ncleg.net>
To: MaryKShort@aol.com
CC: Legislative Assistant for Representative Thom Tillis <Tillisla@ncleg.net>,
Malcolmg@ncleg.net
Sent: 5/4/2007 11:38:27 A.M. Eastern Daylight Time
Subj: RE: DHHS/DMA - DD (not MH/SAS)

Dear Ms. Short,

Thank you for your e-mail and for sharing your personal experience. We will need to research were this legislation stands in the two Chambers, and any language or special provisions regarding these funds that may be in the House budget proposal. I appreciate having your "draft" proposal as a guide to your thinking on this issue.

My office will get back with you this coming week with an update on where this issue is in the legislative process.

Thank you again for your correspondence and your kind words.

Best Regards,
Nelson Dollar

Rep. Nelson Dollar
N.C. House District 36
Legislative Building, Suite 1209
Raleigh, NC 27601
919.715.0795
___________

From: MaryKShort@aol.com [mailto:MaryKShort@aol.com]
Sent: Mon 4/30/2007 11:02 AM
To: Representative Nelson Dollar
Cc: Kristen Feneley (Rep. Tillis); Sen. Malcolm Graham
Subject: DHHS/DMA - DD (not MH/SAS)


Dear Mr. Dollar,

I am writing to you in order to ask for your help with legislation regarding the DD community. I am sending copies to my Mecklenburg representatives and am asking that you all work together to help. If it is at all possible that any of you disagree with what I am asking, would you please at least respond with your reasons why? Please.

Mr. Dollar, I have seen you a number of times on UNC-TV Legislative Week in Review and feel I have gotten an understanding of your interests in general and in DD (developmental disability) and mental health issues as well. I did see that you have sponsored specifically H 674 and therefore feel comfortable that you have an understanding of the DD community.

Mr. Tillis, you were kind enough to meet with me and my daughter in Cornelius for over an hour back in February to discuss my concerns with what was happening in the CAP-MR/DD waiver program. Mr. Graham, I regret to say that you and I have not spoken other than at an initial meet the candidates evening at Davidson's Town Hall years ago!

I am asking for help to stop the proposed Technical Amendment to 1915 (c) CAP-MR/DD Waiver dated 3/2/07 (http://www.ncdhhs.gov/mhddsas/ and then click on What's New to see "The New Technical Amendment No. 4 ..." which will take you to the CAP-MR/DD pages. Specifically, Services and Supports Provided by Legally Responsible Individuals, Relatives, and Legal Guardians, Appendix B-2, Attachment 1.

I was hoping you could look at my proposed "DRAFT" and determine if there was a way to amend a pending bill (such as Sen. Shaw's S 1188) to include some/all of the language in my "DRAFT" ... I am just a parent of an ADULT Medicaid beneficiary, a private citizen, and if Technical Amendment No. 4 is implemented, then I will have no choice but to go to the Clerk of Courts and resign my guardianship. A new guardian will then need to be appointed and that new guardian had better get busy, because my daughter will no longer be able to live in my home. I simply cannot watch her be abused by "staff" AGAIN and especially not IN MY HOME. The truly crazy thing about Technical Amendment No. 4 is that is does not SAVE one Medicaid penny and it does not prevent a stranger from working more than 217 hours! My daughter's plan of care is what is funded, not her family! The services are going to be paid for whether I receive the paycheck or some stranger (or combination of strangers) does. And I just refuse to teach her to have "appropriate" behavior while she is naked in front of constant rotating staff! And I refuse to interview and train staff for FREE. I volunteer all the hours that are NOT funded now ... my ADULT daughter requires 24 hour staff, 7 days a week, 365 days a week ... she simply is someone who forever and always will be in the care of others.

DRAFT

Whereas, the General Assembly of North Carolina acknowledges the federal Centers for Medicare and Medicaid Services definition used for State Plan Medicaid services can be found at State Plan Manual:

4480. PERSONAL CARE SERVICES

D. Definition of Family Member. -- Personal care services may not be furnished by a member of the beneficiary's family. Under the new final rule, family members are defined to be "legally responsible relatives." Thus, spouses of recipients and parent(s) of minor recipients (including stepparents who are legally responsible for minor children) are included in the definition of family member. This definition necessarily will vary based on the responsibilities imposed under State law or under custody or guardianship arrangements. Thus, a State could restrict the family members who may qualify as providers by extending the scope of legal responsibility to furnish medical support."


Whereas, the General Assembly of North Carolina acknowledges that the Centers for Medicare and Medicaid Services allows States to extend the scope of legal responsibility to furnish medical support,

Whereas the General Assembly of North Carolina acknowledges that the Centers for Medicare and Medicaid Services allows states to enact further specific State Plan and/or 1915(b)(c) Waiver definitions,

Now, therefore,

The General Assembly of North Carolina enacts:

Section 1 (I do not know, but is a number). Chapter (again, who knows, but it is a number) of the General Statutes to read:

The General Assembly adopts the federal Centers for Medicare and Medicaid Services definition of "family member" as written for Medicaid State Plan and 1915(b)(c) Waiver services and specifically does not extend the scope of legal responsibility to furnish medical support or authorize the Secretary of Health and Human Services to enact any rule or policy that would change the definition or extend the scope from the federal Centers for Medicare and Medicaid Services definition or scope.

SECTION 2. Nothing in this act shall require the General Assembly to appropriate funds to implement it or require a local management entity to spend additional funds to implement it. The provisions of this act are not intended to create a burden, financial or otherwise for the Department of Health and Human Services or local management entities.

SECTION 3. This act is effective when it becomes law.

Okay. That is my DRAFT. I am trying desperately to take away the current power of the Secretary of DHHS to take my daughter away from me simply because she is POOR and is DEPENDENT on Medicaid tax dollars. I have documented proof of the abuse she has suffered at the hands of others here in North Carolina ... please, please, respond.

Mary K. Short
P.O. Box 1994, Davidson, NC 28036
704-896-5735

12 June 2012

Sign Arc NC's Online Petition!



In 2011, the NC General Assembly passed House Bill 916 (now SL 2011-246). It mandates that North Carolina’s Mental Health, Developmental Disability, and Substance Abuse (MHDDSA) system of care convert to a Managed Care System by January of 2013. The shift happens in stages, with many areas of our state already affected. While The Arc has concerns about managed care for people with intellectual and developmental disabilities, we understand the state will convert to this system.

A major issue with the new design is the replacement of independent Case Management with Care Coordination provided by the Managed Care Organization (MCO). Though we understand that Case Management as it currently exists will not be available in Managed Care sites, we believe individuals should have someone not working for the MCO responsible for writing their person centered plan and to assist them in finding the appropriate service providers. Otherwise, a conflict of interest exists.

In addition to the need for independent care coordination,

In an effort to make NC’s system more responsive, The Arc is recommending a modest set of changes to members of the General Assembly. These changes would establish independent care coordinators not working for the MCO to assist in writing Person Centered Plans and to help find the appropriate services providers. Additionally, it would require that Innovations Medicaid Waiver Slots be portable, and that where a person first received Medicaid not become a barrier for services.

These changes will have no impact on the budget that the NC House and Senate are currently working on and will not cause cost increases in future years. MCOs may have to change the way they organize Care Coordination, but with careful planning that involves qualified agencies, families, and consumers, we believe the cost to MCOs will be minimal.

It is important to note that our proposal does not restore Case Management, but rather builds upon the option that is already available in the law- Care Coordination. Our proposal requires MCOs to contract these functions for people not on the Innovations Medicaid Waiver and assures that people on Innovations have the option for an Independent Care Coordinator.

Many members of the General Assembly want to help with this plan but they need to hear from their constituents.

Please sign our petition today!

07 June 2012

Legislative Correspondence to Re. Tim Moffitt

Thu, May 31, 2012 at 3:37 PM

From: Crystal J. De la Cruz
To: Representative Tim Moffitt 

Re: DMA 2011 Public Comment Documents on CAP I/DD



Thank you for allowing me the opportunity to say hello and quickly introduce myself today; you were most kind given the chaos and time constraints at the General Assembly today. I do look forward to sitting down for a more comprehensive discussion regarding the 1915(b)(c) Medicaid Waiver and the impact upon recipients and families, as well as the countless dedicated professionals, staff and small business owners whose livelihoods will be be affected - many who may be forced to leave a field that they love for self-preservation.

I am forwarding with this mail, an email sent to Representative Current yesterday with attachments to include the 2011 Public Comments to DMA regarding both phases of 8M Clinical Policy proposals for CAP I/DD services and supports. The first 8M proposal was posted for 46 days, while the second, with more drastic cuts was posted for only 15 days. I'm not certain by whom these were reviewed but certainly not by the appropriate persons in my humble opinion. They are quite lengthy documents, described in more detail in my mail to Dr. Current below, but given that as I meet with members I continually hear that they're not hearing from many parents, I do believe it is worth a scan. These are the missing voices. 

For everyone's convenience, I plan to try to break down the the comments and highlight the significant feedback, suggestions, testimonials and desperate pleas.

I have further included with this mail the detailed email and attachments sent to Governor Perdue and members of the General Assembly in February of this year. 

I understand this is a great deal of information; I've probably read shorter books. As I mentioned, there really is no way to put it in a nutshell. My goal, while we struggle to salvage the State's fiscal integrity, is to make certain no one forgets the human element in all this - the most vulnerable and least responsible of our citizens. The train may have left the station already, though I firmly believe there can be a better destination.

Thank you in advance for your time, attention and compassion toward our special populations and the families who love them.

If I can be of assistance in any way whatsoever, please do not hesitate to contact me at any time. 


Warm 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 




3 attachments
20110512-0626 NC-DHHS-DMA Public Comments 8M CAPIDD.doc [598K]
20110728-0811 NC-DHHS-DMA Public Comments 8M CAPIDD.doc [2786K]

Legislative Correspondence to Sen. Tommy Tucker

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


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]

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]

31 May 2012

What's New in May?

May 2012 events and updates.


What's New Main ]






    30 May 2012

    NC DHHS DMA CAP I/DD Public Comments Dox

    Where are the voices you ask?...

    Whenever the Department of Health and Human Services / Division of Medical Assistance proposes new policies and / or policy changes, they are required to post them online for so many days for public review and comment. Policy proposals on all Medicaid related topics can be found here. Spring of 2011, the two Clinical Coverage Policy proposals for CAP IDD 8M were posed for public review comment twice.

    ORIGINAL PROPOSED CLINICAL POLICIES for CAP-IDD:
    NOTE: The 15-day posted proposal drastically differs from the 45-day posted proposal, with a total of 14 pages deleted from the second proposal posted.
    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.

    On behalf of Isabel and all her special friends, Thank You! - each and every one of you for all that you do and sacrifie to give our children a Voice!

    It is our 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.

    PUBLIC COMMENTS on CAP-IDD CHANGES:

    Mary K. Short was kind enough to forward the compilation of comment documents along after finally receiving them from DMA. Thank you Mary.

    *Please note: Though public documents, I have done my best to remove personal contact information to include email and postal addresses for individuals. 
    In a message dated 5/29/2012 2:27:25 P.M. Eastern Daylight Time, brad.deen@dhhs.nc.gov writes:Dear Ms. Short,
    Again, I apologize for the email mixups. Attached are the public comments you requested. If we can assist further, please do not hesitate to call me.
    Brad DeenNC DHHS, Office of Public Affairs919-855-4840
    Email correspondence to and from this address is subject to the North Carolina Public Records Law and may be disclosed to third parties by an authorized State official. Unauthorized disclosure of juvenile, health, legally privileged, or otherwise confidential information, including confidential information relating to an ongoing State procurement effort, is prohibited by law. If you have received this e-mail in error, please notify the sender immediately and delete all records of this e-mail.
    -----Original Message-----From: "Skinner, Eric"
    To: "Bush, Melanie E"
    Subject: FW: Public comments Date: Wed, 9 May 2012 17:06:27 +0000
    Here is the first email.
    Eric Skinner Administration Services Officer Director's Office NC DHHS Division of Medical Assistance
    1985 Umstead Drive 2501 Mail Service Center Raleigh, NC 27699-2501 919-855-4108
    919-733-6608 (fax)

    From: Terrell, Sandra D
    Sent: Wednesday, May 09, 2012 12:28 PM To: Skinner, Eric Subject: FW: Public comments
    Eric:
    This was sent on April 10th but to Brad Deen who sent it to DMA clinical policy. There is another email with attachment to follow.

    From: Johnson, Susan
    Sent: Wednesday, May 09, 2012 12:12 PM To: Terrell, Sandra D Cc: Crosbie, Kelly Subject: FW: Public comments
    Sandy,

    There was so much info, I divided and sent in two emails. My next email will be the remainder. Please let me know if you have any questions. Thanks
    Susan E. Johnson Developmental Disabilities Manager Behavioral Health Section, Clinical Policy Division of Medical Assistance 919.855.4299 susan.e.johnson@dhhs.nc.gov
    From: Johnson, Susan
    Sent: Tuesday, April 10, 2012 12:12 PM To: Deen, Brad Cc: Crosbie, Kelly Subject: Public comments
    Brad,

    Attached you will find the first part of the public comments. I am sending the second in the next email.
    Susan E. Johnson Developmental Disabilities Manager Behavioral Health Section, Clinical Policy Division of Medical Assistance 919.855.4299 susan.e.johnson@dhhs.nc.gov
    Email correspondence to and from this address is subject to the North Carolina Public Records Law and may be disclosed to third parties by an authorized State official. Unauthorized disclosure of juvenile, health, legally privileged, or otherwise confidential information, including confidential information relating to an ongoing State procurement effort, is prohibited by law. If you have received this e-mail in error, please notify the sender immediately and delete all records of this e-mail.
    -----Original Message----- From: "Skinner, Eric"
    To: "Bush, Melanie E"
    Subject: FW: Public comments 2 Date: Wed, 9 May 2012 16:52:23 +0000
    Do you want me to forward this to Brad? You weren’t’ copied on this.
    Eric Skinner Administration Services Officer Director's Office NC DHHS Division of Medical Assistance
    1985 Umstead Drive 2501 Mail Service Center Raleigh, NC 27699-2501 919-855-4108
    919-733-6608 (fax)

    From: Terrell, Sandra D
    Sent: Wednesday, May 09, 2012 12:29 PM To: Skinner, Eric Subject: FW: Public comments

    The second set. Again, sent on April 10th to Brad Deen
    From: Johnson, Susan
    Sent: Wednesday, May 09, 2012 12:12 PM To: Terrell, Sandra D Cc: Crosbie, Kelly Subject: FW: Public comments

    Sandy, Here is the 2nd email sent.
    Susan E. Johnson Developmental Disabilities Manager Behavioral Health Section, Clinical Policy Division of Medical Assistance 919.855.4299 susan.e.johnson@dhhs.nc.gov
    From: Johnson, Susan
    Sent: Tuesday, April 10, 2012 12:14 PM To: Deen, Brad Cc: Crosbie, Kelly Subject: Public comments 2
    Brad,
    Here is the second set of comments. This set is from the 15 day posting. Please let me know if you have any questions. Thanks
    Susan E. Johnson Developmental Disabilities Manager Behavioral Health Section, Clinical Policy Division of Medical Assistance 919.855.4299 susan.e.johnson@dhhs.nc.gov