Parent PBH Inquiry

Pat Wiegand is the parent caregiver of two adult DD recipients, Casey and Jason, who depend upon CAP Waiver supports to keep her family together and maintain some small level of community involvement.

You may recognize their names from their May 22nd Arc video at the Coalition Rally or from the touching Family Stories video earlier this year.

Pat and her family reside in Senate District 9 and House District 18. Her children, Casey and Jason, receive services through Southeastern Regional MH/DD/SAS Services (SRMHC) LME.

Parent Perspective and PBH Inquiry

---------- Forwarded message ----------
From: Pat Wiegand
Date: Mon, Jun 18, 2012 at 2:22 PM
Subject: Re: re- PBH Inquiry
To: Rachel Porter

Dear Ms. Porter,

I am interested in the salaries of all PBH executives. I feel as the families of the IDD consumers we have a right to know how much of the funding is taken from them to pay high salaries. We as a group would also like to know how PBH is paying 14 million dollars for a building that to the best of our knowledge is for paper pushers. We don't believe there are any services in the building benefitting clients if this is not accurate information I will be glad to pass along any corrections you may have.

Thankyou,

Ms. Patricia Wiegand

ps I would appreciate a response before the DWAC meeting wednesday


On Mon, Jun 18, 2012 at 1:57 PM,
Rachel Porter wrote:
> Dear Ms. Wiegand,
>
> I am responding to your inquiry regarding Pam Shipman’s salary. Ms. Shipman
> has held the position of CEO at PBH since July, 2011. Her salary is $160,000
> annually.
>
> Please let me know if I can help further.
>
>
> Best regards,
>
> Rachel Porter
>
>
> M. Rachel Porter
> Director of Communications
> 4855 Milestone Avenue
> Kannapolis, NC 28081
> www.pbhsolutions.org
> 704.939.7705
>
> CONFIDENTIALITY: This e-mail (including any attachments) may contain
> confidential, proprietary and privileged information, and unauthorized
> disclosure or use is prohibited. If you receive this e-mail in error, please
> notify the sender and delete this e-mail from your system.

------ Pat's original email, sent 6/13 ------

To Whom it may concern

I am writting this request to find out if and where the salaries for executive officers of PBH can be found . It is our understanding that as a goverment funded company it should be made available to the public.
I look forward to hearing from you as soon as possible as we have meetings where I would like to present the needed information.

Respectfully,

Patricia Wiegand

email to Senator Neal Hunt

May 9, 2012

To: NC Senator Neal Hunt [neal.hunt@ncleg.net, nealh@ncleg.net]

Subject: Personal Response & Request to Meet Re: Neal Hunt News

Dear Senator Hunt,

Thank you for you including me in your recipient list with the informative newsletter regarding the many successful accomplishments and challenges overcome by the North Carolina legislature to improve the lives of the citizens of this State.

As a parent of two young children, I applaud your efforts toward improving the quality of education for our youngsters and for making environmental protection a priority. As the wife of a small business owner, I appreciate your plight in tax reduction and putting our State's budget in check. --Not unlike most parents, my greatest desire is to instill in our precious children a healthy respect for life, knowledge and nature and to see them grow to one day become productive, compassionate leaders who shall make the world a better place for generations to come.

At least that is my hope for Liam, our happy, healthy, typically-developing 5 year old son.

Liam's 14 year old sister, Isabel, however, will never "grow up," never attend college, and never live independently. In fact, she may never verbally speak nor progress beyond the cognitive capabilities of a toddler, and we've been potty-training for over a decade. You see, Isabel is a child with profound special needs and developmental disabilities, born with a one of a kind genetic rearrangement never documented prior to her birth. She is also a Medicaid Waiver / CAP recipient who, along with her family members, will be critically and detrimentally affected by the implementation of NC House Bill 916's new 1915(b)(c) Innovations Waivers in its current design.

As a parent with extensive Medicaid and CAP services experience, I will be among the first to admit that change was long overdue, however, I cannot help but feel that in the race to alleviate historical abuse of the system and establish a self-sustaining managed care solution, the human element has been sorely lost in this process. Though the train has left the station and there is no turning it around now, I am confident that the final destination can be greatly improved. --The best ideas usually come from the best of intentions, though when poorly executed... well, you know what they say about paving those roads.

As your constituent, I am responding to your email to respectfully request an opportunity to meet with you to discuss my concerns as a parent, stakeholder, and citizen of the State on behalf of my little girl and all special populations.

For your convenience, I have attached in this mail my previous letter and enclosures to Governor Beverly Perdue outlining in more detail concerns shared by many families across the State, copied to all members of the General Assembly on February 25th.

I will be contacting your office in the days following to schedule an appointment. I look forward to the opportunity to meet with you in person at your earliest convenience. 

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

Kind regards,

--

Crystal J. De la Cruz - Hopper

Mother, Advocate & Concerned Citizen

contact info...

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

On Wed, May 9, 2012 at 1:40 PM, Sen. Neal Hunt <Neal.Hunt@ncleg.net> wrote:

	LEGISLATIVE NEWSLETTER K. NEAL HUNT 308 LEGISLATIVE OFFICE BUILDING District 15, Wake County May 9, 2012
Legislature 733-5850 nealh@ncleg.net	www.nealhunt.com	Business 781-3464 info@nealhunt.com

In one week the legislature will convene for the “short” session which meets during even years. The primary purpose of the upcoming short session is to make needed budget adjustments to the two year budget which we passed in 2011. The adjournment resolution from the 2011 long session stipulated that only budget amendments, noncontroversial local bills or bills that had passed either the House or the Senate can be considered. Typically the short session does not last very long as politicians want to go home to run their campaigns for reelection.

I thought it might be helpful to outline the accomplishments of the “long” session which ended July 1, 2011. As you may be aware, the new leadership of the Legislature found many challenges when we took office in January 2011. We had an approximately $3 billion budget hole left for us by the previous leadership. Excessive government spending, termination of federal stimulus dollars and loss of revenue due to the recession were the causes of this huge shortfall. We were able to fulfill our promises. To summarize last year’s session:

Actions Promised - Actions Accomplished:

1. HB-200 passed Bipartisan Balanced Budget – Reduced spending by over $1 billion and avoided a tax increase (we already had the highest taxes in the southeast). As Co-chair of Senate Appropriations, I can attest to many long days and nights to get the budget balanced. Governor vetoed…Legislature over-rode. 
2. SB-689, SB-283, H-777 passed fair and legal Redistricting Maps for Congressional, State Senate and State House districts. Received US Department of Justice pre-clearance approval. Legislative attorneys are currently in court defending against lawsuits brought by the Democrat Party and the NAACP. 
3. SB-33 passed Medical Malpractice Liability legislation. Helped to make health care affordable and available while reducing the cost of health care by eliminating the need for the practice of defensive medicine.Governor vetoed…Legislature over-rode. 
4. HB-709 passed Workers’ Compensation Reform Legislation. 
5. SB-781 passed Regulation reform legislation to make North Carolina businesses more competitive and to insure that our state’s regulations do not overburden those businesses. 
6. HB-2 passed legislation to exempt North Carolina citizens and businesses from the high cost of National Health Care proposed by President Obama (Obamacare). Governor vetoed…Legislative over-ride pending. 
7. SB-709 passed Energy Jobs Act legislation to study the possibility of “fracking” and off shore oil drilling. Job creation and energy independence are the goal if this energy production can be done with no environmental damage.Governor vetoed…Legislative over-ride pending. 
8. HB-351 passed Voter (photo) ID legislation to promote and ensure honest and fair elections. Governor vetoed…Legislative over-ride pending. 
9. SB-532 passed Employment Security reform legislation to reorganize, improve operation efficiency, and set on a pathway to solvency. Governor vetoed…Legislature over-rode. 
10. Education Reform – Passed Education Reform to re-direct education funding into the classroom, added 1,100 new teachers, eliminated Charter School Cap, and required all third grade students to be reading proficiently before advancing to fourth grade. 
11. As you can see, we had a busy agenda, but with hard work and strong leadership, we delivered on our promises to the people of this great State.

These actions are just the beginning of our effort to create a business-friendly environment and energize the private sector economy to help create jobs in North Carolina

In 2013 our plan is to present a comprehensive North Carolina tax modernization proposal which will allow our state to be competitive in a 21st Century global economy. Our goal is to produce a tax system that is transparent, simple, and promotes economic growth and prosperity for all.

Your comments and thoughts are welcome.

Neal

If for any reason you do not wish to receive further newsletters, please reply to this e-mail and type in “Unsubscribe” on the subject line.

Join in the conversation and connect with me on Facebook and Twitter

Federal Government changes re Long Term Care

May 9, 2012

From: Mary K. Short [MaryKShort@aol.com]

Subject: Federal Government changes re Long Term Care

I would like you all to read the information below. I have been following the changes that are talked about. I have been sending you all some information about what is happening at the federal level ... even The Arc put the information about the new Administration on Community Living (ACL) in their Action Alert. On April 17th I sent an email with the press release about the new ACL to Rep. Dollar and Rep. Avila asking them to use that information as a basis for stopping the further implementation of this move to Managed Care! I asked for them to consider the idea of moving IDD to Dept. of Aging or Dept. of Long Term Care because that is the direction the feds are taking. (http://www.hhs.gov/news/press/2012pres/04/20120416a.html.)

The information is from Steve Gold, an ADA attorney in PA, http://www.stevegoldada.com, is clear. Please use this information when you contact your Legislators! This is about NOT moving us to a capitated managed care system.

Mary K. Short

828-632-5888 or 704-451-4144 (cell)

From: ncadvocacy@yahoogroups.com

Reply-to: notify-dg-ncadvocacy@yahoogroups.com

To: ncadvocacy@yahoogroups.com

Sent: 5/9/2012 6:22:25 A.M. Eastern Daylight Time

Subj: [ncadvocacy] Digest Number 2011

Messages

________________________________________________________________________

1. Fw: [NYAPRS Enews] Gold Urges States to Adopt Community First Choice

    Posted by: "lauriecoker" 

    Date: Tue May 8, 2012 7:18 am ((PDT))

The Centers for Medicare and Medicaid announced this funding program, the "Community First Choice" option, just last week. It is a funding option that would specifically impact our citizens who could live independently with some services rather than being housed in large facility settings such as many of our adult care homes or "assisted living" facilities. It aims to impact states like ours, New York, and others that have become dependent on the convenience of placing people in "homes" -- some of which have 100 plus beds!

New York, which has had a similar ruling by the DOJ to ours about the institutional bias and limiting rightful choices for citizens, is planning to use this to change their behavior.

We could use this to help us in the very near future, but we have to advocate for it!

See some of Steve Gold's strategy suggestions re: this opportunity, below. It may be time to build a cross-disability coalition to bring change.

Please talk to decision-makers about using dollars for services in real community settings so that individuals can envision personal lives with goals and hopes. It costs less to the taxpayer, and surely less to the person who wishes to live differently than in a facility based setting.

Laurie Coker

Director, NC CANSO

North Carolina Consumer Advocacy, Networking, and Support Organization

Citizen self-advocacy and empowerment - State-wide from Winston-Salem

www.nccanso.wordpress.com

There is no more blessed bondage than to be a prisoner of hope.     --R .Z. Kemp

----- Forwarded Message ----

Sent: Tue, May 8, 2012 7:50:39 AM

Subject: [NYAPRS Enews] Gold Urges States to Adopt Community First Choice Programs

NYAPRS Note: New York State officials have already committed to adopting the CFC program, which will also apply to those at risk for residing in what’s called an IMD (institute for mental disease) that includes facilities over 16 beds.

Community First Choice Regulations Published.

Steve Gold  May 2012  Information Bulletin # 357

Let's hear the trumpets and the Halleluiahs chorus.

Finally, the Department of Health and Human Services / Centers for Medicare & Medicaid Services issued the final regulations for the Community First Choice option. The regulations state that CFC's scope is designed to make available home and community-based attendant services and supports to eligible individuals, as needed, to assist in accomplishing activities of daily living, instrumental activities of daily living, and health-related tasks through hands-on assistance, supervision, or cueing.

CMS listed CFC's Total Benefits as providing States with additional flexibility to finance home and community-based services and attendant services and supports. The regulations state that CFC will increase State and local accessibility to services that augment the quality of life for individuals through a person-centered plan of services and various quality assurances. CMS further noted that CFC reduces the financial strain on States and Medicaid participants.

CFC is a win-win for States to save money and for people who need community-based and attendant services to stay in their homes and apartments.

For many years, the Community First Choice was strongly supported and initiated by ADAPT, a national grass roots organization of people with disabilities of all ages and all disabilities. ADAPT organized large numbers of supporters, testified before Congressional committees, and last week demonstrated in front of HHS's Washington offices demanding CMS release CFC's regulations.

Now that the federal regulations have been released, the struggle shifts to you disability and aging advocates in each State - to make sure this program is implemented in your State. Nothing happens automatically. Unless advocates demand CFC state-by-state, it will not happen. Yes, another local effort but quire worth the effort.

Here's why your State should amend its Medicaid Plan to include the CFC the federal government will pay an additional 6 percentages to your State's Federal Medical Assistance percentages. (Go to http://aspe.hhs.gov/health/fmap.htm to see what the FMAP is now WITHOUT the additional six points.) That translates into a LOT of federal money!

Another reason: yes, your State can save a lot of State funds while at the same time complying with the ADA/Olmstead requirements to prevent unnecessary isolation and institutionalization of people with disabilities.

Here's a brief summary of the final regulations:

1. CFC provides home and community-based attendant care services and supports to persons with disabilities.
2. Such services must assist the individual with activities of daily living, instrumental activities of daily living (e.g., shopping cleaning) and health-related tasks.
3. States can provide, at the State's option, transition costs (rent and utility deposits, first months rent/utilities, basic kitchen/bedding needs).
4. Individual eligibility requires that the person with a disability meets your State's institutional level of care criteria. The person need not be in the institution nor packing their bags or at risk of being imminently institutionalized. If the person meets the level of care for the institution, the CFC services can be provided.
5. Individual financial eligibility is the same as what your State has established for the institution.
6. Under the CFC, States must use a person-centered service plan and the services must be self-directed, either with a self-directed service budget or an agency-provider model.
7. This plan must be in writing and agreed to by the individual and must be based on a functional needs assessment. The regulations state that the person-centered service plan must reflect the services and supports that are important for the individual to meet the needs identified through an assessment of functional need.
8. These plans must be reviewed, and revised upon reassessment of functional needs, at least every 12 months, when the individual's circumstances or needs change significantly, and at the request of the individual.

What advocates must do:

1. Your State Medicaid Plan must be amended to include the CFC. Advocates should be at the table to ensure the services meet your needs.
2. You need a statewide, multi-disability coalition and strategy to ensure your State amends its Medicaid plan to include the CFC. If your State does not already have such a coalition, the CFC presents an opportunity to develop one.
3. If your State has such a coalition, convene it!
4. You need to show your Governor why s/he should amend your State's Medicaid plan to provide CFC services. This will require real live people who want and need CFC services. They must be ready to speak out. CFC is a critical opportunity to end waiting lists.
5. You should get to your media and explain how this program will save your State money, while bringing into your State additional Federal funds.

Steve Gold, The Disability Odyssey continues

Back issues of other Information Bulletins are available online at http://www.stevegoldada.com.
FYI:  This is the link to the actual regulation (45 pages!)  It is still open for public comment and if you click on the link, there is a section that explains how to make public comment. This is about multiple populations ... elderly, other adult disabled, and IDD. This relates with the federal move to an "Administration on Community Living" department that was created.

http://www.gpo.gov/fdsys/pkg/FR-2012-05-03/pdf/2012-10385.pdf

DEPARTMENT OF HEALTH AND HUMAN SERVICES

Centers for Medicare & Medicaid Services

42 CFR Parts 430, 431, 435, 436, 440,

441, and 447

[CMS–2249–P2]

RIN 0938–AO53

Medicaid Program; State Plan Home

and Community-Based Services,

5-Year Period for Waivers, Provider

Payment Reassignment, and Setting

Requirements for Community First

Choice

AGENCY: Centers for Medicare &

Medicaid Services (CMS), HHS.

ACTION: Proposed rule.

email invite to Representative Nelson Dollar

Republican Representative Nelson Dollar, from Cary, NC, has served 4 terms in the NC House of Representatives for District 36 of Wake County and was a Primary Sponsor of House Bill 916. Currently, he is Co-Chairman on both the Health and Human Services (Standing) Committee and the Joint Legislative Oversight Committee on Health and Human Services (Non-Standing) Committees, and a Member on the Health and Human Services Subcommittee on Mental Health. On February 15th of 2012, he filed for re-election. 

25 March 2012

Sent via email:

Dear Representative Dollar,

My name is Crystal J. De la Cruz - Hopper. Last month you and other members of the North Carolina General Assembly received a copy of a letter I sent to Governor Beverly Perdue. As I understand, both you and Senator Hartsell forwarded my correspondence along to Dr. Pat Porter; I'd like to take this opportunity to thank you for interest and assistance in opening a dialogue as a parent of a special little girl, Isabel.

While I sincerely hope that at some point in the near future, I might have the opportunity to meet with you personally to discuss concerns regarding the new Waiver changes, I can only imagine the overwhelming magnitude of the plate now before you and the stress you must be under dealing with issues at hand, so I recognize you probably could use a break. I am writing to you now to extend a personal invitation (all political chatter aside) for you and your family to come out and enjoy a game of baseball as perhaps you have never before experienced...

I profess, I've never been very sports-minded, perhaps because I personally lack the coordination required to walk and chew gum at the same time. My husband on the other hand, as I often jest, would no doubt find appeal in competitive squirrel-wrestling if it were am athletic event. I do enjoy World Cup soccer, Ice Hockey and occasionally Collage Basketball depending on who's playing so rarely do we enjoy sporting events as a family. Of course since our five-year-old son, Liam, has been taking Tae Kwon Do (and recently earned his Green Belt), I've added that to my short list of athletic interests, however the idea of baseball has always bored me to tears... that is, until our daughter joined the Miracle League of the Triangle.

Established in 2006, the Miracle League of the Triangle, is an amazing non-profit organization orchestrated by an extraordinary group of dedicated volunteers whose goal is simply to provide children with special needs an opportunity to play baseball.

There are numerous teams each with their own jerseys, hats, and coaches. There are bats and mitts, concession stands, a real ball field, bleachers, and dugouts... just like in baseball. There is even a proper baseball announcer and coolest of all, every child has their own "walk out" song.

Our Bella chose Eddie Murphy's rendition of "I'm a Believer" from the original Shrek soundtrack.

And this is why I'm now a baseball fan:

Watching the faces of all these kids out there playing ball... some smiles couldn't be missed and some wore theirs on the inside... some run their little hearts out around the bases and turn cartwheels, some walked slowly with braces and had to be carried to home, some made it on wheels, and one kid rounding second that just decided to sit down and take a load off mid-game (yep, that would've been MY child)... But no one struck out and everybody won... and the pride which ruminates from the field, from the stands, from each little being is nothing short of miraculous... because they are each a part of something bigger than themselves, something fun and spirited and above all, something that included them, counted them, and recognized them... cheered for and acknowledged them and for an hour, gave each child a sense of normalcy within their own diverse community of teammates, coaches, buddies, parents, friends, and even strangers where no one stared, no one ignored them and pretended that they weren't there... and everyone celebrated the fact that they were.

I would like to invite you Representative Dollar to take a time out and swing by with your wife, Lorrie, and son, Ian, for an afternoon, or even an hour, of sheer magic. Just one game. --Few things in my life raising a child with profound special needs have ever revived my soul and renewed my faith in humanity quite the way watching these kids play baseball has... I would be honored to share such a moment with you and yours.

I've attached both my daughter's schedule (Isabel plays on the Marlins) and the full team schedule for the Spring season, as well as my original letter to Governor Perdue just to refresh your memory, if needed, of who I am.

Miracle League games are held near to you in Cary at Andy's Foundation Field, Adams Elementary School, located at 805 Cary Towne Boulevard.

And you have my most sincere promise, should you wish to join us (and I dearly hope that you will), that I will do my utmost to assure your presence is respected and your time protected for sole purpose of enjoying some baseball magic and family. Hot dog's on me.

My contact information is below.


Sincere regards,
--

Crystal J. De la Cruz - Hopper
contact information...

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
contact information...

email to Representative Bill Current

Republican Representative William Current from Gastononia, NC, has served 4 terms in the NC House of Representatives representing District 109, Gaston County. Currently, he is a Co-Chairman on the Health and Human Services (Standing) Committee and Member on the Appropriations Subcommittee on Health and Human Services (Standing), Health and Human Services Subcommittee on Mental Health and the Joint Legislative Oversight Committee on Health and Human Services (Standing), (Non-Standing). He has not filed for re-election.
 
March 14, 2012
Sent via email:

To: Representative Bill Current with re-forwarded 02/25 email to Members of the NC House and attached letter and enclosures to Governor Perdue per request following the 03/13 Joint Legislative Oversight Committee Meeting on Health and Human Services:


Dear Representative / Dr. Current or Bill per your request,

First, please know that my southern upbringing makes it difficult to address you informally as Bill, though I find your insistence in being recognized as a sincere person of the people both admirable and refreshing. I hope you don't mind my saying, upon meeting you briefly yesterday you reminded me very much of my late grandfather (in his best ways), a WWII veteran and former Johnston County Magistrate, who was a strong, unbending personality of sincerity and character to say the least.

Once more, I wanted to thank you kindly for taking a moment to chat with me as a parent of a beautiful little girl with profound developmental disabilities who, along with her family and many families such as ours across the state, will be directly and critically affected by the new Medicaid Waiver plan under 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.

You mentioned when we spoke that you would only be around (in your legislative seat) through December and expressed confidence in the ability of 'the smart, younger fellows to sort it all out.' I can only imagine that the roles of Members in the NC General Assembly are demanding and no doubt tireless; I do not doubt the hard work and dedication of all the members of legislature. Though with all due respect, I wish I shared your confidence. You see, there is a world of difference between intelligence and wisdom. Just as one cannot possibly know the life nor hardships of another without walking a mile in those ragged shoes, it is the experience of life itself, full of change and challenge, personal growth, sacrifice, humility and gratitude from which wisdom derives.

As mentioned, please see attached my letter and enclosures to Governor Perdue outlining in more detail my concerns and sharing an intimate glimpse into our life and a not-so-dissimilar story to many families across the State of North Carolina. Please, please take a few moments to read the words; they represent the lives of many.

I welcome you to contact me at any time should you have questions or if I can be of any assistance. I would very much like the opportunity to meet with you again for further dialogue at any time that is convenient for you. I can make myself available any time you're in Raleigh and would even be willing to drive to Gaston County. I work with my husband, a local small business owner, so that occasionally affords me flexibility - to love my child the best way I know how.

Thank you in advance Bill for your attention and consideration.

I look forward to speaking with you soon.


Kind regards,

--

Crystal J. De la Cruz - Hopper

Mother, Disability Advocate, & Concerned NC Citizen

contact information...

email to Senator Tommy Tucker

March 13, 2012

Sent via email:

To: Senator Tommy Tucker with re-forwarded 02/25 email to Members of the NC Senate and attached letter and enclosures to Governor Perdue per request following the 03/13 Joint Legislative Oversight Committee Meeting on Health and Human Services:

Dear Senator Tucker,

I very much appreciate your taking the time today to speak with me briefly regarding my concerns as a parent of a beautiful little girl with profound developmental disabilities. I know how busy you must be and how full your plate as a member of the NC General Assembly, committee member and vice-chair on the various Health and Human Services related committees, so I value the time you spared for me to chat.

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.

As mentioned, please see attached my letter and enclosures to Governor Perdue outlining in more detail my concerns and sharing an intimate glimpse into our life and a not-so-dissimilar story to many families across the State of North Carolina. Please, please take a few moments to read the words; they represent the lives of many.

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.

I welcome you to contact me at any time should you have questions or if I can be of any assistance. I would very much like the opportunity to meet with you again for further dialogue at any time that is convenient for you. I can make myself available any time you're in Raleigh and would even be willing to drive to Union County. I work with my husband, a local small business owner, so that occasionally affords me flexibility - to love my child the best way I know how.

Thank you in advance Senator Tucker for your attention and consideration.

I look forward to speaking with you soon.

Kind regards,

--

Crystal J. De la Cruz - Hopper

Mother, Disability Advocate, & Concerned NC Citizen

contact information...

email from Dr. Pat Porter

March 6, 2012

Response via email:

From: Dr. Patricia Porter, UNC adjunct Professor / DD and Policy Expert / hired Consultant to the NC General Assembly:


Hello Ms. De la Cruz-Hopper,

It was a pleasure to speak with you last week. As you know, Senator Hartsell and Representative Dollar asked that I contact you in response to the letter you sent to Governor Perdue and copied to members of the General Assembly. They were impressed with the comprehensiveness of your representation of your daughter’s status and the struggles you have had assuring that she receives the services and supports she needs as well as your concerns about issues that you have heard and read that may come from changes related to the statewide implementation of the Medicaid B-C Managed Care Waiver. You surely have done your homework and I believe you have done your best to become well informed about the changes to come in our MH-DD and SA system of services.

As you noted at the end of our conversation, there is a good bit of misinformation coming out about these planned changes and in some instances, an absence of factual information for families. As your own LME ( Wake) proceeds to prepare for the transition from a fee-for-services to a managed care operation, you are wise to make sure that you are being made aware of these plans and the potential impact of the changes. I understand that information and discussion opportunities are being planned and there is a request for questions currently posted on the Wake website. http://www.wakegov.com/humanservices/waiver/questions.htm

You may know that the session law (attached) directing the statewide expansion of the B-C Waiver has a number of specific provisions that require both the Department of Health and Human Services and the Local Management Entities to assure that the system is structured so that stakeholders, such as yourself, have meaningful knowledge of and input into the development of the new operation now and as it is established. LMEs have been conducting meetings with those receiving services and those currently providing services to discuss the changes and I hope you have been able to participate in those and in subsequent such meetings. Some of these forums have been conducted by the Jordan Institute for Families of the University of North Carolina School of Social Work under the direction of Professor Gary Nelson with a particular focus on the outcomes we hope to achieve with this system as they effect persons with disabilities and their families. The Department of Health and Human Services has recently established a Waiver Advisory Council http://www.ncdhhs.gov/mhddsas/providers/1915bcWaiver/index.htm comprised of stakeholders for the purpose of obtaining advice and council on the development of this new system. These meetings are open to the public and I would encourage you to attend and participate. There is an abundance of information about the B-C Waiver implementation on this website and you may want to take a look at the Strategic Plan listed there.

As we discussed, this is a significant change for the state of NC but a change that was deemed necessary by both the Department of Health and Human Services and by vote of the NC General Assembly. Transitions of this kind are necessarily disconcerting. While it is understandable that many individuals who have received services in the current system and some who have delivered those services would like the system to continue under its present structure, the decision was made that this is just not feasible. There are long waiting lists for service, some providers have not been of highest quality , some individuals and families have had to endure a revolving door of service providers with no reliability or consistency in service delivery, research has demonstrated that there is currently no relationship to the intensity of need of those who receive services and the services they receive. Some with relatively low need receive the highest cost services while many with very high need receive no services at all. In these lean budget times and with the pending changes in federal health care set to go into place in 2014, it is critical for the General Assembly, in concert with the DHHS and stakeholders to develop an accessible system that is of highest quality, responsive to the needs of people with IDD, MI, SA and their families and well managed to assure that both federal and state dollars are fairly and equitably allocated to the best benefit of the diverse population in need of services. Accountability is built in at every step with both internal and external evaluation of both program outcomes and expenditures. The General Assembly is committed to the development of this system with the meaningful input of individuals with disabilities and their families and with a foundation in evidence based outcomes. Your input and that of other key stakeholders is vital in assuring that the system achieves these intended goals.

I hope I was helpful as I answered your specific questions about the implementation of the B-C Waiver and its potential impact on services for your daughter and other people with IDD in our state. You suggested that you would like to develop a list of additional questions that we could discuss in a face-to-face meeting and I am happy to do that. Please let me know when you would like to schedule that meeting.

I look forward to speaking with you again.


Pat Porter

Patricia Porter, PhD, Consultant  

Health and Human Services 

North Carolina General Assembly
301-B Legislative Office Building
300 N. Salisbury Street
Raleigh, NC 27603
(919) 301-1982

enclosure email to CMS

February 24, 2012

Sent via email:

To: Centers for Medicare and Medicaid Services

Cindy Mann, JD, Deputy Administrator / Director of State Operations [Cynthia.Mann@cms.hhs.gov] 

Ms. Connie Martin, Waiver Analyst for NC [connie.martin@cms.hhs.gov]

Subject: Letter to NC Governor Perdue re NC HB 916 / 1915(b)(c) NC Medicaid Waivers

Dear Ms. Martin and Ms. Mann,

Per my recent conversation with Ms. Martin, please find attached my letter and enclosures to North Carolina Governor Beverly Eaves Perdue regarding North Carolina House Bill 916 in relation to the 1915(b)(c) Medicaid Waiver programs and its detrimental impact to the supports and services of the Developmentally Disabled recipients and their families across the State of North Carolina. Including my daughter, Isabel.

This letter will go out in tomorrow's postal mail to Governor Perdue and subsequently to the members of the NC House of Representatives, Senate, and others copied in days following.

I respectfully request to be kept abreast of any developments, actions, investigations, and the like, relating to North Carolina's restructuring of the 1915(b)(c) Waivers under HB 916

Please do not hesitate to contact me at any time with questions and for further dialogue.

Thank you in advance for your time and attention on this very important matter.

Kind regards,

--

Crystal J. De la Cruz - Hopper

Mother, Disability Advocate, & Concerned NC Citizen

contact information...

email to NC House of Representatives

February 24, 2012

Sent via email; with attached letter to Governor Perdue and enclosures:


To: Members of the North Carolina House of Representatives

Subject: Letter to NC Governor Perdue re NC HB 916 / 1915(b)(c) NC Medicaid Waivers


Dear Member of the North Carolina House of Representatives,

While I may not be among your direct voting constituents, I am writing to you as 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 the new 1915(b)(c) Medicaid Waiver plan under NC House Bill 916 (now SL 2011-264) if allowed to proceed as intended.

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 HB 916.

I greatly appreciate you taking the time to read my words as I can think of no more important topic on the State's Health and Human Services agenda. I invite you to please contact me at any time should you have any questions, desire further dialogue, and to meet with me personally.

I respectfully request a written response relaying your position and intentions regarding North Carolina House Bill 916. I would like to be kept abreast of 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.

It is my most sincere hope that you will carefully examine and consider this matter, make an effort to communicate with those who will be directly affected, to include not only families but small business service providers and case managers in the field, and most importantly, know and understand the desperate needs of those whose very quality of life lies now in your hands.

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.

I look forward to your reply.


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

email to NC Senate

February 24, 2012
Sent via email:


To: Members of the North Carolina Senate

Subject: Letter to NC Governor Perdue re NC HB 916 / 1915(b)(c) NC Medicaid Waivers

Dear Member of the North Carolina Senate,

While I may not be among your direct voting constituents, I am writing to you as 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 the new 1915(b)(c) Medicaid Waiver plan under NC House Bill 916 (now SL 2011-264) if allowed to proceed as intended.

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 HB 916.

I greatly appreciate you taking the time to read my words as I can think of no more important topic on the State's Health and Human Services agenda. I invite you to please contact me at any time should you have any questions, desire further dialogue, and to meet with me personally.

I respectfully request a written response relaying your position and intentions regarding North Carolina House Bill 916. I would like to be kept abreast of 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.

It is my most sincere hope that you will carefully examine and consider this matter, make an effort to communicate with those who will be directly affected, to include not only families but small business service providers and case managers in the field, and most importantly, know and understand the desperate needs of those whose very quality of life lies now in your hands.

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.

I look forward to your reply.


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