NC House Bill 916 is NOT the Answer!: May 2012

Respectfully,

Representative Current, Chair
Representative Dollar, Chair
Representative Hollo, Chair

I hereby certify this notice was filed by the committee assistant at the following offices at 9 AM o’clock on May 30, 2011.

Principal Clerk
Reading Clerk – House Chamber
Wendy Miller (Committee Assistant)

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:

DMA 8M Clinical Coverage Policy for CAP-IDD proposal posted for 45 day Public Comment period (05/12 thru 06/26).
DMA 8M Clinical Coverage Policy for CAP-IDD proposal posted for 15 day Public Comment period (07/28 thru 08/11).

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:

DMA Clinical Coverage Policy for CAP-IDD proposal Public Comments from May 12, 2011 thru June 26, 2011 (101 comments; 79 pages).
DMA Clinical Coverage Policy for CAP-IDD proposal Public Comments from July 28, 2011 thru August 11, 2011 (439 comments; 539 pages).

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

29 May 2012

Legislative Correspondence from a Provider

In my research, and most especially my conversations and dialogues with members and representatives of the General Assembly - and yes, event PBH Consumer Affairs folks, throughout this controversial DD managed care overhaul, there seems to be a common theme regarding the poor quality of dishonest providers abusing the system as an argument for reform. --While I know they are out there, I personally have not had such experiences and find the habit of tossing all the apples in one basket offensive... The various agencies and professionals I have had the pleasure of working with in over 10 years have always proved exemplary, going above and beyond to assist families such as mine and assure our needs were met.

Were it not for my agency QP, I would have lost my job years ago when we had to fire both my staff for unethical conduct. Every day this woman picked up my child from school and cared for her personally for 3 weeks or more while I worked at the time as a contractor (with no benefits) at FPG Child Development Institute at UNC-CH and searched for new care-givers. I was a single parent then; I could not have done it without her nor without the peace of mind that Isabel was well taken care of.

Below is an email (posted with permission) from an agency Qualified Professional from A Small Miracle here in Raleigh. Though ASM isn't the agency I referenced, I can attest they are among the best in the field; their reputation is one of compassion and love for what they do and are they are well loved by their families because of it.

Just one example of the many non-family small business stakeholders who will be greatly impacted by changes to come.

Wendy is a constituent of NC Senate District 17 and House district 37.

Legislative Correspondence

from a Provider Perspective

From: Wendy Singleton
Date: Fri, 25 May 2012 10:46:23 -0400
Conversation: Imploring you to FIX HB 916!
Subject: Imploring you to FIX HB 916!

Good Morning Representatives:

I am contacting each of you today appealing for further review and overhaul of proposed HB 916, with extra plea Representatives Mr. Barnhart, Mr. Dollar, Mr. Burr, Ms. Insko, Mr. Ingle, Mr. Moffit, and Mr. H. Warren. As a community member, constituent, taxpayer and proud advocate for individuals with special needs I am deeply troubled by the proposed statewide expansion of the 1915 (b)/(c) waiver.

If the The 1915 (b)/(c) Waiver goal is “for implementation improvements in the Medicaid program designed to increase cost effectiveness, efficiency, consumer access, consumer choice and provider quality. . .” as a qualified professional, NCI instructor and therapist working in the field with the IDD population I can say from first hand experience this proposed waiver is not meeting goals.

-The overhead costs of new vs. refurbished buildings does not save money, nor does elimination of targeted case management with two new jobs of Care Coordination and Community Guide as well as Qualified Professionals writing individual’s short term goals. Purported savings with the 5 county model are now being refuted, with legal cases surrounding “satisfaction rates” and “Savings” from this waiver model.

-Efficiency is no longer a word most families, staff, QP’s and current case managers would use to describe the process of the CAP system. With lessened oversight and elimination of third party case manager the proposed waiver will likely become as efficient as the now defunct Value Options authorizing entity. As targeted case managers are being told their jobs will be eliminated on January 1st, 2013 many highly qualified, gifted and talented advocates are leaving their jobs to provide for their families. This has left many of our families without a case manager or plans not being authorized in a timely manner requiring provider agencies in some cases footing the bill until they can be paid—Many smaller agencies have closed their doors because they simply can’t afford to provide services on “good faith” of being paid. Individuals who have waited for CAP services for 5 or more years in some cases are being told by Wake County they may lose their CAP slot if services are not provided in 15 days, and their CAP slot is eliminated after 30 days without services—This should NEVER happen because of a lack of efficiency in a system purported to be created for the well being, consumer access, and consumer choice of individuals served!

-Individuals and their families once had a voice to advocate for what targeted case manager / agency they wished to have to provide best services for their loved ones. Today they have laryngitis. No longer are there several agencies to choose from, nor are there case managers available due to the overwhelming caseloads given to them at 45-80 individuals per case manager!!!! Families served feel ‘lucky’ to have a case manager, even if they don’t see them for 6 months or more due to overwhelming work load required of case managers in the field. The reason for this is that most people, when faced with certain job loss, will seek a different job. With the 1915 (b)/(c) model having no oversight with model due to authorizing body having decision in type/scope of service as well as no reputable process for mediation there are major concerns with families having ability to challenge decisions when one player holds all cards in the deck. The “Right Sizing” of the network poses even bigger questions for provider agencies in that there is no known parameters of criteria for elimination of a provider agency in the network.

-With the current freeze on new CAP recipients (formerly slots) access is simply not available. With the proposed waiver utilizing last month’s numbers as a benchmark for current need this will further increase lack of access due to some families not having staff available to them due to the 10% rate cuts already imposed on a burdened system, or family / individual situations such as hospitalization, accident or death. If an individual goes out of town for two weeks to travel out of state for a funeral / service, it is impossible and irresponsible to make a correlative relationship that the next month the person ‘survived’ with only two weeks therefore that is what they should receive in services.

Care Coordinators are not required to have advanced degrees, nor is the reimbursement rate adequate to entice providers to enroll to participate in this service, further eliminating access to services.

-Most provider agencies strive to provide the highest caliber and quality of services, and wish to continue to do so in a timely, organized, cost effective manner. I ask that you reconsider this waiver model until issues of oversight and alleged ‘budgetary savings’ can be addressed. Many families if given the opportunity would manage the money allocated to them very wisely, and if the model moves forward with more oversight and known system with third party entity to appeal decisions made by authorizing body for scope and amount of services provided for their loved ones would be more comfortable with restructure of the CAP system which is integral, imperative, and is cost effective in decreasing rates of institutionalization for the people we proudly serve.

As NAMI stated in a letter to Representative Barnhart last year on 1915 (b)/(c) waiver “We no longer have the resiliency to endure more failures”.

Thank you,

Wendy Singleton, QP
A Small Miracle Inc.
Raleigh, NC 27607
(919) 900-4422
(919) 900-4466 (fax)

-- This electronic message (e-mail) and any documents accompanying this message may contain confidential information that is privileged. This information is intended only for the use of the recipient named above. If you have received this e-mail in error, please notify us immediately by telephone at 1-800-760-0665 to arrange for return of the documents to us and you are hereby notified that any disclosure, copy, distribution, or taking of any action in reliance on the contents of this information is strictly prohibited.

*As special parents, our perspectives, interests, and priorities in various issues surrounding NC's new 1915(b)(c) Innovations Waivers and the changes they bring to our families differ according to the unique needs of each of our children.

If you have something to share, email: no2nchb916@gmail.com

Medicaid per diem Reimbursement Rates for State DD Facilities

Without proper home and community supports, the decision to place our children in State DD facilities may be a decision many special NC parents will be forced to make...

Donin, Carol Tue, May 15, 2012 at 8:26 AM

To: Crystal J. De la Cruz

Per your request, below are the per diem rates for the 3 developmental centers. These are the full cost rates and are inclusive of Medicare Part D and the ICF-MR Provider Tax. The per diem rates cover habilitative services, medical services and medications, dental services, all special therapies, adaptive equipment, nutrition, etc.

Caswell Center: $606.36
Murdoch Center: $536.36
Riddle Center: $482.36

Additional information may be requested through the DHHS Public Affairs Office, attention Julie Henry. Ms. Henry’s email address is Julie.henry@dhhs.nc.gov.

Thank you.

Carol Donin

Team Leader, Developmental Centers

Division of State Operated Healthcare Facilities

3006 Mail Service Center

Raleigh, NC 27699-3006

phone: 919-855-4700

fax: 919-508-0955

Please note that my email address has changed - carol.donin@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.

24 May 2012

response from Representative Cotham & reply

Representative Tricia Ann Cotham, from Matthews, NC has served 2.5 years in the NC House representing District 100 (Mecklenburg County). She is a member on the Health and Human Services Committee and Vice-Chairman of the HHS Subcommittee on Mental Health (both Standing).

Crystal J. De la Cruz Thu, May 24, 2012 at 9:19 PM
To: "Rep. Tricia Cotham" <Tricia.Cotham@ncleg.net>,

"Rosa Kelley (Rep. Cotham)" <Cothamla@ncleg.net>

Dear Representative Cotham and Ms. Kelley,

Thank you kindly for your prompt response and well wishes. I look forward to meeting you both in person.

Ms. Kelley, please advise when Rep. Cotham's schedule would permit a chat?

Thank you in advance for you assistance and consideration.

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

On Thu, May 24, 2012 at 6:26 PM, Rep. Tricia Cotham wrote:

Hi Crystal, Thank you for your email earlier this week about the Medicaid Waiver and your daughter Isabel. I'm happy to meet with you. Feel free to email my assistant, Rosa Kelley, for scheduling purposes. I've cc'ed Rosa on this email.

I hope you and your family have a nice Holiday weekend.

Representative Tricia Ann Cotham
NC House District 100

from Arc NC: What is Managed Care & Why It's Not a Good Fit

Re-posted from The Arc of North Carolina

What is Managed Care &

Why It's Not a Good Fit

WHAT IS MANAGED CARE?

Managed Care is a term used to describe a method of financing and delivering health care with the goal of lowering costs and improving the quality of care. It attempts to achieve these goals by focusing on the following techniques:

Fixed, prepaid capitation rates - As a cost control measure, Managed Care Organizations (MCOs) have a set amount of money to pay for any and all service requests, or “claims,” for a given month. The capped amount of money is often based on an estimate of how much money was used in the past. This means that an MCO has a hard and finite amount of cash to pay for services each month, regardless of how many claims it receives. If/when the money runs out, MCOs don’t have an obligation to continue services.
A closed network of providers - MCOs will decide upon specific standards of quality required for all providers. Then the MCO will choose, among the providers who meet those standards, which can offer services under their plan. By limiting the total number of providers in the network, it creates greater economies of scale (a smaller number of providers servicing the same population), with the idea that consistency in service will improve quality and reduce costs.
Formal utilization review - Enrollees are required to get prior authorization from their MCO before receiving certain services. This is primarily a cost-saving tool used to avoid paying for unnecessary services.
An emphasis on preventative care - Enrollees are encouraged to have regular “check ups” and other preventative care. The goal, based on a classic Medical Model approach, is to catch and cure medical issues in their early stages when treatment is the least expensive.
Financial incentives to encourage enrollees to use care efficiently - In this model, providers may be given incentives to control costs or change how they work with specific populations to save money and improve quality.

WHY MANAGED CARE ISN'T A GOOD FIT FOR PEOPLE WITH I/DD

When one hears the term “managed care,” the first thing that comes to mind is likely HMOs (Health Maintenance Organizations). There’s a reason for that. Managed care was created by, and intended for, health insurance groups managing medical issues: things like rehabilitation after a fall, heart disease, diabetes, and other common reasons to visit a doctor.

Expertise with the medical model has given many MCO’s some success with keeping costs down while maintaining a standard of medical care. We all know that the medical model doesn’t work for people with intellectual and developmental disabilities (I/DD), it’s a square peg for a round hole. What about cost? Do the cost-savings measures MCO’s maintain the necessary quality services and supports people with I/DD need? In many cases, the answer is no. Let’s look again at the core principles of managed care and see how they impact people with I/DD:

Fixed, prepaid capitation rates - Fixed capitation rates have had modest success in accurately predicting and reducing medical costs. But a recent report from the National Council on Disability, an independent federal agency cast doubts on its effectiveness for I/DD. It showed that states don’t have the data or measurement tools to accurately predict the costs of long-term services and supports as they’re administered now; let alone how they might be administered in the future. It’s tough to assign an appropriate lump sum dollar amount for services if you can’t predict the costs.
A closed network of providers - Creating a closed list of limited providers has real implications for individuals with disabilities. First, fewer providers will be asked to serve more enrollees. While providers will be asked to do more with less, individuals with I/DD will feel the pinch. Meanwhile, consumer choice will be limited. Long-term services and supports are individualized services that can impact nearly every aspect of daily life. An ongoing relationship with a trusted provider is important. If your provider is not on the list or you don’t like the service provider you’re working with, under an MCO model, you may have few alternatives to choose from.
Formal utilization review - Requiring prior authorization for services in a managed care system can make sense -- especially when you’re dealing with routine medical conditions. However, the needs of individuals with I/DD vary widely from person to person. A one-size-fits-all model simply can’t work, and often the people who authorize or deny services don’t have the expertise to make those decisions. Appealing denials will take time, and many individuals with I/DD may lack the support they need to successfully navigate this process.
An emphasis on preventative care - Preventative care is a good thing. We all want to be as healthy as we can be and avoid major illness tomorrow by taking care of ourselves today. Managed care can make it easier for us to take care of our health. This system understands the medical model well -- you fix what’s broken and prevent it from breaking in the future. People with I/DD aren’t broken. They need to be part of a system that truly understands that and provides services and supports that make the community around them more accessible.
Financial incentives to encourage enrollees to use care efficiently - Finally, incentivizing cost reduction can have some unintended consequences. While the goal is to find innovative approaches to provide better services at a lower cost, the reality can be devastating. The easiest way to control costs is to limit services, and long term services and supports is the most costly piece of Medicaid spending. Under a fixed, capitated model, MCOs have a finite amount of money to spend. What they don’t spend is used for other MCO priorities including profit or “reserves’. But it’s important to think long term about cost savings. Many long term services and supports for people with I/DD cost money upfront, but the savings will be recouped down the line. For example Early Intervention services have proven to lower the need for long term services but services for most people will still be needed. While many people can work with proper supports removing those supports can result in loss of employment. Good quality services designed in a person centered approach will allow individuals with IDD to live successful in communities but the supports will need to continue.

Parent Perspective: Voice from the Rally

The Coalition rally sponsored in part by The Arc of North Carolina was held in downtown Raleigh by the Legislative Building Tuesday, May 22, 2012. There was an impressive turn out considering what many of these parents and caregivers had to undertake just to travel to the State capital with their children in hopes their voices would be heard.

Pat, her daughter Casey and son Jason, and support friend Christy awoke at 4:45 am to travel to Raleigh, a round-trip mission of over 260 miles...

You may recognize Casey and Jason from this post.

P.S. Dearest Casey and Jason, It was SOOO nice to meet you both! Thank you Casey for the beautiful hug you gave me - you are sunshine! Love, Crystal

email to Rep. Tricia Cotham

Representative Tricia Ann Cotham, from Matthews, NC has served 2.5 years in the NC House representing District 100 (Mecklenburg County). She is a member on the Health and Human Services Committee and Vice-Chairman of the HHS Subcommittee on Mental Health (both Standing).

From: Crystal J. De la Cruz Tue, May 22, 2012 at 3:29 AM

To: Representative Tricia Cotham <Tricia.Cotham@ncleg.net>

Cc: "Crystal J. De la Cruz"

Subject: meeting request re: Medicad Waiver & special populations

Dear Representative Cotham,

Although I am not among your voting constituents, I am writing as a mother and advocate for a very special little girl, my daughter Isabel, and as a concerned citizen to respectfully request a meeting with you to discuss concerns regarding the new Medicaid 1915(b)(c) Waiver and the detrimental impact cuts in services and supports will have upon Developmentally Disabled recipients and their families.

The vast majority of us currently receiving services for our children living at home already do not receive the level of supports we need to keep it together because we are unable to staff our needs with people we trust to care for a child who cannot speak to tell us what happened at the end of the day - because one can make more money stocking shelves than CAP direct care staff.

The vast majority of us have really wonderful case managers and qualified professionals who do not abuse the system, but rather go above and beyond daily to let us know they care; we could not have gotten this far without their support. These are the people who will be without jobs at the end of this implementation; many who also own small agency businesses which will not survive this transition.

I understand the economic crisis our State faces. It's a mess. What I do not understand is how we can continue to skim off the bottom, digging one hole to fill another... and why these innocent children must pay the price of the mismanagement of others?

The DOJ found NC to be in violation of ADA and Olmstead. To rectify the improper placement of mentally ill citizens, DHHS plans to "deinstitutionalize" and reintegrate these individuals into more community supported environments... while recipients living at home with family or assistive living arrangements will not being afforded the necessary community-based supports to maintain present level performance and care so that families can keep them out of institutions.

It is my believe that many of the members of the North Carolina General Assembly who sincerely wish to assure that the wellbeing of our most fragile of populations receive the proper supports and protections, despite their best efforts, are not receiving the most complete information from all stakeholders necessary to make the best possible decisions for all involved. True, it is not an easy system to understand, even for those who live and work in it. --All the more reason that after so many proven failures, we slow this train down, get it right, and make certain that we arrive at the destination intended. --All the more reason that those who will be most affected by these decisions and changes - the innocent and vulnerable developmentally disabled children and their overwhelmed and exhausted families - have a voice and that voice be heard.

Currently, our voice is NOT being heard.

Currently, and perhaps most important of all, there are no appropriate appeal procedures in place for families regarding the care of their special loved ones and the hope of fail-safe due process protections are in dire jeopardy.

For your review, I have attached the letter and enclosures previously sent to Governor Beverly Perdue and members of the General Assembly earlier this year outlining concerns shared by many across the state. I would greatly appreciate any time you could afford me to discuss my concerns in more detail. I will plan to call your office for an appointment and look forward to the opportunity to meet with you.

Thank you in advance for your time and attention - on behalf of all special populations, and the families who love them.

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

Parent Legislative Correpondence

Colleen is the parent a 12-year-old son and CAP recipient with multiple diagnosis and special needs including an auto immune disease and Traumatic Brain Injury (TBI) attributing to many medical, developmental and behavioral issues. She also has another child with needs who is not being served. Posted with parent permission.

Colleen is in NC House District 36, Senate District 17 and will fall under Alliance Behavioral Health Care LME (formerly the Durham Center) upon implementation.

Legislative Correspondence

from another Parent Perspective

From: COLLEEN

Date: May 22, 2012 4:03:40 PM EDT

To: "Rep. Nelson Dollar" <nelson.dollar@ncleg.net>

Cc: [omitted]

Subject: Thank You

Representative Dollar:

Today I visited your office with my old Case Manager, my QP, my current CAP worker of 2 years and we discussed the current Waiver 916 that is slated to go into effect in January. I appreciate the secretary listening very intently to our concerns, which are the collective concerns of this population and their families.

I understand the need for fiscal responsibility and we care deeply about the direction our government has taken on spending, considering that my husband is one of the few 49% of taxpayers in America today. However, we both also deeply feel this is the wrong way to achieve fiscal responsibility, on the backs of some of our most voiceless, innocent and already struggling children and their families. This current Waiver proposal needs much deeper investigation by Legislative Members such as yourself, as there are very obvious problems and conflicts of interest with this current proposal. I urge you to restore INDEPENDENT CASE MANAGEMENT for the DD community. I also urge you to CREATE CHECKS AND BALANCES outside the MCO that compel them to be accountable to provide services as needed and to allow for a 3rd party binding conflict resolution entity.

Thank you again for your time. I will be watching closely to see what various legislators do with this urgent need.

Blessings,

Colleen

Parent Legislative Correspondence

Colleen is in NC House District 36, Senate District 17 and will fall under Alliance Behavioral Health Care LME (formerly the Durham Center) upon implementation.

Legislative Correspondence

from another Parent Perspective

From: COLLEEN Thu, May 24, 2012 at 11:12 AM

To: Senator Richard Stevens <Richard.Stevens@ncleg.net>,

Representative Nelson Dollar <Nelson.Dollar@ncleg.net>,

House Speaker Thom Tillis <Thom.Tillis@ncleg.net>,

Office of NC Governor <governor.office@nc.gov>,

Representative Justin P. Burr <Justin.Burr@ncleg.net>,

US HHS Commissioner Sharon Lewis <sharon.lewis@acf.hhs.gov>,

Joint Caucus Leader Marilyn Avila <Marilyn.Avila@ncleg.net>,

Representative William A. Current, Sr. <Bill.Current@ncleg.net>,

Senator Fletcher L. Hartsell, Jr. <Fletcher.Hartsell@ncleg.net>,

Senator Tommy Tucker <Tommy.Tucker@ncleg.net>

Dear Representatives:

As a constituent, I am asking you to reconsider the move forward with the current HB 916 until there is a restoration of Independent Case Management, establishment of a third party unbiased binding conflict resolution entity and an unbiased SIS evaluator not employed directly by the MCO. There are more issues that are relevant to this Waiver that are concerns to families like mine as well. Habilitative services is needed to ensure individuals the ability to provide some independent level of care if not complete independence, later on. Enhanced Personal Care is also imperative to families that have children with more involved personal care needs involving GI problems, medication administration, and intense behavior supports to name a few. Eliminating these services will create a bias against these more involved children as staff will not work and pick up cases that require much more effort and unpleasant things to deal with when there is no incentive to do so. The necessity of CAP services to enable families to function and allow siblings to have some normalcy, is imperative to allow for a system that is not burdened down the road with institutionalized adults and broken families. Lastly, appropriate CAP level services in place provides the support families need to just be a family. I will close with a personal example of how these services are needed to just allow families to deal with every day things that happen in all our lives, but can become a crisis without support from CAP:

CAP services are imperative for families like mine. We have more than one child with special needs, but only one with CAP. When my husband's father just recently passed away, we would have been in a tailspin without our CAP workers. One of us would have had to miss all the planning, viewing, hanging out grieving with family and seeing family members that live out of State who we hadn't seen in many years, if it weren't for the supports we had. My son could not handle all the noise, chaos and environment of funeral planning and the viewing. His CAP workers and I brainstormed how to help him handle the loss of his grandfather and explain this to him. We came up with a wonderful concrete picture that he grasped. The CAP workers kept him with them at home while we traveled to another town in NC. They continued his programs/routine as we went about the various duties and family commitments involved in this type of loss. We decided it was best for him to not attend the viewing as it might confuse him. We explained to him that he would go to a "Funeral" and it was a place we would say goodbye to Grandpa and see his casket, which was a "car" that you ride to heaven in and we wouldn't see him again till we moved there too. He then came to the funeral with his CAP worker and she was able to keep him quiet and help him participate in this aspect of it all. She did various sensory strategies to keep him sitting still and attending, bringing along little hand toys, sensory brushes etc. to help him remain there. He did! To our amazement and thankfulness to his 10 year CAP worker who knows him so well, she had just the right strategies to enable him to do this. We all stood together as the casket was placed into the hurst and we said together "there goes Grandpa in his casket, he's riding to heaven". He understood. He hasn't asked for Grandpa again which is unusual since he saw him every Sunday and looked forward to his "tickles" and cuddling in the rocking chair. So we know he got it and is at peace with it. We are so thankful for our CAP workers and how they rallied behind our family and provided the supports that were necessary to enable us to spend long days with family, grieve and have this time together with extended family.

That is just one example of what CAP does for families like mine and that's not addressing all they have done habilitatively for my son, which I could also write personal examples of such as his ability to now toilet, feed and bath independently - we are so thankful for CAP.

Thank you for your continued commitment to do what is right and to forge a plan that makes sense for our voiceless children caught up in fiscal difficulties that are not their faults and should not balanced on their already burdened backs.

Respectfully,

Colleen

NORTH CAROLINA HOUSE OF REPRESENTATIVES
COMMITTEE MEETING NOTICE
AND 2011-2012 SESSION

You are hereby notified that the Committee on Health and Human Services will meet as follows:

DAY & DATE: Thursday, May 31, 2012
TIME: 10 :00 am
LOCATION: 1228 LB
COMMENTS: Bills TBA

Respectfully,
Representative Current, Chair
Representative Dollar, Chair
Representative Hollo, Chair

I hereby certify this notice was filed by the committee assistant at the following offices at 11 AM o’clock on May 24, 2011.

Principal Clerk
Reading Clerk – House Chamber

Wendy Miller (Committee Assistant)

23 May 2012

email to Pat McCrory & Twitter

As we all should, I prefer to be an educated voter and have a good understanding of not only the issues at hand, but the political positions on those issues that matter most. So I'm following lots of folks these days and Twitter, as annoying as it is, comes in handy.

As a parent of a child with profound Developmental Disabilities and Medicaid / CAP recipient, it goes without saying that I am very interested in candidate positions on DD / Medicaid / DHHS matters that will impact Isabel, our family & lots of special peeps across the state - as I'm sure most special parents, providers, and direct-care-staff staff are.

If you Tweet, feel free to follow me as that'll pretty much be my focus 'til the end of this thing - with maybe an occasional coffee picture thrown in, only because to my knowledge caffeine does not come in an IV drip yet.

*Please note: re-Tweets and Follows are not necessarily endorsements, but they could be?

Email to Pat McCrory,

Candidate for NC Lt. Governor

Pat McCrory (@PatMcCroryNC) has sent you a direct message on Twitter!

Crystal J. De la Cruz Tue, May 22, 2012 at 2:06 AM

To: info@patmccrory.com, media@patmccrory.com, volunteer@patmccrory.com, rdiaz@patmccrory.com

Dear Mr. McCrory,

I, along with many parents and family members across the State, would eagerly welcome a dialogue and are very interested in your position regarding the new state-wide Medicaid 1915(b)(c) Waiver reform and the vital impact the service cuts will have on Developmentally Disabled citizens and families.

Many of the members of the North Carolina General Assembly who sincerely wish to assure that the ~~welling~~ wellbeing of our most fragile of populations receive the proper supports and protections, despite their best efforts, are not receiving the most complete information from all stakeholders necessary to make the best possible decisions for all involved. True, it is not an easy system to understand, even for those who live and work in it. --All the more reason that after so many proven failures, we slow this train down, get it right, and make certain that we arrive at the destination intended. --All the more reason that those who will be most affected by these decisions and changes - the innocent and vulnerable developmentally disabled children and their overwhelmed and exhausted families - have a voice and that voice be heard.

Currently, our voice is NOT being heard.

Currently, there are no appropriate appeal procedures in place for families regarding the care of their special loved ones and the hope of fail-safe due process protections are in dire jeopardy.

For your review, I have attached the letter and enclosures previously sent to Governor Beverly Perdue and members of the General Assembly earlier this year. To the best I can confirm, it was never personally read by our Governor. From the 170 members of the House and Senate, I received 5 responses to my initial mail.

I look forward to hearing more on your position and invite you to please contact me at any time.

Thank you in advance for your time an attention on behalf of my daughter, Isabel, my family, and the thousands of special populations across the State of North Carolina and the families who love them.

Sincere regards,

Crystal J. De la Cruz - Hopper

Mother, Advocate & Concerned Citizen

[Phone] Office

http://no2nchb916.blogspot.com/

--Hubert H. Humphrey

---------- Forwarded message ----------

From: Twitter

Date: Tue, May 22, 2012 at 12:36 AM

Subject: Pat McCrory (@PatMcCroryNC) has sent you a direct message on Twitter!

To: Crystal J. De la Cruz

Thanks for the follow. I look forward to the conversation. Hope you will sign up on my website: patmccrory.com.

Direct message sent by Pat McCrory (@PatMcCroryNC) to you (@delacruzhopper) on May 21, 11:36 PM.

PatMcCroryNC
Pat McCrory


	Send a message to @PatMcCroryNC

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NC House Bill 916 is NOT the Answer!

Pages & Links

31 May 2012

What's New in May?

May 2012 events and updates.

30 May 2012

NCGA HHS 5/31 Meeting & Bills

NC DHHS DMA CAP I/DD Public Comments Dox

29 May 2012

Legislative Correspondence from a Provider

Legislative Correspondence

from a Provider Perspective

Medicaid per diem Reimbursement Rates for State DD Facilities

24 May 2012

response from Representative Cotham & reply

from Arc NC: What is Managed Care & Why It's Not a Good Fit

What is Managed Care &

Why It's Not a Good Fit

Parent Perspective: Voice from the Rally

email to Rep. Tricia Cotham

Parent Legislative Correpondence

Legislative Correspondence

from another Parent Perspective

Parent Legislative Correspondence

Legislative Correspondence

from another Parent Perspective

Legislative Correspondence

from another Parent Perspective

NC House Committee Meeting Notice 5/31

NORTH CAROLINA HOUSE OF REPRESENTATIVES
COMMITTEE MEETING NOTICE
AND 2011-2012 SESSION

23 May 2012

email to Pat McCrory & Twitter

Email to Pat McCrory,

Candidate for NC Lt. Governor

Pages & Links

31 May 2012

May 2012 events and updates.

30 May 2012

29 May 2012

Legislative Correspondence

from a Provider Perspective

24 May 2012

What is Managed Care &

Why It's Not a Good Fit

Legislative Correspondence from another Parent Perspective

Legislative Correspondence from another Parent Perspective

Legislative Correspondence

from another Parent Perspective

NORTH CAROLINA HOUSE OF REPRESENTATIVESCOMMITTEE MEETING NOTICEAND 2011-2012 SESSION

23 May 2012

Email to Pat McCrory,

Candidate for NC Lt. Governor

Legislative Correspondence

from another Parent Perspective

Legislative Correspondence

from another Parent Perspective

NORTH CAROLINA HOUSE OF REPRESENTATIVES
COMMITTEE MEETING NOTICE
AND 2011-2012 SESSION