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.
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
Fri, May 11, 2012 at 2:08 PM
To: Govornor Beverly Perdue <governor.office@nc.gov>,
Deputy Commissioner Jamie Kendall <jamie.kendall@acf.hhs.gov>,
Connie Martin <connie.martin@cms.hhs.gov>,
Governor, Heads of DD Departments, Committee Members, House Speaker, Legislative Members:
I respectfully submit to you to look into this issue and seek to get real numbers on the "success" of this Pilot Program with a look into the various lawsuits connected to PBH regarding the change to Innovations Waiver 916 and the misuse, arrogant "above the law" responses to the lawsuit, even being held in "contempt of court" at one point! Some revealing excerpts from BlueCross below:
"However, Medicaid appeals from adverse actions made by PBH account for more than 50% of our cases. More important is the fact that PBH does not choose to meaningfully participate in OAH-sponsored mediation, thus requiring every appeal to proceed to hearing".
"It is our experience that PBH has adopted an interpretation of federal Medicaid regulations that deprive recipients of any right to maintenance of services pending appeal. This interpretation saved PBH money and also served to pressure recipients to accept a lower level of services."
North Carolina Constituents don't want it and they will be VOTING in November! This is not fiscal responsibility - it is smoke and mirrors appearing to make it seem like a cost savings. I entrust you to get to the truth of this matter as elected representatives for NC's most innocent members of our society and their families.
From: COLLEEN
Fri, May 11, 2012 at 12:12 PM
To: "Patricia Porter (Mental Health)" <Patricia.Porter@ncleg.net>
Cc: "Rep. Nelson Dollar" <Nelson.Dollar@ncleg.net>,
"Candace Slate (Rep. Dollar)" <dollarla@ncleg.net>
Mrs. Porter,
I do appreciate your response and the time it took to formulate it. However, I advocate heavily for my child and this Population and I have educated myself on the very issues you speak to regarding the current transition.
My "anxiety" is over a failed PBH model that the State continues to press forward with (there are currently lawsuits pending due to concerns I sited in my previous e-mail to you, which demonstrate it's failure see.... http://www.salisburypost.com/News/041112-PBH-court-ruling-qcd). So I'm not sure how the determination was made regarding the "quality, access and consumer satisfaction"! I would like to know where I can publicly view this plethora of "data" you refer to as it should be made part of public record from these "internal and external sources" to support the forward movement with this Innovations Waiver, as my tax dollars are paying the salaries of those who are supporting it's forward motion and should be considered when voting next election.
Cost effectiveness regarding Targeted Case Management that is currently executed by a single person, will now be replaced by two people (a Community Guide and Care Coordinator and really a third, if you consider the extra workload to QP's to write short term goals). While Advocacy isn't the right word for what a Case Manager does - it is more mediative. They know the rules concerning the CAP Waiver Program and they have direct contact with the Recipient and their families. They are able to balance the needs with the rules, without being directly employed by the State creating more objectivity and fairness in their assessments. Their financial incentives are not driven by the cost savings. My concern is not with the "delivery" of services but rather with the MCO being the same entity to decide how much services your child gets while at the same time, having financial incentive to decrease those same services! Currently, you have a middle person who sees both sides and helps mediates what is fair - I see this elimination and replacement with MCO as a tremendous conflict of interest! Concerning the Community Guides - many of the TCM's will not even take these jobs as the educational requirements are only high school diploma which directly affects the pay scale (and reimbursement rates). So the "transitioning to Community Guides" is not happening as you suggest. Meanwhile, new MCO employees are making tremendous salaries and building new facilities to house themselves as well as taking employees from local Agencies delivering services because they can't compete with the offers being made to these new MCO employees. That doesn't sound like fiscal responsibility to me.
After the initial Alliance meeting this week, there were more questions that were answered with "we aren't sure at this time" or "that hasn't been decided yet" or "we don't know" then there were actual solutions and thought out consequences to changes. It appeared to those in attendance, that many details have not been well thought out and the consequences for that failure to communicate with both the Recipient Families and the Agencies Serving them (which is who the DHHS/Legislature should be gathering their information from concerning what works and what the needs are), is going to be on the backs of the families who struggle already.
There are no current answers being communicated to families, concerning whether a child will continue to have habilitative services and enhanced personal care for those with intense personal/self help, daily living needs. Enhanced Personal Care or it's equivalent is imperative to families with intense personal care needs. I have previously addressed this when the last version of the CAP Waiver was attempting to remove it then. There are serious consequences to families without that distinction between PC and EPC.
The new SNAP "replacement" called SIS that is being done by the MCO appointed "MD or Psychologist" for families is "clinical" in nature - this is not person centered at all, hinging service level determinations on inadequate information at best. While I do agree that there are instances where families are over served and under served (I waited 6 years to receive CAP) - I think the best way to curtail some of that is to go directly to both the TCM's and Agencies that service Recipients! They know who is taking advantage of the system - document and act accordingly to abuses found. Families like mine who have ambitious home programs that they work very hard at to habilitate their child and give them the most skills possible and best shot at quality of life, should not be penalized by these families not doing their part. Trying to come up with some sort of "obamanomics" for equal distribution of services is neither fair or helpful and will dramatically increase your costs in institutionalization of children as families succumb to the pressures without adequate supports. There are factors beyond what is seen that should be considered in the mix for service level determinations. For instance, we have a second child with special needs that doesn't have CAP but requires tremendous effort to assist daily. Those factors should be considered as well, when determining services. There are families I know that have cancer or other debilitating illnesses and they rely on CAP to allow their child to remain home, without the proper levels of care, they would succumb to institutionalization and that will DEFINITELY increase the States Costs and are very real unintended consequences to these changes.
Respectfully,
Colleen
On May 3, 2012, at 6:52 PM, Patricia Porter (Mental Health) wrote:
Hello Ms. [last name redacted],
Representative Dollar has asked that I respond to your message to him regarding the CAP Waiver Program.
I understand the your son receives services currently funded through the CAP-MR/DD Medicaid Waiver and you are pleased with those services as well as the agency providing your case management. You have concerns that as the state transitions to the Innovations Waiver that will be operated under the Medicaid B-C Managed Care waiver that his services may be in jeopardy. In addition you believe that the model may increase costs and that there may be a problem with the same agency providing service as is authorizing those services.
First let me say that I understand the anxiety that comes with this kind of transition. Many families who have children with disabilities have struggled long and hard to get the services their children need provided by people they trust. There is no doubt, however, that the MH-DD-SA system that we have had for the past 11 years could not continue to operate as it has.
Long waiting lists, unqualified and unreliable providers, no fair or equitable way to allocate resources and precious service money wasted just could not be sustained, especially in this fiscal environment. The General Assembly in partnership with the state agency determined that we must convert to an operation that is efficient, with highest quality service providers and with services provided according to the actual needs and preferences of the individual and his/her family. While it sounds like your services were just right for your child, there are many thousands of people who went underserved or unserved in our state while some received services that could not be justified by their need. Because we have not had an increase in CAP slots for the past 4 years, many families received Case Management and nothing else… literally having someone call them up periodically to see how they are doing but to report that there was no money to pay for the actual services they needed. Those families reported that they would gladly forgo the monthly calls in order to have the money supporting those calls go to actual services.
The state was fortunate to have a model of managed care unlike any other in the country in PBH. This pilot project has operated successfully for 7 years on behalf of MH-DD and Services. There were plenty of data available on costs, quality, access, consumer satisfaction both from internal and external sources and the decision to move to this model that was actually made by the state some 4 years ago was actually implemented this year. The model will be expanded statewide. The General Assembly wanted to maintain our system as a governmental operation with all of the control and oversight that implies rather than moving to full privatization and handing the MH-DD-SA system to a for-profit private company. This was particularly important for service management for people with intellectual and other developmental disabilities.
You expressed concern that the same agency providing services is the same agency authorizing those services. The LMEs will not be providing services at all, they will be contracting with the same agencies that are currently delivering services if those agencies meet the quality standards. They will be authorizing services using a standardized, equitable approach that will address the needs of each individual. Targeted Case Management, which in the past included assessment, service plan development, referral to services and monitoring of those services is no longer allowed by Medicaid. Rather, the LMEs will provide care coordination to cover all of these activities. You will notice that advocacy and community navigation is not included in the service definition for Targeted Case Management. This was viewed as so valuable by consumers and families that a new service will be offered called “Community Guide” and will be available to all families who wish to have it. Many agencies that once provided Targeted Case Management have transitioned to providing Community Guide Services as well as a number of other DD services. Services are contracted by the LME and provided by the private sector.
Data review demonstrates that Targeted Case Management did not reduce costs and to my knowledge, this model of managed care has not been operated anywhere else and costs were not increased in our own in-state experience. The General Assembly wisely made sure that there are special provisions in state law to protect the interests of people with DD and their families within this new system. The new system comes with clear expectations, continuous monitoring and review, safeguards to assure cost controls and, most importantly, quality and consumer satisfaction. Surely there will be some costs as the LMEs consolidate and take on a new operational models with new employees needed with specific skills. This was planned for and expected and the new model will still result in significant administrative cost savings. These cost savings will not be at the expense of service quality or access. The essential goal, and one that will be closely monitored is that those individuals who are eligible for services receive the services they need, no more and no less.
The state has made the decision to move to statewide expansion of the B-C Managed Care Waiver. Be assured that the General Assembly remains vigilant to assure that the high goals planned for this system are achieved. Your perception is very valuable and your input always welcomed.
I hope this information is useful to you. Please let me know if I can help further.
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
From: COLLEEN
Sent: Tuesday, May 01, 2012 08:22 AM
To: Rep. Nelson Dollar
Subject: Medicaid CAP Waiver Program
Representative Dollar:
As a constituent and parent of a CAP Waiver child with developmental disabilities, I have some grave concerns regarding the direction that the NC Legislature is being guided to "more cost effectively" deliver services to recipients like my son, via a Managed Care model. This has been done in the past with unsatisfactory and increased cost results. It is also a very questionable idea to have the same entity that is providing services be the one writing CNR's to "advocate" FOR those same services, when there is an obvious financial incentive to keep costs low and deny or reduce those same services to the very recipient they are "advocating" for! I see a huge conflict of interest in this model with the discontinuation of Targeted Case Management, specifically. There is a proven model of privatization and healthy competition that results in superior delivery of services and reduced cost. This looks like "big government" to me and upon further research, I am disgusted to see the amount of money that is being spent to "transition" to this previously failed model and know of employees that have left case management type positions to make significantly more money working for the MCO. This is not "cost effective" and seems like a recipe for corruption and greed. I'm also aware of several lawsuits pending in other Counties where this very thing I am concerned about, is happening to families!
I would like to know what you are doing to advocate for your constituents that are dealing with children that have developmental disabilities such as mine, to ensure this is not going to be a disaster for our family. Specifically, I would like to see you advocate against this change to the new Waiver, especially, regarding the loss of targeted case management - our main advocate and mediator between the State and Families. My votes will be going toward the legislative representatives that are most closely representing the needs of our families. We have enormous struggles on a daily basis and don't need the added stress of law makers who don't understand these struggles and make laws or changes, that increase those burdens and decrease our supports.
I have been extremely blessed by the current Waiver we are under and the advocacy skills of my current Case Manager and the delivery services of my Agency - A Small Miracle Inc.. These services are vital to my families ability to not only function with our other children, but also for my son to make significant progress and have quality of life.
Respectfully,
Colleen
