The Arc of North Carolina's response to DHHS' Managed Care Proposal

Posted by The Arc of North Carolina

(September 8, 2017) Today, The Arc of North Carolina issued a letter to Secretary Mandy Cohen, regarding the release of the proposed program design for Managed Care from the North Carolina Department of Health and Human Services (NC DHHS). Click to read the letter in its entirity.

Madame Secretary Mandy Cohen

NC Department of Health and Human Services
2001 Mail Service Center
Raleigh, NC 27699-2001

Dear Madame Secretary Cohen,

The Arc of North Carolina’s over 60 year history informs our advocacy and service delivery expertise in a unified effort to ensure that individuals with intellectual and developmental disabilities (I/DD) can live, learn, work and play in communities of their choosing.  Similarly our network of chapters, families, self advocates and board see the on-the-ground effects of programs, policies, and personnel. Finally, our Managed Care Principles approved by our board and informed by our network, and our leadership in the I/DD Medical Health Home Initiative guides much of our response.

Thank you for the opportunity to comment on North Carolina’s ongoing effort toward Medicaid Managed Care. We appreciate the continued area of focus on true integrated, whole-person care, emphasis on outcomes, streamlined processes for providers, improved data collection and analysis, as well as the recognition of the key role social determinants of health play for all populations, including individuals with intellectual and developmental disabilities.  A comprehensive approach – down to payment and evaluation systems based on outcomes and not check boxes or 15-minute increments – is something professionals have long advocated for.  In truth, it’s about people, and not compliance.

To best serve individuals with I/DD and truly achieve the updated goals and outcomes in the proposed plan, it’s critically important to remember that 1. Individuals with I/DD experience lifelong disability.  Efficacious programs and services recognize this population’s unique needs, challenges and strengths.  Programs designed only for the general population or those with other health or behavioral needs have proven time and again to be less effective and sometimes harmful for individuals with I/DD.  2. Individuals with I/DD require ongoing, tailored habilitative supports to achieve and maintain skills, and 3. Although medical necessity criteria is used to qualify for services, a medical model approach to service delivery is solidly outside of established best practice.  As a growing number of entities apply to become standard and tailored prepaid health plans (PHP)– engaging in health care and/or service delivery – these entities will need clear guidelines, incentives and oversight informed by I/DD-specific expertise from the Department to be successful.

Without the detail that will emerge from forthcoming legislation and the Department’s upcoming concept paper and subsequent correspondence with the Centers for Medicare and Medicaid Services (CMS), it remains difficult to provide a complete response specific to the I/DD populations. In reviewing the managed care proposal, however, we see many promising concepts and goals as well as an aggressive timeline.  While detailed comments regarding major components of the managed care proposal are offered below, we would also like to offer support of “areas of consideration” and express our hope they will become codified:

  • An I/DD Medical Health Home
  • Expanding treatment models to better serve dually diagnosed individuals
  • Improved, cross-sector efforts to identify and respond to social determinants of health
  • Enhanced care management
  • Improved collaboration among providers, social services, health plans, and technology to improve health-related social needs and reduce health inequities.

The above list points to a number of key components for true success within the I/DD community. Informed by our work with the I/DD Medical Health Home Initiative, we strongly suggest care consultation for primary care physicians and care navigation for individuals with I/DD.

Tailored Plans

We know that outcomes for individuals with I/DD are influenced by both health and long term service supports access, continuity, service delivery and cultural competence.  Adequate funding, I/DD specific training and expertise, aligned data collection and analysis, and collaboration among various stakeholders remain critical to success. We have seen where the “bifurcated system” described in the Program Design document has increased barriers between medical and long term services and supports which impacts individual outcomes, families’ capacity to care for their own, individuals’ capacity to develop more independence, as well as medical and service providers’ capacity to provide effective and efficient care. 

Recognizing no other state has implemented a Tailored Plan as described in the Medicaid Managed Care Program Design, North Carolina has little evidence-based efforts to draw from. As the Department, in concert with other stakeholders, begins to further operationalize this new effort, here are a few initial questions and thoughts to consider:

  • -How will the whole-person expertise specific to I/DD be cultivated and developed to benefit individuals with I/DD who are and are not receiving care through Medicaid or state dollars?
  • -Will Advanced Medical Homes outside of Tailored Plans include the expectation, training and evaluation to effectively serve individuals with I/DD in terms of treatment, skilled support, crisis prevention, and habilitation?
  • -How will individuals with I/DD exercise “choice” in plans similar to their nondisabled peers if they are unhappy with the care or services they are receiving?
  • -The current managed care system has effectively contained costs.  How will the new system, with a new focus on outcomes, be operationalized, monitored and evaluated?  What training will be provided to both medical and service delivery agencies to ensure cultural competence, person-centered care, and habilitative focus?  If Tailored Plans are not meeting outcomes of whole person, person-centered habilitative care, how will the new contracts be enforced and provide additional training and support as well corrective action if needed?
  • -How will specialty care that is outside a given service area region remain open to individuals and families (e.g. academic specialty clinics, current physicians, medical specialists etc.)?
  • -Will the state set floor service rates and allow PHP’s to establish rates above those floors as needed?
  • -Many individuals with I/DD have cultivated strong relationships with culturally competent medical groups.  If these practices are considered out-of-network (pg. 51) will these families and individuals be ineligible to continue that relationship after 90 days?
  • -As described, there will be fewer Tailored Plans than general population / standard plans.  This puts additional burden for success with a more complex population.  What measures will be in place to support and evaluate success?  If an entity withdraws as a tailored plan, what notice must they give before withdrawing? How will the state support transition to a new plan?  How will their Medicaid-funded assets be recouped?
  • -Many promising or established practices and partnerships related to I/DD already exist.  How will the state identify and inventory best practices that are currently underway in NC?
  • -The use of telehealth to promote access to care should also address the development of a consultation infrastructure and services to meet the statewide need for access to professionals with I/DD expertise.
  • -Medical practices juggle a myriad of requirements, as well as measures of productivity and health outcomes. Sometimes, these measurements of “success” may clash with the needs of patients with I/DD.  What strategies and safeguards will be in place to help support physicians, incentivize care of individuals with I/DD, and ensure individuals with I/DD receive the care they need?
  • -The proposal estimates that Tailored Plans will be populated by 85,000 people with severe mental illness, substance use disorder or I/DD diagnoses.  This seems like a low number.  Where does this estimate come from?  How many people are currently receiving long-term supports in the LME/MCO managed care system, and how many are on waiting lists who are not receiving needed services?  If the numbers are indeed low, how will that impact the program implementation and success?
  • -Will Tailored Plans be provided by any willing PHP in the state?
  • -Will the entities operating the Tailored Plans be required to accept any willing provider of physical and behavioral health services into their network?
  • -Will behavioral health service providers be required to use the same accrediting organizations selected by the state for PHPs?
  • -We applaud the creation of the ombudsman program and encourage development of case management/navigation services for people with I/DD.  Long-term supports in the managed care environment necessitate case management for people with I/DD, and yet that service is not available.  Some sort of navigation service will be needed more than ever when integrating long-term supports with medical services.  How would care navigation differ from enhanced care management?  And how will enhanced care management support individuals with I/DD who are not represented in tailored plans?


It is critical that the Standard Plan have the capacity, expertise, and expectation to meet the diverse needs of children and adults with I/DD, given the tailored plans will not serve all individuals with I/DD.

Long Term Services and Supports Delivery

We applaud the effort to streamline provider credentialing and other administrative burdens.  This will vastly increase efficiency, reduce duplicative burden, and enhance providers’ abilities to focus on outcomes.  Similarly, we strongly urge the Department to require Prepaid Health Plans (PHPs) to use the same tools, priorities and evaluation to reduced provider burden as well as increase accurate comparisons of outcomes between PHPs.  The proposed 90-day window to submit claims versus the current 60-day window will be helpful.  The Department’s emphasis on education and training (for both medical and service providers) will also be critically important moving forward.  As the state pursues innovation through capitated payments versus fee-for-service models, we encourage extending that capacity to the provider level.  Current antiquated 15-minute billing structures and check box approaches to service delivery often inhibit improved outcomes for the individual and family.  This will become even more important as services providers in residential and day programs begin to implement the new federal Home and Community Based Service standards.

After review of the program design proposal, and based on our ongoing experience with the current LME/MCO service system, we wanted to offer some additional feedback which may be useful moving forward:

  • -We see LME/MCOs limit providers in their networks to specific services and then reach to The Arc and others to fill the gap.  This necessitates a contract amendment, significant personnel time, and potential disruption of service to the individual.  We suggest the State require Prepaid Health Plans (PHPs) to report such contract amendments.  By doing so, the state can monitor the true capacity of these entities.
  • -Grievance procedures are critically important to individuals and families.  Some LME/MCOs have utilized Community Guides/Navigators when reaching out to families and all parties have found that a beneficial support in the process.
  • -Since the advent of LME/MCOs, spend down processes for Medicaid beneficiaries have been inconsistent and time consuming.  With a renewed focus on collaboration, this can be an area of focus in work with the Department of Social Services.
  • -How will the new Innovations Waiver, effective August 1, 2018, be impacted by this transition?  How can we support families, provide detailed, clear information, and help alleviate fears and concerns?
  • -The Department has outlined a delayed entry into this new program for dual eligible recipients.  The Arc currently has 374 dually eligible individuals across our system.  Will there be any changes to how we support these individuals?  How can we offer expertise moving forward for this population?
  • -Some LME/MCOs utilize “Provider Direct” which has an intermediary entity, Emdeon.  This has caused delayed billing, poor communication regarding rejected claims, and delayed payments.  We encourage uniform, transparent billing systems to minimize these unnecessary issues.
  • -To facilitate truly coordinated care for people with I/DD and bridge the gap between long-term supports and medical services, we envision and encourage a uniform electronic health record to be utilized by all parties.

Self- advocates and families

Individuals and families have expressed concern over this proposed transition.  They continue to ask for care navigation and see this as a growing need in a new landscape.  Many families have expressed an ongoing burden in educating medical and care coordination professionals on what their rights and choices are, rather than the paid professionals being the resource.  This certainly puts families and individuals who are new to “the system” or lack the supports to navigate at a disadvantage.  As Tailored Plans seek to bridge the gap between medical and long terms services and supports, training and oversight must be plentiful, ongoing, and monitored to ensure the professionals have the tools they need to meet the needs of individuals.  Additional keys to success:

  • -Developmentally accessible materials including beneficiary education related to health promotion, wellness, and disease prevention, explanation of the Medicaid Managed Care proposal, requests for comment and town hall meetings, and so forth.
  • -Care plans and person-centered goals visible to all care team members
  • -Social determinants of health: link to long term services and supports, including employment, community living, housing, and more
  • -Increased and improved uses of assistive and smart home technology for people with I/DD.
  • -Clear identification of who to communicate with regarding questions, concerns, and follow-up.
  • -Many promising I/DD-specific pilots, cross-stakeholder collaborative and initiatives exist.  We encourage reaching to the I/DD Medical Health Home Initiative throughout this process.
  • -What role will CFAC’s have in the new system?  How can we ensure that momentum and expertise is not lost?
  • -Family support is a necessary component and must be increased and enhanced.
  • -Families and self advocates are concerned about a Medical Model influence to care, delivery and language.  What seems like a small thing to individuals outside the disability community can help or hinder trust, compliance and relationships moving forward.  We strongly encourage training and oversight of these new entities to commit to person-first language, not referring to individuals as “patients,” and culturally competent materials, outreach, and engagement.



Data remains one of the most critical components of the new plan.  How else will we truly evaluate the efficacy of outcome-based efforts? We strongly encourage the Department to implement unified data collection across regional and statewide entities to ensure accurate comparisons between regions and populations.  In addition, The Consortium strongly urges:

  • -Ongoing, timely, and transparent data collection and analysis to inform programmatic improvements, unanticipated trends, and solutions to regional and population-specific needs
  • -The I/DD Community often lacks the data it needs to bridge the gap between what is perceived as anecdotes versus facts. Building a unified data collection system that includes this population from its inception is critical.   South Carolina’s model, as presented at the Practice Improvement Collaborative earlier this year, showed a promising data analysis model.


Transparency and Clarity Moving Forward

Stakeholders are nervous about next steps and want to be up-to-date.  Here are some thoughts our staff and families had moving forward:

-          -Could the Department host a webpage that lists updates in chronological order?

-         - Can efforts be made to include a companion document as we’ve seen with other Waiver efforts designed to improve communication with individuals with I/DD and their families?

Ongoing issues and program stability moving forward

As the State collectively works toward the future, longtime issues persist: significant waitlists for services; inadequate reimbursement rates to hire, train and maintain staff; disparate individual outcomes influenced by geography; individuals and families are getting lost in “system.”  Looking forward, we see increased costs associated with the important goals of HCBS implementation, an increasingly aging population with little transition planning for adults with I/DD living at home, and future system uncertainty leading to a loss of expertise as professionals transition.  Whatever the future holds for Medicaid Managed Care, these ongoing issues need to be a priority.

The Arc of North Carolina remains committed to representing the needs of individuals with intellectual and developmental disabilities and their families here in North Carolina.  We believe in cross-stakeholder, meaningful solutions, and we are committed to being a resource throughout this process.


John Nash
Executive Director
The Arc of North Carolina