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February 2020 - Highlights and Hot Topics



Letter from the Executive Director

NCCDD Executive Director Talley Wells

What an honor to be the new Executive Director of the North Carolina Council on Developmental Disabilities at this critical moment.

This is the moment when...

  • our voices must be heard,
  • our stories must be told,
  • and we should be learning about and meeting the candidates for NC House and Senate, US House and Senate, Governor and President. 

We need to meet the candidates so that when they make critical decisions on budgets, Medicaid, waiver slots and agency leadership, they know how it impacts people with intellectual and other developmental disabilities (I/DD), families and advocates. 

Candidates for political office are interested in meeting their voters as the November election approaches. This gives all of us opportunities across the state to meet and talk with them.  

Disability Rights North Carolina has started this process with a new 2020 North Carolina Primary Guide. Also, our Council member, Dan Smith, provided a resource about the 2020 Appellate Judicial Candidates.

And, in the next year, critical decisions will be made that will impact North Carolinians with disabilities for years to come. This is the time of Medicaid transformation, of the “Tailored Plan,” and of unprecedented changes in LME/MCOs.  We must be at the table for such important decisions. 

Finally, NCCDD is hitting the road for our own intellectual and other developmental disabilities town halls.  We will be traveling from Craven County to Buncombe County and to many points in between. We want to hear from you, collect your stories and amplify your voice.  Stay tuned for more details.  

It is my honor to serve as the Executive Director for NCCDD and I look forward to working with our members, staff and stakeholders.  2020 is going to be an exciting year!


Public Policy Update as of February 14

Public policy update



In late January, the US Supreme Court upheld the Department of Homeland Security’s updated rule expanding the criteria the government can use to determine visas or long term status of legal immigrants.  Specifically, it widens the definition of a “public charge,” an existing term describing individuals who may utilize government assistance. An applicant’s health status, education and employment levels will now be considered.  In addition, while previously only use of income assistance programs like Supplemental Security Income (SSI) or Temporary Assistance for Needy Families (TANF) could be considered, broader programs like food stamps, Medicaid, Section 8 housing and others will now be part of the review process. These changes will particularly impact poor immigrants and those with health conditions or disabilities. 


On January 30, The Department of Health and Human Services issued guidance, called Healthy Adult Opportunities, to states regarding the Medicaid program.  It offered 1115 Demonstration Waivers as a vehicle to cut and cap state Medicaid health programs in exchange for wide latitude in program changes: eligibility, service array and quantity, prescription drugs, work requirements and more.  Medicaid, established 55 years ago, is a federal-state partnership providing health insurance to those who qualify. States have added optional services, including Home and Community Based Waiver Services (HCBS). 

Currently, states receive a federal match for every dollar spent. North Carolina receives just over $2.00 for every $1.00 it spends. States that opt to participate in either a block grant (lump sum) or per capita cap (funding for each enrolled individual) as outlined in the guidance, would lose that federal match and be solely responsible for cost overruns. While HCBS services are not specifically included in the guidance, they could be vulnerable to counteract state shortfalls.

Trump Administration Budget

President Trump released his fiscal blueprint for fiscal year 2021 on February 10.  Although this budget does not have the force of law, it outlines policy and fiscal priorities held by the administration, including cutting the Medicaid and Affordable Care by over $1 trillion dollars over 10 years, cuts to the Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) programs, 30% cut to Supplemental Nutrition Assistance Program (SNAP) also known as food stamps and more.  Various national stakeholder groups are preparing in-depth analyses at the time of this publication.

Social Security Administration (SSA)

The SSA sought comments through the end of January regarding its proposed rule to expand the use of continuing disability reviews (CDR) for Old Age Survivors and Disability Insurance (OASDI) and Supplemental Security Income (SSI).  It takes years for many beneficiaries to become eligible, and often requires professional expertise. This rule would increase the frequency of certification, likely adding to adjudication wait times and errors.


The Accessible Voting Act (S.3206) was introduced in the Senate on January 16.  Click here for details outlining ways this bill aims to decrease barriers to voting for citizens with disabilities.



The General Assembly convened on Tuesday, January 13 for one day and did not vote on the budget. At this point, the Senate does not have the votes to overturn the Governor’s budget veto. It is unlikely that the budget will be taken up when the legislature returns for the short session. We will most likely be waiting until after the November elections for movement on the budget. The key areas of contention remain the same – Medicaid expansion, education funding and tax cuts for businesses. As discussed previously, the budget contained funds necessary for the Medicaid transformation that had been planned to start in February.

Medicaid Transformation Update

Suspension of Medicaid Managed Care is still in effect. The decision to lift the suspension is dependent on legislative actions. Despite the suspension, the Department of Health and Human Services continues its work on policy related to the transformation. There are opportunities for public comment on this work. 

The most recent policy papers issued by DHHS are Behavioral Health I/DD Tailored Plan Request for Applications Pre-Release Policy Paper and Transition of Care Draft Policy 

The Tailored Plan RFA paper covers the processes the LME/MCOs will have to follow to apply to operate the Tailored Plan in their catchment area.  The LME/MCOs are the only entities that can apply for the RFA when it is released. The administrative and financial requirements are outlined, as well as expectations for building their networks for physical health and behavioral health and I/IDD services and supports. Outstanding concerns/questions include: Will rates be robust enough to attract physical health providers?  What type of training and support will physical health providers receive for caring for individuals with intellectual and other developmental disabilities (I/DD) in their practices? How will the state ensure there are I/DD providers who can deliver appropriate services and supports? 

This paper also outlines that the Tailored Plan will be required to have in-reach staff and transition staff to promote movement from ICF-I/DD facilities or state developmental centers to the community. This is a positive step; yet, the success of this will depend on the availability of appropriate services and support in the community.  

The Transition of Care paper sets out requirements for the Prepaid Health Plans (PHPs) to develop ways to ensure transitions in three areas: 1) transition from current system into the managed care system; 2) transition between PHPs; and 3) transition from a Standard Plan PHP to a Tailored Plan PHP. The goal of the DHHS is that the PHPs ensure continuity of care for each member and minimize the burden on providers during the transition. An important part of this paper is found in Appendix B which describes how people with I/DD who are in the Standard Plan, who are eligible for the Tailored Plan, are identified and supported, and transitioned to the Tailored Plan, if appropriate.  

The Department welcomes feedback at Medicaid.Transformation@dhhs.nc.gov 

NC DHHS Town Halls

The NC Division of Mental Health, Developmental Disabilities, and Substance Abuse Services (MH/DD/SAS) is offering a series of Town Hall meetings around the state with Deputy Secretary Kody Kinsley. The Town Hall meetings aim to provide MH/DD/SAS consumers, families, providers and advocates an opportunity to share feedback and experiences about ways to better support consumers and improve our public MH/DD/SAS services delivery. 

Check the NCCDD website for information on upcoming Town Halls.


Census 2020 and You

Every 10 years, the US Constitution requires the United States to count the number of people living in the country.  Why is the census important to people with disabilities?

  1. Census data is used to figure out how much money programs, state, and local governments will get from the Federal Government to pay for certain services.
  2. Census information is also used to figure out how many members each state should have in the US House of Representatives.

The census helps to direct more than $675 billion annually in federal funding. Census data is used by businesses, governments, and civic organizations to inform decision-making about what services should be available in local areas.

Ninety-five percent of American households will receive instructions on how to participate in the census by mid-March. If people do not respond by the end of April, Bureau staff will follow-up in person between May-July. The Bureau will release the census data collected sometime in November 2020.  Click here for a brief synopsis of the 2020 Census process you can listen to or read.


New Chair and Committee Leadership

Kerri Eaker, Talley Wells, Daniel Smith, Allison Dodson, Ryan Rotundo, Nessie Siler and Cheryl Powell(from left, back) - Kerri Eaker, Talley Wells, Daniel Smith, Allison Dodson, Ryan Rotundo, Nessie Siler and Cheryl PowellNCCDD is excited to welcome its new Chair and committee chairs who will lead Council initiatives:

Kerri Eaker, of Asheville, NC, has been appointed as the Chair of NCCDD by Governor Roy Cooper. Eaker is the Family Support Outreach Coordinator for The Family Support Network™ of WNC at Mission Children's Hospital in Asheville, NC. Eaker will preside over NCCDD meetings, serve as Chair of the Executive Committee, and represent the Council to the public and to policymakers among other duties and responsibilities.

NCCDD also announced new chairs for its standing committees:

  • Daniel Smith is a parent of a child with a disability.  He is an attorney with the law firm of Brooks, Pierce, McLendon, Humphrey & Leonard, LLP in Greensboro, NC and will chair NCCDD’s Financial Asset Development Committee. 
  • Ryan Rotundo, of Weaverville, NC, is an Instructor of Exceptional Children (High School Level) for Buncombe County Schools and an entrepreneur in the Asheville, NC area. He will chair the Community Living Committee. He is a sibling advocate for his sister, Nicole, who is diagnosed with Down syndrome. 
  • Cheryl Powell, a self-advocate and a person who is diagnosed with cerebral palsy, will lead the Advocacy Development Committee. 

In addition, Allison Dodson was elected as Secretary to the Council at the annual meeting of the Council in November. Nessie Pruden-Siler was elected as the second Vice-Chair to the Council. 

Council Member Profile: Meet Rhonda Cox

Rhonda Cox SmallVaya Health’s Chief Population Health Officer, Rhonda Cox, has been appointed to NCCDD by Governor Roy Cooper.  Vaya Health supports children and adults with both I/DD and/or mental health and/or substance use who are on Medicaid, have the Innovations Waiver, and are uninsured or underinsured. 

In her position, Cox is responsible for member and provider Servicesservices, mental health, substance use and intellectual and I/DD complex care management, provider network, design and implementation of an integrated care modeling and, as of March 1, utilization management.

Cox believes that individuals with I/DD should have the ability to meaningfully be part of their community of choice, have individual rights of privacy, dignity and respect, free from coercion and restraint.

 “I believe strongly in supporting persons with disabilities having individual autonomy in making life choices, where they live, what they choose to do and with whom they choose to spend their time both personally and with regards to services,” said Cox. “I also want to design a sustainable service and support system that allows these options. That is in no way meant to exclude the roles of guardians or caregivers but rather to provide real choices and opportunities for individuals and their families and build on the great advocacy and work led by so many families and agencies who have this shared goal.”

Cox looks forward to working with the Council to find common ground where Council goals and shared state initiatives could be meaningfully implemented. She points to both the Supported Living initiative and the Rethinking Guardianship: A Person Centered Approach initiative as supporting individuals with more options and choices.

Cox holds a bachelor’s degree in biology and psychology from UNC Chapel Hill and a master’s in psychology from Appalachian State University. A fan of participating in mixed martial arts and trail running, Cox is a resident of Candler, NC.

En Espanol - February 2020

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 Audio - Highlights and Hot Topics




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