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December 2018 - Highlights and Hot Topics




A Message from NCCDD Chair Alex McArthur

Alex McArthurNCCDD Chairperson Alex McArthur

It is with great excitement the North Carolina Council on Developmental Disabilities (NCCDD) prepares to step over the threshold into 2019!

We begin the year with knowledgeable and driven Governor-appointed Council members that help in leading NCCDD’s statewide advocacy efforts and systems change. Four additional Council members were appointed in 2018: Dawn Allen, Kristy Locklear, Allison Dodson and Ryan Rotundo. You will be meeting our newest Council members in the coming months right here in Highlights & Hot Topics.

This new year also brings us into year three of our Five-Year State Plan which continues to address increasing financial security and asset development, community living and increased advocacy for people with intellectual and other developmental disabilities (I/DD) throughout the state of North Carolina. We currently fund various initiatives that help us reach the plan’s goals.

Our new year will also bring about new leadership as we are in the midst of searching for and preparing to interview candidates to fill the position of Executive Director of NCCDD. We are confident we will find the right leader to take our Council in the strong direction we have set for the state of North Carolina. We will continue to accept applications for the position until Dec. 27, 2018.

As we wrap up a very successful 2018, I want to say thank you to our members, to the NCCDD office staff, and to all of you who hold our mission close to your heart. Thank you for your advocacy work throughout the state of North Carolina! Happy New Year!

Alex McArthur       

Public Policy Update


Voter ID - One of the constitutional amendments that passed in the recent elections was the voter ID amendment which read, “Voters offering to vote in person shall present photographic identification before voting. The General Assembly shall enact general laws governing the requirements of such photographic identification, which may include exceptions.” The legislature convened in November to develop legislation related to voter ID. A voter ID bill (S 824) was passed. The Governor vetoed the bill; however, the veto was overridden in the Senate and overridden in the House. There was extensive work done to alleviate some of the concerns about effects of this bill on people with I/DD. There are multiple ways to obtain free IDs including the DMV and County Board of Elections. There is also a provision to ensure people have access to a Birth Certificate through the Register of Deeds that is free of charge.

If a registered voter shows up to vote without a photo ID and can demonstrate that there is a ‘reasonable impediment’ to obtaining a photo ID, that person can fill out a ‘Reasonable Impediment Declaration Form” and will be allowed to cast a provisional ballot. Reasonable impediments include lack of transportation, disability or illness, lack of birth certificate, work schedule and family responsibilities. The County Board of Elections will review these exceptions.

There is a need now to educate people about the new requirements. NCCDD will work with its partners to develop and distribute information about this new law.

General Assembly - The new year will see the start of the long session of the legislature. During this session, the budget for the next two years will be approved. The North Carolina General Assembly will convene for its long session on January 9, 2019. This will be an organizational day to elect legislative leaders, and the speaker of the House of Representatives and the president pro tempore of the Senate may appoint chairs and members of standing committees, among other household business. The General Assembly will then return Jan. 23 to begin work in earnest and take up new legislation.


Medicaid Transformation - We are in a ‘quiet period’ with the Department of Health and Human Services (DHHS) as they review the proposals which were submitted for operation of the Standard Plan. The contracts will be awarded in February 2019. The following is the timeline after awards are made:

  • Summer 2019. Prepaid Health Plans (PHPs) must have contracted with enough care providers for their network to meet DHHS standards.
  • July 2019. PHPs must have all call centers operational and all relevant staff located in North Carolina.
  • July-September 2019. Managed care will start in two phases. For regions of the state in Phase 1, this will be the window in which beneficiaries select a PHP.
  • November 2019. The Medicaid managed care program will launch in regions in Phase 1.
  • October-December 2019. For regions of the state in Phase 2, this will be the window in which beneficiaries select a PHP.
  • February 2020. The Medicaid managed care program will launch in regions in Phase 2.

As a reminder, individuals with I/DD who receive supports through Innovations Waiver or state funds, as well as people on the Registry of Unmet Needs, will be in the Tailored Plan, which will not be implemented until at least a year following the Standard Plan. Services include: behavioral health, physical health, I/DD services, TBI services, Long Term Supports and Services, and pharmacy. The plan also includes a specialized health home model to ensure strong care management for people in Tailored Plans.

Autism Services – The Research-Based Intensive-Behavioral Health Treatment definition was approved by the Centers for Medicare & Medicaid Services (CMS). This allows for Medicaid eligible children (birth – 21) diagnosed with autism spectrum disorder (ASD) to receive services that treat or address ASD. The state Medicaid policy related to this definition is expected to be posted for public comment in the next few weeks.


Supplemental Nutrition Assistance Program Reauthorized
On December 10, the House and Senate conferees released a bipartisan Conference Report on the Agriculture Improvement Act of 2018 (H.R. 2; often referred to as the "Farm Bill"), to reauthorize U.S. farm policies and programs as well as the Supplemental Nutrition Assistance Program (SNAP, also known as food stamps). The bill, which rejected cuts previously proposed by the House, was passed in the Senate by a vote of 87-13 and in the House by a vote of 369-47. Learn more about the importance of SNAP for people with disabilities here.

Money Follows the Person​​
On December 11, the House passed the Improving Medicaid Programs and Opportunities for Eligible Beneficiaries (IMPROVE) Act (H.R.7217) by a vote of 400-11. This bill includes reauthorization of the Money Follows the Person (MFP) program for three months. MFP provides grants to states to transition people from institutions to community-based settings. According to a report from the U.S. Department of Health and Human Services, this program has helped over 63,000 people transition into the community and has saved Medicare and Medicaid almost $1 billion as of 2013. You can find additional information about North Carolina’s specific program here. Additionally, the IMPROVE Act extends Medicaid's spousal impoverishment protections for Home and Community Based Services beneficiaries for three months. The spousal impoverishment protection allows the spouse of a Medicaid Long Term Services and Supports (LTSS) beneficiary to maintain a modest amount of income and resources for food, rent and medication. The next step: Senate must pass this legislation before Congress adjourns for the year.

The Senate put similar language in its continuing resolution to fund the government through February 8. All eyes are on the House and President to see if similar legislations is passed and passes signed by the President.

The Affordable Care Act
On December 14, Federal District Court Judge Reed C. O’Connor ruled that the Affordable Care Act (ACA) is unconstitutional as a result of specific provisions in the Tax Cuts and Jobs Act. The ruling further argued that the entire law was invalid because the provision requiring people to purchase health insurance was unconstitutional. While the decision is likely to be appealed, the law remains in place as the case makes its way through the lengthy judicial process. If the Court’s decision is upheld, its estimated that more than 17 million people would lose health insurance. Many of the law's most popular provisions would end: protections for people with pre-existing conditions, allowing parents to cover their children until age 26, eliminating annual and lifetime limits on coverage, and other provisions.

Budget and Appropriations Deadline
Congress has until midnight on Friday, December 21 to wrap up seven of the 12 outstanding appropriations bills in order to avoid a partial government shutdown. Funding could lapse for the Departments of Justice, Housing and Urban Development, Transportation, and others if a deal is not reached to fund these agencies. If a deal is not reached, affected agencies would develop their own plans detailing which government activities are put on hold and which employees are considered "essential" to continue working.

The Senate has continuing resolution language, funding through February 8, in place. The House is expected to take up the issue, however the President has indicated the possibility of vetoing a funding package that does not include border wall funding.

North Carolina’s 9th Congressional District
On January 11, the North Carolina state board of elections will have a hearing on allegations of election fraud centered in Bladen County. The board of elections can opt to certify the current election results or hold a new election. Some people have speculated about holding a new primary election. After North Carolina certifies a determination, the Speaker of the House in Washington D.C. also has the power to seat or not seat the winner. Until this issue is resolved, residents of the 9th district may contact their Senate offices for constituent support.

Remembering President Bush’s Legacy
This month President George H.W. Bush died at the age of 94. Several news agencies shined a light on his legacy as a champion for disability rights when he signed the Americans with Disabilities Act (ADA) into law. Joe Shapiro, author of No Pity and journalist frequently covering disability issues shared his thoughts. Robin Troutman, Deputy Director of Operations for the National Association of Councils on Developmental Disabilities (NACDD) also shared her thoughts on the passing of President Bush.


Natural Support Network Development Initiative’s Community Conversations

goldsboro event This year, NCCDD launched a Natural Support Network Development initiative designed to help people with intellectual and developmental disabilities (I/DD) increase their community connections, including non-paid supports, and better understand how natural supports occur in the life of an individual with I/DD. To garner interest in the online training for this initiative, FIRST, the contractor, hosted two Community Conversations in Black Mountain and Goldsboro in November.

Approximately 25 people participated in the Black Mountain event on November 14; and about 12 people, including NCCDD member Aldea LaParr and Systems Change Manager Philip Woodward, came together on Nov. 16 at the O’Berry Neuro-Medical Treatment Center in Goldsboro. At each event, attendees created a Community Asset Map outlining the contributions individuals bring to their community and local associations, businesses and service providers that can foster greater community engagement.

Marketed as the Full Circle Capacity Building Initiative with support from Rebecca Pauls at the Planned Lifetime Advocacy Network (PLAN), this initiative aims to provide opportunities for 25 professionals or family members to each pair with an individual living with I/DD to take a training together that will strengthen their understanding of natural support networks. These 25 professionals or family members will become Network Facilitators who will then be able to replicate what they learn and help even more individuals in their communities grow their natural support networks.


International Day of Persons with Disabilities Celebration

logo of international day of persons with disabilitiesMonday, December 3, 2018 was International Day of Persons with Disabilities, a United Nations observance. This year’s theme was “Empowering persons with disabilities and ensuring inclusiveness and equality.”

To mark the occasion, Arts Access hosted a celebration at the Raleigh Little Theatre that day and invited community partners to enjoy pizza and cake together and share their thoughts on disability, advocacy or making the community more inclusive. Approximately 25 people participated in the celebration, including NCCDD Systems Change Manager Philip Woodward, Community Accessibility Specialist Martina Moore-Reid of the NC Division of Services for the Deaf and the Hard of Hearing (DSDHH), staff from the NC Museum of Art and the NC Museum of History and individuals with I/DD who participate in programs at Wake Enterprises.

Philip Woodward shared some international disability statistics, saying the World Bank estimated that one billion people, or 15 percent of the world’s population, experience some form of disability, and between 110 and 190 million people experience significant disabilities.

Whitney Watson, Exhibit Designer at the NC Museum of History, said his desire for improved access to the museum is motivated by his personal experience of disability from both ends of his family: a son with autism and a father severely impacted by dementia. He remarked that both of them should be able to visit the museum and have an experience that rewards them for coming. Martina Moore-Reid, who grew up as a Deaf/Hard of Hearing person, fostered the conversation about high expectations for people with disabilities by telling the group that parents of children with disabilities provide the best feedback and that one doctor’s opinion on how to raise a child with a disability is not enough.

Learn more about International Day of Persons with Disabilities.


Council Member Spotlight: Allison Sawicki Dodson

Allison Sawicki Dodson hails from Blowing Rock, NC and brings her Appalachian State University background to the North Carolina Council on Developmental Disabilities (NCCDD). Appointed by Governor Roy Cooper to the Council, Dodson works as the Director of Parent & Family Services at the university where she also received her bachelor’s in English and master’s in student affairs.

Allison DodsonAmong all the roles she holds in her work and her community service, the one dearest to her is advocating for her sister Jennifer who was born with tuberous sclerosis. “Being the sibling of a person with disabilities is such a unique experience. The challenges, milestones, and successes are often powerful moments that shape our relationship with our family and our own personal development,” Dodson explains.

Describing her sister, Dodson says, “Jennifer is social and warm, always interested in connecting to people around her. She is tenacious and passionate and isn’t afraid to challenge systems to get her point across. She loves music, M&Ms, hugs, and anything with Oprah Winfrey.” As Dodson looks to the future, she knows Jennifer’s care will be her responsibility one day, so she has started to learn about the systems in place that provide support resources for her sibling. “I want to make sure these supports are both accessible and useful to her for her future,” Dodson adds.

As for her role on the Council, Dodson explains, “I consider myself to be an advocate and ally for many of my fellow community members who find themselves pushed to the fringes of these (systems and support) conversations due to their marginalized identities. As an advocate and ally, I realize the distinct importance of my inherent privilege in these larger conversations. I also recognize that my role is not necessarily to speak ​for ​these individuals, but to speak ​up ​to do all I can in creating space for these conversations to happen in an equitable and authentic arena.”

Dodson was previously involved in the leadership and development of the ​NC Sibs network​. The network was a funded initiative by the NCCDD, and she experienced first-hand the impact of the grant’s support on outreach and engagement to siblings of people with disabilities in North Carolina.

“I think the Council is doing incredible work in empowering self-advocacy and community building. They are supporting and investing in programs that have a tangible impact on the overall quality of life of people with intellectual and developmental disabilities (I/DD) and in strengthening supports within their communities. I believe the Council is committed to developing tools and resources that help people with I/DD be their own agents of change,” Dodson says.

In addition to the Council and NC Sibs, Dodson is involved with Parent to Parent of High County and the Association of Higher Education Parent & Family Program Professionals. She and her husband have a nine-month-old daughter.


Happy Holidays from NCCDD!

NCCDD Happy Holiday 2018


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