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December 2017: Highlights and Hot Topics


A Message from Our Executive Director

Can it really be December… already? Yet, here we are in the holiday season, finishing up important work and planning for what is ahead in 2018! In thinking back over the past year, I am filled with gratitude and humbled by the hard work of this community to educate, advocate and create change. And while we have a great deal of work to do, the accomplishments of 2017 are numerous and it is important to look back and celebrate these efforts.

We welcomed Governor Roy Cooper’s appointment of Alexandra “Alex” Cline McArthur as the new Chairperson to the Council. Governor Cooper also appointed eight new Council members including: Senator Valerie Foushee, William Miller, Aldea LaParr, Katherine Boeck, Brendon Hildreth, Daniel Smith, James Stephenson and Nakima Clark. These new members are excited, energized and are contributing to a strong and diverse Council focused on advancing the rights and overall opportunities for people with I/DD.

Since joining the Council, our new Chairperson Alex McArthur has been hard at work, along with all of our dedicated members and partners, to advance opportunities and choices through systems change efforts. Systems change by the Council often occurs in the form of specific initiatives, but also through our efforts to assess state and federal level policy and to then share information, as well as to educate and advocate regarding the impact of changes. Through all of this, it is our continuing commitment to help inform the specialized long-term services and supports system and, more broadly, all communities across NC.

2017 was Year One of our Five-Year Plan. During the year, we focused on key outcome areas for people with intellectual and other developmental disabilities (I/DD) in the areas of financial asset development, community living and advocacy development. From working to expand competitive, integrated employment and careers for people with I/DD, supporting people living in adult care homes to transition back into the community, to offering support to siblings with brothers and sisters with I/DD, our initiatives are positively impacting numerous lives across the state.

We spent time in our communities. In Charlotte, Boone, Fayetteville and Raleigh, the Council’s Upward to Financial Stability “Train the Trainer” program aimed to increase access to accurate information about asset building programs that are available for people with disabilities, their families and professionals. We enjoyed a very warm and sunny day outside in July at the Sassafras All Children’s Playground, Laurel Hills Community Park in Raleigh. This all-inclusive playground was filled with families and their children, both with disabilities and those who are typically-abled, all playing together. It was a joyful event and celebrated the anniversary of the Americans with Disabilities Act!

Thanks to a great collaboration with NC State Treasurer Dale Folwell, NCCDD had the opportunity to partner for an event at The Enrichment Center in Winston-Salem in April. The event was geared toward promoting the launch of the NC ABLE Program and the availability of ABLE accounts designed to allow individuals with disabilities to save money without jeopardizing their Medicaid and Supplemental Security Income (SSI) benefits.

Just last month, we honored two outstanding award recipients for the work they have done on behalf of people with I/DD. Sherry Paul of High Point, NC received the Jack B. Hefner Memorial Award for her work with athletes involved with Special Olympics of North Carolina. Byron Anthony “Tony” Dalton was honored with the Helen C. “Holly” Riddle Distinguished Service Award for his leadership of the Developmental Disabilities Training Institute (DDTI) at the University of North Carolina for 34 years.

Also, this year we took a strong look at North Carolina’s untapped pool of talent and employment. We launched EveryBody Works NC to help employers seeking qualified candidates for jobs and to help individuals with I/DD who are seeking employment. EveryBody Works NC offered advocates a way to help increase awareness and make connections for talented and skilled individuals with I/DD.

These are just a few highlights, and more information is available in our newly released 2017 Annual Report which is linked below.

As we look ahead to 2018, the three primary goals, along with the objectives in our Five-Year Plan, will continue to guide our efforts to impact communities throughout NC. It is essential we work together! Thank you for being part of the journey and Happy Holidays!

As always, we love hearing from the community about your thoughts, events and even your ideas on what can make your community a more inclusive place for people with I/DD to live, work and play. Contact us here.

Chris Egan
Executive Director

Public Policy Update

State Updates:

Cardinal Innovations Healthcare

The NC Department of Health and Human Services (DHHS) is taking over Cardinal Innovations Healthcare. This take-over process was to course correct for some of the recent actions on salaries and severance packages. The Cardinal board and key leadership were relieved of their duties. Claims processing and executed contracts will continue as planned. DHHS is approving other financial transactions, and the staff met with Cardinal staff to assure them that their work has been and continues to be valuable. The priority was to establish a new board and solidify positions so DHHS can pull out of operations. A new board was named late last week and includes 3 previous board members and 14 new members. Legal issues continue with Cardinal however, and are related to the severance packages. There is an effort by the state to “recover” these dollars – either from Cardinal dollars or directly from the individuals who received the packages.

I2i Center for Integrative Health

Effective Jan. 1, 2018, the NC Council of Community Programs will be renamed i2i Center for Integrative Health. Their mission is to support policymakers through convening policy collaboratives. They are currently bringing its board together, and they have seated seven board members and will add seven more in the coming weeks. The first collaborative will focus on Medicaid reform. You can read more here: http://www.i2icenter.org/


The initial plan submitted in August to the Centers for Medicare & Medicaid Services (CMS) includes creating six regions in the State. Medicaid services will be managed through three statewide commercial plans and up to 12 Provider-Led Entities (although the state would prefer fewer of these). These entities will offer Standard Plans and BH (Behavioral Health), I/DD Tailored Plans. More recently, an amendment was submitted to CMS which proposed several initiatives including tele-medicine, safety net providers and social determinants of health. There is also a more detailed document available related to the Tailored Plans. They will go into effect in year three of the reform. Until then, people with I/DD who are currently receiving services and support through Innovations or state funds will continue to be managed through the LME/MCO system.

Once launched, the Tailored Plans will offer health care management as well as long-term services and supports (LTSS). It will also include more intense care management. Innovations, state-funded services, and intense care management will only be available in the Tailored Plans. We still have questions and comments around populations covered, benefits and care management, which we will be submitting this week.

Federal Policy

Tax Bill

The House and Senate conference committee ironed out key differences between legislation to cut $1.5 trillion dollars in revenue which passed both chambers. While the constellation of cuts within the conferenced tax bill will impact various communities in different ways, the fundamental components can deeply impact the disability community no matter the bill’s specific details. Cutting $1.5 trillion dollars in revenue now will necessitate deep cuts to spending later. Those cuts will be felt not only in discretionary spending like IDEA, vocational rehabilitation and housing, but in mandatory programs like Medicaid and Social Security. The leadership of the House and Senate, as well as many of its members, are openly pointing to cutting Medicaid and Medicare in the new year to reduce spending necessitated by revenue loss. As Highlights and Hot Topics was being prepared, the House and Senate each passed the conferenced legislation, and President Trump is expected to sign the bill into law before the Christmas break. We will continue update you as the impact of this legislation unfolds.

The Children’s Health Insurance Program (CHIP)

The CHIP program, known as Health Choice in North Carolina, needs re-authorization to continue funding health services for low income children. The CHIP program currently provides health and dental services to over 200,000 children across the State. If Congress fails to reauthorize the program, North Carolina’s beneficiaries could experience disruption to coverage as early as the first quarter of 2018. While strong bipartisan support exists for the program, disagreement persists on how to pay for it.

Money Follows the Person

On December 14th, Senators Cantwell (D-WA) and Portman (R-OH) introduced Ensuring Medicaid Provides Opportunities for Widespread Equity, Resources and Care (EMPOWER Care, S.2227) to reauthorize Money Follows the Person, a grant to states designed to transition individuals from institutions to community settings. A US Department of Health and Human Services report notes that this program has helped over 63,000 people transition in the community, saving almost $1 billion for Medicare and Medicaid as of 2013. North Carolina, like other states participating in the demonstration grant, will run out of funds if Money Follows the Person is not reauthorized.

Funding the Government

Congress has authorized funding for the federal government and the programs it runs through December 22nd. To avoid a government shutdown, Congress will need to pass a continuing resolution which requires bipartisan support.

NCCDD Releases 2017 Annual Report

It has been a year of focus and impactful accomplishments thanks to our members, partners and staff who uphold the Council’s mission to work collaboratively to assure that people with I/DD and their families participate in the design of and have access to needed community services, individualized supports and other forms of assistance that promote self-determination, independence, productivity and inclusion in all areas of community life. Continue reading about the Council's work in 2017 in our annual report:


 Download the 2017 NCCDD Annual Report

Mr. Dooley Goes to Washington

NCCDD Council Member Bryan Dooley attended the Association of University Centers on Disabilities (AUCD) conference in Washington, DC. Below is an excerpt from his blog "Observations from Below" that he writes for
The Huffington Post.

You have noticed that I have not written this month, due to an extended business trip. Firstly, I went to Cary, NC to attend an NC Council on Developmental Disabilities meeting. After that was over, I went directly to Washington D.C. for the third time within a year. The purpose of this trip was to visit the national AUCD conference and to present a poster for the NC Empowerment Network, a new self-advocacy organization which I’m helping get off the ground. Bryan Dooley

I shared a space with my friends Deb Zuver and McCafferty Kenmon from the Carolina Institute for Developmental Disabilities, which is home to the three major programs of national significance for I/DD. Those three include NC’s University Center of Excellence in Developmental Disabilities “UCEDD,” Intellectual and Developmental Disabilities Research Center “IDDRC,” and the Leadership Education in Neurodevelopmental Disorders “LEND.”

One interesting thing about attending several different conferences and representing different agencies is that I get to wear different hats. When I represent Disability Rights NC for example, I wind up hearing about law and disability rights. Since the university centers do more activities catered towards academic research, this felt more like a college symposium.

Before my presentation began, I had the opportunity to walk around and view other states’ research. There are some very cool initiatives going around the country. The most valuable connection I made was with the University of Minnesota. They have a very helpful website related to self-advocacy groups. It contains videos and information from a plethora of self-advocacy groups across the nation. Once NCEN gets established, it will be helpful for us to build a relationship with Minnesota so that we will have some type of national recognition.

My assistant Dave and I tried to get community integration by attending a sports bar so that we could watch the Carolina Panthers game. Dave searched and called the night before looking for wheelchair accessible locations for us to view the game. When we pulled up, the viewing of the game had been moved to across the street due to this certain location showing a big soccer match and the bar was full of Manchester City and Arsenal fans.

On Tuesday morning, I attended the plenary to listen to US Secretary of Labor, Alexander Acosta speak. He, unfortunately, did not attend, for reasons I do not know. I did hear a lot about emergency management and Puerto Rico from the rest of the participating panel. Overall, the conference was great for my confidence because it showed me that I know a lot of the important things that are happening in the realm of self-advocacy.

After that, my mom decided it was our best use of time leave and explore DC instead. We found an accessible double-decker tour bus and completed a whole tour well into the evening and in the rain.

The next day, my mother and I ventured out all day. This part of the trip was the most important to me. I got to visit the [Franklin Delano Roosevelt] memorial and see his homemade wheelchair. I also visited the [Martin Luther King, Jr.] memorial for the first time, too. I spent a lot of time with my mother, which was great. We almost had an incident on the way to the bus service, as there was a narrow sidewalk that was obstructed by a light pole. We thought I might be able to get past it, but I ended having a “controlled fall” off the curbside.

Adrenaline has amazing effects on moms, and she was able to catch me and my chair, which is over 300 pounds. Surprisingly, she didn’t have any after effects from the calamity that ensued. I did happen to lose a small piece of my chair, but ended up finding it again on the bus later in the day.

That’s how I roll…

Read the entire blog entry here.

Editor’s note: NC Empowerment Network (NCEN) is funded through the Inclusive Advocacy Leadership Development (IALD) initiative of the North Carolina Council on Developmental Disabilities (NCCDD). The initiative supports NCCDD's Goal 3 of the new Five Year Plan: Increase advocacy for individuals with I/DD.

Council Member Spotlight - Katherine Boeck

IMG 2059The biggest challenge North Carolina Council on Developmental Disabilities (NCCDD) new member Katherine Boeck says she faces when advocating for herself and others with disabilities is “getting listened to by those who are not advocates.” Boeck is bipolar as well diagnosed with Asperger’s Syndrome and general anxiety disorder.

“I am passionate about trying to help others,” Boeck explains. She applauds the Council’s work on advocacy and hopes to guide the Council to also focus on independent housing for those with intellectual and developmental disabilities (I/DD). Furthermore, she wants to be able to focus on people with I/DD to live in the home of their choosing, but still get the assistance they need. Boeck also hopes to work on the issue of discrimination against people with I/DD in the workplace.

A Tarboro, NC resident, Boeck is currently serving as vice chair for Disability Rights North Carolina’s Protection and Advocacy for Individuals with Mental Illness (PAIMI) Advisory Council. She is employed by Lidl as a store associate where she works in the warehouse, and supports the store as a cashier and in general maintenance.

A recent Nash Community College student, she was pursuing a culinary arts degree. She plans to return one day and switch her focus to literature, which she would like to teach upon graduation. Right now, she is busy with her animal rescue work. In her down time, she enjoys listening to music.


#EveryBodyWorksNC: Higher Education and Transition Programs Focus on Success in the Workplace for People with Disabilities

Post-secondary education programs (IPSE) and transition services are available for students with disabilities pursuing higher education or moving from high school to employment. Long-term employment solutions for those with intellectual and other developmental disabilities (I/DD) focus on the early integration of potential employees into the workforce through internships and other educational programs. These programs can begin as early as high school and are also available to adults looking for work.ProjectSEARCHGraduation web2Project SEARCH Graduation

Transition programs such as Project SEARCH help young people with disabilities move from high school into the workforce. This successful internship program prepares high school students and young adults with disabilities for employment, is currently offered at 14 sites across the state and continues to grow.

Expansion of Employment Opportunities is a recent North Carolina Council on Developmental Disabilities (NCCDD) initiative that has developed paid apprenticeships and pre-apprenticeships for individuals with I/DD who are interested in a specific career field. The goal was to bring together traditional and non-traditional partners to work together to improve employment opportunities for people with I/DD in North Carolina.

This past weekend WCU University Participant (UP) Program held its graduation ceremony and ushered in new graduates like Jalen and Ali! Let's congratulate the WCU UP class of 2016!  (Photos thanks to Ali B Photography)WCU University Participant (UP) Program graduate Ali (Photos thanks to Ali B Photography)Western Carolina University’s Learning and Earning After High School initiative provided transition services and resources for students with intellectual disabilities, even for those with the most complex needs. In partnership with the NC Department of Public Instruction (DPI), ten pilot programs were established at 20 partner schools to offer post-secondary education and integrated employment opportunities.

Some Inclusive Post-Secondary Education programs (IPSE) are producing a 40% paid competitive employment rate among participants, and there are a number of options for people with disabilities among the 27 post-secondary education programs across the State.

The University of North Carolina – Greensboro’s (UNCG) Beyond Academics and Western Carolina University’s University Participant (UP) IPSE programs are offering young adults with disabilities the opportunity to increase their employment potential like never before. To further expand access to higher education, UNC-Chapel Hill will launch Heels Up!, its post-secondary education program in August 2018.

On the national level, the Workforce Recruitment Program for College Students with Disabilities (WRP) connects employers with highly motivated college students and recent graduates with disabilities eager to prove their skills. The program offers summer or permanent jobs and, since 1995, has placed over 7,000 students and recent graduates in temporary and permanent employment positions.

“Inclusive post-secondary education drives independence, choice and certainly, competitive employment for young people with disabilities,” said Chris Egan, executive director of NCCDD. “When acclaimed universities open their doors to all students, it creates a welcoming environment of inclusion and acceptance for a more diverse and talented workforce.”

Get involved with EveryBody Works NC at https://nccdd.org/everybody-works-nc/about-everybody-works-nc.html

About EveryBody Works NC:
The Everybody Works NC campaign is increasing awareness of the untapped pool of talent found in the disability community and creating more and more job opportunities for people with disabilities. October was National Disability Employment Awareness Month (NDEAM), which kicked off the year-long EveryBody Works NC campaign with a statewide speaking tour, media relations programs, social media and a series of special events. The campaign is led by the North Carolina Council on Developmental Disabilities (NCCDD), the North Carolina Business Leadership Network (NCBLN) and the North Carolina Vocational Rehabilitation (NCVR) to promote and support inclusive workforce strategies.

Happy Holidays from NCCDD!

NCCDD Holiday2017


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