August 2016 Highlights & Hot Topics

• A Message from our Executive Director

• Public Policy Update

• NCCDD Seeks Nominations for Advocacy and Leadership Awards

• NCCDD Adopts Five Year Plan

• NCCDD Announces RFA for Supported Living Initiative

• Council Member Spotlight: Brian Dooley Appointed to NC Council

  Download a pdf of the August newsletter here.

A Message from Our Executive Director

August has been a busy month! The kids are back in school, marking the unofficial end of summer; Team USA athletes made us proud in the 2016 Olympics in Rio; and NCCDD has put the final touches on the new Five Year Plan (2017-2021) which was approved by the members for submission to the Administration on Intellectual and Developmental Disabilities (AIDD). We have now submitted the plan and look forward to where this will lead! In reflecting back on the development of the plan, this has been a two year journey and included our members, staff, network partners and stakeholders across NC. Our plan captures the important outcomes communicated to us by individuals with intellectual and other developmental disabilities, family members, advocates and other stakeholders. We are very excited and optimistic about all that we can achieve together over the next five years!

The statement “it takes a village” is something that we truly believe as we consider the opportunities and work ahead. Our efforts will have much greater impact through collaboration. We also must take the time to recognize and celebrate the successes that we have achieved in creating more opportunity, awareness and greater responsiveness. This takes the actions of many, however it is also true that certain individuals take on greater leadership to make things happen or to create change. Self-advocates, advocates and professionals are working everyday to make NC more inclusive and integrated for people with I/DD. Let’s honor these individuals by nominating them for the NCCDD Advocacy and Leadership Awards, which house the Jack B. Hefner Memorial Award and the Helen C. “Holly” Riddle Distinguished Service Award. The deadline to submit is September 26, 2016.

Advocacy Development is one of NCCDD’s Five Year Plan goals, and one of the biggest forms of advocacy is the disability voice: voting. This year, over 35 million people with disabilities are eligible to vote in the upcoming election, and this voice should be represented. The deadline to register to vote is October 11, so if you haven’t already, register to vote and have your voice heard at the polls!

And lastly, we want to convey our sincerest thanks to NCCDD Council Members Lourdes Fernandez and Crystal Foreman, who both dedicated eight years of service to the Council. Their service and dedication to the disability community and our Council is immeasurable.

Chris Egan
Executive Director

Public Policy Update

NCCDD’s public policy team continues to deliver local, state and federal updates on public policy that affects people with I/DD. Highlights of these updates include:

Budget

Governor’s Task Force Reserve Fund – The initial recommendation from the Task Force was for $30 million to address several areas of need. One of those was case management for children with I/DD and complex needs. The final budget allocates $10 million recurring funds and $10 million non-recurring funds.These funds will be put in a reserve and spent with approval of Office of State Budget and Management. It is not clear how it will be allocated, so it may or may not address I/DD needs. Most likely these funds will be directed to mental health/substance use disabilities (MH/SUD).

Single Stream Funding (state dollars) -- Provides a partial restoration ($30 million) for current year. Remember that the cuts were $110 million last year and $152 million this year, so this restoration is a small percentage of the cut. It allows for up to $30 million next year if there is a surplus in the Medicaid budget. Both of these are non-recurring.

Traumatic Brain Injury (TBI) Funding – Allocation of $2.37 million non-recurring for funds for the Brain Injury Association of NC, residential supports and supports for individual consumer needs.This continues funding that was allocated last year and is in addition to the pilot TBI waiver in the Alliance Behavioral Health area.

Innovations Waiver Slots – Allocation of $2.6 million recurring funding to add 250 new slots. This was not in the Senate or House budget and was a last minute addition to the budget.

Increase CAP/C nursing rates – Allocation of $2.3 million recurring to increase nursing rates in the CAP/C program.

Studies:

Strategic Plan for Behavioral Health Services – The Department of Health and Human Services (DHHS) is directed to conduct a statewide assessment of behavioral health services, including identifying the role, responsibilities and accountability of LME/MCOs. This report is due to the Health and Human Services Legislative Oversight Committee and the Medicaid and Health Choice Legislative Oversight Committee by January 1, 2018. This is an opportunity for input into the system.

Study of Innovations Waiver to Address Waitlist and Federal Changes – The Medicaid and Health Choice Legislative Oversight Committee is directed to study and report to General Assembly by January 1, 2017 on strategies for reducing the waitlist as well as single stream funding and federal mandates that affect Innovations services. This is short turn-around but a great opportunity to highlight the gaps in the I/DD system of support.

Study of Medicaid Rates for Residential Services -- This requires DHHS to study how adequate Medicaid rates are for residential services. The report goes to the Legislative Oversight Committee (LOC).

Legislation

Guardianship bill -- HB 817 AN ACT ENACTING THE UNIFORM ADULT GUARDIANSHIP AND PROTECTIVE PROCEEDINGS JURISDICTION ACT OF 2016. By passing HB 817, North Carolina has joined a growing number of other states in enacting a Uniform Adult Guardianship and Protective Proceedings Jurisdiction Act (UAGPPJA). This law aims to provide clear direction to the courts, attorneys, guardians and individuals about the proper jurisdiction for guardianship proceedings between states.

NC General Assembly Caucus

A bicameral, bipartisan I/DD Caucus was created to act as a legislative think tank, to encourage cross-committee collaboration, and to facilitate dialogue to improve the lives of individuals with intellectual and other developmental disabilities in North Carolina. Currently, 15 Representatives and three Senators have joined the Caucus, including the Council’s Representative Verla Insko and Senator Tommy Tucker. Co-chairs for the Caucus include Representatives Jean Farmer-Butterfield and Marilyn Avila and Senator Tamara Barringer. Chris Egan joined other I/DD thought leaders from The Arc and First in Families to provide background information and thank members for their ongoing commitment to I/DD.

State updates
CAP/C -- The NC Division of Medical Assistance is holding listening sessions on its proposed budget limits and reduction in respite funds in regard to its Community Alternatives Program for Children (CAP/C). A CAP/C Work Group, with a cross-section of stakeholders as members, was established early July. Work Group meetings are open to the public. Click here for remaining listening sessions.

Every Student Succeeds Act -- The Department of Public Instruction continues to draft its implementation plan for the most current reauthorization of the Early and Secondary Education Act. Information on the federal law, state implementation efforts and webinars can be found here.

The 1115 Demonstration Waiver Application, also known as Medicaid Reform -- North Carolina submitted its application on June 1. Over the next 18 months or so, CMS will review the application and discuss the reform plan in detail with the Department of Health and Human Services. Over the next three to four years, the NC Department of Health and Human Services will work closely with people who receive Medicaid services and their families, and with those that provide Medicaid and NC Health Choice services (such as doctors and hospitals) to build the new Medicaid health care system. In the meantime, the Medicaid program will continue as usual, and beneficiaries will receive care the same way they do now.

Voting Laws -- At the end of July, the Federal 4th Circuit Court of Appeals struck down a lower court’s ruling to uphold NC’s voting laws enacted in 2013. The latest court decision reinstates same-day voter registration, early voting, out-of-precinct voting and early registration for high school students. It also ends the Voter ID requirement. However, Governor McCrory is seeking a decision from the Supreme Court to overturn the 4th Circuit decision.

ABLE Accounts -- The state of North Carolina continues its efforts to start its ABLE program. Currently, only four states (Florida, Nebraska, Ohio and Tennessee) have launched ABLE Accounts.

Home and Community Based Services (HCBS) regulation implementation -- The state continues to convene a work group. Draft tools are being reviewed by a variety of stakeholders.

NCCDD Seeks Nominations for Advocacy and Leadership Awards

NCCDD recognizes that the progress of disability rights is not complete or possible without tireless advocates and professionals who are working to make North Carolina a more inclusive and integrated community.

Formerly called the Hefner/Riddle Awards, the Council renamed this important event the Advocacy and Leadership Awards to highlight two of the most important qualities that the namesakes presented and continue to present in their work for people with intellectual and other developmental disabilities (I/DD).

Jack B. Hefner served the State of North Carolina as a member of the North Carolina Council on Developmental Disabilities (NCCDD) from 1982 until his passing in 1994. As a father to a son with intellectual disabilities, "Big Jack" was willing to do whatever it took to enhance the quality of life for North Carolinians affected by disability. Jack B. Hefner's leadership inspired a generation of advocates and people with I/DD to work forcefully.

Helen C. "Holly" Riddle served as the Executive Director for the NCCDD for 23 years. Through her professionalism, innovation and tireless dedication to look beyond the barriers and focus on creative solutions, she led the journey to make North Carolina a state where inclusion and full participation are possible for all citizens. This award is the highest recognition given by the NCCDD to those professionals who have made lasting contributions towards improving opportunities, breaking down barriers and promoting increased quality of life for people with intellectual and other developmental disabilities.

Just like Jack and Holly, NCCDD wants to recognize self-advocates and professionals who are passionately working to make North Carolina and more inclusive and integrated place for people with I/DD.

Nominations for the Jack B. Hefner Memorial Award and Helen C. “Holly” Riddle Award for Distinguished Service are now open. Please nominate and share in your network to recognize those individuals that are making an impact across this community by clicking here or copying and pasting the URL: http://bit.ly/AdvocacyLeadershipAwards

NCCDD Adopts Five Year Plan

“Your Five Year Plan is important to the Department of Health and Human Services. It shows how everyone connects to the work being done and how all of the work feeds into DHHS’ goals for its Intellectual and Developmental Disabilities program,” said NC Department of Health and Human Services Deputy Secretary Sherry Bradsher. 

NCCDD’s Five Year Plan was adopted during its August 2016 Council meeting, and the new plan emphasizes three important goals that were determined through by gathering a great deal of input from individuals with I/DD and family members and stakeholders.

The new plan has three main goals:

• GOAL 1: By 2021, increase financial security through asset development for individuals with intellectual and other developmental disabilities.
• GOAL 2: By 2021, increase community living for individuals with intellectual and other developmental disabilities.
• GOAL 3: By 2021, increase advocacy for individuals with intellectual and other developmental disabilities.

Chris Egan, executive director of NCCDD, explains the plan is what will drive the work of the Council for the next five years. The plan is constantly evolving and will be updated each year. “It is meant to be a living process and will evolve as we do,” Egan added.

“The plan is so well done and so understandable. We truly appreciate our relationship with Chris [Egan] and his team, and we thank you [members] for your work,” Bradsher added.

Steve Strom, NCCD Systems Change Manager, said they will report at the November Council meeting on the Five Year Plan’s collective impact in the areas of common agenda, shared measurement, mutually reinforcing activities, continuous communication and organizational support of all participating agencies.

To read the Five Year Plan’s complete goals and objectives, click here.

NCCDD Requests Applications for Supported Living: Making The Difference Intiative

Under its second goal to increase community living for individuals with intellectual and other developmental disabilities in its Five Year Plan, NCCDD is seeking applications for the Supported Living: Making The Difference initiative. The grant is aligned with the goal's objective of: More individuals with I/DD will choose where and with whom to live in their community and will have transportation options to support community living and employment.

A Bidder's Workshop and informational conference call will be held on September 14, 2016 from 9:00 AM to 11:00 AM (EDT). You can RSVP by e-mail at [email protected] by September 13, 2016.

For more details and how to apply, visit http://nccdd.org/news-media/blog/54-initiatives/428-nccdd-announces-rfa-for-support-living-initiative.html.

Council Member Spotlight: Brian Dooley Appointed to NC Council

Bryan Dooley, the newest Council Member of the North Carolina Council on Developmental Disabilities, brings with him a plethora of enthusiasm for self and community advocacy for people with intellectual and other developmental disabilities (I/DD).

Living in Lewisville, NC, Dooley, who has cerebral palsy, began advocating from a young age and participated in the Youth Leadership Forum and numerous youth groups, including the National Youth Leadership Network and the American Association of People with Disabilities (AAPD). A graduate of Guilford College, Dooley won numerous leadership awards and scholarships, wrote for The Guilfordian and worked as a diversity coordinator while earning a degree in history.

Currently, Dooley writes blogs and social media posts for Lipfert Law Group, and in addition, he writes a blog for The Huffington Post titled “Observations From Below.” He serves on the board of The Adaptables Center for Independent Living in Winston-Salem and also serves on the Disability Rights NC Board.

Dooley completed NCCDD’s Partners in Policymaking program in 2014 and actively participates in the Advancing Strong Leaders in Developmental Disabilities initiative, the NC Post-Secondary Education Alliance, Disability Rights NC and speaks at numerous educational and disability advocacy events. Dooley is honored and excited to accept the invitation to become a NCCDD Council Member.

“One of the things I'd like to help with is collaboration between agencies. I sit on many boards, and I would like them all to come together and work on the same goals,” Dooley said. “A big [goal] for me is education. I've advocated for my local school system to push Senate Bill 753, to teach disability history/education in all the schools.”

SB753 was introduced in the 2007 NC Legislative Assembly and proposed to declare October as Disability History and Awareness Month. The bill was passed and requires local school boards to provide instruction on disability history and awareness.

In navigating the challenges of post-secondary education, Dooley is passionate to help other youth in the community achieve their educational goals. To do this, he is a member of the NC Postsecondary Education Alliance, which advocates for such programs as Beyond Academics, which helps people with disabilities to attend college and have a higher education experience.

During his time on NCCDD, employment is another issue that Dooley is passionate about and hopes to address. “In my opinion, there are a lot of other programs designed to help people with disabilities, but all the programs need to collaborate more,” he adds. “People with disabilities need to think about the transition out of school so that they can take the best classes geared towards jobs that fit. We could also ask for more internships to be available.”

Despite the fact employment was one of the main goals of Americans with Disabilities Act, the unemployment rate for people with disability is still unacceptably high compared to people without disabilities. Dooley’s belief is that economic security leads to many other aspects of living such as affordable housing, improved health and higher levels of community inclusion.

Dooley adds, “I spend most of my waking hours working on disability rights related activities. The same passion and commitment I have brought to blogging, attending meetings or helping young people with disabilities, I'm happy to bring the same to NCCDD and make a difference for the State’s I/DD community.”

Dooley’s writings can be found at: http://www.huffingtonpost.com/author/bryan-dooley

Connect with NCCDD:
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• A Message from our Executive Director

• Public Policy Update

• Debra J. Burgess and Dr. Patricia Burns Porter Honored at Advocacy and Leadership Awards

• Panel gives update on ABLE Act

• NCCDD Council Member Spotlight: Michael Groves

• Council Awards Two New Initiatives

• NCCDD Thanks Adonis Brown, Announces New Vice Chair

• NCCDD Releases 2016 Annual Report

 Download a pdf of the Nov/Dec newsletter here.

A Message from Our Executive Director

This is the season of giving thanks and celebrating community! It is also a busy time between the work leading up to our annual meeting in November and preparing for a short month in December, so we combined the November and December editions of Highlights and Hot Topics. At our meeting in November, we gave thanks and recognition to two strong advocate leaders in North Carolina who are advancing disability rights: Debra J. Burgess and Patricia Porter received the Jack B. Hefner Memorial Award and Helen C. “Holly” Riddle Distinguished Service Award, respectively, during the Council’s annual meeting and awards reception.

In addition to honoring career-long advocates, we also had the pleasure of hearing from Timothy Balogh, a future leader, who spoke about growing up with a disability, the importance of community, a network of support, and how he is living the life of his choosing. His powerful message received a cheering ovation, and I strongly encourage you to take a moment to hear and share his message.

Listening to the needs and interests of individuals across the state, NCCDD is able to convene learning opportunities and thought leaders from various communities. During the November Council meeting, we hosted panels on the NC Innovations Waiver and the Workforce Innovation and Opportunity Act (WIOA). We heard from representatives of the NC Department of State Treasurer on the progress implementing the Achieving a Better Life Experience (ABLE) Act. Finally, staff and members celebrated the federal approval by the Administration on Intellectual and Developmental Disabilities of our new Five Year Plan, setting the stage for important and exciting work ahead.

There has been a lot of progress to support the community of individuals with I/DD, and the Council is continuing its work to reach out to our entire state to make sure inclusion and integration are possible for everyone. I encourage you to review our 2016 Annual Report mentioned below.

Chris Egan
Executive Director

Public Policy Update

Jill Hinton and Erika Hagensen, policy consultants for the North Carolina Council on Developmental Disabilities (NCCDD), provided an overview of state and federal legislative and policy issues. State topics included:

· Innovations Waiver implementation
· Disability Rights North Carolina (DRNC) Settlement – Children with Intellectual and other Developmental Disabilities (I/DD) and Complex Behavioral Health Needs
· 1115 Waiver implementation
· Redistricting

The NC Innovations Waiver amendment has been approved by the Centers for Medicare and Medicaid Services (CMS) and was implemented on November 1, 2016. New services in the waiver include Community Living and Supports, Supported Living, and Community Navigator. The Supported Living services allow up to three individuals to live together without the home being licensed. This new service promotes self-direction and community living. There are changes to several other existing services, but the most significant waiver change is the move to Resource Allocation, which is based on the Supports Intensity Scale, the age of the individual and the living situation. Individuals and families are encouraged to ask for what is needed regardless of what level results from the Resource Allocation process. In addition, individuals and family members are encouraged to ask questions and seek more information from their LME/MCO as they receive letters regarding their new base budget.

Council member and Executive Director of DRNC Vicki Smith spoke about the DRNC settlement on children with I/DD and complex behavioral health needs. Smith said, “We’ve been following this since 2009. There are approximately 500 children who are Medicaid-eligible and will be impacted.” The goal is to improve access to services, create uniform practices to assess children for consistent care, provide appropriate medical and psychiatric services, authorize case management services, and begin operating one outpatient clinic starting in April 2017.

The 1115 Waiver (Medicaid Reform) was submitted to CMS on June 1, 2016. The expectation was that there would be no feedback from CMS until after the election, so North Carolina is still waiting on that response. In the meantime, input is being provided to the NC Department of Health and Human Services through the I/DD Medical Health Homes Initiative to ensure I/DD is included in a comprehensive manner within the 1115 Waiver.

The Legislature will be called into a special session in December to redraw voting districts as required by the panel of three federal judges who ruled in August that current districts are unconstitutional. On November 29, a federal court ordered North Carolina to hold a special legislative election in 2017 after the 28 state House and Senate districts are redrawn to comply with the gerrymandering ruling.

Read more here: http://www.newsobserver.com/news/politics-government/state-politics/article117843388.html#storylink=cpy

At the federal level, we have little information on the disability policy platform or objectives of the incoming Trump administration. With no disability-specific campaign platform or previous voting history to draw from, the disability community will be monitoring current statements, cabinet appointments, and President-elect Trump’s first efforts in office to inform a broader understanding. We do know that he spoke favorably of many policy changes that could dramatically impact individuals with I/DD, some of which include repealing or altering the Affordable Care Act, block granting Medicaid, privatizing Medicare, and reducing taxes, thereby lowering funds available for “discretionary spending” areas like housing, education, employment and transportation.

Many of these proposed policy changes are supported by the leadership of the Republican-controlled House and Senate and would likely be favorably received. Accepting a unanimous re-nomination as Speaker of the House, Paul Ryan (R-WI) said he’s ready to “go bold and go big” in the upcoming 115th Congress, which starts in January.

Every election at the local, state and federal level offers the opportunity to inform and educate both incoming and longstanding elected officials about the lives of individuals with I/DD. The NCCDD has a unique opportunity to:
1) Inform the North Carolina legislators and administrators about NCCDD’s Five Year State Plan and legislative goals with the help of self-advocates.
2) Support the I/DD Caucus’s efforts.
3) Be a resource at both the state and federal level for issues relating to the I/DD community.
4) Maximize the unique capacity and representation of Council members.
5) Create further dialogue through systems change grants.
6) Demonstrate our effectiveness as a non-partisan, cross-sector collaborator.

If you would like to help with these outreach efforts, contact NCCDD at 919-850-2901 or at 1-800-357-6916.

Debra J. Burgess and Dr. Patricia Burns Porter Honored at Advocacy and Leadership Awards

Deby Burgess (front) with the Hefner Family, Ron Reeve and Chris EganDebra J. Burgess and Dr. Patricia Burns Porter were recognized for their outstanding contributions in advocacy and leadership by the North Carolina Council on Developmental Disabilities (NCCDD) at its Advocacy and Leadership Awards Reception on November 16 at the Hilton Garden Inn in Cary, NC.

Burgess, parent and senior research assistant at Duke University for the Fragile X Project, was awarded the coveted Jack B. Hefner Memorial Award, which celebrates the vision and achievement of advocacy by North Carolina's families and people with intellectual and other developmental disabilities (I/DD).

Pat Porter (third from left) with Chris Egan, Holly Riddle and Ron Reeve

Porter, a consultant to the Joint Legislative Oversight Committee on Health and Human Services, NC General Assembly, received the Helen C. “Holly” Riddle Distinguished Service Award that honors leadership by a professional in the field of I/DD.

Chris Egan, executive director of NCCDD, said, “Our Council is pleased to honor Deby and Pat at this year’s awards reception. They are very strong and passionate leaders who have helped move us all forward on this journey to advocate for people with I/DD and families.”

 
Panel gives update on ABLE Act

“People are saying not since the ADA (Americans with Disabilities Act) have we had such powerful legislation that will change people’s lives,” said Mary Buonfiglio, Deputy Director for Supplemental Retirement Plans and the North Carolina ABLE Program in the NC Department of State Treasurer’s Retirement Systems Division.

Buonfiglio was part of a four-person panel on the Achieving a Better Life Experience (ABLE) Act at the NCCDD annual Council meeting in November. She was joined on the panel by Jennifer Carroll, the NC ABLE Program Manager in the NC Department of State Treasurer’s Retirement Systems Division; Erika Hagensen, Policy Consultant for the NCCDD and The Arc of North Carolina; and Melinda Plue, who sits on the NC ABLE Program Board of Trustees representing the community of individuals with intellectual and other developmental disabilities (I/DD).

The ABLE Act, signed into federal law in 2014 and North Carolina law in 2015, allows eligible individuals with disabilities to save money for qualified disability-related expenses into ABLE accounts, similar to the tax-deferred 529 educational plans. Buonfiglio expects the NC ABLE accounts to launch sometime during the first quarter of 2017.

Jennifer Carroll reported that the state of North Carolina belongs to a national multi-state consortium – the National ABLE Alliance. The Alliance helps in sharing information so North Carolina can provide a program that will specifically meet the needs of our citizens and establish an ABLE program within the funds appropriated to the Department of State Treasurer for recurring program costs. Ten other states in the consortium also plan to launch their ABLE programs during 2017’s first quarter like North Carolina.

Carroll said it’s been beneficial to see what other states are doing before finalizing North Carolina’s program. Community input, communicating with other states and working with product vendors has helped to diversify the types of products North Carolina is developing.

Erika Hagensen explained that 45 states plus the District of Columbia have signed ABLE into law; however, only six of those states are currently enrolling beneficiaries. Five out of six states are welcoming out-of-state enrollees. While states continue to implement the program, the original bipartisan, bicameral sponsors of the ABLE Act in Congress see opportunities to strengthen the ABLE and broaden eligibility. They introduced a trio of bills in the 114th Congress that would increase the age of disability onset, allow workers with disabilities to save additional funds, and allow transfer of funds, without penalty, from 529 education accounts to ABLE accounts. We anticipate these bills will be reintroduced in the 115th Congress -- stay tuned for future developments!

For more information on North Carolina’s ABLE program and sign up for updates click here. To learn about other state programs, compare products, and additional background information available in several formats, go to the National ABLE Resource Center.

Click here for the NC ABLE Powerpoint presentation.

 
NCCDD Council Member Spotlight: Michael Groves

Mike Groves has served as a Council member since 2011 and provides a distinct perspective to the North Carolina Council on Developmental Disabilities (NCCDD) as a person living with a disability. His priorities include affordable housing, education and funding to assist people with disabilities living an independent lifestyle. Groves personal and professional experience have given him a passion for finding assistance for parents and guardians of citizens with disabilities.

Groves understands disability from multiple perspectives. He has provided care to his father who has lived with disability since early adulthood and uses a wheelchair. Groves himself acquired a disability after 25 years of service at Goodyear. In addition, his adult son has a disability.

Having family with three generations experiencing disability provides him with insight for not only the strides made by the disability community, but also issues and needs that we must address to improve the lives for people with disabilities. Groves is dedicated to being a voice for the disability community, including the all-too-common challenge of families independently navigating both disability care and aging services.

Currently living in Dunn, NC, Groves was appointed to the NCCDD by the Governor after Sadie Barbour retired. As an American Indian advocate, Groves commented, “I am committed to spreading the knowledge that I obtain throughout our communities, local and statewide.” Groves adds, “As vice chair of the Harnett County Indian Association and a member of the Coharie Intra-Tribal Council, I am able to get information, such as what I/DD challenges there are in our local areas.”

Often, it is where families gather at community events where conversations and dialogue shed light on challenges that families have in living independently. Groves wants to strengthen that local, on-the-ground voice.

 
Council Awards Two New Initiatives

NCCDD awarded funds for two initiatives to further its goal of increasing community living for people with I/DD.

The Supported Living: Making a Difference initiative was awarded to Vaya Health, formerly known as Smoky Mountain MCO. This initiative will provide technical assistance to MCOs and providers for the new waiver service, Supported Living. Through the use of demonstration projects, national experts in supported living, a learning community consisting of individuals receiving the service, their family members, professionals and policy makers will work together to learn and inform the system on how best to provide a new service in the community.

The Arc of North Carolina was awarded the initiative entitled, “From Planning to Action: Integrated, Collaborative Care for People with Intellectual and Developmental Disabilities.” This initiative will build upon the work of the I/DD Medical Health Home Initiative and, informed by three years of cross-sector collaborative work, will launch two regional pilot programs: 1) disability-informed health care navigation; 2) a consultation network for physicians working with individuals with I/DD. A competitive request for proposal for these two pilot programs will be announced in January. Both NCCDD initiatives will begin January 2017.

 
NCCDD Thanks Adonis Brown, Announces New Vice Chair

Dr. Wing Ng, a parent of a child with a developmental disability and a physician in Raleigh, has been named the new vice chair of NCCDD. Adonis Brown, NCCDD Council member since 2007, completed his term as vice chair of NCCDD, and will complete his service to NCCDD in 2017. Brown, from Durham, NC, was a key leader in many of the Council initiatives, most recently in leading the Council in the development of its new Five Year Plan (2017-2021) that took effect on October 1, 2016.

 
NCCDD Releases 2016 Annual Report

Highlighting an active and impactful 2016, NCCDD has released its annual report. The report covers the Five Year Plan and the Council’s initiatives. Additionally, the report highlights the statewide events the Council hosted at Atlantic Beach, Hanging Rock State Park and in Raleigh, NC.

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• A Message from our Executive Director

• Public Policy Update

• #InclusionWorks: Stories of Employment for People with Disabilities

• Project SEARCH, Apprenticeships Make Employment A Reality

• Community Living: Santa's Hackers Volunteers Adapt Toys for Children with Disabilities

 Download a pdf of the October newsletter here. 

A Message from Our Executive Director

Celebrated every October, National Disability Employment Awareness Month brings to attention the need for competitive, inclusive employment for people with disabilities. This year the theme is #InclusionWorks to showcase that including people with disabilities in the workforce leads to the achievement of very important outcomes for the employee and the employer. When the employee is contributing, the employer benefits from those contributions. In fact, data shows us that production can increase, as does the morale in the workplace, when diversity in the workplace increases. Additionally, innovative solutions may be explored and put into place which may benefit the employee with a disability and other employees.

Here at the North Carolina Council on Developmental Disabilities (NCCDD), we’ve been celebrating the month by sharing the stories of people with intellectual and other developmental disabilities (I/DD) who are employed around the State. We are learning about incredible contributions in the workforce and the businesses involved. You may have met Jaimie Yahnker, diagnosed with cerebral palsy, who is a hospitality associate at Vidant Medical Center; or Gregg Hamm, executive chef and founder of P.G. Werth's, whose staff is 30% people with disabilities and more. Check out their stories on our website at http://bit.ly/NCCDDInclusionWorks

One of NCCDD’s goals under the new Five Year Plan is Financial Asset Development. Current initiatives supporting this important goal include:

• Project SEARCH through Cincinnati Children’s Hospital is a business-led, one-year, school-to-work program that combines classroom instruction, career exploration, and relevant job-skills training through strategically designed internships for students with I/DD. And, now NC Department of Health and Human Services will serve as Project SEARCH’s newest site!
• Learning and Earning after High School through Western Carolina University, along with NCCDD, has created a sustainable approach to providing transition resources for students with intellectual disabilities, even for those with the most complex of these disabilities. Successful transitions should be considered very early, certainly ahead of and during middle school and should continue through high school and beyond.
• Upward to Financial Stability is contracted through the National Disability Institute. This initiative provides education and training to spread financial awareness and conducts financial literacy training to individuals and families to raise expectations for people to develop and better manage their financial assets.

Join us in celebrating October’s National Disability Employment Awareness Month (NDEAM)! We hope you enjoy our stories of employers and employees who are telling everyone that #InclusionWorks!

Chris Egan
Executive Director

Public Policy Update

NCCDD’s public policy team continues to deliver local, state and federal updates on public policy that affects people with I/DD. Highlights of these updates include:

Innovations Waiver:
The NC Innovations Waiver amendments will go into effect on November 1, 2016. The State has conducted readiness reviews and provided trainings to the LME/MCOs. The LME/MCOs were responsible for informing individuals and families about the upcoming changes and the date for implementation.

There are several positive changes in relationship to service definitions that move the system forward in promoting choice and independence. The biggest change in the new waiver is the addition of the resource allocation model. Individuals with November birthdays will be the first to experience this new process. We are hearing from members and other families raising questions and some concerns about the communication and transparency of the process, as many individuals and families received letters describing new levels of funding based on the resource allocation. The Council has reached out to the NC Division of Medical Assistance (DMA) and is gathering more information about the resource allocation formula and process. Plans are being finalized for a panel discussion during the November meeting of the Council, focusing on the Innovations Waiver.

During the legislative session this past year, 250 new Innovations Waiver slots were appropriated. These slots will go into effect in January 2016. The allocation of these to LME/MCOs has not been determined.

Legislative Oversight Committee:

At the recent legislative oversight committee, there was focus on the issue of Local Management Entity/Managed Care Organization (LME/MCO) fund balances and the cuts to single stream funding that occurred over the past two years. More direction will be given to the LME/MCOs about the appropriate amounts for fund balances going forward. There continues to be an effort to monitor the effect of the cuts to single stream funding as the intent was that services should not be affected as they could be covered through the existing LME/MCO fund balance resources.

Discussions also occurred regarding the strategic plan study of the Mental Health/Developmental Disabilities/Substance Abuse Services (MH/DD/SAS) system that was part of legislation last session. A subcommittee will be appointed to work with the department and division of MH/DD/SAS to develop this strategic plan.

Voting: Information you can use!

Many people have questions about voting requirements. Disability Rights North Carolina has created a great resource - www.accessthevotenc.org.Learn more about voter registration and voting, candidate information, reporting a violation, and an email listserv to be kept up-to-date on any further changes. Remember:Voter ID is not required.

Important dates:

10/20 -11/5/16:  Early voting period – contact your local County Board of Elections for times and locations. Same day voter registration is allowed during early voting.

11/8/16:  Election day

#InclusionWorks: Stories of Employees with Disabilities

North Carolina Council on Developmental Disabilities (NCCDD) recognizes October as National Disability Employment Awareness Month (NDEAM). Reflecting the important role disability plays in workforce diversity, this year’s NDEAM theme is #InclusionWorks. Observed each October, NDEAM celebrates the contributions of workers with disabilities and educates employers about the value of a diverse workforce inclusive of their skills and talents.

NCCDD collected stories about employees with disabilities and employers who hire people with disabilities to learn more why #InclusionWorks. Check out the stories here: http://bit.ly/NCCDDInclusionWorks

 Project SEARCH, Apprenticeships Make Employment a Reality for Young Adults with I/DD

“We make a difference everyday.” That is the slogan of both Project SEARCH and 22-year-old Connor Bilhardt. Project SEARCH is a high school transition initiative which is a business-led, one-year, school-to-work program that combines classroom instruction, career exploration and relevant job-skills training through strategically designed internships for students with intellectual and other developmental disabilities (I/DD). Bilhardt is a young man who has achieved employment success because of the initiative.

He works at the Groomtowne Road Food Lion in Greensboro, North Carolina. A recent graduate of Western Guilford High School and a June graduate of Project SEARCH, Bilhardt, who is on the autism spectrum, works three days a week in the produce department.

“My favorite part of my job is that I like to help people find items,” he says. He has been saving his paychecks for things such as going to the movies and camp at Rockbridge in Virginia.

The Project SEARCH initiative, contracted through Cincinnati Children’s Hospital Medical Center, is funded by the North Carolina Council on Developmental Disabilities (NCCDD). Project SEARCH helps students develop employable and functional skills, providing them with three internship rotations that prepare them for obtaining jobs after graduation.

Within a few months of graduating, Lucas McIntyre has received the highest level of employee recognition -- 100% Guest Delight -- as a server assistant/busser at the Olive Garden Italian restaurant in Burlington. Meanwhile, Richard Henderson became a dishwashing assistant at the Village Grill in Burlington and saw his hours increase from 20 to approximately 30 as his pace, confidence and social skills also improved. Other Project SEARCH graduates have landed jobs at places such as NC A&T University, High Point Regional Health System and positions in respite care, nursing homes and animal shelters.

In addition to supporting the sustainable expansion of Project SEARCH in our state, NCCDD recognizes the value of paid internships for individuals with I/DD and is supporting their development through a new employment initiative that started on October 1. The Business Apprenticeship Career Training Service (Business ACTS©™) has previously established a successful partnership training individuals with I/DD to become feeding assistants for residents with dementia at Sharon Towers in Charlotte. The feeding assistants help senior residents manage the tasks of eating and drinking while permitting the nurses and certified nursing assistants to focus their attention on providing clinical care.

Feeding assistants, such as Lisa Nickerson, are earning income and the opportunity to save money for items such as a car and an apartment, while gaining skills that build their confidence and allow them to start realizing future goals. Because the program is a registered pre-apprenticeship with NCWorks, the feeding assistants will also earn a registered Feeding Assistant Certificate.

NCCDD is also planning to form a coalition/partnership designed to increase competitive, integrated employment for people with I/DD through engaging traditional and non-traditional partners, including businesses that may have an interest in becoming a Project SEARCH host site or offering apprenticeships for people with I/DD.

Community Living: NCCDD Assists Santa’s Hackers to Make Adaptable Toys

Volunteers reassembled about 350 toys after making them adaptable for children with disabilities on Saturday, Oct. 22 at the McKimmon Center in Raleigh through the Santa’s Little Hackers event. The adaptable toys allow the kids to play, interact, find joy and learn. NC Department of Health and Human Services Secretary Rick Brajer addressed the volunteers at the event and NCCDD Executive Director Chris Egan volunteered at the event.

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• A Message from our Executive Director

• Public Policy Update

• NCCDD Seeks Nominations for Advocacy and Leadership Awards

• Family Support Network Hosts Transition Fair in Asheville

• NCCDD Seeks Systems Change Manager to Join Team

• NCCDD Requests Applications for Supported Living: Making The Difference Initiative

• First In Families Brings Together Adult Siblings of People with Disabilities

• Chris Egan Receives Honor from The Arc of North Carolina

  Download a pdf of the September newsletter here.

A Message from Our Executive Director

September has presented many ways our community can get involved in pushing NCCDD’s mission forward to make North Carolina a more inclusive and integrated state for people with intellectual and other developmental disabilities (I/DD).

Self-advocates, advocates and professionals who work and advocate on behalf of the disability community here in North Carolina are integral to the progress we have made and continue to make. And it is important for us to recognize the hard work and passion of these individuals who continue to speak up and speak out for the I/DD community. The deadline to nominate these individuals for the Jack B. Hefner Memorial Award and Helen C. "Holly" Riddle Distinguished Service Award is fast approaching on Monday, Sept. 26, so get your nominations in!

As I mentioned, our work isn’t complete without the professionals and advocates who have made this their life’s work. To support its new Five Year Plan, NCCDD is seeking a Systems Change Manager who will lead and manage initiatives that will make our goals a success in North Carolina. Additionally, the Council has opened an RFA for programs that support its Community Living goal under the new plan.

October will celebrate National Disability Employment Awareness Month, and what better way to start the month than with The Sixth Annual WNC Regional Transition into Adulthood Fair, A Journey Toward Independence: Positive Outcomes for Youth with Disabilities in Asheville, NC. There will be great resources for families to learn about early transition planning so all students with disabilities can have a successful adulthood.

There are a lot of activities and ways to get involved to support the I/DD community and we hope you join us as we pave the way to make NC a more inclusive and integrated state.

Chris Egan
Executive Director

Public Policy Update

NCCDD’s public policy team continues to deliver local, state and federal updates on public policy that affects people with I/DD. Highlights of these updates include:


Federal Policy:

The Advisory Committee on Increasing Competitive Integrated Employment for Individuals with Disabilities delivered their final report to US Secretary of Labor Thomas E. Perez on September 15, 2016. Created by the Workforce Innovation and Opportunity Act (WIOA) of 2014, this committee was charged with developing recommendations to improve the employment participation rate of individuals with disabilities across the nation. The recommendations are intended to increase opportunities for competitive integrated employment for individuals with intellectual and developmental disabilities (I/DD) and other disabilities. Ensuring that employment is the first option for people with I/DD or other significant disabilities will increase their employment participation rate and lead to a significant reduction in segregated work and non-work programs and in the use of Section 14(c) certificates for paying subminimum wages. With a work force participation rate of less than a third that of the general population, people with disabilities must be included in efforts to develop the skills and experiences necessary to successfully enter the workforce.

State policy:

Voting: Information you can use!

Many people have questions about voting requirements. Disability Rights North Carolina has created a great resource - www.accessthevotenc.org.Learn more about voter registration and voting, candidate information, reporting a violation, and an email listserv to be kept up-to-date on any further changes. Remember: Voter ID is not required.

Important dates:
10/11/16:  Last day to register to vote from home

10/20 -11/5/16:  Early voting period – contact your local County Board of Elections for times and locations. Same day voter registration is allowed during early voting.

11/8/16:  Election day

NCCDD Seeks Nominations for Advocacy and Leadership Awards

The deadline to submit nominations for NCCDD’s Advocacy and Leadership Awards is Monday, Sept. 26. Please nominate and share in your network to recognize those individuals for the Jack B. Hefner Memorial Award and Helen C. "Holly" Riddle Distinguished Service Award.

The Advocacy and Leadership Awards highlight two of the most important qualities that the namesakes - former NCCDD Council member Jack B. Hefner and former NCCDD Executive Director Holly Riddle - presented and continue to present in their work for people with intellectual and other developmental disabilities (I/DD).

Read more about the awards and the applications are available here: http://bit.ly/AdvocacyLeadershipAwards

Family Support Network Hosts Transition Fair in Asheville

The Sixth Annual WNC Regional Transition into Adulthood Fair, A Journey toward Independence: Positive Outcomes for Youth with Disabilities will be held on Saturday, October 1, 2016 from 11:00am to 5:00pm at Mission Health/A-B Tech Conference Center, 340 Victoria Rd. Asheville, NC 28801.

This year, there will be four educational sessions provided for attendees. Participants will have the chance to meet with exhibitors/agencies that provide services related to housing options, employment, post-secondary education and community engagement programs. Chris Egan, NCCDD’s executive director, will also be the event’s keynote speaker. He will highlight high expectations and that a person’s disability is not a limiting factor to building and leading a successful, meaningful life.

The nature of this event appeals to parents of children with special needs as well as developmental disability specialists, special educators, service/care coordinators, mental health professionals, allied health professionals, teachers, school nurses/counselor and other interested health and human services professionals. It offers a great opportunity to meet and network with other providers.

Please contact Kerri Eaker, Family Support Outreach Coordinator, for the Family Support Network ™ of WNC at 828-213-0047, or by email at [email protected] for more information. Download the flyer and program here.

NCCDD Seeks Systems Change Manager to Join Team

NCCDD is hiring a systems change manager to join its team! The Systems Change Manager will coordinate, plan and guide the Council's investment in initiatives to accomplish goals set forth in the Council's Five Year Plan. This includes research, analysis, administration and management, budget and finance, relationship building with other state, federal, and local agencies in the promotion of independence, productivity, integration and inclusion of people with intellectual and other developmental disabilities (I/DD) into the community

For more details and how to apply: http://bit.ly/SystemsChangeManager

NCCDD Requests Applications for Supported Living: Making The Difference Initiative

In its State plan, NCCDD set out the goal that the Council will increase community living for individuals with intellectual and other developmental disabilities ( I/DD). To reach this goal, NCCDD has committed its funds to expand and strengthen North Carolina’s capacity to support people with I/DD, who may have traditionally been excluded from living according to supported living principles. Deadline to apply is October 10, 2016.

For more details and how to apply, visit http://nccdd.org/news-media/blog/54-initiatives/428-nccdd-announces-rfa-for-support-living-initiative.html.

Taking Initiative: First In Families Brings Together Adult Siblings of People with Disabilities 

Mellage familyOn her birthday, when her cake with flaming candles was placed in front of her, Kelly Mellage would close her eyes and wish for the same thing year after year – that her big sister Angela would talk. Kelly didn’t care what Angela would say, she just wanted to hear her sister’s voice. Then she would blow out the candles.

That wish hasn’t come true, yet. Forty-seven years ago, Kelly’s older sister Angela was born with intellectual and developmental disabilities (I/DD) that impacted her independence profoundly. She is non-speaking, lives with seizures and requires constant supervision. Although Angela walked as a child, she now uses a wheelchair and requires the support of multiple caregivers to help meet many needs such as personal care and learning new skills.

Angela, Kelly and their younger brother, Brian, grew up in New Jersey, where friends and family took Angela’s physical and mental challenges in stride. But a move to Raleigh, North Carolina when Kelly was high school age meant she had to start all over ‘explaining’ to her peers about Angela. Growing up, Kelly never knew a single person who was a sibling of a person with I/DD like she was.

Enter the North Carolina Council on Developmental Disabilities (NCCDD) Sibling Support Initiative, managed by First In Families of NC (FIFNC), which address the various needs and barriers that adult siblings of a person with an intellectual or other developmental disabilities face. But the initiative also lets us all hear the dreams and interests held by these adult siblings. Read more

Chris Egan Receives Honor from The Arc of North Carolina

Chris Egan, executive director of the North Carolina Council on Developmental Disabilities, received the 2016 Deborah Greenblatt Distinguished Service Award from The Arc of North Carolina. The award was presented at the organization's statewide conference held from Sept. 8-9, 2016 in Charlotte, NC. 

The award honors an individual or organization that has contributed in a distinguished manner to the promotion of rights and/or services to North Carolina citizens with developmental disabilities.

It is named for Deborah Greenblatt, a North Carolina attorney, who was a passionate advocate for children and adults with mental disabilities and the executive director of Carolina Legal Assistance for 23 years. She was primarily responsible for bringing together the diverse coalition of disability advocates and education stakeholders who drafted the current bill promoting the safe use of seclusion and restraint in public schools, now known as the Greenblatt Act.

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