• • • • • Letter from the Executive Director 
          
          
        • Public Policy (as of November 9, 2022 )
          
          
        • Judge Issues Landmark Ruling to Increase Services and Supports for North Carolina's I/DD Community 
          
          
        • Council Honors Three Disability Advocates
          
          
        • Transition to Competitive, Integrated Employment
          
          
        • SARTAC Fellow: Kenneth Kelty and The Waiting Room Podcast
          
          
        • En Español - noviembre 2022
          
          
        • Audio - Highlights and Hot Topics
          

Letter from the Executive Director 

Lois Curtis, one of the most impactful disability advocates of her time and the key plaintiff in the monumental Olmstead Case, died on November 3, 2022. NCCDD mourns her loss while celebrating and reaffirming its commitment to carrying out her message of equality and fair treatment for every person with intellectual and/or other developmental disabilities (I/DD). In fact, Lois’ passing coincided with an important ruling for the I/DD community.

On November 2, a North Carolina judge issued a landmark Olmstead ruling in the Samantha R. case, which ordered the State to serve all individuals with I/DD on the waiting list within ten years, ensure that there is a sufficient and adequate direct support care workforce, and enable individuals to live in the community and not in institutional settings. You can read the order here.  

In 1999, the Olmstead ruling upheld that the Americans with Disabilities Act requires that people with disabilities receive state-funded services in the most integrated setting appropriate to their needs. Justice Ruth Bader Ginsburg stated that it is discrimination to unnecessarily segregate a person with a disability in an institution. The I/DD stereotype labels  people with disabilities in institutions as “incapable” or “unworthy” of living and participating in the community. This false and detrimental belief  separates people in institutions from the traditional activities of daily life, isolating them from family relations, socialization, employment opportunities, economic independence, educational advancement and cultural enrichment.

This is also a critical time in North Carolina because people like our council chair, Bryan Dooley, are not receiving the support they need to live in the community.  Bryan spoke at the Council awards dinner on the same night of the Samantha R. ruling.  He said he was eleven days away from not having a Direct Support Professional (DSP) due to the DSP workforce shortage.

Despite continuing challenges for advocates, politicians and community members to truly see Olmestead in action, small steps continue to build large impact and make change. We are all fortunate to have had Lois contribute to that impact. To honor her life and her contributions, NCCDD encourages the community to watch a movie about Lois and her life, The Art of Being LC.  It highlights her extraordinary talents as an artist, her unrelenting advocacy efforts, as well as her struggles to maintain independent living as a person with I/DD. This month, and every month after, we will celebrate Lois Curtis and continue to carry out her legacy so every individual with a disability truly can live a full and meaningful life in the community.

Talley Wells, Executive Director

Public Policy (as of November 9, 2022)

Federal Budget

The House of Representatives and Senate continue to work on appropriations for the 2023 fiscal year. Appropriations are annual funds set aside for specific federal programs. Some of the annual appropriations go towards supporting people with disabilities. This includes access to quality education, employment opportunities and other community supports and resources. Funding for most programs that impact people with disabilities is included in the Labor, Health, Human Services, Education and Related Agencies (LHHS) Bill. Advocates are working with Congress to increase funding in some of the programs, including Leadership Education in Neurodevelopmental and Related Disabilities (LENDs) and University Centers for Excellence in Developmental Disabilities (UCEDDs).

The federal fiscal year runs from October to September. A continuing resolution was passed on September 29, which extended funding for the federal government through December 16 and prevented a shut down. After the election, Congress will determine how to complete the process for the 2023 fiscal year.

Plain Language – US Senators and Representatives are working on a federal budget. They are deciding how to spend money and advocates are working with them to make sure people with disabilities receive the support they need.  

Federal Bills to Follow

Mental Health Matters Act: The House of Representatives passed the Mental Health Matters Act (H.R. 7780), which included a bill called the Respond, Innovate, Succeed, and Empower (RISE) Act. The RISE Act will require colleges to accept a student’s proof of disability from K-12 schools when they request accommodations in college. Currently, many college students have to pay for extra doctor’s appointments and additional testing to provide proof of disability. For this bill to pass, it will also need to go through the Senate. 

Plain Language: Congress is working on a bill that will help college students with disabilities. If this bill passes, students with disabilities will no longer have to provide additional documentation as proof of disability when a student requests accommodations from a college or university. This will save college students with disabilities and their families time and money.

Transformation to Competitive Integrated Employment Act: (S. 3238 / H.R. 2373) Senators Casey (D-PA) and Daines (R-MT) as well as Representatives Bobby Scott (D-VA-3rd) and McMorris-Rodgers (R-WA-5) introduced the Transformation to Competitive Integrated Employment Act. The bill will phase-out the use of 14(c) of the Fair Labor Standards Act, which currently allows businesses to obtain a certificate from the Wage and Hour Division to pay people with disabilities subminimum wages. The bill will also assist employers in transforming their business models to support individuals with disabilities through competitive integrated employment. The Act has been introduced but has not yet passed. 

Plain Language: There is a bill in Congress that would end paying people with disabilities subminimum wage and help businesses support employees with disabilities through competitive integrated employment. Advocates are working with representatives to get this bill passed. 

State

Legislature – The Long Session begins in January. One of the primary goals of the session is to pass a two-year budget to support programs and initiatives from July 2023 to 2025.  The previous two-year budget was successful in funding additional waiver slots, increasing wages for direct support professionals, and supporting adjustments to special education. While this was a positive start, there is hope that this coming budget will provide additional allocations to further meet the I/DD community’s needs. 

Plain Language: The NC legislature will meet for the Long Session in January to work on a two-year budget. Advocates will be working to make sure the budget includes money for services for people with disabilities. 

Samantha R., et al. v North Carolina and the NC Department of Health and Human Services: After Samantha R. was admitted to a state-run institution for people with I/DD as a result of inadequate access to community care in 2015, Disability Rights North Carolina filed a suit on behalf of her family and others in similar situations against the State of North Carolina. In 2020, Judge Allen Baddour ruled that the State was in violation of the Olmstead Act. However, the State has not taken adequate measures to rectify the problem since the ruling. This month, the judge issued an order to the State with measurable timelines and goals that would give the I/DD community more options and opportunities for community care. 

Plain Language: A 2020 ruling found the State of North Carolina was violating the Olmstead Act and is now being pushed to create measurable goals and timelines that will provide people with I/DD more resources and opportunities for community care.

Judge Issues Landmark Ruling to Increase Services and Supports for North Carolina's I/DD Community 

Superior Court Judge R. Allen Baddour entered an injunctive relief order in Samantha R., et al. v. North Carolina and the NC Department of Health and Human Services, a lawsuit filed in 2017 by Disability Rights NC (DRNC).

The Order says:

• The Innovations Waiver waiting list must be eliminated in 10 years. There are currently over 16,000 people on the waiting list. The Order requires that these 16,000+ people, and those who qualify for the waiting list over the next 10 years, must be provided their needed services.
• The State must effectively resolve the shortage of Direct Support Professionals (DSPs) who provide community-based support. The Technical Assistance Collaborative (TAC) has advised NC DHHS that the DSP issue can be remedied through better compensation and by professionalizing the workforce. The Order requires the State to be accountable for solving workforce issues and closing the service gap. The parties will review available data and propose specific benchmarks for the State to adopt.
• The State must divert or transition 3,000 people who want to leave or avoid institutional settings over the next 8 years and cease new admissions after 6 years, except for respite or short-term stabilization. The Order sets an annual benchmark that the State can meet by employing programs and processes it has used in other contexts, such as in-reach and diversion programs.
• The State must provide quarterly reports regarding each measure ordered by the Court and post data to its website so the disability community can access timely information about the State’s progress. The State will report detailed information to DRNC and the Court to allow for verification and tracking.

Meet the Need NC and the North Carolina Council on Developmental Disabilities issued a joint statement on the landmark decision to meet the needs of the I/DD community:

"This ruling reflects the work of so many disability advocates who have spent years advocating for people with intellectual and developmental disabilities (I/DD) on the waiting list and those who lack supports due to the Direct Support Professional workforce shortage. We will continue to raise awareness and work to ensure that all people with I/DD can live full and meaningful lives in their communities," said Beth Field, Program Director for Meet the Need NC and Talley Wells, Executive Director of NCCDD.

Council Honors Three Disability Advocates

Three North Carolina leaders in disability advocacy were honored at the annual Advocacy and Leadership Awards presentation during the November meeting of the NCCDD in Cary, North Carolina. The three prestigious awards – The North Carolina Leadership Achievement Award, Jack B. Hefner Memorial Award and The Helen C. “Holly” Riddle Distinguished Service Award – honor their namesakes and those who continue to carry out important political and community work to enhance the lives and opportunities for people with intellectual and other developmental disabilities (I/DD). 

The North Carolina Leadership Achievement Award, which recognizes an outstanding North Carolina self-advocate whose work has improved the quality of life for people with I/DD, was awarded to R.V. Kuser of Winston-Salem. Having worked as a developmental specialist and autism coordinator, Kuser has traveled the state speaking about autism and schizophrenia. He is the author of two books: Challenged But Not Defeated, Strategies for Coping with Autism and Schizophrenia and Weight A Minute! Lessons a Family Learns Thru the Gift of Autism. He is a board member on the Winston-Salem Mayor’s Council for Persons with Disabilities as well as Solutions for Independence.

The Jack B. Hefner Memorial Award honors family members or volunteers who  advocate for a more inclusive, understanding and supportive local and state community for people with I/DD. This year, the award was presented to Kerri Eaker of Asheville. Recently retired, Eaker most recently served as the family support and outreach coordinator for Mission Health System. Among her many impactful roles, she was appointed chair of the North Carolina Council on Developmental Disabilities in 2019, was the founding member of North Carolina Families United and served as co-chair of the Cleveland County Children’s Collaborative. The mother of a son with disabilities, Eaker has traveled the state sharing her experience, knowledge and ideas on disability advocacy.

The Helen C. "Holly" Riddle Distinguished Service Award recognizes professionals who have made lasting contributions towards improving opportunities, breaking down barriers and promoting increased quality of life for people with I/DD in North Carolina. 

This year, the award was given to Matt Herr of Raleigh, Assistant Division Director for System Performance for the North Carolina Department of Health and Human Services. 

Herr helped to draft and implement Executive Order No. 92, Employment First for North Carolinians with Disabilities, to increase opportunities for fair wages, employment, and careers for individuals with disabilities in state government. 

While previously serving as a policy attorney for Disability Rights NC, Herr acted as a lead lobbyist in passing Raise the Age. This legislation ended the state’s practice of automatically prosecuting 16 and 17-year-olds as adults, disproportionately impacting youth with disabilities and youth of color. Herr has also been a thought leader in reforming guardianship laws in the state. He assisted during the launch of the NC Empowerment Network — a group of people with disabilities who work together to advocate, empower, and affect change throughout the State of North Carolina.

Additionally, Herr designed, built and launched the initial accessthevotenc.org, which was fully accessible and North Carolina’s very first voter information website designed-specifically to address the needs of voters with disabilities. 

Transition to Competitive, Integrated Employment

In early November, the North Carolina Council on Developmental Disabilities (NCCDD), in collaboration with the i2i Center for Integrated Health, hosted a Competitive Integrated Employment (CIE) information session. The session provided an opportunity for individuals with intellectual and other developmental disabilities (I/DD), families, providers, and state representatives to share knowledge about the state’s transition to CIE. It also discussed key considerations such as choice, benefits counseling and family-driven approaches.

Panelists included:

• Dave Richard, Deputy Secretary of NC Medicaid
• Ryan Rotundo, Manager of Employment Programs at the National Down Syndrome Society (NDSS)
• Jesse Smathers, President of Marketing Association of Rehabilitation Centers  Inc. (MARC)
• Nancy Baker, parent of an individual with I/DD
• Kathie Trotter, Director of the Division of Vocational Rehabilitation Services (DVR)

Recently, a $13.8 million federal five-year grant was awarded to the state to help people with I/DD access inclusive jobs with competitive wages and benefits. Specifically, CIE aims to create diverse working environments that support people with and without disabilities. It also requires that people with I/DD have the same opportunities for growth and advancement, receive minimum wage or above, and have access to the same benefits as employees without disabilities. Kathie Trotter of DVR shared that North Carolina was one of only four states receiving a grant for Subminimum Wage to Competitive Integrated Employment (SWTCIE) demonstration projects by the U.S. Department of Education’s Rehabilitation Services Administration. North Carolina’s grant project will create three regional pilot sites to provide an enhanced array of evidence-based services to increase access to CIE.

SARTAC Fellow: Kenneth Kelty and The Waiting Room Podcast

The Self Advocacy Resource and Technical Assistance Center’s (SARTAC) mission is to strengthen the self-advocacy movement by supporting organizations to grow their diversity and leadership. One unique way SARTAC does this is by awarding $5,000 fellowships for individuals to carry out independently designed self-advocacy leadership and policy-related projects.

One of the six SARTAC fellows for 2022 is Kenneth Kelty of Chapel Hill, North Carolina,  who applied for the fellowship with plans to use podcasting as a way to build more disability awareness. Working with the North Carolina Council on Developmental Disabilities (NCCDD), Kelty’s plan led to the creation of Meet the Need NC’s The Waiting Room, a podcast that shines a light on the ever growing Medicaid waitlist and unmet needs of people with intellectual and other developmental disabilities in North Carolina.

“After brainstorming with my mentors about opportunities to grow my professional podcasting and blogging, and reading about previous fellows who went through SARTAC, I decided to apply for the fellowship. My plans for the fellowship were to learn from a professional communications team on capturing what the guests on my show share and learning to produce and host an episode. The Waiting Room series has helped me learn more about how to host a podcast episode and exploring new content,” Kelty explained. 

A graduate of Western Carolina University, Kelty is a professional speaker, writer and disability advocate who has taught advocacy training in area high schools as well as spoken on disability history. He is the Vice President of Public Relations at Tarheel Toastmasters and volunteers as an office assistant at the Durham VA Medical Center. He is also a motivational speaker at the Carolina Institute for Developmental Disabilities (CIDD), University of North Carolina Chapel Hill.

“I would like to thank both SARTAC and NCCDD for this amazing opportunity and for believing in my mission,” Kelty added.

En Español - noviembre 2022

Audio - Highlights and Hot Topics