October 2021 - Highlights and Hot Topics
Letter from the Executive Director
What value, or what super-power, do you have because of your disability or condition? That is the question Chris Hendricks asked at the first virtual event of the North Carolina Self-Advocacy Discussion Series. Self-advocates responded. A few of their many answers were: the ability to overcome obstacles, the ability to be noticed, and the ability to better use other senses.
It is National Disability Employment Awareness Month. We know that people with disabilities are a critical asset to employers. A 2018 article from the Journal of Occupational Rehabilitation found that the benefits of hiring people with disabilities included higher profitability, reduced turnover, increased retention and punctuality, and increased competitive advantages.
Hundreds of people from across North Carolina attended a series of Employment and Transition webinars hosted by North Carolina Council on Developmental Disabilities (NCCDD) and Allan Bergman. This large turnout demonstrated the passion and interest North Carolina’s intellectual and/or other developmental disabilities (I/DD) community has in increasing employment and transition opportunities.
This is an important time for people with disabilities to find work and thrive in the workforce. Employers in many of our communities are desperate to find employees. Still, numerous obstacles exist for people with disabilities to work.
One obstacle is that lived experience is often not valued by employers in hiring decisions even in systems that serve and support the disability community. Lived experience is the experience someone gains from his or her personal experience in the world. Individuals with disabilities and family members have a lot of lived experience. Wouldn’t it be great if that lived experience gave individuals and family members a competitive edge in getting a job? This would be particularly positive when state agencies, Local Management Entities-Managed Care Organizations (LME-MCOs), and others seek to hire individuals who work with the disability community.
Often the best mentors in life are those who have traveled a similar journey and have overcome similar obstacles. For this reason, NCCDD recently piloted a Peer Mentor training. Peer Mentors are individuals with I/DD who support others with I/DD in their lives and in navigating through issues they have confronted in their lives.
The Peer Mentor training was done in partnership with Kelly Friedlander, Optum Health, the National Association of Councils on Developmental Disabilities, and Alliance Health. The pilot training was such a success that we soon will be recruiting a second cohort for training.
Our vision, though, is not just to train Peer Mentors, but to have Peer Mentors employed across the state. This is just one part of our overall work and advocacy to ensure North Carolina is a leader in employing people with disabilities in meaningful work.
Talley Wells, Executive Director
Public Policy Update as of October 13
STATE UPDATE
Following the approval of their separate budgets, a conference committee was appointed to work out differences between the House and Senate. This budget process continues. Legislative leaders sent a draft of a budget to the Governor, which was returned with additional requests from the Governor’s office. Areas where there’s no agreement include Medicaid expansion, tax cuts, and education/teacher’s salaries. The negotiations are ongoing, and we hope to see a budget by the end of October. As described in the last edition of Highlights and Hot Topics, we expect to see Innovations Waiver slots in the budget, as well as funding to increase pay for Direct Support Professionals.
There is a bill related to intellectual and other developmental disabilities (I/DD) that advocates continue to track. SB593 Special Education Due Process Hearings is a bill that would streamline the appeals process related to Individualized Education Plans (IEPs). This would make it easier for families who are seeking appropriate education for their children. It passed the Senate earlier in the legislative session. The language from this bill was included in the Senate budget but not the House budget, so advocates are hoping it could also pass the House. There is some opposition to the bill from the school boards, and it has been pulled from the calendar this week.
Tailored Plans
The six Local Management Entities-Managed Care Organizations (LME-MCOs) who will provide the Tailored Plans continue to work with the Department of Health and Human Services (DHHS) in order to meet requirements and pass a Readiness Review. This goal is for the LME-MCOs to be ready to launch Tailored Plans on July 1, 2022. There are concerns about the timeline and the ability to ensure network adequacy.
AMH/CMAs
A critical part of Medicaid transformation is Advanced Medical Home Plus (AMH+) practices/Care Management Agencies (CMAs), which will provide coordination and support for people enrolled in the Tailored Plans. The NC DHHS has conducted desk reviews of round one AMH+ practices/CMAs provider applications and advanced 54 providers to the site review stage. The certification candidates that advanced on to the site review phase are listed in the September issue of Highlights and Hot Topics.
All of the agencies that pass the site review and are approved will need to begin recruiting staff to provide the care management required in the Tailored Plans. There are concerns about the workforce available to fill these positions, which require at least a bachelor’s level of education, across the state. There is discussion among advocates about changes to the current job requirements to include lived experience to expand and diversify the workforce.
Home and Community-Based Services (HCBS) 1915(i)
North Carolina is working on developing a State Plan HCBS benefit. This is important because it would allow Medicaid-eligible people to access community supports without being on the Innovations Waiver. The plan is to transition the current B(3) services (such as community living, respite, supported employment) into 1915(i). The state is in the process of developing policies around eligibility, services provided and any limitations. The state plans to launch this at the same time as the Tailored Plans.
Olmstead Plan
A draft of the Olmstead Plan was released on October 12. The state will be accepting feedback through October 27, and the final plan is scheduled to be released in December. NCCDD hosted a virtual forum on October 18 to discuss the draft plan and offer the opportunity for feedback.
North Carolina’s draft plan includes 11 priorities:
- Strengthen individuals’ and families’ choice for community inclusion through increased access to home and community-based services and supports.
- Address the Direct Support Professional crisis. Implement strategies to recruit, train, and retain the frontline staff who provide those daily services that allow people to live, work, and thrive in their communities.
- Transition people to more independent living situations from placements in institutional and segregated settings, and provide needed supports in the community for individuals who are at risk of entering these settings.
- Increase opportunities for supported education and pre-employment transition services for youth and competitive integrated employment opportunities for adults with disabilities.
- Increase access to safe, decent, and affordable housing.
- Address gaps in services.
- Explore alternatives to guardianship.
- Address disparities in access to services.
- Increase input to public policymaking from families and individuals with lived experience.
- Increase access to transportation.
- Use data for making quality improvements in the provision of services and for advancing the achievement of the plan’s goals.
The goal of the plan is to create a path forward to ensuring that people with disabilities can live full lives in their communities.
FEDERAL
Congress continues to work on legislation as part of the budget reconciliation, or Build Back Better Agenda, that could greatly affect the lives of people with disabilities and their families. The original $3.5 trillion plan included investments in Medicare, providing free community college, paid family leave, fighting climate change, as well as expansion in Medicaid HCBS. There is no agreement on the package yet, and some items may be cut from the original plan.
To urge Congress to keep HCBS in the plan, disability rights activists and care workers held a 24-hour storytelling vigil on October 6 to urge Congress to pass funding for HCBS. The 24-hour vigil was held outside of the US Capitol building to demand funding for home care services in President Biden’s “Build Back Better” package before Congress. The group delivered over 7,500 stories collected by The Arc of the U.S. from individuals impacted by the lack of HCBS. Senator Bob Casey (D-PA) closed out the vigil outside the Capitol by imploring his colleagues in Congress to vote “yes” on the transformative Build Back Better plan that could “put the country on the road to having the best caregiving in the world.”
Guidance on IEPs
On September 30, the Education Department released guidance around the development of IEPs in the context of COVID-19. Among other items, the document affirms that, regardless of the COVID-19 pandemic or the mode of instruction, children with disabilities are entitled to a free and appropriate public education (FAPE), and infants and toddlers with disabilities and their families are entitled to appropriate statewide early intervention services.
Additionally, the document asserts that state and local laws, regulations, or policies that limit the ability of IEP teams to address school-related health needs of a child with a disability (for example, COVID-19 risk-reduction measures such as mask-wearing), would be a violation of the Individuals With Disabilities in Education Act (IDEA).
NCCDD’s New Five-Year State Plan for 2022-2026
The NCCDD new Five-Year State Plan (2022-2026) was adopted by the 40-member Council and approved by the Administration on Intellectual and Developmental Disabilities (AIDD). Implementation began on October 1, 2021.
The plan is a comprehensive review of major service systems and issues in North Carolina with goals, objectives, and specific activities that will be implemented to bring about change.
The new plan’s goals, to be achieved by 2026, include:
- Increase financial security through asset development for individuals with I/DD.
- Increase community living for individuals with I/DD.
- Increase advocacy for individuals with I/DD.
The Five-Year State Plan also guides the Council regarding how staff and fiscal resources are allocated. You may read the entire new plan here.
New Council Member Spotlight: Charlrean Batten Mapson
North Carolina Governor Roy Cooper has announced the appointment of Dr. Charlrean Batten Mapson to NCCDD. Mapson will join the 39 other individuals on the Council who work to identify problems facing the I/DD community.
A Wilmington resident, Dr. Mapson is employed by the African Methodist Episcopal (AME) Zion Church and is currently serving as the pastor at Price Cathedral AME Zion Church in Wilmington. She holds a Bachelor of Science in Chemistry and Engineering from Clark Atlanta University, a Master of Divinity in Theology from Hood Theological Seminary, and a Doctor of Ministry in Theology from Duke University. She currently serves on the New Hanover County Smart Start Board.
A parent of a son with Autism, Dr. Mapson feels there is a need for more parent advocates but points to a lack of resources and supports for these parents. She feels the involvement of an average citizen like herself on the Council is one of the best things NCCDD is doing.
New Staff Member Spotlight: Pam Hunter Dempsey
Pam Hunter Dempsey joined NCCDD as its newest Systems Change Manager with responsibilities for multiple initiatives including those dealing with communications, data, and reporting on the new Five-Year State Plan.
Pam has worked in a variety of publicly funded service provider positions, as well as a program manager, special education teacher, adjunct professor in post-secondary education and in transition services. She holds a bachelor’s degree in Psychology from Wake Forest University and a graduate degree in Public Administration from the University of Louisville.
Originally from South Carolina, Pam has a 24-year-old daughter with I/DD whom she calls “her teacher.” Pam is passionate in advocating for people with disabilities, explaining that “the journey required to support a loved one's needs is not an easy one nor is it well laid out.” Her journey, she says, “has compelled me to provide support and bring others along with me. I want to be able to open conversations to a broader audience and help others engage.”
