Welcome to Meet The Need NC’s monthly newsletter featuring what the initiative is up to and how you can join our efforts to meet the service and supports needs of North Carolinians with intellectual or other developmental disabilities (I/DD) and their families.
This month’s topic: North Carolina I/DD General Assembly Champions
- Message from LAND, the Backbone of Meet The Need NC
- North Carolina I/DD Legislative Caucus to be held on May 14
- April Lunch & Learn Webinar Recap
- Listen to our latest podcast! The Waiting Room: Nothing About Us Without Us
- Hear. Share. ACT! Put Your Knowledge into Action
- Register for the April Lunch & Learn Webinar
- Meet The Need Initiative Update
- Let’s get social! Stay in touch with us on Facebook, Instagram and more!
Message from LAND, the Backbone of Meet The Need NC
As an intellectual and other developmental disabilities (I/DD) Community, we cannot make change alone. We need policymakers to be more informed about the issues that influence our ability to live the lives we choose based on the choices available to us – or the dream of those that could be. We are on this journey together.
In April, we joined together with I/DD champions in the North Carolina legislature and two experienced self-advocates in an informal roundtable discussion. We talked about the “whys” behind our advocacy. We learned about ways we, as those with I/DD lived experience, can most effectively approach state legislators to inform and educate them on the issues most important to our I/DD Community.
We thanked NC General Assembly members, Rep. Sarah Crawford (D – District 66), Sen. Lisa Grafstein (D – District 13), Rep. Donna White (R – District 26), and Sen. Mike Woodard (D – District 22) for their advocacy for our I/DD Community in the General Assembly. We also discussed the importance of getting all stakeholder groups, including policymakers, more I/DD informed to meet the ongoing individualized, service and support needs throughout the lifespans of those with I/DD and their families in North Carolina.
We highlighted the importance of meeting the needs of those on the Registry of Unmet Needs (RUN) waiting list as they wait for their Innovations Waiver slot to become available, and the need to focus intently on growing and sustaining a direct care workforce to enable more Innovations Waiver slots in the future to make community living choice more of a reality for those who select this option. We asked attendees to put their issues in the chat so the legislators could be aware of their issues. Our I/DD champions were forwarded the chat comments after the webinar.
Please take the time to listen to the recording of the webinar if you were unable to attend to hear the synergy of our roundtable participants toward making change. Join us next month for our next lunch & learn webinar: “Double Whammy! Lifting the veil on the I/DD Direct Workforce shortage, and its impact on North Carolina’s aging family caregivers.”
We are in this together. Our dialogue must continue and grow beyond these beginning discussions.
Elizabeth Field, M.S.
Program Director
Meet The Need NC is an initiative to change the intellectual and other developmental disabilities (I/DD) landscape across the state and is funded by the North Carolina Council on Developmental Disabilities. Meet The Need NC is driven by the Leadership Alliance for Neurodevelopmental Disabilities (LAND), a program of the 501c3 nonprofit, Mental Health Transformation Alliance (MHTA). Learn more about LAND at https://mentalhealthtransformationalli.godaddysites.com/land.
North Carolina I/DD Caucus to be held on Tuesday, May 14th
An Intellectual and Developmental Disabilities (I/DD) Legislative Caucus Listening Session will be held on Tuesday, May 14 from 12:00 noon to 2:00 p.m. It will be in the Auditorium of the 3rd Floor of the Legislative Building at 16 West Jones Street, Raleigh, North Carolina. Speaker slots are being filled, but North Carolinians with I/DD and family members can attend. You can register to attend here.
Attendees should try to schedule a visit with Legislators before and after the event. You can find your Legislators on the General Assembly website by entering your address and clicking NC Senator and NC House. You can reach out to the Legislative Assistant to request a meeting with your Legislators on that day by clicking on the Legislative Assistant’s name to send an email.
April Lunch & Learn Webinar Recap
Me and My Legislator: “Oh the Places You’ll Go!”
During our April Lunch & Learn webinar, several members of the North Carolina General Assembly — Rep. Sarah Crawford (D – District 66), Sen. Lisa Grafstein (D – District 13), Rep. Donna White (R – District 26), and Sen. Mike Woodard (D – District 22) — joined by advocates with I/DD and a family member for a roundtable discussion. Those attending the webinar were also part of the conversation by providing their input and questions using the webinar’s chat feature.
Did you miss the webinar? No problem! Watch the webinar recording here. Learn more about each of the General Assembly speakers in our Put Your Knowledge into Action article.
Listen to our latest podcast! The Waiting Room: Nothing About Us Without Us
Join “The Waiting Room” host Kenneth Kelty and his guests Cheryl Powell and Dr. Charlene Mapson as they discuss the importance of advocating with the mindset of “nothing about us without us.”
Cheryl is a person with an intellectual or other developmental disability (I/DD) and served as a member of the North Carolina Developmental Disabilities Council (NCCDD) for eight years. Dr. Mapson is a parent who has a son with Autism and a current NCCDD council member. Both share about their extensive experience with not only advocating for their self or their family member, but also advocating for change to improve the lives of everyone in the I/DD community.
Listen to the podcast below. You can also find and subscribe to the podcast on Spotify.
About The Waiting Room
The Waiting Room is a podcast that shines a light on the ever-growing Medicaid waitlist and unmet needs of people with intellectual and other developmental disabilities (I/DD) in North Carolina. The podcast aims to focus on these issues by educating, informing and building a community along the way. Kenneth Kelty, an award winning motivational speaker and activist, is the host.
Hear. Share. ACT! Put Your Knowledge into Action!
The way Meet The Need NC works can be summed up in three words: Hear. Share. Act.
- The “Hear” comes from attending our monthly webinars.
- The “Share” comes from the information we provide in our monthly newsletter, and on Facebook and Instagram.
- And the “Act” is what this column is about.
This is where we provide information on an issue to educate and inform you about how you can be a part of making a difference. The issues we choose relate to our Vision and Mission for individuals with intellectual or other developmental disabilities (I/DD) and their families in North Carolina through a common agenda.
Our April Lunch & Learn welcomed several legislators who we call “I/DD Champions” due to their support for positive change for people with I/DD to live their lives the way they choose and with the services they need. Take a moment to read about each of the legislators’ commitment and accomplishments below.
Take action! As you read about these I/DD Champions, we challenge you to talk with your legislators about what is important to you and the I/DD Community. Doing so will inform and educate them on the priority issues to tackle with the General Assembly. Meet them in person. Send them an email. Write them a letter. Make them an I/DD Champion! You can find your NC legislators here: https://www.ncleg.gov/FindYourLegislators
Rep. Sarah Crawford (D – District 66)
Representative Sarah Crawford serves House District 66, which includes parts of Wake County. Prior to serving in the NC House of Representatives, Crawford served as a member of the NC Senate representing parts of Wake and Franklin counties. As the daughter of a public school teacher and a state employee, Crawford understands the value of hard work and the importance of a quality education.
After graduating from NC State University, Crawford has dedicated her career to serving the people of North Carolina through her work in nonprofits in the areas of health and human services and higher education. Currently, Crawford serves as Chief Executive Officer of TLC (Tammy Lynn Center for Developmental Disabilities) in Wake County. Prior to that she served as National Director at Single Stop, helping families work towards the American Dream by connecting them to existing resources that help put them on a path to economic stability and prosperity.
During her time in the NC Legislature, Crawford has been a champion for healthcare access and affordability, children and adults with I/DD, public education, and economic justice. Crawford has introduced legislation to support working families through paid parental leave, expanded access to free income tax return assistance programs, and tax credits for veterans. Additionally, she has worked in a bipartisan way to pass legislation to expand and protect services for individuals with disabilities.
Crawford has been active in her local community serving on the Ministry Leadership Team at her church, the Board of Advisors for the NCSU School of Public and International Affairs and is a former board member of a nonprofit that serves victims of domestic violence. Sarah and her husband Dan live in Raleigh where they raise their two daughters, Emily and Sarah, and four dogs.
Sen. Lisa Grafstein (D – District 13)
Senator Lisa Grafstein has been a civil rights lawyer since 1995, including the last 12 years working on behalf of people with disabilities. She has received a number of professional awards, including the Gwyneth B. Davis Public Service Award from the NC Association of Women Attorneys and the Champion of Justice Award from the Barbara McDowell and Gerald Hartman Foundation. Grafstein is a graduate of Northwestern University and received her law degree from UNC – Chapel Hill School of Law.
In 2022, she was elected to the NC Senate to serve District 13 in Wake County and serves on the following committees: Judiciary; Agriculture, Energy, and Environment; State and Local Government; Appropriations on Justice and Public Safety; Legislative Ethics; and the Joint Legislative Oversight Committee on Justice and Public Safety.
Rep. Donna McDowell White (R – District 26)
Representative Donna McDowell White was elected to her first term in the NC House of Representatives in November 2016 and is currently serving her fourth term representing the citizens of House District 26. She is the first woman from Johnston County to be elected to this role. Her strong commitment to public health, mental health and the overall well-being of NC citizens is demonstrated through her committee and volunteer work.
She currently serves as Chair of the Health Committee and as Chair of the Appropriations for Health and Human Services Committee. In addition, White is a Vice-Chair of the Appropriations Committee. She is also a member of the Rules/Operations of the House, Education & Community Colleges, Environment, and Local Government Committees. Bi-cameral appointments include serving on the Joint Legislative Oversight Committee on Health and Human Services, Women in STEM and the Joint Legislative Oversight Committee on Access to Healthcare and Medicaid Expansion.
As a Registered Nurse, she has worked as a public health nurse in communicable disease, school health, pediatrics, and home health. She was the statewide Nurse Consultant for HIV/AIDS, Migrant Health and served as the Nurse Consultant for a national Case Management Demonstration Project for seven years that became the model of modern case management.
Until her retirement on February 1, 2017, White was the Home Care Consultant and Elder Rights Nurse for the Division of Aging and Adult Services at the NC Department of Health and Human Services. White is a member of the North Carolina Nurses Association, the American Nurses Association and Past President of the Johnston County Nurses Association. She was named one of the Great 100 Nurses in North Carolina.
Sen. Mike Woodard (D – District 22)
Senator Woodard has served in the NC Senate from the 22nd district since 2013. A member of the Democratic Party, he represents most of Durham County. Before being elected to the state Senate, Woodard served on the Durham City Council from 2005 to 2012. Since 1996, Woodard has been an administrator at Duke University and the Duke University Health System. He has served as a trustee of the Durham Arts Council as well as its president.
Register for the May Lunch & Learn Webinar
Double Whammy! Lifting the veil on the I/DD DSP Workforce shortage, and its impact on North Carolina’s aging family caregivers
Join us on the third Tuesday of each month at noon to listen to discussions on new topics brought to you by thought leaders in the intellectual or other developmental disabilities (I/DD) community.
Our next Lunch & Learn will be on Tuesday, May 21, 2024, from 12pm – 1pm. The topic is Double Whammy! Lifting the veil on the I/DD DSP Workforce shortage, and its impact on North Carolina’s aging family caregivers.
About the webinar: While we wait for an adequately sourced and trained Direct Support Professional (DSP) workforce for people with I/DD and to help families support them, family caregivers are aging. For those who have embraced the dream of community-based living for their children, the path toward reality is lined with an aging population of family caregivers. Will their child get an Innovations Waiver slot before they can no longer care for their child? Even if they do get a slot, will there be an adequate supply of DSPs to be there for their child’s lifespan?
The continued (seemingly no end in sight) DSP workforce shortage has grave implications for family caregivers. Join us in May as we will lift the veil on the impact of the DSP workforce shortage and explore the “double whammy” experienced by I/DD caregivers who must learn to also look after their own physical and mental health while they wait.
Register here!
Throughout our monthly webinar series, Meet The Need NC aims to create a basic understanding of the unmet needs of those living with I/DD in North Carolina. For more information, including our 2024 webinar schedule, go to our Lunch & Learn Webinar Schedule & Registration web page.
Meet The Need NC Updates and Resources
What is Meet The Need NC all about? Download our MTN NC infographic to learn about our collective impact and how we work together with a common agenda to achieving our mission to meet the need for North Carolinians with I/DD and their families.Meet the Need NC is driven by the Leadership Alliance for Neurodevelopmental Disabilities (LAND), a program of the 501c3 nonprofit, Mental Health Transformation Alliance (MHTA).
Updates from MTN NC
Meet the Need NC, an initiative of LAND, hosted two very helpful follow-up Policy Think Tank webinars in February and March. Attendees shared information and comments in the chat during our discussions about our 2024 Work Plan goals. Thank you to all who attended.
In April, we had our quarterly Advisory Collaborative meeting to review all our data, confirm the goals and develop our next steps. Our Advisory Collaborative includes I/DD policy advisors, community engagement professionals, and those with I/DD and families. It has representation across disabilities, region, level of need, and lifespan. Our 2024 goals are around these three areas: accessible information; Innovations Waiver waitlist; and Direct Support Professional (DSP) messaging.
Using our collective impact framework, in May we will be starting task forces for each of the three goals we have identified as a priority. Each task force will develop three actions to complete by the end of the calendar year. These actions must be SMARTIE (Strategic, Measurable, Ambitious, Realistic, Time-bound, Inclusive, and Equitable).
Our LENS (Lived Experience Network Speaks) advisory group has already been working on actions for the accessibility information goal of our Work Plan. They have planned two digital roadmaps/pathways: (1) one educating about the path toward community living, and (2) the other being an advocacy pathway for making community living a reality for those with I/DD that want that choice.
Latest News and Resources for the I/DD Community
North Carolina I/DD Legislative Caucus to be held on May 14
An Intellectual and Developmental Disabilities (I/DD) Legislative Caucus Listening Session will be held on May 14 from 12:00 noon to 2:00 pm. It will be in the Auditorium of the 3rd Floor of the Legislative Building at 16 West Jones Street, Raleigh, North Carolina. Speaker slots are being filled, but North Carolinians with I/DD and family members can attend. You can register to attend here.
Attendees should try to schedule a visit with Legislators before and after the event. You can find your Legislators on the General Assembly website by entering your address and clicking NC Senator and NC House. You can reach out to the Legislative Assistant to request a meeting with your Legislators on that day by clicking on the Legislative Assistant’s email address.
State Budget Update
- Governor Cooper’s Recommended Budget Adjustments: 2024-25 (Released April 2024)
Innovations Waiver and the Registry of Unmet Needs (RUN) Waitlist
- Samantha R v. NC update:
- Press release announcing litigation agreement
- Frequently Asked Questions about the settlement
- North Carolina Olmstead Plan 2024 – 2025: Released April 2024
- HCBS Sustainability Summit: Final report and a technical supplement from the October 2023 summit
- Inclusion Connects: New website from NCDHHS
Medicaid Tailored Plan Update
- Tailored Plan: Information about the launch on July 1, 2024.
- Confidence high that delayed Medicaid plans will finally launch on July 1: Article from NC Health News, April 4, 2024
- NCDHHS releases Tailored Plan bilingual toolkit
- Tailored Care Management
1915(i) Services
Direct Support Professional Workforce Shortage
- What is a direct support professional? (University of Minnesota)
Upcoming Webinar
Topic: Family Navigation: Cultural Considerations When Working With Families Who Have Children With Disabilities
- Date/Time: May 22, 2024 9:00 AM – 12:15 PM
- Location: Online
- Held by: Wake AHEC
- Join link: Register here
Let’s get social!
Want to stay informed about issues that are important to you and your community? Follow us and subscribe to our newsletter! Here’s where to find us:
- Follow us on social media on Facebook and Instagram.
- View our Lunch & Learn webinar recordings and other video clips on our YouTube channel.
- Listen to our podcast, The Waiting Room, hosted by Kenneth Kelty.
- Visit our website for updates, resources and links to other helpful websites.
- Join our email list to receive upcoming webinar registration information and our monthly newsletter.
Most importantly … share this information! Encourage others to subscribe to our newsletter and follow us on social media so they, too, can be part of Meet The Need’s vision and mission to change the I/DD landscape across North Carolina through a common agenda. Together, we can make it happen!