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.
In this month’s newsletter:
- Message from LAND, the Backbone of Meet The Need NC
- March Lunch & Learn Webinar Recap
- LENS: Lived Experience Network Speaks Blog
- 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
Collective Impact: Changing the Landscape of I/DD across North Carolina
As disability advocates, we often wonder if our messages are heard. For almost two and a half years, our Meet The Need NC collective impact initiative and LAND (Leadership Alliance for Neurodevelopmental Disabilities) have been educating and informing policymakers, and anyone who would listen about becoming more informed about the lives of individuals with intellectual or other developmental disabilities (I/DD). We have been focused on this core value: Those with lived experience should be at the table where decisions are being made about their I/DD service and support needs.
We are being heard.
Recently, Kody Kinsley, Secretary of the NC Department of Health and Human Services (NC DHHS) said that they “have a slogan, ‘nothing about us without us’, ensuring that those voices of the people we serve are at the center of our work…” (from Secretary Kinsley Announces Community and Partner Engagement Initiative video)
NC DHHS has a monthly webinar, similar to the one we have been doing for the past year called “Side by Side” for working together to better understand and improve our system. They “listen closely to one another and we will share ideas for public policy that will improve lives in North Carolina.” The goal of this webinar is to bring everyone together in one (virtual) place, and includes consumers, families, advisory groups, LME/MCOs, community members and partner organizations. They include people with lived experience. Sound familiar?
Meet The Need NC and LAND know it is essential for those with lived experience to join with professionals who stand with us, not separately. We have to do this together, and not silo ourselves.
We have brought to action the concept of all stakeholder groups working together with our March “Lunch & Learn” webinar which was part 2 of a follow-up session from our I/DD Policy Think Tank which was held late last year. Many I/DD stakeholder groups, including self-advocates and parent advocates, joined together as an I/DD Community to think through next steps for impacting system change. Please see the slides and recording of our March webinar in English and Spanish below in our following “Wrap Up” section. Also, as usual, we are including the voices of those with lived experience in our “LENS Blog” and “Putting Knowledge into Action!” articles.
Changing the landscape of I/DD in North Carolina takes all of us, and a keen understanding of issues from an authentic lived experience perspective. Thank you for being part of this groundbreaking movement.
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.
March Lunch & Learn Webinar Recap
Meet The Need NC Learning Community: Part 2 — Working Together to Bring Priority I/DD Goals to Action
On March 19, the Lunch & Learn was Part 2 of our February webinar when we shared data collected during our Fall Policy Think Tank to discuss which issues identified were the top priorities to focus on. After the webinar, our next step was to turn the identified categories into SMARTIE goals (Strategic, Measurable, Ambitious, Realistic, Time-Bound, Inclusive and Equitable). Those goals were discussed at the March Lunch & Learn webinar and those with lived experience were a large part of the discussion by providing input and asking questions. The discussion was facilitated by Linda Kendall Fields, our Collective Impact consultant, and Ann Rodriguez, Parent Advocate.
Webinar Resources
- Watch the webinar recording (English)
- Watch the webinar recording (Spanish)
- Presentation slides from the webinar
About the Host and Facilitators
Host: Elizabeth (Beth) Field, M.S. brings a lived experience perspective to all aspects of her work and life. In 2019, Beth formed LAND (Leadership Alliance for Neurodevelopmental Disabilities), an advocacy organization made up of those with lived experience, to meet the needs of those with developmental disabilities and their families. LAND is a program of the Mental Health Transformation Alliance. Beth has 30+ years of strategic communications and marketing experience with public and private organizations in the areas of health and science.
Facilitator: Linda Kendall Fields, M.Ed. is a Collective Impact Consultant and has dedicated over 35 years to building communities that are responsive to the needs and contributions of older adults, people with disabilities and families in Minnesota, Oregon, Ohio, Georgia, and North Carolina. Linda is also a member of the LAND Advisory Council.
She has been at the UNC School of Social Work in Chapel Hill since 2015 as Clinical Associate Professor and now as Director of the Cares Program. In this role, she leads a team that is dedicated to facilitating systems change with and for adults of ages. Noteworthy projects include the Rethinking Guardianship initiative, the Supported Living Action Team, the Dementia Capable NC Coalition, and NC Money Follows the Person’s Building Home & Community-Based Services through Collective Impact initiative.
Facilitator: Ann Rodriguez serves as a Parent Advocate on the LAND Advisory Council. She is the parent of a young adult with learning differences and a General Anxiety Disorder. Ann’s work intersects with her personal drive to impact policies that will strengthen the services and supports for individuals with disabilities. She is the Executive Director for the i2i Center for Integrative Health. Her primary responsibility is identifying key issues and the direction of the i2i Center’s policy work. Ann is an experienced facilitator and plays an integral part in all aspects of collaborative development. Ann values the partnerships and collaborations with all stakeholders of the MH/IDD/SUD system and works to include all stakeholders in policy making.
Ann’s early professional experience included legislative support to the U.S. Senate as well as nursing home administration. Since 1994, through her work with the NC Council of Community Programs and now the i2i Center, she further developed her skills in facilitation and policy development. Ann holds a Master of Health Administration from Tulane University and a Bachelor’s in Sociology from the University of Maryland.
LENS: Lived Experience Network Speaks
LENS, which stands for Lived Experience Network Speaks, is a blog provided by Meet The Need NC from our LENS Advisory Group. LENS includes individuals with intellectual and/or developmental disabilities (I/DD) experience, including people with I/DD, families, and caregivers with separate groups for those who speak English or Spanish.
We provide a space for them to share freely, but these opinions do not necessarily represent those of Meet The Need NC or all members of the LENS Advisory Group.
The Importance of Having a Seat at the Table
This month, we welcome two guest authors for the LENS Blog: Dr. Bill Donohue and Kenneth Kelty. Each share about the importance of and their experiences with having a seat at the table for discussions to improve the services and supports for people with intellectual and developmental disabilities (I/DD).
Message from Dr. Bill Donohue
More times than not, I have invited myself to the table. My impatience and feelings ride pretty high on my shoulders and in the case of family and friends and community with disabilities, I don’t hold back much. Those feeling only multiply when I feel there are inequities or in the case of our General Assembly, intransigence and even ignorance.
Invitation to this LENS table, however, comes with the knowledge that my feelings are known and welcome. For five years our cries of “2long 2wait” from the NC Waiver Action Team have been ignored and friends with I/DD have gone unserved. Two close friends waited 22 years, one passing away 6 months before receiving her Innovations Waiver. In five years, the list has grown from 14,000 to 17,000 – underscoring the most developmentally important years of their life. It’s not right.
Lived experience may offer wisdom to parents and adult children with I/DD, but it needn’t be on the backs of irresponsible legislators. Their delays and failure to grab a two-thirds federal match have taken away jobs and care and revenue for local communities. Everyone loses.
This table of shared stories, ideas and experience is where we find solutions, how we reach decision-makers and how, if necessary, we change the funding culture of North Carolina. Thanks for the invitation! I’m flattered to help you put a critical LENS on it.
About the author
Dr. Donohue is a long-time parent advocate from Winston Salem, member of the NC Waiver Action Team, father of a 39-year-old son with Down syndrome and muscular dystrophy. He is a retired executive director of The Special Children’s School.
Message from Kenneth Kelty
I am Kenneth Kelty, an award-winning disability advocate and speaker around higher education and self-determination across the lifespan.
By having the title of Disability Advocacy Specialist and my experiences, I have been able to participate in meetings and talk with my officials about policy and my lived experience of being a person with disabilities.
The experiences of being a SARTAC Fellow (Self-Advocacy Resource and Technical Assistance Center) has helped me grow as a panel moderator and turning my podcast episodes into conversations while asking questions. I have led national conversations around disability advocacy.
I encourage people with lived experience in all backgrounds to advocate for what they believe in at the table or when telling a personal story.
Oftentimes policymakers only hear from people with privilege and we need diversity in the disability community of all different classes.
Disability makes diversity and can happen at any point in life.
About the author
Kenneth Kelty is a motivational public speaker on his life with autism and inclusion on a college campus and in the community. He has autism and an intellectual disability. Kenneth has also spoken about ending hurtful words and equity in the school system.
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.
Developmental Disabilities Awareness Month
March is designated as Developmental Disabilities Awareness Month, a period to highlight the significance of incorporating individuals with intellectual or other developmental disabilities (I/DD) in every facet of community life. This month also presents an opportunity to acknowledge the obstacles that people with I/DD may face in their quest to be part of their communities.
DD Awareness Month was first initiated by President Ronald Reagan in 1987 and has since been recognized annually. The aim is to create an understanding, offer education about I/DD, and inspire respect for people with I/DD by emphasizing their distinct abilities and contributions to their communities.
During DD Awareness Month, an array of events and activities are organized to demonstrate how individuals both with and without I/DD can unite to build dynamic, inclusive communities. The emphasis lies in nurturing an atmosphere of understanding, acceptance, and mutual respect. Let’s all join hands to make our communities more inclusive and hospitable for all!
Having DD Awareness Month is wonderful. However, as we know, much work is left ahead for people with I/DD to do year-round. So where to begin?
Grassroots Advocacy: Where it all begins
Grassroots advocacy for individuals with I/DD is vital as it empowers those directly impacted by issues to effect change. By taking action from the grassroots level, individuals can raise awareness and educate politicians to enhance accessibility, inclusivity, and rights for the I/DD Community. Grassroots advocacy facilitates the sharing of firsthand experiences to foster empathy and comprehension among the broader population. It also emboldens those with disabilities to assert their needs and rights, rather than exclusively relying on others to champion their cause.
Advice on Becoming an Advocate
So now that we have begun this discussion, allow me to introduce myself and tell you about a powerful parent advocate in NC. Then I’ll share our tips on how to become an effective and impactful advocate.
My name is Cheryl Powell, and I’m from Wilmington, North Carolina. Despite living with cerebral palsy, I’ve relentlessly pursued my goals. After earning a social work degree from UNC-Wilmington in 2003, I devoted seven years to working as a direct support professional at Easter Seals UCP NC/VA until 2012. Currently, I continue this role at Community Based Care-Lindley in Wilmington, while also serving as Co-chairperson of Lived Experience Network Speaks (LENS). I joined the North Carolina Council on Developmental Disabilities (NCCDD) as a member in 2015 until 2023 during which time I twice served as vice-chairperson. In addition, I led the NC Empowerment Network and am actively involved in several organizations.
Charlean Mapson is a parent advocate who has a powerful impact in NC and is a member on the NCCDD. She will be joining me in a podcast this month to discuss the importance of having people with lived experience at the table where service and support decisions are being made about them. Living in Wilmington, Mapson works for the African Methodist Episcopal (AME) Zion Church and is currently the pastor at Price Cathedral AME Zion Church. She has 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. As the mother of a son with autism, Mapson understands the need for more parent advocates but realizes that parents struggle to be able advocate due to a lack of resources and support. Her main challenge lies in establishing parent support groups for individuals with I/DD, emphasizing the importance of grassroots participation from citizens.
So why did Dr. Mapson and I get involved in this world of advocacy?
Self and community advocacy are essential for people with disabilities and families as it allows them to voice their needs and rights. By advocating for themselves, individuals with I/DD can ensure their voices are heard and their unique perspectives are considered when decisions affecting them are made. Community advocacy also plays a crucial role in fostering a more inclusive society where everyone, regardless of their abilities, is accepted and supported.
With so many issues that need to be addressed, how can individuals make a dent in this huge system of disability?
By finding your passion!
When deciding on your advocacy focus for people with disabilities, consider the following points:
- Your Personal Connection: Advocacy often originates from a personal place. Perhaps you or a loved one has a disability. This personal connection can drive your passion and provide unique insights.
- Identify the Need: Observe the disability community around you. What are the most urgent issues? Identifying a need can help direct your advocacy efforts.
- Consider Your Skills and Interests: You will be most effective in your advocacy if it aligns with your skills and interests.
- Research and Learn: The more you understand about disability issues, the better advocate you can be.
- Listen to the Community: Effective advocacy stems from listening to the community you are advocating for.
Remember, advocating for disability rights involves challenging stereotypes, fighting for equal opportunities, and promoting inclusivity.
Here are some ways to advocate for yourself and others:
- Education: Understand different types of disabilities and the different challenges individuals face based on their disability.
- Speak Up: If you witness or experience discrimination, it’s crucial to speak up.
- Raise Awareness: Share your experiences and knowledge with others.
- Get Involved in Advocacy Groups: Join organizations that advocate for the rights of people with disabilities.
- Support Inclusive Policies: Advocate for policies that promote equality and inclusivity for people with disabilities.
- Promote Accessibility: Advocate for accessibility in all aspects of life.
- Self-Care: Remember to take care of your mental health.
Remember, change is often slow, so don’t be disheartened if progress seems sluggish. Every effort you make to advocate for yourself and others makes a difference.
In closing, I’d like to share an article written by parent advocate Ray Hemachandra who has used his and his son’s story to inspire change — a great example of advocacy in action! Read the article here: NC’s Innovations Waiver is lifesaving for 14k disabled, but 17k others languish on waitlist (The Carolina Journal)
Register for the April Lunch & Learn Webinar
Me and My Legislator: “Oh, the Places You’ll Go!”
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, April 16, 2024, from 12pm – 1pm. The topic is Me and My Legislator: “Oh, the Places You’ll Go!”
About the webinar: “Oh, the Places You’ll Go!” by Dr. Suess is a children’s book that encourages and inspires readers to embrace life’s challenges and adventures. In April, we join Meet The Need NC’s individuals with I/DD lived experience advocates with our state’s General Assembly to discover the “whys” behind their advocacy, and their personal challenges and adventures along the way. We are inviting members from both sides of the aisle. With elections later this year in November, we need to all find common ground through educating and informing about the service and support issues together that are paramount to our North Carolina I/DD Community.
As a reminder, we do not lobby.
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 Initiative Update
March was a busy time to extend messages across the state from a lived experience perspective through our monthly webinar, newsletter, presentations, exhibits, and social media. Through all these communication vehicles, we celebrate the voice of those who have intellectual or other developmental disabilities (I/DD) and their families/caretakers. This is our point of view, our perspective, for all we do.
Presentations
Collaboration continues to be a key value of our Meet The Need NC collective impact initiative. Meet The Need NC and LAND were included in two different meetings in March. We exhibited at the third annual Legacy Speakers Series sponsored by the University of North Carolina at Chapel Hill School of Social Work. This year’s event focused on “Thriving with I/DD Across the Lifespan” with many Meet The Need NC Advisory Collaborative members in attendance and on panels. Read more here: Legacy Speakers Series addresses ways to empower individuals with intellectual or developmental disabilities
We also gave a presentation at the I/DD Summit for over 30 I/DD nonprofit leaders sponsored by another collective impact initiative, Work Together NC in Chapel Hill.
Our Spanish speaking LAND Advisory Council member, Jessica Aguilar brought many from her Hispanic community supper groups members to the Spanish translated movie, “Unmet” in Charlotte. “Unmet” is a film commissioned by the North Carolina Council on Developmental Disabilities. Jessica has twin sons with I/DD and is an amazing advocate.
Meet The Need NC is funded by the North Carolina Council on Developmental Disabilities. Through that funding, we are focused on educating and impacting policy around five categories which we are using as a guide to create an I/DD informed Services Roadmap. The first categories we are placing on our roadmap are those we have heard about from you as the most important:
- Innovations Waiver
- Registry of Unmet Needs (RUN or waiting list)
- Medicaid, 1915(i) Services
- Direct Support Professional (DSP) Workforce Shortage.
The Road Map will provide useful information for those living with I/DD about services and supports and will be written by those with lived experience with navigating our NC systems. Stay tuned for more information about our I/DD service and supports Roadmap.
Upcoming I/DD Conferences of Interest
Join Disability Rights North Carolina (DRNC) in celebrating the 25th anniversary of the Olmstead decision at its annual statewide conference: It’s ON! Olmstead Now in NC. In commemorating this landmark legal decision, DRNC will reflect on two and a half decades of advocating for the rights of people with disabilities to live and receive services in their community. More information can be found here: https://disabilityrightsnc.org/event/2024-disability-advocacy-conference/
Other Information
New report: Report on the Economic Impact Study of the I/DD Community
Meet The Need NC is all of us who are trying to meet the service and support needs of those with I/DD and their families across the state.
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!