In this edition of Meet The Need NC eNews:
- Message from LAND, the Backbone of Meet The Need NC
- November Lunch & Learn Wrap Up: I/DD Workforce and Mental Health
- Register for January’s Webinar: I/DD and Schools
- LENS: Lived Experience Network Speaks Blog
- Did you know? Information you can use!
- Let’s get social! Stay in touch with us on Facebook, Instagram and more!
Message from LAND, the Backbone of Meet the Need NC
Transforming the I/DD LANDscape in North Carolina
The mission of our Meet the Need NC initiative is to meet the service and support needs of those with Intellectual and other Developmental Disabilities (I/DD) in North Carolina. So, when we hear repeatedly about a co-occurring conditions service/support gap that impacts many in our I/DD community, we need to point it out to inspire change.
During our November Hear. Share. Act. Lunch & Learn webinar, “I/DD and Mental Health,” we learned:
- 30-40% of people with I/DD have a psychiatric disorder compared to 27% of the general population.
- Many are under-diagnosed, not treated, or inappropriately diagnosed.
- Symptoms of mental illness often present differently in individuals with I/DD.
- Determining an accurate psychiatric diagnosis becomes especially difficult as the level of intellectual functioning declines.
Historically, I/DD, mental health (MH), and substance use disorders (SUD) services have existed in different silos, both in funding and practice. From the start in school, children are placed in “siloed baskets” for accommodations. Parents, who inherently view their children through a whole child lens in the earliest years, then must rely on a system where their child falls into one diagnosis area or another. And what if a person had MH, SUD and I/DD? Which one takes the top spot that dictates care?
We began our November webinar by asking attendees if they had any difficulty finding providers who understood both I/DD and MH issues. All responses were as expected – “Yes!” And many followed up with questions wondering where to find I/DD providers in North Carolina that understood co-occurring conditions.
As people with I/DD who have lived experience, we know that for a long time, with great frustration, those with an I/DD diagnosis in North Carolina have had difficulty finding providers to diagnose, understand, and treat their MH needs. Our system tends to look through one lens or another. Clearly there is an existing service gap.
We need a health care system that is more I/DD and MH/SUD informed. This must include individuals and families, and the systems and providers that serve them. This will require more intentionally helping our entire system to be more I/DD and MH/SUD informed by requiring cross training and removing barriers to integrated supports. Let us bridge that gap together.
Our ASK this Month
Please review the slides or listen to the recording of November’s presentation from two seasoned advocates who have experience in I/DD and MH. The links to these are provided in this newsletter. Then forward the presentation to others to highlight the need for health care that understands how to treat those with I/DD or MH/SUD who have co-occurring needs.
We look forward to seeing you in the new year for our monthly webinar series and information sharing through our monthly newsletter. In the meantime, wishing you all health and peace. We are ever grateful for you joining us in this journey to change the I/DD landscape in North Carolina to meet the service and support needs for all.
Elizabeth Field, M.S.
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.
November HEAR. SHARE. ACT. Lunch & Learn Recap
Topic: I/DD and Mental Health
On November 21, 2023, the topic of the Meet The Need HEAR. SHARE. ACT. Lunch & Learn webinar series was I/DD and Mental Health. The presenters were Jennifer Mahan, Director of Public Policy from the Autism Society of North Carolina and Jill Hinton, PhD, Clinical Psychologist. There was also a panel of individuals with lived experience: RV Kuser, Marlene Kuser and Diane Coffey.
- Watch the webinar recording (English)
- Watch the webinar recording (Spanish)
- View the presentation slides
- Answers to questions asked during the webinar
About the presenters
Jennifer Mahan has worked for the Autism Society of North Carolina since October of 2010. Her role includes legislative, grassroots, and one-on-one advocacy supporting ASNC’s public policy targets. Jennifer’s 30 years of experience in health and human services have focused on consumer advocacy, information and referral programs, and public policy related to developmental disabilities, mental health, addictive disease, health care, and low-income benefits programs. She has served as Chair of several statewide advocacy coalitions and currently serves as past chair the Developmental Disability Consortium, 30 organizations advocating for the rights, opportunities and responsibilities, of individuals with developmental disabilities; and as co-chair of the Public Policy Committee of The Coalition, 40 organizations advocating for the needs of individuals across developmental disabilities, addictive disease, and mental health disorders.
Jill Hinton, Ph.D. is a Clinical Psychologist with over 30 years of experience working with people with intellectual disabilities, autism spectrum disorders, and mental illness. Dr. Hinton is the Clinical Director for The Center for START Services where she provides consultation and training across the country, ensures clinical integrity in START practices and training, and facilitates a monthly practice group for START program clinical directors. During her career, she has worked with the Autism Society of NC, and The Arc of NC, and Easter Seals UCP in provision of supports to individuals and families. She continues to provide clinical consultation to NC START which provide crisis intervention and prevention supports to individuals with developmental disabilities and co-occurring behavioral health issues. Dr. Hinton and Anne LaForce, LPA provide consultation and training on intellectual and developmental disabilities, autism spectrum disorder, mental health issues in people with IDD, trauma informed care, trauma and grief in people with IDD. and a variety of other topics. Dr Hinton obtained her B.S. in psychology from North Carolina State University and her Ph.D. in psychology from the University of North Carolina, Chapel Hill.
Register for January's Webinar: I/DD and Schools
It’s been a great year for our Hear. Share. Act. Lunch & Learn Webinars with interesting and informative presentations on many topics! We appreciate all who attended throughout the year and hope you are enjoying the series.
We will not have a Lunch & Learn in December, but we will resume our monthly webinars on Tuesday, January 16 from noon to 1PM to discuss I/DD and Issues in the School Setting.
Learn more about the Hear. Share. Act. Webinar series, including access to recordings of our past webinars and the 2024 webinar schedule.
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.
A Lifelong Quest for Ways to Overcome Misperceptions
This month’s guest blogger is R.V. Kuser.
My name is R.V. Kuser. I have been living with a host of neurological and behavioral issues my entire life. I live with autism, schizophrenia and intellectual or other developmental disabilities (I/DD). You may be thinking that the poor guy has so many things against him. Let me give you some more information about myself.
I have dealt with many kinds of obstacles in my life. They were thought-provoking but not insurmountable. My progress towards managing in a world full of overwhelming stimuli and turmoil came with small incremental growth. This process took many years. I had help from family and the influence of teachers along the way. In addition to family and teachers, I credit my wife’s unconditional love, acceptance and support for who I am today.
I would now like to talk about my wife, Marlene, who is an integral part of my life. We have been married 36 years. We each have different areas of personal strength. You could say we represent Yin and Yang. The meaning of Yin and Yang is explained as, “Yin is negative and feminine. Yang is positive and masculine. Listening and supporting each other equally, ebbing and flowing from these roles depending on our needs and then there is harmony in the relationship.” We truly embody this concept. She has also helped me to discover my strengths, to believe in myself, and to have a greater insight into autism, schizophrenia and I/DD. We accept each other unconditionally. Our relationship has evolved into a mutually helpful partnership.
I now want to talk about my professional life. I am an educator, author and self-advocate. It was while volunteering in an Adult Education program for persons with I/DD that I realized my calling, my “aha moment.” It was then that I knew I wanted to share my perspective and knowledge to help people go beyond autism. I knew I could help children and adults who struggle with the same challenges I faced. I have lived experience unlike many teachers or some caregivers. I have an understanding of what an individual experiences and also how they interpret the world around them. Throughout my life I have found ways to compensate for my learning difficulties and rejoice teaching this to others. I have worked in education for 30 years, all grade levels from Pre-K to High School.
I mentioned I am an author and advocate. For me writing is a way to advocate for people who are disabled. I want to share my personal experiences living with autism with individuals who have a misconception of what autism is and do not understand what it is like living with it daily. It is also important to share my experiences with professionals, family members and other advocates. It is most important for individuals who live with the experiences daily, to help those who are struggling so they know that they are not alone.
My first book, “Challenged but Not Defeated: Strategies for Coping with Autism and Schizophrenia,” is a short autobiography. I talk about the power of hope and perseverance in my life and a message of acceptance and encouragement. It was not always easy. I didn’t accept the fact that I was so different from other people. I allowed my insecurity about my personal identity to be shaped by those who were not like me, but then I began to appreciate who I was and where I was going.
In my latest book, “Weight A Minute: Lessons a Family Learns through the Gift of Autism,” co-authored with Marlene, we tried to convey this very important message. The novel is about the importance of family and acceptance. The Weight’s live in Winston-Salem. The middle child lives with autism, and he is the hero of the book. Dr. Cynthia Briggs stated, “This novel will provide foundations for meaningful discussions both in the classroom and at home – it is very relatable to everyone.”
My mental health is very vital to me. My diagnosis didn’t come until adulthood. I was 50 years old. I always felt out of place in the world until I got my dual diagnosis of autism and schizophrenia. An abundance of things came together. I discovered there are some elements of schizophrenia and autism that help each other. I figured out how to help my “mind” find ways to support different parts of my mental process. There are times when I feel extremely overwhelmed, upset and unable to think rationally. Also, there is a firestorm of emotions – fear, anger and hostility.
Here is an example. My autism attempts to use logic whenever things seem very chaotic and gives my schizophrenia a template to deal with an unexpected or chaotic situation. On other occasions, my schizophrenia helps my very serious, logical autism mind find new ways to interact with people.
I am writing a third book, “The Schizophrenia Story: We all Help Each Other.” It will be out in February 2024.
Individuals who may have some form of physical or mental challenge should not be defined by their limitations but by their strengths. People have very defined expectations and parameters about what autism is, or what mental illness is. I think that’s the limitation that a lot of people with lived experience are dealing with. The fact is that people, whether they’re disabled or not, all have limitations. We all have challenges. The idea is to think outside the box, outside the parameters. We don’t have to fit in the parameters that others set for us.
I am on a lifelong quest for ways to overcome misperceptions about individuals with disabilities – to let everyone know we CAN do anything. With Marlene at my side, we give greater insight when speaking publicly and advocating. We would love to hear from you – questions, comments or just to say “hello.”
About the author: R.V. Kuser was awarded the North Carolina Leadership Achievement Award in 2022 by the NC Council on Developmental Disabilities, Raleigh, NC. The award recognizes an outstanding NC self-advocate whose work has improved the quality of life for people with I/DD. He is also a Southeast ADA Trainer Member. R.V. resides in Winston Salem, NC with his wife, Marlene and Kaylie, their fur baby. For more information about R.V., visit his website at kusertalk.com or send an email to R.V. at firstname.lastname@example.org.
Did you know? Information you can use!
- Conversation Series: Mental Health in the Individuals with I/DD (Vanderbilt Kennedy Center)
- I/DD – Diagnosing Psychiatric Disorders in People with I/DD (CAMH)
- Mental Health Aspects of I/DD (Association of University Centers on Disabilities)
- North Carolina Commission for Mental Health, Developmental Disabilities and Substance Use Services
- Policy Recommendation: Addressing the Mental Health and Wellness of Individuals with Intellectual Disabilities (Hogg Foundation for Mental Health)
- The Mental Health Crisis of Individuals with Intellectual and Developmental Disabilities (American Psychiatric Association)
Medicaid Policy & School Mental Health Part 2
- When: December 13, 2023, starting at 12:00 PM
- Where: The Mental Health Technology Transfer Center Network will present this session online
- What: This session (Part 2) will focus on policies concerning which providers can bill Medicaid for services and whether Medicaid can be billed for services provided in school settings. Part I focused on policies related to who is eligible for Medicaid coverage and what services Medicaid covers. You do not need to have participated in Part I to attend and learn from Part 2.
- Register: Click here to register and for more information
North Carolina Policy Updates
Medicaid Expansion is here!
Medicaid Expansion became official on Friday, December 1, 2023! North Carolina Medicaid now covers people ages 19 through 64 years with higher incomes. Many people who were may now be able to get health care coverage through Medicaid even if they did not qualify before. Learn more from the Medicaid Expansion website of the NC Medicaid Division of Health Benefits
NC Medicaid Innovations Waiver Provider Rate Increase
This change is intended to support Innovations Waiver Services’ Direct Care Worker wage Increases. Read the press release from the North Carolina Department of Health and Human Services (NC DHHS)
Here is a summary of comments shared by the Meet the Need NC Advisory Collaborative members regarding this announcement.
- This is a positive step forward in valuing the work of Direct Support Professionals (DSPs).
- This increase should help hire and retain more DSPs.
- NC DHHS, DHB and the LME/MCOs, as with all rate increases and all provision of services under Medicaid, are responsible for working with providers to assure accountability of how funds are used.
- The NC DHHS press release clearly states that there were not enough funds appropriated by the NC General Assembly in this budget year to achieve the $18 per hour for DSP goal, so our advocacy needs to continue.
- Advocacy around DSP wages remains critical for people with I/DD to access to services and supports.
- Rate and wage increases aren’t the only things needed to improve access to quality services and supports. We look forward to improvements in the education and training of DSPs through our community college system, and eventual career ladders for DSPs who continue their careers working with people with I/DD.
Behavioral Health Reimbursement Rates Increased for the First Time in a Decade
- The NC DHHS recently announced Medicaid reimbursement rate increases that will soon be implemented for most mental health, substance use, I/DD and traumatic brain injury (TBI) services in North Carolina. Read the press release
- Strengthening the Connection Between Schools and Behavioral Health: Presentation (i2i Center for Integrated Health)
- What is Care Management? (The Arc of NC)
Visit our Statewide Resources page for more resources!
Let’s get social! Stay in touch with us on Facebook, Instagram and more!
- Follow us on social media on Facebook and Instagram.
- View our Hear. Share. Act. 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!