February 2024 Highlights and Hot Topics
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- Message from Anthony Young: Layers
- Exercise Your Right to Vote: Photo Voter Identification
- NCCDD Celebrates Black History Month
- Public Policy Update (as of February 21, 2024)
- March Self-Advocate Discussion Series: Organized Advocacy
- Initiative Highlight: Bloom Fitness Empowers Adults with I/DD to Become Active and Engaged
- Hispanic Disability Outreach: Understanding the 1915(i) Services / Entendiendo los servicios del 1915(i)
- Meet Juanita Hooker, NCCDD’s Newest Systems Change Manager
- En Español - febrero 2024
- Audio - Highlights and Hot Topics
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This month, we are so pleased to have as our guest author, Anthony Young, writing the "Message from the Executive Director" column. Welcome, Anthony, and thanks for sharing your story with us as we celebrate Black History Month. — Talley Wells
"Layers"
I am an African American man, self-advocate, and caregiver with a story to share.
As a senior citizen now, I can tell you that my life has consisted of many layers down through the years. The current layer is that of self-advocate and caregiver.
Anthony Young with his motherHere’s how the story unfolds.
I am the third of five children. I was born with cerebral palsy. My two older siblings have passed away and now I serve in the role of big brother to my two younger siblings.
After our mom had a major stroke four years ago, I moved home to help take care of her. That was needed because my two younger siblings were not able to retire early, and we did not want our mom to go into an assisted living facility.
Some may ask, “How can someone with cerebral palsy be a caregiver?" Easy…with faith, a mind made-up, and determination mixed with love!
I must say that our mom set the example. My siblings and I watched as my mom served as caregiver for her mom. In our community, it’s just what families do.
I have watchful eyes and listening ears that are focused on mom’s every move. I drive her to medical appointments, church, Walmart, and anywhere else she has a mind to go. I use a walker, and she uses a rollator! We are quite the pair!
I try to encourage mom to continue doing therapy (which sometimes ends in a lively discussion!). I am her protector, advocating for her whenever necessary.
I wash dishes and take out the garbage. I even have the chore of hanging out and bringing in her laundry (yes, on the clothesline outside, who does that?). Life is interesting. Growing up, my mom was my biggest advocate and motivator, and now, I get to be hers!
And when time allows, I continue to advocate for accessibility and reliable transportation for all, which includes people with intellectual or other developmental disabilities (I/DD). I am a member of the Strategic Involvement Committee (SIC). The Greensboro Transit Authority (GTA), Greensboro Transportation Action Committee (GTAC) and others make up the SIC. We gather monthly to discuss how to better serve the paratransit community. These are such critical issues in the I/DD community. I have first-hand knowledge and experience, so I know the importance of working hard to advocate for these rights.
I dabble a little in politics too, encouraging African Americans as well as the I/DD community to register and vote. I remind them that many people gave their lives just so we’d have the right to vote. And I let them know that their vote really does count! In years past, I’ve even chauffeured people to the polls.
I enjoy attending conferences, like the recent i2i Conference where I learned more about Medicaid Expansion. In sharing this information with others, one of my high school classmates was able to apply and now she has health insurance.
As you may have gathered, l enjoy helping, supporting and motivating people. It’s my passion and I love it!
Exercise Your Right to Vote: Photo Voter Identification
This month's voter education tip is to make sure that you have an acceptable photo identification that is now required to vote. This is new for North Carolina, so we all need to have a plan to get a photo ID card and be ready to vote. Our friend, Jadon Mapson, who lives in New Hanover County, shares his story as a first-time voter.
Jadon's Story
Jadon MapsonToday I received my very first voter registration card! Now I have the opportunity to vote for our next President, Governor and other important officials.
When it is time for me to vote, Mommy will take me to a building, and I will mark my choices on a piece of paper. If I need help, Mommy will help me. It will be okay, and I will be happy.
When I am all done, my sheet will be placed in a machine, and my vote will be counted, then I will get a sticker.
I am excited about voting!
And Jadon just used his ID this past weekend to cast his early vote!
Jadon, thank you for sharing this big step in your life and helping us know that we can get a voter ID and cast our votes, too.
To learn about North Carolina Voter Identification, or Voter ID, Disability Rights NC has prepared an excellent education piece about how to get your Voter ID card. You can find this resource at https://disabilityrightsnc.org/resources/nc-photo-id-requirements-to-vote/.
NCCDD Celebrates Black History Month
Black History Month, celebrated in February, is a time to recognize the significant contributions of Black individuals throughout America's history. During this important month, NCCDD highlighted and celebrated several Black individuals who also have a disability each week in our Hot Topics Blog.
We featured Lois Curtis, best known for being the "L.C." in the Olmstead vs. L.C. decision that paved the way to community living for many who were living in institutions. Also featured was Disability Rights Activist Brad Lomax, who had many accomplishments including being a key part of the 504 Sit-in protest in response to the failure of the Department of Health, Education and Welfare to implement Section 504 of the Rehabilitation Act of 1973.
Although both Curtis and Lomax have since passed, their advocacy efforts paved the way for others to live their lives the way they choose, and left a legacy for future advocates to build upon. Such as Andraéa LaVant, a cultural changemaker who is an active trailblazer determined to cultivate a “culture for all.”
As we wrap up Black History Month and our spotlights on Black individuals who also have a disability, we’d like to share a comment from an article written in 2022 by Jennifer Thomas, policy advisor in the U.S. Department of Labor, Office of Disability Employment Policy.
“Like many Black Americans, I feel pride each February when our nation’s schools and communities place a special emphasis on Black history and leaders,” wrote Thomas. “Of course, Black history is American history and thus should be honored every month, and while I believe progress has been made on that front in recent years, there is still a ways to go.”
Read the entire series, which also includes pictures, data, statistics and links to more notable individuals, in our Hot Topics Blog article: Black History Month.
Did you know?
When looking at North Carolina, the Centers for Disease Control and Prevention (CDC) reported in 2021 that nearly 32% of Black North Carolinians have a disability. Of those, 16% having a mobility disability; 14% having a cognitive disability; 8.5% having an independent living disability; and the remainder having a hearing, vision or self-care disability. Overall, the CDC found that approximately 1 out of 4 Black adults in American have a disability.
Public Policy Update (as of February 21, 2024)
STATE
Legislature
The short session is scheduled to begin April 24, 2024. The short session is designed primarily for review and adjustments to the two-year budget that was approved last session. With the elections coming up, the expectation is that this session will be quick. One critical area of focus for individuals with intellectual or other developmental disabilities (I/DD) advocates is to increase the funding allocated last session for direct support professional wage increases. As a reminder, $60 million was included in the budget which fell short of the $90 million needed to achieve the targeted increases. Continuing education and advocacy around the waitlist is also a critical topic.
While the session has not yet started, the Legislative Oversight Committees (LOC) are meeting. Both LOC on Health and Human Services and the LOC on Medicaid met in February and plan to meet again in March.
Appendix K Flexibilities
During the Public Health Emergency of the COVID pandemic, the federal government allowed states to create flexibilities in their waiver services (Innovations, Traumatic Brain Injury (TBI) waiver). After the Public Health Emergency, NC asked the federal government for permission to continue many of the flexibilities. Below are some of the areas that will continue:
- Telehealth for Community Living Support.
- Increase the Innovations Waiver cap from $135,000 to $184,000.
- Allow parents of minor children receiving Community Living Support to provide this service to their child who has been indicated as having extraordinary support needs up to 40 hours/week.
- Allow Supported Living to be provided by relatives.
- Allow relatives as providers for adult waiver members to provide above 56 hours/week, not exceeding 84 hours/week of Community Living Support.
For a complete list of flexibilities: https://medicaid.ncdhhs.gov/blog/2024/01/30/nc-medicaid-guidance-sunsetting-innovations-waiver-appendix-k-flexibilities
Direct Care Workforce Reports
Recently, two reports related to the direct care workforce were released (one in late 2023 and the other in January 2024) that shared recommendations to improve NC's Direct Care Workforce, also referred to as Direct Support Professionals.
The NC Area Health Education Centers Program (AHEC) report focused on developing a plan for certification of direct care workers in order to increase recruitment and retention of the Home- and Community-Based Services (HCBS) Direct Care Workers (DCWs). The recommendations from this report included:
- An umbrella system for credentialing DCWs that incorporates new and existing training options.
- Adopt common core competencies for all direct care workers.
- Ensure training is accessible for all workers, including paid training time
- Develop infrastructure for the administration and oversight of credentialing.
- Connect competency attainment with wage and rate differentials. (Make sure DCWs are paid for these added skills/trainings and that they are paid to get trained).
- Provide additional wraparound support services to direct care workers.
Link to the full report: https://www.ncdhhs.gov/nc-ahec-recommendations-dcw-hcbs-worker-certification/download?attachment
Caregiving Workforce Strategic Leadership Council is a workforce group organized by NC Department of Health and Human Services and the NC Department of Commerce. The goal of their work and report was to use data and expert input to identify strengths and challenges facing this critical workforce and to develop coordinated action. This report outlines action steps in the following areas:
- Define what the direct care workforce is.
- Collect more comprehensive and better data for the direct care workforce.
- Create a living wage for direct care workers.
- Expand apprenticeship programs.
Here is the link to the full report: https://www.ncdhhs.gov/investing-north-carolinas-caregiving-workforce-recommendations-strengthen-north-carolinas-nursing/download?attachment
FEDERAL
Budget
On January 7, a bi-partisan topline agreement on funding levels for Fiscal Year 2024 was reached. At that time, there was a Continuing Resolution (CR) in place that was set to expire on January 19. (As a reminder, a CR continues last year’s funding levels while Congress works to complete a budget for the federal government for Fiscal Year 2024). With no agreement on a budget, on January 18 the House and Senate both passed a third CR to avoid a partial government shutdown on January 19. The President signed the CR on January 19. The new CR measure extends the "laddered” approach with deadlines of March 1 for Agriculture, Military Construction/VA, Energy/Water, and Transportation/Housing and Urban Development bills and March 8 for Labor, Health and Human Services, Education (LHHS), Defense, State/Foreign Operations, Commerce/Justice/Science, Financial Services, Interior/Environment, Legislative Branch, and Homeland Security bills.
House Passes Bill to Ban Use of Quality-Adjusted Life Years (QALYs)
On February 7, the House of Representatives passed the Health Care for All Patients Act (H.R. 485) to prohibit the use of quality-adjusted life years (QALYs) and other similar metrics in all federal programs. The use of QALYs in health care decision-making is inherently discriminatory—a year of life with a disability is counted as lower quality and of lower value than life without a disability. This could result in people with disabilities being denied access to health care. This bill would ban using QALYs. The bill passed the House and will move to the Senate.
Senate Committee Passes FAA Reauthorization
On February 8, the Senate passed a five-year reauthorization of the Federal Aviation Administration (FAA). The bill includes several positive provisions for people with disabilities, including:
- A pilot grant program for improving accessibility at airports.
- Improved training requirements for employees assisting passengers with wheelchairs.
- Improved training requirements for employees responsible for the storing of wheelchairs and scooters.
- A requirement that airlines improve the accessibility of their websites.
- A requirement that airlines share the dimensions of cargo holds and entries for all aircraft types and refund passengers if their wheelchair cannot be transported.
Eliminating Marriage Penalty in SSI Act (HR 7055)
This bill was introduced in the House with bi-partisan support. It would exclude a spouse's income when determining eligibility for Supplemental Security Income (SSI). It would also disregard marital status when calculating the SSI benefit amount for an adult with I/DD.
U.S. Department of Education Releases Assistive Technology (AT) Guidance
The Department of Education released guidance to improve access to assistive technology (AT) in schools. The guidance links the use of AT to the Individuals with Disabilities Education Act (IDEA) and clarifies the uses of AT in the educational setting. It also identifies possible funding sources. The purpose of the guidance is to increase access and the use of AT.
Read the guidance from the U.S. Department of Education
FDA to Ban Shock Devices
In the on-going effort to ban the use of shock devices, the FDA has indicated that it plans to issue a ban. The FDA banned the use of shock devices in 2020, but this was overturned when the courts ruled that the FDA did not have the authority to ban these devices. Last year, Congress passed legislation giving the FDA the authority. Since that time, disability advocacy groups including the Autistic Self Advocacy Network, the Autism Society of America, The Arc US, and the National Disability Rights Network have called on the agency to move forward on a ban without delay. There is hope that this will happen very soon.
March Self-Advocate Discussion Series: Organized Advocacy
Organized advocacy is when relationships and advocacy come together to make a difference. It is also called grassroots advocacy, meaning that is a way of organizing that is based on making the voices of people (the roots) heard. Grassroots advocacy organizes into campaigns, which can gain the power to shape public opinion and influence decision-makers.
Join us in March for the Self-Advocate Discussion Series where you will hear about the grassroots efforts of the disability rights movement. Come share a story about what organized advocacy is like for you! We’ll also discuss different ways to advocate, like the difference between educating and lobbying. And you will learn about advocacy organizations and opportunities in our community that can help make you a stronger advocate.
Register today!
NCCDD's Self-Advocate Discussion Series is held on the third Wednesday of each month at 1PM. The series aims to prepare, organize and mobilize North Carolina self-advocates for influencing social and systems change. The series is a perfect time to connect with others with common interests, develop impact strategies for telling personal stories, and become (or continue to be) part of the NCCDD community. The series is facilitated by Chris Hendricks, NCCDD Policy Education Coordinator and NCCDD self-advocate members. Learn more about the series here.You can view video recordings of previous Self-Advocate Discussion Series webinars on our YouTube channel.
Initiative Highlight: Bloom Fitness Empowers Adults with I/DD to Become Active and Engaged
Last fall, Bloom Fitness Corporation (Bloom) was chosen as a recipient for one of NCCDD’s Community Living Mini-Grants. Bloom is a non-profit organization offering health and wellness programs for adults with intellectual or other developmental disabilities (I/DD). Its program offers holistic wellness classes in person, on demand and through its online app called “Bloom Live!” Their belief is that everyone who has an I/DD has an athlete within themself and their vision is to help them to find that inner athlete.
Funding from the NCCDD Mini-Grant allowed Bloom to develop a guide about its fitness curriculum based on the program’s success and unique approach to providing a program with positive results for adults with I/DD. The classes, led by dedicated Bloom volunteers, not only help the athletes stay fit, but also build their confidence and social skills.
“We believe in the value of ‘leading with heart’ so that fitness can follow,” said John Watson, founder of Bloom Fitness. “It’s more than about learning how to exercise. It’s about building confidence and community. Athletes learn how to follow directions, respect and support others – all while having fun and getting fit.”
The Bloom Fitness Curriculum Success Guide is intended as a reference for others who are interested in creating fitness programs for adults with I/DD.
“Our curriculum guide is a living document,” said Beryl Bailey, business manager at Bloom Fitness. “It is always changing and expanding as we learn new things and get feedback from our participants.”
Download the Bloom Fitness Curriculum Success Guide
NCCDD Continues to Support Accessibility to Bloom’s Programs
Bloom plans to offer many of their classes on-demand and on Bloom Live! through a mobile device app. The app is also used to communicate both with the athlete and their caregiver. They are currently updating the app, and funding from this NCCDD Community Living Mini-Grant will support making the app accessible so that the athletes have equal access to all of Bloom’s programs. A beta version of this app is expected to be ready by Spring of 2024.
About Bloom Fitness
Bloom’s inspiration started with John and Jill Watson’s daughter Emma, a young woman with I/DD. While growing up, the Watsons found many options to support Emma’s physical and emotional health through movement and fitness. But as she entered adulthood, options that met her unique needs were few and far between. As John entered retirement, he knew he wanted to fill this gap by using his passions for fitness, supporting people with I/DD, and philanthropy.
In 2016, Bloom Fitness began in partnership with an I/DD service provider in Rosenberg, Texas with seven stationary bikes and a dream to get adults with I/DD moving. Currently, Bloom has invested nearly $400,000 in supporting its mission of leading every person with I/DD to a lifetime of wellness. Bloom Fitness currently serves approximately 1,000 athletes with I/DD in nearly 35 locations throughout Texas and North Carolina. Learn more about Bloom Fitness Corporation
Hispanic Disability Outreach: Understanding the 1915(i) Services / Entendiendo los servicios del 1915(i)
Si usted o un familiar padece una discapacidad en el desarrollo o intelectual, es crucial que esté informado acerca de los servicios 1915(i). Este programa abarca los nuevos servicios destinados a personas con discapacidades intelectuales y del desarrollo (IDD) y lesiones cerebrales traumáticas (TBI).
Antes de la implementación del programa 1915(i), algunos individuos recibían servicios bajo la categoría b(3), los cuales están siendo reemplazados por el 1915(i). Es posible acceder a estos servicios tanto si se recibieron previamente los servicios b(3) como si se es nuevo en este programa.
Aquellas personas con discapacidades de conducta o de salud mental pueden ser elegibles para otros servicios 1915(i). En caso de que esto aplique a usted, le instamos a comunicarse con su LME/MCO o administrador de cuidados.
El primer paso para acceder a los servicios 1915(i) es determinar la elegibilidad. Para hacerlo, solicite una evaluación a su administrador de atención. Si no tiene un administrador de atención, puede solicitar uno a su LME/MCO o seguir este enlace: https://medicaid.ncdhhs.gov/certified-tailored-care managementproviders/download?attachment
Una vez que obtenga un administrador de cuidados, solicite el 1915(i). Debe tener Medicaid para recibir los servicios 1915(i), si no tiene Medicaid, vaya a su Departamento de Servicios Sociales (DSS) local. Los servicios ofrecidos a través del programa 1915(i) incluyen:
- Empleo con apoyo: Esto implica encontrar el trabajo adecuado, evaluación, planificación, desarrollo laboral, capacitación y apoyo a largo plazo.
- Apoyo a la vida comunitaria: Esto implica apoyo, asistencia y/o supervisión con actividades. Este servicio está disponible para miembros con I/DD o TBI.
- Relevo: Proporciona apoyo y alivio periódicos o programados a los cuidadores primarios, aliviando la responsabilidad y el estrés de cuidar a personas con I/DD. Este servicio está disponible para algunos miembros con I/DD, trastorno emocional severo (SED), trastorno severo por uso de sustancias (SUD) y TBI.
- Transición a la comunidad: Ofrece fondos para miembros adultos que se mudan de un entorno institucional a su residencia privada. Este servicio está disponible para miembros con I/DD, enfermedad mental grave (SMI), trastorno por uso de sustancias (SUD) o TBI.
Para información adicional, le recomendamos acceder a los siguientes enlaces:
- https://www.ncdhhs.gov/providers/lme-mco-directory
- https://medicaid.ncdhhs.gov/blog/2023/06/30/nc-medicaid-obtains-approval-1915i-state-plan-amendment
- https://medicaid.ncdhhs.gov/certified-tailored-care-management-providers/download?attachment
- https://disabilityrightsnc.org/news/1915i-services/
In English:
If you or a family member has a developmental or intellectual disability (I/DD), it is crucial to be informed about 1915(i) services. This program encompasses new services designed for individuals with I/DD and traumatic brain injuries (TBI).
Before the implementation of the 1915(i) program, some individuals received services under the category b(3), which are now being replaced by the 1915(i). Access to these services is possible whether one has received b(3) services before or is new to this program.
Individuals with behavioral or mental health disabilities may be eligible for other 1915(i) services. If this applies to you, we encourage you to contact your Local Management Entity/Managed Care Organizations (LME/MCO) or care manager.
The first step to access 1915(i) services is to determine eligibility. To do so, ask your care manager for an assessment. If you don’t have a care manager, you can request one from your LME/MCO or follow this link: https://medicaid.ncdhhs.gov/certified-tailored-care-management-providers/download?attachment.
Once you get a care manager, ask for 1915(i) services. You must have Medicaid to receive 1915(I) services. If you do not have Medicaid, go to your local Department of Social Services (DSS).
The services offered through the 1915(i) program include:
- Supported Employment: This involves finding the right job, evaluation, planning, job development, coaching, and long-term support.
- Community Living Support: This involves support, assistance, and/or supervision with activities. This service is available for members with I/DD or TBI.
- Respite: Provides periodic or scheduled support and relief to primary caregivers, alleviating the responsibility and stress of caring for individuals with I/DD. This service is available for some members with I/DD, severe emotional disturbance (SED), severe substance use disorder (SUD), and TBI.
- Transition to Community: Offers funds for adult members moving from an institutional setting to their private residence. This service is available for members with I/DD, severe mental illness (SMI), SUD, or TBI.
For additional information, we recommend accessing the following links:
- https://www.ncdhhs.gov/providers/lme-mco-directory
- https://medicaid.ncdhhs.gov/blog/2023/06/30/nc-medicaid-obtains-approval-1915i-state-plan-amendment
- https://medicaid.ncdhhs.gov/certified-tailored-care-management-providers/download?attachment
- https://disabilityrightsnc.org/news/1915i-services/
Meet Juanita Hooker, NCCDD’s Newest Systems Change Manager
Juanita Hooker, Systems Change ManagerJoin us in welcoming our newest staff person, Juanita Hooker, NCCDD’s Systems Change Manager for the Financial Asset Development Committee. Juanita comes to us after serving for over 30 years for NC Vocational Rehabilitation Services. We look forward to having Juanita as part of the NCCDD team.
Read more about Juanita from Juanita!
Growing up with family members who needed more assistance and intervention, I was not privy to the ‘what and why’ but just observed and wanted to do more. I became a constant student to discovering the environment around me…and how best to impact that.
I started my professional career as a Rehabilitation Counselor with the state agency after having been introduced through the East Carolina University’s Vocational Rehabilitation program. I graduated with a master’s degree in Rehabilitation Counseling and another in Vocational Evaluation. In the time between then and now, I have worked within the private sector, serving individuals connected to worker compensation and long-term disability managed care services, to assist individuals pursuing work comparable to their abilities. I have been a part of many trainings, conferences, and consulting with physicians, engineers, and other specialists of varying expertise. I have engaged with employers in professional and service fields, exploring what they need to fulfill their business needs. But most importantly, I have partnered with individuals, families, agencies, and programs, listening to their expressed concerns, and working to overcome barriers that prevent people with disabilities from achieving their goals for employment and independence.
I returned to the state agency in 2008 when I recognized I had more opportunity and ‘power’ to be in a helping role than the private sector protocol allowed. I have since moved through the agency, gaining skills, experience, and knowledge that I have been fortunate to share with teams in various mentoring and leadership capacities. Moving into management removed me from the direct care I enjoyed. I focus my service on the simple precept: “what do you need?” Today, I find that I have an opportunity to again expand my reach to partner with families in my new role, and I am excited!
