Letter from the Executive Director
It is Developmental Disabilities Awareness Month. This leads me to a couple questions. What does awareness mean? What do we want people to be aware of? What are we doing to move North Carolina forward for all people with developmental disabilities?
Often, “raising awareness” means making sure our state leaders and our neighbors know of the struggles and isolation that people with developmental disabilities in our community experience. The Council continues to focus on raising awareness of the long-term twin crises including the 16,000-person waiting list for developmental disability services and the workforce shortage.
But we also want people to be aware of the gifts and talents that people with intellectual and other developmental disabilities (I/DD) possess. We, the Council, lift up the importance and beauty of inclusion. We celebrate steps forward and ensure that people with I/DD are leading and shaping the systems that impact them. We have a long way to go, but we are taking steps forward, including advocating for the new Care Extenders that will fund individuals with I/DD and family members to serve as part of care management teams. “Nothing about us without us” is a critical mantra within disability advocacy.
We lost one of the most important disability advocates this month with the death of Judy Heumann. Judy was the ultimate self-advocate and was instrumental in the passage of Section 504 of the Rehabilitation Act, the IDEA, and the Americans with Disabilities Act. She did this through campaigns that raised awareness. Think about the profound changes that we have experienced because of these laws. But also think about how much further we have to go. It is people like Judy Heumann who continue to show us the path forward, who teach us the importance of awareness. Let’s continue Judy’s legacy for inclusion and meaningful lives, relationships, and work for all people with developmental disabilities. Let’s make Developmental Disabilities Awareness Month a time where awareness leads to action and action leads to meaningful change. Judy showed us we can do this!
Talley Wells, Executive Director
[Photo of Judy Heumann ]
Public Policy (as of March 8, 2023)
The federal budget process for next year is in the early stages. Below are a few bills that have been introduced and have potential impact for people with I/DD.
Better Care Better Jobs Act (S 100) — Senators Bob Casey (D-PA) and Debbie Dingell (D-MI-6) introduced this bill that would:
Transformation to Competitive Integrated Employment Act (S 533/HR 1263) – Senators Bob Casey (D-PA) and Steve Daines (R-MT), and Representatives Bobby Scott (D-VA-3) and Cathy McMorris (R-WA-5) introduced this bill, which would phase out sub-minimum wages and increase competitive integrated employment (CIE) for people with disabilities. This legislation would provide funding to states and to existing sub-minimum wage providers to transition programs to new models. This bill has been referred to the House Committee on Education and the Workforce.
Air Carrier Access Amendments Act (S 545/HR 1267) – Senator Tammy Baldwin (D-WI) and Representative Dina Titus (D-NV-1) reintroduced this bill which would improve accessibility of air travel for people with disabilities. It would require new airplanes to meet minimum accessibility standards and require removal of access barriers on existing planes where feasible.
Prioritizing Accountability and Accessibility for Aviation Consumers Act of 2023 (S 400) – Senator Tammy Duckworth (D-IL) and Senator Deb Fischer (R-NE) introduced this bill that would require the Department of Transportation to publish an annual report disclosing the number of complaints the agency has received in the previous five years related to passengers with disabilities and the nature of the complaints. This would ensure that the public is more aware of the problems faced by travelers with disabilities and how these problems are resolved.
Plain Language – Congress is just beginning to work on next year’s budget. Some senators and representatives are working on bills to help people with disabilities have more community services, better jobs, and better access for airline travel.
Biden Administration to End the Public Health Emergency on May 11
The Biden Administration has announced that they will be ending the Public Health Emergency (PHE) related to the COVID-19 pandemic on May 11. Declaring a PHE allowed the healthcare system to access emergency services and increase funding to ensure that everyone in the country had access to medical care and treatment. States are preparing to transition back to pre-pandemic levels of funding and resources.
Plain Language – President Biden announced that the Covid-19 Public Health Emergency will be ending on May 11. The emergency gave more money and resources to our healthcare system to respond to COVID-19.
Proposed Changes to Social Security
The Social Security Administration is looking to make a big change to the way that it determines monthly payments for people with disabilities receiving Supplemental Security Income (SSI) benefits. Currently, SSI beneficiaries can see their payments reduced, often by one-third, if someone else regularly provides them with meals or groceries. But under a new plan, that would change. In a proposed rule published this month in the Federal Register, the Social Security Administration said it wants to update its regulations to exclude food from the way it calculates what’s known as “in-kind support and maintenance.” In addition, the agency intends to tweak its definition of income to allow for this exception.
Plain Language – People who get SSI payments sometimes get smaller payments if another person buys them groceries or meals. Social Security wants to change its rules so getting food from someone will not reduce the SSI payment.
Legislative – The legislature is in session, and in addition to working on the budget, various bills are being introduced. Below are a few related to people with disabilities.
Access to Health Care Options (H76) – This bill is the Medicaid Expansion bill that advocates have been hoping to see. The House and Senate have come to an agreement on Medicaid Expansion and the bill has passed in the House and should pass the Senate very quickly. At the time of this writing, the details of the bill were not available.
Standards of Student Conduct (H188) – This bill removes existing language that prevents schools from labeling behaviors such as dress code violations, non-compliance with staff directives, disrespectful language, and altercations that do not involve injury as serious violations. Currently they are considered minor violations. This bill would allow schools to deem these as serious infractions and may result in expulsion, removal, or legal involvement. Such infractions tend to disproportionately affect students of color and/or students with disabilities.
Driver’s License Designation/Autism (H77) – This bill directs the Division of Motor Vehicles to develop a designation for driver’s licenses that may be granted upon request to a person with autism spectrum disorder. This type of bill has been proposed before. Some I/DD advocates remain concerned about aspects of this bill, including how the database will be maintained and who has access to it.
Schools for Deaf and Blind (H11) – This bill proposes creating independent boards for Eastern NC School for the Deaf, NC School for the Deaf, and Governor Morehead School for the Blind. There are concerns about the potential impact for students with co-occurring disabilities (the coexistence of both a mental illness and a substance use disorder) and/or behavioral health needs being denied admission to schools as the admission process would fall under the independent boards.
Guardianship Bill – While this bill has not yet been introduced, it is expected to be in the near future and will promote alternatives to guardianship.
Plain Language – The legislature is working on the budget for next year. Legislators are also writing bills that could affect people with disabilities. One bill that will become law will give healthcare to more people in NC. There are other bills that are still being considered.
The North Carolina Department of Health and Human Services (NCDHHS) is delaying the implementation of the NC Medicaid Managed Care Behavioral Health and Intellectual/Developmental Disabilities Tailored Plans (Tailored Plans) until October 1, 2023.
Tailored Plans, previously scheduled to launch April 1, will provide the same services as Standard Plans and will also provide additional specialized services for individuals with complex behavioral health conditions, I/DD, and traumatic brain injury (TBI). The delay is due primarily to concerns about the adequacy of the network of healthcare providers. Based on current data, the NCDHHS estimated that 20,000 to 30,000 of the people who will be in Tailored Plans would likely not have their current primary care provider in network by April 1. So, the delay is designed to provide LME/MCOs more time to build these networks to ensure that people with disabilities have a smoother transition with continued access to their primary care provider.
For now, beneficiaries set to receive care through the Tailored Plans will continue to receive behavioral health services and I/DD and TBI supports through their LME/MCO (Local Management Entity-Managed Care Organizations), and physical health and pharmacy services through NC Medicaid Direct. Tailored Care Management, which launched on December 1, 2022, will continue to be implemented in the interim.
Plain Language – A new way of managing care for people with disabilities called Tailored Plans was supposed to start April 1. Now, the Tailored Plans have been delayed until October to make sure people with disabilities will be able to get care from their primary care doctor.
UNMET Movie Debuts Throughout State
It’s nearly impossible to believe there are 16,000 individuals with disabilities in North Carolina who are on the NC Innovations Waiver waitlist, unable to receive the services and supports they need for everyday living. Coupled with the staggering Direct Support Professional (DSP) crisis, North Carolinians are sitting up and taking notice.
Attention to these two major issues are highlighted in “UNMET: North Carolina’s Two Developmental Disability Crises,” a 25-minute movie commissioned by the North Carolina Council on Developmental Disabilities. It shows the real-life situations of individuals with developmental disabilities and what it looks like when their needs are unmet.
NCCDD hosted two sneak preview events in Winston-Salem and Wingate, NC, March 9 and March 23, respectively. The March 9th event at the ACE Theater Complex at the UNC School of Arts in Winston-Salem welcomed over 150 people to the showing, which was followed by a panel discussion providing action steps to address these crises. The movie was also shown at Wingate University in Wingate, NC on March 23.
[photos to go with this article above.]
NCCDD Releases New RFA fo I/DD Services Champion
The North Carolina Council on Developmental Disabilities (NCCDD) intends to fund a three-year initiative to champion and increase employment and leadership of individuals with intellectual and other developmental disabilities (I/DD) within the systems that impact their community. This may include care coordination and advocacy in schools, Local Management Entities/Managed Care Organizations (LME/MCOs), the North Carolina Division of Mental Health, Developmental Disabilities and Substance Use Services (NC DMH/DD/SUS), and providers.
NCCDD is currently accepting Requests for Applications (RFAs), proposals for initiatives that will help the Council achieve the goals outlined in its Five-Year State Plan.
All applications must be received by 5:00 pm EDT on April 19, 2023. Please apply via DD Suite here.
Self Advocate Series Tackles New Topics
On April 19, the NC Council on Developmental Disabilities (NCCDD) will host its monthly Self-Advocate Discussion Series session. The Self-Advocate Discussion 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 topic for April’s session is “unmet needs.” The Registry of Unmet Needs in North Carolina includes more than 16,000 individuals with intellectual and other developmental disabilities. At the same time, those who currently receive services also have unmet needs because of too few direct support professionals (DSP). More awareness is needed about the impact on people’s lives of being unserved or underserved.
In April, the NCCDD’s Self Advocate Discussion Series topic will be on the unmet needs in NC. We will watch a film that shows what it means for members of NC’s I/DD community to have or not have access to services. We’ll discuss the relationship between the waiting list and the DSP crisis. We will hear from the lived experience of advocates and from concerned persons with I/DD who are still waiting. You will receive resources about advocacy groups who focus on the services crisis. Please join us on Wednesday, April 19. Be sure to register for the event using the link provided here.
Meet the Need NC Hosts Monthly Lunch & Learn Series, “Hear. Share. Act.”
Meet the Need NC’s next Hear. Share. Act. Lunch & Learn Series will be on April 18 from 12:00 to 1:00 p.m. Each month, the series features a different topic intended to help people gain basic knowledge of the systems, programs and services that serve individuals with I/DD. Register here.
We encourage people in and outside the I/DD community who want to better understand the benefits of I/DD inclusion to attend. This includes, but is not limited to, people with I/DD, family members/caregivers, healthcare providers, educators, policymakers, and anyone who wants to improve the lives of people with disabilities!
Meet the Need NC is an initiative of the Leadership Alliance for Neurodevelopmental Disabilities (LAND), the Mental Health Transformation Alliance, and is in partnership with NCCDD through a grant.
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