June 2023 Highlights and Hot Topics
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- Public Policy (as of June 12, 2023)
- Your Support of Public Policies Makes Change Happen in North Carolina
- Nominations Open for Council’s Advocacy & Leadership Awards
- NCCDD Releases Two RFAs
- Self-Advocate Discussion Series Session: July 2023 – Comfortable Communication
- En Español - Junio de 2023
- Audio - Highlights and Hot Topics
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Letter from the Executive Director
We need to make time for joy, relaxation, and relationships this summer.
All of us left our May Council meeting exhausted. We had so many initiatives and policy updates that we didn’t have enough time for meals and connecting with one another. Everything was important, but we all agreed that we cannot continue at this pace.
We have to make time for joy, relaxation, and relationships.
The good news is that it is summertime! Summer is a great reminder that each of us needs some time off and time to reconnect with friends and loved ones.
We have all worked hard to educate and advocate. There are so many issues impacting our community. There is so much unmet need. We have to continue to do this work, but we can only do it well if we make time to meet our own needs and make time for joy and connections.
So, I am going to stop writing. The day is ending. It is time to go home and enjoy the summertime with my family and friends!
Talley Wells, Executive Director
Public Policy (as of June 12, 2023)
FEDERAL
On June 3, President Biden signed The Fiscal Responsibility Act of 2023. The bill is the compromise reached following negotiations about the debt ceiling. The legislation includes new spending limits in exchange for increasing the debt ceiling for two years. It is unclear how the spending limits might impact intellectual and other developmental disabilities (I/DD) funding in the coming year. There is some concern that funding for state Councils on Developmental Disabilities could be reduced.
The legislation also includes new work requirements for food stamps and Temporary Assistance for Needy Families (TANF) recipients without children up to age 54. (The law previously applied to those 49 and younger.) Veterans, the homeless, and people who were children in foster care are exempt from work requirements. The bill did not include work requirements or other changes for Medicaid recipients.
Under the legislation, $11 billion in rescinded unobligated COVID-19 relief funds and $10 billion in money shifted from the Internal Revenue Service will be used to beef up non-defense discretionary spending. Also, $10 billion in funds repurposed from mandatory programs and $23 billion that’s designated as emergency funding will be shifted.
Plain Language: On June 3, President Biden signed The Fiscal Responsibility Act of 2023. This bipartisan (Democrat and Republican supported) bill raised the debt ceiling. The debt ceiling is the most amount of money that the federal government can borrow to pay its bills. Congress agreed to raise the debt ceiling and also put some limits on spending.
There are some new work requirements for the Supplemental Nutrition Assistance Program (SNAP) for people below the age of 54. Work requirements are a number of hours a person has to work in order to receive SNAP. This bill has no impact on Medicaid.
Bills Proposed to Improve Interactions Between People with Disabilities and Law Enforcement
On May 17, the House and Senate introduced bills aimed at addressing the increased incidence of violence involving law enforcement and people with disabilities. Research shows that 33-50 percent of all use-of-force instances with law enforcement involve people with mental health disabilities, which is disproportionately higher than the total population without mental health disabilities.
Human-Services Emergency Logistics Program (HELP) Act (S. 1729 / H.R. 3498). This bill will divert non-criminal, non-fire, and non-medical emergency calls from 911 systems to state and regional systems that support people in crisis related to a mental health condition, like 211 and 988. The bill provides resources and oversight for 211 and 988 systems to ensure that they work correctly.
Safe Interactions Act (S. 1731 / H.R. 3550). This bill will provide grants to enable non-profit disability organizations to develop training programs that support safe interactions between law enforcement and people with disabilities. The training would include people with disabilities as instructors. An advisory council chaired by a person with a disability would be established to oversee the training development and implementation.
Data Interactions and Accountability for Law Enforcement with Individuals with Disabilities (DIALED) Act (S. 1730). This bill would improve accuracy and transparency of data collection on how people with disabilities are affected by interactions with law enforcement, including use-of-force and fatal interactions. A national advisory council will also be established to develop improved collection and reporting strategies.
Plain Language: On May 17, the House and Senate introduced bills to make people with disabilities safer when they interact with law enforcement officers. The first bill is the Human-Services Emergency Logistics Program (HELP) Act. It would make sure people with disabilities could call for help without having to call the police. The second bill is the Safe Interactions Act. This bill will give money to disability organizations to create training programs for police officers on best ways to help people with disabilities. The training will be taught by people with disabilities. The third bill is the Data Interactions and Accountability for Law Enforcement with Individuals with Disabilities (DIALED) Act. This bill will make sure the public knows how people with disabilities are affected by interactions with the law enforcement.
Centers for Medicare & Medicaid Services Proposed Rules
This effort includes key changes to the rules governing home and community-based services through what’s being called the Ensuring Access to Medicaid Services regulation, or the Access Rule.
Under the proposal, states would be required to reassess the needs of each individual receiving home and community-based services annually and revise service plans accordingly. In addition, the rule would require that at least 80 percent of what Medicaid pays for personal care, homemaker and home health aide services goes directly toward compensation for the person providing the service rather than for administrative purposes or profit. And, states would need to publish the average hourly rate paid to direct care workers.
The regulation also includes new mandates for states to report on how long their waiting lists are, whether people can access services once they get a waiver and various quality measures in their home and community-based services programs. Centers for Medicare and Medicaid Services (CMS) would expect states to maintain an electronic incident management system and respond to incidents within certain time frames. States would also be required to create a grievance process for home and community-based services recipients in traditional Medicaid plans so they can file a complaint against a provider or state much like already exists for those in managed care plans.
In addition to the Access Rule, CMS is also issuing the Managed Care Access, Finance and Quality proposed rule. That regulation would require states to regularly survey managed care enrollees about their experiences, institute maximum appointment wait time standards and require states to conduct secret shopper surveys annually to ensure that managed care plans are complying with appointment wait time standards and that their provider directories are accurate, among other changes.
Both of the proposed rules are up for public comment until July 3.
Plain Language: The agency that oversees Medicaid is proposing rules to improve home and community-based services for people with disabilities. The rules would require states to make sure people get the services they need and to ask people about their experiences with their services.
STATE
Budget
In response to the House budget, the Senate passed a budget on May 18. A Conference Committee is currently working to resolve the differences between the two budgets. A final budget is expected at the end of June, first week of July.
Below is a comparison of key intellectual and other developmental disabilities (I/DD) budget items in the House and Senate budgets:
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House |
Senate |
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Waiver Slots |
250 Innovations Waiver Slots |
350 Innovations Waiver Slots |
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DSP Rate Increases |
$60,000,000 Provides funds to increase the wages of direct care workers who provide services for individuals on the Innovations waiver. Pass-through at 85% |
$60,000,000 Provides funds to increase the wages of direct care workers who provide services for individuals on the Innovations waiver. No pass-through language requirement. |
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Medicaid Rebase |
$440,000,000 FY2023-2024 and $620,000,000 FY2024- 2025 Provides funding for projected changes in Medicaid enrollment, enrollment mix, capitation costs, and federal match rates, as well as the ongoing transition to managed care. |
$540,000,000 FY2023-2024 and $720,000,000 FY2024- 2025 Provides funding for projected changes in Medicaid enrollment, enrollment mix, service and capitation costs, and federal match rates, as well as the ongoing transition to managed care. |
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Competitive Integrated Employment |
none |
$5,000,000 Recurring for FY2023-2024 and FY2024-2025 Provides funds to support competitive integrated employment |
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Single Stream funding to LME MCOs |
$15 million recurring cut These funds are used to support some programs and services for people with disabilities (especially those who do not have Medicaid funding or Innovations slots) |
Plain Language: The NC Legislature is working on the state budget. The House passed a budget bill that included some of the things that advocates have asked for, like better direct support professional (DSP) wages and 250 Innovations slots. The Senate passed a budget that included 350 Innovations slots and money for better DSP wages. A conference committee is now working to decide on the final numbers in the budget.
Bills
Medicaid Expansion
H76 – Access to Healthcare Options – This is the Medicaid expansion bill. This bill extends Medicaid benefits to people who have been in a health care coverage gap. This extends coverage to people under 133 percent of the federal poverty level who have not previously been eligible.
*Signed into law on 3/27/23. Medicaid Expansion will go into effect when the legislature passes a budget, CMS approves the state’s plan for Medicaid expansion, and the health plans and state are ready to go live.
HB 11: Schools for Deaf and Blind - Changes oversight of schools and creates local boards of trustees. Changes admission process which could possibly exclude students with behavioral health needs.
*Passed House and Senate; became law without Governor’s signature
The following bills are at the same point in process since last “Highlights & Hot Topics”. The legislature has been focused on the budget process.
H77 – Driver’s License Designation/Autism – Directs Department of Motor Vehicles to develop a designation for drivers’ licenses that can be given upon request to persons with autism. It is entirely voluntary and can only be requested by the person who holds the driver’s license. Requires additional training for law enforcement and the database is only accessible to law enforcement. Many concerns raised by opponents have been addressed.
*Passed House; in Senate Rules Committee
H188 – Standards of Student Conduct - 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. These violations tend to disproportionately affect students of color and those with disabilities.
*Passed House; in Senate Rules Committee
H323 – Retain Adult Developmental Vocational Programs - Prohibits Department of Health and Human Services (DHHS) from reducing or eliminating services provided at Adult Developmental and Vocational Programs (ADVP) or Community Rehabilitation Programs (CRP) without (i) fully following procedures regarding stakeholder notification and input and (ii) appropriately funding a robust array of services that reflect choice.
* Passed House; in Senate Rules committee
H478 – Support Students with Disabilities - Creates funding mechanism for specialty day schools for students with I/DD and severe behavioral challenges. Allows for Individualized Education Program (IEP) teams to have specialty schools as an option on the continuum.
*Bill did not move in House, but funding is in House budget; hoping to get it in final budget
S171 – Dept of Public Safety Agency Bill – Updates our state’s "Silver Alert" system to make it clear that the statewide alert system includes all law enforcement agencies and individuals of any age that have conditions which would make them more vulnerable to abuse, physical harm, neglect, or exploitation. This clarifies that people with I/DD can be included in “Silver Alerts.”.
* Passed Senate; in House Rules Committee
H580 - Expand Day/Employment Options/IDD - The Department of Health and Human Services (DHHS) shall study the feasibility of adding coverage of a new Medicaid service, entitled Community Activities and Employment Transitions (CAET), that provides individualized services and supports for individuals age 16 or older with intellectual or developmental disabilities. The purpose of this new service is to expand meaningful day and employment services. DHHS must submit a report to the General Assembly by April 1, 2024.
*Introduced in early April; revised on June 6; referred to Appropriations Committee
Plain Language: The legislators are working on bills that affect people with disabilities. Advocates are supporting bills that would create more safety in the community for people and bills that would support students with disabilities in schools. Another bill requires the state to develop some new day services for people with IDD.
Your Support of Public Policies Makes Change Happen in North Carolina
The North Carolina Council on Developmental Disabilities (NCCDD) supports public policies that encourage the integration between people with developmental disabilities, those who support them, and the community. The Council does this by promoting policy information that educates and informs the people the Council serves and key decision-makers.
The North Carolina Council on Developmental Disabilities has set its 2023 policy priorities as:
- Eliminate the Innovations Waiver waiting list (Registry of Unmet Needs);
- Increase DSP compensation;
- Increase integrated, affordable and accessible housing options;
- Increase competitive integrated employment (CIE); and
- Increase access to intellectual and other developmental disabilities (I/DD) home and community-based services.
The Council’s plans, with your help, are to:
- Eliminate the waiting list within eight (8) years and meet the needs for everyone on the 17,000-person waiting list.
- Increase Direct Support Professional (DSP) pay rates to a minimum of $18.00 per hour to ensure a sufficient DSP workforce.
- Expand integrated, affordable and accessible housing options for individuals with I/DD in North Carolina.
- Increase competitive integrated employment (CIE) opportunities for all individuals with I/DD.
- Improve access to I/DD home and community-based services through the successful implementation of the Tailored Plans, care management, 1915(i), and expanded Medicaid.
You can help by:
- Contacting your North Carolina representative or senator.
- Joining the NCCDD Policy Education Committee meetings on the second Thursday of each month at 10:30 am.
- Joining the Meet the Need NC Lunch and Learns.
- Staying informed by signing up for the NCCDD newsletter and emails.
Nominations Open for Council’s Advocacy & Leadership Awards
Do you know a disability advocate who has made significant contributions in our state to change attitudes and support greater choices for a more inclusive North Carolina? Nominate yourself or these advocates for one of the North Carolina Council on Developmental Disabilities’ (NCCDD) awards!
The award categories are:
- The North Carolina Leadership Achievement Award: Presented to an outstanding NC self-advocate whose work has improved the quality of life for people with intellectual and other developmental disabilities (I/DD)
- Jack B. Hefner Memorial Award: In memory of this hardworking NCCDD member and father to a son with intellectual disabilities, this award celebrates the legacy of “Big Jack” and his commitment to families and people living with I/DD.
- Helen C. “Holly” Riddle Distinguished Service Award: Honoring our former Executive Director of 23 years, this honor is NCCDD’s highest recognition to celebrate the work of professionals with families in the state.
Three leaders in the disability community who passionately worked or continue to work to build a better North Carolina for people with intellectual and developmental disabilities (I/DD) will be chosen as the award recipients and honored at the November 2023 NCCDD quarterly meeting in Cary, NC.
Whether you want to nominate yourself, or a disability advocate from your community, submit your nomination application by July 14, 2023! Complete the nomination form for the awards found here.
A Request for Applications (RFA) is the way the North Carolina Council on Developmental Disabilities (NCCDD) asks for proposals for initiatives that will help the Council achieve the goals outlined in its Five-Year State Plan.
NCCDD has released two RFAs to continue expanding its work across the state for people with intellectual and other developmental disabilities (I/DD).
North Carolina Advocacy Leaders Network
The NC Advocacy Leaders Network initiative seeks to establish and maintain an organized network of developmental disabilities advocacy leaders made up of North Carolinians that are graduates from state and nationally recognized advocacy and leadership development programs. The NC Advocacy Leaders Network will identify, track, further train, and keep informed the graduates from these programs. As members of the Network, they will be informed and organized to educate others about intellectual and developmental disabilities (I/DD) issues important to them and all North Carolinians.
The funding for this RFA will be up to $90,000 each year, for up to three years, with a required minimum of 25% non-federal matching funds ($30,000) beginning October 1, 2023 and ending September 30, 2024. This RFA will address Goal 3, Objective A of the NCCDD State Plan to increase support to a statewide self-advocacy organization (or organizations) through leadership development and coalition participation.
Applications for the NC Advocacy Leaders Network RFA must be received by 5:00 pm (EDT) on July 10, 2023. For more information on how to apply and how to attend the Bidders’ Workshop, go to https://nccdd.org/initiatives/apply-here-for-open-rfas.html.
Historically Black Colleges and Universities Inclusive Postsecondary Education Planning
The Historically Black Colleges and Universities Inclusive Postsecondary Education Planning (HBCUs IPSE Planning) project is a three-year initiative to establish an IPSE program in North Carolina at one of the state’s 11 HBCUs. The aim of this initiative is to demonstrate and highlight promising best practices and program design for successful career skills development and employment within the initial IPSE program’s plan; demonstrate best practices regarding use of wraparound employment services and related supports, person centered planning, internships, and career experience that will be part of the college transition program within the initial IPSE program’s plan; establish partners and allies for the program outside of the college or university; and determine partners and collaborators within the college or university.
The funding for this RFA will be up to $80,000 each year for three years with a required minimum of 25% non-federal matching funds ($26,666), with year 1 (of 3) beginning October 1, 2023 and ending September 30, 2024. This RFA will address Goal 1, Objective B of the NCCDD State Plan to increase integrated competitive employment and long-term careers for people with I/DD through best and promising practices.
Applications for the HBCUs IPSE Planning RFA must be received by 5:00 pm (EDT) on July 19, 2023. For more information on how to apply and how to attend the Bidders’ Workshop, go to https://nccdd.org/initiatives/apply-here-for-open-rfas.html.
Self-Advocate Discussion Series Session: July 2023 – Comfortable Communication
Have you ever thought about how you identify as a person with a disability in the community? In July, the NC Council on Developmental Disabilities Self Advocate Discussion Series will open discussion about disability identity. We aim to have courageous conversations around identity preference, communication style, and how we acknowledge each other as self-advocates with intellectual and other developmental disabilities (I/DD).
The webinar will make space for a spirited discussion with multiple points of view. Together we can be brave enough to share our thoughts, while being curious enough to listen and understand beliefs that may be different from our own.
Join NCCDD for this exciting edition of the Self-Advocate Discussion Series on Wednesday, July 19. Click here to register
