May 2023 Highlights and Hot Topics
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- Letter from the Executive Director
- Public Policy (as of May 09, 2023)
- Guardianship Rights Legislative Day Keeps Focus on Senate Bill 308 as it Moves to the House
- Ground, Water, Air Transportation: What Do We Need and Want as Self-Advocates
- Supported Living Conference "Learning and Living Together" Covers Housing, Transportation, Technology and More
- June’s Hear. Share. Act: A Lunch & Learn Disability Advocacy Series Tackles the Registry of Unmet Needs
- En Español - Mayo de 2023
- Audio - Highlights and Hot Topics Audio - Highlights and Hot Topics
- Letter from the Executive Director
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Letter from the Executive Director
In lieu of Mother’s Day, May is the perfect month to thank mothers and all parents, guardians and caregivers of individuals with intellectual and other developmental disabilities (I/DD).
I have been fortunate to know moms across North Carolina who have dedicated much of their time, love and lives to their children with developmental disabilities. Our film, Unmet, features several moms, parents and caregivers.They each speak with passion and fear for what will happen to their loved one when they pass.
Even as we celebrate moms and parents, we must also stress the importance of independence, “dignity of risk,” and informed choice for individuals with I/DD. Adults with I/DD should have informed choices and opportunities to live and work in the community. To do this, we need to robustly fund community living and employment supports through the Innovations Waiver, 1915(i), competitive integrated employment (CIE) and the other I/DD systems.
In North Carolina, we have a long way to go to have robust funding that meets our community’s needs. Yet, I have confidence that we will achieve our goals because we have extraordinary moms and parents advocating every day alongside individuals with I/DD to make our state better. I see them every Thursday take on the Direct Support Professional (DSP) workforce crisis. I hear their daily advocacy to end the waiting list. They are making a difference!
Thank you, moms! Thank you, parents and caregivers! Happy mother’s month!
Talley Wells, Executive Director
Public Policy (as of May 9, 2023)
FEDERAL
Limit, Save, Grow Act (HR 2811): This bill, which includes new work rules for Medicaid enrollees, was passed by the US House on April 26. This was offered in exchange for lifting the debt ceiling. The bill would require all Medicaid beneficiaries ages 19–55 to meet an 80-hour per month work-reporting requirement. Failure to meet the requirement would stop federal funds for that person and allow states to terminate coverage. This bill applies to all Medicaid recipients, including those on Supplemental Security Income (SSI) and Home and Community-Based Services (HCBS) waivers. In order to be exempt from the work rules, people with disabilities would need a doctor or other medical professional to deem them “physically or mentally unfit for employment.”
While the plan is not expected to move forward in the Senate, it is disheartening and concerning that services for people with disabilities would be compromised in this way. Representatives and Senators need to hear how this type of bill would hurt people with disabilities.
This bill passed the House and is now in the Senate.
Direct Care Workforce Bills Introduced
HR 2941/S 1332 – Recognizing the Role of Direct Support Professionals (DSP) Act: Introduced by Senators Maggie Hassan (D-NH) and Susan Collins (R-ME), along with Representatives Brian Fitzpatrick (R-PA) and Joseph Morelle (D-NY), this bill would create a standard occupational classification (SOC) code for Direct Support Professionals (DSPs). Currently, DSPs do not have their own SOC code. Having a specific code could help provide the data needed to set adequate rates.
Introduced to the House and Senate but not passed.
S 1298 – Supporting our Direct Care Workforce and Family Caregivers Act: This bill, introduced by Senator Tim Kaine (D-VA), would support the recruitment, training, and retention of direct care workers and family caregivers, as well as provide grants and technical assistance to states through the Administration on Community Living
Introduced to the House and Senate but not passed.
Plain Language: Representatives and senators in Congress are writing bills that affect people with disabilities. One that was passed in the House would make it harder for people to keep their services because it would require them to work. Advocates are fighting against this. There are other bills that would help the workers who support people with disabilities. Advocates are hoping these become laws.
Centers for Medicare & Medicaid Services Proposed Rules
This effort includes key changes to the rules governing HCBS 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 HCBS on an annual basis and revise service plans accordingly. In addition, the rule would require that at least 80% of what Medicaid pays for personal care, homemaker services, and home health aide services directly compensate the person providing the service rather than going towards administrative funds or profit. And, states would need to publish the average hourly rate paid to direct care workers.
The regulation also includes several new mandates for states. This includes reporting the length of their waiting lists, whether services are accessible once the recipient is granted a waiver, and various quality measures in their HCBS programs. Center for Medicare & 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 HCBS recipients in traditional Medicaid plans so they could file complaints against a provider or the state, much like the current process of managed care plans.
In addition to the Access Rule, CMS is also proposing the Managed Care Access, Finance and Quality 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 annual secret shopper surveys to ensure that managed care plans are complying with appointment wait time standards and that their provider directories are accurate.
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 those services.
STATE
The General Assembly is working on the state budget for 2023-2025 biennium. The House passed a budget which includes:
- 250 Innovations Waiver slots
- Funding for DSP wage increases in Innovations Waiver and Intermediate Care Facilities (ICF)
- Funding for the Medicaid “rebase” and ongoing Medicaid Transformation (tailored care management and 1915i services)
- Increases for teacher/school staff salaries
- Funding for new I/DD programs at state universities
NCCDD and other I/DD stakeholders were hoping to see more Innovations slots to address the 16,000-person waitlist.
The Senate is currently working on their version of the budget. The Senate budget is expected by the end of May. Following the Senate budget approval, a Conference Committee will be appointed to work out the differences.
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 DSP wages, but only 250 Innovations slots were approved when most people were hoping for 1,000 slots. The Senate is working on their budget.
Bills
HB 11: Schools for Deaf and Blind: This bill changes oversight of schools and creates a local board of trustees. This would change the admissions process and could result in possible exclusion of students with behavioral health needs.
Passed House and Senate; became law without Governor’s signature.
H77 – Driver’s License Designation/Autism: This bill directs the Department of Motor Vehicles to develop a designation for driver’s licenses that can be given to a person with autism upon request. It is entirely voluntary and can only be requested by the person who holds the driver’s license. It also requires additional training for law enforcement. The database would only be accessible to law enforcement, but many concerns have been raised by opponents that have been addressed.
Passed House; in Senate Rules Committee.
H76 – Access to Healthcare Options: This is the Medicaid expansion bill. This bill extends Medicaid benefits to people who have been in a healthcare coverage gap and extends coverage to people under 133% of the federal poverty level who have not previously been eligible.
Signed into law on 3/27/23.
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. This would disproportionately affect students of color and those with disabilities.
Passed House; in Senate Rules Committee.
H323 – Retain Adult Developmental Vocational Programs: This bill prohibits DHHS from reducing or eliminating services provided at Adult Developmental and Vocational Programs (ADVP) or Community Rehabilitation Programs (CRP) without fully following procedures regarding stakeholder notification and input, as well as appropriately funding a robust array of services that reflect choice.
Passed House; in Senate Rules committee.
H478 – Support Students with Disabilities Act: The act creates funding mechanisms for specialty day schools for students with I/DD and severe behavioral challenges. It also allows for IEP teams to have specialty schools as an option on the continuum.
Bill did not move in the House, but funding is in the House budget; there is hope to get it in the Senate budget.
S171 – Dept of Public Safety Agency Bill: This bill updates North Carolina’s "Silver Alert" system. It clarifies 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.
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.
Guardianship Rights Legislative Day Keeps Focus on Senate Bill 308 as it Moves to the House
The Senate Bill 308 on guardianship rights (SB308) has moved from the North Carolina Senate to the House. Multiple organizations, including NCCDD, continue to advocate to legislators and educate and inform the community what this bill means for people with I/DD.
The bill was discussed on April 25 at the Guardianship Rights Legislative Day event presented by AARP North Carolina, UNC Cares and NCCDD. Linda Kendall Fields, Cares Director at the UNC Chapel Hill School of Social Work, was featured for her work spearheading NCCDD’s Rethinking Guardianship initiative and the Making Alternatives to Guardianship a Reality grant in North Carolina. Fields spoke about three of the main components of SB 308. This included a mandate to consider guardianship alternatives that would have the least restrictions for people facing potential guardianship, an assurance that all parties are fully informed about relevant rights before and after a guardianship, and the ability for courts to monitor guardianships and call for hearings if needed.
According to the Fiscal Research Division of the NC General Assembly, 5,786 people are currently under North Carolina public guardianship. This number represents an estimated one-third of the potential population, many of whom are not tracked by the state’s court system. NCCDD’s Rethinking Guardianship initiative agenda is based on the basic principles of autonomy, liberty, freedom, dignity, presumption of competence and a right to lifetime decision-making support.
Rethinking Guardianship’s premise is that not all vulnerable adults need guardianship and that less restrictive alternatives are preferred and should always be considered first. This concept may apply to areas such as community support services and supported decision-making. Other areas and alternatives are detailed on the Rethinking Guardianship website.
NCCDD’s Rethinking Guardianship initiative has several publications for individuals to utilize including:
- Supporting Choice and Self-Determination: A Guide
- Supporting Choice & Self-Determination: Less Restrictive Alternatives to Guardianship
- Making Alternatives a Reality in North Carolina: Year 2 Progress Update
In addition, various videos about North Carolinians who have dealt with guardianship issues, created by UNC Cares, can be viewed here.
There are many additional pieces that advocate organizations and individuals, including NCCDD, will work towards in the future. This includes more statutory reform in regards to legal language and terminology, the right to counsel, and reform of the guardian ad litem system. Additional efforts will go toward working with the staff and guardians of those living in state developmental centers through Medicaid/Money Follows the Person funding. Also, there is a need to address education and methodology on updating certain professions and systems that affect supported decision-making and guardianship. This includes clerks and the legal system, hospitals and the healthcare system, the social service system and the general public, including those who may petition for guardianship. NCCDD also hopes to enhance maintenance of the Rethinking Guardianship website.
For more information, read this article from NC Health News about what the revamped statutes would offer.
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Ground, Water, Air Transportation: What Do We Need and Want as Self-Advocates
In June, the North Carolina Council on Developmental Disabilities’ Self-Advocate Discussion Series will discuss transportation and travel for people with disabilities. Topics will include ground, water, and air transportation as well as public, private, accessible, and community-supported transportation systems. An expert panel will share experiences, insight and advocacy tips.
As always, the Council wants to hear from YOU! What does ideal transportation mean to you as a self-advocate? What does the State need more of when it comes to getting around and going where we want to and when we want to? If you are passionate about improving transportation and travel for people with disabilities in North Carolina, please join us on Wednesday, June 21 from 1:00-2:00 p.m. Be sure to register for the event using the link provided here.
On April 20, Liberty Corner Enterprises, Incorporated — the contractor for the Supported Living: A How-To Guidebook initiative — and NCCDD hosted the Supported Living Conference in Asheville, NC.
The conference shared best-practice models being implemented by I/DD providers across the state. Keynote speaker Steve Strom — Director of Money Follows the Person with the NC Department of Health and Human Services — spoke of his experiences and perspectives on North Carolina’s unique, state-funded initiatives that are enhancing HCBS. The other keynote speaker, Linda Kendall Fields — Cares Director at the UNC Chapel Hill School of Social Work — shared her experiential knowledge of the work being done to support people with I/DD to live successfully in their own homes.
Workshops covered person-centered planning, housing and transportation needs, technology support as well as a self-advocate panel and provider panel.
NCCDD’s Supported Living Guidebook helps individuals with the highest level of needs successfully access and use the Supported Living Innovations Waiver services. These services help individuals with I/DD live in a home and community of their choice with supports.
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The next Meet the Need NC Hear. Share. Act. Lunch & Learn Series will take place on June 20 from 12:00-1:00 p.m. and will focus on the registry of unmet needs. Every third Tuesday of the month, this series works to help people gain basic knowledge of the systems, programs, and services that serve individuals with I/DD.
Anyone who wants to improve the lives of people with disabilities is encouraged to attend this online discussion. Registration can be found here.
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