• • • • • Letter from the Executive Director
          
          
        • Public Policy (as of August 8, 2022)
          
          
        • Hear. Share. Act. Events to Gather Stories on I/DD Landscape Across the State
          
          
        • Update & Conversation on Medicaid Transformation for I/DD Takes Place in Wilmington
          
          
        • Assistive Technology Exhibition 2022
          
          
        • En Español - Agosto 2022
          
          
        • Audio - Highlights and Hot Topics

 

 

Letter from the Executive Director 

We are in a crisis! Things are not okay. 

That was the message of Jill Jacobs, Commissioner of the Administration on Disabilities at ACL (Administration for Community Living). She spoke at the July 2022 National Association of Councils on Developmental Disabilities (NACDD) Conference.  

We are in a national emergency. 

Commissioner Jacobs said she is experiencing this crisis in her own family. She implored all of us to talk about what this means for real people in our community. She said individuals with disabilities have to choose “between getting out of bed today and eating because [a] caregiver can only be [present] for x amount of time.” She talked about individuals getting pressure sores and family members quitting jobs to care for loved ones.

Of course, we know this reality in North Carolina. Friends of ours are facing these dangerous choices every day. This is because we have both a Direct Support Professional workforce shortage and a waiting list of over 15,000 individuals for the Innovations Waiver.

The extent of this crisis hit home for me recently when we sent out a single email seeking stories of individuals and families in crisis in North Carolina. That one email was forwarded repeatedly by email and social media across the state. We were overwhelmed with people who wanted to share their stories. 

We could not capture every story at that moment. But . . . NCCDD is funding an initiative that is focused on raising awareness and helping individuals and families share their stories. 

Meet the Need NC is a new initiative working to raise awareness of the unmet needs of the I/DD community in North Carolina. It is hosting two inaugural events in Boone and Greenville:

• September 10 in Boone, NC from 9:30am - 12:30pm - Register here 
• September 17 in Greenville, NC from 9:30am - 12:30pm - Register here 

The meetings will be held in person as well as online. The events will include stories, music, policy updates, and resources to bring attention to what people are experiencing in our community.  It will also include opportunities for individuals and families to learn how to share their stories.

We are in a crisis, but we are in this crisis together. Let’s work together to make a difference for our community.

Talley Wells, Executive Director

 

Public Policy (as of August 8, 2022)

STATE

Legislature

As reported in the last Highlights and Hot Topics, the legislature passed a budget adjustment act during the short session. There was hope that Medicaid expansion would be included in the budget adjustment, but it was not. However, the Senate passed Expanding Access to Healthcare, and the House passed the Rural Health Care and Savings Act. While both proposed to give healthcare coverage to more people in North Carolina who do not qualify for coverage on the healthcare marketplace, other differences could not be resolved between the Senate and House during the short session. The good news is there appears to be agreement that the state needs to expand healthcare coverage. Discussion is expected to continue, and the legislature could be called back into session after the fall elections to take up this issue.

The NC legislature will return for a long session in January.  

Plain Language- The legislature met and made some changes to our state budget. Advocates hoped they would make healthcare more available in NC. The legislature may come back together later in the fall to discuss expanding healthcare. 

Crisis Response

In 2020, Congress designated the new 988 dialing code to be operated through the existing National Suicide Prevention Lifeline. This is one of several steps at the federal level to improve crisis support. In NC, the ‘988’ number went live on July 16. The National Suicide Prevention Lifeline (NSPL), operated in NC by REAL Crisis Intervention out of Greensboro, is not going away.  The ‘988’ number will direct the caller to the NSPL, which has expanded beyond suicide prevention to broader mental health crises. Calls, chats, and texts are all available. There are opportunities for more training for the crisis response workforce from a Substance Abuse and Mental Health Services Administration (SAMHSA) grant. There have been discussions about the need to ensure that ‘988’ crisis call responders receive training on intellectual and other developmental disabilities, and Autism Spectrum Disorder. 

Plain Language – There is a new number that people in NC can call if they have a mental health crisis. People can call ‘988’ and be connected to someone who can help. 

Transition at Division of Mental Health, Developmental Disability, and Substance Abuse Services (DMHDDSA)

Following the departure of Deepa Avula, who was serving as Director of DMHDDSA, Dave Richard will cover this Division during the transition to a new Director. Mark Benton will also be assisting. They aim to identify someone for this position within the next three months. Priority is on someone who will stay and create stability in the Division. 

Plain Language – North Carolina is looking for a new Director of DMHDDSA. While they are looking, Dave Richard will support the people who work at DMHDDSA.

FEDERAL

U.S. Department of Transportation Creates Airline Passengers with Disabilities Bill of Rights

On July 11, the Department of Transportation released its Airline Passengers with Disabilities Bill of Rights. This document summarizes rights provided by the Air Carriers Access Act and its implementing regulations. The rights listed include:

1.     The Right to Be Treated with Dignity and Respect.

2.     The Right to Receive Information About Services and Aircraft Capabilities and Limitations.

3.     The Right to Receive Information in an Accessible Format.

4.     The Right to Accessible Airport Facilities.

5.     The Right to Assistance at Airports.

6.     The Right to Assistance on the Aircraft.

7.     The Right to Travel with an Assistive Device or Service Animal.

8.     The Right to Receive Seating Accommodations.

9.     The Right to Accessible Aircraft Features.

10.   The Right to Resolution of a Disability-Related Issue.

 

Plain Language:
The U.S. Department of Transportation outlined a Bill of Rights with 10 rights for all airline passengers with disabilities. This living document will help airlines follow federal law, making it easier to travel if you are a person with a disability. 

Budget and Appropriations  

Senate Democrats, after weeks of negotiations to revive the core of their election-year agenda, passed a spending bill.  The Inflation Reduction Act of 2022 will make a historic down payment on deficit reduction to fight inflation, invest in domestic energy production and manufacturing, and reduce carbon emissions by roughly 40 percent by 2030. More than $300 billion would be invested in energy and climate reform, the largest federal clean energy investment in U.S. history. On health reforms, the bill takes on making prescription drugs more affordable. It allows Medicare to negotiate prescription drug prices. The bill also extends the expanded Affordable Care Act program for three years through 2025.

Plain Language
The Senate Democrats also introduced a bill to help pay for increased goods costs, address recent climate changes, and reduce drug prices. 

ABLE Age Adjustment Act 

On Wednesday, June 22, the Senate Finance Committee met to mark up the Enhancing American Retirement Now Act (EARN Act, which is a part of the larger retirement reform bill (SECURE 2.0). The ABLE Age Adjustment Act was included in the EARN Act as part of the markup. The ABLE Age Adjustment Act will increase the age eligibility for ABLE accounts from 26 to 46, giving millions of people with disabilities the chance to save money without losing eligibility for federal benefits. ABLE accounts are tax-free savings accounts for people with disabilities to save money while not disqualifying them from federal benefits like Supplemental Security Income or Medicaid. The Association of University Centers on Developmental Disabilities (AUCD) signed on to this  Statement for the Record from the Consortium for Constituents with Disabilities. 

Plain Language:
ABLE accounts are savings accounts for people who develop their disability before age 26, and they let people save money without risking losing federal benefits such as Supplemental Security Income or Medicaid. The ABLE Age Adjustment Act would increase the eligibility age to 46, giving more people access to these accounts.  

U.S. Department of Education Releases Guidance on School Discipline  

The U.S. Department of Education’s Office of Civil Rights (OCR) and Office of Special Education and Rehabilitation Services (OSERS) have released guidance to ensure that students with disabilities are not discriminated against when they are disciplined in school. Students with disabilities are suspended, expelled, restrained, secluded, and subjected to discipline and police attention at higher rates than their peers. The guidance from OCR “describes schools’ responsibilities under Section 504 to ensure nondiscrimination against students based on disability when imposing student discipline.” The Question and Answers from OSERS offer to all education stakeholders, including families and educators, the support needed to implement the Individual with Disabilities Education Act’s (IDEA) “discipline provisions in a way that upholds the law’s promise of equality of opportunity.” 

Plain Language 
The U.S. Department of Education released guidance on the rights of students with disabilities in schools when they are disciplined. The documents should help to make sure students with disabilities are safe in school and receive the education they deserve. 

U.S. AbilityOne Commission Ends Payment of Subminimum Wages on AbilityOne Contracts 

The AbilityOne Program, which is a program that employs approximately 40,000 individuals with disabilities, has issued a final rule that prohibits the payment of sub-minimum wages on contracts with the AbilityOne Program. The Ability One Program was established in 1938, and the Program is administered by the U.S. AbilityOne Commission, an independent Federal agency. The Commission has designated the National Industries for the Blind and SourceAmerica as nonprofit agencies to help administer the Program. The program’s mission is to employ people who are blind or have significant disabilities by providing work that delivers products and services to Federal agencies. The rule goes into effect on October 19, and nonprofits who employ people with disabilities through the AbilityOne Program can request an extension of up to 12 months to comply with the rule.  

Plain Language
AbilityOne is a program that employs 40,000 people across the country. The federal agency has issued a new rule to ensure that people employed through this program are not paid less than the minimum wage. The rule goes into effect in October of this year. 

House Energy and Commerce Republicans Release Report on Disability Policies in the 21st Century 

The Republicans on the Energy and Commerce Committee, under the leadership of Representative Cathy McMorris-Rodgers (R-WA), have released a report on the barriers for people with disabilities in the 21st century. The report, Disability Policies in the 21st Century: Building Opportunities for Work and Inclusion, states that three primary barriers “keep people with disabilities from living up to their full potential and contributing to their communities.” These include: 

 

“1. Ensuring access to long-term services and supports by eliminating waitlists for such care in Medicaid and making coverage options more affordable for those not covered by Medicaid;  

2. Making communities and daily life more accessible for people with disabilities by supporting access to assistive technologies and enforcing accommodation requirements in the Americans with Disabilities Act (ADA) and section 504 of the Rehabilitation Act of 1973 (Section 504) in health care settings; and  

3. Moving the workforce toward integrated employment by eliminating the subminimum wage for people with disabilities and providing supports and funding opportunities for accommodations in the workplace.”  

 

The report also states that the House Republicans on the Energy and Commerce Committee are open to receiving public comment on how to develop policies and propose solutions that Congress should act on to improve the lives of those with disabilities.

The report discusses the importance of access to long-term services and supports, including home and community-based services, accommodations in daily life and the community, and barriers to integrated employment. Each section summarizes numerous issues under that heading and includes specific requests for information.  

Plain Language
House Republicans on the Energy and Commerce Committee, led by Representative Cathy McMorris-Rodgers (R-WA), have released a report on the obstacles that people with disabilities face today. The report outlines solutions for these problems, like banning subminimum wage and making it easier to receive home and community-based services. The report also asks for people to provide comments on how to address these barriers. 

 

Hear. Share. Act. Events to Gather Stories on I/DD Landscape Across the State

Currently in North Carolina, individuals who qualify for the Medicaid Home and Community-Based Services (HCBS) Medicaid Waiver to receive long-term care services and supports in their home or community, as opposed to an institution, could have as much as 12 years or more to wait for these services. These individuals are on a waitlist called the Registry of Unmet Need (RUN) which has approximately 15,000 North Carolinians on its roster.

Meet the Need NC, an initiative of NCCDD, is hosting two events in Boone and Greenville in September. 

Hear. Share. Act. is a story gathering and advocacy event for people with intellectual and other developmental disabilities (I/DD) and their families living in North Carolina. The events allow people with I/DD, family members, DSPs, and other stakeholders to share the impact of not having their or their family member's needs met.

The events will take place both in person and online:

• September 10, 9:30 a.m. to 12:30 p.m. at Reich College of Education Building, 151 College Street, Boone. Register at https://www.eventbrite.com/e/hear-share-act-boone-nc-tickets-378015553697.
• September 17, 9:30 a.m. to 12:30 p.m. at Unity Church, 4301 South Charles Boulevard, Greenville. Register at https://www.eventbrite.com/e/hear-share-act-greenville-nc-tickets-378064670607.

The North Carolina Council on Developmental Disabilities (NCCDD) has funded a four-year grant for the Mental Health Transformation Alliance (MHTA) to develop and carry out a coordinated approach to positively impact the Medicaid Innovations Waiver waiting list in North Carolina. The Leadership Alliance of Neurodevelopmental Disabilities (LAND), a program of MHTA, is leading the groundbreaking initiative.

The goals of the grant are not only to increase the number of Waiver slots to assist more people with I/DD, but also to advocate for other ways the state can address the unmet needs of people with I/DD. The LAND program has established a 45-person Advisory Council, bringing together agency leaders, family advocates, individuals with I/DD, research teams, and community organizations with a unified focus on educating, informing, and building grassroots efforts around meeting the unmet needs of individuals.

NCCDD encourages anyone with I/DD and their family members to register and attend one of the story gathering/advocacy events listed above. To read more about this initiative, please click here.

 

Update & Conversation on Medicaid Transformation for I/DD Takes Place in Wilmington

North Carolina Council on Developmental Disabilities (NCCDD) Executive Director Talley Wells, along with Council members Dr. Charlrean Mapson and Cheryl Powell, and Price Cathedral Special Needs Ministry held a conversation on Medicaid Services for Individuals with Intellectual & Developmental Disabilities (I/DD) in Wilmington, NC on August 4.

With nearly 25 people attending this hybrid event (online/in-person), the talk centered around individuals with I/DD. The latter are waiting for Innovations Waiver services with a discussion on possibly receiving services from Medicaid and not having to wait for a waiver slot to become available. 

Dr. Mapson, who serves as the pastor of Price Cathedral Church which offers a special needs ministry, felt this discussion was vital. “When information is presented at our Council meetings that I believe will benefit our community's special needs population, I bring the information/resources to the area,” explained Mapson. “I believe it is important for our government officials to expand Medicaid. It would provide better healthcare for those with disabilities and free up money for other uses in the state,” Mapson added.

In addition, those gathered also discussed how the new wage increase of $18/hour for DSPs (Direct Support Professionals) is not being offered in all parts of the state.

 

 

Assistive Technology Exhibition 2022

The North Carolina Department of Health and Human Services (NCDHHS) will hold its third annual AT Virtual Vendor Expo on September 29, 2022 at 9:00 a.m.

More information will be coming soon about each session for the Expo. Click the link below to Register. Registration is required to participate. 

https://go.ncsu.edu/2022-at-expo.  For questions, contact: Sonya Clark: [email protected], 919-664-1244.

All are invited and encouraged to participate, including individuals with disabilities, family members/caregivers, employers, local/state/national resources providing support to individuals, senior living providers, students, parents of children with special needs, older adults, VR Counselors, therapists, and educators.

 

 Audio - Highlights and Hot Topics