June 2023: Climbing the Same Mountain Together

In this month’s edition of MEET THE NEED NC ENEWS:

Message from LAND, the Backbone of Meet the Need NC

Transforming the I/DD LANDscape in North Carolina

“Waiting” is the thread that weaves our entire community of individuals with intellectual and/or developmental disabilities (I/DD) together – whether by age, location, ethnicity, level of need, or type of disability. Some people wait for an accurate diagnosis, specific services and support, or even a more helpful specialist. Others just wait for a better day tomorrow.

We are linked by a continuum of care necessary for those with I/DD throughout their lifespans. We share a common goal: A robust array of services and supports (employment, housing, social, caregivers, etc.) for the fullest life possible for those with I/DD and their families at each stage of their lives.

Graphic of all types of people holding hands and the words Collective Impact.Let us join together to build a community that transforms the systems in North Carolina to meet the unique I/DD needs for our generation and all those who follow. Collective impact is a method to drive system change. This is the model that Meet The Need NC is using to transform the LANDscape of I/DD for all in our state.

What is collective impact? Watch our video:  The Effectiveness of Collective Impact.

This month’s newsletter includes links to the recording of the June Lunch & Learn webinar and other resources about the Registry of Unmet Needs. We include information about a young man who has the Innovations Waiver and developed a podcast called “The Waiting Room” to inform and help others who are waiting for a Waiver. There is also an op ed article for our LENS blog from a member of the NC Waiver Action Team. 

Image of blue mountains with the sentence "Climbing the same mountain together to transform the I/DD LANDscape in NC!Please join us in July for our next webinar about the disability rights movement: From ADA to Olmstead to the Innovations Waiver – Where Are We Now? Registration information is provided in this newsletter. 

Finally, let’s not forget that July marks the anniversary of the passage of the Americans with Disabilities Act (ADA)! On July 26, 1990 – 33 years ago – the ADA was signed into law. It is a historic civil rights law that protects the rights of people with disabilities by making sure that they have the same rights and opportunities as everyone else. Use this ADA Anniversary Tool Kit to celebrate and share information with family and friends during July!

Meet The Need NC is an initiative to change the intellectual and other developmental disabilities (I/DD) landscape across the state and is funded by the North Carolina Council on Developmental Disabilities. Meet The Need NC is driven by the Leadership Alliance for Neurodevelopmental Disabilities (LAND), a program of the 501c3 nonprofit, Mental Health Transformation Alliance (MHTA). 

June Webinar Recap: The Registry of Unmet Needs

The NC Medicaid Innovations Waiver helps those with intellectual and/or developmental disabilities (I/DD) to receive services and supports in their own community. It helps individuals live as independently as possible. The Innovations Waiver is a home and community-based service (HCBS) model.

Hear. Share Act. event announcement about the June 2023 event being held on June 20 from noon to 1PM. The topic is The Registry of Unmet Needs.The NC General Assembly allocates Innovations Waiver slots. If a Waiver slot is not available, an individual goes on a waiting list until a slot is available. The NC Innovations Waiver waiting list is also called the Registry of Unmet Needs or simply, the RUN. There are many more waiting (approximately 17,000) for the Innovations Waiver than have the Waiver (approximately 14,000). 

When enacted, hopefully this year, Medicaid Home and Community-Based Behavioral Health Services, also called 1915(i) services, may be available to those on the Registry of Unmet Needs, although the individual must have Medicaid to be eligible to be assessed for services. A Waiver slot brings Medicaid coverage, but one does not need to wait until receiving a slot to apply for Medicaid. 

On June 20, 2023, the Registry of Unmet Needs was the topic of the Meet The Need HEAR. SHARE. ACT. Lunch & Learn webinar series. Speaker Jenna Flynn from the Autism Society of North Carolina provided a wealth of information followed by a question-and-answer session. 

Jenna is also developing videos for each Local Management Entity/Managed Care Organization (LME/MCO) about how to check your status on the RUN or how to get on the RUN. The processes differ with each of the six LME/MCOs so a video is being made for each one. We will be sending these to all June webinar registrants as soon as they are completed. They will also be included in next month’s newsletter.

Register for the July Lunch & Learn Webinar!

Hear. Share. Act. Webinar announcement for the July 18 webinar.

We meet on the third Tuesday of every month at noon with new topics brought to you by thought leaders in the I/DD community.

Throughout our series, Meet The Need NC intends to create a basic understanding of the unmet needs of those living with I/DD in North Carolina. Register for one or all of our Lunch & Learns: HEAR. SHARE. ACT: A Lunch & Learn Disability Advocacy Series.

Our next Lunch & Learn will be on July 18 from 12pm – 1:30pm. July’s topic is From ADA to Olmstead to Innovations Waiver: Where are We Now? featuring Holly Riddle from DHHS, Virginia Knowlton Marcus from Disability Rights NC, and Marti Knisley, Independent Reviewer.

Click Here to Register!

LENS: Lived Experience Network Speaks

LENS, which stands for Lived Experience Network Speaks, is a blog provided by Meet The Need NC from our LENS Advisory Group. LENS includes individuals with intellectual and/or developmental disabilities (I/DD) experience, including people with I/DD, families, and caregivers. We provide a space for them to share freely, but these opinions do not necessarily represent those of Meet The Need NC or all members of the LENS Advisory Group.

Logo for LENS Lived Experience Network Speaks blog
The Burgher King

This month’s guest blogger is Bill Donohue who shares his thoughts on the issues surrounding the Waiver waiting list.

Group photo of Bill Donohue, Deb Woolard, Sarah Potter, Jeremy Donohue, and Matt Potter
Members of the North Carolina Action Team. Back row:
Bill Donohue, Deb Woolard, Sarah Potter. Front row:
Jeremy Donohue, Matt Potter

The recent Tony awards brought back the movie Camelot as a favorite and it made me pause. 

“It’s true, it’s true, Crown has made it clear!” And “I wonder what the King is doing tonight?” And more importantly, “What do you think he and the other burghers imagine ‘the simple folk’ do, to help them escape when they’re blue?”  

After two decades our King knows his general assembly of fellow burghers have ducked, denied and kicked the can down the road for people with disabilities. So, what must he be thinking?  What merriment is he pursuing tonight? And what must the simple folk do who have waited for home and community-based services for 10, 15 or more years? “Fie on goodness!”

Our son, Jamie, waited 22 years for waiver services and now finds there are no providers available. What is the King offering Jamie? Jamie was only one of the estimated 17,000 simple folk who for no fault of their own waited and continued to wait. “Fie on Goodness!”

Another young man, Matt, has waited 14 years yet still does not get services. Hardly a simple fellow with a degree from Wake Forest, but a community leader like many with disabilities who could happily pay taxes to the King if only a little support was available. The Crown has missed the Lydian Lion.

Bob and Judy have twins who have already waited 10 years. No services in sight. They are on the Autism spectrum and yearn for full expression and Judy is desperate to return to work. The Registry of Unmet Needs projects another 40 years to clear the people on the waiting list at the rate offered by this year’s General Assembly at 250 “slots” per year.

The King sleeps well tonight. The rain in North Carolina does fall after sundown. Ask Maggie, a mom who across town wakes 5-7 times a night as her daughter has seizures, wondering if this time will be a call to EMS she can’t afford and ponders herself when sleep will arrive.  

What else do the simple folk do, to pluck up the heart and get through? They sit around and wonder what royal folks would do if they were aging on social security; hoping to outlive or house or care for their disabled adults.

Our burghers sleep soundly on 6 billion dollars in reserves which can be lanced for 18 billion in federal Medicaid match whenever they decree it. 

The King who fought a dragon and hacked it in two – what’s he wishing tonight? He’s wishing he was in “Tobaccoville, fishing tonight!” The simple folk are not simple at all, but they are rightly puzzled about the King’s oath of office and his realm over desperate peasants.

Don’t let it be forgotten that once there was a spot – a shining moment. Ask every person if he or she has heard the story, and tell it strong and clear – that once there was a fleeting wisp of glory … called North Carolina.

About the author: Bill Donohue is the father of an adult son who has the Innovations Waiver. Bill is also one of the founders of the North Carolina Action Team, a grassroots organization with the goal to create a statewide push for equality in funding for community-based services for people with I/DD so that they can lead full and meaningful lives. The North Carolina Action Team encourages individuals with I/DD and their families to share their story so that legislators can better understand the need for services.

Policy Updates

Logo for CCR Consulting

Sarah Pfau, JD, MPH,
Senior Consultant
CCR Consulting

Policy updates as of June 30, 2023

1915(i) State Plan Option Update

Note from LAND: As of June 30, we have information that the Centers for Medicare and Medicaid Services (CMS) has approved its proposed 1915(i) State Plan Option for NC. As of the publication of our June newsletter, we have not received a formal announcement from NC DHHS. Disability Rights NC has developed an easy-to-understand info sheet about 1915(i) found at  https://disabilityrightsnc.org/news/1915i-services/.

To date, the Division of Health Benefits (State Medicaid agency) has been projecting a July 1, 2023 starting date. LME/MCOs will have 90 days to implement 1915(i) after the State has a CMS approval date for go-live.

  • The May 2023 NC DHHS Provider Playbook Fact Sheet contains a lot of helpful information about 1915(i).
  • You can learn more about 1915(i) State Plan Options here on the CMS website.
  • The latest round of draft Medicaid clinical coverage policies for the 1915(i) State Plan Option are posted here for public notice and comment:
  • Respite (comment deadline July 3)
  • Individual Placement and Support (comment deadline July 8)

Submit comments for policies by emailing: medicaid.public.comment@dhhs.nc.gov.

New NC Department of Health & Human Services (DHHS) Comprehensive Independent Assessment Entity for the Community Alternatives Program (CAP)/C, CAP/DA, PCS, and PASRR Level II

On June 15, 2023, NC DHHS announced that they awarded Keystone Peer Review Organization, Inc. (Kepro) the contract as the Comprehensive Independent Assessment Entity (CIAE) for the NC Medicaid program.  Beneficiaries and providers will have a single point of entry for obtaining long-term services and supports (LTSS) programs in NC Medicaid Direct [for fee-for-service services that are carved out of Medicaid managed care]. The point of entry will be branded as NC Medicaid Linking Individuals & Families for Long Term Services and Supports (LIFTSS).

NC LIFTSS will:  

  • Process referrals;  
  • Perform option counseling;
  • Conduct assessments and quality assurance reviews;
  • Provide service plan management and customer service; and
  • Conduct provider training for the following LTSS programs: State Plan Personal Care Services (PCS), Community Alternatives Program for Children (CAP/C) and Community Alternatives Program for Disabled Adults (CAP/DA). 

NC LIFTSS will also provide management and oversight for the Pre-Admission Screening and Resident/Review process (PASRR) Level II and serve as North Carolina’s Transition of Care Coordinator (TCC) for nursing home residents who request information about options for less restrictive care settings.  

Over the next few months, NC Medicaid will conduct a phased implementation of NC LIFTSS and informational webinars for providers and beneficiaries. For more information, see the press release: NCDHHS Awards Contract for Comprehensive Independent Assessment Entity

The Centers for Medicare and Medicaid Services Home and Community Based Services (CMS HCBS) Access Rule Notice and Comment Period Ending Soon

The Centers for Medicare and Medicaid Services (CMS) Home and Community Based Access Proposed Rule 60-day public notice and comment period will end on July 3, 2023.

Comments must be submitted online by midnight on July 3, 2023. 

Once CMS finalizes the Proposed Rule, we will see amendments to the federal regulations for the Medicaid program. Those amendments will affect State Medicaid programs, North Carolina’s Standard Plan and Local Management Entity/Managed Care Organization (LME/MCO) managed care plans, Medicaid-enrolled provider agencies, and individuals who are enrolled in Medicaid and using HCBS services. 

State Budget Update

Although the new State Fiscal Year will begin on July 1, the North Carolina General Assembly Member State budget negotiations have stalled.  Members will not be convening conference committees again until after the July 4th holiday.  We will continue to monitor legislative activity, and we hope to have a more informative update for you about Direct Support Professional wage increases, new Innovations Waiver slots, and more in the July newsletter!  

Here is a Personal Care Services rate update:

  • Rates are currently at $23.84 and that includes both an Electronic Visit Verification (EVV) enhanced rate component and a COVID-19 enhanced rate component.
  • On July 1, the COVID-19 enhanced rate component will end, yielding a rate of $19.46 unless NC DHHS receives confirmation from the NCGA budget leadership that a rate increase (from $19.46 to $23) will be included in the budget with a corresponding (and necessary) appropriation.
  • Since we don’t have a State budget by July 1, the PCS rate will remain lower ($19.46) until a State budget is passed. Assuming that the final budget will include the increase to offset the end of the COVID-19 enhanced rates, the new $23 rate, whenever it is enacted, will be retroactive to July 1. 

Here is a helpful, two-column comparison from NC Health News of the House and Senate Health Services related provisions in the two versions of a State budget (in addition to the Governor’s budget) that we have seen to date in 2023:  A guide to the 2023 legislative health budget  

NC Brain Injury Association and Department of Mental Health/Developmental Disability/Substance Abuse Services (DMH/DD/SAS), TBI Waiver & LME/MCO Expenditure Updates 

June Updates from DMH/DD/SAS: 

  1. Competitive Integrated Employment (CIE) Request for Application (RFA) Update: June 16th was the extended application deadline.  However, the Department will still make a determination by 7/1.
  2. Area Health Education Centers (AHEC) Direct Support Professional (DSP) Certification Project: NC Department of Mental Health (DMH) is working with AHEC to evaluate DSP certifications in the field.  Will include all DHHS services (Innovations, CAP/C, CAP/DA for I/DD).  Some agencies have their own certifications; some have transferable certifications.  DMH will recommend next steps for NC.  DMH is looking for participants from the provider world and LME/MCOs and is also coordinating with the NC Developmental Disabilities Council. 

June Updates from Department of Health Benefits (DHB), a Division of the NC Department of Health and Human Services: 

DHB is working on 10/1/2023 Tailored Plan Amendments for the Traumatic Brain Injury (TBI) Waiver and Innovations Waiver which include: 

Summary of changes included in the 10/1 TBI Waiver draft amendment:

  • Added language that from 10/1 on Alliance will be a TP and the TBI Waiver will fall under the 1115 authority.
  • Flexibilities NC Medicaid anticipates requesting be made a permanent part of the TBI Waiver Service array:
    • Home Delivered Meals (up to 1 meal per day)
    • Waive requirement for beneficiary to attend the Day Supports provider once per week.
    • Direct care services may be provided in a hotel, shelter, church, or alternative facility-based setting or the home of a direct care worker because of COVID-19-related issues.
    • Real-time, two-way interactive audio and video telehealth for the following services:
      • Life Skills Training
      • Cognitive Rehabilitation
      • Day Supports
      • Supported Employment
      • Supported Living
      • Community Networking

Summary of changes included in the 10/1 Innovations Waiver draft amendment:

  • Flexibilities NC Medicaid are requesting to be made permanent as part of the Innovations Waiver Service array:
  • Home Delivered Meals (up to 1 meal per day)
  • Waive requirement for beneficiary to attend the Day Supports provider once per week.
  • Direct care services may be provided in a hotel, shelter, church, or alternative facility-based setting or the home of a direct care worker because of COVID-19-related issues.
  • Real-time, two-way interactive audio and video telehealth for the following services:
    • Community Living
    • Day Supports
    • Supported Employment
    • Supported Living
    • Community Networking
  • Relatives of Innovation Waiver Beneficiaries will be allowed to provide up to 40 hours total of Supported Living
  • Parents of minor children receiving Community Living and Support may provide these services to their child who has been indicated as having extraordinary support needs as evidenced by a Supports Intensity Scale (SIS) category of E (Very High General Support), F (Extraordinary Medical Support), and G (Extraordinary Behavioral Support Need).
  • Increase in annual Innovation waiver cap from $135,000 to $157,000.
    •  Resource Facilitation will be removed from the TBI Waiver.
      • Resource Facilitation role is duplicative of Tailored Care Management
    • Relatives of TBI Waiver Beneficiaries will be allowed to provide up to 40 hours total of
      • Life Skills Training and/or
      • Personal Care 

I/DD Legislative Priorities for North Carolina Organizations

Many organizations decide to focus on advocating by educating and informing on issues. Some of their resources can be referenced below.

NCCDD (North Carolina Council on Developmental Disabilities)

The Arc of NC

Disability Rights NC

Autism Society of NC

The Coalition

Did you know? Information you can use!

Graphic of yellow question marks with a blue background and the words did you know?

  • There are over 17,000 people currently on the Waiting List for the Medicaid Innovations Waiver in North Carolina.
  • We know there are many people who do not know about the Innovations Waiver or have not applied because the wait is too long.
  • People on waitlists for similar Medicaid Waivers in other states in the U.S. have an average wait time of three years. 
  • Some people have waited for an NC Innovations Waiver for over 20 years.
  • Our NC General Assembly is responsible for allocating new Innovation Waiver slots in the two-year state budget being negotiated now.
    — Their current draft budget being negotiated suggests 350 (House) and 250 (Senate) slots for the 2-year budget.
    The Governor’s budget suggests 1,000/year or 2,000 for two years.
    Other developmental disability groups have suggested 1,500-2,000 slots a year. (See the list of Legislative Priorities for North Carolina Organizations in the Policy Update article)

Highlighted Resources

The following are several resources about the Registry of Unmet Needs and the Innovations Waiver from our website’s Statewide Resources section.

DMH/DD/SAS Frequently Used Acronyms: Individuals and their family members hear and read many acronyms that are used by professionals in the disability community. This resource lists all the commonly used acronyms and what they mean.

What is the Registry of Unmet Needs? (Each LME- MCO has its own information. This is an example from the Partners Behavioral Health information.)

Am I Eligible for the Innovations Waiver? (Disability Rights North Carolina)

I/DD Waiver Administration and Need Across States (Duke Margolis Center for Health Policy)

The Waiting Room podcast hosted by Kenneth KeltyThe Waiting Room: Hosted by Kenneth Kelty, this is a podcast that shines a light on the ever-growing Medicaid waitlist and unmet needs of people with intellectual and/other developmental disabilities in North Carolina. Listen on Spotify or
View on YouTube.

Visit our Statewide Resources web page for more resources!

Stay in touch with us!