April 2023: CLIMBING THE SAME MOUNTAIN TOGETHER

Stand back! Our Meet The Need NC movement is about inclusion, choice, and joining together as a diverse I/DD (intellectual and developmental disability) community to make change.

It is shifting our state’s mindset to require a more robust array of service and support choices based on one’s situation.
A broadening of scope toward what is best for each person.
A movement toward more acceptance and inclusion for those with I/DD and their families in our communities.
Remembering that disability rights are civil rights.
An understanding that as a unified community, we have the best chance for change for those with I/DD now and for generations to come in North Carolina.

The voice of the advocate and self-advocate is central to our collective movement. Moving from individual interests to the I/DD community at large, educating and respecting one another about our unique circumstances along a continuum is also key. We want to have constructive versus divisive dialogues. Together, we are stronger today. We must let policymakers, friends, family members, teachers and so many others outside of our I/DD community know this by our words and actions.

We all may have different funding needs, policy perspectives, priorities, and related messages. However, our collective rallying can be around choice, inclusion, and more investment in the components in life that give us the opportunity to lead fuller lives. To do this, we must focus also on a person’s whole health beyond medical needs. We want to ensure that individuals with I/DD and their families have the support and services they need to lead lives on their terms, such as with more inclusive education, employment, housing, transportation choices and much more.

In an effort to enhance the knowledge base for our entire I/DD community, we are providing information from our April Lunch & Learn that included presentations about Medicaid and the 1915(i) option. We are hoping to see you and many others at our May Lunch & Learn when we discuss the Innovations Waiver and the Direct Support Professional (DSP) / caregiver workforce crisis.

This monthly newsletter will feature ideas, events and content from Meet The Need NC, as well as discuss ways you can join our efforts to fulfill the needs of North Carolinians with I/DD and their families.

Thank you for your engagement!

May 16: Accessing I/DD Services: Part 2

We are meeting 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. You can register for one or all of our lunch and learns on Hear. Share. Act: A Lunch & Learn Disability Advocacy Series.

Our next one is Accessing I/DD Services: Part 2 held on May 16, 2023 at noon. Speakers include:

Innovations Waiver/Registry of Unmet Needs: presented by Corye Dunn, Director of Public Policy, Disability Rights North Carolina
Direct Service Professionals (DSPs): presented by Talley Wells, Executive Director, NCCDD

April Lunch & Learn Wrap Up

Did you miss April’s Lunch & Learn webinar? Watch Accessing I/DD Services – Part 1 here! Resources from the presenters are listed below.

Speakers Presentations and Resources

John Nash, Executive Director of The Arc; and Michelle Merritt, I/DD Clinical Consultant, NC Medicaid, Behavioral Health Unit delivered informative presentations on the landscape of the I/DD services and supports. Download the slides here:

Other Resources

Did You Know?

Medicaid

Medicaid is not just for people with low incomes, it is also for those who have developmental disabilities.
An individual typically gets Medicaid with SSI (Supplemental Security Income) and with the Innovations Waiver.
A person who has a developmental disability may apply for Medicaid even if they are on the Waiver waitlist or, in most cases, after turning 18 years old because they are considered as a “party of one” for income purposes.
To apply for Medicaid for yourself or child, contact your county’s Department of Social Services (DSS) office https://www.ncdhhs.gov/localDSS or apply online at https://ncgov.servicenowservices.com/sp_beneficiary?id=bnf_apply.

1915(i) Option

An individual needs to have Medicaid to be eligible for 1915(i) services.
For the most part, 1915(i) option services will replace (b)(3) services. It is hoped that the 1915(i) option will be approved by CMS (Centers for Medicare & Medicaid Services) this summer, but we anticipate (b)(3) services will be extended to overlap before being sunsetted.
1915(i) services are considered entitlement services.
1915(i) services may be able to fill some of the gap of services for those waiting for an Innovations Waiver slot.1915(i) option services, which will require an assessment, include:
- Community Transition
- Respite
- Community Living and Support
- Supported Employment
- Other services to support those with a primary diagnosis of mental illness or substance use disorders

Lived Experiences: Meet The Need NC

This column features insights and opinions from Matt Potter, Co-chair of the Meet the Need NC Lived Experience Network Advisory Group.

As a man with a disability, Medicaid is more than a social program. Medicaid is more than just a source for healthcare coverage. For myself and so many others like me, Medicaid is a lifeline. It is a necessity, the only barrier between us and utter reliance on an institutional setting.

Medicaid is, in the current United States healthcare system, the only way for any person with a significant disability to stay integrated in the community as an adult (and often even before then). Many young parents who are raising disabled children might not realize this because they’re too busy just getting through each day, or even just because they don’t want to think about themselves not being in the world to watch over their children.

However, the reality is that Medicaid and waiver programs connected to it are the only way for disabled adults to stay connected to the world around them. With no Medicaid, there are no Home and Community Based Services. With no Medicaid, there is no Supported Living. With no Medicaid, there is no Supported Employment. To put it in more visceral terms, without Medicaid, once my parents are gone, I’d be unable to get myself out of bed in the morning, get dressed, or go to the bathroom without being in an institutional setting.

There are no people with disabilities who should be in such a setting when an alternative exists, of course, but to briefly compliment myself to drive the point home, I have a college degree, multiple part-time jobs, friendships, a loving partner, and a ubiquitous presence out in the community. Again, Medicaid is the only way that I’ll be able to maintain these things without the presence of my wonderful parents. Much as I would like them to be around forever, I know they won’t be, and so do they.

It’s easy, especially for people without any connection to the disability community, to imagine Medicaid as a program simply for the poor and downtrodden. Of course, I’d tend to argue that even if that was “all” Medicaid was, we should still support it and make sure it’s a robust, powerful program that will always be there for people who need it.

We as a society need to completely change the way that we look at what Medicaid is for people with disabilities. I’d even go so far as to say that it might be even better for certain things to be completely renamed, but I also realize that a lot of that has to do with legal complexities that aren’t so simple to change.

However, the next time you encounter someone who makes the quick leap from the word Medicaid to ugly stereotypes or talking points about the expendability of the program, think about this. If you or a loved one had a medication that you needed to maintain quality of life and the pharmaceutical company in question decided to randomly stop making the medication in question for the sake of profit margins or for any reason at all, how would you feel? If your quality of life was given some arbitrary price tag from someone distant from your life, would you tolerate it?

Truthfully, that is what is happening around discussions of Medicaid funding and disability services. Lives are line items. I don’t know about you all, but for my money, it’s more important for us to rebalance our moral budgets before our financial ones. It’s not a question of money, rules, or regulations. It’s a question of human rights.

Public Policy Update

Policy Updates as of April 25, 2023

Innovations Waiver Slots Legislation Update: Review the status of HB259, Section 9E.10 (House Budget Bill) and SB566 (Increase Innovations Waiver Slots): Summary of Innovations Waiver Slots Legislation Filed to Date
Innovations Waiver DSP Wage Increase Status: Review the status of HB440/SB488 (Direct Care Work Wage Increases/Innovation Waiver); HB259, Section 9E.15 (House Budget Bill); and SB550 (Direct Support Professional Wage Increases) in a Comparison Summary of Innovations Waiver DSP Wage Increase Legislation Filed to Date
Tailored Plans set to go live on October 1, 2023: To make sure that people can seamlessly receive care on day one, the launch of Tailored Plans is delayed until October 1 to ensure that the transition to Tailored Plans is as smooth as possible for the beneficiaries they will serve. The delayed start will allow Tailored Plans more time to contract with additional providers to support member choice.DHHS is still committed to rolling out 1915(i) option services upon CMS approval. The target effective date is July 1, 2023. All (b)(3) services will remain in place until 1915(i) approval. See the 1915(i) State Plan Option Update below for more information. Additional populations will be covered under the LME/MCO beginning April. 1, 2023: a) 0-3 and b) legal aliens. Nothing changes for members today, except for the new populations that will be served. Beneficiaries eligible for Tailored Plans should have received notices about the delay at the end of March. Members will continue receiving behavioral health services, I/DD and TBI supports through their LME/MCO and physical health and pharmacy services through NC Medicaid.
Tailored Care Management (TCM) Updates:
- - NC Medicaid and LME/MCOs are working closely with TCM providers to ensure a successful start of the service. Local Management Entities (LMEs) are currently contracting with TCM providers (CMAs and AMH+s).
  - NC Medicaid has published a list of certified TCM providers.
  - LMEs are currently contracting with TCM providers (CMAs and AMH+s).
  - You can find out if you are eligible for TCM by checking in NCTracks.
  - A map is available listing providers who have passed their readiness review and the locations for those providers. You can find the map, “ACM and AMH+ Provider Organizations by Zip Code,” on page 11 from a presentation done on March 16, Managed Care Hot Topics, presented by Back Porch Chat, NC Medicaid.
  - Want more information? Go to NCDHHS Tailored Care Management.
1915(i) State Plan Option Update: We understand that the Division of Health Benefits (DHB) is aiming a launch on July 1, 2023. (b)(3) services will not end at launch; they will continue for one year after the (i) launch so people have time to transition (because assessments are mandatory for (i) services). However, Community Navigator / Community Guide will end on June 30, 2023, due to some overlap with Tailored Care Management, but with one exception: Innovations individuals with self-directed care. If individuals need to move from institutional settings and Money Follows the Person (MFP) isn’t available, some Local Management Entity/Managed Care Organizations (LME/MCOs) may implement a DHHS-approved In-lieu of Service provision for individuals less than 21 years of age.The Division of Health Benefits is working on 1915(i) policies. The respite policy will be released soon. Community Living and Supports and Supported Employment policies will follow. If the policies are not finalized by the July 1, 2023 launch, then all will refer to the 1915(i) State Plan Option language for coverage until the new clinical coverage policies are finalized.
Unified Waiting List Update: The database vendor procurement process is in the silent period and the Division of Health Benefits (DHB) hopes to launch the waiting list by the end of the calendar year. LME/MCOs will still manage their own waiting lists, and the application process for getting on the waiting list at the LME/MCO level will remain the same. The data submitted to DHB and centralized at the State agency will ensure that the system is data-driven and informs DHB about service needs across the State. DHB will be able to see State-funded service utilization, services received, demographics, etc.
Competitive Integrated Employment (CIE): DHHS wants to ensure that individuals with I/DD have choice, and DHHS wants to offer more options. Please see the newest Joint Communication Bulletin #452.
TBI Waiver: The TBI Waiver is expanding into Orange and Mecklenburg Counties in 2023 (so the Waiver will still be limited to the Alliance Health LME region). The goal is still to expand statewide within five years, and DHB may undergo an additional Request for Application (RFA) process to add a second LME. But first, because so many slots will be used in Orange and Mecklenburg Counties (they already have a list of interested individuals), DHB will then need NC General Assembly funding for additional slots to be able to expand into a second LME/MCO region.
New Taxonomy launching for BCBAs: This will impact ABA services for ASD individuals to align with the Behavioral Analyst Board, but it will not go live until after the Board is up and running. BCBAs are not under the supervision of a psychologist at this time; they will have 60 days to enroll with the taxonomy within 60 days of the Board going live. A relevant DMH – DHB Joint Communication Bulletin will be published very soon.
CAP/C Waiver Renewal Update: [Reminder: per NC legislation, CAP/C is carved out of Medicaid managed care for at least the first few years.] The Centers for Medicare & Medicaid Services approved the Department of Health and Human Services’ request to renew the NC Medicaid 1915(c) Home and Community-Based Services (HCBS) Community Alternatives Program for Children (CAP/C) waiver for medically fragile and medically complex individuals between the ages of 0 through 20. The Home and Community-Based Services (HCBS) waiver was approved for a five-year period, from March 1, 2023, through February 29, 2028.The waiver will offer supports for waiver participants and includes three new approved home and community-based services: Attendant Nurse Care, a service that provides skilled nurse care to a waiver participant who has substantial, complex and continuous skill nursing care needs. This service is offered through consumer-directed services; Community Integration services, for an active waiver participant in jeopardy of losing their community placement due to tenancy-related issues; and Coordinated Caregiving, supportive services to a live-in caregiver that assist with the acquisition, retention or improvement of skills related to living in the community. A full list of CAP/C waiver supports is on the CAP/C webpage.

CMS approved the Department’s request to increase the number of CAP/C waiver individuals by 500 each year of the waiver renewal period (i.e., year 1: 4000; year 2 – 4500; year 3 – 5000; year 4 – 5500; and year 5 – 6000).
A transition plan will be shared to help families moving from the Appendix K waiver flexibilities enacted during the COVID-19 public health emergency to the new services in the CAP/C waiver beginning May 2023, and will be completed November 11, 2023. The transition plan will be based on the waiver beneficiary’s annual recertification date. Waiver participants who received their annual recertification before May 11, 2023, will be assigned a specific month to begin their transition to the new CAP/C policies and procedures.
Additional information is available on the CAP/C webpage.

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)

2023 Public Policy Priorities
Policy education meetings every second Thursday of the month from 10:30am-12:00pm via Zoom

The Arc of NC

Legislative Agenda 2022-23
Weekly Wrap-Ups with Executive Director, John Nash

Disability Rights NC

A Summary of DRNC’s 2023 Advocacy Targets

Autism Society of NC

2023-2024 Policy Targets

The Coalition

2023 Coalition Legislative Budget Priorities

Help Us Reach 170 surveys!

Our state legislature controls policies that impact our I/DD community. It is really important to know what legislators understand about the issues we are facing. We are asking everyone to identify their legislators in the area where you live and ask them to fill out the I/DD survey.

Click on this link to find your the email addresses of your representatives and senator. and connect with them to ask them to fill out our live survey.
Create a short email:
First, tell them about yourself, loved one, or person you know who has a developmental disability.
Next, give them this special link to the survey that will help to gauge their understanding and identify solutions: https://duke.qualtrics.com/jfe/form/SV_6hrPgffjmnUCTsy. (This is a special live link to be used ONLY by legislators.)
And be sure to thank them for taking the time to fill out the survey.

Thank you for your help! We look forward to sharing the survey report with you when the survey and its analysis are complete. We need just 15 more completed before we can close the survey. We know legislators are busy, but they need to hear from you NOW.

P.S. We’ve been asked by many of you what is included in the survey. This is copy of a PDF of the survey (it is not the live link you are giving to your legislators) for you or others to see what we are asking legislators: PDF of Survey

Resources for Our Community

Knowledge is power! This list of extensive resources is aimed to help keep our families and individuals with I/DD “in the know.” Check them out below and view more on our website.