“Change never happens at the pace we think it should. It happens over years of people joining together, strategizing, sharing, and pulling all the levers they possibly can. Gradually, excruciatingly slowly, things start to happen, and then suddenly, seemingly out of the blue, something will tip.”

Judy Heumann, Being Heumann: An Unrepentant Memoir of a Disability Rights Activist

March is Developmental Disabilities Awareness Month. Meet the Need NC is a grassroots movement bringing North Carolinians together to drive change for those with intellectual and other developmental disabilities (I/DD) and their families.

We want to bring all advocates and allies together to ensure that the service and support needs of the I/DD community are met by standing on the shoulders of those like Judith Heumann (12/18/1947 – 3/4/2023) who have advocated before us.

Below are the Meet the Need NC Guiding Principles that will help activate change as we all climb the same mountain together:

We have a greater chance to be heard and make a change when we do this together. We all have different voices, but we have a better chance for policy change if we have a chorus of voices focused on similar goals rather than many different ones.

We are focused on expanding the service pie, not splitting it. We are for all people with I/DD. We will not allow differences of need or opinion to separate our I/DD Community.

I/DD issues are individualized. Whether health or individual or family needs, we must respect and understand that one size does not fit all.
People with authentic lived experiences should be at every table where decisions are made about them.

This is an essential moment in time for change.

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. Catch up on last month’s newsletter here.

April 18: Accessing I/DD Services: Part 1

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, we intend 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 on April 18, 2023 at noon and is titled Accessing I/DD Services, Part 1.

Public Policy Update

Policy Updates as of March 23, 2023

  • Medicaid Expansion: On February 8, 2023, the NC General Assembly’s House of Representatives filed a Medicaid Expansion bill (HB76 – Access to Healthcare Options). On March 2, 2023, House and Senate leaders held a press conference to announce that they had reached an agreement to enact Medicaid Expansion legislation. On March 15th, the Senate passed its Proposed Committee Substitute version of the bill and forwarded it for a concurrence vote in the House. On March 23, the House passed NC Medicaid Expansion on a final concurrence vote. The bill will now go to Governor Cooper for signature. However, Medicaid Expansion will not begin until the later date of the General Assembly enacting a State budget or CMS approval of NC DHHS’s State Plan Amendment for NC Medicaid Expansion. You can read the final version of HB76 here.

  • Tailored Plan Delay: The State Medicaid agency recently announced a delay in the Tailored Plan start date from April 1 to October 1 of 2023. However, Tailored Care Management, which LME/MCOs started on December 1, 2022 will continue. See the NC DHHS press release here.

  • 1915(i) State Plan Option: DHHS does not yet have approval from the federal Centers for Medicare and Medicaid Services (CMS) to begin the 1915(i) Option that will replace (b)(3) services. In early March, DHHS reported that a likely start date for these services will be July 1, 2023. We will continue to follow and update you on the State’s progress.

  • Governor’s Budget: Governor Cooper’s “Recommended Budget” for State Fiscal Years 2024 and 2025 was released and presented to the NC General Assembly on 3/16/2023. We expect to see the first NC General Assembly House budget bill come out in early April. Policy forecasts to date indicate that House and Senate leaders do not necessarily agree with the Governor’s recommendations, and that their budget bills will look different. You can access the full Recommended Budget document here. The NC Department of Health and Human Services provisions begin on page 151.

    The Governor is recommending 2,000 additional waiver slots over the next two years (1,000 each year) and for Direct Support Rates for the Innovations Waiver to increase to $18.00 over the next two years.

  • House Bill 440: HB440 was filed on March 22. This bill is to increase DSP (Direct Service Provider) rates for the Innovations Waiver. You can follow the bill’s progress by inputting the bill number (HB440) here:

    As of March 23, 2023, HB440 has passed its First Reading in the House and has been assigned to the House Committee on Appropriations for discussion and a vote to “report favorable” or “report unfavorable.” That Committee could also potentially replace the bill content with a “Proposed Committee Substitute” and then discuss and vote on the bill. If the bill is reported favorable in the Committee on Appropriations, it will next go to the House Rules and Operations Committee. In the Rules and Operations Committee, the bill may sit and wait to be calendared for a House floor Second Reading and Third Reading and vote to “Pass” and send the bill to the other chamber / to the Senate for the same process. Another option regarding the fate of this bill is that it could be rolled into the Appropriations Act (the State budget). This could be likely since HB440 calls for an appropriation of $90M for each of the two biennium budget years.

  • About DSPs (Direct Support Professionals)

    The ability for those with I/DD to live more independently in their communities is currently impacted by the DSP workforce crisis. DSPs help support those with I/DD in their daily lives. DSPs help people become integrated and engaged in their communities. They aim to assist people in realizing their full potential.

    Learn more about DSPs here.

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.


Help us get to 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

Tell them about yourself, loved one, or person you know who has a developmental disability.

Give them this special link to the survey that will help to gauge their understanding and identify solutions: (This is a special live link to be used ONLY by legislators)

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 20 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