Disability Funding Build Back Better Plan

House of Representatives Passes Historic Disability Funding Through the Build Back Better Plan by Pam Katz “We need the Senate to understand all that is on the line” Today, the U.S. House of Representatives passed President Biden’s Build Back Better plan, bringing us one important step closer to making significant investments in our country, in the lives of people with disabilities and their families, and the direct support workforce. The reality is change can’t come soon enough for millions of people. The proposal includes $150 billion for Medicaid home and community-based services, or HCBS, which provide the support people with disabilities need to be a part of their community, and better pay for the workers who support them. Read more here.

Disability and Housing Forum in Forsyth County

The historic Disability Housing Forum in Forsyth County this past Oct. 28th, 2021. Powerful presentation hearing from the voices of people with lived experience in disability, their family members, and professionals who shared resources and pathways to successful community-based living and supports. We gained a deeper understanding of the impact that the lack of available housing has on our community members who desire more independence and inclusion and possibilities for the future. We hope you have a chance to watch the recording and also review the PowerPoint slides. https://youtu.be/mno9Xet-hsk (VIDEO LINK TO RECORDING)

NCCDD Self-Advocate Series

NCCDD is hosting a monthly self-advocate discussion series facilitated by Chris Hendricks, NCCDD Policy Education Coordinator/Legislative Liaison and NCCDD self-advocate executive committee member, Cheryl Powell. The goal of the series is to prepare, organize and mobilize NC self-advocates for influencing social and systems change. The Council aims to emphasize the value of people with disabilities to build and maintain relationships with NC legislators and decision-makers while bridging relationships and a network among NC self-advocates. The webinars will be held monthly on October 6, November 3, December 1, 2021, and January 5, 2022 from 1 - 2 PM via Zoom. Learn more here and register via Zoom.  Continue reading

N.C. Senate bill makes another attempt at reducing waiting list for behavioral health services

reposted from  https://journalnow.com N.C. Senate Bill 350 would add 1,000 innovation waiver slots from a waiting list of more than 15,000 A bipartisan N.C. Senate bill would provide $37.5 million in state funding toward a modest attempt at reducing the long list of North Carolinians with intellectual and developmental disabilities awaiting additional personal-care services. Senate Bill 350 was filed Thursday with Sen. Joyce Krawiec, R-Forsyth, as primary sponsor. The state’s Medicaid innovations waiver initiative allows people with intellectual disabilities to receive services, known as b(3), and assistance in their homes and communities instead of in an institution. The services involve in-home skill building, intensive recovery support and transitional living. A slot is created for each individual receiving the additional services. There are more than 15,000 individuals on the waiting list known as North Carolina’s Registry of Unmet Needs, including at least 809 in Forsyth County. Some North Carolinians have waited as many as 19 years. One example is Matt Potter, who has been waiting for 10 years for a waiver slot. He has cerebral palsy and relies on his mother, Sarah, to help care for him. Potter, 34, has a bachelor’s degree from Wake Forest and makes a living doing independent contract work. “I have no recourse if I don’t have a family member that is able to take care of me,” Potter said in March 2020 during a local advocacy rally. “I would end up in an institution.” There are 266 Forsyth residents currently receiving the services, according to behavioral health managed care organization Cardinal Innovations. However, Forsyth has not gained a slot since at least 2017. If approved as a standalone bill, or if inserted as likely into the Republican state 2021-22 budget proposal, the language would provide the funding needed for at least 1,000 individuals. That would reduce the waiting list by 6.7% by Jan. 1 if the bill is signed into law. The $37.5 million would be the state match for the 2021-22 and 2022-23 state fiscal years to secure $82.2 million in funding from the federal Centers for Disease Control and Prevention. At 1,000 slots, SB350 would represent a 2½ times 40% increase over the 400 new slots included in the 2017-18 state budget. The 2019-20 Republican-sponsored state budget bill would have increased the waiver slots by up to 1,000 over two years at a cost of between $32 million and $41 million. That bill was vetoed by Democratic Gov. Roy Cooper because it did not include funding for a form of state Medicaid expansion or pay raises for public school teachers at the level he had recommended. “Expanding innovation waiver slots has been a priority for me,” Krawiec said. “I believe it is crucial to provide services to this vulnerable population. “I do believe that the timing is right. I will not give up until services to this group of citizens have been provided.” Funding path The funding for adding at least 1,000 slots would be sent to the state’s seven behavioral health MCOs. Cardinal currently has 20 counties, including Alamance, Davidson, Davie, Forsyth, Rockingham and Stokes in the Triad. Forsyth is among five Cardinal counties asking permission from state Health Secretary Dr. Mandy Cohen to divest from Cardinal because of concerns about Cardinal’s oversight. Once funding is distributed to the MCOs, SB350 would require the additional slots “be made available to the counties on a per-capita basis calculated as the number of slots multiplied by the population of the county divided by the population in its catchment area.” “Within each county, the slots shall be filled on a first-come, first-served basis determined by the length of time an individual has been on the waiting list.” SB350 also would require the N.C. Department of Health and Human Services to work with stakeholders on a 10-year plan to assess and development new strategies for further reduction of the waiting list. The 10-year plan proposal also was included in the 2019-20 state budget bill. Legislative awareness The funding shortfall began in earnest during the Easley and Perdue administrations when the Democratic-controlled legislature reduced overall state spending in order to balance the state budget during the Great Recession. However, individuals on the registry list for at least 10 years have been on it throughout Republican control of the legislature that began in 2011. During the 2019-20 state budget debate, Senate GOP leaders focused on reducing the waiting list in an attempt to counter building momentum for expanding Medicaid. “While Democrats have focused their efforts on expanding socialized medicine via Obamacare Medicaid expansion, Republicans believe that care for people with severe disabilities should be prioritized over taxpayer funding for able-bodied adults,” according to a July 2019 statement from the office of N.C. Senate leader Phil Berger, R-Rockingham. Krawiec in 2019 also cited her preference for prioritizing those on the wait list before funding Medicaid expansion for able-bodied adults. “It is a good start to respond to the backlog,” Rep. Donny Lambeth, R-Forsyth, said Friday. “The Senate leads the budget process this time, and we will see how committed the Senate is to funding this in its budget plans. “It will take a few years, and a commitment to add new funds, to really have an impact on reducing the backlog, but give credit to the Senate for taking this initial step.” Rep. Verla Insko, D-Orange, said Friday that SB350 “would send a strong signal to parents that we are serious about making improvements every cycle, if not every year.” “In the long run, it would save the state from paying for some of the institutional care.” Advocates’ thoughts In March 2020, a coalition of behavioral-health advocates held what was known as the “2Long2Wait” rally to draw attention to the registry and waiting list. Bill Donohue, one of the rally organizers, wrote in an opinion piece published in the Winston-Salem Journal that the registry represents “people of all ages and socio-economic groups who have intellectual and/or developmental disabilities.” Donohue and Deborah Woolard are the parents of Jeremy Donohue, 36, who has a rare disease combination of FSH (facioscapulohumeral) muscular dystrophy and Down syndrome. “Though qualified for assistance, they are put in a holding pattern for the Medicaid Innovations Waiver,” Donohue wrote in the opinion piece. On Friday, Donohue called SB350 “a small start — the governor and General Assembly have thrown these small numbers out before as negotiating pieces.” “They need a plan to address the big elephant before it becomes the big zoo,” he said. Donohue said the 10-year plan “has been in order for a long time.” “The legislature has a long history of plans that gather dust and or/go unfunded,” he said. “But, it’s an essential start to have something that goes beyond two-year funding cycles.” Donohue said he is encouraged that bill sponsors recognize “the notion of addressing those in N.C. who have waited the longest, irrespective of county capitation, is important.” “This bill seems to begin thinking some about that, but the ifs and what’s and maybe’s within the Medicaid bureaucracy is a lot to digest,” he said. “Creating a living minimum wage would be a huge start that would contribute to careers for caregivers.” The long-term solution “requires taxation, which requires courage,” Donohue said. Local behavioral-health advocate Laurie Coker said chipping away at the waiting list is only a temporary solution since individuals continue to be added to the N.C. registry, either as they are recognized in need of services or they and family members moved into the state. “If DHHS can move quickly, and the study does not take too long, parent caregivers, some in their 70’s or older, can hope for a light at the end of a very long and ever scarier tunnel,” Coker said.

September 14 Waiver Presentation Recording

Thank you for attending the Registry of Unmet Needs Research Project Presentation hosted by the North Carolina Council on Developmental Disabilities with Christina Dupuch and Sarah Pfau from Cansler Collaborative Resources and Dr. Michelle Franklin from the Duke-Margolis Center for Health Policy.  You can find a copy of the PowerPoint presentation, the recording of the presentation, other related information on the website. We greatly appreciated the robust dialogue and questions that were part of the chat during the presentation.  We have shared the chat conversation with the presenters, our policy team, and the leadership of our new four year initiative on the Registry of Unmet Needs.  Continue reading

Partners - Cabarrus, Stanly, and Union Counties

Those in Cabarrus, Stanly, and Union counties transitioned to Partners as their MCO as of September 1, 2021. Continue reading

Cardinal Innovations to Partners

November 1st is the date IDD services for people in Forsyth and Davie Counties will move from Cardinal Innovations to Partners. We will share additional information as it becomes available. 

Huge Boost for Waiver Action!

On August 18, the North Carolina Council for Developmental Disabilities awarded a four year, $600,000 grant to energize the long fight to reduce the wait for the Innovation Waiver.  LAND (Leadership Alliance for Neurodiverse Disabilities) was awarded first-year funding to research, educate, and engage policy makers, self-advocates and all who embrace our fight.   Our NC Waiver Action Team is central to the grassroots effort and will partner with other stakeholders in statewide programs identified in the grant.  An Advisory Council bringing all of North Carolina’s disability advocates together offers the first of its kind thrust to reduce the tragic wait of nearly 16,000 people with I/DD. Continue reading


Congress is in the process of deciding how much money to allocate for Medicaid Home and Community Based Services (HCBS) in the recently proposed $3.5 Trillion spending package, and it needs to hear from the disability community NOW! Medicaid HCBS has been grossly underfunded for decades, and the problems with the HCBS system have been exacerbated by the COVID-19 pandemic. We finally have a chance to make a significant investment in HCBS but we need to fight for it! Both President Biden’s American Jobs Plan and the Better Care Better Jobs Act (BCBJA) (S. 2210/H.R. 4131) proposed an unprecedented yet critically necessary $400 Billion investment in the infrastructure of Medicaid HCBS to provide much-needed funding for states to assist people with disabilities and their caregivers to access services, get off long waiting lists, receive better quality care, and to address the longstanding direct care workforce crisis. Despite the dire need for this funding and grassroots advocacy, this money is not part of the current bipartisan infrastructure bill that will be voted on shortly. Last week, the Senate Democratic leadership announced that they reached an agreement on a $3.5 Trillion budget resolution that they will move through the budget reconciliation process. Although some Senators are supporting the inclusion of HCBS funding in the budget reconciliation package, they are proposing to scale back the amount of investment in Medicaid HCBS from $400 Billion to $150 Billion. The full $400 Billion is necessary to fund expanded access to Medicaid HCBS for people with disabilities on waiting lists and to address the direct care workforce crisis. This funding is long overdue! Please call or email your Senators and Representatives and urge them to include and prioritize the full $400 Billion investment in HCBS proposed by the Better Care Better Jobs Act in the current budget reconciliation package. Please share your story on how HCBS impacts you and your family. Call your Members of Congress: Call the Capitol Switchboard at: (202) 224-3121 (voice) or (202) 224-3091(tty) and ask to be connected to your Senators. You can use this easy tool to find your members of Congress. Thank you for your advocacy efforts! The NDSC Policy & Advocacy Team