Too long to wait!

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)   Update: 2/17/2022 the Forsyth County Commissioner voted to approve a $150,000 planning grant to begin the inclusive housing project.  The Piedmont Triad Regional Development Council is excited to begin a formal proposal for Forsyth County to reapply for additional American Rescue Plan Act Forsyth County funding. 

Once all documentation has been received & reviewed, the IDD Registry Coordinator will contact you for additional screening or to information. After all needed information is received and you have been placed on the Registry of Unmet Needs you can expect the following:  A screening (the Risk Support Needs Assessment) over the phone with the Registry Coordinator. This should take less than an hour. A Supports Intensity Scale. The evaluation team will contact you to set this up. It will take a couple of hours and usually takes place in your home. During this assessment, you should have at least two individuals present that know the member (can be family members or the member).  All evaluations and screenings should be completed within 90 days of the initial request for services.  The process needs to be completed within the 90 days. Once the assessments are completed and reviewed, you will receive a letter from the Registry team telling you of your status on the registry. This letter will include an effective date if placement has been approved.  If it is determined that you do not meet the eligibility criteria to be placed on the Registry of Unmet Needs, you will receive a letter stating the reason for the denial with instructions for the Appeals Process. You are encouraged to call the Registry Coordinator to discuss the decision and determine if additional documentation may assist in the process.  

RALEIGH – The North Carolina Department of Health and Human Services published its Olmstead Plan, designed to assist people with disabilities who receive or are eligible for publicly-funded services to reside in and experience the full benefit of being part of day-to-day life in communities alongside those without disabilities. Developed with stakeholders from across the state, the plan’s goal is to divert people from entering institutions and to support those wishing to leave. The Olmstead Plan serves as a blueprint for how NCDHHS, the Office of the Governor and other governmental agencies and their partners, with support from the North Carolina General Assembly, make decisions about services to fund and support the health and well-being of North Carolinians with disabilities. The plan outlines an approach to the array of services and supports vital to community living. Access to housing, employment, home and community-based services and other supports are addressed in the plan. “The Olmstead Plan captures our Department’s total commitment to build towards the vision in which every North Carolinian can live, work, and thrive in their communities,” said NCDHHS Secretary Kody H. Kinsley. “The plan supports building capacity in our community-based health care services and supports and furthering the infrastructure that enables health such as transportation, employment, and housing. I look forward to working with all of our stakeholders to implement this plan.” Read more

The U.S. Senate has yet to take up President Joe Biden’s roughly $2 trillion Build Back Better Act. The legislation, which was passed by the House of Representatives in November, includes $150 billion for Medicaid home and community-based services that people with disabilities rely on to live on their own or in group homes rather than in institutional settings. The historic investment is aimed at getting people off waiting lists and shoring up the workforce of direct support professionals who provide such services. Democratic leaders had hoped to push the bill through before Christmas, but the measure was stalled again in late December when Sen. Joe Manchin, D-W.Va., said that he could not back the legislation. Because the Senate is divided 50-50 along party lines and Republicans have unanimously opposed Biden’s plan, the bill needs the support of every Democrat to pass. Read more

DHHS delays Medicaid tailored plans rollout until December 2022 The launch of a key Medicaid transformation initiative in North Carolina — tailored plans for behavioral health recipients — has been delayed by additional five months until Dec. 1, 2022. Individuals who need certain services to address a serious mental illness, serious emotional disturbance, severe substance use disorder, intellectual or developmental disability, or traumatic brain injury, may be eligible to enroll in a tailored plan. The state Department of Health and Human Services said in July that tailored plans could serve about 200,000 North Carolinians, or about 8.7% of the 2.3 million Medicaid recipients in the state.   Continue reading

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.

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 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

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.

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