Advocacy at
The Arc of North Carolina

The Arc of North Carolina is an advocacy and service organization working with individuals with intellectual and developmental disabilities (IDD) and their families since 1953. The Arc is committed to securing for all people with IDD the opportunity to choose and realize their goals of where and how they live, learn, work, and play.

The state budget must provide a stable system of care, support, and opportunity for people with IDD across the lifespan. The budget must reflect a cohesive system of comprehensive services that provide options to individuals and families, streamlines regulatory requirements for providers, and maximizes funds by leveraging state and federal matching dollars through waivers and other tools.

TAILORED CARE MANAGEMENT

The General Assembly should work to ensure that funds are invested in Tailored Care Management and the service is sustainable for people with IDD. Tailored Care Management is the backbone of the system, the lynchpin for integrated care, needed now more than ever, and it must be strengthened, and sustained – not weakened. Our goal in providing this service will be to help people with IDD improve their health and overall quality of life as much as possible.

Tailored Care Management connects people with IDD and their families with essential physical and medical healthcare, mental health supports, and community resources. After Hurricane Helene, the opportunities with Tailored Care Management became even more prominent, as our staff worked to quickly connect people with IDD and their families to needed resources and services in their communities. Within the first two weeks, we reached out to and located 101 staff and over 500 people we serve. Our staff made care management their top priority whether the service was billable or not. Tailored Care Management is critical in emergency situations and disaster response, and having a large network of competent providers is imperative.

This life saving program is in jeopardy, and adjustments are necessary for care management providers to continue to make a difference in people’s lives and help ensure improved health outcomes.

• The continued short-term extension of the current rate is not sustainable. Currently, the rate has been extended every three months and now through June 2025. The Arc of North Carolina is concerned about what will happen if this rate is decreased or inadequate. Providers must be able to sustain staff, and sustain the service and continue to expand it, while sustaining their business. Rates should not be a moving target, but a consistent amount paid based on the value and the intensity of the service. Today it remains underfunded and unstable, and the state faces the potential loss of providers.
• North Carolina needs to adjust and stabilize the service definition and expectations of Tailored Care Management. Increased responsibilities and processes continue to be added to Tailored Care Management, without stable or increased rates, further complicating the work and inhibiting its sustainability. Expectations must be reasonable and processes must be standardized across all four LME/MCO/Tailored Plans.
• The data feeds and files received by providers from LME/MCO/Tailored Plans must be standardized and stabilized. Constant disruptions and discrepancies cause additional unfunded work, complications and barriers in providing ongoing services to people in need.

North Carolina needs to secure community-based providers who are competent and capable of delivering Tailored Care Management at the local level to people in communities across the state. Current providers need to stabilize and LME/MCO/Tailored Plans must continue to partner with those organizations. The community-based providers are critical in this evolving system and its success.

HURRICANE RELIEF FOR WESTERN NC

The General Assembly should provide continued supports to people with IDD and their families as they continue to recover from the destructive events of Hurricane Helene. Many people with IDD were impacted and are some of the most vulnerable people with the most intense needs and the least resources to get through this disaster. The recovery process requires sustained funding to help residents, community organizations, and businesses back to pre-hurricane status.

As NC’s housing crisis worsens with Helene’s damage, funding creative options will remain critical and immediate as we face a long-term recovery. The Arc of North Carolina has ongoing issues with the funding structure for permanent supported housing options and needs funding to renovate and repair some properties that could be used quickly in emergencies.

WORKFORCE OPPS and APPRENTICESHIP

We are grateful for the General Assembly’s support to increase the wages of Direct Support Professionals (DSPs) the past two years, and yet many remain in the lowest paid positions. We must continue to increase their wages, along with the wages of their supervisors, and their fringe benefits, including paid leave. Increased service rates for services provided allow providers to pay for these needed increases for DSPs. Rates must continue to climb, with the provision that those dollars fund those needed increases for DSPs and supervisors. In addition, the General Assembly should continue to invest in and expand apprenticeship opportunities and funding through ApprenticeshipNC and other sources. Apprenticeships can help attract needed candidates to DSP jobs and can provide the high-quality training and mentoring needed to professionalize these critical positions.

The General Assembly should provide continued support for workforce development and supported employment for people with IDD. People with disabilities remain the most unemployed and underemployed working-age population nationwide. North Carolina must work with a broad array of stakeholders to create innovative, long-term solutions to successfully transition people with IDD into our state’s workforce with meaningful employment opportunities.

NC INNOVATIONS WAIVER

The General Assembly should fund additional Innovations Waiver slots and reduce the number of people on the Innovations Waiver waitlist. The waiver allows people with IDD access to supports and services in their home rather than being forced into an institution. We thank the General Assembly for its consistent progress for fully funding the Innovations Waiver waitlist. As of September 2024, there are 18,469 people on the waitlist. Between 2021 and 2024, there were 1,350 waiver slots funded. Sufficiently funding Innovations Waiver slots is an ongoing and growing need.

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