The NCSI Coalition Communications, Education, and Advocacy work group has identified legislative priorities based on the NCIOM Recommendations published in the final Task Force Report. The issues identified below are the Coalitions priorities, however, they do not represent the entirety of the issues which the Coalition supports and on which it takes a position.
Updated: May 20, 2021
Current Legislative Priorities
Modernization of ACP Documentation and Registry
RECOMMENDATION 4.7-1: Ease administrative burden, increase participation in completing documents, and improve accuracy of advance directives. In order to ease administrative burden, increase participation in completing documents, and improve accuracy of advance directives, the North Carolina General Assembly should:
- Revise NCGS § 130A-470 to eliminate consumer fees for filing a document in the Secretary of State’s Advance Health Care Directive Registry
RECOMMENDATION 4.7-2: Allocate recurring funding for the ongoing processing of filings and enhanced maintenance of the state’s Advance Health Care Directive Registry and to allow new services, including: a. Online filing of advance directives with the registry. b. Reconfiguring the filing and storage of advance directives to provide electronic access by NC HealthConnex to records for which the filers have given consent to access, while continuing to provide personal access to filers who opt out. c. Covering the one-time cost of soliciting existing filers to inquire if they would like to make their records electronically accessible to NC HealthConnex and, if so, to obtain any missing data points needed by NC HealthConnex to accurately link advance directives with patients.
RECOMMENDATION 4.10-2: Improve access to advance care planning documents through optimization of health information technology in order to improve access to advance care planning and portable medical order documentation, and improve interoperability between health care providers, technology product vendors, and data repositories.
The North Carolina General Assembly should allocate funding to the North Carolina Department of Health and Human Services (including Office of Emergency Medical Services), Department of Information Technology, and the Secretary of State’s Office to perform a statewide survey of existing databases (registries, portals, or electronic health records) where advance care planning documents are stored; and collaborate on a study of necessary components and resources needed to: a. Perform technical analysis of the Secretary of State’s ADP Registry, including technical architecture of the existing database, technical limitations, and necessary development/ enhancements to link ADP Registry data to NC HealthConnex via APIs or other standard b. Meet existing technical standards (including federal standards) and determine feasibility and level of effort to transmit advance care planning documents from an electronic health record, consumer portal, and/or registry database, to NC HealthConnex using APIs; to include review of broadband accessibility and access disparities across state. c. Review and provide recommendations on best practices for transmitting advance directives/portable medical orders electronically via NC HealthConnex, in order to be used by appropriate providers of health services
Pros: Ability to engage in a timely sharing of documents will encourage completion of documents
Cons: Timing and Funding
MOST – Move to Electronic Form and Create Registry for Sharing
RECOMMENDATION 4.8-1: Ease administrative burden and increase uptake and accessibility of portable medical orders In order to ease administrative burden and increase uptake and accuracy of portable medical orders (including Medical Orders for Scope of Treatment): 1. The North Carolina General Assembly should revise NCGS § 90-21.17 to: a. Include acceptance of electronic versions of portable medical orders (including Medical Orders for Scope of Treatment form and Do Not Resuscitate) in all health care settings b. Permit electronic signatures on portable medical orders as valid c. Require acceptance of portable medical orders (if POLST Paradigm-endorsed) completed in other states and facilities (that meet North Carolina criteria as defined in NCGS § 90-21.17) d. Establish reciprocity for portable medical orders established through US Department of Veterans Affairs health system
Pros: Opportunity to integrate in ACP workshops by the Coalition
Cons: Need for more education on this issue
Establish Task Force on Caregiving for Those with Serious Illness (2022)
RECOMMENDATION 4.12: Establish Task Force on Caregiving for Those with Serious Illness and analyze additional legislative solutions and financing options to meet the needs of caregivers
In order to address issues, including financial burden and physical and mental well-being of family caregivers, the North Carolina General Assembly should: 1. Establish a Task Force on Caregiving for Those with Serious Illness within the Department of Health and Human Services. Task force scope should include caregivers for those with serious illness across the lifespan (including younger adults and children).
Among other work, the Task Force on Caregiving for those with Serious Illness would:
a. Examine the availability of supports and services within the state and counties for caregivers of individuals with serious illness
b. Study the needs of care recipients and the nature of care provided by family caregivers, availability and sufficiency of caregiver training programs or caregiver training opportunities, and the frequency with which caregivers engage in those programs or opportunities
c. Identify costs and burdens associated with caregiving, incorporating input from diverse stakeholders and interest groups that reflect diverse patient and caregiver populations
d. Study disparities in availability of and access to caregiver services (geography, income, awareness, socio-cultural caregiving practices)
e. Study ways the state, including employers, can be more supportive of employed caregivers
f. Study serious illness care and special needs workforce, including pre-service and in-service training, opportunities to develop the workforce pipeline, and methods of supporting wages and addressing provider burnout and compassion fatigue
g. Operate with a shared authority across agency divisions and with focus across lifespan in order to ensure broad responsibility and support across stakeholders
h. Include study of the feasibility, benefits, and challenges of establishing a state-based benefit for long-term supports and services, and recommendations
i. Report study results and additional recommendations to the North Carolina General Assembly, the governor, and other stakeholders
Closing Health Insurance Coverage Gap
The task force and NCSI Coalition recognized the importance of closing the health insurance coverage gap and looking at federal subsidies, Medicaid expansion, and the need for people with serious illness to have adequate coverage.
RECOMMENDATION 3.6-1a: Expand access to coverage for health care services
In order to ensure access to health care services for individuals with serious illness:
1. The North Carolina General Assembly should support legislation to:
a. Close the health insurance coverage gap
Pros: A plethora of unmet needs, more people have lost insurance in the last year due to job insecurity (approx. 600,000 uninsured people in NC currently), and there has been an increased need for care due to COVID conditions
Funding For Services
RECOMMENDATION 4.11: Expand home- and community-based services to better support individuals with serious illness and their caregivers
In order to address issues including financial burden and physical and mental well-being of family caregivers and better serve individuals with serious illness across the lifespan, the North Carolina General Assembly should allocate recurring funding to expand home and community-based services and family caregiver support services. The North Carolina General Assembly should also include resources for ongoing collaboration between North Carolina Department of Health and Human Service Division of Aging and Adult Services, Division of Health Benefits, patient and caregiver advocacy organizations, Area Agencies on Aging, and local service providers to enhance and supplement existing home- and community-based services, including identifying innovative payment strategies for these services. Funding should be adequate to:
- Increase number of Community Alternatives Program for Disabled Adults and Community Alternatives Program for Children slots in order to allow family caregivers to access appropriate services
- Include recurring funding for the Home and Community Care Block Grant in the amount of $3.5 million in the first year of the biennium and $7 million in the second year of the biennium to address the waiting list for services funded by the Block Grant
- Expand the availability of PACE (Program for All-Inclusive Care for the Elderly) services across the state, as identified by the NC PACE Association as areas of greatest need and/or ability to meet the need. This should also include a review of eligibility determination processes, with the goal of reducing administrative burden and increasing efficiency
- Provide state funding to expand the Family Caregiver Support Program to include direct services
- Increase the number of available slots in the NC County Special Assistance In-Home Program
- Explore the development of a respite benefit for Medicaid recipients, using Medicare hospice respite (supportive services) benefit as a model
- Promote assessment procedures to identify training needed by family and volunteer caregivers (including basic medical skills, assistance with activities of daily living, etc.)
- Develop and implement sustainable funding models for addressing food, housing, transportation, and caregiver support (including adult day care and adult day health) needs, using Medicaid procedures and additional provision through Healthy Opportunities pilots as a model. Include resources for dissemination and awareness activities, including provisions for local community work on increasing awareness and navigation of services, including resources for promoting NCCARE360
- Evaluate impacts of expanded services on caregivers’ intent to place out of home, real delays in placement, and improved patient-centered outcomes (i.e., adherence to patients’ goals of care, access to care, caregiver well-being). Evaluation should also include an analysis of cost savings for NC Medicaid, other payers, and to individuals and families, as a result of expanded caregiver support services
- Ensure that individuals, family caregivers, and other unpaid caregivers are integral in all aspects of collaboration and partnership.
HIT funding – broadband funding; enhance infrastructure with funding for EHRs
RECOMMENDATION 5.7: Enhance health information technology infrastructure to improve care coordination and quality of care In order to improve care coordination, communication capabilities, and the ability to share documents and patient information between health care providers, health care systems, technology product vendors, and data repositories, the North Carolina Department of Information Technology should: 1. Provide continued funding and support to municipalities and community organizations in rural North Carolina and other areas where access to broadband is limited, to enhance broadband access and to maintain broadband infrastructure 2. Consider renewal of funding to the NC DHHS Office of Rural Health NC Electronic Health Record Funding Program, with a new strategic focus on determining the feasibility of providing funding for small health care providers (including home health agencies and long-term care/skilled nursing facilities) to purchase and implement electronic medical record technologies in order to meet connection requirements/deadlines for NC HealthConnex
Pros: broadband is high priority item with Governor and legislature
Cons: Funds for EHR program depleted. Would need General Assembly to fund to renew this program.
Appropriations for County Programs
RECOMMENDATION 3.3: Assess drivers of health and connect individuals with serious illness and caregivers with appropriate non-clinical service.
- Health care providers working with individuals with serious illness and their caregivers should use the North Carolina Standardized Screening Tool (as developed for NC Medicaid) and/or other applicable screening tools, including caregiver burden assessment tools, to identify and address drivers of health and unmet needs. Tools should be used on an ongoing/regular basis
- The North Carolina Department of Health and Human Services should develop a communication plan to engage with providers of serious illness care to increase awareness of and capacity to implement screening tools listed above
- NCCARE360 should develop a plan to integrate specific resources for individuals with serious illness and family caregivers (such as referrals to respite care and advance care planning assistance) into resource platforms including No Wrong Door, NC 2-1-1, and NCCARE360, with particular attention to promoting equity of access to services
- NCCARE360 should enhance capacity to evaluate appropriate connection to and receipt of services on a statewide level 5. The North Carolina General Assembly and/or County Commissioners should increase appropriations to the State-County Special Assistance Program in order to increase capacity to meet non-clinical needs of individuals with serious illness
Not Unlawful Practice of Law
RECOMMENDATION 4.7-4: Ease administrative burden, increase participation in completing documents, and improve accuracy of advance directives
4. Revise NCGS § 130A Article 21 to include statutory language to ensure that distribution to individuals of written advance directives and assistance in completion and execution of such forms by health care providers (or other non-legal professionals) shall not constitute the unauthorized practice of law
RECOMMENDATION 4.8-2: Ease administrative burden and increase uptake and accessibility of portable medical order
2. The North Carolina General Assembly should amend NCGS § 90-21.13 to include an emergency provision for patients to identify a health care decision-maker if they do not have one upon admission to a health care facility
The issues identified here are the Coalitions priorities for 2021; however, they do not represent the entirety of the issues which the Coalition supports and on which it takes a position.