An Assessment of Information & Assistance Services For Seniors Needing Long-term Care in North Carolina: What has changed and what comes next for the Aging Network?

Policy Question: How should North Carolina’s Aging Network provide information and assistance services so that all older adults (and their caregivers) looking for long-term care receive appropriate guidance?

Introduction:

Information and Assistance (I&A) programs inform, counsel and connect people seeking long-term care with services that could meet their needs. The Older Americans Act mandated that every Area Agency on Aging (of which there are 17 in North Carolina) establish I&A programs in their region. North Carolina has 42 I&A programs registered with the Division of Aging and Adult Services; more counties offer these services without OAA funds. As the population ages, more people will need a well-informed, local agency is critical to help them navigate the long-term care system and access services. Older adults and their families face such a complicated array of choices and decisions – about not only health care, but also housing, finances, and basic household tasks.

Ten years ago, the North Carolina Institute of Medicine (NCIOM) delivered its report, “A Long-Term Care Plan for North Carolina: Final Report” to the North Carolina Department of Health and Human Services (DHHS). Early in its deliberations, the Task Force concluded “one of its goals would be to propose a system that would allow consumers to find their way into and through the system with ease.” Once the state was awarded a Real Choice Systems Grant, these recommendations became a roadmap for North Carolina, which launched two initiatives to improve seniors’ access to long-term care information and counseling: a web-based resource system called NCcareLink and the regional Community Resources Connections (CRC) program. My assessment focuses on how the Aging Network and its existing I&A programs have responded to these initiatives and worked to create a more accessible and understandable system. This report is especially relevant to counties that are beginning the transformation to a CRC and to state policymakers responsible for NCcareLink. s

Methodology:

I selected eight counties (Alamance, Beaufort, Forsyth, Henderson, Lenoir, Macon, Mecklenburg, and Surry) and contacted the primary agencies that serve older adults. The counties vary by geographic region, diversity, population density, and proportion of adults over 65. I conducted a total of 28 interviews. In each county, my goal was to identify and interview an organization that plays a central role in informing older adults about their options. In five counties, this was an agency that receives state or county-funding to provide information and assistance. 

In addition to the main I&A provider, I interviewed other organizations at the regional and local level that serve the same population. This allowed me to, first, gauge the “No Wrong Door” model by discussing the skills and tools each agency used to make accurate, effective referrals. Secondly, it spoke to a community’s recognition of the designated I&A provider (e.g. how many people are relying on the Senior Center instead of the Council on Aging, and for what reason). 

Lastly, to gain some understanding of how other states have addressed the issues, I interviewed employees at Departments of Aging in Oregon, Ohio, and Virginia, which have also established online databases. 

Key Findings:

Many of the key findings from my interviews are fundamental and already known to providers and the state. 

1. The role of the AAA and its staff is not clearly defined. The potential of AAAs are tremendous, but the history of AAAs in North Carolina has led to weakly defined roles that could impede easy entry into the system. In North Carolina, few people know even what the AAA does. A clearer definition and articulation of roles could help the staff members direct calls efficiently and reduce the number of inappropriate calls in the first place. The state can change its management strategy and level of supervision of the AAAs to promote certain roles and foster greater clarity.

2. Everyone in the Aging Network receives calls from older adults. Both in counties that have formal I&A programs and those that do not, every agency in the Aging Network is regularly contacted by older adults who do not know where to go for information and assistance. Seniors have diverse and often specific needs; when providers respond to these calls, it can be a time-intensive process and, if the provider is not experienced in I&A, may not lead to the best match for the consumer.

3. Older adults have trouble identifying their needs. Older adults recognize one need (e.g. help with light housekeeping) but they may not realize they also are struggling to walk and need to install grab bars in their home to prevent falls. The reason I&A is so valuable is that trained individuals can ascertain this information through phone conversations; it is much harder – but not impossible – to gather the same information online.

4. Older adults delay seeking help until they are in dire need. Information & Assistance programs usually receive calls from older adults only when their functioning has deteriorated to the point where they need immediate assistance. Culture plays an enormous role. It is very difficult for the Aging Network to convince people to call at the first sign of a need, rather than in a crisis. As the demands on the Aging Network increase, the AAA may have less time and resources to promote services at health fairs or reach out to pastors. Before the system is so strained that there is little or no time for community outreach, the Aging Network needs to find more effective ways to promote their services.

5. Caregivers are seeking out information online and being directed to many different sites. Adult children looking for information are likely to begin with a Google search. Even once NCcareLink is fully developed and being promoted by the Aging Network, policymakers need to be aware of the websites that appear at the top of a Google search query, such as private rehabilitation and home healthcare providers. Additionally, online information needs to be integrated with off-line service delivery. People who are searching for information online are often looking for phone numbers of service providers. They may want the phone number to a provider of specific services (e.g. transportation, personal care) or to a public office (e.g. DSS) that can screen for Medicaid eligibility. Either way, these websites will play an important role in directing people to services, so the way services are described and pathways are mapped online needs to match the offline system

6. Changes to the long-term care system need to allow for county differences, while also moving toward consistency. Every county has organized their services differently. The CRC pilot projects and expansions demonstrate that every county will interpret and implement programs in their own way. However, it would be unfortunate if these variations prevented counties from sharing insights about what works or created additional confusion for senior citizens and caregivers. Moving forward, the goal for the state is to ensure information is readily available to all aging adults, without prescribing a set of certain set of services that may be unrealistic for or incompatible with a particular county’s current organization.

Recommendations

In keeping with the NCIOM’s initial recommendation, any new alternatives must advance the three goals that information should be readily available and easily accessed, understandable, and uniform for all in need.

Objective #1: Reduce the time it takes for older adults to find the services they need

1. Identify at least one I&A program in every county.
2. Expand and modify online presence of all Aging Network agencies to make them consistent and senior-friendly.
3. Prioritize good website design over expediency.
4. Work with Aging Network staff to collect and record data on caller demographics (age, race, location) and level of functioning
5. Allow providers the opportunity to see the same software interface that Aging Network agencies are using.

Objective #2: Make it easier for older adults to identify if they need information or assistance

6. Learn from states that have implemented needs assessment tools.
7. Create a .pdf version of the state’s needs assessment tool that can be emailed to or downloaded by interested caregivers.

Objective #3: Provide high-quality assistance services

8. Train I&A providers in options counseling.
9. Implement benefits or incentives that help recruit and retain exceptional staff at I&A agencies.

Objective #4: Engage the private, for-profit sector to reduce the strain on the public and non-profit Aging Network

10. Provide training to I&A programs to promote services provided in the private, for-profit sector.
11. Expand or replicate the Forsyth Senior Services’ Elder Care Choices program, which provides consultation and referral services to employees as part of subscribing companies' employee benefits packages.