Under 65 and Living in Long-Term Care: What APS Needs to Know
 

By Kendra Kuehn, MSW, APS TARC Subject Matter Expert

June 2024

According to the U.S. Centers for Disease Control and Prevention (CDC), about 27% of adults in the United States have some type of disability. CDC data shows that 12.8% of adults have a cognition disability, 12.1% have a mobility disability, and 7.2% have an independent living disability. Census Bureau data highlights that rural residents are 14.7% more likely to experience a disability while also encountering fewer resources and services. The 2021 National Adult Maltreatment Reporting System (NAMRS) Adult Maltreatment Report reflects that these are also the top types of disabilities seen by adult protective services (APS) programs. Studies have found that people with disabilities are particularly at risk of abuse, neglect (self), and exploitation, and NAMRS notes that about 25% of APS clients are people with disabilities under the age of 65.

Younger Residents of Facilities: The Stats

While strides have been made in enabling adults under the age of 65 with disabilities to live independently in a community of their choice, a small but growing number live in various types of facilities. These residents face unique challenges and concerns that APS should be cognizant of when responding to reports of adult maltreatment. The CDC’s National Post-acute and Long-Term Care Study (NPALS) tracks data in facilities including residential care communities, nursing homes, and more. The most recent NPALS data in 2020 found that adults under the age of 65 make up 17.9% of nursing home residents, 5.8% of residential care communities, 10.7% of inpatient rehabilitation facilities, and 22.8% of long-term care hospitals. Residential care communities include assisted living and adult care homes. The National Long-Term Care Ombudsman Resource Center notes that younger adults with disabilities are a fast-growing population with great diversity. The Long-Term Care Ombudsman is a federally funded program advocating on behalf of adults living in facilities regardless of age.

What APS Needs to Know

The U.S. Administration for Community Living’s (ACL) National Voluntary Consensus Guidelines for State APS Systems recommends APS serve eligible adults regardless of setting. This includes determining how best to serve younger residents of facilities. Just as APS recognizes differences in generations of clients who live outside of facilities and its impact on an investigation and rapport building, the same is apparent for residents of facilities. Younger residents often have different disabilities than older residents, including intellectual and developmental disabilities as well as disabilities due to brain injury.
 

Recognizing the unique context of younger adults living in facilities can help APS work with the client through the investigation and in referring to services. NORS highlights that younger residents have different interests and needs, from dietary preference to technology use. They may also be dealing with different emotions of anger and perceived loss of freedom, which may impact building rapport. Research indicates the challenge of younger residents living in facilities that are not well designed for them. One staff member in the report observed a lack of trust because the resident moved to a nursing home against their wishes. For the long-term care ombudsman and others like APS, NORS emphasizes avoiding paternalism and engaging in honest dialogue.

Partners and Resources

APS programs should proactively reach out to partners and facilities in their area to build connections ahead of cases. Offering education, cross-training, and creating awareness is critical. Building understanding enhances training and work of both APS and partners. Below are just a few national resources to start the discussion.
 

Starting with a likely familiar resource, the Long-Term Care Ombudsman Program was established by the Older Americans Act in 1972 and is overseen by the ACL. While the program originally only covered nursing homes, it has expanded over the years to include other residential facilities such as assisted living and board and care homes. Ombudsman programs resolve resident complaints, provide information to residents on services and support, advocate for and comment on laws and regulations impacting residents’ rights, and more. Ombudsmen work to represent the resident and abide by their wishes, which includes limitations on disclosure and reporting without the resident’s consent. Despite these limitations, the state and local ombudsman programs and their facility knowledge can be a key partner in supporting younger residents. Learn more about the LTC Ombudsman program and find state contacts at the NORC website and NAPSA and NORS Webinar “We Have Unique Roles, But Often Support the Same Consumer: LTCOP and APS Collaboration.”
 

The Protection and Advocacy Systems (P&A) are also housed in ACL. P&As are federally mandated programs in all states, DC, and the territories to provide support for the rights of people with disabilities, including intellectual or developmental disabilities, primarily through legally based advocacy. Additionally, they often provide referrals, information resources, training and technical assistance to policymakers, self-advocacy training, and raise general awareness. P&As cover clients of all ages and in a variety of situations. The most recent data available notes that 11% of P&A clients lived in community residential homes and 3% in nursing homes. P&As are at the forefront of protecting the rights of people with disabilities and can be an ally when advocacy is needed. Find your P&A agency through ACL’s listings and learn more about the P&A network through the National Disability Rights Network and the APS TARC webinar  “Overview of ACL’s Protection and Advocacy Systems.”

Keep up to date with training from the National APS Training Center. Enrichment courses available include working with the Long-term Care Ombudsman Program and resources and services for people with disabilities. As you move through the courses, consider how the learning is applicable to working with younger adults in facilities. Staff may want to reflect on other training that is needed or partners that should be engaged through their multi-disciplinary teams (MDTs) or other means.

Limitations and Looking Forward

As noted at the beginning, the portion of younger adults with disabilities living in facilities, ranging from group homes to nursing homes, continues to expand. But there is limited information and research out there. The recent National Process Evaluation of Adult Protective Services Systems conducted by the APS TARC included a review of disability literature. While it was clear that people with disabilities experience maltreatment, there was less clarity on deeper questions and limited research on disabilities except intellectual disabilities. Further research will benefit building programs, policies, and legislation that fully support younger residents. The evaluation authors concluded that, “Given the growth in literature on this topic in the past decade, coming decades could result in increased knowledge about this understudied and underserved population.”

The APS Blog is updated regularly with posts from contributing authors and new publications from the APS TARC.

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