When we at Foothold talk about residential care, it relates primarily to people with intellectual or developmental disabilities — a population with a range of support needs. Some people with I/DD require minimal levels of support, while others benefit most from community integration and may need more extensive supervision, care, and assistance with their activities of daily living.
Here, we examine the many facets of residential care for people with I/DD, including its role in the health care ecosystem, its various forms, how it has changed over time, and what the future may hold for it and its participants.
What Is Residential Care?
The purpose of residential care is to serve, attend to, and empower individuals facing challenges in their everyday lives, whether it’s due to age, behavioral concerns, or disabilities in a comfortable and familiar setting. With the care provided in a residential facility, individuals can enjoy a degree of independence that they might otherwise struggle to attain.
Types of Residential Care Facilities
Given the broad scope of residential care, there isn’t just one type of residential care facility or just one set of residential care services. In fact, we can divide this category of long-term care into four subcategories:
Nursing homes are facilities that specialize in custodial care for individuals with illnesses, cognitive impairment, or disabilities. Nursing home staff provide both medical and personal services, including meal preparation, medication, and assistance with ADLs. Some nursing homes may also provide rehabilitation services.
Supportive-living facilities are care options for individuals who wish to maintain a level of independence but may need assistance with ADLs. The care at a supportive-living facility is more supervisory than custodial, and social events are an important mainstay. Residents receive certain services, such as meal delivery and medication, but normally live in separate quarters or apartments.
Group homes usually provide personal care but not nursing or medical care. They also tend to be smaller than other types of residential care facilities, ordinarily housing a handful of people. Residents receive assistance with ADLs and medication management. The cozier setting provides a more comfortable, home-like atmosphere, making it suitable for individuals who struggle to live away from their own homes but still need some degree of supervision.
Exploring the Many Faces of Residential Care
Facility divisions aside, the residential care system involves a multitude of roles. On one side are the individuals who receive residential care services, a large and diverse group of people with a vast array of unique needs. On the other side are the entities and professionals who help deliver the services that the residents require, which include:
Residential Care Organizations
By “residential care organizations,” think not only of the facilities but also the executive and administrative personnel who oversee their operations. You can also classify organizations as either for-profit or nonprofit. Both types of organizations provide care services and are beholden to the same regulatory requirements; the difference between them is the bottom-line motive.
For-profit organizations, as you can infer from the name, aim to earn money. Owned and operated by individuals or private companies, they often have financial backers to answer to. In contrast, nonprofit residential care organizations have no profit motive. The money they generate goes back into the organization.
Residential Care Employees
Various professionals are responsible for creating amenable residential care environments and delivering care to residents. The most visible residential care employees are probably the care workers. This is a fairly broad occupation that can include registered nurses, assistants, and attendants. The exact scope of each role may differ, but the overall objective is to provide care, support, and companionship, with duties that include:
- Assisting with ADLs, including shaving, showering, and dressing.
- Performing household tasks.
- Preparing and serving meals.
- Monitoring and administering medications, if applicable.
- Monitoring residents’ health and well-being.
- Updating care records.
- Keeping residents company and conversing with them.
Some residential care facilities keep activity coordinators on staff. The coordinator’s duty is to organize on- and off-premises events, such as shopping trips, entertainment, and exercise groups. Such activities are important for social interaction and relationship-building, which are invaluable for maintaining the well-being of the residents.
Playing a quieter but still vital role are maintenance, custodial, and housekeeping workers — the staff members who ensure that residents enjoy a clean, amenable environment. Cleanliness and order promote happiness and improve residents’ safety by minimizing contagions and allergens, eliminating fire hazards, and removing obstacles that may cause falls and other injurious events.
Together, the employees of a residential care facility help to ensure that residents have spaces that foster independence and dignity, which can be particularly meaningful to a population that has historically experienced disparities.
Inclusivity: A New Dawn for I/DD Residential Services
Reflecting the trend toward higher-quality services, residential care programs for people with I/DD have been shifting away from institutional environments and toward community-integrated models.
Community integration refers to the assimilation of people with disabilities into an existing community, thereby minimizing the separation of a group from the larger population. Such integration is crucial because people with I/DD have historically been made to live apart from others, a circumstance that has perhaps encouraged society to regard them as a separate and “other” population. To undo the separation is to undo the negative connotations that accompany it while giving people with I/DD equal access to opportunities for:
- Civic engagement.
- Health care.
- Participation in social institutions.
Community integration, as it relates to residential care, entails not just residence in a facility within a larger body of people but also smaller residential environments and greater individual choice — factors that promote dignity and self-empowerment.
Group homes are an example of a community-integrated model that’s well suited to people with I/DD. The home-like setting is removed from the ordinary institutional atmosphere of a nursing home, but the onsite staff still provides help with daily routine management, meal preparation, and social activities. The environment aims to balance fostering independence and providing the necessary support in a communal living setting.
Other examples of community-integrated models include:
Supported living is an arrangement in which an individual aged 18 or older continues living either on their own or in their family home while receiving professional support. Under this model, individuals with I/DD enjoy the advantages of living on their own terms and participating in community life. At the same time, they receive tailored services, including daily chore assistance, medical care, personal care, and therapies, with an emphasis on individualizing the support based on their abilities, preferences, and goals.
Family support refers to services designed to assist families who care for a person with an I/DD. As noted by the American Association on Intellectual and Developmental Disabilities, most people with I/DD live with their families, who are their primary support. Many family caregivers face increasing challenges because:
- They themselves are aging and must make arrangements for the continued care of their family member.
- The person they care for is a parent and needs additional support to care for their own family.
The family support model offers both caregivers and care recipients a range of services, including financial assistance, respite care, counseling, caregiver training, and guidance in navigating health care and education systems. With such safety nets in place, families are spared the feeling of powerlessness as they strive to overcome the financial and coordinative challenges of providing care and ensuring care in their absence. The model relieves pressure and creates a more positive home environment for every member of the family.
Under the shared living model, an individual with an I/DD lives with an individual member or family within the wider community. It’s essentially a roommate arrangement. The parties interact with one another and the community, participating in activities and neighborhood events.
Shared living differs from an ordinary roommate situation in that one party provides personal care, perhaps in the form of services such as meal preparation, transportation, and medication management. Should the individual with an I/DD require other forms of care, the roommate may help make arrangements. Case managers perform periodic check-ins, and the individual has access to emergency support.
The intimate, familiar atmosphere of shared living promotes equity between the parties, which is crucial for empowering individuals with I/DD to live more independently. It also introduces the potential for long-term, meaningful relationships in a respectful, reciprocal setting, opportunities for which are often more difficult to find for individuals with I/DD.
Personalized Care: The Evolution of Assisted Living
Park Place in Portland, Oregon, opened in 1981 and is considered the first modern assisted-living facility. At the time, it represented a major leap forward in how we provide dignified care to those in need. Rather than entering a starkly communal and institutional environment, Park Place care recipients lived in private, lockable quarters but could still interact with others in community areas. Over time, the model Park Place introduced evolved to focus more on the individual, which gave rise to personalized care.
Personalizing care means providing care recipients with services that match their unique needs. It involves understanding the qualities of the person receiving care and their preferences for how to conduct their life. Such an approach empowers the care recipient by individualizing them, demonstrating that they aren’t an anonymous member of a population but a fully realized, autonomous person.
A guiding principle of assisted living is to dignify the individual by maximizing their independence. The care that an individual receives is largely supervisory, and imparting unwanted services could be construed as patronizing, which defies the principle of dignity. Say that an assisted-living resident would prefer to cook their own meals. To provide them with prepared meals instead could be to suggest that they’re incapable of caring for themselves in that regard. But to honor their preference positions them as an active participant in their care journey.
Assistive Technology in Residential Care
Just as electronic documentation systems have changed how providers deliver care, assistive technology has reshaped residential care management for people with I/DD. Like much of what we’ve discussed here, assistive technology is a broad category that has some overlap with inclusive design. It includes relatively simple objects, such as walkers, to cutting-edge peripherals, including speech-output software and artificial larynxes. But all assistive technology has at least one trait in common: to help users achieve greater levels of independence.
Technology evolves rapidly and has been instrumental to advances in residential care management. Consider, for example, the rise of smart tech, the intersection of computing, telecommunications, and automation. Today, we can outfit homes with smart remote-monitoring systems that allow individuals with I/DD to live independently with minimal direct supervision from care providers. Because such systems transmit essential information about care recipients to their caregivers around the clock, there’s no need for individuals to schedule their days around check-ins or care services. The tech helps them to achieve ordinariness in their day-to-day lives.
Importantly, assistive technology helps to converge other areas of residential care for people with I/DD — namely, inclusivity and personalized care. For example, it can expand residential care access to families who are trying to arrange for provisions when they can no longer perform caregiving functions, and the relatively hands-off nature of the tech supports individuals’ lifestyle preferences.
The Road Ahead in Residential Care
No one can predict the future with total accuracy, but we can observe current activities to envision potential trends. At present, the most important trend relates to artificial intelligence and its applications in assistive technology.
AI-boosted assistive technology was a key area of focus at a recent Consumer Electronics Show. Many of the devices showcased at the 2023 CES were targeted at individuals with physical disabilities but could also be useful for those with I/DD. The devices included a biometric keyless entry lock that can help individuals more easily overcome concerns with motor coordination and autonomous vehicles designed for people with gait and mobility challenges.
Outside of CES, other AI-based technologies to support people with disabilities are in development. One intriguing piece of software is UInclude — an inclusive writing tool that can detect language that may be discriminatory against certain populations. While it’s designed for employers rather than job seekers, widespread use of the tool could expand employment opportunities by helping companies write job listings that are inviting to people with I/DD.
The well-known AI technology ChatGPT also has potential applications in residential care for people with I/DD. For example, ChatGPT can help job seekers with I/DD achieve greater independence in their search by refining their resumes or cover letters or assisting with drafting emails.
A Vision of Comprehensive Care: Shaping Tomorrow’s Care Today
Nonprofit leaders are likely to be the vanguards when it comes to influencing trends in advancing residential care for people with I/DD. Broadly speaking, they are the ones with the motivation to improve care for their residents and the necessary financial resources to do so through reinvested funds. Nonprofits are leading the way in providing high-quality care, but it’s up to others to follow their vision of accessible, high-quality, compassionate, and person-centered care for all.