Long-term services and support for all communities nationwide have a growing need for more programs and interventions than ever before. Health care advancements, vaccination programs, and educational resources enable people to live longer. Learn the value of long-term services and support, the need for accurate assessments, and how to make informed choices for seniors or families with intellectual and developmental disabilities (IDD).

Introduction

According to the U S. Census Bureau, the 65-and-older population grew by over a third (34.2% or 13,787,044) during the past decade, and by 3.2% (1,688,924) from 2018 to 2019. This population will increase as the aging process continues, with a growing population requiring more assistance to accomplish activities of daily living. Intellectual disability affects about 1% of the population with 85% of those diagnosed with a mild intellectual disability. Long-term care services and support range from social companionship to total care residential communities, depending upon the needs of the individual client. Examples of available service options with support systems include:

Companion Programs

These services provide opportunities to connect with volunteers to assist older adults and those with IDD accomplish tasks such as grocery shopping, meal preparations, or housekeeping. Many online services are available including the federal agency Americorps, which is committed to improving lives, strengthening communities, and bringing people together. Several organizations such as the Visiting Angels offer various services across the country including companionship to give family members or caregivers a respite break.

Home Care Services

Many people choose to remain living at home where they are familiar with their environment, can maintain neighborly friendships, and are surrounded by desired personal belongings. Caregivers visit clients and provide services such as personal bathing care, transport to local medical appointments, housekeeping duties, and prescription collections. Nurses provide in-home assessments, skin treatments, and referrals for care including mental health well-being services. Today’s technology allows for online ordering for groceries, meals, or medical equipment to be delivered directly to the client at home as a part of promoting independent living.

Community Care Settings

By understanding the different types of community care facilities and the services they offer, clients and families can make informed decisions about the most suitable placement for their unique needs and preferences.

Clients with multiple care needs, intellectual or developmental disabilities, mental health concerns, and overall health declines may require a community care placement. These health care facilities have shifted away from older institutional practices to more modern, person-centered care approaches in homelike settings. Community care organizations offer different levels of health care known as independent living gated communities, assisted living facilities, residential care housing, and nursing home settings. Community care services may vary by location but commonly offer day center activities, outpatient services, and seasonal events.

Independent Living Gated Communities

Gated communities are designed for people with minimum assistance needs and provide access to on-site communal provisions such as picnic areas, swimming pools, and fitness centers. These may also include clubhouses, libraries, computer rooms, arts and crafts rooms, and hobby workshops. Various activities and events are organized, such as movie nights, group outings, exercise classes, and educational seminars, to foster a sense of community and enhance residents’ quality of life. Older adults and people with milder disabilities may feel a sense of extra security residing within this type of community living setting.

Assisted Living

Clients can receive more assistance with their activities of daily living in these community facilities than independent living communities. Health care staff provide required client care needs including bathing supervision, daily meals, and meaningful activities. These facilities typically offer multiple levels of care to accommodate clients with varying needs. Services may range from basic housekeeping and medication management to more comprehensive support for clients with mobility issues, memory impairments, or chronic health conditions. Facilities often conduct assessments to determine the appropriate level of care for each resident and create individualized care plans to ensure they receive the necessary support.

Housing Options for Adults With Special Needs

Clients may reside with their families, or decide to live in special housing associations designed for IDD clients with staff present to promote person-centered independent living. Group homes can be privately owned or government-funded and vary in eligibility requirements, costs, and housing availability. Clients experience living in a real community setting that may include following house rules, assisting with capability-appropriate household chores, and achieving weekly goals. Housing locations with client-safe outdoor settings offer access to an array of supervised activities designed to promote healthy social interactions and to invite community members to visit or participate in facility-held events.

Clients with multiple disabilities including intellectual disabilities requiring more dependent care may need to reside at intermediate care facilities, commonly referred to as ICFs. These residential group homes provide 24-hour staffing supervision, educational classes, and meaningful person-centered activities. ICFs may offer day service programs, and employment programs, with additional opportunities to participate in local community events. Clients must qualify for financial Medicaid, which is offered by all states as an optional benefit. For this program, each state determines its own eligibility criteria, but states must adhere to certain federal requirements.

Evolution of Long-Term Services and Support

The National Care Planning Council reports that over the last 50 years, there has been a gradual change from the use of nursing homes toward the use of home care and community living arrangements. Each decade passing has seen improvements in the standards of long-term care delivery with increased growth and demand for accessing home health services. Individualized care plans have replaced institution-created plans and changed health care provider-built homes with community care settings to warmly reflect the people who live there, instead of a clinical-type institutional environment with no client inclusion by design.

The turn of the century saw the introduction of culture change practices for enhancing person-centered care choices instead of using facility-driven measures. Client preferences are the center of the care action plans, and information is obtained directly from the person or from family members. A dedicated team of health care professionals becomes familiar with each client’s preferences such as religious choices, preferred foods, favorite activities, and personal daily routines to meet their individual well-being needs.

People living with IDD now have greater choices that continue to grow, and clients are more integrated with society than in previous eras. Historical perspectives of intellectual disabilities show how people were given negative labels and often lived in below-standard conditions. Advocate groups, education resources, and shifts in health care delivery methods enabled positive changes toward understanding client diagnoses and how quality care is provided.

Culture change has the responsibility of impacting, updating, and modernizing the language used within all health care settings. Old, outdated terms have been replaced with titles that describe the staff roles more accurately, and friendlier references are used in today’s modern settings. Other terms that are used reflect personable, accurate health care job descriptions such as “activities director,” “life enrichment manager,” or “personal care assistant”; these kinds of terms are positively relatable to clients and their families.

Benefits of Home and Community-Based Services (HCBS)

These programs support people with functional or cognitive challenges for living in the community and remaining at home longer. People with IDD may be eligible for school enrollment, adult day centers, or supported employment. Home services provided include assistance with bathing, meal preparation, laundry provisions, physical therapy, and mental health well-being. Home visits benefit clients through continual social interactions, welfare checks, and achieving activities of daily living for better health outcomes.

Medicaid funds the majority of available programs by supporting clients to continue living at home on a more cost-effective basis, using person-centered care approaches for better quality-of-life outcomes for clients. Community care services can allow people to enjoy the comforts of being at home, including familiarity with their surroundings, and family members may qualify to be their paid caregivers. Medicaid clients include eligible low-income families, pregnant women, older adults, and people with disabilities.

HCBS Challenges and Opportunities

Health care providers everywhere have encountered staff shortages, which impact the quality of services from even the best of care providers. The COVID-19 pandemic compounded staffing difficulties with additional caregiver burnout, and the health care industry is still recovering in efforts to hire and retain its employees. Opportunities for improving staffing levels include raising starting pay rates, increasing medical coverage benefits for employees, offering attractive paid time off options, and encouraging stronger working relationships between management and direct care personnel to create a warm, working environment.

Client assessment procedures may be subject to cultural biases that create limited access to services. States vary in the services and locations providing programs that may or may not represent the needs of populations there. A client can reach a point of decline where a facility setting placement is inevitable, and this is a difficult, life-changing decision for the person and their family. Home and community-based services and long-term health care providers who collaborate well together can make this a less challenging transition for all involved. For example, a person may qualify for hospice care, also known as end-of-life care, at home.

There are several opportunities for interventions that can be applied to enhance the benefits of HCBS. Medicaid may not cover all expenses on a case-by-case basis, but a small investment promotes client safety and independence. The implementation of suitable interventions enables the client to continue living in the community and enhances their well-being. Interventions utilized may include:

• Prescription online refills and home deliveries.
• Installing medical alert systems for around-the-clock emergency assistance.
• Caregiver visits to promote client hygiene and well-being.
• Door key code access for essential personnel.
• Adapting shelving or cabinets to client-required reach levels.
• Weekly grocery deliveries.
• Housekeeping services.
• Access to necessary medical or adaptive devices.
• Physical and Occupational Therapies.
• Transportation to and from medical appointments.

Long-term health care providers are continuing their journey toward shifting the focus from institutionalized, structured methods to creating individualized, person-centered care plans and making their client preferences a priority. Home-based programs can provide services for eligible clients including people with disabilities who remain in the community, promoting a sense of belonging in society and strengthening family connections. Home care providers give clients not only the services they need but also bring a sense of hope, and much-needed emotional support, reducing the chances of becoming isolated or withdrawn.

As our society continues to age and individuals face increasingly complex health challenges, it is essential to consider the financial implications of long-term care, both in terms of covered and non-covered expenses. Expanding currently available health care services by providing greater workforce hiring incentives needs attention to accommodate the demands of the generations to come. Promoting and supporting community-based living allows facility settings to focus on dependent clients requiring specialized care and gives opportunities for more capable clients to remain in their own homes or group homes by personal preference.

By prioritizing community-based living, we can ensure that facility settings concentrate on clients who require specialized care, while more independent individuals have the opportunity to remain in their homes or group homes according to their preferences. This approach not only benefits clients and their families but also promotes a more inclusive and compassionate society that values the well-being and autonomy of all its members.