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In the ever-evolving landscape of long-term care, it’s essential for professionals to stay updated on the best care practices and approaches. One area that warrants particular attention is the active treatment for the developmentally disabled, an approach that not only empowers these individuals but also enhances their quality of life.

Individuals with developmental disabilities require specialized care and therapeutic interventions that cater to their specific needs. This is where active treatment steps in by providing a structured and comprehensive approach that promotes self-sufficiency and independence. In this guide, we will delve into the world of active treatment for the developmentally disabled. We will explore what it means, how it works, and why it’s crucial in a long-term care setting.

What are developmental disabilities? Developmental disabilities are a group of conditions that occur due to an impairment in physical, learning, language, or behavior areas. Anything from intellectual disabilities to disorders—such as autism and Down syndrome—count as developmental disabilities. According to the CMS ICF/IDD Glossary, intellectual disability is determined based on three criteria: an IQ below 70-75; significant limitations in adaptive skill areas; and the presence of the condition from childhood (age 18 or less).

Disabilities typically start during the developmental period, may impact day-to-day functioning, and generally last throughout a person’s lifetime. Some of the more common developmental disabilities include:

An individual in a facility that provides active treatment for the developmentally disabled.
Disabilities typically start during the developmental period, may impact day-to-day functioning, and generally last throughout a person’s lifetime.
  • Intellectual Disabilities: Characterized by significant limitations in intellectual functioning (such as reasoning, learning, and problem-solving) and in adaptive behavior, which covers a range of everyday skills.
  • Cerebral Palsy: A group of disorders that affect a person’s ability to move and maintain balance and posture. Cerebral palsy is the most common motor disability in childhood.
  • Autism Spectrum Disorders (ASD): These conditions are characterized by challenges with social skills, repetitive behaviors, speech, and nonverbal communication. The term “spectrum” reflects the wide variation in challenges and strengths possessed by each person with autism.

What resources are available to such individuals? Those with intellectual disabilities require specialized care and therapeutic interventions catering to their needs. An example of such a facility would be an Intermediate Care Facility (ICF). The primary function of Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID) is to provide health or rehabilitative services to individuals with intellectual disabilities. The aim is to deliver personalized, holistic care that helps improve the quality of life 

What Is Active Treatment?

To answer what is active treatment and why it is valuable, we must first recognize that individuals with developmental disabilities may require life-long care and support in various areas of life. Active treatment for the developmentally disabled represents a significant shift in how we approach the care of individuals with developmental disabilities. It’s not merely about providing care—it’s about empowering these individuals to lead fulfilling, self-sufficient lives. 

Active treatment is a 24-hour continuous, comprehensive, and structured approach to delivering healthcare and other services to individuals with developmental disabilities. It consists of a wide range of therapeutic, habitation, and rehabilitation activities designed to help developmentally disabled individuals achieve the highest level of independence and self-sufficiency. An Intermediate Care Facility for Individuals with Developmental Disabilities (ICF/DD) provides active treatment in a community group or long-term care residential setting. 

Key components and goals of active treatment

Active treatment within an ICF/DD context involves:

A senior resident with a nurse who has received training on what is active treatment.
Active treatment for the developmentally disabled represents a significant shift in how we approach the care of individuals with developmental disabilities.
  • A comprehensive, individualized program that includes services around the clock—during the day, retirement, and any other services billed as a pass-through of the ICF/DD.
  • The integration of consistent training approaches, materials, and learning opportunities throughout each 24-hour period.

And the goals of active treatment include:

  • Helping individuals with developmental disabilities acquire behaviors necessary for self-determination and independence
  • Preventing or decelerating any regression or loss of current optimal functional status, which empowers individuals with developmental disabilities to lead enriched, independent lives

Compliance and conditions of participation in active treatment

For an ICF/DD to maintain regulatory compliance, it must ensure:

  • Every person in the facility receives a continuous active treatment program
  • Individuals maintain their highest possible functioning level, even amidst limiting conditions
  • The program helps individuals develop increased skills and independence in various functional living areas
  • Continuous training, supervision, and support are provided to help individuals navigate their daily routines

Healthcare professionals in an ICF/DD must recognize that active treatment cannot be provided if:

  • Individuals can function independently without continuous training, supervision, and support
  • Individuals are not involved in activities addressing their individualized priority needs
  • There are no opportunities for individuals to practice new or existing skills and make choices in their daily routines
  • An individual’s functional abilities have decreased or haven’t improved, and the ICF/DD has not identified the barriers or implemented a plan to overcome them

Also of note is that active treatment in an ICF/DD setting goes beyond healthcare. It’s about fostering independence, self-determination, and the highest possible quality of life for individuals with developmental disabilities. By understanding the components, objectives, and parameters of active treatment, caregivers can ensure that every patient receiving care in an ICF/DD is given the necessary tools, support, and opportunities to thrive.

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Active Treatment: Developmental Disabilities and the Challenges Faced by Long-Term Care Staff

When it comes to active treatment, developmental disabilities among long-term care residents require nurses to overcome several hurdles. These challenges can impact both the quality of care and the overall active treatment for the developmentally disabled. Examples of these challenges include:

1. Communication barriers

Effective communication is crucial in any healthcare setting, but it can pose a unique challenge when caring for individuals with developmental disabilities. Assisting with daily living is an example of active treatment, and when an individual has difficulty expressing their needs or understanding instructions, it may lead to misunderstandings and anxiety.

When communicating with individuals who have developmental disabilities, there are some important strategies to consider in order to respect their autonomy and dignity:

A nurse caring for a resident after receiving training on active treatment, developmental disabilities and resident care requirements.
When communicating with individuals who have developmental disabilities, interact in the same manner and maintain the same tone of voice you would with anyone else.
  • Interact in the same manner and maintain a regular tone of voice as you would with anyone else.
  • Don’t raise your voice unnecessarily.
  • Refrain from feeling awkward when using expressions, such as “Do you see what I mean?” even when conversing with someone who has a vision impairment.
  • Address individuals with disabilities directly and treat them as adults, rather than directing your conversation towards their companion.
  • Instead of assuming they require help, take the time to inquire whether they need assistance.
  • Prioritize the use of people-first language by putting the person before the disability in your phrasing, such as “a person with a disability” rather than “the disabled person”.
  • Ensure that you employ effective communication strategies, such as positioning yourself at their eye level and maintaining appropriate eye contact.

2. Limited time to complete tasks

Long-term care nurses may be overworked, as the industry is in the midst of a staffing crisis. This especially applies to those caring for individuals with developmental disabilities, as such patients may require additional time, patience, and care.

If nurses fully understand what is active treatment, then they can use long-term care scheduling software to make adjustments to their schedules and streamline administrative tasks. Additionally, implementing team-based care during active treatment for the developmentally disabled means tasks are shared among different members of the healthcare team. Through this method of care, a facility can alleviate the time pressure on individual nurses.

3. Inadequate staffing and training 

Staffing shortages and a lack of specialized training can prevent the provision of optimal care for individuals with developmental disabilities. To combat this issue, healthcare facilities should introduce and prioritize specialized training programs in developmental disability care. Moreover, advocating for better staffing policies can help ensure an adequate nurse-to-patient ratio, improving the quality of care.

4. The need for greater involvement of caregivers and other professionals

Caregivers and other professionals, like therapists or social workers, play a critical role in active treatment for the developmentally disabled. Their involvement can provide valuable insights into the individual’s needs, preferences, and routines. Facilities must create an inclusive care approach that actively involves these key caregivers. This can be done through regular meetings to discuss care plans, transparent communication about the individual’s progress, and taking their input into account when making decisions.

The Future of Active Treatment for the Developmentally Disabled in Long-Term Care

As the nature of active treatment for the developmentally disabled is complex and multifaceted, managing and coordinating care can be challenging. However, advancements in healthcare technology, specifically Electronic Health Records (EHRs), can change that through:

  • Personalized care and efficient data handling: Experience Care, a leading provider of long-term care EHR software, has developed sophisticated tools that allow for more efficient data handling. This enables care providers to access a more comprehensive view of a patient’s history, current condition, and progress over time, which in turn supports a more personalized care strategy.
  • A holistic and integrated approach to care: By providing a complete picture of a patient’s health and well-being, EHRs allow care providers to consider all aspects of a patient’s life when developing and adjusting treatment plans. This integrated perspective promotes a more holistic approach to care, which is especially beneficial for individuals with developmental disabilities, whose needs often span various domains of health and wellness.
  • Increased care coordination and collaboration: Through a shared electronic system like the one offered by Experience Care, team members can easily access the same up-to-date resident information. This not only saves time but also reduces the potential for communication errors and oversights. The result is improved coordination of care, enhanced decision-making, and, ultimately, better resident outcomes. 

Looking ahead, the future of active treatment for the developmentally disabled in long-term care is bright, thanks largely to the capabilities of EHRs like those provided by Experience Care. As we continue to refine these tools and learn to use them more effectively, we can look forward to even more personalized, holistic, and coordinated care for the developmentally disabled population.

For more on recent trends in long-term care, read our blog and subscribe to the LTC Heroes podcast.

Elijah Oling Wanga