Health Promotion through Advanced Physical Activity Programs for Individuals with Intellectual and Developmental Disabilities

Abstract

Individuals with intellectual and developmental disabilities (IDD) present multiple co-morbidities within the medical, physiological, and mental areas, thereby putting them at an increased risk for a variety of illnesses. Moreover, many of them are living a life of inactivity, thereby worsening their health condition. Many researchers have identified a clear relationship between physical fitness and wellness. This chapter will describe the poor physical condition of individuals with IDD and will suggest some intervention possibilities, focusing on motivational factors and integration into the person’s daily living routines. While some physical activity possibilities are free and can be found online, other more advanced tools for promoting an active lifestyle can be implemented with this group of people. The present chapter will suggest research-based effective strategies to enhance the physical activity of people with IDD through remote activity intervention programs, virtual reality training, and personally adapted simple training applications.

1. Introduction

1.1 Intellectual and developmental disability

Since 1908, intellectual and developmental disability (IDD) has been repeatedly defined by the American association of intellectual and developmental disability (AAIDD) (formerly American Association on Mental Retardation).

The definition of IDD has four main components: Developmental, mental, adaptive, and the need for care and support [1, 2]. The acceptable definition of IDD in the Western world includes the three following components:

1. Disability level in mental functioning – intelligence – refers to a general mental ability, such as learning, making conclusions, problem-solving, and others. An intellectual quotient (IQ) under 70IQ means two standard deviations below the population average and is defined as intellectual disability. Intellectual disability within the range of 55–70IQ is defined as mild IDD, within the range of 40–54IQ – moderate IDD, within the range of 25–39IQ – severe IDD, and IQ under 24IQ is defined as profound IDD [1].

2. Significant disability in adaptive behavior – adaptive behavior is a collection of conceptual, social, and practical skills learned and performed by people in everyday life. Limitation in adaptive behavior affects everyday life and the ability to cope with changes and environmental demands. In practice, this means lowering about two standard deviations from the average in standardized adaptation tests [3, 4]. These skills are distributed into three major categories:

   1. Conceptual skills: Including language and learning, time concepts, quantity concepts, self-direction, etc.

   2. Social skills: Interpersonal skills, social responsibility, self-esteem, naiveté, caution, solving social problems, ability to act according to rules, abide by laws, etc.

   3. Practical skills – activities of daily living: Self-care, occupational skills, maintaining self-health, meeting timetables/routine, safety, using money, using public transportation, using the phone, etc.

3. IDD signs first appear before age 18 [1, 5]. This definition is intended to distinguish people who are born with IDD from adults who have a cognitive disability i.e., attained at an older age against the background of various old age diseases such as Alzheimer’s and the like.

Within these three categories, the four levels of intellectual disability are generally defined as follows:

• Mild IDD: People who demonstrate independence in most areas of daily living and require ad hoc support only in situations of change or crisis.

• Moderate IDD: People who need limited support in all areas of daily living, which is given regularly for short periods of time in order to learn, practice, and become competent in using all their skills.

• Severe IDD: People who need increased, regular support i.e., not limited in time in all areas of daily living in order to function actively. Without such support, individuals are unable to fulfill their basic needs.

• Profound IDD: People who need immediate support from an external support provider in fulfilling actions in all areas of daily living [6].

Therefore, IDD is a comprehensive term covering cognitive and physical limitations resulting from central nervous system dysfunction, surfacing in childhood with lifelong consequences [7].

IDD can arise from a variety of causes, encompassing genetic, environmental, and perinatal factors. Genetic mutations, either through additions, deletions, or alterations in specific genes or chromosome abnormalities, contribute significantly to the onset of IDD. Exposure to harmful substances during pregnancy, such as alcohol or infections, can adversely impact fetal development, manifesting in various cognitive and neurological impairments [8]. Moreover, preterm births, complications during childbirth, and traumatic brain injuries stand as significant contributors to the complex etiology of IDD [9].

The World Health Organization and other leading organizations within the realm of IDD perceive IDD as a dynamic phenomenon that may change over time [10]. This change derives from the understanding that a person with IDD can improve his functioning in most living areas through personally customized programs and suitable support [10]. On the other hand, an individual with IDD can demonstrate relapse in his abilities against the background of functional and medical problems, which showed higher prevalence compared to the general population [1]. Especially when severe and profound IDD is concerned, additional severe neurological and psychiatric co-morbidity is also often diagnosed, which is expressed, among others, in defects in the communicative, academic, physical, and behavioral functioning in the various environments [1, 11, 12, 13, 14].

Co-morbidity, which characterizes this population, makes it more “fragile” than the normative population [15], with significantly increased health needs which in practice lead to relatively many hospitalizations and excessive use of drugs, the efficiency of which is not always apparent [16]. All these require the intervention of healthcare professionals [17] and providing increased customized care.

Moreover, the multiple medical needs in this population constitute a financial burden to the families and the health and welfare system [18]. Therefore, there are quite a few recommendations in the research literature to try to improve the control and therapy systems by institutionalizing multi-systemic mechanisms supported by cost-effective and efficient medical screening tools, enabling cost reduction [18].

However, as these needs are multiple, it is difficult to provide them [19]. To effectively and quickly identify whether there have been any changes in the condition of the service recipient, suitable assessment tools need to be devised. On the one hand, these tools will make it easier for direct caregivers to identify changes without increasing the load of tasks they already have, devise therapeutic programs, and advance all adaptive areas, and on the other hand, they will allow wise allocation of existing health resources [20]. At the same time, the approach that direct caregivers should be consulted when making therapeutic changes is increasingly rooted [21].

1.2 Unmet therapeutic needs

Equity in healthcare should be a minimum standard for everyone in all countries. However, despite existing evidence in the literature regarding the ill health of individuals with IDD, this minority group still suffers disproportionately and to an unnecessary degree [22]. Given their more complex needs, one might anticipate that individuals with IDD would receive increased assistance from mainstream services. Paradoxically, however, accessing these services can prove challenging for them, and mainstream providers may struggle to customize their care to suit their unique needs. Unfortunately, this situation has occasionally resulted in healthcare disparities for people with IDD [23]. Moreover, many authors suggest a lack of adequate health screening and preventative care in this population. Co-morbidities among adults with IDD are high and increase with age; environmental risks, however, much like those found in the population at large, such as lack of physical activity (PA) combined with inappropriate nutrition resulting in overweight and obesity, are prevalent. However, these risk factors are modifiable and preventable, and if addressed appropriately, they could lead to an enhanced overall health status within the population of individuals with IDD [24]. In order to prevent complications associated with the disabilities associated with IDD, there is a need for a comprehensive and preventive therapeutic intervention. Such therapeutic approaches should include physical therapy and hydrotherapy (to improve mobility and cardio-vascular fitness, reduce spasticity, and prevent physical deformations), occupational therapy (to enhance function within activities of daily living and attend to sensory dysfunctions), speech therapy (to enhance communication skills and improve eating abilities), special education teachers (gain computer access, enhance education, literacy skills, and social skills), music therapy (for self-expression and emotional well-being), and more. Therefore, it is in the hands of healthcare from all professions to enhance care for our clients with IDD, establishing better and intensified evaluation and therapeutic interventions to answer their needs.

1.3 Physical activity of people with IDD

Numerous investigations have indicated that consistent engagement in PA, sports, and exercise contributes to enhanced physical (i.e., balance and muscle strength) and psychosocial health and quality of life among individuals with IDD [25, 26, 27, 28, 29] but failed to impact the body mass index and body composition parameters. The main effects of PA for individuals with IDD were repeatedly confirmed in the literature through meta-analysis, as summarized in Table 1.

Reference	Aim	No. of included papers and subjects (age range)	Included levels of IDD	Included trainings	Main findings related to people with IDD
Kapsal et al. [30]	To synthesize the literature and quantify the effects of PA on the physical and psychosocial health of youth with intellectual disabilities.	109 papers,; 4200 subjects (age range: 5–19.9y).	32.3% mild; 30.3% mild and moderate; 11.6% moderate; 0.6% severe/profound; 25.2% not reported.	Aerobic training, resistance training, movement/sport skills training, general physical education/activity, and balance/core stability.	PA had a large positive effect on reaction time (ES = 1.13, 95% CI 0.69–1.58), flexibility (ES = 0.91, 95% CI 0.74–1.08), and movement/sport skills (ES = 0.81, 95% CI 0.67–0.96).; A moderate effect was observed for cardiovascular/cardiorespiratory fitness (ES = 0.79, 95% CI 0.69–0.94), muscular strength/endurance (ES = 0.78, 95% CI 0.64–0.91), physical functioning (ES = 0.66, 95% CI 0.43–0.90), balance/core stability (ES = 0.68, 95% CI 0.45–0.91), and physiological outcomes (ES = 0.51, 95% CI 0.42–0.69). No effect of PA was observed for BMI (ES = 0.035, p = 0.403).; PA had a large effect on psychological (ES = 0.754, 95% CI 0.461–1.048), behavioral (ES = 0.986, 95% CI 0.654–1.319), and social (0.723, 95% CI 0.443–1.002) outcomes.; A moderate effect was reported for cognitive outcomes (ES = 0.534, 95% CI 0.239–0.829).; No effect was found for emotional outcomes (ES = 0.249, 95% CI -0.201-0.699).
Jeng et al. [31]	To determine whether exercise training improves skill-related fitness in adolescents with IDD.	14 papers,; 386 subjects (age range: 13.6–18.8y).	57.1% mild; 21.4% mild and moderate; 14.4% moderate; 7.1% moderate and severe/profound.	Circuit training, muscle strengthening, unified sports, hippo therapy, Swiss ball exercise, traditional Greek dancing treadmill and Wii Sports game training, sensorimotor training, device-assisted training, water aerobic exercise, low-intensity run/walk training, aerobic dance, walking exercise, Taekwondo, adapted dancing, road-running training, and horseback-riding machine training.	Exercise training has positive moderate to large effects on agility (ES = 0.781, 95% CI 1.279–0.284), power (ES = 0.760, 95% CI 0.441–1.080), reaction time to light (ES = 1.465, 95% CI 2.433–0.497), and sound cues (ES = 1.286, 95% CI 1.735–0.838), and speed (ES = 0.526, 95% CI 0.835–0.218).; No effect was found for static (ES = 0.82, 95% CI -2.12 – 0.48) and dynamic balance on the balance beam (ES = −0.73, 95% CI -1.55 – 0.09).
Shin & Park [32]	To synthesize the effects of physical exercise programs on individuals with ID	14 papers,; N/R; subjects (means range: 8.5–60.9y).	N/R; The authors reported that they included “participants with IDD, except for diagnoses of Down syndrome, Prader-Willi syndrome, Rett syndrome, and Williams syndrome.”	Rhythmic gymnastics programs, balance and muscle strength exercises, exercise/training programs, aerobic exercise programs, physical fitness programs, endurance training, health promotion programs, self-directed strength training, PA interventions, and school-based cardiovascular fitness.	Exercise programs had large positive effects on self-esteem (ES = 0.910, 95% CI 0.75–1.08), force (ES = 1.190, 95% CI 0.62–1.78), balance (ES = 1.150, 95% CI 0.68–1.61), pulmonary ventilation (ES = 0.816, 95% CI 0.03–1.61), and other physiological measures (not specified) (ES = 2.180, 95% CI 1.17–3.18).; A moderate effect was observed for BMI (ES = −0.649, 95% CI -0.83 – −0.47) and VO2 peak (ES = 0.422, 95% CI 0.21–0.63).; No effect was observed for the weight (ES = −0.02, 95% CI -0.34 – 0.29), body fat (ES = 0.12, 95% CI -0.15 – 0.40), lean mass (ES = 0.023, 95% CI -0.30 – 0.76), and heart rate (ES = 0.08, 95% CI -0.23 – 0.39).
St. John, Borschneck, & Cairney [33]	To assess the effectiveness of exercise interventions based on experimental designs on individuals with IDD.	18 papers,; 799 subjects (age range: N/R).	34.9% mild and moderate; 4.6% severe/profound; 16.3% Down syndrome; 44.2% not reported.	N/R; The authors reported, “The intervention must have been one that was specific to exercise. Any and all programs were included regardless of setting.”	Exercise programs had large effects on balance (ES = 1.25, 95% CI 0.39–2.90) and lower body musculoskeletal strength (ES = 0.86, 95% CI 0.30–1.42).; A moderate effect was observed for the upper body musculoskeletal strength (ES = 0.55, 95% CI 0.17–1.26).; No effect was observed for aerobic fitness (ES = 0.13, 95% CI -0.11 – 0.37), flexibility (ES = −0.19, 95% CI -1.73 – 1.34), and step count (ES = 0.30, 95% CI -0.15 – 0.75).
Maïano et al. [34]	To examine the effects of exercise interventions designed to improve balance in young people with intellectual disabilities.	15 papers,; 403 subjects (age range: 8–25y).	60.0% mild; 26.7% mild and moderate; 6.7% moderate; 6.6% not reported.	Balance exercises, strength exercises, computerized balance exercises, creative dance activities, hippotherapy exercises, rope-skipping exercises, Swiss ball exercises, tai chi exercises, and trampolines.	Exercise programs had a large effect on static balance (ES = 0.82, 95% CI 0.46–1.18).; A moderate effect was found for dynamic balance (ES = 0.79, 95% CI 0.11–1.46).
Obrusnikova, Firkin, & Farquhar [35]	To review clinical trials that evaluated the effects of aerobic exercise interventions on cardiorespiratory fitness in adults with IDD.	16 papers,; 549 subjects (age range: 21–58y).	43.8% mild and moderate; 6.2% moderate and severe/profound; 6.2% mild to severe/profound; 43.8% not reported.	Aerobic exercise and aerobic exercise combined with resistance, balance, or flexibility training.	Aerobic exercise interventions had a moderate effect on cardiorespiratory fitness (ES = 0.44, 95% CI 0.22–0.66), 6MWT (ES = 0.48, 95% CI 0.14–0.83, and both absolute (ES = 0.57, 95% CI 0.30–0.84) and relative (ES = 0.50, 95% CI 0.20–0.80) VO2 peak.
Harris et al. [36]	To review the randomized controlled trials on the effects of PA interventions to prevent weight gain in young adults with IDD.	6 papers,; 178 subjects (age range: 10–30y).	83.3% mild and moderate; 16.7% not reported.	Bicycle ergometer and aerobic training, strength and endurance training, conditioning and plyometric jumps training, whole-body vibration and isometric exercise, aerobic treadmill ergometer, and aerobic rowing ergometer intervention.	No effect of PA was observed for body weight (ES = 0.45, 95% CI -1.04 – 0.72), BMI (ES = 0.29, 95% CI -0.64 – 0.51), waist circumference (ES = 1.47, 95% CI -4.03 – 1.75), percentage body fat (ES = 0.81, 95% CI -2.03 – 1.15), fat mass (ES = 0.68, 95% CI -1.60 – 1.08), and lean mass (ES = 0.43, 95% CI -0.08 – 1.62).
Yang, Liang, & Hui-Ping Sit [37]	To determine the effects of PA on mental health, including psychological health and cognitive function, in children and adolescents with IDD.	15 papers,; 630 subjects (age range: 5-17y)	26.7% mild; 5.3% mild and moderate; 20% not reported.	Competitive sports, non-competitive sports, cognitive exercise, therapeutic exercise, and aerobic exercise.	PA has a large effect on overall mental health (ES = 0.90, 95% CI 0.66–1.14) and cognitive function (ES = 1.24, 95% CI 0.87–1.60).; A moderate effect was found for psychological health (ES = 0.54, 95% CI 0.37–0.71).

Table 1.

Synthesis of recent meta-analyses investigating the effect of PA and exercise training on physical, physiological, and psychological outcomes in children and adults with IDD.

Abbreviation list: IDD = Intellectual and developmental disability; y = Years; PA = Physical activity; ES = Effect size; CI = Confidence interval; BMI = Body mass index; N/R = Not reported; VO₂ = Oxygen volume; 6MWT = Six-minute walking test.

However, despite the essential nature of PA for this population, it was overlooked in national PA guidelines and public health recommendations until 2020, when the revised PA guidelines from the World Health Organization (WHO) explicitly included mention of people with an IDD, marking the first acknowledgment of this population in such guidelines [25].

Nevertheless, while at least 150 minutes of exercise per week for adults aged 18 to 64 [26], individuals with IDD are believed to participate in comparatively fewer PA, posing challenges in achieving optimal health [27]. Research indicates that individuals with IDD participate in only 17.5–33% of the recommended PA levels [27]. Consequently, this population has a higher obesity rate and lower physical fitness and cardiovascular endurance [28] compared to their counterparts without IDD. In addition, adults with IDD exhibit a declining PA rate, leading to sedentary behavior and an increased risk of fatigue-related diseases, low fitness levels, and obesity [29, 38]. This emphasizes the importance of addressing physical inactivity early in life to mitigate the risk of long-term health issues [39]. Moreover, sedentary lifestyles and a lack of engagement in PA contribute significantly to the substantial lifetime costs associated with health and non-healthcare services related to IDD [40]. This economic burden, coupled with the need for lifelong treatment and services, highlights the importance of addressing PA levels in individuals with IDD.

Despite the well-established health benefits of PA, reports indicate that elevating this population’s PA levels may be challenging and require time to become effective [41]. Numerous personal, family, social, financial, and environmental obstacles impede the engagement of individuals with IDD in PA [42].

Personal barriers to PA for people with IDD include specific and generic health problems associated with IDD (e.g., being overweight, heart issues, unpleasant body feelings, etc.), the lack of motivation toward PA, the physical and intellectual disabilities of the participants, and the presence of behavioral problems. Interestingly, PA itself may positively influence many of such personal barriers. For instance, consistent engagement in regular physical exercise enhances aerobic endurance, cardiovascular capacity, flexibility, and agility while reducing adipose mass in people with IDD [43]. Furthermore, joining PA has been reported as a strategy to mitigate and diminish negative behaviors [44] and to increase the motor functional level of people with IDD [45]. The mutual influence of PA on its barriers and vice-versa may generate virtuous (if performing PA simplifies the barriers overcome) or vicious (if the barriers limit the engagement in PA) circles. Individuating and using personal motivational factors to enhance the willingness of people with IDD to participate in PA may help in promoting a virtuous circle to establish. Performing PA in a group or within social interactive situations (e.g., involvement of peers with and without IDD, socialization moments, etc.), together with the provision of positive reinforcement for participation (e.g., being rewarded and praised, receiving medals and prizes, etc.), have been reported as facilitators for participation in PA [46, 47]. Moreover, personal factors such as the desire to look and feel good, determination to succeed, and a good understanding and knowledge of the benefits associated with PA act as facilitators for the involvement of individuals with IDD [46, 47]. This highlights the need for an explanation of the benefits of PA to people with IDD who often lack knowledge about maintaining a healthy lifestyle. These elements must be taken into high consideration when planning to enhance the PA level of an individual with IDD.

Furthermore, it was reported that an increased level of intellectual disability severity, along with the associated requirement for supervision, represents a constraint on engaging in PA [48]. Accordingly, Sundblom and coauthors [48] assert that the level of intellectual disability determines the PA intervention feasibility and the method of delivering it. In fact, due to the wide range of functional levels and complex needs shown by people with IDD and their families, highly individualized intervention programs are required to achieve behavioral change and promote PA in the population with IDD. Preliminary evidence in the field pointed out the importance of adapting the PA program to the individuals’ needs, incorporating it into their daily routine, and involving the individuals’ caregivers and environments [49, 50, 51, 52]. Daily routine integration may require a prolonged period of time before becoming effective, as people with IDD tend to resist modifications to their habits [44]. However, when an effective integration of the PA program into the daily routine is established, it could play as a facilitator in engagement in PA. Furthermore, Kapsal et al. [30], in their meta-analysis, remarked on the critical importance of the social nature of PA, suggesting that engaging in PA in groups may prove more beneficial for individuals with IDD (a table presenting the effectiveness of PA programs for individuals with IDD is presented as an appendix at the end of the current chapter (appendix 1).

Besides personal factors, several environmental factors may act as facilitators and barriers to PA and healthcare in general for people with IDD.

1.4 Obstacles to better care by the health system for a person with IDD

According to the literature, the factors limiting the quality of care for people with IDD within the health systems are several and were briefly presented below:

• Challenging communication – The difficulty in understanding the subjective condition of a person with IDD and gathering information regarding his medical background makes it difficult for health professionals to determine a correct anamnesis and needs. Unclear anamnesis is one of the factors preventing people with IDD from getting the best healthcare they need. Some individuals with IDD are unable to speak at all, which makes it difficult to identify symptoms and illnesses; these people will also have difficulty expressing pain and asking for help [53].

• Lack of cooperation on the part of individuals with IDD – Some with IDD are uncomfortable in unfamiliar situations and with unfamiliar people. Sometimes, it is impossible to explain to the person with IDD the importance of PA or medical procedures that may be painful/unpleasant, such as physical efforts, taking blood, measuring weight, and using various medical tools.

• Unconventional etiology and complex medical symptoms – In some cases, the etiology of diseases in individuals with IDD differs from that in neurotypical individuals. Such differences, or a combination of several diseases that present different symptoms simultaneously, make it difficult for the healthcare professional to locate the source of the disease. Moreover, individuals with IDD sometimes present a complex of several diseases and symptoms in one patient that can complicate and delay the treatment for that person [54].

• Lack of professional knowledge of the healthcare staff – The complexity and specific nature of medical conditions and symptoms require additional knowledge by the healthcare staff on top of the knowledge needed when treating a client within the general population. Despite this, in general, the knowledge and training of health professionals on issues related to IDD are lacking around the world. Therefore, it is unrealistic to expect a healthcare professional to be familiar with specific symptoms and signs associated with IDD [55].

• Service providers’ attitudes toward people with developmental disabilities – Some argue that this reason is the most challenging barrier [56]. A study that surveyed nurses’ attitudes about providing care to individuals with IDD found that more than 30% of respondents reported feeling uncomfortable carrying out health-promoting activities with individuals with IDD. When asked if they enjoy treating these patients like others, 22.9% said no. When asked whether they would like to transfer these patients to another caregiver, 12.5% answered yes [56].

• Tenure and experience of the treatment staff of individuals with IDD – In large health clinics, employee turnover is frequent. The tenure of the treating staff is essential for those with special needs. Staff permanence is important in light of medical problems and conditions that require good familiarity with the person with IDD and the establishment of therapist-patient relationships with proper rapport that enable ongoing and continuous treatment to be performed. With specific reference to PA, limited staff, the lack of instructors expert at adapted PA, and low level of interest of the staff in PA were reported as barriers to PA in people with IDD [46].

• Opinions of the individuals with IDD – Individuals with IDD were interviewed and asked about their preferences. They indicated that they preferred a doctor who is experienced in treating individuals with IDD over a more professional doctor [57]. This aspect emphasizes the need for experienced staff able to create an effective and empathetic therapeutic relationship with the person with IDD.

• Ethical issues and lack of specific procedures for individuals with IDD – When treating individuals with IDD, very complicated ethical problems arise regarding medical decision-making and agreement on the treatment plan by the therapists or by the person himself [58]. There are medical procedures that require the patient’s cooperation, which may be challenging to obtain from an individual with IDD. In such cases, special procedures can prevent unnecessary suffering of the client. In addition, since the staff treating an individual with IDD is more complex than is usually the norm, especially among residents living in the residential facilities, more factors, and related individuals (staff and family members) are involved in the decision-making process in a way that goes beyond the usual process for an individual without IDD.

• Accessibility problems and environmental limitations – The environment in health facilities is not always suitable and accessible for individuals with IDD, limiting their access to PA and facilities. Issues like the presence of architectural barriers, the absence of adapted facilities (such as gyms and sports centers), and community support (e.g., transportation services), burden the people with IDD and their caregivers [46]. Physical accessibility requires elevators, ramps, cranes, and wide passages. In addition, the accessibility of the treatment also includes special adjustments such as a variety of means of communication according to the types of disabilities [56].

• Financing – Individuals with special needs usually suffer from many problems, including heavy economic costs. Various health treatments and accessing PA services are not their top priority, especially when these treatments are not funded or subsidized by the state. In addition, treatment for this population requires a longer time than regular treatments due to the need to perform specific demonstrations and explanations.

• Unlike people in the general population, individuals with IDD do not always know their options and rights. As a result, they depend on family, housing, and healthcare staff who care for them. Organizing the PA program in a way that allows everyone around the person with IDD to participate without too many sacrifices in terms of time may enable a higher participation rate in PA. This concept emphasizes the need for the involvement of caregivers in planning the healthcare path in general and the PA program specifically.

In accordance with the difficulties arising from the literature on the medical treatment of this population, it was found at the same time that the current health condition of people with IDD is deficient.

In the 30s of the previous millennium, the mean age at death for people with IDD was about 19 years; in the 1970s, this number rose to about 59 years; in the 1990s, to 66 years; and today, it is close to general life expectancy. For instance, the mean age at death for Down syndrome (DS) was 9 years in the 1920s and 56 years today [59]. Advancements in medical technology and heightened social awareness during the twentieth century have contributed to this remarkable increase in lifespan. Historically, many individuals with IDD faced premature mortality due to associated medical complications, congenital anomalies, and infections. This semi-positive trend should be further improved by updating assessment and therapeutic efforts until individuals with IDD receive up-to-date medical and habilitative support adapted to current medical facilities and their multiple medical and functional needs.

The present chapter explores new and up-to-date assessments and therapeutic possibilities for individuals with IDD with the intent of such technologies to become common practice in the treatment of individuals with IDD.

2. Evaluation

Since IDD is defined as a dynamic situation, adults with IDD it is to have the functioning level of this group of clients assessed once a period (depending on the guidelines by the authorities). However, the shortage in therapeutic services and other barriers mentioned earlier within the current chapter make such evaluation an unmet burden for the managing healthcare professionals. Moreover, the complexity of medical conditions presented by individuals with IDD and the complexity of existing assessment tools makes it impossible to meet such demands without increasing the load of tasks the healthcare providers already have [12, 57]. Therefore, meeting these demands necessitates constructing new and comprehensive assessment tools available online and easy enough to be used by direct care providers [21]. Such an approach will make it easier for direct caregivers to identify changes without increasing the load of tasks they already have, devise therapeutic programs, and advance all adaptive areas. On the other hand, they will allow wise allocation of existing health resources [20].

Due to the difficulties mentioned, we constructed a new scale, the Functional Screening Tool for Adults with Intellectual and Developmental Disabilities (FST-IDD). The new screening tool has been built as an online tool based on existing questionnaires and following the most up-to-date IDD definitions by AAIDD and the WHO. The tool was examined and found to be valid, reliable, and sensitive. It also has high psychometric values for quick detection of changes in the functioning of adult service recipients with IDD. This new scale was published in a series of articles [60, 61, 62] and can be found and used to enhance periodical evaluations of individuals with IDD who are under the reader’s care.

3. Therapeutic intervention

3.1 Embedding exercise routines in daily situations

The caregivers of the individual with IDD should not be limited to relying on health-related disciplines, and the therapeutic intervention should not be limited to what is administered in the treatment room or during individually applied sessions (direct therapy/hands-on). In order to attain a continuous effect, therapists and caregivers should cooperate with the care providers and families to construct a comprehensive intervention that taps into natural resources and intertwines within daily activities and situations. Many have asserted that an activation program taught to caregivers/families was highly recommended throughout the life of the individual with IDD, and regular activity was recommended for this population’s long-lasting health status [63].

It is therefore recommended that caregivers implement an exercise plan in order to construct a supportive network around the client. Such day-by-day and hour-by-hour support will allow everyone involved in caring for the individual with IDD to be aware of his\her needs and, therefore, construct and support a supplementary management program. One such program reported in the past by the first author is a physical intervention program that meets many positive aspects. It has been running in a residential center for about 20 years with a group of young individuals with DS now aged 32–35 years. Since adolescence, this group has participated in movement and music recreation activities. Using the artistic product of this activity, they started to present a show that presented their drumming and dancing skills within their residential center on holidays and special occasions. As time went by, their achievements led to a growing interest in their performance by external organizations, leading to a steady stream of requests for external performances. In order to respond to the growing demand and upgrade their professional performance, the group now meets for three 2-hour practice sessions a week, with increasing practice intensity before performance dates. Over the past 4 years, a cohort of healthy children from a conventional school has been seamlessly integrated into the existing group of DS dancers [19].

The program’s benefit lies in incorporating intense, high-level PA several times per week, intertwined with the outgoing/happy nature of individuals with DS; it holds a strong motivation appeal (no dropouts over 20 years). The program’s success suggests that when a program’s motivational aspects are high enough, even individuals with DS who usually prefer a sedentary lifestyle can maintain a continuous healthy and active life.

The concept and outcome of this program correspond with the authors who claim that creative aspects, such as music, movement, and dance, can significantly affect the development of individuals with IDD and their adherence to exercise programs such as the one described above [64]. In this example, the later inclusion of a group of healthy dancers/singers enabled the participants with IDD to further expose their friendly, outgoing nature. It spiced up their performance while corresponding with recommendations of the WHO [65] and the United Nations [66] regarding the need for community participation of individuals with IDD within the general population.

3.2 A few words on motivation

Motivated individuals will be engaged with activities, persist with challenging tasks, believe themselves competent, see success as within their control, and experience pleasure when they succeed. Early motivation predicts later success in typically developing children [67] and children with IDD [68].

Nevertheless, individuals with IDD have been shown to present motivational deficits [69, 70]. Some studies suggest that when performing physical and recreational activities, individuals with IDD were found to be less involved in actually engaging in activities than their typically developing peers less involved [71].

The finding of a vast literature review regarding the motivation of individuals with IDD supports the notion that social factors (e.g., peer modeling) together with environmental factors (e.g., audio and audio-visual reinforcements) may be effective in initiating and maintaining participation of individuals with IDD in prolonged PA programs essential for their health and well-being [72]. One way to increase motivation to participate in and adhere to PA programs is by using exciting and appealing techniques. Therefore, the next part of the chapter will present a few settings and techniques that were found effective in enhancing the participation of individuals with IDD in PA programs.

4. Exciting new technologies

4.1 Telerehabilitation

Telerehabilitation refers to providing rehabilitation services through telecommunication technology, such as video conferencing, mobile applications, and other digital platforms [73]. This approach has gained significant attention and adoption, especially in light of the COVID-19 pandemic, which has limited in-person services in many settings. The WHO and the World Bank [74], in their co-produced World Report on Disability, concluded that there is growing evidence supporting the efficacy and effectiveness of telerehabilitation and confirmed the efficacy of remote rehabilitation as an effective service delivery model for rehabilitation professionals (i.e., telerehabilitation).

Preliminary reports suggest the positive effect of such intervention mode for delivering health services for children and adults with IDD [75, 76, 77, 78], autism spectrum disorder [79, 80], and for addressing communicational needs of young children with severe neurodevelopmental disabilities [81, 82]. Moreover, several comparative studies concluded that there is no significant difference in clinical outcomes between in-person health services and those achieved through telerehabilitation [83, 84, 85, 86].

Telerehabilitation offers several potential benefits for the care of people with IDD and their families, including:

• Accessibility – Telerehabilitation can increase access to services for individuals with IDD, especially those in remote or underserved areas where specialized services might not be readily available, preventing unnecessary delays in care and support, and facilitating early intervention [87, 88].

• Continuity of care – Telerehabilitation can facilitate ongoing monitoring and support, ensuring that individuals with IDD receive consistent care and intervention over time [89].

• Convenience – Telehealth eliminates the need for travel for individuals with IDD and their families, which can be particularly challenging for those with mobility issues or transportation barriers [90].

• Customization – Telerehabilitation interventions can be tailored to meet the unique needs of individuals with IDD and their families. A combination of multiple telerehabilitation strategies (e.g., integration of video calls, videos and photos exchange and discussion, web-based monitoring tools, parent coaching with and without the person with IDD, direct activity with the person, and others) may be needed to provide the required support.

• A window into the patient’s daily living environment – As telerehabilitation sessions can occur virtually everywhere and participants involved in such interventions often connect from their houses, telerehabilitation offers the professional a unique occasion to observe and assess the person’s daily living environment, facilitating the provision of activity programs better intertwined into the person’s daily routine.

• Collaboration – Telerehabilitation simplifies communication and information exchange between the people involved in the patient’s care, facilitating meetings between the person with IDD, parents, and clinicians, as well as between clinicians themselves [89].

Telerehabilitation aimed at improving the PA of people with IDD involves using digital platforms and technologies to remotely deliver personalized exercise programs, therapeutic interventions, and PA support. This approach seeks to enhance the physical health, motor skills, functional abilities, and overall well-being of individuals with IDD, leveraging the convenience and accessibility of telehealth solutions. Here (and depicted in Figure 1) are some specific aspects to consider when planning a telerehabilitation program aimed at enhancing the PA of people with IDD:

• Ecological exercise programs – Remotely provided exercise programs should be constructed based on the family’s daily routines and habits, aiming to integrate the program’s activities into the person’s living environment. PA integration into daily living tasks supports their performance [91] and helps to build the activity’s significance and a new and more active routine.

• Individualized program – The activity program should be highly individualized at several levels. Activity sessions duration and intensity, type of activity, and level of provided support should be planned based on the person’s attitude and physical and cognitive characteristics. The program goals setting should involve the family and, where possible, the person with IDD. The set goals must be realistic and attainable. Remote meeting planning should be regulated by mediating between the family’s availability and needs for support and supervision. Moreover, the health professional should choose the most indicated support strategy for the specific case. Each of these aspects should be monitored and eventually modified during the program implementation if needed [45].

• Progress monitoring and evaluation – Establishing mechanisms for monitoring progress, tracking outcomes, and evaluating the effectiveness of telerehabilitation interventions is essential to identify areas for improvement, make data-driven decisions, provide timely and meaningful feedback, and optimize the delivery of PA support and services for individuals with IDD.

• Motivation – The motivation level of the people with IDD and their families should be taken under strict monitoring in order to maintain a high level of adherence to the program. Motivational support may be provided by preventively individuating (together with the family members) the person’s motivational factors and integrating them into the activity program to enhance engagement and adherence to PA routines [77]. Moreover, progress tracking with emphasis on reached improvement (even if small) and a positive attitude of the health professional could support the family members’ motivation. Furthermore, the health professional’s availability to listen and welcome the reported difficulties by discussing the possible solutions with the family members could support their feelings toward the proposed program [76].

• Family and caregiver involvement – As already highlighted, involving family members, caregivers, and support staff in the telerehabilitation process can help to facilitate participation, provide additional support and supervision, and promote consistency in implementing PA programs and strategies in various settings, including home, community, and recreational environments [92].

• Multidisciplinary collaboration – Collaborating with multidisciplinary teams, including physiotherapists, occupational therapists, special educators, and other healthcare professionals, can help to ensure comprehensive assessment, planning, and delivery of PA interventions tailored to the unique needs and goals of individuals with IDD receiving telerehabilitation services.

Figure 1.

Key points to consider when planning a telerehabilitation program to enhance the PA of people with IDD.

In summary, telerehabilitation holds promise as a valuable and accessible modality for delivering health services to people with IDD, including those aimed at enhancing their PA level, reducing sedentary behaviors, leveraging technology to deliver personalized, accessible, and inclusive interventions tailored to the unique needs and preferences of this population. However, careful planning, individualization, collaboration, and ongoing evaluation are essential to address this population’s unique needs and challenges and ensure the provision of high-quality, person- and family-centered care through telehealth platforms. Moreover, telerehabilitation allows for increasing the frequency and intensity of activity programs, providing individualized activities in a comfortable and familiar environment for the person. It also enables monitoring and evaluating the person’s needs and progress, stimulating motivation, achieving better satisfaction, and potentially reducing service costs.

4.2 Virtual reality

Since the mid-1990s, daily life for many adults within the general population has become permeated with technology-driven activities, primarily due to the wide availability of mobile devices and low-cost personal computers that can run relevant software for various rehabilitation populations and purposes (e.g., [93]). Virtual game technology, and, more specifically, virtual reality (VR) gaming, has become commonplace, and it is now part of a clinician’s repertoire of available rehabilitative tools. As numerous clinicians and researchers continue to examine ways to increase PA participation and reduce the sedentary lifestyle of individuals with IDD [94], virtual game technology represents a new means of achieving such goals.

VR gaming may be described as using computer-based interactive simulations to present users with practice opportunities for engaging in realistic activities through artificial environments [95, 96]. Virtual games provide players with an experience in two- or three-dimensional simulated virtual environments (VEs) with which they can interact and respond at different levels of motor and cognitive ability to perform tasks that are motivating, meaningful, and purposeful [97, 98, 99, 100, 101].

In their review of various virtual reality rehabilitation applications for people with IDD, [102] supportively concluded that those few empirical studies that have examined VE use for people with IDD have shown it to be potentially effective and meaningful. Therefore, VR may have a role in removing the barriers that impede participation and rehabilitation for people with IDD.

Our experience suggests that VR. Gaming helps to enhance physical fitness in individuals with IDD [12, 103], and it is a means to enhance participation in leisure activities [104] and improve balance with the intent of reducing falls among individuals with IDD [105].

Moreover, to date, several VEs have been used for people with IDD, permitting an examination of the potential of VR and virtual games for teaching life skills, such as route learning [106], street crossing [107], preparation for giving witness evidence in a court of law [108], coping during natural disasters such as earthquakes [109], shopping [100], improving physical fitness [12, 103], augmenting sensorimotor functioning [110], and increasing cognitive skills, such as assessing sequential time passage [111] and spatial perception [112]. Other researchers have studied the practicality of VEs for social skills training [98, 113] and as a medium for leisure activities [104, 114].

Findings from research projects across the globe [12, 103, 115] suggest that virtual gaming addresses concerns regarding the poor physical and medical challenges of individuals with IDD. As was found by many, the ability of virtual gaming to motivate individuals with IDD and to promote their cooperation, involvement, and enjoyment of PA is likely to play an essential role in helping these individuals become more physically active [12, 103, 116, 117]. Therefore, the use of VR with individuals with IDD is highly recommended.

4.3 Therapeutic snoezelen intervention, a multi-sensory approach

We live our lives through our senses. It is by means of experiencing the senses that we develop an understanding of our body and, through it, about our environment [118]. Any medical problem that a person may exhibit, which will disturb his interaction with the environment, may influence his understanding and, as a result, may disturb his development, interactions, and participation. According to Longhorn [119], without sensation and awakening of the senses, people confronted with intellectual and functional challenges will find it very difficult to understand the world around them. As a result, they will have difficulty participating, learning, and functioning. The multi-sensory approach tries to find significance in the world through an adapted sensory environment and the help of an enabling therapist. This environment awakens the client’s interest, encouraging exploration and discovery of his surroundings. This exploration acts as a stepping-stone toward learning and development.

Mostly, people with IDD cannot create their own optimal environment, so it is up to us to do so. By providing a multi-sensory environment (MSE), we create a sheltered sensory experience for the client to explore. In this chapter section, we will review the benefits of an MSE called Snoezelen. The Snoezelen idea was initially designed in the 1970s in Holland and was mainly designed for people diagnosed with IDD. Snoezelen is a controlled MSE transmitting sensory stimulation through light effects, colors, sounds, music, scents, and all the combinations of different materials that can be explored with the senses and without verbal communication. So, therefore, Snoezelen can be a very helpful non-directive therapy for people with profound IDD [120]. The word Snoezelen combines two Dutch words: To doze and to sniff like a dog. The word doze indicates that a restful activity is involved, and the sniffing gives it a more sensory and dynamic aspect. The multi-sensory room is partially lit and provides sensory stimulation to the client and the therapist. The senses (such as hearing and sight, touch, taste, and smell) are provided harmoniously, whether alone or combined. They are provided according to the client’s choice. The treatment aims to find a balance between relaxation and activity within the framework of a safe, adapted environment by means of an enabling therapist [121].

When considering a suitable intervention program for the client with IDD, we reviewed the suggestions of experts in the field of IDD:

• close interpersonal contact [122];

• a quiet and reassuring environment may achieve a reduction in anxiety and agitation in individuals with IDD [123];

• music is of utmost value [124, 125];

• the child will respond best to gentle, loving care, which encourages activity in an interesting but quiet environment [126];

• encourage and facilitate learning without pressuring the person;

• provide face-to-face contact, talking, singing, and touching;

• comfort the person and allow withdrawal during agitation;

• encourage active supervised movement in soft play;

• provide gentle movement of limbs and joints through their full range [127].

All the above suggestions are an integral part of the MSE, making it a preferred intervention method for children, adolescents, and adults with IDD.

Despite its widespread use, relatively few research studies have examined this method’s efficiency. This is mainly the result of the fear expressed by the original founders that such exposure would eliminate the relaxed and intuitive nature of the experiential ambiance, which is crucial to the Snoezelen concept. In addition, most of the existing studies to date are based on anecdotal reports.

Therefore, the authors of the current chapter constructed a structured approach enabling systematic data gathering without harming the original cornerstones of the original concept of the Snoezelen.

Using the therapeutic snoezelen intervention (TSI) approach, the interaction within the Snoezelen environment is performed with accordance to the original concept of the Snoezelen: E.g., an adapted surrounding (set according to each client’s preferences and changed following new requests or signals by the client), an enabling facilitator (constantly observing the client, monitoring their signals and mediating their intervention accordingly), and an interaction were “nothing is demanded from the clients and everything is allowed” [128]. At the same time, pre-determined information regarding the client’s behaviors/challenges (i.e., How many times he took off his clothes, how many times he fell, and how many times he hit himself or others) is collected and compared with the same measures during the pre-Snoezelen intervention by the care-providers.

According to our analysis, elements contributing to the success of the TSI included [129]:

1. choosing high-quality personnel as therapists;

2. specifying target population by consulting with team members;

3. reducing the anxiety at first encounters;

4. provide a careful and organized training program for each Snoezelen/therapist;

5. pre-setting measurable therapeutic goals for each client;

6. systematic data gathering by the care providers’ staff;

7. systematic implementation of intervention several times per week;

8. systematic follow-up evaluations within the natural surroundings by the client’s care providers.

When the TSI was implemented, the program’s success was documented within several areas of intervention, among which, reducing challenging behaviors [106], enhancing motor and functional advancements [130], and improving the interaction of clients with family members [131].

The use of a MSE with individuals with IDD under the TSI method, enables an individually tailored intervention, with the therapists in charge of adapting the therapeutic program to each client beforehand while adapting each therapy session to the needs, demands, mood, and behavior of each client on a daily and even hourly basis. At the same time, the TSI method enables the collection of data presenting the gradual change of the service recipient.

5. Conclusion

Individuals with IDD are entitled to healthcare just as any other individual. However, despite their rights and although they are diagnosed with many more medical conditions necessitating proper health services and habilitation, they remain a marginal group of society that rarely receives the amount and quality of support they deserve. The current chapter was written to present the reader with up-to-date intervention methods to advance the opportunities for this group of clients.

Acknowledgments

The authors would like to thank the thousands of individuals with IDD who participated in our clinical work and research projects. Their involvement and needs are the source for constructing new evaluation and therapeutic methods. We thank them for teaching us how to properly care for them and become better therapists and human beings.

Conflict of interest

The authors declare no conflict of interest.