CHAPTER 2

LITERATURE REVIEW
Intellectual and developmental disabilities:

According to the tenth revision of the WHO (World Health Organization):

Intellectual disability (ID) is a disorder defined by the presence of incomplete or arrested
mental development, principally characterized by the deterioration of concrete functions at
each stage of development and that contribute to the overall level of intelligence, such as
cognitive, language, motor and socialization functions; in this anomaly, adaptation to the
environment is always affected. For ID, scores for intellectual development levels must be
determined based on all of the available information, including clinical signs, adaptive
behavior in the cultural medium of the individual and psychometric findings
On the other hand, the American Association on Intellectual and Developmental Disabilities
(AAIDD) indicates that in addition to a significantly sub-average intellectual functioning,
concomitant limitations are observed in two or more areas of adaptive skills, and the disorder
presents itself before the age of 22.
In summary, intellectual disability is characterized by evident limitations in intellectual
functioning and adaptive conduct, the latter expressed as conceptual, social and practical
adaptive skills. Therefore, for the study of ID, according to the AAIDD, five dimensions must
be considered , one of which was recently included: the dimension composed of participation,
interaction and social networks. This definition not only agrees with the International
Association for the Scientific Study of Intellectual Disability (IASSID), but also with the
recent World Health Organization’s International Classification of Functioning, Disability
and Health (ICF).( Gregorio Katz, 2008)
CLASSIFICATION OF IDD:
Intellectually challenged children with mild level

Approximately 85% of people who are intellectually challenged children fall into the mild

category. Their IQ ranges from 50 to 75, and they frequently pick up academic skills

equivalent to those of the sixth grade. With the help of their communities and their social

networks, they can eventually become largely independent and even live on their own.

Intellectually challenged children with moderate level

Modest mental challenged level is defined as 10% of the population of mentally challenged

people. Those who are moderately problem range in IQ from 35 to 55. They require only

light supervision to perform work-related and self-care duties. They typically learn how to
communicate in their early years and can live and work successfully in the community in a

supervised setting like a group home.

Intellectually challenged children with severe level

About 3 to 4 percent of the mentally challenged population is severely mental

problems .Severely challenged individuals have IQ scores of 20 to 40. They may master very

basic self-care skills and some communication skills. Many severely retarded individuals are

able to live in a group home.

Intellectually challenged children with Profound level

Only 1 to 2 percent of the mentally challenged population is classified as profoundly

retarded. Profoundly level of individuals have IQ scores under 20 to 25. They may be able to

develop basic self-care and communication skills with appropriate support and training. Their

mental challenges is often caused by an accompanying neurological disorder. The profoundly

level need a high level of structure and supervision.

The AAMR classification system focuses on the capabilities of the retarded individual rather

than on the limitations. The categories describe the level of support required. They are:

intermittent support, limited support, extensive support, and pervasive supports notified a

severe defect in moral development as the primary characteristic of mental challenged

children.

Intellectually challenged children was further divided into three levels of impairment:

“idiots” had their development arrested at the level of a 2-year-old; “imbeciles” were at the

developmental level of a 2- to 7-year-old; and “morons” were at the development of a 7- to

12-year-old.

The 1959 AAMR definition was the first to integrate formally the measurement of

intellectual capabilities and adaptive behavior functioning

This definition defined mental disorders as “sub average general intellectual functioning

which originates in the developmental period and is associated with impairment in adaptive

behavior” (Jacobson, 1999). Sub average intellectual functioning was defined as an IQ of 80

or less, with the developmental period extending only up to age 16

BARRIERS FACED BY PERSONS WITH IDD:

Adults with intellectual disability (ID) have a high rate of sedentary behavior, and participate in even

less regular physical activity than the general population. This disparity is striking considering the

epidemic crisis of sedentary living and its health consequences facing the general population . Like

sedentary living, adults with ID are also affected by these conditions at even a higher rate than the

general population . This disparity between adults with ID and the general population deserves more

attention and research. (Bodde, A. E., & Seo, D. C,2009).

Studying barriers is an essential precursor to the implementation of successful interventions

for people with ID. For adults, personal barriers include one's psychological, cognitive, and
emotional states and one's motivation and persistence to be active. Some studies have
demonstrated that personal barriers faced by people with ID are similar to those of the
general population such as age, lack of self-efficacy, lack of interest, and preference for
sedentary activities Other types of barriers include availability of resources, safety, or built
environment . These environmental and social barriers for people with ID may be lack of
transportation to an exercise facility, unavailability of staff for assistance, or unsafe areas or
streets in which to walk. In general, barriers fall into five categories: demographic/biological;
psychological, cognitive, and emotional factors; behavioral attributes/skills; social/cultural
factors; and physical environment factors .It is usually a combination of these personal,
social, and environmental . (Bodde, A. E., & Seo, D. C,2009).

While understanding the barriers is important for any population, the unique aspects of this
population warrant special study into their reasons for being inactive. For adults with ID, it is
important to focus on the most modifiable social and environmental determinants. Policy-
level changes in environmental and social barriers may affect a greater number of people than
individual-level . These types of barriers are especially pertinent to adults with ID because of
the great effect that others have in their lives. Those living in staffed group homes or
institutions often lack volitional control over many of their activity choices. Social support
has been found to be predictive in the general population , and it is probable that social
support is an equal or even more important independent predictor among adults with ID. In
addition to social determinants, addressing environmental and structural barriers are critical
as well. Adults with ID have “almost no control over their environment and few opportunities
to be physically active.” Even for people with ID who live independently, there may still be
concerns with transportation, finances, or safety . This may be due to the fact that choice
making is limited when one lacks these aforementioned resources. Because of the lack of
volitional control adults with ID often have over their surroundings, these environmental and
social barriers must be alleviated as much as possible before (or in conjunction with)
attempting to alleviate the personal barriers . Without first addressing modifiable
environmental and social barriers, tackling the personal, motivational, or cognitive-emotional
barriers would be futile.
The study people with ID has increased in the past decade, and many themes are beginning
to emerge that offer better understanding of these behaviors which can guide modifications
among direct service providing agencies. (Bodde, A. E., & Seo, D. C,2009).

Education is a basic human right that should be available to everyone, regardless of their
background . Accordingly, all persons are entitled to an education, regardless of gender, race,
ability status, or other sources of potential discrimination . The United Nations (UN) has been
promoting Millennium Development Goals (MDG) since 2014. One of these goals is to
champion access to free and compulsory primary education for all school-age children . .
(Bani Odeh, K., & Lach, L. M. 2024)

Children with disabilities (CWD) represent one of the most vulnerable groups in society in
terms of their access to education, degree of community support and awareness of their rights
, but the main challenge for CWD is their lack of access to educational rights . In most
countries there is considerable variance in the kinds of educational opportunities that are
available to disabled as compared to non-disabled children . Not surprisingly children in
LMICs have fewer educational opportunities because of significant socio-environmental
barriers ; and CWD in LMICs s are 90% more likely to lack access to educational
opportunities than CWD in developed countries . Further, CWD often live in fragile
situations and girls, in particular, are most at risk of losing out on education . Also, when
compared to children without disabilities, CWD face more challenges in completing all
educational levels . . (Bani Odeh, K., & Lach, L. M. 2024)

The general trend has been to move away from the policy of streaming CWD into long-term,
special education environments created to address their specific needs and, increasingly,
toward Inclusive Education (IE) environments in which CWD can be integrated with non-
disabled children . However, in order for CWD to fully participate in integrated contexts,
significant adjustments must be made in school-based beliefs, rules, and procedures.
Different initiatives have been taken that facilitate education for CWD, such as supportive
policies, staff training, physical infrastructure modifications, adapted assistive equipment,
and the provision of emotional and economic support for the parents of CWD .Although
international rights agencies typically champion both the principle of education for all and the
implementation of IE policies, there remains a considerable amount of ambiguity and
ambivalence regarding the translation of these policies into on-the-ground practices,
especially in countries where education is under-resourced. Further, CWD face educational
barriers as a result of difficulties associated with attempts to implement educational policies.
These barriers can occur in a variety of forms: physical, cultural, social, political (e.g., policy
formulation), and economic barriers. (Bani Odeh, K., & Lach, L. M. 2024)

Additionally, parents of CWD, encounter a wide range of challenges: financial constraints,

negative community attitudes toward raising CWD, and a general lack of community services
and policy support for the education of CWD . In short, given the combination of lack of
resources and negative attitudes, both the school environment and the community remain
unfriendly toward CWD . (Bani Odeh, K., & Lach, L. M. 2024)
To date, studies have identified individual barriers to, and facilitators of, education for CWD.
However, no systematic and comprehensive review exists that brings them all together so that
policy recommendations can be made that are based on this overall understanding. The
objective of this study is to conduct a comprehensive descriptive review that outlines the
barriers to and facilitators of education for children with disabilities aged between 6 and 18
years old, and to highlight trends and gaps that will inform policy and future research. (Bani
Odeh, K., & Lach, L. M. 2024)

In line with the Sustainable Development Goals (SDGs), it is important to consider how the
findings of our study align with Goal 4 of the SDGs, which aims to ensure inclusive and
equitable quality education and promote lifelong learning opportunities for all. Our study
contributes to this goal by identifying the facilitators that lead to success in educating CWD
and the barriers that hinder their education. By addressing these facilitators and barriers, our
study provides valuable insights into how to improve education for CWD in a way that aligns
with the broader global agenda of the SDGs. Additionally, conducting a descriptive scoping
review allows us to identify gaps in education and provide new information about facilitators
for CWD. It is important to note that our study is not limited to a specific type of disability or
educational approach, making it more applicable to a broader range of contexts. This
inclusivity allows our findings to be relevant and informative for various stakeholders
working toward achieving Goal 4 of the SDGs. (Bani Odeh, K., & Lach, L. M. 2024)

ATTITUDINAL BARRIERS:

Table 1
Figure 1

Over the last several decades, policy surrounding intellectual disability has reflected a
fundamental shift , resulting in a transformation of the developmental services landscape
from institutionalization to community-based recreation, employment, and living options .
This movement rests on the beliefs that smaller settings allow for more individualized
attention to client needs, that all individuals have a right to access their community, and that
inclusion results in greater visibility – and therefore acceptance – of individuals with
intellectual disability. Inclusion, in turn, is thought to enhance the quality of life of persons
with intellectual disability . It has been argued that an important determinant of the success of
community living efforts is the attitude of the public towards individuals with intellectual
disability and their presence and involvement in the community. Social distance is a construct
thought to reflect such attitudes and is defined as a ‘willingness to recognize, live near, or be
associated with a certain group or individual. The goals of the present study were to describe
the level of social distance which members of the public prefer to keep between themselves
and individuals with intellectual disability and to examine characteristics which may predict a
desire for greater or lesser distance. Moreover, given the long evolution of the measurement
of social distance, the current study endeavoured to examine its utility in reflecting
contemporary public attitudes. ( Ouellette‐Kuntz, H., Burge, P., Brown, H. K., & Arsenault,
E.2010)

While deinstitutionalization has resulted in the geographical shift of individuals with

intellectual disability into the general community, researchers and practitioners alike have
expressed concern that physical integration does not, in fact, guarantee true social inclusion .
The success of the inclusion movement rests on effective interaction between individuals
with and without disabilities as equals in all settings .Furthermore, the stigma and
discrimination commonly experienced by individuals with intellectual disability are not only
a barrier to effective integration but also result in reduced self-esteem and feelings of
isolation . ( Ouellette‐Kuntz, H., Burge, P., Brown, H. K., & Arsenault, E.2010)

Social distance is often used to describe attitudes towards stigmatized groups and was first
defined by Bogardus as the ‘degree of sympathetic understanding’ between individuals or
groups . It was developed out of an acknowledgement that physical proximity is inadequate
in measuring the closeness between people. For instance, although two neighbours may be
close geographically to one another, their social distance depends on the level of emotional
intimacy or social prejudice between them. Bogardus hypothesized that social distance is
composed of a horizontal dimension, which accounts for sympathetic understanding
occurring between peers, and a vertical dimension, which describes the sympathetic
understanding between individuals of unequal status. He contended that it is the prejudice and
discrimination occurring when a person’s social status is attacked or lowered that increases
the social distance between two people. ( Ouellette‐Kuntz, H., Burge, P., Brown, H. K., &
Arsenault, E.2010)

Therefore, the degree of horizontal closeness which a person feels with another is dependent
upon the vertical constraints of their relationship. Individuals are more comfortable with
others whom they perceive to be similar to themselves and therefore maintain a closer social
distance to them. In contrast, when a person perceives another’s behaviour to be unusual or
abnormal, he or she will likely feel the desire to place a social distance between himself or
herself and that person, resulting in aloofness or diffused fear. Social distance therefore
describes the relative willingness of an individual to take part in relationships of varying
degrees of intimacy with a person who has a stigmatized identity . ( Ouellette‐Kuntz, H.,
Burge, P., Brown, H. K., & Arsenault, E.2010)

Researchers have also recognized the applicability of the concept of social distance to
populations with intellectual disability. The often stigmatized identity of individuals with
intellectual disability offers the potential for members of the public to view them as
‘abnormal’ and to try to maintain a social distance from themAs policy and services within
the field of intellectual disability move towards a paradigm of inclusion, it is critical to
determine the consistency of the public’s attitudes with these efforts. More than ever, in an
age of deinstitutionalization and community inclusion, the concept of social distance is highly
relevant in describing the public’s attitudes towards individuals with intellectual disability
and in informing inclusion efforts. ( Ouellette‐Kuntz, H., Burge, P., Brown, H. K., &
Arsenault, E.2010)

COMMUNICATION BARRIER:
Communication skills are critical in order to learn, work, form relationships, and participate
in social communities . Communication serves many functions, including the sharing of
feelings and ideas, conveying information, the expression of identity, and facilitating social
closeness; it exploits multiple modalities including speech, manual sign, gesture, and facial
expression; and it engages both linguistic and non-linguistic forms. (Smith, M., Manduchi,
B., Burke, É., Carroll, R., McCallion, P., & McCarron, M. 2020)

The Communication Bill of Rights asserts that “all people with a disability of any extent or
severity have a basic right to affect, through communication, the conditions of their
existence”. Notwithstanding these rights, people with an intellectual disability (ID) are
vulnerable to communication impairments. As many as 45–90 % may experience a
communication difficulty, with those with severe ID being most at risk. The term Intellectual
Disability is all-encompassing. Gross estimates of the prevalence of communication
difficulties associated with ID can mask the variation in the groups that have been studied
and the aspects of communication explored .
Individuals with ID may experience difficulties in understanding spoken, signed, or written
language and/or in expressively conveying messages . They may struggle with the social
skills that underpin interactions (e.g., taking turns, staying on topic), and may have poor
speech intelligibility and fluency . (Smith, M., Manduchi, B., Burke, É., Carroll, R.,
McCallion, P., & McCarron, M. 2020)

Both individual and environmental factors influence the development and maintenance of
communication skills, as illustrated in the biopsychosocial model of the International
Classification of Functioning, Disability, and Health . Although each individual’s profile of
communication skills is unique, certain impairments are associated with particular patterns of
difficulties. For instance, people with Down Syndrome typically have poor speech
intelligibility, limited grammar complexity, and more difficulties in expressive than receptive
language . In people with Fragile X Syndrome, receptive and expressive language difficulties
usually co-occur with impaired pragmatic skills . (Smith, M., Manduchi, B., Burke, É.,
Carroll, R., McCallion, P., & McCarron, M. 2020)

Severity of ID is another important impairment factor . People with severe-profound ID

typically function mostly at a pre- or proto-symbolic level. They often develop limited speech
and language abilities and rely primarily on non-speech modalities, such as facial
expressions, movements, body posture or muscle Such communication forms are highly
individualized, and generally rely on familiar partners for interpretation. The environment,
and specifically communication partners within that environment, crucially influence the
modes of communication that are recognized, responded to, and interpreted, as well as the
perceived success of communicative interactions. (Smith, M., Manduchi, B., Burke, É.,
Carroll, R., McCallion, P., & McCarron, M. 2020)
The co-occurrence of challenging behaviours (an activity limitation within the ICF) may also
link to communication skills. The reported prevalence rates of challenging behaviours in
adults with ID range between 18.1 %–22.5 %, with a higher incidence in individuals with
profound ID . Challenging behaviours often serve a communication function, when other
forms are not available particularly in people with more severe communication difficulties .
Challenging behaviours may themselves affect the development of communication skills, and
the ability to build and maintain social networks . (Smith, M., Manduchi, B., Burke, É.,
Carroll, R., McCallion, P., & McCarron, M. 2020)

Finally, the relationship between speech intelligibility, language skills, and functional
communication ability is complex. Some individuals with profound speech impairments may
benefit from augmentative and alternative communication strategies and successfully
navigate many of their communication needs independently. Others with apparently
comparable levels of impairment may struggle to assert communicative autonomy.
Communication skills develop through interactions within sociocultural contexts. For this
reason, environmental factors are critical in their impact on communication, interaction, and
on opportunities for and barriers to, participation. Communication environments and social
networks are often restricted for people with ID, especially if they live in community and
residential care . Consequently, they can become socially, societally, and educationally
excluded . The impact of social participation and social interactions on communication
and quality of life of people with ID is well recognized and for this specific sample has been
detailed elsewhere . These complex layers of interacting factors reflect the dynamic inter-
relationships implicit in the ICF (WHO, 2001) and the inextricable relationship between
communication experiences and environmental factors. (Smith, M., Manduchi, B., Burke, É.,
Carroll, R., McCallion, P., & McCarron, M. 2020)

Current models of service provision for adults with ID emphasize the importance of social
engagement, and participation within local communities . In Ireland, services must support
individuals to participate in ordinary things in ordinary places . Such participation is critically
dependent on communication skills. Despite the volume of evidence within the
developmental literature, relatively little is documented about communication abilities of
adults with ID. In addition to challenges evident from childhood, additional factors may
emerge as part of the natural ageing process, and/or as a consequence of additional
cognitive, , sensory, and motor changes, and the impact of restricted social networks . (Smith,
M., Manduchi, B., Burke, É., Carroll, R., McCallion, P., & McCarron, M. 2020)

PHYSICAL BARRIERS:

Physical activity is important for people's health and well-being and this applies to people
with intellectual disabilities, for whom there is increasing concern about obesity and its
impact on health. Obesity prevalence is possibly 59% higher than in the general population,
and obesity-related health conditions, including increased cholesterol levels, type 2 diabetes,
cancers and cardiovascular disease, appear to develop earlier in people with intellectual
disabilities than in the general population, possibly due to higher obesity prevalence ,
increasing premature mortality . . (Cartwright, L., Reid, M., Hammersley, R., & Walley, R.
M. 2017)

Low levels of physical activity in people with intellectual disabilities appear to be an issue of
global concern, people with intellectual disabilities are ‘significantly more likely to lead
sedentary lifestyles , which may partially account for the high prevalence of obesity. In a
recent sample, most participants were overweight or obese and physical activity levels were
below national averages. A study of 68 adults with intellectual disability in Australia
‘indicated that the majority of participants (60.3%) did not meet national physical activity
guidelines’ .Low levels of physical activity in people with intellectual disability appear to be
common across the lifespan, and a study by notes that low levels of physical activity are
common in young adolescents and adults with intellectual disability, especially women.
Increasing activity levels amongst people with intellectual disabilities increases their physical
and cognitive capabilities, their well-being and their social engagement.Increasing levels of
moderate or vigorous physical activity among people with intellectual disabilities would be
the single most effective way of improving the health of people with intellectual disabilities. .
(Cartwright, L., Reid, M., Hammersley, R., & Walley, R. M. 2017)

Acceptance of inactivity tended to be expressed in terms of the assumed preferences of

others. Paid carers felt that service users and family carers preferred sedentary activities.
Service users and family members felt that paid carers were not always able to staff physical
activities adequately so cancelled them. In terms of prioritising physical activity, stakeholders
often justified their low priority in terms of having tried such activities and/or provided the
equipment and resources, but that this had not worked out due to resource limitations or
family preferences. However, shorter, more regular activities may be more beneficial than
longer, more elaborate ones . This may also help embed sustainable change into everyday
life. Preferences and priorities did not appear to be commonly discussed, despite the
acknowledged importance of physical activity for health. This communication gap included
role ambiguity between family and paid carers, with both groups believing that the other
group should have primary responsibility for increasing service users’ activity levels. Unclear
policy guidelines may contribute to this barrier and clear direction from project leaders may
support improvements in this aspect of service provision. . (Cartwright, L., Reid, M.,
Hammersley, R., & Walley, R. M. 2017)

The main way of achieving more physical activity was thought to be specific activities that
should be ‘added on’ to everyday life , such as swimming, horse riding or using a treadmill.
These assumptions are no different from normative assumptions made by the general
population. Current advice is that weight management is best achieved with a sustained
programme of lifestyle change . For service users, this would involve centring physical
activity in their lives, rather than adding it on. This would require communicating about
actual preferences, as well as safety and resource issues. Many homes contain unused
exercise equipment because it does not suit the activity needs of the occupants. Many people
struggle to incorporate exercise into their weekly routines. So the relative inactivity of service
users does not necessarily suggest a preference for sedentary activities but rather a lack of
feasible physical activities. . (Cartwright, L., Reid, M., Hammersley, R., & Walley, R. M.
2017)
Family carers were predominantly older adults caring for their adult offspring, so they did not
feel able to take the lead on promoting physical activity in the family. Nor did it help that the
service users were obese, for obesity limits people's physical abilities . The view of physical
activity as a special task that required special arrangements mirrors other findings that
participants considered a healthy diet to involve going on a diet which necessitated eating
special foods and avoiding other foods .The similarity lies in thinking about health as
involving additional activities that can be resource intensive and less intrinsically desirable
than normal activities, rather than being integral to everyday life and beneficial for everyday
well-being. Instead of accepting this situation, professional carers need to take up the
responsibility for increasing service users’ physical activity levels. . (Cartwright, L., Reid,
M., Hammersley, R., & Walley, R. M. 2017)

Conceptualising physical activity as an add-on unwittingly raised barriers because special

activities, especially outside the day centre, can be resource intensive and logistically
complex. There needs to be creativity and ingenuity in developing ways of increasing
physical activity within the normal routines of day care. . (Cartwright, L., Reid, M.,
Hammersley, R., & Walley, R. M. 2017)

Ideally, day centres need to develop policies to increase activity levels, by integrating
sociable physical activities into everyday routines, by explicitly rejecting the acceptance and
facilitation of inactivity and by being willing to show service users how to do activities. For
example, electronic games consoles include many games that involve physical activity and
are sociable. Such activities can be less staff intensive, can occur within the normal routine of
the day centre, are an alternative form of social interaction to the ‘groups’ that the paid carers
described as consisted of cooking based activity and can be incorporated into annual plans.
Social activity has been found to be ‘an important predictor of BMI scores in people with
intellectual disability’ . Including physical activity that has a social aspect could help address
the problem of modelling the behaviours and attitudes of family carers described earlier in
this article. (Cartwright, L., Reid, M., Hammersley, R., & Walley, R. M. 2017)

Various international treaties and policies pertain to physical activity. For example, the UN
Convention on the Rights of the Child supports children's rights to participate fully in sport
and other types of physical activity by advocating for non-discrimination and for a
commitment to the child's best interests and development. The UN Convention on the Rights
of Persons with Disabilities explicitly recognises the importance of physical activity by
stating that PWIDD have the basic human right to participate on an equal basis with others in
recreational, leisure, and sporting activities. (Ginis, K. A. M., van der Ploeg, H. P., Foster, C.,
Lai, B., McBride, C. B., Ng, K., ... & Heath, G. W. 2021)

Participation in disability sport (also known as adapted sport or parasport) is growing

internationally , but remains far higher in high-income countries than in low-income and
middle-income countries . This growth is largely driven by governmental and non-
governmental organisations that frame disability sport as a means to address the lived
experiences of social inequity faced by people living with disabilities (PLWD). International
disability sport events such as the Paralympics, the Deaflympics, and the Special Olympics
include, in their mission statements, the use of disability sport events to promote the
empowerment, social inclusion, and social participation of PWIDD. Likewise, the
UN, WHO, UNICEF, and UN Educational, Scientific and Cultural Organization (UNESCO)
identify disability sport events and sport programmes as agents of social change to address
social inequities, but whether they are effective is unclear. Regarding empowerment, negative
stereotypes about disability can be mitigated when PWIDD are characterised as sport
participants, even outside the context of a sport event. However, the media's framing of
disability sport narratives is frequently criticised for perpetuating disability stereotypes: for
instance, by portraying athletes with disabilities as superhuman, or disability as a tragedy that
must be overcome. Regarding inclusion, investments in major sporting events often improve
the physical and social accessibility of physical activity facilities and venues to PWIDD. Yet,
unfortunately, these benefits are poorly distributed and do little to address the long-term
systemic barriers faced by PWIDD, particularly among non-host LMICs, which are often the
focus of international physical activity policy goals. Regarding participation, although the
London 2012 Paralympic Games were considered successful in terms of media coverage and
increased post-Games disability sport participation , participation in sports started to decline
in 2017. Together, these equivocal findings attest to the need for greater critical consideration
of how disability sport can achieve a legacy of empowerment, social inclusion, and social
participation for PWIDD. (Ginis, K. A. M., van der Ploeg, H. P., Foster, C., Lai, B., McBride,
C. B., Ng, K., ... & Heath, G. W. 2021)

Another example of international policy is WHO's Global Action Plan on Physical Activity
2018–30 (GAPPA). With its emphasis on equity across the life course, GAPPA recognises
that disparities in physical activity participation by PLWD are not because PLWD have a
medical problem, but are consistent with social and social-relational models of
disability, disparities that reflect limitations and inequities in socioeconomic determinants
and opportunities for physical activity. Thus, one target of GAPPA is to ensure equal
opportunities and reduce inequalities in physical activity participation by empowering the
social, economic, and political inclusion of everyone. Another target is to eliminate
discriminatory laws, policies, and practices, and promote appropriate legislation and action.
Reflecting GAPPA's call for equity across the life course, physical activity policy
development for PWIDD can be found in some national, government-endorsed physical
activity guidelines and in WHO's 2020 physical activity guidelines. Historically, national and
international physical activity guidelines mostly ignored PWIDD. (Ginis, K. A. M., van der
Ploeg, H. P., Foster, C., Lai, B., McBride, C. B., Ng, K., ... & Heath, G. W. 2021)

Physical activity policies, recommendations, and resources must incorporate the values,
needs, and preferences of PWIDD, relevant rights holders, and stakeholders. Scientists and
policy makers must abide by the philosophy of nothing about us without us to co-produce
research, recommendations, policy, and other knowledge products . (Ginis, K. A. M., van der
Ploeg, H. P., Foster, C., Lai, B., McBride, C. B., Ng, K., ... & Heath, G. W. 2021)

Physical activity policy makers must ensure that the Convention on the Rights of Persons
with Disabilities basic right to full and effective participation is upheld. Creating policies and
programmes that increase the numbers of PWIDD participating in (or their time spent in)
physical activity is not enough. Full and effective physical activity participation means
having high-quality physical activity experiences that satisfy the individual's values and
needs for belonging, autonomy, challenge, mastery, engagement, and meaning in the context
of physical activity. Research and resources co-produced by PWIDD, scientists, health-care
and social workers, and other stakeholders are needed, along with policies to foster optimal
quality participation by PWIDD in physical activity contexts. (Ginis, K. A. M., van der
Ploeg, H. P., Foster, C., Lai, B., McBride, C. B., Ng, K., ... & Heath, G. W. 2021)

SOCIAL BARRIERS:

One of the important purposes of equal rights legislation is to codify the right to equal and
active participation in society for people with disabilities. Accommodating the needs of a
person with a disability enables her/him to live with maximum independence, privacy, and
dignity. Thus, most such laws include sections that emphasize accessibility as a significant
enabler of participation. (Yalon-Chamovitz, S. 2009).
Accessibility describes the degree to which a system, facility, or service is usable without
modification by as many people as possible (Australian Government Information
Management Office [AGIMO], 2008). It refers to one's ability to reach a place, move and
navigate in it, use and enjoy a service, receive information, and take part in programs and
activities, all in an equal, respectable, independent, and safe manner (Americans With
Disabilities Act [ADA], 1990; Israeli Equal Rights for Persons With Disabilities Law —
Accessibility Amendment, 2005). (Yalon-Chamovitz, S. 2009).

A systematic review of IDD prevalence noted that three of eight studies reported statistically
significant differences by race and/or ethnicity, with a lower prevalence of IDD for White
children as compared to Black children; conversely, the prevalence of ASD, a developmental
disorder and therefore subtype of IDDs, was found to increase with socioeconomic status
among White, Black, and Hispanic children in a population study using US census data .
(Shady, K., Phillips, S., & Newman, S. 2024)

Communication difficulties (CD) are prevalent among individuals with IDD; an estimated
57.9% of those with intellectual disabilities (ID) and 40% of those with ASD struggle with
communication.These difficulties involve challenges in sending, receiving, processing, and/or
comprehending abstract ideas, verbal and nonverbal communication, and/or graphic symbol
systems and range from mild to profoundly severe. CDs are a significant barrier to healthcare
for all patient populations, with ineffective communication acting as a barrier to care for
individuals with IDDs . Additional barriers to care include lack of provider education
regarding the care needs of the adult IDD and CD population, and disparities in social
determinants of health including stigma and discrimination, e.g. “ableism”. (Shady, K.,
Phillips, S., & Newman, S. 2024)

Individuals with IDDs use preventive care less frequently and report higher rates of unmet
healthcare needs and increased use of emergency departments (ED) compared to neurotypical
individuals. Disparities in healthcare access contribute to shorter life spans in adults with
IDDs (compared to adults without IDDs) due in part to their significantly higher rates of
comorbidities, including sleep problems, diabetes, obesity, seizures, problems of the
gastrointestinal, autonomic, nervous, immune, metabolic, and respiratory systems, skin
conditions, and food allergies. These complex health issues lead to increased healthcare
utilization needs. As a result, adults with IDD are estimated to have four times higher annual
healthcare costs than individuals without IDD . (Shady, K., Phillips, S., & Newman, S. 2024)
The relationship between healthcare access and factors affecting and associated with adults
with IDD and their often inherent CDs warrants further investigation. Accordingly, the
purpose of this integrative review is to analyze and synthesize current knowledge about the
barriers to and facilitators of access to care in adults with IDDs/CDs through the lens of
Levesque et al.’s conceptual framework of access to healthcare .The findings of this review
may inform further research and the development of interventions that alleviate barriers
and/or leverage facilitators to access to care. (Shady, K., Phillips, S., & Newman, S. 2024)
TRANSPORTATIONAL BARRIERS:
The primary role of a transportation system is to provide people with access to places, people,
and services. This access is crucial to participate in society, to exchange information, goods,
and services, and therefore to accrue or maintain social, economic, and cultural capital . For
this reason, many have argued that transport accessibility is central to mobility justice, and
more broadly social justice. Though accessibility has been a central concept in transportation
planning and mobility justice, the concept is theorised and measured in a myriad of ways .For
instance, accessibility can be conceptualized in terms of individual accessibility, the
economic benefits of accessibility, or, most commonly, location accessibility. Location-based
accessibility, defined as the level of access to spatially distributed locations, resources, or
activities. (Ravensbergen, L., Newbold, K. B., Ganann, R., & Sinding, C.2021)

The UN Convention on the Rights of Persons with Disability (PWD) has been signed by over
160 nations to achieve greater social participation, with public and private transport clearly
identified as an area to improve accessibility. Whilst the majority of scholarly work has
focused on public transport needs, less research has examined the barriers or benefits of
access to private modified vehicles for PWD. In this exploratory study, a Delphi technique
with health experts, researchers, drivers and funding agencies developed an instrument to
examine the barriers of access to private modified vehicles for PWD. An online survey was
completed by 287 drivers and carers to report on barriers to private modified vehicles, whilst
a sub-set of 190 drivers with access to a private modified vehicle reported on experientially
derived benefits. A factor analytic approach identified how financial and informational
barriers vary with respect to several characteristics including disability type and level of
support needs. Factors relating to independence, social and recreational benefits are perceived
as more valued experientially derived benefits relative to benefits relating to employability
and ability to enjoy downtime. Benefits in the form of independence are greater among
drivers and owners, those with an acquired condition, less complex mobility and everyday
support needs, whilst little difference emerged in terms of the social and downtime benefits.
The findings inform policy development and funding opportunities to provide insight and
evidence into the barriers, but also benefits and variation in private transport needs among
people with disability (PWD) have significantly lower mobility and transport opportunities
available to access spaces and places as compared to the general population .The specifics
and impact of difficulties in transport among various disadvantaged groups has been
described as “transport disadvantage” . (Darcy, S., & Burke, P. F. 2018).
The issue speaks to the rights of individuals for equal access to transportation as part of
foundational requirements for social participation and citizenship. Most research on transport
disadvantage among PWD has focused on issues relating to the accessibility and experiences
of using public transport .These difficulties are associated with physical accessibility,
malfunctioning equipment (e.g. lifts to platforms), lack of audible signalling and changed or
cancelled services .This situation can be further compounded for PWD residing in outer-
urban, rural, and remote areas with poor or non-existent accessible public transport
infrastructure, the need to travel further distances to access employment, services and to
participate in activities. Many PWD have sought alternative options, including paratransit
systems, which are point-to-point systems provided free or subsidised by government to
assist PWD. While less flexible than private modified vehicle (PMV) use, such systems offer
independence for PWD to travel to places of their choosing, thereby successfully facilitating
social participation to employment, health, voluntary, education, social and community
engagement activities .However, there have been multiple problems with these systems
depending on the geographic location, governance, delays, effectiveness, efficiency and costs
to individuals and to government .For some PWD, public and para transport options are not
available, with Rosenbloom (2007) suggesting that this is the case for one-third of
Americans. A 2002 study by the U.S. Bureau of Transportation Statistics (BTS) found that
that less than one in five used public transport whilst less than 10 per cent had engaged
specialised and ADA paratransit modes. On the other hand, 78% of PWD aged 25–64 had
used a private vehicle with 69% doing so as drivers. The dependence on cars among older
persons was found to be even higher .It is important to understand the barriers to
transportation, but also account for differences in how such outcomes are realised at different
levels across the population of PWD. Identifying potentially marginalised groups and
highlighting which PWD groups can benefit most and on which dimensions informs the
design of policies that support the utilisation of transport with respect to various factors such
as disability type and level of support. (Darcy, S., & Burke, P. F. 2018).
research in transportation on private transport options using automobiles for PWD has
received less attention relative to issues of transport disadvantage in public transport and
alternatives such as paratransit options. This is surprising given the considerable
opportunities that exist for PWD given the right support, assistive technology and
engineering modifications to motor vehicles. In contrast, the medical and allied health
research literature explores at length the assessment and interventions for assisting people
with impairments to drive .Not surprisingly, both areas of study of PWD consistently
highlight costs as a barrier to PMV. However, not all PWD are transport disadvantaged to
PMVs, with the variation in costs affected by a person’s disability type and their level of
support needs .For example, vision impaired requires no modifications to PMVs whereas
wheelchair users require significant modification for independent access. Few production
vehicles are made for people with mobility disability. Instead, standard production vehicles
must be specially modified to cater for drivers and passengers with disability. Modifications
can range from simple additions (e.g., steering wheel spinner knob) to more complex
modifications to the vehicle body structure, such as extending a vehicle’s length or altering
its roof line. (Darcy, S., & Burke, P. F. 2018).
In general, government approaches to PMV ownership have been ad hoc at best with few
countries offering schemes to redress the inequity of PMV ownership for PWD including
UK, Germany and Australia. Most schemes offering assistance to PWD to drive or gain
access to a modified vehicle are only available to those who were eligible for compensation
via workplace or motor vehicle accident. Government programs vary by country (the vast
majority having no assistance programs), whilst approaches to modification approval,
assistance, assessment and licensing of drivers with disability further vary by jurisdiction or
by regional government. These resources are both information and assessment based and
complement an eligible person’s access to financial resources. In other schemes, access is
dependent on the individual being employed. The neoliberal agenda of employment and
citizenship being closely aligned flows through to PMVs, whereas access to automobility for
PWD without employment can increase employment prospects by extending their
opportunities for social participation. These opportunities include volunteering where PWD
are exposed to human capital development that are critical to, and transferable, to
employment . (Darcy, S., & Burke, P. F. 2018).
For those without a motor vehicle license living in a car culture, such as the US, Australia
and Canada, significant social disadvantages occur .Critiques of automobility identify that
whilst PWD are able to access the benefits of automobility (e.g., mobility, status,
independence, employment and pleasure), society accrues the costs (e.g. negative
externalities of pollution, crowding etc.) and how through new notions of transport
sustainability there is an increased emphasis on social sustainability . Consideration of
transport disadvantage, however, must move beyond a simplistic understanding that it affects
PWD stemming from being “unable to drive”. Study of opportunities for PWD must
recognise the social structure to which they are embedded. For example, PWD are presented
many opportunities by the household or family to which they belong. As such, studying
barriers and benefits of private transport must recognise that where PWD are unable to drive
there is an increased role of household members in transporting individuals with disability
that creates a dependency and extra hidden cost of disability to the household through either
lost to the cost (lost paid employment through a voluntary transporting of PWD) and lost
independence of PWD that affects social participation .In conceptualising transport
disadvantage, identifies that there are three major considerations: urban form; transport
options; and, types of people. As such, it is important to consider that the travel chain is made
up of all elements of a journey including pedestrian access, the vehicles themselves and
transfer points, and if any link is inaccessible the entire trip becomes difficult . These
elements of the urban environment further create barriers for all transport options, including
those using PMVs. The personal mobility of the individual, their access to or limitations with
assistive technology may further affect their local mobility. This may occur through: lack of
curb cuts, continuous part of travel, ramps, lifts, tactile ground surface indicators, clear
signage, the type surface, the gradient, cross camber, inclement weather, parking, accessible
toilets and a myriad of other access considerations . (Darcy, S., & Burke, P. F. 2018).
Social exclusion from transport can be discussed in terms of the social and human capital an
individual is able to develop to challenge their disadvantage or if unable to challenge their
disadvantage how it perpetuates the inequality and discrimination that they face. PWD are
socially excluded beyond just social participation to those areas that manifestly develop in
social capital through bridging (current relationships) and networking (beyond their current
social circles) that provide opportunities for volunteering and employment. To date, the few
that consider PWD in terms of PMV suggest a range of barriers, but also benefits that can be
realised, but these may vary across different groups. However, implicit to social capital is an
understanding of the social constructionism and the social ecological model that categorises
the dimension of barriers/benefits across the following levels: individual; interpersonal;
organisational; community; and the socio political. (Darcy, S., & Burke, P. F. 2018).
Transport disadvantage and transport poverty resulting from disadvantage are serious social
issues for PWD, reflected in the UN Convention on the Rights of Persons with Disabilities
that specifically identifies access to public and private transport as essential for disability
citizenship. Yet, for PWD who require the use of PMVs, their transport disadvantage and
poverty is compounded by the significant barriers to ownership. This study has found that
across all groups financial barriers were the most significant of the barriers. Whilst varying in
its impact across groups of PWD, access to information about the supply chain of the private
vehicle modification market and services created further barriers to ownership. While policy
in neoliberal states is focused on benefits of access to PMV in terms of employment, this
study has determined PWD valued the social and recreational benefits, and the independence
auto mobility creates above the instrumentality of employment. Quite simply, automobility
gives back what many PWD have lost: an active life that is independent and socially fulfilling
(Darcy, S., & Burke, P. F. 2018).

COORDINATION AND CONTINUITY OF CARE:

People with IDD can have complex and diverse health and communication needs. In the
updated 2018 Canadian consensus guidelines, guidelines 1 and 2 recommend attention to
communicating with adults with IDD, collaborating with caregivers and others, and
coordinating health care interventions. This call for reasonable adjustments in the primary
care of people with IDD is consistent with the Convention on the Rights of Persons with
Disabilities, which Canada has ratified. (McNeil, K., Gemmill, M., Abells, D., Sacks, S.,
Broda, T., Morris, C. R., & Forster-Gibson, C. 2018).

In a confidential inquiry into premature deaths of people with learning disability in the United
Kingdom, 42% of deaths among people with IDD were premature and avoidable. Factors
contributing to premature death included the following: family and caregivers feeling “not
listened to,” problems recognizing the needs of people with IDD and not adjusting care
appropriately, and problems with coordinating health care, sharing information, and keeping
and being able to access records readily. In other words, premature deaths among people with
IDD were owing to problems with health information exchange (HIE).
Health information exchange is the process of sharing or transferring verbal or written
personalized health information. It is an essential element of the relationships between the
patient and his or her family physician and the patient’s caregivers and family physician.
Health information exchange is also an important component of the Patient’s Medical Home
(PMH), which is a framework for understanding and practising coordinated and
comprehensive primary care(McNeil, K., Gemmill, M., Abells, D., Sacks, S., Broda, T.,
Morris, C. R., & Forster-Gibson, C. 2018).

The family physician as communicator: Communication is a fundamental skill for Canadian

family physicians. Studies show that family physicians feel that they are competent in
communicating with patients with mild and moderate IDD. When studies compared family
physicians’ skills with the skills that people with IDD value in their physicians, there was
agreement on most of these skills. What did not match, however, was the difference in
expectations of family physicians and patients with IDD regarding the time needed for the
clinical encounter, the need for an explanation of the physical examination, and
communication among the physician, patient, and caregiver (triadic communication). Patients
believed the key strengths of their family physicians were their ability to listen, their
willingness to support various communication strategies, and their assistance in navigating
the health care system. Other patients with IDD, however, thought that they were rushed and
not listened to, stating, “Doctors are over worked and over stretched.”
Communicating with people with IDD and practical tips for the family physician: People
with IDD communicate in many ways: verbal, symbolic (signs, pictures, picture exchange
communication systems), and pre-symbolic (gestures, facial expression, body language).
Those who have verbal skills might have better expressive than receptive language,
displaying extensive vocabulary and using words in the right context. However, these phrases
might have been memorized from past experiences and might not be fully understood. It is
vital, as with all patients, to verify comprehension by asking them what they understand and
providing written instruction to avoid dangerous misunderstandings. (McNeil, K., Gemmill,
M., Abells, D., Sacks, S., Broda, T., Morris, C. R., & Forster-Gibson, C. 2018).

In order to optimize communication, family physicians should look directly at their patients,
speak slowly and clearly, avoid jargon, and consider using pictures and drawings. The level
of IDD, certain medications, motor skills, and anxiety can all affect communication skills.
With this in mind, it is important for family physicians to provide information in the form
that the patient is most likely to understand, and to provide it at the time when they are most
likely to understand it.
When family physicians attempt to communicate with people with IDD who communicate
pre-symbolically, like Thelma, they need to go beyond typical patient-centred competencies
of rapport building. They should align themselves emotionally and behaviourally with such
patients in order to understand the subtleties of their communication, which involves a
process called attuning. How well people attune to one another is manifested in the degree to
which they empathize and cooperate with each other. Various techniques can be used to
develop one’s attuning skills. One example is to “recognize the individual,” which means
being able to see the person as likable and self-determined, and to connect with them through
building trust and respect while sharing moments of humour and fun. It is important for
family physicians to remember that attempts at communication are expressions of our
patients’ autonomy, and their behaviour is purposeful communication. When interpreted
correctly, such behaviour can be an opportunity to understand and acknowledge the self-
determination of the other.
Tips for triadic communication: Much of physicians’ communication with patients with IDD
is triadic. When participating in a 3-way conversation, it is important for the family physician
to have an approach that can be tailored to the patient’s needs(McNeil, K., Gemmill, M.,
Abells, D., Sacks, S., Broda, T., Morris, C. R., & Forster-Gibson, C. 2018).

Collaboration and triadic communication: In triadic communications, the patient is the

focus and the triad forms the base of the collaborative network (the PMH). Good triadic
exchange is strongly linked to matters of autonomy and the self-determination of the person
with IDD. This approach can be time-consuming, especially for the solo family physician, as
it requires conscious attention to how the patient and the practitioner themselves are
communicating. The benefit to this time investment is improved health care for the person
with IDD—a downstream improvement in collaboration and coordination Triadic
communication is essential to gathering health care data, informing decision making, and
constructing and executing a patient’s care plan; it is the foundation of HIE and depends on
the availability of caregivers, who act as sources, interpreters, and record keepers of the
patient’s health information. When triadic communication breaks down, patient-centred care
is affected, advocacy is hindered, and gaps occur in the care plan, all of which put the
patient’s health at risk. Physicians feel that optimal health care delivery for people with IDD
requires consistent caregivers who have the capacity, interest, and motivation to be part of the
health assessment process; caregivers think improvements could be seen if family physicians
were willing to provide support outside of the office consultation, for example by being
available by telephone to speak to group home supervisors or family members for collateral
history. Family physicians and caregivers alike could benefit from more training in the area
of triadic communication. Also, assigning tasks to both the family physician and caregiver
before, during, and after the consultation might improve the collaborative process. (McNeil,
K., Gemmill, M., Abells, D., Sacks, S., Broda, T., Morris, C. R., & Forster-Gibson, C. 2018).

Collaboration within the PMH: The concept of the PMH, endorsed by the College of Family
Physicians of Canada, provides a useful model for augmenting collaboration in primary care
for people with IDD. The College’s recommendation for the PMH is that it is patient-centred
and individualized, in keeping with community-based resources. Based on the individual’s
needs, team members might include physicians, nurses, clergy, physiotherapists, occupational
therapists, social workers, friends, speech-language pathologists, administrative assistants,
behavioural therapists, teachers, medical specialists, and neighbours. Another aspect of the
PMH is that it allows for unique approaches to accommodating a specific patient’s needs.
These adaptations could include modifying the clinic so that patients with IDD are able to
bypass busy waiting rooms, having wheelchair-accessible clinics and examination tables,
and, in some cases, offering home visits. (McNeil, K., Gemmill, M., Abells, D., Sacks, S.,
Broda, T., Morris, C. R., & Forster-Gibson, C. 2018).

Coordination strategies for the family physician.

Coordination unifies communication and collaboration, and the family physician plays an
integral role in this capacity. There are several ways in which a family physician might take
on the role of coordinator in providing care for a patient with IDD: coordinating information,
medical procedures, and the care team. (McNeil, K., Gemmill, M., Abells, D., Sacks, S.,
Broda, T., Morris, C. R., & Forster-Gibson, C. 2018).

Coordinating information: Effective HIE is beneficial for the care of patients with IDD. One
specific example is the use of hand-held health records—medical summaries that patients
carry with them. These tools lead to more discussion about health problems, increase health-
related knowledge, and increase awareness of personal health issues for people with
IDD. Further, when health actions were recorded in a hand-held health record, there was
improved health care of people with IDD in the short term. (McNeil, K., Gemmill, M.,
Abells, D., Sacks, S., Broda, T., Morris, C. R., & Forster-Gibson, C. 2018).

It is not enough, however, for people with IDD to have health assessments and hand-held
records of medical history; there must also be an action plan that travels with the
patient. Several recommendations have been made regarding coordination of health care for
people with IDD, including assigning a health care coordinator for people with complex
health needs, and providing hand-held health records to these patients. (McNeil, K., Gemmill,
M., Abells, D., Sacks, S., Broda, T., Morris, C. R., & Forster-Gibson, C. 2018).

Coordinating medical procedures: As health advocates, family physicians coordinate

medical investigations and procedures for their patients. As in Hilary’s case, procedures such
as imaging tests and phlebotomy can be difficult for people with IDD owing to fear, lack of
understanding, and communication barriers. A specific example of a family physician
advocating for their patients who are unable to tolerate having their blood drawn would be to
coordinate phlebotomy to occur while the patient is under general anaesthetic for another
medical procedure. In Hilary’s case, her ICU team coordinated her medical procedures to
occur when family and favourite, comforting items were close by. These simple acts of
coordination facilitated the successful completion of Hilary’s medical procedures with
reduced distress. (McNeil, K., Gemmill, M., Abells, D., Sacks, S., Broda, T., Morris, C. R., &
Forster-Gibson, C. 2018).

Coordinating the health care team: The PMH will vary in its composition depending on the
needs of the patient, resources available, and geographic location. The PMH is a virtual hub
from which a family physician, health care provider, or family takes responsibility for
coordinating medical services that might or might not be taking place in a traditional
collaborative setting. Often, it is assumed that the family physician will take on the
responsibility of being the gatekeeper and coordinator of the medical information; however,
the members of the PMH might agree to designate another team member to lead, such as a
social worker, the parent, or the group home supervisor. Health care teams should discuss and
decide who should take on this responsibility. This can be helpful for a family physician
working in a solo practice. It allows him or her to delegate collaboration and coordination to
other team members while remaining a key collaborator and modeling strong communication
skills to members of the PMH to ensure safe, high-quality patient care. (McNeil, K.,
Gemmill, M., Abells, D., Sacks, S., Broda, T., Morris, C. R., & Forster-Gibson, C. 2018).

Having the family physician participate in periodic team meetings can facilitate collaboration
and communication with patients and their families when implementing care plans. In one
example, having access to a behavioural therapist to negotiate a care plan with the patient and
the team resulted in reduced use of psychotropic medications. We acknowledge
interprofessional teams are not available to all Canadian family physicians, and there is a dire
need for access to skilled mental health services and behavioural therapy for patients with
IDD. More research is needed in this area to find innovative, efficient, and fiscally
responsible ways to use scarce mental health and behavioural resources that will serve all
Canadians with IDD who need such resources. Patient- and family-centred care of people
with IDD involves many individuals and requires a concerted effort to communicate,
collaborate, and coordinate health care information. Family physicians are strategically
positioned to assume these tasks or initiate a discussion within the health care team regarding
who on the team is best suited to take on this responsibility in view of the person with IDD’s
specific needs. Individualized adaptations for people with IDD can ensure a smooth flow of
information and promote optimal outcomes for this vulnerable population. (McNeil, K.,
Gemmill, M., Abells, D., Sacks, S., Broda, T., Morris, C. R., & Forster-Gibson, C. 2018).

LACK OF AWARENESS AND UNDERSTANDING:

The general public's responses to people with intellectual disabilities influence the likely
success or failure of policies aimed at increasing their social inclusion. The present paper
provides a review of general population based research into awareness, attitudes and beliefs
regarding intellectual disability published in English between 1990 and mid-2011. An
electronic search using Web of Science plus a hand search of the literature was completed.
Most of the 75 studies identified consisted of descriptive surveys of attitudes. They tend to
conclude that age, educational attainment and prior contact with someone with an intellectual
disability predict attitudes, while the effect of gender is inconsistent. Eight studies examined
lay knowledge about intellectual disability and beliefs about its causation in a range of
cultural contexts. The impact of interventions designed to improve attitudes or awareness was
examined by 12 studies. The evidence is limited by the fact that it is mostly based on
relatively small unrepresentative samples and cross-sectional designs. It is concluded that
overall, high quality research into general population attitudes to intellectual disability is
limited. Public knowledge of intellectual disability and causal beliefs are particularly under-
researched areas. There is a notable absence of well designed evaluations of efforts to reduce
misconceptions about intellectual disability and tackle negative attitudes. Areas for future
research are noted, including the need for well designed studies that consider awareness,
attitudes and beliefs in relation to stigma theory. (Scior, K. 2011)

Current policies governing services for people with intellectual disabilities in Western
countries aim to maximise their social inclusion, independence and empowerment. Around
the globe policies and services for this population are being put in place to assert their rights
and tackle barriers to their inclusion . However, where lack of awareness, negative
community attitudes and stigmatising beliefs prevail, attempts at greater community
integration may well be met with resistance. Thus, understanding public responses to
intellectual disability has important implications for the likely success of inclusion policies. A
recent large scale survey in concluded that lay people’s understanding of intellectual
disability is still limited. This is of concern as lack of awareness about individuals with
intellectual disabilities has been linked to negative attitudes and to stigmatising beliefs more
prevalent in some cultures, such as that intellectual disability is due to possession by spirits or
punishment for past sins. To date though, concerns about stigma associated with intellectual
disability are largely derived from research with the families of individuals with intellectual
disabilities, not from general population based research. While there are some suggestions
that attitudes have become more positive over time, bullying is consistently a major concern
noted by both children and adults with intellectual disabilities and disability hate crime has
been recognised in some countries as a matter of serious concern. This raises the question, to
what extent discriminatory attitudes and behaviour arise from general low levels of awareness
and more widely held negative attitudes, or rather from extreme prejudices held by a small
minority. While public awareness, beliefs about causes and their effect on stigma have been
the subject of intense enquiry in the mental health, it is unclear to what extent these factors
have been studied at adult general population level in relation to intellectual disability. While
the literature on children’s attitudes towards peers with intellectual disabilities has been the
focus of reviews, no systematic review of knowledge, attitudes and beliefs in the general
adult population is currently available. For these reasons a systematic review of the literature
on public awareness, attitudes and beliefs regarding intellectual disability seems timely.
(Scior, K. 2011)

Despite policies aimed at ensuring equal rights and maximising respect and
social inclusion for people with intellectual disabilities, in their daily lives many
continue to face negative attitudes and discrimination within society.
Misconceptions about what it means to have an intellectual disability and about
the capabilities of people with intellectual disabilities appear widespread, and
may contribute to prejudice and discrimination. This review provides a
summary and evaluation of empirical interventions aimed at increasing
knowledge and targeting negative attitudes towards this population among lay
people of working age. An electronic search using PsycINFO, Web of Science
and PubMed identified 22 English language studies published between 1990
and early 2014 that reported a specific intervention with a lay population
sample. The majority of studies reported promising outcomes, particularly those
aimed at increasing knowledge of intellectual disability through education.
Support for the positive influence of contact with people with intellectual
disabilities was demonstrated across several interventions. Interventions
delivered at least partly by individuals with intellectual disabilities, and
educational interventions appear to hold the most promise. The evidence is
limited though by the weaknesses of measurement tools employed. (Seewooruttun,
L., & Scior, K.2014).
Evidence on public attitudes and knowledge regarding intellectual disability is more
voluminous, yet paints a varied picture. Recent large scale attitude surveys in the UK and
Canada suggest that lay people are generally in favour of inclusion, which may show
promising evidence for the efforts of disability activists and policy makers. However,
evidence abounds that pejorative attitudes and discrimination towards people with
intellectual disabilities are still widespread. They consistently emerge as one of the least
desirable groups to socially interact with and are at increased risk of targeted violence,
physical assault and anti-social behaviours, compared to those affected by other forms of
disability. Discrimination in the form of reduced employment opportunities, poorer access to
education, housing and good quality healthcare are common experiences among people with
intellectual disabilities. Much of the research has provided descriptive accounts of attitudes
and has relied heavily on the use of self-report attitudinal measures. Despite the limitations of
such measures, there appears a clear need for initiatives aimed at tackling negative and
prejudicial attitudes towards people with intellectual disabilities if they are to live safe,
inclusive and empowered lives. (Seewooruttun, L., & Scior, K.2014).

Public attitudes towards persons with intellectual disabilities (IDs) have a

significant effect on potential community integration. A better
understanding of these can help target service provision and public
awareness programmes. Social inclusion, community participation and
empowerment of persons with disabilities are central concepts now
guiding policies, legislation and services for persons with intellectual
disabilities (IDs) around the world .These changes and other practice
changes, such as deinstitutionalisation, are compelling the society at large
to reconsider its attitudes towards persons with ID. Public attitudes affect
quality of community integration, daily living and social participation of
individuals with disabilities. Thus, understanding these attitudes can lead
to the identification of factors that impede or facilitate integration of
persons with ID and the effectiveness of services provided. It can also
point to areas in which awareness-raising and educational programmes
are needed, as they have been found to promote more positive attitudes
towards persons with disabilities .Public attitudes towards persons with ID
have evolved significantly over time due to social changes, new
approaches to treatment and changes in how disabilities are defined.
Chief among these changes is the deinstitutionalisation of persons with ID
towards community-based care. (Patel, M., & Rose, J. 2014)

A positive attitude towards persons with ID translates into the belief that
they can participate as full members of the community and also be self-
determined. A negative attitude, on the other hand, refers to prejudice in
terms of the affective and cognitive dimensions of attitudes, and to
discrimination in terms of the behavioural dimension .Using another
perspective, the recent study described attitudes as the degree of social
distance that people in the general population prefer to keep between
themselves and persons with ID. Studies carried out in the 1990s revealed
mostly negative attitudes towards persons with ID and behaviours that
limited their independence and integration. These studies also reflected
resistance to the integration of persons with ID. More recent studies
evaluating attitudes towards persons with ID or other forms of disability
describe reactions of suspicion and even hostility to the idea of integrating
persons with limitations). The public seems uneasy, uncomfortable and
uncertain about how to act in the presence of a person with disabilities.
Individuals also feel fear and pity towards these persons. (Patel, M., & Rose, J.
2014)

Factors such as demographic variables (age, sex, ethnicity, education,

socio-economic status and place of residence) and contact with
individuals with ID are related to individual attitudes regarding IDs . With
the exception of contact with individuals with ID, results have not been
consistent as to the directions and the strength of the associations
between most of these various factors and attitudes towards persons with
ID. Some studies yield that negative attitudes increase with age, while
others indicate no effect . As for sex differences, some studies show that
women have a more positive attitude than men , while others found no
sex differences. Education seems associated with attitudes . When
attitudes are measured by the concept of social distance, being older, less
educated and having less contact with persons with ID, as well as a lower
level of functioning of the person with ID him or herself, were related with
the desire for more social distance from individuals with ID. (Patel, M., & Rose,
J. 2014)

Active interactions between the individuals in the general population and

persons with ID have systematically been shown to be an effective means
of increasing knowledge and acceptance of individuals with ID . Thus,
while attitudes are difficult to change. With a few exceptions, the majority
of studies have been carried out. More importantly, most studies on
attitudes towards individuals with ID pre-date the implementation of
policies promoting social inclusion. New studies are needed to describe
attitudes and beliefs regarding persons with ID that could facilitate or
present obstacles to the inclusion of these individuals. (Patel, M., & Rose, J.
2014)

INADEQUATE FUNDING:

Financial, legislative, and philosophical support for postsecondary education (PSE) programs
for individuals with intellectual disability has resulted in great increases in the number of
such programs across the country. Directors of new PSE programs have few research-based
guidelines to provide direction for integrating programs within colleges or universities. Most
perceived barriers and supports, with the exception of funding issues, improved over time.
Further, there was a significant difference in perceived support from six of the nine identified
institutions of higher education IHE collaborative partners from the inception of the program
to the present time. (Plotner, A. J., & Marshall, K. J. 2015)

The period of transition, during high school, is a time during which students with intellectual
disabilities (ID) should obtain and refine the necessary skills to successfully launch into
adulthood within their communities . Yet, despite efforts under such federal legislation such
as the Individuals with Disabilities Education Act and the No Child Left Behind Act of
2001 , transition outcomes continue to be disappointing. The mandate in special education
beginning at age 16 from IDEA is to prepare youth for “further education, employment, and
independent living” .However, students with ID continue to fall behind, and are more likely
to be unemployed or underemployed in comparison with their peers without disabilities, and
thus are at risk for indefinite poverty. Outcomes for minority youth with disabilities and
youth with more significant disabilities are even more dismal .( Mock, M., & Love, K.2012).

Historically, students with ID have been segregated from their peers without a disability in
many aspects of life (i.e., school, living, work, community sports. Increasingly, though, they
are becoming part of the social, educational and vocational aspects of their communities.
Despite these improvements, the National Longitudinal Transition Study 2 points to a
significant gap between students with ID and their age peers in terms of academic
achievement and acquiring daily functional skills. Students with ID are less likely than their
peers without a disability to graduate from high school, obtain competitive employment, or
live independently .Educational institutions have responded to these findings by making
available more educational and community experiences that can provide authentic
experiences of living, working and learning in their communities .In particular, postsecondary
education (PSE) programs have become increasingly creative in offering students with ID
individualized supports and access to higher education. Simply stated, an inclusive PSE
program is a partnership among a university, a school, and/or an adult disability support
agency. In such situations, students with ID between the ages of 18 to late 20s can attend
college, participate in college courses (typically through an audit), and participate in the life
of the campus (i.e., clubs, teams, intramural sports, social activities), and sometimes live on
campus. Students enter through an alternative admissions process, which typically includes
an application, interview, and campus tour. Supports for the students are provided by school
district teachers, campus student mentors, disability services office, and/or disability agency
staff. The goal for students with ID is like that of any student who attends college—
employment, a better job than a high school diploma may offer, and life-long social
networks. With this in mind, the emerging literature on PSE and young adults with ID
support a range of models that provide for more inclusive postsecondary practices for such
students. .( Mock, M., & Love, K.2012).

Despite evidence linking PSE with positive long-term outcomes such as higher starting
salaries and a higher rate of employment, students with ID typically do not have opportunities
to participate fully in college .In fact, a mere 10% of youth with disabilities have access to
PSE. Of the known 250 campus-based programs nationally, the state of New York currently
has 25 such programs; of these, a large portion are substantially separate, providing few
opportunities for students with ID to participate in college courses .A National Coordinating
Center for the TPSID programs was funded to gather comprehensive data on implementation
strategies and outcomes. Information and data gathered by the coordinating center continues
to improve the overall foundation on which PSE programs are developed. The model
demonstration programs are an essential step in the development of inclusive higher
education as a field. .( Mock, M., & Love, K.2012).

While legislation and public policy related to PSE for students with ID provides general
direction on the range of services and funding streams, collaborating with multiple
stakeholders generates student-identified, creative, and flexible strategies for improving
inclusion on the college campus. There continues to be a momentous push to include
individuals with disabilities in local policy discussions about systems change related to
health- care, employment, and educational provisions. By committing to a collaborative
approach, community stakeholders become partners in the decision-making process and
agents of change regarding individualized services and supports .Successful approaches to
strategic planning with community partners are demonstrated in other areas of the
developmental disability field. In another state, community collaborations have been
successful in engaging community members in conversations that have led to real change,
regarding employment for people with developmental disabilities .On the federal level, a
collaborative, coordinated approach with discussions, including a variety of networks and
service agencies, has also been used to enhance services for the aging population and to enact
pivotal federal laws such as the Americans with Disabilities Act of 1990 .( Mock, M., &
Love, K.2012).

Over the past several years, in an effort to increase statewide collaboration of inclusive PSE
efforts in the United States, Think College (at the Institute for Community Inclusion at the
University of Massachusetts-Boston) with funding from the federal Administration on
Intellectual and Developmental Disabilities (AIDD), has funded statewide planning mini
grants. The efforts described in this article were funded in part by a mini grant, with
additional funds provided by a private foundation. .( Mock, M., & Love, K.2012).
The recent changes to the HEOA lead stakeholders to wonder about the lack of
progressiveness of local and state educational policies. Two separate issues were raised at the
summits: (1) state education policies regarding diplomas and curriculum requirements for 18-
to 21-year olds with disabilities; and (2) state agency collaboration (vocational,
developmental disability, education) to employment or PSE for transition age youth. Many
participants expressed that the current IEP diploma option for students in the state who are
unable to fulfill local diploma requirements is meaningless once they leave school. One
parent said, “IEP diplomas are worthless. To take a course for credit, you have to have a real
diploma or [pass a high school diploma equivalency exam].” Students unanimously agreed
that IEP diplomas do not illustrate their strengths or vocational skills and often create barriers
if they want to continue their learning in a higher education setting. Further, “ability to
benefit” placement tests, typically required for enrollment into a community college, are
major barriers for students, even if extensive writing or mathematical skills are unnecessary
for the course they wish to take. A recent initiative within the U.S. Department of Education
will bypass the “ability to benefit” placement test through participation in a approved
Comprehensive Transition Program. ( Mock, M., & Love, K.2012).

Many family, agency, and public school stakeholders expressed apprehension about the role
of state education and vocational rehabilitation agencies in easing the transition from school
services to adult services. One public school stakeholder said, “The state education
department is a major issue. [We need] to have a process that is proactive not reactive when
setting up programs.” Agency stakeholders believe they are confined by policies set forth by
state and federal vocational rehabilitation and the developmental disability agencies. Some
agency participants expressed that they feel billing procedures are not conducive to PSE. One
example mentioned was billing for direct service may not allow for students to independently
walk across a campus. An inability to support a goal of independence is not in the best
interest of the student. These and other funding mechanisms are the key to solving many of
these systems barriers. Innovative funding mechanisms would allow agencies and schools to
creatively support students with ID on a college campus. (Mock, M., & Love, K.2012).

Many stakeholders were concerned about the conflict in mission and philosophy related to
employment and lifelong learning for individuals with developmental disabilities. Conflict
exists among professionals' beliefs about people with intellectual and developmental
disabilities going to college; the tension is between those who believe college is a viable
option and those who do not. One participant said, “There needs to be a serious dialogue
between the [disability services personnel] and the [state] education department
[personnel]; they are never on the same page and we need more serious cooperation.”
Further, families agreed and questioned the amount of effort put forth toward communication
and collaboration in transition services for their children. One parent said, “When can the
[disability service system personnel] and state education department [personnel] get
together? I would like to understand the lack of communication between them. There is not
enough collaborative direction to set up models of transitional services with the [disability
service agencies and schools]. Guidance [for] these programs has been lacking.” (Mock, M.,
& Love, K.2012).

Funding was noted as one of the major barriers for establishing new inclusive PSE
opportunities. The funding barrier is twofold: (1) students' or family members' ability to
private pay for individualized supports, services, and tuition; and (2) school district and
disability agency's ability to fund essential programmatic resources, such as rent,
transportation, and additional individualized supports. Entitlement in public school and how
the supports and services translate (or do not translate) into the higher education system was a
critical topic for all stakeholders. Even family members agreed that moving from the public
school system of entitlement to higher education is an issue. One family member said, “For
me, a big concern is the way students are entitled in high school and when you get to college,
you do not have entitlement for [your child] … When you get to college, it is hard to think
about now how you have to pay for your student's college [including individualized
supports].” Overall, funding poses a major barrier whether schools or agencies rely on
funding for direct supports or for tuition and books. Ensuring that all state agency partners are
collaborating and understanding the gaps in services was identified as an ongoing strategy for
improving the funding barriers. (Mock, M., & Love, K.2012).

Agency personnel expressed they felt pressure to continue paying for PSE opportunities,
rather than relying upon students and family members to pay the cost of tuition or additional
individualized supports. One agency stakeholder said, “Very often students and their families
don't see themselves as part of the funding pictures and feel the services as an entitlement.
They want other funders to pay the costs involved in the college experience.” While some
families questioned who should pay for services and tuition, others discussed the major
barrier that currently exists in accessing financial aid for their son or daughter. Students may
need a lesser course load than required for financial aid eligibility, resulting in families
private paying for tuition every semester. Participants also stressed that students may be more
successful taking a few courses a semester, but the cost of paying full tuition is unrealistic for
many families. More importantly, however, stakeholders desired knowledge about funding
sources to establish sustainable options for students, their families, school districts, disability
agencies, and colleges. Many stakeholders suggested sustainable funding streams, such as
blending vocational rehabilitation dollars and state education funds to provide individualized
supports and pay tuition costs. (Mock, M., & Love, K.2012).

COMPLEXITY OF SERVICE SYSTEM:

Personality, coping strategies and the presence of other disabilities (motor, social or
sensory), as well as the support offered by family, friends and the community, influence a
person’s requirement for support with daily living. Support may be required with daily living
skills such as self-care, mobility and communication. Additionally, people with intellectual
disability can have difficulty in managing emotions and relating to other people, making it
important to also consider the levels of support required for them in non-core activity areas
such as making friends, maintaining relationships and interacting with others. The
individual’s disability experience is seen as a dynamic interaction between the person and
their environment; rather than solely as impairment itself, and it is the discriminatory
attitudes to persons with impairments that result in a disabling culture that excludes people
with disability from policy responses. This explanation is supported by Finkelstein and
Stuart’s proposal that people with disability should be viewed as ‘citizens with all the rights
of consumer choice in what products they wish to purchase and use in making their own
lives’. (Didi, A., Dowse, L., & Smith, L.2018).

Historically, the ‘needs’ of people with intellectual disability have been perceived as unique,
justifying their removal from their families and communities and placement in institutional
settings, segregating them from society and thereby decreasing their visibility. While from
the late 1960s on, there has been an international recognition that such people have the right
to a life in the community, deinstitutionalisation has not necessarily translated into rights
realisation. Even if located in the community, many people with intellectual disabilities
remain segregated via restrictions on their access and movement in ways often determined by
their service setting or support structures. This is particularly so for those who have complex
support needs associated with behaviours that pose a potential risk to themselves or others,
who pose significant challenges to systems of disability support. (Didi, A., Dowse, L., &
Smith, L.2018).

Unmet needs for people with intellectual disability can be based on both their impairments
and issues arising from the systems with which they interact. Since the 1990s, the term
‘complex needs’ has been used in international policy frameworks to describe groups of
especially disadvantaged people who present challenges to the system. Those described as
having ‘complex needs’ usually have multiple needs such as a combination of disability and
health needs (diagnosis, treatment and rehabilitation) and social needs (housing, social care
and independent living). The multiple nature of their needs means that there is often no one
support framework or service able to provide supports that span across or fall between
domains of service delivery; national and jurisdictional services, between government and
non-government services, and between services delivered by different portfolio agencies. In
this article, we shift the language. Rather than understanding the complexity needs as located
within disadvantaged individuals, we refer to individuals who experience ‘complex support
needs’. We do this to shift the focus away from the individual as ‘having’ complex needs, and
towards kinds and ways of supporting people who experience complex and compounding
forms of disadvantage. (Didi, A., Dowse, L., & Smith, L.2018).

The shift towards person-centred supports for people with disability has the potential to better
account for people with disability and complex support needs. People who experience
complex support needs often require multiple supports for participation in multiple areas of
activity, typically involving multiple service sectors. This requires a different approach to
providing and coordinating support, and in particular, a more carefully targeted approach
from universal services. The shift to person-centred supports provides for the significantly
unaddressed areas of support required to address the intersectional disadvantage and to enable
people with intellectual disability and complex support needs to live with dignity within the
community. Recognising and meeting this range of support needs requires an understanding
and conceptualisation of support that embraces the central position of disability as
constitutive of other dimensions of disadvantage including poor health and wellbeing, low
education and employment, poor housing, social isolation, low socio-economic status,
criminalisation and higher incidence of abuse and violence. We now turn to human rights
frameworks to explore potentially fruitful ways of understanding and conceptualising the
particular forms of intersectional disadvantage experienced by people with intellectual
disability and complex support needs. (Didi, A., Dowse, L., & Smith, L.2018).

Overlapping disadvantages faced by people with intellectual disability and complex

support needs

People with intellectual disability face multiple contexts of disadvantage across the domains
of health, early life, demographics and identity, social and economic issues, and contact with
the criminal justice system. For example, research shows that people with intellectual
disability experience increased physical health problems and inequity in access to health
care. People with intellectual disability are also likely to have lower socio-economic
positioning within the society, which further restricts access, compounding and contributing
to poor health. People with intellectual disability are also at greater risk for psychiatric
diagnosis compared to the general population and although the research is not conclusive,
there is some evidence which suggests that increasing psychiatric symptomatology is
associated with increased challenging behaviour .Young people with disabilities were 14
times more likely to experience entrenched multiple disadvantages in income, work,
education, safety and support than their non-disabled peers, with young people with
intellectual and developmental disability at increased risk of adversities due to a combination
of lower family socio-economic position and disability related discrimination and social
exclusion.These higher rates of intellectual disability are believed to stem from socio-
economic factors and ensuing health issues. There is strong anecdotal evidence that suggests
this high rate of intellectual disability is at least partially attributable to the impacts of severe
poverty and the resulting health disadvantages, including high incidence of foetal alcohol
syndrome, brain injury resulting from inhalant use, alcohol related brain damage, and other
acquired brain injuries. An extension of this argument traces this socio-economic inequality
and ensuing health disadvantages for indigenous Australians to historical factors of
dispossession and cultural alienation. (Didi, A., Dowse, L., & Smith, L.2018).

While there is limited research on the prevalence of adverse life events, it is believed that
children with moderate to severe intellectual disability are 2.9 times more likely to be
emotionally abused, 3.4 times to be physically abused and 6.4 times to be sexually
abused. People with intellectual disability are also at greater risk of homelessness and
unemployment. Data also indicate that people with intellectual disability are over-represented
as victims of sexual assault, while more than two-thirds of Australian women with an
intellectual disability have been subjected to sexual abuse before they turned 18 years of
age. In terms of access to justice, it has been noted that people with intellectual disability
were being interviewed without appropriate support persons and erroneous assessments were
being made about their legal competence. In many instances there are no systematic
approaches to identifying disability within the legal system and so lawyers and judges may be
oblivious to whether or not disability is related to the alleged offending. Similarly, young
people with intellectual disability, especially young indigenous people with disability, are
significantly over-represented in juvenile justice populations and many young people in
custody have difficulty comprehending, communicating and understanding laws and societal
norms. (Didi, A., Dowse, L., & Smith, L.2018).

Challenges to the rights of people with intellectual disability and complex support needs

In this section, we reflect on how human rights provide a useful framework for making
visible the challenges for people with intellectual disabilities and complex support needs.
Drawing comparisons in international literature, to outline four specific challenges for this
group’s human rights: (i) equality and non-discrimination, (ii) access to justice, (iii) the use of
restrictive practices, and (iv) exploitation, violence and abuse. A detailed examination of the
concluding observations on the initial report of Australia, adopted by the Committee on the
Rights of Persons with Disabilities at its tenth session from 2–13 September 2013 shows that
the concerns raised by the committee largely reflected the challenges faced by people with
intellectual disability and complex support needs as identified above. While the committee
welcomed a number of positive developments such as the adoption of the National Disability
Strategy 2010–2020 and the introduction of a National Disability Insurance Scheme, they
were also concerned with a number of issues that were impeding the full implementation of
the CRPD. (Didi, A., Dowse, L., & Smith, L.2018).
One of the most significant concerns raised by the committee was the interpretive
declarations that had been placed on Articles 12, 17 and 18 .These declarations are
discriminatory and go against the spirit of the general principles of the convention which
reiterate respect for the inherent dignity, individual autonomy and freedom to make one’s
own choice, and non-discrimination for full and effective participation and inclusion in
society. Article 18 relates to the liberty of movement and nationality, and the declaration
clarifies understanding that the CRPD does not create the right for a person to enter or remain
if he or she is not a national, nor that it should impact on health requirements for non-
nationals seeking to enter or remain in . This has resulted in people with disability, including
people with intellectual disability, being unable to enter even when they are part of a family
unit that has been given citizenship rights to the country. (Didi, A., Dowse, L., & Smith,
L.2018).

STIGMA AND DISCRIMINATION:

People with intellectual and developmental disabilities (IDDs) around the world experience
stigma that can limit social inclusion and increase disparities with the general population.
Stigma involves discrimination, prejudice and exclusion of people in various formsand often
affects how one is accepted or can participate within a community. It is complex and
individual experiences can be highly varied and diverse, depending on the circumstances. The
literature describes various forms of stigma, including public stigma, self-stigma, courtesy
stigma and affiliate stigma . As indicated by its name, and most widely known, public stigma
incorporates prejudicial, discriminatory and stereotypical perceptions and behaviours towards
people with IDD from the broader society . When individuals with IDD internalise these
negative attitudes and behaviours towards them and believe themselves to be de-valued, this
is referred to as self-stigma. Conversely, courtesy stigma describes the prejudice or
discrimination experienced by others associated with the person with IDD (i.e. family,
friends), and affiliate stigma occurs when they also internalise these negative attributes and
endorse such stereotypes prevalent in society . Stigma and exclusion can have serious
consequences for people’s participation, mental wellbeing and overall quality of life , hence,
the importance of developing and implementing interventions to promote community
acceptance and participation of people with IDD. (Jansen-van Vuuren, J., & Aldersey, H. M.
2020).

Researchers are also recognising that in many cases, cultural values, beliefs, and practices
influence how stigma is expressed and experienced for people with IDD, as well as
approaches for increasing community acceptance and belonging. For example, individuals
with IDD and their families in low-income countries often appear to experience greater
stigma with more serious consequences, including some children with IDD being chained and
beaten , certain people with IDD being abandoned and left homeless, and denied basic rights
to education, healthcare and employment factor conceptualisation of culture in relation to
stigma towards people with IDD, including horizontal individualism and collectivism, and
vertical individualism and collectivism, where vertical cultures value hierarchy whereas
horizontal cultures value equality. Historically, Western values of individualism and
promoting independence and productivity have predominated the framing of stigma and
inclusion interventions; however, several authors critique this approach as perpetuating
implicit prejudice against people with IDD . Now, there appears to be increasing discussion
about the importance of adapting anti-stigma interventions to be relevant within the specific
cultural context. Consequently, for support providers from outside of the given cultural
context of the individuals or communities they are serving, cultural training is critical to
ensure their approaches are relevant and appropriate. (Jansen-van Vuuren, J., & Aldersey, H.
M. 2020).

In addition to cultural considerations for stigma reduction, recent findings from the IDD
literature demonstrate that interventions aimed simply at service access or attendance and
increasing social networks are insufficient, and we need to look beyond mere ‘acceptance’ as
the end goal. Instead, people with IDD describe belonging as crucial for community
acceptance, participation and overall wellbeing in various settings. Renwick depict the
experience of belonging for youth with IDD as ‘engaging in social relationships, interacting
with people who are similar, negotiating meaningful roles in the community, and through
navigating norms and expectations – finding a good fit’. The quality of relationships and
interaction with others is more important than just being included or invited, and reciprocity
and respect should characterise these relationships. Several Australian studies have found that
people with IDD describe belonging ‘(i) in relation to place, (ii) as being part of a
community, (iii) as having relationships and (iv) as identity’, and that ‘being known and
valued is central to a secure sense of belonging and personal identity . Belonging is a
subjective, complex and multifaceted construct that puts greater focus on understanding the
individual and their context and promoting agency/choice rather than implementing generic
approaches to inclusion. Thus, incorporating community belonging as a critical outcome for
anti-stigma interventions also resonates with the need to consider cultural values and
nuances. (Jansen-van Vuuren, J., & Aldersey, H. M. 2020).

If community acceptance and belonging for people with IDD are end-goals for anti-stigma
interventions, it is also important to consider the construct of ‘community’. Challenges some
of the traditional assumptions of community, which can imply ‘sameness’ and
‘normalisation’ and where achieving access to a community relies on culturally bound values
of independence, productivity and power imbalances. It is not enough for interventions to
attempt to make the individual with IDD more ‘acceptable’ or conform to society (i.e.
through increasing independent living skills) or even to simply remove some of the access
barriers so that people can participate. She contends that we need to reconceptualise our idea
of community and appreciate its complexities and tensions by focusing on justice, care,
dignity and giving and embracing diversity: ‘Full independence, a false ideal for anyone,
should not be the end goal … Community does not manifest when members achieve access to
an ideology, group of people, or physical space, but, rather, when participants practice
unconditional giving to each other’ .Others similarly recognise that independence and
productivity are not the only ways to participate in a community and there needs to be
emphasis on ‘ways of being’ and realistic/feasible goals for people with IDD to engage with
and belong in their community. Hence, societal-level interventions also need to address some
of these misconceptions around ‘community’ and aim to challenge oppressive attitudes and
behaviours such that those with IDD and all people are accepted and valued for who they are.
Therefore, this review will explore the recent literature to understand current approaches and
developments to mitigate stigma and promote community acceptance and belonging for
people with IDD across diverse cultures. (Jansen-van Vuuren, J., & Aldersey, H. M. 2020).

POLICY BARRIERS IN SPECIAL EDUCATION:

Families face systemic barriers when deciding on educational services for their children with
intellectual and developmental disabilities (IDD), including autism spectrum disorder (ASD).
Further, caregiver health and well-being is critical for supporting children with IDD. In
addition, research has shown a negative correlation between the quality of special education
experiences and caregiver health and well-being. However, the barriers and facilitators to
positive special education experiences and health are unclear for parents of children with
IDD. By identifying barriers, interventions can be created to ameliorate such issues. By
identifying facilitators, interventions can be developed to capitalize on the strengths of Latino
families. Barriers to positive special education experiences included: cultural divergence,
limited access to resources, stigma, and lack of access to special education knowledge;
facilitators included: understanding special education services, parent-school communication,
and parent support. Barriers to health included: socioeconomic status and certain
characteristics of the child with IDD; facilitators included: family support and parent support.
This review has implications for research and practice to both improve the quality of special
education experiences as well as to promote caregiver health. (Rios, K., & Burke, M.
M.2021)

Many articles reported that greater special education knowledge facilitated positive special
education experiences, including stronger family-school partnerships and increased access to
services identified four types of special education advocacy: intuitive advocates, disability
experts, strategists, and agents for systemic change. An intuitive advocate refers to
individuals advocating for change using intuition. Disability expert refers to a parent using
her expertise from sources outside of the school context (e.g., doctors, disability-specific
organizations, and commercially available texts and websites) to advocate. Agents for
systemic change were described as participants who discussed concerns about the level of
complex knowledge and social networking require to advocate for their children, motivating
them to advocate for systemic change. Strategist refers to a parent who uses her knowledge
about special education rights and the importance of documentation to advocate found that
participants most often used strategist advocacy. (Rios, K., & Burke, M. M.2021)

Special education knowledge, resources, and parent-school communication were important.

Limited access to special education knowledge and lack of parent-school communication
were barriers to positive special education experiences. Conversely, understanding special
education services and having parent-school communication facilitated positive experiences.
This review suggests that to improve special education experiences, parents need to be:
educated about their special education rights, provided with culturally responsive resources,
and able to communicate with school personnel in various ways. (Rios, K., & Burke, M.
M.2021)