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International Journal of Developmental Disabilities logoLink to International Journal of Developmental Disabilities
. 2022 Apr 7;70(1):89–99. doi: 10.1080/20473869.2022.2058782

A model proposal development study for adults with intellectual disabilities in Turkey compared to USA

Ali Kaya 1,✉, Michael L Wehmeyer 2
PMCID: PMC10916900  PMID: 38456131

Abstract

Intellectual disability (ID) persists from birth through adulthood and aging. Thus, the support provided to individuals with intellectual disabilities (IwID) in adulthood is essential to increase their self-determination and quality of life. This research aimed to determine how IwID may receive support for education, working life, accommodation, and leisure in adulthood in the Turkish context by increasing their and their families’ quality of life without socially discriminating against them. Qualitative data were collected in two stages, combining semi-structured interviews and the Delphi study technique. Results prompted the recommendation that a legal basis for transition-to-adulthood planning be established in Turkey for a functional adult service model. Next, a model with specific standards by which multidisciplinary experts analyse education, work, leisure, and housing alternatives for preadulthood and adulthood should be developed and coordinated by the Turkish Ministry of National Education and the Ministry of Family. Implications for the future are further discussed.

Keywords: intellectual disability, adulthood, Turkey, Delphi study technique

Introduction

Intellectual disability (ID) affects the entire human life. Today, a child born with ID can usually reach adulthood like their peers without ID. It is estimated that the rate of individuals with intellectual disability (IwID) worldwide is between 1% and 3% (American Psychiatric Association 2013; Harris 2006), and it is known that six out of every 1000 people have severe ID (American Psychiatric Association 2013). Supporting this ratio, in their review covering 52 countries, Maulik et al. (2011) found the prevalence of ID as 10.37 per 1000 births. In addition, they reported that the rate of adults with ID in the general population varied between 0.7% and 0.9% (Maulik et al. 2011). It is estimated that approximately five million people in the United States of America (USA) have ID (Braddock 2002; McKenzie et al. 2016) and that 1.3 million of these people are adults (Brault 2012). IwID make up approximately 1% of the population in Turkey, which corresponds to about 500,000 people (Turkey General Directorate of Disabled and Elderly Services 2021). IwID need various supports during their childhood, and this need continues either increasingly or evolving toward and in adulthood. While the types and frequency of support needs may vary similarly across individuals, promoting support types and frequency might vary by country.

Services for IwID in the United States of America (USA)

Health and social services in the USA for IwID and their families are quite different from other countries, and thus, families need to understand the differences specific to the USA (Williamson and Perkins 2014). Services offered to IwID in the USA are provided by a combination of financing mechanisms of public and private institutions, and these services are regulated by federal and related state regulations (Patel et al. 2018). The services show major variations whether they are provided by public or private entities (Braddock et al. 2013). As more and more people with ID age, they are more likely to leave their family homes and need housing services for extended periods (Woodman et al. 2014). While 267,682 IwID utilised institutional care services in the USA in 1988 (Lakin et al. 2003), this number increased to 460,597 in 2011 (Larson et al. 2013). In addition, the number of IwID living in their own or rented homes in the USA doubled from 1998 to 2011 (Larson et al. 2013). According to 2018 data, 5.6% of the general population in the USA does not have independent living skills, and 2.6% cannot perform their own self-care (Erickson et al. 2020). It is known that IwID cannot receive most services they need due to extended waiting lists (Taylor and Hodapp 2012). However, IwID in the USA can continue their education in adulthood through postsecondary programs for young adults with IwID and nonprofit organizations for informal education and capacity building in adulthood in general. Services such as independent living skills, peer support, and working life support are provided for adults with ID in related centres (Independence, Inc. 2020).

Services for IwID in the Republic of Turkey

The Republic of Turkey (hereafter Turkey) is a social state, and all health and social services offered to IwID in adulthood are financed publicly. According to 2020 statistics, no IwID is waiting to receive benefits and services. About $1.5 billion of in-home care payments are made annually for 535,000 individuals with special needs who are unable to self-manage their needs (Turkey General Directorate of Disabled and Elderly Services 2021). Due to intercultural differences, the number of IwID who rent their own house is extremely limited in Turkey. There are no statistical data on this situation compared to the USA. About 30,000 IwID who don't live with their families live in institutions (Turkey General Directorate of Disabled and Elderly Services 2021). Institutionalized care supports for IwID are divided into a two-fold system in Turkey, including group homes, and care and rehabilitation centers. The centers are generally multi-story structures with ‘three people in one room’ system where IID might receive lifelong care and support (Kaya and Cavkaytar 2022). IwID need support in health and care as well as education. They can enroll in schools that provide formal education and services until the age of 27 (Turkish Ministry of National Education 2018).

Additionally, IwID can learn various skills and concepts within limited periods at 2,505 special education centres during their adulthood (Statistics: Turkey Ministry of National Education 2020). Similarly, adults with ID can attend local public education centres for about 300 distinct course modules (Statistics: Turkey Ministry of National Education 2020). These services continue for IwID, albeit at a diminishing pace, during the transition from school to adult life. However, there is no systematic model that includes supports and services in various life areas, including education, leisure, and accommodation for adults with ID, provided by experts and specialised personnel in ID.

Statement of the problem

Using additional resources for service adequacy in ID presents significant costs for societies (Maulik et al. 2011). Due to the inadequacy of the adult service system during the period of advancing age, parents are the leading responsibility takers for providing care to IwID (Krauss et al. 2005). Thus, parents of adults with ID struggle with mental health issues more than parents of adults without disabilities (Seltzer et al. 2011). With the parents' aging, this responsibility of care-providing transfers naturally to the siblings in the family setting (Heller and Arnold 2010). In some cases, IwID transfer to institutional care services, which might be triggered by the decreasing health of mothers and aging parents (Essex et al. 1997) or decreasing health of IwID (Jokinen et al. 2012). However, exposure to repetitive displacements can cause emotional and behavioural problems for IwID (Hamilton et al. 2005). Research shows that living in a centre with a vibrant community as a valuable part of the society, as opposed to a segregated institution, increases the quality of life and adaptive behaviour of IwID (Kim et al. 2001; Lemay 2009).

Purpose of the study

This research aimed to determine how IwID can receive supports and services on education, working life, accommodation, and leisure, especially in adulthood, by increasing their and their families’ quality of life without discriminating against them in the Turkish social context. Thus, the following questions guided our research: (a) What kinds of services are provided to adults with ID in the USA? (b) What kinds of services can be provided to adults with ID in Turkey? (c) What can be transferred related to services provided for IwID from the USA to Turkey? and (d) What kind of model can be proposed for adults with ID in Turkey? This research fills the research gap on providing a model alternative to Turkey, a developing country. Also, it seeks to begin the conversation on the guidance and revision of Turkish policies and procedures for adults with ID.

Methodology

Research design

This study used a qualitative research method that has the potential to reveal the depth and originality of the information to be obtained from a smaller sample to reduce the effect of the inability to reach a larger sample. The data were collected in two stages.

Phase 1

The first author (AK) went to the USA from Turkey to conduct face-to-face semi-structured interviews and observe various settings. The USA is chosen for this study because of the amount of the academic studies related to self-determination. AK first examined institutional data and documents on the U.S. adulthood system to set an example for the proposed model. These observations and documents were not included in the research, which were used directly as data. It is intended for the researcher to obtain an opinion about a foreign country and system. Then, semi-structured interviews took place in the USA.

Semi-structured interviews

AK developed an interview form that included demographic data in the first section and 10 questions in the second section to conduct semi-structured interviews. First, he consulted two academicians with PhDs in the special education field to determine the appropriateness of the draft interview form (prepared in Turkish) regarding meaning, expression, content, and the main purpose of the research and ensure content validity. Then, an academician with Turkish origin and English language proficiency who had earned a PhD in the USA in special education translated this prepared Turkish form into English. After the translation process, we conducted a pilot interview to test the questions, then finalised the interview form. The interviews occurred between July 12, 2019 and September 20, 2020. Table 1 displays demographic data about the participants.

Table 1.

Demographic data on the participants included in the semi-structured interviews.

Pseudonym Gender Age Profession Relevance Native Language
PQ1 Mb 45 Academician Special education English
PQ2 M 38 Academician Special education English
PQ3 Fa 33 Doctoral Student Special education Turkish
PQ4 F 62 Teacher Special education English
PQ5 M 27 – Individual with special needs English
PQ6 M 40 Project worker Individual with special needs English
PQ7 F 43 Nurse Mother of an IwID English
PQ8 F 42 Teacher Special education English
PQ9 M 62 Academician Special education English
PQ10 M 51 Architect Father of an IwID English
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a

female.

b

male.

IwID, individuals with intellectual disability.

We employed the purposive sampling method in the participant selection. The inclusion criteria for participation in the semi-structured interviews were (a) living in the USA and (b) working in the field of special education with adults with ID or having a child with ID/being affected by ID.

Phase 2

Delphi is a research technique that uses consecutive questionnaires. After completing the statistical analysis of one questionnaire, the researcher communicates to the participants the results of the analysis, that is, the general tendencies of the respondents, within the subsequent questionnaire. In this way, participants can review their thoughts by comparing them with their results and different views and approaches. The Delphi technique, named after an ancient Greek city where a soothsayer lived, was first used to predict future technological developments (Delbecq et al. 1975; Fish and Busby 2005).

We used the e-Delphi technique in this study following the semi-structured interview data analysis. E-Delphi is a type of Delphi technique intended for researchers to conduct studies efficiently. It is also valuable for providing a means for easy communication with participants and for expressing their ideas more effectively (Chou 2002). Also called web-based Delphi research in the literature, e-Delphi is an iterative method of collecting data over several rounds using an online survey tool (Helms et al. 2017).

Participants

Inclusion criteria for participation in the Delphi study were (a) living in Turkey and (b) working in the field of special education with adults with ID or having a child with ID. Table 2 shows demographic data on the participants included in the Delphi study.

Table 2.

Demographic data on the participants included in the Delphi study.

  1st round n % 2nd round N % 3rd round n %
Age 20 − 30 2 6 20 − 30 – – 20 − 30 – –
31 − 40 14 40 31 − 40 12 40 31 − 40 10 40
41 − 50 10 29 41 − 50 10 33 41 − 50 8 32
52 − 60 6 17 52 − 60 6 20 52 − 60 5 20
61 − 70 3 8 61 − 70 2 7 61 − 70 2 8
Gender Fa 19 54 F 16 53 F 14 56
Mb 16 46 M 14 47 M 11 44
Relevance Academician 8 23 Academician 8 27 Academician 8 32
Teacher 13 37 Teacher 11 37 Teacher 7 28
Parent 12 34 Parent 10 33 Parent 9 36
Politician 2 6 Politician 1 3 Politician 1 4
Total   35 100   30 100   25 100
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a

female.

b

male.

Ethics

The university ethics committee approved the study proposal (PN: 10910), and we informed the participants via a written information form and verbal explanation before the interviews that participation was voluntary and that they could withdraw at any time without giving reasons.

Data analysis

Data analysis in qualitative research includes preparing, organizing, and coding the data, identifying themes from the coded data, and finally presenting the findings obtained from the data through tables or discussions (Creswell 2007). We analysed both the study’s semi-structured interviews and the first round of questions developed with the Delphi technique using content analysis. Content analysis is a research technique used to make reproducible and valid inferences from texts or other meaningful material (Krippendorff 2004). The findings section includes semi-structured interview findings with quotations from the interviews. We analysed the first-round Delphi questions with content analysis to develop the survey questions.

The main statistics used in Delphi studies to reveal the general judgments of the participants include central tendency (i.e. mean, median, and mode) and central distribution measures (i.e. standard deviation and interquartile range [IQR]; Gordon 1994). Accordingly, as an indicator that the participants agreed on the items in the second and third Delphi rounds, it is necessary that (a) the median value for the items should be 4 or greater, (b) the IQR should be 1 or less, and (c) the total percentages of the fourth and fifth frequencies answered by the field experts should be 75 or greater. Therefore, we followed these principles to analyse the responses received in the second and third rounds.

Validity and reliability

We applied Miles and Huberman (1994) formula (Reliability = Consensus/Consensus + Disagreement) to measure the intercoder reliability for the interviews. According to this formula, the intercoder agreement should be higher than 80%. Another expert with a PhD in special education independently coded half of the interview transcripts, randomly selected. Comparison of the codes indicated that the number of codes with consensus was 91 and with disagreement was 12, which yielded 87% intercoder reliability.

In addition, to ensure the content validity of the Delphi study, we selected panelists according to predetermined criteria, and more than 10 field experts participated in the Delphi rounds. Consensus rates can be analysed to estimate the reliability between Delphi rounds. The evaluation of the consensus rates between the second and third rounds of the study indicated that the field experts accepted most of the items and that the data summary presented the panelists’ answers correctly (Fish and Busby 2005). Accordingly, the evaluation of the consensus regarding the Delphi rounds showed 91% agreement on the second round, 95% agreement on the third round, and 93% agreement resulting from the overall Delphi rounds.

Findings

Semi-structured interview findings

The analysis of the transcripts revealed five themes, namely, adult supports, system, housing alternatives, working life, and problems and solutions. Figure 1 shows the themes, categories, and related frequencies that emerged.

Figure 1.

Figure 1.

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Themes, categories, and related frequencies.

Adult supports

Figure 2 shows the categories that emerged under the adult supports theme, which lists the direct and indirect services offered to adults with ID.

Figure 2.

Figure 2.

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Adult Supports: Categories and frequency distributions.

As shown in Figure 2, nonprofit organizations and advocacy groups are the first to come to mind regarding the supports offered during adulthood in the USA. Relatedly, participant PQ4 stated:

Our city has many agencies and programs that provide assistance and support to family members or caregivers of students with ID. There are many nonprofit agencies that have been wonderful in providing much-needed support to families in need. (PQ4)

It is crucial to develop transition and future plans before reaching adulthood. Relatedly, participant PQ9 stated:

These goals can address any transition-related area, from employment to community inclusion to independent living, and transition services are provided by schools to enable students to meet these goals. (PQ9)

U.S. researchers frequently conduct studies involving self-determination for adulthood. Relatedly, participant PQ9 stated:

A focus on promoting self-determination is usually a part of secondary special education and transition services. For adults, certain models of support tend to emphasise self-determination, and these models tend to be community-based, individualised supports, and a focus on choice. (PQ9)

The culture of volunteerism and volunteer services are widespread in the USA. Relatedly, participant PQ3 stated:

It's not just the organizations; there are groups. Not only people with disabilities, their families, or people who just want to help, but also people who have never encountered or experienced the life of an individual with disabilities do this to become a volunteer. (PQ3)

Daily life skills are among the functional skills necessary for adulthood. Relatedly, participant PQ3 stated:

An adult person does not know how to go to a shopping mall or return home. In this case, one of the special services companies can provide a personal support worker. Or people who volunteer just like me can help. But they receive an education first; they do not go and do it at once. (PQ3)

In addition to these findings, the families of IwID in the USA often receive indirect services such as care support and support meetings.

System

Figure 3 presents the categories of the system theme regarding the adulthood of IwID in the USA.

Figure 3.

Figure 3.

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System: Categories and frequency distributions.

As shown in Figure 3, the first item regarding the services offered during the adulthood of IwID in the USA in terms of the system is regional differences. Relatedly, participant PQ7 stated:

In general, the laws and rules of the federal system may vary on a state basis. (PQ7)

Regarding community support, direct support, diversity, and health system in the system theme, the statements of the participants were as follows:

This may involve support from direct support workers, occupational or physical therapists, and even family members. (PQ8)

One of the biggest issues in providing community-based supports that respect choice and self-determination are hiring, paying, and retaining high-quality direct support workers. (PQ9)

The quality of services in the US ranges widely, from practices that are not considered best-practice (congregate settings), to highly individualised supports. (PQ9)

When it comes to medical issues, there are two systems, namely, Medicaid and Medicare. (PQ3)

Housing alternatives

Figure 4 shows the categories of the theme of housing alternatives for adults with ID in the USA.

Figure 4.

Figure 4.

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Housing Alternatives: Categories and frequency distributions.

As shown in Figure 4, supported living comes to the fore among the housing support of adults with ID in the USA. Although care centres are limited in number in the USA, as in the rest of the world, they continue to exist. Relatedly, participant PQ3 stated:

The best practice in residential supports is to enable people with ID to live on their own or with preferred roommates in supported living circumstances. However, the dominant model for residential supports remains group homes (though those are not 'best practice' at this time). There remain several states that have larger, congregate institutions, but those are gradually declining and are not considered effective practices. (PQ3)

Working life

Figure 5 displays the categories of the theme of working life of adults with ID in the USA.

Figure 5.

Figure 5.

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Working Life: Categories and frequency distributions.

According to Figure 5, IwID in the USA go through a vocational training period to prepare them to secure jobs during adulthood. Vocational counselors can participate in this process, and working life support continues when IwID start their jobs. The statements of two participants regarding this process are as follows:

Vocational counselors work with students and teachers to assist students in getting a job and provide support on the job. (PQ8)

Vocational counselors do a follow-up on students 3 or more years after graduation. (PQ4)

Problems and solutions

Figure 6 shows problems and solutions regarding services for adults with ID in the USA.

Figure 6.

Figure 6.

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Problems and Solutions: Categories and frequency distributions.

As seen in Figure 6, the biggest problem in the USA is the waiver lists created for IwID to access services free of charge and the funding depending on this situation. This theme includes the categories of disability insurance, technology, and social state. Some statements of the participants on this theme are as follows:

You can consider it like a financial exemption. Unfortunately, it takes years between entering the system and inclusion in the exemption category. (PQ10)

The system remains too dependent upon older, less effective models like group homes or sheltered workshops, and although there are better and more inclusive models, it is difficult to move the system, in part because of funding issues, but mainly because of attitudes. (PQ9)

Still, models that shift the funds directly to people with disabilities and their families, such as the National Disability Insurance Scheme in Australia, show promise. (PQ9)

When we compare the findings with the demographic data of the participants; it is seen that IwID and participants who have family members with ID (PQ5, PQ6, PQ7, P10) mostly focus on the regional differences of these services, the fees of the services, and the waiting times to reach the services. On the other hand, professionals working in the field of special education (PQ3, PQ4, PQ8, PQ9) focused on how to develop all the services offered in the adulthood of IwIDs and self-determination.

In addition, it should be noted that the differences between the welfare systems between the USA and Turkey are also reflected in the interview transcripts. While the participants especially emphasize non-private organizations, related services are provided by the government in Turkey.

Delphi findings

The Delphi findings of the study fall into classifications as first-, second-, and third-round findings. Table 3 includes invitations to rounds, questions, number of responses, and the analysis method.

Table 3.

Quantitative data from the Delphi study.

  1st Round 2nd Round 3rd Round
Number of invitations 45 35 30
Number of responses 35 30 15
Rate of responses 64.7 77.2 88.2
Data collection tool Open-ended questions 5-point Likert type questions 5-point Likert type questions
Number of items 5 92 81
Data analysis Content analysis Mean, standard deviation, median, interquartile range Mean, standard deviation, median, interquartile range
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First round of the Delphi implementation

Based on this study’s semi-structured interview findings, we sent five open-ended questions and a participation invitation to the participants. These questions were about education, accommodation, working life, and leisure time in the adulthood of IwID in the USA, system design, and general views of the participants. We analysed the participants’ responses with the content analysis method, then identified themes and developed multiple-choice questions. Table 4 displays examples of the categories and related questions.

Table 4.

Examples of qualitative questions.

Category Example survey questions
Education Adult education institutions should be opened.
Working life Professional workshops should be established for IwID.
Leisure time The interests and preferences of individuals for their leisure time should be determined.
Accommodation IwID should be offered the chance to choose among accommodation alternatives in adulthood.
System design A database should be established for adults with ID.
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Second round of the Delphi implementation

After the first-round analysis, we identified six themes and developed 92 five-point Likert-type questions, and sent them to the participants as the second round of the Delphi method. Table 5 shows the theme distribution of the second round and consensus rate.

Table 5.

Statistics of second-round delphi questions.

Theme Education Working life Leisure time Accommodation System design
Number of questions 23 12 13 13 31
Questions that were not agreed on 3 0 0 2 6
Rate of consensus 87% 100% 100% 85% 81%
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As seen in Table 5, the consensus rate was 100% on working life and leisure time, 87% on education, and 85% on accommodation. Finally, in the system design theme, which reflects the main aim of the current study, the responses reached 81% consensus.

Third round of the Delphi implementation

According to the second-round analysis, we eliminated from the third round 11 multiple-choice questions on which the participants were unable to build consensus. Thus, we sent the participants the third Delphi round that included 81 questions. Table 6 contains the theme distribution of the third round and consensus rate.

Table 6.

Statistics of third-round Delphi questions.

Theme Education Working life Leisure time Accommodation System design
Number of questions 20 12 13 11 25
Questions that were not agreed on 0 0 0 0 0
Rate of consensus 87% 100% 100% 85% 77%
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Discussion

The purpose of this study was to develop a model proposal for the adulthood of IwID living in Turkey. Thus, we examined the USA context for the services, and sought the opinions of parents, teachers, administrators, and academics in Turkey as the parties invested in this system. Based on the findings, the discussion section focuses on education, working life, accommodation, leisure time, and system design in adulthood.

Education

The findings point to the necessity of including the transition to adulthood services, continuing to teach daily living skills and social skills in adulthood, and recognising the importance of family participation. Landmark and colleagues (2010) revealed the same findings. Increased quality of life of IwID in their adulthood parallels increased opportunities for self-determined behaviour (Wehmeyer and Schwartz 1998). The current study underlines the need for studies on the self-determination of IwID both before and during adulthood. In addition, the current study determined that systems need to develop transition plans to properly prepare IwID for adult education programs before adulthood. This finding is consistent with other studies in the literature (e.g. Barron et al. 2013; Foley et al. 2012; Landmark et al. 2010). In addition, the education of IwID in their adulthood is not only limited to them but also concerns their family members and primary caregivers (Williamson and Perkins 2014). Based on this study’s findings, we concluded that the families and primary caregivers of IwID should also be educated on how to teach skills, especially in adulthood.

Working life

According to the research findings, in support of the study by Parmenter (2011), a comprehensive needs assessment and parent-employer partnership are needed so that IwID can more fully participate in working life during their adulthood. Employment is a critical step toward social integration outside the home for IwID (Parmenter and Knox 1991). According to the current research’s findings, independent working models ensuring inclusion in society in adulthood should be supported. In addition, according to Wehmeyer and Bolding (2001) study, after moving from a work or living environment that is more restrictive to one that is community based and less restrictive, IwID have more self-determination opportunities and choices. The findings of this study show that increased autonomy in working life may support the self-determination of IwID.

Housing alternatives

The literature underlines a less restrictive trend shift in developed countries on living options for IwID from large, isolated institutions, which was a trend in the last century, to small residential houses with community access (Braddock et al. 2001). Consistent with this, the current study found that residential settings should be the last option. Semi-structured interview data also support this finding. One of the research findings is that the preferences of IwID about housing alternatives should be given priority. This finding is also consistent with the content of Article 19 of the Convention on the Rights of Persons with Disabilities (United Nations 2006), stating that "persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement." In addition, this study’s findings suggest that housing alternatives for the future should be planned in advance. Parallel with this finding, Bigby (1996) recommended making the following: (a) implicit key person succession plans, (b) explicit key person succession plans, (c) financial plans, and (d) residential plans.

Leisure time

Examining the areas of primary needs of IwID and their families, it is clear that the support provided to IwID to perform leisure time activities comes first (Vilaseca et al. 2017). Parallel to this finding, the current study revealed that leisure times need to be planned systematically just as academic education processes are. King et al. (2003) listed the components that lead to effective participation of IwID in leisure time activities: (a) the support or opportunities provided by the relevant institutions in the environment in which the person lives, (b) the socio-economic status of the family, (c) the preferences of the family and the person on how to spend their leisure time, and (d) the competencies of the individual. In accordance with this finding, the current study found that public institutions should support the leisure time of IwID in adulthood and that individuals' interests and preferences should be taken into consideration.

In addition, regarding individuals’ preferences, Rogers et al. (1998) concluded that IwID had problems developing interest/preference for leisure activities and participating in these activities independently because they had lower self-determination skills. One of this research’s findings is the use of auxiliary technologies in leisure time. This finding is consistent with studies conducted by Chan et al. (2014), Eliçin and Kaya (2016), and Nepo et al. (2021) which discuss how to evaluate leisure time by using technological devices.

System design

According to the findings of the current study, planning for adulthood should start early to create a system that can be functional in adulthood. As a matter of fact, the Individuals with Disabilities Education Act (IDEA) in the USA and the U.S. Department of Education recommend that transition planning should begin at the age of 14 and be in place before the age of 16 to facilitate the transition of IwID to adulthood. In addition, the IDEA allows young people to be under the support umbrella of the public school system until the age of 22 (Turnbull 2005). Supporting this law, the current study found that the models developed in various countries should be investigated in the process of creating transition plans in the Turkish context, a practice that currently does not exist (Aktaş et al. 2020), and transition plans for IwID should be prepared accordingly. Furthermore, research findings show that parents' stress increases during the adulthood of their offspring with ID, and that many have to quit their careers when their children’s school years end (Barron et al. 2013; Foley et al. 2012). In this study, we found that parents should be given psychological support during their children's adulthood and that lifelong learning and daycare needs should be met, which supports previous research.

Limitations and further research

Since this research was limited to 10 participants in semi-structured interviews and the Delphi study was limited to 1st Round 35, 2nd Round 30 and 3rd Round 15 participants, it does not reflect the own views of the IwID. Therefore, future research can focus on the opinions of IwID for their own adulthood periods. Additionally, future research should examine how self-determination studies can be carried out with IwID in Turkey. Examples from developed countries other than the USA, such as Germany, Canada and Australia can be examined. Opinions can be obtained from parents of Turkish origin IwID children who live in developed countries.

Conclusion and implications

In the USA, Canada, Australia, the UK, and Ireland, nongovernmental stakeholders, such as senior sector representatives, professional organizations, family organizations, charities, and parliamentary committees are advocates of adult life issues (Bigby 2010). In addition, there are state-sponsored or non-profit organisations (e.g. Merakey, Volunteers of America, Independent Living Institute, and Independence Inc.) in the USA, where IwID can receive services during their adulthood. When all these come together, in order for a service model to emerge and be functional, there must be a consensus between non-governmental organizations, parents, IwID, relevant official institutions and field experts.

When the findings of this study are compiled, the outlines of a model for IwID in Turkey can be suggested as follows: (a) first of all, transition plans that are not implemented in the pre-adulthood education life of IwID functional in a legal and practical sense, (b) emphasis can be placed on new and limited self-determination efforts in the field of intellectual disability in Turkey, (c) parents of IwID can organize and lobby for various entitlements, (d) non-profit and non-governmental organizations can be made stronger like in the USA, (e) life-long support centers with experts from different disciplines can be opened to provide support for IwID in all areas of life such as education, work, leisure time, and accommodation.

Funding Statement

This research was supported by The Scientifıc and Technological Research Council of Turkey (TUBITAK) 2219 Program.

Disclosure statement

No potential conflict of interest was reported by the authors.

References

  1. Aktaş, B., Mehtap, K. and Yıkmış, A.. 2020. Transition planning and transition services in special education. Ankara University Faculty of Educational Sciences Journal of Special Education, 21, 149–170. [Google Scholar]
  2. American Psychiatric Association . 2013. Diagnostic and statistical manual of mental disorders: DSM-5. (Vol. 10). Washington, DC: Author. [Google Scholar]
  3. Barron, D. A., Molosankwe, I., Romeo, R. and Hassiotis, A.. 2013. Urban adolescents with intellectual disability and challenging behaviour: Costs and characteristics during transition to adult services. Health & Social Care in the Community, 21, 283–292. [DOI] [PubMed] [Google Scholar]
  4. Bigby, C. 1996. Transferring responsibility: The nature and effectiveness of parental planning for the future of adults with intellectual disability who remain living at home until mid-life. Journal of Intellectual & Developmental Disability, 21, 295–312. [Google Scholar]
  5. Bigby, C. 2010. A five‐country comparative review of accommodation support policies for older people with intellectual disability. Journal of Policy and Practice in Intellectual Disabilities, 7, 3–15. [Google Scholar]
  6. Braddock, D. 2002. Disability at the dawn of the 21st century and the state of the state. Washington, DC: American Association on Mental Retardation. [DOI] [PubMed] [Google Scholar]
  7. Braddock, D., Emerson, E., Felce, D. and Stancliffe, R. J.. 2001. Living circumstances of children and adults with mental retardation or developmental disabilities in the United States, Canada, England and Wales, and Australia. Mental Retardation and Developmental Disabilities Research Reviews, 7, 115–121. [DOI] [PubMed] [Google Scholar]
  8. Braddock, D., Hemp, R., Rizzolo, M. C., Tanis, E. S., Haffer, L., Lulinski, A. and Wu, J.. 2013. State of the states in developmental disabilities, 2013: The great recession and its aftermath. Washington, DC: American Association on Intellectual and Developmental Disabilities. [Google Scholar]
  9. Brault, M. W. 2012. Americans with disabilities: 2010 (pp. 1-23). U.S. Department of Commerce, Economics and Statistics Administration, U.S. Census Bureau. https://www.census.gov/library/publications/2012/demo/p70-131.html
  10. Chan, J. M., Lambdin, L., Graham, K., Fragale, C. and Davis, T.. 2014. A picture-based activity schedule intervention to teach adults with mild intellectual disability to use an iPad during a leisure activity. Journal of Behavioral Education, 23, 247–257. [Google Scholar]
  11. Chou, C. 2002. Developing the e-Delphi system: A web-based forecasting tool for educational research. British Journal of Educational Technology, 33, 233–236. [Google Scholar]
  12. Creswell, J. W. 2007. Qualitative enquiry and research design: Choosing among five approaches. London: Sage Publications. [Google Scholar]
  13. Delbecq, A. L., Van de Ven, A. H. and Gustafson, D. H.. 1975. Group techniques for program planning: A guide to nominal group and Delphi processes. Middleton, Wisconsin: Scott, Foresman and Company. [Google Scholar]
  14. Eliçin, Ö. and Kaya, A.. 2016. Effectiveness of tablet computer use in achievement of playing game skills by adults with intellectual disabilities using direct instruction method. Bogazici University Journal of Education, 33, 1–19. https://dergipark.org.tr/tr/pub/buje/issue/29693/365709 [Google Scholar]
  15. Erickson, W., Lee, C., and von Schrader, S.. 2020. 2018 disability status report: United States. Cornell University Yang-Tan Institute on Employment and Disability (YTI). https://www.disabilitystatistics.org/StatusReports/2018-PDF/2018-StatusReport_US.pdf
  16. Essex, E. L., Seltzer, M. M. and Krauss, M. W.. 1997. Residential transitions of adults with mental retardation: Predictors of waiting list use and placement. American Journal of Mental Retardation: AJMR, 101, 613–629. https://pubmed.ncbi.nlm.nih.gov/9152476/ [PubMed] [Google Scholar]
  17. Fish, L. S. and Busby, D. M.. 2005. The Delphi method. In: Sprenkle D. H. and Piercy F. P., ed. Research methods in family therapy. New York: The Guilford Press, pp.238–253. [Google Scholar]
  18. Foley, K. R., Dyke, P., Girdler, S., Bourke, J. and Leonard, H.. 2012. Young adults with intellectual disability transitioning from school to post-school: A literature review framed within the ICF. Disability and Rehabilitation, 34, 1747–1764. [DOI] [PubMed] [Google Scholar]
  19. Gordon, T. J. 1994. The Delphi method. Futures Research Methodology, 2, 1–30. http://www.gerenciamento.ufba.br/downloads/delphi_method.pdf [Google Scholar]
  20. Hamilton, D., Sutherland, G. and Iacono, T.. 2005. Further examination of relationships between life events and psychiatric symptoms in adults with intellectual disability. Journal of Intellectual Disability Research: JIDR, 49, 839–844. [DOI] [PubMed] [Google Scholar]
  21. Harris, J. C. 2006. Intellectual disability: Understanding its development, causes, classification, evaluation, and treatment. New York: Oxford University Press. [Google Scholar]
  22. Heller, T. and Arnold, C. K.. 2010. Siblings of adults with developmental disabilities: Psychosocial outcomes, relationships, and future planning. Journal of Policy and Practice in Intellectual Disabilities, 7, 16–25. [Google Scholar]
  23. Helms, C., Gardner, A. and McInnes, E.. 2017. The use of advanced web‐based survey design in Delphi research. Journal of Advanced Nursing, 73, 3168–3177. [DOI] [PubMed] [Google Scholar]
  24. Independence, Inc . 2020. Services. https://independenceinc.org/
  25. Jokinen, N. S., Janicki, M. P., Hogan, M. and Force, L. T.. 2012. The middle years and beyond: Transitions and families of adults with Down syndrome. Journal on Developmental Disabilities, 18, 59–69. https://oadd.org/wp-content/uploads/2012/01/41012_JoDD_18-2_59-69_Jokinen_et_al.pdf [Google Scholar]
  26. Kaya, A. and Cavkaytar, A.. 2022. Development of a daily living education program for individuals with intellectual disabilities under protective care. Rehabilitation Research, Policy, and Education, 35, 280–297. [Google Scholar]
  27. Kim, S., Larson, S. A. and Lakin, K. C.. 2001. Behavioural outcomes of deinstitutionalization for people with intellectual disability: A review of U.S. studies conducted between 1980 and 1999. Journal of Intellectual & Developmental Disability, 26, 35–50. [Google Scholar]
  28. King, G., Law, M., King, S., Rosenbaum, P., Kertoy, M. K. and Young, N. L.. 2003. A conceptual model of the factors affecting the recreation and leisure participation of children with disabilities. Physical & Occupational Therapy in Pediatrics, 23, 63–90. [PubMed] [Google Scholar]
  29. Krauss, M. W., Seltzer, M. M. and Jacobson, H. T.. 2005. Adults with autism living at home or in non-familial settings: Positive and negative aspects of residential status. Journal of Intellectual Disability Research, 49, 111–124. [DOI] [PubMed] [Google Scholar]
  30. Krippendorff, K. 2004. Content analysis: An introduction to its methodology. California: Sage Publications. [Google Scholar]
  31. Lakin, K. C., Prouty, R., Polister, B. and Coucouvanis, K.. 2003. Change in residential placements for persons with intellectual and developmental disabilities in the USA in the last two decades. Journal of Intellectual & Developmental Disability, 28, 205–210. [Google Scholar]
  32. Landmark, L. J., Ju, S. and Zhang, D.. 2010. Substantiated best practices in transition: Fifteen plus years later. Career Development for Exceptional Individuals, 33, 165–176. [Google Scholar]
  33. Larson, S. A., Salmi, P., Smith, D., Anderson, L. and Hewitt, A. S.. 2013. Residential services for persons with intellectual or developmental disabilities: Status and trends through 2011. Minneapolis: University of Minnesota. [Google Scholar]
  34. Lemay, R. A. 2009. Deinstitutionalization of people with developmental disabilities: A review of literature. Canadian Journal of Community Mental Health, 28, 181–194. https://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.513.3281&rep=rep1&type=pdf [Google Scholar]
  35. Maulik, P. K., Mascarenhas, M. N., Mathers, C. D., Dua, T. and Saxena, S.. 2011. Prevalence of intellectual disability: A meta-analysis of population-based studies. Research in Developmental Disabilities, 32, 419–436. [DOI] [PubMed] [Google Scholar]
  36. McKenzie, K., Milton, M., Smith, G. and Ouellette-Kuntz, H.. 2016. Systematic review of the prevalence and incidence of intellectual disabilities: Current trends and issues. Current Developmental Disorders Reports, 3, 104–115. [Google Scholar]
  37. Miles, M. B. and Huberman, A. M.. 1994. Qualitative data analysis: An expanded sourcebook. 2nd ed. California: Sage Publications. [Google Scholar]
  38. Nepo, K., Tincani, M. and Axelrod, S.. 2021. Teaching mobile device-based leisure to adults with autism spectrum disorder and intellectual disability. Focus on Autism and Other Developmental Disabilities, 36, 83–94. [Google Scholar]
  39. Parmenter, T. R. 2011. Promoting training and employment opportunities for people with intellectual disabilities: International experience. Geneva International Labour Office, Employment Sector, Skills and Employability Department. [Google Scholar]
  40. Parmenter, T. R. and Knox, M.. 1991. The post-school experiences of young people with a disability. International Journal of Rehabilitation Research, 14, 281–291. [DOI] [PubMed] [Google Scholar]
  41. Patel, D. R., Apple, R., Kanungo, S. and Akkal, A.. 2018. Intellectual disability: Definitions, evaluation and principles of treatment. Pediatric Medicine, 1, 11. [Google Scholar]
  42. Rogers, N. B., Hawkins, B. A. and Eklund, S. J.. 1998. The nature of leisure in the lives of older adults with intellectual disability. Journal of Intellectual Disability Research, 42, 122–130. [DOI] [PubMed] [Google Scholar]
  43. Seltzer, M. M., Floyd, F., Song, J., Greenberg, J. and Hong, J.. 2011. Midlife and aging parents of adults with intellectual and developmental disabilities: Impacts of lifelong parenting. American Journal on Intellectual and Developmental Disabilities, 116, 479–499. [DOI] [PMC free article] [PubMed] [Google Scholar]
  44. Statistics: Turkey Ministry of National Education . 2020. National Education Statistics Formal Education 2019/2020 (ISSN 1300-0993). http://sgb.meb.gov.tr/meb_iys_dosyalar/2020_09/04144812_meb_istatistikleri_orgun_egitim_2019_2020.pdf
  45. Taylor, J. L. and Hodapp, R. M.. 2012. Doing nothing: Adults with disabilities with no daily activities and their siblings. American Journal on Intellectual and Developmental Disabilities, 117, 67–79. [DOI] [PubMed] [Google Scholar]
  46. Turkey General Directorate of Disabled and Elderly Services . 2021. Engelli bireylere ilişkin istatistiki bilgiler [Statistical information on disabled individuals]. https://www.aile.gov.tr/media/81779/eyhgm_istatistik_bulteni_mayis_2021.pdf
  47. Turkish Ministry of National Education . 2018. Special education services regulation. http://orgm.meb.gov.tr/meb_iys_dosyalar/2012_10/10111226_ozel_egitim_hizmetleri_yonetmeligi_son.pdf
  48. Turnbull, H. R. 2005. Individuals with Disabilities Education Act reauthorization: Accountability and personal responsibility. Remedial and Special Education, 26, 320–326. [Google Scholar]
  49. United Nations . 2006. Convention on the Rights of Persons with a Disability. http://www.un.org/esa/socdev/enable/rights/convtexte.htm
  50. Vilaseca, R., Gràcia, M., Beltran, F. S., Dalmau, M., Alomar, E., Adam‐Alcocer, A. L. and Simó‐Pinatella, D.. 2017. Needs and supports of people with intellectual disability and their families in Catalonia. Journal of Applied Research in Intellectual Disabilities: JARID, 30, 33–46. [DOI] [PubMed] [Google Scholar]
  51. Wehmeyer, M. and Schwartz, M.. 1998. The relationship between self-determination and quality of life for adults with mental retardation. Education and Training in Mental Retardation and Developmental Disabilities, 33, 3–12. http://supporteddecisionmaking.org/sites/default/files/relationship_between_self-determination_quality_of_life.pdf [Google Scholar]
  52. Wehmeyer, M. L. and Bolding, N.. 2001. Enhanced self-determination of adults with intellectual disability as an outcome of moving to community-based work or living environments . Journal of Intellectual Disability Research: JIDR, 45, 371–383. [DOI] [PubMed] [Google Scholar]
  53. Williamson, H. J. and Perkins, E. A.. 2014. Family caregivers of adults with intellectual and developmental disabilities: Outcomes associated with U.S. services and supports. Intellectual and Developmental Disabilities, 52, 147–159. [DOI] [PubMed] [Google Scholar]
  54. Woodman, A. C., Mailick, M. R., Anderson, K. A. and Esbensen, A. J.. 2014. Residential transitions among adults with intellectual disability across 20 years. American Journal on Intellectual and Developmental Disabilities, 119, 496–515. 10.1352/1944-7558-119.6.496 [DOI] [PMC free article] [PubMed] [Google Scholar]

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