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Self-determination and family
Title: Self-determination: Adults with intellectual disability
and their family
Running Header: Self-determination and family
Authors: Bernadette Curryer (1)
Roger J Stancliffe (1)
Angela Dew (2)
Affiliations:
1. Centre for Disability Research and Policy, Faculty of Health Sciences, The University of
Sydney, Lidcombe, Australia
2. Faculty of Health Sciences, The University of Sydney, Lidcombe, Australia
Address for correspondence:
Bernadette Curryer, Centre for Disability Research and Policy, Faculty of Health Sciences, The
University of Sydney, PO Box 170, Lidcombe, NSW 1825, Australia.
E-mail: bcur3628@uni.sydney.edu.au
Keywords: intellectual disability, self-determination, family, adult, individual funding, National
Disability Insurance Scheme
Word Count: 3943 (including references)
Author Note:
Self-determination and family
a) I wish to request that the attached Opinion and Perspective manuscript be considered for
publication in the Journal of Intellectual & Developmental Disability.
b) This manuscript has not been published or submitted elsewhere. No similar manuscript
has been published or submitted elsewhere.
c) Ethics procedures have been followed
d) No research funding was received.
e) All authors have contributed, seen and approved of the manuscript and the inclusion of
their name as per the title page.
Self-determination and family
Self-determination: Adults with Intellectual Disability and
their Family
Adults with intellectual disability are increasingly being encouraged to take control of their lives
through a range of goal-setting, choice and decision-making opportunities. The current objective
of government-funded disability support is to provide services which recognise the needs of the
individual and respond to the support preferences identified in a person-centred planning
process. An ideal construct to support these rights is self-determination, that is “acting as the
primary causal agent in one’s life and making choices and decisions regarding one’s quality of
life free from undue external influence or interference” (Wehmeyer, 2003, p. 177). It is
recognised that there is a continuum of support for self-determination among families, and that
some families work hard to empower their family member with intellectual disability. However,
other families tend to view their role as one of protection and believe they know what is best for
the individual. They may experience difficulty coming to terms with their role as a supporter of
self-determination, particularly if they have a conflicting view of some of the life choices being
made by their adult family member with intellectual disability.
Contemporary policies and services
There is growing recognition, at international, national and state government levels, of the right
of people with disabilities to take control of their lives. The United Nation’s Convention on the
Rights of Persons with Disabilities (UN CRPD)(United Nations, 2006) has been ratified by many
countries, including Australia in 2008. The convention supports the rights and freedom of people
Self-determination and family
with disability, promoting individual autonomy, independence, choice making and decision
making. Within Australia, the National Disability Insurance Scheme (NDIS), currently in the
early trial stage, proposes the use of person-centred planning and individualised funding to
identify and meet the needs and preferences of the individual. A guiding principle of the NDIS
recognises that individuals with a disability “have the same right as others to develop, pursue
their goals, participate in society, have respect and dignity, exercise choice and control, be equal
partners in decisions that affect their lives” (Disability Care Australia, 2013, p. 16). The revised
Australian National Standards for Disability Services specifically recognise the right of an
individual with a disability “to make decisions about and exercise control over their own lives”
(Department of Social Services, 2013, p. 11). Recent New South Wales (NSW) state government
programs, such as the Supported Decision Making Pilot project (Ageing Disability & Home
Care, 2013), My Choice Matters (NSW Consumer Development Fund, 2014) and Living Life
My Way Framework (Ageing Disability & Home Care, 2014) all had the stated objective of
supporting the decision making of people with disabilities, helping them to have more choice and
control in their lives.
Issues of concern
Despite the aspiration for choice and control espoused within the UN CRPD and Australian
disability policies, the reality for many adults with intellectual disability is different. Both adults
with intellectual disability and families have identified barriers to choice and control. Barriers
identified by adults with intellectual disability include over-protective parents (Haigh et al.,
2013; Jahoda & Markova, 2004; Shogren & Broussard, 2011), the need to constantly prove one’s
Self-determination and family
ability (Jahoda & Markova, 2004) and support that is not responsive to actual needs (Shogren &
Broussard, 2011). In contrast, the barriers identified by families focus on concerns about the
person’s vulnerability and limited decision-making capacity, skill level and awareness of
consequences (Mitchell, 2012; Murphy, Clegg, & Almack, 2011; Power, 2008; Saaltink,
MacKinnon, Owen, & Tardif-Williams, 2012; van Hooren, Widdershoven, Borne, & Curfs,
2002; van Hooren, Widdershoven, van der Bruggen, van den Borne, & Curfs, 2005), the
complexity and risk involved in choice making (Mitchell, 2012), the belief that the family is
responsible for the protection of, and know what is best for, the individual (Bianco, Garrison-
Wade, Tobin, & Lehmann, 2009; Dyke, Bourke, Llewellyn, & Leonard, 2013; Foley, 2013; Knox
& Bigby, 2007; Mitchell, 2012; Saaltink et al., 2012), and the need for decisions to be in line
with family values and norms (Saaltink et al., 2012). These different perspectives and concerns
have the potential to create an environment in which the family may feel unsure as to how, or
whether they should support self-determination.
Choice and decision-making is a key component of self-determination (Wehmeyer, 2003). For
most people, decision-making is usually an interdependent process, where advice is sought,
options discussed and a decision reached, with assistance given informally by family and friends
or at times more formally by professionals such as a lawyer (Bach, 2009). Similarly, people
with intellectual disability may require assistance, most of which “should be informal, given in
the context of valuing personal relationships in their lives, in regular communities where they are
known and valued as contributing members"(Bach, 2009, p. 14). The natural authority of the
family, a concept discussed by Kendrick (1996), recognises the appropriateness of family being
involved in the decision-making of family members with intellectual disability, particularly to
Self-determination and family
counterbalance the power of authority figures such as government agencies and disability service
providers.
However, in some cases the influence of family goes beyond providing support in the decision-
making process. Individuals with intellectual disability may be actively persuaded to make
decisions based on family values rather than personal preferences (Saaltink et al., 2012). Some
families are so convinced that they know what is best, that the individual may have little
involvement in decision making (Dyke et al., 2013; Knox & Bigby, 2007). Parents may even
take on the role of unauthorised decision makers (Foley, 2013), making decisions and over-ruling
the choices of adult children, as observed during some service planning meetings (Pilnick, Clegg,
Murphy, & Almack, 2011). The level of parental involvement may vary dependent on the
complexity of the issue. For example, parents may intervene less when decisions are about
simple activities of daily life such as what to eat or which clothes to wear (Mitchell, 2012;
Saaltink et al., 2012). When it comes to more complex issues such as where to live, health care
decisions, or money management, parents may seek to have substantially more influence.
Decisions around more controversial issues such as expression of sexuality and relationships are
even more likely to be controlled by the family (Foley, 2013; Power, 2008).
Despite these challenges, family relationships for adults with intellectual disability remain
important. Research has confirmed this importance from the perspective of the individual with
intellectual disability (Haigh et al., 2013; Walmsley, 1996; Ward, Heslop, Mallett, & Simons,
2003) as well as the family (Dyke et al., 2013; Hillman, Donelly, Dew, et al., 2012; Hillman,
Donelly, Whitaker, et al., 2012). The UN CRPD acknowledges the importance of the family and
the need to assist families to undertake their role in supporting rights (United Nations, 2006).
Similarly, the NDIS has recognised the essential supporting role that the family of an individual
Self-determination and family
with disability plays in enabling their family member to exercise increased choice and control in
their life, describing them as partners (National Disability Insurance Scheme, 2013b). The
maintenance of positive family relationships appears important to all stakeholders. However,
there is a lack of research on the impact on family relationships of adults with disability taking
more control over life decisions. How will relationships be negotiated within this changing
environment, recognising the rights of the adult, the concerns of the family, and the need for
ongoing family support?
Why is support for self-determination important now?
In Australia, the introduction of the NDIS is an ideal catalyst for engaging parents of adults with
intellectual disability in the concept of self-determination. As described in the tripartite
ecological theory of self-determination (Abery & Stancliffe, 2003), self-determination involves
individuals taking control of, to the degree that they want, aspects of life that they view as
important and requires a combination of skills, knowledge and attitudes. Acquisition of these
attributes can be assisted through increased opportunities for real-life decision making with
provision of appropriate support (Wehmeyer, 2003). For example, regular opportunities to make
financial decisions have a direct relationship with strengthening both financial decision-making
capability and basic financial skills (Suto, Clare, Holland, & Watson, 2005). This finding
highlights the importance of providing skill development together with experiential opportunities
to maximise decision-making capability.
For many young people without disability in western society there is a period of transition from
adolescence to independent adulthood which is characterised by a diversity of experiences,
Self-determination and family
identity exploration and increased risk taking. This period, which typically occurs between the
ages of 18 and 25 years, has been described by Arnett (2000) as emerging adulthood. It is during
this period that many people first move away from the family home, experiment with different
lifestyles, attempt tertiary education, seek employment and become financially independent.
Although each individual’s transition to adulthood is different, experiences such as these are
believed to assist in the development of self-sufficiency and may influence the development of
self-determination in areas such as relationships and careers.
It follows that if young adults with intellectual disability are not encouraged and supported to
undertake diverse experiences they may have a limited awareness of their life options and
preferences. If parents continue to take responsibility for matters such as accommodation,
transport, financial management and service support co-ordination, the family member with
intellectual disability may unintentionally be denied the practical decision-making experiences
that contribute to decision-making competence and confidence (Suto et al., 2005). As could be
expected from the theory of emerging adulthood (Arnett, 2000), adults with intellectual disability
who move into a home of their own as either owner or renter, usually exercise more choice than
those in other living situations, including those who remain living with family (Ticha et al.,
2012). For adults who remain living with family, one challenge is to find effective ways to
promote self-determination, while recognising the inevitability of shared-decision making about
common issues between any group of individuals sharing a home (Kishi, Teelucksingh, Zollers,
Parklee, & Meyer, 1988).
The provision of information, advice and opening up new options in the choice-making process
is important. While the person with the intellectual disability should be the one to make the final
decision whenever possible, they must be “afforded a process whereby the person is exposed,
Self-determination and family
through a genuine dialogue, to matters or aspects that do not necessarily originate with the
client” (Kendrick, 2002, p. 8). The role of the family in supporting such exploration of life
options is particularly important because many adults with intellectual disability continue to live
with parents for longer than their peers without a disability (Heller et al., 2011) often staying in
the family home as their parents age, and becoming increasingly reliant on siblings (Hewitt,
Agosta, Heller, Williams, & Reinke, 2013). It is essential that these key people are skilled in
supporting the choice and decision-making of their family member with intellectual disability.
Without an awareness of the impact their actions may have, and without the use of suitable self-
determination development strategies, there is a chance that the family may, intentionally or not,
undermine the development of self-determination.
The Australian government has acknowledged the need to prepare individuals with disability,
their family, carers and the disability service sector for the transition to individualised, self-
directed funding and to support individuals with disability to exercise choice and control
(National Disability Insurance Scheme, 2013a). Programs have been funded to meet this need,
however none of these programs focus on the possible effect that this new funding structure may
have on the relationship between an adult with intellectual disability and their family. While
some research has been undertaken to examine the development of self-determination in
children, little is known about facilitating self-determination in adults (Heller et al., 2011). Even
less is known about the influence of family on self-determination of adults with disability
(Wehmeyer, 2014). This lack of family perspective was demonstrated by Algozzine, Browder,
Karvonen, Test, and Wood (2001) in their review of studies which measured the effect of self-
determination interventions for individuals with disability. Almost all of the reviewed studies
focussed on interventions undertaken by teachers, disability support staff, or researchers. Of the
Self-determination and family
51 studies reviewed, only five included parents in any way, and none involved parents of adults
who had left school.
What needs to be done?
We need to better understand the impact of the family environment and the role of family in
developing self-determination in adults (Wehmeyer, 2014). In particular, more research is needed
to understand the lived experiences of adults with intellectual disability and their families as they
attempt to come to terms with the greater level of personal control being promoted in the current
environment. NDIS-based individualised planning and an increased focus on individual choice
making may place additional stress on the relationship between the individual and their family,
particularly if their views are not congruent.
For people who experience difficulty in decision-making, effective support is required to ensure
their voice in decision-making situations is heard. While the presence of an intellectual disability
may result in decision-making difficulties, this does not automatically mean that the individual
cannot make decisions about their life. Assumption of ‘legal capacity’ should be the default
position, with the views of the individual the main consideration (Fogarty, 2009). In line with the
UN CRPD, a formalised system of supported decision-making is being considered by some
governments as an alternative to the substitute decision-making of guardianship (Devi, 2013;
Kohn & Blumenthal, 2014). Although an examination of such a policy change is beyond the
scope of this article, some of the underlying principles may assist in guiding the informal choice
and decision-making support families provide in everyday situations. These principles include a
recognition of the right to self-determination, acceptance that decisions should be based on the
Self-determination and family
intent of the individual and commitment to the provision of decision-making assistance (Bach,
1998). Such assistance should be based on the specific support needs of the individual and may
include help with the formulation of options and the making of the decision, followed by support
to communicate and implement the decision (Bach & Kerzner, 2009).
Conclusion
The development of the capacity of families to support their adult family member with
intellectual disability within a framework of self-determination is crucial. If some families
continue to believe that they know what is best for their family member and feel responsible for
their protection, it is unclear how increased control for the individual will be achieved in these
families. How are the rights of the individual to make their own choices balanced with the
concerns of the family? This question is particularly relevant in complex situations, where risk is
involved or when the preference of the individual may fall outside of the norms and values of the
family. While the benefit of ongoing family involvement in the life of adults with intellectual
disability is acknowledged, it is unclear what level of restriction this brings. How do variables,
such as whether the adult with intellectual disability continues to live in the family home, affect
the level of autonomy the individual is able to achieve? There is a need to explore the current
level of understanding of the concept of self-determination by families and how their actions
impact on their family member’s acquisition of the necessary skills and attitudes required for
self-determination. This knowledge will identify skill gaps and inform the development of
suitable support strategies. The tripartite ecological theory of self-determination (Abery &
Stancliffe, 2003) together with the theory of emerging adulthood (Arnett, 2000) may well serve
Self-determination and family
as suitable theoretical frameworks for understanding how families can move on from anxiety-
based or paternalistic control to support for the preferences and life choices of the individual.
Under the individualised funding model of the NDIS, Australian disability service providers will
relinquish much of their current control over their service users. However, we need to ensure that
this control does not bypass the individual with intellectual disability and land solely in the hands
of family, some of whom may be either unable or unwilling to help their family member become
more self-determined.
Conflict of Interest
None
Self-determination and family
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