Support and Services
Proceed With Caution: Limitations
of Current Parenting Capacity Assessments (2001)
Relationships and Social Support: Views of Parents
with Mental Retardation/Intellectual Disability (1995)
Living Proof: Being a Parent with Intellectual Disability
(1993)
Parenting: A Neglected Human Occupation. Parents'
Voices Not Yet Heard (1994)
Parents with Intellectual Disability: Support and
Services Required by Parents with Intellectual Disability
(1995)
Look at
Me, Listen to Me, I Have Something Important
to Say (2002)
For an elaboration of this plan and a reading of this
father's experiences, see Strike, R., & McConnell,
D. (2002) Look At Me, Listen to Me, I Have Something
Important to Say Sexuality and Disability, 20
(1), 53 - 63.
This paper, told from the perspective of a father
with intellectual disability, outlines a seven-point
plan
for workers supporting parents with intellectual
disabilities. Both the father's experiences growing
up and living
with intellectual disability, and his recommendations
for those working with people with disability, provide
useful insights for anyone supporting or working with
people with intellectual disabilities.
In summary, the seven-point plan is as follows:
- Look beyond the disability label.
- Talk to us, NOT at us, nor through others.
- Hearing is not enough. LISTEN to us and RESPECT
what we say.
- Do things with us, not for us.
- Explain things slowly and get straight to the point.
- Talk to us face to face.
- Be honest with us.
Parents with Intellectual Disability: Just the Same,
Only Different (2002)
Strike, J., & McConnell, D. (2002) Parents with
Intellectual Disability: Just the Same, Only Different Interaction 15
(4), 11 - 15.
With parenthood now being a realistic aspiration for
people with intellectual disability, an increasing
number
are fulfilling their desire to have children. A recent
SBS television program, Insight, featured the experiences
of four parents with intellectual disability. The families
shown included a couple who just gave birth to their
first child; a mother whose child has always been in
foster care; a couple with three children, two of whom
were removed and later restored to their care; and
another
couple with three children in their care.
From this and their own research and experience, the
authors explored some of the ways in which parents with
intellectual disability are just the same as any other
parents, as well as some of the ways in which their
experiences are more extra-ordinary.
The common theme that emerged from their analysis was
that "parents with intellectual disability are
just the same, only different".
Parents with intellectual disability were found to
be the same as any other parent group in so far as:
- Wanting to experience a loving relationship and
raise children
- Finding that parenthood comes with trials and joys
- Having to learn how to parent well - experientially
and from others
- Some succeeding, others faltering
However, parents with intellectual disability also
encounter extra-ordinary experiences:
- Having to contend with the concerns, opposition,
and scrutiny of others, this at times being to the
extent of being advised to give their newborn up for
adoption. Rather than the news of their pregnancy
being cause for celebration, many parents with intellectual
disability are discouraged and unsupported in their
decision to have and keep their child. The doubt that
they 'can do it' can easily be internalised.
- Restricted learning opportunities during childhood
often lead to learnt dependency, and parents may continue
to rely on others to make decisions and do things
for them.
- Limited support networks.
- Fear derived from the fact that one in three children
born to parents with intellectual disability are removed.
Research has shown that in this process parents are
subject to prejudicial views (eg., that parents with
intellectual disability are unable to learn, adapt
and overcome parenting difficulties; that intellectual
disability per se is the cause of perceived parenting
problems and cannot be 'fixed') and are placed in
the hands of ill equipped child protection workers
and legal representatives. In turn, parental non-compliance
may become an issue, where parents suspicious of professionals,
are wary of seeking help and reluctant to engage with
services.
In spite of these extra-ordinary experiences and with
great resilience, many parents with intellectual disability
and their children are thriving. A new way of working
with this client group that counters these experiences
can be adopted so as to make the parenting road one
that many more are able to embark and stay on. At the
heart of this approach is:
- A belief that these parents can succeed;
- A focus on personal growth as opposed to skill acquisition;
- A readiness to learn from them;
- A commitment to a person-centred approach in which
the parents participate in setting the agenda;
- A flexible and responsive program, allowing parents
to participate on their own terms and learn at their
own pace; and
- A focus on peer mentoring and narrative learning,
that is, by ways of stories shared.
Mothers with Learning Difficulties
and their Support Networks (2002)
This research was funded by an Australian Research
Council (ARC) grant and a University of Sydney (Faculty
of Health Sciences) grant. For a complete reading of
the study, see Llewellyn, G. & McConnell, D. (2002)
Mothers with Learning Difficulties and their Support
Networks Journal of Intellectual Disability Research, 46
(1), 17 - 34.
Background
Mothers with intellectual disability are regarded as
the most socially isolated group of parents in our community.
Within this context however, little attention has been
paid to the support that these mothers may or may not
receive from family, friends and the service system.
Aim
This study aims to build on preliminary research into
the nature of support networks of parents with intellectual
disability. Specific objectives were:
- to identify whom mothers turn to for support;
- to test the hypothesis that support network characteristics
will vary with mothers' household living arrangements;
- to examine the relationship between support network
characteristics and sources of support i.e. family
members, formal ties and significant others (friends
and neighbours);
- to examine whether the characteristics of the support
provided by formal ties, family members and significant
others varies with mothers' household living arrangements;
and
- to examine the relationships between support network
characteristics
Methodology
70 mothers with learning difficulties and with preschool-aged
children (i.e. < 6 years) were interviewed. A support
interview guide was used, and the resulting identified
496 supportive ties analysed in terms of the 5 objectives.
Findings and Implications
The research findings support and build upon those
identified from the authors' 1999 study:
- Family members were found to be central to the support
networks of mothers with intellectual disability;
- Service providers were identified as being the second
largest group of supportive ties, providing mothers
with primarily information support and advice;
- Mothers identified few supportive ties with friends
and neighbours. One in four in fact identified no
such ties;
- Mothers' support networks were shown to vary considerably
according to their household living arrangement. Generally,
mothers living alone with their children had widely
dispersed family ties and accessed service centred
supports. In contrast, mothers living in a parent
household primarily had stable, local family centred
supports. Those living with their partners had a high
proportion of relatively dispersed family ties.
- Mothers living alone were the most socially isolated
and the most at risk given their heavy reliance on
service workers who did not remain constant in their
provision of support.
Implications for those working with mothers with intellectual
disability are as follows:
- Service providers can promote stable, long term
support networks by providing opportunities to establish
and develop supportive ties with neighbours and friends.
This is of particular importance for those mothers
living alone.
- To facilitate participation and belonging in the
community, practitioners can engage mothers living
in a parent/parent figure's household in activities
outside the family home
- Service providers need to be sensitive to mothers'
living arrangements when considering the nature of
their intervention
Proceed With Caution: The Limitations
of Current Parenting Capacity Assessments (2001)
Spencer, M. (2001) Proceed with Caution: The Limitations
of Current Parenting Capacity Asessments Developing
Practice, Winter, 16 - 24.
Parental capacity assessments play a big part in what
happens for families, particularly families in which
a parent or parents have an intellectual disability.
Generally requested for two reasons - to inform and
to justify intervention - assessment outcomes however,
can be problematic. This is because what is being assessed
- parenting and family life - are essentially subjective
and dynamic, and therefore open to many variables.
There are multiple limitations inherent in current
parenting capacity assessments which have serious implications
for families headed by parents with a disability. These
are:
- Poor Conceptualization of Parenting
Workers undertaking assessments lack clear definitions
as to "what is parenting?" and "what
is good enough parenting?". Without clarity and
consensus on these questions, parenting capacity is
open to debate and likely to be seen through a normative
lens. This has particular implications for parents
with intellectual disability whose lives and life
experience often place them outside the norm. For
example, their generally interdependent functioning,
in being in stark contrast to the normative individualized
and independent view of parenting, may be negatively
judged and viewed as an example of their incompetence.
- An Inappropriate Use of Assessment Tools
- Currently there is no standard means of assessing
parenting capacity
- There is also no one comprehensive assessment
tool available
- What is used depends on the qualifications and
experience of those undertaking the assessment and
the economic and time constraints on the assessment
process
- Often assessment instruments are developed and
applied without due consideration to the purpose
and uses of the test
- Some of these tools have not been psychometrically
evaluated nor been standardized on parents with
intellectual disability. As such, they would be
invalid and unreliable in their interpretation
- Over-reliance on IQ Testing
- Despite intelligence assessment per se having
been shown to be a poor predictor of parenting capacity,
IQ testing nevertheless remains as the common measure
used to assess parents' with intellectual disability
fitness to parent
- Although IQ testing can provide information on
adult adjustment problems and capabilities, these
measures are not designed to evaluate competence
in parenting
- Moreover, IQ testing tends to be summarized and
interpreted through a single composite measure.
The danger of this is that an IQ score is treated
as a unitary concept rather than as a reflection
of performance over a range of tasks
- In child protection cases involving parents with
intellectual disability, decisions are made on the
basis of IQ scores that are ill-informed and at
times mischievous and unjust
- A preoccupation remains with the parent's intellectual
disability as the reason for any difficulty in parenting,
over and above other factors such as poverty, emotional
distress, social isolation and harassment
- Assessments Undertaken in Inappropriate Contexts
and Circumstances
- Ideally, assessment should take place in the family's
own home and environment. However, due to time constraints
and the fact that assessments are commonly conducted
by psychologists and psychiatrists who work in clinical
settings, home-based assessments are more the exception
than the rule
- For parents with intellectual disability, the
conditions under which they are assessed will have
a significant bearing on their performance and not
truly represent their usual parenting behaviour.
This is particularly the case when the stakes are
high eg., in cases where assessment findings will
determine whether children will stay at home or
be placed in care
- Lack of Predictive Validity
- Commonly, predictions about parenting capability
are based on correlation of risk factors to parenting
capacity. Given that risk assessment protocols are
based on items correlated but not causally linked
to child maltreatment in "at risk" populations
this is clearly poor practice with no empirical
basis
- Predictive claims also fail to respect the dynamic
nature of parenting and the multiple factors that
can influence child-rearing practices
- In cases involving parents with intellectual disability
predictions often are based on prejudicial beliefs
about parents with intellectual disability; such
as they can't learn, that the children will end
up parenting the parent; or that parents with intellectual
disability abuse and neglect their children - none
of which are legitimate or factual
- Failure to Link Assessment Findings to Intervention
- In responding to the question of whether a parent
is or is not capable of parenting, important insights
into how a parent functions or may learn best get
lost and fail to be translated into specific recommendations
about how and what supports need to be put in place
Within the context of these limitations, assessment
needs to take place in accordance with the following
principles:
- Conditions
Assessments need to be
- Purposeful i.e. both the referrer and the assessor
need to clarify and be clear about what is wanted
from the assessment
- Carried out by an independent professional who
does not have divided loyalties or biases that will
influence assessment results
- Open, transparent and consensual - parents should
be informed about what the assessment will entail
and what is expected of them. The process should
be inclusive and collaborative. It is also important
that the views of all family members and those involved
with the family are canvassed
- Methods
- Naturalistic. Assessments need to be conducted
in the family's home and community
- Conducted across time and family routine. The
assessment must take more than a snapshot of the
family. It needs to be conducted over multiple visits,
preferably at different points in the family routine
- Multidisciplinary. Regard should be given for
the expertise that a range of professionals, including
workers who provide in-home support and are involved
with the family on a regular basis, can contribute
to the assessment process
- Use valid and reliable instrumentation. Because
different tools focus on specific aspects of parenting,
professionals need to be au faux with what tools
are available; be able to access them; be proficient
in administering them; and use them in a combination
that appropriately covers all areas of parenting
- Scope
- Multi-dimensional/ecological approach. The assessment
approach needs to take account of the interplay
between the multi-systems that impact on the family
- Functional/performance base. Assessing what parents
understand, do and are capable of doing in terms
of their care responsibilities. McGaw's Parent Assessment
Model provides a useful tool that investigates different
functional dimensions of parenting
- Resources and Constraints. In addition to deficits
the assessment needs to identify strengths and potential
resources and supports that are found in the family's
environment
- Linked to therapeutic intervention and support.
Assessment findings need to be translated into intervention
strategies and inform individualized support planning
- Specific limitations reported in findings. Assessors
need to be clear about what can and cannot be concluded
from their assessments. Given the current limitations
of assessment tools and the lack of consensus regarding
minimal parenting standards, assessment findings
should be interpreted and reported conservatively
 |
Support Network Of Mothers
With An Intellectual Disability: An Exploratory Study
(1999)
A full account of this study can be found in Llewellyn,
G., McConnell, D., Cant, R., & Westbrook, M. (1999)
Support Networks of Mothers with an Intellectual Disability:
An Exploratory Study Journal of Intellectual & Developmental
Disability, 24 (1), 7 - 26.
Background
Mothers with intellectual disability are, as a group,
among the most socially isolated in Australian society.
This is of concern, particularly as it has been widely
demonstrated that the availability of social supports
directly benefits the well-being of mothers and consequently,
of their children.
Current knowledge about social supports for parents
with intellectual disability is primarily limited to
the perspective of service providers. Nor has the impact
of household living arrangements been taken into account.
Aim
This study was conducted in an attempt to develop the
beginnings of a typology of the support networks used
by mothers with intellectual disability. Five variables
were considered from the perspective of the participating
mothers: proportion of informal to formal supports,
frequency of contact, proximity, reciprocity and type
of assistance provided. Each was considered within the
context of the mothers' household type.
Methodology
25 mothers of mild to upper moderate intellectual disability
participated in the study. All had children under 6
years of age, were current users of a social service
and spoke English. Semi-structured interviews were conducted
with each participant and an analysis of the qualitative
data made.
Findings
Three distinct forms of support networks were identified
according to the mothers' living arrangements: mothers
living in a parent/parent figure household (type 1),
mothers living alone with their child/ren (type 2),
and mothers living with a partner (type 3). Each group
had approximately the same mean number of supportive
ties.
However, significant differences were found between
the support networks of types 1 and 2. Those living
in a parent/parent figure's household (8 mothers) generally
experienced frequent face-to-face contact with familial
supports of close proximity. In contrast, those living
alone with their child/ren (7 mothers) tended to use
formal, service-centred supports, though this tended
to be of a low frequency. Other supports in the form
of friends and family tended to be semi-dispersed, that
is, they were not geographically close to the mothers.
Those mothers living with a partner in their own household
(10) tended to lie between these two groups, having
used a mix of formal and informal supports that tended
to be dispersed, with a medium frequency of face to
face contact. This group also had significantly more
children and a greater fortnightly income than mothers
of categories 1 and 2.
These findings carry several implications:
- That household living arrangements critically affect
the nature of support received by mothers with intellectual
disability.
- That one should not automatically interpret the
fact that mothers living in a parent/parent figure's
household having fewer ties with professionals and
service agencies to be a positive sign of well-being.
Whether such mothers have a desire to be more independent
and part of the community needs to be considered.
- That mothers living alone experience loneliness
and depend on formal networks for emotional support,
coupled with their having less practical assistance
and fewer reciprocal relationships, requires further
investigation in terms of how support services can
best meet the needs of these women.
- That further research with a larger sample of type
3 mothers - those living with a partner in their own
household - be undertaken so as to distinguish subgroups
in this network type.
- That the perceptions of partners and the support
networks of fathers with intellectual disability also
provide the basis of future research.
|
Perception of Service Needs
by Parents with Intellectual Disability, Their Significant
Others and their Service Workers (1998)
Llewellyn, G., McConnell, D. & Bye, R (1998) Perception
of Service Needs by Parents with Intellectual Disability,
Their Significant Others and their Service Workers. Research
in Developmental Disabilities, 19 (3), 245 - 260.
Background
Studies have shown parents with intellectual disability
reluctant to access support programs such as parent
education, especially when these are perceived as being
interlinked with care and protection services. One way
of overcoming this barrier is to break the traditional
practice of professionals themselves determining course
design and content, and instead, inviting and incorporating
the views of parents. This is of particular importance
given that parents and their service workers have been
found to hold different perspectives on parents' service
needs.
Significant others - family and social networks - have
also been shown to play a critical role in the lives
of parents with intellectual disability. As such, they
too can influence parents' real and perceived support
needs.
Aim
This study sought the views of parents with intellectual
disability, their significant others and service workers
on parents' service needs in the areas of child care,
social and community living, and domestic skills.
Methodology
Using government and community service contacts, 52
parents in metropolitan and rural areas in NSW were
interviewed. Most fell within the mild to upper moderate
range of intellectual disability. Nominated significant
others and helpful service workers were asked to complete
a questionnaire pertaining to the same need areas incorporated
in the personal interviews: child care (child development,
stimulation, discipline, hygiene, medical emergencies
and home safety); domestic needs (nutrition, food shopping,
meal preparation, home cleaning and money management);
and social and community issues (assertiveness, marital
relations, vocational skills/training, using community
resources, friendships and leisure activities).
Results were analysed to determine whether there were
any differences between the perspectives of parents
and workers, and parents and significant others.
Findings & Implications
Overall, a greater percentage of workers identified
parents as needing help than did parents themselves
on the majority of items. Moreover, the perceptions
of parents, workers and significant others as to the
help parents with intellectual disability needed were
found to be significantly different.
Service providers most commonly identified needs in
the child care area - child development, discipline,
stimulation and activities. This was followed by parents
perceived to be in need of assistance using community
resources.
The most common need reported by parents was help with
child care (esp. discipline) and child development.
Activities for their children and respite were areas
they also identified as needing assistance with. Their
reported greatest unmet needs however lay in the community
participation area: exploring work options, knowing
what community services are available and how to access
them, and being assertive, meeting people and making
friends.
The authors raise the question of whether agencies
that offer vocational, social, and communication skills
training are willing and able to provide services for
parents with intellectual disability. To do so in this
way would do much to reduce the vulnerability often
experienced by this client group because of their socio-economic
position.
Interestingly, identified service needs incorporated
both parent and child-focused skill areas. Consequently,
services need to adopt a family-centred approach to
ensure that the interests of both parents and children
are served.
Parents also offered suggestions as to how support
and services should be provided:
- Be based in the parent's home;
- Focus on short-term achievable goals;
- Positively and in ways that encourage the service
user;
- Be practical and involve demonstration and repetition;
and
- Linked into mainstream services for parents and
children.
Clearly then, providing support to parents with intellectual
disability needs to extend well beyond helping them
understand and more competently raise their children.
Meeting parent-identified needs for social and community
skills remains an ongoing challenge to those agencies
working with this client group.
Parents With Intellectual Disability
and Mainstream Family Agencies (1997)
For a full review of this study, see Llewellyn, G.,
Bye, R., & McConnell, D. (1997) Parents with Intellectual
Disability and Mainstream Family Agencies International
Journal of Practical Approaches to Disability, 21
(3), 9 - 13.
Background
In the absence of social policy that addresses the
needs of parents with intellectual disability, the question
of whether mainstream or specialist disability services
are best suited to meet such needs remains. In Australia,
there are in fact very few programs specifically designed
for parents with intellectual disability, with mainstream
agencies by and large being the only potential source
of community support for this client group.
Of concern however, is the already established fact
that only a minority of mainstream family support agencies
in NSW actually provide services to parents with intellectual
disability. Twelve factors have been identified as affecting
service delivery to these parents: client knowledge
of the service, client motivation to receive services,
degree of client disability, client level of trust of
service and staff, acceptance of the client by the service
and other clients, client access to and ability to use
transport, worker skills and training, funding levels,
program content, time constraints on workers, involvement
of other services with the parents, and other agencies'
knowledge about and referral to mainstream family support
services.
Aim
This study aimed to examine which of the twelve factors
noted above were most influential in limiting service
provision, and, on the basis of the findings, to make
recommendations for policy and practice to overcome
these limitations.
Methodology
Questionnaires were mailed to coordinators of the 157
Family Support Association's member services. For each
factor, respondents were asked to indicate whether this
affected their service delivery to parents with intellectual
disability, and if so, how. They were also asked to
identify any alternative factors that were also thought
to be at work. In total, 109 (69.4%) of questionnaires
were returned and the results analysed.
Findings & Recommendations
66 (60%) services were currently working with parents
with intellectual disability. Nearly a third of service
coordinators (29.4%) indicated that they were no longer
or that they had never serviced this client group.
Of the twelve factors only five were identified by
more than 70% of respondents as significantly affecting
their ability to provide services to parents with intellectual
disability. These were
- Client motivation to receive services (82%).
This was more likely to be high when parents voluntarily
received services as opposed to being court-ordered
to do so.
- Time constraints (80.2%). Parents with intellectual
disability were often regarded as "time-consuming"
and/or generally received group work services with
minimal attention, follow up or long term support.
- General funding level (78.9%). Limited funding
severely restricted staff's ability to offer individualized
and ongoing support.
- Degree of parent's disability (77.6%). Service
providers acknowledged that they lacked the resources
to adequately meet the needs of those parents with
more severe disabilities.
- Involvement of other services (71%). Multiple
service involvement at times did not follow a cooperative
approach. Further, the criteria of some services meant
that those with intellectual disability were excluded.
Other issues highlighted by respondents were the perceived
inability of family support services to provide services
for parents with more severe disabilities or multiple
problems, and the need for additional specialist training.
Current family support service practice therefore needs
to address the constraints that hinder their effectiveness
with parents with intellectual disability. Recommendations
to assist family support agencies in this process include:
- Lobby for and target funds that allow for the provision
of individualised, ongoing and ideally, preventative
support
- Adopt an individualized service planning approach
which encourages and includes parental input
- Be as "user-friendly" to parents with
intellectual disability as possible
- Undertake training that will enhance a greater understanding
of people with intellectual disability, and that will
allow for more effective inter-agency collaboration
This study was funded as part of the Parent Support
and Services Project by the Disability Services Sub-Committee
of the Standing Committee of Community Services and
Income Security Administrators, Commonwealth Disability
Services Program, Department of Human Services and Health,
Canberra.
Providing Services for Parents
with Intellectual Disability: Parent Needs and Service
Constraints (1997)
For a more extensive reading of this study, see McConnell,
D., Llewellyn, G., & Bye, R. (1997) Providing Services
for Parents with Intellectual Disability: Parent Needs
and Service Constraints Journal of Intellectual & Developmental
Disability, 22 (1), 5 - 17.
Background
Although under certain conditions parent education
programs have been effective in developing the skills
of parents with intellectual disability, it is often
the case that these parents access such programs only
after a crisis has occurred. Crises such as suspected
child neglect precipitate court intervention, a common
outcome being mandatory parent attendance at family
support or parent education services.
In a desire to break this crisis/intervention/crisis
cycle, ways to effectively support parents with intellectual
disability are being explored.
Aim
To investigate the support and service needs of parents
with intellectual disability from the perspective of
specialist service providers.
Methodology
40 professional service providers employed by agencies
specifically designated for people with a developmental
disability or by a care and protection service participated
in a focus group or phone interview. Using a qualitative
approach, their views on the support and service needs
of parents with intellectual disability, and the major
issues faced in meeting these needs, were explored.
Findings & Recommendations
The support and service needs of parents with intellectual
disability were found to fall into three key categories:
- Parents' special needs - parenting skills; living
skills; self esteem and assertiveness skills; informal
social support; access to mainstream services; and
advocacy.
- Desirable service characteristics - tailored to
individual parent's needs; provided over the long
term; be home-based, empowering, pro-active, and at
a level parents can understand.
- Constraints on service delivery - lack of time,
staff and funding; lack of educational resources;
parent reluctance to use services; difficulties wit
transport; limited mainstream services; service providers'
skills and attitudes; and agency and community expectations.
That the special needs of parents with intellectual
disability extend beyond a learning of parenting skills
warrants further attention. Fundamentally, the resource
constraints faced by these agencies must be removed
if they are to effectively and comprehensively meet
the needs of this parent group.
Moreover, the authors outline four principles from
which service providers are encouraged to model their
service provision. These are:
- Respond to each individual parent's situation,
adopting a family centred approach so that the interests
of parents and children are served
- Provide flexible long-term, ongoing support to parents
as their needs and the needs of their children change
- Take into consideration the special learning needs
of parents when designing and implementing programs
- Actively assist parents to become part of their
local community so as to lessen the physical and social
isolation experienced by parents with intellectual
disability
Finally, inter-agency collaboration is also called
for, in particular, that which promotes the following:
- A family-centred focus in contrast to a parent-only
or child-only focus;
- Preventative work as a priority rather than crisis
intervention; and
- Access to mainstream services for parents and their
children rather than reliance on specialized support
services
This study was supported as part of the Parent Support
and Services Project by a research and development grant
from the Disability Services Sub-Committee of the Standing
Committee of Community Services and Income Security
Administrators, Commonwealth Disability Services Program,
Department of Human Services and Health, Canberra.
Relationships and Social Support:
Views of Parents with Mental Retardation/Intellectual
Disability (1995)
Llewellyn, G. (1995) Relationships and Social Support:
Views of Parents with Mental Retardation/Intellectual
Disability Mental Retardation 33 (6), 349 -
363.
Background
Despite concerns about the ability of parents with
intellectual disability to adequately care for their
children, rarely have these parents been consulted as
to their views on parenting education and what their
support needs are.
Aim
This study aimed to explore experiences of parenting
from the perspective of parents with intellectual disability.
Specifically, parents' views about their social relationships
and the support they receive, and seek, with the tasks
of parenting, were examined.
Methodology
Data collected from six couples as part of an ongoing
study on the shared experience of being a person with
intellectual disability and a parent were used. In depth
interviews, telephone calls, informal visits and observation
of family outings were conducted to extract parents'
perceptions. Information gathered was then coded and
analysed.
Findings & Implications
In contrast to the literature that presents parents
with intellectual disability as primarily requiring
and accessing substantial family support, those parents
involved in the study were shown to have support that
was more multifaceted:
- Most emphasis was placed on the support received
from and given to their spouses or partners. This
was in terms of practical assistance and moral support.
- Family members also rated highly, though not all
parents had family support available to them. Assistance
was particularly welcomed when it served to boost
the confidence of parents and when their input was
consistent with parents' values and ideas. At times
however, family members were regarded as intrusive,
dogmatic and ultimately unhelpful.
- Significantly, most parents did not have friends
or neighbours they could call on for assistance
- Parents reported that they do seek the support of
professionals, pending the type of help required,
the urgency of need and confidence in those who might
give help. Interestingly, parents exhibited a preferred
sequence in seeking help, beginning with their partners,
then family members, and finally, professionals. Assistance
received was not experienced as useful when conflicting
advice was given and when parent's learning difficulties
were not taken into account.
Several issues raised by this study are pertinent to
policy and practice:
- The parents involved in this study are testament
to the ability of those with intellectual disability
to be competent parents. As a population group these
parents should not be judged a priori; rather, their
personal histories and unique parenting and family
experiences ought to be taken into account.
- The study findings challenge the traditional concept
of parenting, that it is the prerogative of relatively
autonomous and independent individuals. The significant
presence of other people in the lives of parents with
intellectual disability requires consideration of
the more collective and communal aspects of parenting.
- How 'family' is traditionally perceived needs also
to be questioned. Families have to be understood as
they are and not in relation to perceived ideals.
The study findings of variation and diversity in the
parenting experience affirms the need for policy developers
to take into account family relationships and preferred
family styles.
- That family members can serve as resource or constraint
must alert policy makers and service providers to
do more than merely assume or propose that parents
can call on kin networks to provide support with the
tasks of parenting. Rather, it behoves service providers
to individually assess the support available to parents,
taking into account the parents' views of this support
as promoting or inhibiting their competence as parents.
- Providing opportunities for these parents to acquire
friends by initiating parent-to-parent support groups
and by teaching parents skills in developing friendships
appears to be an appropriate support intervention.
- Worthy of further investigation is the parental
viewpoint on services and whether these provide resource
benefits or impose constraints on their family lives.
Viewing professional support in this differentiated
manner would allow the development of a user-centred
framework to guide practice.
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Living Proof: Being a Parent
with Intellectual Disability (1993)
A Llewellyn, G. (1993) Living Proof: Being a Parent
with Intellectual Disability. Proceedings from the
29th Annual Conference of ASSID - the Australian Society
for the Study of Intellectual Disability - "Quality
and Equality". November 30 - December 5,1993,
Newcastle University.
Background
Parents with intellectual disability are often presumed
incapable of competently caring for their children.
Thus any support available to these families is assumed
to be beneficial and welcomed.
Little attention in the research literature has been
paid to the place of family, neighbours, and friends
in the lives of these parents. Moreover, parent views
on social support (or lack thereof) have been neglected.
Aim
This study aimed to explore the views of parents with
intellectual disability on social support in their daily
family lives. In particular, it aimed to examine the
presence of others in their family lives and the ways
in which they attempted to manage this involvement.
All aspects of the parents' social support networks
were to be considered.
Methodology
Over a two year period, seven family units consisting
of ten parents participated in the study. Field notes
were taken and data collected from initial, informal
meetings, observations of family life/outings, and in
depth interviews. These were analysed using constant
comparative analysis.
Findings and Implications
Three case study accounts are presented to provide
a sense of the range of the social support networks
of parents with intellectual disability. As with all
families involved in the study, these parents experienced
the significant presence of other people in their family
lives, including family and professionals from service
agencies. This involvement varied along a number of
dimensions: short to long term involvement, relevant
in specific instances only or as part of all aspects
of the parents' lives; readily available to not easily
accessible; highly intensive or low key; restrictive
or freeing; practically and/or emotionally based.
Parents involved in this study were shown to manage
the involvement of others in their family lives by using
three key strategies:
- Accepting
Whilst the involvement of others was generally accepted
as being inevitable, this took the form of either
complying without question, complying despite disagreeing
with the other person's contribution, or disagreeing
and not complying despite seeming to accept the contribution
of others.
- Seeking Assistance
Assistance was sought from
- partners - mainly for child care and household
management task
- family members - for personal support and for
ideas about how to care for the baby and later,
how to manage the chil
- professionals - for assistance in unexpected/frightening
situations; to monitor the child's progress; for
ideas on managing their child's behaviour. Professionals
were generally thought to be trustworthy, however,
the manner in which they contributed was not always
welcomed, and not always perceived as helpful, particularly
where the parents' difficulty with understanding
and learning new concepts were not taken into account,
or conflicting advice was given.
Of note was the absence of friendship ties to each
of the family units. Thus asking other parents or
friends for assistance was rare.
Assistance was sought in a particular sequence: families
first, followed by those with recent child care experience
and lastly, professionals. This sequence was affected
by factors such as type of assistance required, urgency
of need of assistance, and confidence in those who
might give assistance.
- Getting and Giving
The notion of reciprocal social support was observed
with the partner or another family member (often acting
as an adjunct parent). It was expressed through the
provision of physical assistance, support being provided
for the other persons' views or wishes, and through
the provision of moral support.
Overall, the parent viewpoint illustrated in this study
presents a broader perspective than the previously conceptualized
picture of social support in the lives of parents with
intellectual disability as merely being a family affair
that either promotes or inhibits parental competence.
Parents were shown to be more than simply receivers
of support from a delineated group of people. Rather,
parents played an active role in determining what support
they want, from whom, and in what way. Getting and giving
support, particularly with their partner, played a central
role. In addition, whilst receiving help from family
members was preferred, this was regularly supplemented
by seeking assistance from professionals. Notably absent
from the parents' lives was any presence of friends,
neighbours and community acquaintances.
These findings suggest that parenthood for adults with
intellectual disability needs to be viewed in a fresh
light. Investigating their perspectives of whether support
is regarded as a resource or a constraint in their environment
offers more promise than a continuing focus on the individual
parent's potential or realized competency level. Particularly
worthy of further investigation are the ways in which
parents do provide support (or do not, as the case may
be) to each other and the role of professionals as resources
or constraints in their family lives.
Finally, this study serves as a poignant reminder of
the little that is known about the views of people with
intellectual disability. The literature on parents with
intellectual disability, dominated by the professional
perspective, has concentrated on assumed parental inadequacy
and ways by which individual parental competency can
be enhanced. This has resulted in parents with intellectual
disability being regarded as having little agency in
their own lives. The parents in this study, by their
own accounts, give lie to this view. Parents with intellectual
disability do actively determine and manage the presence
of others in their family lives. The challenge is now
to incorporate this parent perspective into research
and practice.
Parenting: A Neglected Human
Occupation. Parents' Voices Not Yet Heard (1994)
Llewellyn, G. (1994) Parenting: A Neglected Human
Occupation. Parents' Voices Not Yet Heard Australian
Occupational Therapy Journal, 41, 173 - 176.
This article attempts to stimulate interest in the
occupation of parenting and, particularly, in the exploration
of parents' perspectives on parenting. This is of particular
importance to the practice of occupational therapists
who play a key role with parents of children with special
needs. Their professional perspective focuses on what
parents do and how they do it.
What is lacking in this process however is an engagement
in parents' own views on parenting. When parents are
consulted, this is usually limited to their attitudes
to child rearing. The roles and everyday activities
of parenting, as perceived by parents themselves, and
how people perceive becoming and being a parent is usually
neglected.
Why is incorporating parents' voices so important?
Firstly, it is in keeping with one of the core values
of occupational therapy, the belief that every individual
has intrinsic dignity and worth. This implies that each
individual's 'voice' is worthy of attention.
Second, practitioners can learn much about parenting
as a human occupation when the participant perspective
is sought. Studies for example, have highlighted:
- contrasting views held by mothers and their
therapists about physical and occupational therapy,
and the impact this has on how mothers actually implement
the home programs prescribed;
- role strain to be an issue for mothers of young
children. This is of concern to occupational therapists
who regard role balance as essential to health and
well-being; and
- the competing demands encountered by parents with
an intellectual disability, these including having
to implement a home-based therapy program
In taking into account the perspective of parents,
practitioners will be more acutely aware of how to maximize
the effectiveness of their intervention. But to do so
requires several assumptions to be put aside:
- the presumption that practitioners objectively know
what constitutes adequate or inadequate parenting;
- the equating of 'parent' with women, and usually
unpaid carers; and
- the viewing of 'family' as mother, father and children,
without any attention being paid to family constellations,
parent networks, and relational processes.
There is an untapped wealth of parental expertise in
managing everyday parenting. With this in mind, occupational
therapy practitioners and researchers are challenged
to respond, to listen sensitively to the parent voice
and, in so doing, to redress the neglect of the human
occupation of parenting.
Generic Family Support Services:
Are Parents with Learning Disability Catered For? (1994)
Llewellyn, G. (1994) Generic Family Support Services:
Are Parents with Learning Disability Catered For? Mental
Handicap Research 7(1), 64 - 77.
Background
As increasing numbers of adults with learning disability
(LD) have children, specialist disability services are
responding with the provision of parent education programs.
Whilst positive outcomes are generally reported, the
greater participation of parents with LD in society
begs the question of whether their parent support needs
can be catered for by generic services. Family support
services for example, have a policy commitment to helping
parents with learning disability, but how does this
translate in practice?
Aim
This study aimed to determine if and how generic family
support services in New South Wales provide assistance
to parents with LD. Further, it also considered whether
this assistance included components thought necessary
for successful training outcomes for parents with LD.
Methodology
Co-ordinators of 89 identified state wide family support
services that indicated they catered for parents with
LD were surveyed, with three general areas being covered:
service characteristics, types of services provided
to the parents, and demographic information. Open-ended
questions on whether parents with LD were specifically
acknowledged in service policies and whether programmes
or funding specifically targeted the needs of these
parents were also included.
Findings
Only 20% (28) of the 136 identified family support
services in NSW catered for parents with LD. The most
common profile of these parents is as follows: young
(19 - 30 years), Australian-born non-Aboriginal with
English as a first language, a mild learning disability,
preschool or school aged children and one adult in the
parent role.
On average, four parents per service were catered for,
with the range of services offered being either direct
or indirect:
- Direct: Information about community resources and
services (89%), parent education and training (85%),
intervening on behalf of the parents (78%), training
for parents in getting help for themselves (75%),
and referral to other agencies (67%).
- Indirect: Group activities for support (53%), fun
(46%), and parent peer support (32%)
Parent education and training was done more on an individual
than group basis (86% and 60% of services respectively),
more at home than at the service (78% and 43%), and
with illustrative materials in only 34% of services.
Certainly some services encompassed those components
of training programs identified as being predictive
of positive outcomes for people with LD i.e., interventions
are matched to parental learning characteristics (eg.,
using illustrated materials), training is highly concrete
using strategies to promote generalisation and maintenance,
education programs are conducted by well trained staff,
and interventions need to be initially intensive and
then periodic over the long term.
The research provides two possibilities as to why many
family support services are unable or disinclined to
work with parents with LD. Firstly, staff and/or funding
constraints may prohibit the provision of the individual,
intensive and home based support that parents with LD
require. Secondly, with services working with only a
small number of this parent group, the feasibility of
offering groups specifically designed for these parents
is limited. Interestingly, many co-ordinators' responses
also indicated that the needs of parents with LD could
be more appropriately met by specialist intervention.
Of course, the parents' perspective on their involvement
in family support services remains to be investigated.
It cannot be assumed that parents will view the services,
or hold preferences about specialist or generic services
in like manner to the professionals working in those
services.
Parents with Intellectual
Disability: Facts, Fallacies and Professional Responsibilities
(1993)
Llewellyn, G. (1993) Parents with Intellectual Disability:
Facts, Fallacies and Professional Responsibilities Community
Bulletin 17 (1), 10 - 19.
For people with intellectual disability, becoming
a parent is often not greeted with the same level of
excitement
that others experience. Rather, family, friends and
service providers may be ambivalent if not actively
discouraging of their decision to have a child. Such
fears and concerns have been shown to stem from a mixture
of facts and fallacies that portray people with intellectual
disability as incapable of being competent, loving
parents.
In comprehensively reviewing research on parenthood
for people with intellectual disability, a range of
presumptions are identified:
- intellectually disabled parents will have significantly
more children than other parents;
- they will give birth to intellectually disabled
children;
- if the children are not disabled at birth they will
quickly become so;
- they will abuse or neglect their children;
- they will provide inadequate child care; and
- they are unable to learn and apply adequate parenting
skills.
Each of these opinions is explored, again in light
of available literature, and shown to be by and large
fallacy, not fact:
- parents with intellectually disability have the
same or fewer numbers of children than other parents;
- the incidence of organic aetiologies among children
of intellectually disabled parents is equal to that
found in the general population;
- a clear relationship between parent intelligence
and the child's educational achievement has not been
established for any specified parent group. Further,
a number of factors besides parent IQ, such as poverty,
poor nutrition and school absence due to illness or
high mobility, have been identified as contributing
to poor educational achievement;
- no conclusive argument that parents with intellectual
disability will abuse or neglect their children prevails.
When such cases do occur, little consideration is
given to predisposing factors such as social isolation
and poverty. Indeed, whether the frequency or severity
of abuse and/or neglect for these parents differs
substantially from that found among other poor parents
is yet to be determined;
- contradictory findings are common on the question
of whether parents with intellectual disability function
adequately as parents. What is clear is that most
families require extensive assistance to fulfill the
everyday needs of their children and that parents
may struggle when this is not the case. Moreover,
intellectually disabled people have been deemed by
the courts to be incompetent parents often on the
basis of diagnostic label and intelligence quotient
alone. This is in contrast to the finding that above
a minimum critical level of around IQ 60, there appears
to be no clear relationship between parenting competency
and IQ. Finally, factors such as family income, number
of children in the household, and parents' childhood
experiences of parenting warrant further investigation
as to their impact on quality of care;
- parents with intellectual disability have been shown
to learn parenting skills and behaviours. What facilitates
this process is the provision of training that is
specific, concrete, provides help in generalizing
skills learnt to other situations, matches parental
learning characteristics, is initially intensive and
then periodic and long term, and is provided by a
well trained practitioner.
These findings from the research literature hold numerous
implications for those with professional responsibility
for parents with intellectual disability. Most basic
is the need for practitioners to develop and operate
from a sound working knowledge of current empirical
research, rather than relying on unfounded opinions
about this parent group. Further, practitioners are
urged to use this knowledge to raise awareness in the
health, social services, education and legal sectors,
and in the community at large.
Second, service professionals are encouraged to adopt
a more macro approach to their clients, and consider
the socio-economic and community context of parent.
To do so would lead to an introduction of much needed
services other than parenting skills training, eg.,
social skills training and self advocacy. Irrespective
of the service provided, the perspective of parents
should also be sought in any planning, designing and
evaluating of programs.
Continual lobbying for adequate resources clearly also
needs to be undertaken, resources for social services
and court system supports, and resources for professionals
to undertake the specialized training they need to effectively
work with this parent group.
Practitioners are encouraged to lead the way in developing
a progressive and optimistic outlook about parents with
intellectual disability, while realistically acknowledging
their parenting challenges.
Talking with Parents with
Intellectual Disability (1993)
Llewellyn, G. (1993) Talking with Parents with Intellectual
Disability. In Johnston, C. (Ed) Does This Child
Need Help? Identification and Early Intervention Sydney:
Australian Early Intervention Association (NSW Chapter)
Inc.
To date, the research literature on parents with intellectual
disability has been entirely from the professional
perspective.
This chapter provides a timely reminder of the importance
of paying attention to parents' points of view. Points
of consideration are given to enable practitioners
to
most effectively communicate with these parents and
uphold their dignity in the process.
Outdated Stereotypes
- Contrary to popular thinking, understand that people
with intellectual disability do sexually and personally
mature
- Parents with intellectual disability are not inevitably
incapable of caring for their children. Sometimes
this seems to be the case because only those struggling
with the tasks of parenting are known to support services
Life Experiences
- Attempt to understand parents' life experiences
and the impact of these on current behaviour. Consider
their self-esteem, social skills, internal/external
control, social role, and problem solving skills.
Many have been encouraged to remain dependent on family
or service providers, and so may not have had adequate
preparation for adult life or the challenges of parenthood.
Parents as Individual
- Focus on the parents' personal or parental needs.
Often these are subsumed by attention placed on the
needs of their children.
- Parents with intellectual disability are not a homogenous
group. Remember that their needs and available supports
will be unique.
- Give parents room to share information about themselves.
At the same time, respect their right to privacy.
- Be wary of labeling. Many children who, whilst at
school were labeled intellectually disabled, successfully
integrate as adults into the wider community without
needing specialist services for people with intellectual
disability or attracting the intellectual disability
label.
- Don't lose sight of each individual's ability in
the face of their disability
Parents as Parents
- Uphold their right to be regarded as the parent
of the child
- Talk to these parents as adults, not children
- Encourage them to express their viewpoint and respect
what they have to say
- Be wary of imposing your advice and/or giving overwhelming
amounts of advice
- In addition to the practical tasks of parenting,
offer assistance in other skill areas eg., assertiveness
training and advocating for their child
- Provide information in non-ambiguous, direct short
statements. It is often necessary to repeat the information,
perhaps over several visits. Ask the parent to explain
to you what they think the information means - this
will help you to know whether they have understood.
- You may also need to ask the parent if they have
a family member or friend to whom you could talk.
When this is the case, ensure the parent is not denied
their right to be the adult who is responsible for
their child.
- Involve parents in any discussion or decision-making
to the extent that they are able
- Acknowledge that there may be competing demands
between the needs of parents and their children
- Remember that parenting is a socially determined
process carried out within a family, social and community
context
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People with Intellectual Disability
as Parents: Perspectives from the Professional Literature
(1990)
Llewellyn, G. (1990) People with Intellectual Disability
as Parents: Perspectives from the Professional Literature Australia
and New Zealand Journal of Developmental Disabilities, 16
(4), 369 - 380.
The baggage of past policy and practice to prevent
those with intellectual disability becoming parents
remains despite increasing numbers choosing to have
children. The question of whether one can be a competent
parent and have an intellectual disability is both
historical
and current. In response then, this paper examines
the various perspectives presented in the professional
literature
about parenting for people with intellectual disability.
The studies reviewed present an ambiguous answer to
the question of whether people with intellectual disability
can adequately function as parents. Various angles are
examined:
- Parenting after institutionalization - in terms
of providing adequate child care, parents' competence
ranged from satisfactory to neglectful
- Parenting of those already identified as needing
assistance - these studies frequently found this group
of parents to be incompetent. These findings however,
need to be treated with caution, with the majority
being subject to methodological flaws such as inadequate
sampling, poor definition of parenting behaviours,
lack of validity and reliability in measures used
to judge parenting, and poor design characteristics,
specifically when comparison groups are used.
- Outcomes for the children - low maternal intelligence
was shown to be a significant predictor of low IQ
in the offspring. However, a clear relationship between
parent intelligence and their child's educational
achievement has yet to be established for any specified
parent group. Rather, a variety of factors besides
parent IQ have been identified as contributing to
poor educational achievement. These include poverty,
poor nutrition and school absence due to illness or
high mobility.
- Parenting in comparison with other parents - whilst
some studies showed mothers with an intellectual disability
to have fewer and/or less stimulating interactions
with their children, socio-economic differences were
largely ignored. When taken into account, mothers
with intellectual disability were shown to make decisions
about child care issues at least as good as those
made by contrast mothers from similar backgrounds.
- Parenting before the courts - on the basis of diagnostic
label and intelligence quotient alone intellectually
disabled people have been subject to court findings
of general incompetence. This has been in stark contrast
to research that has shown that above a minimum critical
level, no clear relationship between parenting competency
and IQ. Further, these outcomes were reached without
due regard for usual neglect investigations and provision
of support services.
One also needs to keep in mind that not all families
in which one or both parents are intellectually disabled
are known to health, welfare or protective agencies,
and in consequence, to researchers in the disability
field. Presumably there are parents with intellectual
disability who are competent.
A review of the literature served to identify those
factors that contribute to successful parenting and
those that predispose to inadequate parenting. These
factors are:
- Number of children - several studies reported quality
of care to decrease as the number of children increased.
However, these findings again need to be viewed in
the context of biased samples
- Income level - care is questionable or unsatisfactory
when parents had marginal incomes or were receiving
financial assistance
- Additional health issues of the parents and the
parents' own upbringing - both are likely to negatively
influence adult parenting behaviour
- The availability of parent education resources -
parental difficulties were unlikely to be addressed
where service providers were unwilling or unable to
tailor these to the specific learning needs of parents
with intellectual disability
- Available familial supports - this was an element
crucial to parental competence and which reduced the
need for support from formal agencies
Given the contradictory and equivocal research findings,
coupled with the considerable variance within the 'intellectually
disabled' group and their social and family contexts,
it is impossible to predict with certainty which people
with intellectual disability will succeed as parents.
What is clear however, is that against the skewed nature
of parent groups studied, a substantial number of people
with intellectual disability function adequately as
parents.
Parents with Intellectual
Disability and Older Children: Strategies for Support
Workers (1998)
Llewellyn, G., McConnell, D., Grace-Dunn, R., & Dibden,
M. (1998) Parents with Intellectual Disability and
Older Children: Strategies for Support Workers. Melbourne:
Victorian Government Department of Human Services.
This report can be downloaded from the following site: http://hnb.dhs.vic.gov.au/ds/disabilitysite.nsf/pages/research
Background
There are increasing numbers of parents with intellectual
disability in Australia and more of these parents are
continuing to parent their children into the primary
and high school years. All parents of children 9 - 12
years of age face increased expectations to conform
to social and cultural mores, for example, enforcing
discipline, effectively communicating with their children,
preventing anti-social behaviour, and assisting their
children to achieve academically, and thus the task
of parenting this age group is a challenging one for
all.
This challenge is even more pronounced for t |
