Early Intervention
Early Intervention Services and Parents
with Disabilities (1999)
Llewellyn, G., Thompson, K. & Proctor, A. (1999)
Early intervention services and parents with disabilities.
International Journal of Practical Approaches to
Disability, 23(1), 3 - 8.
Background
Early intervention services are typically provided
for children with disabilities/developmental delay.
When the parents of these children also have a disability,
particularly an intellectual disability or a mental
illness, service provision may become problematic. Just
what role can and do early intervention services play?
Although family-centred guidelines, best practice manuals
and training programs are becoming commonplace in an
effort to ensure workers implement family-centred practices,
parents with disabilities have received little attention
in these initiatives.
Aim
This study attempted to redress this lack of attention
to parents with disabilities in early intervention initiatives.
Its aim was to identify early intervention personnel
in New South Wales who were working with parents with
disabilities and to explore whether the services they
provided to these parents differed in significant ways
to those provided to non-disabled parents.
Methodology
A qualitative telephone survey was conducted with 90
early intervention services in NSW. The first question
was designed to identify those services that had worked
with parents with a disability. For those that had,
the first issue discussed was whether or not their service
worked differently with these parents. Following this,
the ways in which the services differed were identified.
A final section provided the opportunity for open-ended
comments.
Findings & Implications
45 services (50%) reported having had no contact during
the previous year with parents with disabilities. Of
the remaining services, parental intellectual disability
and parental mental illness were by far the most frequently
encountered. The following results pertain to workers'
experiences with these parents.
Respondents reported significant differences in the
way they worked with parents with disabilities compared
with other parents:
- More time was needed to prepare for, work with
and follow up parents with disabilities.
- Different methods of service delivery were employed,
for example, in its location (the parent's home),
the amount of support given and the style (format
and content) of intervention.
- Workers needed to coordinate and collaborate with
other agencies to a greater extent.
- Higher parent-staff ratios were employed; the more
experienced staff were allocated to work with these
parents and/or service directors were more involved
at a supervisory and a practical level.
- Additional/different resources were bought, modified
or developed to adequately support parents with disabilities
eg., pictorial information, videos.
An outcome of these differences and the complex issues
that arise in working with parents with disabilities
were seen to have practical and emotional consequences
for early intervention workers. At a practical level,
additional support (time, resources, and worker experience)
and additional service documentation were required.
At an emotional level staff needed time to debrief,
thus helping to alleviate some of the frustration workers
reported when faced with inadequate staffing and resources.
Overall, the role and function of the early intervention
worker is considerably expanded when working with parents
with disabilities. Further, several issues present when
considering the most effective early intervention practice:
- Early intervention services are in an ambiguous
position in terms of providing the ongoing support
usually required by parents with disabilities as their
children move on to school. Given that they do not
receive a referral until the second or third year
of a child's life, and that their funding criteria
limits them to providing support to children under
6 years of age, staff and families may be thus be
faced with a difficult handover period only a year
or two into the relationship.
- The difficulties involved in acting as a preventative
rather than crisis-oriented service.
- Ensuring that the needs of the child, parents and
the whole family are met presents a challenge to early
intervention workers. Overall the respondents in this
study felt troubled by not having enough time to assist
and empower parents on the one hand and on the other
to serve their children. This dilemma appeared to
be a source of considerable stress.
- Given resource constraints and the slower progress
made with parents with disabilities, intervention
goals may need to be fewer, less complex, and more
focused on the parent.
- The need for staff training and guidelines on how
to best work with families where there is a parent
with a disability.
- In being primarily a 'child related' service, workers'
knowledge of 'adult-related' services was not sufficient
to adequately meet parent needs.
The findings from this exploratory study suggest several
implications for early intervention policy and practice:
- There is significant strain for early intervention
staff working with parents with disabilities, particularly
where they consider themselves to lack expert skills
and knowledge about how to work effectively with these
parents. It is therefore critical that these workers
have access to training and support. Recommended practice
and early intervention training programs must be expanded
to include information and skills training specific
to the support needs of parents with disabilities.
- The second policy implication is the potentially
important role for early intervention services in
identifying parents whose children may be at risk
of developmental delay. Currently it is unlikely that
referral to an early intervention service will occur
before the child is identified as having a developmental
delay. Provision of structures whereby early intervention
services consult routinely with mainstream child agencies
about families where children are potentially at risk
of delay could increase preventive support to parent
and child and help avoid delayed or late referrals.
- Finally, the findings from this study draw attention
to the often-complex support needs of families where
both parents and children have a disability. Complex
issues require concentrated attention from many sources.
It is highly unlikely that any one agency or service
will be able to offer the perfect solution to supporting
parents with disabilities and their children. There
is an urgent need for policy makers to address the
practical time and staff resource issues raised in
this study. A first step would be the development
of a cross agency committee to explore how the support
needs of this particular group of parents with disabilities
and their children can best be met.
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Early Intervention Services in Daily Family Life:
Mothers' Perceptions of "Ideal" Versus "Actual"
Service Provision (1998)
Thompson, K. (1998). Early intervention services in
daily family life: Mothers' perceptions of "ideal"
versus "actual' service provision. Occupational
Therapy International, 5(3), 206 - 221.
Background
In Australia, policy and practice are directed towards
a community-based model of care that encourages families
to care for their relatives with disabilities in the
home. However, when a young child has a disability and
high support needs, caregivers, usually mothers, also
become involved in specialist services to help their
child. Occupational therapy is one of the specialist
services that comprise what is known as early intervention.
The focus of occupational therapy services has shifted
from a traditional child-centred approach - where therapy
focuses on bringing about changes in the child as distinct
from the family - to a more family centred one. Here
it is assumed that supporting families in their caregiving
role promotes the functional development of the child.
Adopting such a model of care requires specific competencies,
including skills related to developing an understanding
of individual family situations and communicating this
understanding to parents. Further, extensive guidelines
exist for occupational therapy practice with families.
These pertain to supporting parents practically and
emotionally in their role as caregivers of a child with
a disability. Supportive services are characterized
by a collaborative relationship between therapists and
parents who, as equal partners, identify the family's
needs and resources and work together in developing
a service structure and home program routine that fits
into daily family life.
Although the occupational therapy and early intervention
literature expouses a family-centred approach to intervention,
families have rarely been asked about their experiences
of these services. Whether the experience of parents
caring for a child with a disability and high support
needs matches this theoretical approach requires exploration.
Aim
This study aimed to identify and explore parents' perceptions
of occupational therapy services and the impact of these
services in their daily family life.
Methodology
A qualitative, ethnographic approach using semi-structured,
in-depth interviews and demographic questionnaires was
used to explore the parents' perspective. Five basic
areas provided an outline for addressing parents' perceptions:
the focus of the service; the fit of services into family
routines; the values and attitudes of the therapists
working with families; the coordination between services
and different occupational therapists; and parents'
descriptions of occupational therapy. Ten mothers of
children 0 - 6 years were involved in the study. All
interviews were taped and transcribed, and a constant
comparative analysis conducted to identify similarities
and differences in the data.
Findings and Recommendations
Mothers described their experiences of caring for a
child with a disability and high support needs, and
their use of early intervention occupational therapy
services as follows:
- Mothers' Own Feelings and Actions
- Often evaluated their efforts by comparing these
with their child's progress and development eg., when
their child was progressing well, mothers perceived
their efforts in accessing and participating in early
intervention services as worthwhile and consistent
with the needs of the child.
- In need of constant reassurance and feedback from
service providers about their child.
- Compared their efforts with those of other mothers.
- Involved in an ongoing cyclical process of seeking,
waiting, participating in, adjusting to and analysing
the early intervention services their child received.
- Experienced anxiety, anger and frustration at the
vast shortage of service providers and the consequent
long wait for services and associated delay in the
progress and development of their child.
- Made substantial efforts to accommodate and monitor
early intervention services.
- Forgoes opportunities such as employment in order
to pursue services for their child.
- Perceptions In Relation To Their Children
- Wanted their children to have good health and to
develop further.
- Measured their child's development in terms of functional
goals such as 'communicating' and 'walking'.
- Made ongoing comparisons between their children
to the development of other children both with and
without disabilities, and to their child's own previous
level of development.
- The development of their child was seen to be intrinsically
linked to their efforts as the primary caregivers,
to the amount of contact time that the child had with
therapists, and to the different early intervention
service providers working together on common goals.
- Family-Focused Actions and Concerns
- Have to continually balance the demands placed on
them by their home, their family and the early intervention
services their child received.
- Need to consider both home programs and direct-contact
therapy sessions so as to balance competing demands.
- The incompatibility of family and therapist routines
often thwarted attempts to incorporate early intervention
services into daily family life.
- Identified significant impact on siblings in terms
of feelings of jealousy and increased responsibilities
being assigned to siblings. Those services that used
a family-oriented approach, and thus fostered sibling
participation and a sense of inclusion, were perceived
as having the potential to strengthen family relationships.
- Family participation in early intervention services
was influenced by both personal and practical factors
eg., the availability of childcare, the attitude of
service providers towards siblings and parental involvement,
the employment situation of caregivers, the friendliness
of therapists, and transport difficulties.
- The Place of Services
- Therapists ideally played out several roles in the
course of their service provision: as a teacher of
therapy techniques to both caregivers and children;
as a referral source to other information and support
services; as a support person insofar as providing
reassurance and guidance by sharing information about
other children with disabilities and their families,
as well as by being genuinely friendly and interested
in how the whole family was going.
- Early intervention services played a significant
part in the lives of families with children with high
support needs. They also added considerable pressure
to families already straining under the pressure of
busy family routines. Apart from the need to adjust
routines, and to overcome transport and childcare
difficulties, mothers noted significant financial
costs associated with accessing early intervention
services. In particular, the cost of transport to
services, childcare for siblings, and loss of income
was considerable. Additionally, several mothers described
accessing costly private intervention services while
on the waiting list for public early intervention
services.
The findings of this study in relation to what mothers
want from early intervention service providers are consistent
with research concerning generic support services. Appeals
for therapists to provide information; to develop open,
trusting communications with caregivers; and to advocate
for child and family needs were repeatedly emphasized.
In this study however, almost all occupational therapy
services received were regarded by mothers as being
focused on their child with high support needs. This
contradicts the view expressed by the mothers that the
personal support provided to them by therapists was
as important as 'hands-on' intervention with their child.
Interestingly, the professional literature falls far
short of similarly acknowledging the value of personal
support provided to caregivers by therapists.
Moreover, mothers in this study were compelled to adjust
their personal and family routines in order to obtain,
maintain and monitor early intervention services. This
was because many of the ideal characteristics of services
and service providers that mothers noted were not experienced
in reality. Service providers did not adequately involve
families in the development or implementation of therapy
services. Notably, 90% of mothers were not involved
in the development of an Individualised Family Service
Plan (IFSP), a key method of helping service providers
consider the needs, resources, concerns and strengths
of families, and thereby a means to reduce the need
for family adjustments to utilize early intervention
services.
Of course, more than IFSPs or similar plans, the attitudes
and values of the therapists were more likely to determine
family involvement. For example, when therapists considered
the occupational role balance of the family (in addition
to that of the child), and were friendly and sensitive
to family needs and priorities, services were structured
to meet the personal (eg., emotional support) and practical
needs (eg., home visits, sibling involvement) of individual
families.
Constraints impinging upon this process, as identified
by mothers in this study, included personnel shortages
and time restrictions. However, based on current literature
it is feasible to suggest that many therapists, particularly
those with less experience or education, do not have
the skills required to work with families. Continuing
education or in-service training on working effectively
with families needs to be provided for early intervention
service workers.
Although the aim of this study was to specifically
investigate occupational therapy services, mothers had
difficulty differentiating these from other early intervention
service providers. When it is the child who is primarily
being assisted, coupled with the sheer number of different
service providers working with these families, it may
be difficult to determine 'who is who'. This suggests
a need for a more transdisciplinary approach, and perhaps
for occupational therapists to look more closely as
to how their role is being defined.
Conclusion
Mothers in this study clearly described ideal characteristics
of services and service providers. These descriptions
have significant implications for, and present a challenge
to, occupational therapy practice, education and research.
To be truly family-centred therapists, we need to reflect
on and re-orient to the expressed needs of families.
We need to work with other professions and with families
on common functional goals. We need to provide relaxed,
friendly support to family members as individuals, not
exclusively in relation to the child with a disability.
We need to foster family involvement in services, with
particular emphasis on sibling participation. To do
so, we need to develop the skills and knowledge required
to work with families. Occupational therapists need
to be educated in family-related expertise in addition
to the child-related skills that dominate undergraduate
studies in paediatrics. As researchers, we need to further
investigate the needs of families and the best ways
of meeting these needs. First and foremost, developments
in all areas of family-centred occupational therapy
practice, education and research will require us to
listen to families. To do less would negate our fundamental
concern as occupational therapists - to support the
health and wellbeing of the clients we serve.
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Early Intervention: Some Issues in Co-operative Team
Work (1987)
Maple, G. (1987). Early intervention: Some issues in
co-operative team work. Australian Occupational
Therapy Journal, 34(4), 145 - 151.
Working in teams is the currently acceptable way of
providing early intervention services for children and
families with special needs. In the most recent approach,
the transdisciplinary team, professional participation
cuts across traditional discipline boundaries. All members
contribute to an individualized plan for the child,
with one or two team members being designated as primary
agents for intervention.
There appears to be an underlying assumption that team
members will work together in a co-ordinated, co-operative
and goal-directed fashion. There are times however,
when this seems unrealistic, unreasonable or just plain
impossible to achieve. Potential sources of disruption
to team work stem from the following areas:
- Team Functioning
- Early intervention teams are composed of professionals
operating from different and potentially conflicting
frames of references, usually from a medical, psychological,
social or educational orientation. In addition, there
is the family's frame of reference to consider
- The roles individuals play or want to play within
the team may be at odds with the agenda held by their
respective bureaucratically prescribed functions
- Team maintenance goals are often not clearly recognized
or discussed by the team, and individual members will
accord these goals differing priorities
- Team Purpose
- Competing goals may be at work: goals for the children
and family, individual professional goals, and goals
of the service delivery agency
- Team members may also generally agree about the
direction in which they wish to move with a particular
child but have serious differences of opinion about
the ways used to get there
- The Team as Individuals
- No early intervention team will be homogenous; they
will always consist of individuals with a variety
of personalities and styles, and from a range of professional
and non-professional backgrounds
- The expectations one has of their profession and
how this will translate into support for the family
may encroach on or be in conflict with the expectations
of other members
- Lacking a clear understanding of the skills and
responsibilities of team colleagues may be a source
of confusion or frustration
- Each team member's perception of themselves and
their position within the team will affect how they
behave and their understanding of the position and
perception of others on the team
- Sometimes people occupy positions because of their
personality and characteristics and often, roles are
taken up and reinforced by how these individuals are
seen by others
- Attempts may be made by individual members to cover
up or minimize the importance of any gaps in knowledge
they may have
- The Family as Team Members
- The concept of team must be broadened to incorporate
the children and families they are aiming to assist.
Whilst there is growing advocacy for parent to be
included not just as information givers and service
receivers but as equal and contributing team members,
what form this 'contribution' takes may be contentious
Establishing and managing relationships between individuals
is obviously a critical component of team work, and
it would seem only sensible to allow time to develop
procedures to minimize inevitable conflicts and prevent
serious disruption to the efficiency and effectiveness
of the team. Based on the work of Payne the following
questions provide the basis for each team member to
assess or re-assess their position in the team and for
the team to review the effectiveness of its functioning:
- Who communicates most with members and how?
- Who has power and in what way?
- Who likes whom and what are the effects?
- How do team member's roles affect each other?
- How does work flow between members?
- What are people's status in relation to others,
and on what basis is it?
Another way in which the functioning of the team could
be reviewed is to look at a different series of questions
that are primarily concerned with 'the person':
- What does each person bring to the team/to their
position as an individual? As an individual with a
particular background?
- What does each member expect to contribute to the
team/to their position as an individual? As an individual
with a particular background?
- What does each member expect to gain from the team/from
their position as an individual? As an individual
with a particular background?
Finally, parents need to be offered a variety of options
so that they can determine their level of involvement
appropriate to their own and their family's needs. Parent
wishes, abilities and available time are all factors
which need to be taken into account. This type of flexible
arrangement would form a basis for effective and comfortable
sharing within the team in which all members are a part
of the group.
Given the generally widespread acceptance of the concept
of teams in early intervention services it seems imperative
to raise issues in teamwork. In this manner people may
move towards discovering ways in which teams may work
to provide better integrated, co-operative and shared
services to children and families with special needs.
Maple, G. (1987) Early intervention: Some issues in
co-operative team work Australian Occupational Therapy
Journal, 34(4), 145 - 151.
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