April 2002 - Ref 422
Supporting disabled adults in their parenting role
A
jigsaw of services (Social Services Inspectorate, 2000) made the point
that the parenting support needs of disabled adults frequently fall
between adult community care provision and children's services.
Michele Wates carried out a survey to find out whether social services
departments have policies/protocols in relation to providing services
to parents with physical and sensory impairments and/or learning
difficulties and, if so, how effective these are likely to be in
meeting the needs of families. Analysis of the responses from 125
social services departments and of 31 policies/protocols found that:
- The policies/protocols expressed supportive intentions towards
disabled parents. However, in many of them it was unclear how the
assessment of children's needs (using The framework for the assessment
of children in need and their families) would link with community care
provision to address disabled adults' parenting support needs.

- Parenting tasks and roles were seldom specified in eligibility
criteria for assessment for community care provision.

- Where an adult's personal care/assistance needs apart from
parenting were low and children were not seen as giving rise to
concern, in many places parental support needs would not reach
thresholds for receiving assessment and/or services from either
adults' or children's divisions.

- Although policies acknowledged disabled parents' anxieties about
approaching social service departments, few measures were taken to
allay these fears; for example, by ensuring the continued involvement
of specialist adult services where child protection concerns had been
identified, or by producing accessible information specifically aimed
at disabled parents.

- Some departments provided valuable examples of innovative work -
often involving disabled parents - in developing procedures, financial
co-operation and training across social service divisions and between
agencies.

- The researcher concludes that the policies/protocols most likely to
be effective are those that upheld disabled adults' entitlement to
parenting assistance; reducing the risk of difficulties arising within
their families by providing timely and appropriate support to disabled
parents.

Background
When the Social Services Inspectorate (SSI) carried out an
inspection of services to support disabled adults in their parenting
role, they found that only one of the eight departments visited had a
policy specific to disabled parents (A jigsaw of services, SSI,
Department of Health, 2000). The Inspectors recommended a major shift
in the approach to working with disabled parents, including a
recognition of the right of disabled people to be supported in
fulfilling their roles and responsibilities as parents, and the
development of policies and strategies to improve 'joined-up working'
across adults' and children's service divisions and between agencies.
In December 2000, the Joseph Rowntree Foundation set up a Task
Force on Supporting Disabled Adults In Their Parenting Role. Members
felt it would be useful to find out how many social services
departments in England had policies/protocols that cover disabled
parents and how far these seemed likely to address the concerns raised
by the inspectors and by disabled parents. The request for information
specified parents with physical and sensory impairments and/or parents
with learning disabilities to avoid duplicating work carried out by
the National Institute Of Social Work (Alcohol, drug and mental health
problems: Working with families by Patricia Kearney, Enid Levin and
Gwen Rosen).
The responses
Responses were received from 125 departments (82 per cent).
Thirty-one departments (25 per cent) sent copies of policies and/or
protocols. Most of these were drafts or in the early stages of use and
review. A further 29 departments were currently undertaking work or
had plans to do so. However, 63 departments said they had no plans at
present to develop such documents.
Involving and informing disabled parents
Many of the policies and protocols acknowledged that disabled
parents hesitate to approach social services departments for support.
At worst, parents may fear that their children will be removed from
home. However, few steps were taken to allay and address these
anxieties. Where disabled parents had been involved in developing
policies this was reflected in greater attention to disabled parents'
experience of using services.
Only one department indicated that it had written information
specifically for disabled parents; several others said they intended
to produce something. Good practice here would be to provide
information that explains service entitlements; informs and reassures
parents; is in accessible formats and appropriate languages; and is
widely distributed in places that parents go to, as well as places
that disabled people use.
Disabled parents' entitlement to services
Many policies and protocols expressed a clear intention to support
disabled parents and their families. However, there was much less
clarity about the legislative routes for supporting disabled parents.
This was especially evident in relation to adult community care
legislation. Nearly two-thirds of the respondents and named contacts
across the 125 departments were based in adults' services. Yet in
terms of the actual content of the policies and protocols, references
to children's legislation, including child protection measures, tended
to be more numerous, specific and forceful. References to adult
legislation and guidance were generally diffuse and unspecific. The
recommendation of the Children Act, also upheld in A jigsaw of
services, that the children of disabled parents should not
automatically be seen as vulnerable and that services to support
parenting may be provided via adults' or children's legislation, does
not appear to have translated into consistent practice.
Restricted access to support
Only a few departments indicated that parenting roles and
responsibilities should be included in eligibility criteria and
assessments for community care services. This presents a barrier for
adults with learning difficulties, mental health needs, physical or
sensory impairments and deaf parents whose personal support needs,
when parenting is not taken into account, do not reach thresholds for
support.
Co-ordinating adults' and children's services
Whether the most appropriate person (adult or child or both)
receives assessment, under which legislation, and at what point,
depends upon timely exchange of information between divisions and
agencies. The SSI inspectors found that in many places adult service
teams failed to record routinely that there were children in the
family whilst children's teams failed to record routinely the presence
of a disabled parent. Although many of the policies/protocols
indicated the need to cross-reference information across divisions,
few appeared to have established mechanisms to ensure this happens at
an early stage.
A climate of rationing and resource limitation can very easily
result in support issues in relation to disabled adults with parenting
responsibilities not being addressed at all, becoming an issue after
problems have arisen, or materialising only at crisis point. At this
stage, study of the protocols suggests, the involvement of specialist
adult services in relation to parent support, consultation, advocacy
etc. rapidly falls away from service agendas. This can have the effect
of alienating parents at a crucial point in their relationship with
service providers.
Charging for services
The way that services are organised and paid for often skews
provision towards existing provision rather than a service response
that creatively addresses actual family needs.
Although a lot of attention was given to deciding who should pay
for what, positive arrangements for cost-sharing across divisions and
agencies received far less attention. In addition, very few policies/
protocols addressed the issue, of crucial importance to parents, of
whether community care services to support disabled adults in their
parenting role should be liable to charges. A small number of local
authorities specified that charges for assistance with parenting
should be waived, whether under community care or children's
legislation.
Parents from minority ethnic communities
Nine out of 31 policies/protocols mentioned parents from black and
minority ethnic communities. Only three of these mentioned specific
measures: one included questions on ethnic origin in a planned survey
of disabled parents; one included advice on challenging discrimination
and harassment; and a third referred to language interpretation
services.
Innovative ideas and good practice examples
Several supportive measures were outlined in the policies and
protocols received. These included:
- Establishing routine and co-ordinated
procedures for the early identification of disabled adults with
parenting responsibilities, with a view to addressing support needs
at an early stage.
- Inclusion of parenting tasks and roles in
eligibility criteria and assessments for adult community care
services, itemising the sort of activities this could include.
- Ring-fenced pooled budgets agreed by adults' and children's
divisions to support disabled parents who would not otherwise meet
standard thresholds for services.
- Promoting direct payments (including joint-funded packages across
adults' and children's divisions) for disabled adults to purchase
assistance with parenting.
- Waiving charges for community care services to support parenting
on the basis that the aim is to prevent children from becoming
children in need.
- A new development post to foster a co-ordinated inter-agency
approach to supporting disabled parents (involving disabled parents,
social and health services, education, mainstream parent support,
housing etc.), through developing co-ordinated training, joint finance
and compatible protocols.
- Practical arrangements to ensure that adult services provide
specialist support, advocacy and counselling to parents in cases where
children's services are involved, and that support for disabled adults
in their parenting role remains on the agenda even where child
protection procedures are underway.
- Stipulating that a 'young carer' assessment must automatically
trigger a community care assessment of the disabled parent's support
needs.
- Making it clear that no disabled parent should be obliged to rely
upon a family member for inappropriate levels of assistance or for
help with inappropriate tasks.
- Appointing a specialist worker dedicated to supporting disabled
parents through liaison between specialist adult teams, any existing
'young carers' provision, and children and family teams.
- Involving disabled parents as advisors and partners at every
stage of policy development and service review.
- Preparing accessible service information specifically for
disabled parents.
Conclusion
This research has shown that whilst there is a growing commitment
to meeting the needs of disabled parents as a distinct group of
service users, supportively and in a co-ordinated manner, there are
unresolved issues regarding the best way to develop work across
adults' and children's divisions; how to design services that offer
timely and appropriate support; and how to foster co-operation between
relevant agencies.
Whilst both community care legislation and the Children Act can be
used to support disabled parents, the researcher concludes that the
potential for holistic, timely and appropriate family support can only
be realised where the role of supporting parents in safeguarding the
welfare of their children is understood and steps are taken to uphold
the entitlement of disabled adults to assistance with parenting tasks
and responsibilities.
The researcher suggests that in addition to good practice measures
at local level such as those outlined above, the following measures at
national level could help local authorities in developing and
implementing joined-up strategies to support disabled adults in their
parenting role and in this way safeguard and uphold the welfare of
children:
- Clarification of the need to ensure that parenting tasks and
roles are routinely covered within community care assessments and are
eligible for specialist adult services.
- Developing guidelines and good practice materials nationally in
conjunction with disabled parents and their organisations to show how
specialist adult disability services can work with children's services
using both community care and children's legislation constructively to
support disabled parents and their families.
- Targeting resources to support the development of work across
social services divisions and between relevant agencies, with the
intention of establishing a long-term and sustainable basis for
funding services to disabled parents and their families.
- Using local reviews and service audits to boost development of
services to this group: e.g. by asking the number of disabled adults
who have been assisted in parenting tasks and responsibilities.
About the project
At the end of November 2000, a letter was sent out from one of the
Department of Health observers working with the Task Force, to the
directors of all social services departments in England, requesting
copies of policies, protocols and service user information for
disabled parents. One hundred and twenty-five departments responded.
In addition to examination of documents, letters and notes that came
back with the responses, telephone calls with some of the respondents
were incorporated into the analysis.
How to get further
information
The full report, Supporting disabled
adults in their parenting role by Michele Wates, is published for
the Foundation by YPS (ISBN 1 84263 041 5, price £14.95).
Click on the 'order report' icon in
the left margin to order online.
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