Make it mainstream

There are few handbooks for disabled parents that cover issues
such as rights, benefits and services. So, the Disabled Parents
Network obtained funding from the Department of Health to produce
one.

We started by researching what disabled parents want and need. The
aim was to identify useful sources of information and support in
both local authority and voluntary sectors, and at the same time
find out whether there are areas where parents commonly experience
difficulty. The resulting information is going into the handbook
for disabled parents now being produced.

Disabled parents’ comments showed that family and friends are an
invaluable source of moral support, information and practical
assistance, particularly in emergency and crisis situations. One
parent said: “Over the years you develop a network that can be
drawn on in an emergency. Networks are really, really important.”
The reason for these informal networks, as one parent says, is
because there is “no emergency help available from official
sources”.

Disabled parents described welcomed and unwelcomed interventions
from family members. This shows how important it is that neither
council services nor the voluntary sector should make assumptions
about the availability of family support or about its acceptability
to parents as the main, or in some cases the only, source of
support. The study also reveals that there are assumptions made
about partners – especially if they are self-employed or working at
home – being in a position to step in and help.

Many parents are very positive about the possibilities for peer
support, the research suggests. Parents value being able to get
hold of information and support and pass on what they have learned.
They also like to offer encouragement to others in similar
circumstances.
Disabled parents do not want to feel that they have been sidelined
in relation to mainstream parent education and support. “If it’s
parenting education they’re talking about or parenting support it
should be available via the mainstream,” one disabled parent told
researchers.

Information and support, including specialists, that can be readily
accessed through primary health care and mainstream services are
more acceptable to parents because they are keyed in with the
services that all parents use. Many parents are hesitant to
approach specialist social services in case this is seen as a sign
that they are having difficulties. Assessments carried out by
children’s services are often felt to unfairly question their
capacities as parents. “We wanted help to be mainstream not
special” and “we held back from asking for help because we didn’t
want to get services involved and give the message that we couldn’t
cope” were comments that highlighted the reluctance to go to
specialist social services.

However, many parents are lucky enough to find a professional who
gives them support, information and encouragement. But as in
earlier studies, the picture is mixed. A professional, such as
family doctor, midwife, health visitor, social worker and teacher,
might be picked out by a parent as having played a key role in
providing information, giving good support or indicating useful
sources of help.

Meanwhile, another parent, or even the same parent in a different
encounter, might say that they drew a blank when seeking support
from a professional.

Health visitors, occupational therapists, physiotherapists and
mental health counsellors attracted more positive comments in the
survey than consultants, social workers, housing officers and
educational psychologists.

Direct payments are valued by the minority of parents who have
obtained them. However, one sentiment researchers sometimes came
across was: “Direct payments are fantastic for giving control back
to the disabled person but unless there are proper supports for
users a parent can feel that they are being set up to fail.”

Parents say it should not be a matter of luck whether disabled
parents, often at times of stress and under pressure, are able to
track down information and find suitable support. Mainstream
provision to parents and families should systematically address
disabled parents’ needs. Also services and information aimed at
disabled people should address parenting needs. As one parent said:
“It shouldn’t be down to informal conversations with other parents
and the luck of the draw with professionals as to whether you get
information or not. Information… should be systematically
included in the manuals, in the policies, in the handbooks.”

The government’s Fair Access to Services
Guidance² states that disabled adults’ social
roles, including parenting tasks and responsibilities, should be
covered by community care assessment. Professionals and
organisations in the family and parent support sector are becoming
more aware of their obligation under the Disability Discrimination
Act 1995 to meet the support and information needs and service
entitlements of disabled parents.

Parents are also becoming more aware of their rights under the act:
“You’ve got to know your rights and your child’s rights. For
example, antenatal class, school and so on are obliged to address
the access issues. The good thing about the act is that it gives
you a basis for insisting on your rights.”

The idea of social inclusion remains a fine sounding but
meaningless term unless it is translated into specific initiatives
and practical commitments. The research highlights the need to
develop a more co-ordinated approach to working supportively across
agencies, facilitating disabled parents’ access to mainstream and
specialist services in good time to prevent problems arising. The
need for a planned, joined-up approach is more evident as the
increasing separation of services to children (including the
children of disabled parents) and disabled adults (including
disabled adults with parenting responsibilities for dependant
children) makes it potentially even harder than before to
co-ordinate genuinely holistic provision for families. It would be
all too easy for disabled adults with parenting responsibilities to
go on falling through the gaps.

The survey

The Disabled Parents Network surveyed existing groups and
networks that support parents with chronic illnesses, physical and
sensory impairments, those with learning difficulties or with
mental health needs and disabled parents from ethnic minorities.
The consultation included 120 returned questionnaires, nine focus
group meetings and many informal interviews. More than 150 disabled
parents were involved.¹   

To contact the author, e-mail:
MicheleWates@DisabledParentsNetwork.org.uk 

References  

¹ Disabled Parents Network ,
It Shouldn’t Be Down to Luck, can be ordered (£22
including p & p) from: The National Centre for Disabled
Parents, Unit F9, 89-93 Fonthill Rd, London, N4 3JH, tel 0870 241
0450, or go to the DPN website:  www.DisabledParentsNetwork.org.uk  

² Department of Health,
Fair Access to Services Guidance, DoH,
2002