CYP(3) PAP 11

Children and Young People Committee

Inquirty into Parenting Action Plan

Response From Disabled Children Matter Wales .

This response is submitted by the Disabled Children Matter Wales Campaign. The DCMW campaign is led by four leading organisations working with disabled children and their families, Children In Wales, Contact a Family Wales, Learning Disability Wales and Mencap Cymru.

The campaign is supported by a wide range of charities and voluntary organisations across Wales. People who work with disabled children and young people across the statutory sector also support the campaign across Wales, as do parents of disabled children and disabled children and young people themselves.

The Disabled Children Matter Wales Campaign wants disabled children and young people to have the same everyday opportunities as other children and young people. This means:

• The Right Information At The Right Time  
• A Real Choice In Education  
• The Health Services They Need To Live An Ordinary Life
• Access to Play and Leisure 
• A Say In Planning The Services They Receive
• Access to Community Facilities
• Enough money to live on

Delivery of the Parenting action Plan

How effective do you consider the implementation of the Parenting Action Plan to have been?

The Many of the action points to the Parenting Action Plan have not been completed or only partially completed.  In looking specifically at support offered to the parents of disabled children and young people, the DCMW campaign would like to raise the following issues.  

While the Parenting action Plan made reference to support for specific groups of parents, including parents of disabled children and young people, any support for this specific group of parents was outlined in terms of NSF targets. However the Children’s National Service Framework Report 06/07 shows that services for disabled children and their families are consistently the weakest area of service delivery across Wales

In response to specific actions, DCMW would note that the only actions where progress have been made relate to

The Welsh Assembly will develop and distribute a series of booklets for all new parents in Wales supplementing the existing 'Pregnancy Book’ and 'Birth to Five’ books.

The Assembly Government has sponsored three booklets for parents, which have been developed by Children in Wales. The first booklet has been distributed to parents of Year 1 pupils through schools.  The other two booklets have been distributed via health visitors. An additional print run was also produced. Copies have also gone to CIS, Flying Start, Children’s Partnerships and Pupil Referral units within Local Education Authorities. Although the booklets have been well received, there are ongoing problems with distribution. Children in Wales are still receiving enquiries about how to obtain copies.

The Welsh Assembly will set up a Working Group to consider the Beth Johnson Foundation report on grandparents in Wales and propose an outline Programme of Action.

A small Working Group on Grandparenting met three times, and produced a short report with recommendations. The report had 18 recommendations; unfortunately WAG has no plans at present to implement them. The WAG has commissioned a Welsh version of the Family Rights Group document "Wider Family Matters: a Guide for family and Friends raising Children Who Cannot Live With Their parents”. The document however is not (in it’s current form), in our opinion in a readily accessible format for families. We have been given to understand that at the present time there is no funding available to produce a user-friendly version.

In 2006-07 the Assembly funded a training programme at University College Bangor to extend the scope of the Incredible Years programme. The training was funded through top-sliced Cymorth funds.

The original package was 10 places for 12 Partnerships (120 places in all).  WAG also purchased the packs for delivery of the training for each Partnership. Unfortunately not all of those trained have utilised their training because they have not been released from their jobs to run the groups with parents, also not all those with training have experience of working with groups of parents.

The Welsh Assembly has also agreed to contribute funding to an evaluation of the Family Links Nurturing Programme, which is being coordinated by Cardiff, Newport and Torfaen Local Authorities.  This programme is used extensively by a number of Local Authorities in Wales.

The Welsh Assembly will commission a practice guide to be produced for Partnerships on parental participation and empowerment. Jayne Isaac was seconded from NCH Cymru to the Children’s Strategy Division to produce the practice guide which was distributed from September 2006 and is available to download from Children in Wales’ website. Although we welcome the practice guide, there are currently no mechanisms for reporting on how, or whether, the recommendations are being implemented.

While progress on these action are welcome, the Disabled Children Matter Wales campaign are concerned that there are many actions that have not been addresses, and may now be lost, and that few of the actions address that additional challenges faced by the parents of disabled children and young people.

Has the amount of support available to parents increased?   

In some geographically specific areas of disadvantage more services are available. These are very discrete areas and for specific age ranges or for parents who have specific issues and are referred by health visitors, social services or other agencies. For example increased services have been provided through Flying Start, Integrated Children’s Centres, On Track, YOTs and in some Communities First areas. Very few services unfortunately are available to parents as a universal service.

There are still significant gaps in service provision for parents of disabled children and young people, projects that have a geographical focus do not consider that the issue that disabled children and their families are not always living in 'target’areas.

There are also identifiable gaps in service provision for parents of older children (teenagers), parents who are themselves disabled, parents within the BME community and Fathers. As a result many parents of disabled children and young people find themselves in a "double bind” in relation to parenting support.

Is support accessible to all parents, and is support getting through to the parents who need it most?

Services are very rarely provided to parents universally.  Support tends to be targeted to those in very tight geographical areas identified as being of high disadvantage or targeted to parents identified as in crisis.  

Parents of disabled children may not live in these specified areas, and where they have an opportunity to access parenting support, the generic services training does not address the specific needs of parents of disabled children

Support to the parents of disabled children is generally provided by organisation focusing solely on disability issues, such as Contact a Family, or by a disability specific organisation such as RNIB

However it should be noted that even when support is available parents of disabled children face a host of additional challenges in terns of access such as

• Caring responsibilities feel too complicated and demanding, and parents do not have the capacity to access support .
• Lacking of practical support such as childcare or transport means that parents are unable to attend events or planning meetings.

Do parents receive more information, and is positive parenting effectively promoted?

Information for parents of disabled children in provided by many disability organisations, covering a wide range of topics, but we are unaware of any information for parents of disabled children on the issue of positive parenting.

Do parents participate more in planning services and in schools?

For the parents of disabled children and young people, parent participation is at different stages of development across Wales, and it is difficult to give an accurate picture if progress to date.

Participation can be seen as challenging for both parents and professionals.

Parents may face barriers such as: -

• Caring responsibilities feel too complicated and demanding, and parents do not have the capacity to engage in a participatory process.
• Lacking of practical support such as childcare or transport means that parents are unable to attend events or planning meetings.
• Being put off by language or jargon used
• Worrying that they will be seen as obstructive or demanding and that their child’s services will suffer
• Feeling unable to further challenge a system that has proved unhelpful and resistant to compromise.
• Feeling that they have expressed their views previously but these were not heard or responded to.

Children in Wales’ survey in 2006 of parents and school governors ("Parents and Schools - Making the Connection”) suggests that parents would like to be more involved in their children’s school. The survey showed that some schools actively encourage parents’ involvement but that this was very dependent on the good will of the headteacher.

The survey found that in relation to parents of disabled children

• Sixty-seven percent of parents whose child had a disability also had no involvement with their child’s school. The following quote may illustrate some of the difficulties parents of disabled children face: "I could not get involved as much as I would have liked because I was spending a lot of time sorting out my child's statements and even tribunal which was exhausting and took up quality time even in our school holidays ….” Mother, primary-aged mainstream educated disabled-child, location not known
• Disabled children in special schools often live far away from the school as is illustrated by the following quote from a parent whose child attends a special school: "Can't get to the school”, White Mother, primary-age, disabled child, Neath Port Talbot
• Twenty-seven percent of parents whose child has a disability always found it easy to approach their child’s school and 73% sometimes found it easy to contact their child’s school.

Are you aware of barriers experienced by parents in accessing support services and information sources? What are the key reasons for these barriers?

Barriers differ for mothers and fathers, depending on the age of the children, the geographical location and the services available. The barriers experienced by parents in accessing services are transport (particularly for parents on low income and living in rural areas), stigmatisation (because services are targeted and therefore seen as being for 'bad parents’), resources (both of providers and of parents accessing services who need childcare etc) and fear surrounding domestic violence (fear of providing services for or a lack of services for the abusive partner). Health Visitors may refer parents or parents may self-refer but sadly services are not always available for that parent unless they are living in the right location to receive targeted services or their issue is identified as sufficiently acute to receive support (such as a child protection concern or where a parent has received a parenting order).  A lot of parenting education is through groups but not all parents feel comfortable joining such groups.

For fathers the barriers here in Wales are probably the same as those identified in England; services that are insensitive to their needs, that do not adequately connect with the context of their lives and motivations; an overtly female focus amongst staff and service users, and a lack of confidence to explain to female service users why it is important to engage with fathers; and finally staff underestimating the significance of a father’s involvement if he is not visible to the service, or living with the child.

There are also barriers relating to the working hours of support professionals, these often do not fit with the times working parents are available to access services.

Can you provide any examples of innovative practice in ensuring that services and information is accessible, and barriers can be overcome?

See information in examples of good practice below.

Continued work on Parenting

What do you consider to be the key parenting issues still needing to be addressed by the Welsh Assembly Government?

Universal services for the parents of disabled children and young people at times and places which meet their needs

Childcare is highlighted as a key issue.  In order for parents to join in with parenting courses they need childcare if they have younger children. Sometimes it is difficult to find suitable venues to provide childcare, which limits the number of venues that can be used.  Buying in childcare can be expensive and there are often time limits on it

A Parenting strategy for each local authority can help to identify gaps in provision and coordinate services for parents, including the needs of parents of disabled children .

In England there is a Parenting Academy that highlights good practice and explores 'what works’ in parenting support and develops training and support materials for parenting practitioners. A similar set up in Wales would provide leadership to help promote quality provision, provide a focus for parenting services and coordinate activity across Wales.

Current policies tend to be centralised (such as Flying Start and ICC) and therefore can fail rural communities.

Polices have to be inclusive; the target cannot only be those living in disadvantaged areas since parenting problems exist in all levels of society.

The Parenting Action Plan had limited resources attached to it.  A proper Parenting strategy is needed with sufficient resources and a mechanism for measuring impact and ensuring that policy follows through to implementation.

What has worked and hasn't

Examples of Good Practice

Contact a Family organises workshops and conferences for parents based on local interest. These are an opportunity for parents to come together and share their experiences. Previous topics have included the needs of siblings, transition and challenging behaviour.

The Contact a Family Group Action Pack consists of a series of guides for parents' groups on topics such as starting new groups, developing existing groups and setting up websites.

The National Autistic Society develop and run parent courses and training to help families help and understand their child and to encourage them to reach their potential.

Mudiad Ysgolion Meithrin Referral Schemes in Wales, aims to ensure that children with any additional needs receive the required support to participate fully in their local 'cylch meithrin’- playgroup.These Schemes are managed by Mudiad Ysgolion Meithrin; the Mudiad together with other agencies or by the Wales PPA and operate an open referral system i.e. a parent can contact the Coordinator directly if they have concerns about their child’s development or alternatively the 'cylch’s SENCO can make a referral with the parents permission. Individual professionals within the local community can also make a referral e.g. Health Visitor; Speech and Language Therapist; Pediatricians etc. which ensures a consistent cross agency approach to meet the needs of the individual child.

Each 'Referral Scheme for Children with Additional Needs’ employs a Coordinator who has the responsibility for liaising with the child, family; the local playgroup and the other statutory agencies involved. The level of support offered to the family, child and group will depend on individual needs and circumstances but can include:

• Funding for an extra assistant
• Provision of transport to and from the group
• Equipment
• Payment of fees
• Training

However the referral schemes operate in very different ways e.g. the Referral Co-ordinators are employed for varying hours a week and the Schemes receive varying amounts of finance from different sources. The combination of these factors results in an inequity of service across Wales for children with additional needs.

The present situation with all the Schemes across Wales is that they are unable yet to provide the full five half day sessions that other children are able to access, with many only able to offer a maximum of 10 hours a week support to a child. Those parents wishing to receive child care for their child with additional needs will be expected not only to pay the child care fees but also the cost of the Helping Hands.

The Referral Schemes have the existing infrastructure to provide a high quality service to children with additional needs to access pre-school education in Wales if they receive adequate funding.

This service is crucial in order to ensure that children with additional needs receive the same opportunity to learn through play in the early years. In addition, if they receive skilled and appropriate support at this early age research has shown that they can often move onto the statutory education provision without requiring one to one support. However at present are facing severe reduction in funding from the authorities at a time when the existing legislation emphasizes the importance of equality of rights e.g. The Children’s Act; The Disability Discrimination Act.

Areas of the PAP successfully implemented

There is no evidence that the Parenting Action Plan had any impact on the support needs of parents of disabled children.

Areas of the PAP not successfully implemented

Please see answer to 1.1.  The main issue has been a lack of resources attached to the PAP for its implementation and a clear lead in the WAG to carry forward some of the action points. There is also evidence of a lack of co-ordination within the various divisions of the WAG. It is sad to report that the majority of the Actions laid out in the PAP have not been successfully implemented. As we have explained in our response to Section 1. The reasons for this are various. However, underpinning all of these is the fact that support for parents does not appear to be a priority for the Welsh Assembly, and this is reflected by the lack of resources attached to the PAP.

The original proposals contained in "Raising our Children with Confidence” (Children in Wales 2004), were deemed unachievable within the context of budget constraints, and we were given to believe that the 'watered down’ version which went to make up the Actions contained in the PAP were what were considered realistic by the Welsh Assembly. Unfortunately this has not proved to be the case.

At it’s most basic level it was hoped that the PAP would draw together under a single strategic policy the work of supporting parents in Wales today. Historically this cut across a number of policy areas from Health to Education to Social Justice. Again it is sad to report that support for parents continues to be developed within the Welsh Assembly in an ad hoc manner, without the co-ordination it was hoped the PAP would provide.