Enabling parents to get the help they need

Survey tells how we can provide the support young people and their families urgently need, writes Jan Savage

TWENTY people out of every 1,000 have a mild or moderate learning disability, government statistics estimate. This means around 120,000 in Scotland – and this figure is rising.

According to the 2011 census there are approximately 1.2 million children and young people under the age of 19 years in Scotland. Using this 2 per cent figure approximately 24,000 children and young people will have a learning disability.

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Enable Scotland was keen to explore the extent and nature of challenges faced by the parents of children diagnosed, or being diagnosed, as having a learning disability.

More than 100 parents replied to our online survey, and in-depth interviews were conducted with parents or primary carers, professionals identified by the parents as making a positive change in their journey around the period of diagnosis, and the young people themselves.

The study came up with several interesting and many unexpected findings.

It shows that, in a significant proportion of cases (around 40 per cent), the parents are unaware of their child’s developmental issues. They are made aware of these by professionals, relatives or friends.

Firm diagnosis is seen as a gateway to support and services. However, the route to diagnosis is tortuous, and parents are provided with little or no targeted information or advice on benefits or social work support.

The study also found the time taken for a diagnosis varies with the condition. For Autism spectrum disorder (ASD), the mean period was found to be 36 months, and for global developmental delay (GDD) 25 months.

Parents with children identified with GDD are far more likely to find the route to diagnosis unclear in comparison to those diagnosed with other known conditions.

We also found information provided to parents is often generic and not tailored to the needs of the specific family. And filling in forms to access benefits and social work support can be traumatic for parents as they are asked to specify “what the child cannot do”.

But parents who had a social worker allocated to them were very happy with the help and support they received.

In terms of general engagement and support, the education sector was found to be most involved in the period around the diagnosis. On the other hand the current level of involvement of the voluntary sector in supporting parents was found to be very limited.

Across the sectors, professionals agreed diagnosis helps people access support and services, and said that parents can take a long time to accept a diagnosis of a learning disability.

Professionals have a dual role, providing support to the child as well as to the parents. Many revealed it could be difficult to balance the need for an honest appraisal with the need to be sensitive when discussing the child’s situation with the parents.

Cross and interagency working and involving parents were seen to have a positive impact on the child and family.

The young people we talked to who have a learning disability feel that having a firm diagnosis had not only helped their family and friends understand them better, but also helped them understand themselves better. All the young people interviewed had a very positive outlook to the future.

So where does that leave us? Taking on board these findings, we are making a number of recommendations.

1 – The role of the named person should be strengthened for learning disabilities.

2 – Recognising that the route to diagnosis could take some time, if at all, the support available should not be dependent on the child having a firm diagnosis and guidance should be clear that cause for concern could be considered a risk to wellbeing and trigger a child’s plan assessment

3 – The parent and/or a sibling as a carer should be assessed for need and provision of support through the Carers (Scotland) Bill.

4 – Multiagency staffshould receive mandatory training on learning disabilities and ASD

5 – A clear support pathway should be developed.

6 – The voluntary sector should become significantly more engaged in supporting parents.

By taking these steps, we can ensure that parents feel supported in what is often a confusing, emotional and stressful time and the young people themselves continue to receive the care and support they deserve.

• Jan Savage, Enable Scotland’s Director of Campaigns and External Affairs