- written by Beth Mellor, Care for the Family Parenting Additional Needs Project Assistant

Care for the Family is a national charity which aims to promote strong family life and to help those who face family difficulties. We seek to strengthen marriages, support parents and help the bereaved. We do this through events, resources, training and networks of befrienders.

As part of Care for the Family’s Parent Support Network, Maggie Stapleton and I coordinate the Additional Needs Project which provides befriending support for parents caring for a child with additional needs. We each have a child with additional needs and understand the challenges that parents are facing.

Becoming a parent is a life-changing event requiring new priorities and routines, and most new parents will naturally meet other parents where mutual support is established. When a child is born with additional needs, or is later diagnosed, a further adjustment is required and it is harder to find other parents walking exactly the same road as our own families.

The change required is practical and emotional. Emotionally, as parents our dreams for our child’s future may have to change. Expectations will now be different. There can be feelings of isolation and of being misunderstood. For some couples the ability to communicate with each other wanes, as our roles can change and time together disappears. The practicalities often call for time consuming hospital appointments, different schools further from home, and the necessity to plan ahead in every aspect of family life. The impact on our other children can be great.

As a parent of a child with additional needs we can often feel different from other parents around us whose families are now not like ours, but are like we had expected ours to be. Conversations can become strained and artificial as we feel that other parents couldn’t possibly understand where we are coming from. This is when it can be so valuable to have someone to talk to about how life really is now.

I can still remember the first conversation I had with another parent whose child was like mine. I didn’t have to keep explaining and justifying my attitudes or actions, and she never once criticized or condemned. Strangely, off-loading my emotions and sharing practical issues, with someone who had an understanding, really helped me and my relationship with other family members. She and I spoke on the telephone a few times and then emailed each other for years and I will always be grateful for her time and understanding.

I know other parents feel the same way about this kind of support. Here are a few thoughts from parents, who have contacted Care for the Family, about their experience of our befriending support:

• “Talking with another parent in a similar situation helps me to deal with the well-meaning, but often inappropriate comments from other parents around me who just don’t get it.”
• “Being able to voice my concerns and share our family successes has helped me feel more in control and boosted my confidence.”
• “Care for the Family provided a network to help me raise my child so I am no longer just one mum in isolation.”

Care for the Family provides a telephone befriending service which offers understanding, empathy and support. You have the opportunity to say what you really feel and talk openly on the phone to a trained befriender, who is in a similar situation to you and can offer insights from their own personal experiences. You can also receive encouragement by signing up to our email newsletters. Parents in this challenging, and sometimes lonely place, need to know that other have been there too and are available to offer understanding and support.

To find out more about our work visit our website at: www.careforthefamily.org.uk/additionalneeds
Read our latest newsletter at: www.careforthefamily.org.uk/additionalneeds/newsletter
Call us on 029 2081 0800 or email mail@cff.org.uk

In recent months the government has begun a process of announcements of cutbacks in public expenditure. Local authorities who will be receiving lower budget settlements are now under great pressure to deliver services with less resource. We are now experiencing authority after authority announcing redundancies, management reorganisations and an unwillingness to recruit to vacant posts.

As new structures settle down commissioners will be setting their minds on how to make further efficiencies (or should I say cutbacks).

Already there is evidence emerging of officers wanting to reassess the services received by some people with learning disabilities against new criteria. Some are taking the line that the best way to reduce cost is to re-tender in the hope that costs will be driven down. The next few months will be a difficult time for everyone involved in the sector.

But what about the people who receive the services – what do they think about the services that are potentially going to be affected? What consultation will be held with them? Will they have genuine involvement in the decisions that will inevitably impact upon their lives?

They are the most important people and successive governments have been telling us so!    The test has now come – has all that has been achieved and said about people with learning disabilities about them having control over their lives been merely rhetoric?

As professionals we appreciate the difficulties that our colleagues face in dealing with limited resources but at the same time we have a duty to enable people’ views to be heard.

So my question is what do we do if we feel people’s views are being overlooked? How far should we be prepared to go?

Can we take action that is genuinely in the best interests of the people we support without being perceived as protecting the organisation we work for?

Is there a voice for people with learning disabilities? Does anyone really care?