1. Families and Disability

2. At the beginning… Watch the following video and think about the following questions: What do you think the needs of these parents were How did the parents describe the communication with professionals? What do you think are the implications for professionals? http://www.youtube.com/watch?v=b1_ZxlXoZxY

3. Beresford et al. (2007) Parents’ desired outcomes focused on maintaining or enhancing their personal identity, their physical and emotional well-being, and their skill and knowledge base. They also expressed a desire for a better balance between their caring and parenting roles. In addition to individual outcomes, parents described family-level outcomes including maintaining family life and ensuring the positive adjustment of siblings.

4. Beresford et al. (2007) Parents wanted sufficient practical and financial resources to meet the needs of their disabled child and the rest of their family. Parents also wanted to feel confident about the services they were using and to know that Professionals were working in partnership with them.

5. Needs of parents Main areas of need for information for parents are with regard to: child’s disability services available how they can support their child’s development financial benefits entitled to

6. Needs of Parents Compared to mothers with non-disabled children: Mothers are less likely to be in paid employment. Lower living standards and financial problems Family relationships - high levels of parental distress. Can you think of anything else?

7. Parent’s View Listen to the following interview of parents with a disabled child What do you think are the needs of these parents? What challenges/barriers have these parents faced in terms of service delivery? http://www.youtube.com/watch?v=_1cVrz YvGjY&feature=channelhttp://www.youtube.com/watch?v=_1cVrz YvGjY&feature=channel

8. Strategies Coping mechanisms Social support – in the family and in the community Service delivery – whole family approach A single point of contact with services through a ‘key’ or ‘link’ worker. Needs-led approach which is flexible, family centred and individualised, and provide support that is empowering. Multi-disciplinary team working, emphasising the sharing of information and skills. Recognition of parent’s expertise, the individuality of the family and the importance of parental choice in decision making.

9. Barriers The professional view of the interests of the child may not be consistent with that of the parent. Family needs and responses are affected by socio-economic circumstances, culture, family values and coping styles, age and type of disability of child Adoption of the medical model of disability - emphasises the importance of understanding the role that families, as opposed to services, play in managing their particular situation. Reluctance of family to accept their child has a disability

10. Vicky’s experiences Teenage mother Chenai in special care for 6 weeks Difficulty with attachment as she was unable to hold her Range of different professionals to deal with Often did not understand all the information given to her

11. Vicky’s Experiences Knew their was a difficulty but different professionals were saying different things Had minimal support until there was a diagnosis of Cerebral Palsy Needed to be an advocate for Chenai but did not know how to No key worker professional to organise and co-ordinate services Felt overawed by all the different professionals and the language they used

12. Example “At one point Chenai had three different consultants and they didn’t seem to talk to each other. When I went to hospital appointments, I use to see a different doctor each time. They would spend the first 15 minutes reading through her notes and not talking to me. I also have to attend review meetings at the school. I feel a bit confused at times as they are talking to themselves and don’t seem to include me.”

13. Example “I had moved into my new house and occupational health gave me an appointment to say when they were coming to look at possible adaptations to the house for Chenai. I waited in all day for them, they didn’t come. I rang them up and discovered they had come to my mom’s address. They told me I had to go back on the waiting list. That was 6 months ago and I’m still waiting for an appointment”

14. What about parents who are disabled? Child carers? How might children who care for their disabled parents be at risk of social exclusion? http://www.ofsted.gov.uk/news/children- who-care-for-their-disabled-parents-are- often-unidentified-unsupported-and- without-voicehttp://www.ofsted.gov.uk/news/children- who-care-for-their-disabled-parents-are- often-unidentified-unsupported-and- without-voice

15. References Beresford, B., Rabiee, P., and Sloper, P. (2007) Outcomes for Parents with Disabled Children, Research Works, 2007-03, Social Policy Research Unit, University of York: York. Beresford, B. Sloper, P. Baldwin, S. and Newman, T. (1996) What works in services for families with a disabled child? Barnardos