The Family Information Group has been working in the community, since 1997, raising awareness of the issues affecting families of disabled children. This is done through conferences, workshops, video, awareness sessions, publications, consultations and working with others in partnership. Awareness sessions are based on the concept that the impact of disability on the child, affects the whole family and wider community, not just the child.
For those who work with families, in whatever setting, these sessions give an insight into that family experience and for those who have an interest in “user involvement”, they give a unique insight of another view or perception.
Housing
For all families of disabled children, housing is a critical issue. Research has shown that if housing provision is right, then this can alleviate many of the other problems/issues associated with disability. Housing however is not just about bricks and mortar, but about people, the people living in the house. If positive relationships can develop between the occupational therapist, housing official and the family then what is often a stressful process (the adaptations process), can be more productive for all involved. These sessions, by giving an insight to family life, could help make this process more positive.
NIHE
At a local level the NIHE have been engaged with the Family Information Group since the group began operating. In recent years it has been engaged at a regional level. Staff from NIHE have presented at seminars run by the Group, provided information and regularly attended conferences that the Family Information Group have organised. NIHE have been very open at sharing non-confidential information. Dramatically the NIHE Grants office in various parts of NI played a key role in providing evidence with occupational therapists, which eventually led to the abolition of the means test on parents of disabled children in NI. (This is used as a case study in these sessions, to show how partnership working can change things). As an opportunity to gain a family insight, this session should be of interest to all staff, particularly those who work directly with the public.
The Session
This is two hour session (with a short break in the middle). During this time Brendan Mc Keever, Facilitator for the Family Information Group, will take participants through the journey of a parent. By sharing experiences, discussion and using video it is intended that participants will get a “user” perspective, which will hopefully help staff when dealing with parents. Issues such as inclusion, ability not disability, seeing the person not the disability, will challenge some of our own ideas about disability and how we should meet peoples’ housing needs. It is hoped that the feature (on video) of the housing campaign will be of particular interest to NIHE staff, particularly those who had been involved locally in gathering evidence.
Issues covered: Diagnosis and Disclosure
Ability/Disability and the Person
The Family
Partnership Working
The unheard voice
Session to NIHE Grants Staff - 24 April 2006
Introduction
The Family Information Group, over the years, has developed awareness sessions on what they refer to as “the family view of disability”. This is simply the impact on a family of living with and caring for a disabled child. In its experience, the Group believes that any realistic attempt at “user involvement” must include the perspective of the parent, disabled child and siblings. Also any attempt at inclusive working, should also be aware of the issues affecting families in these situations, as well as many other factors too.
The sessions have been taken up by many different organisations, both in the voluntary and statutory sectors, and generally have been very well received. All these sessions are evaluated, to ascertain can nay improvements on delivery be made as feedback, evaluations and the monitoring of the sessions are vital to the development of the Family Information Group.
Information on feedback from the Richmond Chambers event are featured in this report. However we would suggest that you should also check with participants and with William Carlin (Grants Manager) as to the value of the presentation, perhaps after those attending have some time to digest the views expressed.
The information below is based on the replies from the ten participants that took part in this session.
It is acknowledged, from the outset, that this session was only the introduction of some of the issues that affects families of disabled children. However it has to be stated that the core issues of: the value of parents’ experience, the importance of engaging the disabled child, the distinction between ability and disability and the value of partnership working were all featured.
Summary
100% (all ten) felt information was well presented. As the Family Information Group prides itself in trying to deliver information in a relevant and accessible way, we are very pleased at the response to this key question.
100% felt they had a better knowledge of the family view of disability as a result of the session. This again is a very powerful positive response.
100% of participants would encourage others to participate in the Group’s events. As much of the reputation and knowledge of our work, is passed on by word of mouth, again it is very encouraging and positive to have such a response to this particular question.
Feedback from these specific questions is vital in our Group’s analysis of the effectiveness of these type of presentations. We are very pleased from this information. However to have most of the participants acknowledging that the information was useful and well presented, that they have a better knowledge of the subject and would encourage others to participate in the group’s events, is very encouraging indeed.
In all sessions, questions, discussions and debate are encouraged and participants are encouraged to challenge the presenter. This often gives an opportunity to look more in depth at issues. In this session certainly there were challenging discussions, different perspectives given, and attempts to relate some of the issues directly to specific work situations. It was a very healthy and informative discussion.
Besides presentations to Chartered Institute of Housing, COTSSIH, the Steering Group of the Fundamental Review, and our own Group’s housing events, this was really the first opportunity to deliver such a session to NIHE staff and to acknowledge their role in changing government policy on the abolition of the means test. Personally it was initially a daunting task, but in the end it turned out to be very rewarding and I am genuinely pleased by the positive feedback.
28th April 2006
Feedback
Below are comments made by the participants who attended the session. They give a very clear picture of how they felt about this awareness training:
- It was excellent. I didn't realise that so much had to be done to abolish the means test, also the work to a home must be very heartbreaking for parents.
- This type of presentation allows you to view the problem, from the person's perspective.
- I feel this is a useful way of putting the parent's view across and should be taken to other departments working with disabled.
- I feel it was valuable from a person's point of view of the disabled client.
- It gives an insight into the other side - the disabled person/family.
- Family Information Group has always tried to see both sides i.e. disabled person and the housing controls/rules.
- Well presented by person with first hand knowledge and experience.
- More people who have children with disabilities should be made aware of grants to adapt houses - through doctor's surgeries etc….
- It was very worthwhile.
- I will try to understand disabled concerns during initial inspection.
- I found the discussion very enjoyable, very well presented by Brendan.
- Very moved and humbled by what is taken for granted.
- The course was very good and presented by Brendan in a down to earth way.
