Our Conference 2001 was held on Saturday 20th October at the Southville Centre, Bristol.

The agenda focussed on Phillipa Harpin's work for the MD campaign with regard to modifications to the home environment, equipment, and how to obtain funding, with input from the MDC Family Care Officers.

Phillipa's presentation first covered how the individual's needs should be assessed. Needs come first and budgets second. Occupational therapists are employees of the Local Authorities and often put budgets before peoples needs. It is important to plan adaptations in good time. Authorities need to know the strain the family is under. The legislation specifies that adaptations should give, as near as possible, the same freedom of access as for an able bodied person. E.g. a disabled person needs to be able to open/close a door independently.

Phillipa mentioned that she had written a manual that covers all legal and practical aspects of home adaptations and equipment based on her many years of experience. The manual costs £10 to MDC members, its first printing is now almost sold out.

During the lunch break we examined displays of home adaptation equipment by Astor Bannerman and vehicle modifications by KC Mobility.

After lunch Phillipa talked about the Disabled Facilities Grant and the two Family Care Officers, Jan Smith (Bristol), and Jane Stein (Oxford) discussed their role.

FCO's are employed by the Muscular Dystrophy Campaign. They provide information regarding neuromuscular conditions and support services. Families are referred via clinics or via self request.

Insurance was discussed and names were requested for Insurance Brokers specialising in offering insurance for the disabled.

Members have experienced problems with obtaining the Disabled Living Allowances, the FCO's will help as it is important to use the correct words and to complete the forms appropriately.

Later there was an open discussion during which regrets were expressed at the paucity of research programmes aimed at FSH.

All were concerned that FSH is felt to be one of the less important dystrophys by the MDC.

For a full report on this conference please see "Newsletter 7" from the main menu.