DSA and Parents meet with DWP regarding DLA

Monday, 17 January 2011

Twelve families were able to attend the meeting on Saturday to discuss the proposed reform to DLA. We had an open discussion during which parents asked Fiona a number of questions and raised their concerns. She then spoke to individual families. Fiona said that the new reform was at the consultation stage and she was keen that families respond either directly to the DWP or through the DSA. She said that the more evidence families presented the greater the opportunity to influence the policy. Details of how to do this are below:

• Send it to Fiona at This email address is being protected from spambots. You need JavaScript enabled to view it.    
• Send it to us to be included in the DSA response to This email address is being protected from spambots. You need JavaScript enabled to view it.    

For details of the consultation please click here 

We ask that if you choose to email the DWP directly, can you also send us a copy - This email address is being protected from spambots. You need JavaScript enabled to view it. .   We would like to include your views in the appendix to our response.

Main areas of discussion

• Parents told Fiona about the many additional expenses that must be met for a young person with Down's syndrome to achieve an independent life and how vital DLA was in supporting this. They spoke about the demands of a caring role and the difficulties of combining work and caring.

• Families were concerned about the proposed face to face interviews and the value of these for people with DS.

• The onus upon families to provide information about their son/daughter would be difficult and costly. Doctors and other professionals often request payment for reports.

• People were happy that the assessment should look at activities like the ability to plan and make a journey and understand and communicate with others. They were concerned about the practicalities and cost of gathering the information necessary to make a judgement. Would the cost lead to poor assessments?

• Families felt frequent reassessments would be costly and unnecessary. Fiona said that the frequency of assessment had not been fixed and evidence she received would help in deciding the best time scales.

• Families felt the assessment process daunting and soul destroying and wondered if assessments from ESA and DLA could be combined. Fiona commented that the assessments were looking at different issues, and that it was not likely the two could be combined.

• 6 month qualifying period. The new reforms will not affect those younger than 16 or older than 65 at the moment. If the new benefit were extended to children families were concerned that newborn babies with medical complications would not have the support they needed at a very difficult time.

When Fiona left we gave her report containing responses from families who had wanted to contribute but were unable to come.

All responses must be sent to the DWP by Monday 14th February 2011.