It is really important for the "consumer voice" to be heard. Whether you are an adult with SMA affected by changes in benefits directly, or a parent or carer of a child whose needs affect your working life, it is really important that your situation is acknowledged and understood by policy makers and commissioners. A Jennifer Trust member has drawn our attention to a petition started by the Disability Charities Consortium. There is also a group called Every Disabled Child Matters campaigning for a better financial deal for carers and families.
The Department of Work and Pensions (DWP) and Department of Health (DoH) jointly published a Green Paper called Shaping the Future of Care, in July 09. It set out Government plans to get rid of Attendance Allowance, and the possibility that the care component of Disabled Living Allowance could also be scrapped.
An e-petition was started by the Disability Charities Consortium on the 6th August and is being signed in opposition to any possible cuts in DLA as a consequence of the Governments green paper on Care. By 9th October 14,411 people had signed.
Check on the links below for more information:
If you wish to sign the petition, you have until December 7th to do so. | 
