Creating suitable respite services for younger disabled adults with life-limiting conditions

First of all, I set up an online petition in mid-May through the website “38 Degrees” about creating suitable adult respite facilities, and there was a positive response. By mid-August there were 1100 signatures, which is quite a lot in just 3 months, and this shows just how important an issue this is, because so many people feel very strongly about it.
Next, my parents and I contacted our local MSP Derek MacKay about the issue who passed the issue on to Michael Matheson. Mr Matheson's response was not at all helpful. He seemed to focus purely on the needs of carers, when the issue we have is centred around the needs of the parent's disabled sons/daughters. He talks about my parents contacting the Princess Royal Trust for Carers for them to get a break, but this doesn't solve the fact that there are no suitable respite facilities for me to go to, so where am I supposed to go while my parents are away somewhere having a break? He says that arranging and funding adult respite care is the responsibility of the local authority, but they cannot arrange and fund respite care when there are no suitable respite care facilities available – that is the point we have to keep repeating.
We then replied saying how unhappy we were with his response, and we then received a letter from the Health Minister Alex Neill. But again, Mr Neill just seems to focus on blaming local authorities, when really the government should be stepping in to deal with this issue. He also talks about “supporting young people to successfully prepare for their transition to adult services”, which again seems to ignore the fact that there are no suitable adult services to transition to!
Myself and another member of the YAC wrote a letter on behalf of a number of disabled young adults to the Muscular Dystrophy Campaign (MDC) Chief Executive Robert Meadowcroft to tell him about this issue, and he replied to us agreeing that respite services are desperately needed for many people like us and our families. He assured us that the MDC will use their campaigns resources to address the need for access to hospice services and to influence parliament. They are keen to work with the YAC on this issue, but they also say that they need political support if this issue is to be resolved. They raised this issue at a recent Cross Party Group meeting on Muscular Dystrophy held at the Scottish Parliament, and Jackie Baillie has agreed to take these concerns forward. They are keen, as we are, to raise this issue as a subject for a formal debate in the Parliament.
I raised the issue of adult respite at an Action Duchenne lobby of Parliament in June, and afterwards Jim Eadie expressed to me that he would like to assist with this issue, as did Jackie Baillie. Indeed very recently the whole YAC was able to have a meeting with Ms Baillie where she reiterated her support of our campaign, and she gave us a lot of information on how we take our campaign forward. Having raised awareness through my petition, Ms Baillie feels that the only way we can take the campaign to the next level is to get political involvement, and she agrees with us that this issue really needs to be debated at parliament, to gain media interest which in turn will really raise the profile of the campaign and the issue of adult respite. Jackie Baillie and Jim Eadie have also now agreed to work together on this issue.