One of the most annoying things I’ve found about advocacy is that unless you are involved with a formal, fairly well-known, group, than no one really cares what you have to say. Believe me, I’ve written letters and e-mails to my government and I either never get a response or I get the standard letter.
One of the biggest issues affecting my state, South Carolina, is drastic budget cuts. “They” want to whittle the budget down to only have residential treatment: no job training, no in-home services, etc:
“The state of South Carolina has proposed eliminating all services for children with autism and other disorders. Most services to autistic adults will be eliminated as well. This will be devastating to families. These families need your help.
This is an emergency. You can help by contacting your state legislator (click here for an easy way to send them a message: http://ow.ly/1cNOf ) and asking them to fully fund the Department of Disabilities (DDSN). Ask them why they are cutting the DDSN budget so much more than other agencies and why the legislature is unwilling to increase cigarette taxes to pay for these services. The cigarette “tax” is completely voluntary. If someone doesn’t want to pay it, then don’t buy cigarettes, you’ll be healthier for it. Unless the tobacco industry is paying off legislators this is a no brainer.
Besides the loss of services there will be tremendous job losses if this proposal goes through. Therapists working with children will have their jobs eliminated. Parents who rely on day services will have to quit their jobs to stay home with their disabled children and all this will cause unemployment claims to rise, costing you, the taxpayer money. On Wednesday hundreds of families will meet at the South Carolina Statehouse to bring the message to lawmakers. If you can come please do. But if you can’t please call, email or fax your legislator to ask that they fully fund programs for people with autism.
Again, the easy link for finding and contacting your legislator is http://ow.ly/1cNOf.”
If anyone reading this lives in South Carolina than please find and contact your legislator to stop the drastic budget cuts.
As a person with HFA I already don’t get help. But with these budget cuts the LFA won’t get the help they need either expect in institutions and most have the ability and desire to live outside of institutions.
Another (local) interest of mine is the Pattison Academy, a school for children with severe and/or multiple disabilities. The academy is working on making the school serve students year round since in the summer months they don’t get the help they need to live the life they should. Most know that I have a special interest in those with severe/profound and/or multiple disabilities. You can visit their You Can Help section to find out ways you can help. Unfortunately, I can’t do much because I don’t have any money to spare but maybe someone else reading this will.
The last thing for this post is something called the Team Advocacy Project. In their own words,
“Using a survey tool, the Team Advocate and volunteer(s) inspect the facility for cleanliness, safety and quality of life issues. Volunteers are trained to ask themselves “Would I like to live here?” The volunteer will then interview residents while the Team Advocate reviews the residents’ records and medications. A meal will also be observed. An exit interview with the administrator will occur before the Team Advocate and volunteer(s) leave the facility to note items of concern. If any serious concerns related to a residents’ immediate health are present, the appropriate authorities will be contacted within 24 hours.”
This is something that I think I am going to do for obvious reasons.
One of my desires is to go back to the first institution I was housed in and write a report. I wonder if the conditions are still the same or if they have improved at all…the institution is about two-three hours away, though, so I am unable to gain access at the moment.
Tags: Advocacy