My son was diagnosed with DMD in October. I connected with a friend of a friend through Facebook, whose son also has DMD. She lives in South Carolina and is getting Medicaid for her son through the TEFRA waiver (a waiver that allows parents of kids with disabilities to get Medicaid even if they make too much money to qualify). I looked online and found out that we don't have that waiver in VA. So am I just out of luck trying to get any assistance for my son through the government? Has anyone in Virginia or other states without TEFRA gotten Medicaid or other government assistance? We have health insurance, but it has left a lot for us to cover out of pocket. I contacted my local Medicaid office, but they just said they can't tell me on the phone if I would qualify and I just need to go to the website and apply. I don't want to waste my time with an application if there is no chance of getting it approved.
Is it possible that it is called something else in your state? Here in Idaho we have the same program but here it is called Katie Beckett. Good luck!!
Look at the IFDDS waiver. http://www.dmas.virginia.gov/Content_pgs/ltc-wvr_ifdds.aspx
It mentions muscular dystrophy. I didn't read through the whole thing, though. It might not apply.