Those of us that assumed the role of primary care giver, legal guardian and over all provider do our best to ensure our loved ones are loved, happy, taken care of and have equal rights to the best we can.  A family environment is very important not only to our disabled (some SEVERLY disabled) family member but also to the surrounding family members.  It is no secret that as the individual ages, their needs increase.  Taking them to various events requires the assistance of an attendant for practical safety reasons.  Limiting weekly hours to 56 (8 hours per day) is unreasonable at many levels.  

Transportation provided by DMAS is substandard.  The drivers show up when they choose to (if they show at all) and complaining about it results in a change to a new driver with same results. 

Day programs are not open 7 days a week and they take federal holidays plus training days.  Family members still work which requires an attendant provide personal care.  In addition, that same family member who is also the sole provider can work late like anyone else.  

EORs; leave us alone.  Many (not all) are the parent, legal guardian, bread winner, scheduler - the list goes on.  We have been taking great care of our family all this time.  Stay in your lane and let us do what we do best.

Paid family member care givers.  I thank God every time I am able to rely on them when I get into a jam.  If I get hurt, they are there.  I am stuck on the subway, no problem!  Try thanking them for providing the love and care our disabled families need and deserve.

Facilitators provide a service.  I was always on the fence about this role until recently when they provided much needed information.  I was very happy I had that conversation.  Personal touch is important to all around care.

Annual evaluations - if they are born with a disability, it doesn't go away.  It will become more obvious as they age, and the needs will INCREASE as time goes on.  Stop infringing on the basic human right to live!

We are not asking you to "do it for us" but rather help us provide our disabled family member to live a life worth living for just like we all want to.  Surviving is not enough; joy and happiness is a necessary requirement. It is just basic human rights.

I fully support the write up from the ARC of Northern Virginia.  They have always had our best interest at their core.