I am the mother of a severely autistic 14 year old girl. Her self-injurious and aggressive behaviors are so severe that she is currently receiving treatment at a residential facility. We are hoping to be able to get her to a point where she can return home in the next few months. During these six months that she has been in treatment and living away from home, this has been the first time I have been able to work outside the home since her birth.  When she returns home, I will not be able to work outside the home. Even with my daughter attending private day school, we get calls to come pick her up because she isn’t safe to ride transportation, there are days she gets sick and needs to stay home, and naturally because of her disability she has many more appointments that require me to attend with her. Getting hired as a new full time employee and asking for multiple days off a month seems absurd. Even when we have a reliable attendant, my husband or I are needed to be at home as backup for safety reasons when she becomes aggressive or self-injurious (which has been every day). I am a masters educated mother who is not able to earn a living because of my child’s needs. My child needs 24-7-365 supervision. She needs 100% supervision from waking around 5am until bed around 9:30 pm. She then wakes multiple times through the night and engages in self injurious behavior in which we are required to go in and block her for safety. 

I am not even going to argue with the 40 hour cap for parent caregivers, although by my count there are 168 hours in a week and my daughter is awake for 115.5 (not counting the 3-4 times a night she wakes and needs supervision). But it is impossible to think that I will always have an attendant around to care for her. I do have an attendant and sometimes I have multiple, but there are still hours where my daughter needs supervision and I should be able to be her caregiver during these hours. 

I also take offense to the idea that I would have to document my tasks while working (or after). My daughter was approved for a Medicaid waiver for a reason and that need for the waiver is reevaluated yearly. There is absolutely no need for me to be spending my very precious free time documenting that I gave my daughter a shower, or fed her dinner, or took her to the toilet, etc. As I wrote earlier I am a masters educated mom and I could be earning multiples of what I can make as a paid attendant and yet I can’t work outside the home (or any more than a very flexible part time work from home position) given my daughter’s needs.  At the very least, I should be able to contribute financially to my family’s well being by being a paid attendant for my daughter. 

Finally, why would anyone choose to be an unpaid EOR and volunteer their time if they weren’t a direct relative of the child?  Approving hours and registering and hiring new attendants is already a very timely undertaking. Why would anyone do this job who is not being paid for it?  At least if my husband is the EOR and I’m the attendant then we can benefit financially.  This whole idea that a non-family member would do this makes no sense at all. And what about single parents?  The restrictions put on families who are trying to care for their disabled loved ones in the home setting are astronomical. 

Our life has been infinitely easier since our daughter went into residential. I still drive 70 miles (each way - 140 total) mid-week to visit with her and take her into the community. My husband or I drive the 280 mile round trip (there, back, there, back) each weekend to bring her home for 1-2 nights. We want to bring our daughter home. We want to be with her. We are trying to build the toolset necessary to do this and at a minimum we want the support of Virginia to help support us as caregivers. We don’t want our daughter to live permanently in residential especially because we weren’t given the support needed by the State of Virginia

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Thank you,

Gayla Timm