When my husband and I lost a good friend to cancer and started caring for their adult child, we knew it would require sacrifice.  We sold our small home with one bath and bought a home that had two baths.  I did not think I would lose family and friends due to living with someone with ID, but I did.  One of my children quit talking to me and certain  friends do not come around anymore.  That is how the cards are stacked against someone with ID from the day they are born.  I wouldn't have believed people could be so cruel until I saw it for myself.  We chose to have those cards stacked against us too and vowed to protect this person no matter what.  My going withou income or a career to care for this person was not easy, but we managed.

When we were told we could get help through cd care, we couldn't have been more relieved. We thought we would be able to find someone to help, but I ended up being the only attendant.  Turns out, diapering an adult turns many away.  This is another sad, but true reality.  It doesn't help that the pay is $9 per hour with no benefits.  Now, with EVV, finding someone is impossible.  The few persons I have interviewed said a flat "no" to an an app on their phones.  I have come to the realization that I will never have a career or a decent salary for the choice I made.

Now, we are considering whether the sacrifices we have already made are the last ones we will make due to EVV.  Why do we want to be insulted by being tracked in our own home?  We thought we were doing a good thing, and the state is saying we are bad people and need to be tracked and every hour accounted for.  Never mind the above sacrifices and $9 an hour with no benefits (community outings to the doc etc.. come out of the $9 an hour).  The fact that we are now being threatened with a Medicaid fraud accusation for doing good has just about broken what is left in us for caring.  For what and to what end?  To have this person in much costlier services in an institution?  This person will die in an institution.