I oppose the changes to the regulations for Virginia Medicaid waivers for the following reasons.

Parents know how best to care for their children.  We know what their normal behavior is and we know when something isn’t right. This simple fact can save a life and it did.   On Jan. 18 I went upstairs to give my son his medicine and he was sweating profusely and was lethargic.  It was 9:30, but he takes medication in order to help him sleep and I had not given it to him yet.  I also noticed that he looked as if he had discolorations on his face, a few small red dots.  He wasn’t acting like himself.  I thought he may have had a seizure, so I called 911.  After the paramedics arrived and checked his vitals and he appeared to be okay, they asked me if I wanted them to take him to the hospital.  I said YES!  I tried to explain to them that he is normally full of energy and something wasn’t right.  As soon as we arrived at the hospital, the dots had spread across his face and several minutes later his chest was covered.  Within minutes of that his lip was swollen.  They immediately administered epinephrine and gave him an IV with steroids. He had an anaphylactic episode.  I was shocked!  I thought to myself if I had just assumed he was tired like the 10 paramedics had earlier, my son would’ve fallen asleep and his throat would’ve closed from the swelling and he would’ve died.   But I know how he normally behaves.  So I pushed for them to take him.  And I know someone who doesn’t know him would’ve put him to bed because he looked tired and it was 9:30 at night. This frightens me!  Parent’s know there children. I tell this story not because I’m different or this is a one in a million incident.  I tell it because this is the reality of being the parent of a disabled child. All of us parents.  And we do it 24 hours a day, 7 days a week.  Not 40 hours a week.  There should be no limit to the  amount of hours a parent can get paid to be a caregiver.  If the individual is approved for over 40 hours, the parent should be allowed to be paid for that time. We are doing the work already. There should not be a limit.  We don’t stop providing care for them. I don’t clock out from making food for my 21 year old son who has a choking hazard because he never learned to chew.  I don’t clock out when he wakes and wets the bed at 2am and again at 4am.  I don’t even clock out when you say we are supposed to be clicked when they are hospitalized, because every single time my son has been hospitalized I’m the one that had to keep him from getting out of the bed, keep him from pulling out his IV,  administer his medications and yes, even make his food and feed him.  If anything changes, that needs to change.  We still work when they are hospitalized!  We are there for every milestone, doctors appointments, celebrations, disappointments and achievement.  My son has had  an ophthalmologist, neurologist, nephrologist, urologist, cardiologist and psychiatrist.  It’s insulting to us that you would have us work for an agency to care for our own children.  Don’t you think we already have enough on our plates with the actual bathing, grooming, feeding, dressing, administering medicines, doctor’s appointments, addressing health issues providing exercise and social events for our special needs children  which provides care that you really can’t get and keep for the wages that are paid to attendants that don’t even know our kids/adults. We should have the choice to choose who cares for our children. 

My son has Down syndrome and Autism and is nonverbal.  It is not easy for anyone including some of his family members to discern what his wants and needs are most of the time.  He needs routine.  When his routine changes, it is difficult for him to adjust and he injures himself.  Which will cause him to needlessly suffer because of bureaucracy.  

Please do not change the consumer direct option.  Please allow parents to be attendants for their children without having to work for an agency and please allow parents to get paid more than 40 hours a week.  And please keep respite hours.  We, the parents, need these hours whether we are paid or not.

Please don’t hurt these families.

Robin Mbonisi