I cannot believe that I am yet again fighting for my kids to get their basic care needs met. Every single day it is a fight, iep's, 504's, therapy and so much more is a fight. Fighting with insurance to pay for medications or food or supplies for daily living... its just not right.
When my daughter was first eligible for the waiver we attempted to use an agency for care and it was extremely hard to find someone willing to come to western Loudoun. Also, the person they eventually sent was a smoker and my daughter has respiratory health issues and that was not ok. That is when we decided to go to consumer directed care.
It has been extremely difficult to find care that would accept the pay that was given. We now have 2 children on the waiver and our youngest is autistic and has a feeding tube. We have had many attendants and one who stole from us and enough that we pressed charges.
We do not feel as though there is a person who is willing to give our children the care they need, ie... eyes on them at all times due to laryngospams that cause vocal cords to completely close which causes them to stop breathing. These can happen at anytime and without warning. With the current pay rate where it is.
The world as whole was changed when Covid 19 became a part of our lives. Many corporate businesses have gone to 100% virtual work because they see the benefits of parents being at home and having a shorter commute and all that comes with work from home life.
Being the primary caregivers since covid has been huge. We know our children and we know their specific needs and we are in a groove and though finding care would be great it is for sure easier said than done.
Keeping parents as the caregivers for children is not a new thing, many states utilize parents as care givers and it has greatly improved the care of the children and kept families together rather than split do to needing to be in a care facility.
Please, do what is best for the families who actually have children on these waivers. Listen to us! We deserve to be heard and we deserve to choose the care given to our children just like other families with able bodied children get to. We shouldn't be penalized because our children require more care than others. That would be discrimination. Forcing parents to have to go thru an agency to be able to provide care and be paid is not ok. I can tell you, I know more about my children's needs than even the specialists and providers they see. We have great doctors and yes, there are some things they are able to do more for our children but, we live with and care for our kids every single day and we are the best providers they will ever have. We know them. They deserve the best care possible.
Help ease our minds by allowing things to stay as they have been through the pandemic and let us provide the care and receive pay for that care. We have to jump through all the hoops every single month to prove they still need care, help us by keeping parent pay and allow us some slight peace of mind.