Regarding the proposed new Medicaid rule for parents/spouses as personal care aides, I would like to start off by saying that to ask a parent/spouse to prove that the care required for their loved one is "above and beyond" is insulting. If the individuals receiving these waivers did not require that level of care, they would not have a waiver to begin with. To also ask for written documentation is ludicrous. Has it ever occurred to the individuals making these changes that there are many families that live in rural areas, therefore limiting the choices they have as far as choosing a service provider. Not to mention that literally ever personal care agency is short staffed and has extremely high turnover. Our family has had absolutely zero luck in finding caregivers. We have paid for personal ads, put flyers up, etc. We live in a rural area where honestly it will be extremely difficult to find someone willing drive the distance to our home for $12.70 per hour when they can make more than that as a cashier and not have to drive 30 miles one way.
And for you to tell me I would need to be employed by a personal care agency is insane. You want parents to have to meet the same requirements as other home health aides to care for their own children? And what kind of liability does this open up? If I am not able to make training sessions/staff meetings/etc because I am caring for my child, am I going to be written up? Or if I fail a test provided by the agency, am I then fired from caring for my own child? If parents wanted to work for home health agencies, I'm pretty sure they would do it on their own accord.
I do not what reality you live in, but to find a simple decent caregiver in today's economic climate is not an easy task. When you add in rural areas with no options, children that are very high risk/maintenance, as well as a sincere distrust to leave our most vulnerable in care of complete strangers, how dare you make these requirements. Our son has Cerabal Palsy with TBI. He is 6 years old, non-verbal total care. We have to feed/bathe/diaper/lift him/dress him/etc. Our other son who is almost 8 has Autism/Speech Delay. He is partial care. When we adopted these children, we knew we would not be comfortable leaving them alone with people we did not know. They literally would not be able to tell us if something were to happen to them.
All we are asking is to allow the parents that would like to care for their children to allow them. Believe us when we say if we had the options, you think we do, many of us would absolutely utilize them. I had to find a friend to drive my husband to a Dr appointment out of state because we have NO ONE to help us. We aren't just saying this, we mean it.
How are you willing to help us help our children?
Pulaski County, VA