“Mental health is a scary issue for many people. There is so much stigma attached to many of the diagnoses. Adults frequently are afraid that they will lose their jobs if anyone finds out. This leads to not getting help, and not being able to talk to anyone about their mental health isolating them from the world. Which in turn, can lead to more mental health issues like depression and anxiety. ”
Read more. . .
“They are told that in order to get the help their son needs they will have to give up custody to force their state into giving him care.
This is what they end up having to do. They have to legally “abandon” their child and Social services take over.”
Read more. . .
“Yes, it’s almost like we are asking you to be God. But you don’t have all the answers, and can’t preform all the miracles.”
Read more. . .
“I know we are not your ideal of a customer. You would rather not have us enrolled on your rolls.
Yours is a business that is for-profit. You want to make money. But despite our paying you hundreds of dollars every year, and then paying thousands of dollars out of pocket every year, our family puts you in the red every year.”
Read more. . .
A while ago I posted a rather long post about the state of long-term care for children in the U.S. If you made it all the way through, I commend you. It was long. . .
I want to clarify something about what I wrote in that post. That clarification is that I and other families are not just seeking a handout. Read more…
“Where does that leave parents? Where does that leave vulnerable children? This needs to be part of the discussions being had about Medicaid. This needs to be part of the discussions that we as American’s have about helping our neighbors when they can’t do it alone. It shouldn’t be this hard to help a child. Especially when all the research shows that early intervention is the most successful.”
We want help. We NEED help with our special needs children.
Medicaid provides ways for us to be able to receive help with our children. It does this through getting them out in the community so they aren’t just stuck at home, giving us a break through respite care, and nursing services for those whose health is such that it requires nursing. This provides us with a much-needed break so our children can stay at home with us and not be put in an institution. This is called a Medicaid Waiver. As a side note, this is far more cost effective for the general public to subsidize as we provide the bulk of the care for the disabled through Medicaid, then to pay for institutionalization.
In some ways, it’s like finding and having a Nanny come in and care for your child. For me, it is especially difficult as I have been on both sides. I worked as a Nanny for 9 years. I know what it is like from their side. I’m always second guessing what I’m asking them to do.
It’s a whole other ballgame when you are on the other side of things as the employer. These caregivers have goals they are supposed to be working on with your child. They are focused just on this child. Which creates a unique problem if you have more than one child. To truly get “respite”, you need a break from ALL children. So you have to find someone else to watch your other children at the same time which makes it weird having two people who probably don’t know each other watching your children in the same house. So you frequently don’t get any “respite” because you don’t use it for that. Instead, you spend time with your other children. And then you feel guilty because you haven’t spent one on one time with your child with Special Needs. Or you have two disabled children who each have to have their own person, so you need two people who work well together. This is just the beginning of the issues.
And then there is the issue of them being in your space all the time. Your bathrooms or house isn’t clean because you’ve been sick or just too busy? Disagreements with your spouse? A bad day where you just can’t seem to be nice to anyone? They see it all. It’s embarrassing, it’s frustrating.
Ideally, you are looking for someone who fits in well with your family. Someone that isn’t too passive with your child and can hold firm but be kind. Someone who is willing and open to learning new things since they didn’t receive training, you are going to have to train them. Someone who is reliable. You wouldn’t believe how hard this is to find. This last go round of us trying to find someone to work with D, they would show up for the interview, say they want the job and never show up again. D got to the point where he didn’t want to meet anyone else or have anyone in our home. You want someone your child feels safe and secure with. Really, you want Mary Poppins.
I don’t have any answers to solve all the problems. I do know that Medicaid provides a very important safety net for families like mine. Otherwise, we face burnout which isn’t good for us, our child, our family or community. It isn’t perfect and there are many tweaks that could be made to make it better. But as families we are very grateful and will keep trying to find a way to make the system work.
I don’t have the answers, but I know there’s a problem.
“. . . to treat your patients as though they are doing something wrong by asking for help when obviously I haven’t been abusing the system is just wrong.”
The alarm goes off. I just want to stay in bed. Why can’t it be Saturday yet?? Time to wake the kids up. I wake my daughter, she smiles and jumps out of bed.
My son is a different matter altogether. We will spend the next 2 hours coaxing, bribing, and sometimes physically pulling him out of bed and into the shower, as he has no intention of waking up for several hours, though he’s been in bed for 12 hours, so it’s not lack of sleep.
