My son still only has 6.5 hours PCA daily. The hourly wage has not been raised and even $25 an hour would be difficult to obtain a caretaker for a child as complicated as my son Matthew. 
Waivers now do include overnight care Which is really good to see that that was Voted in and accomplished for the severely disabled. 
I am also very happy to see the African-American preservation act, protect many low income and families of color.

The act really does need to include all counties in Minnesota not just Hennepin in Ramsey county. 

My son is most recently been charged with a criminal crime of fifth-degree sexual assault gross misdemeanor, which is very corrupt and has CPS written all over it.

 There’s No way Scott County should be able to get away with criminalizing my severely autistic son who is like a toddler. The savage police should  have never let this go through. 

We need to raise awareness about Medical Kidnappings in Minnesota and the hospitals and CPS that create them. 
It’s not “Abandonment “ when we trust our medical system to help us when our Severely Autistic children need medical services and treatment urgently be it Mental Health, Neurological  or otherwise. 

For some perhaps this is how their child may get help with Residential homes but many of us would like to continue to care for our children like we have been doing with resources in our home. We should not be considered neglectful because we seek other medical alternatives like second opinions. And we should not have our children taken away when we seek medical help. No matter how many times we seek it. 

This has become a huge political issue with our children needing services. 
We go to the people we trust the most for medical services which is the medical facilities and in turn they report us to Child Protection Services. From there, our children are held in one room ERs/ or hospital rooms which do not help our children but they just sit there on multiple medications unapproved by the parents causing heart and neurological problems gaining unhealthy amounts of weight.
They will continue to push more and more medications causing decline. 
Multiple Antipsychotics and Neuroleptics are dangerous and can cause Neuroleptic Malignant Syndrome. 
 The ER providers do not call on Rounding specialists that are needed because they won’t address the Neurological problems. This child has been witnessed with shaking at night and uncontrollable movements.

CPS manipulates your visiting rights and traumatizes your children and the parents that take care of them. Then the hospitals claim that they do it because that’s how we get resources which is Completely opposite. Our complex medical children get thrown in a group home And our parental rights are taken away. 

I have never seen such blatant HIPAA violations.
From the ER admissions to standard nurse care fraud is out of control.   

Matthew is severely Autistic with Immune Dysfunction. He goes to parks, swimming lessons and Waterpark but not all the time. He suffers with head pain, sensory and neurological issues and that will not be addressed in a GROUP HOME!

He plays by himself with joy and doesn’t have issues with other children . 
He used to attend weekly swim lessons, and thrives off of daily activities. A Residential Treatment would not meet his needs. He is young and full of energy. He has ADHD and these children need lots of space and definitely lots of activity. He has picked up a tremendous amount of weight because of the over medication ( Antipsychotics) and  inactivity and we need to get him back healthy.

Neglect is when a child is caused to gain a lot of weight, decline in health while they are kept in a room in hospitals for 7-8 months being Restrained for hours on end up to almost 4 hours. They get treated as if they have sexual problem when the problem is those who don’t understand disability and Autism. Children like this don’t react like an atypical adolescent. They do what their mind tells them to do. If a normal adolescent teen boy were to be held in an ER for months, their body would react the same way but could maintain restraint of their emotions and  body. How do you expect a severely disabled teen to be different? THEY invaded HIS space . Not the other way around.
He was humiliated but cannot speak. 

 

I want our children to have local county waivered  services in the parents home at higher rates of pay because there are no residential facilities available for aggressive adolescents flagged with in the system . With waivered service they need to include 24 hour nursing staff or PCA staff available. The waivered services will need funding to include that staff. 
Waiver Reimagine is not going to work. We as parents and advocates working with waivers have done the homework. 

There is nowhere for our children to go as there are no residential facilities and Crisis homes are dropping our children at the ERs at alarming rates because they cannot deal with the complexity. 
We take our children to the hospital so that they can be managed MEDICALLY seeking Psychiatric Beds. Crisis drops them because they are not trained on the complexity and it is a quick fix to just leave them and make us accountable to their ineffective care. But I tell you where is their accountability?

This is MEDICAL despite what the media and providers state.

Thank you for supporting our disabled.

It  is not just our adolescent children that need advocation but also adults and seniors  that need higher wages for their PCA so that they can get help in their home. This problem isn’t going to go away and residential treatment centers are closing in Minnesota.
Waiver Reimagine is proven NOT to be sustainable.

My child deserves to come home with services in place as he has asked numerous times and crisis and residential homes have proven to not understand his needs. He has sustained multiple injuries, maltreated with no socks in winter etc.. and was dropped at the ER by the crisis home. 

What will you do to change this?

Thank you