My son is 29 years old and he was harmed into this world of profound nonverbal autism by an MMR vaccine. What has been most important to us has evolved over the decades and I can say your list is fantastic. I'll only add that since my son has been an adult, we have needed compensation by Merck to fund what he must have to live on this earth after his traumatic injury. Indiana Medicaid is constantly cutting resource dollars and has next to nothing to offer here in our rural farm town. I lost my nursing job because we can not keep any staff (who does this type of work for $12/hr-$17/hr)??? I'll tell you who. The parents. So what do the reps of Indiana do when only family will care for their loved one? Limit the amount of hours they will pay you. A stranger gets paid for hours worked UNLESS that staff is genetically related to the client. Then you must care for them for free after your shift ends. I am a single mother as I am the only one that has stayed around. I do not have a spouse or other to turn in hours for me. I have begged the state of Indiana BDS office to just pay me for my hours worked without holding my genetics against me since the state service providers could not find nor keep competent staff. They refuse. This has to be discrimination against my genetics. My son can not help he is profoundly brain injured and staffing shortages is huge and a number one issue across Indiana for all waiver participants, but, especially critical for the profoundly brain injured. We need representation to stop the discrimination based on our genetics when we are the only staff that sticks around and takes excellent care of waiver participants. I must add that the state expects family to provide the natural nonpaid supports which I do all the other hours of every single day. What I am at odds with the state is that if they pay other staff for 12 to 16 hours a day, then pay all staff for that time as well. That still leaves family (just me in my sons case) providing 8-12 hours of unpaid natural supports a day. Single parent families can not make it on such a low hourly salary for 40 hours a week but they must work every hour of the week limiting them to find other substantial employment. I am held hostage by "autism" and the state. If I walk away, my son gets institutionalized which is not his best life. Also, my son's budget allowed for nearly 24 hour a day care. The budget monies are there. The state just will not allow my son to utilize his budget because the only staff that stays is genetically unacceptable to be paid for hours worked by the state of Indiana. I want to share this because parents of younger children have not experienced this yet and us older more seasoned parents are doing our best to blaze a trail for all families. We appreciate you Ginger! May God bless your work and keep you in His Almighty care. Karmen Wagler RN, BSN
unacceptable to be paid for hours worked by the state of Indiana. I want to share this because parents of younger children have not experienced this yet and us older more seasoned parents are doing our best to blaze a trail for all families. So, I guess I had two very important issues for our family:
1. My son needs and deserves compensation for his profound permanent injury that was not disclosed to us making informed consent impossible.
2. State Medicaid programs are discriminating against staff based on genetics, even in the highest acuity waiver participants, even with critical staffing shortages.
We appreciate you Ginger! May God bless your work and keep you in His Almighty care. Karmen Wagler RN, BSN
The concept of "Natural Supports" is a big problem. Once your family member is an adult, "natural supports" should end and someone should be paid for the actual care hours for the individual. In our case, we have what I consider a good budget and yet of the 8760 hours that need to be covered in a 24/7 365 day year, I donate as the only "natural support" or cover out of pocket over 4000 hrs.
Thanks for taking this on, Ginger. Take care of yourself. Jody
My son is 29 years old and he was harmed into this world of profound nonverbal autism by an MMR vaccine. What has been most important to us has evolved over the decades and I can say your list is fantastic. I'll only add that since my son has been an adult, we have needed compensation by Merck to fund what he must have to live on this earth after his traumatic injury. Indiana Medicaid is constantly cutting resource dollars and has next to nothing to offer here in our rural farm town. I lost my nursing job because we can not keep any staff (who does this type of work for $12/hr-$17/hr)??? I'll tell you who. The parents. So what do the reps of Indiana do when only family will care for their loved one? Limit the amount of hours they will pay you. A stranger gets paid for hours worked UNLESS that staff is genetically related to the client. Then you must care for them for free after your shift ends. I am a single mother as I am the only one that has stayed around. I do not have a spouse or other to turn in hours for me. I have begged the state of Indiana BDS office to just pay me for my hours worked without holding my genetics against me since the state service providers could not find nor keep competent staff. They refuse. This has to be discrimination against my genetics. My son can not help he is profoundly brain injured and staffing shortages is huge and a number one issue across Indiana for all waiver participants, but, especially critical for the profoundly brain injured. We need representation to stop the discrimination based on our genetics when we are the only staff that sticks around and takes excellent care of waiver participants. I must add that the state expects family to provide the natural nonpaid supports which I do all the other hours of every single day. What I am at odds with the state is that if they pay other staff for 12 to 16 hours a day, then pay all staff for that time as well. That still leaves family (just me in my sons case) providing 8-12 hours of unpaid natural supports a day. Single parent families can not make it on such a low hourly salary for 40 hours a week but they must work every hour of the week limiting them to find other substantial employment. I am held hostage by "autism" and the state. If I walk away, my son gets institutionalized which is not his best life. Also, my son's budget allowed for nearly 24 hour a day care. The budget monies are there. The state just will not allow my son to utilize his budget because the only staff that stays is genetically unacceptable to be paid for hours worked by the state of Indiana. I want to share this because parents of younger children have not experienced this yet and us older more seasoned parents are doing our best to blaze a trail for all families. We appreciate you Ginger! May God bless your work and keep you in His Almighty care. Karmen Wagler RN, BSN
con't from above:
unacceptable to be paid for hours worked by the state of Indiana. I want to share this because parents of younger children have not experienced this yet and us older more seasoned parents are doing our best to blaze a trail for all families. So, I guess I had two very important issues for our family:
1. My son needs and deserves compensation for his profound permanent injury that was not disclosed to us making informed consent impossible.
2. State Medicaid programs are discriminating against staff based on genetics, even in the highest acuity waiver participants, even with critical staffing shortages.
We appreciate you Ginger! May God bless your work and keep you in His Almighty care. Karmen Wagler RN, BSN
Do not fear, compensation is high on my list to be addressed.
"Natural Support" is wage theft in any other context.
Perfect list!!
Lets get er done!!
Its all just basic common sense.
SHARE SHARE SHARE!!
WOW
And evaluation of treatments by people who apply the scientific method
And - natural support is wage theft in any other context.
The concept of "Natural Supports" is a big problem. Once your family member is an adult, "natural supports" should end and someone should be paid for the actual care hours for the individual. In our case, we have what I consider a good budget and yet of the 8760 hours that need to be covered in a 24/7 365 day year, I donate as the only "natural support" or cover out of pocket over 4000 hrs.
Thanks for taking this on, Ginger. Take care of yourself. Jody