Hello does anyone have comments and suggestions with who generally provides personal care assistance.  I hear that families have this but how do they get started.  How do you find one? Mom

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Yolanda,

 

First you have to get your son qualified for services unless you want to pay for it yourself. Most regular insurance will not pay for home care that does not result in complete recovery, so every State has "waivers" that allow Medicaid to pay for the home health care. To get on a waiver, your son has to qualify for Medicaid.  There are at least two ways to do that. The first is if your income is low enough, he may qualify for Social Security and so for Medicaid. Contact your local Social Services department and they can tell you what the income levels are that qualify. The second is that you can get him on a waiver. Usually there is a waiting list, so don't be surprised if there is. Just put him on the list.

 

In my State, Colorado, parents may be allowed to be CNA'a for their children through an agency if the children qualify for Medicaid. In addition to getting paid (although not as well as many jobs) to provide those services to your son, which helps if keeping a full time job is impossible under the circumstances, that income from providing those services to your own child through Medicaid does not count (is not deemed) for Social Security as income. This means that if you and your spouse are working and so are over the limit, getting your CNA license and providing care for your son might bring you below the income threshold for Medicaid. It is a chicken and egg situation, but the agencies know how to make it work to get you started.

 

I do not know how many other States have this program. It has been very important to me. Home health care can have a lot of problems: people don't show up or do a poor job or are just not the kind of person you want to help you child. Finding a competent agency is very important. I believe their "complaint records" are public, so that is a place to start. Plus if you have any disability organizations in your area, people in those organizations may have some more localized advice.

 

If you can convince your State Department of Social Services to start such a program, I can give them the contact #'s here in Colorado so they can talk to their peers here. Talking points are: better quality health care for your child so medical costs are less; you are already at the house so your car doesn't break down, etc. and the care is more consistent; you will catch any medical issues sooner because of your training. It is not like you are getting rich off your child because you won't, but you want the best person to provide care and most of the time that is going to be a parent or other relative. If you have other questions, Iet me know.

 

This whole site, http://www.nichcy.org is a great resource, but they specifically have lists, which they maintain, of disability and special service resources for children age  0 to 22 in your individual State. These resources are invaluable for figuring out what is available for what you need.

 

In general, the greater disability community, especially those people with degenerative conditions or those with serious medical issues, is very supportive and helpful. They quickly understand your issues, have a great sense of humor and understand the trickiness of balancing a "normal life" with the demands of a disabling condition. I encourage you to hook up with such people because they can be a great help to you and to your son as he gets older and needs role models to learn how to work around whatever limitations he faces.

 

Ginny

 

 

Thank you.  Any ideas how to get in touch with that community?

Ginny Ward said:

Yolanda,

 

First you have to get your son qualified for services unless you want to pay for it yourself. Most regular insurance will not pay for home care that does not result in complete recovery, so every State has "waivers" that allow Medicaid to pay for the home health care. To get on a waiver, your son has to qualify for Medicaid.  There are at least two ways to do that. The first is if your income is low enough, he may qualify for Social Security and so for Medicaid. Contact your local Social Services department and they can tell you what the income levels are that qualify. The second is that you can get him on a waiver. Usually there is a waiting list, so don't be surprised if there is. Just put him on the list.

 

In my State, Colorado, parents may be allowed to be CNA'a for their children through an agency if the children qualify for Medicaid. In addition to getting paid (although not as well as many jobs) to provide those services to your son, which helps if keeping a full time job is impossible under the circumstances, that income from providing those services to your own child through Medicaid does not count (is not deemed) for Social Security as income. This means that if you and your spouse are working and so are over the limit, getting your CNA license and providing care for your son might bring you below the income threshold for Medicaid. It is a chicken and egg situation, but the agencies know how to make it work to get you started.

 

I do not know how many other States have this program. It has been very important to me. Home health care can have a lot of problems: people don't show up or do a poor job or are just not the kind of person you want to help you child. Finding a competent agency is very important. I believe their "complaint records" are public, so that is a place to start. Plus if you have any disability organizations in your area, people in those organizations may have some more localized advice.

 

If you can convince your State Department of Social Services to start such a program, I can give them the contact #'s here in Colorado so they can talk to their peers here. Talking points are: better quality health care for your child so medical costs are less; you are already at the house so your car doesn't break down, etc. and the care is more consistent; you will catch any medical issues sooner because of your training. It is not like you are getting rich off your child because you won't, but you want the best person to provide care and most of the time that is going to be a parent or other relative. If you have other questions, Iet me know.

 

This whole site, http://www.nichcy.org is a great resource, but they specifically have lists, which they maintain, of disability and special service resources for children age  0 to 22 in your individual State. These resources are invaluable for figuring out what is available for what you need.

 

In general, the greater disability community, especially those people with degenerative conditions or those with serious medical issues, is very supportive and helpful. They quickly understand your issues, have a great sense of humor and understand the trickiness of balancing a "normal life" with the demands of a disabling condition. I encourage you to hook up with such people because they can be a great help to you and to your son as he gets older and needs role models to learn how to work around whatever limitations he faces.

 

Ginny

 

 

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