Mother With Downs Syndrom Child Needs Help

I have a friend who has a problem. So I told her I would ask the knowledgeable people of ATS if they have any advice.

She is a widow, and has a son, 23 years old, who has severe downs syndrome. He graduated high school this past spring.
She had worked as a teacher's assistant ever since he was in grammar school so she would be off work during holidays and the summer to care for him.

Now that he is no longer in school, she won't be able to return to her job as a teacher assistant because her son has no one to care for him at home.

She was wondering if there is some kind of grant, or federal program, available for mother's who are in a situation like this?
She would like to go back to school to learn a new trade, but would need financial help to pay for someone watching her son while she's in school.
She said she could go back to the teaching assistant job, but by the time she paid for "childcare", gas, etc. she would only net around $200/mo., so it wasn't really worth it to her to do this.

Does anyone know of any grants that would cover college tuition costs, and pay for care for a disabled family member too? (She lives in Tennessee.)

Her son should be able to receive assistance or should be receiving assistance, and she can look into a program where he might be able to stay while she is at work.

There is also an option for her to find work in a program/work setting that deals with people with disabilities, even though she hasnt worked, she still has experience with the disabled, and that might be a great asset. If its possible for her to find employment like that she might be able to take her son with her as well.

This was just off the top of my head, but I will look further into it as well.

Peace, NRE.

reply to post by sled735


There should be plenty of agencies who cater to his population. He could go to a dayhab during the day, or even live at a group home with his peers if she wanted to go that route. I'm fairly sure she wouldn't have to pay a dime since all monies for the dayhabs/group homes come from the government.

Thank you both for your responses.

There is a program that would provide money to pay for his care while she works, but she only found out a couple of weeks ago, thanks to some new law, that if she uses any of the money that comes from medicaid to pay for this, then upon her death the government can come and take her house/land/assets to get back any money they have paid out on his care over the years.
She has two other children, and this would be unfair to them for the gov. to take what should be passed to them in their inheritance.
This is why she is interested in looking into grants that would also pay for his care while she is in class.

reply to post by sled735


No, that doesnt sound right. She has to be careful and read everything very, very thoroughly. Anything that HE receives for his disability has nothing to do with her. If she finds something otherwise that cannot be verified on an actual "gov" website or social security office, then it is BS.

There is a 1-800 number that she can call and get information, as well, her son should have a case worker.

Peace, NRE.

reply to post by NoRegretsEver


No, it not only doesn't SOUND right, it ISN'T right. But... that's the gov. for you!

They (the people she called about this) said her son would have to be eligible for TennCare Ins. before he could get into a program that would pay for his care. They sent her the forms to fill out, and she read in that packet about them being able to take her assets upon her death.

The gov. is out to "get us" any way they can!

reply to post by sled735


The government programs have splintered off. She needs to talk to the Social Security Administration and speak with someone that deals with SSI. I am a bit confused she should have plenty of people and resources for this, if her son is 23 years old.

Peace, NRE.

reply to post by NoRegretsEver


Thanks. I'll tell her.

reply to post by sled735


Anytime, I dealt with the SSI BS for 17 years with 2 children, so I know the loops, tell her good luck, and never take the opinion of only ONE person, write all times and dates, and get extensions and supervisors names. This is the only way not to get screwed with.

Anytime I dealt with them about something this important I recorded everything and used my atomic clock for a accurate time and date, I know it sounds extreme but she has to cover her end.

Peace, NRE.

Originally posted by sled735
Thank you both for your responses.

There is a program that would provide money to pay for his care while she works, but she only found out a couple of weeks ago, thanks to some new law, that if she uses any of the money that comes from medicaid to pay for this, then upon her death the government can come and take her house/land/assets to get back any money they have paid out on his care over the years.
She has two other children, and this would be unfair to them for the gov. to take what should be passed to them in their inheritance.
This is why she is interested in looking into grants that would also pay for his care while she is in class.

edit on 8/23/2013 by sled735 because: clarity

I wanted to clear up a mistake I made in the above post.

It is not medicade that takes the money back at her death, it is the TennCare Ins. program. But, since they tell her he needs to be on TennCare to receive any help, this is what is creating the "between a rock and a hard place" choice for her.

Originally posted by sled735
It is not medicade that takes the money back at her death, it is the TennCare Ins. program. But, since they tell her he needs to be on TennCare to receive any help, this is what is creating the "between a rock and a hard place" choice for her.

That is correct. Other states have slightly different names; it's all tied to Medicaid. I encountered this when my father became too ill to care for himself. he had little money to speak of except $900 a month social security. His nursing home care cost $200 a day. The government program would pay for it, but the flip side is that they would attach his "assets" when he passed away, in this case a paid for house worth about $100K.

Yes, all these cases are sad, and this one particularly so, but the bottom line is that this person is requesting assets first, for free. Governmental welfare programs generally won't help you unless you have no assets in the first place. You have to "spend down" your savings, etc. before you even qualify. The fact that they are willing to forego this requirement under the circumstances seems a minor bureaucratic miracle to me, but it is a requirement codified into the law nationwide.

Now you can decry the fact that the government wants to be paid back, but we all know that the bottom line is that the government will never recoup the resources it spends on cases like this. It's a net loss. We all pay. There's your social responsibility for you. That's her safety net. She got it. The fact that her assets are seized after she is dead (and no longer needs them) is personal responsibility for you.

And there IS at least some personal responsibility and accountability still left, though its fading fast. Now I can hear the cries of outrage already, but the fact is that somewhere along the line this woman did not take care of herself and she wound up taking on more than she could manage. We don't know details; all we know is the end result. She's a widow, surely through no fault of her own. But where's the life insurance? You mean she started a family and forgot about life insurance? The couldn't "afford" it? Really? Life insurance is part of the protective shell you create to help your family should an accident happen. If you don't have it, you gamble that nothing will happen. well, it did, and guess who's there to bail her out? The government.

And even when they do, even when they step up to the plate, you bitch.

reply to post by schuyler


I can understand your rant, but I do not see how it applies to this particular situation.
All the woman is asking is if anyone knows of any grants that covers child care, for gods sake!

Grants are different than using federal government money. Grants don't need to be paid back.
Also, you are correct that you don't know this lady's situation.
Why are you coming down on her so hard?
Have you even seriously put yourself in her shoes, raising three children on her own? And on top of that, one of them needing constant care, even in adulthood?
No wonder she has not had time to prepare!
My hat goes off to this lady. I think some women would have cracked under that kind of pressure!