marriage of SN child

[Anonymous]

My SN child is only 6, but I was talking to another SN mom whose 30 year old son lives at home and goes to a day program. He met a SN girl at a conference, and they were instantly inseparable. She lives in a group home several hours away and doesn't want to move. They are engaged. His mom is not willing to let him move up to the group home, and is concerned that it wouldn't be great if they had a child. Just wondering if anyone has thoughts on this. In my case, it is too soon to tell what level of independent living my son might attain. I just can't stop thinking about this situation.

[Anonymous]

Forgot to mention the girl does not have parents, mom was addict, she was in foster care before the group home.

[Anonymous]

There was a Post series I believe in the last year or two about a young woman who met a partner in a group home. They have since had a symbolic wedding ceremony and are living together in some independent living facility. They didn't legally marry because each would lose some benefits.

[Anonymous]

Anonymous wrote:There was a Post series I believe in the last year or two about a young woman who met a partner in a group home. They have since had a symbolic wedding ceremony and are living together in some independent living facility. They didn't legally marry because each would lose some benefits.

That's really sad, and possibly unconstitutional, PP.

[Anonymous]

It's not unconstitutional at all. It's how SSI works.

[Anonymous]

I think you deal with it at the time. I would want my child to be happy. I would not want them having children and would want him to have a vasectomy to make sure it didn't happen.

[Anonymous]

SSI rules are unfair.

Anyway, I can understand the mom not wanting them to have a child. If he lives in a group home, that means he can't take care of himself. There is no possible way he will be able to take care of a child. But I think honestly if they are adults mom cannot stop him from going over to her group home. In guardianship, rights are taken away in areas necessitated by the disability.

SSI isn't fair. There is a $2,000 asset limit which remained the same since the 80s, despite inflation. 1. Who lives on $2,000 today? 2. This prevents disabled people saving for things like a care, a house. There is a law called the ABLE act, where disabled people can create a tax free savings account to save for stuff like a house, car, education, etc. but you have to be disabled before age 26.

My friend is on SSI and can't afford a cell phone. When he was done with his internship (we met at a program that teaches us job skills), he had to go home and call me to come to his house. Very inconvenient. He applied for a free government cell phone but they denied him because he already has a house phone. We can afford the latest smartphone, break them and get them fixed. Why shouldn't disabled people be allowed to have nice things? Also, 1 cell phone per household. If a husband has a cell phone and takes it with him, what do you do in an emergency? What if the emergency is outside and you don't have a cell phone. Use a payphone? We're not in the 90s. Ask a stranger for a cell phone? A cell phone is a necessity these days. You also need a cell phone to get a job.

The ABLE act was passed in 2014. A woman with down syndrome started a petition on change.org

Petition text wrote:This is the year, we call on leaders in Congress to put an end to the inequities that exist for people with disabilities by passing the ABLE Act and allowing individuals and families to save for the future and break down the barriers to employment for these individuals.

https://www.change.org/p/congress-pass-the-able-act

The asset limit means disabled people cannot take out loans, preventing them from starting businesses, keeping them in poverty. That is what the system is designed to do, keep disabled people in poverty.

[Anonymous]

My adult brother has DS. All the money we have set aside for him is in a trust so he's still "poor" in the state's eyes and eligible for benefits. He lives in a group home.

The story PP referred to was a couple, I think both had DS, living in Bethesda. He works at the Giant on Arlington Road -- go there in the day and you may see him. Since they were both in the same county, they worked out a plan with their providers where they live together in an apartment, but a caregiver comes by at dinner time to help with meal preparation. It all depends on the functional level of the person of course. My brother can pour himself something to drink and that's about it. Would have no clue what to do in a fire so that's why he needs 24/7 supervision.

[Anonymous]

I have a special needs adult son. He now has a GF, also with special needs. They have determined they will not have children. I am very happy that he has someone in his life who loves him the way he is, and I hope they will always be happy.

[Anonymous]

Anonymous wrote:SSI rules are unfair.

Anyway, I can understand the mom not wanting them to have a child. If he lives in a group home, that means he can't take care of himself. There is no possible way he will be able to take care of a child. But I think honestly if they are adults mom cannot stop him from going over to her group home. In guardianship, rights are taken away in areas necessitated by the disability.

SSI isn't fair. There is a $2,000 asset limit which remained the same since the 80s, despite inflation. 1. Who lives on $2,000 today? 2. This prevents disabled people saving for things like a care, a house. There is a law called the ABLE act, where disabled people can create a tax free savings account to save for stuff like a house, car, education, etc. but you have to be disabled before age 26.

My friend is on SSI and can't afford a cell phone. When he was done with his internship (we met at a program that teaches us job skills), he had to go home and call me to come to his house. Very inconvenient. He applied for a free government cell phone but they denied him because he already has a house phone. We can afford the latest smartphone, break them and get them fixed. Why shouldn't disabled people be allowed to have nice things? Also, 1 cell phone per household. If a husband has a cell phone and takes it with him, what do you do in an emergency? What if the emergency is outside and you don't have a cell phone. Use a payphone? We're not in the 90s. Ask a stranger for a cell phone? A cell phone is a necessity these days. You also need a cell phone to get a job.

The ABLE act was passed in 2014. A woman with down syndrome started a petition on change.org

Petition text wrote:This is the year, we call on leaders in Congress to put an end to the inequities that exist for people with disabilities by passing the ABLE Act and allowing individuals and families to save for the future and break down the barriers to employment for these individuals.

https://www.change.org/p/congress-pass-the-able-act

The asset limit means disabled people cannot take out loans, preventing them from starting businesses, keeping them in poverty. That is what the system is designed to do, keep disabled people in poverty.

Nice things are relative and in a child's situation its up to the parents to manage things well. My MIL gets $77 a month from her social security check. The rest goes to pay medicaid/nursing home. Most people who manage the money, especially the nursing homes don't use it wisely. I keep my MIL nicely clothed, good shoes and more for that amount but I shop really carefully. Most don't realize she lives off that amount. Others whom the nursing home manage have pretty much nothing. No, they should not be living in poverty and the rules suck (she worked all her life - at least let her keep a few hundred a month). I have to manage dental and other medical bills from it as well. I get the 2k limit because if you can afford a house, you don't need the help. It is meant to help the most disabled and needy people.

[Anonymous]

I agree that SSI rules should be modernized--increase asset limit, income disregards, etc. and end the marriage penalty for two SSI recipients who get married. But the way the program works isn't unconsitutional.