Re: Frederick couple with Down syndrome celebrate 25 years together

[Guest guest]

Don't understand why they are not able to marry???

[Guest guest]

probably due to income...if they marry, they would probably lose State benefits...no health care, no living expenses..etc

 

Don't understand why they are not able to marry???

[Guest guest]

I read this article and it made me sad - why is it "illegal" for them to marry and why can't they at live in the same group home??

Kathy

[Guest guest]

it didn't say that it was illegal, " They both have Down syndrome, and because of their developmental disabilities are unable to marry.“They could get married, but I don’t think they could carry on a household. "

I am guessing it has something to do with government funding...which is probably also why they are not allowed to live in the same group home..that just seems so cruel, though. Even if they had to have separate rooms because the group home didn't allow cohabitation, they could at least be together more if they lived in the same place.

 

I read this article and it made me sad - why is it " illegal " for them to marry and why can't they at live in the same group home??

Kathy

[Guest guest]

this is the kind of thing that we need to change...our kids are getting older, too..Danny is 13 and starting to notice girls..(oy vey) if he wants to get married (say, when he is 35;-) I would hate to have these barriers still in place. Hopefully, he will have a job, but even then, people with disabilites are barred from making enough money to live on..that is why we need the ABLE Act

http://www.reitour.org/Public-Policy/ABLE-Act.aspxOn Tue, Sep 20, 2011 at 11:15 AM, KathyR wrote:

it didn't say that it was illegal, " They both have Down syndrome, and because of their developmental disabilities are unable to marry.

“They could get married, but I don’t think they could carry on a household. "

I am guessing it has something to do with government funding...which is probably also why they are not allowed to live in the same group home..that just seems so cruel, though. Even if they had to have separate rooms because the group home didn't allow cohabitation, they could at least be together more if they lived in the same place.

 

I read this article and it made me sad - why is it " illegal " for them to marry and why can't they at live in the same group home??

Kathy

[Guest guest]

Reading the article it didn't really sound like they couldn't live together because of finances, more that the people in charge didn't think they "could" run a household. That is very sad indeed.

I agree the ABLE act should be passed, but there are ways around the rules in place. It does however take supportive people around to make such arrangements work.

It may have just been in the writing of this article, but it sounded more like the ceremony was the idea of the people around them than the couple's idea.

ette

To: DownSyndromeInfoExchange From: kratkiewicz@...Date: Tue, 20 Sep 2011 11:18:01 -0400Subject: Re: [DownSyndromeInfoExchange] Re: Frederick couple with Down syndrome celebrate 25 years together

this is the kind of thing that we need to change...our kids are getting older, too..Danny is 13 and starting to notice girls..(oy vey) if he wants to get married (say, when he is 35;-) I would hate to have these barriers still in place. Hopefully, he will have a job, but even then, people with disabilites are barred from making enough money to live on..that is why we need the ABLE Acthttp://www.reitour.org/Public-Policy/ABLE-Act.aspx

it didn't say that it was illegal,"They both have Down syndrome, and because of their developmental disabilities are unable to marry.“They could get married, but I don’t think they could carry on a household. "I am guessing it has something to do with government funding...which is probably also why they are not allowed to live in the same group home..that just seems so cruel, though. Even if they had to have separate rooms because the group home didn't allow cohabitation, they could at least be together more if they lived in the same place.

I read this article and it made me sad - why is it "illegal" for them to marry and why can't they at live in the same group home??

Kathy

[Guest guest]

I don't see this as a sad situation but rather a very happy one. If you

recognize my name at all from various postings over the past 4-5 years you know

that I have a 5--year-old son, Gabe, with Down syndrome. You may not know that

I also have a 57-year-old aunt with Ds who is living in a group home and

attending an assisted day care program much like what you read about in this

article. I am a co-legal representative helping to oversee her situation.

It takes a GREAT deal of outside family commitment for a such a couple to marry

and run a home. While there are programs offering assistance the individuals

must be developmentally able to handle assisted apartment living. My aunt is

very capable and " high functioning " but she is dangerous around a stove and is

not able to ration food properly. If she wasn't under supervision she would eat

a week's worth of groceries in a day and burn the house down making coffee (she

actually has some serious burn scars from an attempt at getting her into

independent living some years ago). That alone necessitates that she be under 24

hour supervision in a group home or family home setting.

The Frederick couple may be very happy to spend their days together like they

are doing now. My aunt frequently talks of marriage (for her it is to whoever

is showing interest at the time) but it is more of a movie ideal of marriage to

her.

As far as living in the same group home that is something that I'm sure the

family has considered and possibly determined is not an option. I have looked

into moving my aunt into a different home (closer to family) and there are just

SO MANY levels of care and grades of financing available. Each individual

(based on their development, need, and family situation) has a different status

which allows social service agencies to determine where they can be placed. It

really is a tangled web. These two individuals may require different types of

care making them qualify for different living situations. It's easy to think

that it is more " fair " for everyone to qualify for the same care, but it's not

practical or affordable. The group home and day care programs are very

expensive and it's understandable that someone like my aunt, whose parents are

deceased and has no siblings able to assist would qualify for any available home

whereas her roommate (who has a mother and sister and can hold down a part time

job) qualifies at a much lower level and is required to fund more of her own

care.

Kathy, did you do the math and realize that the groom was only 13 (the bride was

22) when their relationship began? Perhaps his family wanted to wait until he

was closer to 35 before getting more committed, too!

Finally, their emotional development may be at a place where spending their days

together is what they can handle. Did you notice that at the end of the service

they didn't kiss, they hugged? Maybe cohabitation, even in separate rooms,

would just be too much for one or both of them.

--Wisconsin mom of eleven, including Gabe, age 5