Experiences with caring for disabled family-not own child

In My Humble Opinion
1

My husband has a little sister that is learning disabled. She is now 25. She never attended main stream schools and never got “into the system.” She has been severely coddled her entire life and honestly, I have no idea what her true limitations are.

She did use social services to help with job placement and worked as a bag girl at a grocery for over a year, until her parents thought it would be better for her to go on vacation than have a job.

She took driving lessons for YEARS and will only drive somewhere she has been taught to drive. (scary, eh?) Her parents would not consider teaching her to use public transportation.

She can cook for herself and do basic household stuff. She has never been exposed to paying bills or I would guess, any sort of money management.

I’ve always known that one day her care would fall to us. Her other sister is a flake to say the least. I don’t think she is nearly as crippled as she has been raised to be. Sure, she has limitations but I’ve seen folks with more, do much more.

That’s the background on her.

Her parents are divorced. Her mother lives halfway across the country and travels extensively for her job. Her father is a doctor that has severe heart problems and has recently lost his ability to perform surgeries and really, is likely to die at any time. He’s been having pretty severe heart attacks for years. He’s had a defibulator installed on his chest for a year or so, he recently had a huge one, had stints or whatever put in. His outlook is grim. To top it off, he is a RAGING alcoholic and whatever limitations he had before, are pretty much gone. The general feeling is that he and his new alcoholic wife are soon to do the whole “Leaving Las Vegas” thing.

So in their infinite wisdom, they are moving SIL across the country to where her mother lives and putting her in her own apartment for the first time in her life. The bills will be paid by her father. Right after she is scheduled to move in, her mother has to leave town for 2 weeks. So she will be sitting there in a strange city, unable to drive around, with no job and no one that knows her. I am absolutely flabbergasted.

I have suggested to everyone that since we are moving to the country, that we get either a large enough parcel or two adjoining parcels to allow the SIL to have a house very close to us. It would allow her the autonomy of living alone but with a parachute close enough that we could keep an eye on her and help her. I see it that she could work on being independent at her own pace rather than just being thrown out there.

As far as I can figure, the safeguards we need to have in place are:
A. She needs to have her own house.
B. She needs to have some sort of income to be able to pay her own way (SSDI, father, job, whatever)

I do not think that she should live WITH us. She has been raised to be more dependent than if they had bound her feet. However, the light is going on and she has been fighting that for the last year or two. I think she stands a good chance of being able to take care of herself and function in somewhat normal society, but she will need help/encouragement to do so.

Anyone else familiar with this? What safeguards would you recommend I put in place? What should I ask of her parents? What should I ask of her?

For the record: She does have a trust fund already, her father has wanted to buy her a townhouse, but they haven’t gotten around to it, so I know that the ability is there for her to buy/build a house outright as long as it is reasonably modest. We would have to buy a 2 acre parcel at least to have two living structures on it, which would raise our price up for certain. I guess I need to ask them what they would be willing to do.

Any advice would be appreciated, even if the advice is “Divorce your husband and run far, far away!”

2

This is a sick response, but my first thought was “what if someone takes advantage of her in a strange town and she gets pregnant?” Is she on birth control? I know it is a difficult question to have to ask, but the alternatives are worse.

3

It is a very, very valid response.

She hasn’t had much exposure to boys. What living in a gilded cage all these years. She had a boyfriend for two weeks and swore they were getting married, set a date and everything. Quite a few years ago, I heard that she had a boyfriend she met online and he came over and she had anal sex with him (he said she wouldn’t get pregnant that way, and would remain a virgin) but I’m not sure how true it is.

She has no concept of self-preservation. She signs up for IM programs with all her real info, including phone # and address. The only reason she hasn’t been a headline yet is because of sheer, blind, luck.

The other thing is, she’s built like a brick shit house, but you know pretty quickly that she’s not all there and she is very, very easily manipulated. A very dicey combo at best.

Her father is an OB/GYN. I doubt she’s on any kind of birth control, that would imply they think she’s older than 5.

4

I think what you are offering to do sounds great. My only caveat is that you say “in the country.” Sometimes people with need for social services can be very isolated from those services in a rural area. Also, living in a rural area when you can’t/shouldn’t drive is a problem. So it would depend on just how rural you are talking, I guess. If social workers and job coaches are still accessible, that would be helpful.

5

There was an article in the paper here recently about a man (I think he has Down’s syndrome–but his mental retardation may be caused by something else) whose parents arranged for a house to be bought for him. The money came in part or in whole from social services. He works as a bagger at a local grocery store, takes a taxi to work, etc. He has a housemate-- an ordinary man in his 50’s–who, in exchange for not paying rent, helps out with all those little things that are easy/routine for most of us but difficult for those who can’t read, etc. Well, and in addition to reading instructions on boxes of Rice-a-Roni, etc., he’s responsible for making himself available as companion when it thunders, etc.

I don’t know that the details are appropriate to your situation, even if I remembered them all, but the idea that the disabled person might be better off living mostly independently but with a non-family, not exactly paid, not quite care provider might be worth checking out.

6

I think my first inclination would be to call around and find out what services might be available from social services if she were to live on your property. I’d be extremely concerned about moving her into a new situation where there is no backup for your care. Assisted living of some sort might be a better option than that.

But I don’t have any direct experience with this. I have an uncle who was receiving help from social services plus his family for a while after his mother died, but he ended up rejecting it all and striking out completely on his own at the age of about 45. People are unpredictable.

7

What does your husband think? What does he want to do, and how close is he and how much does he care for this sister? Will he help, or is this all going to fall to you?

8
  • bump *

What’s the timeframe on this, Auntbeast? I’m interested in concerned about what you all decide.

9

My husband is supportive of her living that close, but not with us. He is very syrupy about his kid sister. He’s hoping that her parents know more than we do and aren’t making a stupid decision.

Our time frame. Good question. She’s moving out of state on the 29th. She will stay with her mother for 2 weeks. After that she will be in her own apartment. From what I can figure, how well she adapts is key. I expect her to panic the first week. Her mother has signed a 6 month lease.

I’ve had my realtor pull some properties that would suit our purposes. She’s a big believer in fate and says the reason we haven’t sold our house yet is because the universe knew if we bought something, it wouldn’t be right for my SIL. I told her she’s a crackpot. (Realtor is a very dear friend also)

IMHO, it could happen anywhere from now until our demise. Now that we’ve thrown our hat into the ring, it’s entirely possible they scrap the whole moving across country thing.

My brother was given custody of my kid sister. I talked to him briefly about it. He pointed out that taking in a child is one thing, they are expected to grow up and move out. That taking in an adult is different, it is likely that she’ll never leave. This is why it is so important to me that she have her own home. I do believe she can be more independent than she is. And that she likes feeling independent, even if she isn’t. She would have to be able to have the opportunity to have her own life, her own home, her own friends, her own dishes. She needs the opportunity to grow as much as she can, but be protected while she does so.

She has no real physical disabilities. She has mild cerebal palsy, which makes her speech slurred. She has some pins in her spine, so she won’t be doing backflips, but then again, I don’t plan to do any either, and I don’t have a fused spine to blame. She is learning disabled. I’m not aware of her being unable to actually do anything she wants to, if she’s given enough time to be able to learn how to do it. So it isn’t like I’d be taking on a parapalegic. The actual care she would need would be mostly custodial and emotional. Making sure her bills are paid, there is food in the fridge and she’s being safe. I would need to help her learn her route to her job, grocery and what-not. I wouldn’t need to clean her toilets.

I’m guessing I should start a thread on SSDI. I know that she is in the process of getting benefits, but has been denied. I’ve heard that pretty much everyone gets denied the first go round. Compounded by the fact she’s never been in public schools, always private, means she was never in the system. I know they have an attorney working on it, but from what I can tell, it’s with the same lackadaisical attitude they have towards her anyway. How parents can be so indulgent and yet so short-sighted is beyond me. Imagine parents that don’t expect a child to have to DO anything, but expect one day they can throw her in an apartment and she’ll be fine. It boggles.

10

My husband got disability on his first try. I tell him it’s because I’m a wiz at filling out paperwork. :smiley:

Anyway, has she ever had a job where she was paying into the SS system?

Take a gander at this questionnaire and see if you can fill it out to get an idea of what’s out there in the SS system: The United States Social Security Administration | SSA

I hate to say that your in-laws seem to have set her up for failure, and I hope they had good reasons for all of the decisions they’ve made. But it sounds like there are things they could have done but didn’t that will make your SIL’s life harder than it had to be.

11

Call me bitter (BITTER!) but I have to say they did a lousy job preparing any of their children. The track record for the other two is pretty dismal.

The really pissy part of all this is that they are/were quite well off. They all went to private schools, but I guess they figured that was enough. The older daughter was married and called and asked me how to clean a bathroom. The mother once called us to go over to her house to slice potatoes for her because she was cooking dinner for her husband. And that wasn’t the disabled one. So you can just imagine…

Jsgoddess, according to that link, I can’t imagine that she doesn’t qualify. I know she was in a program for job assistance/placement for people with disabilities. They had a hard time placing her because of her learning limitations. Most people just won’t hire someone who takes so long to learn tasks. (Did I mention her father suggested she go to nursing school?) In the clouds, I swear to god.