Are these parents right to keep their disabled daughter a

[TheDullWitch]

Story here

They don't want to handle her with winches and hoists though, they want to cuddle her and carry her, and she would probably prefer that. They also mention that she hates to sit up, so wheelchairs are inappropriate for her. They use a complex double pushchair arrangement atm, which keeps her lying down. They couldn't use that if she was adult-sized, so they couldn't take her out anymore, which would not only be sad for Ashley, but also very destructive to their family. I feel that keeping her more childlike may be part of their motivation (I'm sure it is 'nicer' to care for a baby-like person like a baby) but it is not the whole story by any means.

And in the US, you can lose EVERYTHING to get this equipment.

Honestly, people, I have seen and known folks who are truly desperate b/c of the way healthcare 'works' there.

I myself had to file for bankrupcy after being struck by an uninsured, drunk motorist w/numerous offenses (who subsequently went to prison, so couldn't exactly help w/my medical bills). I was temping for an employer who was not obligated to provide medical insurance - not that I would have been able to afford the premiums on the $8/hour gross I was earning, and this was after having been made redundant during dot.bomb when plenty of degreed professionals were working in Starbuck's b/c they had 'good insurance'.

And this was back in the days when you could have your medical debt discharged in bankrupcy.

These people would have to give up custody of their daughter - a long, and potentially impossible process depending on the state laws in effect - in order to qualify for Medicaid.

Giving up their jobs and home probably isn't an option, as if they did it's likely the state would deny them, anyhow, by saying their poverty was intentional.

I've had to deal with trying to get sefices for my son. They agree he's a ridk to his siblings, that I am exhausted, that we risk our home because of teh damage he can do (we lost ab hlouse once because of this). We got.......

a promise for care for three weeks of teh holidays in a holiday club

we received.... zilch because nobody from SS would take our call when the time came to arrange the placement

just an example of what its like dealing with them

sorry that was ss services oops

AttilaTheMeerkat I have the equipment paid for by social service and the housing association.

Aloha! Are you back?

There are children at ds1's school who will never sit up (they are wheeled around in kind of long wheelchairs. Their level of disability is so profound, so far removed from most people's understanding of disability, that I think decisions can only be made on a case by case basis. You can't compare this decision with any decision made about a non disabled child- it's just not comparable.

I understand their fear of not being able to care for their daughter. Knowing that there will come a day when we can't care for ds1 terrifies me and dh. I wouldn't seek out radical surgery for him (but he's not profoundly disabled) but I probably would give him a drug that reduced aggression for example if that meant we could keep him with us for longer.

I can completely understand why they did it, given her level of disability.

I'm sorry aloha, I find the "easier for the parents" attitude (of carrying/caring for a child-sized child, even if she's an adult) very weak.

It's not about it being erasier though, it comes down to being able to do it at all (at least that's how I read the reasons for their decision). They will be able to care for her for longer if she is small.

Another thing - were the doctors involved right to publicise this case? The family must already be under pressure, do they really need this media circus?

Agree Rhuby. Case by case. I think that to talk of this girls sexuality is a bit daft tbh. She's not capable of a sexual relationship (some adults with learning disabilites are of course- but this child's condition is way beyond learning disabled).

There are a lot of problems with things like the pill and injections for the learning disabled as at 18 they are meant to make their own decisions- even if not capable of them. There has been a thread on SN before about this very difficult situation. I would be quite happy to wave a magic wand and remove ds1's sexuality if could, if he remains as disabled as he is. He's not going to be socially capable of a relationship, or of even understanding what a sexual relationship is, although he'll be physically capable of one- I don't see how anything other than sadness and difficulties/abuse could come of that to be honest.

Jimjams.

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giddy how difficult it must be for you.

ah giddy, your post makes me want to weep for your situation.

Sorry - it was me, I think, who introduced the 'sexuality' angle by using the wrong word. I didn't mean 'sexuality', I meant 'physical sexual characteristics'.

Jimjams and Giddy - the realities you talk of are shockingly clear.

I guess confronting situations get confronting responses - as in the treatment that has been decided for Ashley.

I agree about the privacy and media attention.

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oh giddy, I'm so sorry

I'm sorry Giddy

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Bundle, I think in the case of Ashley, their 'convenience' is totally in her interests. Their needs and hers mesh completely in a way I think most of us are grateful we never have to experience. Making her easier to care for will make her life better, not just her parents' life better. And it isn't just that she will be easier to care for. She will be healthier and more comfortable. This is very drastic treatment, and I can see the ethical problems, but this case is specifically about a drastically damaged person with drastic, lifelong needs. It seems pretty clear that Ashley's life will be better with this surgery and treatment that without it.

giddy your post is really sad. made me rethink my thoughts on it all.
sending you big hugs.