HELP 27 OLD WITH ASPERGERS

[elizabeth8459]

Hi everybody

 

Sorry I have not written in a while I have been really busy. Hope you can help with dilemma.

I currently for my 27 year old sister in law who suffers from aspergers syndrome. I started looking after her in March 2005 after her mother suddenly passed away. Her farther is unable to look after her due to working away from home. Her Brother (My Husband) also works long hours.

 

I have reached a problem due to me now being pregnant and due very soon and i feel I can no longer care for her and the new born baby. The family network is very poor so I don't know where to turn, Since getting pregnant L has found it very hard she is currently under a phycologist and under medication I am also currently getting her re-assessed as she was last assessed at 14. She lives we me during the week and with her farther at weekends. She attends a college course Mon,Wed and Thursday so primarily care is needed evening nightimes and some days. Social services are as much use as a Chocolate teapot as L does not meet their criteria as she has a learning difficulty not a disability even though she is on the higher rate care and lower rate mobility though he DLA.

 

All the parents fighting for DLA for there children now, What happens when they get older are they expected to live at home and who cares for them ??

 

L can live at her family home during the week but not alone she cannot cross a road,boil a kettle alone so who is expected to help her ???

 

Can we get in a private carer and if this is so who pays them >?? Yes ok her benefits will but will this cover someone for 5 days a week and up to 75 hours per week.

 

Look forward to hearing from anybody with ideas

 

Lizzie

[baddad]

Hi everybody

 

Sorry I have not written in a while I have been really busy. Hope you can help with dilemma.

I currently for my 27 year old sister in law who suffers from aspergers syndrome. I started looking after her in March 2005 after her mother suddenly passed away. Her farther is unable to look after her due to working away from home. Her Brother (My Husband) also works long hours.

 

I have reached a problem due to me now being pregnant and due very soon and i feel I can no longer care for her and the new born baby. The family network is very poor so I don't know where to turn, Since getting pregnant L has found it very hard she is currently under a phycologist and under medication I am also currently getting her re-assessed as she was last assessed at 14. She lives we me during the week and with her farther at weekends. She attends a college course Mon,Wed and Thursday so primarily care is needed evening nightimes and some days. Social services are as much use as a Chocolate teapot as L does not meet their criteria as she has a learning difficulty not a disability even though she is on the higher rate care and lower rate mobility though he DLA.

 

All the parents fighting for DLA for there children now, What happens when they get older are they expected to live at home and who cares for them ??

 

L can live at her family home during the week but not alone she cannot cross a road,boil a kettle alone so who is expected to help her ???

 

Can we get in a private carer and if this is so who pays them >?? Yes ok her benefits will but will this cover someone for 5 days a week and up to 75 hours per week.

 

Look forward to hearing from anybody with ideas

 

Lizzie

 

 

 

Hi lizzie - Not got much to offer on the support networks and stuff, apart from you asking SS for a carers assessment for yourself etc, but one thing that stands out from your post is that she DOES meet Social Services 'criteria', whether they like it or not... She recieves Disability living allowance - not 'difficulty living allowance', and if she's on the higher rate care component it is already acknowledged that the extent of her disability is severe... As far as support goes, you're right in thinking that her DLA payments and the carer's allowance you receive should be part of that package, but that's not to say that other help shouldn't be available if assessed as necessary. I think you probably need to take some independent advice (CAB or NAS would probably be good places to start) to get some idea of the kind of help you should be looking for, and then talk to SS once you've established your 'grounds' for support...

 

Hope that's helpful

 

 

 

L&P

 

BD

[Kathryn]

Can we get in a private carer and if this is so who pays them >?? Yes ok her benefits will but will this cover someone for 5 days a week and up to 75 hours per week.

 

Hi Elizabeth,

 

Sorry, I've no experience of this, although it's an issue we may well be dealing with one day.

 

Have you looked into Direct Payments? SS provide the money directly to you to buy the services you require, i.e. a carer. There's a pinned thread this at the top of this board.

 

K x

Edited March 5, 2007 by Kathryn

[elizabeth8459]

Thanks guys i think its so hard you fight the system all the way throught the years it never stops , i just feel that we are expected to provide care forever without help. I think its important that all parents fighting the system for DLA and statementing should be aware that even in their teens and in adulthood we as family are expected to provide accomodation, care its silly ?

Someone once told me that if a dependant person has a family member who will help provide care ss turn their backs which i think is true.

 

Lizzie x xx

[JsMum]

your situation is getting very common with the social services stating the

 

SORRY THEY DONT MEET OUR CRITERIA,

 

we are in the same situation, I advice you to write to your local MP and express the same situation you have explained here, as its very clear that your doing a lot to support your SIL.

 

Also write a letter of complaint to the socail services complaints as well and express how disattisfied you are with the level of support they are supplying and that they really need to look at what support can be provided.

 

Carers assessment

+Adult assessment

 

I have been intouch with the Disabilties Rights commission and there is new laws that explains to the social services the criterias for supporting people.

 

so do give them a ring or look at the website as well.

 

I think that the only way to get anyone to take you seriously is complain to the top.

 

the other services to offer further support and explaining your rights is.

 

 

carers support ( Your local council will have local support group details )

MENCAP

Disability rights support services, lots if you google disability uk.

 

your SIL does have a disability and she she should be recieving support and services, thats her rights under the DDA.

 

its going to take some writing letters and a bit of searching round the LAW but we get there in the end.

 

its appauling the way you have been let down, can you imagine how things would be without you to fight her corner and support her?

 

JsMum

[Fletts]

Hi Elizabeth,

 

We have an 18 year old son with Asperger's and have been told by social services that he won't meet their eligibility criteria for assistance. This seems to be a regular response from all the social services. However, they do accept he is entitled to a care assessment. It's ridiculous that he can have the assessment but not the help. Anyway, now that my son is 18 he can get his legal costs paid under the legal aid scheme as he is on a low income. Social services have now come and started the assessment, but in the meatime, anticipating them rejecting our request for help as he doesn't meet their eligibility criteria we (on behalf of our son) have gone to a solicitor. The solicitor was recommended to us by Bromley Autistic Trust. The solicitor has commisioned a care assessment from an independent social worker. The independent social worker is very experienced in this field and has met us and our son. His opinion is that our son is in the "critical" need area. Apparently, he needs to be deemed as being at this level of need to meet the social services eligibility criteria. However, he expects the council to fight it and has warned us the case will probably go to court.

 

It seems to me that your sister in law is definitely in critical need also, but this is a very difficult problem for you to try to resolve yourself. Social services (in my experience) are not easy to deal with. They take advantage of the fact that most people don't know their rights or the system and the procedures. Consider getting a solicitor to act and advise you (on behalf of your sister in law). They will be a buffer between you and social services and you won't feel you have to swat up on all the legal stuff, that's their job.

 

All best wishes.

[elizabeth8459]

Hi guys im disgusted im 30 weeks pregnant and in a difficult situation and i might have to bring the MP into our situation and even a solicitor this is ridiculous i cant believe theres no help out there and im shocked that people like yourselves have been through all this stress what a mess. I fought the system 2 yrs ago when my mother-in-law passed L 's full time carer i had to get her from low rate DLA to high for personal care as i knew her needs were that greater than a low DLA recepient and social services i delt with then. In the end with advice on this website i went to my local MP god dont they shift their butts then??!!!

But y should it come to this????? I was appauled of what a social services worker told me when i first got pregnant and i asked for help then you know respite take a break that sort of thing im still waiting because she doesnt meet the criteria she has the wrong disability, i thought i mis-understood the woman how on earth can you have the wrong disability???

Well she said if your sister-in -law was born with say downs syndrome she would meet our criteria?

HOW WHAT Y I ASKED???? Because down syndrome is a learning disability L shows by our records the assessment we did she has not got a learning disability however if you are born with Down syndrome you automatically have a learning disability??!!! Born with aspergers doesnt automatically qualify you for having a learning disability.

By then i was so upset with this woamn i gave up.

 

What more can i say??

Thankyou everyone for your help

 

Love Lizzie x x