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SN teens and young adults

Here are some suggested organisations that offer expert advice on SN.

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Original poster

Are we the only one's?

15 replies

mysisemily · 20/01/2011 12:04

I have a sister who is physically and mentally disabled who is nearly 28 in March. It seems that after a certain age (16) young adults with disabilities don't require support anymore? My Mum cares for my sister 24 hrs a day & is 52 years old herself and is finding my sisters demands harder and harder to cope with. I believe that my sister & my Mum need more support than ever. Can someone out there please tell me why this support doesn't exist for young adults with special needs? there must be other parents out there battling with the same heart renching demands?

OP posts:

ohmeohmy · 20/01/2011 13:00

I don't know the answer other than there should be support for carer's like your mum. Is she in touch with carersuk ? You sound like a lovely sister. Hope your family gets what they need.

Original poster

mysisemily · 20/01/2011 14:38

Thanks very much for your response, No my Mum isn't but I will pass this on :). After hearing about Riven Vincents comments made on BBC breakfast TV about 'not being able to cope with her Disabled daughter' due to lack of support & funds, I thinks its time more people spoke about the heart ach and pain they go through on a daily basis trying to make the right decisions for them. I never knew about this website until I heard this story this morning so fingers crossed I can find answers.

Thanks again.

OP posts:

ohmeohmy · 20/01/2011 15:01

There are lots of people with a vast range of personal and professional experience on here that can help you or your mum. Having a person with disabilities in the family is relentless and tough, I have a son with special needs and a younger daughter and trying to balance their needs is tough every single day. Come on here anytime.

ReclaimingMyInnerPeachy · 20/01/2011 15:55

I am sorry about your mum's position; my own sn chidlren are younger but I am aware that adult services are ahrd to navigate. the gap between child and adult services can be a big one and vary in either direction- postcode lottery thing.

Carers UK are amazing; can I aslo ask what assessments your mum has had from Social Serivces? See if we can think of anything

ReclaimingMyInnerPeachy · 20/01/2011 15:55

Oh one more Q:

does she get direct payments?

Original poster

mysisemily · 20/01/2011 15:57

that must be hard? How old is your son? I have witnessed the strength it takes for my Mum to just get out of bed in the mornings. I will def come on here more & I'm going to advise my Mum to do the same.

OP posts:

ReclaimingMyInnerPeachy · 20/01/2011 16:05

Please do; I know mainly about ASD but so much is generic and there are so many others on here that know their stuff that we can almost certainly help

I have 4 ds's, th ones with Sn are 11 and 7, toddler 2.9 and ds2 (9) has some SEN.

I do think I am blessed though- 4 sons is amazing.

Original poster

mysisemily · 20/01/2011 16:23

Hello ReclaimingMyInnerPeachy

My Mum has had assessments & payments are paid Direct to my Mum but they have been known to delay payment which on occasions has caused embarrassment :(

I don't know all the details surrounding my sister?s latest assessment because we have had a lot of problems with my sisters Day Care & had to withdraw her due to neglect. My Mum has major trust issues, which doesn't help her respite situation either. So as it stands My Mum has my sister at home Mon - Sun 24hrs a day. Two carers come over 2 - 3 times a week and sit with my sister for 2 -3 hrs. Like most children/adults with special needs she needs a lot of attention and care & my Mum often feels guilty about not doing enough.

My sister has a specially made chair which supports her (memory foam) & will pro-long her life.

OP posts:

ReclaimingMyInnerPeachy · 20/01/2011 16:37

sadly the guilt is normal with carers I think

Does oyur Mum get any support for ehr- eg a carers group I wonder?

Given the issues with DPs and the trust breakdown I would be considering asking for a new carer's asessment and a case review so things can be addressed. And I would be asking the acrers to take your sister out and do something with her so your Mum gets some space- is that possible?

Original poster

mysisemily · 20/01/2011 17:01

No My Mum doesn't :( My Mum lacks a lot of confidence and rarely leaves the house, she depends on myself another family friend & her next door neighbours for conversation.

I have mentioned this but due to them being fairly new carers she hasn't built up enough trust to let them take my sister out yet ...

Thank you for your advise this has been very helpful :)

OP posts:

cmcmm · 20/01/2011 19:55

I have empathy with your mum and your families situation. I too have a daughter who has extremely complex needs and i have cared for her for 22 years. Trusting others with one of the most precious people in your life is the biggest decision we can ever make. I don't think anyone can blame your mum for not trusting if your sister has already had a bad experience. I too have issues with my daughters day service, just that it isn't suitable to meet her needs. You are right more of us should speak out about our experiences and after today i think i will. Our local Authority has offered my daughter Direct Payments to support her care but only if we take a 20% cut on the current supports that are in place, placing more pressure on our family. They told us this is due to government cuts. I am able to challenge them although it is exhausting but many carers will not be able to do this. I hope your families situation improves and there is a happier outcome for your mum and sister.x

ohmeohmy · 20/01/2011 20:44

hey Mysis my son is 9 and has cysts in his brain which cause all kinds of problems. he is very lovely and lively though! It sounds like your whole fammily could do with some support. If your mum comes on here she can chat to anonymous people and take or leave what she learns without anyone pressing anything on her. In the long run it is impossible to shoulder this kind of responsibility without some support and she will need mroe than you as you grow up and live your own life. this is a good and safe place to start.

mumandemily · 20/01/2011 22:59

My daughter talked me into getting on mumsnet
Just looking at what she had wrote and the feedback I don't feel so alone

mumandemily · 20/01/2011 23:04

After being let down with my daughters daycare, leaving her alone for 15 minutes
How can I ever trust anyone again?

cmcmm · 21/01/2011 01:10

I really do have empathy with you we had the same issue with our daughters day service they thought we were over reacting when we discovered they had been leaving her with other service users who also had needs, without staff to support any of them. I am glad you got DP to get your daughter out of the service i am still fighting and hopefully soon we will have DP to get her out of the service. I have an agency who supports my daughter using ILF and it takes time to trust people and i'm afraid we still don't completely trust them but we told them why and the staff understand. I check up on everything, they have to fill in a daily diary to inform me what they did and if they believe my daughter enjoyed herself. I know it is difficult to have staff in and out of your home but i think this is a better way to get to know them and wither they are suitable to support your daughter. I train up all the staff and although my daughter requires two support staff initially it will be me and one member of staff until i am confident they are able to support her properly. I am glad your daughter guided you to the site i hope you get support from knowing you are not alone i know i do. x

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