Future help for autistic adult if/when sole parent no longer able to care for them

Good luck Mary and don't back down. It is really important to have a contingency plan in place that is realistically going to be available, so the LA really do need to contribute to it so you know what is possible and what may not be funded. 

You may have a wait for it unfortunately because LA'S allocate to social workers based on urgency and unfortunately there is so much demand just for crisis support that forward planning often gets stuck on the back burner until the case becomes a crisis situation itself. 

Hello everyone,

I've finally got back here and it looks like the helpline has been closed unfortunately. I have contacted the Cambridge NAS branch and hope they will have some ideas.

Form what Michelle says, it looks like the key is asking social services to look at contingency plans. My niece already has had an assessment which basically says what she needs but everything is currently being provided by my sister. There's nothing in it about alternative provision, so I guess tht is what I'm going to have to look for.

Thanks for everyone's contribution.

Mary

Thanks for that Hook,,, My niece has had an assessment by adult social care. The agreement was at that time that she could live by herself but I think my sister has realized that's not going to be possible. I will contact the people suggested in a previous message. Sorry to be slow in responding. I have a lot going on right now! Thanks again, Mary

Happy to try to help. I know it is a big worry that people have. 

Hi, I just also wanted to thank Hookaduckduck for her reply.  I really needed that info too!

I started searching the Internet for forums tonight for the first time as me and my wife are very lost now with supporting our nearly 15 year old daughter. Your message caught my eye because we too are very concerned about her future independent of us. She is desperate to move out at the first chance but as it stands her sensory issues would probably prevent her coping in a kitchen or shared accommodation. We are younger parents, both early forties so not facing the same problem as yourself. We have followed our instincts mostly with no support but recently in the last two years our relationship with our daughter is becoming more and more strained as our seemingly good intentions to help her in life seem mostly to make things worse. Really I'm just looking for thoughts and ideas for general support from other parents. Sorry I have nothing useful to comment about your original post but its drawn me to reach out for help too.

No, you only need to appear to be in need of services (usually determined by health conditions diagnosed). Some LAs do some initial screening at their contact centre which is based on the Care Act criteria (basically your daily routine broken down into "outcomes" like nutrition, personal care, social needs, access to community, work and learning support (there are more). It needs to be clear when going through these needs that you are concerned about contingency arrangements as a carer should anything happen to you, so although needs may be currently fully met by you there would be issues without someone else in place to take over should you become ill or die. They should also offer you a carers assessment to identify if you have any needs to be met to sustain your informal caring role. 

This applies to adult social care. I'm less familiar with children's services.

Hi Hoookaduckduck, thank you for your response and thank you nas72623 for asking this question. Although my child is still young, I do worry about the future. My child has not been assessed by social services. I never asked for it.  He is very high functioning, quite intelligent, but cannot go out on his own, doesn't do chores and has mobility and sensory issues and does suffer anxiety. Does the child need to meet a certain threshold in order for social services to carry out an assessment? 

Just to add, the waiting lists can be very long and there tends to be a lack of consistency in experience of LA services as they can vary greatly across areas and even social worker as we don't always work in the same way as each other. If you end up with a generic social worker, please don't be put off if they don't know a great deal about autism. You as a family are the experts of your loved ones autism and the social worker can look at those needs and support with finding the right services for you. I certainly didn't know lots about autism when I started, or even now when I'm recently diagnosed myself, but most of us will work tirelessly to try to understand and support you all.

I'm an autistic adult but happen to also have been a social worker for adult social care until recently. Your sibling can contact your local authority for a care act assessment. This legislation covers the eligibility for support from social care services via the local authority. A lot of LAs are now setting up autism teams because the demand is increasing and quite often autistic people don't fit within traditional learning disability or generic adults teams - they need support from people with good awareness of autistic needs. 

If there is no autism team yet then depending on whether they have a diagnosed learning disability they will be put on the waiting list for the most appropriate team to wait for a social worker to be allocated. Then with their help they'll support you all to create a support plan including contingency planning. 

Hi Mary Aunt of young autistic adult,

Thank you for sharing this with the community. You may like to contact our Parent to Parent service who offers emotional support to parents and carers of children or adults with autism. This service is confidential and run by trained parent volunteers who are all parents themselves of a child or adult with autism

You contact the team on 0808 800 4106. Please leave a message and the team will call you back as soon as possible at a time that suits you, including evenings and weekends. Alternatively you can use contact the team via web form: https://www.autism.org.uk/what-we-do/help-and-support/parent-to-parent

You may like to contact our Autism Helpline team who can provide you with information and advice.

https://www.autism.org.uk/what-we-do/help-and-support/helpline

You can call them on 0808 800 4104 (Monday to Friday 10am to 3pm.Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an adviser.

All the best,

ChloeMod