Need Help about Residential Places for my Son

[LilyRose]

Due to the NHS closing my son's respite eventually-at the moment it's been granted a reprieve as nothing is available to take its place- and also his Day centre probably closing and the local care homes . I contacted my social worker for help. I wanted to know if we decided that we couldn't cope any longer how could i get him into a specialist home etc.
Her answer was she couldn't help me and didn't know anyone who could. we don't really want him to go but we know it's got to happen one day wheen we get to old to look after him.

Can anyone give me any advice on the subject?

Thanks
Lily

[charles47]

Lilyrose you have the right to say "I cannot care any longer for my son." The local authority HAS to act. There is no excuse for refusing to do so as long as he falls into the category of person who is eligible for services. As he receives services, he is eligible. End of story - they are playing hard to get because they know that if they call your bluff you will give in and accept the scraps they let you have.

[pamr]

hi
we to are coming to the time when we need to organise our daughters future without us.

its very difficult, but i would rather do it now whilst we her parents are around to see that everything is working properly, we do not want an emergency situation where she is put anywhere there is a place, good or bad. feels terrible thinking about it though.

we have been advised to consider supported living. to find two other people with a severe learning disability whose parents want there son or daughter to move on. they would rent a council property (hopefully a bungalow), the rent to be paid for with housing benefit. then a pakage of 24 hr. care would be set up. she could go to her day centre if she wished or go out into the community with carers if there are suitable activities going on.

i have been advised to actually get her name onto the council housing list. we are looking at 3-5 yrs. time for this, but of course it is going to take an awful lot of planning and organisation. at the moment nobody seems to be able to tell me who would manage the money side of things, i.e. her benefits, paying for utilities etc. so i have to find the answers to that. we also have two sons, and although of course i want them to keep in touch with their sister, they have their own lives to lead and i do not want to burden them with the day to day organisation of our daughters money.

is there anybody out there who has had any experience of doing something similar. i would love to hear how it works out.

it was interesting to here that staff at her day centre advised us not to use a residential home as they have all sorts of problems with their service users who live in residential homes, i.e. coming into day centre with dirty clothes on is just one complaint.

pam

[normangardner]

Hi Lily, I think the Government have just given you their answer. When you have an emergency, then the local authority will have funds to cope with it. If you have private means it may be possible as suggested above to join with others in a similar situation to yourself, to buy and staff a communal home using individual budgets. I have no experience of this, but it may be a possible alternative. Especially if you can grant power of attorney over your son's affairs to a solicitor or doctor. So that his interests can be looked after when you are unable to do so.
The Kiloran Trust in London do respite care and you may be able to get a Time For Me Grant from your local Carers Group to help meet tha costs of a short break. Alternatively ring the carers helpline on this site, under the Information or contact us headings above.
best wishes normangardner

[Daisy]

Hello Lily
What a dreadful position to be put in. We have an autistic son of 21 and we are having a heck of a battle to have any day care services for him. We were told that if we decided on residential care we would have no problems finding somewhere. The government is keen for disabled people to be supported at home and remain in the community but take away the very help and structure needed.
Have you contacted the National Autistic Society, they provide details of residential homes throughout the country and they can also offer informed help and support.
Autistic children are presently making there way through the education system with far more outspoken and politically aware parents than a few years ago. When those children finally leave education a huge gaping hole in services awaits them.
Good luck.

[pamr]

norman, your reply seems to say that, supported living as an alternative to resedential care can only be achieved by someone with enough money to buy a property for their son/daughter. as far as i am aware this is not so, property can be rented from a local authority or housing association for this purpose. this can be done with a small group of people, i.e. 2-4, thus sharing their own home together and having whatever amount of care each individual is assessed as needing, be it just a couple of ours a day or 24 hours per day.

like all these things it seems like a minefield, but one i think worth trying if its to make a better life for the ones we care so much about. if it fails, then there is always the option of resedential care as a backup.

[normangardner]

Thanks for that Pamr.
I was thinking of the model used by university students in Lancaster, whose parents live in Hong Kong. Many years ago a group of parents bought houses in Lancaster for their children to live in whilst at University, and the houses have been passed on from parent to parent as each generation of students graduate. They all gain from the increase in value of the house whilst their children are resident in the house living rent free.
I think the present acute housing shortage will make a local authority or housing association tenancy very difficult, without the support of Social services.
One possibility is to set up a charity or similar organisation, which would renovate a property which has been acquired by Local Authority or HA, and then for some reason they have not let it. Eg, a new road may have been planned and land and houses aquired for demolition, but the planned road has not been built yet. As is the case in part of the North Circular Road in London for example. There are other schemes where registered squats are agreed, for use by the homeless. I think Shelter would be a good starting point for exploring that possibility.
best wishes normangardner

[pamr]

hi
yes none of my plan would suceed without a social services assessment. we have already had a referral for this.

i hope our discussion has given lily some food for thought.
regards pam

[snoopy]

I really hope that Lily can receive some advice on supported living from someone who has experience of this. Is there anyone out there who can provide this?

[rosemary]

Hi Lily,

I have checked your profile to find out what part of the country you come from but its not there.

We have a company up here ( Sunderland/Newcastle ) which has residential placements for adults with autism.It also has colleges for those adults still at home but attend as a day student.

It can take several years to get a placement and like we all know, it depends on assessments and funding.How many of us have had one battle after another to get that.

Their places really are home from home,the staff great and so many activities can be accessed.There is not enough hours in the day for me to praise their organisation enough.

I am putting the link anyways in case it can help any other parents out there.

http://www.espa.org.uk/espa/company.htm

If you take all the above away,the assessments..the funding...one of the main things that is the hardest to cope with is letting go.Albeit a parent into care due to illness/disability or son/daughter /any loved one in to a residential place.We have to have faith in those who will take over from us,we have to have trust in staff and a relationship with them that can be built on.For me personally,I have 200 % faith/trust in the team/organisation.

Hope this can help someone out there.

Hope you and your loved ones are well.
Be strong
Rosemary
x x x