OT: Respite care

[Guest guest]

Some of you may remember that all our respite care was stopped,

despite a recommendation from our family support worker to the

funding panel that it be increased (!) Panel meets again on Friday

and unless they reverse their earlier decision, the LA will have

legal proceedings issued against them.

The situation here now is:

I can't take Henry out of the house to walk down the street to the

bus stop/the local shops because he recently injured my shoulder by

yanking on my arm to escape.

He is now 8 and it is not appropriate for him to go into a disabled

buggy: his ABA programme is trying to get him to walk safely in the

street. He is also too heavy for the buggy.

I can't manage him in the park because he runs off and I can't catch

him. I tried it again on Saturday and passers by had to catch and

restrain him on several occasions as he headed for the road.It was a

total nightmare.

Because of the above I think I need another adult with me at all

times when taking him out.

When he goes to his father's, his father cannot give him much

attnation because he is also caring for his own very elderly father

who has dementia. Sometimes Henry's uncle is also there and this

makes things easier but Henry is not a priority and his needs do not

seem to be taken into account when he goes there. Yesterday he was

not taken out of the house except to go to church because his dad was

having to cope with both unaided. As a result, Henry had no exercise

at all and spent the entire day stimming (marbles, and spinning

plates) as far as I can tell. This undermines any progress from the

ABA programme.

I am suffering from several health problems including depression and

need some kind of social life and time to look after myself.On

Saturday I felt on the verge of walking out.

I think I need may help for at least 2 hours a day in the week and 8

hours at weekends. It sounds as though Henry's dad also needs help on

Sundays when henry is there. Part of the reason I think I need so

much help is the continuing refusal of Henry's dad to have any kind

of schedule or advance committment concerning Henry - so I can NEVER

plan ANY activity for myself. Also when he does say he's coming and I

am expecting to be able to flop out and relax at a certain time he

frequently is 45 minutes late or changes his mind at the last minute

and doesn't turn up at all. At these times I could gladly strangle

him. At the moment the situation is worse because of the situation

with the grandfather,but the father's habitual unreliabliity predates

the grandfather's dementia by several years.

If I don't get a lot more help then I think I shall have to get Henry

into boarding school, and there are no ABA boarding schools.

So I reckon we may need at least 20 hours a week respite. I heard of

one family in Southwark who wanted a bit more than the LA awarded and

took them to court. The court gave them a lot more...

Margaret