Parents, carers and disabled parents
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Living Independently with Care

Hi  - we’re in limbo as Panel (Social Services) are looking at my daughter’s situation. She’s hoping to live where we are now (Housing Association bungalow). We have assigned the tenancy to her and hope to move out. The agency care Social Services wanted to use can’t meet our daughter’s needs at the ludicrously low price they’re prepared to pay hence the panel deciding if she can have the carers she has now. The main query is: how do you find out about other potentially compatible house mates as she is open to sharing to share the cost of care. We’re all demented and totally stressed as Social Services have kept us waiting by chopping and changing for a year now. My daughter is seeing a counsellor for her anxiety. We want our own lives but we want her to be happily settled. Help!!! We are in East Anglia.

Replies

  • April2018momApril2018mom Posts: 2,869 Member
    Hello @Pinkbutterfly

    Have you asked the carers about activity options for the disabled? There are lots out there, have a look online or ask around. Or you could ask the council if they have any suggestions. 
  • PinkbutterflyPinkbutterfly Member Posts: 18 Courageous
    Hi - our carers are very proactive but they do not know what to suggest either. I would like to think that, as a Council employee, our social worker would tell us if she thought there was any one waiting to leave home who might be a match as a tenant. It’s very hard to know if she genuinely wants to help or if she’s deliberately stalling because we’re obviously the cheaper options for doing the caring. My daughter’s disabilities are predominantly physical, but she does have a cognitive learning disability and people who are similar seem very hard to find here. The Council is quite open about the fact that most facilities etc are geared towards those with mainly learning disabilities. 
  • April2018momApril2018mom Posts: 2,869 Member
    Hello @Pinkbutterfly

    We have had the same problem as you. I have researched activities online for my son but I have found that many activities that are described as suitable for disabled kids seem primarily to cater for those with the greatest need or in other words those with cognitive impairments. I don’t want my son to be bored all the time. Why does it need to be so difficult? After a week of searching, I did eventually manage to find something but it was far from appropriate for my son. So I stopped. 

    I have emailed to ask as well but there is very little out there for those with a physical disability only. So now we are looking at mainstream children’s clubs and activities instead. This is the problem really. We seem to have basically gone the other way but still have not achieved full inclusion. I am thinking of starting my own care company for physically disabled people. I could literally write a article on this topic.

    My suggestion is to use the Internet to do research. Ask on Facebook. Find out as much as possible. 
  • PinkbutterflyPinkbutterfly Member Posts: 18 Courageous
    [email protected], thanks for your advice. I am glad to hear from someone who can relate,although of course I wish your son could find something that he enjoyed with compatible people. I have often thought the same myself re setting something up for physically disabled people but I am too old, knackered and decrepit now 😂. Whereabouts are you? Things are certainly not fully inclusive as a lot of activities for disabled do not have disabled changing places and so my daughter cannot participate as she cannot go to the toilet without hoisting etc. It’s a shame we couldn’t meet up! But I am on fb if you want to chat 😊
  • April2018momApril2018mom Posts: 2,869 Member
    [email protected], thanks for your advice. I am glad to hear from someone who can relate,although of course I wish your son could find something that he enjoyed with compatible people. I have often thought the same myself re setting something up for physically disabled people but I am too old, knackered and decrepit now 😂. Whereabouts are you? Things are certainly not fully inclusive as a lot of activities for disabled do not have disabled changing places and so my daughter cannot participate as she cannot go to the toilet without hoisting etc. It’s a shame we couldn’t meet up! But I am on fb if you want to chat 😊
    Surrey, you?
  • PinkbutterflyPinkbutterfly Member Posts: 18 Courageous
  • April2018momApril2018mom Posts: 2,869 Member
    Norfolk
    I’ll add you on FB. 
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