Need help

Hi @Karen72

Thanks for posting on the Scope Community.

So, it sounds as if you are wanting to become more independent but there are a lot of environmental barriers preventing you from doing that. Overcoming those barriers maybe tricky, as you are probably going to have to do a lot of self-advocacy with statutory agencies, or try to find an advocate to do it on your behalf, and neither of those things are normally easy.

Also, you may need to negotiate with your parents some changes to the established routines of how things get done at home. I don’t wish to be insensitive, but obviously as your parents age they may not be able to assist you as much as they do now. So finding ways for them to be able to gradually step back from assisting you, might make for a smoother transition in the long term. However, I do really appreciate that such conversations can sometimes be very emotionally difficult. In the current economic climate, statutory services are all really short of money and so they have to prioritise those people most in need. If your parents give the professionals assessing your circumstances the impression that things are working well and they are happy to carry on providing for your housing and care indefinitely then you are unlikely to be a priority for funding/provision.

Housing needs: I understand that the size and lay out of your parent’s current kitchen prevents you from being able to prepare food for yourself. I strongly suspect that if an Occupational Therapist (OT) visited to assess both your needs and your parent’s home that it would be possible to suggest adaptations to the house and to the ways that you do things, that would enable you to be more independent. Major adaptations are often funded under the Disabled Facilities Grant Scheme: https://www.scope.org.uk/support/disabled-people/disabled-facilities-grant

The trouble is that the more suited your current home is to your needs the lower priority you will be for getting rehoused into your own council property. However, if the visiting OT was able to write you a report confirming that you are unable to prepare food in the property and your parents were not willing to allow adaptations and concerned that they are becoming too old themselves to be able to continue to cope with providing your meals, then you might find that the urgency to rehouse you to an accessible property may increase. Obviously, if at some point in the future, your parents decided that they were not willing/able to continue housing you and formally asked you to vacate, so that you were faced with potential homelessness, your rehousing priority may be considerably increased.  

Care Needs: If you wanted to be more independent from your parents, and they decided they were no longer willing to provide care, then I would suggest that you request that you an assessment of your care needs by the local authority. If they agree that you need some assistance and you meet their criteria they can either arrange a care package or provide a personal budget so that you can arrange your own carer/personal assistant.  For more information about care assessments see: https://www.scope.org.uk/Support/Disabled-people/Independent-living/Needs-assessments

Car: is it necessary for the car to always be parked in the garage that you are unable to access? Could it be parked somewhere else that you can access? There is equipment available that may well assist you with being able to get your wheelchair in and out the car yourself. You can see some examples of equipment by following these links: http://www.ricability.org.uk/content/hoists-and-lifts-wheelchairs-and-mobility-scooters  http://www.ricability.org.uk/content/stowing-wheelchair-boot-or-roof

Again, you would probably need to have an assessment to see what the best solution is for you. The organisation Drive Mobility:  https://www.drivingmobility.org.uk/ may be able to advice you about arranging an assessment of what is needed at your nearest centre. There may be considerable costs involved with the arranging the assessment and purchasing the equipment. If you are unable to meet these costs yourself you could explore the possibility of applying for charitable funding. This on-line grant finder tool may assist you in identifying grant giving organisations you can apply to:  https://www.scope.org.uk/support/disabled-people/search-grants

If you want to talk any of these issues through you could call or email the Scope Helpline 0808 800 3333 helpline@scope.org.uk

Hope this gives you some pointers and ideas, best wishes

Jean