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Parents need to live Forever

(2 Posts)
VK3QQ Mon 27-Feb-12 21:38:08

One of the major problems for parents of an adult family member with an intellectual disability (learning disability) here in Australia, is departing this world, or being too old to continue providing 24/7 care in the family home, and leaving their very vulnerable son or daughter to an uncertain future - The potential for questionable quality and level of care, especially quality of life care.

Most care services here are 'charity based hand-out', rather than ‘entitlement’, and provided mainly by government direct service, or government funded group home supported accommodation, or similar.

We are interested to know if UK parents feel comfortable about similar care services operated/organised by UK local authorities, and such organisations as MENCAP, NAS, etc, etc.

Just how easy is it for UK aging parents to get support services for their adult family member, and are these services an entitlement in a similar way to medical and dental services are an entitlement under the NHS.

Heather & Tony Tregale
Melbourne, Australia

rachyrah Tue 20-Aug-13 21:57:51

My ADHD&ASD son is seven, hence we haven't accessed any adult services yet personally. One thing that is clear from other parents at ASD support groups is that they feel all support is transient and has the potential to withdraw or change, regardless of wether it is a private, charity or public venture. This is the scariest prospect for most. Charities, services and local authority led health-care type provisions (speech therapy, ed psych, paediatrician etc) work in a standalone sort of way, usually with little relation to each other or even awareness if each other. Hence as a parent I have the constant battle of firstly finding out what is out there, both public, charity and private; this is often the biggest single block. Next is accessing the service, then securing funding.. So as an ageing parent, I expect I will have various provisions in place for my son, from housing & benefits through to attendance at social sessions. But what happens when something is withdrawn? If a professional who has an advocacy role for my son looses their job through the latest government policy shake up, the professional tends to just disappear off the scene and the constant fight to ensure a level of care is amplified whilst I try to find out what alternative there is, how to access it, secure funding etc. Who will be my son's advocate constantly? The only job role that never ends is a parent and this is why it is difficult. Personally it makes little difference to me where help comes from, be it charity or public, as long as it is consistent, reliable and has longevity. The services are not available like dentistry, you have to find out, apply, secure funding and generally jump through many hoops before accessing anything. Hope this helps!

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