Learning difficulties and Benefits forms.

[JL1345]

I was hoping some of you wonderful parents can point me the right direction.

As parents of a Daughter with Autism and who has no concept of money nor of where it comes from and who is completely reliant on state financial help, we recently had to apply for PIP to replace her DLA, the form we filled in was difficult to complete by us her parents acting as her advisor.

It made me think about how she'll never be able to cope when both of us pass away, i know it worries our daughter too because she fears she's going end up living on the streets if we die.

all her close family relations are getting on in years so we wondered who we can safely turn to to help her in making future PIP claims, she cant do such things herself.

Is there somebody or charity body who we can trust to fight her corner as vigorously as we have had to do every few years when making these applications.

Her condition will never change but as regular as clockwork about evert two years she needs to make a new claim.

It worries us sick.

does anyone have a similar concern or possibly a solution to our daughters and ours plight.

The Citizen's Advice Bureau will help her with forms and anything of a similar nature. Also check to see if there is an advocacy charity/agency in your area. There is in mine.
They're

Can her social worker recommend anyone?
Or the Learning Disability Community Nurse?

Mencap also may be able to help or direct you towards someone who can. www.mencap.org.uk/advice-and-support/services-you-can-count/advocacy They have a helpline.

Also, the National Autistic Society has a list of Advocacy services in different areas and you can call them for advice. www.autism.org.uk/directory/browse/cid=51~aid=1.aspx

Hi, thank you all for your replies, experience says social work won't suggest help or step until it's actually needed, we need peace of mind now and not carry this kind of concern for the remainder of our lives and more importantly people in similar position to that of our daughter need reassurance that they'll be ok when their parents go.

What is it with Parliament and the DWP that they make such groups of people with lifelong disabilities jump through hoops every couple of years when it's quite clear they will never recover from their disability.

We'll look into the advocacy services option, i'm sure there will something near by.

Many thanks.

Depending on your local area there might be a benefits advisor who specialises in disability benefits, some of these places do home visits too if the person would struggle leaving home/bed bound. Obviously citizens advice will help but some have more experience independent charity based services.

Locally we have community connectors who can help put you in touch with the services best suited and even take you to initial appointments so it’s a familiar face when entering a strange environment.

Also photocopy and keep copies of all forms you send off, you can rewrite it again or have someone else review it easier if you were turned down. Some of it can be down to wording or details left out.

I'm applying for PIP now, i live in Dorset & im getting help with the form from a charity called Diverse Abilities- for £45 fee. They will also attend Tribunal with me if my application fails.
There may be a similar service in your area? Local gp surgery / learning disability services/ social services/ cab / community mental health team should all know of local services that can help your daughter with the forms.

Also I kept my old DLA form which may help me fill in the PIP form.
Keep copies of everything in a file for your daughter.