Implementing 'Fulfilling and rewarding lives': consultation for statutory guidance for local authorities and NHS organisations
Implementing 'Fulfilling and rewarding lives': consultation for statutory guidance for local authorities and NHS organisations to support implementation of the autism strategy
This consultation seeks views on the draft guidance to health and social care services. The guidance has been drafted to support the implementation of the Autism Strategy 'Fulfilling and rewarding lives'.
This draft guidance should be seen in the wider economic and public spending context. It includes some elements which we are confident can be delivered within current health and social care resources. But other proposals may require additional investment or redistribution of funding and we are looking at the relative costs and benefits of these. No decisions will be taken before the Spending Review is complete in October 2010.
The guidance focuses on the seven areas required by the Autism Act 2009, in each case identifying what health and social services bodies are already expected to do, and then setting out any additional requirements introduced by the strategy. The additional requirements are focused on achieving two key outcomes:
- improving the way health and social care services identify the needs of adults with autism, and
- ensuring identified needs are met more effectively to improve the health and well-being of adults with autism.
Specific questions on the draft guidance are raised within the consultation document
We want to hear from
- adults with autism, their families and carers
- health and social care bodies responsible for the planning, commissioning and provision of services for adults with autism and their families
- representative local and national organisations
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health and social care professionals, and
any other party with an interest in improving the health and social care provided to adults with autism and their families and carers
The consultation will run from 29 July 2010 to 22 October 2010
- Download consultation document: Implementing 'Fulfilling and Rewarding Lives' (PDF, 2767K)
- Download questionnaire booklet (DOC, 192K)
- Download Easy read version of the consultation document (PDF, 2113K)
- Download Easy read version of the consultation document (with yellow background) (PDF, 2214K)
- Download answers booklet - Easy read version (tagged version will be available) (PDF, 957K)
- Download answers booklet - Easy read version with yellow background (tagged version will be available) (PDF, 1011K)
- Download impact assessment (PDF, 378K)
- Download equality impact assessment (PDF, 127K)
Consultation pack
- Download Running your own local discussions (DOC, 50K)
- Download Department of Health consultation events (DOC, 104K)
- Download Event agenda (DOC, 34K)
- Download Event presentation 13 July 2010 (PPT, 108K)
- Download Event facilitators feedback form (DOC, 28K)
- Download Event comments form (DOC, 36K)
- Download Involving people with autism (PDF, 529K)
- Download Your services your say (PDF, 1270K)
- Download Your services your say - Easy read version (PDF, 341K)
Responding to the consultation
Respondents are invited to send their responses to the questions in the consultation document by post or email to
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Contact:Autism Strategy - Statutory Guidance Consultation
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Address:Room 115
Wellington House
133-155 Waterloo Road
London
SE1 8UG
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Email:
http://www.dh.gov.uk/en/Consultations/Liveconsultations/DH_118058
PDF version At the moment various consultations, publications and reports are in progress and are being published when the findings are known. I have seen and have listed consultations and publications which deals with learning difficulties, mental health, dementia, autism, wider social and mental health and other than the publication by Sigma Research last year http://www.sigmaresearch.org.uk/go.php/reports/report2009e/ excluding Scotland and Wales I have not directly come across a UK direct consultation relating to HIV/AIDS.
I have therefore submitted a Freedom of Information request to the Dept. of Health today to enquire and the reasoning.
Whilst many disabling conditions have similar arguments and seek support, my initial analysis shows that HIV/AIDS is at the bottom of a league table if one such exists.
This is based upon the numbers already available and published upon HIV Benefits website. These figures also take into consideration the total numbers of people with a condition or disability and compare the numbers being supported and accessing various kinds of support and services. The United Kingdom has 10 million disabled people of which 3 million receive Disability Living Allowance and 21,500 are supported through the Independent Living Fund.
Kevin
Benefits & Entitlements
Looking after a child with autism can put extra strain on your finances to say the least.
There could be extra washing, extra nappies, special equipment, travelling expenses all the running around to doctors , hospitals, appointments etc. You could have to give up work, Or take on a carer for your child The list really does go on and on.
Fortunately financial help is available .
Unfortunately our experience is that you are not always told of all the benefits available. And you have to search them out for yourself.
Some of the forms you get can seem at first sight rather daunting.
Our advice is this :
Take your time in filling out the forms. Set time aside when you can sit down and read them through carefully. You need to give as much information as possible and do not be afraid to include copies of reports etc. to back up information you give. With the D.L.A. forms for example it is helpful to include a sleep diary. Your health visitor should be able to help you with this. In fact your health visitor is a valuable source of help in filling out all forms concerning your child.
Take photocopies of all forms and documents, also keep a diary of phone calls and posting. This can be very helpful in the future. You will often get a phone call to check on details and letters still do get lost in the post!
(PS my experience} This was a very emotional time for me. As a mother to see certain facts in black and white was very difficult. I recommend a box of tissues. JS
D.L.A. Disability Living Allowence
DLA is an important benefit for families in the UK who are bringing up an Autistic child.
DLA is not Means Tested, so just about everyone should be able to apply.
For more details please see our DLA page Disability Living Allowence
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Links
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| National Autistic Society | This is a great page from the National Autistic Society. It provides information on all benefits available along with help in filling out the forms. |
| D.S.S. | The official site of the Department of Social Security |
| Citizens Advice Bureau | The official site. |
| Motability | Motability site. Useful information for those claiming or getting D.L.A. at the higher rate. |
| Family Fund Trust | The Family Fund Trust helps families with severely disabled children. They can supply grants for such things as holiday, washing machine & tumble dryer, bedding & clothing , replacement bed if needed due to childs disability plus many more relating to your childs special needs. |
| The Ferret | An interesting site that gives you a check on which benefits you may be entitled to via a questionnaire. There is a charge for the service they offer. |
A consultation to help improve care services and healthcare outcomes for adults with autism in England was launched today by Care Services Minister Paul Burstow.
This is the next step to help adults with autism live full and independent lives as equal and included citizens and follows the publication of the strategy for adults with autism: Fulfilling and rewarding lives.
The strategy sets a clear framework for all mainstream public sector services to support adults with autism and is backed up by the Autism Act 2009, the first ever condition specific legislation.
The 12-week consultation process seeks views from those with autism, their families, carers, representative organisations and all sectors of society on a number of important issues such as:
Care Services Minister Paul Burstow said:
“I hope people will take part in this opportunity to influence the direction and progress of our autism programme.
“It is unacceptable when adults with autism do not get the right care and support they need from health and social care services.
“The Government wants the consultation to reach as many people as possible, in line with our goal of giving people more say in the decisions that affect their lives. These views will help shape our priorities as we seek to help adults with autism live fulfilling and rewarding lives.”
Mark Lever, Chief Executive of the National Autistic Society, said:
“This is the vital next step people with autism and their families have been waiting for. During the passage of the Autism Act, Parliament described this statutory guidance as the 'teeth' of the Act, so it is vital that it secures real and lasting change at ground level.
“Now, I’d like to urge as many adults with autism, their parents and carers to take part in the consultation to make sure it is robust and can be used to hold their local services to account. The right support at the right time can make an enormous difference to peoples’ lives.”
The statutory guidance for health and social care will be published by December 2010. The strategy will be reviewed in 2013.
Notes to editors
1. The consultation will run for a 12-week period from 30 July to 22 October 2010.
2. Full consultation materials can be downloaded by clicking on the consultations link on the home page of www.dh.gov.uk
3. There are a range of ways for people to respond to the consultation, including:
http://www.dh.gov.uk/en/MediaCentre/Pressreleases/DH_118090