For key websites see Information.
NICE is recommending that GPs in England keep a register of patients with autism in order to improve the care they receive. The guidance from NICE needs to be accepted by NHS England before it is put into practice in GP surgeries in England. See also NICE.
For those worried about data security see Should people register? The information is stored at the NHS data centre and can only be seen with permission. People have to explain why they need your information and what they plan to do with it. This means that agencies such as social services, schools etc should not have access to this information.
Carers UK is a charity which works to help carers by providing information, advice, support and by campaigning for change. Click icon for their website.
- They offer a wide range of Help & advice including information on the range of financial support that is available to carers through the benefit system.
- For information about Carer Support specifically for carers of children under 18 and young carers see Carer Assessments.
- For more detaied information see resources. Having the right information at the right time can make a huge difference for the carer and the person they care for.
- Have a look at Talk to us about their Advice line including advice line hours: 0808 808 777.
For information specifically for carers of adults see adult Care & Support.
If you need legal support for a case about your child, maybe to do with care or adoption, you may want to know about CAFCAS. It stands for Children and Family Court Advisory and Support Service. Their website offers information for Children and Teenagers as well as Grown ups.
Here are some Top tips for dealing with CAFCAS from Net Mums. Also, it might also be worth bearing in mind that the people at CAFCAS may not know how to deal with a child on the autistic spectrum. This link to the National Autistic Society web page About autism could be useful if you wanted to print off some explanations that might help them to understand your child.
Things seem to have Improved according to Ofsted since 2008, when they found Progress inadequate, though their 2014 report also points to
areas where there is room for improvement. The Guardian reported on apparent Success in 2012 of a management initiative to make the “health and wellbeing of social workers a priority in the workplace”, which, the Guardian said, includes CAFCAS . So there seems to be some good news.
This UK based website offers a wealth of information. It is a national charity that strives to improve the lives of children with neurological conditions, through research, information and direct, on-going support. Click icon for their website. They have a Help & Info page. Topics include Anxiety, Money, School Transport and Research among many others.
They also produce a toolkit that aims to support disabled people and carers, as well as their families and advisers, who are encountering difficulties with the statutory agencies in relation to the provision of health, social care and education support services. It was developed at Cardiff Law School. Click icon to view.
Learning Disability Partnership
The Lincolnshire Learning Disability Partnership Board aims to make sure that different people, organisations and agencies work together to improve the lives of people with learning disabilities. Board members include: people with a learning disability, parents and carers. See website for more about them. Email: Marie.firstname.lastname@example.org 01522 706 580
Lincolnshire Autism Partnership
The LAPB is designed to try and improve support for autistic people. Have your say. See: LAS news LAPB Lived Experience The A Team history Email: Autism.Partnership@lincolnshire.gov.uk They launched a monthly newsletter Autism Lincs early 2017. See Issue 1 and click Past Issues at top left of screen to find all issues.
Stickman Communications produces a range of colourful awareness cards. See range of cards Prices are in £, as with the NAS below.
The National Autistic Society (NAS) also produces an autism alert card that could be useful in public spaces, like a supermarket: single plastic wallet with card to keep inside and a key facts leaflet. See also photos of what looks like the same thing
Steve Silberman puts some flesh on the bones of this slogan with hard-headed analysis and vision. Click icon to view article. It has a 14 minute video at the bottom of the page that explains his thinking.
Dealing with stress & panic attacks
It would be nice to get to the root cause of difficulties, but it may often be a case of finding ways to cope with the effects. Here are are a couple of fact sheets that might be worth a look:
Click icon for a Healthwatch Lincolnshire statement about difficulties getting an NHS Dentist in Spalding after a meeting on 31st October 2017.
Please be aware that we, at GAIN, are not qualified to give advice. See disclaimer.