Dealing with Situations Involving the Police

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This information is for anyone who may have come into contact with the police: what to expect and what you can do if you are unhappy with the way a situation was handled.  

People with Down’s syndrome may come into contact with the police because they have been missing, because they have witnessed a suspected crime, they are accused of committing a crime, or due to a mental health crisis.
You should always be offered a record of police involvement with you or your family.  You may need this information if you want to speak to them again or if you want to complain about the way they dealt with your situation.
Complaints should be made as soon as possible after the situation you want to complain about.

What happens when someone goes missing?

If someone goes missing there are rules about timeframes for reporting it.  If it is a missing child, they should be reported missing straight away.
For adults and older children, you may face some resistance in reporting them missing.  Be ready to explain the circumstances, when someone went missing, their vulnerabilities and whether or not this is out of character.
The police records should include information about where someone was found and what they did or who they saw while they were missing.  As a parent or carer you are likely to want similar information.  To obtain this information you would need to make a freedom of information request to the police authority on behalf of your son or daughter.  There is normally a cost associated with this.  You would only receive information that relates to your son or daughter.
When to raise concerns
If you believe that the police are withholding information that could inform safety planning, you could consider making a complaint with the support of children or adult social care services.

How should the police deal with Vulnerable Witnesses?

There are clear procedures that must be followed if someone is considered to be a Vulnerable Witness – the procedures are referred to as Special Measures.  The guidance published by the Ministry of Justice is “Achieving Best Evidence in Criminal Proceedings: Guidance on interviewing victims and witnesses, and guidance on using special measures”.
When to raise concerns
If you believe that the police have not provided sufficient support (providing a suitable environment, communication approach, etc), then consider following the complaints process detailed at the end of this document.

What should happen if someone with Down’s syndrome is suspected of committing a crime?

If the police suspect that someone may be a ‘mentally disordered or mentally vulnerable’ adult’ (this includes any adult with a learning disability), they must make sure that an Appropriate Adult is available to safeguard their rights and welfare.   All children have a right to an Appropriate Adult.  Any person who is not connected to the police investigation can act as an Appropriate Adult.
When to raise concerns
The police should not ask someone to be interviewed or do anything for them (such as provide fingerprints, samples or photos) without an Appropriate Adult if they need one.  If the police do not provide an Appropriate Adult, any evidence they have obtained (without them) may not be admissible in court.  If a situation arises when someone has been interviewed as a suspect without an Appropriate Adult, you can support them to speak to a solicitor about challenging any evidence that is obtained in the absence of appropriate support.  If needed, you can act as their litigation friend.

How to Complain

Complaints in Person
If you want to complain in person, you can ask to speak to someone more senior than the person you want to complain about.  You can take someone with you, such as a family member, friend, solicitor or advocate.
You can also ask someone else to complain on your behalf, but you must give your consent in writing for them to do so.  Your Citizen’s Advice Bureau or your MP may support you in making a complaint.
Complaints in Writing
You may also want to complain in writing.  Police forces will have a complaints department that you can write to with your complaint.  Information about how to complain to your local police force is on their website.  Alternatively, the Independent Police Complaints Commission has an online form that you can use to complain to your police force.  You can also download the forms, print them, hand-deliver, post or email them.  This also allows you to keep a record of your complaint so that you can use it later if you do not feel that your complaint has been satisfactorily resolved. In some circumstances the police force must refer complaints to the Independent Complaints Commission,  for example, if someone says they were seriously assaulted by a police officer.  You can also complain to the Independent Police Complaints Commission.
Once you have made your complaint a decision will be made about the next steps.
What May Happen to Your Complaint
Your complaint may be resolved by giving you a written explanation of what happened or providing you with some information.  If this is not possible your complaint will need to be looked into.  You should be advised about the steps the police force will be taking in relation to your complaint.
If your complaint is going to be looked into, you will be contacted to make sure that the person investigating has all the information they need about your complaint.  You should have the opportunity to say what you would like to see happen as a result of your complaint.  You should also be told what is likely to happen as a result of your complaint and what steps will be taken to deal with your complaint.
Wherever possible local resolution will be used to deal with complaints; this may involve some investigation of your complaint.  In some circumstances complaints must be fully investigated.  Local resolution may include an explanation, information, apology, a meeting, changes in process or policy.
If your complaint is more serious or cannot be dealt with by local resolution, then a local investigation should be undertaken.  The investigation may only address certain areas – you will be given a written copy of these ‘terms of reference’.  You should be kept informed about the progress of any investigation as well as the outcome.   The letter telling you about the outcome of your complaint should include information about how to appeal about the decision made by the police force.
How to Appeal About a Complaint
In some circumstances you can complain to the police force or the Independent Police Complaints Commission.  The right to appeal may have time limits.  You should try to appeal as soon as possible after receiving the outcome of your complaint, but you may wish to seek advice about your appeal.  If this is the case you should write to the force informing them that you intend to appeal.
You can read information about how to make a complaint about the police on the Independent Police Complaints Commission website.  There is also an easy read guide – this would help get written consent if you need it:
Posted in General

Update on the Harvest Project in Northern Ireland

Donna Lynch, DSA Regional Manager

Throughout  2015 we have had a flourish of activity in our Harvest Project groups. We have had baking nights, games nights, karaoke evenings, pizza evenings, park walks, BBQ’s, discos, trips to the theatre, trips to the cinema and much, much  more.

Our groups have given our older population a chance to make new friends and given them the opportunity to try new activities. These groups have given so much fun, love and joy to all of our lives for members, staff and volunteers as you can see:
NI Blog 23 July 2015 1  NI Blog 23 July 2015 2NI Blog 23 July 2015 3  NI Blog 23 July 2015 4NI Blog 23 July 2015 5  NI Blog 23 July 2015 6NI Blog 23 July 2015 7  NI Blog 23 July 2015 8  NI Blog 23 July 2015 9NI Blog 23 July 2015 10  NI Blog 23 July 2015 11  NI Blog 23 July 2015 12  NI Blog 23 July 2015 13  NI Blog 23 July 2015 14
We closed our groups at the end of June. Over the months of July and August we are having days out and 4 holiday weekends.  For all the dates please visit our website
If you are an adult with Down’s syndrome or know of someone who could use this service please contact our office on 02890 665 260
The Harvest Project is funded by the Big Lottery through their programme: Reaching Out – Connecting Older People.
NI Blog 23 July 2015 15
Posted in Northern Ireland

Delay to Changes in Law Governing Additional Needs Education in Wales

The DSA has been part of a network of charities working with Welsh Government on reforms to the additional needs education system in Wales for a long while – initial consultation regarding this began as far back as 2007.

We feel it is important to highlight to all parents that the current statementing legislation in Wales still stands and will do for the foreseeable future.
We have heard reports from some families that their local authority has  told them “statements have gone” or “we don’t issue statements anymore”. This information is incorrect and you should be aware that it is your right, in law, to request a statement for your child and all local authorities in Wales have an obligation to respond to that request.
There is a very useful section on our website about education law This has recently been updated to reflect the most recent news from Welsh Government.
Welsh Education Minister, Huw Lewis AM, has just released a consultation document on the proposed changes to additional needs education in Wales – the Bill will be published in draft, with comments being sought between now and December. The DSA will be submitting a response in due course and we would urge all parents to take a look at the consultation paper and make their own individual responses as well. The documents can be downloaded here
It will be for the new Welsh Assembly (post elections next May) to implement the Bill and so currently we have no date confirmed as to when this might take place.  At a recent meeting with the Welsh Education Minister, he assured us that he will write to all Heads of Education Service across Wales reminding them of their duties in relation to issuing statements for children with additional needs and that, for the time being, the status quo applies. If you have an queries relating to this please contact Julian Hallett, Wales Manager , Lesley Black, Education Officer on  or call our helpline on 0333 12 12 300.
For further information about our work in Wales, please go to our website
Posted in Education, Wales

DSA Training Autumn 2015

Training photoa

Thank you to all the parents and practitioners who attended our recent Supporting Early Development and Supporting Social Development training days. The training once again highlighted the benefits of learning with other parents, carers and practitioners.  

Feedback from the day included: ‘very positive, normalised a lot of learning approaches into easy ways to help my child’

Autumn Programme

Our summer series is nearly complete and we are looking forward to our Autumn programme:
  • Support and practice for young people in secondary education: 2 October 2015
  • Supporting early development: 8 October 2015
  • Support and practice in early years and primary education:  6 November  2015
  • Supporting social development and behaviour : 2 December 2015
Places are still available, so for all full details and to register please visit our dedicated Education and Development page
Details will follow soon for Understanding dual diagnosis of autism spectrum condition and Down’s syndrome in the East of England and Supporting children and young people in primary and secondary education in the North West.
To see our full range of Training and Support Services, please visit our website
Posted in Training

Kate’s Update

Originally posted on Down 2 Earth Magazine Editor's Blog:

Kate’s Update


                       Mum  and dad and I went to South Wales  for

                       Four days with the Larondina dance company

                       And danced on the island we all had a

                       good time together, that was wonderful.

                       We also  went to the seaside for a week and

                         And really  had a good time together. We

                      visited  the Turner exhibition

                       It  was   a hot day it was great fun

                         And the  Chilli beans drama group I am in

                       are doing a Comedy show called

                        Mac Village. Everyone is so excited.

                         Everyone is looking forward to the

                         show next week – bring it on!

View original

Posted in Uncategorized

Summer Budget 8 July 2015

The July Budget introduced many changes to the benefits system which will affect people with Down’s syndrome and their families. 

It is important to note that most changes will not take place until 2017, and that disability benefits are largely protected. Disability Living Allowance and Personal Independence Payment remain exempt from tax.
If you have concerns about your situation, please ring the DSA Benefits Advisers on 0333 12 12 300, Monday to Friday, 10-4 or email
This is a summary of the main changes affecting people with Down’s syndrome:
Employment and Support Allowance (ESA)
From April 2017, the rate of ESA for people in the Work-related activity group will be the same as the rate of Jobseekers Allowance, currently £73.10 per week. They will not receive the existing work-related activity component, currently £29.05 per week. This is for NEW CLAIMANTS ONLY. People already on ESA in the work-related activity group will NOT lose the amount they already receive.
People in the ESA work-related activity group are to be given more help to look for work.
Freeze on working age benefits
Benefits for people of working age will be frozen for the next 4 years. This includes Housing Benefit.
It does not include Disability Living Allowance (DLA), Personal Independence Payment (PIP), the disability elements of Tax Credits, or the ESA Support group. It does include the ESA Work-related activity group.
Changes for 18-21 year olds
  • From April 2017, 18-21 year olds who are out of work will not get housing support if they make a NEW claim for Universal Credit. Vulnerable young people are exempted and will continue to get housing support in Universal Credit. We hope this will include people with Down’s syndrome.
  • There will be a new Youth Obligation for 18-21 year olds. From the start of their claim for Universal Credit, they will be required to prepare for work or training/education and go into work or training/education after 6 months.
As far as we know, at the moment, no one with Down’s syndrome is on Universal Credit.
Cuts in Tax Credits and Universal Credit for families with more than 2 children
  • For children born after April 2017, no Child Elements will be paid in Tax Credits or Housing Benefit for a third or subsequent child. This will also apply to new claims for Universal Credit from the same date. People already on Tax Credits or Universal Credit in April 2017 will not lose the money they already receive (as long as their claim is not stopped for longer than 6 months).
Children with disabilities born to larger families will continue to get the Disabled and Severely Disabled Child elements in Tax Credits and Universal Credit. But even disabled children will not get the Child Element they receive now.
  • Those starting a family after April 2017 will also not receive the Family element (Tax Credits) or the single child premium (Universal Credit) of £545 a year. In Housing Benefit, the family element will stop from April 2016.
  • Child Benefit will still be paid for all children as now.
Reduction in Housing Benefit for people in social housing
Rents for social housing will be reduced by 1% a year for the next 4 years.
The household benefits cap reduced
The household benefits cap will be £20,000, single rate £13,400. Households in London will be capped at £23,000, single rate £15,410.
Parents on Universal Credit expected to look for work sooner
From April 2017, parents claiming Universal Credit will have to prepare for work when their youngest child turns 2, and seek work once their youngest child turns 3. This includes lone parents.
Changes to Tax Credits thresholds and tapers
From 2016/17, the threshold at which earnings start to reduce tax credit is being reduced from £6,420 to £3,850. Tax Credits will also be tapered off at a sharper rate (48 pence for every extra pound earned, up from 41 pence). Similar changes are being made in Universal Credit work allowances (the equivalent to the earnings threshold).
Support for mortgage interest (SMI)
From April 2018, support for mortgage interest will be changed to a loan, to be re-paid after the house is sold, or when the claimant starts working again.
Extension of free childcare
From September 2017, working families will get 30 hours of free childcare for 3 and 4 year olds per week, up from 15 hours currently.
Details of how the changes will work in practice are still unclear. We will update this information as soon as we can.
For further information about benefits, please contact our helpline on 0333 1212 300 or email us on
Posted in Benefits

Learning disability Nursing – now what’s that all about?

By Helen Laverty (Professional Lead Learning Disability Nursing, University of Nottingham)

Over the last 100 hundred years the history of learning disability nursing has been littered with rumour, mystery and prejudice:
  • There’s no future in it; you are not real nurses; you don’t need to be very clever to do it; you don’t need nurses to care for people with a learning disability
  • It only happens behind high walls and closed doors; it’s only about ‘warehousing people’, there’s no future in it
  • It doesn’t take a nurse to care for someone with a learning disability, anyone can do it
So what is a learning disability nurse? He or she is an individual with a passion to ensure people with a learning disability get what you and I take for granted. The learning disability nurse is a highly skilled individual who has undertaken a university programme leading to both an academic qualification and professional qualification in nursing the individual who has a learning disability.
What do learning disability nurses do?
They work in a range of settings across a lifetime continuum to facilitate lifestyle choices for individuals, their families and significant others. Those settings could be in a large general hospital to ensure a smooth pathway for someone through the scary world of health care (Health Facilitators). They could be school nurses ensuring the health needs of your child are met effectively in the school day and beyond.  They could work in specialist assessment and treatment centres where individuals with a learning disability receive intensive care at a crisis point in their life. Learning disability nurses work in nursing homes, residential homes and supported living, facilitating a valued lifestyle for the individual that promotes inclusion, rights, choice and fun.
Learning disability nurses have a unique skill set that if utilised effectively not only bring about real positive change for an individual and their family, but upholds the value base of a right to a meaningful, fully participative life, not just a service.
Many of you will have come across a learning disability nurse employed in a community nursing team.  These teams have different focuses dependent on the county in which you live in, but are there to help with the good and not so good times in the lives of people with a learning disability; their intervention could be at transition, or through a particularly stressful life event.
What don’t learning disability nurses do?
Wear uniforms that are more commonly associated with hospitals, but apart from that they pretty much take part in every conceivable aspect of the life of an individual that promotes inclusion.
We are the smallest field of nursing, and often overlooked! I’ve yet to see a learning disability nurse on Casualty or Holby City!
As families you need to be assured that working with and for people with a learning disability is a Positive Choice –  Everyone who joins the profession does so because they want to make sure people with a learning disability get what you and I take for granted.
Why did I become a Learning Disability nurse?
I was 14 and school had a curriculum change, no more compulsory RE but everyone had to do ‘beliefs and values’ which included some placement time.  I was allocated a Wednesday once a week for a term in a special school.  Learning Disabilities hadn’t really crossed my horizons then, or that of my family.  I clearly remember tea the night before asking my mum what she thought the kids would be like – she said ‘well just kids!’ I duly turned up the next morning at 8.30 full of trepidation but a little bit excited, and was allocated to class 2 little ones who were rising 7 year olds and was hooked! I had one burning question at the end of the day…’why did some kids have lovely socks and the others have grey nylon ones?’ (you see my mum still always puts great store by frilly white socks it’s her stock response when someone has a baby ‘I’ll get some pretty socks!’ ).
When I asked my mum about the grey socks at home she didn’t know and told me to ask the teacher. The teacher explained that every child I pointed out to her lived in the long stay hospital just across the way.  I couldn’t understand this as they weren’t poorly, where were their mummies and daddies?  So I asked if I could go and see where they lived. The following week at the end of the day the nurses who came to take the children ‘home’ invited me to go to.  I have to say the children were just as excited to see the nurses as the others who were going home were to see mums and taxi drivers.
The rest, as they say , is history.  My life changed and I never wanted to do anything else but work with and for people who have a learning disability.  My school weren’t very supportive as I was a grammar school girl and to quote the careers teacher ‘too clever to wipe bottoms and blow noses’, but I stayed true to my convictions.  I have worked in some lovely environments and some not so lovely, but have always done my best and led by example and yes when I worked in children’s services everyone had nice socks that were hand washed and never sent to a hospital laundry!
So every time you buy new frilly socks for your beautiful daughters you’ll know why I do what I do.
Posted in Health | 1 Comment