An exploration of the UK unpaid carer's world

Updating the Herefordshire Autism Strategy   2014 - 2017                                         hidden page   see  - B - emails 


Update 22 Feb  - at 7

and under 11 priorities revised  item 6

------------------------------------

Predicting future demand for adult services

A paper from July 2013 by Aubrey Baillie, Higher Assistant Psychologist with the Adult

Learning Disability Service in Herefordshire, estimated that there are probably around

180 adults with some form of autism in the county who may need a service at some

point but who have yet to access one. 


page 16 here      


What has been done since 2013 to help?  What about those without Learning Disability?  


 Table 6; 

Locality of pupils with Autism- primary and secondary need (based on home postcode) 

 Grand Total 124            Autism as a primary need  43                     Autism as a secondary  need  43


 p 17


See also 2.2.2.3   why not add opportunites? 

--------------------------------------------------

Thanks V re HCS letter


and this.  Herefordshire Adult Autism Care Pathway


Update 21 Feb


11 priorities


Priority

Description

Key words

1

Service provider awareness

Increasing awareness and understanding for those who provide services to people on the autism spectrum

Awareness

2

Improved identification and diagnosis of autism, leading to assessment of needs for relevant services and improved co-ordination of care

Diagnosis

3

Improved planning in relation to the provision of services to people on the autism spectrum as they move from being children to adults

Transitions

4

Local planning and leadership in relation to the provision of services for adults and children with autism

Council planning

5

Support for parents, families and carers

Carers

6

Appropriate support for people with autism in criminal justice system

Justice

7

Getting the right housing and housing related support for those with ASD.

Update 22 Feb  - combine 7 & 8 under 

Economic and Social wellbeing  per JG

Housing

8

Helping people with autism into employment and training including Further Education

Further Education

9

Developing Educational Provision for children and young people with autism

Childrens Education

10

Community Safety and dealing with Hate Crime

Safety

11

Health – yet to be defined

Health 



11 priorities revised



Priority

Description 

1

Service provider awareness

Increasing awareness and understanding for those who provide services to people on the autism spectrum

 

2

Diagnosis

Improved identification and diagnosis of autism, leading to assessment of needs for relevant services and improved co-ordination of care

3

Planning

  1. Improved planning  of services to people on the autism spectrum  in transition from being children to adulthood
  2. Local planning and leadership within the provision of services for adults and children with autism
or

Within the provision of services for adults and children with autism there will be:
  1. Improved planning  of services
  2. Local planning and leadership


 

4

 Support

  1. For parents, families and carers
  2. Helping people with autism into employment and training including Further Education
  3. For people with autism caught within the criminal justice system
  4. Arranging the right housing and housing-related support for those with ASD

5

Education of young people

Developing educational provision for children and young people with autism 


 

Community Safety and dealing with Hate Crime

See 7 above re Update 22 Feb


Update 22 Feb for this item:


Helping people with autism live safe independent lives

“We’ve already begun to address some of the aims in the strategy:  we’re working very closely with people who live with autism, their carers and all partner organisations to see how we can bring about some of the improvements we know are required.”


That was in 2014 so what progress?  source

some - why not most or all?


Note the present tense - we’re working very closely


7

Health – yet to be defined

  1. Health mentioned 44 times

 

8

 

9

 

10

 

11

 



----------------------------------------------------------------------------------------------------------------

. . . the working group agreed that the principal aims of this strategy would be; 


 To work with providers of health and social care in relation to reasonable adjustments for service delivery for people on the autism spectrum 


 To work with the local communities to raise awareness of autism 


 To ensure that autism is included as a category on client information systems for social care 


 To work within current resources in light of the financial climate to implement the local strategy


  To raise awareness to ensure families and carers of people with autism are aware of their rights and services available

p 20


The central issue of my analysis is:


The updating of the three year old strategy needs to inform readers that these and other aims have been achieved.

That intentions are under frequent review in terms of practical outcomes.



A new item here is


Handling information and managing the process


 Only filling in firms ((( forms ))) once - Not repeating data input – this is depressing and

distressing (to be constantly reminded) - Data - Collect once – use many times

 There needs to be more detailed handover from one expert to another. Often new

expert starts off with a blank sheet and has to go from the beginning. Important

facts etc get lost on the way

 More and better consistency in record keeping – especially at transitions

 There is a lack of clarity / co-ordination in transitions


Page 22


 Professionals seem to work in isolation and there is poor communication between

them. When parents meet new professionals they come in ‘cold’ and they need to

start from scratch, going over everything again

 Better communication between services – public service areas to talk to one

another and share information


The "any-carer  problem". 


If the updated strategy does not show improvements, what is its point?


----------------------------------------------------------------------------------------------------------------


The item at


2.2.2.3   why not add opportunites? 

now carries a quotation beginning:

The autism steering group

and 

The IQ of high-function autism people is not always at question.

closes the update.


End of Update 21 Feb


-------------------------------------------------------------



Preamble

The following is it.

Page under construction.


1       Dear V   (link to this page sent on 19 Feb.) 

  1. Thank you for my being able to attend on Friday.

  2. As all in our group know well, J's list (Table 1 below) comprised nine topics from page 3  here.  

  3. Haven't found the right email which sent the other five topics discussed on Friday.

  4.  As you know, all this is new to me and my interpretations won't always concord with the party line.

  5. To me, updating = pruning the dead wood and planting new growth.  I don't know enough to wield secateurs.

  6. Before I progress to what we are doing, I am gathering facts etc.  Please advise re E & O E.

  7. Thursday, 6 February 2014 - A new autism agenda in Herefordshire here.

  8. The reason for this online presentation is that emails full of long URLs and other complications are not the best medium.  Is my ASD hard at work and is it justified in the present situation? 

  9. The present strategy is full of modals like should plus future-tense such as will this and will that.  Our proposal must (another modal, I'm afraid), change these to the present tense.  After all, if some have ridden since 2014, why have they not arrived?

  10. "should" is  included 17 times, "will" 38 times, "might" 12 times.  "Must", however, only twice also using Control F.  More shown on the poster.   

  11.  "Action" is used 16 times.  

  12. "This strategy aims to ensure that: ..." page 25 here.  Joe Soap might read  " It is fundamental that all staff providing services in the community have access to training and support to increase their awareness and understanding of autism", and think/ask  "If these abso basics have ridden since 2014, why have they not arrived?"

  13. The doc invites similar thought as anyone progresse.  A doc such as this is fine for professionals.  Will there be a user-friendly version?  I had made that incorrect assumption when I spoke about Awareness being linked to Diagnosis, as you will see later.

  14. Autistic adults - how are we to reconcile "There is no provision." which answered my question at the last meeting, and all the wonderful modals in the doc?

  15. "Est. no. of adults with an ASC in Herefordshire who might also require a service." is 183.  page 32 here.

  16. 8a and 9 in the list discussed (Table 1) are the new opportunity for action words but modals are the problem. 

  17.  "Adult" appears 103 times in the doc.  Child/ren  107 times

  18. I asked J about the pathway and he is finding out progress via the CCG.

  19. Carers said there was not always a clear, consistent pathway or referral process - p 19

  20. This strategy aims to ensure that;  diagnostic assessments are undertaken by appropriately qualified professionals trained in using valid assessment methods  the NICE diagnostic pathway on autism is used in assessing needs - p 26     ---  Who checks to see if progress has been made?

  21. This strategy aims to ensure that;  we  develop an integrated care pathway for people on the autism spectrum p  26               ---  Who checks to see if progress has been made?


2        Terms of Reference

2.1      The starting point
  1. • To undertake and participate in a needs assessment
  2. • To discuss current service provision and strengths and weaknesses of the provisions
  3. • To identify any gaps in service and needs
  4. • To discuss and contribute to service user, carer and provider consultation
  5. • To review and contribute any best practice
  6. • To input actions from the strategy into service areas.

2.2       Preliminary evaluation  

Caveat - over to the readers: it is all new to me.  One purpose of all this is my aim to understand the strategy.

2.2.1   To undertake and participate in a needs assessment     -   used 6 times in the doc
  1. Can we assume this has been achieved?
  2. What is the present participation?
  3. And the future?
     2.2.1 A)  needs assessment     -   used 6 times in the doc
  1. Developing links between the autism strategy and other strategies, for example, the Carers’ Strategy and the Joint Strategic Needs Assessment (JSNA), also known as ‘Understanding Herefordshire’.  p 6

  2. Provide or commission needs assessments for children and adults on the autism spectrum  p 7

  3. Ensure that autism continues to be included within the scope of the Joint Strategic Needs Assessment – Understanding Herefordshire  - p 9

  4.  JSNA – Joint Strategic Needs Assessment. Also known as ‘Understanding Herefordshire’ – see http://factsandfigures.herefordshire.gov.uk/1922.aspx#end  p 11

  5.   we ensure that Autism is included within the Joint Strategy Needs Assessment (Understanding Herefordshire) D.5.   p 27

  6.  Terms of Reference • To undertake and participate in a needs assessment  p 33

2.2.1.B)   Evaluation

2.2.1 B.1  We now look at verbs:

  1. Developing links between the autism strategy and other strategies, for example, the Carers’ Strategy and the Joint Strategic Needs Assessment (JSNA), also known as ‘Understanding Herefordshire’.  p 6

  2. Provide or commission needs assessments for children and adults on the autism spectrum  p 7

  3. Ensure that autism continues to be included within the scope of the Joint Strategic Needs Assessment – Understanding Herefordshire  - p 9 of the doc we are working on.

  4.  JSNA – Joint Strategic Needs Assessment. Also known as ‘Understanding Herefordshire’ – see http://factsandfigures.herefordshire.gov.uk/1922.aspx#end  p 11 of the doc we are working on.

  5.   we ensure that Autism is included within the Joint Strategy Needs Assessment (Understanding Herefordshire  here)  D.5.   p 27 of the doc we are working on.
  6. Terms of Reference • To undertake and participate in a needs assessment  p 33

2.2.1. B.2   Evaluation
  1. Within our mission to use action words, are these passive words in disguise?

  2. Does our mission include pointing out what/what has not been achieved? 


2.2.2   To discuss current service provision and strengths and weaknesses of the provisions


2.2.2.1    strengths


2.2.2.2   weaknesses


2.2.2.3   why not add opportunites? 

The autism steering group, along with lead commissioners, will provide
overall direction which will include ensuring that there is a reviewing and monitoring
system in place. It is also recommended that the autism steering group include
representatives from the third sector, voluntary groups, service users, carers, health
professionals and others who have a direct interest in the successful implementation
of this strategy.  p 9


Inclusion of person/s who are service users (and others for whom services are  non-existent) on the most senior committee?  The IQ of high-function autism people is not always at question.

Update 22 Feb

6.5. Support for parents, families and carers;

Working with national organisations such as the National Autistic Society together
with local groups, the strategy will seek to provide those on the autism spectrum,
carers and families with sound and reliable information to empower them to take
greater control of the services they receive.

p 8                                   will seek to        and now?


How many carers and family members, even sufferers, are on any committee?  Assumed to be none. How is their voice heard?   

empower them to take  greater control of the services they receive.    ???????????????????

end of update


2.2.2.4                            threats?  £ the main factor.

2.2.2.5                            anything more?



2.2.3   To identify any gaps in service and needs
  1. Service
  2. Needs



2.2.4   To discuss and contribute to service user, carer and provider consultation
  1. Service user
  2. Carer
  3. Provider




2.2.5   To review and contribute any best practice
  1. Review
  2. Contribute



2.2.6   To input actions from the strategy into service areas.
  1. We cannot rewrite anything without knowing if there is any result.  

  2. I assume that the present doc is not the source of answers.  I sit here as carer while my very frail wife who has FTD is watching a monkey TV prog for the 12th time in a few days, (no wonder she sleeps a lot).  I am unable to use a fine toothcomb on the doc.

> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >

                                          

Contents

  1. Table 1    Current priorities
  2. Table  2   The council and the CCG  responsibility
  3. Table  3   Current priorities - more detail
  4. Appendix G - Task Group; Terms of Reference and Membership
  5. Autism poster



1    Table 1    Current priorities as presented on Friday 17 Feb.  Five more are missing


These are numbered and do/do not (?) reflect order of priority NOW.  

 

Priority

Description

Key words

1

Increasing awareness and understanding for those who provide services to people on the autism spectrum

Awareness

2

Improved identification and diagnosis of autism, leading to assessment of needs for relevant services and improved co-ordination of care

diagnosis mentioned 33 times    identification x 9  

Diagnosis

3

Improved planning in relation to the provision of services to people on the autism spectrum as they move from being children to adults

Transitions

4

Local planning and leadership in relation to the provision of services for adults and children with autism

Council planning

5

Support for parents ((( x 42))), families  ((( x 22)))   and carers ((( carer x 39)))

Carers

6

Appropriate support for people with autism in criminal justice system

criminal justice mentioned nine times


D.6. Appropriate support for people with ASD in criminal justice system 

The national strategy recommends that pathways should be developed through the criminal justice system for people on the autism spectrum as this will help identify key players locally who may be required to work alongside criminal justice staff. Young people who are picked up by the Youth Offending Service are assessed using the ASSET tool at the start of their intervention. Those with SEN, physical health or emotional and mental health issues, including autism, are identified through this assessment and are referred to the YOS Health Worker to refer on to specialist health services where appropriate. 

p 28                     assessed     referred  =   rare present-tense action words


The Bradley Review, commissioned by the Secretary of State for Justice in 2007,

was broadly mandated to examine the extent to which offenders with mental

health problems or learning disability can be diverted to other areas and the

barriers to such diversions. The Review also made a number of policy

recommendations to the government including joined up working by various

government departments and setting up diversion arrangements.

p 12

Justice

7

Getting the right housing and housing related support for those with ASD.

housing and housing related support mentioned three times

housing - x 25

for those with ASD - not checked   - ASD = x 21

Housing

8

Helping people with autism into employment and training including Further Education


there is a lack of good information available particularly the availability of support and accessing further education  p 19

whose job is to put this right?

Further Education

8a

Developing Educational Provision for children and young people with autism - This is a new priority identified since 2014

Helping people on the autism spectrum into employment, training and Further Education is an existing  Strategic priority - pp 3, 8


Childrens Education

9

Community Safety and dealing with Hate Crime - This is a new priority identified since 2014

Herefordshire Community Safety Strategic Plan  2014 – 2017 here   Hate crime mentioned six times.  police x 42

Community cohesion here



Safety


source of middle column to 8 and developed on pp  8 & 25  here 



2    Table 2   The council and the CCG have a responsibility to:


  Provide or commission diagnostic services for children and adults with on the autism spectrum 

 Provide or commission services to identify children and adults on the autism spectrum 

 Provide or commission needs assessments for children and adults on the autism spectrum 

 Plan appropriate services for children and adults on the autism spectrum, as well as planning for young people in transition from Children’s to Adult services 

 Plan training for staff that provide services to children and adults on the autism spectrum 

 Have local arrangements for leaders

Page 7 


Going back to            Five more are missing       are they from this list?



3    Table  3   Current priorities - more detail


Herefordshire’s strategic themes – the headlines   - blue text is mine    green text is a supplementary quotation


6.1. Increasing awareness and understanding for those who provide services to people on the autism spectrum;

  This strategy aims to ensure that all people who provide services across all sectors are better aware of the needs of those with ASD in order to provide better services 


Increasing awareness and understanding for those who consume services who will be (more?) inclined to request diagnosis.

In my case, I had no awareness of my condition until diagnosed by SL.  At 75 I have realised that problems started in 1980 (aged 39).


6.2. Improved identification and diagnosis of autism in children and adults, leading to assessment of needs for relevant services; 

This strategy aims to ensure that the diagnosis process is as efficient and effective as possible leading to timely diagnosis 


6.3. Improved planning in relation to the provision of services to people on the autism spectrum as they move from being children to adults; 

This strategy aims to ensure that the process of transition from children’s to adults’ services is as smooth and effective as possible 


The implementation plan for this strategy is an on-going working document and is available separately on request.

Is this available to us?  Could be vital to numerous aspects of our work.



6.4. Local planning and leadership in relation to the provision of services for adults and children on the autism spectrum; 

This strategy aims to ensure that the council, working with its partners, provides effective leadership and guidance on the provision of services especially through the use of personalised budgets 


6.5. Support for parents, families and carers; 

Working with national organisations such as the National Autistic Society together with local groups, the strategy will seek to provide those on the autism spectrum, carers and families with sound and reliable information to empower them to take greater control of the services they receive 


6.6. Appropriate support for people on the autism spectrum in criminal justice system; 

This strategy aims to ensure that those on the autism spectrum receive fair and equitable treatment within the criminal justice system 


6.7. Getting the right housing and housing related support for those on the autism spectrum; 

This strategy aims to ensure that people on the autism spectrum are treated fairly and equitably within the housing system 


6.8. Helping people on the autism spectrum into employment, training and further education; 

This strategy aims to ensure that people on the autism spectrum are treated fairly and equitable in the labour and training markets 

Page 8   


---------------------------------------------------

Go now to Appendix D – Herefordshire’s Strategic Themes where there is further info on p25 here.


D.1. Increasing awareness and understanding for those who provide services to people with autism It is fundamental that all staff providing services in the community have access to training and support to increase their awareness and understanding of autism. This in turn will help to address gaps in staff knowledge and understanding of autism.


Surely, anyone could expect that all staff providing services in the community have access to training now.  

A - If the point made was added very recently, it ought to say so.  ie not in 2014.


My main question is "Do we need to analyse each point and comment/recommend?".





4    Appendix G - Task Group; Terms of Reference and Membership


4.1  Terms of Reference

  1. • To undertake and participate in a needs assessment
  2. • To discuss current service provision and strengths and weaknesses of the provisions
  3. • To identify any gaps in service and needs
  4. • To discuss and contribute to service user, carer and provider consultation
  5. • To review and contribute any best practice
  6. • To input actions from the strategy into service areas.

Do we need to comment on achievements and lack of, and recommend changes? 


4.2  The Executive Summary says this:

  1. The strategy does not identify funding requirements for implementing this strategy as there is no additional funding available currently. However, as this is a three year strategy and it is hoped that opportunities will arise to allow for improved use of existing resources or for new investment to be sought.

  2. Surely, the updated Strategy should/must convert the vague it is hoped to something better.



4.3  Membership

  1. • Elaine Cook-Tippins, Neuro-Developmental Team co-ordinator
  2. • Annabel Gatherer, Speech and Language therapist
  3. • Steve Gordon, Operations Manager
  4. • John Gorman, Commissioning Support Officer Herefordshire Council
  5. • Adrian Griffiths, Head of Commercial Development Herefordshire NHS CCG
  6. • Mark Hemming, Locality Director, Herefordshire
  7. • Dr. Sabah Jaafar, Consultant Community Paediatrician
  8. • Steve Laycock, Additional Needs Senior Casework Manager
  9. • Jane Lewis, Early Years Language and Communication Teacher
  10. • Billy McAlinden, Operational Manager (Community Services) Learning Disability Team
  11. • Sophie Nunn, Children with Disabilities Team Leader
  12. • Mark O'Donnell, Citizen Engagement Worker
  13. • Amy Pitt, Commissioning Officer Herefordshire Council
  14. • Sean Slater, Head of Learning Disability Psychology
  15. • Carol Soble, Specialist Teacher for Complex Communication Difficulties

Any of these in our main group  apart from John?   Why is 4.3.6 not billed as being within 2g?

4.3.3 Manager of what?  Nothing here apart from a link to the Strategy pdf.  

Other entries also vague.



5   Autism poster here  optional  provisional 


____________________________________________________________


noon 20 Feb - work stops - now lunch prep - after = return to my battle to be involved in the operation and management (of my project) with the church  here  - it trigured my aspie diagnosis

   


pagetop    Updating the Herefordshire Autism Strategy   2014 - 2017    here

                   Strategy here

                   Herefordshire Adult Autism Care Pathway here

                   Autism poster here

                   National Autism Strategy ‘Fulfilling and Rewarding Lives’ (2010). here

                   Personal Social Services User Experience Survey of Carers 2014 Version 1.1
                   Herefordshire Council Research Team September 2105 here  autism and asperger not mentioned

                   Funding for children with special educational needs or disability here

                   NAS Autism profiles and diagnostic criteria here and diagnosis here

                           Autism Strategy statutory guidance here 

                   6 February 2014 - A new autism agenda in Herefordshire here

                   Herefordshire Community Safety Strategic Plan  2014 – 2017 here

                              Community cohesion here

                   AQ-10  Autism Spectrum Quotient (AQ) here  (I score 4)

                   Physical conditions associated with autistic spectrum disorders here   (optional)