Terms of reference or rules and purpose of the Partnership Board

The Autism Partnership Board is a group including autistic adults, unpaid carers of autistic people, members of their support network, and representatives from statutory and community and voluntary organisations. The Autism Partnership Board will work together to improve the lives of autistic people, unpaid carers and members of their support network in Brighton & Hove.  

The Autism Partnership Board will have an approach of partnership and collaboration. This is defined in Appendix 1. 

The Autism Partnership Board (or ‘the Board’) aims to:  

• improve the experiences and life chances of autistic people in Brighton & Hove. 
• make Brighton & Hove an autism friendly city. 
• listen to the widest range of views of autistic people, unpaid carers and members of their support network to inform the Board’s work

It also aims to:

• find out where gaps in services are for autistic people, their unpaid carers and members of their support network. This will inform Brighton & Hove’s Joint Strategic Needs Assessment and the development of future services
• tell statutory organisations in Brighton & Hove when they are not doing what the law and guidance says they should do when working with autistic people, their unpaid carers and members of their support network. Statutory organisations include Brighton & Hove City Council, National Health Service (NHS) Sussex Integrated Care Board and Sussex Police. Laws and guidance include the Autism Act 2009, the Department of Health National Autism Strategy and statutory guidance, the Care Act 2014, the Children and Families Act 2014 and local strategies
• develop the Brighton & Hove Autism Strategy. The Brighton & Hove Autism Strategy is a plan for how we can improve the lives of autistic people, their unpaid carers and members of their support network, in Brighton and Hove. The Autism Partnership Board will develop workstreams and action plans associated with the Brighton & Hove Autism Strategy and monitor how the strategy is being implemented in practice
• monitor the effectiveness of services for autistic people, their unpaid carers and members of their support network.
• ensure that staff working in services at all levels have appropriate training about autism
• raise the profile of autistic people and improve understanding of their needs across services. 
• raise issues and concerns affecting autistic communities and work together to find solutions. To make recommendations on plans and strategies that affect autistic people, their unpaid carers and members of their support network.  

The Autism Partnership Board will not duplicate actions and plans from the following strategies: 

• Special Educational Needs and Disability Strategy which relates to autistic children and young people. 
• the Adult Learning Disability Strategy 
• City Employment and Skills Recovery Plan 

The Board will collaborate and work in partnership with others where there are links with other strategies.  

The Autism Partnership Board cannot tell the NHS or the council how to spend money, although any requests will be considered and reasons given for any decisions made.

Board members are expected to:  

• listen to what everyone has to say, especially the views of autistic people, unpaid carers and members of their support network
• share information with their group and gather information and views from their group to share with the board. Tell the board about things that are happening in other strategies so the work of the board does not duplicate with other groups and work. 
•  attend meetings whenever possible. If you cannot come to a meeting members should send an update or someone in their place. The member should explain their role and give information to the person attending on their behalf, so they are prepared
•  challenge views respectfully if they disagree with others
• respect confidentiality. If information is confidential members will be told not to share it.  
• complete agreed actions or talk to the right people to make sure their actions happen
• respect that the board cannot make decisions that involve or conflict with other strategies 
• be inclusive of all members and challenge discrimination  
• tell the Board if they have any conflicts of interest. A conflict of interest is when someone might be personally affected by a decision made by the Board

The Autism Partnership Board will have 2 Co-chairs. One Co-chair will be a nominated representative from the autistic community in Brighton & Hove. The other co-chair will be the Assistant Director for Commissioning and Partnerships from the Housing, Care and Wellbeing directorate in the Council.   If the Assistant Director for Commissioning and Partnerships  cannot come to the meeting, then a senior officer of the Council or the NHS will be the co-chair for that meeting.    

The Co-chairs will be responsible for making sure: 

• the agenda is followed 
• everyone can share their views 
• meetings are inclusive and accessible 
• actions are assigned to the relevant groups and/or individuals 

The access arrangements of the Board will be regularly reviewed at each meeting. 

The Autism Partnership Board aims to represent the diversity of autistic people, and their unpaid carers, in Brighton & Hove. 

The Autism Partnership Board will report to the Brighton & Hove Health and Wellbeing Board and the SEND partnership board at least once a year. Statutory members (like Brighton & Hove City Council and the NHS) will report to their management to make sure decisions in the Autism Strategy happen in practice.  

Board members aim to agree decisions by consensus. Consensus means everyone accepts the decision even if it is not their first choice. If board members cannot agree a decision, then the co-chairs will make the final decision.  

The Board will meet at least 4 times a year. Meeting dates for the year will be shared in advance. Dates, agendas, and minutes of all meetings of the board shall be published on the Brighton & Hove City Council website. Most meetings will be hybrid which means some people will attend in person and some people will attend online.  

Board members can ask for talking points to be added to the agenda up to 4 weeks before the meeting. The agenda will then be sent to Board members 2 weeks before the meeting.  

Minutes and agreed actions will be written at each meeting. Draft minutes will be sent out within 2 weeks after the meeting. Minutes will be agreed at the next Autism Partnership Board meeting. 

Workstreams have been developed from the Autism Strategy. Priority actions will be identified for each workstream. Some workstreams will have groups where members will work together to implement the priority actions; some workstreams will link into other strategies and groups where work on the priority actions is already happening. Priority actions for the workstreams will be reviewed at least once a year.

These terms of reference will be reviewed annually.  

What partnership and collaboration means

The Autism Partnership Board will have an approach of partnership and collaboration.

This is defined as: 

• Citizens and staff working together to identify issues and find shared solutions 
• Recognising, valuing and promoting the knowledge, skills and expertise of autistic people, their unpaid carers and members of their support network
• Board members sharing decision making wherever possible. Being honest and open when shared decision making is not possible
• Valuing and respecting all members
• Everyone having the same opportunity to take part in an activity in a way that suits them best

The Autism Partnership Board will have a whole family approach which means that the Board will consider the needs of everyone in the autistic person’s family and/or support network.  

What language we use

The language we use when we talk about people is very important and it communicates dignity and respect.  

Autistic people do not all have the same preferences for what words should be used when talking about them. It is best practice to ask an individual what language they want to be used when referring to them. However, this guidance is currently considered best practice when talking about autistic communities.

1. Use 

Autistic people or people on the autism spectrum.

Do not use 

People with autism.

Why? 

Not everyone agrees but increasingly and in general autistic people do not like ‘person-first’ language. This is because they see autism as part of who they are and not separate from their personhood.  

2. Use 

Autism or Autism spectrum.

Do not use 

ASD or Autism Spectrum Disorder or suffering from autism.

Why? 

Autism Spectrum Disorder is still an official diagnosis, however, disorder and ‘suffering’ are considered negative and medicalised language. A neurodiverse approach equally values all types of brains.  

3. Use 

Full words.

Do not use 

Abbreviations like LD and CYP or jargon.

Why? 

Using abbreviations can be thought to be disrespectful and inaccessible.  

4. Use 

Autistic people with a learning disability or autistic people without a learning disability.

Do not use 

High or low functioning.

Asperger’s syndrome.

Why? 

Some individuals may find terms such as ‘high functioning’ or ‘Asperger’s syndrome’ as meaningful ways to refer to themselves and this choice should be respected. However, ‘low functioning’ is a disrespectful (and often inaccurate) way to talk about people and ‘high functioning’ can dismiss the support needs of autistic people without a learning disability. 

Individuals are no longer diagnosed with Asperger’s in favour of a general autism diagnosis.  

5. Use 

A neurodivergent individual.

Do not use 

A neurodiverse individual.

Why? 

The neurodiversity movement promotes equally valuing all human minds and neurotypes. This contrasts with the medical model which has historically considered autism as a ‘disorder’. You cannot be a neurodiverse individual because it’s not possible to be ‘a diverse individual’. 

Neurodivergent means having a mind that functions in ways which diverges significantly from dominant societal standards of ‘normal’. Forms of neurodivergence include lifelong neurotypes such as autism, ADHD as well as acquired such as complex post traumatic stress disorder.  

6. Use 

Allistic or non-autistic people.

Do not use 

Neurotypical when you mean not autistic.

Why? 

Individuals can be neurodivergent but not autistic, for example being a non-autistic person with ADHD.