Setting up a PDA Support Group
Many people find that talking with others who are ‘in the same boat’ is the best form of support – the PDA Society itself started out as a parent contact group after all!
There are already many groups around the country and many more on Facebook (please see Resources for details). We’re often asked how people can go about setting up their own local PDA support group. The PDA Society doesn’t have a formal programme for this but can support anyone who wants to set up their own local group by providing guidance, leaflets and a platform for promotion.
Hilary Harvey who set up The South Bucks PDA Support Group has put together this helpful guide for us. If you would like additional information on her group please get in touch with Hilary.
Running a support group can be a very rewarding experience, however, if you’re not careful it can also take over your life! Before starting out you should carefully consider a number of aspects and listed below is a starting point to help with this. Please genuinely consider how much time you have and if necessary set personal boundaries so you don’t over commit yourself, remember your family needs you too.
It is important for you to know and have ideas about how you will support the people in your group both with relevant information and with their emotional needs. Also, consider how you will cope with any negative feedback or people walking away. For many people, a good support group is actually a life-line so if you do decide to go ahead, please also consider how others will be affected if you are no longer personally able to keep this going and no-one is able to take over. Support groups are long-term commitments!
Points to consider when setting up a support group:
1) What other groups operate in your area: could you work together or do you want to set up a brand new group? Consider how other groups run and what they offer.
2) Decide on who you want to offer help to children or adults with PDA, parents, carers, siblings, other family members, professionals …
3) Which location or region would you like to work in: your home town, county, other?
4) How do you envisage the group working: formal meeting with speakers and social time, chatting informally over coffee, family events, training, forwarding of local/national information, asking members for information to help others, etc?
5) How frequently do you envisage meeting, are there any preferred days and times?
6) Consider where your meetings will take place and if there will be any costs? You may want to consider a ‘free’ venue to begin with ie. a café, a room in a local pub or a free meeting space, perhaps a community hub if you have one. Ideally, the venue will also offer free parking and have easy access to public transport and for those with disabilities. If you’re looking for a bigger, private meeting room you may need to consider whether you seek and apply for funding or approach somewhere for support.
7) Do you know anyone who would like to help or support you? How much time do you realistically have to make this work? Is your family/partner fully supportive of this new venture?
8) How will you advertise the group: email, website, Facebook, Twitter, letter, word of mouth? Will you use your own name or something different?
9) Where will you advertise? Options include: The PDA Society, local NAS Branch, local offer, SENDias, community paediatric team, CAMHS, GP, family resilience service, schools, specialist teachers, other support groups that are not specific to PDA, local special needs play centres, libraries, etc.
10) Test the water. Write and send an invitation to your intended audience (via the places suggested above or to others who you are in contact with), offering an outline of what you’d like to do and asking for people to contact you if they are interested. Remember not to offer too much personal information at this stage for your own personal safety. You could consider something on these lines as an example for a parent:
Hi, I am a [Mum/Dad] who lives near [town] with a [age] year old [daughter/son] who has been diagnosed with PDA, part of the autism spectrum. I would like to meet other families who have children with PDA or suspected PDA and so I’m wondering if there are any [region] parents, guardians or professionals living or working with children with PDA who might like to get together to share experiences & offer support to each other. I’m happy to organise a coffee morning or evening depending on everyone’s preferences just let me know if you would be interested by replying to the email address below: [email]. I look forward to hearing from you.
11) When replies are received, ask for feedback on preferred meeting options ie: day of the week, morning/afternoon/evening, venue ideas etc. and select the ‘best fit’ of the majority to proceed with. Also decide if you want to ask for more information (eg. why they are interested and what their connection is to PDA?), where they heard about this new venture, location in relation to you, etc. However, do remember to follow current data protection regulations and GDPR with regards to any information that you keep.
12) Remember to maintain confidentiality between respondents unless you agree to openly share personal details first. Consider forwarding all emails using a blind-copy distribution list and set up a separate list for those who are happy to openly share details. If you decide to use Facebook you may want to set up a private group, but do ensure you have time to moderate this effectively. Also, remember to follow the data protection regulations.
13) Once you have received feedback, decide where to hold your first meeting: can people arrive via public transport, is there car parking, do people need to pay, will refreshments be offered free of charge, will you ask for donations or can they be purchased, is the venue an appropriate size and suitable for people who may have PDA/Autism/other disabilities themselves, do you need to book or agree this in advance with the establishment chosen, etc?
14) The PDA Society can forward leaflets about PDA for distribution at meetings but please do order these well in advance of when they are needed. The PDA Society will also promote your group for you via their social media feeds.
15) Before meeting new people, always consider your own personal safety: tell someone you trust when and where you’re due to meet so they can contact you later or check you’re ok during the event if preferred, alternatively ask a friend to go with you.
16) Don’t forget to forward attendees as much information as you can in advance about the venue, timings, meeting format, etc. During your first few sessions also remember to ask others what they would like from the group and how often they would like to meet or be contacted. If all goes well, you can then formally agree on a name for your new group (if you haven’t already) and actively publicise this going forward with future meeting dates.
17) Finally, please remember to e-mail the PDA Society to have your group added to the support group list or for any other questions you may have.