1. Client and Worker Resourcefulness in Face of the System

2. Introduction IFSO, The disability system & cases with complex needs Family Strengths- Clients continually amaze us with how they adapt to major barriers in the system Targeted surveys How do families overcome “stuckness”, frustration and despair? What do they see as the ideal system?

3. Client Strategies Belief in self Self care Get information Manage Information Get help Decision Making Advocacy Lateral thinking

4. Belief in Self “ trust yourself, believe in yourself, you are not a bad parent, you are making the best of a very bad situation. You are a good parent even if your hair is a mess and you look like hell.” “ I have learnt to distinguish between the child I have at home and the child in the reports…”

5. Self care Exercise, go for a walk Use respite Pace yourself- you have a long way to go Stick to what works

6. Information “I Learn as much as I can about my child’s disability to PROVE I need the service” Network Get in touch with the right authorities Keep asking questions Learn to filter advice Organise files at home

7. Getting Help Get a good case worker “Cut hostile people out of your life immediately…don’t let them wreck the joint before they go” Create a support system Be honest about desperation levels “If you put on a coat of armour no one is going to help”

8. Decision Making Pursue only things you have 80% chance of obtaining “ditch the rest, by the time you get it you won’t need it and have learnt to do without it.” Filter Information “Beware of fancy advertising. All that people say their service does doesn’t always turn out in reality. All that glitters is not gold - or don’t believe everything you read on the internet”. Take your time

9. Advocacy tactics Persevere and persist: You are only answerable to your own child “..you need to look your child in the eye and say I did my best” What wouldn’t you do for your child? Read the people you are dealing with Win people over “ you cannot change people, they either get it or they don’t. No amount of argument will win someone over. Take cookies, not lawyers to meetings.” If all else fails keep an onion in your hanky The power of letters, writing things down

10. Advocacy tactics Cont.. Play the game “ obtaining services is like a game- learn the rules and choose your weapons carefully. Most of your weapons will be emotional ones: use your words and your feelings carefully.” “Use your child’s disability label to your own discretion. No one will see you without a label.” The more severe the diagnosis, the more support available.

11. Issues FacedStrategies UsedIdeal System Lack of knowledge Obtain information National data base, resource booklet, Communication and documentation Filing, notes, writing letters Clear application process, centralised funding Feelings of helplessness & frustration Believing in self, getting help, decision making, advocacy More resources

12. Worker Strategies Begin with the end in mind Networking Be a clear communicator Act sooner than later Don’t Give Up Enjoy the challenge

13. Worker Strategies a) Begin with the end in mind..ie be guided by clients goals; “Instead of trying to meet the families needs, in terms of what they are eligible for?, ask What do you need? and you might have to be creative to go about getting that need met.” b) Don’t Give up and try a new way “There are different ways to fight not just being aggressive, think and reflect with people and take a different approach.”

14. c) Networking At every possibility Gentle advocacy ie “Appeal to the humanity of that service …I’m not expecting you to be able to do this but….” Brainstorming with other services about what they would do or recommend. Working in a partnership together ie having a 2- way relationship Compliment and acknowledge what a service does well

15. d) Be a Clear Communicator Discuss boundaries and expectations of services for clients- be a service that is open about your criteria and processes Explain the system- “ like waiting lists and the process of getting linked in. See what support they have to manage the situation in the meantime.” e) Enjoy the challenge develop confidence and competence in dealing with complex situations

16. The Ideal Service Client’s Views Early allocation of a case worker Funds allocated to child Clear application process More resources Information Worker’s Views Fast assessment More flexibility Needs specified clearly Utilise Volunteers Group work ST and LT solutions

17. Differences Between Clients and Workers Not an extensive list of strategies – ones that stood out as useful ones. Workers are in a different place – proactive from initial contact whereas clients have to find a way into the system Workers have more resources & training yet clients and workers can be just as frustrated by the system and both have to learn new strategies to overcome barriers.

18. Conclusion How do we help each other to do these? How can we be assured that our communication with clients is clear and understood? How do we link parents together to share their experiences and information ? Comments and Questions?

19. Intensive Family Support Options Contact details: Don Coles – Clinical Co-ordinator Ph 02 9972 8177 dcoles@tscnsw.org.au Pepi McIntosh – Family Therapist Ph 02 9972 8175 pmcintosh@tscnsw.org.au Christine Castle – Family Therapist Ph 02 9972 8163 ccastle@tscnsw.org.au

20. The Questionnaire 1.Can you tell us about your experience of negotiating with services? 2.What are the sorts of approaches you’ve found most useful? Ie What has helped you? Worked for you? 3.Which approaches do you feel the most comfortable with? 4.How do you make a decision about which approach to take? 5.What feelings arise when you are faced with barriers? 6.What do you do to cope with the feelings that come with trying to get your needs met within the system? 7.Which approach is the least effective for you? 8.What networks are you using? 9.If there was an ideal service, what characteristics would be the most crucial for meeting your needs? 10. What would you recommend to other parents to help them negotiate the system (services) more effectively?