Building Circles of Support and Friendship. Down Syndrome Research Foundation, October 2017

Transcription

1 Building Circles of Support and Friendship Down Syndrome Research Foundation, October

2 Guidebook for Parents A Guidebook for Parents Building Circles of support and friendship The Hamilton Family Network 2

3 Our Safe Harbour 3

4 To be vulnerable How to live with that? Core Values to guide us. Our starting point grows from a deep understanding that the building of relationships with people who are vulnerable is a gift for us all. We are not just doing it for or to someone else, we are doing it for ourselves. This is the foundation from which we will build. - Jean Vanier 4

5 Friendship People with developmental disabilities are people of relationship 5

6 Hamilton Family Network Hope Belonging Purpose 6

7 Hamilton Family Network 7

8 Values More people More places More choices More respect More skills - John O Brien 8

9 What is a Circle? The key to a happy, healthy life is enjoying and maintaining the give and take, the power and love of friendship. When parents are asked what they most want for their children with disabilities, they almost unanimously answer: Friends 9

10 A Brain Trust The decision-making responsibilities are taken on and shared with the Circle members. Decisions are not being made with the same emotion that I, as a parent, would make them. This way, there is a structure in place that helps with all the challenges and problems that come up. We have a brain trust. - a parent 10

11 See People differently Social isolation Poverty No future planning Belonging, engaging in inclusion Contribution Informality in relationships 11

12 Vision Focus on deficits: no vision Focus on strengths Focus on outcomes for families and communities Hope Belonging Purpose 12

13 It s about the Person The fact is that the presence or absence of a disability doesn t predict quality of life. Like with all human beings, it is the supports, friends and relationships we have that do. And so regardless of abilities, a Circle becomes essential to quality of life. 13

14 Circle Exercise o Circle of intimacy (closest to you) o Circle of friendship (friends & relatives) o Circle of participation (within a group, regular activities) o Circle of exchange (where money is exchanged) 14

15 Should paid staff be included? Question: Do you want to foster a strong relationship with this person and become their friend? 15

16 Answer = Yes Welcome to the Circle! What next? Talk about how to manage the relationships in the circle and at work 16

17 Answer = No Staff member needs to reaffirm their role as a paid staff member and clarify their relationship with the person. What next? Paid staff input can be brought through consultation as circle guest at meetings 17

18 Parent/Family/ Primary Supporter Works closely with facilitator to: find people for the Circle, may be the asker provide background information to help everyone get to know the person better set up scheduling of meetings, refreshments, etc. brings forward important personal and family concerns provides direction, ongoing support, motivation 18

19 Role of the facilitator? Professional support, natural emergence Focus on goals, long-term vision Encourage others, be supportive Develop commitment & friendship Communicate with parents & focus person Excellent listener, positive person Able to foster rapport, keep meetings casual and fun 19

20 The Big Ask Who,What, When,Where,Why and How Why is asking important? What are you asking for? Who are you asking? Who does the asking? When do you ask? 20

21 Circle members I was very honoured to be asked. I thought it was a wonderful thing to do for her daughter. I felt that I could bring some other attributes to the Circle from my experience at work and my organizational skills. I felt very committed to helping out in any way. I made a personal commitment to be as open as I possibly could at the circle meetings.. I think a lot of the Circle people can say the same thing: I think we got more out of it, we learned lot more and I like to think I became a better mother,a better wife,and a better person, being a part of all this. 21

22 How to run a meeting Icebreaker Information Inspirational reading Purpose of the gathering Don t ask for commitment now I wanted to build a Circle of support around my son because both my husband and I are getting older and we both have medical problems and we wanted to make sure there were other people in our son s life down the road. The second, and maybe even as important, is the fact that our son only has one sibling almost the same age who is going to get old along with him. We just felt it was important for both brothers to have support around them. - A parent Choose the next date 22

23 Activities around Seasons Spring: Passover, Easter, melting snow, coming grass, leaves and flowers, Academy awards, march break, maple syrup, ground hog day Summer: Victoria Day weekend, Mother s Day, gardens, swimming, camping, cottage, sitting on the deck, going to the park, cottage, vacation, picnics Fall: Raking leaves, getting colder, Thanksgiving dinner, Grey Cup game, Halloween Winter: Chanukah, Christmas, Ramadan, Bodhi Day, hockey night, New Year s, snow, Valentine s Day, Family Day 23

24 Barriers What barriers currently impede the focus person s ability to develop relationships with others? What can I do to help the person overcome these barriers? 24

25 Opportunities Focus on strengths Circles are transforming over time A Circle is a collaboration, people working together, sowing seeds for tomorrow It s about the person, but also about the person in their family and community 25

26 Guiding Principles The basics: It s about the person It s about Person-directed planning Problem-solving and shared decision-making Being connected and engaged with community Building hope for the future 26

27 Relationships Establish and maintain Learn about person s hopes and dreams, goals and aspirations Build new relationships Keep a spirit of cooperation and collaboration People with developmental disabilities are people of relationship 27

28 Focus Person o My circle makes me feel really important and happy o I learn about things I can try to do o I am treated like a grownup o Everybody listens to me at my circle and I really like that o I have friends 28

29 Top Ten Tips 1. People are honoured to be asked 2. People, including those with severe special needs, can benefit from a Circle. 3. People don t really care about the setting or the food; they are there because they care about the person. 4. Circles can start with three or four people. 5. No one is paid to attend a Circle meeting. 29

30 Top Ten Tips cont d 6. The focus person is always present and supported to participate at Circle meetings. 7. Establish the family s values and hopes in the first meeting. 8. Have clear goals for the Circle to work on to stay focused and valuable. Don t have as a goal that you wish for the focus person to have a better life, but zero in on something more specific such as that he have an opportunity to work with animals. 9. Circles will ebb and flow through high and low points, just like life. 10. Circles won t change things overnight. They can be transforming over time. 30

31 Circle members The Circle restored my faith in the common good that people can do when there s a good intention behind the cause. I feel richer for being involved with all the other members. I am so grateful to know the focus person on a deeper level and feel very fortunate to be able to share experiences with other people who are committed to the person and the Circle. 31

32 Formalizing the Circle The small not-for-profit organization Who is on the board? Managing funding Hiring, firing, maintaining staff Voice and Advocate with/for focus person 32

33 How to form a board 5 members: President, treasurer Application Sample objects 33

34 Models Micro boards in B.C. Arohas in Ontario, Bloomfield family 34

35 Check List of Investments Power of Attorney ( You and your kids) Henson Trust ( Discretionary Trust) ODSP RDSP Individualized Funding : SSAH and Passport Circle included in your will A Good Everyday Life; An Ordinary Life is what we hope for our sons/daughters a parent 35

36 What s it all about It s not about the food. It s not about the place. It s about the person. 36