HOW MY AROHA WORKS FOR ME by Andrew Bloomfield
How my Aroha is important
Friends of Andrew Bloomfield (FAB) which we incorporated in early 2002 is a vital part of my life, both now and in the future.
We formed FAB when I already had many good things in my life--especially my own home and reliable support for my way of communicating so I had a big say in any decisions affecting me. But I was anxious about how my good life could continue after my parents die. My twin sister had died suddenly only four years earlier and I still felt devastated by losing her. In bad dreams I could imagine how seriously I would be affected when my parents die. It was clear I needed something like an Aroha because I have no relations in North America other than my parents.
A self-directed support corporation aka Microboard which we call an Aroha in Ontario seemed likely to help us. But other families also find the Aroha mechanism helpful. An Aroha is good for anyone! Family members including siblings usually are relieved that others are sharing the responsibilities. Aroha directors who may have taken up this role through caring deeply about the person's parents, come to feel a great deal of satisfaction. They get to like and speak up for the person whose Aroha they serve on. They feel reassured by getting to know and sharing their roles with other directors. They find the Aroha experience also helps them with supporting other relations.
As an incorporated entity, an Aroha has legal responsibilities and obligations. These are spelled out in legal language in the process of incorporation. As an Aroha cannot be a registered charity (it is for and about a single individual) its obligations are a bit simpler. The business and legal responsibilities are highly important and are detailed more below.
A: My Aroha friends are important for who they are, what they do now, and what they can do to support my good life into the future.
The most important qualifications for being director of my Aroha are: knowing me, listening to me, caring about what matters to me, and sharing time and interests with me. It is good for me to get to know people as individuals and in small groups. The various Aroha directors should have a strong sense of shared purpose in supporting my good whole life.
When I am getting to know a new person--someone who might provide paid support and especially someone who could become a trusted friend like a member of my Aroha--the best way to start the relationship is to join me on a walk with my dogs. I don't like to talk so much on the walk, just be together. Then it's good to have tea together at my home, perhaps sharing a board game. When we first meet, it's good to have someone along whom I already know until we have a good and easy relationship. Other people will have other good ways of getting to know new friends. It's most effective to start by building on strengths and what could be shared interests. If the new person asks questions of me, I should have someone to support my way of communicating. A new person might ask more questions by email, and I could comment and ask my own questions of that person.
Once people know me, we keep in touch about how my life is going--through monthly reports and newsletter by email. My new book is very helpful to show my present gifts and needs. (I asked the president of my Aroha to write the Foreword.) Of course my directors know how I express myself reliably--I hope they can actually support me but certainly they listen to and respect what I say.
We keep in touch with the Aroha directors' lives and families too. I am fortunate that the three non-family directors of my Aroha have been constant for the past ten years. (My parents and I are the other three directors of FAB.) They are of different ages--all younger than my parents and one younger than me--and have various skills, personalities and interests. I spend regular times with each of them and often their whole families. One of my directors has lived on the same farm for the past 20 years: I have met there with her for Supported Typing and for ten years worked with her daughter's horses and in the farm forest. The president of my Aroha is a professor in a neighbouring city: I have done copy-typing for him and we have had regular times of biking, hiking, and board games. My other non-family director used to be my tutor when I first set up my own house. When she married, she and her husband settled in my neighbourhood, and her husband is my running partner.
Aroha directors need to get along with each other and to have a strong sense of shared purpose around my good life. My FAB directors did not know each other so well when they first agreed to serve. I have hosted social events such as potluck lunches and dinners as well as a larger FAB dinner party and FAB garden party for 25 plus people also including other members of my circle of friends. Social events are not the easiest occasions for me, but I do like to see everyone being animated and happy. I love to be host and wanted the dinner party just to be fun. For part of the garden party, people could move around activity stations in my house and garden learn about and try out activities and interests that are important to me.
All I have said so far is a necessary basis for the formal responsibilities of an Aroha. The rapport and shared understanding are most important. If it's hard to actually get people together very often, email can help to keep in regular touch.
How do my Aroha directors help with all the objects of an Aroha?
For formal purposes, an Aroha is like any other not-for-profit corporation. It operates under a set of bylaws and complies with reporting requirements.
[See Section B in Creating a Home and Good Life of My Own]
The functions of an Aroha are to:
a) Support XX to understand the main factors that affect his life and well-being, to respond to the initiatives he expresses, and to ensure his needs and wishes are heeded…
My directors keep in touch with the ups and down, the challenges and opportunities, of my life. As I am quite expressive with Supported Typing, I can tell them what I am thinking and ask their help. They can send me questions and ideas of choices I might make and meet with me when I have independent communication support. I really want to make it possible for FAB directors to support my typing as well for at least short conversations.
b) Promote the support and respect of XX by workers and friends in his community who understand how he copes with severe disorders and who respect the alternative and augmentative ways in which he communicate…
I welcome any suggestions and connections that my FAB directors may make to increase acceptance and inclusion in my community. FAB directors take my needs into account and have supported me to screen and interview people interested in being support workers, therapists or homesharers.
c) Receive and administer individualized funding directly from Government…
My Aroha FAB was incorporated just as my parents and I were negotiating with a new Transfer Payment Agency (TPA) to flow my individualized support funds to me. We asked for these funds to be made payable to FAB. Ever since, my finances and contracts with any support people have been in the name of my Aroha.
d) Monitor the quality of all supports and services provided to XX.
FAB and GSA signed the Personal Support Agreement with the TPA, and this is regularly reviewed. [See Section H in Creating a Home and Good Life of My Own]
e) Own and maintain property such as the home of the person with a disability….
I already had a very good agreement with Guelph Services for the Autistic (GSA), my housing trust that administers and maintains my own home in trust for my lifetime. [See Sections C and F of Creating a Home and Good Life of My Own]. GSA has legal agreements with FAB requiring FAB to be responsible for my everyday quality of life. [See Section D of Creating a Home and Good Life of My Own]. FAB pays $1000 a year to GSA towards costs of overall administration and a share of general liability insurance, and in return GSA recognizes my FAB directors as volunteers and agents in relation to my quality of life. If GSA did not administer my home, it would be possible for an Aroha to own and administer the property which could be a social enterprise recouping some costs by having someone else share occupancy. If the Aroha owned the house, it would have to be responsibility for maintenance and all insurance (including liability insurance).
f) Make contracts with and pay any employees, independent service providers and consultants; and enter into arrangements with tenants or homesharers who may live in XX's residence to provide him with practical and social support.
[See Section G in Creating a Home and Good Life of My Own]. FAB makes these contracts after supporting me to have a decisive role in interviewing and choosing who will support me in these ways.
g) Upon receiving the appropriate authority from XX and at his direction, lawfully receive and manage funds from family trusts or other special grants…
Aroha directors are named in my parents' wills; my parents' finances have been planned to provide continuing funding beyond their deaths.
h) Advocate for additional supports and resources should they become necessary; and monitor legislation and policies which affect him, and assist in developing services and policies which affect him…
For example, FAB has a role in being informed of changes created by the new Developmental Services entities.
i) Develop sources of income as may from time to time be appropriate, including carrying on such business or other activities as are incidental to the foregoing objects… FAB has not done this yet.
References:
Andrew Bloomfield, Bridges over Barriers in my life with autism (Guelph, 2011).
AROHA - Entities for Personal Empowerment and Support [webpage on OAARSN site]
http://www.ont-autism.
CREATING A HOME AND GOOD LIFE OF MY OWN Strategies and formal agreements developed by
Guelph Services for the Autistic in its role as housing trust. (Edited by Elizabeth & Gerald Bloomfield, 2008). http://www.ont-autism.
Appendix about Aroha from Andrew's new book (2011).
My good life depends on my friends. I need them to listen to me, believe in my gifts and abilities, and support my good life. My friends comfort and inspire me with words and times we share together. As one friend wrote in my birthday card last time “true friends are those who lift you when your heart's wings forget how to fly”.
By 2000 my life plan was unfolding well. My occupancy of my own home was supported legally by a housing trust. I was regularly typing to talk. My good life revolved around me and I was involved in any decisions that affected me.
But in some of my early S-T sessions with B in 2000, I typed about my nightmares when I would wake up in the night, very anxious about how my life would be supported and what would become of me if G and E became ill or died. For example:
I am terrified when night comes and I fear that I will be left alone. The thing I am scared about is seeing the day my parents die. I believe that we must get things moving. I really want to feel secure, to know who will live here. I need to make and keep friends. How can I find friends to share interests, spend time with me, and not depend so much on Gerry and Elizabeth? I'm concerned about my future security. I need to know my means of support. I need to know that there is a safety system (10 April 2000; 8 November 2000; 23 November 2000).
We also studied anything else people had done. We decided to go ahead and incorporate a small support organization like a microboard for me. We could not use the word microboard in Ontario. So we thought of Aroha instead as the general name. It is a great Aotearoa/New Zealand word meaning sustaining love, friendship, community and caring. For the particular name of my Aroha we chose Friends of Andrew Bloomfield (FAB for short). FAB is the core of my circle of friends and has special powers because it is legally incorporated. The generic name for this kind of entity in the United States is self-directed support corporation (SSDC).
My Aroha is a creative way to keep up my good life as we had designed it after G and E are gone. I am one director and so are G and E now. There are three other directors who are very good friends of various ages, talents and life experiences. They are the core members of my circle of friends and can call on others to help in the future.
I like my friends to visit and share my life in ones, twos and small groups. But we also have had some larger FAB gatherings including a FAB dinner party, a FAB garden party and groups to discuss important issues. People stimulate one another to come up with bright ideas for new friends or activities. FAB friends have helped me to interview new support people. Another time we had a terrific discussion of the qualities of homesharers who might live here as supportive companions.
I feel good knowing about my Aroha. I know my future is safer. I feel safer knowing that my Aroha would be in charge with me, not some strangers. I'm proud I am a pioneer. I'm glad I can express this.
I have many people in my life now, so the future looks better than when I had the nightmares in 2000. Thank goodness for Supported Typing and my friends who listen to my words.
How my Aroha is important
Friends of Andrew Bloomfield (FAB) which we incorporated in early 2002 is a vital part of my life, both now and in the future.
We formed FAB when I already had many good things in my life--especially my own home and reliable support for my way of communicating so I had a big say in any decisions affecting me. But I was anxious about how my good life could continue after my parents die. My twin sister had died suddenly only four years earlier and I still felt devastated by losing her. In bad dreams I could imagine how seriously I would be affected when my parents die. It was clear I needed something like an Aroha because I have no relations in North America other than my parents.
A self-directed support corporation aka Microboard which we call an Aroha in Ontario seemed likely to help us. But other families also find the Aroha mechanism helpful. An Aroha is good for anyone! Family members including siblings usually are relieved that others are sharing the responsibilities. Aroha directors who may have taken up this role through caring deeply about the person's parents, come to feel a great deal of satisfaction. They get to like and speak up for the person whose Aroha they serve on. They feel reassured by getting to know and sharing their roles with other directors. They find the Aroha experience also helps them with supporting other relations.
As an incorporated entity, an Aroha has legal responsibilities and obligations. These are spelled out in legal language in the process of incorporation. As an Aroha cannot be a registered charity (it is for and about a single individual) its obligations are a bit simpler. The business and legal responsibilities are highly important and are detailed more below.
A: My Aroha friends are important for who they are, what they do now, and what they can do to support my good life into the future.
The most important qualifications for being director of my Aroha are: knowing me, listening to me, caring about what matters to me, and sharing time and interests with me. It is good for me to get to know people as individuals and in small groups. The various Aroha directors should have a strong sense of shared purpose in supporting my good whole life.
When I am getting to know a new person--someone who might provide paid support and especially someone who could become a trusted friend like a member of my Aroha--the best way to start the relationship is to join me on a walk with my dogs. I don't like to talk so much on the walk, just be together. Then it's good to have tea together at my home, perhaps sharing a board game. When we first meet, it's good to have someone along whom I already know until we have a good and easy relationship. Other people will have other good ways of getting to know new friends. It's most effective to start by building on strengths and what could be shared interests. If the new person asks questions of me, I should have someone to support my way of communicating. A new person might ask more questions by email, and I could comment and ask my own questions of that person.
Once people know me, we keep in touch about how my life is going--through monthly reports and newsletter by email. My new book is very helpful to show my present gifts and needs. (I asked the president of my Aroha to write the Foreword.) Of course my directors know how I express myself reliably--I hope they can actually support me but certainly they listen to and respect what I say.
We keep in touch with the Aroha directors' lives and families too. I am fortunate that the three non-family directors of my Aroha have been constant for the past ten years. (My parents and I are the other three directors of FAB.) They are of different ages--all younger than my parents and one younger than me--and have various skills, personalities and interests. I spend regular times with each of them and often their whole families. One of my directors has lived on the same farm for the past 20 years: I have met there with her for Supported Typing and for ten years worked with her daughter's horses and in the farm forest. The president of my Aroha is a professor in a neighbouring city: I have done copy-typing for him and we have had regular times of biking, hiking, and board games. My other non-family director used to be my tutor when I first set up my own house. When she married, she and her husband settled in my neighbourhood, and her husband is my running partner.
Aroha directors need to get along with each other and to have a strong sense of shared purpose around my good life. My FAB directors did not know each other so well when they first agreed to serve. I have hosted social events such as potluck lunches and dinners as well as a larger FAB dinner party and FAB garden party for 25 plus people also including other members of my circle of friends. Social events are not the easiest occasions for me, but I do like to see everyone being animated and happy. I love to be host and wanted the dinner party just to be fun. For part of the garden party, people could move around activity stations in my house and garden learn about and try out activities and interests that are important to me.
All I have said so far is a necessary basis for the formal responsibilities of an Aroha. The rapport and shared understanding are most important. If it's hard to actually get people together very often, email can help to keep in regular touch.
How do my Aroha directors help with all the objects of an Aroha?
For formal purposes, an Aroha is like any other not-for-profit corporation. It operates under a set of bylaws and complies with reporting requirements.
[See Section B in Creating a Home and Good Life of My Own]
The functions of an Aroha are to:
a) Support XX to understand the main factors that affect his life and well-being, to respond to the initiatives he expresses, and to ensure his needs and wishes are heeded…
My directors keep in touch with the ups and down, the challenges and opportunities, of my life. As I am quite expressive with Supported Typing, I can tell them what I am thinking and ask their help. They can send me questions and ideas of choices I might make and meet with me when I have independent communication support. I really want to make it possible for FAB directors to support my typing as well for at least short conversations.
b) Promote the support and respect of XX by workers and friends in his community who understand how he copes with severe disorders and who respect the alternative and augmentative ways in which he communicate…
I welcome any suggestions and connections that my FAB directors may make to increase acceptance and inclusion in my community. FAB directors take my needs into account and have supported me to screen and interview people interested in being support workers, therapists or homesharers.
c) Receive and administer individualized funding directly from Government…
My Aroha FAB was incorporated just as my parents and I were negotiating with a new Transfer Payment Agency (TPA) to flow my individualized support funds to me. We asked for these funds to be made payable to FAB. Ever since, my finances and contracts with any support people have been in the name of my Aroha.
d) Monitor the quality of all supports and services provided to XX.
FAB and GSA signed the Personal Support Agreement with the TPA, and this is regularly reviewed. [See Section H in Creating a Home and Good Life of My Own]
e) Own and maintain property such as the home of the person with a disability….
I already had a very good agreement with Guelph Services for the Autistic (GSA), my housing trust that administers and maintains my own home in trust for my lifetime. [See Sections C and F of Creating a Home and Good Life of My Own]. GSA has legal agreements with FAB requiring FAB to be responsible for my everyday quality of life. [See Section D of Creating a Home and Good Life of My Own]. FAB pays $1000 a year to GSA towards costs of overall administration and a share of general liability insurance, and in return GSA recognizes my FAB directors as volunteers and agents in relation to my quality of life. If GSA did not administer my home, it would be possible for an Aroha to own and administer the property which could be a social enterprise recouping some costs by having someone else share occupancy. If the Aroha owned the house, it would have to be responsibility for maintenance and all insurance (including liability insurance).
f) Make contracts with and pay any employees, independent service providers and consultants; and enter into arrangements with tenants or homesharers who may live in XX's residence to provide him with practical and social support.
[See Section G in Creating a Home and Good Life of My Own]. FAB makes these contracts after supporting me to have a decisive role in interviewing and choosing who will support me in these ways.
g) Upon receiving the appropriate authority from XX and at his direction, lawfully receive and manage funds from family trusts or other special grants…
Aroha directors are named in my parents' wills; my parents' finances have been planned to provide continuing funding beyond their deaths.
h) Advocate for additional supports and resources should they become necessary; and monitor legislation and policies which affect him, and assist in developing services and policies which affect him…
For example, FAB has a role in being informed of changes created by the new Developmental Services entities.
i) Develop sources of income as may from time to time be appropriate, including carrying on such business or other activities as are incidental to the foregoing objects… FAB has not done this yet.
References:
Andrew Bloomfield, Bridges over Barriers in my life with autism (Guelph, 2011).
AROHA - Entities for Personal Empowerment and Support [webpage on OAARSN site]
http://www.ont-autism.
CREATING A HOME AND GOOD LIFE OF MY OWN Strategies and formal agreements developed by
Guelph Services for the Autistic in its role as housing trust. (Edited by Elizabeth & Gerald Bloomfield, 2008). http://www.ont-autism.
Appendix about Aroha from Andrew's new book (2011).
My good life depends on my friends. I need them to listen to me, believe in my gifts and abilities, and support my good life. My friends comfort and inspire me with words and times we share together. As one friend wrote in my birthday card last time “true friends are those who lift you when your heart's wings forget how to fly”.
By 2000 my life plan was unfolding well. My occupancy of my own home was supported legally by a housing trust. I was regularly typing to talk. My good life revolved around me and I was involved in any decisions that affected me.
But in some of my early S-T sessions with B in 2000, I typed about my nightmares when I would wake up in the night, very anxious about how my life would be supported and what would become of me if G and E became ill or died. For example:
I am terrified when night comes and I fear that I will be left alone. The thing I am scared about is seeing the day my parents die. I believe that we must get things moving. I really want to feel secure, to know who will live here. I need to make and keep friends. How can I find friends to share interests, spend time with me, and not depend so much on Gerry and Elizabeth? I'm concerned about my future security. I need to know my means of support. I need to know that there is a safety system (10 April 2000; 8 November 2000; 23 November 2000).
We also studied anything else people had done. We decided to go ahead and incorporate a small support organization like a microboard for me. We could not use the word microboard in Ontario. So we thought of Aroha instead as the general name. It is a great Aotearoa/New Zealand word meaning sustaining love, friendship, community and caring. For the particular name of my Aroha we chose Friends of Andrew Bloomfield (FAB for short). FAB is the core of my circle of friends and has special powers because it is legally incorporated. The generic name for this kind of entity in the United States is self-directed support corporation (SSDC).
My Aroha is a creative way to keep up my good life as we had designed it after G and E are gone. I am one director and so are G and E now. There are three other directors who are very good friends of various ages, talents and life experiences. They are the core members of my circle of friends and can call on others to help in the future.
I like my friends to visit and share my life in ones, twos and small groups. But we also have had some larger FAB gatherings including a FAB dinner party, a FAB garden party and groups to discuss important issues. People stimulate one another to come up with bright ideas for new friends or activities. FAB friends have helped me to interview new support people. Another time we had a terrific discussion of the qualities of homesharers who might live here as supportive companions.
I feel good knowing about my Aroha. I know my future is safer. I feel safer knowing that my Aroha would be in charge with me, not some strangers. I'm proud I am a pioneer. I'm glad I can express this.
I have many people in my life now, so the future looks better than when I had the nightmares in 2000. Thank goodness for Supported Typing and my friends who listen to my words.
