OISD—Building the circle of support

by Karina Wallis, Muiriosa Foundation

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Optimal Individual Service Design (OISD) is a model of service delivery that operates from the principle of serving one person at a time. The design of the service is unique for each individual as it evolves from the premise of providing the right support at the right time to enable the individual to live a life of their choosing as an equal citizen.

This is a complete departure from the traditional practice of placing the person into a service option that was designed before the person was known to the service. The OISD model of service delivery is uniquely attuned and responsive to the needs of the person, supporting them to shape their life narrative in a manner that is meaningful, honours their personhood and reflects their worth as a valued and contributing citizen. It re-establishes the role of natural non-paid supports in the person’s life, uses paid supports as required, and favours the use of generic resources rather than sole reliance on segregated and congregated options. The circle of support is one of the suggested approaches in the OISD model to regenerating natural supports.

The development of the OISD model of service delivery in Ireland is largely attributable to the work of Michael Kendrick. He has developed the leadership course ‘Achieving deep quality in individualised service and support arrangements – Optimal Individual Service Design for key service leaders’, and he has delivered it in Ireland, Holland, Canada, New Zealand and Australia.

Circle of support

People who are vulnerable because of their disability will always need someone to ‘look out’ for them. This role is often limited to parents, which invariably raises the worrying question of who will ‘look out’ for their son or daughter with a disability when they are no longer in a position to do so, owing to ill health or death. Helping to build a voluntary circle of support around the family member with a disability is one way to address this question. A circle of support is a group of people intentionally invited to come together in friendship and support of a person who has a disability for the purpose of protecting their interests into the future. This group meets on a regular basis to review the progress of the group. Such a group is established on the basis that, if asked, people may be pleased to agree to join the circle to ‘look out’ for the person into the future by staying in contact and taking an interest in their life—but not on the premise that this group will have an ongoing responsibility ‘caring’ for the person (Barrett).

As a parent or family member wishing to develop a network for your family member with a disability, you may wish to take the following steps. Be sure that your family member is in agreement with such an undertaking and that they have a genuine say and involvement throughout the process.

1. Mindset
The most important operational issue that must be addressed is the mindset from which you are operating. Parents and family members must believe that there are people who will willingly spend time with their family member with a disability without being paid to do so.
If you do not believe that such people exist then you will not wholeheartedly seek out such people to ‘look out’ for your family member with a disability. The self-fulfilling prophecy will prevail and the life-enriching opportunities that come with a circle of support will be denied the person with a disability.

2. Identifying the people
Before delving into setting up a circle of support it is worthwhile to do some research. Are there another parents you know who have already set up a circle of support? How is it working? What have they learned? What advice can they give to help you to avoid any pitfalls they may have stumbled into?
If no one comes to mind, the local voluntary or statutory agency serving people with a disability may be able to provide information or link you in with various families who have established a circle of support. You can search the internet. There are a number of useful websites at the end of this article.
Who to involve is the next consideration and the often heard response to this is that there is nobody. With the appropriate mindset in place it is assumed that there are people willing to accept the invitation to share in times of joy and prosperity and to stand by the person in times of adversity. So start now—what you put off today you will also put off tomorrow. Who might be the right people to ask? The following may help to answer that question. People who:

  • have developed a relationship with your family member with a disability over time
  • enjoy being in his or her company
  • the person with a disability looks forward to seeing
  • may be in your personal network of friends or that of any close family member and might be interested in being involved in the person’s life
  • are similar in age—brother, sister or friend of theirs
  • have a great rapport with the person though they seldom meet
  • share a common interest with your family member with a disability e.g. enjoy football, swimming, classical music, knitting etc.
  • have the right connections, i.e. they know people who can open up or ease access to potential employment, leisure, recreation or spiritual opportunities for the person with a disability
  • will facilitate the person with a disability to connect and build relationships with other people . once had a good relationship with the person but have lost touch over the years—a former teacher, staff member, advocate etc. The above list, though not exhaustive, gives you the ‘why’ for your choice of person and prepares your answer to the possible question from the person—‘why ask me?’

Do not let a shortlist deter you from moving on to the next step. It can just take one or two of the right people coming together to get the circle of support off the ground. They in turn may enlist others over time

3. Issuing the invitation
Before issuing the invitation it is critical to be clear about what you are asking.

  • Clarify what you are asking of the person and ensure it is framed in terms that positively reflect on your son/daughter with a disability— My son/daughter has a great zest for life and naturally we want to ensure that s/he lives life to the full. Given your rapport/interest etc. you might come along to an informal get together to assist us in figuring out how we can make this a reality into the future. (Rather than) My son/daughter has no one in his/her life except us his parents would you be willing to spend time with him.
  • Decide who does the asking Are you the best person to do the asking? Is there someone else who will elicit a yes response? Is there more than one person?
  • Decide when is the best place and time to ask.
Coming together as a circle of support

1. Prior to the gathering
You may not wish to take on the role of facilitating this first gathering of the circle of support. In deciding who to get to facilitate you might consider the following:

  • Do you want a family member or an independent facilitator to facilitate the meeting?
  • If you opt for the independent facilitator, a fee for their work will be required, which may be worthwhile as an initial investment, to get things started. In this case, arrange for the facilitator to meet with your son/daughter beforehand One option is to have all circle of support members give of their time freely, not contracted to attend by an employer. The facilitator may be a member of the group and offer his/her gift of facilitation without monetary compensation. A second option is to have a similar group, but if a natural facilitator does emerge from the group, a facilitator may be hired. You and/or the person with a disability hires and pays the facilitator. A third option is to have a mix of voluntary members and members who are paid by another employer to attend. Whichever option you choose the key focus of the circle of support must remain with the person with a disability. With regard to potential conflicts of interest, the needs of the person with a disability trump all other needs.

2. At the gathering

  • Define the purpose of the circle of support
  • Establish and agree guidelines regarding membership of the circle. These may include:
  • Members come to the gatherings in a spirit of relationship, contribution and mutuality
  • Building and cementing a reciprocal relationship with the person with a disability is a given
  • Participation as members of the circle of support is voluntary
  • Presumption of competence, capacity building, respect, informed decision and informed choice making are integral to the circle of support
  • The circle of support meets regularly once a month perhaps initially and then bi monthly or as often as is deemed necessary
  • Establish and agree an over-arching vision for the person with a disability
  • Formulate a plan to assist in moving toward the vision taking cognisance of the most pressing needs of the person with a disability.

The plan should include:

Objectives which clearly state
1. what will happen

2. how it will happen

3. when it will happen – time, days, etc

4. where it will happen

5. type of support required
(a) paid – person(s) and/or resources role of paid person
(b) natural supports – who etc role of natural support

6. a value base underpinning objectives

7. review process regarding outcomes

3. Sustaining the network

This is often the most difficult part—to keep the group going. It may be worth considering paying an independent person to take on the role of driving the process, as any group will require someone to bring them together, set the agenda and ensure agreed actions are implemented and reviewed as part of an on going process. This might require paying someone for about 10 hours a month. This person will be paid by you and/or the person with a disability and will not be contracted by another employer to undertake these tasks. Taking this approach ensures that the person is directly accountable to you and the person with a disability.

Whatever the cost, it is money well spent as the return on such an investment will support the circle to function effectively and assure its survival into the future.

Why create a circle of support for your family member with a disability?
Research has demonstrated that people with an intellectual disability usually have only family and paid staff members in their lives. They are vulnerable by the nature of their disability and having such a limited network of relationships renders them even more vulnerable. Creating a circle of support of freely given relationships provides a further layer of safeguards in terms of addressing the person’s vulnerabilities. It creates the opportunity and potential for long and enduring reciprocal relationships to flourish thus enriching the life of the person with a disability. It also provides a means for you’re the person with a disability to be connected to people who appreciate his/her qualities, attributes, skills and who have introduced him/her to other people and places where such qualities, attributes and skills, can flourish, be appreciated and even paid for.

Jayne Barrett outlines the further roles a circle of support can fulfil:

  • Help the person with a disability think about their life and picture a great future
  • Monitor and provide guidance to the person as they move through their life
  • Help the person with decisions that they make
  • Help the person to pursue their ideal living situation
  • Help the person to have a good support systems through involvement in recruitment and informal training of paid workers
  • Help the person retain their personal history and relationships
  • Help the person have a fulfilling career and pursue enjoyable and challenging recreation and leisure interests
  • Hold the service provider accountable for their support services
  • Help the person to have and monitor that they receive excellent health care, are emotionally healthy and have financial security
  • Consider issues which relate to guardianship
  • Celebrate the person’s achievements and stand with them through hardships.

What does a good circle look like?

A good circle of support will:

  • Ensure that the person with a disability is welcomed and regarded as a contributing member of his/her community
  • Ensure that the person with a disability has regular opportunities to be an active community member through employment or business ownership, voluntary work, education and a range of regular recreational and leisure pursuits
  • Ensure that the person with a disability lives in their own home where s/he enjoys being host, entertainer, friend, neighbour, partner etc.
  • Ensure that the person with a disability’s home is a place that s/he takes pride in, feels secure in, has privacy, and that provides the retreat and sanctuary that may be required from time to time
  • Ensure that loneliness and isolation are not a part of having a disability

Can I do it?
Yes you can! Start now by checking out the following websites and books.

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