Passing the Torch: Transitioning Family Supports to the Next Generation. Section 1 Transitioning Personal Networks: Planning and Support

Transcription

1 Passing the Torch: Transitioning Family Supports to the Next Generation Section 1 Transitioning Personal Networks: Planning and Support

2 Copyright 2010 Community Living Society

3 Introduction to the Resource Guide The idea for this resource for families and personal support networks in generational transition began with a series of conversations with family and network members about how the Community Living Society (CLS) could better support family leadership and involvement in the organization. Through these interviews, it soon became clear that there was a transfer of personal support occurring from one generation to the next. As parents and other family and personal network members begin to face health and mobility challenges, they are sometimes less able to have the regular presence they formerly had in their supported family members lives. In some cases the transition of responsibility to siblings and other younger family members is already in progress, or at least in the planning stages. Many of the people we serve have siblings, as well as other family members and friends, who are already well-connected. However, unexpected events such as illness can precipitate the transition of responsibility before the necessary transfer of information is completed. The ongoing involvement of family and other networks of support in the lives of the people we serve is critical for their health, happiness and personal safety. As we learned about the specific information and communication needs of the next generation of support networks, we discovered that these were quite different from those of their predecessors. As an organization we realized that we needed to offer information and support that was designed to better meet these new needs. (Some of the material for this guide was taken directly from websites or printed information from organizations other than the Community Living Society and therefore there may be slight inconsistencies in the language used.) Passing the Torch: Transitioning Family Supports to the Next Generation Section 1: Transitioning Personal Networks: Planning & Support Page 3

4 This resource guide is comprised of 8 Sections Transitioning Personal Networks: Planning and Support (Family and Network Involvement; Planning for Transition; CLS Resources; Other Community Resources and Supports) Community Living Society (Formation (Woodlands Parents Group); Funding Sources; Mission, Vision, and Values; Organizational Structure; Policies and Procedures; Strategic Plan; How You Can Be Involved) Support Service Options (CLS Services; Other Service Providers; Requesting a Change in Service) Roles and Responsibilities (Persons Served; Families and Networks; Community Living Society; Other Community Organizations) Financial Information (Funding Agencies and Eligibility for Services; Income Assistance; Registered Disability Savings Plan (RDSP); Trusts and Wills) Supported Decision-making and Legal Information (Decision-making Capacity and the Law; Representation Agreements; Public Guardian and Trustee; Legal Representation) Advocacy and Support for Families and Networks (CLS Family Support Worker; Family Link; Planned Lifetime Advocacy Network (PLAN); Microboards; TYZE Personal Support Networks; BC Association for Community Living (BCACL); Other Advocacy and Support Organizations) Communication and Problem-solving (Information Sharing; Communicating Feedback; CLS Approach; Complaints Process; Dispute Resolution Options CLS, CLBC, and Provincial Advocate for Service Quality) Page 4 Section 1: Transitioning Personal Networks: Planning & Support Passing the Torch: Transitioning Family Supports to the Next Generation

5 Transitioning Personal Networks Planning and Support Why use this section? If you are undergoing a current transition of personal supports for a person who receives services from the Community Living Society If you want to involve new family members or friends into the personal support network of a person with disability For a list of questions to prompt the planning for a future transition To learn about resources and supports that exist for family and network members in the community Family and Support Network Involvement for People Receiving Residential Supports Nothing is more important that the involvement of family and network members in the lives of people receiving paid supports. The Community Living Society (CLS) was founded by parents of children with disabilities who wanted to make sure that their family members who lived in staffed homes in the community would always have unpaid people in their lives. This circle of family members and friends are the people who help support decision-making, provide natural oversight, and help make lasting connections in community. CLS supports family and network members to be present and active in the lives of the people for whom we provide residential services in a number of ways. Families and networks choose who will be the primary contacts for the supported person, and how information is received. They are made welcome in the homes of their loved ones, and often participate in their daily activities. Paid employees assist the person with disabilities to be in regular contact with their family and network members, and communicate information so that the people in these networks know what is going on the daily lives of the persons served. Sometimes, for reasons of aging, health, or other life circumstances, it becomes difficult for family and network members to be as active in the lives of supported persons. As parents get older, they Passing the Torch: Transitioning Family Supports to the Next Generation Section 1: Transitioning Personal Networks: Planning & Support Page 5

6 may encounter obstacles to being as present in the lives of their children, such as difficulty with transportation. This can be a very stressful and worrying time for parents and other support network members. Often this is when siblings and younger generation family and friends step in to play a larger role. But these family members and other contemporaries of the people we support are leading increasingly busy lives, often juggling the needs of their children, their aging parents, as well as the demands of full-time jobs and community obligations. It is very important that this next generation of support network members get the assistance they need to continue to be present in the lives of the people with disability that they support. Planning for Transition: What you may need to think about Community Living Society (CLS) Do all the members of the support network know who to contact at CLS, and for what? Do they know what to expect from CLS? What are the ongoing ways in which the family and network members who are transitioning into the role will contribute to the life of their family/network member (attending meetings and medical appointments, organizing or participating in social events, arranging for vacations, etc.) Are they aware of the ways that they can participate in the organization (committees and working groups, etc.)? Support Service Options Do the members of the support network know what service options and resources are available and how to access them? If the person served by CLS or their network want a change in the service that is being provided, do they know who to contact? Do the newer members of the support network or transitioning family members know how to request a change of service provider? Roles and Responsibilities Who will be the primary contact for decision-making? Who will be the primary contact for information-sharing? Page 6 Section 1: Transitioning Personal Networks: Planning & Support Passing the Torch: Transitioning Family Supports to the Next Generation

7 What kind of information needs to be communicated, how often, and how will the communication happen (visits, telephone calls, meetings, written reports)? Who will be attending the annual Individual Service and Quality of Life (ISQLP) goal planning meeting? Which network members need to receive updates about the ISQLP goal plan? Who needs to receive written communications from CLS? How should this information be communicated ( , written correspondence, etc.)? Financial Information Can the person served make their own financial decisions? If not, who will help with these decisions? Do the family/network members know where the funding for support services comes from, and how it is allocated? Do the support network members know the financial rights of the person served? Do they know how to set up a trust or establish a Registered Disability Savings Account on behalf of the person served by CLS? Supported Decision-making and Legal Information Who will assist the person served with important decisions? Who will give authorization in an emergency or for medical procedures? Is there a Representation Agreement in place? If not, do you need help getting one written? Do the family and network members know how to access legal help for the person with disability they are supporting? Advocacy and Support for Families and Networks What advocacy and support resources will the family and network members need to access? Do they know how to find out more information about advocacy and support? Passing the Torch: Transitioning Family Supports to the Next Generation Section 1: Transitioning Personal Networks: Planning & Support Page 7

8 Communication and Problem-Solving Do the family and/or network members who are transitioning into the role know how to make their concerns and appreciations known? Do they know how to access the CLS Family Support Worker? Are they familiar with the CLS complaints policy and dispute resolution process? Are they aware of and familiar with the dispute resolution process through Community Living BC or Ministry of Health, and the Ministry of Housing and Social Development Do the support network members know about the role of the Provincial Advocate for Service Quality? Resources and Supports There are a number of resources for parents or other support network members who are facing a transition in their role: The Family Support Worker who is contracted by the Community Living Society is available to meet with family and other support network members to plan, explore options and access resources, as well as offer emotional and practical support. The Family Support Worker can be contacted through the Administration Office of the Community Living Society, or by at dsmith@cls-bc.org. Family Link, a parent-founded organization associated with CLS, offers support to family members by attending meetings, helping to explain systems and offering advocacy and emotional support to families and other and network members. Family Link can be contacted through the CLS Administrative Office, or by at familylink@cls-bc.org. Parent and Family Support Groups, located in communities throughout BC, can also assist with planning for the greater involvement of younger family members and friends. You can locate a support group in your area by contacting one of the two organizations below: Page 8 Section 1: Transitioning Personal Networks: Planning & Support Passing the Torch: Transitioning Family Supports to the Next Generation

9 Family Support Institute A province-wide organization whose purpose is to support and strengthen families faced with the extraordinary circumstances that come with having a family member who has a disability East 6 th Avenue Vancouver, BC V5T 4P4 Phone Website fsi@bcacl.org Family Net An independent provincial network that provides a provincial voice for children and youth with special needs, adults with developmental disabilities and their families. Their website has an exhaustive list of support organizations. Fax Website info@bcfamilynet.org Passing the Torch: Transitioning Family Supports to the Next Generation Section 1: Transitioning Personal Networks: Planning & Support Page 9

10 Resources In the interests of space, website information only is listed for the following organizations. If you do not have access to a computer, and you need help finding telephone numbers or addresses, please contact the CLS Coordinator of your services, or call the CLS office at for assistance. BC Association for Community Living (BCACL)... BC Human Rights Coalition... Community Care Licensing Branch... (Ministry of Healthy Living and Sport) Community Legal Assistance Society...www2.povnet.org Community Living British Columbia (CLBC)... Community Living Society (CLS)... and Handbook of CLS Polices and Procedures for the CLS Community (available on the CLS website, and at the homes and day centres supported by CLS) Family Link Society ( )...familylink@cls-bc.org Family Net... Family Support Institute... Lawyer Referral Service... Ministry of Health BC: Vancouver Coastal Health and Fraser Health Authorities... Ministry of Housing and Social Development... Planned Lifetime Advocacy Network (PLAN)... Public Guardian and Trustee of British Columbia... Tyze Personal Networks... Vela Microboard Association... Page 10 Section 1: Transitioning Personal Networks: Planning & Support Passing the Torch: Transitioning Family Supports to the Next Generation

11 Notes Passing the Torch: Transitioning Family Supports to the Next Generation Section 1: Transitioning Personal Networks: Planning & Support Page 11

12 For more information contact Community Living Society Roberts Street Burnaby, B.C. V5G 4C9 Ph Fx