Senior Parents' Forum, New Westminster Public Library

Chairs: Mike Keating, Linda Perry

1. Introductions were made around the room. Many people new to the coalition attended today. Some families expressed concerned about changes to their family members' situations as they are very happy. Others expressed hope that more opportunities will arise for their family member who lives at home or in an inadequate setting. Some people expressed concern about who will look after their family members when they are no longer able.

2. Chairs expressed thanks to the groups that helped coordinate today's event: Families of Mentally Handicapped People, Parent Support Group, Burnaby Senior Parents Network, BCACL & PLAN.

3. Update from Laney Bryenton on the Interim Authority: Board has 24 members, 22 are family members. Board members are from around the province. On Friday, the Minister delivered his Letter of Instruction to the Board. This outlines the steps that must be taken to prepare for the transition to a Provincial Authority named Community Living BC. The letter includes "Readiness Criteria" that outline everything that must be in place before a transition can take place. The planned transition date is the end of September, 2003. This transition should be seamless for people being served in community living services and for staff. Managing this year's budget is the second task. It is important that all the resources currently dedicated to Community Living be identified and transferred to the new Authority. In the Minister's Letter of Instruction, the Minister has appointed Jane Holland, the Service Quality Advocate, to have an enhanced role in safeguarding people in community living services, especially during this time of change. The new Authority will have to be accredited two years after its first annual report is filed. The letter and readiness criteria should be posted on the website and available in print within the next week. The budget reductions this year have been managed in a cooperative process with the co-management group. Any changes to services must be voluntary on the part of the people served and their families. Next year's budget is still the unknown question, but the community must ensure the government is aware of how hard we've worked to protect services and find savings this year. How will we serve more people with less money? The Service Strategies of the Co-Management team have asked service providers to look at their existing services and see if there are ways to either increase capacity at no increased cost, or to do things differently and save funds. Service providers across the Province have developed plans and they are confident that this year's budget targets can be met. If agencies have replied that they can't find savings, they will meet with other agency Executive Directors and discuss what other agencies have done to find savings. Families want to have a say with their local associations' plans. Each agency must include family and individual consultation as part of their plan. Families can ask for more input to their agency's plan and to be kept informed of the plan's implementation. Most funding increases over the past 10 years have been directed to collective agreement funding. The drawback of this is that waitlists have increased. The benefit is that Community Support Workers are now better trained, take their roles seriously and consider it a career now, and there is much less turnover. How can families address concerns such as user fees added to existing day programs for activities? The Interim Authority must realize that many families are 24 hour per day caregivers and cannot attend meetings or join committees or boards of directors.

4. Facilitators - Mildred DeHaan & Jack Styan - Mildred discussed the overwhelming amount of information on changes that is flowing past families. "Knowledge is Power" she said, but people need time to process the information and discuss the impacts that changes might have on their family members. Mildred asked families to be open and clear about their concerns to get us started on ensuring that the Interim Authority knows what they can do to help senior parents feel more comfortable about the future for their family members.

Issues	Solutions
1. Services
Waitlists, Services required
- Many senior parents remain in the primary care-giving role. They are aging and are worried about caring their sons and daughters in the future. Who will care for their sons or daughters once families are unable to?
- Sons and daughters are waiting for services and have been on waitlists for a very long time.
- Some data suggests that as much as 70% of people with disabilities are not receiving services.
Quality of service
- Situations exist where parents are not satisfied with and in some cases are very concerned about, the quality of their son or daughter’s service. Some of these have requested changes but have not been responded to.
- Other parents have sons and daughters being served in very satisfactory situations. They don’t want to be forced to change or to have their services deteriorate.
- Some parents have not been listened to by organizations supporting their sons and daughters. Decisions were made without family input.
- Monitoring family care homes has been inadequate.
- In some instances, government “inspectors” (Community Care Licensing, Health Services for Community Living, etc.) are making or limiting choices for people.
Service Options
- Many service options (i.e. group homes as well as family care) have been available in the past. Parents want to have the same options for their sons and daughters that other families have had.
- Family care has been described as the solution for many problems, not the least of which is financial. Concerns with family care include:
o a change of service provider means a change of home;
o family care doesn’t necessarily bring a relationship or continuity of care that agencies are able to provide
o families are not so comfortable visiting and monitoring as it is someone elses home; and
o for some individuals group homes provide a better environment or provide a necessary level of support that is unavailable in a family care home.
- Individuals have been denied some options by service providers (i.e. achievement centres). Parents feel disregarded in the process of closing those achievement centres - the impact on their family members was not considered in the decision.
- There are few retirement options for seniors with disabilities .
- Willow Clinic will be closed within a year. Where will existing residents go and where will people go for tertiary care services?
- Some options for service have not been available to people. For example, service in the family home or payment to a family member for care.
2. Transition to Community Living BC
Accountability
- The lack of legislative framework means that Government is not obligated to assuring that all people have their needed services.
- There is no mechanism for parents or individuals to hold service providers responsible. Shared responsibility should be accompanied with shared authority.
- People without families are particularly vulnerable during periods of transition and budget reduction. Who will watch out for people with disabilities who do not have family members in their lives?
- The role of siblings, in legislation, regulation and policy, has often been overlooked.
Communication
- Parents have felt excluded from decision-making and want to be heard.
- There are many families who remain unaware of changes. If their family member receives no services, they may be still unaware of planned changes.
- Parents are concerned about what changes will mean for their son or daughter and for themselves. Examples include:
o What will Individualized Funding mean for families?
o How will globally funded services be impacted?
o What does shared responsibility mean?
o How do communities take more responsibility?
- Some parents are fearful of speaking up for their family member with service provider in case services are put at risk.
- Parents need more opportunity to speak with other parents. Parents need a place to gather, to share information and stories, to speak and be heard. This needs to be autonomous - free of government and service provider funding.
- Siblings also need to be supported and their contributions need to be recognized.
3. Financial concerns
- Budget cutbacks are a concern because of the impacts on services. There have been several impacts to date, including cutbacks to health care - podiatrist fees, optometrist fees, etc. and access to dental care for people over sixty five.
- Budget cuts increase waitlists and make changes in the system and services more risky to people with disabilities.
- What good is a plan if there is no funding for it. There doesn’t seem to be enough funds to support all individuals.
- At least one service provider is starting to charge new user fees for day support activities. What if individuals can’t afford to go?
- Can the authority deliver on its promise of serving more people with the same quality of service for less funds? If it can’t what are the consequences?

Solutions

People with no families

- Assign someone responsibility for people with no families.

- Pair more capable self-advocates with people who have no family involvement – for social opportunities and advocacy.

- Use more volunteers.

- Use representation Agreements as a way of building decision-making support around individuals.

Family support and empowerment

- Create a place where families can turn and be heard (e.g. PLAN, Family Support Institute, Western Family to Family). It must help all families and be run by and for families.

- Use the new Planning Centres as family resources for gathering and support.

- Give siblings legal recognition as family members with same authority as parents.

- Make family a part of the contracting process for their family member's services.

- Recognize families’ financial contributions without penalizing the individual with disability.

- Connect families with another family who has had similar experiences. Families are the experts on their children.

- Support families who attend meetings about changes for their family members be ensuring they have someone to go with them.

- Ensure local associations are supporting families through information sharing, gathering families for shared support, and providing ways to build support for those people who don't have families. Add this responsibility to their contracts.

- Make sure that service providers revisit their commitment to involving families.

Services

- Deliver services in the family home - if the caregiver leaves, the individual keeps his home.

- Offer family care in the home of the person receiving service.

- Provide financial support to siblings providing family care support.

Accountability

- Ensure a legal framework for services.

Communication

- Get more information to families to understand the coming changes/options, in particular about IF and Planning Centres.

- Develop new outreach strategies.

Advocacy

- Continue and enhance political advocacy - families need to continue their strong advocacy with MLA's so they are aware of the issues and the strength of the Community Living movement. (Write, phone, meet)

- BCACL needs to have a louder voice on behalf of all of us. BCACL should listen to all families across the province and get a brief to Government.

5. Next steps: (suggestions)

	Develop a brief on the issues to take to the Board of the Interim Authority
	Develop a brief after province wide consultations that can be delivered to Cabinet Ministers in Health, Education, Human Resources, Children and Families - not just one Minister.
	Follow-up meetings on the senior parents' issues to keep people informed and involved
	Give Ministers the real picture of what families are struggling with when they have a family member with a disability - Families could invite their MLA's to a small meeting of families to tell their stories, give them a chance to learn more
	Gather information from across the province to broaden the picture of issues that families face

6. Conclusion on Next Steps:

Develop a brief and make a presentation to the Board of the Interim Authority

	Lois Godfrey, Lyle Lexier, Janice Reithofer, Gwen Lee, Mildred DeHaan, Bob Kiell and Ingrid Lyons - form a working group to develop a presentation
	Coalition will use the network of Communications Facilitators to gather information from across the province to provide a province-wide perspective

Ask the Board of the Interim Authority (or permanent Authority) to come back to a community meeting to respond to the presentation of our working group.

Distribute information from this meeting to all the people who attended by mail.

Have a follow-up meeting to report on progress with the presentation.

7. Meeting adjourned - 1:55pm

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The Alliance is an open and inclusive gathering of people and organizations dedicated to empowering individuals and families to make decisions about how they lead their lives in the community.	Alliance for Community Living Contact the Alliance Last updated: 07/25/08

Issues

Solutions

1. Services

Waitlists, Services required

Quality of service

Service Options

2. Transition to Community Living BC

Accountability

Communication

3. Financial concerns

Solutions

People with no families

Family support and empowerment

Services

Accountability

Communication

Advocacy