The Process

The Process

Question 2: 
How do we want to work together to create/plan for our services, our supports and our community? How do we want to make decisions and plans?

 

Stable Systems/Support

·         Requires a common vision.

·         There must be a commitment to individualized service at all levels.

·         Services need to respect individuality and cultural diversity.

·         Life planning – child, youth, adult, seniors.

·         Right to love – recognize the importance of relationships and family and parenting.

·         A stable environment allowing for community inclusion.

·         New referrals for service should come with new money, not asking agencies to serve new people with existing dollars.

·         Each agency should have a pool of (enough) money it can access to bridge the time it takes to get government approval when individual needs change.

·         Foster flexibility.

·         Funding follows/belongs to the individual, not the government agency. Individual accountability.

·         Decisions should be client based, not based on what funding is available in the system.

·         SIS is too biased and inaccurate. Get rid of it. We need a body independent of government to conduct interviews to avoid bias and conflict of interest in determining level of needs. Translate that into funding vs. SIS. Ensure that the funding is available.

·         Plan for multiple years to provide stability.

·         Ensure ongoing, secure funding.

·         Pay and benefits equal for PDD, agency staff and family-managed care staff.

·         Pay staff appropriately.

·         Living wage for day staff. Need an appropriate way to live.

·         Living wages

·         We should be able to hire trained staff.

·         Ensure staff are well-trained

·         Include people with disabilities as part of organizations to help guide services.

·         Role for Human Services – assessing technical issues that would make things easier.

·         Opposite of intimidation – joyful.

 

Everyone at the Table to Build a Shared Vision and Plan

Who is Involved

·         Pause? Rewind please. [Let’s start over with everyone involved in decisions.]

·         People with and without disabilities working together to come up with services for specific disabilities that meet individual needs.

·         Include people in decision-making that affects their lives.

·         Participation by all levels of government (federal, provincial and municipal).

·         Political commitment to participate at a senior (Deputy Minister) level of administration in moving the plan forward

·         Inclusiveness in planning process (e.g., business, health, housing)

·         Include alliances, coalitions, fearless leadership, community and allies from other sectors.

·         Representation

·         New: older voices

·         People with disabilities, families and front line workers at the table. Ask and involve.

·         Important to include diverse sizes of organizations, not just a few mega-agencies. Need funders to know that small organizations can be very valuable and provide excellent service.

·         Calgary Transit and people with disabilities working together on transportation issues.

·         Town hall meetings with government, PDD, agencies and clients on a regular basis.

·         PLAN – families connect to work on the future

·         Alberta Disabilities Forum – research around various systems.

 

How We Work Together

·         Equality view – meaningful discussions between all stakeholders—politicians, families, people with developmental disabilities.

·         Collaborative approach, including, parents/guardians, the persons themselves, workers, unions, funding agencies

·         Belief of whole community: everyone is important has a role.

·         No bullying.

·         Policy/Program – have a process to ask difficult questions/dialogue.

·         What are the outcomes for the field? Joint Committee tables – is it one table or different issues across the province?

·         Different democratic approach. Participatory instead of representative.

·         Identify who should be involved. Look for participation, not representation.

·         Roles – understanding that you have something important to contribute

·         Person-centered – and by this we ain’t talking token!

·         Token-free zone – 2

·         Equal access

·         Cross-pollination

·         Sustained effort.

·         Change takes time. Provide time and plan.

 

What We Need to Do

·         Begin with the end in mind – the vision of a good life.

·         Start with thinking about what are the components of a good life, like education, employment and other meaningful options if a person can’t work.

·         Develop mission & vision statement that everyone can commit to! Identify agreed-on “basics.” Get clarity. What are the deal-breakers?

·         Shared goal of supporting people to have a good life.

·         Common ground – Define accountability, outcome measures, terms of service.

·         We need specific goals – work backwards with timeline.

·         Focus on Outcomes – have joint planning with individual, family, service provider and PDD.

·         Develop an assessment process which includes the person, doctors and health care providers, disability service workers, parents/guardians and the social workers.

·         Constant reflection with the individual and the family.

·         We need to work with partners to ensure that people are not waiting for nursing home access in a bed in a hospital hallway. Work on these issues with PDD, health, home care, agencies, family, clients

·         Have groups that meet (e.g., autism and other disability groups) who can guide service providers.

·         Alberta Council of Disability Services (ACDS) more online + Service Provider Council(s) share information and ensure families know of the range of services

 

Ideas to Discuss

·         Reverse the process of how services are designed and funded. Start with what families and individuals know about needs.

·         Government staff (e.g., Client Service Coordinators) need to have knowledge of people with disabilities gained from direct (front line or family) experience, not just textbooks.

·         Take a holistic approach to supporting individuals – shared funding for people with multiple needs coming from health, mental health, PDD, etc. in proportion to their needs in those areas.

·         Look at new ways to fund programs. Knock down silos. Avoid duplication of services.

·         Start from the Minister of Disabilities. Eliminate gaps.

·         Funding that rewards services that foster independence from, not dependence on systems of service.

·         Agency should present to the funding Review Team directly without the Client Service Coordinator acting as a go-between. Reason #1: The CSC cannot give additional examples that explain what the needs are because CSC does not have the experience with the client. Reason #2: The CSC has a role in managing costs to reduce spending (conflict of interest).

·         Seniors with developmental disabilities need extra support that is knowledgeable about the issues.

·         One service: birth to death. No more transitions.

·         Whole person: needs/strengths approach.

·         Funding should be available to choose family members to provide care at home.

·         Have family-managed supports as an option.

·         Deciding where someone should live and with whom should not be based on slots open. People should have a say in whether they want to live together and where they want to live (with a say/support from family, staff who know them, landlords, PDD and home care if relevant). Give people control over who is their roommate, not just fill a space in group homes.

·         Think in terms of potential – resources, economy, natural part of community.

·         Increase/support/foster self-advocacy.

·         Spend smarter – look at enhancing funding not cutting services.

 

Feedback Loop & Communication

·         Good communication

·         Provincial communication

·         Better communication between government and PDD and agencies and clients.

·         Effective sharing of information between agencies.

·         Open communication from government to agencies to staff to clients and in the other direction as well.

·         Two-way feedback, user-led feedback. (My Life Personal Outcomes Index (POI) is “almost there” though so systematic that it arguably reduces feedback into rote and potentially inaccurate responses.)

·         Bottom up.

·         Unexpected outcomes & evaluations lead to a feedback loop or cycle.

·         Start with today’s meeting. Take ideas to as many stakeholders as possible. Share with all levels of government to create “a future by the people for the people.”

·         People need to know how SIS and the My Life Personal Outcomes Index will be used and have the choice of whether to participate or not.

·         People need a copy of their own My Life Personal Outcome Index responses so they can share them with staff/agencies to guide support improvements. People also need support to understand the questions and the opportunity to tell their story, not just record one-word answers. People need an opportunity to say “I don’t know” as an answer.

·         There need to be clear connections between measures (SIS, POI, etc.) and what happens as a result (e.g., cuts to community access).

·         Government statements based on measures (SIS, POI) need to make sense, not be so broad.

·         Transparency – what are our rights and available resources?

·         Clarification around expectations – more dialogue about outcomes, especially prior to them being implemented and expected.

·         Clearly define roles and responsibilities of government, service providers, families/individuals.

·         Legislate book of available service

·         Celebrate success stories of true collaboration with media and t-shirts.

·         Creating a PowerPoint showing the government that people with disabilities are people, too.

 

Build Trust

·         Relationships make a strong community.

·         Honesty

·         Transparency

·         Transparency in process and decisions needed.

·         Roles and responsibilities need to be defined and respected

·         Dialogue with a broader group of stakeholders to understand ideas, build trust and develop open communication.

·         Active participation.

·         Open agenda (everything on the table for discussion).

·         Hearing

·         Mediator needed to work together.

·         We need to be not forced to fight each other for funding (silos).

·         Break vicious circle of mutual distrust caused by competition for money leading to agencies keeping what is not needed for fear of losing it in future when it is needed leading to government not trusting that agencies actually need what they ask for leading back to competition for money.

·         No fear of retribution if you say how you feel. People need to feel free to be open, not afraid.

·         Take away fear of working together with respect to funding, turf war. Support more client-centered funding.

·         Better understanding of client with joint committees of client and work, family. Not put down so they feel heard.

·         Recognize the social rights of citizenship.

·         Thoughtful implementation of new ideas.

·         Have accountability at all levels.

·         Decision makers experience life/reality

 

Advocacy and Public Awareness

·         To build community acceptance, we must engage media, PDD and government, other funders (health, police), agency staff and other community members. People with disabilities need to step up and be heard.

·         Collective impact

·         Advocate for an open and welcoming community where people can access all [community] services with required supports. Expand our circles; include people with disabilities in all public programs (vs. segregated services).

·         Build society in which people’s contributions are valued. Build community, not just partition people off to Human Services.

·         Human Services changing stereotypes and moving society to positive [views] and facilitating people with disabilities to do this and tell their stories.

·         Share stories that make people think differently!

·         Educate community on the potential of people with disabilities

·         Promoting abilities of individuals NOT disabilities. Promotion of positive strengths.

·         School presentations

·         Community forums and social media to increase awareness.

·         More rallies in communities. More TV coverage. Access.

·         Tangible steps

·         Education + Awareness creates “culture shift.”

·         Awareness – “Light It Up Blue” (LIUB) campaign on autism as a model for how to raise awareness. http://www.lightitupblue.org/Markslist/home.do

·         “Roots of empathy” model to build a more caring, peaceful, civil society. http://www.rootsofempathy.org/

·         Inclusion creates awareness. Diversity is normal.

·         Services should offer involvement in the community, meeting and interacting with the community every day.

·         Public awareness - does the general public understand PDD services?

·         We need to educate the community to understand the appropriate steps to take if things go wrong and support workers are not there to de-stress the person with disabilities. (Calling the police is not the answer.) You can’t be sensitive to what you don’t know.

·         Increase the community capacity to support people with disabilities.

·         Don’t frame it as a disability services issue. Think about it as a community issue.

·         Educate on the “Moore ruling” (right of students with learning disabilities to receive an education that allows them to develop their full potential. See http://www.ldao.ca/educational-implications-of-recent-supreme-court-ruling/) - tools for advocacy.

·         Lobby/advocate for subsidized child care spaces to allow affordable child care for parents with disabilities and parents/families in poverty.

·         Volunteers taking turns providing child care for parents with disabilities

·         Need to invest time and energy into developing community connections, employment opportunities, etc.

 

Focus on Employment

·         Employment – economic argument is the potential payoff for the whole community.

·         Mandate employment agencies to assist people with disabilities to obtain employment.

·         Focus on employment – this educates and influences so many circles.

·         Educate prospective employers.

·         Engage corporations. Roles: training, jobs, volunteerism, financial support.

·         Partnerships need to be promoted with large employers, government, etc.

·         More programs that bring together private companies with funding sources to provide employment opportunities for persons with disabilities.