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Envisioning our Future

August 13, 2013 – Calgary community discussion on supports for people with disabilities.

Summary

Envisioning our Future

August 13, 2013 – Calgary community discussion on supports for people with disabilities.

Executive Summary

2013 has been a year of dramatic change in Alberta for people with disabilities, particularly developmental disabilities. A number of substantial change initiatives have been underway for a number of years. Then, with the spring Alberta Budget, a number of these changes were drastically changed and others accelerated.

As the community has reacted to the changes, it has also grappled with an understanding of what the changes in programs and policies say about the underlying values.

The questions that have been lost in the conversation relate to values: quality of life, choice and community.

“Envisioning the Future” was a day for a group of stakeholders with various roles in the community to come together and share ideas, beginning by forming a vision:

We all want a good life for people with disabilities that supports them to have choices and control, to contribute to their community based on their individual gifts and to have warm, supportive and loving relationships with those around them.

Changing society is a big job and we all have a role to play. Government cannot achieve this vision on its own; we must all work together and do our part. We have many ideas. There are many stories to tell and many ways to tell those stories.

The second purpose of the “Envisioning the Future” day of community discussion was to plan. The vision incorporated values of choice, control and contribution. The plan built on actions that stakeholders can undertake to shape a community that reflects the vision.

While intent on both open discussion and concrete plans, the day was just a starting point, with aspirations for more community discussion throughout the province to build on what the day began.

It was also important to have a broad range of the community at the table with a goal of ever-widening the circle – this is about community in the broadest sense. It was encouraging to see that 96% of participants who came together on August 13^th met someone they had never met before.

The possibilities from “Envisioning the Future” are exciting. We have a vision. We have plans. Now we need to roll up our sleeves and work together to turn those possibilities into reality.

TABLE OF CONTENTS

What took place – the day’s program                                                                3

      

Notes from the Discussion
Vision – What values are most important to us in our services,           5
our supports and our community?
       Full Lives                                                                                                5

              Uniqueness/Individuality Celebrated                                                       

              Valued and Accepted                                                                             6

              Community Connections                                                                        

              Health, Choices, Transportation                                                            7

              Home, Caregiver Support                                                                      8

              Staff Training/Qualifications                                                                   

              Resources/Funding                                                                                9

              Responsive to change/Working together                                             10

              Outcomes, Communication                                                                    

              Government Legislation                                                                          

       Process – How do we want to work together to create/plan for
our services, our supports and our community?                                 11

              Stable Systems/Supports                                                                       

              Everyone at the Table                                                                             

              Who is involved

              How we work together                                                                         12

              What we need to do                                                                                

              Ideas to discuss                                                                                    13

              Feedback Loop and Communication                                                     

              Build Trust                                                                                            14

              Advocacy and Public Awareness                                                        15

              Focus on Employment

       Action -- What do we need to do over the next year to address
       key areas of concern?                                                                              16

              Ensure that new and varied voices are at the table                             16

              How do we encourage participation?                                                  16

              Clearly define roles and responsibilities for each stakeholder                

              Manage change and support through transition                                  18

              Find the best way to evaluate needs

              Advocate for the right government function and policy                      19

              Look at how we can support all people with disabilities

              Ensure people with disabilities have choices                                       20

              Engage all community members to own responsibility

              Develop a provincial communications strategy

What took place:

Individuals, families, disability service providers, representatives of the Alberta Human Services Ministry, and allies in other sectors (e.g., health, homelessness) participated. Although most participants were from the Calgary area, others came from Edmonton and Lethbridge.

Participants focused on three questions:

·         Vision – What values are most important to us in our services, our supports and our community? What’s our dream for people with disabilities?

·         Process – 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?

·         Action – What do we need to do over the next year to address key areas of concern?

Participants’ vision for the future and the process to make decisions and plans were documented and organized into themes. Key issues flowing from these themes were identified for small group discussion and action plans in the afternoon. Organized notes for all discussions are in the appendix.

Common Vision:  The best plan to realize the vision of ‘a good life for people with disabilities that includes choice, control and contributing to their community’ is one in which all stakeholders:

·         Have a voice in its creation

·         Know about and understand what will happen

·         Understand, share ownership and commitment to carry out their roles and responsibilities

While the vision of a good life is readily shared by all stakeholders, each stakeholder may define ‘a good life’ differently with expectations that vary for its potential and possibility. We feel that now is a good time to stop and share our understanding, our expectation and be part of a plan we can carry out together. We need a plan that lets us feel heard and lets us feel safe when we challenge ideas or decisions. There are many of us and we are ready to help make decisions and participate in the plan. We’re stronger together. 

Desired Process: We want to make sure people with disabilities are supported to realize the vision.

We want to work together (collaborate) to make decisions, plans and to carry out the plans. The discussions must be open and inclusive (e.g., use plain words to tell the truth). Stakeholders must feel that they have equal power and that they can disagree without risk.

Sometimes we will debate ideas and it adds value to the community to ensure there is the time for this debate. The decisions and plans that follow that debate will not only be better decisions, they’ll be more broadly supported. We also need the time to fully understand each stakeholder’s roles and responsibilities.

When we work together through this process, we will build better relationships with each other, including with government policy-makers and funders. We will build trust and strengthen the community for all of us. Our communication will become more consistent and productive and improve shared understanding.

Action Plans: Often meetings are seen as an end instead of a starting point for change. This is different. So we agreed to start work on a number of actions as soon as possible. Some people have committed to be part of the next steps and we will look for more people who want to help out. Here are the next steps we talked about:

·         Find new stakeholders that need to be part of solutions to problems because they are affected by what we decide, and we are affected by what they decide: Identify them and communicate why working with us will make it easier for them to reach their goals.

·         Define stakeholder roles, relationships and responsibilities. Then we can form the right committees with the right people to make the best decisions and plans, and figure out the best ways to get input and communicate.

·         Manage change and support each other during transitions. We need to set new rules for making decisions and plans that help us build new trusting relationships with each other instead of fighting each other. Then people will feel free to speak and act honestly. We will feel we are all on the same side.

·         Use the best way to identify people’s needs. People do not understand the Supports Intensity Scale (SIS) and do not know if it is the best tool to identify people’s needs. The first step is for PDD to hold information sessions on SIS for staff, families and individuals. Then we can say what (if anything) is missing and the best way to find out. We will also advocate for an ombudsman for people with disabilities to ensure their voice is heard in making decisions about needs and support.

·         Make sure government has the right rules (policies) to realize the vision. We will gather stakeholders (including government partners) to talk about whether current laws and rules give the best support to the vision we share. We will research other laws and their impact. We may advocate for new laws that protect the rights of people with disabilities better. We will identify other groups working on the same things to partner with. We will find ways to measure progress or success in making life better for people with disabilities.

·         Change community attitudes so that community members feel responsible for ensuring that people with disabilities have a good life. This group will meet once a month, starting Thursday, September 12, 2013, 1:30 – 3:30 pm at 219 – 18 Street SE.  The group will first create Terms of Reference and a Mission Statement. The next step is to identify other groups with the same goals, then link and work together with them to have a stronger voice.

·         Develop a communication strategy to support the vision, process and action plans so that we can respond quickly and effectively. This group will meet before the end of September to create Terms of Reference and start to make a strategic plan that defines the who, what, when, where and how of communicating.

 

Notes from Group Discussions

Vision – What values are most important to us in our services, our supports and our community? What’s our dream for people with disabilities?

Full Lives

·         A society in which persons all across the ability spectrum are fully valued as citizens, as change agents and as contributors to society, and have access to the resources needed to realize their dreams.

·         Supported to achieve full potential and live full lives.

·         All people should have easy access to as much or as little support needed to live a full life.

·         Individuals are free and independent with supports that are needed

·         Adults with disabilities are able to live lives that are “valuable” and that they have the supports (staff, etc.) to live these lives

·         Live as independently as possible in your community!

·         Live the same as people without disabilities (i.e., meaningful work, meaningful social life, and meaningful accommodations) with safety and security

·         Good life – they have their own place, marry, drive a car, are employed. Independent, same as their older brother.

·         To be able to love whomever they choose to love without fear and discrimination.

·         Quality of life – 2

·         Quality of life for men and women we support

·         Good quality of life – meaningful and authentic, reasonable AISH.

·         To be able to afford a good quality of life.

·         Go on holidays.

·         Access to the good things of life is not determined by ability or funding.

·         Healing

·         More effort to find employment

·         Citizenship

·         Active role in government

·         Participation

·         Advocacy

·         Citizenship and universal design of physical environments and programmes—a non-segregated life.

·         Vision: We need to work ourselves out of a job—only way for individuals to live full lives.

·         Vision: Service providers not having ownership – self-preservation – systems/services to maintain operations.

·         Freedom from fear; no worries for the future.

·         Security

·         A liveable income that allows for full participation in community.

Uniqueness/Individuality Celebrated

·         Individuality

·         Value of each person as an individual.

·         Seen as unique but not labeled as different.

·         Remove IQ level and replace it with what can we do to help you out.

·         People receive support based on their needs, not just on IQ. Support based on functional assessment.

·         Respected in all their uniqueness.

·         Sense of pride

·         Celebration of diversity

Valued and Accepted

·         People valued as people, not defined by disability.

·         Accepting and celebrating people without judgement.

·         Elimination of prejudice and being judgemental.

·         Belong in community with friends in community.

·         Recognize the contribution each person makes to the community.

·         Individuals are valued as leaders and help raise families and communities.

·         Free to pursue one’s own goals unbound by expectations of growth and productivity.

·         People are accepted and valued in the community with opportunities to pursue what they want. They have a life that is meaningful to them.

·         Being supported and valued across the life span 24/7.

·         People with disabilities are members of the community.

·         Respect and Dignity

·         Respect

·         Dignity – 2

·         Respect, dignity and being accepted.

·         Focus on people – dignity and choice

·         Have meaningful employment

·         Equal employment opportunities

·         Equity of opportunity

·         Justice, not just equality

·         The community is created in a way that allows all people, regardless of differences, to participate in all aspects of society.

·         Acceptance of others with their challenges and gifts

·         Society should have high expectations of what a person can achieve (even if what they achieve looks different).

·         Awareness and education

·         What’s the role of the whole community?

·         Community that is compassionate toward people who are different.

·         Real acceptance in the community

·         Inclusion, acceptance, no barriers to participation

·         Inclusiveness

·         Inclusion

·         Full inclusion and acceptance

·         Disability services staff are valued by society

Community Connections

·         Broader community – everyone is looking after people with disabilities, starting with where they live in their neighbourhood. Natural supports.

·         Raising awareness with general public on how to support people with disabilities – natural supports and social inclusion.

·         The good life for people with disabilities is seen as the work and responsibility of all Calgarians.

·         Natural connections.

·         Circles of support (PLAN Calgary); community involvement in communities of interest

·         Community inclusion

·         Friends – connections to others who are like him/her, and places to meet those people/friends.

·         Have good friendships.

·         People have supporters, family and friends that are supportive.

·         Integration of individuals into the community to the greatest extent possible.

·         Community inclusion is different for everyone and person-directed.

·         Inclusion regardless of people’s disability or weakness or background.

·         Community inclusion – a society with knowledge and understanding

·         Lives in community

Health

·         Health/Wellness, such as programs for weight loss or exercise.

·         Health care needs met in a timely manner. No extensive wait lists.

·         Better access to the health system.

Choices

·         Greater/easier access to services. Services are determined based on personal consultation.

·         Ideas, opinions and choices of persons with disabilities are considered first.

·         Choices – have the same choices as everyone else.

·         People have hopes, dreams and expectations for themselves, not told it is one way.

·         Real choice based on each person’s values, interests and desires, not just what is available.

·         People with disabilities able to choose their own path in life.

·         People with disabilities empowered to make choices and decisions about the supports they need.

·         Living lives they choose with the supports available to reach their goals

·         Sensible service planning.

·         Opportunity to be spontaneous.

·         Freedom to choose who provides your support.

·         Choice of agency

·         Choice in services

·         People need to choose services they want and have services that support this choice.

·         Choice(s) – 2

·         Self-determination

·         Freedom to make decisions (self-determination)

·         Person-directed

Transportation

·         Mobility

·         Accessibility

·         Fully accessible community

·         To be able to travel anywhere in the world without hassle.

·         Transportation

·         Transportation very important!

Home

·         People can age in place.

·         The ability to choose NOT to be put away.

·         Freedom to choose where you live.

·         More choice in residential situations

·         Housing that is affordable and accessible in every way. The choice to live where you want all over the city.

·         To be able to choose and afford a safe and accessible home and community.

·         Safety – the right to a safe place and care.

Caregiver Support

·         It’s an art how to deal with situations. Values of empathy lead to independence.

·         Environment that helps independence as much as possible.

·         Sense of purpose.

·         Put Love and Service back into support.

·         Service focused on people, not “need” or “disability.”

·         Staff should be respectful and act like they like what they do (not just that they are there for a paycheque).

·         Authentic

·         Ask what “support” means [looks like] to the individual.

·         Care for individuals and their whole support system.

·         Lifetime care – no disruptions based on age

·         Service provision respects individual needs.

·         Agencies live their values.

·         Staff understand their role and responsibilities.

·         Better care.

·         Supports tailored to each individual, not the individual having to pick from a pre-determined “menu” of options.

·         Periodic assessment of programs to make sure they are still appropriate.

·         To understand a person, we need many approaches, not just one tool (SIS). Lives are too complex to be captured by one tool.

·         The ability to have the supports you need when you have a child, disabled family member or older person (e.g., parent) living with you.

·         Increased personal and technical supports in post-secondary institutions.

Staff Training/Qualifications

·         Staff should have background and qualifications to do this work. If they don’t understand, it leads to behaviours and prescribing more medication.

·         The field needs to be seen as a profession, not just a job. MRU closed its program and that makes it harder.

·         Education reduces ignorance and increases access.

·         More workers who are knowledgeable in working with both children and adults with disabilities.

·         Staff need skills plus support.

·         Disability study classes to be included in all programs in colleges and universities.

·         People with unique and challenging behaviour need to have the right supports.

Resources/Funding

Disability Service Workers

·         Create better work situations for staff. Happy staff = Happy clients.

·         Pay workers well with better benefits to help lower turnover.

·         More pay for support workers.

·         Fair wage for disability services staff.

·         Funding to ensure stability of staff/care workers.

·         Better resources - Human Resources, Education, Employment for families.

·         Higher level of funding for education of service providers to provide knowledgeable supports

·         Funding for education for providers

People with Disabilities

·         Everyone has fair access to what they need.

·         People should get the support that they need.

·         People should have supports needed.

·         Funding is NOT based on a textbook definition.

·         Sustainable, long term services and funding

·         Sustainability of programs/services so not dependent on varying economic circumstances.

·         Stability (constant roller coaster)

·         Funding available to meet needs and interests beyond the basics (community access).

·         AISH with an inflation adjustment mechanism.

·         Raise AISH every year.

·         Fairness

·         Availability of a full range of services and smooth transitions between services from children’s services to adult services and seniors.

·         Our province has adequate resources so people with disabilities are able to receive the supports they need and want.

·         Planning on how to stop the cuts.

·         People with disabilities receive the care and support they need.

·         Remove the silos. Resources follow the person, not trap them.

Responsive to Change

·         Flexibility in services (things change!).

·         Flexibility in support to meet the changes that occur over time.

·         Flexibility - 2

·         Quick PDD responsiveness to changing support needs.

·         Honest and thoughtful change.

·         People need choices. They need to be able to continue with services when they are working and change when it is needed.

Working Together

·         Partnerships

·         Trust

·         Honesty

·         Honesty between government and agencies.

·         Listening to each other

·         Respect – for all people, all ideas, skills, experience, process, input and results.

·         Asking people what they need and what works for them.

·         Inclusion of ideas

·         Working together and making life better.

·         Creative financing – working together with builders and owners.

·         Government is a partner with community. We work together to address complex issues.

·         Systems collaborate.

·         Collaborate between programs (e.g., education and social supports) for “wholistic” services

·         Collaboration not animosity between agencies and government.

·         Agencies that collaborate.

·         Collaboration of all to help individuals reach full potential.

·         Children’s services need to inform PDD of who will be turning 18 well ahead of time.

·         Transition supports for youth 18+

·         Across ages and places (lifespan)

·         Having a disability doesn’t stop or interrupt the flow of service delivery. Needs can be met with the same ease, without redirection.

·         Brokerage (resource centres)

·         Better connects between service providers and all stakeholders.

·         More client-directed focus in policy and training

·         Collective power with each other (not power over others)

·         Concerns can be shared without fear of “backlash.”

·         Willing to speak up and advocate. Better relationship between family and staff.

·         Better relationship with provincial government.

Outcomes

·         Equity of outcome

·         People need to have fun—it is not always about outcomes. This isn’t the army.

·         Embrace failures.

Communication

·         People falling through cracks because misdiagnosed initially, accident, wasn’t listened to, lack of communication and staff turnover led to missed job opportunities.

·         Using everyday language.

·         Value statements should use everyday language, not disability language.

·         No jargon.

·         Better communication between PDD and agencies.

·         Families have access to information they need.

·         Communication – no one should be constantly worried about supports.

·         Self-Advocacy Summit once a year – better communication among self-advocates across Alberta.

Government/Legislation

·         Canadians with Disabilities Act legislation like the Americans with Disabilities Act

·         Individuals with Disabilities Education Act

·         Common “Ministry of Disabilities”

·         One department for services across the service spectrum and across ages.

·         Democracy

·         Mandatory training in the field for politicians.

Process – 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.

Action – What do we need to do over the next year to address key areas of concern?

Ensure that new and varied voices are part of the decision-making process.

Who are the new voices?

·         Alberta Health Services

·         Municipalities and Infrastructure

·         Council of Canadians

·         Federal/National CDA(?)

·         Builders and Developers

·         Chamber of Commerce

·         Families/Youth & Children

·         School Boards

·         Self-advocacy groups and organizations

·         Service providers

How do we encourage participation (get them to join us)?

·         Identify what’s in it for them.

·         Develop a marketing strategy.

o   Research trends and successes around the world

o   Make group accessible with universal design and an age-friendly approach

o   Identify “quick wins”

o   Find natural allies in healthcare (e.g., nurses)

o   Connect 1-to-1 with the Calgary Caucus (MLAs)

o   Send information booklets to MLAs

o   Use civic camp forums – Ask “where do you stand?”

·         Explore and use best practices in collaboration (working together)

·         Host Disability Think Tank on best practices

·         Create baby steps

o   Municipal

o   Voices heard

o   Provincial platform for political party conventions

o   Host series of forums to bring people together

Clearly define roles and responsibilities for each stakeholder group.

Roles around decisions and supports for people with developmental disabilities are changing. In the past, government was responsible for funding support services and for financial accountability. Agencies talked with individuals and families to identify goals and needed or desired supports, and prepared funding proposals for services that they then delivered and accounted for. Individuals and families identified their vision for their future and what support they needed to make it happen, at least yearly with feedback to agencies in between.

Now, government intends to add need identification and support planning conversations with individuals and families to their funding role. Families in family-managed supports often employ service staff and manage funding. Agencies and their staff will soon develop service plans based on funding and support plans developed by government. These service plans will involve additional talks with individuals and families. Staff will continue to deliver services and account for activities, money spent and outcomes.

The decisions to change roles and responsibilities have sometimes seemingly been made by a single stakeholder group—government—without considering the abilities, experience and desires of other stakeholder groups. Many questions need answers.

·         What is the driver or motivator behind these changes? Do all stakeholders agree with them?

·         Who should be making decisions about what? (Who is driving what bus?)

·         Who should define the roles and responsibilities of each stakeholder group? Is this government’s role? What say do other stakeholder groups have—what is negotiable and what is not?

·         Who is accountable to whom and in what ways?

Now is a good time to work together before government plans are too far along to change.

Action Plan

1.    Stakeholder groups need to sit down together to redefine our relationship to each other so that there is shared accountability for the vision. All agree that funding and support must be based on need and that support must result in good outcomes to show money is well spent. How this is best achieved (including decisions about roles and responsibilities) is not agreed. Until this happens, plans for system transformation will continue to meet roadblocks. (We all need to be on the bus for it to go smoothly.) Issues to be addressed in these stakeholder meetings include the following:

a.    What measures will give us an accurate picture of a person’s needs?

b.    Is there a conflict of interest between the funder role and the needs assessor role? If there is little money to go around, will government SIS interviewers feel pressure to see fewer needs? Will PDD staff decide what an individual’s services look like and dictate who provides service?

c.    Are the changes consistent with legislation and policy?

d.    What roles do each of the stakeholders excel at and feel comfortable with? Government? Families? Service providers? Individuals? Broader community?

e.    What roles and responsibilities are most efficiently handled by a particular stakeholder group or groups?

f.     Is it beneficial to have other stakeholders involved in activities that they are not responsible for in order to have a better understanding of their own roles and the “big picture”?

g.    What measures will give an accurate picture (and ensure accountability) of action, money spent and outcomes?

h.    Who is accountable to whom and in what ways (e.g., contracting relationships)?

2.    Develop cross-stakeholder committees to identify roles and responsibilities related to various issues above (e.g., Contract Advisory Committee). Ensure transparency in how things will work.

3.    Develop guidelines for communication so that all stakeholder groups can feel they know what is going on, how to fulfill their roles and responsibilities, and what flexibility there is to make decisions or take actions (e.g., flexible funding to seize the moment).

Related Research

Disability Policy in Alberta: An initial exploration of transition implications http://www.threesource.ca/documents/February2011/disability_policy.pdf

Manage change and support each other during transitions.

In order to manage the change and support each other, we all need to understand the change. There is a need for PDD to communicate clearly about what the changes are, who they affect, when it will happen, how it will happen, etc. Here are some questions that need answers.

·         What is the PDD transformation?

·         Why are we making these changes (e.g., SIS)?

·         What will the changes mean for service providers? For families? For clients? For other government departments?

·         How do we ensure that the “true” message is heard? (E.g., Identify the confusion. Clarify perceptions. Get feedback on the message.)

·         What is negotiable and what is not? Put it in writing.

The trust relationship between PDD/government and other stakeholder groups (service providers, families, individuals) has broken down. PDD communication has not been consistent, transparent or honest. Many people feel that if they point out a problem, they will suffer for it. They want to be partners in solving problems, but can’t because of the power difference. To rebuild trust, we need to create a trusted mechanism for people to identify their concerns while feeling safe and heard. We need to bring stakeholders to the table to work together (collaborate) to create a written Transformation Action Plan that makes sense to everyone as a good idea.

Action Plan

1.    Take the information from today’s community dialogue to PDD: Here’s where we are at. This is what we need to understand/know. Here are our needs/concerns.

2.    Begin the process to rebuild relationships and develop clear communications about the transformation.

3.    Build an action plan together (all stakeholders including government) that considers implications.

Find the best way to evaluate the needs of individuals.

As support need replaces IQ as the basis of access to resources, the community must advocate for more resources to go around. The Supports Intensity Scale (SIS) is an internationally-used tool designed to help understand the range of supports people would need to carry out common life activities successfully in the community. People have a lot of questions about SIS and how it is used. For example,

·         Are mental health needs included? Yes, in SIS and in supplemental (extra) questions.

·         What is the individual’s role? The person answers SIS questions along with supporters.

·         At what point does the plan connect to the funding? SIS helps give a general range of funding and the plan indicates the funding required for support Once the plan is developed, the service providers come together to figure out how to carry out the plan.

·         What if needs change? The SIS may need to be redone.

·         What if you don’t agree with the picture SIS gives of the person’s support needs? SIS can be reviewed with the Client Service Coordinator. Or you can appeal at any point.

Staff, individuals and families need better information and a chance to ask questions and get clear answers.

Policy is coming out that SIS is not the only means of assessing needs, but just part of the assessment of people’s needs. The result of the process with the trained Client Service Coordinator interviewer and the person’s network is called “My Support Plan.” PDD staff will be part of the planning process. The service planning process may change. PDD is working on a template as a guide. The process will be the same across the province.

Action Plan

1.    Get PDD to hold information sessions on SIS for staff, families and individuals.

2.    Advocate for an ombudsman for people with disabilities to ensure their voice is heard.

Advocate for the right government function and policy. (Protection of Rights laws)

“Big Picture” Goals

·         Policy/message driven, defined and delivered by people with disabilities

·         Shift to lifespan view

·         Eliminate “silo” funding (based on age group or disability type)

·         Engage the opposition

Long-term Goals

·         Develop an Alberta Disabilities Act/Canadian Disabilities Act.

·         Create a Ministry dedicated only to Disabilities with a Minister of Disabilities who has Deputy Ministers who handle education and support services.

·         Establish lines of communication with the provincial government.

Action Plan

1.    Gather together cross-disability stakeholders for a meeting within 2 months.

·         People with disabilities

·         Families/parents/guardians/support

·         Disability-serving organizations (cross-disability)

·         Seniors?

·         Human Services Ministry (Brenda Lee Doyle)? 

2.    Identify and come to group consensus on key topics/concerns about government function/policy and protection of rights.

3.    Research existing legislation and data (e.g., Canadian Disabilities Act, Americans with Disabilities Act and its impact on people with disabilities).

a.    http://www.disabilitypolicyalliance.ca/resources/reports/canadians-with-disabilities-act.html

b.    http://www.ccdonline.ca/en/socialpolicy/fda

c.    Ontarians with Disabilities Act http://www.canlii.ca/en/on/laws/stat/so-2001-c-32/latest/so-2001-c-32.html

4.    Define how we will measure progress or success. Identify strategies for gathering data that do not exist.

5.    Identify groups that may already be working on this. How can we join forces?

6.    Meet with identified government partners. Use the Social Policy Framework to start these talks.

Look at how we can support all people with disabilities.

Family members talked about their experiences getting services. Many people with disabilities are on AISH, which needs annual automatic cost of living increases based on COLA.

When looking at resources, here is what needs to be considered:

·         PDD funding being client-directed

·         Health care/Home care and long term care

·         Family should not be relied upon as a resource

·         Trained and appropriately trained staff as a resource

·         An effective and responsive assessment system

·         Stable housing

Action Plan

1.    Complete an analysis of current housing models; then, develop different housing models.

2.    All parties should be actively involved in the assessment process with individuals:

·         Guardians

·         Agencies

·         Network

·         Staff

Ensure people with disabilities have choices that give them a good life, including the right to love.

People with disabilities get lost in the process because the service provider leads service. Avoid tunnel vision.

·         Ability to make choice

·         Have groups that come together (e.g., outreach(?) group)

·         Ongoing funding secure

·         Family-managed support as an option

·         Well-trained staff leads to best practices

·         Consumers guide service.

·         Equivalent services in other provinces

·         Diversity of organizations, not just big mega-agencies

·         Need to convince funder that small agencies can provide valuable, unique services

o   Diverse services

o   Respect cultural differences

*Include people with disabilities as part of organizations so they help guide service for everyone.

Engage all community members to own responsibility for helping to create a good life for people with disabilities.

A “good life” means having

·         a safe home

·         relationships

·         financial security (enough money to live on without worry for the future)

·         citizenship

·         learning all the time

·         independence (autonomy)

·         the right to choose (self-determination)

·         the right to get help with choices from a co-guardian or co-decision-maker.

“Big Picture” Goals

·         Develop embedded services. This means that employers, schools and other community groups would already have people who support new members with accommodations as needed. Service providers would help the embedded services or person with disabilities to smooth the way only if needed.

·         Define and create a fully-inclusive environment.

·         Change society’s attitude toward disabilities (e.g., employers, schools, clubs).

·         Engage community. Acknowledge the impact of low income. Everyone is responsible for safety.

·         Value people as whole persons, not as people with labels.

Action Plan

·         Meet once a month on Thursday afternoon, starting Thursday, September 12, 2013, 1:30 – 3:30 pm at 219 – 18 Street SE.

·         Create a “Terms of Reference” (what we will do).

·         Create a Mission Statement (what we want)

·         Identify other groups with the same goals. Link and work together with them to save time and have a stronger voice.

Develop a provincial communications strategy.

We do not always communicate with each other well. There are funders who feel they are collaborating yet people feel they were not part. There is a difference between communication (information sharing) after a decision, consultation before a decision and collaboration in making a decision. (See http://kkbiersdorff.wordpress.com/2013/06/18/consultation-and-collaboration-in-change-management/ for definitions and a discussion of these terms.) Often what government sees as consultation looks to others like communication.

If government committed to collaboration, decisions would not be made before all the issues have been discussed and before lack of consensus among stakeholders. The evidence that there is a lack of true collaboration shows in the inconsistencies from one information session to the next and from region to region.

A first step is to ensure shared meanings of the terms we use.

Within the service provider network, we need to be able to respond quickly to what appears in the media about people with disabilities as a basic advocacy role. Currently, we are disconnected and need lots of approvals before we can respond. By then it is too late

We have different messages going to different audiences, which creates confusion around the messages. Some agencies don't share a lot with their staff while others do. We need to share information directly. Transparency is needed.

For example, we need to have someone responding to media misrepresentations of our population. We need to agree in advance on the messages and responses to be able to respond quickly. Right now there is a void. We should create position papers that are the basis of the responses. Messages have to be consistent, professional, available fast and talk the same language as media. We abdicate our power when we are not prepared to communicate. Having messages created pro-actively according to a plan creates a go-to resource for communicators and the media. The group doing the communicating doesn't need to be big or formally represent the majority of people, but must be responsive and consistent with what others would say. Start with a base of a few facts and agreed principles.

Connecting with colleagues across the province is important. Whose message do we want to communicate? All stakeholders or just one or two groups? Communication flow between government and community stakeholders needs to be sorted.

Working together with government on communication would help create transparency and rebuild trust. If the goal of the plan involves communication related to the government agenda (e.g., community employment), government would hopefully see value in participating with us in this communication to stakeholders.

We need compelling stories and a narrative arc in our messaging. This will help people to care. We need why communities are better, more healthful and vibrant places when people with developmental disabilities are part of them. The language needs to be accessible and inclusive. We need to think about what the reader needs, not the writer’s vocabulary or jargon. Do not be divisive. Stay focused on the common vision. Challenges around politically correct language need to be sorted to have clear communication that people understand. We need to take leadership and set the example of respectful language.

Plan Tactics

1.    Create the summary and identify the common vision from today.

2.    Use it to create the foundation of a plan that can be used to respond quickly with short, plain statements.

3.    Build a mechanism to gather a broad range of stories to illustrate our messages (e.g., value of people with disabilities to the community and what support from family, staff, funding and/or community members makes that happen). Put a human face on the issues.

The communication plan should be strategic, consistent, communicate an understanding to all the different stakeholders, and have measurable results.

Action Plan

1.    Hold a cross-stakeholder, cross-Alberta meeting before the end of September to

a.    Set Terms of Reference (who we are and what we do)

b.    Create a communication strategy based on a common vision (or at least start one). The communication strategy would identify agreed-upon

·         Communication goals, short-term and long-term objectives - why

·         Target audiences (and key allies) - who

·         Timelines – when

·         Key messages – what

·         Materials and activities (tactics) – how

·         Method of communication (e.g., media, social media, meetings, flyers) – where

·         How you will know you reached your goals and objectives effectively (evaluation method)

c.    This meeting (or other method) could map the current communication links. How are people finding out about things? Community meetings and community consultations, letters from government, letters/email between individuals, social media? What has been the timing of communication with respect to consultations and decisions?

2.    Develop the plan by December 1 and implement the tactics beginning November/December.