Envisioning Our Future EXECUTIVE SUMMARY and Notes

7/27/2019 Envisioning Our Future EXECUTIVE SUMMARY and Notes

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Envisioning our FutureAugu st 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, particularlydevelopmental disabilities. A number of substantial change initiatives have been underway for anumber of years. Then, with the spring Alberta Budget, a number of these changes weredrastically changed and others accelerated.

As the community has reacted to the changes, it has also grappled with an understanding ofwhat 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 andcommunity.

Envisioning the Future was a day for a group of stakeholders with various roles in thecommunity 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 choicesand control, to contribute to their community based on their individual gifts and to havewarm, 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 thisvision on its own; we must all work together and do our part. We have many ideas. There aremany stories to tell and many ways to tellthose stories.

The second purpose of the Envisioning theFuture day of community discussion was to

plan. The vision incorporated values of choice,control and contribution. The plan built onactions that stakeholders can undertake toshape a community that reflects the vision.

While intent on both open discussion andconcrete plans, the day was just a startingpoint, with aspirations for more communitydiscussion throughout the province to build onwhat the day began.

It was also important to have a broad range ofthe community at the table with a goal of ever-

widening the circle this is about communityin the broadest sense. It was encouraging to see that 96% of participants who came together on

August 13th 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.


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TABLE OF CONTENTS

What took placethe days program 3

Notes from the Discussion

VisionWhat values are mo st imp ortant to us in our services, 5our supports and our communi ty?

Full Lives 5Uniqueness/Individuality CelebratedValued and Accepted 6Community ConnectionsHealth, Choices, Transportation 7Home, Caregiver Support 8Staff Training/QualificationsResources/Funding 9Responsive to change/Working together 10Outcomes, Communication

Government LegislationProcess How do w e want to work to gether to create/plan forour serv ices, our supports and our communi ty? 11

Stable Systems/SupportsEveryone at the TableWho is involvedHow we work together 12What we need to doIdeas to discuss 13Feedback Loop and CommunicationBuild Trust 14

Advocacy and Public Awareness 15

Focus on EmploymentAction -- What do we need to d o over the next year to addresskey areas of co ncern? 16

Ensure that new and varied voices are at the table 16How do we encourage participation? 16Clearly define roles and responsibilities for each stakeholderManage change and support through transition 18Find the best way to evaluate needs

Advocate for the right government function and policy 19Look at how we can support allpeople with disabilitiesEnsure people with disabilities have choices 20Engage all community members to own responsibility

Develop a provincial communications strategySurvey ResultsPost-event surv ey of part ic ipants 23


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TrustCommitment

CommunicationStable System

Caring Community

VisionDecisions

Plans

Open

Respectful

Collaboration

GovernmentIndividuals

FamiliesServices

What took place:

Individuals, families, disability service providers, representatives of the Alberta Human ServicesMinistry, and allies in other sectors (e.g., health, homelessness) participated. Although mostparticipants 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 ourcommunity? Whats our dream for people with disabilities?

Process How do we want to work together to create/plan for our services, our supportsand 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 weredocumented and organized into themes. Key issues flowing from these themes were identifiedfor small group discussion and action plans in the afternoon. Organized notes for all discussionsare 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 allstakeholders:

Have a voice in its creation

Know about and understand what will happen

Understand, share ownership and commitment to carry out their roles andresponsibilities

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

and participate in the plan. Were stronger together.Desired Process: We want to make sure people withdisabilities are supported to realize the vision. Wewant to work together (collaborate) to make decisions,plans and to carry out the plans. The discussions mustbe open and inclusive (e.g., use plain words to tell thetruth). Stakeholders must feel that they have equal powerand that they can disagree without risk.

Sometimes we will debate ideas and it adds value to thecommunity to ensure there is the time for this debate. Thedecisions and plans that follow that debate will not only be better

decisions, theyll be more broadly supported. We also need the time tofully understand each stakeholders roles and responsibilities.

When we work together through this process, we will build betterrelationships with each other, including with government policy-makers and funders. We will build trust and strengthen thecommunity for all of us. Our communication will become moreconsistent and productive and improve shared understanding.

Action Plans: Often meetings are seen as an end instead of a


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starting point for change. This is different. So we agreed to start work on a number of actions assoon as possible. Some people have committed to be part of the next steps and we will look formore 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 areaffected 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 outthe best ways to get input and communicate.

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

Use the best way to identify peoples needs. People do not understand the SupportsIntensity Scale (SIS) and do not know if it is the best tool to identify peoples needs. Thefirst step is for PDD to hold information sessions on SIS for staff, families andindividuals. 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 voiceis heard in making decisions about needs and support.

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

Change community attitudes so that community members feel responsible for ensuringthat people with disabilities have a good life. This group will meet once a month, startingThursday, 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 identifyother groups with the same goals, then link and work together with them to have astronger voice.

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


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Notes from Group Discussions

Vision What values are most important to us in our services, our supports and our

community? Whats our dream for people with disabilities?

Full Lives

A society in which persons all across the ability spectrum are fully valued as citizens, aschange agents and as contributors to society, and have access to the resources neededto 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 fulllife.

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 thesupports (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 programmesa non-segregated life.

Vision: We need to work ourselves out of a jobonly way for individuals to live full lives.

Vision: Service providers not having ownership self-preservation systems/services tomaintain 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.


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People receive support based on their needs, not just on IQ. Support based onfunctional 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 ones own goals unbound by expectations of growth and productivity.

People are accepted and valued in the community with opportunities to pursue what theywant. 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, toparticipate 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 theyachieve looks different).

Awareness and education

Whats 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 societyCommunity Connections

Broader community everyone is looking after people with disabilities, starting withwhere 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 allCalgarians.


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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 thosepeople/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 peoples 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 personalconsultation.

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 persons values, interests and desires, not just what isavailable.

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

People with disabilities empowered to make choices and decisions about the supportsthey 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!


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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 youwant 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

Its 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 familymember 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 dont 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 andthat 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.


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Resources/Funding

Disabi l i ty 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 knowledgeablesupports

Funding for education for providers

People with Disabi l i t ies

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 economiccircumstances.

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 fromchildrens 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 areworking and change when it is needed.

Working Together

Partnerships

Trust

Honesty

Honesty between government and agencies.

Listening to each other


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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 wholisticservices

Collaboration not animosity between agencies and government.

Agencies that collaborate.

Collaboration of all to help individuals reach full potential.

Childrens 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 doesnt stop or interrupt the flow of service delivery. Needs can bemet 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 funit is not always about outcomes. This isnt the army.

Embrace failures.

Communication

People falling through cracks because misdiagnosed initially, accident, wasnt listenedto, 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.


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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 servenew people with existing dollars.

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

Foster flexibility.

Funding follows/belongs to the individual, not the government agency. Individualaccountability.

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 determininglevel 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. [Lets start over with everyone involved in decisions.]

People with and without disabilities working together to come up with services forspecific 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 inmoving the plan forward

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

Include alliances, coalitions, fearless leadership, community and allies from othersectors.

Representation

New: older voices

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


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Important to include diverse sizes of organizations, not just a few mega-agencies. Needfunders to know that small organizations can be very valuable and provide excellentservice.

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 stakeholderspoliticians, 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-centeredand by this we aint 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 cant work.

Develop mission & vision statement that everyone can commit to! Identify agreed-onbasics. 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 andPDD.

Develop an assessment process which includes the person, doctors and health careproviders, 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 homeaccess in a bed in a hospital hallway. Work on these issues with PDD, health, homecare, agencies, family, clients

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

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


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Ideas to Discuss

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

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

Take a holistic approach to supporting individuals shared funding for people withmultiple needs coming from health, mental health, PDD, etc. in proportion to their needsin 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 onsystems of service.

Agency should present to the funding Review Team directly without the Client ServiceCoordinator acting as a go-between. Reason #1: The CSC cannot give additionalexamples that explain what the needs are because CSC does not have the experiencewith 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 aboutthe 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 tolive (with a say/support from family, staff who know them, landlords, PDD and home careif relevant). Give people control over who is their roommate, not just fill a space in grouphomes.

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 otherdirection 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 andpotentially inaccurate responses.)

Bottom up.

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

Start with todays meeting. Take ideas to as many stakeholders as possible. Share withall 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 usedand have the choice of whether to participate or not.


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People need a copy of their own My Life Personal Outcome Index responses so theycan share them with staff/agencies to guide support improvements. People also needsupport to understand the questions and the opportunity to tell their story, not just recordone-word answers. People need an opportunity to say I dont know as an answer.

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

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

Transparency what are our rights and available resources?

Clarification around expectations more dialogue about outcomes, especially prior tothem 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 anddevelop 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 toagencies keeping what is not needed for fear of losing it in future when it is neededleading to government not trusting that agencies actually need what they ask for leadingback to competition for money.

No fear of retribution if you say how you feel. People need to feel free to be open, notafraid.

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

Better understanding of client with joint committees of client and work, family. Not putdown 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


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Advocacy and Public Awareness

To build community acceptance, we must engage media, PDD and government, otherfunders (health, police), agency staff and other community members. People withdisabilities 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 withdisabilities in all public programs (vs. segregated services).

Build society in which peoples contributions are valued. Build community, not justpartition people off to Human Services.

Human Services changing stereotypes and moving society to positive [views] andfacilitating 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.

AwarenessLight It Up Blue (LIUB) campaign on autism as a model for how to raiseawareness.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 thecommunity 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 thingsgo wrong and support workers are not there to de-stress the person with disabilities.(Calling the police is not the answer.) You cant be sensitive to what you dont know.

Increase the community capacity to support people with disabilities.

Dont 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 aneducation that allows them to develop their full potential. Seehttp://www.ldao.ca/educational-implications-of-recent-supreme-court-ruling/ ) - tools foradvocacy.

Lobby/advocate for subsidized child care spaces to allow affordable child care forparents 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, employmentopportunities, 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.
http://www.lightitupblue.org/Markslist/home.dohttp://www.lightitupblue.org/Markslist/home.dohttp://www.lightitupblue.org/Markslist/home.dohttp://www.rootsofempathy.org/http://www.rootsofempathy.org/http://www.ldao.ca/educational-implications-of-recent-supreme-court-ruling/http://www.ldao.ca/educational-implications-of-recent-supreme-court-ruling/http://www.ldao.ca/educational-implications-of-recent-supreme-court-ruling/http://www.rootsofempathy.org/http://www.lightitupblue.org/Markslist/home.do


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

More programs that bring together private companies with funding sources to provideemployment 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 whats in it for them.

Develop a marketing strategy.o Research trends and successes around the worldo Make group accessible with universal design and an age-friendly approacho Identify quick winso Find natural allies in healthcare (e.g., nurses)o Connect 1-to-1 with the Calgary Caucus (MLAs)o Send information booklets to MLAso Use civic camp forumsAsk where doyou stand?

Explore and use best practices in collaboration (working together)

Host Disability Think Tank on best practices

Create baby stepso Municipalo Voices heardo Provincial platform for political party conventionso 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. Inthe past, government was responsible for funding support services and for financialaccountability. Agencies talked with individuals and families to identify goals and needed ordesired supports, and prepared funding proposals for services that they then delivered andaccounted for. Individuals and families identified their vision for their future and what supportthey 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 withindividuals and families to their funding role. Families in family-managed supports often employ


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service staff and manage funding. Agencies and their staff will soon develop service plansbased on funding and support plans developed by government. These service plans will involveadditional talks with individuals and families. Staff will continue to deliver services and accountfor activities, money spent and outcomes.

The decisions to change roles and responsibilities have sometimes seemingly been made by a

single stakeholder groupgovernmentwithout considering the abilities, experience anddesires of other stakeholder groups. Many questions need answers.

What is the driver or motivator behind these changes? Do all stakeholders agree withthem?

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

Who should define the roles and responsibilities of each stakeholder group? Is thisgovernments role? What say do other stakeholder groups havewhat is negotiable andwhat 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 sothat there is shared accountability for the vision. All agree that funding and support must bebased 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 notagreed. 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 thesestakeholder meetings include the following:

a. What measures will give us an accurate picture of a persons 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 tosee fewer needs? Will PDD staff decide what an individuals 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 bigpicture?

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 howthings will work.

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

Related Research


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Disability Policy in Alberta: An initial exploration of transition implicationshttp://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 othergovernment departments?

How do we ensure that the true message is heard? (E.g., Identify the confusion. Clarifyperceptions. 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 (serviceproviders, 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 cant because of the power difference. Torebuild trust, we need to create a trusted mechanism for people to identify their concerns whilefeeling 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 todays community dialogue to PDD: Heres where we are at. Thisis what we need to understand/know. Here are our needs/concerns.

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

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 advocatefor more resources to go around. The Supports Intensity Scale (SIS) is an internationally-usedtool designed to help understand the range of supports people would need to carry out commonlife activities successfully in the community. People have a lot of questions about SIS and how itis used. For example,

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

What is the individuals 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 isdeveloped, 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 dont agree with the picture SIS gives of the persons support needs? SIScan 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 getclear answers.
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Policy is coming out that SIS is not the only means of assessing needs, but just part of theassessment of peoples needs. The result of the process with the trained Client ServiceCoordinator interviewer and the persons network is called My Support Plan. PDD staff will bepart of the planning process. The service planning process may change. PDD is working on atemplate as a guide. The process will be the same across the province.

Action Plan1. 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 hasDeputy 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.htmlb. http://www.ccdonline.ca/en/socialpolicy/fda c. Ontarians with Disabilities Acthttp://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 al lpeople with disabilities.

Family members talked about their experiences getting services. Many people with disabilitiesare on AISH, which needs annual automatic cost of living increases based on COLA.
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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. Avoidtunnel 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 serviceso Diverse serviceso 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 forpeople 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


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Develop embedded services. This means that employers, schools and other communitygroups would already have people who support new members with accommodations asneeded. Service providers would help the embedded services or person with disabilitiesto smooth the way only if needed.

Define and create a fully-inclusive environment.

Change societys attitude toward disabilities (e.g., employers, schools, clubs).

Engage community. Acknowledge the impact of low income. Everyone is responsible forsafety.

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 timeand have a stronger voice.

Develop a provincial communications strategy.

We do not always communicate with each other well. There are funders who feel they arecollaborating 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 makinga decision. (Seehttp://kkbiersdorff.wordpress.com/2013/06/18/consultation-and-collaboration-in-change-management/for definitions and a discussion of these terms.) Often what governmentsees as consultation looks to others like communication.

If government committed to collaboration, decisions would not be made before all the issueshave been discussed and before lack of consensus among stakeholders. The evidence thatthere is a lack of true collaboration shows in the inconsistencies from one information session tothe 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 inthe media about people with disabilities as a basic advocacy role. Currently, we aredisconnected 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 themessages. Some agencies don't share a lot with their staff while others do. We need to shareinformation directly. Transparency is needed.

For example, we need to have someone responding to media misrepresentations of ourpopulation. We need to agree in advance on the messages and responses to be able torespond 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 thesame 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 forcommunicators and the media. The group doing the communicating doesn't need to be big orformally represent the majority of people, but must be responsive and consistent with whatothers would say. Start with a base of a few facts and agreed principles.
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Connecting with colleagues across the province is important. Whose message do we want tocommunicate? All stakeholders or just one or two groups? Communication flow betweengovernment and community stakeholders needs to be sorted.

Working together with government on communication would help create transparency andrebuild 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 inthis 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 withdevelopmental disabilities are part of them. The language needs to be accessible and inclusive.We need to think about what the reader needs, not the writers vocabulary or jargon. Do not bedivisive. Stay focused on the common vision. Challenges around politically correct languageneed to be sorted to have clear communication that people understand. We need to takeleadership 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 theissues.

The communication plan should be strategic, consistent, communicate an understanding to allthe 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 (evaluationmethod)

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 hasbeen the timing of communication with respect to consultations and decisions?

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


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Survey from Participants

Following the day, participants were asked for their feedback. Heres what they* said.The best thing about the Envisioning the Future community conversation:

Structure:Small group discussion was great (5 similar comments);Small group breakouts at the end of the day;The last group session working toward a goal. I found it veryproductive;Working through some of the questions that were posed;Visioning exercise.

A Broad Community:Meeting other stakeholders - those who are interested in a brightfuture for persons with disabilities; variety of participants;Hearing the varied perspectives across the spectrum;Seeing the different perspectives that people were approaching theoverall issue;Connecting with people;Being able to hear what others are thinking/experiencing;Having conversations with people from different sectors, with differentroles;I enjoyed hearing the many different views from people of all different sectors of the disabilitycommunity;Networking, and lots of great people sharing great ideas.

PDDs participation:That PDD was in attendance and could hear for themselves what frustration their involvement is

causing. Also, that there were solutions;Apology from PDD for creating the confusion.

What idea that surfaced today would you like to work on in the future?

How to avoid high -jacking the messagefrom those with disabilities andreplacing what they would wish for and substitute what we think works. Howcan ensure our discussions include the perspective of those affected.Helping people achieve authentic inclusio nin the community throughvalued roles, crafting a definition of inclusion.I would be very interested in creating a coalition of providers, advocates, families and guardianscapable of advocating together.

Roles and responsibi l i t ies government, individuals, families, community agenciesService accountabi l i ty(and choice for individuals re: what makes a positive quality of lifepossible and how do we "know" individuals are getting what they need for emotional and basicneeds (and have the opportunity to enjoy life). Criteria for services (e.g. function in daily living).Educationof support workersPlanning for the aging pop ulat ionas it applies to the disability sector. Streamlining access tocare.Emplo yment first. ..This taps into a more holistic, integrated community focus, than just a "pilotproject" or a small single perspective committee could provide.

96% of participants

met someonetheyd nevermet before

My highlight: Watching my adultson participate and hearing theideas that he was bringing forth.The confidence and ability toparticipate in discussion wasfostered in his programs.

The suggestionthat there shouldbe a Minister ofPerson with

Disabilit ies. It's a nobrainer!!!


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How to involve al l the interest gro upsComm unity engagement and consultat ionin regards to embedding services thataccommodate disability in the existing systems rather than creating parrallel, segregatedsystems.Creation of housing optio nsto address various needs of individuals in the community

* 26 participants responded to the survey.

Envisioning Our Future EXECUTIVE SUMMARY and Notes

Documents

Transcript of Envisioning Our Future EXECUTIVE SUMMARY and Notes