Calgary SP Council PDD REVIEW PANEL SUBMISSION

Accessible Housing Society Alberta Council of Disability Services Calgary Alternative Support Services Calgary Community Day Services

Calgary Service Provider Council

Calgary Progressive Lifestyles Foundation Calgary Scope Society Calgary Society of Community Opportunities Calgary Society for Persons with Disabilities

PDD REVIEW PANEL SUBMISSION

CBI Home Health Chrysalis Columbia College Connections Counselling and Consulting Foundation

December 11, 2018

Community Living Alternative Services Developmental Disabilities Resource Centre (DDRC) Excel Society

Calgary Service Provider Council represents 33 agencies who support over 4,000 people to live full lives by providing residential, respite, community access, daily living/ outreach, activity programs including arts and outdoor adventures, employment and parenting supports.

Foothills Advocacy in Motion Society In-Definite Arts Centre Independent Counselling Enterprises Inc. L'Arche Calgary New Age Services Inc. OPTIONS Progressive Alternatives Society of Calgary Prospect Human Services Society Rehoboth Christian Ministries Resicare Society of Calgary Resourceful Futures Residential Support Springboard Centre for Adults with Disabilities Supported Lifestyles Universal Rehabilitation Service Agency Vantage Enterprises Ltd Vecova Ventures Society of Calgary Wheat Country Special Needs Society

CALGARY SERVICE PROVIDER COUNCIL – Submission to the PDD REVIEW PANEL Our community organizations appreciate the Ministry’s commitment to listen to how policy and processes affect individuals and agencies in their day-to-day lives. Thank you.

The open and broad approach to the PDD Review will generate as many opinions as there are individuals involved in the system. As a Council of 33 agencies, we wanted to take our input up to a systems level. Each of our agency members has individual situations and stories that illustrate where the PDD system works well and where they would recommend change.

Collectively, we have a distinct opportunity to provide input on the patterns and process implications that an individual or family might not see. We hope that this input adds a valuable perspective to inform system changes to result in individuals having better lives in the community.

By limiting our input to the system level observations, we are intentionally leaving out much of the supporting evidence that would simply make this report too lengthy. But we urge you to follow-up with our Council, as all of our members are keen to support the work of identifying system refinements and, most especially, the implementation of changes. Being involved early will ensure that we are participating in the change, and not being changed, which will be a more effective change process.

What we believe: Organized by a deep understanding of what matters to people, we believe a network of reliable social services sustained in the community with appropriate funding, shared data, and the flexibility to be responsive to changing needs and innovative to maximize effectiveness, creates a society that lives up to the values represented by the UN Declaration of Rights for Persons with Disabilities.

THREE AREAS OF FOCUS TO REALIZE OUR SHARED VISION Define roles and responsibilities in crucial assessment and in-take process Over time, we’ve moved away from the skill and focus required for the process of assessing needs, identifying opportunities, learning about preferences, and then bringing an individual into services.

When the people involved in that key stage have the skills to ask not only what is needed, but also what is possible, and to hear the individual’s preferences even when those differ from their family’s, services and supports can be implemented with excellent results.

Calgary Region has collected individual stories that illuminate the range of services, support, dedication and expertise that lead to a full life in the community for individuals we serve.

Many agencies have experienced being able to get the best opportunities for an individual put into place, with the support of PDD. But increasingly, the process in inappropriately held exclusively within PDD, dependent on untrained PDD staff who don’t know the individual and then focus on fitting the individual into a box, rather than creatively, co-operatively and openly working to help the individual realize fulfillment.

The response to this isn’t necessarily more training within PDD or more PDD staff. Let’s start by looking at where those skills already exist and build a system that makes sense, and makes use of the expertise in place. Our sector has those skills but they are not being utilized.

In short, today we have a process with the wrong people who are given poor direction.

FIRST STEP: We recommend a task force of representatives from community and Disability Services to re-envision the in-take and assessment processes so that these key decisions are made by qualified people who are also closest to the individual. The new process can still provide the information and oversight needed by government. A fresh look will ensure steps that have crept in, but no longer serve a purpose, are removed.

A robust network of community-based services and supports Each individual, at any point in time, may have devoted family who provide all of their son or daughter’s needs for a full life in the community. In other circumstances, disability sector professionals

Michael Thai’s Miracle Michael Thai was so excited. He stumbled over his words in a hurry to tell his next joke. "Why did the picture go to jail? It got framed," he laughed, revealing a magnetic smile. At 27, Michael was funny and sweet. And he'd been fighting his whole life.

Michael was a healthy four-year-old when doctors discovered a deadly brain tumour in his brain. The tumour provoked a lifetime of health problems: from developmental delay to seizure disorder, partial blindness, and hearing loss. Michael relied on a walker or wheelchair.

Life became unbearable at home.

Michel’s parents took his money to gamble. He wasn't getting the care he needed. He felt ashamed and scared.

One day in his day program, Michael broke down in tears and told staff what was happening at home. With only the clothes on his back, he was welcomed to spend the weekend at CASS employee, Veronica Veloso's home, a decision that transformed their lives.

OPTIONS stepped in to manage the residential services. "The partnership between Michael, the agency, his new supportive roommate and family, and his doctor made all the difference,” explains Elaine Yost of OPTIONS. "When you get a perfect match between the individual and his supportive roommate, you see life explode in a good way. Michael felt loved - part of a family. Wonderful!"

can support the individual to live well and independently in the community. But sometimes it’s a combination of family- and agencyprovided support. At other points in the individual’s or their family’s lives, the needs and circumstances change and the existing supports

Michael had to keep fighting to realize a dream. He needed doctors’ approval to go to Disneyland. The trip was his dream come true, but the best part was being with his new family.

no longer work or could even become a threat to the individual.

The best system will ensure there is an array of choice to support the individual as well as their family members by also ensuring

Calgary Service Provider Council Erin Waite, Chair c/o Connections, erinw@connectionscounselling.ab.ca

Michael had a motto in life: Forget about the past - look for the future. He said, "I hope my story inspires people.

Keep fighting and fighting and fighting. Never give up on miracles."

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community-provided supports and services are available. Checks and balances in place will range from ensuring the individual is involved in the community to requiring standards of care for both family- and agency-hired support, to funding appropriate training, standards and regulations.

Establishing a vision for what a robust network looks like across the province requires agreeing to values and principles, then building from there. Calgary Service Provider Council believes that choice is an important value and that variety in models of service, size and shapes of service providers all contribute to that choice.

Articulating the vision and the underlying values and principles may require a process of dispelling the myths that permeate our sector. For instance agency-provided and family-managed services are often pitted against each other, or positioned as an either/or choice.

Sometimes, the myth that larger agencies are more efficient than smaller agencies or that there is a ‘right’ number of agencies gain traction. Yet, these are arbitrary lines that have no basis in fact and aren’t driven by principles or quality standards.

Another area that absorbs substantial resources is discussing and

Show up and Do your Best Tara is focused on her next goal.

“I want to get a job and learn new skills,” she sounds confident.

When asked what kind of job, she hesitates, “I’d like to be a doorgreeter, but I know there’s a lot of standing,” she says, tapping the brace on her leg.

When she started at Prospect, she lacked self-confidence and had difficulty making eye contact. In those days, if she was struggling, she was too shy to ask for help.

Advocating for herself was identified as a priority for Tara.

Tara was chosen to present to middle-school students about what it means to live with a disability.

Tara was scared at first but they discussed who Tara was and how she wanted to present herself. They practiced so Tara would feel comfortable.

On the day of the presentation, Tara took a deep breath, and was ready.

supporting individuals through transitions. But these extra resources are only needed because of arbitrary interruptions in the system.

Establishing the vision of birth to death supports and services should lead to organizing the system to support that vision, without creating unnecessary barriers for the individual to transition through. Any crevices because of how Ministries or departments are organized should be seamless to anyone accessing the services. The fact that these transitions are now viewed as barriers reflects only on the organization of the system.

Agencies now dedicate significant resources and expertise to anticipating and responding to needs, interacting with family members, navigating various Ministries, all while living within the regulatory environment set by municipal by-law, Alberta Health, Occupational Health and Safety, and a host of other Legislation and accreditation standards.

Calgary Service Provider Council Erin Waite, Chair c/o Connections, erinw@connectionscounselling.ab.ca

“I talked about my disability and what it’s like to be me. I told them I had a car accident when I was one and they asked me how I remember things…”

Tara’s grateful to share with the students, helping them develop empathy for what it’s like to live with disabilities. Tara gave every curious student an honest answer.

“Of course they wanted to see my brace,” she said, so she raised her pant leg to show them. With a huge smile, she exclaimed, “I feel like I’m sparkling inside.”

Tara would be a welcoming presence greeting shoppers. Her sights are set on her goal and she has the confidence to achieve it.

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This is important, valuable expertise that is not reflected anywhere in agency contracts. Rather than calling for new “resource centres,” seamless supports need to be driven by championing every service provider’s capacity to navigate and source solutions that ensure, for the individual and their family, the right services are provided at the right times.

SECOND STEP: We recommend articulating a vision for a sustained, robust network of supports with appropriate funding and shared data created through a formal working relationship between government and community agencies.

We recognize that this is a long-range goal that will require a number of steps, review and refinement, as we build a new working relationship.

By founding this work on shared values and clear vision, the existing myths and misconceptions held among community agencies, by families, and in government can eventually be cleared away and create the space for a working relationship based on trust with everyone working to the same ends.

Getting the balance right: responsiveness and consistency We fully appreciate the challenge of supporting life-long services for people who are complex in situations that are complicated. We know to meet every need and want, PDD services would need a limitless pot of money. We appreciate the reality of limited resources.

Community agencies may challenge policies and decisions, but we will always work with government to help find better ways forward.

Throughout the system, we need better recognition of its inherent tensions: safety vs. rights; responsiveness vs. predictability; flexibility vs. control. The conflict is between the ‘messiness’ that is a human life, and the need for a system that is accountable and manageable. This is not easy to get right.

Community agencies would look to a natural progression after first

Good Momentum!

“What would you do if one of the children got lost?” the interviewer asked. Rodrigo took a deep breath. He wanted to land his dream job as a Junior Program Leader with the U of C Outdoor Centre. He’d dressed well, and practiced for the interview, but hadn’t anticipated this question. He said, “Well, I’d retrace my steps from where we started and follow them back to where I came out…”

It was a good answer, and it speaks to Rodrigo’s ability to take things step by step. Six years ago, he needed assistance with 22/24 areas on the PDD adaptive skill inventory. But he seized every opportunity to learn and grow in his programs.

His willingness to take on new tasks, learn from others, and to learn from his own mistakes, prepared Rodrigo for the day when opportunity knocked.

Rodrigo had the confidence to apply for a job at U of C Outdoor Centre, and skills to do it well.

“And that’s how I got the U of C,” Rodrigo says, smiling, “with the experience I had over the years, I gained enough momentum to get the job.”

Rodrigo is passionate and that translates to good. Rodrigo says the hardest thing has been learning from his mistakes but not overthinking them. So what’s next for Rodrigo, now that he’s landed his dream job? “Well, I’m very happy and love the U of C,” he says, “So they talked to me about instead of being a Junior Leader…they want me to be a Leader.”

articulating vision and values, and then defining roles and responsibilities, to a step of defining a contract for agency services that

Calgary Service Provider Council Erin Waite, Chair c/o Connections, erinw@connectionscounselling.ab.ca

That’s the thing about momentum. It keeps us moving forward.

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gets those balances right. A contract that leads to individuals having more fulfilling lives in the community would do far more than itemize what is allowed. Instead, it would reflect the roles and responsibilities for client-led decision-making, delegate the authority and provide the funding to source, retain and develop the right expertise in the right roles, and reward quality outcomes and innovative approaches while also accounting for dollars and hours.

Most in our community do not feel the contract in place recognizes the roles carried out by agencies, nor compensates appropriately for the expertise, the responsibility and the capacity plus administrative burden.

THIRD STEP: A contract that balances responsiveness to need, protection of rights, with consistency and accountability would naturally follow a process of defining shared vision and values and clarified roles

Choices include being a Parent “Was Child Welfare in the room when your baby was born?” For most people, it’s impossible to imagine having a child taken away, but for parents with a developmental disability, that routinely happens the moment a baby is born. The reason listed: ‘neglect.’

While that trauma is hard to imagine, for the dad posing the question, it went from bad to worse. He was charged with Anger Management issues because of how he responded to having his newborn taken.

and responsibilities.

Despite their work to prove their parenting skills, the decision was never overturned.

Our network of Service Providers in Calgary is proud of the supports we

They continued to improve their skills, capability and establish their stable home.

provide to individuals and of the relationships we have built with PDD and the Ministry, and with the family members who love the individuals we support. Each and every day, front-line professionals provide supports while protecting rights and advocating for individuals to have choice in the community.

We value our partnership with PDD. Alberta has a history, with points high and low for people with disabilities, bringing us to where we are today.

Finally, as a Council and as individual agencies, we’ve all provided the recommendations above many, many times in the various opportunities PDD and the Ministry have provided to us. It is not as important to us that you record our input, but that we work together to implement change.

If this Review leads to a shared process of systems change, then it will truly be a different Review than has ever been conducted before.

The Calgary Region of Service Providers welcome the opportunity to collaborate so that the future we create supports more individuals with disabilities to have fulfilled lives in our communities.

Thank you.

Calgary Service Provider Council Erin Waite, Chair c/o Connections, erinw@connectionscounselling.ab.ca

Years later, with hard work and proving their stability and parenting capacity, they had a daughter who they’ve now cared for with just a bit of parenting support from Connections.

Their daughter had medical issues requiring a feeding tube, and managed that on their own, without problems.

The key for this family is staying connected to supports so they have help when they need to connect to resources or to respond to the next stage in their daughter’s development Now an active toddler, these parents adore their little girl and are living a life as a family.

A bonus? Seeing their success has changed the views of caseworkers at Children’s.

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