This is a presentation we did at TASH 2011 in Atlanta, about how we closed a small centre based day program that we'd accidentally created after almost 25 years of refusing to be centre based! For more information about our work check out www.spectrumsociety.org or www.101friends.ca
8 people from our largest provincial institution , all deemed “incapable of working” – we found or created jobs for most of them within a year. Funders kept trying to give us money to open a centre.
The old continuum of services. This was what the adult service system looked like in Vancouver at the time. People like Ken were in segregated programs run out of warehouses “getting ready” to move up to a sheltered workshop. Lou Brown “pre- means never”
This is how we did things for many years – inspired by Wolfensberger, Lou Brown and others
Faced with a 23% cut to MCFD, it looked like our agency might go under (as many others did). We surveyed each individual and family and asked if they wanted us to consider amalgamating with a bigger agency – the answer was NO! “We’ll go to the wall” to protect Spectrum.
For 15 years we’d resisted opening a centre. Now people were asking for one.
One room in our office – purposely not a big space as we didn’t people to get too comfortable there
It was always someone’s birthday – they’d spend the whole day decorating, buying a cake...
Wolfensberger and Lou Brown replaced by Raffi and the Muppets as sources of inspiration. In 1989, all our staff knew about normalization, social role valorization, Wolfensberger. Now most of them don’t. We were in Syracuse last year, where Wolfensberger was the director of the Training Institute for Human Service Planning at Syracuse University, a world renowned leader in disability research – and when we asked the staff at our workshop how many had heard of Wolfensberger, about one-third of them put up their hands.
Nobody could remember the original rationale.
The new rationale
Example: the group at the Olympic parade – Scott in his wheelchair plugging his ears, Lisa trying to leave, Judy struggling to keep up. Judy often didn’t show up until 10:30, while everyone else arrived between 8:30-9 – they’d wait around for her, Scott would fall asleep, they’d get out for an hour and then back to the centre for lunch. Might go out again after lunch, or might stay back because Adam was having a bad day or they couldn’t agree on an outing or it was raining or...
From “From Institutions to Individuals: On becoming person-centred”
BACI story – fund-raised for a new building, now 100 people come there every day. We thought if anyone could run a good centre-based day program, we could. We were wrong.
Our “accidental day program” was incongruent with our agency’s mandate, and with how we’ve provided services for over 20 years. People didn’t know the history, the real rationaleSo we had to get back to basics, tell them about our history, share the stories. And keep telling them.
We started an in-house press to publish articles and books about community living.
Our first book
The blog and monthly newsletter that followed our first book
So, what to do with our accidental day program?
Leadership is key. We articulated a vision of what we were looking for and recruited for it – a lesson we learned from the business consultant we work with, to hire “A Players.” This way, the job was something to be applied for and aspired to, as opposed to it being perceived as more work for the existing manager (who applied but was not hired for this position).
The face of change – two of our most respected leaders
We didn’t start by announcing that we were closing the day program, which would have invited turmoil. Instead, we invited creativity and collaboration. When the activity space was flooded that winter, the staff decided to set a deadline themselves, and they were out before we expected them to be.
Getting back to basics.Foundational ideas that our staff all knew about 20 years ago were not known by our current staff. Personal support networks – not something we were focused on 20 years ago but it’s become a focus – the shift from an agency-directed to a network-driven approach. Have the right people at the table before you start planning (family, friends, natural supports).
What would an optimal life look like for Velma? She loves libraries, sunglasses, leisurely walks, children. She enjoys a relaxed pace. Velma now lives in a small seaside community with a family and spends her days with one or two other people who like doing the same things she does.
Karen’s new role at the Collingwood Neighbourhood House – started volunteering in the kitchen and was recruited by the coordinator there to work two days a week preparing and serving hot lunches
Raymond used to escape from the day program room at every opportunity and find a desk somewhere in our office to sit at and type. He’s the fastest typist I’ve ever met. He got to and from the day program on the bus independently every day, but was put on a program to track his attendance and “AWOL” episodes. We thought his family wanted him to attend, but when we met with them they asked how much longer would it be before Raymond could get out of our day program and do something productive. Library story.
Barb is a well-known advocate and self advocate. To see her in a group of people with disabilities, she blends in, shuts down, stops talking if she feels people aren’t taking her seriously.
Barb is one of the leaders of the “We Survived Woodlands” coalition
Barb at the legislature meeting with politicians about the Woodlands settlement
Started meeting in the lobby with 5-6 people as a transitional step out of the office. The Director approached Sterling after a few weeks – presumably to ask when we’d be leaving, but in fact to see what he could do for us – did we want a room? Sterling talked to leaders of each department, who were all excited about what we were doing.Receptionists have paper set aside for Clement– and he listens to them more than his staffThings would have turned out differently if we’d started by asking permission to show up. We just showed up, and once they got to know us they wanted to help. Now they miss people when they’re not there.This is happening all over: eg. library downtown, where the librarians all know Raymond, and the Bamboo Cafe or Joe’s Cafe where Stanley can sit and draw, or get them to call Jules for him.In terms of safeguards, think how much more safe people are having all these natural supports – the eyes of the community are on them – if Karen is upset, they’ll step in – they won’t assume that her staff have it under control
When the Collingwood Neighbourhood House is closed, people meet up at the Bamboo Cafe. CNH was closed one day unexpectedly, so the group went here instead – next time CNH was planning to close for a day, they gave us three months’ notice so we could prepare for it.
Our day program transformation exceeded our expectations.
Out Of The Day Program (wi/out personal photos)
Out of the Day Program and Into Community Aaron Johannes and Susan Stanfield Vancouver B.C.
Spectrum Society for Community Living – Vancouver, B.C.• Institutional downsizing projects – 1988-1996• Alternative to traditional services – Residential (40 people) • One 5-bed group home – Community inclusion (80 people) • No centre-based day programs
Competitive employment Supported employment Work crew / enclaves Sheltered workshopPre-vocational / day activity centre
One person at a time• Build on strengths and interests• Normative options – Paid employment – Volunteer work – Recreation – Adult education• Generic resources – Local businesses – Community organizations – Recreation centres – Colleges
2004 Budget Cut• What would you be willing to do differently? – Shared Living – Cluster Housing – Group activities
What to do?“If anyone can run a good centre- based day program, we can...”
The Plan• Drop-in option for people with limited funding• 6-8 participants per day• 50% of time on-site, 50% in community• Each person planning and leading an activity• No new referrals
3 years later• 20 participants – People with 1:1 staff were coming to the program – Whole new team – Majority of time on-site – Calls for a bigger room – Staff were fundraising for a bus – Funders were offering $ for more space – Children’s videos on the donated big screen tv – Friday music group
“Any ‘institution’ (in the sociological sense) that has much momentum but no viable rationale is likely to strive for self-perpetuation on the basis of its previous rationales and practices.” - The Origin and Nature of our Institutional Models (Wolfensberger, 1969)
The rationale• They’re having fun• We’re all friends here• It’s safe• They love doing arts and crafts• We can serve more people this way• Staff can support each other – we’d have no support in the community• It’s more cost-effective• The families like the routine of M-F, 9-3• Some people NEED a centre
The reality• It was boring• They weren’t all friends• Some acted out (which made it unsafe for others)• Only one person loved doing arts and crafts• Staff conflicts were ongoing• Families wanted more flexibility
In a program… In a person-centred service…Decision making is driven by staff and Decision making is driven by the individual andprofessionals his/her support networkPlanning occurs as a singular event, according to Planning is ongoing and individualizeda prescribed formatThe person’s goals are defined within the context The person’s goals are defined within the contextof the program of a holistic planSpecialized supports are the first response to Generic supports are the first responsemeeting individual needsStaff take the place of natural supports Staff augment natural supportsThere is a pre-set schedule of activities that Individuals develop their own personal schedulepeople take part in (or don’t) based on their goalsStaffing is provided at pre-set times according to Staffing is provided flexiblya fixed scheduleFocus on participation Focus on increased independenceFocus on group needs Focus on individual needsStaff skills determine the selection of activities Preferred activities inform the selection of staff with appropriate skillsSupport is tied to the program – the person can’t Services are portable – the person can take theirtake their support with them if they leave the support and change service providers if they soprogram choose
Strategic Plan 2010-2013: “Commitment to Partnership”1. Strengthen the capacity of individuals to develop and tap relationships, networks and community partnerships;2. Shift to a more person-directed approach to service;3. Become recognized as a model of excellence in supporting self governance, locally and beyond;4. Nurture a culture of learning and leadership;5. Develop a self sustaining social enterprise / business arm of Spectrum
Planning• Strategic planning day with leaders – Informed Spectrum’s new strategic plan – “Rallying people to a brighter future”• Met with each family individually – Context of ongoing person-centred planning• Series of meetings with staff team – Training and dialogue – “Changing role of community support workers”
Job Posting: Day Program Transformation ManagerThis exciting leadership opportunity will appeal to someone with a passion for communityinclusion and relationship building. We are seeking a strong leader who can articulate avision of best practice for community living and engage multiple stakeholders to workcollectively toward that vision, consistent with Spectrums strategic plan. Outstandingcommunication and facilitation skills, with an emphasis on working proactively withpersons served, families and staff to build concensus and a shared sense of purpose, willbe critical.The successful candidate will work under the direction of Co-Directors Aaron Johannesand Susan Stanfield to facilitate the transformation of Spectrums day services from aprogram model to an individualized, community-based model of support. This is asingular opportunity for someone to contribute to a process of change within Spectrumslargest (and growing) service area, while developing their own leadership skills. Theposition will involve extensive training, project management, and team-buildingopportunities that will position the Project Leader for future opportunities withinSpectrum or outside the agency. It will involve working closely with representatives fromall levels of the agency, as well as families, funders, community partners and personsserved.
One person at a time• Personal support networks• Build on strengths and interests• Normative options – Paid employment – Volunteer work – Recreation – Adult education• Generic resources – Local businesses – Community organizations – Recreation centres – Colleges
Circles – Person Centred Planning Tool for one person “who do you care about and want in your life?”
Thinking of an individual’s goals and challenges rather than those of a group
Compare program approaches. What’s possible for...One person... A group of people...• Who likes to socialise; this is • Where one person likes to their gift and they enjoy it socialise but... • Another person wants to be alone • Another person is triggered by talking • Someone else wants to go do something else... • Someone isn’t feeling well • Someone...
Today• Everyone is doing things they want to do• Natural supports are everywhere• Behavioural issues have lessened or disappeared• People’s overall health and mobility have improved• No-one wants to go back